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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P: Pars planitis

 

Pars planitis is the term my eye doc uses to generally describe my eye condition because he really has no clue if its sarcoidosis or something else.  Here is an overview from parsplanitis.org:

Pars planitis is a form of uveitis, one of a diverse group of potentially blinding but treatable inflammatory eye disorders affecting the middle layer of the eye know as the uvea or uveal tract.  Pars planitis can occur in one or both eyes. It can affect children as well as adults.  In some instances, the disorder occurs as a complication of systemic illness. In other cases, the cause cannot be determined.  In either instance, pars planitis is a treatable condition and may require the use of systemicimmunosuppression medication and/or surgery to halt its progression. Untreated, 20% of patients with pars planitis will have significant vision loss, and some will become blind.

Yeah.  That shit is scary.

Even as a nurse, I never knew that autoimmune diseases could affect the eye.  Until I found out the hard way.

So it’s rare.  It’s difficult to treat, it most likely involves needles or surgery IN THE EYE and it might never be gone.

Great.

As of today, I have been off of steroids for 8 months.  I have been off of methotrexate for almost a year.  I haven’t had a MAJOR recurrence, but the floaters are still there.  It looks like an old movie reel.

My night vision has improved greatly to where I feel comfortable driving at night.

I still have difficult adjusting from bright light to low light and visa versa.  Small print gives me difficulty.  I very rarely wear contacts because the irritation they cause isn’t really worth the effort.

I found out later from my doc that he thought I was going to go completely blind.  He didn’t want to tell me at the time, but at my last few visits he shared that with me.  Mainly to highlight that I’m 90% better than when he first saw me.  I still don’t like hearing that he thought I would go blind.

I see him in a few weeks, and hopefully I get another good report.  I don’t know if I will ever be completely “out of the woods” but its nice not to expect a needle in the eye at every doctor’s appointment.

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….

L: Love

 

I have other plans for “M” so this post goes here.  And since marriage isn’t an equal right *yet*, it is unfair to put this post in that category.

Chronic illness wreaks havoc on one’s love life.  It played a pretty major role in the devastation of my first marriage.  I think I would have eventually figured things out, but my diagnosis definitely helped me see his true colors a lot sooner.  So in that case it was sort of a mixed blessing.

With my second marriage, my husband knew me in all stages.  Pre-illness #1, pre-illness #2 and he has loved me and stood by my side as a friend or lover through all of them.  I remember talking to him on the phone while hospitalized during illness #1 (while married to husband #1).  He was puzzled why my husband at the time wasn’t there talking to me. That should have given me all the answers I needed right then.  Not once during that hospitalization or subsequent ones did he EVER stay more than an hour or two in the hospital.  Including the birth of Sunshine and HER brush with illness when she was three months old.  Some people just don’t do well with those types of situations.  You find out who they are after a life altering diagnosis.

But this isn’t a “bash my ex” session, I have another blog for that.

Relationships are difficult by nature.  Just look at the divorce rate.  Add in the stress when one (or both) parties are sick and that divorce rate can skyrocket.  It happened to me.  I was told after we split “I fell out of love with you when you got sick”.  And that is a direct quote.

I am lucky that a friend who has been by my side FOREVER wanted to be more than a friend.  I was lucky that he accepted my illness that I had at the time and still wanted to marry me even AFTER I got yet another diagnosis.  I was diagnosed with the autoimmune in my eyes literally days before our wedding.

It isn’t always hearts and flowers.  Right now we live with my parents because I couldn’t work for 18 months.  My meds are expensive.  When I was on steroids my mood swings were legendary.  My migraines are horrific.  I gained a tremendous amount of weight on the steroids that I’m still trying to work off and for awhile I resembled Shrek.  Our first year of marriage mainly consisted of doctors visits, eye injections, chemo injections every weekend, nausea and weeping thanks to the dreaded steroids.  We didn’t even go out to dinner for our first anniversary because we couldn’t afford it.

