Struggling to stay positive

The methotrexate hit really hard this time around.

I can barely move.  Had a fever yesterday.  Mild nausea despite it being administered via injection.  I was able to sit up for a few hours last night and have dinner with my family, but went to bed soon after.

Right now I feel just plain awful.  

I’m up with my daughter who is so conditioned to wake up at 6 am due to school.

I feel as if I am weighed down by those lead aprons they put on you when getting an xray.  I feel like I’m wearing those over every square inch of my body.  I have pain in my fingers, wrists, elbows.  Every movement, other than typing, takes extreme effort.  Hell, the typing is taking extreme effort at this point.

I just want to go back to sleep and hopefully sleep this off.  But my husband has done everything this past weekend, and he deserves to sleep in.  Maybe another hour or so before I physically have to return to bed.

I hate this.  But the docs say this medication is what is preserving my sight.  But the side effects on the rest of my body are awful.  

Pain in hands and wrists getting worse..

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positive thinking = positive results

Good news from the docs this week.  The uveitis in my right eye is completely gone and is minimal in my left.  There are no signs of sarcoid in my brain.  No signs of sarcoid in my lungs.  They are still treating everything as though it is sarcoid, however.  I can decrease steroids by half again, but it was reiterated that it is the methotrexate that is keeping the inflammation and bleeding at bay and I may have to be on some sort of steroid/antimetabolite medication for years.

As much as this is good news, it also makes things complicated in that I don’t have the clear cut “this is what is wrong with you”.  I’m actually carrying the diagnosis “idiopathic uveitis, presumed occular sarcoidosis”.  Makes it complicated when trying to justify why I can’t work and when looking into other means of sustaining myself and my family.

I usually see life in shades of gray.  But this is one thing I wish was clear cut.  Either I have “xyz” disease or I don’t.  Either you have a cause for it or you don’t.  This is what is frustrating me.  And I have been the bearer of this news to patients before, the whole “the human body is a mystery, we don’t know why certain things happen, each person is an individual” speech.  I hate to be the recipient of such a speech.

So this week I felt better from the methotrexate by Wednesday.  Hopefully  next week it will be by Tuesday.  I will have some decisions to make regarding my occupation.  Although I no longer work in a hospital, my current job is still very demanding and stressful.  It requires a lot of long hours past 8-5 Monday through Friday.  I have some thinking to do.

Here is hoping that my weekly dose of poison is nice to me tonight!!

More positive thinking

As mentioned in other posts, I got married to my best friend of 15 years in June.

I still stare at him and wonder how I got so lucky.

I am truly head over heels in love with my husband.

His family wasn’t able to make it to the wedding.

His mom passed away suddenly almost a month after the wedding.

His dad attempted suicide a month after his mothers death.

My husband is an only child.

And his family is 1500 miles away.

To say it had been rough is a gross understatement.

Add my health issues…and I don’t know how he deals with it.

The positive? I’m not able to work due to the sarcoid.  I’m able to be home with him. I was here when he returned home after a month up north dealing with the aftermath of his moms passing and his dads issues.

I was able to give him my undivided attention, to listen, to be here and offer support.

What doesnt kill you makes you stronger…we have been married three months and by our six month anniversary we should be as strong as kevlar.

My sunshine

The other person in the pic is sometimes me, sometimes her bonus Dad, and sometimes her friend.

I’m a Mommy.

I made the conscious decision to become a Mommy during my initial brush with chronic illness when I was 24.  The docs didn’t know if what I had going on would last, if I could get pregnant, if rapidly dropping 30 lbs due to massive infection would affect my fertility or if fibromyalgia would hinder my chances of fertility in the future.

With my husband at the time, we made the conscious choice to go off birth control in order to have a child and also the side effects of birth control were becoming too much of a burden.  Hormonal birth control causes massive massive massive migraines for me.

I found out I was pregnant the day I was released from the care of my infectious disease specialist.

I had an uncomplicated pregnancy.  My migraines went away, my overall pain diminished, I actually felt better until late in the third trimester.  I did continue some medications for fibromyalgia and depression, namely zoloft and ambien.

I gave birth to a healthy daughter during a short and uncomplicated delivery.  No side effects of taking medication during my pregnancy were noted, other than she was extremely calm during the first few days.  And she has developed into a vibrant, curious, extremely intelligent little girl.

