The past week has not been easy, I have to say. And I’m just so glad that Christmas is over. I learned a lot about what I can and cannot do, over the past seven days, and I’m now revisiting my lessons to see how I can improve next year.
I have been in a lot of pain, on and off, for the past couple of weeks, and it eventually took a toll on me. I had been actively managing my pain, with pressure points and stretching and Advil (which is the only pill that seems to work for me), but I was just too busy trying to gear up for the holiday season, and I had too much on my plate. Plus, the weather did not help much, and I ended up seriously over-extended.
The net result is that I’ve been withdrawing more and more over the past days, trying to get things straight in my head. I’ve had a lot of trouble thinking clearly, and I’ve had a lot of trouble managing my emotions. I’ve had a lot of trouble, period, and the people around me who could be most impacted by my limits… well, they have been. I’ve experienced some significant set-backs with loved ones, who are now even more afraid of me than before… Part of it is their “stuff” of course, but I haven’t helped matters, by being so erratic and given to outbursts.
It’s depressing, if I think about it on a personal level. So, I don’t. I’m reverse-engineering my issues, in particular the pain pieces.
I picked up a whole lot of papers on the relationship between pain and fear and anxiety, this a.m., and now I need to read through them and give them some thought. The key concepts I’m looking into are:
1. Anxiety can heighten sensitivity and dramatically increase one’s experience of physical pain.
2. Physical pain can bring on feelings of isolation, hurt, rejection, and emotional pain.
3. Fear has a numbing effect — it’s hypoalgesic (decreases one’s sensitivity to painful stimuli).
4. Impaired cognitive processes combined with heightened physical sensations can induce TBI/PTSD survivors to make choices in life that are not only unproductive, but at times downright dangerous. When our executive functions are impaired, we can end up doing and saying things that we don’t really want to — and certainly wouldn’t, if we were in full possession of our faculties.
5. One poor choice after another, combined with unexpected/unanticipated negative consequences, can heighten our anxiety, which feeds into our “pain loop” and can cause us to unconsciously seek out dangerous/risky situations that are fear-inducing and reduce our overall pain experience.
6. But we are not doomed to lives of disaster. Knowing about these risk factors can give us the awareness we need to develop the ability to identify our issues and actively manage our situations, so we pose less of a problem to society, our friends, family, and other loved ones, and can actually built decent lives for ourselves in the process.
With regard to 1, over at About.com, I found this:
Anxiety sensitivity refers to a person’s tendency to fear anxiety-related symptoms (for example, increased heart rate, sweating, muscle tension, headaches) due to the belief that there will be some negative outcome as a result of having those symptoms. For example, a person may fear having an increased heart rate because they believe that it will increase their risk for a heart attack. Another person may fear being anxious because they think that others will view them in a negative light. Finally, someone might fear having the anxiety symptom of having a headache or difficulties concentrating because they think this is a sign that they are “going crazy.”
With regard to 2, in a paper on sensory deprivation and isolation, I found this:
At a symposium held in April 1956 by the Group for the Advancement of Psychiatry, researcher Harold Wolff reported:
We also have reason to believe that the painful experience is one that has a highly symbolic significance and is closely linked with feelings of isolation and rejection, especially when imposed by other human beings under hostile circumstances. (Vernon 1956)
With regard to 3, over at Wikipedia, I found this
Fear induced hypoalgesia
Fear induced hypoalgesia is another example of a mechanism controlled by opioids. It is postulated that fear is a defense mechanism that has evolved over time to provide protection. In the case of hypoalgesia, a decreased response to pain would be very beneficial in a situation where an organism’s life was at stake, since feeling pain would be a hindrance rather than a help. It has been well documented that fear does cause a decrease in pain response[5], however much like the exercise induced hypoalgesia, the exact mechanisms of action are not well understood. Studies have shown that opioids are definitely involved in the process, yet opiates alone do not completely explain the analgesic response[6][7]. What the other mechanisms of action are is still unknown.
I think, when it comes to dealing with TBI and PTSD and pain and anxiety and fear, they are all closely interconnected – and they feed into each other in significant ways.
This is all I have time to post about, right now, as I’ve got errands to run and responsibilities to fulfill. But suffice it to say, I’ll be adding more about this in the future, especially as I read up on more info about pain and anxiety and fear and how they are interconnected.
Broken Brain - Brilliant Mind 
I am thankful that you are putting much info like this out here!!!! I find it very interesting, & as person with TBI & PTSD I can relate to all of this. I have made soooo many bad decisions — that I did not think were bad decisions at the time — but they apparently were & have cost me soooooo very much!!!! Not only emotionally but physically & spiritually!!!!!
I look back on them & see how they have really screwed up my live & made things sooooo very hard for me–& my son!!!! We are in an impossible situation right now, & I think that much of relates to soooo many bad decisions here & there in the past!!!
I am trying to come up with as many constructive ways as I can to get us on a better track!!!! I am taking really deep close looks at all those decisions & trying to learn from them so that I don’t keep having a crappy life because of them! But in the process, I have a hard time, because I feel like such a horrible person & like such a failure!!! I mostly feel that way because of the way that I’ve always been treated in life!!!
All my life people have looked at & treated me like I was weird, crazy, retarded, insane, bad, & have made me out to be a terrible money grubbing, lying, good for nothing piece of crap. All of that combined to make me feel very badly & hurt me soooo tremendously. Then, in the process of trying to prove that I wasn’t a horrible bad person, I have made many bad decisions, in the heat of the moment & have let my passion & my emotions rule my decisions.
Then, that just fed what others already thought about me — that I’m stupid, that I’m a user, that I’m defective, that I’m faulty, that I don’t fit in with society, & so on. I have been talked about, & lied about, & made fun of sooo very viciously. I have been attacked & abused by others sooo many times. And, all of it has hurt me soooo very deeply, thereby, increasing my isolation, my fears, my anger, & many other things!!!!
I lead a life of total isolation with just me, my dogs — which are the bestest, & my son.
And, if others don’t treat me bad enough, my son treats me very badly too. I think that he is resentful of the way I am, the problems I have & how they have effected him! He is very angry & wants me to pay & wants to make me feel the way that he says that I make him feel. He says that I am a horrible mom & a bitch & constantly rubs in my face many things, like: the fact that he is working a public job at the moment & that I do not have one right now.
He treats me like I’m lazy & like I’m somehow exaggerating the effects of the TBI, PCS & PTSD. He doesn’t understand any of it!!!! And, basically tells himself that I could change it all “if I really tried….”
What he doesn’t understand is that I try soooo very hard!!!! I have tried sooooo very hard for sooooo very long; & have had it soooo hard for sooo long all by myself–that I am now soooo very worn out!!!!!!!! I reached a point of feeling like nobody has ever understood or cared & that nobody ever will!!! I feel like giving up often!!! I mean, if things can’t change for the better & I can’t have any decent kind of life, then what is the point??!
But, then, after I go so far down into despair, I look at my beloved dogs & think–who would take care of them the way I do???–who would love them the way I do???–& even though my son hates me & wishes I weren’t in his life; who would watch over him & try to keep him safe & love him the way I do???
But, it hurts me soooooooooo very much that he plays with my emotions, that he insults me, that he makes me out to be such a horrible person & mom — when I’ve spent my whole life protecting him & loving him sooooo very much–& all of the times I’ve hung on & all of the improvements that I’ve made I’ve made for him!!!! He messes with me emotionally & then laughs at me & makes fun & thinks that it is sooooo very funny to him. He constantly does things to get me going, to get me hurt & upset. Then, he either insults me or laughs at me.
He can’t understand any of it — UNTIL HE EXPERIENCES IT, yet as a mother who loves him dearly, I pray every minute of every day that he never had to experience any of it. I don’t want him to suffer any head injuries–or any other kinds of injuries!!! I don’t want him to have multiple injuries!!! I don’t want people to make fun of him, or call him stupid, or treat him stupid, or to socially isolate him — the way that they have done me!!!!!
I want him to have a better life — a fulfilling life!!!!!!!
On top of all of that I have suffered many bad things lately!!!! Loss of some pets, loss of a father, bad news & major surgery following; more bad news with a doc wanting to do surgery on an injured knee & then I go on the 28th of this month to find out for sure if I’m having seizures–which will take away whatever life I have left & permanently isolate me & make me a prisoner of where I live. It will effect all of the things that I love most, & impair me of the only things that give me joy & help me to hang on!!!
This has caused much despair, depression, anger, fear & hopelessness!!!!
But, until the appt. I am doing what I can to live as normally as possible!!!!
The fact that nobody cares or even tries to support me makes it all very hard!!!!! It’s hard to hang on & to deal with things–when you are sooo alone & sooooooo isolated. Yet, being isolated, is soooo much better than being called stupid, being made fun of, being treated like you are a freak of nature or something!!! I will take loneliness any day to all of that abuse & torture!!!!
People have no ideal all the things I deal with & struggle with every day!!! They have no ideal how much pain I live with or deal with & how hard it is to go to sleep, or to get up, or to move, or to accomplish anything decent during the day!!! They just chalk it all up to me being lazy & whining, or lying, or somehow making myself be injured!!! They act like I have asked for the car wrecks, for the falls, etc….
They act like I would intentionally chose the life of great physical pain, torture, loneliness, isolation, poverty, struggle, etc……… Some degree of isolation I have chosen, but I have chosen it because of the way I am treated!!! The hurt that others inflict is just too much to bear!!!!!
Well, I have rambled on too much now!!! I have many chores to get done so I need to get to work.
I just wanted to say that I relate to what you say, & that I am thankful that you are saying it & for this site!!!!!!!!
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Dream Chaser –
Hang in there! Things may look pretty dark right now — they do for me, too, tho’ I’m not living with someone who is as cruel to me as your son seems to be to you — but just hang in there and keep looking for tools to help you.
By all means, check out the Give Back Orlando ebook about Self-Therapy for Head Injury — Teaching Yourself to Prevent Head-Injured Moments, which you can download for free at http://www.givebackorlando.com/hepusef/hepindex.html
I have found it really helpful, in some ways, and you may find it helpful, too.
I hope that both you and your son can find help — and that you can find a good-paying job, as well.
Also, with regard to the possible seizures, please do be careful. Seizures can have many causes, including psychological ones — that doesn’t make them less significant, it just means they need to be treated differently. If you are mis-diagnosed with the wrong kind of seizure and they put you on the wrong kind of meds, that can actually make your episodes worse. So get a second opinion, if at all possible. And touch base with people who specialize in epilepsy, to do a sanity check around this. I’ve had neurologists — and other doctors — tell me all sorts of things about what was “wrong” with me, and I really went on a wild ride for quite some time.
So, don’t take what the doctor says at face value. Get a second opinion.
It also sounds like you could use some local support. Have you contacted your local Brain Injury Association chapter for support groups? Many areas have them, and it sounds like you could use some support — and suggestions for good tools.
So, reach out. To people who understand your situation.
Good luck to you and your son!
BB
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Yes, the 1st Neuro that suggested this, acted more weird & strange than any doctor that I’ve ever been too in my life!!! They didn’t take a history of any kind, have me to fill out a history of any kind; & he didn’t even come in the room & ask me about one or talk to me about why I was there or what problems I was having, or concerns that I was having.
A nurse just did a 15 min short, in office EEG, then the doctor just kept walking in the room saying random shit & then just disappearing!!! This odd appt went on all day, with him handing me seizure medication, having the nurse tell me I couldn’t drive any more & then scheduling an MRI on the other side of the city where I live, & then telling me to just go home take the drugs & they’d see me in 3 months.
I thought that they were completely insane!!!!! I talked to my sleep doctor after that–who works with Neuro’s & told him about that. He thought it was really weird/crazy & acted like he thought that doctor was off his rocker!!!
I told him that I had went home & did my homework, & that according to the homework I have done: If u have ever had a head injury, esp multiple, & if u have anything from that–like PCS, then u can easily have an abnormal EEG with waves that look like seizures!!! Because, when u have BI’s different parts of ur brain r damaged or effected. Ur brain forms new pathways & functions differently in different areas. And, because of this u can easily have EEG waves that look like seizures when in fact they r not. However, the waves in whatever part of the brain can indicate that u have damage in that area.
Anyway, I told him that I had read that many times in my research, & he said that it was ABSOLUTELY TRUE!!!!!! AND, THAT AN ABNORMAL EEG DID NOT MEAN THAT IN FACT THAT U WERE HAVING SEIZURES. HE SAID THAT U HAVE TO DO LONG SPECIAL EEG’S, & THAT U HAVE TO HAVE TEST LIKE MRI’S DONE, & THAT U HAVE TO HAVE MANY OTHER TEST DONE TO LOOK AT “EVERYTHING” & TO FIGURE OUT “EVERYTHING THAT IS GOING ON & WHERE. HE SAID THAT U HAVE TO LOOK AT ALL THE TEST & RULE OUT TONS OF STUFF & RULE IN THINGS AS WELL.
Like, is there any damaged areas that show up on the MRI, where, what does that mean–which problems can come from that. R there other areas damaged??? What r they??? How do they relate, & to what problems. There may b more than one problem area, more than one thing going on. There can b a multitude of diseases, or brain tumors, or scar tissue, etc…
Or the EEG could have just been fallible!!!! He thought that it was insane that he just gave me seizure medication–that can cause a whole host of nightmare problems & side effects, told me not to drive any more, shoved me out the door & sent me on my way– just expected me to run out the door & immediately comply. And, when I didn’t do that they immediately dismissed me. Which was fine–because I had already decided that there was no way in hell I would ever go to that quack again!!!!
My sleep doc says that he has spoken to this other Neuro many times & that he likes him & is so far impressed with him. He says that I’m going to a good one this time, & that I really need to be sure & follow up with this one, & that he will be very through & not jump into that diagnosis quickly. This doctor is much closer & much easier to get to also.
But, I swear to God–I dread having to druge myself to 1 more freaking doctor, & have yet many more test in a sea of past doctors & millions of test already!!! I don’t want to have the MRI because I don’t want to be knocked out, but I can’t do it any other way!!! And, due to the time needed to do it, the fact that I have PTSD & can’t tolerate most tests, esp if they take very long–I just don’t see me being able to do an all day EEG, or a 3 day hospital EEG either. But, I would definitely be willing to try to do a Home Study EEG. It doesn’t give them near as much info. but it can tell them if ur having seizures, & if it’s all u can tolerate then it will sure tell them more than any of them or me would know if I couldn’t do any!!!
I completely had a breakdown after that last Neuro visit!!! Now I think I want to know–but don’t at the same time I really don’t. But, I, honest to God, don’t think that I can handle all the test to find out!!!!! It’s just simply more than I can handle–w/o hitting over-load & shutting down!!!
