At a complete loss
I had requested my medical records from the pain clinic to see what they said about me. Mostly I wanted to see if they got things right and then see what else the fellow wrote. Basically, they don’t want to treat me because of excuse after excuse in opioid therapy. They really didn’t offer much in ways of treatment, other than to continue with PT (don’t see that happening if my pain is not controlled!)
I feel defeated. I see my psychiatrist tomorrow and I will tell her I plan on seeing an assisted suicide doctor. I don’t see what choice I have. I do have my second appt with the pain clinic but at this point, why bother? They aren’t going to do anything to help me. It says as much in their notes. I am not idiot.
I got my medical insurance invoice. The premium is now over $200 I have to pay every month. Just lovely. I knew it would be as my medical (not including vision and dental) is $198. Unfortunately, I need this in order to pay for my prescriptions.
I know my family and friends and bloggers will miss me. I wish I could stay. I just can’t bear the pain anymore. I was up and down stairs all day because we had the plumbers here to fix the shower. I also had to tell my mother what they were saying because she is hard of hearing. Even though I took a nap, I feel like shit. My ankle and foot are so damn angry at me because I took a shower. I had to. I haven’t had one all week! This is getting ridiculous. I was used to shower every other day. Now it’s maybe twice a week. Yeah, my quality of life is so good. Maybe I should cash in my pension from the hospital so my family won’t have to worry about funeral expenses. I know how hard it was when my father passed. We had a whopping few hundred dollar inheritance after all was said and done. Think I bought groceries with mine. I live the life. HAHA.
I know my psychiatrist is going to put up a fight with me. I am not looking forward to it. I hate arguing with her. But she is for life. She has done her best to keep me alive all these years. Just wish other doctors were as dedicated. She has been my biggest supporter, even when I thought there was nothing left for me do, as I have many times before. This time feels different. I don’t know when. I think I shall start the process of getting my pension and once I have it, pay off all my debts then give the remainder to my sister to “hold” for me. I know what a pain it will be to access my accounts once I am gone. It was hell just to write a check when my father passed.
I didn’t have a good sleep. I woke up nearly every hour from 330-630. I was in pain but I was too sleepy to turn over to take my meds. Then by the time 0630 hit, I was really hurting so I couldn’t ignore it any longer. I was feeling kind of blah and didn’t really want to do anything. It was cold out so I took my meds and then went back to sleep for a few hours. I got up around 1130. My ankle was throbbing. I knew I should have something to eat but I didn’t know what to make. An hour or so later, I decided to order something.
After I ate, I went back to my room and holy pain! My foot turned into a block of ice and was so painful. I was feeling really down. I wanted to call PT to let them know I was not going back but I wanted to nap. I laid down and within fifteen minutes, my damn ankle bone went berserk. I decided to take the strong pain pill as I didn’t know what else to do and I couldn’t take my regular med for a few hours.
Today is the 17th anniversary of getting Cauda Equina Syndrome. I had lost feeling in my feet and had foot drop. My left leg was also numb. I was 25 and couldn’t walk or stand. It was a very difficult time. I had no idea if I would regain the use of my leg and it took months to walk unassisted. I was lucky that it was caught early and I did regain some mobility. I wasn’t 100% but that was okay. The shock of it is still with me to this day, made worse by being disabled by another condition that could have been because of the Cauda Equina Syndrome. I have no idea if it was or if I would have developed CRPS, Complex Regional Pain Syndrome, anyway. I still feel sad that I am no longer able to walk far like I once did. Even walking a block or two is difficult some days.
Let the imagination run
I had a great therapy session today. I told him about the appointment with the LGBT doc and how I liked him. I also told him about how I wasn’t sure if I have been putting too much pressure on myself by wanting to be the person I was before I was disabled. It just seems like I am unable to keep up with my appointments and just doing daily activities, such as making meals and stuff. My pain is so unpredictable but this weekend, my pain was manageable for some reason. I think the appointment stress of meeting with the LGBT doc and moving forward with my transition was weighing on me more than I realized.
We also talked about my writing difficulties. I told him about the story that has been in my head the last few months and the difficulty of writing it because of how I felt about it. I also voiced my trouble with setting time aside to write. Sure, I write my blog every day, but some days that is tough. I get distracted by my phone or the internet or social media. Some days I start a blog and lose my concentration because I don’t know what to write and nothing is coming to me. Then there are days where things flow and I can get it done within an hour or so. But I want to get this story out and it has been burning for far too long on the back burners. I want to write it out but I am scared that I am going to go nuts. We talked about it, having a back and forth conversation. It was such a relief to talk about my writing and how to go about it. I felt validated and supported in what I was doing.
So as I was leaving, I felt pretty good, like a weight has been lifted. I went to Walgreens to buy some new composition notebooks. I have two that I bought maybe a year ago but I wanted to get some more (I have a thing for these kinds of notebooks like I do pens). I was thinking about the session on the way home and how I was going to implement writing time. I honestly don’t have a clue. Getting the notebooks and putting them in my bag is a start. I felt like buying more pens but, I uh, have like 5 boxes of pens so fought off that impulse. I am kind of excited about this and hope that I can do it. I do better writing with pen and paper than I do trying to write on a laptop. Typing up what I write is challenging as sometimes I can’t read what I wrote or what I wrote didn’t make sense. He said to let my imagination run so I am going to give it a go and see where it gets me. No one has to see it. He’s not like my former therapist that wanted me to share everything with her. It is just for my benefit. And maybe the crazy flashbacks will stop once the stories are out. I sadly realized that it has been 30 years since all this was forming in my brain. I do have to watch one episode of Star Trek: the Next Generation, though I don’t know when I will do that. It’s kind of like the base of when the story started and it took off for ten years and then stopped abruptly because I got sick.
