Closing a chapter

It occurred to me this morning that I hadn't written anything for this blog for awhile. I think that is a good sign. I am feeling better - SO MUCH BETTER - that it doesn't occur to me to write about my "Life with Lupus" anymore. I am not my disease and lupus does not define me or my life.

I am not saying that I'm going to ignore my symptoms or return to being a bad patient, I will take care of myself - I AM TAKING CARE OF MYSELF! I just don't want to dwell on it anymore. I will focus my writing energies on my "Tales from an Empty Nest" blog completely.

Thank you for reading this blog. It did help me keep track of my care and it may have helped a few other people along the way. It's just time to close this chapter of my life. Onward and upward!

Onward! Upward!

I had a busy day in San Francisco last Tuesday. The day started with Ron dropping me off at the lab at UCSF for fasting blood-work. Next, it was a mad dash over to the PT clinic for my weekly therapy session. After my therapist thoroughly wore me out, Ron and I raced back to 400 Parnassus Ave. to see my endocrinologist. Traveling to each appointment and making it on time was therapy in itself!

So here is the scoop - all my blood tests have been coming back within normal ranges! Dr. Gardner says that my adrenal glands are functioning normally so he is signing off on my case. Yay! One less doctor to visit!

I find that I am getting back to my usual activities and am feeling more stable. By that I mean that I'm not feeling like my legs are weak and wobbly anymore. My balance is pretty good and I don't worry about falling - not saying that I'm not being careful, though, I am VERY careful. I always hold onto the banister or railing when going up or down the stairs and I take the stairs instead of the escalator or elevator if I can.

My biggest complaints right now are joint pains and power surges (hot flashes!). I do wish that I had more energy and stamina, but all in all, I feel pretty good!

Turning the page....

It's a new day.

Last Thursday I saw my new rheumatologist. This is one of the doctors that took care of me when I was in the hospital. I have had several follow up appointments with doctors that saw me at the hospital when I was at my worst. Their reactions to seeing me walking on my own steam are very gratifying. I guess I look a little different now!

Anyway, my new and improved rheumatologist has a great philosophy - "first do no harm...." After a thorough examination, she explained to me that too often, any symptom that a lupus sufferer experiences isn't necessarily attributable to lupus. Unfortunately, up to now I have been prescribed lupus medications for aches and pains that aren't necessarily caused by my having lupus. She thinks that I may have Fibromyalgia.

"Fibromyalgia is a medically unexplained syndrome characterized by chronic widespread pain and a heightened and painful response to pressure (allodynia). Other core symptoms are debilitating fatigue, sleep disturbance, and joint stiffness."

Apparently, it is not uncommon for someone with lupus to also have fibromyalgia. It's amazing how much I still don't know about my illness and myself even though I've had this lupus diagnosis for 22 years. Instead of putting me on any different medications, Dr. G has prescribed exercise, a routine sleep schedule and yoga! She ordered quite a number of lab tests and we will go from there.

I am thrilled with all of my new doctors. It's certainly out of the way to have to have Ron drive me to San Francisco to see them since I'm not allowed to drive yet, but it's absolutely worth it to see these doctors. My new physicians are all connected to UCSF Medical Center and include general medicine, rheumatology, neurology, infectious disease and endocrinology specialties. When I get "back to normal" I will only be seeing my primary care physician and my rheumatologist and that will be ok with me.

Did I mention that both of these doctors are women? Cool, huh?

Research on Lupus

Here are some interesting graphics revealing research done on different aspects of having lupus and living with the disease. I found them interesting and decided to share.

http://knowlupus.info/lupusFull.html

http://www.knowlupus.info/career/lupusFull.html

http://knowlupus.info/gender/lupusFull.html

http://www.multivu.com/mnr/53462-roper-survey-reveals-lupus-communication-gap-silent-on-true-impact

Good-bye, Benlysta...

As much as I had hoped it would work for me, I had to come to the conclusion that Benlysta was not for me. It appears to be a viable option for many, I just don't happen to be one of them.

