Waiting for Biopsy Results

I hate waiting...

...and waiting...

...and waiting...

for medical test results. 

It's been three weeks since my biopsy, and I'm still waiting for results.  In once sense I feel as though time has flown by because it's already been three weeks since the surgery.  On the other hand, I feel as though it's taking forever to get back my results. 

I'm happy to report that I can use my arm 99% normally now (hooray!).  The bruising is gone, and I no longer have to keep the biopsy site covered with gauze.  I am still not sure what the surgery site really looks like because the surgical tape is still stuck to the site, but it is slowly coming off on its own.  I suspect it will come off completely in the next few days. 

This is the most invasive medical test I've had, and I feel it's one of the most important because it could give me answers.  Of course, the results may just leave me with more questions. 

I guess I'll just have to keep waiting for now. 

-------------------------------

UPDATE 3/13/12, 10:20 PM

A recent visitor to my blog posed some good questions.  My answer started to get so long, I decided to post my answer on my blog instead of the comments box. 

Do you mind saying what symptoms you had that led to you getting these tests? I have some muscle issues and was just wondering. Also I read with the biopsy there are two ways to do it, fresh and frozen. Do you know which you had?

I'm sorry you're having muscle issues.  Unfortunately, I don't know whether my biopsy was fresh or frozen.  I suppose I can find out at some point.  I'll try to remember to ask my doctor when I get the results. 

I have a direct answer and a more roundabout answer to your question about symptoms.  The more direct answer is that I have weakness in my arms and legs that showed up in a neurological exam, and a subsequent EMG showed abnormal muscle activity that indicated some sort of myopathy.  As a result of the weakness combined with the EMG results, the doctor decided a biopsy was necessary.  I should probably mention that all my blood work for muscle disease was normal. 

I'm thinking you might want specific examples of my symptoms...  I have some trouble going up stairs.  After the first few steps, my legs start to burn from the exertion.  By the time I get to the top of the stairs, I'm out of breath and my heart is racing as if I've just run a marathon.  I can usually make it all the way up the stairs without stopping, but it takes a lot of energy. 

Things that are not heavy for most people often feel heavy to me.  Opening the outer door of an office building or pouring a drink from a gallon jug can be a challenge.  My hands don't seem to have the strength to open jars or bottles very easily (and sometimes it's impossible for me to open things).  It is too difficult for me to hold a hair dryer over my head until my hair is dry (my arms start to burn if I try), so instead I hang upside-down to dry my hair with the dryer.  Letting my arms hang with the dryer uses less strength. 

The more roundabout answer is that I always assumed my muscle weakness was from ME/CFS, so I never even considered seeing a neurologist to be screened for neuromuscular disease.  I got to my current neurologist in a roundabout way.  I started loosing my hair several months ago, so I made an appointment with a dermatologist.  The dermatologist tested me for various things including ANA.  I ended up having a positive result, which can sometimes indicate lupus. 

This result lead me to a rheumatologist for confirmation that I did not have lupus.  The rheumatologist also did a neurological exam and noticed I had unusual weakness in my legs and asked if I had ever seen a neurologist for it.  I told him I had not.  I then searched for a neurologist that specialized in neuromuscular disease, which is how I found my current doctor.  She noticed that my arms had unusual weakness during her neurological exam, so she ordered an EMG.  My EMG was abnormal, so she decided to order a biopsy. 

Please let me know if you have any additional questions.  Good luck in finding answers to your muscle issues. 

Have I Been Overdoing It? & I Hate Bug Bites

Have I Been Overdoing It?

To answer my own question. Yes. All the amazing energy I've had for the past few weeks seems to be waning a bit. It's my fault, though. As my energy increased, I took to doing more chores and food preparation. I even went grocery shopping by myself a couple of times. (For people with ME/CFS, grocery shopping can be like running a marathon -- exhausting.)

I think I got reckless in my activity level because I hadn't felt that good in many years. A little part of me (ok, a big part) also thought I might be healthy enough not to be susceptible to my nemesis, Postexertional Malaise. Unfortunately, I was wrong.

For the past few days I've been plagued by my other adversaries, Low-Grade Fever, Sore Throat, Cold Sores, and Constant Fatigue. Boo! On the upside, this setback does not feel nearly as bad as my typical crashes.

While I'm not thrilled about my enemies revealing themselves all at once over the past few days, I'm glad they didn't put me out of commission completely. This incident serves as an important reminder to me that I still have to be careful. I'm not Superwoman, after all.

I Hate Bug Bites

To add insult to injury, I woke up yesterday (or was it the day before...) with bug bites on different parts of my body (head, ear, wrist, leg, ankle). I have no idea what kind of bug bites they are, but they are so itchy that they woke me up the night I got them and kept me up much of last night.

I am paranoid that we have fleas or bed bugs, though we have not been able to find any evidence of either type of infestation. I've been surfing the web looking at detection and extermination options for both types of bugs. Some of the photos are disgusting, and the horror stories will make you think you've got bugs in every crevice of your home.

