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.

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.

C: Corticosteroids

 

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!!

 

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 26

Share:  A difficult time in your life

I read this title and started laughing to myself.  This entire blog was created because of a difficult time in my life.  It’s getting better, slowly, but this is probably the most stressful it has been.

I’ll update instead:

I survived my trip to the east coast.  Yes, it was cold, but apparently we got out just in time to avoid the polar vortex (of doom). I got to see my bonus son and spent some time with him.  That was awesome.  His mom behaved, mostly.  I spent some lovely time with my husband’s family.  They are so warm and welcoming.  A bit different from my current situation with MY family.

But the traveling and the weather got to me. And I needed two days to recover when I got back to Texas.

Things with my mom were worse when we got back, however.  I won’t go into details.  Apparently I’m a horrible mother.

Health wise, my eyes have inflammation in them, but not to the level he wants to treat right now.  My cataract isn’t getting worse.  So good news.

But the reflux and bleeding in my stomach is pretty bad.  I am scheduled for a scope (both ends) next week.  Fun times.

My pain from fibro has increased.  I think its the stress.  My joints in my elbows, hands, hips and ankles are killing me. I am supposed to see the rheumatologist sometime this spring, if I can wait that long.  I’m going to have her run my ANA again.

And the job search has begun in earnest.  I’ve had two interviews so far.  I’m hoping to hear back from them soon.  It is difficult trying to find a job in my industry that can go along with my illness.  I’m honest about what I went through.  I don’t want there to be any surprises if I take a job and my eyes get worse.  I’m mainly looking for part-time, something that isn’t intense or requires a lot of travel or being on my feet.  Good luck finding that nursing position.  If we get a new car, which might be happening fairly soon, I can return to hospice part time.  Fingers crossed.

Sunshine is amazing.  She just got an awesome report card.  She’s selling Girl Scout cookies (anyone want some?) and she is such a good little businesswoman.  She was taking orders from her classmates.  I had to explain to her that their parents probably need to order the cookies, since the kids aren’t carrying cash around with them.

My husband is also amazing.  He’s working so much, but this is a team effort.  I’m essentially his secretary, I get things done while he’s in his work cycle.  Because he works 12 hour night shifts, I don’t see him that much for four days out of the week.  But its worth it.  He’s already gotten promoted twice.

And my mom is working a lot more.  Which means we are getting along.

Today, things are looking up.  I hope by the end of the weekend I’ll have even more good news.

Thank you for reading!!

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.

Flaring and a quick update

First order of business….the inflammation in my eyes is back.  Not horrible, not enough to require treatment.  But its back.

That was a little disheartening.  But we did have a conversation about future treatment, should I need it.

I have been off of steroids for nearly two months.  Off of chemo for almost five.  I do not plan on EVER going back on those meds.

Doc said if he needs to treat the new inflammation, he will do steroid injections into the eye.  Which is what I wanted to hear.

So that’s good news.

Fibromyalgia has been rearing its ugly head again.  I’m pretty sure it is weather related, as the temperature actually dipped into the 40s here.  That morning I woke up and couldn’t move.  At all.  Fuck.

It took me about 45 minutes to actually get out of bed and get moving.  I went to work.

But each day since it has been better.  Still needing some help in the morning with Sunshine, but overall much better.

I plan on resuming my workout tonight.  Hopefully I can move tomorrow.

Thank you for all the likes and follows and support.  I really appreciate it.  I know this journey isn’t over yet, but at least I’m in a better place than I was a year or even six months ago.

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.

Sunday Funday!!

My husband has been counting down to this day since the Superbowl.

Now living with my parents, it is even more fun.

We would come over here on Sundays anyway, but now I have my stuff here and the ability to crash if I need to.

I survived my first work week.  I’m only doing 5 hours per day, but that is enough to kick my ass.

Trying to figure out if the fatigue is fibro related or autoimmune related.

I can tell the difference between the types of pain…sharp pains in my joints is usually autoimmune related.  The all over body ache, primarily in my muscles, is fibro.

The fatigue I’m feeling right now is slightly overwhelming.  It is taking extreme effort to do anything today.  My arms feel weighted, I feel like I’m walking in jello.

Also, I had a migraine from hell last night.

I’ll just blame everything on coming off of steroids.

I do get labs done this week, and I see the docs next week.

I have noticed an increase in floaters, but I’m not panicking yet.  I’m determined to wait it out until my appointment in October.

Time to get dressed up in front of the TV.  GO STEELERS!!

Good news…and getting back on the horse..

Friday I saw my eye doc.  No inflammation for the first time in over a year.

Per that doc, I don’t have to get back on antiinflammatory meds unless I have other symptoms that need treated, like joint pain and fatigue.

So far, so good.

My vision still isn’t fantastic, and once I get health insurance again (if that miracle occurs), I need to see the kind of eye doctor that prescribes contacts and glasses.

But I did two things that I haven’t really done in almost a year. I drove a car and not just to the grocery store less than a mile away, and I worked.

I am not foolish enough to believe that I can jump right back in to full time work.  I signed up with an agency that does health screenings for corporations and I was able to do five hours of ht/wt/vitals etc without dying.

I had some iffy moment with dizziness, difficulty with memory, difficulty lifting things.  But I worked and didn’t require EMS response.

Today, I feel like ick.  I think its more of the fibro and a combo of emotional stress.

Yes, the money is still an issue.  Add in the fact that my family (read:  father) is still punishing me for looking for alternatives to asking him for money.  I think that emotional distress is causing more pain than my disease processes combined.

But, I’m happy I am able to do SOMETHING.  And if anyone is willing to pay for a private nurse to advise their health decisions, I’m always looking for that type of work.

Until then, I hope I get more work through this agency, and the goal is to be back to full time work in the next six months.  Providing that I don’t experience a relapse or any other fun health issues.  

Thank you for reading!!