The short video about Scott Hamilton's 3rd brain tumor is a very inspiring one . There's one line in it that is so validating for me. First, I'm one who automatically thinks people aren't going to believe that I could possibly have all this wrong with one body. Despite the open, raw blogging for years of progression and slowing of symptoms, I still worry about being disbelieved. From time to time I get a reader who challenges me but I dismiss them. Even so, it's a very destructive experience. As an abuse survivor who was successfully conditioned to believe that no one will believe me, I still find it hard think anyone will. So I all but leap for joy and am validate when I hear quotes like the one from Mr. Hamilton who said, “I have a unique hobby of collecting life-threatening illness." Yeah, it happens doesn't it? He's survived things others haven't. What's more, he's active in life and he wants to live.
The theme of wanting to live and living may pop up quite a bit in various forms on Sundrip because I've dedicated this year to truly breaking out of the old. I truly desire to smash old records, to repair the way I feel about my torn skin, to speak to myself kindly and to live life well. My personal idea of living life well is to live it simply. The biggest obstacle to this goal is my attitude and the stress of PTSD. ...continue reading "“I have a unique hobby of collecting life-threatening illness”"
This entry sparking from a comment on the entry Managing My Raynaud’s Symptoms. The purple ribbon is a symbol for Lupus so I tend to refer kits and such as a purple kit or purple pack. Orange is the ribbon for Reflex Sympathetic Dystrophy.
For years I've been treated for chronic pain as well as the depression and despair that comes with a chronic illness. I may not have known the correct name of the chronic illness but I knew I needed a safety plan.
At the time my pain rises too high, the world stops right then and there and I go into safety mode because I run a real risk of killing myself. First off, my baseline is an eight. I can manage a level 8 without losing my mind but an 8.5 or higher puts my life at risk. I want to avoid that. I want to handle things before I reach that point.
Gradual Pain Increase
This pain is different and it's going to last for awhile and I know it. Immediately I'm angry because I'm about to hit a 9 and stay for a long time, hours to days. It's going to be a very long time. This safety plan is a bit different. For one thing, my attitude is different, I'm angry! I'm about to do this AGAIN! This is crap. I'm slamming stuff, just mad....but I realize I have to act faster than the pain level rises or I'm in real trouble.
I first locate the written safety plan print out which outlines what I need to get through this time. The list is altered a bit right here. It looks long but keep in mind this is primarily a check list, because most of these things are already in the same area.
Get your purple pack out - hat, compression socks, arm compressions, wrist braces, neck brace, hat, small heating pads, aromatherapy items, etc
Telephone - get the phone and the charger. You need to look at the numbers in the Purple category, these are the people you can call 24 hours a day when you're in this state.
Start up heated blanket set to low with gradual heat increase. The blanket automatically goes off after 10 hours.
Locate smaller pillows to help elevate pressure point pain.
Get drinking water and get hot tea in your spill proof cups.
Pull the small trash can over.
Tablet - get tablet with charger and readily available music videos and movies
Locate your sand bag which goes over your legs to decrease pain.
Grabber - get the grabber, you're gonna drop something and it's gonna roll.
Art supplies - these supplies are smaller but work well for my bed desk.
I guess it was inevitable. I showed up to the hospital, a building full of sick people, and caught some sort of bug. I'm hanging out at home with the cat.
Jane sits and watches TV. I want to tell her, "don't sit so close, it'll destroy your eyes". Besides, I can't see around her fur. The little film is about King Hezekiah. It's one of my favorites. I watched a few James Stewart black and whites but she prefers Hezekiah.
Here she sits in a not so pretty photo of me, but I did say I'm sick. She hasn't left my side. Despite the constant flash of the phone camera, she keeps on earning her keep and the first place in my heart.
Right now I'm sort of trying to wrap my head around news from the doctors. They're shuffling diagnosis, adding and removing. I'm not pleased with it. I don't have Fibromyalgia, I have RSD with pain traveling to the left shoulder in the same way it was on the right. I don't know much about RSD at all.
I went to the store today and got the things I attempted to get yesterday. It wasn't an easy day because my pain levels rose so fast that I was in big trouble. I stopped and tried to go through the steps to help myself not panic. When your pain level rises panic can take over then everything is a mess. Three times I cried in that store and three times I got myself together.
I was discouraged but I kept talking myself down so as not to panic and lose it. When I was ready to check out I went to the line that said 15 items or less. I told the lady I knew I was over by about 10 items but that I really needed to check out and go home. She saw the vest and the new arm brace. I tried to dress it up, ya know. I wore a long scarf around my neck and a knitted beret with the same colors. I wanted to look better than I felt. Anyway, she said I got in the right lane because she understands. She talked about her battle with Fibromyalgia. She told me that sometimes it hurts when the wind blows. I shook my head yes. She added, and my hair hurts, too. I looked at her and shook my head yes. I was still attempting to get myself together, swallow the last bit of emotion that might slip out as tears. Then I added. I cut my hair because it hurts to touch my back.
