Category Archives: rheumatoid arthritis

Methotrexate Shots

It’s Friday.  Today was supposed to be the first time I gave myself my MTX shot in my stomach.  I sat on the commode for half an hour trying to “just drop the needle into the stomach”.  In the end, I was a weenie and I just couldn’t do it.  I’m not proud of this but it is what it is.  There was just something in my head keeping me from sticking myself.  Adam is sure that next week I will be able to do it.  I’m not so sure.  I do know that bear was my hero.  I handed the needle to him and he just… gave me my shot.  He said he was just thinking… it is a pin cushion… it is a pin cushion.  He made sure that I got the medicine I needed.

I SO don’t understand how anyone who doesn’t HAVE to do that to themselves can willingly stick the shiny little needle into their body on a routine basis.

Now, this week’s meds are done.  Yeah!!!

Amandya is asleep upstairs on her floor.  I’m not sure what it is about her floor, but she seems to like sleeping there.  It might just be that she doesn’t want to clean off the bed.  Whatever it is, she is curled up under her fuzzy Marine blanket (I bought yardage last year at Walmart for her… half of it is on her wall, the other half is her blanket).  She came home early today.  Her side hurts.  Her left side… not sure what is up.  I’m hoping rest will help.

Graces September 24, 2010 … Day 8

1.  Having someone I trust to give me my injection
2.  Getting a hug from someone who doesn’t “do” hugs… just because
3.  I made the day of the lady in the coffee shop in the lobby when I told her she looked good and had lost weight
4.  Realizing that maybe I do have a message and that it would be good to get that word out
5.  Planet Green.  I love the programs that are on Planet Green… 30 days… Beekman Boys… Everest… they may not all be like my life, but they are all life and they all talk to me.

The Customer and the cutomer’s doctor are always… wrong???

Hello

Is April there

Speaking

Hi this is <bbbllllaaahhh bllllaaahhhh bllllaaaaahhhh> pharmacy.  Did your doctor call in a prescription today for inject-able methotrexate?

Yeah… <lets forget for JUST a second that I called YOU an hour ago and you were clueless about said prescription and lets pretend you care about your customers in this ever so wonderful economy>

Is there some REASON your doctor called in methotrexate that is preservative free?  Are you like allergic to something or anything? <first… guys shouldn’t use like unless it is a simile or it is actually LIKE something… valley girl doesn’t really suit some people… Second… I didn’t call the damn thing in, my doctor did… why are you asking ME why my DOCTOR did what my doctor did>

I don’t know.  Probably because that was what they wanted to order?

Well we don’t carry that. <implication… we will NEVER carry it and you can bite me… ha ha ha>

Does anyone in the area carry it?

No.  They don’t make it any more.  We think you should take the preservative methotrexate and we will call your doctor tomorrow to have this fixed. <WHAT?  YOU don’t think I need it?  Maybe there IS a reason?  MAYBE, just maybe I have an auto-immune disease and there is a reason?  Who are YOU to PRESUME to prescribe to me>

Whatever you have to do.

beep… beep… beep… beep beep beep beep

Hello <OTHER pharmacy>?  do you carry perservative free methotrexate?

Yes, we do.  Is there a problem?

Do you have any in stock?

Yes…

Can you transfer a prescription from <pharmacy down the road>

Yes we can.

good… please do

okay, will be ready in an hour.

REALLY?

Yes maam.

——————————————————————————————

Wow… a pharmacy that isn’t planning on arguing with my doctor about what my doctor prescribed… just because they didn’t like the prescription.  Novel concept.

I can’t believe in the economy the way it is today… that they can drive away customers just because they don’t like what my doctor says I”m supposed to take.

Is it impolite to tell a pharmacy to bite me?

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FALL!!!

Okay, it isn’t fall like fall at home, but it is finally starting to be fall.  It is Sunday… that means it is time for our walk… home to Walmart (today we bought alcohol and 2 inch gauze pads and … Continue reading

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Graces day 2 of 365

Today… these are easy… My “winter” barefoot sandals slash sandal/flip-flop cozies Cutting the grass in my bare feet and it feeling wonderful (despite the fire ants that I pissed off…) Home-made pumpkin spice coffee creamer The tree in the easement … Continue reading

Friday Morning Thoughts… The RA adventure continues

Sitting here… it is my pager comp time day off.  I’ve been awake since 3 am thinking… worrying… stressing (yeah… this will help the ouchies, more stress).  Peanut is asleep at the end of the bed, her fuzzy white legs twitching.  She’s apparently chasing the rabbits in her dreams, even though people who are able to see what dogs dream believe that can’t happen… whatever… she’s chasing her rabbits.

Today bear and I “get” to go to Dr Stephanie’s office to learn how to give me MTX injections.

