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.

So Very Sick and Tired

I feel absolutely horrible today.  I know my husband is growing tired of my being sick all the time but I'm so hurt by his apparent apathy.  I realize it must be hard to live with someone who's unable to do things she used to be able to, or things most anyone else can do for that matter.  He just can't seem to get it through his head that it's my body and mind that are suffering.  I think he's more upset about my not being able to do house chores or take care of the baby more than he is about my suffering.   I'm  starting to think that if I can't find a way to manage this disease he'll get sick of having to do house chores and not having sex when ever he wants because I'm in too much pain or too weak, and leave.  I know he'd never want to be away from is daughter who he loves more than life itself so I can foresee a painful custody battle (that I can easily win) and my moving back east to be near my family who will actually help me and care for me.  Then he can go find some slut who will have sex when ever he wants (which is always).  Is the man I married really that shallow?  I find the thought crossing my mind more and more and it hurts when it does.  This disease is going to ruin my life on so many levels.  My doctor doesn't return my calls and my husband thinks I'm a hypochondriac or something.  I don't know what he really thinks because he won't talk to me.  He doesn't know how to talk to me or anyone for that matter.  How can I be so depressed when I have so many antidepressants coursing through my veins.  I can't stop crying. 

I'm supposed to have a doctor appointment Monday.  I feel like a broken record or more like a fool.  I sometimes think I'm the victim of a cruel lab experiment.  How long can we string her along before she completely looses her mind.  If that's the case, the experiment may soon be over.  Especially if it destroys my marriage.

So Much for Tijuana

I've visited what seems like millions of "Medical Tourism" websites and haven't had any success.  I emailed the facility in Tijuana and I got a reply which implied they could help me.  I started to feel encouraged but a bit apprehensive, after all Mexico isn't the safest place to travel these days.  I did a search for reviews of the place and I only found one which was terrible. I found some other agencies and emailed them for information but all of the replies read that they were very sorry they wouldn't be able to help me.  It seems that most of the medical tourism agencies only do business with facilities who specialize in major surgeries or cosmetic surgery.

I was supposed to have had a long overdue doctor's appointment yesterday.  I never did get a response from my doctor after leaving two messages and a note.  I called the day before my appointment and left yet another message.  I wanted to know if she had contacted the Rhumatologist as promised during my last appointment which was about a month ago.  If she hadn't, then there would be no point in my coming in and paying $77 for an office visit.  Someone from the clinic called yesterday morning to say that my doctor had not spoken to the Rhumatologist because he had been "out of town" but was due back that day.  She had planned to call him later in the day, so there was no point in my coming in until she had spoken to him.  I made a new appointment.  So I wait in weakness and pain for another week.

This has been a hard week.  I've been particularly weak and short of breath.  My shins and forearms have been very sore, actually every part of my body has been sore.  I'm feeling depressed and discouraged.  I don't know what to do.  Thank goodness I have my crochet, something I can do laying down, or I would probably go insane.

Sitting With Old Men and Pigeons

Today my husband took care of our daughter and gave me a "day off".  Of course it wasn't really a day off because I used the time to catch up on hotel and personal business.  I went outside at one point to check the mail (we don't have mail delivery here so we all have PO boxes).  It was a really windy day, actually a gale, but sunny and a pleasant temperature.  I would have loved to go for a walk but being that I'm too weak these days, I sat down on a bench near the ocean and watched people walk by.  There were a couple of old men sitting on benches nearby also.  I felt like I too was old.  A couple acquaintances stopped for a quick chat, but eventually continued on.  Finally I got up and started home although I had to stop once more from fatigue before getting there.  My legs just don't work well anymore.  The muscles just burn and begin to give out.

Next Stop... Tijuana

My husband's mother has been stabilized and discharged from the hospital.  She's staying with one of her sons until she's well enough to go home, so my husband has spent several days on the mainland with her.  My mother has been visiting and was able to help me care for my daughter as well as help with housework while my husband was gone.  I realized suddenly that if my husband were ever gone for an extended period of time, I wouldn't be able to care for our daughter alone in my current condition.  After my mom left yesterday I started seriously thinking about having to move closer to my family.  I thought with profound sadness that I may have to leave this island that I love so much and move back to NJ, a place I do not love, even though I was born and raised there. This notion filled my heart with such sadness that I cried.  I don't know how I would mentally survive such a move back to the Gotham City gloom that is New Jersey.

