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  • Pain

    My body hurts bad today. The back of my head and neck is stiff...knees are throbbing with stabbing pain. I read treatments can cost tens of thousands of dollars. Everything I read says to try creating a crowdfunding account page. Insurance won't cover most of the treatment and testing. Even if I start a gofundme account for it, im not a popular person...I doubt I would get more than a couple hundred maybe. I wish I was a more personable person. I likely would have been if lyme disease and interstitial cystitis didn't change my life. I guess it won't hurt. I cant imagine trying to think of what to write. Maybe I'll do a video. My critical thinking is not working right. I feel like im not able to learn new things. Itd like I lost my ability to imagine or have an inside thought of what can happen. I dont even know how to explain it. I feel confused a lot of the time. A few months ago i got LOST driving to Walmart. I forgot where I was and nothing looked familiar even though I should have recognized it all. I used to think it was an anxiety attack out of nowhere. Now I am 99% sure its the Lyme bacteria. Going to attempt to make a gofundme lage I guess. Anything can help. I need to find a place where I want to go for treatment first though so I know how much I need. W Wish me luck. I also want to find any clinical trials for lyme disease if there is any.

  • We are moving!

    We found a nice 4 bedroom house. I am equally excited to move, and frustrated I can't help more. My elbows are pounding and burning. As are my finger joints. I have late-stage Lyme disease with polyneuropathy. The Lyme bacteria has entered my central, peripheral and autonomic nervous systems. Just mean it sucks. So... we are moving. Crossing my fingers I won't be super exhausted and in pain so I can actually help out. I want to spray paint some furniture so it all looks cohesive in color. Right now our furniture is a collection of hand me downs or 2nd hand. Left knee, left elbow is tingling and burning. Wooo gotta hold on. This move will be a big release for me and the family. We plan to throw a lot of stuff away. Wish us luck.

  • Tired and hurting

    My bladder has been burning on a daily basis. My knees swell shortly after I get up and start walking around. The pain from my my knees is sharp but also a dull ache. My elbow have been throbbing in pain. Ok well It has been a bit. I am having a lot of difficulties sleeping with the amount of pain I'm in. I have the past several times been too sick to eat anymore without feeling extremely nauseated. Ive been very sensitive to dozicyckine I can feel my depression sinking again.

  • Lucy Wyndham-Read is my Godsent.

    So you have got to check out Lucy. She has 7 minute exercise videos and several for low impact people like me. I got through about 5 minutes of exercise from her 7 minute low impact exercise video. I am scared to cause a flare but I got to loose weight or I will never be as healthy as I can be. Im determined. My legs are aching. And its not like a good workout ache either. I miss that feeling. Crossing my fingers I won't be in a lot of pain tomorrow. https://youtu.be/yxsiknbfLbs Check her out https://www.lwrfitness.com/reviews/ Real Results

  • Slow lately

    So ive been having bad flares and pain really bad the past couple weeks. My back keeps feeling like im having contractions when I try to exercise. It gets incredibly stiff and I cant move. Hurts to breath when I dont sit down almost immediately. The contraction or spasms are moving from my lower back up the middle and to the sides behind my rips. Hurts to breath man! How am I supposed to loose weight like this???? I can't even do simple stretches without getting worried im going to set up myself to have a spasm/contraction. Oye. I see my new pcp this week. Maybe they can do all the blood work with hormones etc. So freaking painful man. I've been doing macramé. It took me a week and sore fingers and wrists but im almost done. I used to be able to do something like this within maybe an hour. Now it takes me at least a few days. But, it still makes me happy. Supposed to be a tree. Trying to decide if I want to back up my work so I can put the remaining beads on that way or put them on another way.

  • Day by day...

    Hello, long time no blog post. I have been extremely exhausted and my body has been aching differently the past couple weeks. Ive been more irritable than usual as well. Short tempered, get to the point type of attitude. I hate it. Makes me feel nauseous. I need to loose weight. I need to figure out a way that I will be able to exercise. I am so weak. Even doing basic things like walking through the house and picking things up makes my back seize up and spasm and it feels like I cant move. But I got to figure something out. If we had a pool I'd use it 24.7. I want to do aquatic therapy exercises but I have to be realistic. I'm not going to go enough to make a difference. Esp when it's so cold outside I don't want to leave the house. Let alone be seen in a swim suit. I dont recognize who I see in the mirror. Starting gabapentin again i think. It made me unable to process things and be able to concentrate when I was working so I stopped using it. But im not working now so might as well try it again. I have started macabre. It takes me forever because my fingers and hands start to throb like its sore down to the bone. At least it gives me something to work on to keep my mind going and hands moving. One project that used to are me an hour or two takes me days. Maybe ill post a photo if I ever finish it.