I’m soooo freaking stressed out–it ain’t even funny. & my neighbor is making it worse by constantly shooting in my back yard, letting his Pit Bulls come on my property constantly, letting them terrorize the neighborhood, trying to attack my son, & now he says that my drain field is on his property & had got the health dept on my butt. I got a guy coming out Tuesday to help me deal with that. This neighbor just goes out of his way to be obnoctious, insulting, disrespectful, & dangerous!!!
I just feel like I’m going to lose it!!! I’m ready to just put my dogs in the back of the van, leave my home & just start driving until I get toward the beach in another state until I find a place I’d like to settle, get myself some property, a camper/trailer or something–while boarding out the dogs & getting a job 1st. I just can’t take living here any more!!! I need some place that is low stress & safe so that I can have a spot that I can let my hair dn & feel safe.
Well, I’m heading to bed now. Got to get ready for another day of dealing with high stress!!!
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If it’s really that bad for you, and you don’t have anything holding you there, it might not be such a bad thing to move on… Sounds like you don’t have a lot of reason to stay put, as it is. If I were you, I’d probably consider packing and going — just make sure not to get into the same sorts of situations all over again. “Geographical cures” can only go so far, if the underlying problems persist. Out of the frying pan, and all that…
Good luck, whatever you decide to do.
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Well, how was your memorial day??? And, by the way, I meant to say that I’m sorry that you are having a rough time right now & going through much yourself!!!
My day was pretty quiet today. I got to sleep a little, though not enough. I got in bed late & I had to take some pain med for my knee.
My son & I actually talked today!!! Somehow we wound up in a conversation about how I feel about what’s coming up, about the seizure possibility. And, I just told him how badly I feel about that — which I had told him before & cried my eyes out, more than once! But, he hadn’t seemed — on the surface to pay attention or really care that much.
He actually acted like he might actually give a crap today. He talked about finding a way & making sure that we somehow find a place where I can still have my dogs but get out & walk with them & about helping me start a training business — he said well, if it happens & you can’t drive then we’ll just have all the clients come to you & bring their dogs to you.
I was shocked & amazed that we were having this conversation!!! I mean he actually acted like he gave a crap & showed REAL SUPPORT!!! He actually threw out ideas as to ways that we could alter things & as to ways that he might help. Actually acted like he wanted to!!! Said there was no way that he would let me quit, or do anything that might hurt me.
I talked quite a bit about how horrible the car wreck was for me & about how horrible & terrifying it was for me gain consciousness to not being able to see, being/feeling paralyzed & having amnesia, etc…. How it felt to suddenly lose everything!!! And, how it felt to b a part of a community, a church, think you have people & friends that care–just to find out the hard way that they don’t!!! It really hurt very badly!!! Haven’t gotten over it totally!
I realize that maybe they felt uncomfortable or were just ignorant, or whatever. But, how do people think that we feel??? How did they think that I felt??? Waking up to all that & feeling the way I did was pretty uncomfortable to me too!!! I had all these injuries & all these problems & I didn’t know what was wrong with me, what was going on, or whether or not if I’d get better or improve any at all. It was pretty uncomfortable on me to have all that happen & then have to go through it alone. My mom tried to help & tried to be there, until I got better & got to where I could get around & go back to work some.
But, my mom really didn’t understand or have a clue, or any knowledge as to what was wrong with me. Therefore no clue as to even how to help or understand or what to do for me.
It’s like when your kid goes off to war & comes back a completely different human being. I quit church & never went back. I mean they all abandoned me & they were all uncomfortable with it all I guess & didn’t want to deal with it anyway. I’ve been alone most my life since–with the exception of a few friends here & there that really understood & that I could talk to about anything. 2 moved away & 1 died.
At any rate me & my son actually had a good deep talk today. I kind of told him a little before we went to bed last night. Because I’ve been going through so much lately & having such a hard time. I told him how he’s acted toward me, how it’s made me feel & how it’s really hurt me too.
As for moving, I’ve wanted to sell for a long time!!! I would really like to be able to have the money off of this place to be able to use to buy another place!!! I hate to have sooo much labor tied up in it & then let somebody else profit from it. I’d like to get this Neuro stuff out of the way & know where I stand with that before I get sold or head out for a major life change. I really hope it’s not the case because I really want to drive out of this place.
This town has been such a bad place for me. Sooooo many bad & horrible things have happened here & I’d really like to have a good fresh start somewhere much closer to the coast. I love it that way!!! My son does too! There’s just something very healing & relaxing about the ocean!!!
In the mean time, I’m taking a serious look at all my head injuries, health issues, how all that effects me & my decisions, who I am now, etc…. & hoping to maybe get some therapy going, like PT, OT, ST, & I just started with a counselor to try to talk through all of this & how it’s all effected me & how I feel about it, etc…. I’ve been doing a lot of reading & a lot of home work & a lot of soul searching.
Hopefully, I’ll somehow come out of all of this way more educated, be able to look things in a different light, & become some new great person in the process–but still love the things I love & still b the core me. I took a spiritual journey several years ago. It was very enlightening!!! I learned how to look at things totally differently & was a very relaxed, very happy person for a long time. Until life happened-bam-bam-bam & wore me down again. But, since I’ve been there I know that it is possible now, so I’m trying to get back there!
But, it’s really hard to do when life is hitting you so very hard!!! I’m trying to hang on/in there while I try to find ways to relax & chill out. I’m trying to gain as much knowledge & put together my own therapy approach!!!
Again, I’m grateful that I’ve found this site, I believe that by reading all the info here & studying & reading that book you speak of–I downloaded it last night–will take me forever to read & work though all of that–but I really want to–that it will really help me to work through all of this & understand everything that is going on with me & how I might be able to help myself & how I might explain to others to help me. Maybe I can get my son to read & study it too???
I think that deep down he’s having a very hard time with it all too. He’s still in teenage mode & he really wants me to be some perfect mom, who can be everything he wants & needs–& yet at the same time he’s trying to be his own man & he’s pushing me away any way he can!!!
But, I don’t know what to say or do with him & I really need him to see that in spite of all his transitions right now that I desperately need him to be here for me & to help me out a lot right now. He’s not even had a chance to be an adult & now he’s having to pay bills around here & having to deal with the fact that he might actually have to take care of me some–for a change. And, he doesn’t want all that, he just wants to get on with his life.
I don’t want it either, but he’s all I got!!! I don’t know anybody else willing or wanting to help or to take all this on???
Sorry about saying sooo much right now! I’m just having a really hard time, haven’t had any support, & I got that appt coming up–where my life may be dramatically changed; & I’m trying to read & process sooo much & look at sooo much & work through it all & do a lot of my own therapy right now.
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Dream Chaser –
First things first – now is not the time to make any radical decisions about your life. Maslow’s hierarchy of needs – food and shelter first. Since you have that where you are until/unless you are assured that you can provide for yourself elsewhere stay put.
Secondly – you seem to have a number of physical needs/physicians. If you have tbi and/or PTSD you need to make sure everyone is on the same page – that they all know what each other are saying and why – test results etc. If you do not feel able to manage these communications yourself call, as BB suggests the BIAA and find out if they can get you an advocate who will help you understand all of your issues and what you need to do to address your health – including meds etc. Most states have some group or organization to work with you initially. At a minimum find out if these physicians have knowledge & training in traumatic brain injury – though that might not mean a lot.
BB is also correct that you need a support group – people who can understand your frustrations but at the same time who will give you directions, strategies, and who will help you get away from the sense of failure/desperation/incapacity. You need a sense of belonging and relationship with the world, starting with the brain injury community is a good place. These are folks who ‘get’ many of the subtle issues. However make sure that this is not just a piss and moan group. You need to connect to individuals who seek self-empowerment and full satisfying lives. Again, contact your BIAA.
While I am not a therapist it sounds deeply as if you need both individual and family counseling in TBI. Since you are dependent on your son for food/shelter you need to have a workable relationship – that doesn’t mean that he will understand you but it does mean that you can stop feeling diminished or worthless because of his perceptions. You need to develop your own understanding of your issues and how to move ahead. TBI affects our self-assessment – without the right support enable you to make better self-judgments you will be setting yourself up for failure. Start now. (it may also be that he is just confused and uncertain and not able to express himself very well either)
You may be in a position to file for disability if you cannot work. Since this is a lengthy process you should begin it soon. Disability is not a terrible thing, and if it helps you then you should use it.
Always carry a notebook with you to doctors visits and write down what they say. If you think of questions you want to ask them write those down for the next visit. Use a simple hardcover composition book – the pages don’t come loose so easy and they are cheap. Date every entry.
Make a list of all the questions and needs you have –
1. Doctor referrals
2. Support Groups
3. Family/individual TBI therapy
4. Disability application information
5. Other supports or programs that might be helpful for you
When you call the BIAA go back to this list and write down everything they said. EVEN IF YOU THINK YOU ARE FULLY CAPABLE ASK IF YOU CAN HAVE SOMEONE COME TO YOUR HOME TO HELP YOU FILL OUT FORMS. You may feel like you are okay, that you can do something like a form – but what happens is your put it off, or forget or don’t understand it or don’t mail it – and you need to get these things going.
BY the way – there are open MRI’s so you don’t have to be ‘drugged’ at all – in fact most dr’s wouldn’t want you to be drugged because that would affect your test results.
You need to think about addressing one thing at a time, make a plan and prioritize according to need – physical needs come first and anything to stabilize your situation. Anxiety and stress are NOT your friends, they will make your cognitive functioning much much worse.
As a final point – not all brain injury shows up on MRI – in fact much does not. I am not sure what will show up regarding seizures. You need to have a neuropsych eval done to establish cognitive range and possible severe deficits. None of these tests are the last word however – though seizures are generally detectable with the EEG. If you are not medicated and may be having seizures you CANNOT drive until that is evaluated. This is not only your life you put at risk but others lives as well.
Take care of yourself, one step at a time and you will get through this. It is possible. I have been in worse.
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Dream Chaser –
Wow, sounds like you have a lot going on in your life… But there are some really good things, too! It already sounds like things are looking up for you.
Congratulations on finding a counselor — do they know about TBI/PCS? If not, you may want to ask them to read up on it, so they don’t end up going down wrong paths with regard to what’s going on with you. My last therapist was a “talk” therapist who knew nothing about TBI and wasn’t inclined to learn all about it – they were on the verge of retiring. My new therapist has a neuropsych background and knows about TBI, and their approach has been very different. In many ways it’s been better, too. Instead of letting me go on and on about my feelings about something I’m just not thinking about properly, they challenge my thinking process and get me to not jump to conclusions that have a lot of emotional ramifications. One of my big issues with TBI, since I was a kid, has been mis-reading clues and cues and not understanding what was going on, then getting really upset and angry about things that weren’t even happening. So, this new therapist is helping me identify what’s really a problem, and what’s just my mis-perception.
As for your home situation, I’d really encourage you to stay put — if you own your home, I wouldn’t go changing anything anytime soon. You need a solid home base. And navigating the sale/purchase of a house after TBI could be a very different story from doing it before. I bought my house a few years before my most recent TBI in 2004, and there is no way I am equipped to go through that rigor all over again. I have a hard enough time figuring out how much equity I have and how much my mortgage payment is, to get into all that paperwork. If you do decide to sell, by all means, don’t do it alone!
That’s good news about your son, too — sounds like he’d finding his feet. The Give Back Orlando site has information for family members at http://www.givebackorlando.com/hepufam/hepindex.html about Helping Your Family Member To Recover From a Head Injury. Maybe he just needs to know what to do. I know that when people come to me in trouble, very emotional and crying their eyes out, I get turned around and confused, and I sometimes get angry. I don’t know what to do for them, and I get upset with myself, and then I sometimes lash out at them, which doesn’t help anyone. But if I know WHAT TO DO about something, then I can take action and I can really be helpful. Maybe your son just needs to figure out what to DO — aside from supporting you emotionally.
That’s a great idea about the dog training — I’m assuming you already know how to train dogs. Having others come to you makes perfect sense. It looks professional, and no one needs to know you’re doing it because you can’t drive. Also, here’s an idea — maybe you could offer to help your neighbor with his pit bulls. I don’t know if they can be trained, or if it’s even safe, but it could be that your neighbor doesn’t know how to control them(?) and could use some help. It might be a good way to connect with them and sort out that situation.
As for your church… it sounds like you still really want that community. I was raised in the church — my parents were both very involved in the evangelical Christian church we attended, so I spent a lot of time in that environment, growing up, and it was an important part of my life. Unfortunately, I sustained a number of MTBI’s when I was in high school, and my behavior became more erratic and unpredictable, and nobody understood what had happened to me and why I was affected the way I was. I had a lot of social issues, so I ended up on the margins and eventually left the church. The parents of some of my friends told their kids not to be around me, which really hurt. But nobody understood why I was the way I was.
In your case, you’re an adult, and you have information about TBI. If you still want to be part of that congregation (and there’s a chance you don’t), you might consider using your experience as an opportunity to witness to others in the congregation. Rather than treating it like a tragedy, use it as a chance to triumph — and testify to the power and presence of God in your life. Truly, coming through that situation is a bit of a miracle, and if you present it that way to others and show how God has made Himself abundantly present in your experience, that might be something that speaks to folks in the congregation. It’s an opportunity to witness, and even if they don’t have TBI, I’m sure there are others in the congregation who could relate to your experiences of hardships — and your faith in the face of it all.
I think the biggest problem for people around us is not knowing what they can do. People — in my experience — genuinely want to be helpful, and want to be able to do something about troubling situations. When we come to them with tales of woe and looking for a shoulder to cry on, we don’t always give them a chance to do something tangible to help. I find it very useful to be aware of my issues and then ask people for specific help in dealing with my problems. And then they feel better. The situation with your son directing his energy into helping you set up your dog training business is a great example. People who feel helpless, when they have something specific to do, can feel empowered.
With people in your church, if you tell them when you need help — like when you’re talking to someone and you need help finding a word or remembering something — and they can help you, that may make a difference in your relationship with them. But there’s only so much you can expect from folks especially with regard to TBI — it scares the living daylights out of a lot of people, because it hits so close to home and it’s so mysterious. But you may be able to reconnect with some folks. Maybe talk to your pastor to get some ideas?
I’m just saying this because it sounds like you really long for that community and miss it. You may be able to go back to it and have it in your life again. Don’t give up… if it means a lot to you. Or maybe you can find another church home.
Anyway, hang in there and best of luck.
It’s good you’re taking steps, and I agree with m — I wouldn’t make any sudden moves or dramatic life changes, if I were you. Especially with regard to your house.