We washed all the bed sheets, blankets, mattress cover, and allergy covers in hot water. After inspecting our mattress, we wiped down the bed frame with damp paper towels looking for evidence of bed bugs (none found). We then vacuumed the room just in case there were any bugs or eggs hanging around the floor. Luckily, we don't have carpet, so it's harder for bugs to hide from us.

My husband has not gotten any bites and I haven't gotten any new ones, so I'm hoping the bites were an isolated incident. Cross your fingers for us!

Part III: Physical Therapy for Vulvodynia - 1st Visit

Disclaimer/Warning: This post contains a frank discussion about specific female organs and sexual issues that some people may find too graphic, offensive, embarrassing, or personal. If you know me personally, you may feel awkward reading about these issues. Rest assured that if you are not embarrassed, I am not embarrassed. If you have any questions, feel free to ask.

As I mentioned in  Part II: Vulvodynia Treatment Options, I found the idea of physical therapy for my vagina quite odd. I'd heard of going to physical therapy for nearly every other part of the body, but for a vagina? Seriously?!

My wonderful gynecologist talked about physical therapy in a very matter-of-fact way. She explained that what I had was a medical issue that needed to be resolve in a medical way. Though an obvious explanation, it helped me to hear it come from a doctor because I'd spent years emotionally beating myself up over this. The doctor then went on to tell me that she had another patient who had not been able to have sex with her husband of 10 years whom she'd referred to the physical therapy place who was now pregnant.

I started to have a little hope.

I scheduled an appointment for my physical therapy with the pelvic health center my doctor recommended. I had no idea what to expect, but my imagination ran wild. I imagined everything from medieval torture devices to kinky sex toys. Fortunately, my treatment turned out to be something closer to the middle. Their entire practice is devoted to helping women improve or entirely overcome various types of pelvic issues -- from incontinence to vulvodynia, and they treat every patient with understanding and dignity.

My first visit involved a long medical history form and interview with the center's director. She explained the center's holistic approach to therapy. She said that they see many women like me and are usually very successful in treating my particular condition. The director mentioned the same patient my gynecologist had told me about before -- the women who had not been able to have sex with her husband of 10 years who was now pregnant (the woman, not the husband).

I felt encouraged.

Many women that come to the practice are out of balance in some way -- whether nutritionally, hormonally, physically, psychologically, or all of the above -- and they like patients to address all their issues. Interestingly, no one in the practice was surprised to see my long list of health problems. I can only assume that quite a few people with multiple chronic illnesses are patients here.

After I finished meeting with the director, I met with one of the physical therapists for my initial evaluation. I felt a lot of apprehension at this point because I knew this was the time I would have to drop my pants. Evaluation involved (painfully) inserting a narrow probe that would measure my pelvic floor muscle activity and sticking what looked like EKG electrodes to my stomach to measure my abdominal muscles.

Turned out that I was constantly contracting my pelvic floor muscles, which meant nothing was getting in there very easily. The physical therapist was pretty shocked at how strongly my muscles were contracted; she said it was one of the worst she'd seen. She also said they'd been able to help women with as serious a problem as I had.

I started to have a little more hope.

After the initial measurements were done, the therapist recommended I do four things:

1. Purchase a particular relaxation CD. The particular CD's they recommend help women relax every part of their bodies, including pelvic floor muscles.
2. Purchase a particular set of medical vaginal dilators. The kind the center recommends are primarily used in hospitals for women who have had cervical cancer.
3. Make an appointment with a particular nutritionist with the hope that I would adopt a diet that could help my prediabetes and IBS symptoms
4. Make an appointment with a particular psychologist to deal with all the emotional issues surrounding my health.

At first I was mildly offended they thought I needed a nutritionist and psychologist because I thought I was already a pretty healthy eater and was dealing pretty well with my issues, thank you very much. However, I had already decided I was going to follow their program because of all their experience, so I made the appointments. I'm glad I did. I'll talk about the nutritionist and psychologist in a future post.

I knew that going through this process would be a financial investment (i.e., expensive), but my husband and I decided that we would go for it and would put everything on our credit card if we had to. Amazingly, my medical insurance covers most of the costs of my treatment.

Well, it turns out that explaining everything has taken much longer than I anticipated, so I will have to do a Part IV (and maybe Part V) to talk about subsequent appointments. Until then, think good thoughts!

No More Cheese or Yogurt!

I know I promised to talk about my vulvodynia treatment in this post, but something came up that I wanted to write about. As I mentioned earlier this week, I'm working on cutting not only gluten from my diet but also milk products because of a possible casein (milk protein) intolerance. I already know that I have lactose (milk sugar) intolerance.

For over a month, the only milk products I had were what little milk product might be in fake butter, certain potato chips (sour cream and onion flavor), and salad dressings (usually Caesar). It's important to note that I did not have the above products very often.

Well, the last couple of days I had some serious milk products...and I'm paying the price.

