Ahhhhh. . .Summer!

Dropping into my blog for a quick update. . .I've got plans for this place, but not the time right now to implement them. Some little changes coming up when time allows. Soon.

I have been counting blessings this spring and summer.

OKC Memorial Marathon

Husband and kids did the 5K--so proud of them all!

We gave honor to whom honor is due with an anniversary party for my parents. Thank you Mother and Daddy, for everything!

My two youngest painted houses at work camp and then went to church camp. My oldest worked and had an internship, writing BLOGS for a marketing department! I packed gluten-free food for everyone as they came and went and came and went.

My boys went wilderness trekking--my son's dream since I read him My Side of the Mountain in second grade. They summitted a 14,000 foot peak in Colorado, hiking 25 miles in and out! They were gone for just over a week.

The whole group!

And finally, we took a short family vacation to New Mexico. My college girl could barely get away, but we squeezed it in and were glad we did! These times together are getting more and more rare but I so treasure them.

Flowers outside the little house where we stayed! Gorgeous!

Medical update: For those of my rheumatoid friends--I've stopped taking Orencia and methotrexate. No more. So--no more shingles and no more breathing problems. There seems to be no permanent damage to my lungs, though I'm still occasionally short of breath. Though I miss the pain relief, it is lovely to be without the mtx side effects each week--the one day of nausea, fatigue, headache, etc. I would begin to feel sick as soon as I  drew the stuff into the syringe! 

AND. . .I'm actually feeling pretty well! Not perfect. Not pain free. But without the shingles and their viral counterpart, and by sticking carefully to my gluten-free, lots of veggies and fruits diet and getting plenty of rest, I feel pretty good! I'm decreasing my prednisone per the directions of the infectious disease specialist and trying to let my immune system rebound. I'm down to 5.5 mg and have lost a little weight.

And I am thankful, thankful, thankful for the prayers and grace that have brought me to this place this summer. I am aware that without them I would not be feeling so much better. This is the first summer in three years that I have really felt well enough to enjoy it!

Happenings at Home

I didn't want to leave that last post up too long! Thank you, everyone, for your sweet comments. On a more positive note--here are some highlights from our family life of late.  Counting my blessings is easy.


My husband had another birthday--and we surprised him with an at-home fiesta and some of his favorite foods. The kids helped cook and decorate and it was tons more laid back and fun than going out! (I first caught this guy with my homemade enchiladas, so I make them for him every year on his birthday.)

His mustache wasn't sticking any longer!

About that same time we hosted another Japanese student who was just here for about a week. It was her first trip to the United States, and we had such a great time getting to know her! We love you, Miyu!

At an OC basketball game with my girls.

For my son, basketball season ended--and baseball season began. He hasn't played baseball since sixth grade but decided to try it again this year. Their first game was just a few days ago. He's still a little rusty, but he hit an in-the-park-home-run! Of course I'm one proud Mom! 

A friend got this great picture! Look at the ball just leaving the bat!

No pic, but his twin sister, Miss Music, competed in District Solo competition on marimba this weekend. We won't know how she did until tomorrow. . .  But I know she did great!  


I'm really not one of those moms who believes every kid has to have a "thing," but I am glad my two youngest have found activities that they love. Every child is different. Their older sister tried lots of different things without narrowing it down--I think she loved people and socializing more than the activities themselves.


This weekend was Spring Sing at the University she attends (and where my husband works). I think this is one of the most fun and busiest weekends of the year for her and the other students. It's a variety show/competition between the social clubs on campus. It always leaves me smiling-singing-laughing!

Her club's show was about astronauts. She danced on the side
because her foot is still sore from breaking it in China!
Mom's prejudiced but I think she was the cutest Space Shuttle ever!

With the BF, whose club's show was about Mario Brothers.
They placed fourth overall!

The girls--tired and happy!

So you see, as usual, life is going on around here! Wishing you all many blessings--


Sherry


Be joyful in hope, patient in affliction, faithful in prayer.
Romans 12:12

Walking a Thin Line

When your doctors start apologizing to you, you know you're in trouble. It's not a good sign if you feel the urge to reassure your doctor as he or she leaves the exam room. The last couple of times I've seen my rheumatologist and his p.a., they've both apologized.  My gp has apologized. Until I had RA, I never realized how many patients there were who doctors don't know how help.