–BB
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WOW!!!! Well, things aren’t necessarily looking up yet; as the guy that had said that he would get the HD off my back & try to help us–not only did not help us, but in fact, when I called to see if he was still going to come out, he got all angry & abusive!!! He demeaned me, went out of his way to Put The Woman In Her Place!!! He was yelling, screaming, demeaning, abusive.
Just totally blew me out of the water. I didn’t really get a chance to say anything because he so determined to stomp on me & put me in my place. So, anyway, he’s not an option!!! So, I called the HD guy & told him that I am working on every possible solution & every angle that I can come at it from. I told him that I have no money & that I am just at the mercy of the system until I can find somebody somewhere with a huge heart that will consider helping us.
U see, NOT ONLY DO I WANT TO BE RID OF THIS HOUSE–BECAUSE IT IS TOO NEEDY & SUCKING ME DRY; ACCORDING TO THE HD GUY IF MY DRAIN FIELD IS NOT DONE ON HIS NEXT INSPECTION–ON THE 11TH, I WILL B TAKEN TO COURT–FOR THE JUDGE TO DECIDE MY FATE–WHICH WILL MOST LIKELY CONSIST OF BEING FINED A TON OF MONEY BY THE STATE, BUT WILL MOST LIKELY BE BARRED FROM “LIVING IN MY HOME” UNTIL THE STUPID DRAIN FIELD IS DONE!!!!!!!!!
SO STAYING HERE, MAY NOT BE AN OPTION!!!! This, combined with my neighbor, combined with the general attitude of folks in this area, combined with terrible government r just some of them many reasons that I want to get the hell out of this place. Really!!!! My son & I worked with a Solution Group before–where we take the problems of the people & go to the politicians & try to point them out & possible solutions, etc……. & work to help the people.
We learned a lot while politicking & doing rallies. I helped lead a public rally & was actually on the news–could have done w/o the news part, but I tried to do it anyway because it might help others. Our state is one of the worse states in the entire nation for: Pollution, Cancer, Disease, Health care, etc…… The state has many horrible things going on here that r killing it’s citizens, making them sick; then they refuse to do anything about all that, & then refuse to give health care to folks once they r sick or diseased. And, that’s just the serfice!!!!!!!!!
We have had a lot of people move here from other places, & from other countries, & most of them say how horrible it is here. From what workers get paid, to how their treated at work, to health care, to people just being dn rt unfriendly/snotty, & redneck prejudiced….. It’s like living in the heart of the KKK around here. U can’t get anywhere for the Politicians, the Rednecks, & all the backwoods prejudice crap!!! A lot of people hate it here & want to move away.
There r parts of the state that r much better than others!!!! & parts u have to fear for ur own life in!!!
My house has more issues than I do!!!!! LOL LOL LOL And, those issues continue to effect a pocket book that I do not have to begin with! On top of that, these issues r getting us in trouble rt now–as with the drain field! And, we may be fined, sued, & kicked out of our home!!! I have a pack of dogs that I LOVE DEARLY–MORE THAN LIFE ITSELF!!! & I MAY LOSE THEM IF WE GET KICKED OUT. I CANNOT BARE THAT!!!!!! THE DEGREE OF STRESS THAT THIS HOUSE IS CAUSING IS A NIGHTMARE!!!
However, I have to stay here every minute that I can rt now, & make as many phone calls as I can, & put out ads, etc….. in hopes of finding somebody to help asap!!!! I touched base with–she’s either a female priest or a NOUN? When my dad was in the hosp some time back–b4 he passed away–she was there, & she helped us & talked to us & paid a electric bill for us. So, I reached out to her yesterday–because she has access to many resources that I don’t–& she said that she is going to do all that she can to help us, but can’t make any promises about just what she can do. She talked like she would at least pay up our taxes, so that we may qualify for some state assistance.
In the mean time, we have pretty much anything of value that we have left, practically sitting on the floor now, to raise money–for the drain field, the taxes, bills, etc…. Also, I have filled out paperwork & sent it all in to apply for gov. assistance with all the house repairs!!! Unfortunately, I may have to stay here–until all the paperwork goes through. If we qualify for the repairs & we can get them done w/o the gov owning our home, that will b great for me all around–because it will make it a lot better to live in, while I’m here; & it will make it much better for selling. Because a fixed up repaired home, with just about everything done will obviously sell for more than a falling apart fixer/upper.
So, rt now, I’m trying to ride out the storm, get all the paperwork done, ask for as much asst as possible, wait on it, hopefully get it done; then put the house on the market–after all that–when the house is actually fixed up & I will get a lot more out of it!!! In the mean time, I am going to see what this neuro has to say, & try to go through the test, as best I can.
& yes I know that their r Open MRI’s–I just had one on my knee!!! While I was there I was intelligent enough & remembered to ask them to put my head & neck in whatever gadgets that I would have to wear, & slide me back in under it–to see if I could handle an open MRI on my head/neck!!!
I cannot!!!!! It may be Open, per-say, but it is still very difficult!!! They have to put coils around ur head & neck, then they have to pack it all tightly with thick pads!!! Then ur face is literally up against that thing! & u have to stay like that for 45 min–per neck, & per head–total of 1 & a half hours!!! I instantly had a panic attack when she locked my head in & slid me under there!!! So, YES, I WILL HAVE TO B DRUGGED!!!
Some people can do it, w/o it bothering them so much, but I can’t!!! Esp. since that horrible wreck, I just can’t tolerate things like that!!! I wish I could!!! Cause I hate being drugged!!!
There is a nurse at 1 hosp that I talked to that works in that dept… She gave me her number & said that if I have it done there, that she will walk me through it, & stay with me the entire time. She was quiet wonderful on the phone!!!
As far as I know the psychologist that I just saw for the 1st time last week, does not specialize in that, & doesn’t know a lot about it. However, she “seems really nice, understanding, & dn to earth.” I am hoping that she will allow me to guide her to places where she can get a lot of info & educate herself–so that she can help me, & maybe others like me. I have an appt with her, rt after my Neuro appt–which is good–as I may b very upset, & need to talk & to get perspective on it. I’m just starting with her, so we will see. If if doesn’t work, I guess I’ll switch or look for someone else.
There’s not many here who deal with that kind of stuff or really understand it. And, most that don’t want to label u with 50 other things because they don’t!!! And, that doesn’t help!!!
As for that church–It hurt me intensely, but I left it long ago, & left it for good reason!!! And, I have a good understanding of the people that go there & how nasty some of them can be. 1 is my dad’s niece, & she went out of her way to make life a living hell for me when I was taking care of dad. He died several months ago. He was 93, & he had had Alzheimer’s for many many yrs… I had to take care of him by myself–when I needed to be taking care of me–it was a real challenge!!! It took a lot out of me.
I have no interest in returning to that church. But, we did like the Church of Science very well.
Here’s the deal–Weather it be church, support group, or therapy, etc…. if I can’t drive–then I couldn’t get there!!! I tried taking some transportation to see what it would b like, & it was a nightmare!!!! They showed up either an hour or so too early, or an hour or so too late. Then, they don’t pick u up when ur stuff is over–u have to set there for 2 hrs waiting on them to come & get u!!!!! In all kinds of weather!!! This one guy in a wheel chair has to wait 2 hrs on them–every single time he goes to his appts………. This guy has no legs, & is missing an arm–if I remember correctly!!! That’s just ridiculous & insane!!!! & they show up on days that u don’t have an appt, & not on days that u do!!! I mean, these people get everything wrong!!!!!
When I tried using them it was a total nightmare!!!! & when they do come, & when they show up way too early, & then come 2 hrs late to get u, ur whole day is shot!!!!!! It really wares u out!!!! & u can’t get anything else done!!!! I have the health dept breathing dn my neck, my neighbor breathing dn my neck, & my son has to get back & forth to work!!! My son could get off his butt & try to practice driving & try to get his license, & he talks about it, but never does it.
If he doesn’t get to work, we will lose everything. And, with him being very inexperienced & starting out he is likely to b in a wreck of his own, which I do not want for him or me. Just quoting statistics here!!!! That’s why insurance is sooooo high on them because they know that too!!!
By no means am I trying to spout doom & gloom here!!! I am just stating the FACTS–as they r, as they exist!!!! I have to get to my Neuro appt tomorrow, & my therapist afterward. I have NO CHOICE, but to drive. I have no one else to take me, & my son does not have his license yet. I have to get there, because I am hoping that he will be a decent doctor & will help me get MORE FACTS, & MORE ANSWERS!!! Until then, I just have to deal with what I have for now.
I’m going to ask him to send me to a place, that I’ve already picked out, for some PT, ST, & OT…. I am hoping that if I can get all 3 of these, & then deal with emotional side of it all with my therapist, that I can help myself much with all this!!! For me–I need to TALK about it–with her. In the mean time, I do much reading & studying, & educating myself!!!! I have learned a ton of stuff on my own!!! & already know a ton more than the professionals that I’ve been to so far–which is very sad!!!!!
But, again, no matter the help I want or need, if that turns out to b true, transportation will still be a HUGE ISSUE!!!
As for my neighbor, He is a backwood redneck–just a fact–even my son says so, who has Pit Bulls & guns so he can b all bad-ass!!! All he wants to do is shot up the joint, let his dogs terrorize the neighborhood while he runs his truck & motor bike, & god knows what else all over the field–stirring up as much dust & making as much noise & raising as much hell as he can!!!!! LIVING HERE HAS BEEN A NIGHTMARE BEYOND BELIEF SINCE THIS BILLY THE KID REDNECK HAS MOVED HERE…. He has made it clear that he wants to add my property to his–I told to just buy it & make us both happy!!!! But, he wants to add it for free!!!!!
So, basically, his plan is to make my life a living hell, & do it long enough that he will break me dn enough that I will just leave!!!!! And, quiet frankly, I’m ready to leave–with all the problems!!! And, if they move us out of here, I most likely will turn the property over to someone who can sell it pay all the bills, damages, whatever, & will just keep on going when I have to load up me, my son & the dogs!!!!!
For most of my life I have wanted to live close to the cost. I have a general area already picked out, & will search that general area when I move, or have to leave. Sometimes u just have to let go of all the crap & move on!!! I & Cody both believe that we would have it much better somewhere else. Maybe so, maybe not, but we won’t know if we never make the move!!!
So, for rt now–my plan is this–since I got my notice on Friday, I’ve been on the phone, on line, whatever trying to get help with the drain field & the financial situation!!! Tomorrow–I will put all that aside, & strictly deal with my Neuro appt., & the aftermath of all that!!! Talk about all that with my therapist! Then, come home, & either allow myself to fall apart–if that’s what I need to do–or just pamper myself–by taking a really long soak in the tub, meditating, yoga, tai-chi, whatever. Whatever I need to do to deal with tomorrow, that’s what I’m going to do. If that includes a long cry then that will b what I will do.
As for disability–I already get that–I have gotten it for yrs… I pay bills, & my son helps… WE BOTH NEED EACH OTHER–& I KEEP TRYING TO GET HIM TO SEE THAT–& TO SEE THAT US WORKING TOGETHER TO HELP EACH OTHER IS IN BOTH OUR BEST INTEREST!!! AND, I ONLY HAVE ONE KID/SON, & HE ONLY HAS 1 PARENT, 1 MOM!!!! I have problems that could cut my life short, I tell him that, & I tell him that I do not want to waste precious very important time argueing & having him be soooo very hurtful to me.
I want him to educate himself a lot on TBI/HI, how to deal with a family member with it, etc…. & go to therapy with me, if necessary & learn how to grow up & how to communicate with me, & understand the difficulties that I have. But, he has got to do the work, & make the effort. So, far, until Monday, he made no effort. I am hopeful that that opened the door to good communication & understanding between us.
I think it is hard on him, as he is having to grow up faster than he wants & help his mom out–at such a young age for him. I’m sorry for that, but I can’t change that rt now.
The Noun/Lady Priest is supposed to get back to me today, hopefully by the end of the day Friday about what help she may be able to provide. She really cares & tries to help people when things r bad, so I’m hoping that she will be able to pull some miracles out of her hat!!!
As for religion, I am not Religious any more. I have left that behind. I have found better than that. I have found Spirituality!!! Spirituality is better, to me, because it is about ur own personal relationship with A higher power. & about ur relationship with the planet, the universe, how were all connected, the importance of being compassionate, taking care of each other, saving the planet, being green, etc….. Spirituality goes way past religion.
Religion tends to control, conform, be cult like, & judge, & condemn. Spirituality is the opposite of all that. It’s about love, peace, non-judgment, non-condemning, etc…… It’s extremely enlightening!!!!!!
As for meds–I don’t take meds–cept for occasional pain meds. I don’t intend to take any–if it be in my power!!! I always look for NATURAL WAYS to do things, heal things, relax, etc……. I embrace things like: yoga, tai-chi, natural diets (the Atkins Modified Seizure Diet if necessary–already started that one). Actually, there r 3 diets so far, & they work better than any seizure drug on the market!!! John’s Hopkins is doing dramitic research on them rt now!!! Most people stop having seizures after 3 days on the diet!!!!!!!!! I always say–why put un-necessary drugs with terrible harmful side effects into ur system/body if u don’t have too!!!
Most things can be controlled, healed, or cured with proper diet, & other techniques like acupuncture, acupressure, message, meditation, Reiki–which I am certified in Reiki 1 & 2, my son also. If we’d just use it on each other now, it might work!!!!! LOL LOL LOL
As for doctors–I don’t have any–except for the one I’m about to see. I do need a good support group, but have yet to find one. I’ve been thinking about trying to find a place that would let folks meet & starting one of my own!!!
As for plans–I have to get up every day & think about all that is at hand & figure out which is most important to tackle that day, that week, that minute. What is second important & so on. I have to do that to make things happen. I’m the 1 that keeps the ball rolling here, as my son does not even have a clue most times, or even want to deal with all the hassels it takes to get help & keep the ball rolling……… I wish that he could see just how much I do plan, & put things into action–which is what really gets us through & helps us to survive here. It’s not all just making a pay check & paying a bill–like he thinks!!!
BB–glad that u have a new counselor that deals with that that really is helping u!!!!!! So very glad to hear that!!!!
As for moving, I’ve moved many times, & it is definitely a HUGE undertaking!!!! But, I have learned a lot from my many moves. I will definitely go about things differently & more organized this time, esp since I would b moving a good 9 hrs from here. Only one chance to get everything & do it rt. Cause once I’m there I ain’t ever coming back!!!! I’m leaving all my woes behind, taking care of me & putting me 1st, & doing whatever I have to take care of me & my dogs.
