Category Archives: (CRSD) Reflex Sympathetic Dystrophy

I see myself fall apart

5:08 pm EST
I’m lost in this, trying to get out of my skin. This hurts so bad and I’m scared. I hate this!!
Father!

I’ve been hitting 9’s since Sunday. It’s not immediate, it’s a gradual rise as I move around, as the air hits me or I move my head and my hair moves across my back. My eyes close and it hurts, my fingers move across the keyboard and it hurts. I hurt, everywhere.

The last few days I’ve tried to distract myself online and around the house. I’ve even tried to ignore the pain but today is a day where I say enough, it’s pain med time. I’m going to try to make myself comfortable and see if I can get some sleep. I’d rather not stay awake during this, not if I don’t have to. But I don’t want to go to sleep. I want my muscles to stop spasming so hard in my shoulders. I want to get things done, and I’m hungry.

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Tea Score and Tincture at Sundrip Tea Spot

Yay!! I finally was able to refill my lapsang souchong. This seems extra smokey but still good. I prefer Teavana but who on earth has that kind of money? I first came across this tea after someone purchased from Teavana but didn’t like it. I inherit teas this way all the time.

A few months ago I received a nice present in the mail called Chamomile Bloom Herbal Tea. That is one beautiful tea. The florals in it are …beautiful which meant I was going to have to eventually have some more of that stuff. I looked at the ingredients list. I now have them all.

If you understand how to read a recipe or ingredients list then you can duplicate packaged tea. Getting as close as possible or duplicating teas means I don’t have to spend a small fortune on this passion of mine. I can mix some up as I go or I can mix a larger amount of herbs and store it as a Sundrip Tea. I’ll have to start calling these Sundrip Tea. lol.

A friend purchased a grocery store brand called Berry & Ancient Flowers. It’s a green tea by Private Selection. I’m not crazy about blueberry unless its yogurt, but the strong florals make the blueberry tolerable for me. Knowing I may want the tea again, I had to check the ingredients and see if I had everything. I did, with the exception of Calendula which appears to be helpful in several ways. I noticed that Calendula has warnings for people on sedatives, high blood pressure medication and those with diabetes.

Even though I’ve got a knowledgeable individual guiding me, I still make mistakes with homeopathy. The difficulty is one brought up when I was in Culinary School. There is a severe lack of standards and regulations, and people tend to forget that these flowers are medicine. Done correctly, homeopathy has done me a world of good, especially for my situation. But, mistakes in dosing or conflicts with pharmaceuticals can cause serious and other times humorous side effects. This is my segue to a part I’ll call, “How to know if you’ve taken too much turmeric tincture” aka “Good Lord I can’t stop throwing up my internal organs.”

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Car Accident

It’s a devilish night to feel the pain of being whipped forward and back. I knew I’d feel this later. We’re having thunderstorms. Monday around 12:30 pm my cab was rear ended by a small sedan.  The same day I took a short walk and in my therapists office when my pain rose high, I did some stretches to try to ease it a bit.

It’s time for my Purple Pack and more sleep. Mary Jane has stolen my spot on the bed and is taking advantage of the heated blanket.

Faith

Therapy Review: Suicidal Ideation. Safety Checks

I was awake until 9 am then got up and got ready for therapy. It reminded me of my college years where I had severe insomnia but I could get up, shower, get dressed, eat and be out of the house in a very short period of time.

local It was an odd day. The weather is beautiful. On the way I talked to my cab driver who has been taking me for about a year now. I really like her. Today on our way to therapy we got rear ended. I was wearing my seat belt but I didn’t have on my back brace. It was quite a jarring we got. My pain level sky rocketed making me sway, swoon almost in this rocking, sea sick kind of way. I was trying to gather myself so I didn’t throw up. I needed to get my pain down very quickly so for the first time in about a month I took half a pain pill. It helped for a bit. I started doing small pelvic movements to get fluids in that area to ease the pain. The movement is so small, in the car it wasn’t obvious to the driver.

I got to therapy and began reading the journal entries to Dr. D about suicidal ideation. Again my pain skyrocketed. For the first time in his career and the first time in therapy I got on the floor and did a few yoga stretches to relieve my back. it helped a good bit. I kept my shoes off.