 And now I get to be one of them.

After repeated rounds of shingles over the past 20 months and a severe lung reaction to methotrexate in the fall (methotrexate lung or hypersensitivity pneumonitis), I'm walking a very thin line.

Every time I suppress my immune system, I come down with shingles--so no more Orencia or kenelog shots or higher doses of oral pred. Over Christmas, with an oral pred dose of around 15mg and overdoing it a bit, I managed to have a small outbreak.  My lungs are also still sensitive, so I still have days when I am short of breath, though that does seem to be improving. With both of these problems, there is no standard treatment. No one knows what to do next. And so that thin line.

Right now I am taking only hydroxychlorquinine, about 7mg prednisone, and celebrex for my RA. In other words, not much, but it's holding fairly well for now.

So it's the quiet life for me. Plently of rest. As little stress as I can manage (I have teenagers in the house, so that doesn't always work!) A really good diet (oooohhhhh--I want a some sugar so badly!) with as many fruits and veggies and good foods as I can stand in a day.

I'm trying to both avoid shingles and an RA flare.  My RA is somewhat active now, but I'm getting by with topical pain relievers (lidoderm patches, ketaprofen cream), prayer and some stronger pain relief when I need it. But even this is a double-edged sword, as stronger pain relievers have started giving me rebound headaches, and I have to limit them in order for them to be useful.

My family is letting me sleep in every morning rather than navigating the morning crazies--and I am grateful for those two awesome teenagers who are old enough and independent enough to get themselves off to school and do their own laundry (and who sweetly kiss me goodbye before they leave).

I am trying to embrace the quiet rather than let it wear me down. When my children were small, my middle sister said I had the loudest house she's ever heard (and she has four kids)! I love the hustle and bustle of my kids and their friends coming and going.

But right now I'm praying for healing in my immune system.  I'm accepting God's sweet presence here with me.  It's almost spring outside. I don't know what this one will bring--it has been a difficult year, and if my body does not cooperate, I could hear more apologies from my doctors. I see an infectious disease specialist next week, so I'll find out if there are new ideas there.

Just a couple of weeks ago this was in one of my devotional books--Jesus Calling, Enjoying Peace in His Presence, by Sarah Young. From February 15:

Thank Me for the conditions that are requiring you to be still. Do not spoil these quiet hours by wishing them away, waiting impatiently to be active again.  Some of the greatest works in My kingdom have been done from sick beds and prison cells. Instead of resenting the limitations of a weakend body, search for My way in the midst of these very circumstances. Limitations can be liberating when your strongest desire is living close to Me.

And so I am waiting quietly, mostly peacefully. Walking, painfully, that narrow line.  I know some of you are walking it with me. I am praying for you.

Sherry

Now on Facebook!

Just for ease of communication with my fellow RAers--I created a facebook page. Join me there if you'd like. It lets me keep a little anonymity on the www and communicate more freely with you all.

A final post about my darlin' girl's travels to come soon, I promise! She is home now, to my relief and joy.

I am still having difficulty breathing, and my rheumatologist thinks methotrexate is to blame. Bronchoscopy with lavage and biopsies last week to check the status of my lungs. I am hoping to get at least some of those test results tomorrow--and I am, quite naturally, nervous.

A higher dose of prednisone and relief, finally, from the shingles post-viral fatigue, and I am feeling unusually well after over two months of illness!  If you can take the shingles vaccine, please do. I am trying to put together a post on this topic soon.

Joy and peace to you.

And those are not the idle words of this harried season, but rather a prayer from someone who knows what it means to be both with them and without them. And definitely prefers the with.

The Lady in (more, again) Pred
Facebook: The Lady in Pred

Catching Up--A Bumpy Month of Thanksgiving

It's been a bumpy month or so.

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

Road weary. . .but still driving

The problem with chronic illnesses is that they are, well, chronic. Even when they are not so bad, they are still there. They just go on and on. Nagging or assaulting.

It has been five years this summer since I was diagnosed with rheumatoid arthritis, since those first clumps of hair fell out in my hands and my joints stiffened into burning fire-brands. I did not realize it then, but though the disease is physical, the fiercest battle is always one for my mind and my spirit.