I came home. I must have taken about two or three steps after I stepped off the bus for my ankle to act up. I limped home and now my bones are aching. I am trying not to take the strong pain pill as I just took my regular pain med when I left my therapist’s office. I am so tired of being in pain just by walking. It is so frustrating.
A friend had emailed me about her frustration with the game last night. I shared in her grief. I wrote a response. I still am thinking about what to do with physical therapy. I see my PT Friday so I have a few days. My gut is telling me to stop and I think I am going to listen to it. I will tell my PT when I see her. I just don’t think continuing to go is going to benefit me and the stress of going is not helping me or my pain.
LGBT appt and other things
I woke up early this morning to see the LGBT doc. I was nervous about it. I got there and I had to have them change my name. I thought I had my insurance card on me and I didn’t. They had the right info though so didn’t need it, it was just my name that needed changing. I liked the doc. He answered my questions and said that because I had a history of bipolar, he needed to talk to my psychiatrist and therapist. He also said that it will be a few appointments before I get started on hormones. I already figured that. He said that testosterone might increase mania. He asked if he wanted to transfer my primary care there and I was hesitant. I told him I was on pain meds and he said he had no problem taking over. I am not happy with my current PCP so I took a chance and said okay. Now I got to let my PCP know he is fired.
I have an appt with the new doc in seven weeks, which is more than what my pain meds would be for another refill. I would have to keep my current PCP a little longer. I see him the week before the appt with the new doc so I will tell him I am planning on transferring then.
I have been in so much pain since I came home. Because I was up early, I have been trying to sleep but dammit, half my ankle and foot go berserk every time I lay down. The last time, the pain was so painful and indescribable, I just started crying. The pain then caused my shin muscles to cramp up. I needed to get the heat pack and of course my bladder forced me downstairs because it had to be emptied. My mother was in the bathroom so I had to go down another flight of stairs to use my sister’s bathroom. There was no way I could hold it long. When my bladder says it is time to go, it’s time to go.
I hope I am not up all night in pain. I am so tired of sleepless nights. I might try finishing the baseball book. I just don’t know if I have the brain power. I feel so foggy from being sleep deprived. I think tomorrow I am just going to rest. I am not going to do a damn thing. I’ll try and change my sheets Sunday. I might make the zucchini bread then too. I don’t know. I know that anything I do gives me pain. A member of my support group says I should walk when in severe pain. OK. That doesn’t help me.
When I came home, it was freezing in my room because it was windy out. I had tried to nap but the wind was so bad it was rattling the doors in my room, and they were closed! It was scaring me so I had to close the window. Now my room is hot again. My foot has now gone from indescribable pain to burning. I really don’t want to take the Neurontin because I think it causes dizziness the next day. I don’t know why it is causing this now as I have been taking it for years. I only took 600 mg last night. I usually take more.
One thing that stands out from the LGBT doc is that he asked me if I had any Narcan. It is a drug used to reverse the effects of opioid overdose. I told him I was never prescribed this med. He said he would as I could accidently overdose. Although I have often felt like taking a handful when my pain is bad, I don’t take more than I should. I take my two tabs every six hours or so follow by the strong pain pill if I need it a few hours later. I am very careful with my meds, all of them, not just the opioids I take. The only med I might take more of is the Neurontin. But I haven’t been doing that lately because my appetite is out of control the next day. I have also gained a lot of weight the past two months. I hate it. I feel so yucky. I hate myself for letting myself get so fat. I’ve been trying to cut back but there are days when I only eat one meal and then there are days where I am always hungry. I can’t win with these meds. The testosterone might cause weight gain too. I don’t know what I am going to do about that. It could just be more muscle than fat but in my mind, more weight just is an issue regardless. It’s not like I can go to a gym and workout. I would love to go back on a treadmill or even walk to the train station like I used to as either one is about 1 mile from my house. I really miss walking. If you are abled bodied, please don’t ever take walking for granted. You never know when it will be taken away from you.
I have serious mental illness that disrupts my thoughts and shifts my mood to hopelessness and suicidal in an instant. I lose motivation to do things. Just getting out of the house is hard. 2 this condition is flat out driving me insane.
I asked my physio what are the goals of therapy and she laid it out for me and stressed I need to be doing the home exercises to regain what I have lost. It is stressing me out that going to my appts and then having to rest the day after or two is not working. I’m still in pain. She wants me to go to some functional program. But it takes full commitment, 2 or 3 days of being there 8-2pm. I honestly don’t know if I can do that. Some days I can’t get out of bed because I’ve been up all night in pain. Monday’s are worse because I have to walk to my therapist’s office. I just don’t know what to do. I just want to lay around the house and go to Starbucks and write. But pain is limiting me to even do that. I’m not adequately controlled with my pain so how the hell can I do these exercises if I hurt. Just fed up and want to quit everything.
I don’t know what to do anymore. My PT emailed me with goals and wanting me to go to a functional program at a different SRH location. My depression makes doing anything hard. Pain compounds this. I haven’t been doing much with the home exercises because I am exhausted after going to an appt the day before or even going to PT appt. PT is saying I need to commit to the therapy to regain function (haven’t had function in my ankle for 17 yrs mind you) and decrease fatigue in my foot/ankle. I’m starting to feel like a failure but I am not getting adequate pain control and I don’t know if I ever will. Just making breakfast today and taking out the trash hurt me. Making the squash killed me. Going up and down stairs hurts every single day and I do that a lot. Add the PT and it will overflow me. I feel like I am drowning. I am out of the house at least 3 times a week. I just can’t keep up. I move I hurt. I don’t move I hurt. How can I win?
If I don’t get adequate pain control soon, I am just going to end it. Why bother?