The Diagnosis

I'm not sure I totally understand my blood test results. I should get a copy of them so I can ask someone else what is going on. I saw my virologist today. He said that I have all the markers of having been exposed to Epstein Barr virus including markers for current viral infection but not mono specifically. Hence he declared that I have Mono and that it can take months to resolve. He said the longest he ever saw was an entire year. I asked about CFIDS. He said that it wasn't understood and that there is no proven link between EB and CFIDS. I'll have to do another lit search to get specifics but I'm pretty sure he is wrong on that count. While many people with CFIDS have markers for EB, well duh according to CDC 95% of humans have this marker, it is thought that other viruses can trigger CFIDS besides EB. After all, EB is the most common virus known to man and while CFIDS is more common than AIDS or cancer not everyone gets CFIDS. I guess my next question is when does chronic mono become CFIDS? Is there a difference? It looks like treatment is the same. Bed rest. So does the answer really matter?


http://www.cdc.gov/ncidod/diseases/ebv.htm
http://www.cdc.gov/cfs/

Hissy Fits and Crying Jags

How does one deal with all the emotional baggage when one is ill? I do the British thing and keep a stiff upper lip. I figure that there isn't much I can do about things so why bother getting upset over them. This has generally sufficed to keep my spirits up but I must say that I have had tears manage to break this steely facade. Over the past three months I have probably had four crying jags. They are usually brief and prompted by something such as almost collapsing at the supermarket because I dared to go shopping when I should have been home in bed and three months ago I used to skate hard for two hours straight and now I can't even walk around a supermarket for 30 minutes. It is enough to make a girl cry.

Today was a bit different. This is now my second crying jag prompted by my husband's behaviour. He doesn't do well when I'm sick. He gets angry and slams things around like the fridge door and the dinner dishes (thank god I have Corelle wear or there would be collateral damage). When he gets like this he avoids me like I have the plaque. It doesn't matter if I need food, water, comfort or help to get up to go to the bathroom. He is somewhere else in the house out of my walking range and often out of earshot. When I call him on this he tells me I just needed to ask. How can I ask if I'm not physically able to chase him around the house while he is having a hissy fit like a thirteen year old girl? I generally take this very stoically. I just lie on the couch and watch movies or TV.

Then I go off to see one of my practitioners. All of them are in the healing arts because they care about people who are ill and want to help them get better. They have boundless compassion and when I go there I often cry. I wish I could have this at home. I need someone to care for me not go on a rant that the world is out to get them. I understand that he has lost people in his family so have I. I don't think he has dealt with those losses well. His business is also failing which is another blow. Things aren't going right for him. I get this but I am too sick to deal with the rants. Too sick to deal with hissy fits. Too sick to deal with being ignored. I have had days where I haven't had enough to eat or drink from neglect. Some days I feel like I could pass away in my bed and he wouldn't notice for hours or even days. This makes me horribly sad and even more lonely than I already am. So I cry. These are my deepest saddest crys and often the longest.

Often for no reason that I can tell he gets over it and starts behaving like a human being again. Asking how I'm doing. Checking to see if I need anything. Sitting down and keeping me company for ten or fifteen minutes. As Bella says in Twilight "Your mood swings are giving me whiplash."

Internet Flotsam

Boredom and loneliness are the two enemies of the chronically ill. On good days I get to read books. Yeah!! On bad days I either watch movies or cruse the internet. I had a good internet day today. I went on Blogspot to read my usual ice skating blogs and when done hit "next blog" at the top of the page. This leads to some random blog. When done again another blog appears that is in the same "catagory" such as jewelry or bicycle racing. To get out of the catagory pick one of the writers blogs to follow, click and then hit "next blog" again. This leads to another "catagory".

Today I hit the jackpot. I found these two wonderful blogs:
1001 Rules for my unborn son
http://rulesformyunbornson.tumblr.com/
Urban Legends
http://flaneurbanite.blogspot.com/

I actually found a third but crused away from it before saving the URL. Rules for my son is a compilation of pictures, quotes, songs and rules with the occassional video that have been complied by a dad. I adore this blog. It is such a great compendium of common sense and the cool. How can you go wrong with quotes like "Don't let a wishbone grow where a backbone should be."?

