U: Update

 

I went to the eye doctor’s two days ago.  And finally.  Some sustained good news.

Despite some scarring, my eyes are the best that they have been since diagnosis.

It is hard for me to believe that.  For nearly two years it was one calamity after another.  So it is hard to let my guard down.

But I am off steroids.  I am off methotrexate (for nearly a year now).  I will always have lingering side effects from those two drugs.  I will always have scarring in my eyes, I will always have vision problems.

Mainly I see “floaters”.  I also have difficulty transitioning from darkness to bright light.  It seriously takes me awhile to adjust.

I have nausea and stomach issues from the steroid and methotrexate combo.

But I have my vision mainly intact.  For that I am thankful.

So just hoping to get back on my feet.

Still living with my parents, hoping to be out of here in a few months.

Work exhausts me, but I’m managing.

It has been two long years with this autoimmune shit.  I know it isn’t over.  But it is nice to be able to take a breather.

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M: Medication

 

I hate the fact that I require chemicals ingested into my body on a daily basis to live a pain-free, comfortable life.  I have this fantasy (a goal, actually) that I can get off of the meds in 10 years.  That may or may not happen, but it is nice to think about.

I have been on some sort of medication every day to control either migraines, depression, fibro or autoimmune disease for nearly 20 years.  That’s a lot of medication.

My record for consecutive days without medication was 10 weeks when I was pregnant.  By the end I was so anxious, so wound up, couldn’t sleep, etc that they wanted me on something.

I hate being beholden to something like this.  The thought that my body would go completely haywire if I didn’t take my meds.  I have tried, unsuccessfully, plenty of times to wean off, but it is usually ends in disaster.

I’m not going to go into details on what I currently take or what I have taken, but I will say that Lyrica does work for me.  I have been on it for 6 years and after I got over the initial 6 weeks of adjustment hell, it is well worth it.  It was like I woke up one morning and the pain was turned down.  It is not like I don’t have fibro pain, I do, but I am able to function better with it.

I was on methotrexate for almost a year.  That was a horrific year.  I blogged about it plenty in this forum.  Yes, it was a low dose chemo.  But I am so damn drug sensitive that it completely depleted me.  I felt like the tin man.  I could feel it seeping into my cells.  It was awful, and I will do anything to stay off of that med and off of steroids.

I absolutely refuse to take the heavy hitting narcotics for my pain.  When I was first diagnosed with fibro in 2005, all I knew about it was the few patients I had in the ICU with it and their uncontrollable pain.  These poor ladies would come in and have med lists as long as my arm.  They would be in a flare and they were so drug tolerant that nothing would touch them.  I was terrified when I was diagnosed, and I decided that I would never look to opioid narcotics for daily pain relief.

I do have a script for tramadol that I use very, very sparingly.  Probably less than twice a week.  But I refuse to ask for a script for hydrocodone, percocet, etc.  I feel that those sorts of meds are best for acute pain, not chronic pain.

I have nothing against people who do use those meds, but I do feel that there are better ways to manage chronic pain, and that chronic pain is woefully treated in this country.  I do feel that chronic pain can be treated better if certain substances were taken off of the schedule I list.  I also feel that other non-pharmaceutical treatments can be used for pain, and I do use them myself.

Just because there is a pill for that, doesn’t mean we have to take it….

C: Corticosteroids

C

 

Corticosteroids:  IMHO are the fucking devil.  But according to MedlinePlus

You may have heard of anabolic steroids, which can have harmful effects. But there’s another type of steroid – sometimes called a corticosteroid – that treats a variety of problems. These steroids are similar to hormones that your adrenal glands make to fight stress associated with illnesses and injuries. They reduce inflammation and affect the immune system.

You may need to take corticosteroids to treat

  • Arthritis
  • Asthma
  • Autoimmune diseases such as lupus and multiple sclerosis
  • Skin conditions such as eczema and rashes
  • Some kinds of cancer

Steroids are strong medicines, and they can have side effects, including weakened bones and cataracts. Because of this, you usually take them for as short a time as possible.

That definition barely scratches the surface.  Most people who have autoimmune disease are put on steroids at some point.  The side effects are awful and the above definition doesn’t do them justice.  Think of the Hulk, if he was weakened from fatigue, doughy from weight gain, and probably cried all the time from the mood swings.  No SMASH, more EAT!!

hulk

 

I was on high dose steroids for over a year.  I even had steroids injected into both of my eyes.  It sucked.  I gained 60lbs, I now have cataracts in both eyes, my stomach lining is permanently irritated and I will forever have nasty reflux.  Not sure about my bone density.  I will do everything in my power to stay off of these meds.

They taste awful too.

Day 19

20 facts about yourself:

Groan!  Really?  Didn’t this just go around FB awhile ago?

