| Do you ever wake up on Monday morning and just know that it's all downhill from there? This is my week. To begin, I must delve into the hell that has been my life for the last 1.5 years. I've been officially diagnosed with Chronic Fatigue Syndrome (CFS). The short description is, "CFS often manifests with widespread myalgia and arthralgia, cognitive difficulties, chronic mental and physical exhaustion, often severe, and other characteristic symptoms in a previously healthy and active person.". If you talk to anyone that has been diagnosed with this, I guarantee you, their description would be pages long. For me it began with a flu, as it does with a large majority of us. Within 5 weeks of the onset of the flu, I was bedridden for 2 mos straight. My heart raced constantly. I was short of breath. I couldn't eat anything more than a piece of toast or some banana. I suffered from severe insomnia....not getting anymore than 2-3hrs in a 24hr period. I lost 25lbs during this time. I was tested for everything from thyroid issues to brain tumors. Now, I already knew I had thyroid issues and knew deep down that this wasn't my thyroid. It took a few months and my tenacious family doctor to figure it out. On a hunch, she decided to test me for a virus that is extremely rare in adults. She fully expected this to come back negative, but wanted to do her due diligence. 2 weeks later she called me at 7:45 in the morning, more excited than I've ever heard a doctor, and told me that the markers had come back very high for the virus. To put things in perspective; this virus, HHV-6, is the same virus that causes Roseola in children. By the age of 2, 98% of all humans are immune to this virus. I some how became immuno-compromised and lost my immunities to this virus. This usually only happens to people that have either had stemcell replacement, an organ transplant or those with HIV/AIDS. None of these applied to me. Somewhat similar to an adult getting Chicken Pox (also a strain of a Human Herpes Virus), the effects are far worse than when children come down with it. My doctor knew of a world renowned physician at Stanford that was doing groundbreaking research, specifically linking HHV-6 to CFS. I was sent to him asap. Upon meeting him, I found out that he's one of very few doc's in the entire world that are willing to treat HHV-6. Let me backtrack a bit....with these viruses, the results show up as either an active virus (HHV-6A) or a latent/past infection (HHV-6B). When I was first tested, it was A. By the time I got in to see the doc at Stanford, it had fallen into the B column, but the markers were now triple what they were to begin with. Epstein Barr Virus (EBV) has also been associated with CFS and this doctor is convinced that both of these viruses play a huge role in the diagnosis and treatment of CFS. In 2006 he'd done a controlled study with a very strong and potentially toxic anti-viral drug called Valcyte (valgancyclovir) and had seen amazing results. Before he would start me on this medication, he wanted to test me for other viruses....just in case. As it turns out, I've got 2 other very prominent viruses that could also be contributing to my symptoms. After careful consideration on his part, he chose to start me on Valcyte for 6mos. I was warned that this drug could cause liver cancer and it would most undoubtedly kill any viable eggs left in my ovaries. As far as I was concerned, this was a no-brainer. I needed to get better and be a mom to my boys. I couldn't worry about future babies. As for the cancer part...that could or could not happen...if it does, I just hope that my kids are adults before it strikes!!! I started on the meds in August and was back in bed for about another month while I went through cell die off. I was warned that this would happen. Fast forward to today....I've been off Valcyte for 4 mos. I did see about a 20% improvement and was told that it would take at least 9-12 mos to get back to "normal" and ws told to take a much less toxic anti-viral during this time. I've been on full time disability for this whole time. I miss my life....I can't go on field trips. I can't exercise...at all! I can't clean my house and I can't stand for more than 10-15 min's at a time. And I'm considered one of the lucky ones! I am truly thankful that I found a doctor so quickly that was able to offer a possible solution. So many people have suffered from this for decades....I can't imagine. I've had several "crashes", as they're called and this week is one of them.....my crappy Monday. I got through my day and was doing what I could to prepare for Joe & Tom's return from their dad's. I picked them up from school and it didn't take long to figure out that Tom was sick. I'd seen him several times, briefly, from Thurs-Sat and saw that he had a really stuffy nose. I finally told his step-mom on Sat that he was sick. I wrongly assumed that this was get someone's attention. Nothing was really done about it and was even told by her on Sunday that he was fine. Right. I kept him home on Tues and took him to the doctor. Not surprisingly, he had a really bad sinus infection. Really??? Big shocker there. Being on disability, funds are extremely limited and I wasn't happy about the copays that should have been taken care of by the other parent. Whatever..I've moved on. Their health and well being is what's most important. And then there was yesterday.....let's just say that I was in a really rotten mood over the whole democratic election issue. Frankly, I'm talked out on it and just don't have the heart to type it all over again. Let's just sum it up by saying that I'm very sad about the outcome with Hillary. I'll get over it....I think. Today brought its own stresses....I haven't slept well for 2 nights in a row and feel like crap. I also found out that a nurse practitioner had wrongly diagnosed something I'd been taking medication for over the last 2 weeks. Thanks! I love throwing even more money away and taking meds that I don't need. For those of you that don't know me very well, I have little tolerance for 1) incompetence & 2) bad customer service. I become a pit bull when I'm wronged in these two areas. I can't tell you many times these words have come out of my mouth, "May I please speak with your supervisor?". That tenacious doctor I mentioned above has recently hired a nurse practitioner. I gave her a shot and she failed....big time. The last bit of of stress this evening is knowing that severe thunderstorms and tornado watches/warnings have been issued for the town my parents live in, south of Chicago. Thankfully they have a basement....but it's still scary. I still have vivid memories of a summer day....I was probably 7yrs old...give or take a year....the sky turned dark and my mom was yelling at me to "get in the house NOW!". We didn't have a basement, so the next best thing is an interior room. We didn't have one of those either...but the closest thing was the laundry room that had a tiny window. The winds started howling, the rain pouring, lightening brightened the little room like a Christmas tree and the thunder shook the house like an earthquake. My poor little brother (2 at the time) was so scared, he took his blankie and crawled into the dryer. Mom and I sat on the floor. My mom was and is as cool as a cucumber in times of stress...but being a mom myself, she had to have been ready to pee her pants! At one point the sirens went off. As scared as I was, I remember feeling a sense of excitement. Odd, I know. I still have these weird moments today during earthquakes. The winds were shaking the house and windows so badly, we thought for sure the house was going to fly away. Then we heard a temendous "BOOM" and the house really shook. About 15 min's later things died down and we walked into the living room to see what the heck had happened. Our neighbors across the street had a huge tree in their front yard. Lightening had hit this bad boy and split it right down the middle. I'll be damed if the half that fell missed our roof by less than a foot. There had been flash floods and people were kayaking down the street. I really wanted to play outside in the water. But calmer and wiser heads prevailed (solely my mother's) and I wasn't allowed for fear of downed power lines in the water and snakes, of all things! Wow....this has been a long, yet cathartic entry for me. It's getting close to midnight, the kids are asleep and the dog is snoring.....loudly. It's peaceful and I actually feel pretty good...outside of being sleepy! |