Two nights ago, my husband and I had a lovely homemade dinner of tilapia, asparagus, and baked potato. In the past we have substituted plain yogurt for sour cream because we thought yogurt to be healthier than sour cream. That night was no different. We put plain yogurt on our potatoes. A couple hours after dinner, I had stomach pains and diarrhea. However, I did not connect the yogurt to the stomach problems until the next evening.

Last night we went to a Mexican restaurant for dinner and ordered queso (cheese dip) for our chips. Big mistake. I felt fine all through dinner, but I started to feel nauseated on the drive home. By the time we got home (about two hours after having the queso), my stomach was bothering me even more. Sure enough. Diarrhea. About 10 minutes later, I vomited from the nausea.

If I had not had a problem the night before, I might have blamed food poisoning on my stomach issue after the Mexican restaurant. However, because of the timing of things, I was pretty convinced that my problem was yogurt and cheese. So convinced, in fact, that I ate my leftovers (minus the cheese) for lunch about six hours ago and feel fine.

New Note (5/1/11): I found out today that some restaurants use queso that includes gluten. No wonder I had such a violent reaction. My body was reacting to gluten, casein, and lactose!

In addition to the gastrointestinal issues last night and the night before, my eczema has flared up quite a bit. I even developed a new area of rash just under my right ear. Hmmm...sounds like an allergic reaction to me.

I can't remember if I included links to the differences between lactose intolerance and casein intolerance in my gluten post, but eczema or skin rashes are common symptoms of casein intolerance. Diarrhea can be a symptom of both lactose and casein intolerance.

I am officially cutting out cheese and yogurt now. Before, I was generally avoiding it but not actively cutting it out of my diet. I don't know if that last sentence made any sense, but I'm leaving it in anyway! :)

Part II: Vulvodynia Treatment Options

Disclaimer/Warning: This post contains a frank discussion about specific female organs and sexual issues that some people may find too graphic, offensive, embarrassing, or personal. If you know me personally, you may feel awkward reading about these issues. Rest assured that if you are not embarrassed, I am not embarrassed. If you have any questions, feel free to ask.

For the sake of simplicity, I will often refer to my pain problems as vulvodynia rather than listing the exact problem.

As I mentioned in my last post, I was diagnosed a little over a year ago with vulvodynia. I told my gynecologist that I wanted to be able to enjoy sex with my husband and have children sooner than later (I'm in my 30's). My gynecologist suggested three options for my problem:

1. Lidocaine to numb the pain with the hope that I would be able to tolerate sex.
2. Physical therapy.
3. Surgery to remove the inflamed areas.

I immediately ruled out surgery because (a) the idea of any kind of surgery to cut out parts of my vagina sounded horrible and (b) my body has a habit of not healing very well anyway. I thought physical therapy seemed weird, so I nixed that idea, too.

I decided to go with the simplest plan -- lidocaine.

I tried the lidocaine a few times, but it didn't work for me. It seemed to irritate my already sensitive skin, and the vaginismus (involuntary muscle spasm) was just too strong.

Around the time I got diagnosed with vulvodynia, I was MISdiagnosed with epilepsy. Being able to enjoy sex with my husband suddenly became a low priority again compared to dealing with my new, more serious diagnosis. As you may already know, the epilepsy fiasco lasted for nearly a year before learning that I don't actually have epilepsy. If you are new to my blog, you can read my entries from 2010 to learn more about the misdiagnosis.

Once the epilepsy issue was behind me, I started to focus on other issues that had taken a backseat. A few months ago, I saw my gynecologist for my annual exam and told her that the lidocaine was not helpful. She suggested physical therapy as my next option and surgery as a last resort. I decided to go with physical therapy.

Even though going to physical therapy to fix my vagina sounded ridiculous, I had reached the point that I was willing to try it. My husband and I want children, and I'd like to try the old fashioned way before using any other (often expensive) methods to get pregnant. Of course, our having children also depends on my getting healthy enough to care for any, but I'm trying to be an optimist.

My next post will discuss what physical therapy for vulvodynia involves and how I am doing now.

Part I: The Pains of Vulvodynia

Disclaimer/Warning: This post contains a frank discussion about specific female organs and sexual issues that some people may find too graphic, offensive, embarrassing, or personal. If you know me personally, you may feel awkward reading about these issues. Rest assured that if you are not embarrassed, I am not embarrassed. If you have any questions, feel free to ask.

Another problem that many women with ME/CFS have is vulvodynia -- or chronic vulvar pain (i.e., pain in the female nether regions). Not surprisingly, I have this condition.

First, some definitions from MedlinePlus, Mayo Clinic, and the University of Iowa. I picked these particular websites and definitions because they made things easy to understand. The terms I am defining are conditions I have, according to my gynecologist and the pelvic health center I visit for treatment.

Vulvodynia (vŭl′vō-din′ē-ă): chronic vulvar pain.

Vaginismus (ˌvædʒɪˈnɪzməs, -ˈnɪsməs): an involuntary spasm of the muscles surrounding the vagina. The spasms close the vagina.

