Monday, February 20, 2012

The results are worth the pain.

My nephew and his wife are expecting the first baby in the next generation of our family. I found out in September, was sworn to secrecy until they announced it 2 months later. It was a good thing I started crocheting an afghan for the baby in September. It took me until 2 weeks ago to finish it, something I would be able to have once completed in 2 weeks. The aching fingers, hands, wrists,elbow and shoulders were all worth it when I saw the smile on my niece's face as she unwrapped it. It truly was a labor of love. I guess I will rest my joints a bit, then maybe start one for my as yet unconcieved grandchild. It may take more than 6 months!

Sunday, March 20, 2011

Another round of unknown...

This weekend questions have been rolling thru my brain like the spring breeze thru the trees.
My RA has been slowly but steadily deteriorating the past year or so. I have been on, and "failed" all the current biologics. My personal life was hectic, and stressful, with family issues and rumors of the hospital unit i work on being shut down. I have taken care of babies in the hospital nursery for 25 years. Dealing with babies that weigh less than 10 pounds was perfect for my RA developed I knew I could no longer handle caring for adults, with all the heavy lifting and physical demands. The last 2 years in the nursery became more difficult; opening baby bottles necessitated the use of a silicone grip pad, it was more difficult to grasp tiny IV needles and hold baby hands still, and then the worst blow of all....the switch to total computer charting. My handwriting has never been the best, but now we were finding out we had to write notes to ourselves to computer chart as we had time. Management wanted us to walk around with a notebook computer from room to room doing real-time charting, besides being a pain in the butt, it was physically impossible for me to hold the notebook and type with one hand, without a mouse. My legs, back shoulders and wrists protested loudly. I was able to get the OK to use notes and chart later, my only accommodation I had asked for. It still made my fingers and wrists hurt for hours after my shift was done.
The stress of not knowing if I had a job after the new year played havoc with my RA. I seemed to be in a constant flare. Our once happy unit was now tense, mistrust between management and staff escalated. Finally, in mid-January the announcement was made, our unit would be closing Jan. 31st. Most of us had been led to believe that our staff would be absorbed in to the staff of our huge sister hospital downtown, but the next week we were shocked to find out that all the nursery and labor and delivery staff from secretaries to RN's with 32 years employment in the corporation were all given a severance package based on length of employment. During that period we were to find another job in the system or find a job elsewhere/apply for unemployment. Suddenly the thought of no benefits/insurance and having to pay to Cobra insurance (at $844 a month for health insurance).
Fate took a turn that following weekend. I got sick with a respiratory and urinary infection. I was in no shape to job hunt.(Probably not good for a nurse to job hunt while ill) After 2 visits to the doctor and antibiotics I was still coughing, unable to take my Enbrel and Methotrexate, so my joints were flaring horribly. I was placed on short term disability days before my "paid time" was up.(So i basically am still a paid employee and get my partial salary and paid benefits)
A chest X-ray revealed that my lungs had some minor atelectasis (lungs not filling completely) I was short of breath, my heart rate was elevated and everything I did made me long for a 4 hour nap. I have never been this exhausted. I had to make an appointment to see a pulmonologist to sort out my lung issues. naturally, this all happened the week of my son's wedding. The pulmonologist did a blood gas and pulmonary function test, ordered a CT scan of my lungs and placed me on a stronger antibiotic and an inhaler to try and calm the cough. I got through the wedding weekend, though it involved a lot more sitting on the sidelines than I would have liked. My son and I worked out a sign with the DJ so they could fade out the music sooner on our mom/son dance. I love to dance if I feel good, but the reception was more swaying in place with arm movements for short bursts.
The Monday after the wedding I had my chest CT scan and a rehuematologist appointment, with lab draws. Friday I got a call from the rheumey's office telling me my hemoglobin, which is usually low in the 10's had dipped to 8.9. I made an appointment to go back the following week for a redraw. Wednesday was my pulmonary re-visit. Not only did I have the partially inflated lungs, but the CT scan showed arthritis in my ribs. He also thought that my Sjogren's was contributing to the picture, as the drying out of my secretions also affected my lungs. Then came a bit of news...I probably have adult onset asthma, with the cough aggravating my airways by spasming. Add another medication...a daily steroid inhaler. Thursday I went and had my labs redrawn, Friday I started spiking a fever of 102, Saturday am I am back in the Primary Care office with a whopper of a urinary tract infection and on antibiotic #3, and longing for my Enbrel. Tuesday I got a call from my rheumey's office. My hemoglobin dropped again to 8.7. Now I get to see a hematologist. I call for an appointment, they can work me in the end of April. I finally talk the appointment clerk in to my speaking with a nurse. I tell her I am short of breath, tachycardic, exhausted and barely move from point A to point B in the house, and she manages to squeeze me in on March 22. Saturday March 5th I had a primary care follow-up. My throat is raw and scratchy, I'm thinking allergies or the result from coughing. but no... have a positive culture for strep throat, so back on to antibiotics. By my followup yesterday morning, I am left with the anemia,short of breath and exhausted. The doctor tells me she hopes they give me a transfusion Tuesday, and I know I want that too. She also extended my short term disability indefinitely.
When my hemoglobin always stayed in the 10's about 4 years ago, I got a complete GI and endocrine workups, which were both negative. I never really though about my hemoglobin dropping below 9. With that I have spent the past 2 weeks googling anemia and RA, trying to put the dire side effects and diagnoses out of my mind. As the appointment gets closer I find myself looking into the unknown and somewhat scary causes of anemia and praying it's just something minor. I suppose I will have all sorts of adventures in diagnosing this; I just hope and pray they can make me feel better in the meantime.

