Tag: disability

just so tired of it all

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, CRPS, depression, mood disorders

Just so tired of it all

I tried to stay off my ankle most of the day but it’s next to impossible. I didn’t wear the boot while in the house. I was in pain but it wasn’t bad until I took a nap. Now it’s excruciating. I am just feeling really depressed today. I don’t want to do anything. I half want to email my psychiatrist that I am doing poorly, but what is she going to do? There is nothing she can do. I am tired of reaching out and getting no where.

I sent a message to my doc last night for clarification about my ankle bones. I still haven’t heard anything. Now I am wondering if I will. I don’t get what is the point of sending them messages if they don’t respond. Just annoys me.

I am going to try and go to the grocery store tomorrow and get the stuff I need to make the chili cornbread casserole. My barbers want me to make it again. I would have gotten the ingredients yesterday but I was hurting too much.

I’m not sure if I will hear the game tonight. Last night was explosive as they got into another fight. They haven’t announced suspensions yet but probably will later tonight. The media keeps saying the “rivalry” is back. So stupid. I don’t know if I can stay up for 3 or 4 hours. I am so tired from being in pain and just dealing with the depression. I don’t know why it is hitting me so hard this month.

insult to injury

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, CRPS, depression, mood disorders

Insult to injury

Not having a good day. I fell asleep around 7 pm last night only to wake up at midnight and stay up till4 or so. I wasn’t in pain, I just couldn’t sleep. I had some waffles as it was close to 12 hours since I last ate and that seemed to settle me. I woke up when my med alarm went off, my foot was bothering me in the atrophied area. It felt like it was going to cramp but wouldn’t. I made breakfast. I was going to make some burritos but wasn’t feeling up to it. Standing was hurting me. I took a shower after I ate, which only aggravated my ankle/foot. I was still having intense pain so emailed my psych to see who to best to see. She said my PCP so I called the office. Of course my doc wasn’t available and I saw the nurse practitioner.

I played with my phone and decided to catch the bus so I could have my espresso and maybe write in my journal. I wore the walking boot because I couldn’t bear weight. It was good because any forward movement caused me pain. I was early when I got to my doctor’s office, though I had to wait an hour to be seen. I wasn’t thrilled about this. I wanted to do shopping but now it wasn’t likely as it was getting late. The NP examined me and said she thought I sprained a ligament. She said that I had weak ligaments because of my surgeries. I didn’t know what surgeries she was talking about as I never had ankle surgery. Just pissed me off. Then she said to ice and elevate it. You don’t use ice if you have CRPS. I said I would elevate it. I had to go down to X-Ray as she said I had pain on my bone (malleolus). She said she would send me a message when the results came in.

So I have a sprain and I am to be in the boot for a week. Just fucking great. It is going to wreck my back. The report of the X-Ray is that there is come changes to my medial malleolus not my lateral. I find this weird as my lateral malleolus (the one that is outward) hurts me more than my medial. It doesn’t make any sense unless the radiologist got it wrong. Going to ask them to look again because I don’t understand how I have pain in the opposite malleolus.

I then fiddled with my time until the Sox game. It got bad. The starting pitcher, Price gave up a lot of runs. Then the relievers did. The $31 Million dollar pitcher said he had a “sensation in his hand” causing him to pitch poorly. OK. There were benches cleared after an exchange of words during a second base play. I got tired of listening to one of the announcers on the radio that tends to piss me off regularly but I have to tolerate him because I can’t watch TV. I am in too much pain tonight to listen to him so shut off the radio. That is when the fun started. Sox scored some runs and it is now 8-6 evil empire in the 5th. And a friend just texted me the top of the 6th. Reliever gave up 2 runs. What a shitshow. I am going to bed. This day has been nothing but awful

Sleepy and Sad Day

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, CRPS, depression, mood disorders

Sleepy and Sad day

I’ve been up since 0630 because I woke up with side effects from the Invega. I had spasticity and spaghetti arms. I took my pain meds, half an Ativan, and BP pill. I couldn’t go back to sleep because I was so uncomfortable. An hour later I decided I would go to Starbucks and maybe write as I had time to kill, plenty of time.

