4 o’clock in the Morning

Whelp, it is indeed 4AM here in Arizona as I sit here typing this out. I didn’t sleep hardly at all, maybe two hours at the most. I had a horrid migraine yesterday and slept most of the morning away. That afternoon though I sorted out some of the insurance kinks with my getting in to see a surgeon.

I’m sorry I haven’t updated you guys about this it was just kinda a lot to take in. OK. On November 7th I had a Metabolic Stress Test performed, these results showed that I am deconditioned (duh). They also showed that I have PVC’s, premature ventricular contractions, (extra heartbeats) that are continuous throughout the exercise period (they also are consistent with my daily living and are showing up on the 30-day Holter monitor I’m currently wearing). Most importantly this stress test showed my symptoms, the fainting, shortness of breath, palpitations, chest pains, racing heart, etc. aren’t all caused by my deconditioned state. Something else is wrong. Right now we are blaming my Pectus Excavatum; the way that my ribs dip inward to create a short of pocket when they meet at my sternum. Now mine’s nowhere near severe as the ones I’ve seen (mostly in Marfan Syndrome peeps), but I’m a lady and well, boobs. They kinda obscure the severity. This is why I’m making an appointment with the surgeon.

pectuschest

I am calling to schedule an appointment with a surgeon at PCH so that we can discuss what will be the best type of testing and scans to proceed with to decide if I am a good candidate for the Nuss Procedure. We wouldn’t want to do anything unnecessary like say two CT scans mere weeks apart since we didn’t get the right depth the first time. I trust my cardiologist for referring me to the surgery clinic and would much rather keep it in the Hospital than have to go to Banner and possibly need to see Their surgeon, plus Their cardiologist for referral to the surgeon, plus Their primary care for pre-op clearance etc. It’s much better and less stressful to keep it in the PCH family since their records are as easy to pull up as Facebook if your in network.

Onto the Nuss procedure. In laments terms they’d be sliding a bar into my chest through two incisions on the side of my chest, this bar would pull my ribcage out and hold it there for a specific amount of time determined by my surgeon. After that amount of time, the bar would then be removed through one of the same side incisions. My chest would be a normal bell shape and all would be good, my symptoms relived or greatly diminished (since I still have low blood pressure when changing positions and exercising, the procedure would not alleviate the symptoms related to that). It is minimally invasive, I would need an epidural catheter and believe me those look very intimidating. It would be a 7 day hospital stay max if my pain wasn’t easy to control ( I pray that it will be, but my body is a sucker for pain and pain meds don’t always do it for me) And I would be sent home with exercises to do and told to keep my posture near perfect. I’m actually hoping that this procedure would help my posture, I’m thinking it might be causing me to slump and roll my shoulders forward because my chest isn’t out straight and flat.  Who knows, there are many potentially benefits to this procedure, we just have to find out if it’s  a right fit for me.

Rough Go Of It

I send my sincerest apologies as for the past month I have been extremely unwell. The first week of October was my first week of fall break from school. I was just generally run down and feeling drained. A migraine was bound to happen from my interrupted sleep schedule and it came and went at its leisure throughout most of fall break which ran until the 18th (almost 20 days of break awesome!). My sleep schedule now consists of taking at least 45 minutes to an hour to fall asleep and waking up at least 3 or 4 times, sometimes 5, and then struggling again to fall back asleep. The last week of break and into the first week of school, I of course came down with a fever, chills, hot flashes, vomiting, increased dizziness and fainting, the works. That lasted about a week and I was more or less bed bound and slept for the majority of the time to avoid the awful temperature changes that wrecked havoc on my autonomic nervous system. I missed the first three days back to school.

The fever finally broke and I was feeling good, but the migraine that comes anytime I get sick was still lingering. I decided that I needed to get it gone and attempt school, so we went to the ER. They gave me Dexamethasone and it worked. They believed I had a UTI and maybe that was what had prompted the migraine; they gave me antibiotics for it (turns out I actually didn’t have a UTI so I stopped the antibiotics). Also after a few pokes, the nurse had to get out a ultra sound machine just to find what she called my “baby veins”; they also used a baby catheter. I went home feeling pretty alright and at a good manageable level. This lasted until a bitter-sweet surprise landed in lap.

 

My neurologist called; my Botox appointment could be moved up because someone canceled! How sweet! So Tuesday the 17th was scheduled and I was ready to try something new to get rid of my migraine plague. I went to school Tuesday and a few morning classes on Wednesday. Then it was off to the neurologist! The Botox was done, we left, and a few hours later I noticed a slight headache coming on; I ignored it and figured it was from the needles and such. The next day I woke up with a pounding migraine and could barely move, this was not good. The migraine lasted a long time. A few days later a stiff neck set in, so sore I couldn’t turn my head and had to turn my whole body to look at something. The migraine makes my head feel foggy and like I can’t think straight, so homework and school don’t really work. I mean sometimes I stop mid sentence and stare at you for a full minute because I genuinely forgot what I was talking about while I was talking about it. I missed the rest of the week of school.

We headed to the ER on Sunday afternoon to try to give me some relief; I had already maxed out on my home rescue meds. This time the nurse took one look at my (non-existent) veins and brought in the ultra sound machine BEFORE poking me. She also agreed my veins were small and hidden away. They give me Haldol this time and it worked decently. It helped and I was able to go home at a reasonable level. It lasted about two or three days. Again. I went to school Monday and went about trying to catch up, stressing about some of my more in depth classes like Anatomy and College Algebra. and Tuesday I was pulled out half way for my new cardiologist appointment. My new cardiologist is amazing but we will get into that later. So I again didn’t make it through a full week of school; missing Wednesday, Thursday, and Friday to much dismay. I am now very much stressed and frustrated that my body is not cooperating with my educational goals. I am however still on track to graduate, it just may be a little different schedule unfortunately.

On to my new cardiologist. I really like him, he seems knowledgeable and invested in helping me feel like myself again. We had real conversations about my life and his experiences with other circumstances similar to mine. We connected on a personal level; I already trust him. Right away he put me on a 30 day Holter monitor, as he says ” a 24 hour monitor scares away arrhythmias”. We meet again in two weeks where we will discuss if we need to change meds, start an exercise program, and where I will talk to him about the possibility of IV saline infusions as a treatment option if he has no other medications or treatments to offer. I really think the infusions could be helpful as they increase blood volume and help with dehydration; that’s a huge problem when I get migraines as well because my nausea is so bad I can’t hardly drink. My new cardio said I have Neurocardiogenic Syncope, the infusions could help with the near constant dizziness and chronic fainting and blackouts that come along with that by pumping up blood volume and helping with my blood pressure when it drops. We will see what plans he has, and what test he wants to runs, and what steps he wants to take. I believe we can work together and find answers and treatments.

So again, I’m sorry I left y’all hanging for a while but chronic illness is unpredictable. You never know when you are going to flare or have a series of bad days. So I hope I got y’all caught up and I will attempt to go back to regularly scheduled blogging. Thanks everyone for reading! 🙂 ❤

Going Somewhere (Maybe)

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.

Plans And Answers (plus birthdays!)

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.

18thbdaypresent

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.

 

 

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.

mri

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.