Saturday, January 4, 2014

The 2013 Roller Coaster and Hope for 2014

Last year (2013) was a bit of a roller coaster.  It started and ended a bit rocky but had a fantastic middle.  The year began with my divorce.  I then enjoyed the healthiest several months of my entire adult life.  My strength and endurance improved so much that I was able to start exercising (in a limited fashion) again.  I was happy and healthy.  I could easily do things I hadn't done much of in years -- I went out with friends.  I took long walks.  I traveled.  I went dancing.  The most amazing part is that I did all these things without a major crash. 

Unfortunately, my good health decided to take a sabbatical around October.  It started with strep throat and a round of antibiotics.  Then I caught a nasty cold with a cough so bad it required codeine cough medicine (not as fun as you might think) just so I could sleep through the night.  I got another strep infection -- this time it was much worse with a higher fever and more swelling, pain, and puss on the tonsils (yum!) -- and went on another round of antibiotics.

At some point I managed to catch a case of bacterial pinkeye (which required antibiotic drops) and another strep infection (and more antibiotics), though I suspect it was the same strep infection all along that was not getting fully cured with the antibiotics.  Finally, I ended 2013 with not one but TWO urinary tract infections, each of which required a round of antibiotics.  To make these last few months even more enjoyable, I suffered from multiple cases of diarrhea and yeast infections due to all the antibiotics (despite taking high doses of probiotics).  Fun times.  

Whew! In case you weren't counting, I was on six different antibiotics from October through December. 

On the bright side, I have not lost too much of my strength and have still been able to keep active.  On the down side, I'm concerned about the toll the antibiotics have taken on my body, and I'm worried about my immune system and why it decided to fail me so much at the end of the year.  Was I just unlucky?  Was I doing too much and pushing my body too hard?  Or is there something else going on that I need to be concerned about?

I'll be making an appointment with my rheumatologist soon.

Looking back at 2013, I have to say that the great improvement in my health and quality of life thanks in large part to the CoQ10 and Plaquenil made it a good year overall.  The rocky patches were undoubtedly rough and extremely unpleasant, but I've come through relatively unscathed. 

I finished my last round of antibiotics a few days ago.  As of this moment, as far as I know, I don't have any infections (bacterial, yeast, or otherwise) and feel generally fine other than a headache.  I'll consider this a good start to 2014.  It's the little things, right?

I've got hope that 2014 will be a good year for me.  I hope it's a good one for you, too! 

Thursday, November 28, 2013

Three Things I'm Thankful For

Image from

I'm Thankful for...

  1. Improved health (and doctors who listen).  I missed out on a lot of things in my twenties and early thirties, so my improved health is letting me make up for lost time.  I've been out and about more in the last year than I had been in the last ten years.  I've had the best health of my life this year (thanks to a few awesome doctors who took me seriously), and I don't ever want to take it for granted. 
  2. Resilient spirit. Last year was a tough one when my marriage came to an end.  I am so grateful that my spirit was much more resilient than I gave it credit for.  With the help of a good counselor and the support of family and friends, I was able to bounce back in positive, healthy way. I'm now enjoying this new chapter of my life. 
  3. Family and friends.  Speaking of family and friends, I am thankful to have them!  Simply put, they just make life better. 
There's plenty more that I'm thankful for, but I wanted to highlight my top three for 2013.  Happy Thanksgiving to all who celebrate!

Thursday, October 31, 2013

Part III: Almost Normal

Hello folks!

I'm so sorry about my long absence.  This time I've been away because I've been feeling good and have been out and about almost like a normal person.  I suppose you can say I've been making up for lost time.

I'm actually recovering from a nasty throat infection right now, but I'm otherwise doing well.

The biggest improvement has been with my energy.  After taking high doses* of CoQ10 (prescribed by my neurologist after a test confirmed I had low levels of it) for over a year, I have more energy than I've had in my entire adult life.  I don't make this statement lightly, and I'm definitely not saying that CoQ10 has "cured" me.  What it has done, however, is help improve the way my muscles make and process energy.

The improved energy allowed me to start exercising over the summer (with permission and specific guidelines from my doctors), something that would have been impossible just two years ago.  Unless I'm feeling ill, I exercise once a week for about 25 minutes with a trainer.  That's really my only formal exercise in a given week, but it's still 100% more than I used to do!

Before I agreed to work with my trainer, I interviewed him and made sure he understood where I was coming from physically.  Even though I looked young and healthy on the outside, I had the muscle atrophy of a 70 year old.  I also explained the instructions from my doctors.  No free weights because they're tough on the joints.  Bands are ok.  No heavy aerobic exercise because they could damage my muscles.  Low impact is fine.  He understood and really got it.

Around the time I started exercising, I started taking generic Plaquenil.  This medication is often prescribed for autoimmune diseases such as lupus and rheumatoid arthritis.  Though I can't tell for certain, I think this medication is helping me as well.  The joint pain in my hands seems to have decreased.

Fast forward to today.  I saw my neurologist this afternoon, and she confirmed my strength has increased.  This is the second visit in a row that she said my strength has increased, so I'm thrilled to know I'm on the right track.

We both think my improvement may be due to a combination of factors: the CoQ10, Plaquenil, and the strength building exercises I do with my trainer.  We also agreed that today would be my last visit with her as my neurologist because what I have is not neurological.  I will be continuing my followup with my rheumatologist and primary care physician.

That's all I have for now.  I've got to go to bed!