I knew going in that she wouldn’t have a “normal” childhood.  But who has a “normal” childhood? I knew that I had chronic issues, as did her father.  I adapted when she was an infant, with schedules, home routine, etc. My parents helped tremendously.  I don’t remember her first three months, but I hear they were fantastic.

As she grew, I just adapted along with her.  I found a job that wasn’t physically exhausting and with flexible hours.  As long as I could physically corral her, with baby gates and such, I was ok.  She has always been in the lower precentile for weight, despite a voracious appetite, so it has never really been a problem of carrying or lifting her.

I was just smart about it.  Always having a stroller so I didn’t have to carry her around.  Always keeping her busy if we went places, having snacks, toys etc.

When I split with her dad, my parents took on a greater role in helping to raise her.  We split when she was 2 1/2.  Since we live in the south, there is more of a chance to do more physical activities.  My dad takes her on bike rides, my mom swims with her.  All summer.  The kid is a fish.  My newly minted husband also is very physically active and takes her swimming, walking and to the playground.  Most of these things I can’t do.  Especially now.

Since I started taking methotrexate, I really can’t be in the sun.  I really have no tolerance for the heat period.  And my daughter knows and accepts it.

She really had no concept of the fibromyalgia because she was born into it, but she knows with this latest development.  And she is a typical kid about it.  She adapts.  She is flexible.  And I am so proud of her.

In a way, it has brought us closer.  I am forced to be at home all the time.  I don’t leave because I can’t drive very much.  I wake her up, I put her on the bus, I’m here when she gets home.

We have “girls night in” a lot where we cuddle on the couch and watch movies.  She understands that I can’t go out to the park or to swim or to ride bikes with her, she keeps that as the time with her grandparents or her bonus dad.

She is so smart.  I have explained to her what is going on with me in the most basic way possible, since she is very curious, and being in a family of nurses, we just can’t help it.  She doesn’t ask many questions, but when she does, I’m honest.

Her zest for life, her sense of humor, just her being her is what keeps me going through all of this.  I love being her Mommy.  I love watching her grow and learn and explore.  I love sharing my joy with my husband (who has a son, and all of this girl stuff is new to him) and with my parents who are reliving my childhood through her.

Would I like to be rid of the sarcoid/fibro/migraines so I can do all of the physical stuff with her?  Yes.  Would I like to have more money so I can take her to the museum/movies/shopping? Yes.  Would I like to have the weekends with her instead of in bed recovering from treatment? Yes.

But that’s not how it is.  I am fortunate enough to have people in my life that have stepped up and are willing and able to be there for her and to do those things. 

Sometimes when I start thinking about the situation I’m in…the inevitable circle of despair…I forget how fortunate I am.  I have an amazing family.  An amazing husband (which I didn’t have the first time around).  And a beautiful daughter who truly is the light of my life.

My sunshine.  She can always bring a smile to my face, no matter how much pain I’m in, no matter how exhausted I am.  She always makes me laugh and helps bring me in to the moment.  The pure joy of just being alive.

Another week, another shot of poison

I do methotrexate every Friday evening.

It is not as bad as last week.  I’m still “out of it” and dizzy and drowsy, but I’m not diaphoretic (sweaty) and my heart isn’t going overtime like last week.

I am having more pain this week.  Knees, elbows, hips, fingers.

I felt weaker in my knees yesterday, stronger today.

It’s like as soon as I take that shot, I can’t be counted on to do anything for the next few days.

Sleep is fragmented, movement is difficult and tenuous at best, fatigue increases 10 fold.

I would say its not worth it, but at the last eye doctors visit, I was improving.  I keep on saying that to myself:

This is working.  This is working.  This is worth it because it is working.

Maybe I should stop thinking of it as poison.  You know, the whole “mind-body” thing. Its kind of hard when there is labels all over the stuff saying “cytotoxin”.  And then knowingly injecting it into your body.

Sometimes having medical knowledge isn’t a good thing.

I am capable of reading all of the medical literature on my condition(s).  Much I have come across isn’t very positive.  There are a lot of vague and anecdotal information.  No hard facts.  Some lines that read “some patients spontaneously go into remission after a few years” or “a third of patients do not require treatment” and “steroids are sometimes all that is needed for a year”.

Well, so far I have obviously needed more than the first line treatment, and it doesn’t look like it is going away any time soon. I would love to wake up one morning and have energy and the spots in front of my eyes gone and to bounce out of bed.

No dice so far.

Maybe I’ll make a goal this week…thinking positive.

