The Body of My Soul

TW: weight loss, body image talk

Today I stepped on the scale and began to cry as I watched the numbers settle, barely reaching 100. I looked up into the mirror. Avoiding eye contact with my tear streaked face, I scanned every inch of freckled porcelain set against the coffee colored backdrop of the bathroom walls. My waist was drawn in as if someone had tied a gift bow around it too tight. It gave the illusion that I had some curves, ‘hips’. If you were to touch them, all you would feel is bone. My ribs pushed at my skin. Every time I took a breath they pushed harder, trying to find a way out. My collarbone came to two peaks in the front of my chest, the hollows they created almost as deep as the ones under my eyes. My eyes; always they have battled with my sense of ‘normalcy’. A normal, healthy person does not look like they went 12 rounds with Muhammad Ali everyday. I had even gotten 10 hours of sleep the night before. It looked as if I were wearing a smoky eye; my lids naturally an exhausted orangey-brown. Underneath were a mix of greys and browns so dark they treaded on black, feathered in were unhealthy looking blues, purples, and reds.

I could go on and detail every little aspect about my body that emphasizes the fact that my BMI is 16. I’m not going to.

When I finished noting my dark circles, I stopped. At this point in my obsessive breakdown I had been sobbing; shudders running through my body like electric shocks. I met my own gaze. I stopped crying. I pulled my clothes on and came straight into my bedroom. Pulling out my laptop, I began to write. I began typing this very blog entry, because God knows you can’t stand around all day deconstructing your body’s entire physical state (that you have absolutely no control over). But you can do something with those feelings and thoughts. Put ’em to paper and at least they stop banging on your skull for a bit.

I am terrified for my future at this point. I honestly am scared. I don’t know how I will survive if I keep losing weight and become a weak, shell of myself. This is chronic illness. On top of my carpet bag of other BS, there is this. This may very well be a problem I deal with for the rest of my life. I have been dealing with it for my entire life! Since I was born my GI tract has never cooperated with me. Causing me so much pain, making me miss out on fun times and opportunities.  And no one has told me anything; what is wrong, what will help, how to cope. I pray hard everyday this new GI doc will be different. God I pray he is. I need answers or a finger pointed in a direction at least. I chose to tell myself that no matter what my outside may look like, I am still me. I have no idea where I saw this but it read “You don’t have a soul, you are a soul. You have a body”. You are you know matter what. Scars, tubes, lines, negative limbs, assistive devices, services dogs, any weight; you are a person with a mind and personality no different than if you were a blank, neutral slate.

I never do any of this for pity or attention. I do this because I need to. Talking things out, even to an anonymous audience is therapeutic in  a way. Gets things off my mind and on to paper. Who knows someone may be fighting a similar battle, reads this, and finds solace in the facts someone out there is having ups and downs just like them. That they are not alone.

 

 

 

The Road So Far

TW: GI symptoms and weight loss

Three years. Three very stressful, tearful years filled with fist-shaking, heartbreak, regaining of hope, and still very few answers. Today marks three years since the mild traumatic brain injury that changed my life and disabled me.

The TBI gave me crippling migraines. For almost two years I had a headache that never went away. I have on average 20+ migraine days a month with symptoms like photophobia, sound sensitivity, nausea, vomiting. I had to take a year off school then go back with online and homebound because on-campus was just too much. I completed one semester on-campus this year but am going back to online and homebound because it has gotten to be too much again. I am already getting a tinge of relief since I have been on winter break. At least I am learning my limits and I know when to stop myself before I push to far (at least migraine wise haha).

Through the TBI other symptoms began presenting themselves, one of them being extreme dizziness and unsteadiness. I had to go back and redo vestibular therapy after graduating it at the concussion clinic because my symptoms came back after I weaned off my exercises. Since graduating that and having the same thing happen but having already been released by the clinic, we brought it up to my pediatric neurologist. She referred us to a cardiologist because she though I had Postural Orthostatic Tachycardia Syndrome based on some other symptoms I had been experiencing. Those symptoms being chest pain and a recurrent racing feeling of my heart, especially after I would go to lay down after activity, and a few fainting episodes.

My neurologist also referred me to a geneticist for suspected Ehlers-Danlos Syndrome, a connective tissue disorder based on some constant joint popping and cracking, pain, and subluxations. While waiting on my genetics appointment my cardiologist discovered that I had something called a Pectus Excavatum, a sunken chest. The Pectus, he believed was worsening the symptoms of my Dysautonomia, a dysfunction of the autonomic nervous system causing dizziness, fainting, nausea, brain fog, and so much more. We have not done a tilt table test so we aren’t sure of the specific form as there are many types of Dysautonomia. But a Pectus chest correlates with some connective tissue disease traits, so we sent of a sample for a gene test for a few different connective tissue disorders and diseases.

