Sunday, October 17, 2010

Brain Glitches Getting Worse and Bending Over Is Not Good For My Brain

Well, I got a letter in the mail today from the military.  My assigned Doctor is no longer my assigned Doctor.  They have reassigned me to another Doctor.  I do not want to see anymore Doctor's, but my health problems are getting worse and my husband really wants me to see someone.  My brain glitches are getting much worse.  I proof read things I type or even hand write and do not see the mistakes even when I read them out loud.  This is even happening when I run my finger along while reading a line.  I often do not see my mistakes after proofing three or four times.  Then about five minutes to a few hours later I will see the errors.  It's not just spelling errors, it's sentence structure problems as well.  I was never good in English and grammar, I had poor teachers in this area the whole time I was in school, except in the eleventh grade.  I had a creative writing teacher that realized I only had less than a fifth grade reading level and had no idea how to diagram a sentence or any of the rules of grammar.  He handed me a book near the end of the year and told me I needed to work on it myself as he didn't have time this late in my schooling to get me caught up.  He didn't know how I was passed or ended up with B's in English all the years I was in school. 
Some examples of my brain glitches include wanting to type the following words but other words end up on the page because of my brain glitches:
who often becomes how, or vice versa,
their often becomes there or they're or vice versa,
do becomes due or even no or vice versa,
I could make a really long list, but you get the idea.
I live out parts of words often such as:
I leave out s at the end of many plural words
I, instead of I've
it, instead of it's,
we instead of we'll.
I actually one day last week wrote down a list of all the mistakes I made.  I tore it up.  It was too depressing.  I told my husband this is really getting me down.  It makes me nervous because I wonder if I'm having mini strokes causing this.  My mother died from multiple strokes.  They never found out the reason of her strokes, though I think she was passing small clots from a hemangioma she had on her liver that her Doctor would never do anything about.  I sometimes wonder though if she had an undiagnosed atrial fibrillation problem with her heart which can cause small clots to form and go to the brain.
My brother already has a pacemaker defribrillator in because of this problem.
I told three different military Doctor's I thought I needed an angiocath to see if I had pulmonary hypertension and blockages in my heart because my heart skips beats.  Daily I have to do the Valsalva Manuever to get my heart back into normal beat at least once a day if not more often.  I don't drink caffeine, so I know this is not the reason for the problem. 
I have had people say it's related to panic attacks, but how?  I'm doing something I like and not thinking about anything worrisome and the irregular beats will hit and make me dizzy and nauseous.  I know how to do the Valsalva Manuever and usually the first time works to get it back in regular beat, but sometimes it scares me because it takes more than once to work, and I get weak and feel like I'm going to pass out when I have to do it more than once.
The irregular skipping beats even hit sometimes when I've almost fallen asleep or I've jerked myself awake with them, to sit up and do the Valsalva Maneuver.
I don't know if this is happening because of my Achalasia problem, where I have intestinal spasms.  Are these spasms affecting an area in the body in the intestines that can have a vagal response upon the heart.  Yes, I know that sounds weird, but as a former nurse I know that there's a part inside of the lower intestines that you don't want to stimulate too much or it can cause an unwanted heart response.
Yet, even as much as all this nonsense is going on with my body and I know I should get it checked out, I still don't want to deal with anymore Doctor's.  I am burnt out with Doctor's.  I have a fear of wasting my time and again not being listened to.  The truth be told, I get frustrated that what I have told Doctor's over and over has never been documented in my patient chart.  Yes, I have the notes, the labs, the surgery report etc..  We can get these for free from the military, we don't have to pay for the copies.
Truth be told, it wasn't even a military Doctor that sent me for the tests that finally diagnosed me via a civilian Doctor that read the results of the test that I had achalasia.
It was a nurse practitioner that saw me at the Military Base that I went to that finally after years of complaining of severe pain and ending up with aspiration pneumonia that sent me for the correct tests.  Thankfully she sent me to a hospital in my town for the tests and not at the Military Base.  Thankfully a non-military Doctor read those tests and said what the problem was and that it was extremely severe.
Yet, the military sent me to a specialist outside the military and he did nothing about it.  He said "Well, at least you can eat."  Yes, eat and end up with aspiration pneumonia.  That's really smart.  Then my husband asked this specialist if I could choke to death.  He told my husband "Yes."   He told me if I got tired of trying to eat to talk to the Doctor's at the military base about putting a feeding tube into my intestines.  Yet, he denied saying this to the military Doctor's when I told them what this Doctor had said.
Over a year later, I finally got the surgery I needed down where I could eat.  It helped for about two years and then I started having choking problems and lots of pain again.
Then another specialist they sent me to, was again a joke.  He wouldn't check part of my intestines where I'm constantly having pain, and just told me it's part of the achalasia problems.  That it's caused from a genetic nerve/muscle disorder. 
I feel like I'm falling between the cracks in the health care arena of life and why must I keep hitting my head against a brick wall of uncompassionate Doctor's who don't understand the physical pain I'm in.  I know people who have diabetes that get Social Security for the neuralgia's (nerve pain) they have associated with that disease, yet I can't get a single Doctor to listen to me that I can't do what I need to do to work because of pain related to numerous problems, some of which I do not think are only related to the achalasia.  I think I have multiple problems that should warrant me being able to receive what I've paid into.
One of my newest symptoms is the incredible pain I get in my head if I lean over to pick something up, or to pull weeds or pick up sticks or branches off the ground, or lean over to pick my little dog up.  This has been going on for about three months.  If I make myself keep going in about ten minutes at the maximum it will feel like the top of my head is ready to explode off.  I will have tears in my eyes because of the pain, and will have to do controlled breathing exercises to try and just get it back to a manageable level of pain.
I have to quickly sit down.  I end up holding my head up and steady with my hands.  My head literally pounds worse than the migraines I am prone to get.  The thing is the pain is gone in about thirty minutes if I just sit and don't lean over.
