Lupus

Maybe a year ago I began to update my emergency go bag. What I included was according to my personal needs which means according to chronic illness.  One of the most important things will be to secure medical information in an easy to get to location. I have a small book that includes meds and doctor's names with plenty of paper to add more notes.

While packing, I kept in mind the purpose of the bag. The purpose of the bag is for immediate needs at a shelter for the displaced. One of the hardest things to remember is that I'm not packing to survive an Apocalypse. I'm not packing in case I'm alone in the wilderness, isolated from civilization with nothing but a volleyball to talk to. The bag is packed to take with me in case I'm displaced in a shelter...a shelter...for a few days. I have a different kit for being stuck in my apartment with or without electricity. Those supplies and quantities are vastly different. I think it's good to be prepared for both. An online search for basic items to include helped quite a bit.

Ok so, if I'm displaced and my cellphone goes out then that means no flashlight app, no digital numbers, addresses or books. With this in mind, I included a small LED flashlight, good batteries and hard copy contact information and basic clothing items.

For me, there's going to be more attention paid to medical needs so in addition to a pair of medical compression socks I have quality socks and a lightweight, air tight container. I included one of my long scarves, my good watch, secured reading glasses and quality antibacterial. I chose oregano oil because it's vastly superior to Neosporin. ...continue reading

"Three Standing" My Face My Art As I finished an image for My Face My Art a cruel voice in my head reminded me that I'm worthless. My gut felt heavy. I wanted to curl in the fetal position and face the wall with my back to everything; anything that might be damaged by my existence.

If this feeling could be weighed, one person couldn't hold it.

I didn't review the images on a day where self image was greater than zero, perhaps I should have. Still, I look at some and think they aren't that bad. They show how much my eyes are becoming a problem.

I would search to find words that contradict the negative talk but I don't really want to. ...continue reading

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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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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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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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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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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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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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One of the things needed in my home is a lot of windows for natural light. Throughout the apartment I have the curtains or shades open during the day and closed at night. For someone who leaves less than three times a week on average, it's important to be able to look outside and see nature.

Most windows are opened for fresh air. Mary Jane and I have huddled at the living room window over the sofa looking out at birds or anything moving. Windows and open spaces help make this apartment less like a prison cell.

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Subject: PTSD from chronic illness, suicide comments, shame, on the upturn, not feeling positive

P17fieldfma - on the easel I wonder if it's possible for a patient to have PTSD after going through several physical pain experiences? This chronic illness torture makes me want to slice myself from navel to nose and and climb right out of your skin because my mind just can't take another second of the current pain.

I fear it. I fear the next flare up. I want to say that while on the up turn from this flare that I'll take advantage of each day I have where my pain is baseline, but I don't feel all gung-ho, lets get back to life, jump in the deep end. I'm not going to jump up and down and proclaim, "I'm happy to be alive!" Excuse me if I don't celebrate surviving that. I could use some nachos but I'll skip the party. I do feel refreshed after such good sleep since Tuesday evening. I feel a lot better but.......... sigh...........I'm shell shocked......and I'm angry.

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