A New Week, A New Med – RAD Update V

Kim had another appointment on Wednesday with her rheumatologist. All in all it went pretty much as we expected. Kim’s pain is roughly the same as it has been over the last few weeks. Meaning that she is taking prescription pain medication as needed throughout the day and wakes up almost every night at least once to take more pills to stop the pain from waking her. As unpleasant as it it is, this is not abnormal. Fact is this has been her life for a long time. She is still on the prednisone and will stay on that for the time being. Her rheumatologist felt there is no need to try and taper off at this point in time as her RAD flares so much when she does. Actually, it isn’t as much a flare is it is her RAD doing what it wants to do without the prednisone there to prevent it. The pain and the swelling in her hands are pretty much the same as well. Her left pinkie finger got swollen and painful for the first time ever the last time she tapered off the prednisone. That finger, as well as all of the others she has had problems with — on both hands — are painful, stiff, and swollen every morning and remain that way for several hours before they start to loosen up.

Due to her symptoms remaining basically the same, and because some of her lab results indicate that increasing her MTX dosage would not be a good thing for her, the rheumatologist has suggested that she starts on Humira. Humira is what is known as a biologic in the RAD community. It is an engineered drug that prevents or inhibits the immune system from sending the bad cells to attack Kim’s body. It is taken through injection which we can do at home once every two weeks. She will start the Humira once we get approval from our insurance. She will also continue to stay on the MTX while taking the Humira and hopefully the two combined will help to protect her joints and relieve her symptoms. That catches you up on her last appointment. It went pretty much exactly as we expected. Her doctor wants to see her again in a month and hopes that she will already have gotten two doses of the Humira in by that time.

Other than that Kim’s breathing has improved slightly with the inhaled steroids that she has been taking. Although she seems to have a little bit of a sinus infection that is moving to her chest which has compromised her breathing a little more. She has been extremely fatigued for the last week and half to two weeks. Anyone who knows Kim knows that she is the type of person that wakes in the morning with a list of things to do and doesn’t rest until that list is finished. Unfortunately her lists have gotten significantly smaller and there are many days where she only gets one or two things done. She simply hasn’t had the energy to function outside of work. We would appreciate your prayers for her specifically in this area.

Spring has come early to us this year and while we are enjoying the very warm weather and the blooming cherry trees and flowers, it did prompt a serious conversation between Kim and I. What to do with her summer hobby of gardening. We talked and she reluctantly agreed, though she didn’t put up much of a fight, that her vegetable garden is going to be cut in half. At least. She’s been able to get out a couple of days recently for a half an hour or an hour at a time and clean of the flower beds, but it isn’t easy for her. She has said a few times recently, “I’m sick of being sick. I just want to do what I used to do.” So we would covet your prayers for her in this respect as well. We know that many of you pray for us regularly. Thank you so very much. We can’t convey how much that means to us and how it helps.

I close with a quote and one of my favorite Psalms,

God is not going to answer prayers that would enable you to live more independently of Him – Darrin Patrick

Cast your burden on the LORD,
and he will sustain you;
he will never permit
the righteous to be moved.
(Psalm 55:22 ESV)

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4 Comments

Filed under God, RAD

4 responses to “A New Week, A New Med – RAD Update V

  1. I can but empathise with your wife’s feeling of “sick of being sick”. I’ve said it many times myself ans sometimes it’s just so overwhelming isn’t it?!
    Btw I absolutely LOVE this psalm 🙂

    God Bless 🙂

  2. Sorry I’m so behind on Kim’s progress, but thanks for posting. I’m so sorry to hear that RA is having serious repercussions on her daily activities 😦 I hope that the Humira kicks in and works with the MTX to give her some serious improvement. It can take a while, so be patient. I will says prayers for the both of you as you continue to fight through this! And I hope that Kim’s able to have a manageable garden space for some “nature therapy” without over doing it.

  3. Pingback: Good News, Bad News, and The Best News | Bringing Me Back Home

  4. Mary Stodola

    Dear Kim & Family (I don’t know if you are mentioning names),

    I had ABSOLUTELY no idea ANY of this was happening!!!! I am soooooo very sorry!! The last time we talked, you (Kim) said something about the doctors may think you have RAD-& then we got interupted & we said we’d call each other! I am so sorry! My heart goes out to you all! as a family!! (I rarely get on FB, but I saw a post today about the biopsy results-if you can really call it results. At 1st I thought you were just commenting on a blog-like you do sometimes until I saw Kim’s name. And I thought-“Kim, is this ‘MY’ Kim?”, so I kept reading. I’m just going backwards now & this is as far as I’ve gotten so far. Each post-I’ve wanted to comment (you know me-always wanting to say something:)-encouraging, though)-but I’ve tried to stay focused (which isn’t easy), to finish reading. I finally had to stop & say something ‘cuz my heart is sooooo overwhelmed!!)

    I’ve missed my time with you, Kim! I chalked it up to you being busy & me being busy-no blame, just sad-‘cuz I truely miss my time with you!! I can not believe you’ve had all this going on (all of you!)!! I knew you still somewhat sick & struggling with doctors not knowing & them just “thinking” it was fibro. Sounds like they are getting closer & maybe finding more help (like the Humria & keeping up the steriods-I can’t spell that med:) And then wanting to do a lung biopsy. HOW FRUSTRATING that they don’t know exactly what it is yet-I’m gonna have to reread that post. I told you a long time ago, you needed to quit that smoking:)-just kidding. Sometimes (most of the time), I joke at the wrong times-but I’m just trying to make you smile.

    I don’t know if this is the place to say all of this-I know you guys are somewhat private & I try to respect that (& only send txts-could you imagine how long this one would be:).

    I love you so much, Kim (& to the rest of you 4!!) You guys are always in my heart, even though it seems we rarely talk sometimes. I SOOOO wish there was something I could do!, somehow take your pain for a day (I’d be such a wimp)-give you some energy-DO something. I can pray a ton! I do pray a ton! I will pray a ton!!

    Thanks for the insight into Psa 23, Mr. Blogger. I don’t know if it’s on this post, or another one. (I kept trying to just keep reading, like I said before) That has always been my favorite Psalm-I loved the Sunday school teacher who taught it to me at such an early age! He talked about it many times. He made it come alive! He used to describe “goodness” & “mercy” like being 2 watchdogs that stick right by your side (“…surely, goodness & mercy shall follow me all the days of my life…”). Never thought of it before as “walking” thru the valley of the “shadow” of death-those are SUCH hard times!!

    I love you guys (I know I already said that:)-
    Mary

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