Tag Archives: health

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When Someone Else Gets an Autoimmune Disorder

Irony is amazing isn’t it?  I mean, the very people who blow you off when you casually mention the fact that you have an autoimmune disorder that will affect the rest of your life are sometimes the very people who … Continue reading

Not Quite So Far Into Remission

So, here I sit.  Austensibly, I’m working.  Scripts are running.  I’m keeping an eye on what is running.  I’m getting ready for a move of the current enviornment to the almost latest and not exactly greatest technology that will get us by until a year or so from now.  Knock on wood.
I smell like Tiger Balm.
I’m thinking… contemplating… the fact that I’m probably going to be adjusting my MTX back up from .8 to 1 cc starting next injection.  I’ve been feeling my fingers and toes starting to ache and be stiff (okay, okay, technically “starting” might be a bit of a stretch) more and more.  I’ve been wearing Tiger Balm under my fingerless gloves… I don’t see any extra lumps and bumps.. but I’m feeling like I’m using my fingers and toes more gingerly than I have been of late.  So… I think going back up a little on the meds (as the doctor suggested I might) is my next step.  Probably should call the doctor and let her in on it… but… it is what it is.
I’m kind of sad thinking that I’m not doing any better than I am right now.  I’m going to put myself through some less than exciting loops and jumps tomorrow at soccer practice.  I will probably regret it after Saturday’s game but it’s all wonderful fun and that is a good trade off.
I’m viewing the resent events with mixed feelings.  I have liked the idea of not having to take as much of the chemo poison every week, but I like not aching even more.  So, we adjust. I guess I won’t be finding my hair growing back any time soon.  So, I keep a few bobby pins so I can use them (one at at time) to hold my thimble sized bun… and my BUffs… and I keep thinking… and keep dealing with the brain fog/chemo brain.
The adventure… continues…

On Making A Difference

Today, I feel really really good.  I realized that I can make a difference… even if it is a small difference… it is a difference and it feels really good.

I was walking back to my little hovel from the break room.  The janitor (ALWAYS such a chipper man) stopped me and asked me if I was the motivational one in my team’s office who has been putting up the motivational sayings on the cube walls on post-it notes.

I looked a little sheepish… I have gotten in a little bit of unofficial trouble by posting them in the “wrong” places before… and admitted they were mine.

He teared up and thanked me for the ones that are there today.  The one in particular really struck him hard and made him think and made him smile.

Blessed are the cracked for they shall let in the light.
-Groucho Marx

He said that I need to keep that up and start putting them in other places because everyone needs a little sunshine in their lives, a little motivation a little smile to make them feel a little less sucky.

It made me smile.  It made me realize that maybe I do make a difference for the people I work with and around.  Maybe, just maybe, the people who make fun of me all the time are a little bit wrong…

EBMD One of RA’s extra special gifts

SO…. I’ve got RA and Sjogrens and Raynauds.  They kind of all play off on each other.  RA is primary, the other two kind of are just co-existing conditions.  These kind of affect me to one degree or another pretty much every day.

My RA is pretty much currently controlled.  Yeah,I’m on an obscenely expensive cocktail of meds, and I get tummy shots every week but it is a pretty decent trade off at the moment.  It means I’m in reasonably good shape for the most part and I can hide my rather thin hair with my rockin cool Buffs.  Can’t hide the chemo brain so much, but I’m trying to determine the best way to get around that.

OH… and something weirdly new… since my hysterectomy… I’m having hot flashes… which is wicked cool because my feet are freezing (Raynaud’s) and I’m trying to figure out to keep my tootsies warm while mitigating the hot flashes.  In the next couple months that should start to take care of itself.  I’m not supposed to take hormone replacement because it can lead to an increased chance of cancer in a body that is already having an increased chance of cancer (thank you RA) so I think I will keep on taking methotrexate to keep that at bay too… I look like a real goofball walking around in shorts and a tank top and fuzzy warm socks.  I’m SO glad I’ve never cared a whole lot about fashion… I’m a honey badger!

This week I had my annual eye exam with my Ophthalmologist.  I always kind of view this with mixed feelings.  He’s… eccentric.  It’s late summer and he always whistles Christmas songs.  He has an incredibly interesting sense of humor.  He also tells me the ongoing saga of my EBMD.  Epithelial basement membrane dystrophy (EBMD) is this weird ass condition where the cells of your eye get all loose and weird and can stick to your eyelids in the morning when you wake up, your eyes can hurt a lot, you can get way blurry vision…. blah blah blah.

This medical explanation is pretty good if a little… medical…

The corneal epithelium produces and adheres to its underlying basement membrane. Corneal abnormalities associated with map-dot-fingerprint dystrophy are the result of a faulty basement membrane, which is thickened, multilaminar, and misdirected into the epithelium. Deeper epithelial cells that normally migrate to the surface can become trapped. Epithelial cells anterior to aberrant basement membrane may have difficulty forming viable hemidesmosomes and basement membrane complexes, which attach to the underlying stroma, resulting in recurrent erosions. Irregular epithelium centrally can cause decreased vision.

It is exacerbated by dry eyes… so, while it may have existed independent of my RA… it never showed up until… oh… about 3 months before my advanced case of RA was diagnosed.  Coincidence?  Yeah, probably not.

I’ve been kind of trying to dig, but I can’t seem to find anywhere that links or discounts the link between the two even as kind of… well maybe that would make it worse… kind of thing.  One website shows that EBMD might help to diagnose Sjogren’s … so maybe…

So… I’ve been on Restasis for a couple years.  Apparently it isn’t helping a whole lot.  I’m not getting another prescription for that… now… it is a matter of just keeping my eyes as wet as I can.  Tear replacement drops (over the counter) and something that isn’t quite over the counter but what they are telling me is BEHIND the counter (kind of like cold medicine and cigarettes… hmmm) called FreshKote… Three times a day to try to rebuild my tears.  They kind of burn a little, I hope that means they are working… I’m glad that the pharmacy put the prescription through as a real prescription, because it looks like my insurance is going to cover it… which is good because $40 a pop for eye drops makes my brain hurt… but… whatever it takes to keep on keeping on, I guess.

Oh… and in about 2 weeks, I can pick up my shiny new glasses… Squirrel Girl has given them her stamp of approval… so… 😉 maybe they will be an improvement.

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Back to My Kind of Normal

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So… Here I sit, beneath the lightening sky. The morning star slowly fading in the dawn sun. Peanut is laying a short way away on the cool cement of the back porch. I wish I had my rocking chair out … Continue reading

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Rockin my Buff

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Okay, so… like I said, I like my Buff.  And I have been wearing it to work.  It has met with some very mixed reviews. I have heard that some people like it.  That seems to be what passes for … Continue reading