Every day I choose to fight another day, to be positive, to be a wife and mother and  friend and sister and daughter. But daily I have to choose. Sometimes I think of cooking dinner as climbing a mountain--one step at a time. Up and up. I reach the summit by getting dinner on the table. Step and step and step.

I got my Orencia again last week--the iv medication that I take monthly. And I restarted my methotrexate (self-injected weekly), both after a 4-month break.  Also got a cortisone injection into my elbow. It bends now! No shingles--just some mild chills that seem to have faded now. Praying for the best, and that this shingles saga will at last come to an end.

 

The infusion nurses always match our bandages to our outfits--and give out cute band-aids. I might possibly have the best nurses around!

 
As much as I choose to fight, to be positive, to say "life goes on," I am weary right now, tired of the fight. And spirit tiredness can feel even worse than RA fatigue. I have to look up for the strength to renew myself, outside myself when the mountain climb becomes a trudge. 
 

I love the quote below, from "Searching for God Knows What"  by Donald Miller. He reminds us that we are like children of Chernobyl, living in the world after the Fall. For readers of faith, this explains our suffering. For us all, it is not a perfect world.

"I have to say that you and I are not supposed to be this way. As creatures in need of somebody outside ourselves to name us, as creatures incomplete outside the companionship of God, our souls are born distorted, I am convinced of it. . .that Moses was right. That his explanation was greater than Maslow's or Pavlov's. I believe without question that none of us are happy in the way we were supposed to be happy. . .I believe we are in the wreckage of a war, a kind of Hiroshima, a kind of Mount Saint Helens, with souls distorted like the children of Chernobyl. As terrible as it is to think about these things, as ugly as it is to face them, I have to see the world this way in order for it to make sense. I have to believe something happened, and we are walking around holding our wounds."

I think of this at times when I am too tired or too much seems wrong. Life can be beautiful. But it can also be crushingly difficult and harsh.

One day at a time.

The Lady in Pred

I did it. . .

I took the shingles vaccine.

Not a big deal for most people, but a big deal for me because it is a live virus. It is generally not given to people with suppressed immune systems. It can cause big problems--a bad case of shingles or chicken pox, even bad enough for hospitalization. And no guarantees of immunity.

In the weeks leading up to the vaccine, I vaccilated. I researched. I prayed. I talked to my p.a. and my rheumotologist, who did not make me feel any better and reminded me once again, in different ways, that I do not live in  a perfect world and sometimes there are just not good answers--at which point I wanted to cry and point out that I'd noticed that at some point in the last few years.

But I didn't. I decided that if I had to do it I was going to have as much grace and patience as I could muster. My husband, however, was a nervous wreck. He sweetly did the worrying for me, bless his heart.

It has mostly gone well. Not perfect, though, as this is not a perfect world--as my doctors love to tell me. The evening after the shot I started itching all over, my eyes, ears, scalp, arms, legs, everywhere! Some kind reaction, either to the virus or to something in the shot but there's no way of knowing. Nearly 3 weeks later, the itching is still coming and going--benedryl to the rescue.

For over a week after the shot I felt wonderful! Really, I felt better than I had in months--my RA seemed to go into hiding. Could my body have been forming antibodies to the shingles virus and leaving my joints alone? I got up from my chair and cooked and played and acted like a normal, though weak, person. It felt soooo good!

The virus hit slowly--the leaden legs and stomach upset, and then the zing of  nerves firing on my stomach. Oh yes. I did end up getting shingles. Fairly mildly, but with the same deadening exhaustion that always comes. I tried to push through and ended up missing a weekend trip with my sweet, patient husband. I slept for most of three days instead.

So we shall see. Am I immune to shingles now? I have my next Orencia infusion next week. The first I've had in 3 months. I am doing remarkebly well pain-wise to only be taking plaquenil and 5mg prednisone. I am tempted to just stay put, but fear I will regret it. I was in a terrible flare just a few months ago. I will restart my methotrexate about the same time.

Any thoughts out there? What would you do? Take the Orencia? I would really like some time without a bout of shingles or an RA flare to regain some strength. I am pudding right now and my house is a mess.  Either way, it's not a perfect world, right?

Continually--
The Lady in Pred

photo courtesy of m_bartosch / FreeDigitalPhotos.net

Vacation 2011—Family, Fun and Inner Peace

Summer again! And a huge sigh of relief from me. Sometimes the school year feels like a race to the finish line, and I am dropping things along the way.