So many times I was terrified he would say “I can’t deal with this bullshit.  I’m gone”.  I even told him right before our wedding that he didn’t have to go through with it. That he deserved to be with someone healthy, that he had a free pass and we could still be friends.  He still married me and he has stayed.  He has been everything I ever wanted in a partner.  He is (mostly) calm, very compassionate, very intelligent and inquisitive about what is going on, willing to help out with everything that I can’t do.  He understands my limitations.  He doesn’t expect too much from me.  He actually asks how I’m feeling, he knows what exhausts me.  He encourages me to rest ahead of activities that he knows drain me. I’m very lucky.

Is it perfect?  No.  Do we argue?  Yes.  Do we get sick of each other, of the situation, of everything? Yes.

What helps that he is a scientist.  He has a degree in chemistry.  It is in his nature to understand my conditions and to understand why I am taking what medication and when and what it is supposed to do, what its side effects are.  He even read up on my conditions when we were friends and when he had absolutely no intention of spending eternity with me. That was just because he wanted to understand me better as a friend!  He gently reminds me to take care of myself.  He knows I forget to do that because I’m a nurse, it is in my nature to take care of everyone else first.  I will forget my meds, forget to call in refills, forget doctor’s appointments.  So he makes sure I take care of myself.

He goes to most of my appointments with me.  He is my advocate.  I forget things that he might mention and he sees things that I may miss.  I may be an awesome nurse, but I am an awful patient.  My husband will likely mention something to the doc that I have forgotten and it usually makes a difference.  And it is so wonderful to have him there as a support.

And when we do get fed up (especially now living in such close quarters), we talk about it.  Usually over text.  Communication seriously is the key. I know it sounds cliche but if he knows I’m acting a certain way because I’m late on meds (again) or because I’m having more pain because I’m not sleeping, that helps him more than him thinking I’m mad at him for no reason.

And I know that for me personally, having someone that dedicated and committed to me and my well being is paramount to my health, emotionally and mentally.  And that in turn helps me physically.

Maybe all you need is love after all.

 

 

H: Help (!)

H

 

It is very difficult to ask for help.  Especially in the beginning.  I was 23.  But my body was so weakened by my infection that I basically had no choice.  And over the years, it has become an act of survival.  I have to ask for help on occasion.

The summer of 2012, August in particular, was extremely rough.  My newlywed husband was on the east coast dealing with the aftermath of his mother’s unexpected death and trying to figure out how to care for his disabled father.  I had just returned to Texas after the funeral, expecting to return to work, only to be told that my autoimmune disease had progressed and I would have to increase my steroids to 60mg daily and start methotrexate.

I was sick.  Like really fucking sick.  Like in bed 24/7 sick and puking.  And I had a five year old.  And a husband 1500 miles away.  I needed help.  My babysitter and her family swooped in.   My babysitter even had her little brothers do some of the “man chores” like take out the trash.  My neighbors even brought over food and watched my daughter when my babysitter couldn’t.  My mom did my laundry and cleaned my bathroom.

That kind of help was tremendous.  Sometimes they just did it without asking.  Sometimes when someone says “is there anything I can do?” take them up on it.  Seriously.  When you are sick, you can’t be superman (or wonder woman).  You need help.  So take advantage of it.  And then think of little ways to show your gratitude.

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.

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.

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…

I’ll take any good news I can get…

Appointment with rheumatologist today..

My liver numbers are good, my CBC is good, my SED rate is good. C-reactive protein still elevated, but that’s expected.  But not higher than usual.

The big news?

If my eyes look ok next week at the eye doctors, I can stay off of steroids and immunosuppressive therapy.

Hell, even if he needs to do a little pokey in the eye and inject more steroids, I am all for it.

How horrible is that?  I would rather have an injection INTO my eye than go back on those meds.

I have felt fantastic (most of the time) since stopping methotrexate back in May, and the steroids in August.  Outside of my occasional  screw ups with meds (i.e. taking myself off of them) I have been doing much better than a year ago.

I have been walking most days this week.  I was going to start running, but the doc said to absolutely stay away from running.  She said biking, swimming, walking are cool, but without knowing if my sarcoid will spread to my joints, she doesn’t want me doing anything high impact.

So I’ll take whatever good news I can get.  Hoping beyond hope that the little floaters and lights that have crept back into my vision are easily remedied with a needle to the eye.