Urban Legends is cool for the photography. The guy travels and takes wow photos. I have turned into a viacarious traveler since the onset of my illness. I watch travel shows on TV all the time. One of my favorites combines travle and photography "Travels to the Edge", http://www.travelstotheedge.com/. Urban Legends is the blog version which takes place in cities instead of the wilds of the planet.

Another site on the internet I love is wimp.com. It is just a random collection of short videos. Everything from "talking" cats and dogs to how to iron a shirt. Very cool and you can skip the ones you don't like.

I also love TED. I refer to it as brain candy. Lots of great minds doing 20 minute talks on random subjects such as fractal math and women's rights.

"Thnigs that make you go hum..."

In a Black Mood

I'm in a mood today. I'm annoyed by being tired and dizzy all the time. Since my TB test my nausea and sore throat are back. Thankfully not in full force but just enough to be annoying. It bothered my throat to eat my toast this morning.

I was supposed to see the virologist yesterday but the office staff messed up. They couldn't find me in the computer and kept asking me if I had been there before and if I had filled out their stupid forms. It didn't matter how many times I told them I had been there the prior week and that I did indeed fill out their forms. However, since I didn't exist in the system I must not have been there. I know I get a bit dizzy and confused but I'm not that far gone yet. Turns out they misspelled my name and all my information was in the computer under the wrong name. Since my file had been pulled for the doctor to consult with my regular physician they couldn't find my paper file either. It wasn't until they located this with the misspelled name on it that I suddenly popped into existence and my appointment showed up for the following week. I was there a week early. Ugh. I was looking forward to hearing about my blood test and TB test results. Now I have to wait another week.

I can not express how difficult it is to deal with the medical system while you are ill. I feel like I have to gear up for battle every time I have to see someone. Do I have my insurance cards? My referral? My copay? My records? My test results? My symptom list? The paper tracking my body temp? My list of questions? Have you filled out our forms (that no one reads)? Do you mind waiting for two hours for the doctor to see you? Why no I don't. Its not like I have anything better to do. But I do wish they put cots in the waiting rooms so I could have a nap while waiting. It just sucks the life out of me going to these places.

My mum was here for three weeks to keep me company. It was wonderful just to have her sitting in the same room with me. I would nap and she would read books. My hubby and kid are poor company. Unless I'm spry enough to entertain them they leave me after a few minutes due to boredom and lack of conversation. Both have fairly short attention spans. So I have been finding myself alone this week and it bothers me. Normally I'm fine with being alone but I guess I got used to having my mom around.

It has also been hot which makes me cranky even when I am well. The fact that I am uncomfortably hot and not able to get in my pool is hugely annoying.

So I am in a mood today. I'm alone. After three months I still have no idea what is wrong with me or how long it is going to take to get better. I have a virologist that has a ridiculous number of patients which makes it ridiculously hard to see him. And I have a weird mark at the TB test site. Did I burn my arm with pool chemicals by accident at roughly the same location of the TB test? I'm probably going to have to have another blood test to confirm the TB skin test results which means more waiting. I've been waiting for three months. When are things going to change?????

I'm starting a litany of ills. This is basically so that I can keep track of what is going on with my body. Feel free to skip entirely as it is simply a laundry list of what is bothering me today:
Upper back ache
Tender throat
stiff neck
A barely there headache
Slight nausea
dizzy
tinnitus in right ear
stiff jaw on right side
hot
foul mood
99.1F

In the Begining

I first fell ill May 6, 2010. I caught some virus from my kid. It was a new one. One that neither of us had ever had before. It hit us hard. My kid doesn't usually get sick and it felled him and then myself. Extreamly sore throat, exhaustion. We were both popping asperin and using sore throat spray to numb the pain so we could swallow our own spit. I kept waiting for the cold to come. The stuffy head and runny nose but it never came. We were both well again within four days. My kid returned to school and I returned to work.

