Yesterday I saw my new neurologist for the first time to try to figure out why I am suddenly having so many migraines. I must say the visit didn’t start out well. For one thing, they only see new patients first thing in the morning, and I am NOT a morning person. However, I did make it there on time at 9am in the morning, but then I ended up waiting to see the doctor until after 11am!!! Needless to say, I was not a happy camper.
The doctor seemed rather grumpy when he finally came in too. Maybe he was having a bad morning (I would think so with being that behind schedule for a specialist), but after waiting two hours, dealing with a grumpy doctor was not ideal. I will say that even though he was a bit grumpy, he was thorough at least. He asked tons of questions and investigated all the leads I could provide, even bothering to request additional medical records and taking a second look at my imaging tests that have already been done.
By the end of the visit, he had decided to send me for an EEG to check for possible mini strokes or seizures, and another head/neck MRI to see if my cervical issues have worsened in the past two years or if anything else has changed. He also wants me to be tested for Meniere’s disease, an inner ear disorder that may be contributing to my vertigo, ear pain/pressure, and tinnitus.
He noted that my neck was constantly spasming, so he switched me to another muscle relaxer and also put me on Topamax to try to help prevent the migraines (we are hoping it might help my fibro pain some too). I guess we’ll see how it goes from there.
Feeling like shit today. Woke up after sleeping 10-11 hours, ate breakfast, and then went to take a nap for another couple of hours. So, why am I so exhausted and feeling like I got run over by a steamroller?
Well, yesterday my husband was driving home from work when a tire fell off his car. I had to go pick him up and once I got there, we had to wait for the tow truck to come get the broken down car. It was supposed to be about an hour before the tow truck arrived, instead it was almost three hours. Three hours of sitting in the cold (we did turn on the heat in my car occasionally, but didn’t want to run it the entire time we were waiting). Three hours of sitting in a position that is not good for my back, neck, and joints. Three hours of my joints stiffening due to the cold and being cramped in the car.
I knew today I would feel rough after all that and expected my CFS/ME and Ehlers Danlos to flare up. As usual, I was correct, but I wish I wasn’t. Those who don’t have chronic illness and chronic pain have no idea how easy it is for normal, annoying life events to set us back for days. I think it is something you have to experience to truly understand.
Our water heater sprung a big leak, so today I’ve been stuck at home waiting for it to get fixed. The hallway carpet was soaked through before we noticed the leak, so trying to dry that up has been a hassle as well. I really hope it doesn’t cause mold to grow where I can’t get to it 😦 That is the last thing my overly sensitive allergies need.
They had to drain the water heater before trying to fix it, so no hot water until it gets fixed and fills up again. It is funny how most days I put off taking a shower until late in the day, but when I can’t take a shower, it is ALL I want to do lol. I feel dirty, grimy, and disgusting, even though I know that is mostly in my head, since I took a bath yesterday.
I had to cancel my therapy appointment for today due to this annoying new development in home ownership, but that is ok, I really wasn’t feeling much like talking today anyhow. I don’t know if it is the stuff going on with the water heater, the rainy, bleak day outside, or just my ever-changing mood, but I’m feeling rather apathetic and blah today.
I want my hot water back!!! Waaahhhhhhh!!!!
Lovers Movie Night
By: Maranda Russell
He leans over to grab a magazine.
“People like you are so annoying,”
she sniffs disdainfully.
“People like me?”
he asks as he reclines back
and settles in to read.
Soon, he feels a tiny foot
wiggle over to nudge his shin.
“Why pay to see the movie then?”
with a deeply pained sigh.
“I hate you.”
When I joined Instagram a little while back, I originally started out trying to follow back everyone who followed me. My thinking was simple, if you are kind enough to support me, I want to support you. I still follow back many of my followers, but there are a couple kinds of profiles I have stopped following – those who ONLY post photos of themselves trying to look “cool” or “sexy”.
Of course, there is nothing wrong with trying to take an occasional photo of yourself in a funny “aren’t I so cool” pose, or showing off your sexy side…but when EVERY SINGLE PHOTO on your account is you in shiny sunglasses trying to look macho or “hot”, closeups of your thighs and butt, or your face pinched into pouty expressions, that just shouts fakeness to me.
I want to follow people who are real. I love following artists, other creative types, people who are passionate about their hobbies, inspiring people who are honest about their personal struggles, or people who share fun pics of their family, pets, and everyday activities. Am I the only one that has an aversion to the overly narcissistic, seemingly self-obsessed multitudes on social media?
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.