Dyspareunia (ˌdis-pə-ˈrü-nē-ə, -nyə): painful intercourse.

Vulvar Vestibulitis (ves-tib′yū-lī′tis): a condition which causes redness and pain of the vestibule; an inflammation of this skin and the mucous secreting glands found in the skin.

I was diagnosed with all of these conditions by my gynecologist a little over a year ago, but it is only recently that I decided to really focus on these issues.

In hindsight, I have had vulvodynia and vaginismus as long as I can remember. As a teen, I could not use tampons because of the pain, and my annual gynecological exams have always been excruciating. I have had dyspareunia since becoming sexually active, and I only learned of my vulvar vestibulitis when my gynecologist observed inflammation and redness of unknown origin.

My husband and I have been married for almost six years, but we have pretty much not been able to have sex successfully. (My definition of successful sex would be sex that I enjoy with full penetration without any pain.)

This issue is chock-full of spin-off issues. As you might imagine, the emotional toll is quite immense, as self-esteem, intimacy, and relationship issues flow abundantly. Of course, the physical toll is not a piece of cake either. The pain could be so terrible that it felt as though someone was pouring boiling water into my vagina while stabbing me with a serrated knife in the same place. I apologize for the graphic description, but I feel it is important for me to educate people who do not understand how debilitating this condition can be.

One of the main reasons I went so long without addressing my pain problems was because I was wrapped up with the rest of my health. In the grand scheme of things, being able to have sex seemed lower on the list compared to all my other chronic health problems that reared their ugly heads on a daily basis.

The other reason things went on so long is because my previous gynecologist did not believe I had a real problem. I told her of my issues on every visit, but she just kept telling me to "go more slowly," "use more lubrication," and "stretch it out." She blamed my problems on my lack of sexual experience. I believed her, so I kept making an effort. Eventually, the pain became excruciating. Little did I know that forcing it made things worse. 

I have to take a moment to mention what a wonderful husband I have. I suspect that there are not many young marriages that would survive chronic illness and little sex.

Fortunately for me, my previous gynecologist retired, and I got one who is very knowledgeable about pelvic pain. When I told my new gynecologist about my problems just over a year ago, she immediately diagnosed me and assured me that it was not my fault. She told me that I had a real medical condition and that it was not a matter of simply using more lubrication or "stretching it out." Imagine my relief to know it wasn't all in my head. (This situation reminded me of my CFS diagnosis.)

In my next post, I'll discuss the treatment options my gynecologist offered to me.

PCOS and Pre-Diabetes

After more than one blood test result came back with high cortisol levels months after I'd stopped taking steroids (to treat my allergic reaction to an epilepsy medication), I decided to see an endocrinologist. I still had some Cushing's syndrome-like symptoms -- particularly excessive weight gain in my stomach area -- so I wanted to find out if I had some sort of underlying endocrine problem.

I saw an endocrinologist in January. She took my meidcal history and ordered a full blood work-up and 24 hour urine collection. I was surprised by the results.

My cortisol levels were completely normal. However, based on my Hemoglobin A1C result of 6.4 (standard range is 4.0 - 5.6; higher than 6.5 means diabetes), the endocrinologist diagnosed me with prediabetes. She said is was a result of my Polycystic Ovary Syndrome. Additionally, my maternal grandmother developed Type 2 diabetes, so there is also a genetic component at play.

The reason this particular diagnosis took me by surprise is because I've had my glucose levels tested before, but the levels have always been normal (in the 80's).

It is well documented that prednisone raises blood sugar levels. I believe that the high levels of steroids I took for so long triggered my insulin resistence. The doctor put me on metformin, a diabetes medication which is also commonly prescribed for people with PCOS.

About a month after I started taking metformin, I had not lost any weight (something I was hoping for). I decided I needed to take more "drastic" actions, so I cut out sugar from my diet. I stopped eating sweetened food and drinks -- that is, desserts, sweetened snacks, sodas, and other drinks with sugar added (like sport drinks).

I really wanted to lose the extra weight I had gained over the past year. The first couple of weeks were hard, but I'm pretty much used to it now. I think what made the diet easier to stick with was that I did not cut out any other foods.

What's amazing is that just by cutting out all sugar products, I lost 4 pounds in the first week.

Since then, I've lost another 6 pounds (that makes a total of 10 pounds so far!). However, I've made a more serious diet change. I'll talk about my new extreme diet in a future post.

Note added at 3:15pm on March 14: It's interesting how many women with ME/CFS have PCOS or other female issues. I wonder what the connection is...

A Recap of 2010

So much has happened in 2011 that I wish I'd been blogging this whole time. Better late than never, I suppose!

First, a recap.

If you read my blog last year, you may remember that I started the year on short term disability as a result of complications from a lumbar puncture. While I was on short term disability, I was MISdiagnosed with epilepsy and was put on a series of anticonvulsant drugs that did a number on my body.

