For the first time since forever, I didn’t make a New Years resolution. The past two years my resolutions have been somewhere along the lines of “be healthier” and “manage my illness more”, but this year I didn’t think it would be fair to hold myself accountable for such an impossible goal.
It is not my fault that I am sick. It is not my fault that it is getting worse. And it is definitely not my fault that no treatments are working.
This year my resolution is:
What does that mean? I’m probably not even 100% sure at this point. I am hoping that this is a resolution I can remember throughout the year and that it is something that’s meaning will change depending on how life goes this year.
Right now, to me it means to keep going; to not get discouraged and not give up in seeking an appropriate treatment for my pain. To keep working even though I may be sacrificing my health for it. Rest, but do not give up.
This morning I finally set up my heart monitor. I received it Saturday but I put it off until now. I was enjoying my last little bits of freedom I guess.
I’m stuck with this thing for 30 days. I am scared of these little sticky things getting caught on clothes or ruining my skin underneath it.
Related to this, I have a blood pressure medication now. Because I have high blood pressure. And probably have since last year around this time when I saw that really shitty cardiologist. Thanks for nothing, guy! My new one is here at Johns Hopkins this time. And believes me!
Hopefully these 30 days will pass by quickly and I won’t have too much trouble with this thing. And also that there’s nothing wrong with my heart! The other night I’ve decided I want to live long enough to go to space. I want to be a space grandma. So my heart better act right so I can make this dream come true.
Friday’s withdraws were BAD. In the last hour of work, it got so much worse. And I was hidden underneath my desk, thinking how awful it would be if I ruined everyones day and went to the hospital.
When I finally got home, I broke down and ended up in the bathtub with all the lights out. I sort of consider it my little comfort place. I hadn’t been in the bath for more than one minute when my phone rings. It’s the psychiatrist I saw a few weeks ago with some info about pain specialists and biofeedback. And while I’ve got him on the phone, I tell him about this horrible withdraw situation I am in. He writes me a one month prescription and I pick it up from CVS. It was the simplest fix, and here I was thinking I was going to end up in the hospital. Sometimes it just amazes me how things like that can fall into place.
In the meantime, I’m only taking half the Cymbalta dose until I can get a new neurologist. I swear there’s nothing scarier than a sudden detox from a medication!
The last time I was at Johns Hopkins, I got a prescription for Depakote. My neurologist had mentioned it to me before, but the side effects sort of made me not want to take it. So I have had this drug, just sitting in the bottle on my dresser. I look at it everyday when I take my other medications.
So far my other medications haven’t made a significant change in my pain level. But I am terrified to take the Depakote. The side effects he mostly pitched to me were weight gain, hair loss, and acne. Now I already have acne, and it seems to be mostly under control for the moment. Earlier this year I had a really bad bout of cystic acne which sort of faded away into this more manageable version which can be covered by makeup as long as I don’t mess with my face. I don’t want to gain weight or lose my hair either!
But then there’s the possibility of being migraine free. Of course I can always stop the drug once I notice a bad side effect. But what if I don’t notice until it’s too late? I don’t keep track of my weight all the time, and I know it sort of fluctuates. But I don’t want to get to the point where my pants aren’t fitting anymore! And I love my hair, I don’t know what I would do it more of it falls out than what already does. And the acne, I don’t know if I can go down that road.
For now, the Depakote will sit on the dresser, taunting me every morning and every night.
Lots has been going on and as usual, I don’t have the words to describe it. Some weeks ago I saw Dr Jennifer Smart at the Towson University Speech & Hearing Clinic. I have trouble understanding speech and communicating in certain social situations, but I’ve managed to pass all my hearing tests. At the last test, they recommended me to be tested for Auditory Processing Disorder, which is more neurological than anything physically wrong with the hearing process.
Turns out I have an auditory processing weakness. So not fully ADP, but there is a difficulty I have with processing and participating in speech. I’ve got a bunch of programs recommended to me as well as a hearing device. I’m still waiting for the report they’re going to send me with all my results as well as the purchasing info for the hearing device. I think it’s just some sort of amplification system, but I’m no expert on aids for hearing.