I don’t have a problem with leaving my home, but I am very terrified for my dogs–if I get locked out of my home!!!! I have put much love, & care into them. They r my heart & my soul–& I simply could not bare to lose them!!! Please say many prayers for this Drain Field situation….. That would send me over the edge!!!!!!
I have been thinking that maybe it would b good for me, & that I might like to educate people in society about TBI/BI, etc….. I think many many people need to see it differently!!!! Need to b more understanding. Not so afraid. Not treat us like we have the plague & their going to catch it or something!!!
Anyway–Look guys, I want u to know how much I appreciate talking with u guys!!! Exchanging facts & ideals can be helpful to all!!!!!!!! I hope things r going well 4 u guys. If u r having a problem in a particular area or areas then please tell me or post, so that I may have an opportunity to offer support to u!!!!!!
Well, I haven’t eaten yet, & my precious little miracle baby keeps looking up at me & prodding me to pet & play with him so I’m going to fix food & enjoy some much needed time with the babies!!!! I have 3 little miracle babies–Britt’s…… There were 10 total & only these 3 little miracles survived–2 boys, 1 girl. One boy–the small one–Dream Catcher Cody considers to be his–but he’s mine to though–he’s the most outgoing of the 3!!!!! He super smart & a real pointer!!!!
The boy who had pneumonia & really really was on deaths door is now the biggest of the 3 & he hangs out with me & after me a lot!!!!! My baby girl sleeps with me–when she’s clean!!!!! He looks like a beautiful painted pony–so I can him Paint Warrior–Warrior cause he’s a real fighter!!!! And, baby girl is named Morning Star… Because she means the stars in the heavens to me. She is just like her mother–same personality, & looks a lot like her mom. Baby boy looks, acts, & has the same retrieving/pointing abilities as his dad!!! Very super intelligent!!!
He will be able to b trained in some service work like his dad. His dad brings me things, picks up things for me, opens the fridge & other doors, recycles, etc…. Working on him helping with the laundry. When my dad was here we had his wheel chair, & hospital bed, & his walker. I used all that to teach all my dogs how to b around all that & how to behave. I would set in the chair & make them lead beside the chair & learn to watch out for it turning & running over their feet, etc…
My daddy Dream Chaser, he is very good when I take him out in public too! Most of them r good out in public, but he leads well & obeys commands better. Mom does too. But, dad will always wait on me & not pull me. But, if I unleash him he kicks into high gear & runs like the wind until he winds down!!!!! Very high strung!!!!!! So is baby body.
I love working with them!!!! I have tons of dogs over the years & many different breeds–but Britt’s r the best!!!! I have mom, dad, adult brother & sister, & then the young 3. I love the fact that their all one family, & that we r all family together. When u have many disabilities or any, dogs/pets really give u a lot & offer u a lot!!!!!!!! Their affection & unconditional love, & non-judgment is really something else!!!! It means the world to me!!!!!
I will do anything I can to keep us together & to take care of us!!!!
Anyway, got to eat & spend quality time with my kids–got a big day tomorrow & won’t get to spend much time with them tomorrow!!! So, I want to enjoy today & relax with my babes!!!!!! My son will b heading to work soon, & it is raining. Don’t like driving in the rain, but he has to get to work.
Take care guys!!!!! Will let u know how tomorrow goes!!!! Probably post that this weekend sometime.
Sending much love, & peace ur way!!!!!!!!!!!!!!!!!! Hugs too!!!!!!!!!!!!!!!!!
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I just wanted to share some good news; which made me excited and angry all at the same time!!!!! I had gone to this new family doc which I had thought would b a good doc office. I had told them about my PCS and talked about my headaches, memory stuff, cognitive stuff etc…
Well, he had acted all concerned and had referred me to a Neuro. I had told them where I wanted to b referred, and the nurse there referred me somewhere else–way out on the other end of town.
Well, I get there, and they don’t even do a history, and didn’t have any history papers for me to fill out when they sent them to me either. This nurse sticks me in this room, they do like a 15 minute EEG, then I have to wait around forever. The doctor appears, disappears, appears, disappears. He comes in, acts funny, does one of those in-office tumor test, goes out, stays out forever, walks back in later, talks about my head injuries and says “Well, it looks like you are having seizures.” I say really!!! He says ya, wants to know if I’m taking any medication for them. I say well, since I didn’t know I was having any–NO.
Then he disappears for a while. Then he comes back in and brings me some medicine packs, tells me that he wants me to start taking seizure medicine. Keppra, once a day, then build up. Then he disappears again. Then this nurse hands me a paper and tells me that I need to quit driving!!!!!!
They wanted me to go home start seizure meds and quit driving, and see them 3 months later. I went sit there and cried like a baby!!!!! Then, went to my van and sit there and cried like a baby. I went home all upset, went into a very deep depression thinking about that. That news was soooo devastating to me and my living situation that I considered that if it was true that I couldn’t live with it.
But, amidst all the grief I kept thinking that things just didn’t feel right with that doctor visit. and I had no signs of any kind that I was any kinds of seizures!!! I just believe that there was any truth in that!!! I felt like I’d just seen the biggest quack on the planet. I DID NOT GO HOME and TAKE THAT MEDICINE EITHER!!!!
So I tell the new family doc office that I want a second opinion, and that I want another referral!! So then that same nurse calls me back and tells me; “So, let me get this straight, you don’t like the Neuro that we referred you to, and want a second opinion and YOU want US to refer you to another one??? I say, “ya, I do; because I don’t agree with that and the office was just something out of the Twilight Zone. So, she says, “Well, we don’t do that.” Gets all smart-ass with me and acts like a total B!!! Then she calls me back and tells me that the office manager has decided that they are going to cut me from the practice.
So I say, “Well, that’s fine with me!!!” Then I told her that if they didn’t want me to have a second opinion on something that important, then I needed to b away from that office anyway. Then, I told her about all the 6 times that I had had to request OT, PT, and ST. And, about the time that the stupid NP had seen me for Bronchitis–told me I didn’t have Bronchitis, then turns around and tells me I got GOUT–when I had no signs of Gout, then tells me I need to take Alpurinol from now on. Tells me I didn’t have bronchitis–which I did–even had to go somewhere else and they said I did and gave me antibiotics!!! I told her then I didn’t have any Gout, and that I did have bronchitis; and I haven’t taken that darned medicine either!!! STILL DON’T HAVE GOUT EITHER!!! And, my uric levels were just fine on blood work at the ER when I had to go for 1 of my bad headaches!!!
I told her that them and that damned Neuro that I had saw were all quacks and that I was going to get my 2nd opinion w/o them!!!
So, anyway, on to my good news!!!! I did get me another Neuro appt…… Just saw him today!!! This visit went like a real doctor visit. He came in talked to me for a while, did some in office test. Told me that he wanted to do some blood work, that he thought that maybe I could have a B12 deficiency…. and that given my history that he would send me for an MRI, of my Head/brain, and neck/spine.
I asked him, “Okay, what about the seizure thing, do you think I’m having seizures or not, cause Dr. Kabbani says I am. So, he says “O, so you’ve already seen him have you???” So, I say ya, and told him what happened there. So, he says to me, “You’re not having seizures!!! I say, “Really, you think so/not, cause that other doctor said that I was.” He said, well, we get whatever he’s got and see what the hell he’s basing that on, because I’m here to tell you that you’re not having seizures!!! He said, we’ll schedule EEG here, and look at it, but I’m telling you I will b absolutely shocked if you are having any!!!
Then, he told me that he and his associates had had some discussions about that doctor, because they had had many patients come there that had seen that same doctor, and had had been told also that they were having seizures, and that none of them that had come from there were having any seizures!!!! He said that they had had to re-test many of them to set their mind at ease, and that he would do one for me to set my mind at ease, but he did not expect any seizures to show up.!!!!!!
He also said that he did not expect my MRI to show anything either, but given my history and all my HI’s , and the symptoms I’m having that he would have it done just to b sure. He listened. He talked to me. He reassured me. He acted like a good doctor that gave a crap!!! Oh ya, he’s sending me for my PT, OT, and ST, like I asked for–thought it would b a good ideal.
So, I was right on when I demanded and wanted my 2nd opinion!!! and once again, MY INSTINCTS WERE RIGHT ON TOO!!! I even had a person that I had been talking to to tell me that, ” Well, I shouldn’t went to that doctor and wasted mine and his time if I wasn’t going to do what he said; and that I just needed to cancel my other appt…. and just not waste my time going to it!!!!!!! She said that I just needed to not go to any of them and just do whatever I was going to do!!!! I said, Excuse me!!!!
So, I had left her to, because NOBODY HAS A RIGHT TO TELL YOU THAT YOU ARE WRONG TO GET A 2ND OPINION, OR TO LISTEN TO WHAT YOUR INSTINCTS ARE SCREAMING AT YOU!!!! NOBODY!!!!! And, then for people like that to treat you like you’re crazy in the head, or an ass, or like you are just being a difficult patient, etc….. is just downright ridiculous!!!!!
The therapist I have now don’t treat me that way!!!! She listens, instead of doing all the talking. And she acts NORMAL!!! And, she hasn’t told me how to feel or what to do–esp when it comes to my health and getting 2nd opinions!!! However, she did agree that she thought that it was a good ideal and that I should go. We’ll see how things continue to go with her!!!
So, anyway, Me and this new Neuro thinks this other guys a quack!!!! And, he agrees with me that he doesn’t believe I’m having any either!!!! And, he’s going to do these test and then talk to me again!!!!
But, I got to tell you, it makes me darned angry that a doctor like that is telling all these people that they are having seizures, and putting them on seizure meds, and telling them not to drive, etc… He is turning peoples lives upside dn, upsetting them, causing them to suffer horrible side effects from those kinds of meds, and all for his own pocket book and benefit!!!!!!!!
He should not b allowed to practice!!!! And, that family doc that is telling people crap and putting them on meds for crap they don’t have and not putting them on meds for crap they do have should b put out of business!!!!! And, their referring people to this other quack too!!! And, I don’t think any better of that stupid counselor either!!!!
I tell you — YOU HAVE GOT TO LISTEN TO YOUR INSTINCTS, and GET LOTS OF 2ND OPINIONS!!!!!!!!! GO WITH YOUR GUT!!! LISTEN TO YOUR GUT! DON’T LET ANYBODY TREAT YOU LIKE YOU’RE CRAZY and GET AWAY WITH IT.
ANYWAY–I’M VERY HAPPY, HAPPY, HAPPY TONIGHT!!!! and ECSTATIC THAT THIS DOCTOR DOES NOT BELIEVE AT ALL THAT i AM HAVING SEIZURES!!!!!!!!!!!! HOORAY FOR ME FOR LISTENING TO MY INSTINCTS and NOT TAKING MEDS THAT I DON’T NEED, and FOR GETTING 2ND OPINIONS–THAT I DO NEED!!!!!! PROOF YET AGAIN, THAT I KNOW WHAT I’M DOING and THAT I STILL HAVE SOME INTELLIGENCE!!!! “
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Holy smokes – what a great story… not great because you had to go through it, but great because it’s really valuable information for people to have. A lot of folks with head injury have been through bad experiences with neuros and other doctors, and we have lots of horror stories to tell.
In your shoes, I would probably tell someone in charge about this doctor. If he’s doing this to other patients, turning their lives upside-down for no good reason, then perhaps he should be reported to some regulatory agency. I’ve been encouraged to do that with lousy doctors I’ve seen, by friends who were in medicine (they got out, because the medical field is so screwed up) but I didn’t do it. I almost wish I had. In my case, I was just one person whose life was being messed with — and the docs didn’t actually wreck my life, because I didn’t do everything they told me to, or they erred on the side of caution and under-estimated the impact of my issues.
But if this doctor is “on the loose” misdiagnosing a lot of people and telling them they cannot drive when the economy is so bad and people are already having a hard time getting by, and he’s done it to more than one person AND he has a history of this kind of dangerous behavior, perhaps he should be reported. I’m not talking about a malpractice suit – just reporting the doc to a regulatory board. I wouldn’t tell my friendly doc that I did, however, as it might taint your relationship with them. They may see you as a threat, if you divulge that information.
The other thing is, the nurse is not the one who should be making decisions about referring you, and if you specifically request a referral to a specific doctor AND if the doctor is in the network that’s covered by your insurance, but they refuse to honor that request, SOMETHING IS WRONG. There is a dangerous level of power-mongering going on there, and the nurse is no position to be wielding that power. I have dealt with some really idiotic receptionists and nurses (as opposed to the really good receptionists and nurses who are at my current PCP’s office — they rock!), and I’ve had to really wrangle with the bad seeds. I’ve had to go ballistic on some of them and “get out my gorilla suit”, which I hate to have to do. But it was the only way they would pay any attention to me or give me the information I wanted. I tried being nice. I wanted so much to be nice. I go out of my way to be nice, because I can so quickly switch into “Evil TBI Mode” and tear people a new a-hole at the drop of a hat. But they treated me like crap, dismissed me, and they were standing between me and adequate health care. I refused to stand for that, so I had to get heavy with them.
It wasn’t pleasant, but it did the trick.
And I switched doctors. Because if the receptionists and nurses are actually standing between me and good health, something is terribly, desperately wrong. I wish I had reported them all to the hospital administration. But I would rather just let that go, than get into it with everyone all over again.
Bottom line is, don’t take no for an answer, and always trust your gut. Keep moving, till you get adequate help, and don’t settle. You did the right thing by keeping at it. And it’s great that you found someone who can actually help you. Woo hoo!
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I absolutely LOVE UR RESPONSE!!!!!!!!!!!! U REALLY MADE ME LAUGH WITH THE RIP THEM A NEW ASSHOLE THING!!! THAT WAS GREAT!!!!! I’VE DONE THAT TOO!!! And, I tell u rt now, I’m fixing to rip that damned family doc & esp that Neuro a new one for putting me through all that stress, endless crying, & worry. And, that darned therapist is on my hit-list today too. I can’t wait to tell her how horrible she behaved, & how horrible it is for her to be putting people dn for standing up for themselves & for advocating for themselves.
I mean the audacity of her to treat me like I was some ass or nut, or most importantly like–who the heck did I think I was to question professionals or authority???!!! I TELL U WHO I AM–I’M THE PERSON WHO WOULD HAVE BEEN DEAD A 100 TIMES OVER IF I HADN’T!!! I’M THE PERSON WHO WOULD HAVE HAD A DEAD SON SEVERAL TIMES OVER IF I HADN’T!!!!