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I’m Fine

The most common lie I'm fine - Google Image

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.

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I’m not fine

Sanity: My Face My Art - Copyright Sundrip Journals All Rights Reservedi 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.

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the ‘Suicide Disease’

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.”

CRSD can disfigure youThere 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.

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Prednisone. Anxiety. Peaceful Rest

Reminder: Faith, you understand you can’t cure yourself, but you, without a doubt, know how to take care of yourself. You can be proud of that fact.

When a person is so frightened of something they may stop thinking, panic and make decisions that aren’t appropriate for the situation. Being so afraid of pain that you stop thinking can lead to longer pain. I am afraid, more than I can say, I’m afraid, but I’ve got my plan and I’m sticking to it.

Yesterday evening, not sure what time, my pain level started inching from the baseline 8 to a level 9. I can’t do a 9 and keep myself sane so I started to prepare for a long night. The first thing I did was put on the mix of Juniper essential oil, Rosemary essential oil and Lavender infusion. I went and got some complex carbs and backed it up with sugar; 2 pre-cut apple slices dipped in cashew butter with a dab of honey. I could feel my pain level drop within ten minutes of all this but that doesn’t mean anything, it could spike again.

After about 20 min and my pain level was at baseline I decided to do a foot bath of Espon Salt, baking soda and lavender infusion. I tossed in some fresh lavender, too. :-). Loved it.

Despite using Passion Flower for anxiety I’ve still struggled with it to the point that anxiety feels like it’s replaced my blood. All I’ve got running through my veins is anxiety. I have to remember that the steroid treatment will cause increased anxiety for me. I have the tools to ease that anxiety and I need to remember to take them. This is where falling into fear can get me in trouble. Freaking out means I don’t do anything but curl up in bed when there are steps I can take to help with some of the symptoms. Passion Flower tincture, candles, Klonapin, aromatherapy, heat therapy, weighted blanket, teas, on and on. These tools help me through bad times but they don’t cure it.

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Therapy Review: Betty. The crash and burn

Subject: Went over entries about Betty behaving like a brick wall, went over near physical altercation and the trigger for it, talked about Robert not being present tomorrow because that amount of protective force isn’t needed with her. Talked about getting this information to all of us that Betty is no longer a safe person for us. Took responsibility for my own triggers and allowing her to act out over a period of time.

I went to sleep directly after therapy which I did not attend in person, however, I did read both entries concerning the situation with Betty. The most he said over the phone as I read was, “hm!”. I said, I can tell by the tone behind ‘hmm” that you recognize this is crazy? He said, yes. He asked if I was going to see her anymore I said, I’ll see her tomorrow. Enter the discussion about physical violence should she enter my space like she did a the store. I explained that Robert will not be with us on that trip to the hospital. It’s been set up for a while. I’ll be there a good bit of time. Transportation for follow ups is being worked on.

I told Dr. D that we have been going over in our head what needs to be done in order to make it to the hospital for treatment and then get home without going to jail.  I find nothing humorous about the fact that I can be pushed the point of wanting to body slam another person for getting in my face. I wish there was more control than that. Dr. D asked what our safety plan is for dealing with her tomorrow. I said, I’ve been doing what I used to do with my mother, thinking ahead, planning my lack of emotional response to whatever she says. Any needling, any nagging, any missiles shot at me will not land her the expression she’s looking for. This is what I did with my biological mother, plan my steps ahead and do not respond emotionally.

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Touch. PTSD and CRSD

I can be touched. Heck, I can’t go out in public hardly without someone touching me. A woman ran her hands through my hair at the store one time. She wasn’t knocked out. A guy came up and pat me on the arm to ask a question. He wasn’t knocked out. Strangers touch me quite often and no one has been knocked out. Clearly, just being touched doesn’t make me want to body slam someone.

Since I am sometimes physically unstable and fall, I talked to Dr. D about what to do if I fall in his office. Don’t touch me. Nope, Dr. D should never, ever touch me! Not ever! I’ve seen him for over 10 years but touch is not an option for him.

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