Saturday Blog 3 Mar 18

Saturday Blog 3 Mar 18

I’ve had a crazy, painful day. I was up till about 3 and then woke up whenever my med alarm went off, took my BP pill, and went back to sleep for about another 2 hours. I made breakfast and was feeling down and blah. I had sent my psychiatrist an email telling her how much despair I was feeling because pain was interfering with my sleep so much lately. I was so tired of being turned down by doctors to help treat my pain, including my own PCP. I haven’t received a response. I also sent my friend an email, though I don’t recall what it was about. I just called it “just venting”. I haven’t read her response yet. I had made coffee after I made my breakfast and as I was drinking it, I wrote this on Facebook:

I hope that my posting pics of making this or that doesn’t negatively affect me in some way. Don’t get me wrong, as much as I love to cook, it comes with a price. Last night making the ribs and tots cost me some serious pain. I didn’t get to sleep till 3 am. I am grumpy today and my mother wants me to go to Market Basket for some cheese cuz today is the last day of the sale. I’ll be going by bus, which is gonna cost me some spoons. I still need to shower as it has been almost a week. People with chronic illness have to take each activity slowly. Making breakfast might cost me that shower. Going to the grocery store might cause me to lose sleep again. It is a guessing game with this blasted chronic pain. It takes it toll. Last night I was swimming with despair and emailed my psychiatrist some choices need to be made. If not, well, I might not be anymore. I’ve had enough.
I’m going to drink my well made Starbucks coffee and ponder things. Just hope the little activity I’ve done so far can let me shower. 4 spoons left…

I took the shower and did okay. The laundry hamper was getting full so I decided to have my jeans washed. I went upstairs to change so I could catch the 1245 bus. I found a pair of Khaki jeans that I haven’t worn in quite some time. I kind of forgot about them as they were in my clean clothes pile, lying at the bottom. I thought they were shorts until I pulled them out. Then I remembered why I haven’t worn them in a while. The waist was tight. I am sure the cookies I had with my coffee did me no favors. I put things in the pockets and put some pain pills in my pocket pill container. I had run out on Wednesday when I went out last. I meant to put some more in but forgot, which sucked when I flared at my psychiatrist’s office.

I went to the bus stop and waited. And waited. And waited some more. The bus never came and I froze as it was still windy and cold. I caught another bus to where I had to catch the bus I needed for the grocery store. I thought I missed it, but it was late. Thank god. I didn’t want to wait another half hour in the cold. The grocery store was kind of typical. Crowded for a Saturday, which is usual. I wanted to get the produce my mother wanted but they had all the registers open and I couldn’t sneak by, which meant I had to go around. So I grabbed the cheese my sister wanted and then went to deli for the cheese my mother wanted. I stood longer than I should have because I had a new guy. I don’t know if he was being trained or what as the other two people working there were telling him what to do. I got what I needed then went to produce. I had a hard time knowing where things were. I finally found where the spinach and green beans were then went to the lines. I got in the express lane as I only had a few items. The total went to $65 and I was like what? The cashier was like what was $33 dollars, and I told him nothing should be that much. He showed me the description and the new deli person was charging me $33 for a quarter pound of salami! WTF!! I told him I didn’t want it because I didn’t want to go back to the deli. I just wanted out of the store. My back and ankle were murderous.

As this was the first time going to this grocery store by T, I didn’t know where the bus stop was. I quickly scanned when I crossed the street and found it. When I got there, I checked the bus schedule and one was leaving the station soon. I was going to go back to my original destination when my sister called me when I was near the Square. She said she would pick me up because she needed the cheese now. Okay! Came home and told her the story of the salami. She couldn’t believe it. I told my mother and she laughed. She asked if I did get her the salami and I said no, I didn’t want to go back to the deli. My sister was almost done cooking the lasagna. I was glad because I was cooked! I was so tired and in pain. I really didn’t want to go back down stairs but I was hungry as I didn’t have lunch.

