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.

And fibro rears it’s ugly head…

Today is the first day…probably in months…that I felt like I had fibromyalgia.

I guess with everything else I have going on, the fibro slips into the background.  But today I felt it.

How do I know the difference?  Well, with pain associated with my autoimmune disorder, I usually feel it in specific joints. Especially my hands, wrists, elbows and feet.

With the fibro, its more muscle pain.  And its ALL OVER.  Head to toe.

And the fatigue.  It hasn’t been easy getting out of bed for the past two weeks (since I started Plaquenil), but today it was worse.

Just my general movement throughout the house is hampered.  Ick.

But the kids got fed (three whole times!!), they were properly attired, and they didn’t burn the house down.  That is an accomplishment.

Hoping for a better tomorrow!!

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.

Plaquenil

Finally started Plaquenil yesterday.

So far, so good.

Nausea and dizziness seems to be the worst of the side effects so far.

I’m glad to finally be on it because the joint pain was getting pretty severe.

I know the Plaquenil won’t give me any relief for awhile, but at least its a start.

My eyes seem to be a bit worse, however.

Anytime I cry (which unfortunately has been more frequent), my eyes feel swollen and “fog up” for hours afterward.  It looks like my glasses do when I step outside when the humidity is near 100%.  But on the inside.

I see the eye doc in three weeks.  Hopefully the Plaquenil will help enough to keep me from getting another injection IN MY EYE.

Financially, things are tolerable.  The threat of eviction has been nullified for at least two months.  It came close, though.  I am eternally grateful to both of our parents for keeping us afloat.

My main concern (other than the cost of moving) was for Sunshine.  She LOVES her school.  She is comfortable there, everyone knows her.  I honestly didn’t think she would do well with ANOTHER change, given the difficult year she just had.

I do what I have to do to help my daughter.

Positive thinking:  I have been spending a lot of time with my bonus son.  We are watching funny TV shows, superhero movies.  Definitely takes my mind off of things.

And the hits keep coming

Not a very happy 4th of July for me.

I didn’t think finances could get worse.  I was wrong.

I have yet to start the Plaquenil.  I have been six weeks without a dose of anything to kick down my overactive immune system, other than the steroids (and clearly, those are not enough).

I have been trying to conserve my eye drops, only doing them every couple of days because there are no generics available.  And they hurt.  Bad.

I got a scare this morning.

My husband wakes up at the crack of dawn to go to his primary job.  He only had the bathroom light on as he was getting ready.  There was a tiny bit of light coming through the windows.  He shuts off the bathroom light and suddenly a huge black spot appeared in my right eye.  And only my right eye.

I haven’t moved so fast in months.  I flew out of bed and into the bathroom to see if my eyes looked any different.  Nope, no visible changes.

So I tested it out again.

Yep, big black spot in the center of my vision when I shut out the light.  Fuck.

So I hastily put in my eye drops.  Endured the burn.  And finally the black spot went away.

So I’m scared.  Again.

I was crying yesterday (about financial issues) and when I was done, it looked like the insides of my eyes had fogged up.

I cleaned my glasses.  Nope.  Not dirty.

Apparently crying did something to inflame my eyes.  They are still a little foggy today.

It is really hard to be chronically ill.

Happy 4th of July.  Please consider checking out/sharing/donating at my gofundme page.

All donations are greatly appreciated.  All money goes directly to my medications, food, keeping a roof over my head.

Thank you.

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.

Take your medication EXACTLY as directed

The lovely hematoma from all the blood work and IVs.  I've had it worse before, but this one is solid underneath and painful.

The lovely hematoma from all the blood work and IVs. I’ve had it worse before, but this one is solid underneath and painful.

Good Lord, this week has sucked.

As a nurse, I deemed it prudent to completely take myself off my steroids.  If you have ever taken steroids, you know this is a bad idea.

In all fairness, I was down to 2mg (from a start of 60mg) and I honestly forgot to take them while on vacation for a variety of reasons.

I was a week or two out and I figured “hey, I’m not dead yet, maybe I can white knuckle some of these withdrawal symptoms and completely be steroid free!!”

I ended up in the emergency room.  Twice.

I woke up Tuesday with muscle spasms/contraction in all my limbs, but especially in my legs.  I could not control the frequent shaking and flailing.

I couldn’t talk.  I could stutter, I could stammer.  No coherent language.

And I was out of it.  I didn’t black out, but I was pretty much unresponsive at times.

Oh and my bp was all over the map, from 150s/110s to 92/palp.

And the sever pain in my lower back was horrendous.  Apparently this was my adrenal glands SCREAMING at me.

So the EMTs were called in on Tuesday to stabilize me and haul me to the hospital.

At the hospital, one I didn’t usually frequent and who wasn’t up to date on my condition, they missed that I was probably going through steroid withdrawal.  They gave me fluid, ativan, and sent me on my way.

I saw the rheumatologist the next day who put two and two together.  Apparently I should have had a cortisol level drawn and probably should have been kept for observation.  Shit.

She put me back on my steroids, wrote out a lengthy taper schedule (down by 0.5mg every two weeks).

I woke up yesterday with similar symptoms.  They weren’t as bad as Tuesday’s nightmare, but I could feel myself slipping.

So Mommy hauled me to the hospital (the one I frequent, to which my medical records are in their computer system), and I got fluid, steroids, and compazine.

I feel like a new person.

The muscle aches are there this morning, but so far I’m able to eat, able to move, able to talk and type.

The lessons learned?

Keep an ACCURATE list of medications and conditions on the fridge for these situations.  In the beginning I had done this religiously, but since I’ve been sick for over a year, I have slacked.

Have someone who knows your situation, knows how you have been recently, and who can advocate for you.  In this case, it was my mom and my husband.  I don’t know what I would have done without them.

And go to the hospital system that is most closely up to date with your condition.  In my area, there are three hospital systems.  I have been to two.

Finally, LISTEN TO YOUR DOCTOR.  Yes, I was permitted to taper my own dose of steroids, but I didn’t realize how poorly my body would react to the withdrawal of a substance I took for over a year.

So after $3,000+ in medical bills this week alone, I’m feeling better, physically.

And I have definitely learned my lesson.