Another day of excessive heat, another day in my room
I wish I had energy to go with being cooped up in my room. I might actually get some stuff done but I have no energy. I again didn’t sleep or slept with weird dream of masks, gaming, and social distancing. I dreamt weird things and the dreams seemed to go on forever, like I was stuck in them unable to break free.
I finally got my pain meds from the pharmacy. My brother in law picked it up for me. I am back to being medicated. The barometric pressure hasn’t really been up nor down but the humidity is what has been bringing about pain waves. My ankle has been so sore. It has been alternating with severe pain. I need to wash my face and neck and chest because I have a fricken breakout. I woke up with three zits per side of my next and my chest is just a disaster. I got two under the skin zits that hurt so bad on my face where my beard was. I had to shave it off. I feel cleaner now and less sweaty.
Ankle has started up. I shouldn’t have said anything about it a little while ago. Feels like someone is digging in the side of ankle right at the joint. No matter what position I put it in, it hurts. CRPS is a bastard. So I am trying to write another blog for the second day in a row in wicked bad pain. Yesterday I was able to write without pain and more than 1100 words. My word count right now is 276 so I have some typing to do. I just don’t know if it is worth it. I feel so down with every blow of pain my ankle is giving me. And it isn’t just my ankle. The foot is also hurting. Feels like someone is trying to grab the metatarsal bones out from where they lay and rip them out.
I need a haircut. I wanted to get it done Friday but hell was unleashing so I stayed in. I was really tired that day anyway. Today is Sunday so my barber is off. I will try and get my hair cut tomorrow. Might be a sacrifice to the heat gods. I got another heat advisory warning and nearly died. WTF is it going to cool down??!! I am staying in my room until it is cooler. The house wouldn’t be bad if we had AC but we don’t so it’s murder. I am really struggling to write today because of pain. I just can’t get a clear head. I ended up washing my face and chest because I wanted to put the acne stuff on them. My neck has zits too, which hurt. I hate when they are on nerves. I just want to sleep right now. It is almost med time so I will wait until then to turn in. I have been turning in early the past few nights but it hasn’t helped me sleep better. I just have weird dreams about Covid and masks.
I am hoping to get called from uro to have urodynamic studies done. I called last week but no one returned my call. I also put in a referral for the pain clinic seeing as things are opening. If not then maybe I will get a virtual visit with someone. My ankle has been a real pain lately and if I can get a handle on the pain I can increase my physical activity once this hell has frozen over. I am not leaving my room except to use the bathroom and eat. And shower possibly, which will be the goal tomorrow.
Appointment with neurosurgeon
I took a shower today because I wanted to get the loose hairs from my haircut out of my head. I also didn’t want to stink. It was hard because I was exhausted and the whole process of showering made me more tired. I couldn’t nap though so I just rested in bed before I had to leave for my appointment.
I was thrilled my surgeon said I didn’t have to have another surgery for the fluid. He is going to keep an eye on me and my white count. I was to have bloods done today but the lab was closed so I will have to go tomorrow or Friday. Depends on what my energy levels are tomorrow. I am still exhausted so I hope that I can sleep well tonight. I am to contact him should something else arises. I am cleared for PT so I will be making my Ride appointment tomorrow for the appointments that I have. I am so glad I can start PT again. I am so deconditioned and even he said that I would be as I haven’t done much since surgery. This complication has wrecked my recovery.
Right now I am really tired and want to go to sleep but it is too early. I go to bed now I will wake up around midnight and then be up for a few hours, totally throwing off my sleep more than it already is. I will wait till my meds kick in some and I am totally brain dead. I also got to keep an eye on my bladder as it hasn’t been functioning the way I would like it lately. I am back to voiding on my own but I don’t know how long that will last. I haven’t felt like I have an empty bladder when I do void so I probably will need to cath before going to bed. Back is killing me so when I am finished blogging I am going to lay down and just read for a bit. I haven’t read since Friday. I wanted to finished the Linehan book this weekend but my brain had other plans (do nothing apparently!) I want to start the Dante Club by Matthew Pearl. It seems like a good book to read. I have read his other books and like his style of writing.
I goofed on my Powerade order. I accidently ordered the “zero” kind of white cherry. It has sucralose in it which I do not like. It is drinkable but I rather have sugar in my drinks rather than the fake kind. I have to be careful when I order more next time. I had dinner and it was a good piece of steak that I ate. Why am I still hungry?? I might make a burger.
All day my left leg has been hurting me. The only time it didn’t hurt was when I was meeting with the surgeon. Damn thing. I don’t know why it is angry today. But my back is killing me as well. I hate that I am in so much pain. Hope that my night meds help ease some of the discomfort. Surprisingly, my CRPS ankle/foot has been behaving. That is the weirdest thing that has been going on the past few weeks. I don’t know if it is because something else is going on with me or what but I will take the pain free days. Just hope I haven’t spoken too soon. That will suck.
