Showing posts with label update. Show all posts
Showing posts with label update. Show all posts

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). 

Sunday, February 14, 2010

Back in the Saddle Again...I Think...

Hello everyone!

I'm finally back at work. Actually, I've been back since the beginning of this month, but I just haven't had the mental strength to write a post.

The last few months have been some of the most physically exhausting and emotionally draining months I've had in a long time:

Lumbar puncture. Spinal fluid leak. Blood patch. Severe exacerbation of my CFIDS. Nonstop fevers. Nausea. Out of work on disability. Increased frequency and intensity of headaches. Chronic migraines. Insomnia. Memory problems. Epilepsy diagnosis. Out of work even longer. New medications for epilepsy. Side effects. Vulvar vestibulitis diagnosis (female problems). Medical expenses. Etc., etc., etc.

Because everything happened in such a short period of time, I started to feel sorry for myself. I just couldn't get a break! Then after the earthquake in Haiti happened, I felt guilty for feeling sorry for myself because I thought I should be grateful that I had food, water, and shelter. Instead, I felt even worse because I was feeling terrible for myself and the people of Haiti. I was having a pity party.

On the upside, I'm starting to feel better.

Physically, I've improved quite a bit since the lumbar puncture in November. My CFIDS seems to be almost back to its previous state. Of course, I'd rather it be gone altogether, but I'm glad I can function again. I'm also sleeping better, and my memory has improved. I wonder how much of my memory improvement has to do with sleeping better and how much has to do with the epilepsy medications.

I'm doing better psychologically, too. I've had some time to process all that's happened and adjust to my new normal. The improvement in my health and improved sleep have undoubtedly helped my mood. I'm physically weaker than I was before, and I'm still dealing with some unpleasant side effects from my new meds, but being back at work among people I like has done wonders for my mood. It's also given me back a sense of normalcy.

This post has taken a lot out of me, so that's all for now.

Happy Valentine's Day!