Update on ME!

Well, I think it has been a long time since I updated anything about ME lately. And seeing that I can't sleep and blogging helps to ease my mind, I figured this early morning would be the perfect opportunity to jot down how I've been doing along with some recent updates.

I had an appointment with my Rheumatologist right before Thanksgiving. I was swollen again and sore so she upped my steroids over the holidays so that I would feel "good." And good for the most part is how I felt. I started tapering down again on my steroids starting in January and thought that the Enbrel injections may have been working, until I completely stopped the steroids in February and noticed a decrease in swelling but that the pain was back....not full force...but definitely noticeable enough to affect my everyday life.

I had another appointment in February and my doctor again increased my steroid dose and also did some more blood work that had to be sent to the Mayo Clinic. It took about a month to get the results but when they did come back they showed an elevated IL 6 cytokine. This was interesting information for my doctor and we had a lengthy conversation about what this meant. The long of the short of it is that this does give new information into what we need to treat. We have been using biological agents known as TNF blockers but really so far it has been trial and error to see what will "work." And so far, not much has helped other than the steroids.

So- you would think this is good news, right? Well it is, yes! I mean, we now know what we need to target and treat.....BUT the drug to treat this is an infusion medication.....and I'm scared! It's as simple as that!

The home page for this medication has a HUGE pop up that you have to scroll down and accept the terms before you can enter the site. And of course it isn't like..."this medication is fabulous and you will be immediately cured and your hair will be back to normal again, and you won't have any more pain or inflammation....and you definitely won't gain or lose any weight....and it's so good that there aren't any scary risks of increased infections that can/will occur including cancer or lymphoma.....and we promise that this medication won't cause DEATH."

IF that is what I read, I probably would have probably started the infusion therapy and said to myself, this sounds like the real deal.....BE GONE autoimmune disease, rid my body FOREVER!!

Unfortunately the list of scary potential side effects go on and on.....and it specifies per my husband, that you may experience an allergic reaction to this medication on the first or any subsequent infusion that may result in death.

Ummmm.....hello....it terrifies me to try something like this with the casual "may result in death" clause.

I mean, I get that all medications come with risk, and that obviously the pros definitely outweigh the cons, but I just am having a really hard time letting myself think it is okay to try/start this. I get all sappy thinking about not being there for my boys....and again I know I am in God's hands but still.....

SO I'm at a stand still at this exact moment. My doc is encouraged to try the infusion and feels we have nothing to lose, other than my life, pardon the pun! She finally feels that we know what we need to treat/block and that this is a good thing.....but at the end of the day this is not a CURE for me, it is strictly a new medication regimen to TREAT/DEAL with a disease that is not all that fun to deal with.

Moving on to good news, I met with my nephrologist last week and she said that I was doing so well on their end and that since my kidney involvement has seem to resolved that I will be free from their care for one year and will only have to do follow up blood work/urine samples at the lab in between my visits. And it was the only visit since my hospital stay that they said they felt that they didn't need to do a kidney biopsy to see what was going on......Well done body, thanks for resolving my kidney issues! Now I'm not afraid to pop some IB Profen when I feel sore....

That's my update in a nutshell. I've come to the realization that I can manage this disease/condition/disorder. I just can't do cartwheels or play golf or do much that involves my hands, wrists or arms for a long time period. And I'm okay with that. There are still a lot of ways for me to be actively involved in Owen and Wyatt's life and to maintain a normal appearance for those who don't know me well.....life goes on and I will get through this......

If you pray, please continue to pray for peace about what to do regarding this infusion therapy drug.....I could certainly use it as I've been kind of anxious lately about it.

Thanks and happy Saturday! This is the one of the few times that I wish Owen was up right now so I could have someone to talk to, but yet again the silence has been blissful this morning.......