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! 

It Might Not Be Epilepsy?!

I might not have epilepsy.

Everything has happened so fast that I'm still processing the recent events.

I saw the epilepsy specialist on Monday. My mom came into town to accompany me since my husband was unavailable that day. After reviewing all the medical records I had sent over to the epilepsy center (including previous EEG's), interviewing me, and giving me a neurological exam, the doctor said that he did not think I had epilepsy.

What?! I looked at the neurologist in shock.

He said, "This is good news! You don't want to have epilepsy." I suppose he was expecting me to cheer or at least smile.

I couldn't smile. All I could think about was how the past year of my life was one of the worst of my life. Ever since starting epilepsy medications, I have felt sicker than ever. I nearly died in May from one of the medications. I'm losing my hair, my entire body is weaker than ever, my memory is worse than ever, and I have all sorts of problems I never had before.

All of the suffering and all of the pain over the last eleven months have been for nothing. I suffered through horrific side effects and put my body through tremendous stress for nothing. I almost died for nothing.

I wanted to cry.

I was suddenly angry at my previous neurologist. I asked the epilepsy specialist how I could have been so wrongly misdiagnosed. How could this have happened? How could my previous neurologist have been so wrong? Of course, the epilepsy specialist couldn't really give me an answer. I said that my old neurologist needed to know that he was wrong and asked if the specialist could send over a copy of his findings.

I am still going to have another EEG that the epilepsy specialist is going to review just to be sure. The EEG results that were sent over by my previous neurologist's office were a bit difficult to read because they were printed out on paper and condensed, rather than sent on a CD or DVD which would have made the spikes and waves easier to interpret.

At this point, I'm not sure what to think or how to feel. I think I am mostly in shock. I don't really feel anything.

I'm not going to get my hopes up just yet. I'm too afraid to believe that I don't have epilepsy just in case I actually do. At the same time, if I don't have epilepsy, I'm back at square one -- trying to figure out what to do to feel healthy. For a while, I had hoped that the epilepsy medications would "fix" everything that was wrong with me. Unfortunately, the medications seem to have done the very opposite and hurt me instead.

On the upside, I am now tapering off one of my epilepsy medications, Keppra. The epilepsy specialist believes that it is the source of many of my recent problems. I am hoping that the hair loss, extreme weakness, high cortisol levels, high triglycerides, and even some of my neurological issues will improve with time.

There is so much more the epilepsy specialist said, but I am too tired and overwhelmed to write about it.

Getting Better is Exhausting

Ugh. Sorry about the long silence. I've had all sorts of problems with new medications combined with horrible insomnia, so I have not felt up to writing. This post will be written in spurts, so there might be some repetition or jumping around of ideas.

My progress is so slow that on a day-to-day basis I feel like I'm not making any progress. When I compare myself now to how I was before the lumbar puncture and blood patch (when I was working full time), I'm still in pretty bad shape.

However, when I compare myself now to how I was immediately after the research study (when I was REALLY bad off), I can tell I have made some improvements. Here are some improvements:

• I am able to shower more often. When I first got back, I was so sick and weak that it would take every ounce of energy to shower that I only did it twice a week at the most (sorry if that's too much info).
• I can get in and out of bed without help, and I no longer spend all day in bed. Initially, there were times that I needed my husband to help me sit up in bed so that I could eat a meal or take pills. I now have more variety and spice in my life and spend time sitting or lying on the couch instead of lying in the bed!
• I can drive myself to all my medical appointments. Driving is still a physical challenge. On days I have an appointment, I rest as much as possible before the appointment and usually end up taking a nap after.
• This week I started doing some light chores like putting dirty dishes in the dishwasher and twice getting the mail (we live in an apartment complex, so our mailbox is a short walk from our place). These are big accomplishments!
• My headaches have decreased, probably as a result of some of the medications, which unfortunately I have now stopped due to side effects (see below).

Unfortunately, I still have a way to go. I'm still running low grade fevers. There have been a couple of occasions that my temperature was a normal 98.6 or a close 98.8 (and of course I would get excited), but then by the next day it would be up again.