Here goes..

1) I am a huge sports fan.  HUGE.  I love hockey and football in that order.  But I can be persuaded to watch basketball, especially during March Madness.  Forget about baseball.

2)  I am a PITTSBURGH sports fan.  The Steelers and the Penguins.  The Pirates have to get back into my good graces.  Making the playoffs was a start.

3) I have wanted to “do something” in the health industry since I was a child.  I practically grew up in the halls of Presbyterian Hospital in Pittsburgh (now the dreaded UPMC Presby) when I was a kid because my dad and mom are both nurses.

4) I met my best friend on the planet when I was 8.  We have been friends through EVERYTHING.  Boys, crazy family, marriage (and in my case, divorce), and now kids.  We live 1,500 miles apart, but we still keep in touch, frequently, and I know I can text/call/email her with anything at anytime and she will be there for me.  As I will be there for her.

5) I met my husband on AOL in a teen chat room in 1997.

6) I have a very eclectic taste in music.  I love the Los Lonely Boys, The Clarks, Pearl Jam, Eminem, Led Zepplin, The Who, Adele, Taylor Swift, and most “pop” music.

7) I rarely watch “mainstream” television.  I watch live sporting events and The Walking Dead.  And maybe a few documentaries on WWII or history.  I have never seen an episode of Duck Dynasty, Honey Boo Boo, Grey’s Anatomy or any show like that.

8) First day on my driver’s permit, I crashed my mom’s car.

9) I used to have my tongue and belly button pierced.  Like every girl my age in the late 90s.

10)  I originally wanted to have four kids.  Who knows…maybe there is still time for that..

11) I made all my flowers for my second wedding.  With beads.

12) If I had more money and time, I would scrapbook.

13) I couldn’t grow a plant if my life depended on it.  So I hope the apocalypse doesn’t happen soon.

14) I recently learned how to cook.  As in the last year.

15) I’m still friends with my ex boyfriend from high school.

16) I am EXTREMELY drug sensitive.  A half dose of most things is good enough for me.  I have found this out many, many times over the years…the hard way.

17)  I have a penchant for contracting rare or difficult to treat illnesses.  C.Diff in 2005, possible ocular sarcoidosis (they still have no idea) in 2012.  And I don’t react as expected to typical treatments.  Lucky me.

18)  The left side of my body hates me.  My usual fibro pain is typically in my left shoulder/neck, left hip and left knee.  Go figure.

19) I was in marching band.  As a flag girl.

20) I have kept a journal off an on since I was 8.

So there you have it.  I tried to throw in some health ones because I primarily blog about health issues.

Does it ever end?

Just got over the concussion, now I have a new crisis.

My initiation into chronic illness came 8 years ago.  I worked in the ICU as a registered nurse.  I’m not sure exactly how it happened, I was on antibiotics that have now been proven to cause these types of issues, but I contracted c.diff.

For those of you who don’t know (lucky you!) c.diff is a spore forming bacterium that is absolutely devastating to the GI tract.  Most people who contract it are ill, older or younger.  Around the time I got sick, they were finding that more and more “healthy” people were contracting it from seemingly innocuous means, i.e. after surgery or while taking routine antibiotics.  I was relatively healthy (no fibro yet) and 23.

They theorize that my strain was the more “virulent” type recently found in Canada and that was spreading its way across the U.S.

Symptoms are usually massive diarrhea, for me, over 24 times per day, along with horrific stomach pain.  They really don’t have effective treatments for it other than more antibiotics.  Some which are toxic.  They are still experimenting with a “stool transplant” (pleasant, I know) to infuse the infected gut with “healthy” bacteria.

I became violently ill and required hospitalization.  Twice.  I was losing massive amounts of fluid from the constant diarrhea, and the pain (the churning) in my gut was unbearable.  I came thisclose to requiring a colectomy and pooping into a bag for the rest of my life.

About four months into the c.diff infection, I was diagnosed with fibro.  The theory there being that the overwhelming infection triggered the fibro.

It was 9 months and down 40lbs (which I couldn’t afford to lose at the time) later when I was finally deemed infection free.

The day I received this news was the day I found out I was pregnant with Sunshine.

Unfortunately her biological father wasn’t as happy as I was at the news.  We were married for less than a year when I got sick.  And the toll of the medical costs, the loss of my income (since I couldn’t work) and the stress of my illness more than likely contributed to the demise of our marriage.

Given the overwhelming immune response that occurred, they (the docs) think my autoimmune issues might have been triggered at this time as well.  Which leads me to present day.

I haven’t relapsed since 2006, but I have had GI issues since that time.  I have been extremely cautious about any antibiotic use.  I also found that I have to be VERY VERY careful with NSAIDS (think ibuprofen, naproxen, etc).