I have yet to see a GI doctor, but am awaiting an appointment for one. The list of GI symptoms is a long one. The main one being the persistent, daily nausea I experience on the daily along with the throwing up of undigested food days after I have eaten it. Between approximately September and October I lost over 20 lbs. I have fluctuated a little since then, hovering around 108 lbs but dropping to as low as 100 lbs and never getting over 115 lbs. (I only stayed at 115 for about a week and I believe that was around thanksgiving lol) I am 5’7″ and 120 lbs is what I would consider fairly decent for my height and build, so when I lost all that weight it really affected me. I became weak, even more fatigued than usual, I am extra freezing (so much so my hands would hurt) , and I am hungry…but the thought of food made my stomach hurt and me want to vomit.

A serious issue that has been a concern of mine lately has been my back. I have had back pain since the concussion from being laid up in bed all the time, but over the past year it has increased significantly and I have had a few scary episodes. I now have copies of my cervical, thoracic, and lumbo-sacrial spine and will have my primary care look at them asap. I feel something is wrong even though the report says everything is clear. It hurts way too bad for nothing to be wrong and I do already know I have mild scoliosis which they did not note. I can barely stand for more than a couple of minutes with out being in pain and many positions are just plain uncomfortable. Hard backed chairs like dining chairs suck,  plain and simple.

I struggle with these symptoms everyday, I take 11 medications and supplements for them… it adds up to 20 pills a day. But in a way I am thankful for the concussion for shedding light on these issues that may not have appeared till way later in life or caused me to suffer undiagnosed and unknowing. And many would, by then, have caused more harm to my body. I just wanted to give a run down of everything as a little life update sort of. Here’s to many more years post-TBI and hopefully some more answers and relief. ❤

In a Not So Neat Little Bow

 

Well the year is coming to a close and it feels like my life is a complete disaster zone. The week before Christmas and part of finals week I was sick with a nasty cold. No big deal right, take and Advil cold and sinus and get on with it…not. That hardly touched it and of course it brought on migraine. That was a no -so- fun study buddy during finals. But I made it out alive and with good grades to boot (besides missing 5 days of school 2 weeks earlier).

The cold stuck though. I got pretty much nothing done for the next week. But, I felt pretty good on Christmas Eve and Christmas. Just sniffly and headachy a touch, the cold was nearing the end of its run. Yay! I had a lovely evening at my grandma’s on Christmas eve and we did dinner and presents and everything. The next day at my aunt’s I had dinner with my mom’s side of the family and while I didn’t eat a ton it was delicious as always. Overall, it was a good Christmas and I got to spend it with the people I love and enjoy the wonderful holiday relaxing and having  good time. The next day though I woke up feeling not quite right, my GI symptoms were flaring (bloating, cramping, pain) and a blanket of nausea covered me the entire day. I got some things I needed to get accomplished done and decided to nap the rest of the day on and off. I ate a small bowl of macaroni and cheese and had a glass of milk around 3 after taking a promethazine and was starting to feeling better. I watched a bit of the latest Resident Evil that evening, decided it was a little to well-made for me, and instead fell asleep watching the Lego Batman Movie around 10:30pm. I was asleep for only an hour went I sat straight up and knew immediately that the nausea was going to take it to the next level. Luckily I had just put a new bag in my trash.

Ahhh, yes the joy of spending half the night on the bathroom floor, slouched against the wall, tear stained checks, surrounded by waded up toilet paper. No this isn’t a break up cry-fest. It’s the reality of having GI disorders(or in my case being an undiagnosed mess lol). It’s not being able to take your daily pills because you know they will come right back up. It’s losing so much weight in a week your family takes notices and starts to worry more than they already have been about your declining weight. It’s waking up every few hours like I was doing the day after Christmas and having your body try to empty its stomach yet again, even though there is nothing left. And having the next week, even now, follow quite similarly; a flare. I haven’t been diagnosed with anything officially. But my whole life I have struggled with a multitude of Gastrointestinal issues. It sucks when a doctor looks at your x-rays and says “Well ya, your colon isn’t supposed to do or look like  that…Here have some Miralax” or when no anti-nausea med seems to work except for the one that makes you groggy and fell ‘out of it’ like Benadryl does.

Its frustrating, yes. But I have hope. I have a referral for a new GI doctor and am making an appointment after New Years. Even my geneticist told me based on our discussion and her evaluation that a gastric emptying study would be highly beneficial to my case. I pray we can find some answers as we are also scheduling with an electrophysiologist that my cardiologist referred me to for a tilt table test. Lastly, I scheduled my metal allergy testing and my chest MRI for the Nuss procedure, but genetics hit a snag and I have to resubmit a sample which I can’t send off till after New Years. Then it’s 3-4 more weeks till I get my results and then I can schedule with my surgeon to go over the results of everything, the logistics of the procedure, and talk surgery dates. Some setbacks, but we are making progress! I still have tons of other adult things to do after New Years that are giving me minor stress, but I can’t really handle it till a few days out so I am just putting it out of my mind till then. I hope everyone has a happy New Years and that their Christmas was wonderful! I will be spending tonight (New Years Eve) on the couch curled up with an ice pack and a lidocaine patch on my back, watching Black Mirror with my dad. Love and Spoons! ❤

 

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.