I'm still exhausted and not sleeping well, and I'm sleeping a lot. I'm still having trouble breathing. My throat hurts on and off, and I've got a blister on what remains of my left tonsil. My lymph nodes still hurt, and my memory is a mess. I feel like the forgetful fish Dory in the movie Finding Nemo. It's funny, but not.

So much has happened since my last post that this post would become a book if I tried to explain everything, so I'll just try to cover the main points (not necessarily in chronological order):

• I was having difficulty breathing (see symptoms from last post) and thought it was from my asthma, so I went to my asthma specialist to get checked out. My lungs are completely clear. My breathing symptoms are not from asthma. I was given a name for my symptom: "air hunger."
• Because of worsening insomnia combined with the sense of air hunger that started around the time I started my new medications, the neurologist instructed me to stop the zonisamide (see last post) and diazepam (a.k.a. Valium) which was prescribed in place of the Soma (muscle relaxant) which was supposed to help my tension headaches. I am no longer on any medications for my tension headaches or migraines.
• It is interesting that both the Soma and Valium increased my insomnia symptoms to an extreme degree. Both medications usually cause drowsiness. The Soma kept me up 36 hours (see previous post). The Valium did not make me sleepy, and it kept me in a very light sleep when I did fall asleep. I would wake up ever couple of hours. I still say I'm the queen of less-common side effects.
• The neurologist has temporarily given up trying to treat my headaches, saying that we need to first address my insomnia. Good call. I'm exhausted. He has prescribed Lunesta for sleep, which is supposed to help people fall asleep and stay asleep. I've taken it two nights, and it does seem to help me fall asleep (though I have discovered that it takes nearly two hours before it starts to work); however, I still find myself waking up during the night.
• In the past, I've used melatonin, valerian, and/or benedryl to help with sleep; however, my sleep problems have gotten out of control since the lumbar puncture. I'm willing to try pretty much anything. It's funny the Soma and Valium, while not specifically prescribed for my insomnia, were so unhelpful.
• I have started going to physical therapy for my upper back and neck with the hope that it might help with my headaches. I've had one treatment, so I don't feel any difference yet...but I'm hopeful.
• I have started seeing a Cognitive Behavioral Therapist to see if she could give me any useful techniques for dealing with my newly worsened level of CFS. I've only been to her once, and I like her so far. She knows I'm not depressed and that the CFS is not a psychological disorder. I feel it significant to point out that she herself has Fibromyalgia.
• I have started light therapy. I bought a travel-sized light therapy light from Amazon and am using it for 30 to 60 minutes each day when I get up. I'm hoping it will help "reset" my internal clock which is obviously not functioning properly.
• I purchased a cheap eye mask to help block out all light when I go to bed, and I got a "sleep machine" that creates white noise to help mask external sounds that can be disruptive to sleep.
• In addition to the light therapy, eye mask, and sleep machine, I try to practice good sleep hygiene by going to bed and waking up at the same time every day (I set my alarm clock), but doing so has been a fruitless exercise thus far. I'm hoping if I keep doing what I'm doing along with trying to find a sleep medication that actually works, things will improve in time.
• I am trying to start the "olympic exercise regime" that the Georgetown doc recommended to me. He suggested going for short walks. In the first week, I would go for a one minute walk every day. In the second week, I would go for a two minute walk every day. In the third week, a three minute walk every day, and so on. Up to thirty minutes. If I have trouble, I could repeat a week. That is, if I'm ok with three minutes but not four, then I would stick with three minute walks for another week.

When the Georgetown doctor told me to stay out of work until January and my regular doctor agreed, I decided I would do everything my doctors suggested...even if I was skeptical...because I really want to get healthy. I also started doing my own research. The sleep machine, eye mask, and light therapy were my own ideas, but pretty much everything else has been suggested by them.

I am not a big fan of prescription medications because I've been on so many over my lifetime. I rather prefer natural remedies; however, all the supplements I'm on are obviously not enough at this point. I have an appointment with my regular doctor on Monday, and I want to talk to her about possibly taking antiviral medication.

I've read that some CFS patients have had some success with long-term antiviral medications. Multiple blood tests have shown elevated levels of EBV in my system (and occasionally elevated HHV6). Most of my symptoms are very viral-like, as well, so I'm hoping she'll consider a prescription. If not, I'll keep plugging away. There are also a few more supplements I want to ask her about.

