I wanted to give a quick update on my health situation since so many of you commented on yesterday’s post about coughing up blood. Thank you to all of you who sent your thoughts and prayers. I did end up going to Urgent Care, where they did a chest x-ray and came to the conclusion it was bronchitis. So I’m on antibiotics yet again (the third time in the last few months).
I’m a little freaked out today. I’ve had a chronic cough for years, which we have always contributed to sinusitis and my chronic sinus infections. But today for the first time, I actually coughed up blood. I’m not sure if I should go to Urgent Care or if it is really that big of a deal. I may have to contact my doctor to see what she thinks. My chest hurts too, which concerns me even a little bit more. So needless to say, I’m not up for writing a long post today.
Having CFS/ME really sucks sometimes. On Tuesday I went to my traction physical therapy appointment for my bulging disc in my neck and they asked me to do a few minutes of really easy, simple exercises that should have been a breeze. Instead, here I am, 35 years old, looking fairly healthy and fit, and yet, I had to constantly take breaks from even these few little stretching and postural exercises. It makes me feel like I’m really living in an 80-year-old body.
It is embarrassing as well, because I fear the judgment of those who see how little I am actually able to do. I worry they will just judge me as lazy or think I am just being difficult, which is entirely the opposite of my personality. I’m the kind of person who goes out of their way NOT to cause trouble or slow things down. I often wish other people really understood how crippling chronic fatigue syndrome can be. For instance, all my adult life I ALWAYS took a shower every single day and washed my hair. Now, I’m lucky if I can find the energy to wash my hair every other day, even though my OCD traits are going crazy at the change in my lifelong routine. Even typing these blog posts requires frequent breaks.
Sorry if this post seems a bit whiny, it just sometimes hits home over little simple things, how much my life is affected by my new physical limitations, and it is hard to accept.
* Art by Maranda Russell
Today I’m feeling about as old as Bugs and Daffy look in this picture I colored a while ago. I’m only 35 years old, but it often feels like I am much older physically, thanks to the chronic fatigue syndrome and fibromyalgia. My husband currently has the flu and when he was telling me how bad his body aches and fatigue were, I couldn’t help but think that I’d never be able to tell the difference from my everyday body aches and fatigue. In fact, with my chronic ear and sinus infections, the only way I ever know for sure if I actually get a virus is if I am running a high fever. Otherwise, I figure it is just my normal daily crud I have to deal with.
Sometimes it is easy to forget what it was like to NOT feel sick all the time or hurt constantly. I can’t even imagine living without it all now. I’ve become so used to the routine that I’ve accepted it in a sense and admitted defeat in my own mind. That is likely not a good thing, considering that I feel I’ve lost all hope to ever feel healthy again. I’m not writing this today to try to illicit sympathy or just to whine, but it is what I’m thinking about and dealing with, so I felt it only honest to share. If you are a fellow sufferer, let me tell you that I am truly sorry you have to go through all this as well.
Hello everyone! Well, yesterday I finally got to go home after spending 6 days in the hospital. Spending any time in the hospital isn’t the most pleasant way to spend time, so 6 days there certainly isn’t a party. However, some good did come out of the experience. For one thing, the original problem (horrible side affects and adverse reactions from prescription medicines) was solved….at least I hope so. I only say that I hope so because too often in the past I thought that a medication change was beneficial, only to develop an intolerance, allergy, or a Lollapalooza of side effects later.
Another good thing is that I really felt like I opened up and made some friends while hospitalized. After moping around the first day or two and even getting enraged because I couldn’t go home yet, I finally sucked it up and started coming out of my room to hang out with the other sickies. I met quite a few others, who, like me, were struggling with the results of pharmaceutical persuasion. Others were walking around slower than molasses, giving me the impression they were not currently inhabiting their physical form. Turns out I was wrong about at least one of those cases though. Who would have guessed that the guy who left me wondering if he was mildly or even moderately retarded was actually a highly educated and trained research engineer for the United States Air Force? Here I was thinking he was a few french fries short of a Happy Meal, when he is actually helping design and produce bombers.
Another positive? I found a doctor who seems almost a little TOO interested in Aspergians lol. As he declared himself (in similar words at least), “pretty much every great advancement in human history is due to autists”. I’m not sure about the actual historical accuracy of that statement, but can’t say there isn’t some kind of truth hiding in there. Apparently we neurologically diverse humanoids are pretty fascinating creatures to some out there.
A few other brief things I learned:
*Apparently you don’t insult Axl Rose. I don’t care though, the guy always seemed like an asshole (just ask his ex-bandmates).
*Having your own room can make all the difference when you are autistic and forced to live in a crazy sensory environment.
*It is foolish to pick up bugs when you don’t know what they are. The suckers might deliver a wallop of a sting!
*Sometimes the smallest act of kindness, like giving up something you want because someone else wants it even more, can make all the difference in the world to someone.
*Just saying that you like manga is enough for some people to love you!
*Nurses are often the true heroes of healthcare.
I found parts of this book truly fascinating. Who knew that you could even have a stroke that completely shut down one half of your brain but left the other half functioning normally? Think you are truly left brained or right brained? Find out for sure here!
Well, I’ve officially started allergy shots. Not long ago they conducted a skin allergy test on me to see if that might be contributing to my chronic ear/sinus/respiratory infections. They had already once run an allergy blood test on me (which showed I was only allergic to dogs), but they said the skin allergy test was more accurate and wanted to see what it read. So, I took a week off from all allergy medicines (which was awful in itself in many ways…and who knew that going off Zyrtec could cause withdrawal symptoms???), and then went for the allergy test.
They ended up poking me almost 100 times, checking various strengths of 27 different common allergens. By the time the lady had gotten to the third round of testing (around the 60th shot), I was really struggling to make it through. Fibromyalgia makes your pain response to anything worse anyhow, and getting stuck that many times can begin to feel like some kind of medieval torture device. By the end, my arms looked like cheese graters, with rows of holes all over them.
I waited a few minutes for the nurse to tally the results and found out I was allergic to 22 of the 27 things they tested for, which means 3 vials worth of shots that I’ll have to take for the next 3-5 years. While the ENT doctor does not think this alone is at the root of my chronic infections, she definitely thinks it could help.
The thing that frustrates me greatly is that I was tested for all this stuff by blood test a few years ago and it only showed ONE allergy! How in the world could the blood test be that inaccurate that it didn’t show one other allergen, when I am allergic to at least 21 other common allergens to the point that I need long-term treatment? I know for a fact many of the things I tested greatly allergic to in the skin test WERE also things they tested for in the blood test. In fact, for the skin test, I tested LESS allergic to dogs than many of the other allergens that didn’t show up at all in the blood test! How could the first test have been so inaccurate, and do physicians know exactly how inaccurate the test can be? If so, it sure would have been nice if someone would have told me back then. Maybe it could have helped prevent a few years’ worth of pain and suffering!
I’m curious, has anyone else had both tests and had such widely varying results? If so, did anyone ever explain to you why? I would sure like to know for myself.