I know I’ve been posting a lot of random things lately about my health, and so I thought I’d use this last journal entry to educate any of you who still may not be clear with what is going on with me.
Almost 8 weeks ago, I noticed my muscles were really sore and tight, like after a super-hard workout the previous day. Isaiah had been sick with an ear infection and I caught his cold, so the first two weeks, I attributed it to viral illness. We drove the 19 hours to San Diego as planned, and while I had difficulty getting dressed and washing my hair, I wasn’t overly concerned. We were in San Diego for two weeks, and I noticed my soreness was increasing and became more concerned. I went to the Naval Base ER and got on an antibiotic and felt hopeful for recovery.
I took an extra day driving home just to make sure I wasn’t overdoing it with my health, and the kids, dogs and I all arrived safely on Monday, July 12. All my body wanted me to do was rest and my muscle fatigue/weakness was definately worse. I could no longer squat down and tie my shoes, even sitting down and standing up were difficult. I wanted to have the house just perfect for when Earl returned, but I started to realize I had to let go of some of my control issues if I wasn’t going to lose my sanity. I begin giving the kids more chores around the house and resting on the couch a lot. I was able to unpack and then the girls did all the little cleaning jobs to make the house look nice for Earl.
The day after we returned from San Diego, I got into my primary care provider to tell him about my symptoms that had been getting worse over the previous 4 weeks. I saw him the next day and he ordered lab work and sent me on my way. 3 days later, they called me back in to say that my CK (Creatinine Kinase) was extremely elevated. This lab test shows muscle damage/inflammation and a normal result is less than 140. My result was over 9,000. He started me on Predisone immediately, which suppresses the immune system. He wanted to wait on another lab to see if I had certain antibodies that would indicate an actual autoimmune disease.
That next Monday, I called the office and they confirmed that there was an autoimmune disease process going on, and they would be referring me to a specialist. This is where the frustrating part began. Tricare needed to approve the specialist, and then after the approval, the Specialist scheduled me 4 weeks out to be seen. After several phone calls to my primary care provider, he spoke to the Specialist directly and I was scheduled to be seen the next day! Being your own advocate is CRUCIAL in healthcare…praise the Lord for my RN background and persistance! The other terrible thing about this Monday is that we took our little Princess in and her back injury was too far gone, so we had to have her put to sleep. Talk about crying!
I saw Dr. Titova on her lunch hour the following day and she is incredible. She told me that she thought I had polymyositis, but that it was extremely rare and they needed to definately pinpoint it down and that would require lots of diagnostic tests. She increased my Predisone dose because I was increasingly becoming weaker, not better. They drew 18 vials of blood (not kidding), took a urine sample, did hand and chest x-rays and scheduled 3 other procedures to be done in the next 5 days.
The first procedure was an eletrodiagnostic study which involved placing needles in my leg muscles and firing electricity into them to test response/damage. The doctor said that I was a 10/10 on the damage scale…one of the worst he’d seen. That was performed on Friday, July 30th. I was home over the weekend and continued on my Prednisone. That is a harsh drugs with many side-effects, the main one I’ve complained about is insomnia/restlessness. (You may have noticed it’s 0349 as I’m writing this-LOL).
Anyway, Monday, August 2nd, I went in for my MRI of my lower extremities, which took almost 3 hours to do. I dozed on and off the first 2 hours, but I almost had a panic attack the last hour. My butt and back were so sore! They did let me get up for one short break, but I NEVER want to to that again! Give me the needles in the legs, please!
Tuesday, the 3rd, I went it to see the surgeon about getting a deep tissue muscle biopsy, and thanks to a cancellation (totally God’s hand), I was scheduled the very next morning as his first surgery. They did put me to sleep and left a good 4 inch scar with 9 stitches for me to remember them by. Then, it was just waiting on all these results and hoping the prednisone would soon kick in and help with my muscle fatigue/function.
On Monday, August 9th, I went back to Dr. Titova (my rheumatologist) and she said the electrodiagnostic and MRI alone confirmed the Polymyositis and the biopsy would surely do the same. In my mind, I’m thinking,”Great, now I have this big scar on my thigh and it wasn’t REALLY necessary!” But my glass half-full husband said there’s other things they could find and it would help them with other people down the road, since it is such a rare disease. I love that man 🙂
My focus on Monday was “how handicapped am I going to get?” I already depend on Earl to dress and bathe me, and the kids have to pick up stuff I drop 10 times an hour! My doctor’s concern was short-term treatment. She said if we didn’t get my immune system stopped, it would start to attack the muscles affecting my major organs-particurlarly my lungs. So, I had to refocus on day by day treatment and living the best I can right now. That is also why I decided to cut my hair…I could no longer care for it because of my limited range of motion above my head.
Her aggressive treatment is as follows; 3 IV infusions of methylpredisone, which is a super kick-start to shutting down my immune system. I received my first infusion Wed. the 11th, and am going in today and tomorrow for another one-hour infusion. Next week, I’ll be getting a low-dose chemotherapy drug called Rituxan. I will receive it once a week for 4 weeks and my doctor is hoping I will see major improvement in muscle damage and functionality. It’s not actually approved for PM(that’s the cool lingo, now you know), but she gave an example of a 19 year old who couldn’t even feed himself, and after getting this drug, saw improvement the first week. She also told me to expect to be on Predisone pills for at least another 6 months. All of this is designed to “kill” my immune system, before it “kills” me.
If you’ve been following my status updates, you’ll know that I can’t sleep well. That has been a bonus in that I’ve gotten a lot of organizing done around the house, as long as I don’t have to reach up high or low! I had a major blow to my pride today when I took Isaiah to soccer camp and tried to climb the bleachers on my own. I fell really hard in front of all the parents, and because of my weak arms, I couldn’t get up. I was just laying there like a beached whale…very humiliating. The parents were all super nice, but I tried to explain what was wrong with me and just started crying. It’s hard, because I look normal on the outside, but feel like a bowl of Jello on the inside!
Earl has been INCREDIBLE!!! God’s timing and hand are in this all the way. If he were still deployed, I would be stressed trying to go to all these appointments, keep the kids fed and cared for…not to mention myself. We have such wonderful friends here and they have been helping us too.
I appreciate all your prayers, and I recognize so many of you are going through hardships of your own. We are growing so close to God through this, and I’m praying more for others than myself now. I would like to request special prayers for Earl and the kids. Coming home from war is an adjustment in itself, but to come home as a caretaker to a sick wife is an extra stressor for him. Also, I can tell the kids are confused about my illness. Here they’ve been without Daddy for a year, and now Mommy can’t pick them up or play with them(I am still reading books to them, so don’t worry).
I love you all and hope this is informative but not TMI…I know you all have lots going on and I don’t want to be self-centered. This is my life and I’m sharing it. 🙂 Have a wonderful week/weekend and send messages/call anytime. I’m trying to stay busy with stuff I can do easily, so if you see me pushing Scentsy products more, don’t get annoyed! I had been praying about going back to work as an RN when Earl returned, so this is a definate “no” from the Lord on that! I’m also going to stay as involved as I can with my PWOC Bible study group, and Earl and I are getting to know the people in our Sunday School class too.
Kathy’s cell: 253-228-4145
Earl’s cell: 253-228-2315