Monthly Archives: June 2016

Stumped

I’m sitting here trying to compile a list to get groceries for my upcoming colonoscopy prep. I’m a picky eater, crazy picky, always have been. Mostly, the puffiness is due to a hypersensitivity texture and unknown food allergies and stuff like that, and has developed into a fear of unknown. I’m working on it. But it doesn’t help when I get slapped with super restrictions. Now I’m just staring at the list on the verge of tears wondering how I’ll survive. I realize if I drink water I won’t actually die, but I don’t know what to eat. Ugh. I’m not going to have any strength after this.

I’m going to have to post about it. I’ll have Dan document the diet portion of the prep.

Time for a Colonoscopy

As I mentioned at the beginning of yesterday’s post (The Personal Hell That Is My IBS), my GI is starting to suspect that my IBS may not actually be IBS after all. Why has he come to this conclusion? Well, for the same reason I am not completely shocked by his conclusion, actually: because I just do not respond well to any treatment for IBS that I get put on. For some reason, everything we do to try to treat my digestion problems just seems to cause me an entirely new set of issues. My system just doesn’t behave at all like it’s supposed to, to anything at all. Wonderful.

gastroenterology

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The Personal Hell That Is My IBS

Unfortunately, my gastroenterologist is now starting to suspect that my IBS may actually be something more than IBS. I have been dealing with my severe IBS-C for more than 20 years, so this is both not surprising and very frustrating. (Yes, I am only 26. I literally cannot recall a time in my life that I have not been constipated unless I was horribly ill and afflicted with diarrhea instead.) If I was told to name one singular illness that causes me the most negative impact on a daily basis, and that I have to most carefully plan my life around, I would choose my IBS. Yes, above the POTS that makes me so dizzy I can’t think straight, above the fibro that can make a gentle breeze feel like I’m being sand blasted, above the allergies that make my eyes feel like they’re full of sand, and above the asthma that can make me feel like I’m trying to run a marathon on top of Mt. Everest. My IBS literally runs my life and it is relentless.

gastroenterology

(Disclaimer: This post is going to talk about poop, just in case you hadn’t figured that one out; you might not want to be eating.)

What is IBS? Continue reading →

Another Cold

I somehow caught a cold again. For several days I’ve been sleeping forever (like, until 1pm). My GI pulled me cold turkey off the Amitiza, though, so I thought I was just having weird withdrawals. That was, until yesterday today.

Yesterday, I woke up and Dan bright me some cereal so could shower. In the shower suddenly it felt like my body was full of cement. Then attack of the phlegm. Then I realized I was feverish. It never improved. And I realized my throat felt odd. Eventually I noticed my tonsils were bright red and puffy.

Today, all the same but worse. Definitely sick. And I’m very explosive. And my throat actually hurts now and I have a cough. Not happy. Ugh.

Hopefully I’ll feel better soon.

Potential Silent Reflux

The last several weeks, I’ve been absolutely miserable with allergy symptoms: crazy amounts of phlegm in my nose/sinuses, crazy amounts of post-nasal drip, even more intense nausea than normal (probably from swallowing all the phlegm), extremely itchy skin, itchy eyes, itchy ears, itchy nose, etc. It’s been extremely painful actually.

So why all the symptoms? I just assumed it’s because EVERYTHING is blooming. There is so much cotton blowing around (from cottonwood trees) that it looks like there was a giant pillow fight somewhere; the cars have been yellow for weeks thanks to the amount of pollen in the air.

Pollen Death

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Genetic Testing

I have decided to do genetic testing for Ehler-Danlos Syndrome, even though I know that EDS Type 3 (Hypermobility Type)  doesn’t have a genetic marker. However, when I look at the list of typical symptoms for classic EDS, I have a lot of those too, so I want to be sure I don’t have that one. I do fit EDS Hypermobility Type far better, but I want to know for sure.

So I called my rheumatologist, who had mentioned giving me a referral to a geneticist if I wanted to pursue testing. He sent a referral over to the geneticist and when I got the phone call, I find out they are the ONLY adult geneticist in the entire state of Colorado! Because of that, the wait to get in is obscene. I am on the calendar and now I’m on the wait list, just in case an opening appears.

My appointment?

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My New “Niece”

One of my best friends just had her second little girl yesterday! I’ve know K.C (the mommy) since I was 14, and we’ve been very close ever since. I am so very excited for her! I am doing everything I can to figure out my health enough so that I can hopefully go visit her at the end of July, because she lives in another state.

chism family

(watermark is purposefully very intrusive so you cannot steal the adorableness)

At least they’re one little burst of sunshine in this horrible pain cycle I’ve been stuck in!!!! I’m so happy! I cannot wait to go see them all again, it’s been far too long and her older daughter has grown so much!!!!

Obviously, I put “niece” in quotes in the title because K.C and I aren’t related by blood. However, since we’ve known each other so long, and we’re so close, we do think of each other as sisters. She does consider me to be an aunt to her daughters and I will think of her as an aunt to my children when I have them ❤ I love her and her little family and I just wish they were so much closer so I could spoil them as much as I want to!!!

Full Body Headache, Or So It Feels…

My entire body feels like it has a migraine. I’m in so much pain today. My back is STILL shot. I thought after Pilates yesterday, my back would feel better, but I can’t seem to get ahead of this. My fibro pain is almost always first prominent in my hips, so I’m pretty sure that is why I’m just stuck in this cycle. The daily migraine also hit REALLY early today, and I was struck down by about 11am, when I woke up at 10am. Ugh. I have been lying on the couch, with the room dark and the TV on VERY quiet just because my ADHD makes me really bored if I’m not doing anything at all. I finally had to call Dan at work because the waves of pain were too much, and then came to the realization I absolutely had to take Tramadol and Excedrin (an hour apart for my poor stomach). I had buttered noodles and Ensure for lunch, and my stomach is still killing me despite Zofran. No idea if it’s the medication or the migraine or the pain or a combination of everything or something completely different. I can barely think and I feel horrendous. I’m so sick of lying on the couch. I’m so sick of headaches.

pills and couch june 2016

Daily pills (AM top hand, PM bottom hand), and my usual place and position of lying on the couch.

Why I Haven’t Been Posting: Migraines & Pain

Today is the first day in a VERY long time that I haven’t had a migraine by this time (5pm). I have been suffering from nearly daily migraines for weeks, and denying it. Denying it with excuses: “I’m on my period, I’ve always gotten them every day of my period week” (pretty much true), “my allergies are just really bad, so it must be a crazy sinus headache” (obviously, I like lying to myself as well as Dan), “I’m tired,” “I have eyestrain,” “I can cope,” etc. However, after my back seized up and my pain went out of control, I couldn’t deny them anymore. I finally called Dr K (the neurologist that had given me the medication that is supposed to be stopping my headaches and controlling my pain) and left a message with his medical assistant. Hopefully, I’ll hear back and either be able to get in with another appointment or be told to raise the dosage and the headaches will stop. I forgot to mention the side effects on the message though, ugh. I didn’t realize that until I was typing this out.

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