This is going to be one of those massively personal, vulnerable, in depth kind of posts, so if you follow my blog for the amusing mishaps as I make my products, then go ahead and skip this post. This is why I’ve been quiet lately. Hopefully this will help you to forgive my absences.
For a few months now I have been fighting what I thought was a nasty sinus infection that didn’t want to give up. They have a tendency to do that when you have Fibromyalgia (Fibro/FMS) and/or Chronic Fatigue Syndrome (CFS), so I wasn’t that surprised, and just kept trying to get over it. In my many years of dealing with my illnesses I’ve learned that Primary Care doctors hate when you know what you have and tell them what works for you, so I try to avoid having to see them as much as possible. When you have a chronic illness you have to become your own advocate and typically become way more educated on your illness than any non-specialist could ever be, and they don’t care to not be the smartest one in the room. I love the medical field, so don’t get me wrong – I’m just a little jaded and sarcastic when it comes to how primary care usually handles my health issues. *laugh* Anyway, something has felt off these past few months, very different than what I usually deal with, and I didn’t think it would be smart to try to ignore it any longer. I finally gave up and went in on Christmas Eve.
He prescribed an antibiotic (wouldn’t do the one my specialist said to tell doctors to prescribe to stop infections in my system, but I really didn’t expect anyone to listen to that anyway, due to that whole doctors hating to be told what they need to do thing) and ordered complete extended labs that they typically run every couple of years when something changes with my conditions. The antibiotic made me very sick and Christmas was a little difficult to get through, but it made me appreciate being able to see our closest relatives. Although the sinuses seemed a bit better I still felt that there was something more going on.
The doctor’s office still hadn’t called me with my results after a week, so being the control freak that I am when it comes to my medical care I logged into my medical record (bless the nerd that developed mychart) and looked at my records. I expected a few abnormalities that I’ve been borderline on for a while and sure enough, I finally reached a point that they’ll have to be dealt with. I wasn’t prepared for the other highs though. Some of the tests were items that I’m not familiar with, so I pulled up a few of my favorite medical sites from when I had to do medical coding and record auditing (it’s hard to audit a medical record for accuracy if you don’t know what the words mean, so I did a lot of research back then lol), and researched every abnormal result.
I have liver damage and a problem with my thyroid. All ready having chronic illnesses makes it hard to pinpoint what the most likely culprit is, though, because my daily symptoms are often the criteria for a lot of other diseases. I did a lot of cross checking and found the three most likely conditions: Hepatitis A, Hepatitis C, and reactivation of EBV (the Epstein Barr Virus). I had a severe round with EBV in my pre-teens to teens, which actually became CFS and prevented me from attending some of Junior High and High School in the traditional sense. My counts were so high on the EBV test that it’s useless to ever run that lab again, apparently, because most likely they will always show as extremely elevated for the rest of my life. So there’s no real way to diagnose that the blasted condition has reactivated and is no playing havoc with my system and chronic illnesses. Hep A doesn’t come across as too likely since the only way I could have contracted it is if someone spit in my food at a restaurant (my stomach rolls every time I think about that) or if someone handled something wrong at one of my doctor appointments. The symptoms and lab results fit, which made it a possibility to rule out though, so it’s on my list. Hep C fits in rather well, although I have no idea where I would have run across that little bugger. And EBV fits terrifyingly well. I left a voice mail for my doctor’s nurse to call me finally, back on Monday, but didn’t hear back until today, after I’ve been sitting with this information for a while. I couldn’t take it anymore and had to call them.
Possible reactivation of EBV shouldn’t be scary, but the first round brought about one of the hardest, and darkest, periods of my life. It was seriously as hard to deal with as the domestic abuse I suffered. That’s how bad it messed me up. Imagine being about 12 and the doctors have spent months trying to figure out what’s wrong with you, while some say it’s all in your head, and it becomes a struggle to even get out of bed to go lay on the couch. When you’re young you’re supposed to be bubbling over with energy and the excitement of all the new adventures of life. I overheard the doctor comment to someone that they weren’t sure if whatever I had was going to kill me from the way I was progressing. At 12. I remember that my mom bought me a bag of Andes mints at the pharmacy that day and that night she didn’t scold me for eating the whole bag. It’s funny how I can’t remember things from just a couple of days ago because of my illness, but I can remember that day and night so clearly. I remember the smile on her face as she looked at me after kissing me goodnight, the look in her eyes, and how her hand felt as she held my cheek. She was scared too. Things settled down a bit several months later and I was finally able to do more than just rest. I held food down again, the fatigue improved slowly, and I was finally able to go back to normal school. For a while. Then it started up again. We finally got a diagnosis of CFS. Basically the EBV had hit my system so hard that it had triggered a chronic condition where fatigue, and a laundry list of other crud, would challenge me the rest of my life. Since I came down with “the sinus infection” months ago I slipped back into that old pattern. I never realized it until I started researching the possibilities for my lab results. I sleep even odder hours than usual and I nap a whole lot. The day is considered a success if I can get out of bed, actually change into something beside what I slept in, and make it to the couch to sit down. I’m impressed with myself when I’m up in time with enough umph to cook lunch for us before Larry has to go to work. I try to do a little tai chi, Just Dance, or recumbent cycling, but to be honest it doesn’t happen much lately. I have a hard time taking care of the dog and doing a few basic household chores. Vacuuming wears me out as much as an intense round on Just Dance does. *bitter laugh* It takes me a week to get the energy up to go get groceries or go to the doctor’s. I’ve had trouble with food, I get sick if I try to eat or drink some regular items (like straight water! How insane is that?!), I actually fell asleep hunched over my laptop playing on SL while watching tv, and at times I don’t even feel up to being on my computer (which is SO out of character). Trying to actually make products sounds as likely as my bucket list trip to Scotland.
I wish it hadn’t taken abnormal lab results to realize how bad things have gotten and I really wish that I hadn’t had so long to think about what conditions they need to rule out. I am glad, however, that I won’t be so shocked when they discuss the results. Maybe this way I’ll actually hear what they’re saying and we can make a game plan. The nurse finally returned my call today after I muted my phone to nap (since it was after their business hours I figured yet another day without a call had passed). She left a message to call her tomorrow – they can’t get return calls after hours. I’m glad I finally can get some information from them tomorrow. I’m scared though. It won’t be possible conditions that fit according to research anymore. Tomorrow it’s numbers on a page that may seriously change my life. It’s “Well, the doctor wants to try…” or “We need to rule out…” or even the worst, “We’d like to schedule an appointment so that the doctor can talk to you in person”. I had to schedule plenty of those appointments when I worked for a neurologist and I’m afraid of not being strong enough to make it through one of those appointments without breaking down. I try to always focus on what I’m thankful for and not dwell on my daily struggles, since I know it can be worse, and I’m thankful for my blessings. I’m worn out from being strong every day though and I’m afraid of “my cup” overflowing when I finally find out what’s caused these abnormal spikes in my labs. I’m scared to see how the next chapter in my journey begins. I guess we all are at some point though. Being sick, losing so much of who I was and what I loved (along with some friends), losing my career when it just got really awesome, and becoming disabled in my thirties were supposed to be the worst things in my book, I thought. I truly thought I didn’t need to learn how to be even stronger. Every tree breaks if it gets bent too much and I’m scared that I won’t be able to stand strong through this, too.
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