MY SON OR I WOULD NOT BE HERE TODAY–MANY TIMES OVER IF I HAD NOT STOOD UP TO THEM, ARGUED WITH THEM, REFUSED MUCH OF THEIR CRAP, & GOT OTHER OPINIONS!!!!!! MY PERSISTING; MY FIGHTING FOR MYSELF & MY SON; MY SAYING OH HELL NO; MY ADVOCATING FOR SELF & SON IS WHY WE R HERE TODAY!!!!!!!
I used to let all of them treat me terrible & push me around something awful!!! But, my health suffered dearly for it, & then when my son came along the doctors did him the same way!!!! I said OH HELL NO, I ONLY GOT ONE KID & AIN’T NOBODY CEPT GOD HIMSELF TAKING HIM AWAY FROM ME–ESP THROUGH MEDICAL NEGLIGENCE!!!! THAT’S WHEN I REALLY STARTED STANDING UP & GETTING MORE COURAGE!!!
And, what really gets under my skin is when u stand up to them they just treat u like ur some nut case!!!! Boy, that really pisses me off!!!! Act like they don’t even know what ur talking about, like ur just full of it, & just whining & complaining for no good reason. I’ve been deemed a nut at more than one office & talked about like a dog behind my back–& have witnessed them talking about me & giving me these LOOKS!!!!
I’m telling u rt now, this family practice & that Neuro–& probably some others, r in cahoots together!!!! They all have this drug ring, this kick-back ring going to make all this extra money for themselves!!!!!!! And, at the risk of all the patients!!!!!! AT THE RISK OF OUR HEALTH & OUR SANITY!!!!
I TELL U, I’M JUST BOILING MAD AT THEM TODAY!!!!!! I’M HAPPY AS HELL THAT SEIZURES R MOST LIKELY NOT THE CASE FOR ME, & THAT I MAY GET SOME MUCH NEEDED THERAPY & TEST. BUT, I’M MAD AS HELL AT THOSE OTHERS!!!!!! AND, I’M GOING TO REPORT THEM!!!!! TO THE MEDICAL ASSOC., TO THE TBI IF NECESSARY; TO THE GOV, ETC… & ANYONE WHO WILL LISTEN!!!!
I AIN’T TAKING THIS CRAP LYING DOWN!!!! & THEIR ALL GOING TO GET A HUGE PIECE OF MY MIND!!!!!!!!!
I’M LIKE U, WHEN SOMEBODY BEHAVES THAT HORRIBLY & GETS ON MY BAD SIDE–I GOT NO PROBLEM RIPING THEM A NEW ONE!!!!!! I always take the nice, sweet approach 1st!!!!! I prefer to b nice, by nature!!!! I always say, why be mean & nasty if u don’t have to & it ain’t called for!!!! In fact, I always hate it when people act that way for stupid stuff, or for no good reason.
BUT WHEN IT IS CALLED FOR I AIN’T GOT ONE SINGLE PROBLEM BEING AN ASS–WHEN IT COMES TO STICKING IT TO HORRIBLE PEOPLE LIKE THEM THAT R JUST TURNING PEOPLES LIVES UPSIDE DN AT THE DROP OF A HAT, & DOING IT FOR PROFIT!!!!!!! PEOPLE DIE FROM STUFF LIKE THIS!!!! FAMILIES R TORN APART FROM STUFF LIKE THIS!!!!! PEOPLE LOSE THEIR CARS, HOUSES, & WAY OF LIFE FROM CRAP LIKE THIS–& THAT JUST MAKES ME MAD AS HELL!!
Like u said, TIMES R HARD, & like others I need to find work ASAP!!! & this put a huge hold on that–because if I couldn’t drive, I couldn’t get back & forth to work–& I would have to dramatically limit my job choices–for safety reasons!!!! I got bills to pay & people breathing dn my neck!!! & I ain’t got time to waste on being stressed out & worried & put through hell all for nothing!!!
I mean, I’ve got no other way to get around, & a dangerous neighbor from hell, that’s fixing to get me in court & possibly kicked out of my home till all this is resolved, so I already had enough going on & was stressed out enough. That worry really sent me over the edge. I just couldn’t imagine going on if I had to b stuck here, & had to deal with all that–in the face of having to grieve loss & deal with a dangerous neighbor, being out of my home etc…. How horrible of those doctors to treat me that way & add all of that to the pot!!!
We have been done sooooo dirty, by sooo many doctors & therapists!!!!!! It just makes me sick to my stomach when I see how many of them they r out there!!!!!! It’s just not right!!!!!!
People like U & ME & THOUSANDS OF OTHERS r out there with serious issues & desperately needing help. Their health is falling apart, or coming unglued, health problems that will kill them if they r not found or get the rt treatment!!!! Then, there’s people like us that may not b dying from our injuries at present–but we have much difficulty in our lives because they don’t listen–because they blow us off–because they just treat us like we r crazy–because they won’t give us help that WE SO VERY RICHLY DESERVE.
WE & ALL PEOPLE DESERVE THE BEST TREATMENT THAT THE PROFESSIONAL SOCIETY HAS TO OFFER!!!!!! AND, I MAY JUST MAKE IT MY NEW CAREER TO EDUCATE FOLKS & TO ENCOURAGE THEM TO FIGHT FOR THEMSELVES & TO ADVOCATE FOR THEMSELVES!!!!!! THEIR HEALTH DEPENDS ON IT!!!! People need to know!!!! They need to know that they r not crazy!!!!! They need to know to have faith in & trust their gut, trust their instincts!!!!!!!
As far as I’m concerned, when they do stuff like that to u, they might as well commit murder, or commit a serious crime.
PEOPLE LIKE US R GOING TO HAVE TO BAN TOGETHER & FORCE THE PROFESSIONAL COMMUNITY TO HEAR US, LISTEN TO US, & CHANGE HOW THEY OPERATE!!! THEY NEED TO BE HELD ACCOUNTABLE FOR THEIR ACTIONS!!!!
OH YA–I KNOW EXACTLY WHAT U MEAN BY EVIL-TBI MODE!!!!!! I THINK WE ALL HAVE THAT MODE & U DON’T WANT TO GET ANY OF US IN THAT MODE!!!
U R JUST TOO FUNNY!!!!!!! THANK YOU SOOOO MUCH FOR UR INPUT ON THIS ONE–I LOVED THE WHOLE THING THAT U SAID THIS TIME!!!! LOVED IT
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Thanks Dream Chaser –
I’m glad you enjoyed my response 🙂
I can totally hear where you are coming from… A LOT of us have been there, for sure! It’s infuriating. And scary. And upsetting. And confusing. And crazy-making. And total BS. And until we manage to communicate with the rest of the world what we need and educate them about TBI survivors being human beings who may need help, but are still human beings, we have a long way to go. We have to keep steady, tho’, and keep to the higher road… We’re in charge of our own destinies, I do believe, and our future is in our hands. So, it’s best to keep a steady hand.
Yes, blow off steam. Absolutely. Let it all hang out! But don’t let it get the best of you. With TBI, that can happen very quickly – out of nowhere – and then we have to clean up the mess — even though it’s obviously not ONLY our fault!
Now, take a deep breath … it helps to activate the parasympathetic nervous system — the part of our central nervous system that helps us recover from the physical biochemical overload of high stress and helps us function effectively in a challenging world. Take a step back and think things through before you go “gunnin’ for bear” 😉 Maybe listen to some music. Or go for a walk or get some exercise. Work out that energy in a positive way. I’ve started cleaning out my study — my therapist recommends cleaning, which I hate to do, but they’re right — it does help.
I totally hear where you’re coming from with the docs and all the people around you in your life. Just keep in mind that TBI messes with our ability to judge situations, so at times — and this has often been true with me — our brains can get us turned around and not thinking clearly AND we can get really revved and worked up over things that — yes, are very distressing — but are multiplied about a thousand times in our minds, so we have a hard time knowing how best to respond.
The thing I have to constantly watch out for is my tendency to blow up with righteous anger — and take everybody around me out in the process. Even my friends, who get in the path of my outrage and have to talk me down. I am often totally justified in my concerns, and I have good reason to be upset. But my reactions can totally blow others out of the water — sometimes the wrong people, too 😉 AND they make it hard for me to think.
Emotions can seriously mess with our ability to reason and be logical about how best to handle situations. And when we’re angry AND sad AND afraid AND upset AND outraged AND indignant AND convinced we have every right to all of the above, even though we may be right, we may not make positive choices about how to handle the situations — and we can be our own worst enemies. Even if we’re right and are entitled to be outraged, we can end up alienating people who can help us, by flying off the handle.
I think — for me — the trick is to remember that the times when I am feeling most vulnerable and afraid, is when I’m actually the most powerful — I’m in a position to make choices that can put me down a good road or a rough road. And I’ve got so much energy, I can make some really powerful choices and take powerful actions at that moment. If I get caught up in the “down” side of that energy — the fear, the anxiety, the agitation — then my results are often not very helpful to myself and others. If I think I’m a victim, when I’m feeling a lot of energy, then that part of me gets “fed”. And I can make myself into even more of a victim than I was at the start. But if I concentrate on using that energy for something positive and good, well, then, I can start to get things going in a good way. And I can change my situation for the better.
So, as you’re feeling what you’re feeling, don’t let it get the best of you. There is a lot of life out there to be lived, and you don’t want to get derailed by a tidal wave of emotions that have come up from feeling like everyone has it out for you. That may be true, in some ways, but you don’t have to be a victim — you have the power to make different choices in your life and to choose how you feel and act in any given situation. Don’t let anyone tell you different. It’s important to recognize your feelings, yes — but you should rule and control and manage them, not the other way around.
I like your drive to educate others. It’s so important. We TBI survivors are too often just NOT on people’s radar… even when we are close to them. What we have been through is often much too scary for others to think about. It gets them “where they live” if you know what I mean. We are the true warriors, though – dealing with what terrifies others. And our example of staying calm in our own storms can be so helpful for others. When I was a kid, my parents used to tell me that I needed to be a good example for my younger siblings, and I really took it to heart and tried like crazy to do it. I had a lot of difficulties doing it, but at least I had the intention. And it stuck with me.
I think of people like you and I as being in that same kind of role — we TBI survivors are out on the forefront of human experience. We’re like the “older sisters and brothers” of the world. We are going where others are afraid to go — especially when we face up to our issues and learn to deal with them in positive and productive ways. People don’t have to have gotten hit on the head to have neurological issues. There can be viruses, genetic conditions, other sorts of accidents, strokes, trauma/PTSD, etc. The brain is the final frontier, and here we are, finding out what it’s like to deal with some serious disabilities — and come out on top. We are finding out first-hand how to live with challenges “above our shoulders” and we’re learning our lessons the hard way — in ways that stick with us over the long-term.
So, it’s up to us to teach others — who else can do it better? We can tell people from personal experience (not in a textbook or a classroom — this is classroom life!) what it’s like to overcome this kind of thing, what we need to do it, what we don’t need, what is helpful, what is harmful, and how to just be decent human beings. I think a lot of people genuinely want do do that — they just don’t know how. Or they don’t think it can be done. Others are just so screwed up and damaged, it’s best to give them a WIIIIIIIIIIDE berth. It’s not even worth it to “go there” with them — it’s a seriously lost cause. When we show decent human beings (with our example) that recovery from head injury CAN be done — and how — we do others (and ourselves and others like us) a great service.
Now, about medical folks… I’ve been really puzzling over how it is that doctors turn out the way they do — why some turn out better, why others are so clueless, and why some are just plain bad news. I think that it has a lot to do with the “business” they’re in — they spend their careers (and start out in their education) dealing with death and disease and disability 24 hours a day, and the way the medical system is set up, they just don’t get the opportunity (or the support/encouragement) to take care of themselves. I think that trauma has a lot to do with it — being under constant stress changes the brain in important ways, and when you don’t take time to recuperate and take care of yourself (and lots of young doctors don’t), well, then your whole system gets fried… and the brain gets changed in ways that make it harder and harder to judge what the heck is going on. So, in a way, a lot of doctors are head-injured, too — but in a different way.
I think it’s important to have compassion for people at the start – give them the benefit of the doubt. But if they prove to be just plain evil, well, then sometimes it’s best to just walk away. Getting evil in return tends to work against me.
I think the bottom line in all this is to take the high road, when possible. Yes, we go through so much awful stuff, and we do suffer a great deal. But we can handle it. We can take it. And we can learn from it and turn it into something positive. I do believe that much suffering and pain can be redeemed and used for the good. So, don’t let life get the best of you. There is so much joy, so much delight, so much good and love and triumph to be had. We can’t let the quacks of the world, who are blinded by one thing or another, get the best of us and wreck our entire lives.
In the end, we are behind the wheel in our own lives — certainly, we are affected by the actions of others, but we don’t have to be thrown under the wheels by them.
So, keep fighting! Keep going! Keep on keeping on, by all means. But remember to keep centered in the midst of the storms. You’re not helping anyone – especially yourself and your son – if you get swept away in the tidal waves that come up.
Best of luck to you!
BB
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Hey Gal: Don’t worry, I didn’t kill anybody!!!!! LOL I didn’t cuss them out either!!! But, I did have my say!!! I let that other Neuro know what I found out, what I was told, & that I had gotten my 2nd opinion because things did not feel rt when I came there. I told them that I had not only found that out about myself, but that I had found out that they were doing that to other folks as well–plus if somebody’s doing it to u, their usually doing it to others as well. If acts like a duck, & walks like a duck then it must be a real QUACK!!!
I told them they knew full well how badly that that had upset me–because I had broken dn in their office & cried like a baby!!!!! They knew that I could not handle that!!! They knew full well, 1st hand the effect that that would have on my life–& that I could not live with that. I mean, I just fell apart rt there in their office!!!! The bastards saw the effect, 1s hand of what they were doing to me & telling me!!!!! And, they said nothing, did nothing to correct that!!!!! I have no compassion for somebody that is that CRUEL & UNDERHANDED!!!!! NONE!!!! THERE IS NO EXCUSE FOR ANY DOCTOR/OFFICE DOING THAT TO PEOPLE OR PUTTING THEM THROUGH ALL OF THAT!!!!!!!!!!! ABSOLUTELY NONE!!!!!! & I FOR 1 WON’T TOLERATE IT!!!
IF U DON’T COMPLAIN ABOUT IT, DON’T MAKE A FORMAL COMPLAINT; IF U DON’T CONFRONT THEM ABOUT THEIR ACTIONS THEN THEY WILL CONTINUE TO GO ON & ON DOING THAT THAT TO 100’S OF INNOCENT PEOPLE!!!! AND, IT’S NOT JUST ME THAT DESERVES JUSTICE & GOOD TREATMENT–IT’S ALL THE OTHERS THAT HE HAS DESTROYED & TURNED UPSIDE DOWN & ENDANGERED WITH HIS ACTIONS!!!!! THEY DESERVE SOMEBODY STANDING UP FOR THEM–IF THEY WEREN’T ABLE TO DO IT FOR THEMSELVES!!!!!