After concussion #4 I was prescribed some heavy duty NSAIDS.  I developed bleeding in my stomach after that.  It was treated easily with Nexium, but from then on I have had to stay away from any type of pain reliever other than Tylenol or Tramadol.  Fun for someone with a chronic pain condition.

The long term steroids further damaged my GI tract. And with this last concussion, and the subsequent migraines it spawned, and the fact that I twisted my knee exercising, I dipped back into the ibuprofen.  My migraine meds have naproxen in them.  And now I’m completely screwed.

I’m having bleeding again, horrific gastric reflux, and severe pain right under my sternum.  I wake up with a sore throat every morning.  I’m changing my diet as to not increase the pain, but it really isn’t helping.  I’m eating Zantac twice a day.

The pain is about 6-7 in my stomach for most of the day. And its getting worse.

I have an appointment with a GI doc in January.  I’m hoping that my PCP can call in something like Nexium to quell this volcano in my stomach.

And did I mention that I’ll be on the East Coast for the week between Christmas and New Years?

I’m stressed, the family issue is tense, and Christmas is a week away.

I’m just hoping that I get some relief soon.

More questions than answers..

Saw the eye doc today.

Good news?  Inflammation is under control.

Bad news?  The other things he noticed (namely the inflammation of my lacrimnal duct in BOTH eyes) may strongly point to sarcoidosis as being the definitive diagnosis.  Or it could be a completely NEW diagnosis.  Oh and the cataract in my left eye (as a result of the steroid injections) is significant enough to warrant surgery.  Probably in the next year.  Oh and the meds he prescribed for the stabbing pain in my eyes caused by the lacrimnal duct inflammation is $150.

So, again, I am frustrated.  I still don’t have a definitive diagnosis.  He uses the terms “pars planitis” and “ocular sarcoidosis” interchangebly.  I have not had the definitive biopsy that would once and for all settle the sarcoid question.  I’m not keen on getting a biopsy of my eyeball, my doc isn’t keen on doing one either.

But if I can get better treatment by having an ironclad diagnosis, then I’m all for it.

I’m sick of “well, it could be this” or “it could be this other thing that we haven’t mentioned yet”.  I’m sick of the roller coaster.  I just want this to be over with, but I’m realistic that I will probably be dealing with this for the rest of my life.

I feel like hell.  Have been for the past three weeks.  It is hard to tease out what is fibro and what is worsening autoimmune.  I asked the doc and he said its probably fibro.

I just don’t want to go blind.  I know that is a possibility.  As a nurse, I am also aware that doc frequently miss things or think it is one thing and it turns out to be another.

So basically I’m confused.

I know that my vision is worse.  Especially in my left eye.  It is “foggy” on the inside.  I am constantly wiping off my glasses, thinking that they are smeared.  Most of the time the fog is IN my eye.  My night vision is worse that its been since this summer.  And the sun sensitivity is still problematic.  And I now have eye pain.  That is the lacrimnal duct inflammation. It feels like a knife through the top left part of my eye.  Pleasant.

My next appointment is after the holidays.  The doc is comfortable that nothing will need to be addressed before then.  He is also going to confer with my rheumatologist to see if she feels anything needs to be examined further at this time.

Sigh.

Welcome back to the land of the living

One thing I love about Austin is the plethora of street festivals.

Ever since I have lived here, I have tried to make it to at least one or two per year.

Last year, I made it to one, right before my diagnosis.  I was unable to do the things I wanted to do, i.e. the fall festivals and Halloween, because I was too sick.

So I was extremely excited to be well enough to go to the Pecan Street Festival this year.

I gathered Sunshine and some girlfriends (and one of their reluctant husbands) and we set out to have some fun.

Sunshine got to ride a pony and pet a baby zebra, Mama got some much needed girl time with her besties, and we all got to experience the wonderful eclectic mix of people that is Austin.

When I told my mom what my plans were, she was so excited.

She said “welcome back to the land of the living”.  And I am very happy to be here.

I have done more exercise, participated in more activities in the past two weeks than I have in the prior year.

Methotrexate, not working, and massive doses of steroids really do take their toll.

In addition to working, I have started hanging out with my girls again.  Which is much needed.  Before, I couldn’t tolerate getting out of bed, getting ready, and going somewhere.  Never mind that through the worst of the floaters and issues with cataracts, that I didn’t feel safe driving.  So that seriously curbed my social life.  But my friends were awesome, accommodating me when needed, one even cleaning my house when she came to babysit (she even cleaned my microwave!!).  So its wonderful to be able to return some of their hospitality.

Just hoping that this continues.  That I’m able to stay off the meds and continue getting healthy.