Mind numbing fatigue

I’ve had fibromyalgia for 7 years.  I thought I knew what fatigue was.

Hell, I have a child.  She is extremely energetic, bounce off the walls, tornado of a child.  I thought I knew what fatigue was.

Sarcoidosis has definitely shown me what fatigue truly is all about.

And I hate every single second of it.

I knew something was really starting to be wrong outside of fibro and general stress from work when I started “crashing” more often on the weekends.  During the initial fibro days, or even before the diagnosis, I remember just randomly falling asleep in the evenings, around 6:30 pm and waking up at 9 pm. I just could not stay awake.  These were pre-baby days and I could afford such a luxury.

Well, more recently this past spring, I started doing it again.  On the weekends.  Just crashing at 11 am and sleeping straight through til 3 or 4.  My husband figured I just needed the sleep because I was working so hard during the week.  He is so wonderful.

It continued during my time off throughout the summer.  I’d get these sleeping “waves”, in which I knew I was “going out”.  I didn’t take anything for sleep, but it felt like I did.

I’m experiencing a lot of that this week.  It has happened four times this week.

And when I’m not asleep, I can barely move.  It. Just.Takes.Too.Much.Effort.  My limbs hang down at my sides, they feel like lead.  To physically move positions, it is almost a herculean effort.

I’m having more pain too.  Finger joints, knees, hips.  Elbows.  That is new and different from the fibro.  And I’m not taking anything for it unless I absolutely have to.  So far this week I’ve taken tylenol once and tramadol once.

But this fatigue.  It is so hard to put into words, but I try to explain it to my husband and my parents.  “Its like you have the flu” or “think about your most exhausting day ever”.

Basically, sleep doesn’t do shit for me.  Its just something I do, but doesn’t benefit me in any way, shape or form.  I honestly can’t remember when I felt refreshed from sleep.

I attempt to keep some sort of circadian rhythm, waking up in the morning (my daughter’s school bus comes at the ungodly hour of 6:55 am) and going to “sleep” between 10 pm and 11 pm.  I try not to nap during the day, but like I said above, it just happens.

My body always feels tired, dragging.  If I “overdo it”, i.e. go to the grocery store, I feel like I’m running out of gas and its like my brain shuts off.  I literally do not know what I am doing.  My brain feels numb.  I literally have to force myself to put one foot in front of the other.

And tomorrow is poison day.

I know I have to have a better outlook.

Maybe I’ll wake up with one…

Catch 22

So I’m sick. I have a condition that really hasn’t been confirmed, but they are treating it as if I have it.

Sarcoidosis.

The steroids didn’t work. So I’m on methotrexate. That is a form of chemotherapy that they give to cancer patients, but for my purposes, its a lower dose. But the side effects still suck.

Because I’m on the chemo, I have to be on birth control. Which brings us to the subject of this post.

My husband and I are fairly certain that we can’t conceive without medical assistance…for various reasons. We were off birth control for two and a half years prior to me getting sick and no baby.

Birth control pills flare my migraines. Badly. Since starting a very low dose, I have had a migraine nearly every other day. I was already on a max dose of anti seizure medication prior to the sarcoid diagnosis. Recently added to the mix was another antidepressant to help with sleep and the migraines. And for the fibro, I had already been taking lyrica and another antidepressant.

So..having migraines every other day and taking my migraine relief medication is creating this polypharmacy stew in my body.

Oh..I forgot…add in the steroids and the methotrexate once a week.

This past weekend my heart started racing. And believe me, I was not participating in any aerobic activity.

My parents think its all the meds.

But what to eliminate? I would love to cut out the birth control. But if I do get pregnant…I live in Texas. A state that feels it necessary to regulate every uterus within it’s border.

Anti migraine meds? In the past, I had one full month of migraines when I was coming off of migraine meds. I do not wish to repeat.

Antidepressants? There is so much shit going on right now…I’ll have to post all the fantastic happenings that occurred this summer. We are waiting for the asteroid to crash through the front window any day now.

Lyrica? I have been on it for 5 years. It is the only thing that worked for my fibro symptoms. It is what turned my overall muscle pain down from an 8 to a 2.

And the new meds. Apparently my body hates me and is destroying itself from the inside out. And the only thing keeping me from going blind is steroids and poison.

See the dilemma?

Stop the meds and physically feel better…but go blind and then possibly relapse with fibro and depression…

Or

Keep taking all the meds…keep my sight..keep the fibro under control…but suffer with side effects..

I hate this.