I have an appointment with my doctor next week.  If she gives me the same run-around, I'm moving on to plan B.  I've found a treatment center in Tijuana that specializes in fibromyalgia, chronic fatigue, etc.  I cannot afford treatment in the US anymore.  I had started researching treatment in other countries through the somewhat new field of  "Medical Tourism" when I discovered the treatment center in Mexico.  I've emailed them for more information.

I Can Hardly Lift My Baby Girl

My cousin, who I haven't seen in fifteen years, is visiting us for two days.  We've been doing a lot of catching up.  She's been telling us about her adventures hiking all over the world and mentioned wanting to do some hiking while she was here on the island.  I gave her a hiking map and sent her on her way.  She hiked the trails I used to hike regularly but haven't seen the summits of for over a year.  I said that I'd love to go with her but that I'm not able to since Fybromyalgia took over my life.  I don't know if she really understood but she acknowledged what I said and went on her way.  I went home to take a nap since I'd overexerted myself big time walking as far as I had.  I viewed her pictures of the Pacific Ocean from the other side of the island when she got back and I knew I may never see those views with my own eyes again.

My husband is back for a few days before he returns to the mainland to take care of things with his mom.  She's out of the hospital but not doing very well.  I suppose they're just trying to treat her symptoms and pain now.

I took my daughter to the doctor today for her one year check up.  My mom, who is visiting from NJ, came with me since I am unable to pick my daughter up and carry her for any length of time.  My mom carried her into the exam room and to the scale to have her weighed.  I felt like and unfit mother.  I can barely take care of my own child.  When I found out she'd only gained 1.75 pounds since her last check up three months ago my heart ached.  The doctor said she was still within average limits but I felt negligent anyway.  I'm beyond frustrated.  Will I ever be able to live again?

Pea Soup Thick Fog

I am so frustrated with never knowing where anything is or what day it is or what I'm supposed to be doing when I get somewhere.  Today I got my daughter all dressed up, I put makeup on and I dragged my husband out.  The local newspaper had called for all 2010 babies and parents to meet at a local restaurant to get our pictures taken and have a pizza lunch.  I'd entered the date and time into my Blackberry.  When we walked into the restaurant and saw that no one was there, I had a bad feeling.  I walked over to a waitress I knew and told her we were there for the newspaper picture.  "Oh, that was yesterday" she said.  I looked at my husband who was understandably annoyed.  The waitress told us to go down to the newspaper office and see if they could take the picture today.  The office was closed.  We walked home and I apologized for my screw-up.  The walk had left me physically drained and soaked with sweat.  When we got home I looked at my Blackberry and realized that I had marked tomorrow as the date for the lunch.  Not only had I shown up on the wrong day, but I hadn't even shown up on the date I had put in my calender.  I called the editor of the newspaper when we got home and left a message on his voicemail explaining the situation.  Then I broke down.

I cried hard for about a half hour.  This constant confusion was really starting to scare me.  My husband tried to console me, but I just laid on my bed and played a game on the computer.  About ten minutes later there was a knock on the door.  It was Hannah, our babysitter.  I had asked her if she could pull some weeds for me since the hotels gardens were getting so overgrown.  This only made me cry harder. 

Gardening has always been my zen time.  I love playing in the dirt and experimenting with new succulents I find in the wild.  In the past, gardening has helped get me through some tough times. A few days ago it was really warm so I decided to enjoy the weather out in the garden.  After about 10 minutes after weeding and pruning I was sweating profusely and lightheaded.  I went back inside and felt horrible for about the next hour or so.  Obviously I wasn't going to be able to take care of the grounds while I was experiencing a flare.  I wonder if  this flare will ever end?

No Bitching This Time...I Swear

I know my last post was pretty pathetic.  To be honest I felt pretty pathetic.  Still do. 

