Sunday, September 4, 2011

Care Giver, Care Taker

I was just reading some of my older posts and noticing how much the theme of this blog has changed from being a very clinical and somewhat emotional discovery of my new disease, to a mechanism for which I try (in vain) to explore my marriage problems.  Of course, my husband and I probably wouldn't have as many problems if it weren't for this damned illness but it really has brought out  his "true colors" (if you'll excuse the cliche).  I've already written in length about having a strong support system or at least a single person you can rely on to take over the physical duties you can no longer do.  This is of course a huge commitment and in most cases, a bit much to ask of a friend.   But a parent, sibling or child should be willing and able to help you out (unless of course you've spent your life being a jerk, in which case I say "good luck!").  The obvious fit for the job of caretaker is of course your spouse.  Considering you both actually took a witnessed vow in which you said you would love each other in sickness and in health, it seems almost a contractual obligation. 

As you're reading this I can hear you thinking "What the hell is all this talk of contractual obligations?  Of course the "task" of care giver falls to your spouse if there is one and they are physically able.  Your spouse should want to take care of you.  After all, he or she loves you and would do anything possible to ease your suffering.  Right?"

I'm not suggesting by any means that caring for a sick spouse is easy.  It's extremely difficult, heart-wrenching and exhausting. Even the most saintly among us can slip under the immense burden.  I've now had the experience of being a caregiver and now one in need of a care-giver.  I was the only one to care for my ex-fiance several years ago who suffered from mental illness (OCD) as well as a severe bout of Lyme disease which rendered him hospitalized and very sick for the better part of a year.  His mental illness was the element that broke our relationship (at least that's what I believe).  Reading my journals from that time, I can practically feel my desperation pouring from the pages.  I spoke to his doctor on his behalf because his illness was so acute at one point (and his doctor had a really crappy bedside manner) that they had a hard time communicating.  I counted the days till his therapy sessions and doctor appointments, hoping that from one of them he would come home "fixed".  I guess I cracked before he did and ran screaming into the night, away as fast as I could, from our otherwise loving eight year relationship.  After about four years after we amiably parted ways, he got married.  I hope his new wife is stronger than I was. 

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.

Wednesday, July 27, 2011

Peaches & Cream & Funky Carpet

My doctor has prescribed some new medication.  She took me off Zoloft and Flexoril and replaced them with Cymbalta and Nurontin.  Both of these new medications have some seriously inconvenient side effects .  I've been on them for about two weeks now and I'm still feeling nauseated, dizzy, super fatigued, weak and sweating like a pig.  In the past couple of days I've also been getting horrible headaches along with everything else.  I feel horrible.  I'm trying to run the hotel while taking care of my seventeen month old daughter at the same time and it's really sucking the life out of me.  This is our high season here and the phones are ringing off the hook.  The moment I pick up the phone my daughter screams on the top of her lungs which makes for a great impression to potential guests. 

It certainly doesn't help matters that I've found my husband is pretty much unable to deal with my illness.  Somehow, he feels sorry for himself and thinks he's getting the short end of the stick.  I have to keep reminding him that I'm the one who's sick and that it really sucks for me too (to put it very mildly).  Today I had a mini-meltdown (if there is such a thing).  My husband had apparently dumped water on the carpet (again) and neglected  to sop it up thoroughly.  Since it's been really warm the past few days, the spill, of which I was unaware of until today, had started to ferment making the carpet smell somewhat like cat piss.  This is not the first time this has happened and  I thought we had learned last time that when you spill something on the carpet and don't clean it up (especially in the summer) it quickly takes on a life of it's own...literally .  This smell does wonders for my nausea.  Well, this afternoon as I was discovering the source of the horrible smell, my daughter walked over to where I was sitting on the carpet and proceeded to slowly pour her peaches along with the syrup from her fruit cup on to the floor next to the existing funk.  I pretty much lost it at that point.  I just layed down on the floor and cried.  My daughter was very confused and a bit distressed I think because she kept trying to lift my head with her little hand.  My husband had been trying to take a nap because he had to get up at five am to take out a fishing charter.  I walked in the bedroom and told him I was sorry, but he was going to have to forgo the nap for today.

Sunday, July 17, 2011

I'm Actually Still Here

I've been so busy recently that I haven't had time to write.  This is due in part to my recent remission from Fybromyalgia or what ever the hell it is that I have.  I started feeling so good that I was able to do things I hadn't been able to do in a long time.  I resumed my exercises and was able to really put myself into marketing the hotel for the beginning of our high season.  My efforts seem to be working so far.  I've been taking many bookings and I already have several weekends during the summer sold out.  Considering I'm paid only commission on what I sell, this is looking better and better.

I finally went to see a real Rhumatologist.  She ordered bloodwork and my ANA came back positive again.  So, she ordered more bloodwork to try to get some more details.  I got the results today.  My ANA was positive again, 1:80 with a speckled pattern.  Everything else she tested for came back negative.  She was supposed to call today but her nurse said she was seeing patients back-to-back all day.  Oh, I'm so used to this.  I would be shocked if a doctor actually called me back when they said they would.  Anyway, I've had some episodes of not feeling very well (like after my cousins from Sweden left after visiting), but I've been feeling pretty darn good. Still not back to the way I felt before I got pregnant more than two years ago, but I should be thankful for what I have now.  After all, I can walk and carry my daughter (short distances).

One of the symptoms I had been suffering with was shortness of breath.  I have to share something that has really helped me with this.  A couple of years ago I got a pair of Earth brand shoes.  I hadn't worn them in a while but dug them out of the closet a month or so ago and have been wearing them regularly.  If you're not familiar with Earth shoes I'll try to briefly explain them.  The company makes footwear using eco-friendly materials, ethically responsible methods and they're actually made in the USA.   Being the tree-hugger that I am, I was instantly attracted to the company and decided to try a pair.  The really unique thing about them is that they use a "negative heel" technology of their own invention which puts your heel 3.7 degrees LOWER than the front of your foot.  The advertisements claimed that the negative heel actually put your spine into proper alignment, easing back strain, poor posture and opening the chest up for less labored breathing.  All of these claims seemed too good to be true but happily they're not.  I'm just a hair under six feet tall so I've always had a bit of a slumping posture.  When your sholders are slumped forward it really does impact your lung capacity.  Once I started wearing these shoes again I noticed I wasn't nearly as short of breath.  The company also claims that since you're essentially walking "up hill" all the time, you burn more calories than walking with a shoe where the heel is higher like all other shoes are.  This part I can't speak to but I really recommend them for improved posture.