I am already thinking of fun costumes for Halloween…

Back to the drawingboard

Two weeks of hell with the Plaquenil.

Abdominal pain, nausea, diarrhea.

I endured because 1) I don’t have very many options left in terms of medication and 2) the drug monograph said that the side effects would lessen the longer I took it.

WRONG!

I finally called the doc last week.  She took me off the Plaquenil.  Four days later I’m still having issues.

She called back this week and said she wants me to try the name brand Plaquenil instead of the generic.

I’m wary.  I’m not sure how much different it will be and the cost….well…let’s just say that I cannot afford it.

I see the eye doc later this week, hopefully he has some good news.

The financial situation is still perilous.  Horribly so.

If you have a few bucks and you want to help, check out my “gofundme” page:  http://www.gofundme.com/3ciaqc

On the plus side, the inability to eat and constant GI symptoms have left me 10lbs lighter.

Addictions

One thing that those who have never been “sick” can’t understand is the dependence on medications.

I have been on antidepressants since I was 16.  I have been on them all at one point or another.  Right now, its Zoloft.  It has been working, keeping me on even keel for the past two years.

With all that has been happening, my lack of health insurance, and lack of funds, I have been without it for the last week.

Part of me wants to be that “strong” person that my family wants me to me.  I hate being beholden to medications.  I hate the fact that I’m not “STRONG ENOUGH” to overcome my depression issues and be med free.  Every, single time I have tried to come off antidepressants, it has ended badly.  Why did I think I could succeed this time?

With my grandfather’s death and subsequent fallout over this site and my gofundme site (oh yes, Mommy and Daddy started reading this blog.  They are not pleased) I again tried to be “STRONG” and “PULL MYSELF UP BY THE BOOTSTRAPS” and white knuckle it off of Zoloft.

Yes, I know better.  But part of me wants to just try.  And it always ends badly.

So, I’m still dealing with my grief (which I haven’t really had a good cry about).  I have had stomach issues since Monday.  Muscle issues since yesterday.  Sleep is elusive, regardless of how much Benedryl I ingest. I am an irritable, irritable monster right now.  And I hate it.  It’s clear that I NEED to get back on this medication.

My concerns:  1) I haven’t seen the prescribing doctor in nearly a year.  They might not refill. 2) My PCP is also owed money.  She might not refill this med at all because she isn’t the original prescriber and because I owe her money 3) There is a waiting list to get into the local health clinic.  I  do not qualify for free care from this county (but if I moved 10 miles away, to Travis county, it would be no problem).

So, I just put the call in.  Waiting for a response.

I also haven’t heard back from my rheumatologist concerning Cellcept v. Plaquenil.

I called that office and was told that my rheumatologist wants to consult with my eye doc before making treatment decisions, which is understandable.  But he hasn’t called back yet.  It has been over a week.  I think he might actually be out of the country.

So I have that office calling the eye office back.  Jesus.  Its like a full time job where you pay someone else instead of getting paid.

It’s just a bad day today.  Rent is looming over my head.  My parents aren’t back yet from Pgh, but my mom is keeping me updated on how bad my grandma is taking it.

She has Alzheimer’s, and apparently she was sitting next to the casket at the funeral home, trying to wake up my grandpa.  She has a broken heart.

This news has done wonderful things for my mental state.

I’m sorry for another negative rant, but its really hard right now.  Its one thing to be just tired.  But to have diarrhea, nausea, muscle pain, irritability on top of the usual pain and tiredness, its unbearable.

Please, please consider donating to my gofundme site.  I never thought it would come to this, but I basically have no choice.

http://www.gofundme.com/3ciaqc

Thank you for reading.

Who needs a kidney? Or a liver?

The severe pain shuddering throughout my left back and abdomen might be a kidney stone.

My liver enzymes are highly elevated.

And I’m going out of town next week.

Shit.

Ok.  I finally made it to the primary care doctor’s office last Friday.  She thinks the pain in my left mid/lower back could be a kidney stone, based on the pain location and the fact that I have microscopic blood in my urine.  She wanted to do a sonogram right then and there, but since I have NO INSURANCE, there is no way I can afford it.  At all.

She gave me muscle relaxers to see if it was fibro pain.  

It helped, somewhat, but the pain is still present, just not as sharp.

I’m currently waiting on her call back with the next step.

I have my liver enzymes check every few months due to the methotrexate.  Last month they were slightly elevated.  This month they are VERY elevated.

I’m not turning yellow or anything, but it is concerning.  The doc told me to hold the methotrexate this week and try to get in to see her ASAP.

Well, the next available appointment is June 19.  

Waiting on that call back to find out what I should do and if I should even travel next week.

Good news?  The pressures are down in both eyes.  Being compliant with painful eye drops definitely improves the situation.