Anyway, I found out that laying in the sun is almost as therapeutic as a hot bath.  I don't have a bath tub so I've had to rely on hot showers to relieve muscle and joint pain, which really isn't the same.  Yesterday we went for a walk with our daughter in her stroller.  My husband had to pick up his paycheck and I didn't feel well enough to walk the distance.  Since it was a beautiful day I decided to sit down by the water with our daughter.  I laid down on a bench in the sun.  Almost immediately, the pain in my joints started to fade.   It had a similar effect as sitting in a hot bath. I almost fell asleep it was so calming.  I'm lucky that it's sunny most of the time here.  I think even laying on the floor or sitting in a chair at a window in direct sunlight may have a similar, if not as intense, an effect.  I just thought I'd pass that along to other Fibromyalgia sufferers out there.  I don't know about all of you but any small thing that can relieve the pain and discomfort even temporarily is a blessing.  I'll have to experiment to see if it has any lasting effects (I mean in the way of hours or even an hour).

Sick and Tired

I feel horrible today.  I almost feel as bad as I did at the start of this hellish journey.  I've been faithfully taking my meds.  I don't understand why I feel this way.  It even hurts to type.  I'm so discouraged.  We were supposed to take a walk for lunch at one of our favorite restaurants but I wasn't able to.  I felt short of breath and my legs just couldn't move very much.  I'm also having these weird heart flutters again.

Well, I guess that's enough bitching.  I went to an AA  meeting last night and it was really great!  One of my good friends who I hadn't seen in a long time was there too.  There was someone at the meeting who was celebrating 60 days of sobriety.  The topic of discussion was the second step.  I have often had a hard time with since I consider myself agnostic.  She shared her difficulty with finding or believing in a higher power, God.  I then shared the way in which I deal with the second step.  I hope she found it  helpful.

My daughter is desperately trying to grab my laptop and press all the buttons.  For some reason she has a lot of energy this evening.  I wish I had just some of that.

Another Fibro Day

OK - it's back.  About 5:00 today the aching started again. Then I felt the almost irresistible urge to close my eyes.  I laid down and closed my eyes but baby girl was making too much racket with her toys.  I drifted in and out of sleep for about a half hour.  I then, maybe foolishly, took my daughter on a stroll to visit her dad down at the pier.  Getting back up the stairs with her was excruciating.  My knees were killing me. 

I really need to learn that when I start feeling bad I have to rest.  I'm trying to get back in shape but it seems like the day after I exercise I feel weaker instead of stronger.  It's counter-intuitive to be sedentary when I'm trying to recover.  Exercise is supposed to be a good thing - to make you stronger and healthier - not weaker and sicker.

Tomorrow, I think I'll go to an AA meeting.  It's  basically the only social life I have.  How friggin' pathetic.  I'm stuck in this apartment with only the baby day after day.  I feel so trapped. The hotel is so quiet this time of year, the phone hardly ever rings.  I guess I should try to go to sleep since the baby is sleeping.  Maybe I'll feel better tomorrow if I get enough sleep.  I noticed that how much I sleep is directly related to how I feel.

Good Day

Today was great.  I got to leave the island without the baby and meet up with a couple of my friends. We did girl stuff like try on clothes and makeup at the mall.  I was so happy that I was actually feeling well enough to take the boat ride then walk all over the mall.  I did have to excuse myself a couple times to go sit on a bench or something when the fatigue set in, but all in all the Fibro didn't keep me from doing what I wanted today.  It was a real victory.

I always took my health and physical fitness for  granted - never again.  I guess that's one advantage to this illness.  A little humility never hurts anyone.  Getting knocked down a few pegs every once in a while can be just what we arrogant humans need.

 I'm so glad that this particular "flare" lasted only one day.  I'm hoping that I will be able to start exercising again so I can loose this 25 pound baby weight.  It was pretty depressing to go shopping and have nothing fit or look decent.  I used to be thin and in good shape.  I know I'll get there again but I have found that exercise has to be increased very slowly and carefully.  Too much exertion in one day leads to a flare.  It's a very delicate balance.

On an unrelated note, my husband and I made up yesterday.  He apologized and promised to try harder.  That's all I can ask for.

