In in for the long haul…

Today is the last day that I have health insurance.  So I am stocking up on the medications I currently have refills on and I followed up with the doc for the second opinion.

My bloodwork held no surprises.  ANA is still negative, so is all bloodwork looking for lupus.  Only a little bit of abnormalities in my complete blood count (lymphocytes) and with my c-reactive protein and a normal high of my sed rate.

This doc talked to my eye doc and I think to my current rheumatologist.  And I trust this doc, he is probably the best in this field in the area.

The verdict?  I definitely have an autoimmune disease that is attacking my eyes and is acting systemically throughout my body.  The methotrexate is working, (the doc said it saved my sight) as evidenced by my eye doctors peek in my eye and by the lab values.  I still have active disease in my left eye, so the second opinion doc is recommending anti-TNF therapy (I’ll get to that in a minute).  Despite the extensive lab work, no one can say whether it is definitely sarcoid or something else.  There is just no evidence either to rule it out or to solidify the diagnosis.  No one knows why I have increasing joint pain throughout my body.  It could be the disease itself, or the steroids that I have been on for six months weakening my bones.  The second opinion doc also said that I may have this going on for a very long time.  I may be on treatment for many years.  I may never come off of treatment.

His suggestion was to add anti-TNF therapy: Humira.  It is usually a rheumatoid arthritis drug.  It is extremely expensive.  I no longer have insurance after midnight tonight.  Funny, huh? Like $1,900/month expensive.  He also said that the programs that exist for people without insurance will most likely not pay for an “off label” use such as my condition, uveitis/presumed occular sarcoidosis.  Now is the time when I start cussing.  Fan-fucking-tastic.  I can’t afford food, let alone this type of medication.  He is suggesting the Humira to completely stop the inflammation in my eyes and completely stabilize me.

As for returning to a job?  No suggestions there.  He agreed and acknowledged my concerns regarding not just functioning as a hospice nurse, but a nurse in general.  I can’t make judgement calls about my own health, let alone someone else’s.  I can’t guarantee an employer (my current one or a prospective one) that I can be healthy for a set amount of time during any given week.

Let’s take yesterday, for example.  Thursdays are usually good days for me.  The side effects of the methotrexate are usually flushing out of my body.  I can usually tolerate housework, maybe a short run to the grocery store.  Yesterday around 2:30 pm I was hit with a wave of severe pain to all the joints from my left shoulder to my left fingers as well as my left hip.  I’m talking teeth gritting pain.  Being that my husband works second shift, I could not take any medications that would make me drowsy because of my responsibility to take care of Sunshine.  However, she was going to a birthday party for a neighbor (in the middle of the week? yes, I know, thank God for small favors) and she wasn’t due to return til early evening.  So I took a dose of tramadol, I did take a 2 hour nap, and the pain was knocked down from a 9/10 to a 3/10.  I was awake by the time Sunshine came home, and we had “Mama/baby time” where we snuggle in “Mama’s bed” and watch movies.

I was not anticipating that kind of pain.  I do not know where it came from.  I did nothing that could have triggered it.  No excessive typing, I didn’t sleep on it the wrong way, but I usually sleep on my left side.  I didn’t bang it off the wall, which I am prone to do.  Nada.  Just intense pain from my fingers through my shoulders and in my  hip.  Throbbing pain.  For hours.

I can’t promise my time to anyone.  I had to cancel dinner this week with my mom.  I can’t do that with an employer.

I wish I could read books and blog for a living.  Or a health coach.  I could do that.  Set my own schedule. Help people that need direction with health and wellness. Because I have been through this maze, on both sides, it can be scary. 

Positive:  I don’t have anything worse than what I already knew.  And that is stabilizing with the treatment I am currently receiving.

I am going to a baby shower tomorrow.  Nothing like celebrating new life.  I’ll post pics of the decorations I made.  Yes, that could have triggered the pain, but I am right handed, and my right side is fine.  I think the left side of my body just hates me 🙂

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3 thoughts on “In in for the long haul…

  1. You probably won’t get a full wage from it, but it’s possible to make a bit of money from blogging. Google has lots of info on how to make blogging pay. 🙂

    I’m sorry you’re in such a difficult situation with your insurance. I’m paying out of pocket for all my treatment too, it’s difficult, and I’m living in shared accommodation to pay for it. Hang in there x

  2. Pingback: Thank you Big Pharma!! « true life is stranger than fiction..

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