My cardiologist appointment on Tuesday actually made some progress for once. And I was actually going to bail after this visit and get a new referral from my primary next week. But we got stuff done. First we went over the Holter monitor results. Other than a few sporadic extra beats very rarely correlating with symptoms, everything looked pretty ok. A few extra beat randomly spread out, I’m told, aren’t enough to bring on symptoms. There have to be multiple in a row to bring about physical signs and to cause concern. Next, we added a new medication that is going to help me retain salt and thus water. Hopefully, with it’s addition my blood pressures will stabilize and get out of the 90’s, up to where they should be. He also ordered (at my discretion) multiple lab panels looking into things such as Celiac disease, Lupus, and Juvenile Rheumatoid Arthritis. He doesn’t entirely suspect those things but my symptoms are similar and having a geneticist appointment in a few months, he asked me point blank whether or not I wanted to wait till then. If you have been following along you know that right now I’m grasping for straws. So we figured the information would be useful to the geneticist so that they could focus on ordering more specific panels and so that we could focus on narrowing down a cause for some of my cardiovascular symptoms. So a few pokes and six vials of blood later here we are waiting again, albeit resting a bit easier than those stressful MRI results. While I trust in my doctor’s call that I more than likely don’t have any of the aforementioned conditions, he told me himself that he simply doesn’t know 100% unless he checks. My body has been known to throw curve balls and I don’t want to get blindsided by one.
I know it has been a long while. I needed a little break and time to adjust to school in full swing. School has been crazy, I’ve had doctors appointments weekly including meeting with my new neurologist and setting up a 504 plan which will be a separate post, and physical therapy in between. Juggling a personal life with multiple friends turning 18 this month has also been another, but much appreciated calendar filler. I also turned 18 this month so I finally got my long awaited tattoo. It is in my grandmother’s handwriting. I opened the birthday card she gave me mere hours before we left for the parlor and had been struggling with what font I wanted. But I knew instantly that the word MORE (as in ‘I love you’, ‘I love you More’ ) written in her gorgeous cursive was what was meant to be.
Now, today I wanted to talk to y’all about prayers and how they came to be answered over the past few years and how I now know that everything in my life has happened for a reason. Answers to prayers can be difficult to hear sometimes. They may come in a whisper and you may be looking so hard for answers then, that you look it over like when your brain deletes a repeat ‘the’ or when you’re doing a word search and you swore that letter ‘t’ wasn’t there before. Other times a whisper may be exactly what you need to hear in your crazy chaotic life and it comes across crystal clear. On occasion there are the magnificent, grandiose moments where you just…know, and you are thankful and you praise His name. And in those same moments, you can go about your day blind, unseeing.
When I had my accident and received my concussion, I struggled quite a bit with answers. Those that have been reading my blog or know me personally can tell I have been through what seems like just about everything imaginable. People often assume I am doing much better now that I am back in school and participating in life more, I sort of am. Mainly because I have adapted amazing coping mechanisms. But before that, I struggled. A lot.
I was frustrated, depressed, irritated, confused and not all of it was from being elbowed in the temple. I think I actually went through the 5 stages of grief. I mean I cleaned my garage out the day after the hit, it was just a mild concussion right? Bam, denial. Then came the anger. At the girl that had hurt me, even though accidently, and at God. How could you let this happen? No answer. Bargaining came next. With my doctors it was ‘If I lay in the dark for 3 days completely, can I use my phone on dim’ or ‘When I do therapy, I’ll take a dance class also’. With God it was I promise I’ll treat my sister better, I’ll be more thoughtful concerning others and then I’d pray for health. No answer. Finally depression set in. I took time off school, some of my friends left not wanting to deal with the difficulties in managing a relationship with the new me. I asked God, Why did this happen? No answer. Why to me? No answer. I was abandoned by everyone I cared for, including the most important one. Or so I thought.
Now I have finally reached the stage of acceptance. I still struggle physically, emotionally, socially, and sometimes need a little reassurance that this was meant to be. But I know in my heart that this was His plan. I look back on those years of confusion, pain, and ultimately a derailment of faith and I see His answers were there all along. I was just so wrapped up in my self that I couldn’t see it. First off, it was time for me to grow. I needed a catalyst to get the motions rolling. This colossal event, my ‘burning bush moment’ as my youth leader called it, forced me to look in the mirror. I wasn’t sure I loved what I saw so I decided to change that. And to answer the ultimate question, the one most people have when something goes amiss? Because it was supposed to happen to me. Without this life altering event and the discovery of multiple chronic and possible chronic illnesses, I wouldn’t know my purpose and I definitely wouldn’t be sure of who I am. I give thanks and praise to my Lord and God, who has shown me my path and given me a purpose.
Keep your hearts and minds open and you will know when your prayers are answered. Even if they may take time to realize, give thanks and know you are loved.
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!
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.
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!
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.
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 ❤