Bad Night

Not long after my last posting, chaos broke out in my household.  My husband and I were bickering as as usual, when the argument escalated to a whole new level.  I was crying of course (my normal reflexive posture).  Our conversation entered the terrifying realm of divorce.  We've both been so unhappy, since I got pregnant really.  I won't go into the boring details but the outcome was him leaving to spend the night on his boat.  Being 37 years old, and divorced once, I've had my share of relationships fail.  But this is the first time there was a vulnerable, precious child. A completely faultless victim. I cried all night thinking, "What have I done?!  I've brought this beautiful child  into the world and already I'm not sure if I can give her a stable, loving family as I had".  There were tears in my husbands eyes (which I have never seen) when he kissed our daughter goodnight and walked out the door.  He said "We have to work this out.  We can't do this to her".

I know the arguing is exacerbating my fibro.  I know that's why I started feeling bad.  I feel completely drained of energy and life.

To Continue From Where I Left Off...

So, my pregnancy was pretty normal until about the 4th month.  Then the overwhelming fatigue set in.  And it REALLY set in.  I barely had enough strength to stand in the shower.  Lifting my hands to wash my hair was excruciatingly difficult - as though I were lifting a ten pound weight or something.  I laid on the couch all day every day falling in and out of sleep.  It kept on this way until I finally decided to see my Dr.  Something was really wrong.  I had to take a cab to the clinic (normally an easy walk) because I was so weak.  My Dr. did all kinds of blood tests and of course everything came back within normal ranges.  My Dr. said "it must be a pregnancy thing".  She told me to make sure to take my vitamins and to get enough protein (I'm a vegetarian). 

Anyway, about 3 weeks after having my daughter, I started to feel the flu symptoms again although this time it was very different.  One evening my whole body began to ache much more severely than it had before.  I started to sweat and I felt sick.  I can't describe the symptoms exactly - just sick.  I felt like I had to lay down or I would pass out.  I felt as though I had a high fever but each time I took my temperature it was normal.  The episode went away after a couple days but returned 6 months later and has never left.

I went back to my Dr. and she did a battery of "exotic" (& expensive) blood tests.  My ANA came back positive so we started exploring the many auto-immune diseases that exist.  More blood tests.  This time my ANA came back negative so my Dr. decided I didn't have an auto-immune disease after all.  All the blood test results came back within normal ranges again.  I was so frustrated because I really wanted to know what was wrong with me.  She put me on high levels of steroids for a couple weeks, which seemed to help, but was not a long-term solution.  My Dr. called a Rheumatologist she knew (I couldn't afford the consult fee at any specialist).  He told her to double the anti-depressants I was already on for depression.  I am now taking 400mg Welbutrin, 200mg Zoloft, 5-10mg Cyclobenzaprine and 2mg Lorazepam every day.  I wasn't back to my normal energy levels by any means but it was really helping for a while (about a month).  Until yesterday I thought I was on the mend.  I guess not.

First Ever Blog Post!

Hello.  As you can see from the title, this is my first blog post so forgive me if I'm not savvy to all the "rules".

I'm "spilling my guts" here is because I want this blog to be as open and honest as possible.  My hope is that others will get some comfort from knowing that someone else out there is going through the same (or similar) thing.  I don't plan on sharing this with anyone close to me (family/friends).  I just want this to be between me and others suffering similarly in life (and everyone else who is interested).

Today I was feeling so bad that I had to vent my frustration somewhere.  It came to me that a blog would be a great way to share my experiences and for others to share theirs.  I was recently diagnosed with Fibromyalgia.  I don't know, but I think this must be one of the most frustrating diseases to have.  So little is known about it and the symptom lists are so long that it seems like anyone could have it.  I can see how it could be very confusing to someone who doesn't suffer with it.  It's confusing to me and I do suffer from it.

Sometime in my early 20s I started having strange episodes.  My body would start aching and I would feel chills alternating with sweats as though I had the flu.  The symptoms were mild however and mysteriously passed in less than a day.  I was always a bit curious as to what caused it but since it didn't really disrupt my life I basically ignored it. 

In June 2009 my husband and I were married.  We did the Vegas "thing".  We got hitched at the famous Little White Chapel.  It was a trip.  About two weeks later I found out that I was pregnant.  I'd never thought of myself as the motherly type, but I do have a lot of love to give and knew that somehow this would be enough.  My family was thrilled!  It would be the first grandchild in our whole family (we're not very prolific).