PEOPLE LIKE US CANNOT SET SILENT & LET DH’S LIKE HIM GET AWAY WITH BEING A HORRIBLE DOCTOR LIKE THAT!!!!!! AND, THE BAD ONES LIKE HIM MAKE IT HARD ON THE GOOD ONES!!!!! I HAVE NO PATIENCE, OR COMPASSION FOR PEOPLE LIKE THAT!!!!! NONE!!!!! Don’t get me wrong, if he stopped practicing medicine on his on & copped to his actions, & paid the price & then asked each of us for forgiveness–& he really meant it–I would forgive him!!!!!!!
IF SOMEONE DOES ME WRONG & THEY R TRULY SORRY–I WILL ALWAYS DO MY BEST TO FIND A WAY FOR ME TO FORGIVE THEM!!!!! IF SOMEBODY IS TRULY SORRY THEN WE SHOULD FORGIVE THEM!!!!! AS WE OURSELVES WISH TO B FORGIVEN!
I absolutely told them what I now knew, how it had made me feel, & how they had treated me, & how that should not happen to me or any other human being!!!!!! & I told them that I absolutely will be making a formal complaint to the Medical Board/Assoc…… I am going to do the same with that family doc office!!!!! I’m going to tell them in person what I found out; about me, & about that QUACK that they sent me to!!!!!! And, I’m going to inform them that I will be filing a formal complaint on them!!!!!!
Martin Luther King was a wonderful man who spoke out against injustice, etc…… & what a wonderful speaker he was!!!! And, we would all do well to follow in his footsteps!!!! Injustice & crime & bad treatment goes on & on unless people r willing to speak out against it!!!!
And, I called that darned therapist & called her on her actions!!! I let her also know what I had found out from this new Neuro–about me, & about this other QUACK, & that NOBODY IN HER POSITION SHOULD EVER DISCOURAGE SOMEBODY FROM DISTRUSTING THEIR INSTINCTS, OR THEIR GUT FEELING!!! NOBODY!!!! I TOLD HER THAT INSTEAD, SHE SHOULD BE ENCOURAGING ME–& OTHERS LIKE ME–TO STAND UP FOR THEMSELVES, TO ADVOCATE FOR THEMSELVES (& SHOULD BE HELPING THEM TO DO THAT), TO GET 2ND OPINIONS (& A 3RD IF NECESSARY)!!!
And, she should!!!! Nobody should set in a therapy position & attack their patient for trusting their gut, for trusting their instincts, &/or for going for a 2nd opinion!!!!!!!!! NO THERAPISTS ANYWHERE SHOULD EVER DO THAT!!!!!
My whole life I was thought to take crap in silence & to just go on & say nothing!!!!!!! And, when u do that the bad folks out there continue to be bad & to hurt other folks!!! Silence hurts us all!!!
Those doctors offices, & that therapist needs to know the truth & the results of their actions, & they need to be called on it!!!
The biggest problem out there with people like us, is that their is this way of thinking that once we’re damaged–esp in our brain anywhere, that we NO LONGER HAVE ANY SENSE, THAT WE’RE NOW STUPID, RETARDED, & WORSE–JUST PLAIN CRAZY & OUT OF OUR MINDS NOW!!!!!! THAT WAY OF THINKING BE-LITTLES US ALL, DEMEANS US ALL, & IS USED TO SILENCE US ALL!!!!!!!! IF THEY CAN MAKE U THINK UR CRAZY, OR DOUBT URSELF IN ANY WAY, THEN THEY KEEP U SILENT & THEY WIN!!!!! I DON’T EXCEPT THAT!!!!!
THERE’S NOTHING WRONG WITH CALLING THEM ON THEIR ACTIONS & DEMANDING BETTER, OR REPORTING THEM WHEN THEY ACT BADLY!!!!! ALTHOUGH IT IS BEST TO DO IT IN A VERY STERN, DEMANDING, STEADY TONE! DON’T LET UR EVIL SIDE/TWIN TAKE OVER–LOL U CAN BE ANGRY & STATE THAT U R ANGRY–W/O HITTING, THROWING, SCREAMING, ETC……
At any rate I have had my say with 2 of them, & the 3rd 1 will get theirs!!! And, in the mean time–I will make my formal complaints, & I will go on with this new doc, & these tests I have coming, & my therapies!!!! I called & scheduled my therapies yesterday!!!! I have all 3, 1 rt after the other, in a row, starting on June the 9th!!! My MRI is scheduled for the 5th. My EEG for the 19th! & then I go back to see him in July!!! So it may be a while b4 I get all my answers! But, in the mean time, I will be doing it 1 piece at a time, & be working on therapy in the mean time.
And, in the mean time–the HD will be back out here on the 11th. So, if I can’t find anybody to help us with the drain field, then we will be getting a court date from the court. My therapist said just do the best I can, & let it go to court if I can’t. She said that she has no doubt in her mind that the judge will do rt by me. Like she said, u got disabilities, u got disability income. Ur doing the best that u can, & the judge will see that.
In the mean time, my neighbor better keep his bullets & his Pits on his property!!!!! Because I’ll b the 1 calling the police dept all day everyday, & animal control all day everyday to demand that they do something about him!!!! He’s such a hothead, always shooting off–at the mouth, with the gun, with all his other noise, etc…… I figure if I give him enough rope he’ll hang himself with it–sooner or later!!!! In the mean time, we going to see what we can do to get our property searched for any bullets & when they r found–we will mark them; then we will call the cops & file a report & have his ass arrested!!!!!!!! Then I’ll be the 1 with the upper hand.
The irony of the whole situation is: when his pit attacked my dad, if I had sued him, I would have had the money for the drain field!!!!! & his other one tried to bite my son. So, in the mean time, I’m going to contact a lawyer & see if we have any rts–where the dogs & shotting r concerned!!! See if we can sue him for any of it!!! The only way to deal with this guy is to deal with him on a legal level!!!
In the mean time, we’re just going to try to find a buyer for our place. & if we get kicked out of this house, then I will find out if we can put a MH on the other 2 acres here, & if we can, then we will just do that & try to make that payment. Because if we have to move out of here & then pay taxes on this property & keep it up while we’re paying rent & utilities somewhere else–that will just be insane!!!
If that happens, I will just try to get a MH put next door, & us still live on the property, & then just spend the same money we’d have to spend in rent on the MH payment! And, that way I can have all my dogs!!! & keep an eye on the place–& it will make selling a lot easier!!! And, then maybe we can just sell the house & acre AS IS, WITH DRAIN FIELD NEEDED, get what we can out of it, then use that to pay off our MH……..
I’m just coming up with ideals & to put in the pot & try–1 ideal at a time. That’s all I can do!!! At least the judge can look at all of it & say that I’m trying/that we’re trying!!!
Also, in the mean time, Charles has offered to help Cody get back on at Food City–close by the house. So, when he does that, then I’ll try to get him & Cody to get me on there also, so I can at least get some part-time pay coming in. Because we’ll need the money to make the MH payment, or to pay rent–whatever the judge says!!!!
And, I will just continue to work on the house, & continue to read & study & try to structure my life differently & to structure my time differently. But, I will have to work it around all the crap!!!! WOO THAT WILL BE FUN!!!!!! HELL MY HEAD’S JUST SPINNING AT THE THOUGHT!!!!! SO MUCH THERAPY, MOVING, COURT TIME, WORKING ON MYSELF & SOOOOO LITTLE TIME!!!!!!
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Re Docs;
First off understand the business of medicine – doctors are paid to diagnose and ideally treat you (or if surgeons they are paid to cut). Neurologists MAY be able to diagnose that there was a concussion or a blow to the head or a neuro-electrical or neuro-chemical abnormality – but that’s about it. They can’t treat TBI and they do not have the tools to specifically say ‘you have a tbi’. Again, let me repeat – Neurologists do not know much (if anything) about TBI. They know about epilepsy and about neurological impairments such as Parkinsons or MS – and they can provide some treatments and regular evaluations but they can do NOTHING for a TBI. THERE ARE NO MEDICAL DOCTORS WHO TREAT TBI.
Thus, TBI is seen as a ‘psychological’ or psychiatric issue – but it is NOT – though some of the symptomology is similar to TBI AND it may produce psychological issues but the root cause of TBI is injury to neurons which causes malfunctioning of cognitive processes (and emotion is a cognitive process). It particularly affects certain functionality. The treatments for tbi are protracted and do not necessarily show a strong cause/effect. Sometimes brains heal in 6 months, sometimes in 6 years, sometimes not at all. There is no way to know this.
BB is correct – while a doc may be terrible, misdiagnose and treat you poorly in some fashion – your response is best if you a) explain calmly, clearly and in a brief fashion EXACTLY the issues that you have, b) what you wish done or what you will do – that is if you want an apology, a referral, another test, if you will switch docs, sue them, write a letter to the AMA etc. Know what you want.
Then just do it – don’t go back if you don’t like the doc. Don’t need to scream or yell or reiterate all your justifications – this is going to fall on deaf ears. Don’t waste your time and energy on that. Find another doc and move on.
But be aware – expecting most any doc to understand tbi is going to be frustrating. There is nothing to treat with tbi – there is no drug, no chemical therapy etc. Docs do not give neuropsych evals, they do not do cognitive rehab, they don’t know how to deal with this, or distinguish it from a psychological illness. (and they don’t know much about psychological illness either). So they are not going to get it, they are not going to help you. The neuro can rule out things like epilepsy and MS and other problems but if its TBI then you have to put together your own plan.
The existing healthcare system in this country is not equipped to address this in any other way.
And there is no yelling or shouting that will change that.
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I guess what I’m left with, after all this discussion — and lots of food for thought — is that we are really on our own. And in our case, that may be for the best.
Expecting the mainstream medical “industry” to understand and serve our needs is a little like expecting a doctor from, say, the Arctic Circle — who has never ventured out of that area, and has no practical experience with any other part of the world) to understand and meet the needs of someone who has just moved from Finland to a tropical island and has become badly sunburned.
Maybe the doctor has read some things about bad sunburns, and maybe they have heard it mentioned in a class or two, but unless they have lived in the tropics, they’re not necessarily going to understand how to treat it, why to treat it, and how to advise their patient to deal with it. They won’t necessarily “get” the conditions that gave rise to the sunburn and result from it — e.g., needing to go out in the sun just to live your life, being exposed to different levels of sunlight at different times of the day, what sorts of clothing one wears in that climate, what sorts of activities are rendered impossible by a bad sunburn, etc.
They may have medical training, but they won’t have practical experience. and unless they have some sort of context or need to know or they have some pressing interest in it, they may never feel inclined to get that experience. And so, aside from prescribing a special creme to take the edge off the sting and reduce swelling, there’s probably not a lot they have to offer.
So, someone who spends a great deal of time in the dark each year when winter comes around, is probably not the best person to turn to for help with your terrible sunburn that developed when you moved from a climate similar to theirs, into a region that is completely different and foreign to them.
Likewise, trying to deal with doctors about tbi, when most of them are — literally or figuratively — in the dark, may turn out to be equally unproductive. And unsatisfying. And make us crazy/infuriated/outraged all at the same time.
On the other side of the coin, however, there ARE other professionals and organizations and individuals who can help us — not least of all, ourselves. In fact, I have to say that of all the experts I’ve turned to, I’m my own best friend and most valuable resource. Because I don’t have to convince myself that I’ve got issues, I don’t have to wrack my little brain for ways to communicate the severity and details of my issues to myself, and I don’t have to worry about whether insurance will cover my treatment. I can do for myself probably better than just about anyone — BUT I did need to get a reliable diagnosis from a reputable neuropsych to move forward full-force. And those folks can be located via Brain Injury Associations and other referrals, as well as asking around.
Bottom line is, the rest of the world may or may not be able to help us the way we want, so we need to do everything we can for ourselves… and then find productive and positive ways to identify and ask for the help we can’t manage to give ourselves right away. Maybe that involves seeing a doctor. Maybe that involves doing more research. Maybe that involves calling a friend for help. Maybe that involves more introspection and self-assessment. But the recovery and rehabilitation needs to start with us.
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I guess what I’m left with is absolute total confusion!!! I just started it all with saying, basically, that I am grateful that that there is much info available to help HI patients to understand their HI much better for themselves, & to help them learn things that they might not know!!! I am in the process of doing my best to fully educate myself on MY Head Trauma. I am going to many sites & reading much info…. as well, as trying to see what books r available out there, so that I might also get some of them & educate myself as well. Because I want to do the best self help that I can for my own–& also learn what I may need to talk to doctors about & what I need to ask for.
9 times out of 10 u/the patient, knows more about is wrong with them or going on with them than the doctors. & when u do know or feel like ur on the rt path, then u have to find a doctor who is willing to listen & to give u some credit for being educated & for having some sense!!! They don’t have to take ur word for it, they can do test, & do things to check it out. Because NO DOCTOR WILL EVER KNOW THE PATIENT THE WAY THE PATIENT DOES!!!! U LIVE WITH U, THE DOCTOR DOESN’T!!!
Because they sure as heck won’t know if don’t go to them & spell it out. I have to go to them & tell them the problems that I’m having & either get them to do whatever tests necessary, or to prescribe me some therapies, ie-OT, PT, ST, that kind of stuff. I can’t get those w/o going to some doctor & saying, Hey, I am having problems with this, this, or this, & I would like to have said therapies, can u prescribe them, OR can u do some test to see if there is perhaps something else going on.
U can say to them, something is wrong, something doesn’t feel rt!!!!!!!!! When I get that feeling or knowing, I am always rt about it. And, the universe gives u that knowing & feeling for a reason. So, that we can know & seek help.
And, for the record, I have had a few doctors along the way–a lot of them when I lived in a different county!!!–that have listened to me very well, & have acted on what I have said. Then, they checked it out! Then, they found out I was rt on. Then they were able to help me. Either with medications, or therapies, or tests, or whatever. They do exist, but WE HAVE TO WORK HARD TO FIND THEM!!!
THERE MAY BE OTHER PEOPLE WHO R WILLING TO EXCEPT LESS, BUT I WON’T/BUT I AM NOT ONE OF THEM!!! I can’t make other people seek out better help! I can’t make other people speak up for themselves, or advocate for themselves. All I can do is speak up about these kinds of things & ENCOURAGE other folks to speak us as well, & to SPEAK UP ABOUT WHAT IT IS THEY NEED–for their health–TO SPEAK UP TO DOCTORS & TELL THEM WHAT THEY NEED–TO SPEAK UP TO THE PUBLIC (education, or reporting bad docs, etc……..)