***Update 9/20/12***

I decided to stop the birth control.  We are just going to use other methods.

The only issue so far is that my hormones are out of whack.  And on top of being on steroids, I am just a bundle of fun these days.  Which feeds into the “not getting pregnant” thing…

I should nominate my husband for sainthood.

Sunday Funday

I was born a Steelers fan.

I remember as a child every Sunday in the fall and winter, my mom watching Steeler games.  My dad was a Dallas fan until his conversion after the Steelers lost to the Cowboys in the Superbowl in 1995.

It sounds like a religion, doesn’t it?

Well, it is.

I lived in Pittsburgh for 25 years.  It is unlike any other city in the nation when it comes to sports.  Pittsburgh is somewhat isolated when it comes to sports.  There is no other big city close to it that competes for loyalty of the fans.  So if you are born there, grow up there, even live there for a period of time, you eventually succumb to the black and gold fever.

And since all the major sports teams have the same color scheme, black and gold, it makes it much easier and cheaper, to show Pittsburgh pride.  It is not uncommon to see a Steelers shirt worn to a hockey game.  And visa versa.

Year round, you will see people wearing black and gold.  Year round people will talk Steelers football.  Football is numero uno.  You can walk into any bar, anytime of year and talk football.  There could be a serial killer stalking children in the city, but if Troy Polomalu is injured, it will lead the news.

When Ben Rothlisberger crashed his motorcycle? Dear God it was insanity.  It warranted a break in regular news programming.  For hours.  I kid you not.

But the way the city comes together is wonderful.  During playoff time, if the Steelers are making a run, it is so wonderful to see all that black and gold, all the signs, the songs.  That is one thing I miss being here.

I get so excited when I see a Steelers logo on a car or someone wearing a Steelers jersey down here.  Its like a beacon calling me to the good memories of Pittsburgh.

There are other cities like Pittsburgh when it comes to sports.   My husband is an Eagles fan.  I truly did not entirely believe the stories he told me until we had a recent visit to his hometown.  The local sports talk radio station is on 24 hours.  There are people that call in 24 hours a day to talk sports.  We happened to be listening at 1 am coming home from a family function.  They were debating the Eagles last season.  It was mind numbing.  They can really fill 24 hours a day with sports talk?

And yes, all the stories are true.  The Vet, the batteries, booing Santa.  There was even a fan that brought a flare gun to a game and shot it on to the field during a Monday Night Football game.  Apparently the Eagles were stripped of MNF games for a period of  time after that.

And the famous 700 level.  My husband tells me wonderful stories about those fans.  Good Lord.  No wonder they needed a jail in the bowels of the stadium.  And my husband has had the chance to visit said jail when his former brother in law started a fight in the stands.

So now we live in Texas.  In Austin, the Longhorns dominate.  It is a sea of burnt orange.  The Dallas fans are here, but they aren’t as passionate as we Steelers and Eagles fans.  My husband knows more about the history of the Dallas Cowboys and their current roster than most Cowboys fans.

My dad has NFL Sunday Ticket, so like always, we gather on Sunday to watch our games.  If my husband’s game happens to be on during “our” game, he watches in another room.  The house echos with alternating cheers and jeers.

Fantasy football is another post for another day…

Chronic illness + marriage = ?

My first brush with profound illness occurred 10 months into my first experiment with marriage.  I was 23 years old when I got sick with a lovely intestinal bug that is common in hospitals.  At the time I was working night shift in the ICU.  I caught the new and improved strain that was more deadly and harder to treat.  I was hospitalized with extremely painful abdominal cramps, dehydration, and other symptoms that I do not want to mention.  I was sick for 9 months.  I couldn’t work because I was contagious.  I lost 30lbs.  I eventually lost my job.  The docs actually approached me about removing my intestines, I was that sick.

It was during one of my hospital stays that they diagnosed me with fibromyalgia.  At age 23.  Those symptoms of muscle pain, fatigue, fog, were just awful.

My former husband…well…he was less than supportive.  I remember being alone a lot.  He never went to any of my appointments with me.  I honestly don’t think he ever believed that fibromyalgia was a real illness.  I just couldn’t work, and as I made more money than him, it was a problem.

There were more problems with that marriage than just me being sick…but my illness certainly didn’t help matters.

Chronic illness can either strengthen or destroy a marriage.  In the case of my first marriage, it was the latter.  My ex husband actually told me, after we separated:  “I fell out of love with you when you got sick”.  Yet, he conceived a child with me and remained in a loveless marriage with me for 4 more years without mentioning his feelings.