Three days later I went ice skating. I had a competition coming up and I needed to get in my practice. I had a great practice Friday although I still felt a bit off. I skated my program through a couple of times and broke a nice sweat. Saturday I felt like I had been hit by a bus. It was like having the flu. I ached every where. I was freezing cold to the point of my teeth chattering even though it was 70F out. My throat was on fire again. I spent the next several days in bed again. My doc put me on antibiotics and I stayed home for the week. I don't know if it was the rest or the pills but I was feeling okay by Friday, which was lucky because my friend had flown in from Seattle for our college reunion. We drove out to the reunion and had a great weekend despite my sore throat. I was eating lozengers like they were candy.

Another week back at work and it was time to skate again. I had gone skating during the week but felt weak and out of it so I did a light workout rather than my usual full tilt workout. But, the competition was looming and I had to start doing run throughs again. Saturday I blessedly found some near empty ice and worked my butt off. Again I worked up a great sweat. I had lost some of my stamina and was wondering if I would regain it prior to the competition. However, Sunday I again woke up feeling like I had the flu. My sore throat and fever was back. This time I was also nauseous and dizzy. I got so cold that I was shaking and my husband put me to bed with four blankets on top of me. Typically I only sleep with one and it was a nice warm 70F out. Me, I couldn't get warm. I stayed home another week. I went back on a second antibiotic which didn't help. I was sleeping 12+ hours a night and takign multiple naps during the day. I couldn't stay awake for more than a few hours at a time. My acupuncturist put me on a diet of double boiled rice. Although that sounds unappatizing I was nausous and had no appitite and was forcing myself to eat. I was loosing weight rapidly so the rice didn't sound like a bad idea.

I stayed home a second week and a third. I was slowly getting my appitite back. I could eat plain foods and trips to the organic market became part of my route home from my acupunture sessions. I was eating mostly fruit and vegetables with boiled eggs, chicken and salmon for my proteins. Rice was it for carbs. Anything else made me nausous.

By the forth week, I had settled into a routine of laying on the couch covered in blankets despite the warm weather watching movies. My brain was too foggy to read. I couldn't seem to hold two thoughts together and movies helped to keep my mind busy. I spread my appointments out over the week. I couldn't handle more than one a day. My sore throat now only flared back up when I got tired. I managed to make a boiled egg and toast breakfast and a simple vegetable soup lunch before retreating to the couch completely drained. I craved ginger so I added ginger ale to my drink list and turned my soup into a Japanese style broth with chicken, tofu or salmon, rice noodles with chopped cabbage and mushrooms. A dash of garlic, a dash of ginger and splash of wheat free soy sauce made for a tasty and tolerable dish. I couldn't handle making dinner.

Slowly I gained ground. I stopped napping during the day. Twelve hours of sleep dropped to eleven and then to ten. I could add an occassional shower. I didn't need as many blankets. I could read a little bit. I could sit at the computer for a while. I could sit out on the deck for a bit. I felt well enough to add the chiropractor to my list of office visits. After two months I managed to make simple dinners every other day or so. I even managed dinner for company when my husband's friend came for a visit. I was getting better it was just slow. I even started toying with the ideas of getting back on the ice and getting back to work.

Then I was unexpectedly felled again. It came out of the blue. Being a girl I have cycles. Well, for some reason this one knocked my flat on my butt. I was back to sleeping 12+ hours a day. Taking naps during the day and not having the energy to do anything. What the hell happened? Why was this cycle different?

Now several weeks later. I'm not back to where I was that wonderful Sunday when I made dinner for our guest. I can function on 8-10 hours of sleep with no nap. I can make breakfast and lunch, take a shower and go to one appointment but that is about my limit. I get dizzy and nausous if I do more. My sore throat seems to be a thing of the past but I still get fevers of 99-100F fairly regularly. My days are now split up into three pieces. Morning:get up, eat, shower, go to an appointment, eat. Afternoon: lie down for 4 hours. Evening: get up, eat dinner, watch movies or read.

I'm wondering if I'll ever get better or if this is truely chronic. I just got sent to the virologist. He is doing more tests. I'll get to the tests in a later blog. What in hell is happening to me?