ER Trips and PICCs

So I started this entry exactly a week ago. Exactly a week ago I went to the ER for the first time since the end of February. Of course like always I was admitted, a PICC line was placed, and DHE, a migraine treatment that restricts the blood vessels in your body,  began flowing through my  tired veins. This ER trip was brought on by more than just a 6 day migraine though. I fainted twice and fell four times in a 24 hour period. I was weak, shaky, and my blood pressure was incredibly low. At one point it hit 76/60 with my heart rate at 153. I called my cardiologist’s office to ask for advice since I never seem to know whether or not I need to go to the ER after I faint. The nurse told me I probably should go because my doctor didn’t get in until Thursday, so off to the ER we went. There, they went through their headache protocol steps; Toradol, Benadryl, Reglan, magnesium sulfate, etc. Meanwhile I went through 3 IVs, BTW my veins suck.  After the mag doesn’t help or only helps a little, depending on the migraine, they send me upstairs to a room of my own. Usually I spend 4-6 days in the hospital receiving DHE and the pre-meds  (Toradol, Benadryl, some form of anti nausea) through my PICC line, which I’ve had 7 of. This trip was a little different though as I needed extra anti-nausea meds to help me keep my guts un-chucked, we used Zofran and a Scopalamine patch then waited the full 30 minutes before administering the DHE. Most times I still threw up, it’s the luck of the meds I guess. Honestly I frequent my local hospital so much and they pump such hard drugs into my veins that they might as well just give me a Port…ya right, in my dreams. Because they won’t do Port-a-caths for migraine patients even if they frequent the ER every month. Ignore my rant I get frustrated about my lack of good veins.

On to good news. My neurology appointment is tomorrow and I have billions of questions to ask her.  I’m going to ask her about my neck pain and cervical instability, my seizure variant episode, hypovolemia and how it could affect my migraines while on my period, do I need a MRI since I’ve never had one, and memory testing because I literally can’t remember shit.  I’m also really sad because I might be leaving this neurologist soon, it all depends on whether or not she’ll see me until I’m out of high school. It’s just so stressful trying to find a neurologist under my insurance I really hope I can stay with her. Well, I think I’ll end here for tonight so happy readings y’all.

Help, I’m Drowning

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 ❤

Long Time, No Blog

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.

Keep On Keeping On

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.