During my recent hospitalization, I learned a lot about myself. I found that I too willingly did everything my doctor said without questioning him. I was a terrible patient and did not advocate for myself. I should have educated myself more on the side effects of my various medications. Because I have serious concerns about the mistakes that my doctor made with my medications and care, I now have a new rheumatologist.

I have written about what happened to me in my other blog and you can find it here if you want to know the whole story -  http://queenlaurabee.blogspot.com/2012/09/only-human.html

A Long Week

Today was the end of my 9th week at home...this was by far the most difficult week I've had yet. I have tried to keep a stiff upper lip and a positive attitude, but I am so tired.

I saw my rheumatologist this week which was good. I went in with a long list of questions and concerns which he addressed one by one. The ongoing, relentless fatigue - he is scheduling me for a sleep study. He thinks it may be likely that I have sleep apnea. It wouldn't surprise me. I have always been a very shallow breather. So, this study may be scheduled by the end of next week. Let's hope. I may get to be one of those people who gets to wear one of those sexy CPAP machines to bed. I won't care as long as I GET SOME SLEEP! He would like to have the study done before starting me on B-12 shots or pills or anything else. He did adjust one of my medications and it does appear to be helping a bit.


I am also being scheduled to see an ophthalmologist. I have been having trouble with fuzzy vision - one of my medications is plaquenil (I have been taking this med for about 15 years without any problem). It may be time to try something different. He ordered more lab work and a thyroid panel. It's all about waiting for things to be scheduled and the results of the lab tests now.


In the meantime, I still have thrush. I finished a 2 week course of medication for it and I still have thrush. So today I started a new medication that will hopefully solve that problem. I have lost 25 pounds. I am eating healthy meals, but don't have much of an appetite these days. I'm sure this has something to do with my weakness. I still putter around the house, but I find it more difficult to do little things. I'm slower.

Don't get me wrong. I haven't given up. I'm just tired. It will be better next week - I'm sure of it!

4 month mark

Happy Anniversary to me! Today marks 4 months since I began my Benlysta journey! No balloons, no pinata, but is something to recognize - that's for certain!

So what do I want to tell you about my life today? Well, things are pretty quiet now. I spend the days at home alone....

                                                             

No, it's not as bad as all that! I'm just trying to keep things light! Actually, this alone time is ok. I am focusing on things that I haven't had time to do in a very long time and it's a good thing. I am starting to collect the books that I really want to read. Yesterday I finally received a book called How To Be Sick - A Buddhist-Inspired Guide for the Chronically Ill And Their Caregivers. It's a mouthful, huh? But it was recommended reading by the "Lupus Now - Lupus Foundation of America, Inc." I also have another book coming called Coping with Lupus. Knowledge is power, right?!

Otherwise, I putter around the house and put things in order - something I haven't had the time to do in years. This is something I do V - E - R - Y slowly. My fatigue limits much that I can do, so there are lots of rest periods in between. I do feel satisfied that I am able to do little things - small victories mean a lot to me.

I am able to cook and eat really healthy meals and Ron is benefiting from this as well. Our insides are much happier these days. Hopefully, when I am able to do a little more exercise, the outside will start to show it, too. I have dusted off the stationary bike and spend at least 5 minutes on it in the morning. Sometimes, another ride at the end of the day would be just too much. I am averaging 3 times down and back up the stairs everyday.

I have no joint pain, no chest pain, no pleurisy, no nausea. Remaining symptoms are FATIGUE, headache, dizziness, thrush, and some brain fog. I can only assume that the fog is coming from all the medication. I write EVERYTHING down so that I don't forget things.

So, all in all, things are ok. Don't worry about me. It's all a process. Ron and I and Dr. N are committed to see this through. I am ever optimistic and am waiting for Benlysta to turn this all around. After all, remember the part above where I say that I am not in pain!!!

Infusion #7 is on August 2nd...3 weeks from today!!!!