Life worth living, the book
I have been reading Marsha Linehan’s memoir, Building a life worth living. Today I learned something that is spot on with how I am. I have what is known as “apparent competence”. It is when you basically show that you are functioning but inside you are dying from pain. I love this term and I highlighted it. I think I am going to learn from this book what I haven’t been able to in others and that is to know myself better. Dr. Linehan’s life and mine is very different but we suffered the same kind of pain that made us want to end our life. I am still thinking of ending my life while she has moved on. I just can’t seem to do that. I think if I didn’t have chronic physical pain, I might be able to live. But with it, I don’t think I have a chance.
I had a zoom call with a dear friend. She noticed my beard and commented on it. She loves the transformation that I am going through and it made me feel good as she knew me before I started my transition and came out as trans. She has been so supportive and I love her for that. Not too many close friends are as supportive as she is. Most don’t understand and won’t try to because they are stuck in their ways, the black and white thinking.
I went out today. I had to go to the pharmacy and pick up my meds. The damn pharmacist was an idiot as he said he couldn’t fill it then when I told him it was a 28 day, he said he could. I had to fill it today or I wouldn’t have meds for this evening and going to Tues would be terrible. I hate that I have these restrictions on my pain meds. It really sucks to be in this kind of a bind. Back and ankle have been switching off hurting today so I was glad I went out for a bit to stretch my legs. I have been in bed since then. I just can’t bear the pain because my back hurts so much. The muscle relaxants aren’t working as well as they used to. I don’t know if I have developed a tolerance to it or what. Just sucks because the cramps are so bad I can hardly stand up more than 10 minutes.
I have been trying to keep my fluid intake up because it is kind of warm these days. It has been hard because I haven’t had too much of a thirst. My bladder function is dependent on the fluid intake so I need to drink in order to go. Otherwise, I have to cath and I would prefer not to do that. I had to last night before bed because it was more than 5 hours and I wasn’t getting any urge to go despite drinking a lot. It is a catch 22 with the bladder. I can drink a lot but not have an urge or drink the same amount and get an urge. I have no idea what causes what and when. It drives me crazy.
I need to cut my fingernails. It is the one self-care thing that I absolutely loathe. I wish they didn’t grow so damn fast. Seems like I got to cut them every damn week. But I like when my nails are short. That is the only good thing about doing the deed.
Did too much and paying for it
Yesterday I did grocery shopping and showered. Today I went to the pharmacy because I forgot to go yesterday. It was hard. I walked half way there only to realize I left my mask at home so I had to walk back. I had to rest because I was short of breath. I got my meds and then collapsed when I came home. I have been sick since 11 am. I have tried to keep up with eating and hydrating but it has been difficult. My bladder is giving me signs it is not completely healed. I have been experiencing some hesitancy to go and then some starting and stopping when I do go. I am frustrated. I then had to go again an hour later and I had a full bladder when I cathed. So I can’t rely on voiding anymore. I usually cath at least three times a day but now it might have to be more. We’ll see. It is still early and I am still drinking to keep myself hydrated but it is hard when I am not thirsty.
I got headaches, palpitations, and high heart rate going on. I have been lying flat but I couldn’t stay down. I was too antsy. I should have taken an Ativan to calm down. I think I have to drug myself in order to get the much needed rest I need to get rid of the fluid. My friend said that it is like a bruise. Another person said that I need a drain. If I have to have surgery, I think that is what is going to happen. I am kind of scared of surgery because I already have arachnoiditis and I don’t want it to get worse or add to what I have. I am starting to have immune response to surgery and that isn’t good. Arachnoiditis is sort of like an immune response to surgery. My friend said that it will not go away. I am stuck with it but I need good pain control. Trouble is with Covid, I am not going to be able to see the new pain staff my pcp wants me to see and I know that I need an increase in pain medication. I don’t want to switch meds. I just want to increase what I have as the non-opioids are not doing much for me in terms of pain control. I have been on a stable dose of meds and just haven’t had too much relief except for the extra I take when pain is really bad. It really isn’t an “extra” as I don’t have much room to take more than I need on any given day. I hate that I sometimes have to ration my meds because otherwise I will run out before I can get a refill. It isn’t all the time that this happens. But with recovering from surgery, I have been in more pain than expected.
I want to write more but I need to lay down. Head is pounding and vision keeps getting blurred. I think if this keeps up I might have to go to the ER. I hope not but I don’t like these symptoms I am having and my gut is telling me something serious is wrong.