In my head, I know that other people do this every day (like Vaughn used to before he got his insulin pump).  They are little needles.  Lots of people do it.

So why am I scared?  Why am I stressing?

Restasis

well… Here I am… Restatis and my second dose.  They come in “individual”  use package s… 30 uses in a box… 2 boxes a month.  The pharmacist said try to make one tube do both eyes and if there is any left in the package when you are done, throw it away (THROW AWAY $250 a month drops?  HELLO!!!!).  You put one drop (it ends up that it can be a BIG drop) in each eye.

The eye doctor said it usually burns (not like HIS drops burn… that is right away… these seem for me to be a slow burn that lasts about an hour… not an “ow ow ow” burn… more just like they are dry and tired anyway).  He said it will take at  least 3 to 6 months to work.  That is a long time… but then I think that MTX took almost 9 months to get me here… so it really isn’t that long…

The adventure begins.

This week I’m thinking so much more about how all of this really IS invisible to most people (with the exception of anyone who actually stops by here…).

My mom thinks I need to be WAY more visible (since there aren’t a whole lot of people who stop by here) and take up motivational speaking.  Maybe that is another door to look at…

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Left Foot Right Foot Feet Feet Feet

Today I was ‘warned’ via a team email that a big client will be in the office tomorrow.  We need to clean up our desks (line up my potato heads…. check… dust off my frames and shut the book shelf … Continue reading

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The Invisibilty Factor

Happy (I guess happy…) National Invisible Chronic Illness Week. Realizing that this is the week to make invisibility visible… I’ve been thinking about just how many people I know (or how many people I might know) who have invisible conditions. … Continue reading

Sunday Morning Thinking

I’ve been digging this morning.  It is pager week, so we aren’t walking… it is going to get too hot too soon and I have to carry a heavy laptop and its power cord along with the pager and cell phone.  So I’m taking the opportunity to dig into what Dr Stephanie and Dr B (the optometrist) have been talking to me about this week.

The MTX needles aren’t as big as the flu shot needles (got mine yesterday) and even with the cost of the MTX meds, it is cheaper than paying to park at the dr office along with the gas and wear and tear… so… I’m going to suck it up and do it for myself.

The eye doctor said that the Epithelial Basement Membrane Dystrophy (EBMD) is actually getting a little worse.  The erosion on my left eye is about twice as big but not yet interfering with anything, so that is good.  He is all for the Restasis drops… twice a day.  He asked me what the chances are of my changing careers.  Really?  I enjoy what I do and I don’t know what else to do other than be me.  I don’t know if I could change careers.   Add in that I have reasonably decent insurance (if they do make some silly rules on some thing) and we are more and more relying on that insurance.  Pretty sure I won’t be changing any time soon…

So what have I learned this morning…

What is Epithelial Basement Membrane Dystrophy (EBMD)?

Epithelial Basement Membrane Dystrophy (EBMD) is a genetically influenced abnormality, which causes small islands of the corneas surface (epithelium) to improperly bond to the underlying tissue. Similar to newly laid sod, these islands of unstable tissue are susceptible to frequent erosions. Although not typically sight threatening, corneal erosions can be a chronic problem. They may alter the cornea’s normal curvature, causing periodic blurred vision. They may also expose the nerve endings that line the tissue, resulting in moderate to severe pain lasting as long as several days. Generally, the pain will be worse on awakening in the morning, or during the night. Other symptoms include sensitivity to light, excessive tearing, and foreign body sensation in the eye.

Between this and my Sjögren’s Syndrome… what am I supposed to do other than the Restatis?  I have this cool Dry Eye Treatment paper…

Stop using Visine or other get the red out kind of drops
Drink enough water (he freaked when I told him I was drinking about 3 quarts of water a day… he told me to divide my weight by 2 and that is how many oz to drink, I shouldn’t be drinking so much!!!… hm… that is about 2.9 quarts a day… damn… I have to measure like 2 oz less a day… really?   dork… )
Take regular computer breaks (LOL LOL LOL LOL LOL… okay)
avoid air blowing into your face
avoid ceiling fans even when sleeping
consider a room humidifier
evaluate your meds for dry eye side effects
use artificial tears 2 – 6 times a day
take oral supplements (omega 3 fatty acids, fish oil, 1000 mg 3 times a day)
use artificial tears oinrment at bedtime (gues he was never on pager patrol!)
start lid hygiene (LID hygiene?  huh?)
use restatis
be fit with punctal plugs (yeah… not so much)

So… the next chapter of the adventure commences…

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Trying to Stay Positive

Positivity… One of my favorite quotes is “Whether you think that you can, or that you can‘t, you are usually right.” Henry Ford. Another, I don’t know where it came from (everything I can find says anonymous) is Attitude Determines … Continue reading