Wednesday, December 22, 2010

Merry Christmas, Knee

Was reading all the posts from this year. Amazing how everything changes in 6 months. I have officially flunked Simponi. Back on Enbrel since the end of November, and it's not working either.
Stress is the defining factor in my end of year flare. I tend to hold a lot of it in, because nobody wants to hear about my RA. I am thankful to my RA groups and a few close friends who also have RA and PA, they can relate to flares.
I have had several major stresses in the past few months.My brother had all his utilities cut off and was evicted from his rental house a week ago. He knew it was coming and wanted me to bail him out with $ and let him live in my house. I had to stand firm and say no, except for a few $ for food. Suffice it to say he won't help himself.He is now with a friend and is planning to move to Alabama to be near our other brother.
My other stress is work. I work as an RN in the nursery of a small hospital. OB is not a money maker for any hospital, and rumors have been flying around all year about our unit closing. No one will say what's going on, but we have given one 14 bed wing to surgical patients and are expected to cross train to care for them. There are mostly joint replacement surgeries and other "clean" surgeries (no infections) Most OB nurses have never worked anything But OB. The rest of us left other types of hospital units because we hated it. So the introduction of male patients, elderly and slightly confused patients, plastic surgeries (total overhauls), and the ever embarassing penile implants has gone over like a lead balloon. We have lost over 20 of our best nurses, and the rest of us are job hunting.
If they close the OB unit, most of us would leave. Hopefully they will let us transfer to the big hospital downtown, as they are going to have to absorb our OB patients. The threat of the unknown is a huge stress.
My FMLA for chronic illness was another hassle. Should have been approved in July. But I had to work so many hours (hidden federal law) before they's approve it again. Finally got it approved in late November; along with a verbal warning because I called off twice this quarter for my RA before the FMLA got approved. I literally faxed Human resources my FMLA forms every work day for a month so if I had the magic number they had the paperwork.
SO, I have spent the last 2 weeks spiralling downward with my RA..joints sore, exhausted from lack of sleep, my eyes and mouth drier than the Sahara desert. My left knee has ballooned. Was finally able to get in to the rheumey yesterday. Got a cortisone injection in my left knee, and we are going to persue the IV Actemra.
I asked her "when is it enough to stop working?" I have trouble holding the heavier kids, opening baby bottles or maintaing a grip on a tiny wiggling hand or foot. Computer charting 6 hours out of twelve is wreaking havoc with my hands and wrists. The doc mentioned I might consider having a functionality exam to see what limitations Ihave... would probably have that done privately, don't want it under my work insurance.
My best bet would to be going out on disability while I am still employed full time. Once I go to part time I am no longer eligible for my STD or long term disability.
Will have to see how it goes with the function exam.
Anyway, I am now off until Decmber 30th....yay! And I have to organize Christmas in the next 3 days. Hoping my knee injection kicks in soon so I can at least grocery shop.
All for now. Have a wonderful Holiday, and a Happy, healthy new year! I am blessed to have you all as my comrades in the RA Army!

