Conflicted

Well the MRI came back clear. And I really don’t know how I feel about it. I really wanted answers…but I didn’t want another diagnosis. I wanted to finally see what was causing my life to be an uphill battle but the truth was, there was no cause but life itself. We didn’t get the EEG results back so we have to ask about them Monday when I go for my cardiologist appointment. I don’t want anything to be wrong with my body, I want to be as healthy as possible. But being cut off so abruptly by those four little words, left gripping a trailing list of unanswered questions … that just feels unfair.

This hopefully will be my last appointment with my pediatric cardiologist as we are trying to schedule a PCP appointment to get a referral for my adult one. At this appointment I need to discuss how the medication that I have been on for 6 months has been doing a whole load of nothing since I’ve started it. Maybe this time when I have my mom who is comparable to a pushy lawyer in these situations and definitely my savior, my doctor will actually listen when I tell him the meds don’t work. I also need to discuss how my symptoms have increased in intensity and frequency. They have done this gradually over time since the last few times I saw him and are now at the point where it’s becoming unmanageable. More tachycardia episodes and faster heartrates when they occur, more near-syncope episodes and actual fainting, more, near constant dizziness and falling, and that disgusting feeling of nausea, fogginess, and overall ugh feeling when my blood pressure gets too low which is almost all the time now. I really hope we can make some progress before we leave and can transfer to my adult cardiologist feeling confident that we have a stable plan. I’ll update you guys when I get the EEG results and after my cardiologist and pain clinic appointments!

Nervous but Excited

School started this past Monday and the week leading up to it was a bit chaotic. My week went a bit like this: School shopping for adorable supplies (this takes forever since I’m very anal about organizational supplies), take a few hour break. Find clothes that are dress code appropriate since I haven’t had one in 2 years, break. Organize backpack and pick out first day of school outfit, break. This made the process last a few days but we did it and I got cute and organized! I’ll admit it’s hard to go back to a school schedule where every hour you’re doing something completely different. It’s annoying to have to be conscious of what I’m going to wear for the day especially since it’s triple digits here. It’s stressful remembering all my teachers names and wear I sit for each class and how to get from 2nd hour to 3rd and from 2nd to 4th instead on block days. But I made it! It’s Saturday and  now I’m relaxing, working on some projects due later next week, and making my best friend her birthday card. My plan of action is to go to the nurse during lunch in which I lay down in the Sick Room, close the door, leave on only the warm colored dim lamp, and rest. This gives me 20 minutes or so of in and out napping and laying flat that helps to reduce my headaches and take some pressure off my neck for a while. My nurse is amazing by the way! She’s kind and helpful and if a situation were to arise where you were being taken advantage of, she’d back you. She has helped me some much these last few years, she even helped me realize what I truly need is an IEP to help protect me when my cognitive functioning isn’t at it’s best.

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My neurology appointment was also the week before school started. We talked and decided the best route was to do and EEG and an MRI to cover our bases and for when I transfer to an adult neuro. They are both this Monday and I’ll admit I’m nervous. My suspected sensory processing disorder could be thrown into overload and I could potently have a panic attack and that would not be good. I also have to be running on only 4 hours of sleep for the EEG and I still have to go and function at school. That’s what is really making me anxious. Though I may be able to handle it since me sleep has been declining these past two weeks. I went from waking up occasionally, to waking up 2 or 3 times, now I’m waking up up to 5 times a night. I even had a terrifying sleep paralysis episode. I haven’t had one in a very long time, probably over 6 months. But I feel excited for results and a new plan of action. I’ll write a post once I get the results and once we figure out a new way to handle them if need be. For now I’ll see ya’ll soon!

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 ❤

I’m Back!

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.

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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 ❤

Ready for Relaxation

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.FullSizeRender

A Little Work, A Little Pain

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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.