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! ❤

 

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! 🙂 ❤

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 ❤

Cardio Appointment

orthostaticWell my cardiologist appointment went decently, I got some answers but they were mostly what I have been told before so it’s not anything enlightening. Basically I was told that, and I quote my doctor, I ‘almost have Postural Orthostatic Tachycardia Syndrome’ He said I have all the symptoms except for the fact my heart rate only goes up about 20 beats when I go from sitting to standing as fast as I can. People that have POTS have heart rates that usually go up about 40 beats or so. I’m glad I don’t have POTS, but I’m frustrated I still don’t have anything to put my finger on and say ‘that’s why I feel so dizzy and nauseous today’ But I may have to come to the realization that I may never have solid answers. I have been told by many doctors that people like me who have chronic dizziness and fainting, sometimes just have chronic dizziness and fainting because that’s the way their body works. Now that sounds like a loud of it to me but hey, I haven’t studied medicine for umpteen years. So to remedy my symptoms hopefully we are trying a new medication that raises my blood pressure. I’d really rather it not do this but I trust my doctor and it’s the only type of symptom relief that won’t interfere with my other meds. I’m also transitioning from Pediatrics to a regular Cardiologist in the next few months; stressful enough as that is, I’m excited because I will be able to get a second opinion on my condition which always seems to give me a bit of comfort. More updates will come soon as I have a upcoming Neurology appointment this week.