The bus was late so I didn’t get to Starbucks till after 0815. I was still groggy as I ordered my espresso and breakfast sandwich. I then wondered how I was going to pay for my meal when it dawned on me that I had to open the Starbucks app to pay. Duh. Did I mention I was sleepy? The espresso took longer than heating up my sandwich. There wasn’t many people waiting for their drinks so I don’t know why 5 shots of espresso took so long. As I reached the table where my stuff was, I almost poured my drink out as I put my bag on the floor. Yes, I didn’t put the cover on the reusable mug. Great day I am having. I ate my sandwich and played with my phone. One of my friends had posted a pic of a doc that “sent a letter to the president” about how a person in his ER had tattoos and was smoking brand name cigarettes. Then he said should my tax dollars go to this person because he was on Medicaid. I thought it was very judgmental. The doc in the picture was white. I can only assume the patient was a POC, but I could be wrong. I felt like saying why should the patient be denied health insurance because of what he smokes and that he or she gets tattoos? It really irked me.

I finished my breakfast and took out my journal and notebook. I opened the journal to write for a bit as there was some stuff I wanted to write. I kept glancing at my notebook, wondering what I should write. I was still wondering if I should continue with what I had or start something new. I am totally frozen with this. I know I have to solve it if I want this damn story on paper. Thing is, I wasn’t sure where I was going when I first wrote, so picking it up again might lead no where. I don’t know. I only wrote about a page so it can go anywhere. I just got to move forward some how.

I was getting sleepy. A couple of young people came in Starbucks looking for an outlet. They had another brand of coffee. The guy’s pants was almost to his knees. He had a large overcoat on which was basically preventing everyone from seeing his underwear. I guess they found an outlet to charge their phones. They sat at the opposite end of where I was sitting. I just missed the bus home. I was cold and wanted my bed. The wind made every thing colder. I had to wait an hour for the next bus so I just wrote in my journal.

I came home and tried to snooze but my mother was watching the Price is Right and it was fricken loud. I heard every bell and whistle plus the noise of the audience. It was difficult to sleep. I gave up around noon when the show ended. I had to leave in a half hour to catch the bus to see my therapist.

I brought my therapist some muffins and we talked, mostly about my father. His anniversary is at the end of the month. Hard to believe two years has gone by. I still remember everything the week he died. It all happened pretty fast. I got kind of sad but I was too tired to let it affect me. My therapist said I sounded groggy. I was. He will be off next week so I will see him the following week.

I came home and just wanted sleep. I was still very cold despite the temps going up 10 degrees from the morning. I read Twitter to try and find out about Xander Bogaerts as he hurt his ankle. There wasn’t any new news. I got into bed and for the first time, I wasn’t warm under my fleece blanket. I must have laid there for about 10-15 minutes when my lower leg from the knee down felt like it was going to cramp. I took the other half of Ativan so I wouldn’t cramp. I waited for it to try and settle and then tried laying down again. My ankle was hurting really bad but I didn’t want to sit up again to take pain meds. I was just getting settled when the door bell rang. My mother was screaming for me. I didn’t care. I wasn’t going downstairs. My foot and ankle hurt too much and I knew if I stood, it was going to flare. I don’t know why my mother didn’t just call me on the phone. It turned out to be my books that I ordered. Fricken UPS had rung the bell.

I checked Twitter after sleeping for about 1.5 hours. My stupid med alarm went off and scared me to death. I wanted to go back to sleep but knew it was going to go off again in forty-five minutes for my night meds. Then I heard Wheel of Fortune so got up. I desperately needed food as the only thing I had eaten was the sandwich from this morning. I had something to eat and found out about Bogey. He cracked his ankle bone. Great. That possibly means 4-8 weeks out. I hope he doesn’t need surgery. He will be out for the season. I feel really bad for him. He had hurt his ankle while chasing a foul ball near the Rays dugout yesterday. I hope he heals quick. I am sad to see him hurt like this the beginning of the season. He was really getting into a groove. I don’t know who will take over his position. It won’t be the same infield with him gone for a while.

My Story of CRPS, Complex Regional Pain Syndrome

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, CRPS, depression, mood disorders, suicide

My story of CRPS, Complex Regional Pain Syndrome

I have had complex regional pain syndrome (CRPS) for almost eight years. I don’t remember exactly when it occurred. I would have to go back to the first podiatrist I saw in 2010 as he told me I had a sprain. The sprain occurred after I had a bad few days of really awful spasms in my foot. The spasms were so bad that it caused my foot to turn outward and even though I manually turned it in to stop the spasm, it turned right back. I was in agony afterwards. The meds, quinine and Zanaflex that I was taking did nothing to help these spasms. I had a nerve injury in my leg nine years prior and the same nerve injury four years before. I won’t go into that because it is another complicated syndrome.

