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I'm holding back when it comes to posting art work other than sketchbook art. I don't know why but I feel so closed up right now and not willing to share the new stuff. I suppose I will again soon.

Janie TimeJane has good days and bad days, today is a good day. She has finished 2 of the three medications. Pets get old, get sick and they die, and that sucks. I have good days and bad days, today is a tired day.

I've got another month of dental work coming up that I'm not looking forward to. Also, there's a lump in my mouth that they need to look at closer. I wanted this dental stuff to be over with but it's not. I can tell there's damage to the nerves which has added more pain to my plate.  ...continue reading "Holding Back. More Dental Work. Blood Stream Infection."

3

I feel a turning I can't stop
and the reemergence of pain I can't bear.

She looks through me, laying on the floor on a make shift pouch of blue,
her eyes are in my direction, but she looks through me.
I watch her belly rise and fall as if my own life depends on it,
because it does.
I stroke her head, travel across her frailty to absorb every ounce of pain through my fingertips
like any mother would,
just to see her baby get up again,
to see her pounce, sleep on my shoes, curl up in my favorite chair
or loudly sound the dinner bell.

I hold her close and share my warmth
as if to will her gums pink with life,
make her paws stretch open then close around my finger as before.
but she just looks through me,
spent, she looks through me.

Jane did something today she hasn't done in nearly two months. She climbed on me and licked my face until I woke. She wanted breakfast. I'm also happy to report that her gums are pink! They're pink!!!!! There's a turning in her health, one I had given up on at the writing of the above piece yesterday. I need so badly for her to recover. I said it means my life. Of course I will not die a physical death, but I don't want my connection with Jane to be severed by death. I don't want this to end. ...continue reading "When Pink is Beautiful. Long Term Health Care."

They said if I wear this little patch it'll help; it does.
Hope - My Face My Art

My Face My Art - The invisible illness becomes visible.
It's as clear as the art on my face.

The three art pieces used in this addition of "My Face My Art" are: (drum roll please) ...continue reading "Hope and Art"

2

A phrase went through my head this morning that tells me that my instincts about the GP I saw yesterday are correct. I need to move on. She's not the one. I'm writing things down so I can remember the entire experience.

This morning I remembered that while talking about me taking pain meds from time to time, the new GP said to me, "But Dr. Old GP wants to move you away from any pain meds."

I'm not seeing Dr. Old GP so why are we talking about what he wants to do for my care? ...continue reading "My instincts are correct"

2

I saw the new and temporary general practitioner today. It was crazy right out of the gate. Within ten minutes of being in her presence, she suggested shock therapy. I nearly walked out. She went in to how it's not like what you see on TV and blah, blah, blah. I told her I'm not interested. She then wanted me to add Abilify to my psych meds. I don't know much about it. She said it's supposed to help make the Cymbalta work better.

I decided to call my old nurse practitioner who is retiring. She's the one who handled my psych meds. This is where trust comes in. I don't know the new GP. There is no consistency to fall back on, no working relationship, no track record to rely on so I don't know why she suggested this medication. The old nurse practitioner said that Abilify will add dopamine (the good chemical) to help with my mood so I can get out of this depression easier. Shoot. I can do that with chocolate and wine and earn the dang weight gain. Okay... I'll try the 2 mg per day.

I'm not happy about the weight gain issue especially since I just lost 10 lbs, I don't intend to be on Abilify forever. I will lose the weight and feel better in my head. I need that very badly.

Also without knowing my history, she told me to go purchase some Black Cohosh to help with Menopausal issues. I absolutely can not take that because I have had a stroke and I have a history of blood clots. Between shock therapy and just popping off with Black Cohosh, my confidence in her is minimal.

I'm horrified by the suggestion of shock therapy. When I told my old nurse practitioner said, She just threw that out there the very first time you saw her? I said, yeah, within ten min. She said. tell her you'll have it but she has to go first.

I've not seen the movie One Flew Over the Cuckoo's Nest, but I hear it gave people a bad view of the treatment, which is making a come back. In its defense, I've heard "Films such as One Flew Over The Cuckoo's Nest did for ECT what Jaws did for sharks". That isn't a valid argument because sharks kill people and so does shock therapy. No matter the stats, I don't do water so no horrible shark death for me. I don't do ECT which means no electrical mishaps. I don't care what you say, shocks and sharks are bad for your health.

The new GP wants to see me back in a month. In that session we will discuss pain and what I do to manage it. That session will make or break our future relationship. I need to know where her head is in all this.

Back to the old nurse practitioner. This woman told me that when I go to see a new psychiatrist I should not bring up that I'm in therapy. She said to give them as little information as possible. Don't tell them I have DID. Don't tell them I have PTSD. Don't tell them about my abuse history. Tell them my brother died and I need medication for depression. I feel this is bad advice. This is where knowledge come in. There are certain things doctor's need to know. Not every doctor needs to know absolutely everything but if you go in for psychiatric care it might be a good idea to give them some history, ya know? There is a trust level with the old practitioner. I trust that sometimes she's going to go off the deep end.

Withholding that kind of information with my medical history is a very bad idea and it goes against everything I stand for as a patient. I am honest with my doctors. I need them to trust me as much as I trust them. Not everything needs to be disclosed but I don't think believe completely withholding information is a good call either.