* Note added November 2, 2013:  I take 400mg of CoQ10 two times per day (total 800mg/day). 

Tuesday, July 23, 2013

Part II: It Still Might Be Lupus or Not...

I have to apologize for taking so long to follow up with my last blog post. I took a bit of a hiatus from blogging (as I do from time to time) to focus on myself.

I'm thrilled to report that I'm the happiest and HEALTHIEST I've been in many years!  :)

Here are updates from my last post Part I: Um, So It Might Be Lupus...:

* The skin biopsy results were inconclusive.  They showed inflammation and allergic reaction, but they didn't prove lupus.  However, they didn't disprove lupus.  Basically, I have two new scars on my arm for pretty much no good reason.  They go well with my muscle biopsy scar on the other arm.

* I love my neurologist. Period. She is one of the most supportive doctors I have encountered in my entire life (and I've encountered a LOT of doctors).  Based on my positive ANA, the skin rashes that appeared after extra sun exposure, and the achy finger joints, she agreed that my symptoms seem autoimmune.  She knew I was going to see a rheumatologist and told me that if my rheumatologist didn't want to put me on Plaquenil, she would just to see if it would help. 

* I saw my rheumatologist, and he agreed that my symptoms seemed autoimmune in nature and put me on Plaquenil.  I still do not meet enough criteria to get an official diagnosis of any particular diagnosis, but he strongly suspects that is the cause.  Though I don't have an official diagnosis, what I seem to have could be called "undifferentiated connective tissue disease."   He wants me to stay on Plaquenil for about six months before we decide whether or not it's helping me. 

* Interestingly, I've also seen a geneticist.  I was referred to her several months ago by my primary care practitioner because of all my seemingly unrelated symptoms.  The geneticist suspects something called Ehlers-Danlos Syndrome, a type of genetic (NOT autoimmune) connective tissue disease.  (Click on the hyperlink to learn more.)  Many people who have EDS were originally misdiagnosed with things like lupus, rheumatoid arthritis and/or fibromyalgia.  Hmmm...very interesting. 

In my next post, I'll go into more detail about these latest developments and explain why I think I've been feeling so healthy. 

Until next time!

Tuesday, May 28, 2013

Part I: Um, So It Might Be Lupus...

Wow.  This month has been full of medical drama with skin biopsies, ignorant nurses, and arrogant dermatologists with a couple of amazingly awesome doctors sprinkled in.

Read my entry Not Mitochondrial Disease, Probably Not Lupus for background.

I received the copy of my ANA results, and they were indeed the same as my previous results (1:160).  Though the nurse told me over the phone that my results were negative, 1:160 is a POSITIVE result and the report actually says "positive" by my number.  I know nurses are human and make mistakes, but telling someone test results are negative when they are actually positive is a major error!

In the meantime my sun rash came back, so I went back to the dermatologist's office assuming I was going to get a biopsy and saw a different doctor in the same practice.  That doctor took one glance at my rash and told me I had keratosis pilaris, which is pretty much like acne.  He didn't look closely at the rash or ask me any questions about my symptoms.  I told him the previous two doctors had mentioned lupus or PMLE as possibilities and asked him about getting a biopsy.  He said a biopsy wasn't necessary because I couldn't have lupus since my ANA was negative.  I told him I had a 1:160.  He looked surprised and said "oh, that's positive."  He then looked at the nurse (the same one who called me before) and said to her: "I thought you said it was negative."

The doctor ended up doing a scrape biopsy on the inside of my right arm, where there was no rash.  I told him that I was confused because it was my understanding that I was supposed to get a biopsy of the rash area.  He said there was no point in doing a biopsy where the rash was because it would only show keratosis pilaris.  Really?  He was that sure of his diagnosis.  He would not answer my questions about lupus or PMLE and dismissed my concerns about doing a biopsy on an area of active rash.

After he left, I tried to get clarification with the nurse, but she was extremely rude and mean to me (probably because she was mad she got in trouble for giving the doctor incorrect info about my ANA results).  When I said I was just trying to get answers to my health questions and figure out why I wasn't a normal thirtysomething, she responded in a terrible tone saying that she's not normal either and everyone has problems.  Ouch.

Yup.  With one comment she completely dismissed the last 15 years of my life -- the years I couldn't work, the ER visits and  hospitalizations, the times on disability, the times I had to be pushed around in wheelchairs because I was too weak to walk, the anaphylaxis, the hair loss, the isolation, the tears.  I realize the nurse must have been having a bad day, but she still managed to make me feel completely crushed and invalidated.  I cried a lot that evening.

The next day or so I decided that I needed to go back to the dermatologist -- the first one who actually suggested the possibility of lupus -- for a biopsy of the active rash area because I didn't know how long my sun rash would stay around.  I got an appointment with her that afternoon.  I told her about my experience with the other doctor in her practice, and she defended him.  Even though she did not think my rash was keratosis pilaris, she defended him and said dermatologists really hate it when patients question their diagnoses.  I was still feeling pretty emotional about my previous encounter, so I immediately burst into tears.    

The doctor backtracked a little and said she understood how frustrating it can be for patients trying to get answers.  She also said it would be a good idea to have a biopsy of a rashy area.

I need to go to bed now.  I'll write more another day.  I still have to talk about my recent neurologist and rheumatologist appointments, as well as the skin biopsy results, of course.

By the way, I do NOT have keratosis pilaris.

Stay tuned...