In addition to weight gain, hair loss, extreme weakness, tremors, mood changes, headaches, nausea, dizziness, and other truly unpleasant symptoms, in May I experienced anaphylaxis due to one of the medications and ended up being rushed by ambulance to an emergency room. I thought I might die. I was administered high doses of epinephrine, antihistamines, and steroids. That event began my second period of short term disability in 2010.

Because of the insanely high amounts of steroids that had to be pumped into my system to counteract my body's immune system reaction, I suffered from Cushing's syndrome symptoms. I suffered from high cortisol levels and had awful weight gain particularly around my middle (I looked a few months pregnant), face, back, neck, and clavicle area. My body was a mess, yet I was put on another anticonvulsant for my MISdiagnosed epilepsy.

I spent much of the rest of 2010 struggling with my Cushing's syndrome symptoms while on anticonvulsants. I became so weak that I felt I'd had a major setback in my ME/CFS. My life was miserable. Due to my worsening health, I was forced to change jobs because my job at the time was becoming too physically demanding.

I'm sure I'm leaving things out, but I can honestly say that 2010 was one of my most challenging years ever.

I don't mean to end this post on such a downer, but I wanted to recap before I wrote about what has happened since. I will post again this week.

AAAAAAARGH, I NEED SLEEP!!!

My sleep-wake pattern is so disturbed at this point that I'm getting a little loopy and am craving even just one night of good sleep. This problem has gone on more than two weeks. I'm sure this lack of good sleep is NOT helping my health. I'm running a fever of 100.0 today.

The Lunesta (which I took for a few days) did not work for me. It helped me fall asleep, but I kept waking up throughout the night. After the Lunesta I was prescribed a high dose (30 mg) of Restoril, which didn't help after four nights of taking it. It did not help me fall asleep, and I ended up waking up "wide awake" around 4:30 or 5:00am after having fallen asleep around midnight.

If you're keeping track, so far the following medications have NOT helped me sleep:

• Trazodone (caused nasal passages to close)
• Soma, prescribed for tension headaches (kept me up for 36 hours!)
• Valium, prescribed for tension headaches (made me wake up every one to two hours)
• Lunesta (did not help me stay asleep)
• Restoril (did not help me fall or stay asleep)

The newest sleep med I'm going to try is Ambien CR. My first dose is tonight.

I've had trouble sleeping in the past, but my sleep patterns got worse after the lumbar puncture and MUCH WORSE after the Soma incident. Compared to now, my past insomnia was nothing. I used to be able to take over the counter supplements or meds to help me sleep. However, my brain chemicals and internal clock are so crazy now that nothing (including natural remedies, good sleep hygiene, and prescription meds) so far has worked.

In other news...

• I received a letter yesterday that let me know my Short Term Disability claim was approved through November 30... but they now need all my medical records including all test results from every treating physician from November 11 through present (before they just needed info from one doctor).
• I went to my regular doctor on Monday, and she reiterated that I should continue to stay out of work at least until January.
• My doc also prescribed seven days of the antiviral medicationValcyte for me because the blister on my throat appeared viral and not bacterial. She also ordered new EBV and HHV-6 tests to see if my levels are high enough for me to take Valcyte for a longer period. There is some research that shows some people with CFIDS improve on Valcyte.
• Turns out the area of my blood patch was infected, which is why it hadn't healed after over a month. My doc prescribed a topical antibiotic, and it has already helped a great deal.
• I will be seeing a pulmonary specialist for the "air hunger" I recently started experiencing; however, I've read that this symptom is not uncommon in people with CFIDS, so I doubt the doctor will find anything wrong with my lungs. My breathing tests at the place that treats my asthma already confirmed my lungs are clear.
• The Cognitive Behavioral Therapist told me she didn't think I needed regular counseling at this point because I am not currently depressed or experiencing excessive anxiety about being chronically ill and seem to have developed good coping skills. I've got two more appointments with her, then we'll schedule on an "as needed" basis. I have battled depression and not handled my disease very well in the past, so it's good to have outside confirmation that I'm doing ok mentally.
• The physical therapy has helped my upper back pain a bit, but the daily headaches have returned since I stopped all the meds the neurologist prescribed.
• I've kept up with my "olympic training regime" so far, taking daily walks to the mailbox (roundtrip: 3 min).The Georgetown doc told me to walk even on days that I feel awful to work on reprogramming my brain. Starting Monday, I'm going to increase to four minute walks...maybe...or I might just stick with my mailbox walks. I'll see how I feel.

That's all for now.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, insomnia, headache, nausea, low grade fever 100.0, blister in throat, sore lymph nodes under arms and in neck, tired and sore muscles, poor memory and thinking problems, air hunger.

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

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!

Two Steps Back, Baby Steps Forward

I'm feeling quite ill today, but I felt the need to write a post because I feel it's important to document my experiences during this challenging time. I am mentally fatigued, so I will be writing this post in spurts and as thoughts come to mind. I also do not plan on proofreading this post, so please ignore any odd text.

I went to see my regular doctor on Wednesday, and she pretty much echoed everything the Georgetown doctor said and recommended. She also added her own suggestions. I'll write about all the two doctors' recommendations in a future post.

