The hunt for Picante sauce
I was in severe pain last night after taking my night time dose of pain meds. It wasn’t even two mins in my system when I moved to lay down that my ankle exploded in severe pain. It was then the waiting game of what to do/take. I was up till around 4. Around 3 I got hungry and heated up the breakfast burrito I made a few days ago. I wanted something spice and found a packet of picante sauce from McDonalds. YES! It was so good. My belly was full and I was able to get to sleep, though it wasn’t restful as I kept waking up every couple of hours, with my med alarm scaring the crap out of me. I would have stayed in bed but I had to see my therapist. I woke up shortly after 11 so there was no chance of a shower. I went downstairs to brush my teeth and use the bathroom. My mother made pancakes and saved me some. I took them with me to have at Starbucks with my much needed espresso.
I got to Starbucks and had 5 shots of espresso and the pancakes. It was good. I then wrote in my journal until it was time to leave for my therapist’s office. It was bloody cold but I was wearing a heavy sweatshirt and that made me sweat. My ankle was still bothering me so I took a strong pain pill to keep it quiet. In my Painsomnia state, I had written an email to my psychiatrist that was basically telling her I was going through with Plan A. She had responded with some weird inquiries so I had some explaining to do. We exchanged emails and I think everything is sorted. Not quite sure though as she never responded with my last email.
I went to my therapist’s office and session went well. He was surprised that the pain doc and my PCP had decided to go collaborate and not include me in the conversation. It is still a mystery why my psychiatrist needs to be involved. I asked him if the LGBT doc had been in touch with him and he said that they were looking for my entire record from him. He didn’t send it because he wanted to talk to me first and I am glad he did because I do not want them to have the record. They may talk to him, but I do not want what we talk about to be shared. He said that he is willing to write a letter if they need it but it will cost me. I am not worried about that. He said he would prefer a phone call. I agreed. So Friday when I meet with the doc, I will ask him what he wants with my therapist. As of yet, the LGBT doc has not contacted my psychiatrist. I have no idea if he got my medical records or what. Now I am really nervous about the appt.
I am on the fence on moving forward with my transition because of my plan. I am going to send my PCP a message about what he plans on doing with my pain meds. I am planning on picking up the script on Wed, if they are ready. After therapy, I went on my picante sauce hunt. I went to the grocery store at the Square and they had shit selection but no picante sauce. The eggs were also up thirty cents since I bought them Saturday. I went to another grocery store and they had the picante sauce! Yay! I bought three dozen eggs and a half gallon of juice, my kind as the one my sister bought my mother sucks. It is from concentrate and I like it not from concentrate. It just tastes better. I got home and had to shower. I was sweating and because I was holding my urine, I leaked pretty good. I felt gross. I knew my ankle wasn’t going to like it but that is what pain meds were for.
After the shower, I had dinner that my mother made. Then she yelled at me because I spent so much on the eggs. I should have destroyed the receipt but I forgot I left it in the bag. It wasn’t even her money! She said she wasn’t sending me shopping anymore. Fine. Whatever. I don’t give a shit. You buy your eggs and I’ll buy mine!
I just made a cup of orange spice tea and I am going to relax the rest of the night. My back and ankle are killing me. I hope I am not up all night again. I need to clean out my backpack and find out what the hell is so damn heavy. I think I am going to switch to my messenger bag. It is time for a change anyway. Time to rock the Pearl Jam bag!
Saturday of pain 10 Mar 18
Since I woke up this morning, my malleolus has been a 10/10 pain. I thought I was going to have a good day as for the first time in weeks, I slept through the night. I wanted to make a dirty gravy but that wasn’t happening as I could barely stand. I am going to try and just ground the beef and save it for tomorrow. I had asked my brother in law to get me some hamburger rolls but he didn’t go to the grocery store today as he was working. He said he would get them tomorrow. I wanted to make Manwich. Oh well.
I tried napping and not moving as much but that is impossible. Pain went down to about an 8, then moved to the front of my ankle. When it was time for my regular pain meds, I just took them and within minutes, that part of my ankle spiked. I cried. There was nothing else I could do. I can’t move. I tried listening to music but it just annoyed me. I wanted to watch the baseball game but it was delayed due to rain. I was going to turn it on when I got back to my room but I wanted to try and nap. I had taken an Ativan to try and calm down as I feel so much anxiety, like OMG what the hell can I do to get rid of this pain???!!! It is so overwhelming. I have had pain like this before but never this severe and for so long. It’s going on almost eight hours.
