Month: May 2011

I just have to wonder.  Never use to have trouble completing tasks, well maybe back in my school days but that was different, how many kids do you know who like homework or clean their rooms?

 
Fast forward to today, I have twenty + things to write and post here and completing them is suddenly a challenge?  My brain is okay, it functions properly so that’s not it.  I think part of the problem is I get called away from my computer for whatever reason, then being physically to tired to do much typing.  Just like now, my weak side is exhausted for NO really good reason it just hurts.  Typing one handed works, but painfully slow and my brain is already ten papers ahead of me!

 
M.S. sucks, nothing I can do about it, it will never leave me.  What I really need is a tape recorder for my brain, anyone have one?  No,  talking into one will not work it’s always noisy around me.  But my best stuff is locked into my head in bits and pieces and when I can get them in order I cannot type fast enough to keep up.  Frustrating.

 
I get side tracked to easily.  While typing this I remembered 5 other things I need to get done tomorrow so I got a head start.  Shouldn’t be a big deal but it takes me away from the task at hand, and  I added another paper to the list of things I want to write about.  I know the problem, as I write a word or phrase will set off another thought, and that thought is something I want to write later on, it takes me out of my groove having to stop and write down that thought.   I also think I want to post things I’ve written in the past so they can all be here, but not until I run out of other things to write about, if that’s possible  hehehehe.

 
I’ve turned into my mother somewhat.  Opinionated and cannot tolerate being treated like i’m an idiot.  Yes I have M.S. , it is incurable but that doesn’t make me stupid!    I cannot tolerate when a simple yes or no answer becomes a hour long speech having nothing to do with the questioned I asked.  Having an incurable disease does not mean I’m suddenly brainless!!

 
For the record I’m up to 27 papers  in my count.  I’m telling you I have some good things in my head and no head foreman to keep track of it all!  If my left side wasn’t so weak all the time I might be able to keep up LOL.  I’m sure before my next paper the count will go way up, it’s a good thing I like writing.  And that  last word there made me think of another one LOL.

 
Help?

 

Where to start? Six years ago I had incredible pain, thought it was a bad tooth so I went to my dentist. After x-rays we knew it was not a tooth, my dentist told me to go to my neurologist and tell him I needed medication for Trigeminal Neuralgia. WHAT ???

My neurologist had a P.A. who was nice enough but you could not ever hear a single word she said. She prescribed a drug to help me deal with the problem. The drug was normally used for epilepsy and my face was having seizures. Stupid P.A. had NO clue how to prescribe medications and started me out at to high a dose which cause me to not to be able to walk at all and the pain was still horrible.

Things got to the point where I went to the ER. My neurologist would not see me, his PA kept giving me the wrong info. I KNEW WHAT WAS WRONG! No one would listen, even those in the ER were skeptical and I just laid there in pain. One would think morphine would kill any pain……….WRONG! I was released from the ER, they didn’t know what to do and could not listen to me for advice (I’m only the patient), so home I went with a Rx for pain pills. Felt like I was in a time warp back to when I was diagnosed with MS…..finally after the same routine in the ER. Why is it one has to go 3 times before getting help? *sigh*

My third day in the ER the doctor working called my neurologist who SWORE he’d come see me in the ER after he was done with his patients in his office. LOL does one need to ask? The ER was full, I had to lay in a bed in the hallway, hospital was full and had no available beds. My father-in-law went to see his doctor and told him what I had been through for the past 3 days. An hour later I had a room.

Now my family doctor has to deal with me, and thankfully he knows to listen to me (he was the one who diagnosed the MS). As best as I, could, in-between shocks, I told him what was wrong. I have T.N. (Trigeminal Neuralgia), he had never heard of it which I fully understood. He left telling me he would spend the night studying T.N..YES, there is a God.

In the morning a very nice lady came to see me. She introduced herself and explained she was with Hospice. (BRAIN doing overtime, HUH?) Surely I wasn’t dying, was I? She told me she spent a long time talking with my doctor about my situation and he was at a complete loss as to how to stop my pain, could she help? No one knows pain better then those who work with hospice, they are the best.

We both agreed the epilepsy drug was the right course, I couldn’t handle what I was given and she wanted me to try a different drug, still for epilepsy. I said I’d do anything!! She said I needed to start the drug slowly (that is where the PA screwed up) and would take a few days to get the dosage correct. Finally someone who now fully understood what was going on. Should note that the hospice nurse also had to read up on T.N. to be sure to give me the proper drugs. She came and checked on me every day, she didn’t have to do it wasn’t in her job description, but like my family doctor they were both learning a lot from my case.

When my daughter came to visit me in the hospital she brought a registered letter, this came the day after I was admitted. The letter was from my neurologist stating he could no longer see me as a patient. Like I’d ever want to go see him again to begin with?

That was in May of 2005, and I was released after a week, knowing how to schedule my drug increases for when or if ever needed until the problem could be solved. It took several months, but I finally got an appointment with Dr. Benjamin Carson at Johns Hopkins that September, ten days later I would have a surgery to help stop the shocks. He is a wonderful caring person. His PA is a dream too. Now that I was in the system if I needed him again I could call her and get an appointment ASAP. And I did 05, 06, 07 and 08. Now 3 years later I may have to go back? NO! I’m doing everything I can to not let it get any worse. I’ve always babied it. Eat on the right side only, take gabapentin 3 times a day and one aspirin devolved by my left cheek nightly.

When I had my port put in this past November 2010 I was given a teylenol/oxy drug for pain after surgery. I never took more then 2 pills one the day of and one the next day, this thankfully left me several pills left over. They work wonderfully for my bad knee and when my knee gets really bad I’ll cut one into four, and just that one tiny quarter of a pill does wonders. Still I never took them on a regular basis. I have been taking that quarter of a tab daily for a couple of days now and it really really seems to be helping. Thinking I’ll contact Dr. Carson’s PA for a prescription so I won’t run out, but I’m not in a rush to contact her.

I’m also waiting until I get my MRI done May 5th so I’ll have a ton of information should she need to contact my local hospital for a copy of the MRI.. All of my doctors know how I am with drugs, I don’t like them so I never abuse them. So when I call asking for a particular drug they know I really need it. The epilepsy drug I still take 3 times a day although recently I increased one of the doses and hoping I don’t have to increase any more then that. Rest is the key and I know that but going to bed before 1:00AM is hard to do most days but I think it’s time to start trying for midnight…… starting on Monday.