So I have been trying to get into a geneticist at my local hospital per my neurologist’s recommendation, to test for Ehlers Danlos Syndrome. Good news, I might finally get answers. Bad news, they are booking out till December. I have soo many questions and have had them racing around in my head accumulating for over a year, waiting for someone to pull the leaver and have them all come spilling out. Frustrations with my cardiologist who I feel is not a right fit for me, and trying to find a adult primary that takes both my insurances are just more reasons I feel like I can’t reach the surface and am running out of air. It’s almost comical how a chronically ill person’s life can go from ‘top of the world’ to ‘handle with care’. A few weeks ago I was camping, in less pain, and actually enjoying being out and about. If you read my last blog you’ll understand how awesome I felt. Then I came back to the Valley and it was like I got caught in a landslide. Work dilemmas, insurance crap, appointment challenges, my health declining because of this god damned retched heat. It was a shock to come back and suddenly feel disabled again, I still can’t believe how much of a difference a change of scenery made. I’m just glad I can talk to my neurologist soon and discuss some ideas I’ve been itching to get out. I just hope I can get some answers soon before my head explodes. See y’all soon ❤
After a little hiatus I have retuned! I’m back from my fabulous camping trip! I feel refreshed, I got to see family I haven’t seen in years, I got to got to the beach every other freaking day! Ok, calming down. So my family has a tradition of traveling to a little coastal tourist town called Pismo Beach, California, it’s a little bit north of Arroyo Grande which is a little more north of Santa Maria. It’s an amazing little place with a state park campground and a rocking clam chowder place that has lines out the door most of the time. We stayed at the North Beach State Campground which now feels like a second home from the amount of time I have spent over countless summers there. We had about 25 relatives in the campground at one time, but some of them left after the official family reunion luncheon. Getting to camp out with my family for over a week straight, getting smelly from the lack of taking showers and getting on each others nerves was amazing. I missed it. Camping at Pismo has always been a fond memory and getting to renew that with my cousins, aunts, uncles, and grandparents was probably the happiest and most pain free I’ve been all year. My favorite memory this trip will be on the trip back to the good old valley, my great grandma treated us to Sizzlers since I had never been and the waiter asked if she was a senior, she gave a slight laugh and said something along the likes of “most definitely” or “of course!’. You see my great grandma is 87 and when the waiter asked he age he could not believe it, most people can’t though because she doesn’t look a day over 70 and she’s as feisty as they come. But the disbelief in his eyes made me realize just how much I love my great grandma and how much I appreciate and cherish that I get to spend some much time with her (she moved down to the valley to live closer to us recently). Sorry for getting so sappy, I just love that I get to see my family when I do because they live quite far and spread out.
Camping not only was happy and fun, it was almost like a pain reliever. I had far fewer and less intense headaches because of the cool coastal air and I had hardly any back pain even considering I slept on a mostly deflated air mattress for a week. Now my joints on the other hand hated the cool air. They flared a lot more than usual, with joints that rarely hurt giving me mobility problems. Another big issue was my neck. A big part of Pismo is it’s bustling downtown, you can walk there from the campground so we would spend hours down there shopping. Usually, shopping is difficult for me in general, the walking for long periods of time brings on dizziness, hip and knee joints flare, my cognitive ability fades and I get spacey. But those got better at Pismo and my neck got worse. I would walk for only ten minutes before my neck started to feel like it was on fire, like someone had hit the joint where your neck connects to your spine with a brick. It would hurt to look down, up, side to side, I had to keep my head in a very specific position for it to not hurt, It sucked to be honest. Having to cut hang time with the cousins short because of my health is something I hate to do. But even on vacation I have to take care of myself, I can’t push myself and risk further damage to my health. I know my chronic illness warriors can relate and I just want to remind y’all, rest days are important, mental health days are important. Take care of yourselves so that you might take care of others. All right I’ll wrap it up, have a good day y’all and see ya soon ❤
Well with only a few bad days in the past two weeks, and a trip to California to look forward to I’m feeling pretty awesome. I’ve been able to see two movies this month, one was the amazing Wonder Woman that I’ve been wanting to see forever. My stomach cramps, nausea, and bloating after eating have been getting worse though and the delicious California Pizza Kitchen dinner that we had after the movie was almost brought up. But zofran to the rescue! Who would think a tiny little pill could help so much? I was able to make it home to rest without any complications. Now it’s just 4 days till I leave for Cali and 6 days till I see my family! The picture is from our trip two years ago.
I got outside and did something today!! I helped cut down branches of some eucalyptus (a put in a pic for you guys in case you have never seen one, p.s. koalas eat it!) offshoots. I stood and using pruning shears, and cut the little branches into smaller pieces so that they would fit in the green bin. I did this for about 45 minutes to an hour, and surprisingly I didn’t need to take any breaks. I didn’t get very dizzy and I only felt like I was going to faint for the last 10 minutes or so, but I was so close to finishing that I didn’t stop. That got me into a bit of trouble and when we came inside to get drinks after we had finished, I fell and lost vision but I don’t believe I lost consciousness. After coming home and taking a nap I woke in a decent amount of pain. My hips ached, my head hurt and my shoulders were sore but nothing a little bit of tylenol couldn’t ease. And now I sit typing to you about my eventful day. I’m glad I get to show ya’ll glimpses into my daily life and its ups and downs, it’s relaxing to write to you guys and who knows maybe my blogs will show someone that they aren’t alone in their journey.
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.