I had posted to my support group what my cooking plans were and that I wasn’t able to do it. They had no idea what a “dirty gravy” was so I had to explain. Then a few wanted the recipe so rather than make a long post, I just made a blog. It was all from memory though I think I said too much of the herbs. I usually just eyeball the stuff. I never measure as I have made it so many times. I think the more herbs are better anyway. I did give the option of using onion. Some people like it. I don’t, though now that I know I can buy diced onion, I might use it more.
I hope this pain is the after effects of the storm. Now my foot is acting up. I thought about using lidocaine or the diclofenac gel but I really don’t want to touch it. It is so fricken painful. I wish I could have my “normal” pain back but it’s been so long since I had it, I forgot what it felt like. I know my pain used to be a 3 and light throbbing. Now it’s a 6 with heavy throbbing. I can’t remember when it was below a 6. I can usually handle the pain at this level, but the bone pain has been something I have not been able to bear. Nothing seems to help it. I took some 800 mg of ibuprofen to see if that helps at all. It’s supposed to be good for bone pain, but I don’t know at the intensity that I am feeling it.
My mother is going to make hamburgers for dinner. I told her there was no way I could cook. I hurt too much to stand. Just standing for 6 mins for my frozen dinner was agony. She makes better burgers than I do anyway. Maybe I will make some tater tots. I can just throw them in the oven for twenty minutes. I don’t like when my mother makes them as she doesn’t cook them at the temperature on the directions nor for as long as they say. It’s like eating raw potatoes. My mother doesn’t like it when I make them crispy but I love crispy potatoes. It’s what makes them so good. I will sometimes have tater tots for dinner, just tots nothing else. Or hash browns. I love potatoes. I have been craving red potato salad, either with mayo or oil and vinegar, I don’t care. I just got to buy the potatoes. I’ll put that on my list of things to buy. Sucks when you can only get things once a month when that is when you get paid. With all this pain, I doubt I would be able to hold a job again, even if it was part time. I have no idea what I would do other than office work, as long as there wasn’t too much bending and lifting. I can’t really bend down to pick up stuff and I can’t lift anything greater than 10-15 lbs. because of my back issues. Sucks.
Rare disease awareness week
This week is rare disease awareness week and I thought I would write about one of my rare conditions called cauda equina syndrome. The syndrome is comprised of different symptoms when taken together requires urgent attention. At the end of the spinal cord, there are a bundle of nerves that resemble a horse’s tail, thus the name cauda equina. When these nerves are injured or compressed due to disc material or other trauma, they can cause serious damage. For those having back pain, it is important to know what the red flags are so that emergency surgery can happen to prevent further nerve damage that could become permanent.
• Loss of sensation of one or both legs
• Loss of sensation to the genital area or saddle area (basically between your thighs)
• Incontinence of bladder and/or bowels
• Retention of urine
• Weakness or numbness in one or both legs
• Severe back pain
Not everyone will experience all of these or might have some. It is important to get an MRI when you have a few or all of these. Don’t think that just because you don’t have all, you don’t have cauda equina syndrome. I only had severe back pain and weakness and numbness in my leg when I was diagnosed. Some docs think that you need to have bowel or bladder involvement to have this condition. THIS IS NOT TRUE!! The quicker you have the MRI and surgery, the better your chances for recovery. You have about a 48 hour window to avoid permanent nerve damage. It is important that you have a competent surgeon, someone who does spines. I prefer a neurosurgeon over an orthopedic surgeon because the neurosurgeon will have a greater knowledge of the nerves. That isn’t to say an ortho can’t be just as good. If the ortho only does spinal surgery, you might be okay. Just be sure they are board certified. You can check that out by checking on this website http://www.abms.org/verify-certification/
This is only in the U.S.
If you have been diagnosed with cauda equina syndrome, you may have a lot of questions about recovery. It is a multidisciplinary approach, from physical therapists, occupational therapists, urologists, neurologists, etc. It is important to know you are not alone and there are support groups out there. I have had this condition twice, which is rare. I had it at two different levels. Everyone that I have met with this syndrome does not have the exact symptoms or damage following surgery, even if the level was the same. It take a long time to heal from nerve compression. Don’t give up hope. Regeneration is a time consuming process, but with the right amount of physical therapy and home exercises, you can recover in time. It took me two years before I was able to get off my medications until I was hit with it again three years later. It took longer for me to recover but I knew what to expect because I had the support group behind me. No one is a cauda equina syndrome expert, not even the best doctors. Little research is done in this area. There are stem cell research going on for those that have paralysis and that gives us the hope that some day our nerves can be helped.
Check out my pages about cauda equina syndrome if you like to help you learn more about it.
