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!!  

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.


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:

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


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.