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I have been in a lot of pain the past few days. I cant do the laundry without my body hurting and making me stop. I feel like im going in slow motion if that makes sense. Its like my body is trying to go slow on purpose so not to do anything that might make me hurt myself. Like fall. (Which I've done twice the past couple months) My blood work came back with positive ANA. Being referred to a rheumatologist now. I wonder how long it will take for me to see one. I am struggling because I need to stop working. But we don't have the money or resources to just not have me have an income. The stress and anxiety of it is making me feel worse emotionally and physically. I dont think my family really understands how bad I feel. Which is okay in my opinion. I dont want my family to know when I am at my worst. Especially my kids. Last night I dreamt I was in pain. In pain in the exact spot, except I was asleep. I couldn't get away from the pain when sleeping...that is why and how I get as low as I do.

Several months ago I realized dropping things was becoming a normal thing for me. I started to tell myself when I hold things..."Do not drop it, do not drop it". Thats when you know you probably should go talk to a doctor. It's really frustrating because I really hate looking like im trying to literally juggle everything I try to carry....

Its been hard to stay positive. Especially if most of your life revolves around pain and sickness. So many things are missed out on. It is probably why I am not good at just hanging out and enjoying myself. I dont even know what that is.... I've been trying to put a smile on my face. But im worried. The next couple decisions I make are going to have a long lasting consequence for me and my family. I hope its a positive outcome...but it can take a while to reach that level. I've been talking to my therapist weekly. She is helping me realize I AM physically sick. And there was nothing I could have done to stop it. She is trying to help me like myself by seeing through the things I hate about myself. I used to be so much more carefree. Now I look back and it makes my stomach twist and I find myself shaking my head. Decisions I have made in the past, the good and the not so bright decisions. Maybe the illnesses I have were going to show themselves at their strongest regardless of my decisions in life... maybe I should not blame myself. I guess it doesn't help anything if I do... I cant help but feel guilty for being around my family, knowing I am not the most positive person. I wish I was though. How much would I pay to have these guilty and negative feelings just go away for one day? I feel like I am failing my family. Sometimes I think I dont deserve my kids. They are so beautiful and bright and loving. Everything I wish I had been at their age. By the time I was my sons age (actually a year younger) I had started having the chronic pain I would find out was interstitial cystitis 6 years into the future. Those 6 years where the worst years of my life. Of course a teenage life is already complicated for the most stupid reasons. How ridiculous most of us act as teenagers! The unknowing about the world. How dark and broken it is. Most would say we are living during the best time because we have all this technology and able to travel, etc. I actually wonder how much fresh air I would have gotten if I was born during a century in the past. Maybe even two centuries. Could you imagine? We wouldn't know what we were missing. Life would be laid out with the highest priorities we have taken for granted for hundreds of years. To be born say...10,000 years ago. Everyone's priorities would have been different. I would think it would have been less superficial. Everything you did had a reason, had a purpose. I am trying to get to those basic necessities. I am trying to let go of the superficial ideas of how a family should be, or how I should be acting. I do have a chronic pain disease. I should wear it with pride, and maybe laugh in its face and tell my broken and scared part of me, it will be okay. Its just so scary to take that leap and let go. I am working on it...I am trying.

This morning ive felt what are (I think) nerves going haywire. Right now I feel a sharp shooting pain in the middle of my right forearm. And the arm itself feels heavy and a bit shakey. The new muscle relaxer helps but it sedated me bad enough I feel asleep within 20 minutes and I dont even remember it. Its great it is helping..but def not something I will be able to use during the day.

So it went well! I am scheduled to get an EMG. I hear it can be painful but I think I can handle it after all these years being in unpredictable pain. I am on a new medication to help with my muscles and tendons that are inflamed. He has NOT ruled out multiple sclerosis. I feel like im a broken record when I see a new doctor. Makes me embarrassed/ borderline ashamed. At least he did not give me the line that I HATE. "You are too young.....". Blah blah. If docs were not looking at my age I likely would not have had to wait so long to figure my health problems out. Maybe I would have never gotten to the point I am today. On some good random news : Our Xmas tree is too high for me to take down so we just need to dust off some cobwebs and turn the lights on. Walla!

