Saturday, August 27, 2011

Am I Missing Something?

Either I've missed something major in my research or my cognitive abilities have been more compromised than I thought.  If anyone reading this post could offer some insight I may have missed I would really appreciate it.

For the past year and a half I've learned more than I care to about antidepressants (SSRIs, SNRIs, Trycyclic, etc.) and other forms of medication from pain killers to anti-convulsants and sedatives.  I've been prescribed about ten different medications (so far) by several doctors as I've tried desperately to get some relief from my illness.  Right now I'm taking 200mg Welbutrin, 60mg Cymbalta, 100mg Neurontin and 2mg Lorazepam once daily.

Actually, antidepressants are far from new to me.   I've been taking them for about fifteen years.  I've suffered with depression for as long as I can remember with my earliest memory of being depressed taking place in my second grade classroom.  But it wasn't until 1995, while I was attending college, that I was finally diagnosed  with Major Depression and medicated.  Since then I've probably taken most of the antidepressants on the market.

About eight years ago I developed severe Panic Disorder and started taking Lorazepam for acute attacks.  After my panic became partially controlled I used Lorazepam on occasion to help me sleep.  A year and a half ago when I became ill with Fybromyalgia my sleep was severely disrupted as it is with many sufferers.  I couldn't stay asleep and I was plagued with disturbing dreams and horrible nightmares.  I started taking the Lorazepam again and it magically helped me sleep without any noticeable side effects.        

OK so, here's where the confusion starts. The last two doctors I've seen have insisted that I stop taking Lorazepam due to it's "addictive" nature.  I've been prescribed other medications that are meant to replace it, the latest and greatest of which is Neurontin.  I took the prescribed dosage for about six weeks and never experienced any reduction in the side effects which were SEVERE and included nausea, dizziness, migraine headaches, confusion and excessive tiredness.

I'm not understanding the logic here.  Although Lorazepam is supposedly addictive, I've been taking it on and off for eight years.  When I do take it, I'm able to get a good night's sleep, wake up feeling rested and without side-effects.  I've gone days and even weeks in the past without taking it and never experienced any type of withdrawal (which I have from other medications).  The fact that Lorazepam is addictive seems beside the point in this case.  It has worked well for me consistently and I haven't had any ill effects that I'm aware of.  The same cannot be said about the drugs that have been prescribed to replace it.  What am I missing?  Is there some type of stigma attached to the prescribing of Lorazepam (Ativan) in the medical community?  Is it some kind of taboo?  I 'm thoroughly baffled and can think of no other reason that my doctors would be so adamant that I not take it.  Any insight on this?

Tuesday, August 9, 2011

Mom to the Rescue

Tomorrow I will finally get the help I've needed for so long. After so much struggling and sickness I will be able to rest and hopefully begin to get well. Trying to manage this hotel at peak season, take care of my daughter and deal with my childish husband all the while feeling only partially alive has had me wondering more and more why I keep going. After becoming very concerned about my current state of mind and hearing my desperation through the phone, my mom booked tickets on a flight from Newark to LA that arrives tomorrow. My hope is that I will actually have some extended periods of time to rest and recuperate. I'm ecstatic that she's coming but at the same time, humbled that at age 38 I need my mom to fly across the country and rescue me.

My husband left about a half an hour ago after I told him his choices were the couch or his boat for the night. His immaturity and insensitivity have hurt me one too many times. Although I have asked him thousands of times to take over doing things I can't do anymore, he refuses to pick up the slack. My requests are always met with a roll of the eyes or sigh and often a sarcastic remark. I can't understand how he can be so insensitive to my suffering. It stuns me sometimes. He sees me pushing myself until I'm sick and just sits there watching (or not watching). When I ask him why he hasn't done something I've asked, he tells me he's been busy doing other things. I've decided that I'll stop trying to psychoanalyze his bizarre, hostile behavior and simply not tolerate it anymore. It's so important for me to have a strong support system. I've always hated to ask for help but realize that it's a necessity at this point in my life. I physically can't do the things I once could. I certainly don't need someone in my life making things more difficult for me both psychologically and physically .

Although this is the first time in my life I've had to deal with a debilitating physical illness, the experience of a failed relationship is far from new. If our marriage fails it will be divorced number two for both of us. This time though, there's a whole new dimension to be considered. We have a precious daughter. She loves her father so much and when I think of taking her away from him tears instinctively fill my eyes. One of the few positive things I can say about my husband is that he's a good father. 

I'm just beginning to realize why, for my whole life, I've been so adamant about not having children.  I'm not suggesting that I could have predicted being stricken with this terrible disease and I know that caring for my daughter would be considerably easier if I were well, but I still have this nagging feeling that I've made a big mistake. I desperately hope my little girl doesn't suffer because of my bad judgments. I know I made a mistake in marrying my husband but I've known that for some time. This is the first time there's an innocent bystander.

After a week with no response from my doctor I've decided to take matters into my own hands. I halved the dosage on three of my medications and seem to be experiencing fewer side effects. Unfortunately some Fibromyalgia symptoms are returning. I'm having more pain than I was last week, but not nearly to the degree it has been in the past.  I'll keep experimenting and hope that I can find a point where side effects and symptoms are at a tolerable balance.

