The shingles came back. But I didn't catch them in time to stop them with a higher dose of anti-viral meds--because I couldn't breathe.
I still don't know why. Two episodes of severe shortness of breath that worsened with any activity (even brushing my teeth), each lasting about four days, and coming fairly soon after I'd taken my methotrexate injection for that week. And now it seems to be gone. I haven't gotten all of the test results yet--but the immediate results were that my lungs and heart looked fine. The first thought was that I had a pulmonary embolism, but that was quickly ruled out. Between the shingles and not being able to breathe, I was left so weak I could hardly walk around my house, hardly sit at my keyboard. I overdid it once or twice and set myself back. The fatigue and weakness from the shingles virus has been terrible.
I am now, finally, beginning to recover. I rode my exercise bike 10 minutes this morning and put a load of laundry in without being completely wiped out. I feel like I'm on my way back up!
A second-opinion rheumatologist visit, trying to find some other options to deal with my shingles vs. RA drugs difficulty gave me very little new information except to confirm that, in fact, I do have RA.
Due to the shingles and breathing problems, I am off RA meds except for plaquenil and 5 or 6 mgs of prednisone and celebrex. I'm going to see how long I can last on that. For those unfamiliar with RA, that could be helpful, or it could be like throwing a tablespoon of water on a bonfire. We'll see.
My gp has been wonderful. I am so grateful for a doctor who is available, who will listen and go to bat for me. In a system where this is increasingly rare, I realize what a blessing I have.
My husband has worried and folded laundry and taken time from work to listen to doctors tell me what they don't know, again.
And this. No matter how I feel, I cook for my family. But not this month. Not much. Both my kids got a bit of gluten from a restaurant where we picked up food one evening when I didn't cook. Both were affected, but my son is so much more sensitive--he missed three days of school. Friends swooped in and filled my freezer with meals--cooked in my house, with my recipes and my pots and pans to avoid the risk of any contamination.
One gracious friend drove me to appointments and waited when my husband couldn't.
In this month of Thanksgiving, I am grateful for many things. My sweet, sweet husband. My children--who just kept going when mom didn't. My family--those phone calls can make all the difference in the world! And I am grateful for my little Bible study group of women; the ones I've prayed with and relied on and couldn't do without.
From one of them, this reassurance, when I felt like it was all getting to be too much. (Hopefully she won't kill me for quoting her!)
(I) still see my sweet, active,
giving, energetic friend every time I look into your eyes past the fatigue and
pain - even on a good day.
I pray so often for a treatment plan
that will allow you to function and ease the exhaustion.
Hang in there - I will walk this
path alongside you, you can count on that.
Happy Thanksgiving
Hope you are blessed as I am
Sherry
I am so sorry for your recent pain!! But I am also thankful for that group of friends you have. Yes, what a blessing.
ReplyDeleteAlyssa
I am no doctor but could this breathing issue be an allergic reaction to the methotrexate? Here is a link to familiarize yourself with this type of reaction...http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001847/ I mention this because I have had bad reactions to some medications over the past 13 years with my ra. And no, doctors do not always listen until one is unfortunately in the er or worse. Hope you start to feel better. And by the way, pregnisone is the only medication I take for my ra besides a pain medication due to my severe medication reactions to the ra meds. I wish it weren't so but it is what it is.
ReplyDeleteDeb--Don't think it's an allergy, at least not exactly. But it may have something to do with the methotrexate. Or it may not. I've also been tested for a fungal infection and various other things. How do you get by on only pred and pain meds? That thought really frightens me as I seem to be working in that direction. Thanks so much for your suggestions--I'd love to visit with you more. It sounds like you have been through the proverbial wringer!
ReplyDeleteSherry
Wow, we have walked some similar paths lately. I hope you find relief soon. I'm so grateful my biologic is working. Methotrexate is nasty stuff, but sometimes a necessary evil. Then again, my "miracle" could give me cancer! ;)
ReplyDeleteSherry,
ReplyDeleteWow! You have been through a lot lately. As I read your post I can almost feel the love of your family oozing out. Does RA help us to appreciate the people in our lives even more? Do you find yourself more amazed all the time with the strength they have and the strength you have?
I am happy for the people in your life and appreciate that you are sharing here with us so that we can send you healing thoughts.