With three teenagers, it always seems there’s a lot going on, a lot to juggle. And I don’t always have to energy I need for my juggling act. I am still struggling with shingles and feeling a huge weight of anxiety about taking a live virus vaccine with my immune system low, but this seems to be the best option to have some hope of conquering this beast.

So we set off for Gulf Shores as soon as school was out—bathing suits and sunscreen and hormones all packed into our little Honda! I hoped the roar of the ocean would drown out the roaring in my heart and let us all relax a little.

The beach and sun and waves did their work. We returned to Oklahoma sunburned and relaxed, if a bit road-weary.

But God has been doing His work in me as well, and I feel compelled to share it. Throughout this year, my little Bible study group has come back to Philippians 4:4-7 and other verses like it, rejoicing and finding peace in spite of suffering. We think God really means it--He means for us to rejoice, not matter what.

At times I feel overwhelmed, but eventually I remember this: I cannot change my circumstances, but I can confront and endure with peace and rejoicing. With grace and not bitterness.

Be full of joy in the Lord always. I will say it again, be full of joy. Let everyone see that you are gentle and kind. The Lord is near. Do not worry about anything, but pray and ask God for everything you need, always giving thanks. And God’s peace, which is so great we cannot understand it, will keep your hearts and minds in Christ Jesus. (New Century Version)

Giving thanks for my wonderful family and friends.
Joy and peace to you.

The Lady in Pred

Between a Rock and a Hard Place

The kenelog shot finally worked—after about 10 days. I am up and moving again. Still some pain and stiffness, but the intensity is greatly relieved. My jaw is especially better—it was the first thing I noticed! Hurray!   I even managed to plant some tomatoes and peppers this past weekend—I love my garden.



Ah, but there is a price for this relief.  A few months before I had my first big RA flare, I was working hard on a project at work. I came down with the flu, and then a light case of shingles. The rash was fairly light, but the virus itself laid me out for nearly a month. I was so fatigued that when my RA began, I at first thought it might be shingles again.

Fast forward—four years into my RA battle.  The shingles/chicken pox virus is one of those that always lays dormant in your body. So last spring after a particularly busy time, it reactivated again. The rash was light, but again, the virus itself made me feel horrible. Chills, fever and a terrible weakness. At first I didn’t realize I had shingles, but once diagnosed and started on antivirals it quickly began to get better. That time.

After that, each time I received my Orencia infusion, the shingles flared. Sometimes the rash would erupt and be full-blown, other times it would only cause tingling on my skin where the rash usually was. But always it made me ill. My gp calls it viremia, the feeling you get when you are coming down with a virus—chills, achiness, tiredness. Sometimes I would be so weak I could barely sit up—at one point last summer I spent nearly 3 weeks in bed—with shingles.

So before every Orencia infusion I began taking anti-viral drugs and continued them until the shingles went away. I even took a break from Orencia, and that seemed to finally let my immune system rest  and put the shingles back into hiding in November.  Until I got this kenelog shot. About a week after the shot, I noticed a little itching on my stomach, in the usual place. Then the chills began. And the awful weakness and tiredness that even prednisone can’t help.

More antivirals. And so even though my RA is better, I am still not feeling well. Less pain, but I still only want to sleep. The valacyclovir has kept the rash in check, and it’s only a little uncomfortable. I skipped my methotrexate shot for the week, trying to let my immune system get back on top of things.

I was already debating a change in biologics, and since I’ve reactivated the shingles once again, this may be the last straw. Would another biologic be less likely to keep it going? There’s very little research in this area, and I’ve been pretty much left on my own to find it. The only published research is on a few of the TNFs, which have been shown to cause an increase in shingles.

There do seem to be a few people, even without compromised immune systems, who have shingles over and over again. Doctors don’t seem to know what to do with them. I seem to be one of them.

In catching up on blogs this week, I came across a recent post at Gitzen Girl. I love her attitude. Love her blog, and she expressed what I was feeling exactly. I sat in tears.  

It’s from April 13 and titled “Really.”  Take a look—I needed to look at my situation from a different perspective. I am grateful, grateful that she helped me. 
http://gitzengirl.blogspot.com/2011/04/really.html