Thursday, August 4, 2011

The Latest Boring Update

I'm finding myself in a very familiar situation but it's not de ja vu.  I've called and left two messages for my doctor, the first on Tuesday and haven't gotten a response yet.  I've cut back on my medication because I can't handle the side effects any more.  I've been feeling so nauseated and having such strong vertigo for the last two and a half weeks that I couldn't get out of bed a couple of days ago.  I've been feeling progressively worse not better.  I'm beginning to think that either the Cymbalta, the Nurontin or the combination of the two are not going to work for me.  This is particularly frustrating since I paid almost $300 for fifteen days worth of the Cymbalta and had to jump through a lot of paper work hoops to apply for the patient assistance program.  It looks as though all of my work may have been for nothing.  Work that was done while I was experiencing a great degree of discomfort and wanted only to be laying in my bed, in the dark.  I seem to be able to ward off the worst of the migraine headaches by staying really hydrated.  I realized that I was loosing a lot of fluids due to my excessive sweating.  I hope my doctor calls tomorrow with some encouragement but I'm fairly sure I'll be the one making the phone call.

Monday, August 1, 2011

Invisible Disease, Invisible Support System

I'm sure when my husband married me he had no idea what he was getting himself into.  To be fair I didn't either.  After the break-up of a long and loving relationship (which I've started to admit may have been a mistake) and numerous failures in the area of thirty-something dating, I met my husband.  I was newly sober after years of abusive drinking and he was living on a fishing boat.  I loved his carefree, boyish nature (red flag - I know, I know) and knowledge of boats and the sea of which I had something in common.  After a short but very passionate period of time we got married in Las Vegas.  After reaching the age of thirty-five, my life-long disinterest in having a child had started to waver.  What I was thinking when I decided to have a child with this man is any one's guess.  Neither of us had children from previous relationships so this would be a first for him also at the age of 41.  Somehow his passion and very persuasive nature got to me.  The first time I missed a birth control pill I became pregnant.  We were so excited that it had happened so fast since our ages were becoming a definite factor in our decision to become parents. 

The first indication of my husbands lack of nurturing ability started to show throughout my pregnancy.  I had looked forward to being pampered, spoiled and fussed over like I'd heard my friends husbands had.  The pampering never happened.  He was excited about the baby, but didn't seem to empathise at all with my discomfort or wish to diminish it at all.

A couple of months into my pregnancy I started to not feel right.  I wasn't throwing up or even nauseated most of the time, I just felt wrong.  As things progressed, I became weaker and weaker to the point that I couldn't stand long enough to take a shower.  I was short of breath and my muscles just didn't seem to work anymore.  I went to the doctor and she did some blood tests.  It turned out that I was slightly anemic but just fine besides.  It was just "a pregnancy thing" she said and explained that my body was undergoing severe changes.  This was hardly news to me.

After my daughter was born the weakness subsided slightly for a couple of months but then it came back to stay.  I felt like I had the flu.  My body ached and I was so tired and weak that it became very hard for me to even lift my new baby.  I won't re-hash all of the details about the ongoing discovery of my Fibromyalgia and all it's seeming unrelated symptoms since I've already done that in previous posts. 

My daughter is now seventeen months old.  I've had two brief remissions but have basically been sick since I became pregnant with her more than two years ago.  The lack of compassion my husband showed during my pregnancy has continued and become more pronounced throughout this entire ordeal.  I really have no idea what's going through his head but somehow I think he resents my becoming sick (although he would never consciously admit it) and feels like he got a bum deal in marrying me.  I've asked him so many times to help out more with things and take on more of the house hold responsibilities, but he reacts with a roll of the eyes, as though I'm nagging him.  Nagging.  That word is the biggest cop-out ever invented.  Somehow (usually) the women become the over-reacting slave drivers and men become helpless victims with the uttering of this word.  But that's a topic for another post.

If I had had any idea that I would become the victim of this terrible disease I may have thought twice before agreeing to marry my husband.  I may also have strongly considered and probably decided not to bring a child into my sickly world.  I love my daughter more than life itself and thoughts like these leave me with heavy feelings of guilt.  What the hell was I thinking?

I told my husband yesterday that it was over between us.  Our continuous fighting wears my already weak body and soul to nothing but a thread.  My husband has many issues of his own such as Post Traumatic Stress Disorder from Desert Storm and some cognitive problems of which I could never guess the source.  I've tried to be understanding to his struggles but his refusal to apologize for his actions (without being prompted)  and his defensive and often hostile reactions erase much of my empathy.  I keep thinking that I have to figure things out for our daughter's sake but at how high a cost?  My husband has already severely impeded my healing process and I have no reason to believe that anything will change.  What kind of a mother will I be if I'm unable to participate in much of my daughter's life?

I should have known better than to marry this "carefree, boyish" "man".  What the hell was I thinking??  I just hope anyone else who is afflicted with Fibromyalgia will really think about marrying anyone who may not be able to deal with the intensity of their illness.  Having a strong support system is SOOOO important.