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.

1 comment:

  1. 4 years ago, I was diagnosed with RA. At first, I didn't take it seriously until it started to ruin my life. I have missed a lot of gatherings, wasn't able to do important tasks, turned down my tennis team, all because of the tremendous joint pain. I have consulted 3 different doctors, have gone through a lot of lab tests and medications, but none of them cured me. I tried stem cell therapy with my 4th doctor, Dr Purita, and it went really well. I had slight fever for 2 days after the treatment, but never had RA attack since then. I am hoping that this will inspire other RA patients too.