So here I am...

a year and a half later. Fortunately lupus is not one of my problems. Lupus is one of those diseases that cannot be diagnosed with one blood test, or a particular set of symptoms, or in any other definite way. After reviewing all of the information about me, the rheumatologist decided that I didn't have lupus. Unfortunately she didn't tell me until the next appointment which was months away, and only then because I asked her. (I've got a lot to learn about communicating with doctors. This has been made evident this year especially in dealing with my mother's medical problems.) I do, however, have Sjogren's Syndrome. Just learning to spell it is enough of a challenge without learning how to deal with its effects.

The most common symptoms include dry eyes, dry mouth, fatigue and musculoskeletal pain. Yep.. I've got all of that and brain fog. www.sjogrens.org/home/about-sjogrens-syndrome/symptoms has a very informative human body labeled with ways in which Sjogren's can effect the body. I'm dealing with this. People may raise their eyebrows when they see me chewing gum constantly and putting eyedrops in my eyes, but that's their problem.

The major medical problem of the year for me has be Total Knee joint Replacement (TKR) of my left knee. I could almost pinpoint the week that the cartilage completely wore out in that knee. Once it did I could only walk a few steps before horrible stinging pain set in. May 4th was the big day for my surgery. The next few days in the hospital were hell. I hurt. I couldn't get comfortable. And I no longer behaved as a "nice" person. I used to laugh at Randy telling about the hospital staff gladly kicking him out of the hospital. I, too, became that person. I vaguely remember telling one of the PT's that I would do one more leg lift and that was all. When she encouraged me to do at least one more after that I shook my head "no" like a 2 year old and refused to move. I'm not sure that the assertiveness training I learned in therapy this year really applied to this situation, but I asserted myself any way. I got home from the hospital on Friday, May 7th, my birthday. What a wonderful present it was! I was totally away from work for 6 weeks and began working part-time for a few weeks before resuming a full time schedule. I am 12 weeks out of surgery now and the doc says that I am doing well. I still can't buy groceries or enjoy shopping before I have to sit down, but I've been told to be patient. Recovery takes 6 months to a year. Unfortunately I can tell that TKR on the right knee is needed soon.

Now that the medical stuff is out of the way, I am happy with my life. My daughter and the love of her life have bought a house and are adding their special touches to it www.nerdynest.blogspot.com; my mother is aging, but so far is reasonably happy. She is getting good pain relief. When she has needed around the clock care, she has been able to afford it; Randy has survived a triple heart by-pass operation and has mostly recovered from a stroke. I don't know whether to credit his operation and stroke, my operation, or results of my therapy, but he has become more of the friend that I wanted. We see each other or talk on the phone every other day. This is especially amazing since for years we saw each other every two weeks and emailed occassionally during this time.

There are many things I would like to do to improve my life: diet, exercise, keep a well organized house, improve my mind, and the list goes on. Maybe I'll get into the habit of posting more frequently about how I'm achieving those goals. And maybe not. :)

What next?

Yesterday I met with my rheumatologist to discuss results of bloodwork that she had ordered because she thought I might have Sjogren's Syndrome. I've been having severe dry eyes and frequent dry mouth recently. About 9 months ago I was diagnosed with fibromyalgia and have just come to the realization that I have to take care of myself and not overdo activities to keep from having really rotten days. I have always gone full speed ahead. I will keep on doing what I am doing until I am ready to drop ignoring signs of fatigue or pain. The thought that I was going to have to schedule in a new ailment before I had figured out how to manage the fibro left me quite anxious Wednesday night. Thursday morning I awoke anxious. By the time my doctor came in to talk to me I already had tears in my eyes. The news didn't stop with Sjogren's however, she thinks I may have lupus. Yeah... definitely not good news.

So, today I began an even more complicated medicine plan than I already had.

Eleven pills with breakfast: Lipitor, multivitamin, baby aspirin, Celebrex, Celexa, Welbutrin, Lotensin, Norvasc, Strattera, Plaquinil, and Prednisone. There are Restasis drops for my eyes. A vitamin E capsule should be dissolved in water and swished in my mouth 3 times. Tooth care includes the usual brushing and flossing, then a fluoride treatment.

Another 3 swishes of Vitamin E mid-afternoon.

Use Restasis drops again in the early evening.

At bedtime, Lyrica and Plaquinil. And of course the dental plan ... brushing and flossing, vitamin E swishing, and fluoride treatment.

As needed there is Biotene Oral Balance and sugar free gum to combat cotton mouth and preservative free eye drops for my eyes.

I'm tired just thinking about it. Kind of cuts down on spontaneity.

Somehow each day I need to practice relaxation techniques and ride the exercise bike, and strive for self-actualization. So what am I doing tonight? Bitching and procrastinating.

Next week I have 3 medical tests scheduled: echocardiogram, pulmonary function, and barium swallow.

I'm not going to become an invalid, so I've got to get this fuzzy mess sorted into a plan soon.