December 23, 2010

The morning I stopped the Prednisone I collapsed on the floor and was in and out of consciousness.  My son called my husband at work and told him to come home quick.  I came to and had terrible stomach pain.  In the weeks before I  had been suffering from a lot of gas pain, possibly due to the Plaquenil.  A friend with RA advised me to start drinking Mylanta which helped tremendously.  I have to eat frequently and stay away from carbonated drinks or I’m in a lot of pain. 

December 19, 2010

When I was on the Prednisone I got my family room painted, Christmas shopping completed, house organized, etc.  I worked so hard knowing that once I went off I would be basically useless.   I still felt some pain on the Prednisone in my elbows and ankles, but not enough to slow me down completely.  I was back to sleeping 7 hours a night and I felt somewhat normal again.

December 17, 2010

Maddie is doing great, running, playing, skipping, and jumping. She is tolerating the steroid and Naproxen quite well.  We've noticed her already puffy cheeks getting more puffy.  We call her our little chipmunk. 

December 05, 2010

My in-laws are really upset that we allowed Maddie to be put on steroids. I mean, how could we do such an awful thing to a child? Too bad they live hundreds of miles away and weren't able to witness the discouraging sight of an 8-year-old crawling around the house because she was unable to walk.

December 04, 2010

Every hour I would evaluate Maddie's progress. Upon waking she still couldn't walk. At 2pm today (Saturday) Maddie could walk, dance, and do cartwheels. We think it's a miracle.  She started prednisone yesterday but the doctor said it wouldn't take full effect until Sunday or Monday. She danced in the Nutcracker tonight at the performing arts center and did a beautiful job.

December 03, 2010

Happy Birthday to me. I spent it at Children's Hospital with Maddie. Still unable to walk, I stuck her in a stroller that was way too small for her and wheeled her to the Rheumatologist.  She was supposed to be dancing in the Nutcracker this morning, outreach performances for school groups. Instead she was at the doctor. Her Pediatric Rheumatologist is fabulous.  He put her on prednisone right away and said he'd keep her on it for 5-6 weeks, weening her off slowly. If her arthritis was still bothering her after coming off the steroid he would put her on methotrexate. The doctor was very interested in my arthritis and was actually more helpful than my own Rheumatologist. He suspects Psoriatic Arthritis because that would be the type that could link our diseases.

November 29, 2010

Maddie is having an arthritis flair in her left ankle. She goes months between flairs and they have always been in her knees. This one hit hard and fast.  She started complaining of pain a couple days ago and now she is unable to walk. The Naproxen doesn't seem to be helping. I called her primary care doctor and her Rheumatologist and requested a wheelchair or crutches. I can't carry her with my arthritic back. Both doctors said no, she would have to be seen first. This couldn't have come at a worse time. Maddie is performing in the Nutcracker this weekend, that is if she can even walk.

November 23, 2010

I decided to wait before I start the Prednisone, knowing I'll need it to get through December.  I am only allowed to be on it for 3 weeks so I am timing it to get me through all the holiday festivities.  

November 22, 2010

This second Rheumatologist was so much better than the first.  First she chewed me out for switching doctors within the office and not seeing my Rheumatologist.  I told her I didn't like the first doctor I saw, she wasn't thorough, and I got the feeling she thought I was making the whole thing up.  Then this second Rheumatologist examined me and was very thorough, carefully feeling each joint in my body. She really didn't have a choice, she had to be thorough after how I had just badmouthed her colleague. My joints don't look swollen, but she discovered inflammation in several joints, not as many as were hurting, but at least she knew I wasn’t making up the pain.  She ordered more x-rays and blood work and prescribed Plaquenil and Prednisone, keeping me on the Meloxicam as well.  I made an appointment to see her two months later.

November 21, 2010

My appointment with the second Rheumatologist is tomorrow. She's in the same office as the first Rheumatologist but I didn't have any choice in that matter. My insurance is Kaiser Permanente and this is their only Rheumatology location in the entire county. The pain and stiffness has spread to my elbows now which more than anything is just annoying.  It's definitely worse in the morning and after 8pm when I'm tired.  I used to get about 7-8 hours of sleep at night, but lately I've needed 9-10 hours. Of course, as my luck would have it, the bumpy patch on my elbow is all gone so I can't show it to the doctor. If it was psoriasis it would make a diagnosis so much easier to come by.