FINALLY...getting to see a neurologist tomorrow. I know im having nerve problems. Stuttering and random pin pricks, spasms in my throat through out my body. Crossing fingers I get answers. I wanted to share some happy news. So there you go!

My pain management doctor suggested exercising in a pool. I wish I had access to one inside. I love swimming too, its funny because I love learning about the ocean but I will not go on a cruise or a boat into the ocean. Nope nope nope. So we have a deep and fairly long tub...im going to try to see if I can at least try kicking my legs for exercising. Stationary swimming ha.

Well I was officially diagnosed with fibromyalgia. I have been told that I had it about 20 years ago but I didn't know if it was still just a name they threw at me because they didn't know what to do with me. I was given lyrica to try. After talking to patients who take it, and research I dont think I am going to try it. The side effects sound like they are not worth going through. Not to mention nearly all the research and people I have talked to have gained a lot of weight. If I gain more weight I will be in more pain. Lyrica just sounds to scary for me. A few times now it feels like water is running down my leg but then I realize there is nothing there. It is very frustrating. What is going on with my nerves!! I really really hope the neurologist has a cancelation next week. I really need to see him.

Well, I ended up taking FMLA after talking to 3 people in my medical team. (I call it a team now). Ive been in so much pain it is hard to walk up right. My shoulders are tingling and feel numb and a horrible sensation that is really uncomfortable. I have to wear loose loose clothing so it doesn't bother me as much. My concentration has been terrible. Esp if I have to take a muscle relaxer, etc. Im so tired. Getting things put together and in order before I leave work today. For 15 years of my working life I have been negating to take myself to specialists until its so bad I cant function. I have been worried about others situations if I am gone from work or any situation where I have a large roll to play. My therapist and I have been talking alot and she convinced me I need to take this next month and make sure I get to all my doctor visits and be gentle on my body. Im hoping to try some new medication. I will have time to test it out without side effects causing me to miss work, etc. I always tell people you can't take care of anyone unless you take care of yourself first. That is what I am doing now.

During my appt with my therapist i realized all these years I've been trying to make sure my health does not interfere with my work. I've just recently been able to go to the doctor and actually try to fix what is wrong. Ive slowly built a medical and emotional team of doctors. Ive got a chiropractor, physical therapist, mental therapist I see at least once a week, and a psychiatrist I see at least once a month. All of them are rooting for ME. Ive never NEVER had this kind of support before. Its scary to get my hopes up. Because for so long when I was younger and legitimately sick, adults were the liars in my life. The doctors I saw, some of the school teachers I had, family... and this is not unusual. Chronic pain survivalists are just that, survivers, and still surviving. I can guarantee you if there were no sympathy or families or support, there would be a huge increase of suicides. How can someone justify living a live literally of torture, and not want to end that torture. For every doctor I saw that could not or did not want to help me, created a life for me that amounted to torture, in order to live. We always hear and read about torture being inflicted on people to get the truth out. It makes me realize my body has been tortured and all of my side effects are for me to scream, I NEED HELP! My body is telling me I am being tortured inside, and I need to fix it, or my mind will start to go to the last resort option. My body is in constant flight or fight mode because of this, thus creating my anxiety to the height it is now. I can guarantee you, if i didnt have chronic pain, my life would be so different. Ive had so many dreams. That will forever just be dreams at this point, and I am coming to terms with they are just dreams.

Well, last night was horrible. My legs ached and felt like they were on fire. In my knees it throbbed and pounded with pain. I took the last muscle relaxer I had and some ibuprofen. I didnt know what else to do. I woke up with my cheaks red and feel like a rash. Its hard to catch in a photo but on both the sides of my nose it's red and rash like. No actual raised bumps. Just red and irritated and feela inflamed.

A day in the life of a Chronic Pain Survivalist