  • Human Storm Predictor

    So...my body, everywhere I have a nodule and the area around it is throbbing and in pain. Those areas feel like they are burning. Im sending this information to my pain management doctor so she knows and maybe she can explain my symptoms better. My pain level is at about a 7 or 8. The throbbing pain catches me off guard and I will drop stuff if I am holding something. Its that kind of pain. Anyway, I found out a storm is coming in a couple days. I think that contributes. Its so frustrating. I have these nodules that cause me severe pain on days like today. Although, I didn't take as many medications as I usually would. Usually I have 2 to 3 muscle relaxers during the day to get by. Today I took one this morning. I dont usually miss the mornings because I'm in pain from laying in bed. Prick burning pain. There has to be a reason for this type of pain? I get it in my armpit area as well. I've gone to dermatologists about these nodules and they don't listen to me. Just some girl who doesn't like bumps....im like dude. You think I want to go to a doctor and spend that money and get cut open ?? The LAST thing I want is have to go to a doctor. I want my life to be doctorless as much as possible. I dont know what life is like without going to the doctor at least once a month. Garrrrr!!!!! I also want to bring up my eyes have been feeling like a dull pain all day. Dry and stuff. Its like having a headache in my eyes. Maybe its just a headache??

  • Body

    I have got to loose weight. Im going to try to do more than just the stretching and simple yoga. I've got to get this weight off of me. I have the worst back spasms when I try to walk around the neighborhood I end up feeling like I need to crawl back. If I take muscle relaxers before I leave for a walk, I will look like im publicly intoxicated. Need to control my ice cream intake. I love ice cream so bad yall don't understand. I used to be able to have 4 scoops of ice cream like it's nothing literally everyday and I did not gain anything. I was also 120 lbs. Im not almost 200 lbs. Maybe its not super bad for some people, but I do not know how to live with it. I shouldn't live with it. I just dont know where to start. I cut out sugar starting last night. Sugar like candy and soda. Im working my way to ice cream and sweet breads. I think if I were to try to do that I would put myself through a sugar free shock. I am loom knitting a hat for my cousins baby girl. She is due in March, but we will see if she decides to make an early entrance. I am trying to figure out the pattern I want to do. If I have any problems with designs is my ever changing thoughts. It gets me nowhere but I am really trying to work on it. Not to mention my knuckles start to swell and ache if I do it longer than 10 minutes or so. Worse on certain days or if I dont take my muscle relaxers.

  • Its. A. Battle

    So im realizing symptoms I thought were hormonal, (I had a total hysterectomy last year)...could actually be a deeper problem called Sjögren's Syndrome. Swollen eyes, hands suddenly go as dry as a bone, mouth becomes dry and my tongue will stick to the roof. Yeah. Its all suddenly as well. So yeah. Got more blood work. Whats "Dont Look Up" tonight. I loved it. All the characters were just the right irritating, angry and aloof as they could be. Totally ignorant what is right there in front of you. Don't look up is about earth being destroyed by a comet. Scientists were not being listened too because they didn't fit into the entertainment narrative. I cant sleep. Its 3am so I need to try again.

  • Holy Cow im hallucinating y'all

    So turned out taking Lyrica and tizanidine is a good mixture for seeing random weird shit. Ive seen random lights looking like they are going to fly towards me. Ive woken up randomly punching out at stuff and freaking my partner out. He is mostly out of it but still. Ive got a suspicion i may have Sjogren's Syndrome. Ive got all the symptoms. Of course that doesn't matter though. The doc has to feel it in their loins to really tell you if they can diagnose you or not. What does it take to get a doctor that REALLY wants to figure you out? I sent several rheumatologists information about my situation. Then I reminded myself I have state insurance which means even if I wanted to go to the two closest states for a doctor that could help me its going to be an out of pocket bill. What is the point of having governmental health insurance if you can't use it everywhere in the US??? Augh. I was able to loom knit for about 10 minutes on and 10 to 15 minutes off. Then again. Im maybe 1/4th done....only cause its for a smaller head. Can't explain how much burning it cause in my fingers. I'm worried on Christmas day I will be in a bad mood. But I got to make it not about me and just about my kids. Its hard when day in and day out you are reminded your body hurts. Pounding, burning, stupid hurts. I need a fake it until I make it smile on my face for the next week.

  • More meds...

    So I was given lyrica and worked my way up to 75mg 3 times a day. My tizanidine is 6mg twice a day now. I'm so sleepy its not even funny. This is almost pathetic. I'm too tired to do anything or be excited for the holidays. I wish I could take my kids and be smiling and happy. Its so hard because the pain is hard.

  • Hell no y'all

    Well, lyrica is doing nothing for me except make me feel like im drunk as a skunk. Walking around like im on a boat. Swaying back and forth. Lyrica was upped again to 75mg 3 times daily. Im not sure what to do. Ill keep trying but here I am awake at 3am with a horrible cramp on my right side that radiated up into my armpit. Its mostly on my back so I hope I just over stretched something and its nothing serious. I have so many meds its ridiculous. On another note. Ive been listening to Finneus (spelling) Billy Eilish's brother. A few lyrics have made a deep impression for me. So don't waste the time you have waiting for time to pass It's only a lifetime That's only a while It's not worth the anger you felt as a child. Don't waste the time you have waiting for time to pass It's only a lifetime That's not long enough You're not gonna like it without any love So don't waste it Only a Lifetime Song by FINNEAS The specific quote that caught me and reeled me in is the first sentence. Don't waste the time you have waiting for time to pass. That part right there really hit me hard. I couldn't tell you why. Im not good at expressing certain things . For your enjoyment. Let the lyrics sink in... https://youtu.be/b2KRc5ilYRc

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