Saturday of pain 10 Mar 18

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–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
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

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’m a duck

I had a difficult sleep, not falling asleep till 5ish. I woke up 15 minutes before my alarm and just laid there until it went off. I felt like shit but got up. As I was walking to the bathroom, I got the dry heaves. There goes brushing my teeth. I used the bathroom and as I was washing my hands, the heaves got worse. Phlegm at the back at my throat wouldn’t go up or down and it was gagging me. I got sick and then felt a little better. I had some queasiness in my stomach so took a Zofran. I got dressed and then headed to the bus stop.

I figured having a breakfast sandwich might settle my stomach, but I wasn’t so sure about the espresso so I just had 4 shots. The Zofran worked and the queasiness went away. I still wanted my bed but I had to see my therapist. I wrote for a while, not writing much. Time seemed to pass very slowly. I left Starbucks a little after 1 to catch the train to my therapist’s office. As I was crossing the street, I bumped into a former lab coworker. We talked for a bit. It was so good seeing him. I told him I had to run but it was good seeing him. I went to the train station and got off at my stop.

My therapist and I got caught up. He told me I was a duck. I asked what he meant and he said that above the surface, I looked like I was calm and collected but underneath, my feet were panicking trying to stay above water. He said that I was anxious. I said that I didn’t feel anxious and he said that is what I am noticing about you. I let that slide. It was a good session overall. Even though I had my doubts that he would work, it seems like he will. I am glad I stuck with him, even though there were plenty of times I wanted to end. Hell, in the first few months, I wanted to leave 5 minutes before our session started. Just run out on him. It has been 10 months in working with him. He is laid back, though I like that about him. It makes me more relaxed to be around him. I like that we are having more back to back conversations and I am not the only one talking the whole time, I mean, I do but it is followed by feedback, which was lacking the first few months.

After the session, I went to the butcher shop to get some ground beef. I want to make a chili cornbread casserole tomorrow for dinner. My check came in today so I ordered my groceries with the ingredients that I will need. I hope I have a decent sleep so I can make it. I don’t know if I am getting sick or not or if it is just being up all night that I feel so rotten. My brother in law has the stomach bug so I have been trying to avoid him so I don’t get sick.

I am really fatigued from being up all night. I hate when I am up past 3 am. Just feels like you did a double or something and trying to catch sleep that you never can catch. I do have to be a little more vigilant in taking my pain meds regularly. I was doing so good and then I kind of slacked and I think missing a dose here and there has caused me to feel unwell. It might have contributed to me feeling sick this morning.

did too much in a short time

Did too much in a short time

My med alarm went off at around 0830. I took my meds and then wondered if I should get up. Other than waking up briefly at 0430, I mostly slept through the night, the first in a long time. I only got up because my back was hurting. My sister had come up and I said hi. I decided to make pancakes. While I was making it, my sister asked if my other sister could borrow my laptop. I said sure. After I finished eating and put my dishes in the sink, my sister came. I went upstairs to get my laptop. I went on it briefly to close my browsers. I still haven’t fixed the touchpad so I took my mouse down.

My mother had been washing clothes. After she put in a load, she said I had to do, she said I had to do the dishes. I wasn’t feeling up to it, just because she said I had to. While my sister was on the laptop, I made some coffee. I drank half of it and decided to shower. The game would be on in about 15 minutes. I had timed it right. I turned on the TV to watch the game. After the 2nd or 3rd inning, I did the dishes. There weren’t that many. I washed my coffee pot, taking the filter and stuff apart to get the coffee grinds out. My ankle was getting sore. Whatever my sister was doing on my laptop, was frustrating her so she went downstairs for my other sister to help her.

I went to the living room and told my mother I wanted grilled cheese for supper. She said she wanted raviolis. I said okay. I took out a container of gravy in the freezer and watched another inning of baseball. My sister texted me saying my younger sister made some flatbread pizza. I went downstairs to have some. It was good. I might make some tomorrow. My sister was done with my laptop so I retreated up to my room.

By the time I got there, my ankle was killing me. It was time for my meds anyway. I have been bad at putting in my med reminder. I turned on the game to hear the back to back homeruns by Swihart and Barfield. We are currently leading 6-1. I think I overdid things because I hurt so bad. I am glad I don’t have to make dinner but I do have to go back down the stairs to eat it. I am hoping the meds will kick in by then and I am in less pain.

My cousin was at the Children’s Museum today with her daughter. She showed a pic of her in a window with the Hood Milk Bottle in the background. It brought back many memories. I will never forget the time I was a teen counselor for a children’s summer camp. We went there for the day. I had an idiot adult counselor that hated children. Why he chose to work with them, I’ll never know. So we were at the museum, and the fire alarm goes off. Total chaos as we had to evacuate the building. The rules were that the teens were not to be left alone with our group of ten kids. I had no idea where this jerk was. I kept everyone together and we went outside. I met up with our module and there he was, coming from the Hood Bottle, eating an ice cream. I was so damn mad. He got written up for abandoning his job, which he should have lost, but that is my opinion. It was wicked scary. Luckily, there was no fire. Someone must have pulled the alarm by accident. The kids were safe and that was all that mattered.