TOO MANY PATIENTS IN THIS COUNTRY R SETTING BACK & LETTING THE MEDICAL SYSTEM GET AWAY WITH NOT GIVING ADEQUATE MEDICAL CARE!!! TO MANY PATIENTS R NOT SPEAKING UP FOR WHAT IT IS THEY NEED, from doctors & from the system!!! TOO MANY PATIENTS R SITTING BACK & LEAVING ALL THEIR CARE & WELLBEING TO A SYSTEM THAT IS SCREWED UP ROYALLY & DON’T GIVE A CRAP!!! IT IS A FOR-PROFIT SYSTEM!!! & AS LONG AS IT IS, PATIENTS WILL BE ROBBED OF GOOD HEALTH CARE!!!! THAT’S A FACT!!!!
IT IS ALSO A FACT, THAT WHEN 1 PERSON SPEAKS UP OR OUT AGAINST SOMETHING BAD OR WRONG, THE PUBLIC OR GOV DOES NOT LISTEN OR CARE, & THINGS DO NOT CHANGE!!!! HOWEVER, IF A 100 PEOPLE SPEAK UP, OR A 1000 PEOPLE SPEAK UP, ETC……. THEN THEY START TO LISTEN & TO PAY ATTENTION!!!! WHEN THEY START TO PAY ATTENTION–THINGS START TO CHANGE!!!!
When MS 1st started in patients, doctors believed that it was all in their heads, that they were crazy, etc….. & sent them home or to a mental ward. But, after enough patients complained about the same thing & the same symptoms, & insisted that there was truly something wrong & something going on Doctors finally started to listen & to study it!!! Then, finally they came out with the MRI & doctors could actually see that there was something wrong & that it was real. Now doctors pay more attention. They understand far more about it, because PATIENTS HAVE EDUCATED THEM!!!!! MOST OF WHAT THEY KNOW, ABOUT SYMPTOMS, ETC…. HAVE COME FROM THE PATIENTS…….
THEY DON’T GET TBI!!!! THEY DON’T UNDERSTAND IT!!!! But, that doesn’t mean that they cannot be told all these things by people who do have it!!!! THAT DOES NOT MEAN THAT WE CANNOT STRIVE TO EDUCATE THEM, OR TO FORM GROUPS & EDUCATE OTHERS, & it does not mean that they can’t perform any needed test, or send u for some therapies that might help some or give u some much needed relief. Just because they DON’T HAVE A TBI & DON’T TRULY UNDERSTAND IT DOES NOT MEAN THAT THEY CAN’T DO SOME THINGS THAT WILL HELP IT/US!!!
That is why we have to EDUCATE OURSELVES–EDUCATE THE PUBLIC–EDUCATE THE DOCTORS/SYSTEM/THERAPIST (all therapy related people), ETC…….. THEY LEARN FROM US!!!! THEY WON’T LEARN CRAP IF WE DO NOT TELL THEM OR EDUCATE THEM!!!!! IT IS OUR RESPONSIBILITY TO TELL THEM WHAT WE NEED THEM TO KNOW OR TO UNDERSTAND–ABOUT US, ABOUT OUR INJURIES, OUR DISEASES, OUR HEALTH, ETC….. WE HAVE TO TAKE RESPONSIBILITY FOR THAT!!!!!!!
At any rate I just said that I was grateful for the info. about TBI/HI that I was finding here. & I thought that maybe I should say that I am one, & that I to struggle with the after-effects of this kind of trauma. Because some other survivor might see that they r not the only ones struggling; that others of us also r, & that I might say something that they might relate to & vice versa!!!
After that, I don’t understand anything until the one where u say/agree that doctors like him r dangerous & should b reported!!! I mean, in that one you act like you totally agree, & like you too believe that this doctor may be one that needs reporting!!! You talked yourself about ripping some new ass’s! I just came back & said that I loved what u had to say on that one, & to say that we agree on that!!! And, that I too have had those moments where I’ve either ripped one or wanted to. Everybody has those moments, NOT JUST HI/TBI’S!!! It’s just human! & quiet frankly there are truly some people in the world who need a new one ripped!!!!!
Like out-right, blatant quacks–who INTENTIONALLY DO THINGS TO HARM OTHER PEOPLE, OR PATIENTS W/O ANY QUALMS OR MORALS ABOUT DOING SO!!! QUACKS R QUACKS, CRIMINALS R CRIMINALS, & I don’t know what any of all this other stuff has to do with that??? It doesn’t matter 1 iota if a doctor, or the medical field understands TBI or not if I’m talking about an out-right QUACK!!! Anybody can look at this doctor–even other doctors r looking at this & going “what the hell is going on with this doctor, & why is he telling patients all this & doing all this to them???” Even that group of doctors is discussing his bad conduct!!! Even, they, think that this doctor is doing something wrong & unethical!!!! And, when I had talked to my sleep doc about it–b4 I had went to this doc–even he thought this other doc was off his rock!!!! Even he questioned where this nut was coming from.
Fact is: most good doctors don’t want the bad doctors practicing, because it’s bad business for them!!! And, if they r docs, who truly care about patients & their welfare, then they don’t want some screwball out there killing & destroying patients & calling himself a doctor!!! It bothers them morally!!! & it also bothers them because they r left to clean up the bad doctors messes!!!! Just like this new Neuro said, a lot of patients r coming to them from this nut-job’s office & now they having to do exams, & perform tests, etc……–to not only find out what is wrong with these patients, but to also have to reassure these patients that this is not the case. Because–once a doctor puts something awful like that in ur head u cannot get it out until u have proof, or some validation that this is not the case, & that u r rt!!!!
I have done my homework. I moved away from that nut, & got me some other opinions–which more than back up my gut, & my instincts. And, for any of us to encounter doctors, therapist, etc…… like that & to not speak up or report that person–for any of us to just move on & not say anything & to allow other innocent people to fall victim to this & not say anything, is just down right IMMORAL!!! Further more, it’s illegal!!!
Even the law says if u see a criminal in action, doing wrong, & hurting other people, & u go on & do nothing then u r committing an illegal act & can be held just as responsible as the person committing the act!!! If saw somebody being attacked, beaten, mugged, etc…. while u were walking dn the street & u did not–either try to help them personally, OR try to call the police & get them to come help–then u r no better than the person committing the act, & the police will hold u accountable, & will also prosecute u–if they find out, or know!!!!
That doesn’t mean that u have to do hand to hand combat, but u do have to at least call & report the crime, & ask for help!!!!
I do not spend all my time worrying about that, or obsessing over that, but I do believe that when it comes up rt in front of ur face, that u need to deal with it. I KNOW FOR A FACT, THAT REPORTING A CRIMINAL/QUACK IS THE RT THING TO DO!!!!! IT IS THE MORAL THING TO DO!!!!! My conscience would not let me rest if I don’t speak out against this crime!!!!! Because it is not only a crime against me–it is a crime against humanity in general!!!!
And, just because I have made a choice to advocate for myself, to speak up for myself, to do something that is absolutely rt & moral does NOT MEAN, that I am just going around foaming at the mouth about it 24/7 &/or that I’m not doing other things; &/or that I’m not doing many good things to take care of myself or my TBI stuff!!!!!
If I were just spending all my time on that crap, then I wouldn’t have spent time & wasted time on a 2nd opinion!!!! I would not be doing these up-coming tests. I would not have asked him, & have already scheduled PT, OT, & ST for myself. As well, as doing tons of self-educating, & trying to work on self-therapy–trying to figure out where my deficits lye, or figuring out what I can do for my own problems or deficits to help them!!!! That’s how I got this site to begin with–because I WAS LOOKING FOR EDUCATION & FOR THERAPIES THAT I CAN DO FOR MYSELF!!!!
MANY PEOPLE JUST SET BACK & TAKE WHATEVER LIFE THROWS AT THEM & JUST EXCEPTS IT, & JUST EXPECTS THE SYSTEM TO CHANGE ON IT’S OWN, OR THE DOCTORS TO MAGICALLY KNOW WHAT IS GOING ON WITH THEM OR HOW TO FIX IT. THEY NEVER SPEAK UP. THEY NEVER EDUCATE DOCS, OR OTHER PEOPLE.
I know 1st hand that people speaking up–about what is wrong with the system (any system), & saying what is wrong, & having tons of ideals for positive changes MAKES A DIFFERENCE!!!!!!! As I said once, My Son & I were apart of SOLUTIONS!!! HEALTHCARE–HOW PEOPLE DON’T GET GOOD HEALTH CARE OR ANY HEALTH CARE–HOW PEOPLE CAN’T GET NEEDED TESTS, NEEDED MEDS, NEEDED THERAPIES–HOW WE NEED TO HAVE MORE LAWS IN PLACE TO WEED OUT BAD DOCTORS, ETC…………..
We worked on all that, plus many other important issues–like the amount of pollution that is being put out in our state, & how that is causing much death & diseases here. Etc…….. THINGS CAN CHANGE & DO CHANGE!!!!!! BUT PEOPLE HAVE TO SPEAK UP & SPEAK OUT & THROW TONS OF IDEALS TOGETHER & LEARN FROM EACH OTHER!!!!!!!! THAT HAVE TO FORCE CHANGE!!!! CHANGE IS LIKE FREEDOM–IT DON’T COME CHEAP!!!!!!!
If someone were to tell me that standing up for myself, or to advocate for myself, or to report criminal activity, or to try to get rid of bad doctors & educate good doctors; or that doctors or the system cannot possibly be changed or educated; is wrong, then that would be like telling a soldier that he should not fight for freedom or injustice!!!!!!
If we want justice we have to fight for it! If we want freedom then we have to fight for it! If we want peace, then we have to fight for it. Having said that–I do not believe that we have to shed blood & kill tons of people to get it!!!! I believe that there r non-violent ways to say things & to try to work things out!!! That should always b tried 1st!!!!!
I DO NOT EXPECT ANY PROFESSIONAL–OF ANY KIND, TO FULLY UNDERSTAND TBI/HI, OR MS, OR DIABETES, OR CANCER, OR WHATEVER!!!!! NO PROFESSIONAL CAN UNDERSTAND ANY OF THOSE THINGS UNLESS THEY THEMSELVES HAVE EITHER HAD IT OR HAVE HAD A CLOSE LOVED ONE WHO HAS HAD IT!!! I.E. A SON, DAUGHTER, PARENT, BROTHER, SISTER, ETC………
AND, WHETHER OR NOT THEY UNDERSTAND ANY OF THAT HAS NOTHING TO DO WITH WEATHER THEY R HURTING, KILLING, MAIMING INNOCENT PEOPLE FOR DRUG MONEY–KICKBACKS FROM DRUG COMPANIES TO TELL PATIENTS THAT THEY HAVE THINGS THAT THEY DON’T HAVE SO THAT HIGH DOLLAR DRUGS CAN B BOUGHT BY PATIENTS OR INS….. THEREFORE MAKING THE DRUG COMPANIES RICH!!!!!
Those 2 doctors offices r in cahoots together. They r letting real health issues go untreated while lying to patients & telling them that they have some money making disease or illness–& then putting them on drugs that r real money makers for the drug companies!!! They tell patients that they have some lifelong illness, injury, or disease that will require them be on lifelong medications–therefore selling tons of drugs for the drug companies. That’s a fact!!!! It goes on all the time!!! And, these doctors r getting tons of money slipped into their pockets for doing it!!!!!!
THAT’S A CRIME!!!!!! THAT’S ILLEGAL!!!! THAT NEEDS TO B REPORTED, BY ALL PATIENTS!!!! THE MEDICAL SYSTEM & GOV IS GOING OUT OF IT’S WAY TO CRACK DN ON PATIENTS WHO ABUSE THE SYSTEM OR USE DRUGS!!!! YET WE LET THE DOCTORS GET AWAY WITH DOING THE SAME CRAP!!!!!!! IT’S JUST AS WRONG FOR THEM TO DO IT AS IT IS FOR PATIENTS TO DO IT!!
AND, IF THEY CATCH A PATIENT DOING THAT CRAP THEY WILL TAKE ALL THEIR INSURANCE AWAY FROM THEM, CHARGE THEM, & PUT THEM IN JAIL. NOT TO MENTION HAVING THEIR FACES PLASTERED ALL OVER THE NEWS HERE. YET DOCTORS DO IT ALL THE TIME & GET TO KEEP THEIR LICENSE A LOT OF TIME & GO ON DOING THE SAME OLD CRAP. THESE DOCTORS NEED TO LOSE THEIR LICENSE!!!!!! THEY NEED TO BE HELD TO THE SAME STANDARDS THAT SOCIETY IS HOLDING THE PATIENTS TOO!!!!!!
THAT IS WHAT I AM SAYING!!! AND FURTHER MORE–THINK ABOUT THIS–WHEN WE DON’T SPEAK UP & GET RID OF THESE BAD APPLES, THEN THAT IS BITING US IN THE BUTT–BECAUSE OUR HEALTH CARE SUFFERS EVERY DARNED TIME WE HAVE TO SPEND TONS OF OUR TIME, STRESS, & HEALTH WADING THROUGH ALL THE BAD ONES. EVERY MINUTE THAT WE HAVE SOMETHING LIFE ALTERING OR LIFE THREATENING, OR ARE IN REAL NEED OF THERAPIES & HELP & ALL THIS TONS OF TIME GETS WASTED ON BAD DOCTORS & UN-NEEDED TESTS–& ALL THE TIME IT TAKES FOR THOSE TESTS–THAT WHOLE TIME WE R SUFFERING NEEDLESSLY!!!!!!! WE R GOING W/O PROPER OR ADEQUATE HELP!!!! WE R SPENDING TONS OF MINUTES & DAYS OFF OF OUR LIVES BECAUSE WE R WASTING THAT PRECIOUS TIME ON DOCTORS THAT DON’T DESERVE THE AIR WE BREATHE!!
WHY NOT SPEND THAT TIME ON THE GOOD DOCTORS??? THE GOOD THERAPIES??? WHY NOT SPEND THAT TIME DOING OUR OWN GOOD THERAPIES & EDUCATION, & PROBLEM SOLVING FOR OURSELVES????? TO DO OTHERWISE DOESN’T EVEN ADD UP OR MAKE LOGICAL SENSE TO ME!!!!
