Chronic Illness Challenge Day 2

(Beware the post is long)

Now some of you might be wondering how these illnesses affect my ability to function and I have to be blunt and honest. All these things I have wrong with me really do affect me, and my ability to function. I’m not going to sugar coat it, just like any other human I have my bad days where everything looks hopeless and I wonder how I’ve made it this far. Those days are deep, dark and feel like they go on forever. Frankly it feels like my medications don’t work, the pain is sharper, I don’t get as much sleep and I’m so much more dizzy and nauseous.

But on good days, I walk more, I sing, I put on my hand and ankle splints and try and face the day like any other person. I know I have to pace myself and make sure I don’t hurt myself by trying to do too much at once. But on good days you just want to bask in the glory of how good you feel and how you could just take on the world.

But most days you have to take the bad with the good and hope for the best. I know that is easier said than done but I really try my hardest to accomplish the things that I know I can do on my own.

In general I don’t think that my heart murmur really affects my life a whole lot, though it has become somewhat more problematic here in the last year and a half. It has led me to be tachycardic almost all the time, even with the help of Propranolol. My heart rate without Propranolol would generally hang around 120-130 beats per minute. But with propranolol my heart ranges from 104-110 beats per minute. Still a bit high for a resting heart rate I know, but I have noticed a significant improvement since starting Propranolol.

The chronic migraines have been the trickier of my medical problems to deal with because migraine treatment is so delicate. I take a whole host of medications to prevent my migraines from happening. Currently my preventative pill cocktail consists of Amitriptyline, Gabapentin and Propranolol. And I take both the pill and subcutaneous injection forms of Sumatriptan both of which I would say work really well for me as of now. Though when I do get a migraine it does knock me down pretty hard if I don’t take my Sumatriptan soon enough when I start having an aura. The Sumatriptan pill puts me pretty down for the count for most of the day the pills make me extremely sleepy. Though if I take a Sumatriptan shot I can still usually function rather well.

I have been officially diagnosed with EDS for a little over a month now so I’m fairly new to the zebra world. And if you are a zebra then you know that EDS is just difficult to treat in general. My entire body hyperextends to a certain degree I’m not too bad off yet because I don’t use mobility aides. But I do have problems with ankle sprains/strains and just general ankle instability. And I feel like my knees have gotten fairly unstable. I’ve been looking into knee braces that provide my knees with support but still allow me to bend them. So if anyone has any suggestions for types of knee braces let me know. My other specific problem area are my hands all of my fingers hyperextend severely especially my thumbs.

I went and actually saw a hand surgeon a couple weeks after my EDS diagnosis and he prescribed me Siris Silver Ring Splints. Currently I only have my thumbs splinted because they are quite expensive. But trust me, it is worth every single penny I promise. I have the Thumb MCP Splint with the PVX add on. These splints are an absolute godsend. Before I got them I had constant pain in both of the MCP joints in my thumbs. It was extremely difficult for me to do even the simplest tasks, it was very hard for me to button buttons and grasp cups, even wash my own hair. The pain affected my life a lot and that’s just the short list of things that I couldn’t do because of the pain. But since getting the splints and adapting to my new limited range of motion my pain has dramatically decreased. And I can do a lot more things with my hands than I could before.

Meniere’s Disease I would consider my most annoying chronic illness because like EDS it’s really hard to treat and there’s no cure for it. I have gone to hell and back with this disease and I have fought it tooth and nail. As I have said before I have been officially diagnosed with this for about three years. I like to Joke that I basically see my ENT as much as I see my boyfriend and that is pretty frequently.

When I was first diagnosed he immediately wrote me a prescription for Vestibular Retraining Therapy. And for those of you who don’t know what that is, it’s comparable to some sort of torture. Though to put it simply you have to make yourself dizzy but it’s forcing you brain to adapt to the dizziness so it’s not as disabling when an attack of vertigo happens. That was an extremely unpleasant three weeks of therapy. And it ended up hardly helping me. We progressed from there to 2mg of valium everyday for almost a year, which we then tapered off to every other day. And then tapered off to an as needed basis. Then we tried oral steroids, which worked like a charm, better than the Valium. So we tried steroid injections into my inner ear, which oddly didn’t help at all. The only thing I have found that helps me is oral steroids every four to five months.

But the Meniere’s Disease has impacted my ability to drive. I’m not a hazard to anyone on the road by any means, I just don’t trust myself. I feel really unsure of myself when I drive at night mainly because the flickering of the oncoming headlights from the other side of the road make me very dizzy. Day driving isn’t too much of an issue unless it is snowing. Snow pretty much incapacitates me if it’s night or day but I would say that snow at night is worse than snow during the day.

The Asthma has made my social life a bit more difficult because I have to be cautious when I go to the mall or stores I know contain large perfume sections. Perfume or candles are my number one asthma attack triggers. I’ve dealt with this for so long that I have mastered the art of holding my breath and being able to run through the large perfume sections at the mall.

The knee/leg pain affects me more so in the winter when it’s extremely cold or days when it’s going to rain. If I know that I’m going to be at the mall when it’s cold out or when it’s going to rain I have found myself renting a wheel chair a lot of the time because the pain gets really bad. And I really have to be in a lot of pain for me to be able to willingly say yes I think using a wheelchair will benefit me.


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