November 05, 2010

Today I was trying to demonstrate a musical phrase for a student from a little Bach Minuet. I couldn't play it.  My fingers wouldn't move where I wanted them to move. They were stiff and painful and unable to play a song I've been playing since I was 7. That was my last student of the day, thank goodness. Because after he left I cried.  

October 29, 2010

This psoriasis on my elbow looks just like a bumpy patch I had on my finger in the summer.  It lasted for several weeks and was a bit itchy but very bothersome. When I first saw the Rheumatologist I told her I had a patch on my finger but she said psoriasis wouldn't be on a finger. Maybe she's wrong. I never had psoriasis before this.

October 28, 2010

I was told it would take 5 days to feel the full effects of the Meloxicam so I waited, in pain.  It's been two weeks and I'm in a lot of pain.  I called the Rheumatology department today and made an appointment with a different Rheumatologist.  I told them I needed to get in ASAP.  I have an appointment in two weeks.  I have a constant dull pain in my back, ankles, toes, fingers, and wrists.  The pain feels like it is coming from my bones and caused me to tremble, bringing me to tears at times, unless I am busy doing something.  I don't have a fever or flu symptoms.  I am not depressed, just really angry that I'm in pain.

October 26, 2010

I have a bumpy patch on my left elbow.  It has been bothering me for a few days, a bit itchy and bothersome.  I grabbed a hand mirror to see what it was and it didn't look like any rash I had seen before.  I got onto the Internet with mirror in hand and started researching skin rashes.  I've ruled out eczema, hives, and hundreds of other rashes.  But this resembles psoriasis, a very mild psoriasis.  I'm convinced I'm right.  It's the only diagnosis that makes sense considering the arthritis I'm dealing with.  

October 15, 2010

Yesterday I didn’t take the Naproxen because I was seeing the Rheumatologist today and I wanted the doctor to see me at my worst.  It was a horrible night of tossing, turning, and pain.  The Rheumatologist did a fairly quick examination, said she didn’t see swelling and that It didn’t look like RA.   She ruled our Lupus and Fibromyalgia.  I got the feeling she didn’t believe me and my pain.  Even though I told her I hadn't been sick for months she insisted it was a virus that would go away eventually.  She changed my anti-inflammatory medicine to Meloxicam and told me to return in 3 months.  

October 13, 2010

Today I noticed swelling in another knuckle and my lower back is really hurting.  I took my youngest daughter to the pumpkin patch this morning and had trouble walking around.  At one point she grabbed my finger as she was running and the pain was excruciating causing me to let out an involuntary scream.  The morning stiffness is getting worse, lasting at least an hour.  This morning it hurt to wash my toes in the shower as they were so tender to the touch.  My husband's answer to the pain was to not wash my toes.  Only a guy would say something like that.

October 12, 2010

My blood work (CBC, RF, SED rate, etc) came back normal but the hand x-rays looked suspicious so I am being referred to a Rheumatologist.

October 08, 2010

I saw my primary care doctor today and he started me on Naproxen, 500mg a day.  I had been taking about 200mg a day over the counter.  I told the doctor my concerns about the possibility of arthritis because my daughter has JRA.  He said there is absolutely no arthritis connection, parent to child.  My hands, wrists, ankles, and toes are all hurting.  The doctor had me do lots of blood work and hand x-rays.

October 05, 2010

I fought back the tears as I played the organ in church today.  It was a bit painful for my ankles and hands but I was mainly feeling sorry for myself wondering how long I would be able to keep this up before I had to quit altogether.

October 04, 2010

In early September, 2010, I was accompanying a church choir on the piano.  I remember being asked to play louder and I responded that I was already playing so loud that my fingers hurt.  That should have tipped me off right away.  My fingers shouldn’t hurt while playing.   I think they had started hurting weeks before but it was so gradual I didn’t even notice until late September.  I started having shooting pains coming from my right pinky knuckle when I played the piano, mainly when my hand was stretching to reach large intervals.  That’s when I got concerned.  I am a pianist and a piano teacher and it hurts to do my job.  Now both pinkies are in pain when I play.  I thought my pinky knuckles appeared larger but maybe that's my imagination.  My toes started hurting the other day when I wiggled them.  All my fingers hurt too.