Oh, and my Short Term Disability has still NOT been approved. It's still pending, so that's better than being denied. I started the process on November 20. I'll post an update if/when anything happens.

I'm too tired to write any more, so this will have to do.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, insomnia, mild headache, low grade fever 99.3 (99.7 yesterday), blister in throat, sore lymph nodes under arms and in neck, tired muscles, poor memory and thinking problems, air hunger, area of blood patch has still not healed and is itchy.

Mood (10 is best): 6
Energy (10 is best): 1
Physical Discomfort (10 is worst): 5

P.S. Happy Hanukkah to those that celebrate!

Sick & Georgetown Update

Sorry about the longer than expected absence. I think I'm having a delayed crash from my trip to the Midwest (see Back from the Midwestern US for background). I've been sick with a fever all weekend. I've slept about 16 hours per day (including naps) since Friday and haven't felt up to blogging (or really doing anything).

Ugh. I'm sick of being sick.

I'm still not feeling especially great right now, but I felt the need to post my promised update about Georgetown (see Georgetown CFS Study and Hoping to be a Human Guinea Pig for background info).

The Georgetown research coordinator called me a little over a week ago to let me know that they wanted to schedule me for October. He asked me when I was not available, so I gave him those dates. He then told me he'd get back to me soon with dates they could schedule me. I then asked if they still needed more healthy volunteers, and he answer was a resounding yes. I promised that I would get the word out.

I was really excited after this phone call, thinking that this was actually going to happen for me.

I still haven't heard back...and October is just a few days away. This situation has been dragging on since August 1. I'm suspecting (and a few others have mentioned this to me as well) that they need many more healthy volunteers before they can bring in more CFIDS patients. Unfortunately, it seems that not many healthy people are willing to undergo a voluntary lumbar puncture. Go figure.

Another hitch in the plan is that there is a chance that I may not be able to get the time off from work to participate in the study. This possibility is upsetting to me. Of course, I hope everything works out because it would mean a lot for me to be a part of significant CFS research. I'm not exactly sure why participating in this study is so important to me. It just is.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, headache, eczema flare up on right ankle, low-grade fever.

Mood (10 is best): 5
Energy (10 is best): 2 (after sleeping all day), 1 (most of this weekend)
Physical Discomfort (10 is worst): 4

Back at Work but Still Under the Weather

This is my second day back at work this week, and I'm on my lunch break. My body is still working very hard to fight off whatever it is I've had for the past several days. I feel yucky and achy, and I really don't feel like interacting with humans because of the amount of energy it takes. Though, oddly, I'm in a pretty good mood.

I'm definitely a bit better than earlier this week, but the lymph nodes in my neck are really bothering me. I'm pretty sure I'm running a fever. At least my throat doesn't hurt like it did before.

Why am I at work, you ask? Well, I can't afford to use any more sick leave unless absolutely necessary. Thank goodness my workday today mostly involves paperwork at my desk, so there's not too much movement or interaction that I have to do.

What I'd really like to do right now is crawl under my desk and take a nap, but I think people might notice. I just wish I had my awesome, new Disneyland throw blanket. It's really comfy.

Just for fun:
If you think kittens can be cute or funny, check out this link.

Sick at Home

It's official. I'm sick.

I suppose one could argue that I'm always sick, but today it's acute. Last night I developed a mild fever and terrible headache along with my sore throat.

It really hurts to swallow, and my entire body is achy. Moving takes a lot of effort. I don't have a stuffy nose or any other cold-like symptoms, so I need to get a throat culture for strep. I am prone to strep infections.

I tried to get an appointment with my regular doctor this morning, but she's out sick. Unfortunate coincidence. I then called my allergy and asthma doctor to see if her office did throat cultures. Nope.

I am now trying to find a near-by walk-in clinic that does throat cultures. That's why I'm online. If I didn't have to look for a clinic, I would not have dragged myself upstairs to the computer.

Found a clinic. It's one of those new walk-in clinics attached to a major store (e.g., CVS, HEB, Walgreens, etc.). Here I go!