Sunday Blog 30

Sunday Blog 30

I’ve had a decent day despite waking up in pain. I honestly didn’t know if I would be able to see my aunt later in the afternoon because the pain turned to spasms. Meds knocked me out for the rest of the morning. I woke up around noon and made coffee.

After coffee, I got dressed and met my sister. I couldn’t get a hold of my middle sister so she didn’t come with us. We had a good visit with my cousins and aunt. She has dementia due to Parkinson’s disease. It was hard because one minute she knew who I was and the next she didn’t. She asked the same questions multiple times and asked who I was. In one minute she could speak clearly and the next it was all mumbles. It was pretty sad and when my cousin was explaining her condition to me, I thought she was going to cry. After the visit, I wanted to cry. It’s so hard seeing her this way and I know it’s taking a toll on my cousins (her son and wife). My cousin said she will be going to day care starting tomorrow. I hope it works for her, just to get her out of the house for a few hours and socialize.

I’m glad that I shaved my goatee off because my aunt flipped out over my haircut. She would like the hair on my chin. I was debating it but in the end I decided to cut it off. It was getting a little unruly anyway so just as well. I will grow it again.

One of the groups that I joined on Facebook just shared an article about two men that have CRPS. They have my symptoms down to a T and experience what I do every day. I feel like a weight has been lifted off my chest because I no longer feel alone. Most of the people in the FB group have color changes in their ankle/foot and I don’t, so I just thought I didn’t have the pain syndrome but some variant of it. But when they were describing it, it was what I experience nearly every single day. I am going to contact them and see if I can find local support or at least be friends with them. I haven’t connected with anyone on the Facebook group. There are a lot of women and they just seem to post their pics of the color changes or massive swelling. I don’t have severe swelling but the pain is unreal.

I am wicked tired from my visit. It was just emotionally exhausting. I can’t imagine how it is for my cousins on a daily basis. It’s so hard. My sister went food shopping afterwards and that always makes me tired. My mother needed eggs because they were on sale. I hate shopping for anything. But it was better that we split up because my mother also wanted American cheese, which meant spending some time at the deli. Boring.

Pain has come back so I took my meds as it’s been hours since my last dose. I am glad that I filled my med box before leaving. I really don’t want to stand up unless I have to. I still have no idea what I am going to have for supper. Only thing that I have eaten today was two cookies and a little piece of tiramisu. I didn’t like the tiramisu very much as it was mostly just cream. I feel like ordering Chinese again. I might because I am hungry and my mother had the last of it today so I don’t have leftovers.

burrito fix satisfied

Burrito fix satisfied

It was cool in the house, so I thought it would be the same outside. I wore my new Sox hoodie and I was sweating by the time I reached the bus stop. My cousin saw me and gave me a ride. While we were talking, I told him I was trans. He accepted it better than I thought he would, though I don’t think he really got it. He just thought, I think, that I meant I was gay. I told him I was going to transition to being a male. He seemed ok with the idea, much to my relief. I told him that my mother just pushed me over the edge and I had enough of not being who I really am.

I got my burrito at Chipotle and took it to Starbucks where I had a iced tea Lemonade. I didn’t want more caffeine because I just had coffee. The burrito was good. And then I wrote in my journal for a bit. I wanted to go to the butcher shop to get some ground beef. My mother wanted me to check the price of the chicken wings and fish. The fish was too expensive and the chicken was too fatty. I’ll get them at Stop and Shop.

I’m feeling really good that I came out to my cousin and him accepting me. I wish my mother could. My foot acted up on the bus ride home and got worse when I got up to my room. I’m going to rest and then try to take a shower. I think that will help my mood a little bit. I really want to change my sheets so they don’t keep coming undone but I am too tired and I really don’t want my back to hurt. I’ll do it sometime next week.

Another hit to the chronic pain community. I just read an article that stated addiction treatment centers do not routinely test for drugs because of various reasons, mostly due to the “cost”, yet it’s perfectly acceptable to test a chronic pain patient at random or routinely. This really pissed me off because I am one of many chronic pain patients that get tested, even though I do take my meds the way I am supposed to. I don’t use more, I don’t sell or give away my meds, I adhere to the policy in the contract that I signed because I need these meds to function and want to have some kind of life outside the four walls of my room. I am so sick of pain patients going through this rigmarole because addicts have taken over the truthfulness of true chronic patients. It just saddens me.

