Ya’ll get a second post this week because I need to vent about my frustrations in finding a chronic illness or chronic pain support group. It seems that if you have a chronic or invisible illness you are invisible to the world. I have found less than a handful of support groups in my area for my various health problems and while I have a more open schedule, others may not. Luckily I was blessed to find two migraine/headache support groups at the hospital I will be transferring to once I am 18. But for my pain, my dizziness and fainting? I have yet to find a POTS group in my area that would take someone not technically diagnosed, but that has all the symptoms. I’m looking in to a pain group but I have no idea where they are located or what times they meet. It seems that all the support groups and charities are directed towards children and teens with cancer or other life-threatening diseases like Sickle Cell Anemia or Cystic Fibrosis. And that’s awesome! Groups like HopeKids and Amanda Hope Rainbow Angels give the support and dignity and hope that kids fighting terrible battles need. But what about those that struggle everyday? That don’t get to go in to remission or get to be cured? That may not have their life threatened everyday, but most definitely have their lives altered for good? I’m not trying to whine here I’m trying to advocate for myself. I feel alone and forgotten and I sure as hell bet other invisible illness fighters do too. Just because we don’t look sick doesn’t mean we aren’t. Just because we look like we’re keeping it together doesn’t mean we don’t want to break into tears and cry for hours. We need help and support too. Whether we band together and create groups ourselves, or kind souls start up safe havens for us, it needs to be done. It’s ok to show your hurt, because we all need help at some point in our lives.
Oh my god. I finally have internet! It’s been 2 weeks and I finally have internet, hooray! I am soo sorry I haven’t been keeping up with my weekly blogging but for the past 4 weeks my family and I have been packing up our enormous amounts of stuff, hauling it over to our new place, unpacking said stuff, and being without internet for 2 weeks. It has been hectic. Especially since we have two asmatics on the measly moving team of 4, one with a back problem and the other that faints in the heat… which was nearing 100 on the days we hauled the furniture and other large stuff. It was hard. It sucked. But we got it done and are now mostly settled into our cozy new little home.
Moving on to other, more health related news; I think I had a seizure. On April 20th, 2017 I got up to answer the phone, I noticed my hands and feets were kind of tingly when I picked up the receiver. The next thing I know I’m waking up from a sort of dream like state and I can feel the top half of my body convulsing, arms drawn close to my chest. I didn’t wake up on the floor though, I was still standing and I could hear the dial tone of the dead line beeping. I was alone in the house so no one saw what happened. I have no idea how long I was out, I guess long enough for the person on the other line to hang up and the line to go dead. I don’t have a neurologist appointment till July but I am going to call and see if she can get me in any sooner. Other than that I have been doing pretty decent on the headache front, no er trips or hospital stays so that’s really great. I just hope it stays that way.
Well, it’s a Tuesday but at least I’m writing this week. Unfortunately these past 7 days have been quite rough on me; I’ve been struggling with a flu like virus that started out as what I thought was just extreme allergies. Within two days of the allergy symptoms, my body was sore to the touch and my throat was swollen and scratchy. I was completely wiped and could not stop coughing. All my energy was being put into recovering so I could make it to my family dinner on Saturday. I made it; but I didn’t last long and eventually got a headache from all the coughing and sniveling. The virus exasperated my dizzyness and headaches and I was and still am way disoriented and confused. I’ve thought it was a different day twice this week and I’ve been putting my medications back in the weirdest of places. I can feel myself getting over it though and I’m almost back at full speed. It just goes to show, everyone has sick days and needs rest sometimes.
After my Neurology appointment last week my doctor and I decided to keep on doing what we have been doing. We think instead of only keeping me on the Lyrica, it would be best to still keep me on both the Lyrica and the Zonisamide even though they are both anticonvulsants and do pretty much the exact same thing. This high dose combination of both drugs seems to stave of my migraines the best and decreases the intensity of my everyday headaches quite a bit. My new blood pressure medication seems to be doing something…though I’m not sure if it’s enough to keep me on it or if we just need to increase the dose to achieve better results. I have one more appointment with my pediatric cardiologist then I have to switch to an adult provider who may or may not be open to other treatment options that my current doctor already ruled out. My online classes are nearing the finish line and my homebound classes may even finish a few weeks early so that has me more excited for summer and my Cali vacay than ever. I’m stoked that I’m back on track school wise and am feeling better and can’t wait to see my cousins in a few months. That’s all for now, I’ll fill y’all in some more next Monday.
Well my cardiologist appointment went decently, I got some answers but they were mostly what I have been told before so it’s not anything enlightening. Basically I was told that, and I quote my doctor, I ‘almost have Postural Orthostatic Tachycardia Syndrome’ He said I have all the symptoms except for the fact my heart rate only goes up about 20 beats when I go from sitting to standing as fast as I can. People that have POTS have heart rates that usually go up about 40 beats or so. I’m glad I don’t have POTS, but I’m frustrated I still don’t have anything to put my finger on and say ‘that’s why I feel so dizzy and nauseous today’ But I may have to come to the realization that I may never have solid answers. I have been told by many doctors that people like me who have chronic dizziness and fainting, sometimes just have chronic dizziness and fainting because that’s the way their body works. Now that sounds like a loud of it to me but hey, I haven’t studied medicine for umpteen years. So to remedy my symptoms hopefully we are trying a new medication that raises my blood pressure. I’d really rather it not do this but I trust my doctor and it’s the only type of symptom relief that won’t interfere with my other meds. I’m also transitioning from Pediatrics to a regular Cardiologist in the next few months; stressful enough as that is, I’m excited because I will be able to get a second opinion on my condition which always seems to give me a bit of comfort. More updates will come soon as I have a upcoming Neurology appointment this week.
Two full days since the Renaissance Festival and I’m still thoroughly exhausted. Don’t get me wrong I had a fantastic time, I love the Ren Faire and never miss out so I had decided that I’d power through.We visited all my favorite booths, the chocolate shop, the Fairehaven Greyhounds,and a new favorite a pirate shop with replica cap guns. I almost bought one; they were absolutely gorgeous.Overall it was another great Ren Faire experience. I thought I’d pay for it dearly the next day as I usually do with grand outing like this, but instead of a wild migraine for a week I received only a bad headache continuing till today. My new meds saved the day! Huzzah! Since then I’ve been resting and catching up on my online homework, which I got behind on when I was in the hospital back in February. Taking it slow and taking lots of breaks. I can have a good time too it just might be a little different than yours.
Hello fellow bloggers, I am not quite sure how to do this but I’ll give it a shot. I will try to post once a week, most likely on Mondays so look forward to my updates! Make sure to read the About to get to know a little more about the craziness that is my life. Ciao for now!