A DOCTOR DOES NOT HAVE TO UNDERSTAND MY TBI FOR ME TO KNOW WEATHER HE/SHE IS A QUACK OR NOT!!! A DOC DOES NOT HAVE TO UNDERSTAND MY TBI TO BE A CRIMINAL, OR TO GET AWAY WITH IT. A DOC DOES NOT HAVE TO UNDERSTAND MY TBI TO GIVE ME SOME TREATMENTS OR TESTS, OR THERAPIES THAT CAN GREATLY HELP ME!!! A DOC DOES NOT HAVE TO UNDERSTAND TBI IN ORDER TO BE A QUACK OR TO BE REPORTED FOR BEING SUCH!!!!!!!
I DO NOT EXPECT ALL DOCTORS OR THE OVERALL SYSTEM TO UNDERSTAND TBI, OR TO UNDERSTAND IT THE WAY THAT WE PATIENTS DO!!!! I NEVER SAID THAT–PERIOD!!!!!!!
I SAID–THAT ALL BAD DOCS/QUACKS NEED TO BE REPORTED–& WHEN WE DO MAKE COMPLAINTS, THEY SHOULD B INVESTIGATED & IF THE DOCTOR IS DOING WRONG THEN THE DOC SHOULD HAVE HIS LICENSE REMOVED!!!
I SAID–THAT WE-AS PATIENTS NEED TO STEP UP TO THE PLATE, & DO THE RT THING BY REPORTING THEM!!!
I SAID–THAT WE-AS PATIENTS NEED TO GET OUT INTO THE COMMUNITY & DO OUR BEST TO EDUCATE–OTHERS WHO DO NOT HAVE THIS PROBLEM ABOUT WHAT IT IS LIKE FOR US–ABOUT WHAT IT IS LIKE TO LIVE WITH SUCH–ABOUT WHAT OTHERS CAN BEST DO TO HELP US, TO UNDERSTAND US–TO NOT BE AFRAID OF US–TO UNDERSTAND THAT WE R JUST HUMAN, THAT WE MAY BE CHANGED BUT WE R NOT FREAKS, WE R NOT CONTAGIOUS, WE R NOT STUPID, WE R NOT DEAF, WE R NOT BRAIN DEAD, WE R JUST CHANGED!!!!! AND THAT CHANGE CAN B GOOD & POSITIVE IF PEOPLE UNDERSTAND THAT DIFFERENT DOES NOT MEAN BAD!!!
WE HAVEN’T BECOME BRAIN DEAD IDIOTS JUST BECAUSE OUR BRAINS FUNCTION DIFFERENTLY!!!! I HAVE MADE A 4.O & GOT ON THE DEANS LIST, SO I AM NOT UNINTELLIGENT–JUST BECAUSE MY BRAIN NOW FUNCTIONS DIFFERENTLY. My son & I r Dyslexic & LD, we have high IQ’s. But we r not idiots or stupid just because we learn differently!!!
Teachers who don’t have LD’s may not understand what it’s like to have it, but they can b educated as to how it works & as to how difficult it is for us that do have it. They can b educated as to how we learn diff….& change the way they teach us something!!!!! They can learn to respect us & not treat us like we r stupid idiots who cannot learn anything!!!! To say otherwise would b ridiculous. There is a tape called FAT CITY!!! It is a tape of a guy demonstrating fully to a group of teachers & other professionals what it is like for a LD person!!! He makes his points very well. He puts them institutions that make them feel the exact way they make us feel. When he does this, they feel just as frustrated, just as helpless, & just as disabled!!!!!!
It is a wonderful tape!!!! And, things just like that can be done to educate doctors as to what it is like for a Brain Damaged person!!!!!!!!!! There r ways to educate them that can make them understand–to the best of their ability. At the very least it can make them understand how difficult things r for us–to a large degree. It can make them understand that we need much help & understanding that we r not getting. It can make them understand that they need to more research, that they need to come up with more tests, they need to be more compassionate, & do more to help us.
They r already setting up & taking a close look at TBI patients now!!! It’s becoming main stream news now!!! More research is being done now!!!! NOW IS! TIME FOR US TO BE HEARD!!!
For the record–I do not dominate all my time & effort on that!!! I divide up my time on many many many different things!!!!!!! The majority of my time is spent trying to figure out ways to help myself!!! I also spend much time with my dogs!!! I also spend much time structuring my house–cleaning, organizing, remodeling, making repairs, etc….. I also spend time mowing. I take walks. I spend time reading & educating myself!!! I spend time with my son!!! And, quiet frankly, rt now, I’m having to spend much of it trying to find somebody to help us with a drain field–so we won’t be kicked out of our home!!!! I’m having to focus much time on that & a dangerous neighbor–even my therapist thinks he’s a dangerous nut!!!!!! So does my son!!! So, it has nothing to do with my TBI, or MY interpretations.
I haven’t somehow misunderstood him–due to my TBI!!! If so, then my son is in the same boat! Rt now–what is most important to me–over the stupid doctors, over reporting them is: getting the DF situation straightened out!!! Not being fined or barred from my home!!! And, getting all the test done that my doctor & I have planned out together!!!! And, going & doing my therapies–at the hospital (OT, PT, ST)…….
Reporting & educating will come below all of that!!! But, it is on the list & it will come!!! Rt now, I need to take care of my health, get the care I need & deserve, & try to get my place in the best shape possible, so that I can make a move that I want & deserve, & so that we can live like normal human beings in the mean time! A house that constantly needs repair & stresses u out or drains u financially cannot be good for TBI–or for any other human being for that matter. If we get it tended to then we can live with less house stress, & less financial stress. & we can be healthier!!!!
I can honestly say that–being rid of those bad apples, & having a new doctor, & getting another opinion, & getting the tests that I have needed for a while, & getting the therapies prescribed–that I have needed for a while make me a very upbeat, very happy human being!!!! I cannot begin to express how happy it makes me to have a doctor who believes me, who thinks that I DO NOT HAVE SEIZURES, & who is willing to do needed test & therapies!!!!! IT HAS TAKEN A HUGE LOAD OFF MY MIND TO HAVE THAT STRESS TAKEN OFF ME!!!
I CAN HOME A COMPLETELY NEW PERSON!!!!! I CAME HOME FEELING LIKE I COULD NOW HANDLE ANYTHING & TAKE ON THE WORLD WITH NO PROBLEM!!!!!! I HAVE A WHOLE NEW OUTLOOK ON LIFE!!!!!!!!!! I AM REVVED UP & READY TO TAKE LIFE BY TALE!!!! I AM BRINGING NEW WAYS INTO MY LIFE!!! I AM BRINGING POSITIVE CHANGES INTO MY LIFE!!!! I AM RESTRUCTURING MY LIFE–IN A WAY THAT WILL BENEFIT ME BEST!!!
I have spent my life taking care of others, it is now time for me!!! I’m taking the bull by the horns!!! I’m looking at what I need to change or want to change, seeing how I can best do that, & then trying to implement that. It will be a lot of trial & error!!! I’m seriously considering starting a group for people for HI’s!!! A group where we can talk about the deficits & problems that we have from it, where we can talk about what has helped with those, & where people actually want to educate & incorporate change. Educate people, get laws changed, come up with our own therapies, etc…..
But, rt now, Drain Field/Court/Staying in home 1st. Tests, & therapies at the hosp.,etc… next. Talking to doc & putting it all together 3rd. & in the mean time, reading a lot & doing some self-therapy of my own. While continue to work on a much needed income!!!
Now, enough of this topic. I would like to move on to the Giveback Orlando book. I have been doing much reading on it. I think it makes good points, but I also think it stupid on some things. My son feels the same. Some of the problems that he brings up that BI”s have I totally agree with. But, I do not agree with all that he says or all the ways that he talks about doing self therapy.
Like my son says that he & the people he works with & the people that come in the Restaurant have & do the same things. & he thinks that many of the recommended self-therapies r insane. & DUH!!!!!
But, everybody will get something different from it. I will take what I think is very informative & very helpful & apply it. I will take some of the therapies & alter them just a bit to fit my deficits & my life. Each person has to adapt things to their own life & own problems!!!
At any rate I’m reading that & studying that–amongst other things, & I am seeing what I can get from it & what I can use to my advantage & adapt to my life. My life is what it is, & I can only do what I can do. If 50% is the best that I can do & I’m happy & okay with that then that is fine for me. I don’t have to make other people happy, I just have to make me happy. No one can decide what another thinks or what is best for another person. Only that person can decide that.
I have appreciated our discussions!!!!!!! I do hope that u take good care of yourself!!!! I do hope that things go really well for u!!!!!! I wish nothing but the best!!!!!!
I now need to spend some much needed time outdoors & with my 2 dogs outside. And, I have some projects that need my attention. I am really kicking butt on my house!!! It looks tons better, & I feel better for it!!!! And, I have some reading & studying to do later.
Have a great day!!!!!!!!!!!!
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Holy smokes, Dream Chaser… Sounds like things are really picking up for you. Best of luck with that house business — and life in general. I’d love to respond to everything you said, but my wrists are tired, and I need to take a much-earned break from my day.
Write again soon and have fun with your dogs — and studying!
Cheers
BB
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Hey, I hope this is still going strong. I didn’t see any 2014 entries. I had my first TBI experience when I had a prophylactic double mastectomy and the people at Tucson Malpractice Center (also known as TMC) told me I was ‘fine’ after a huge shot of morphine to use the bathroom alone (2007). I fell and hit the floor hard and passed out. They literally yanked me up, gave me smelling salt and did no follow up and tried to get me home ASAP. Then we fought about my records. I kept falling and getting agitated for no reason for about 7 months.
Then the big one hit Gran Mal Seizure in So. Calif. Hit the ground on asphalt with no warning. I was told (do not remember) that I said my name, my kid’s name, I love the Rolling Stones and I wanted to have sex with Dick Cheney. (Being in south Orange County the paramedics thought that WAS FUCKING NORMAL!!!) My son, thank God and the Goddesses of intelligence at age 13 said “THIS IS NOT MY MOM” She hates Dick, she hates the wars, she is NOT OK and refused to leave my side. They reluctantly put me in an ambulance and the CT scan at the local hospital showed too much blood.
So, I was airlifted to Trauma One in Mission Viejo. Ten days later they did brain surgery…I guess they listened to my husband who was scared of me having a surgery. But I had a midline shift, epi and sub hematoma. Not good. Broken cheekbone, occipital lesions, broken teeth, broken sinus area, and massive damage to frontal lobe and right temporal lobe.
I had a 10% chance of survival but I kicked butt and survived. (It was on Obama’s birthday…I knew I would be home free~sorry for anyone who is political and doesn’t like him but for me it was critical that I had a sign that would help me).
Then the problems began. First seizures and 8 different meds, 3 doctors and total depression. Godson hung himself the day I was able to come home to Tucson. Full blown nightmare, I practically raised him as his mother worked full time. Then his best friend, my other son, started drugs to ‘fight the pain’. I truly thought I was crazy and contemplated taking my life…I wanted no more pain. Lost my job, lashed out…especially at my dad because he was having an affair WHILE MY MOM WAS DYING. So he is now FOREVER out of the picture. So is my loser brother. A handful of people still saw my soul never gave up on me (I worked with refugees and torture survivors and was told I was very compassionate and kind).
Now I have sleep apnea, and 3 of the screws on my plate are loose and the headaches are unbearable. (Yes, I fast forwarded 6 years, 4 I have no memory because my oldest son was murdered by thugs in the drug world. I lost my mom, best friend to BrCa, two kids of my son’s friends, and my Godson). Two years of trying to be normal. My relative once said to me the day after she saw a seizure. “Can you fake a seizure”. I looked at her like she was on the moon…I said “NO, I FAKE FEELING GOOD”.
I have to get better, I want to get better but my ‘edit’ button doesn’t work and I can be so inappropriate. I was even kicked out of grief therapy for my son’s death!
If anyone out there has ideas about the screws loose (they are breaking my scalp and I don’t want any surgery, please comment. If you email me, use TBI as your Re topic. I am better, I am singing now in a nice place where only 50% hate me when I stormed out of a song about suicide. Too close to home for me. I also walk a LOT with music. Stones help me with Emotional Rescue and 19th Nervous Breakdown…ha!
Thanks for reading this,
Still Surviving
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Hey, yes, we are still here. I’m glad to hear you’re still surviving, because that is a hell of a story you’ve got there. I am truly sorry you have had to go through all of this – it never ceases to amaze me, how some have so much on their plates, while others “seem” to have relatively little.
For the loose screws, I don’t want to be flippant, but can’t they be screwed back in without surgery? I know nothing about this, but it seems to me that you should do something, because of your headaches and them breaking your scalp. That doesn’t seem right. I really wish there were an advocate who could work with you — we all need them. Seriously, we do. Especially those of us who struggle with the kinds of things TBI brings along with it.
For the loose screws situation, in your shoes, I would google “loose screws in head plate forum” to see if anyone out there online is discussing this and what might be done about it. There are sites out there where docs give you their opinion for free, but I can’t think of any off the bat — Google might help you there. Also, the TBI/PCS forum on Psychcentral can be helpful http://neurotalk.psychcentral.com/forumdisplay.php?f=92 — I’ve seen a lot of good advice there. Who knows, maybe someone there can help?
I hear you loud and clear about faking feeling good. No way I’m as roughed up as you, but I’m pretty much there, myself, most days lately. But there’s no point in me dwelling on it, because everything passes and then my lousy short-term memory forgets all about what I was so upset about, and anyway, me going into all the details with folks just sounds foolish to people who cannot see what’s going on inside of me.
Good luck with everything and keep checking in. There’s activity going on here, for sure.
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Thank you thank you thank you for emailing me. I don’t feel alone…Yeah, my story was rough (is rough) but not as much as others. (I am friends with Gabby Giffords~shot in the head, my US Representative. She is my inspiration as is Mark, her husband. I knew 13 out of those 19 shot, then 6 weeks later my son murdered. But working (well, before, now I am stuck on SSI) with Survivors of Torture really gave me strength. THEY HELPED ME, and were from all over the world. I am pretty much a loner now but used to be the Tina Fey, Gilda Radner life of any event. I will check into the screws thing. One doc wants the whole plate out but that leaves my brain completely exposed with just a flap of skin over the area….
I always knew I had a few screws loose but this is ridiculous! Bev~Still Surviving
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A few screws loose… ha! That’s funny. A bit of the Gilda Radner sense of humor coming through, no doubt.
Working with others is so important. It’s one thing that can save us.
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If I don’t make a joke about it, I am truly doomed. 🙂 Yep, that was my nickname until it changed to Tina Fey when I did Sarah Palin imitations. And I tell everyone Dick Cheney saved my life! No luck on loose screws but I will get an answer with a nice retired friend who I worked with who was a neurosurgeon. I swear I could balance a watermelon on the size of my bumps. What was your story if it is OK to ask? Bev~Still Surviving in TooMuchSun AZ.
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