Monday, June 7, 2010

here I go again

Time for a new biologic in the battle to conquer/tame my RA.
Thank goodness biologics are not a college course with a grade because I have failed 5 of them so far. Each one lasted about about a year before they weren't really helping. I was actually on Enbrel for 2.5 years, but the last year I was in a drug study that added Rituxan to the mix with the Enbrel....not that it did anything besides totally deplete my immune system and made me use up all my sick time because caught every bug around.
The drug study ended in February, and I am no longer eligible for another drug study until late fall. So, I quit taking my Enbrel the beginning of May and now I am on Simponi. Took my first dose today...have to admit the sample dose from the rheumey's office came in handy since my insurance wants to play games approving it. Pulled the autoinjector out of the box 30 minutes before the dose and took one look at the injector device and just about quit before I started...that thing was huge, and it delivered the same .50mL dose as the enbrel in a pen six time the size! Thankfully it was easy to use after watching the video on the web page, and it hurt a lot less than the Enbrel pens did.
I suppose it takes a few weeks to feel any effect. I didn't do too bad off the enbrel, had a couple of bad days, but nothing major that wasn't solved by lidoderm patches or pain meds or and extra prednisone.
Never had any injection reactions before, but tonight my thigh hurts like i got a tetanus redness or swelling, just achey. Anybody else on Simponi and want to trade stories? Going to get my cold pack out of the fridge and use it on my leg for a while before bed.
On the bright side, I have a new "grandchild" that arrived Sunday. My son and his fiance adopted a kitten from the shelter and i got to go play with him yesterday. Nothing like some good old fashioned kitten love to brighten your day!

Wednesday, March 10, 2010

And the bricks come tumbling down....

Well, the remission was good while it lasted.Tuesday the second, my knuckles flared, and by Wednesday night I started having pain in my lower cervical vertebrae. Tried all the tools in my box of tricks...nothing calmed that neck pain for more than an hour or so. Saturday I was a mess. My neck hurt so bad I could barely move. I drove to the urgent care center where they took xrays and told me I had arthritis in my c-spine. The doctor that did my exam said he'd never seen a cervical vertebra feel so hot before. He prescribed a larger dose prednisone dose pack, keep taking my pain meds and use ice/heat whatever felt good.Spent the weekend in bed, I was having headaches form the neck pain.
Monday I couldn't really feel a difference, so I called the rheumatologist and was able to get in Tuesday am. By then my whole back was spasming from sleeping funny and guarding my neck. I could barely get up off the sofa. My
rheumy was very surprised to see, as I had been there March first and was perfect.
Tuesday's appointment really didn't get me anything other than a prescription for Flector patches (voltaren in a 12 hour patch) Thank goodness they had samples, because the pharmacy had to order it. (and now that I have them they don't help all that much!)
It's now been two and a half weeks. Thankfully my neck has calmed down somewhat, and my back is slightly more forgiving (Thanks to the fine folks at Massage Envy and physical therapy.)
I was so happy in was so nice to step out of bed in the morning without sore feet or having aching fingers for a change. For the most part my fingers and toes are still 95% painless, but I can tell they are more swollen and stiff.
The relief of having no pain for wa hile also meant I was more independant. My son did not have to come over and carry in the heavy groceries or housekeeping. I actually felt like I was on top of everything for a change. I realize now that maybe I was overdoing it. I still don't know what caused the neck flare, but know it was surely the most painful flare I ever had. The neck still gets sore from typing or when I look down, but I have been able to work this week, and hope to get a little done in the yard tomorrow while the weather is good.
All for now...gentle hugs!

Monday, March 1, 2010

Remission Guilt

I have to admit, I don't know what to do. Since I was disgnosed with RA in 2003, I have never had a remission as long as this one. I am officially 34 days without a flare. I am only on my methrexate and Enbrel, and am tapering off my prednisone (down to 5 mg)
My mild Florida winter has been full of extreme temperature changes every 3-4 days, that last year would have been pretty much incapacitating, keeping me home in bed on percocet and steroid packs and feeling miserable to boot. I have so much more stress at this time in my life (Job woes, job interviewing, son getting married,economy stinks) that I would normally have been pushed in to a flare.
I should be so happy enbracing the fact that I feel good for a change. I didn't start a new diet, eliminate foods or try some over the counter miracle drug. The only thing that may have made a difference is my going back on to my premarin (hormone replacement)after 3 years of fighting with my primary doc. ("you'll increase your risk of cancer or heart disease"....yeah, so I was on every biologic in the past 5 years, plus Rituxan, a chemo...and I'm still here. Difference is I feel more human not to be having 100 embarassing hot flashes a week; especially since I work in the nursery with newborns under overhead warmers..not cool to drip on the babies while I have the mother of all hot flashes.
I still, however feel guilty. Why should all my RA friends not be able to achieve some part of this happy and painless state? I live looking over on shoulder witing for the RA shoe to drop again, but in the meantime I catch up with some long overdue projects while I can.
At my last Rheumey visit in January (also my last clinical trial date marking 6 months since my last Rituxan and enbrel combo)we discussed moving in to another clinical trial using Actemra. I have been thinking about this for several weeks..I don't want to rock the good boat I am on right now with just the MTX and Enbrel. I like where I am right now and want to stay here for a while. So, after weeks of thinking I plan to just stay on the status quo and see where it takes me.
I have some interesting things ahead on the horizon, the most exciting is the possibility of a new job...should get word this week on that, I thought my interviews were excellent, and this time I can actually keep my fingers crossed!
Wish me luck, and have a pain-free day!