Early morning wakening and other things
I woke up around 530 in pain, after falling asleep sometime after 1. I was not happy. I took some pain meds and contemplated staying up or going back to sleep. I opted to go back to sleep, but I set my alarm first as I had my grocery delivery today. Alarm went off but I didn’t want to get up. I finally did and managed to brush my teeth. Then I made some coffee while waiting. I am glad I got up because the delivery guy came like 20 minutes later. I showed him where to put the groceries and then after he put them there, I put the refrigerated stuff in the kitchen. I also got the frozen stuff as well. The stuff that didn’t need to be in the fridge, I just left until I was able to put them away. I told my mother I bought her tuna and she had a fit that I paid 50 cents more than another grocery store. You’re welcome!
I drank my coffee and was getting hungry but didn’t feel like cooking. I remembered I bought some breakfast burritos so I got one out. The preferred method was the oven, but screw that. I microwaved it. It was okay. It had beans in it with eggs and Canadian bacon. I think cheese was in there too, but I couldn’t taste it. I wanted to have some pie that I bought but thought it was too early for that. All my ingredients for the casserole came. I plan on making it around 3 today. My mother said she doesn’t want it. I figured. She doesn’t like chili. I hope I am not going to eat the entire 9×13 pan by myself. That will just suck. I plan on giving some to my brother in law but not sure if his system is up from things spicy as he is getting over a stomach bug. I’m not sure my youngest sister will eat it. I know my youngest niece won’t even look at it.
I came back to my room and my damn foot went berserk. It was time to take another dose of pain meds so I took it. I don’t plan on getting up until it’s time to make the casserole. I am tired from running all over the house, putting things away. I didn’t realize I bought so much soda. It will last though because I don’t drink it every day. I still have my orange mango from Nantucket Nectars. I bought them last month and I think I just drank one. I bought 7Up, my favorite soda ever. I haven’t had it in so long. Only certain stores sell it so it’s hard to find a 20 oz bottle. I bought a 12 pk of 12 oz cans.
The casserole came out okay. I don’t think I will make it again. I don’t know why I bought cheddar cheese and sour cream. I didn’t use it when I had a piece. I was kind of full with just half a scoop. It was fun making it though my ankle and foot didn’t like it. My back is bothering me too. I lugged a quarter case of water up to my room and think I took my hip out in the process. I am so tired now. I want to nap but am afraid that if I do, I will be up all night. I could be up all night anyway if I stay up.
I listened to like 4 innings of the game before cooking. They were losing 3-1 when I left. I thought they would comeback and they didn’t. They had their first loss today at 6-1. There is a second game but it is only on TV. I am upset over this as I want to listen to it. I like listening to it better than watching. I had some baseball fix. The starting pitchers only pitch 1 or 2 innings before changing. I never noticed that before, but then I never really paid much attention to Spring Training. I usually just pay attention when the season officially starts but I need baseball in my life right now. It’s like a drug to me and I was jonesing pretty bad the off season.
I didn’t have s good day. I had a hard time sleeping because of pain. Woke up every few hours to take more meds for relief. When I woke up during the morning hours, my back was hurting. It had started last night before I laid down. I had sneezed earlier in the day. I think I pulled a muscle. I wanted to use a tennis ball some time today to massage it out but never did. I feel so useless. I had bouts of anger today at my condition.
I don’t want to continue with physical therapy. I keep going back and forth. I just want to call tomorrow and cancel my remaining appts. Only thing is, I just ordered a mirror from Amazon last night. Couldn’t sleep so I was browsing. Found one that I think might work. I don’t know if it will help me. A couple of people in my CRPS group are doing it but they aren’t sure about it either. I think I just want to be better now and it is not going to happen. It is going to take time like dealing with the depression. You don’t want to wait for the meds to work in 6 to 8 weeks, you want relief now. It is very hard.
I had a somewhat good time when I went over my cousin’s last night. I ate more than I should have. Oh well. He really doesn’t understand chronic physical illness. He said that he knew someone that was like me, that canceled on short noticed. He said he “understands” but he didn’t. I brought it up to him that it is hard to be social when you are in pain. I had a better time talking to his walls. Jerk. The whole time he talked about his anxiety and money issues. His phone kept ringing and he would answer to say he has company. He smoked 4 cigarettes while I was there. I had to shower when I came home.
I wanted to bake today but it never happened. I have to use the zucchini soon or it will go bad. Maybe Tuesday I’ll make it. Depends on how I feel. I have back to back appts tomorrow so will be out most of the afternoon. I don’t know what kind of stress that will cause. Just hope I can sleep at a reasonable hour tomorrow. I’m going to read a chapter of my baseball history book. I wanted to read at least two so will settle for one. I haven’t touched the book in a week. Seems I only read on weekends. Least I am reading something other than social media.