This 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."
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"
I am emotional in most GP visits because the doctor has to touch me and it hurts. Also, sitting in the doctor's office feels like my denial blinds have been lifted. At least outside the office I have a measure of time where I'm not thinking of my body and what has been lost, but being in that office is different. I know why I'm there. I know that faking a smile isn't going to work. I feel vulnerable and I cry. I chatter on when I'm nervous but I can tell you what hurts, where and how it feels different from the normal pain.
I've been told recently that expressing clear needs to medical doctors can be problematic. I used the word recently because this isn't news to me. I've heard it a thousand times. I've also hear it said, 'You're more involved in your health care than we're used to seeing."
What's interesting is that I no longer have faith in you. How do I put faith in a community that has no faith in itself? Doctor's constantly put down their peers down. I've had GP's tell me to stay away from pain specialists. I've had orthopedic specialist talk bad about other orthopedic specialists and rheumatologists. Nurses in office will talk bad about the doctors and tell you what medical practices they think are quackery. If you can't even agree among yourselves how to treat the basic needs of a patient then how do you expect me to put my trust in you? You don't even respect each other.
...continue reading "The broken yet determined chronically ill patient"
I'm battling my mind and body.
I've had sporadic periods where pain has knocked me off my feet. Funny thing is, at the time I remember thinking to myself, I understand suicide. That thought would be strange if it wasn't for my brother's death being fresh on my mind. The lack of information concerning my sister weights heavily. It is also true that there are times I think I can't take another second of pain and that I'd rather be dead. Dr. D has noticed some PTSD issues associated with my chronic illness. I feel validated by that. This is traumatic. It's like my private civil war where I die every single time. There are times, like yesterday when I thought to myself, I understand suicide. ...continue reading "Lupus CRSD Suicide and Survival"
It's cold. I'm aching. This Lupus moment has been brought to you by Samsung Smartphone's, where overheating batteries double as cordless heating pads.
After reading in bed, I realized my phone was warm. I cupped it then held it to my face relishing the warmth, then I remembered that my smartphone is a Samsung and this bad boy will explode. Time to turn on the real heating pad, the one dressed in cotton cloth with yellow roses. The fabric may have yellow roses on it but it still smells of lavender. The rest of the room hints sandalwood and sage. I get my sandalwood incense from Ebay once a year for little of nothing. ...continue reading "Lupus. Smartphones. Tea and Smoke."
Today I begin the process of bottling up tinctures and oils used to help with Lupus and Chronic Reflex Sympathetic Dystrophy. The tinctures help ease pain, decrease inflammation and strengthen my immune system.
Today I'll press out the lavender infusion and bottling that before I start on tinctures. The last thing I want is to cross contaminate lavender infusion with turmeric tincture. It's not a good mix. The Passion Flower tincture is the one that helps ease anxiety and aid in sleep.
The homeopathy care plan I have is a good one, but there are times when I don't take it even though I should and I can. I've always done this. Even though I am fully med compliant I hardly ever take extra meds, even when they're prescribed. I've been given a medication script to knock me out when my pain level reaches a nine. I've been told how to take this med but it's hardly ever done. I've been given medication to assist with anxiety attacks and assist with sleep but it is hardly ever taken. Why? Why do I continue to deny myself comfort or an easier course?
...continue reading "PTSD. Mental Health Renovation."
The timing of this crisis with my sister is one that has been brought to my attention more than once, but I reject the idea that I should see this upset as anything other than coincidence. She hates me, she's not going to manipulate a person she hates by saying she's going to kill herself. She's not reacting to the entries I wrote about letting her go. I reject the idea that she feels anything at all for me so that she would act out because I said I no longer hope in ghosts. People can say what they want, the timing of this is coincidental, but my stand is firm and decisive.
I sent her a letter to go under her door. Her apartment is the last place anyone saw her or heard from her. I sent the letter because I had to. How could I not? When I realized I could possibly contact her I sent a letter through a friend of a friend.
My every waking thought is her but that's not how it was two weeks ago. Two weeks ago I felt ready to walk away emotionally. I felt ready to move forward and let the past stay the way they created it. But today, she's all I think about. She's all I think about.
...continue reading "She’s All I Think About"
February is Suicide Awareness month.
People ask all the time, "How are you?" I say, I'm trying to manage. No hugs are shared. At that time I may not be in so much pain I can't be touched but I still decline a hug. the truth is, i'm not okay. hardly ever am i okay.
as i write this i do so with my eyes closed so as not to see the words and judge them harshly before i can finish my sentence. i'm just letting it go, nothing to stop me, not even myself. at the end i'll correct spelling and that's all.
i was told that February is suicide awareness month. how strange to think of my existence in the last few months boiling into February with pain i didn't think i'd live through. i honestly didn't think my body was able to live through it, and if it did would i actually have the ...the whatever, to lift myself of the bed and go back to life as usual? this isn't usual, nor is it survivable. it feels as though it chips away at me, like i'm being eaten alive by fire ants. i'm watching them chew on nerve endings and there's nothing i can do about it. that's the easy part of this disease and its progression. the hard part is when the pain calms down and i look back at torn flesh and know i'm going to do it again and again and again. no, i'm not ok. i'm not ok at all.
...continue reading "I’m Fine"
i feel so broken, exhausted, shredded. i need a mental vacation, somewhere out of my body and its inferno. that thought plagues me, i have to escape this.
they say when a person says they want to commit suicide that it's a cry for help, that they don't really want to die. that's true. i cried as loudly as possible. i'm not okay. help me. i'm not okay.
February is nearly over and i'm still here. i nearly didn't survive it. had it not been for answers to my calls for help i may not have been here to look people in the face and say, i'm fine.
what a ride this has been in a body with no armor traversing through emotional warfare. the disease let my body live but left my mind to rot. (eyes open at this point)
i took the diagnosis of CRSD very hard. i'd never heard of it. it made sense to me once it was explained. but i promised myself i wouldn't look up information on it. i promised i wouldn't study it because i want to be able to give the doctor a report from me and be able to say 100%, this is from me. I didn't read it somewhere. I'm paranoid about not being believed.
...continue reading "I’m not fine"
I found an article about CRSD and how it affects people emotionally and socially. Although it's hard to hear it called "the suicide disease" I understand why because I'm sitting in that very spot as we speak.
Excerpts from : What It's Like Living With Complex Regional Pain Syndrome, the 'Suicide Disease'
"Complex regional pain syndrome (CRPS), also known as reflex sympathetic dystrophy (RSD) is one of the most painful disorders known to man. On the McGill University Pain Scale, CRPS/RSD ranks 42 out of 50. To put this level of pain in perspective for you, that ranks higher than both childbirth and amputation."
There are times when it would feel better if the limb that's in pain and on fire was amputated. I just want the paint to stop. It takes over my head and I start to get desperate and once I'm desperate then I'm irrational and willing to take risks. This is one of the reasons people with Chronic Illness have to be concerned with addiction. We want the pain to stop. There are times when a patient may give their pain meds a boost because they can't stand the pain anymore. This boost comes in several forms, either adding alcohol to the meds or taking more than prescribed. Although I understand why it happens, I also understand that it's a dangerous road to travel.
...continue reading "the ‘Suicide Disease’"