I’m going to have some ice cream. I have been thinking about it since leaving the Square. Until later…

when you want a burrito but GrubHub is too expensive…

When you want a burrito but GrubHub is too expensive

I had a peanut butter and jelly sandwich when I got up around noon. I made coffee afterwards and had a butterbeer cookie that I made. It was good but now my tastes are turning towards Mexican and I want a burrito. Unfortunately, GrubHub was too expensive and I wasn’t sure what kind of meat “Muchaka” is. I wasn’t going to pay $30 for two items when I can get more than that at Chipotle. So in an hour, I will go to the Square to get my burrito fix.

It’s kind of good that I will be going to the Square because I can get some ground beef to make my dirty gravy on Monday. I would make it tomorrow but I am going to my Aunt’s house and I just don’t have time. My mother just made a gravy but she froze most of it. I really would love to have penne pasta with my sauce.

I’ll probably got to Starbucks to write after I eat. I still haven’t showered and I really don’t want to. I just feel really blah and my foot/ankle is a mess. It’s really bothering me so I know that standing is going to be painful. It most likely will exhaust me so I will try and take it tonight so it might help me sleep. I had a shitty sleep last night, waking up in the middle of the night and not being able to go back to sleep.

This month is Pride month and I so want to tell my mother I am trans. Monday I plan on talking to my therapist about going forward with transition. I am just afraid my mother will flip out and kick me out of the house. I know that is my fear and there is a 45% chance she would. I am just afraid it will further strain our relationship. I am just tired of being called “her” and “miss” or “missy”. It just hurts and drives my suicidal drivers.

More later…

when you wake up at 0100

When you wake up at 0100

I woke up around 0100 because of pain and allergies. My nose was stuffed up and my eyes were tearing. I took some Flonase and pain meds for my foot. I just put in eye drops so my eyes don’t feel so sticky. I can’t go back to sleep. I am awake. I was dreaming about something to do with arachnoiditis. It’s a painful condition in which the nerves are clumped in the spine. It can happen anywhere and it usually caused by steroid injections in the back. One of the many reason I will never have an injection in my back is because of the risk of this condition, that and the fact it’s not going to help. The evidence is mounting that epidural steroid injection are becoming useless despite the pain doctors continuing to practice this. They rather do that than write a prescription because it cost more to have an injection than write out a piece of paper.

I don’t know why I was dreaming about this condition. I guess it was the last thing I looked at before I went to sleep. Sometimes that will happen. It’s so weird.

I took a strong pain pill to help with my foot pain. I also took an Ativan to try and calm me down some because I am just freaking out over being in pain. It’s so bad that I just want to die. I guess I am going to be sleeping today as I am going to be up half the night. I wasn’t planning on doing anything today anyways. I need to rest my ankles. I did a lot this week and I am paying for it.

My psych told me that my PCP did send off the referral to the CRPS specialist, but because of the new “wonderful” system, she is not sure when they will get back to me. I don’t have my hopes up and I am not looking forward to seeing her anyways. I am just done with docs and I know she isn’t going to do much for me other than either say that I have CRPS or I don’t. I will be devastated if she says I don’t because if I don’t, what the fuck do I have? I know the swelling isn’t severe like most cases of CRPS. People in the Facebook group that I belong to show their ankles and the swelling is unreal. In some people, they don’t even have an ankle it’s just a leg and a foot! I might just have a mild case of it. I know there are different grades of the syndrome. But something has to be causing me this pain. And I refuse to believe that pain meds are increasing my pain because if that was the case, why the fuck did I wake up from a sound sleep in bone crushing pain hours after I took my meds? Just doesn’t make sense to me.

Today is my uncle’s birthday. He died 11 years ago. He was my favorite uncle. He was funny and kind. I miss him a lot. I hope he has good cake up where he is. His favorite saying was “for Christ’s sake”.

After I had my Chinese food for dinner, I had raspberries. NEVER again. The burps were horrible and upset my stomach. I thought I was going to throw up. Thankfully, some antacid made it go away. I’m never going to buy raspberries again. They just aren’t very good and the seeds get stuck in my teeth. I like the jam better, seedless jam. I bought it on my last grocery order so I can make it with peanut butter. It’s really good. I might have it for breakfast later today.

I really need to shower today. Even though I don’t have much hair, I need to wash it as it’s itchy. I last took a shower Tuesday night so it’s been a while. Sox lost again. I hope the next two games with Baltimore are the last for the season. It’s been rough playing with them. Seems we have been playing them all season long. One of my favorite new pitchers was placed on the disabled list (DL) yesterday because he hurt his knee. He is out the next 10 days. I don’t know who is going to take his place in the rotation. The Sox are really hurting for starting pitchers. They still have a winning record, for now but if they continue to lose games, they won’t.