 

Jordan

10 pm
My right leg is still swollen but it doesn't hurt nearly as much as it did yesterday. I'm still wearing compression socks.

I fell asleep shortly after writing my last entry. I've been sleeping for a very, very long time, all day and night. I got up to use the restroom. I got up to feed the cat and take medication, other than that I've been sleeping. I couldn't keep my eyes open.

11:48 pm
I went for an orange and got distracted. I cleaned the kitchen and vacuumed the floors. I had an orange, water and some tea.

Yesterday evening was scary because I wasn't sure I'd wake up today. I jotted a quick note to my friend Snow and closed my eyes. The leg was really bad yesterday.

One of the best things for edema is activity. I need to increase blood flow. I also need to be conscious of what I eat. I don't take a lot of sodium but at this time it's best to be even more careful with it. My stretches will be important. My vascular issues are Lupus related which means the root of the problem is in my blood and immune system. If I am to have any impact on this I'll have to do it from the inside out. I have to get that turmeric, ginger and black pepper back in me on a regular basis. I have to get cinnamon and garlic back in me as well as organic honey. These are vital. Funny how I can now see how vital it is after having stopped regular intake for nearly two months. ...continue reading "Lupus and edema. Dignity in life. Finding light."

Finding Up - The view from down hereThis evening I'll go to services at the Hall but at half point I'll be taken home by another Lupie. She's part of the group I work with. I would like to stay for the entire meeting but I know I'm not physically up to it.

When I go to the Kingdom Hall I sometimes sit in the auditorium with everyone else but there have been times when my pain level has risen to the point that I need to lie down, in which case I go to the library and roll out my exercise mat. This is the photo from the floor of the room.

No, you won't find me back there doing leg stretches. It's just more comfortable using the purple mat on top of the carpet.

I talk a lot about 'yoga' that I do but I should be very clear in that I don't practice yoga. I do stretches that assist in pain relief and build muscles in areas that have weakened due to chronic illness. In that spirit, I was taught several exercises tailored to my health situation. This is important because some of the exercises on line would work against me. Having guidance lets me avoid accidental harm.  ...continue reading "Finding Up. Amateur Herbalist."

1

This is a whirlwind journal entry, a roller coaster journal entry with a bit of resolution at the end of this entry. This first part starts out with me being angry enough to slip in speech just a little bit......

5:37 pm
I was ranting to a close friend about the medication I was to 'make last'. It is so offensive. It felt like him saying to me, 'I know this isn't anywhere close to enough. I know you're going to be in pain but here is a tiny, tiny bit of relief.' My pride kicked in. You can not do this to me. I am so angry. How dare you call me twice and rub salt in my wounds? So, while talking to Snow I said, "I know they didn't think I was going to be okay with it!!!!!! I said, you can't toss me scraps and think I'll be okay with it. They've got the wrong nigga for that!!!" .... oh crap........

I have spent the last 5 years doing my utmost to clean up my language. I always worried it would be the F-bomb I'd drop, not the N-word. Right now I'm pushed to the brink. How many times do you need to call me to tell me I can't come back and that you're not giving me refills? The 30 days are up. Why are you calling me?  ...continue reading "I’m not your dog"

2

It hasn't even been a year since I was diagnosed with CRSD.

CRSD extreme sweatingThis isn't normal sweating. It's not a hotflash, it's a 10 min or so flush of water in excess of what the body needs to cool itself. This episode lasted long enough that I decided to photograph it. Noteworthy is that I'm standing beside the air conditioner when this episode took place.

There's no certain time of day, no specific weather conditions I've tracked and no relation to hotflashes related to the change. Those hotflashes feel very different.

When it comes to extreme, excessive sweating and CRSD, I don't necessarily feel hot. What I feel is a sudden change, maybe a tad bit light headed and then the downpour. ...continue reading "CRSD and Extreme Sweating * Strong today. Strong tomorrow."

Content: Difficulty with doctor and medications. High risk of suicide for CRSD patients. Strong support system. Angry.

All my meds are up for renewal. The pharmacy has to call the GP to refill meds for the time that I'm still legally under his care. If they deny refills I will go to one of the emergency clinics associated with the hospital and request medication. I've spoken with my pharmacist today and explained the situation. I've been with that pharmacy for 10 years, they know me well and have been active in educating me about medication contradictions. The pharmacist was nice. She didn't laugh or ask "What did you do?" She didn't ask but the long and short of it is, "I got emotional concerning medication mistakes two times in a row. I was blunt and showed irritation."

You know what? When a doctor sends a reply back to the pharmacy that denies medication it quickly triggers me because it means I've been left in pain with nothing to help. It says walk in the middle of the street. It says, You're not going to be able to stand living in your skin. I panic. Anyone who has ever experienced CRSD pain knows that certain levels of pain make you lose your mind and you're willing to do ANYTHING to make it stop. To be denied medication feels like a death sentence for a crime I did not commit. I have no idea if he's going to refill. I'm just saying what it feels like to have my meds messed up or denied.  ...continue reading "Getting Med Refills from the Doctor that Fired Me"

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