When I said that the other doc recommended that I stay out of work until January, she said "at least until January." Yikes! I hope that's not the case. I already miss my work friends, who are (if the truth be told) my only friends since I don't have a social life. I also enjoy my job. I can watch only so much TV before it gets old.

Like many Americans, my husband Kenny and I celebrated Thanksgiving with his family Wednesday night and much of Thursday (they live about 30 to 45 minutes away by car). I made sure to rest before and during the experience as much as possible, but I still managed to overdo it simply by participating.

After having an almost perfect temperature of 98.8 at the doctor's office on the Wednesday morning before Thanksgiving, my temperature went back up to 99.8 by Friday and is currently running at 100.0 as I write this post. I have not left the house since we got back home on Thursday.

Despite the setback, I do not regret spending time with family. Now that I spend my days at home rather than seeing colleagues and friends at work, contact with other humans (I love my cat, but...) has become more valuable. I also enjoy spending holidays with family.

Tomorrow I have an appointment with a neurologist. We're going to talk about my headaches, which have been increasing in frequency and intensity since the worst headache of my life on November 1. The Georgetown doc recommended that I see a neurologist, and my regular doctor referred me to the one I'm seeing tomorrow.

My only concern is that the drive will be a long one, and I have to drive myself. I'm going to leave extra early so that I can pull over to rest along the way if I need to.

Though I'm still feeling physically awful, I am feeling better mentally. I have come to accept my new situation (I was in denial for a bit); however, I have also made the decision to aggressively work on getting back to my "normal" or even better. I'll write about some of my plans in a later post.

I've also slept better the past two nights. I have been battling some terrible insomnia lately (trouble falling and staying asleep), so it's been a relief to sleep through the night for a change. I give credit to the trazodone prescription the Georgetown doc suggested and my doctor prescribed. The doctor recommended it because it is less addictive than most other sleep medications.

It took a couple of days of taking the medication before it seemed to help, but it seems to be working in part. I still have trouble falling asleep, but they staying asleep problem bothered me more.

Baby steps...

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, low-grade fever of 100.0, generally fevery feeling, headache, nausea, sore lymph nodes under arms.

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

Too Sick to Work

I have fallen into such a major crash that I am no longer able to work at this time.

Since my lumbar puncture and subsequent blood patch (see previous posts regarding the Georgetown CFS study for background info), I have been running constant low-grade fevers and been extraordinarily weak. I have been sleeping 10-12 hours per night and have needed another 3-6 hours worth of naps each day. And I'm still exhausted.

I've been plagued with daily headaches ranging from dull aches to full-on migraines. The lymph nodes in my neck and armpits have recently become more sensitive, and my throat has hurt for the past couple of days.

In short, I'm a physical mess.

I haven't left the house since I flew back home from Washington, DC on Saturday. My wonderful and loving husband, Kenny, has been taking care of me. He has picked up where my parents left off. It is fortunate that he has this week off from work. Kenny has been preparing all my meals and even helps me sit up in bed when I'm feeling extremely weak.

About half of my waking hours are spent lying down. The rest are spent sitting. I'd say I have about three or four good hours a day at most when I can think clearly and feel almost human.

I was at Georgetown University Hospital on Friday (my third visit in a week due to my continued fevers, headaches, and general crappiness), and I asked the doctor (a CFS expert, by the way) if he thought I should take a temporary leave of absence or work part time for a while. He looked me in the eye and said I should not go back to work until January.

I was shocked that he would suggest such a long period of time. At the time I asked the question I knew I was bad off, but I didn't think I was that bad off. This was me in denial. Thank goodness the Georgetown doc saw through my nearly always smiling "I'm ok" exterior to see that I was not ok.

I haven't been this sick in years.

I am now filing for short term disability.

The process is a bit convoluted if you ask me. An outside company will be deciding (a) whether or not to approve my disability claim and (b) if they approve it, they will decide how long I will be allowed to stay out of work. Even though the doctor has recommended I not go back until January, this outside company could say I need to go back immediately.

Despite all the insanity, I do not regret volunteering for the research study. In fact, I told the research team that if they have any future CFS studies, I would be ready and willing to volunteer.

I will be seeing my regular doctor on Wednesday. I have a lot to discuss with her, but I'll save this topic for another post.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, low-grade fever of 99.6, generally fevery feeling, headache, migraine earlier today, nausea.

Mood (10 is best): 4
Energy (10 is best): 1
Physical Discomfort (10 is worst): 5

A Quick Hello

Thank you for all the support in response to my Headache post.

I just wanted to check in to say hello and let everyone know that I am feeling much better than I was on Sunday when I wrote that entry. I have been feeling headachy since then, but I haven't had any new migraines.

I am still processing what happened and will post an update on my next steps when I come up with some.

Today's Activities: travel for work. Today's Most Annoying Symptoms: headache, intermittent nausea, exhaustion, muscle fatigue, sore muscles.

