I hate Raynaud's. Raynaud's is one of those tag along syndromes of chronic illnesses such as Lupus, Chronic Fatigue Syndrome, CRSD, and Fibromyalgia. My hands and toes get so cold it feels as though they're frost bitten. The day I knew my life sucked was when I had a hot flash during a Raynaud's flare. My hands and feet were so cold but the rest of me was hot. I was like, kill me now! lol
I'm not going to go into the ins and outs of this syndrome, I want to focus on the outlook I was given and the one I currently hold. What I've been told is there's nothing I can do but wait it out. I've been told it's something I must endure and accept. I hate it when doctors tell me that. There is something I can do. There are things to help me through the flare, but I had to look for them. The tips I have are from others with this issue. I tried them at my own risk. A doctor didn't instruct me to do these things. But desperation makes people take risks, doesn't it? The risks I took were slight and they work for me. That's what this entry is about, what works for me.
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 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.
I'm on my back in some sort of headlock aka neck stretch, thinking to myself, does she even know her breast is in my ear? I could all but hear her heart beat. It makes me wonder, are they aware of how much contact they have with the patient? All I had to do to look into her sinus cavity was look up. I could just see nose debris falling on my forehead and I tuck and roll right off that bench! I doubt nostril negligence is covered under malpractice insurance. Ridiculous!
When Buttons was my physical therapist, I had to ask him to move stuff off me or tell him his stuff was too close, back up. I can say that to a man . . . not so easy with a woman. Female anger, female confrontation is not something I do well. Enter Robert in protective mode. ...continue reading "Physical therapy or WWE Smack down?"
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 give everyone I talk about a nickname on the blog. The new physical therapist's name is Black. The last one was Buttons this one is named Black. I used to have one named Piper. When she came here I wanted to believe that she could help with the pain level. I pictured her playing a flute, drawing all the pain out of my body. The rats that eat at my skin and mind were drawn out and away, off the cliff, off of my being.
I met the physical therapist today. I like her..yeah, her. I was concerned about being triggered by having a female but her experience beyond being a regular physical therapist trumps emotional issues. Today she caught what two other physical therapists didn't address at all. I have cervical scoliosis. That was addressed when I spent half my early years in the children's hospital. We addressed the systemic pain and surgery on my legs. My body is crap and it plays in to what's going on with my shoulder.
one thing has come out of this betty explosion with its confetti of ignorance, and that is freedom.
if i desire to wear a headdress, I wear it. if i desire to include an african scarf to my clothing then i do it. it's partly rebellion due to her profound ignorance and partly the need to be me, freely. i won't wear a headdress and carry a black backpack and my black upper body vest (TLSO brace). i might as well wear a target on my back as to do that. however, when i go to appointments or services i dress as the person i am inside and i do not hold her back anymore.
i'm congolese by heritage, boho by choice. actually, it's congolese and german. my maternal grandmother is half german, my maternal grandfather is from congo. i don't speak french or any of the african area dialects. my german is decent, it's not used much anymore. ....anyway.......
I've got nothing to report, really. I've been hanging around the house, still in pj bottoms. My hair is unkempt. I'm rockin' homeless style dreads right now. Gotta do something about that soon or people might walk up to me and give me money..... that's an idea.. let my dreads get really bad then mislead others into thinking I'm homeless. Nah, dang me and my morals!!!
My face is turned down, I can feel it. The sides of my mouth feel tugged towards the floor with little or no resistance.
Thirty minutes ago my stress level was too high. I started talking myself down. Relax. Everything you need is right here, you just need to calm down.
I could feel my heart racing.
I nearly screamed. I was so exhausted and anxious that I just wanted to scream. I felt like I slammed on the brakes. You are not going to scream.
There's too much noise. The AC, the fan beside me, the ceiling fan, the bubbler in the fish tank and the sound of my anxiety.
I was shivering.
My tongue feels thick. It tingles where it makes contact with the top of my mouth.
Despite very little sleep due to some health issues, for the first time in about 3 years I am not in system wide medical crisis. Mental health is a different story.
June 22, 2016 - 11:51 pm
After seeing the PT I was kind of a mess but was able to quickly regain composure. I was not expecting the change in positions for treatment. During the next 2 months this guy will have me lay on my stomach so he can work on my shoulder and neck. I did not expect it! I’d already switched in his office and couldn’t answer too many of the questions. This means I need to keep a small journal so I can bring in info. I have a medical journal I use. ...continue reading "Face Turned Down. Physical Therapy Woes"
I'm still in physical therapy. I switched personalities while in the waiting room. A man disciplined his child with one swat to the butt. A woman who was not with that group, turned to her daughter and said; 'You know you better not speak to me that way. I'd get a switch and beat your ankles'. Even after the situation with the father ended, the woman kept talking and cursing and telling her daughter, who was silent, all the things she'd do to her if she ever spoke to her that way. It was not good. There were no employees around.
The Good. Thank you to everyone who made last month a great one for sales. This month has started off really well. I've now sent art to addresses marked from the United States, South Korea, Australia, Canada, Greece and, the United Kingdom. I have souvenir paper currency from each of these countries except Greece and the United Kingdom. Give me Italy and I'll be satisfied.