I just came back to my room now. I was chatting with my sisters and my niece. It was a pleasant meal, even though I was in pain. I found out my sister loves Ed Sheeran. She was playing some of his music and she was like don’t you know his music. There is only 2 songs of his that I like, 3 if you count his current song, Pleasant Symphony, which I had her turn off because it was going to make me cry. His voice is just amazing.

Win update and other things

Win update and other things

My mother needed me to print off the email from Sears so she could have an itemized receipt of what she bought. I printed it out and when I got back on my bed, stupid thing popped up saying Windows 10 needed a security update and needed 8GB of space, minimum. Last time there was an update, I had to use my thumb drive to download and install it. This damn thing doesn’t give me the option and there is no way to minimize the fucker. I am not in the fucking mood to be dealing with this today. My pain is unreal because I made dinner for my mother, niece, and I tonight. Just one hour of cooking did me in. The cold rain and wind I am sure is not helping. Not that I felt great to begin with.

Last night, my leg was hurting so I massaged it. It felt really tight and swollen. Lovely! I meant to call my doc today but I woke up late because I didn’t sleep, again, through the night. Also didn’t help that I was a dumbbell and forgot to change the med reminder alarm to something other than 5 fucking AM. Scared the shit out of me! I will call on Monday, though I will doubt I will be able to see the twerp that is my PCP. I’ll probably see one of his associates.

I had my haircut done on Wednesday before I saw my psychiatrist. I woke up this morning and wanted to shave my head because it grew in and I wanted that close feel. I probably would have if my damn ankle wasn’t hurting so bad. It would have given me a reason to shower, though it has been more than a couple days since I have. I am getting bad at showering again. I can’t help it. It hurts to stand right now and I can’t shower sitting. Maybe if I had an enclosed shower stall or something. My previous house had one with a door. We have have a curtain and a some what high ceiling. Knowing me, I would get the water everywhere but on myself. Even when I am washing dishes, spoons especially, I get water every where. It’s like I take a bath along with the dishes. My mother tells me to move the head of the faucet inward but I forget or if I do, then water goes on the splash guard. I am terrible. Maybe tomorrow, if I wake up early (i.e., before 1 pm), I will take it first thing. I had wanted to make breakfast but it was past lunch when I got up. Oh well. Bacon is still going to be there tomorrow.

I wanted to write about CRPS for Rare Disease Awareness but I am having trouble with it. My brain is just not to focused. I’d have to research it a little more, even though I have it, I don’t have a typical presentation of it. I mostly just have pain that is unexplained, except when you look at my bone scans. That is what it took for me to finally get diagnosed as I have bone changes. Not everyone is that lucky. If I am up early tomorrow, I will try and write something for it. I think it is important to spread awareness about it.

Too tired from being in pain

I had a difficult sleep. I woke up every 4 hours or so. I really just slept all day. I was going to write about CRPS today as rare disease awareness but I don’t have the energy. Maybe tomorrow.

I texted my therapist about this flare. I am so full of despair. My heart is breaking. My cousin had a baby and she came up the house. I didn’t want to see her. I was hurting too much to go downstairs. I know the temp is going to drop and there is supposed to be rain tomorrow. Not like CRPS cares. I’ll hurt anyway.

I see the pain doc in two weeks. He better give me something for this or I’ll go insane. I need to sleep through the night not sleep all day.

I haven’t had any coffee today. I think I might make a cup of tea as it is getting late. I bought coffee cake. I had a couple pieces before dinner. It is smaller than I thought it was. I feel bad that I missed the game again today. I canceled my eye appt so I should be able to hear it if it is on the radio. I don’t plan on going out as it is supposed to be rainy and windy.

I hope I sleep tonight. My ankle is throbbing so bad right now and the bones ache. I feel so helpless. I wish there was something I could do to soothe but there isn’t. How can you combat bone pain? Just sucks.

Rare disease awareness week–Cauda Equina Syndrome

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.

They are:
• 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.