Mood (10 is best): 5
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4

The Worst Headache of My Life

Today I had a bit of a scare. Earlier today I became almost completely incapacitated because of a horrendous migraine headache and considered going to the emergency room.

I still can't move around too much without feeling nauseated or having my head pound.

This morning I flew from Texas to California for work. As usual, I slept for much of the flight. When I woke up as the plane was landing, I had a terrible headache. It got worse every second that passed.

As I stepped off the plane, all I could think about was taking something for the pain. I had one Tylenol and one Motrin left in my bag from my last trip, but I needed something to take it with.

My headache was getting worse so quickly that I didn't think I could make it all the way to baggage claim. I couldn't tolerate light or sound, and I was getting more and more nauseated. Luckily there was a gift shop near the gate, so I went in and purchased a juice and a snack to take my medicine.

I took the medicine immediately. Not wanting to leave my suitcase going around and around the baggage claim unattended, I slowly made my way to the baggage claim area.

As soon as I got my suitcase, I sat in the nearest chair and couldn't move without extreme pain. On a pain scale of 1 to 10 with 10 being extreme pain, I was at a 10. (I have only been at a 10 once before in my life, and that time resulted in a trip to the Emergency Room and a hospital stay.) The headache was so severe that I couldn't think straight.

All I could think about was the pain.

I was hoping the medicine would start working about 30 minutes after I took it. It didn't. I waited another 20 minutes. Still nothing. At that point, I dragged myself to the nearby giftshop and purchased another travel pack of Tylenol and Motrin. I went back to my chair and took one more Tylenol and Motrin. After another 40 minutes, my pain had slightly improved to a 9.

Though I've had migraines before, I've never had one this severe. Every sound felt like a dozen knives stabbing me. I had to cover my ears a few times as noisy people went by. I kept my eyes closed with sunglass on because the light was painful as well. I felt as if my head would explode. I was so out of it that at one point I thought the pain might kill me.

Sitting in the same chair at the airport for about an hour and a half with little relief from the extreme pain, I started to feel a little scared and alone. I also really wanted to get to my hotel so that I could lie down on a bed.

I ended up making a deal with myself. I would go to the hotel and lie down. If I continued to feel as bad, I would call an ambulance.

I made my way to the rental car shuttle bus and got on. I was the only passenger. As soon as we started moving, my pain went back up to a 10 and an extreme wave of nausea rolled over me. I knew I was going to vomit, but I couldn't open my mouth to tell the bus driver to stop.

I desperately started digging through my bag and found a small zip lock bag with some of my medicine in it. I dumped out the contents of the zip lock into my bag and proceeded to throw up in the zip lock uncontrollably. As far as I could tell, the bus driver didn't even notice. I sealed the zip lock just as we arrived at the rental car facility. As soon as I got off the bus, I tossed the contents into the nearest trash can.

Coca Cola sometimes helps settle my stomach when I'm nauseated, so I purchased one from the machine that was in the facility. I was obviously not well enough to hop in a car and drive, so I sat down in a chair while I sipped on my drink. The pain was at a 10. I contemplated asking someone to help me get an ambulance. I still couldn't think straight, but I knew I wanted to lie down on the bed in my hotel room.

I don't remember how much time passed before I got the strength to get up to find my rental car, but the pain had improved a bit to an 8. I think it must have been the combination of two Extra Strength Tylenol, two Motrin, and the caffeine in the Coke that was helping my headache.

I finally made it to my car and eventually got to the hotel. I was on the bed as soon as I entered the room.

My incapacitating headache lasted nearly four hours before I started to feel human again. My head still hurts a great deal, but it's not nearly as bad as it was earlier today. I would rate it at about a 6 at this time.

The worst part about all of this is that I am away from home traveling on business alone. I will not be home until Sunday, so I really hope I don't get another severe headache this week. Of course I'll be telling my doctor about this incident as soon as I get the chance.

Today's Activities: travel for work. Today's Most Annoying Symptoms: severe migraine, nausea, exhaustion, muscle fatigue, general weakness.

Mood (10 is best): 5
Energy (10 is best): 2
Physical Discomfort (10 is worst): 10 earlier today, currently 6

Video: XMRV on Good Morning America

I think this interview just happened this morning...

Thanks to Lori for bringing this interview to my attention!

Today's Activities: travel for work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, sore back, mild headache, nausea.

Mood (10 is best): 8
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4

P.S. Happy 1st Birthday to my youngest niece!

An Eventful Week

Wow, I'm still processing all the events of the past week or so. A quick recap:

• XMRV linked to CFIDS/CFS/ME...enough said.
• In addition to my already known deficiencies, I am also deficient in vitamin B2 and coenzyme Q-10.
• I got the flu shot and have made it to the weekend without a major crash (hooray).
• My husband and I were officially accepted into the Georgetown CFS study.

Wow!

