Glass

Today is not a good day.

I woke up with a migraine- breath-stealing, nausea roiling, light/sound/smell/touch-sensitive; and all I wanted to do was take my meds & sleep it off. Stress has been high lately, & I’ve had more migraines in the last few months than is normal. I can’t afford some of the meds they want me to try, so I have to deal with them by smothering the pain in sleep. The doctor doesn’t understand… It doesn’t matter if a drug might help me, if I can’t afford it. It’s not even a guarantee of pain relief, just a chance. A maybe. 

I don’t make enough to throw utility money at a Maybe.

Then, I get a call from my regular doctor’s office. 

I have osteo arthritis in my hands, diagnosed by a rheumatologist. Most of the time, my hands, mainly my finger joints, feel as though they are full of broken glass, grating & grinding on itself, just under the skin. Occasionally, when there’s pressure put on those joints, the glass sets itself on fire, just for that extra-special kick.

He told me he couldn’t do anything else, as far as treating the pain long-term went, that I had to go to the Pain Clinic for that. I was to call my regular doc & have her send a referral to the Pain Clinic for me.

They sent a note back to her this morning saying they won’t see me.

Regular doc says I have to call rheumatology doc back, to see what my other options are. 

So, basically, the health care system here is telling me they want someone else to deal with it. No one is willing to actually sit down, LISTEN to me, & help figure out a solution. I don’t know if they don’t believe me about the pain, because no one is actually talking to, or listening to, me. They’re all looking at xrays & blood tests, thinking that tells the whole story.

I’m not a hypochondriac looking for attention. I’m someone who’s been through a lot of medical crap in her life, & because of that, has built up tolerances to certain pain meds. 

I don’t like taking pills. I don’t want to feel stupid & slow at work, & I don’t like the loss of control the drugs make me feel. I’m a control freak when it comes to my own body. I’m in charge, & I hate not feeling like I can say what happens with it.

In 2001, I finally had surgery that fixed a problem with one of my kidneys – that took 5 years & every test known to man & his dog to figure out. 5 years of flaring, excruciating pain, without a diagnosis to even give me a sense of reason. 

In just the past 3 years, I’ve had to deal with having my gall bladder removed due to gall stones & severe pain caused by inflammation.

I’ve had endometriosis, adenomyosis, & an ovarian cyst, which ended up with me having a hysterectomy. Following my surgery, my surgeon said he couldn’t figure out how I’d been walking upright, much less how I’d gotten into the hospital on my own two legs, due to the extensive pain the numerous occlusions of endo & adeno would have caused.

And now, the arthritis diagnosis.

I know pain.

I know how it steals your breath, messes with your senses, & turns your world into a small, very self-focused, & seemingly selfish, place.

I know that other people can’t feel my pain, they don’t understand that – even picking up files, taking a cap off a water bottle, using a pliers to take apart rivets & staples (part of my job, taking apart books held together by these things) – all these things cause my hands to flare, & tears to spring to my eyes because of it.

I gave birth to all 3 of my children naturally, without any drugs to aid the process, & ended up in shock due to blood loss during one of the deliveries.

I know pain. Don’t tell me I’m not perfectly aware of what my body is telling me.

I just want to be able to go to work & live my life without being either half-stoned on pain meds, or in constant, grinding pain.

Where do I turn now?

While I sit here with my hands full of glass, my head pounding, & my chest full of anxiety, depression & hopelessness.

What do you do when all the doctors, the “professionals” tell you that you’re not worth their time…..

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Fear, Blessings & Change

There are days when I fear.

I think about the fact that I’m soon going to be 47, and that I’m in the upper-middle portion of my life. I’ve had a hysterectomy, so, no more children, which is both a sadness and a blessing. There will be no more warm little bundles combining my DNA with someone else’s. But, then, there will also never be anymore sleepless nights of feedings, diapers & the stresses of teenage years. I’ve come to accept this, & I am not only Ok with it, I’m happy that part of my life has passed me by.

But, there are also negatives that have come with the maturation process.

I have osteoarthritis, mainly in my hands and wrists, & over the last few months, it has come to be a large focus for me.

My hands play such a vital role in my life, and I fear what this change will bring to me.

My job consists of working with computers and files. I type…all day long. The arthritis has restricted me in many ways, making my job a lot more difficult. I have trouble handling heavy files, as they put a lot of pressure on my inflamed finger joints, and the medicines I take for it don’t completely mitigate that pain. Typing all day puts stresses on my hands that I never thought would be this complex and painful, but I have learned a lot about my limits & my capabilities, including my tolerances for pain. 

And then… There’s my art.



Things like these take a LOT of hand-work. I twist wires with the help of jewelry pliers & locking wrenches, but the bulk of the work is done by MY hands. On days when the barometer fucks with my arthritis, it can go from uncomfortable, shifting to painful & excruciating.

How can I continue to do what I love, when it can cause so much pain? 

How can I express my visions, my imagination, my passion, when I can’t manipulate the medium I work through without crippling my tools – my hands?

This is my fear…

That the arthritis will steal my gift.

That it will destroy something I love…my art. 

And I will be left without it’s comfort.

Where is the blessing in this change?

…….I continue to search…..