I still got the WWE Smackdown headlock treatment but this time she put a pillow between her body and mine. It worked out well. Since she has a great since of humor. I shared with her the unpleasantness of having a breast in the ear. Some may disagree but it isn't my idea of a good time. I expressed concern for her suddenly getting cold and piercing me through with her nipple. I expressed my concern for mismanaged nose debris (boogers) and me rolling off the table to avoid it.
So, we spent the first few minutes laughing. I then explained that the triggers of having a female doctor or therapist are quite strong and that with increased anxiety, flashbacks, sleepless nights and snapping at my cat was enough for me to pull the plug on the situation. I hated to do that because I really liked her. Not once did she cross a boundary, not once was she inappropriate. As a matter of fact, she has assisted in me finally getting relief for the right arm. She was instrumental in helping relieve the numbness and tingling by about eighty percent. But she's female and that's too much for me to deal with.
Jane remains relatively healthy. She's 15 but she still loves catnip and paper. She is so funny chasing imaginary things. Her favorite toy is a green fish that she got about 2 years ago. She's got a decent amount of toys but I only leave a few out at a time to mix it up and keep her interested in them. The other day I got a box in the mail with a bunch of paper, paper being her favorite thing. She put a thousand holes in it and then nested for a bit. Although Janie has claws, she's not destructive. She doesn't shred the paper or scratch the furniture or anything like that. The paper gets holes in it because she's still got her claws.
One person's physical therapy is another person's torture technique.
PT Black says my neurological system is all out of whack and that it responds to pain even when there isn't sufficient pressure applied. Yeah, I know that. So, she said she wanted to try something she called 'sensitizing'. It's essentially what we do in psychotherapy where we go over a memory that is particularly troubling so that we can take the sting out of it. I did this with Dr D a few times. I've also painted nightmares and was able to eventually remove the sting. So, PT Black put her hand, lightly, on the most painful part of my neck and kept it there. My pain level shot up to a 9 and I started to panic.
After a few seconds I had her take her hand off me because I wasn't able to even think. ... I know the technique she's talking about, however, I wasn't ready for that, hadn't planned for it and wasn't in the mental space for it. What I heard her say was, "I'm going to hurt you and I want you to act like it doesn't hurt." "I'm hurting you. I know I'm hurting you, but you'll get used to it." .........This moves into territory where there will be flashbacks, there will be issues. My mother's version was that by visualizing the harm I would be able to handle it better. I spent a lot of time trying to handle her pain better, now I'm trying my best to live despite the pain she caused. ...continue reading "PT – Neurological Dysregulation Syndrome"
I saw this art easel and on Amazon and put it on my wish list. I'd been thinking about it because some stuff is getting harder to accomplish in bed, and not just art. So, I put it on the list and swore to myself that the next time I make a sale I'd purchase the easel. Well, I posted that on Facebook and someone contacted me and said, hey, let me get that for you. I was all like, OMG! Of course I was going to accept but not for free...not for free. I traded an art piece for it which turned out to be a win-win situation.
I look forward to getting this soon. It's got so many incredible features.
I mentioned that I couldn't just accept it for free and wanted to barter for it. Ya know, a few days ago I removed the button on my sidebar for voluntary donations. I fretted over putting that up there but desperation took hold and I did. I had a cat in need of a few things, and I knew I was sitting in the middle of the month with less than $10 to my name. It took me until August to finish paying off last winter's heating bill so yeah, I was feeling a bit desperate, but..... man, I have a really hard time just flat out asking for stuff. I've done it before. When I absolutely needed something that would benefit my health I sucked it up and asked for it. I was very grateful to have it, too. I have a beautiful blue heated blanket to ease the pain in my legs. It's wonderful.
The lady with whom I bartered said to remember her when I become famous. She'll be disappointed because I have no desire to be famous. I'm shooting for comfortable. My comfortable may not be the same as others. Heck, I know how to shop and I know how to use my limited resources to get my needs met. Other times I have to reach out or others reach to me. That makes me smile. ...continue reading "Art Easel for the Mobility Impaired"
When I look at myself in the mirror the illnesses are invisible even to me, that is until I wince.
If I stand there fully clothed with socks and shoes, I can't see it. I take off my socks and there's the first sign of trouble. Hammer toes, flat feet, I still can't see that the right leg is one inch shorter.
My weight looks like the reason my back hurts, maybe if..........
I start to list off the reasons my body is wracked with pain but I only get to the third one before stopping, still I can't see them, not even I can see them.
I've been asleep for a long time but I have to go back to sleep. I was going to have a spiced, baked pear with a simple Earl Grey but I slept through all that.