A few details/updates:

• I went to see my regular doctor (PCP who treats a lot of CFS and HIV/AIDS patients) on Friday to go over my recent blood tests. She is just as enthusiastic about the XMRV discovery as people with CFIDS. She started talking about antiretrovirals and their possible application, as well as the future diagnostic test for XMRV. I left that appointment feeling so hopeful. It has meant the world to me to have a doctor who believes and understands the impact of CFS.
• My temperature was down to a healthy 98.6 on Thursday, but went back up to 99.0 on Friday. Today it's back down to 98.6. I've been especially exhausted and have felt pretty awful this week, but I've made it to the weekend without a major crash! This was a "good" flu shot year.
• I will be leaving for another business trip tomorrow. This time I'll be gone a week, so I don't know if I'll be posting regularly or not until I get back.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, mild headache, nausea, sore left and right lymph nodes in neck.

Mood (10 is best): 8
Energy (10 is best): 4 (after sleeping 12 hours last night)
Physical Discomfort (10 is worst): 3

P.S. Happy Belated Birthdays to my Mom and Mother-In-Law!

I'm in the Georgetown CFS Study!

I'm in the Georgetown CFS Study, and so is my husband Kenny (he's a healthy control subject)! The study is called "Proteomics of Cerebrospinal Fluid in Chronic Fatigue Syndrome."

I got verbal confirmation last week of our actual study dates (i.e., when they want us to be at the hospital), but I wanted to wait until I received written confirmation before I shouted about it on my blog. The confirmation came in late this afternoon. We'll be flying to Washington, DC in November!

I've been hoping to get into this study since August 1 (see my August 1, August 18, September 10, September 22, and September 27 posts for background).

This post is relatively short because I'm exhausted and brain fog is closing in, but I just had to post this update.

If you're keeping up with my flu shot update, you'll be happy to know that I still haven't had any sort of major crash. I'm exhausted, but still ok.

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, sore right and left lymph nodes in neck, low-grade fever 99.3.

Mood (10 is best): 8
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4

P.S. If you know any healthy people who live near DC or are willing to travel there, please tell them about this research. The research coordinators are in need of more healthy volunteers. Volunteers will be compensated $400. Click on the study's name above for the official research description and contact info.

So Far, No Crash

I'm still feeling pretty awful from my flu shot yesterday, but so far I haven't had a big crash. Of course, I'm trying to take it easy so as not to upset the delicate balance that is my immune system. I still feel achy all over, and the lymph node under my right armpit is starting to hurt; but on the upside, my low-grade fever is slightly lower at 99.0.

Have I mentioned that I rarely take any headache or fever medications?

Even though I get headaches and run low-grade fevers often, I almost never take medications to alleviate the symptoms (I can't even remember the last time I took anything). I think part of the reason is because I have taken so many prescription and over-the-counter medications for so many years, that I'm trying not to add anything else foreign to my body. Maybe it's my form of rebellion.

The exception to my no-medication mantra is when I feel a migraine coming on (which has been a rare occurrence this year). Anyone who has had a migraine will understand!

I'm hoping that this no-major-crash thing sticks around. If I make it to the weekend without a major crash, that means this year's flu shot was a good one for me. I'm feeling hopeful.

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, headache, 99.0 low-grade fever, nausea, mild vertigo, full body aches, painful injection site, mild itching. Update (later evening): diarrhea.

Mood (10 is best): 7
Energy (10 is best): 3
Physical Discomfort (10 is worst): 6

Got the Regular Flu Shot Today

Ugh. I got the regular flu shot today, and my body is not enjoying it. I ache all over, have a low-grade fever, and just had a nasty bout of diarrhea (which I doubt has anything to do with the shot, but it certainly adds to the discomfort). Basically, this is what the beginning of a crash feels like.

I know there is some debate about whether people with CFIDS should get the shot, but both my regular PCP (who treats a lot of patients with CFIDS) and my allergist have always recommend it for me...especially because I have asthma.

I now make it a priority to get the flu shot every year because the two years I decided not to get the shot (ages 23 and 24...or was it 22 and 23?), I caught the full blown flu with 101-104 degree fevers to boot. Having the flu with asthma is awful and scary. With the flu shot, I've managed to avoid any major cases of influenza.

I'm hoping that I don't have a big crash as a result of this injection. Sometimes I bounce back to "normal" quite quickly after the flu shot, sometimes I don't. Only time will tell.

Today's Activities: home (1/2 day), work (1/2 day). Today's Most Annoying Symptoms: exhaustion, muscle fatigue, headache, 99.2 low-grade fever, nausea, full body aches, painful injection site, diarrhea, mild itching.

Mood (10 is best): 7
Energy (10 is best): 3
Physical Discomfort (10 is worst): 7

Video: What Would You Do?

The CFIDS Association of America created this moving video using responses from 1,784 CFS patients to the question: "What would you do if you were completely well tomorrow?"

The CFIDS Association has also created a new website called Solve CFS, as part of a campaign to raise $5 million for research by the end of 2010. If you look closely at the website's banner, you'll see Kenny's and my photos. :)

Today's Activities: traveling for work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, nausea, probable low-grade fever, itching.

Mood (10 is best): 6
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4