Then if I try to do any physical activity that requires a little bit of effort I will be drenched in perspiration in no time flat.  I don't care if I have the air conditioner on where it's cold, it will still happen.  I exhaust super fast.
Yet, once again, even with all this staring me in the face, I don't want to deal with these Doctor's anymore.  I don't want to deal with my husband telling me to see another one and maybe this one will listen and help.  I told him this isn't going to happen because all these military Doctor's talk to each other and they pass their opinions on to one another and the patient be  D________ (you can guess the word that's suppose to be here).  They aren't going to get the care they need because they are already seen either as a big joke, or a liar (because the Doctor's aren't the ones experiencing the physical pain so they somehow in their God Like Minds determine that you're not having pain because you somehow have learned not to cry in front of them each time you're at the Doctor's office), or one who is taking up too much of their valuable time or are too expensive to keep dealing with.  I think it's a combination of all of these factors.  Plus I think military Doctor's only think the valuable patient is the one that is active duty and serving currently in the military.  That's my opinion and that's the way I've been made to feel dealing with the military base I had to go to.  Yes, the insurance has put out quite a bit of money on me.  That's no lie.  I realize that if we had no insurance I would have long ago been dead from a choking incidence related to the achalasia.
Achalasia is still very painful for me.  I know after some people have the Heller Myotomy with the Dor Fundoplication Surgery they no longer have the incredible pains, but I still do.  I did have quite a bit of relief after the surgery for about two years, but then it came back and continues to worsen each and every month.
I still have the incredible back pain and I wonder why nothing is ever done about it.  Do I have a cavernous hemangioma on my spine pressing on nerves in there?  I've asked for a spinal tap to see if there is something in there causing the pain.  That's been a no go too.
I'm not a hypochondriac.  If I was I would be in the ER daily, at the Doctor's daily, with a ton of different illnesses, but no, these are the same pains and just getting worse, with new symptoms I think are interrelated in some way. 
The letter from the Military said this new Doctor that was assigned to me has my Doctor's notes and is familiar with the case.  I don't believe he can be familiar with my case since none of my complaints are listed in there.  The previous Doctor's never listed other than what they wanted to list.  I think that leaves other Doctor's in the dark, but maybe that's what they prefer.  Maybe they don't want to know what's wrong with you because it might mean they have to spend some of their free golf time doing research on their own time to do what's best for the patient.  Maybe it would mean they would have to go to or attend via online a new medical continuing education course to update them on new advances in medical care or little known diseases and they aren't willing to spend their free time expending some brain energy learning something new that may go against everything they were previously taught. 
I realize that medicine is not an exact science that new advances are being made each and everyday.  Yet, I feel like I get stuck with Doctor's that don't want to progress, but merely stagnate and earn a paycheck with little involvement.
Therefore, I think I'm going to pass for now on seeing any new Doctor's.  If that means I die from whatever is going on, well than so be it.  People can then say it's no body's fault but her own, yet they *these doctor's I've dealt with via the military base I had to go to*  need to realize they are truly the ones that burnt me out on Doctor's.
Remember I used to work as a nurse and I saw some really good and compassionate doctor's in the non-military base world that really cared about their patients.  I even saw one when I worked neurology that stayed by a patient's bedside for twelve hours straight with a patient that was dying of brain and spinal cancer to give the patient his pain medications himself per the family's request of this gentleman. 
I have great empathy for others in constant pain or other medical issues that  don't get relief or resolve from the medical community.  I feel your frustrations.  I feel your money issues, because we've had to pay deductibles on things too, especially when seeing Doctor's outside the military bases.  Then there are co-pays on medications and when pills are the things they keep throwing at you, being on several prescriptions at once can truly add up and then you wonder how you can buy groceries, or pay this or that bill.  We've been there.  I finally quit taking all the meds they were throwing at me because they weren't helping with my pains anyways. 
I'd like to say to all Doctor's that have patient's in pain.  Find out first what is causing the pain and find the right treatment to stop the pain before treating other issues.  We the people with the pain, want the pain treated first.  Life is miserable with PAIN.  Worry about the high blood pressure, the high cholesterol, all the other issues after you have helped the patient with their first and foremost primary complaint.  If it's not pain, then what is the patient complaining of, irregular skipping heartbeat, itching, heavy periods.
Please Doctor's listen to your patient's.  Don't form your own opinions until you've addressed what your patient's feel is their primary need.  If you do, then patient's lose confidence in you.  There will become a communication barrier between the two of you from then on. 
My primary need is I need to be on Social Security because I can't do what I need to do to make an income.  If something happens to my husband and it could because he's getting older, I'll probably end up living under a bridge just because of military Doctor's that I have to deal with.


  1. Im so sorry. You have so much to deal with health wise. Have you applied for SSI yet? You definately sound like you would be eligible given your health condition.

    I understand as well how hard it is to get dr's to listen to you. I have a family history of severe RA. There are days I can hardly make it out of bed. For 2yrs now I have been telling my primary care dr. But, they keep saying Im fine and too "young" to have RA. Cracks me up since I used to do RA walks every year for my Dad and his sister. CHILDREN have severe RA out there!

    Anyways, dont get me started on that band wagon!

    I will be praying for you that you eventually find some answers as to what is going on and that you will find a physician who will take the time to LISTEN/

  2. That thing you said about typing the wrong words...I totally do that. I also do that when talking!! I hate that you have to go to a new doc, it's like starting over :(

    Hey under your settings can you add the name/url option for commenting. A lot of times I don't comment on blogs if I have to log in with google, I know a lot of other people are the same way. All you have to do is click to allow name/url :).