Once the report and everything comes in the mail, I think I’ll make a little post with all the info & recommended devices and programs 🙂
I did the math, it takes about two weeks for the Botox to kick in and some sort of small relief for me. March 24th 2016 was my first round of Botox for migraine. A little over 2 weeks later, on April 9th, we went on a trip and it was the first time in forever when I can recall laughing without pain. So I think that was thanks to the botox? At least I’m hoping so!
My most recent Botox injections was June 23rd. About 2 weeks before that is when I remember being in more pain than the previous months. I suspect it was the botox wearing off. I should expect some relief between July 7-9th. I HOPE. This is all a little frustrating to calculate because there are so many unknowns.
In the meantime… I am trying not to take ibuprofen or anything else OTC. I remembered a prescription I had for Reglan (metoclopramide). After doing some research, I learned this is one of the drugs I was given during that awful infusion process at the end of last year. And one of the side effects is anxiety/feeling panicked.
I don’t feel so good about this decision, but I’m risking it. I’ve got nowhere else to be tonight so if I get hit with side effects, I’ll just wait it out in the bathtub, since that usually calms me down. With a little bit of google research, I took the Reglan with some Benadryl (or the generic equivalent). Desperate times call for desperate measures. Wish me luck!!
June is Migraine Awareness Month!!!! Here are some facts:
Migraine is the 6th most disabling illness in the world
More than 4 million people in the US have chronic daily migraine
18% of American women experience migraines
More than half of all migraine sufferers are never diagnosed
Chronic Daily Migraine has really sidetracked my life; I never thought it would be like this. I see my neurologist more than my friends. I think a little more education and awareness is needed. Migraine is not “just a headache”, it is an actual neurological disease.
I was nominated for this thing! By the lovely shanna815x, a fellow chronic migraine sufferer. I mostly copy/pasted bc I’m lazy :).
The award goes to bloggers who have less than 1,000 followers and have been blogging for less than two years. Here are the rules when you have been nominated for the Liebster Award:
• Thank the person who nominated you, and post a link to their blog, in your blog.
• Display an image of the award in your blog.
• Answer 11 questions that are asked of you by the person who nominated you.
• Nominate up to 11 bloggers to receive the award next.
• Ask these bloggers 11 new questions that you provide.
• List these same rules in your own blog.
• Inform those people who you nominated, that they were nominated for the Liebster Award, and provide a link to your post so they can learn more about it.
Here is the questions she has asked of me: 1) Favorite animal? Jellyfish. I admire how they don’t have a brain but they still exist and the way they move is sooo pretty. 2) What is your dream vacation spot? Anywhere exciting, something like New York. 3) What is a special skill or talent you have? Driving in a blizzard without 4wheel drive. 4) Where did you grow up? Baltimore, MD 5) What is your favorite season? Fall. 6) What is your favorite song at the moment? Probably something weird on pandora that doesn’t have words lmao. 7) If you could meet one famous person, living or dead, who would it be? Simon Pegg. Ever since Shaun of the Dead, I’ve admired him as an actor and filmmaker for some reason. 8) What is your idea of the perfect job/career? To own a business, in photography/something creative. I think I am very very slowly working on this… 9) What makes you smile? DOGS!! Especially my dogs when they do something cute/dumb. 10) Why did you start your blog? Mostly as an outlet and to find other people who feel like I do. I lost almost all friends when I got sicker. 11) What is one thing you have learned in the past year? No one cares that you are sick really.
This is the part where I tag people, but I have no idea how to tell which blogs have less than 1,000 followers or have been arounds less than 2 years. Maybe if someone wants to tag themselves from my post, let me know! Leave a comment so I can read your answers.
Tell me something interesting about you.
What is your favorite thing to do on a good day?
What is your favorite movie/TV show/book?
What is/was your favorite subject in school?
Do you believe in ghosts/supernatural?
Tell me your proudest moment.
Which language do you wish you could speak?
Do you have any pets?
Why did you start your blog?
What is one thing you have learned since blogging?
What is one thing you wish you could shout to the world?