Fast forward to the present.  My husband and I have been friends for 15 years.  I’ll probably post our love story soon.  He already knew of my struggles with my health since I was a teenager.  In fact, I was talking to him on the phone during many of my hospitalizations.

After I moved to Texas, many of my fibro symptoms were minimized.  I don’t know if it was the weather, the decrease in stress after leaving a bad marriage, or coming off of some of the medications I was on while in pgh, but overall I was doing much much much better.  I was even working full time, which was something I hadn’t done since initially getting sick with the intestinal bug 4 years prior.

My husband relocated to Texas 9 months after I moved here.  He became accustomed to my occasional fibro flares and migraines.  He became familiar with the medications I took.  A complete change to what I was used to.

And then I started feeling sicker more often.  Over a nine month period I had low grade fevers, more fatigue, more migraines, feeling like I had been hit by a truck.  I thought it was just me working too hard.  Until my eyes exploded.  See my page “All in the family”.

My husband, who was not yet my husband, was completely amazing.  He just jumped in there and became my rock.  Taking me to my appointments, holding me, holding my hair back while I puked, putting me to bed.  Taking care of me.  I realized “oh, this is what its all about”.  He asks the docs the tough questions.  He makes sure that I rest.

We got married two weeks after my eyes exploded.  The very same week that they came up with the sarcoidosis diagnosis.  He still married me knowing that I have not one, but two chronic diagnoses.  One which could be fatal if the sarcoid decides to attack my heart or lungs.  As much as we would like to have our own children together, after this latest diagnosis, we both know that a pregnancy for me might not be wise or even possible.

Yes, it gets stressful.  I can’t do things.  My limit right now is about 20 minutes of sustained activity.  I can’t pitch in with the household chores.  We are broke right now because I can’t work.  My parents are helping out with bills.  My medical bills are putting us into debt.  He has a plethora of issues in his own life that he is going through.  But overall he cares.  Overall he is doing his best.

I feel so fortunate to have him in my life.  I don’t feel so alone as I did with my first brush with illness.  I truly have a partner this time around.  And for that I am grateful.

My bad habit..

I guess it’s not a bad habit really.  But it can cost money.  And the way I go through these things..it can cost a lot of money.  I have always been a bookworm.  I started to read at age four and really haven’t let up since.  As a child I would read anything I could get my hands on.  I read way above my reading level, and I don’t think my parents noticed when I started reading Stephen King at the age of nine.  To this day I hate clowns.  And I have yet to see the movie, nor do I want to.

I go on reading tangents, where I’ll voraciously tear through an author or a subject, and then be done with it for awhile.  I usually don’t follow the best sellers lists, although I gave in and did the “Hunger Games” things this year and the “Fifty Shades of Grey” thing.  Don’t roll your eyes.  I didn’t know those books existed until I saw a ton of my friends on FB talking about it.

My thoughts on the “Hunger Games”:  I loved it.  Very well written.  I saw the movie too.  And I can’t wait for the rest of the movies.

My thoughts on “Fifty”:  Lacking in the writing category, but it accomplished it’s mission.  It’s a sweet story.  If the reader can handle the sexual topics presented.  There were times I had to flip past a few of the sections, but only because of my past.  And that’s another post for another day.  I don’t need to go down that rabbit hole.

Currently I have been reading on average a book a day.  I have a Kindle, which I think is God’s (or whoever’s) sign to us that s/he loves us, and I raid the free books on Amazon at least once a week.  As I haven’t been working, there is no money for me to actually pay for my books.  Even if they are 99 cents.  So I scour Amazon for free books.  And I really haven’t been disappointed.

I also do http://www.bookbloggers.net, in which authors put up their books for review.  Majorly good stuff.  I haven’t read a bad book yet.  In fact I have come across some amazing good authors through that site.

Some of my recent favorites:  “The Zombie Bible” series by Stant Litore, “There Goes the Galaxy” by Jenn Thoreson, and The Mercury series by Rob Kroese.

What I look for in a book is something that can completely take me away from my current setting and situation.  Paint the picture for me.  Put me with the character.  Teach me something.  With the Zombie Bible series, Litore literally paints the picture of the time and place.  His writing is incredible.  With “Galaxy”, you are actually in space, new languages, aliens, customs, I truly loved it.  And Mercury…just the humor aimed at religion.

Ahhh…reading….