I don’t have the typical presentation of CRPS. I don’t have the discoloration, temperature changes, swelling, etc. I just have pain and a little bit of swelling that causes my veins to pop out on my foot when I am in a flare. It makes the half of my ankle that is affected look bluish. I went to many doctors in the Boston area as well as in Boston. I must have seen specialists of all kinds, orthopedics, ankle surgeons, podiatrists, neurologists, physiatrists, etc. No one could really tell me what was going on. My neurologist that I was seeing for migraines and my nerve injury thought I had CRPS and so did at least two physiatrists that I saw. My former PCP was not convinced as he thought it was some mechanical thing going wrong with my foot/ankle so he sent me to more doctors that didn’t have a clue what was wrong with me.

During this time, I was working two different but the same type of jobs. I was working as a lab assistant in research and in the clinical labs. I worked anywhere from 40-50 hours a week. When my foot and ankle were bothering me, that kind of hindered my work. When one of the physiatrists sent me to a physical therapist to be evaluated for an AFO, I chose one job as moving around the two labs was difficult. I chose the clinical lab as I have been there the longest. But that was short lived as I couldn’t stand the pain when I came home. It was so bad and nothing was working except the opiate meds that I was taking, which I couldn’t take while working because it affected my cognition. Eventually, I had to put in restrictions as just walking around the lab was getting harder and harder to do. Because of my nerve injury, I couldn’t do certain things and then with my foot/ankle being impaired it made things harder. I ended up on forced medical leave and had to apply for long term disability and social security disability. Fortunately with all my medical records, I got both.

The pains that I had at first had changed. The pain is always changing during a flare. If my foot got cold due to the weather or even from the AC in my room, I had to wear thermal socks even if it was 90+ outside. Then the burning would happen once I got warmed up. It was terrible. I had to take one pain med for the physical pain and then another med for the burning pain. As recently as last night, I had several different pains at once. I had the feeling like a wire was around half my ankle, strangling it; a coring feeling that something round was trying to scoop out my last two metatarsals (foot bones) in my foot; there was stabbing along the tendons from my ankle down my foot in an L pattern; and the last three metatarsals were being played like a xylophone. There are other pains too. I sometimes feel like my foot is being crushed, the “glob”, which is an area of my ankle that has muscles, tendons, and ligaments are just throbbing. My bones ache terrible. My malleolus (ankle bone) was also being hammered severely last night. That is the worst pain that I have ever felt. I do not like bone pain because I have to take a strong pain pill for it and that pill can give me a lot of side effects, mostly constipation.

For some reason, only half of my ankle and foot are affected from the middle part outward. The inner part doesn’t hurt at all, though sometimes my big toe will hurt. No one has a reason for this. One doctor has said that it is a nerve injury and now my current PCP thinks that is the case despite my bone scan saying I have CRPS. It is very frustrating to deal with pain like this that just keeps you up at night or wakes you up in the middle of the night because your pain meds have worn off. All this week I have not had good sleep and have gone to bed between 4 and 6 in the morning. I tend to sleep all day, or most of it. It’s hard planning stuff because of my pain. I don’t have much of a social life. I don’t go to family gatherings or parties because I don’t know how my pain is going to be. Just taking half a step is enough to set off a flare. Or any type of movement can set it off. There have been many times I have been sitting in my bed, playing on my laptop and moved a little to get comfortable and wham, I am hit with pain. Another things that CRPS likes to do is after fifteen minutes of lying down or so, my foot or ankle will “explode” with pain. All I did was lay down. That was my crime. This is a terrible condition. I have thought about suicide many times during a flare. Fortunately, while in a flare, I am unable to walk so going through with something deadly is not going to happen. I tend to put it off till the pain goes down, but usually the morning comes and I no longer feel suicidal. I live another day.

I take small doses of short acting opioids throughout the day to manage my pain. My PCP wanted me to see a pain doctor so after four months, I did. He didn’t think I should be treated with pain medication. According to his notes, which I requested, he says I just need physical therapy. I was in physical therapy for three months. My flares were worse and the stress of going to the appointment and trying to keep up with home exercises was causing me more pain. I decided to quit PT until I had adequate pain control. I am still waiting. A month ago I last saw my pain doctor. He said he need to collaborate with my PCP and my psychiatrist then get back to me. I am still waiting. I honestly don’t think I will be treated with pain medication. In his notes, he has stated that he does not think pain meds are for me, though doesn’t state the reason. I am too exhausted to care. I pretty much decided to continue with what I am currently taking. I have made the decision to end my life at a specific time. No doctor wants to help me because the opioid epidemic is all based on lies and deceit. More chronic pain patients will end their lives or die a sudden death like Dr. Forrest Tennant has written about. The suffering will continue as long as the DEA continues to threaten doctors and keep them from being doctors.