Tag: chronic illness

tough news

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, depression, mood disorders

Tough news

I woke up with my med alarm going off. I had set it so that I could be better at taking my morning blood pressure pills. My ankle kind of hurt so I thought it was going to be okay to stand up and go to the bathroom. NOT. Standing up brought a lot of pain and I knew the day was going to be shot. I gingerly went downstairs with the cane as I didn’t have time to put on the boot. My bladder said now and it meant it. As I was moving about, the pain kind of got better but didn’t go away. I wasn’t going to chance flaring it up while making cookies so that will be tomorrow’s quest.

I went back up to my room and then my bowels needed to be emptied. Seriously? Seriously. I went back downstairs and did my business. I had emailed my psych because my chin was twitching and I didn’t know if it was a side effect of the Invega. She said it could be like the eyelid twitching as she didn’t think it was due to the Invega. I was relieved. It is still weird to have the twitching though. Might be pain related as I really clenched my muscles when I had the cramp at PT to stop crying.

My mother had a visiting nurse come. She has had PT and RNs come to the house the last few weeks because she is having a hard time getting around. I waited for the nurse to leave before I went back downstairs to make some breakfast. I told my mother I really would like mac and cheese the way she makes it for dinner. It is basically elbows and American cheese melted on top. It is quick and easy and I love it.

Around 1230 or so, I get a response from my PCP. It wasn’t good news. He is a fink. He said that he was skeptical about playing around with my pain meds. But a longer acting pain sound okay for me. But he wanted me to be seen by a pain doc. I was fuming so hard I started crying. I responded that why couldn’t he tell me this 2 months ago and now I will have to wait at last another month or two for the appt. That is like 4 months I have/will suffer. Thanks doc. Do you sign death certificates the way you handle chronic pain patients?? (or something like that). I cried for an hour. I still am crying though not as bad. I told my mother to cancel my birthday party. I didn’t want to see anyone, not even my family.

Then some other PT or nurse came and I had to go downstairs with my face a mess. Great. I had to open the door for her because my mother couldn’t make the stairs. I let her in and then got some salami from my sister’s house to make a sandwich for lunch. I came back to my room, figuring I would make the sandwich after the PT or whoever she was left except I finally managed to nap. I slept okay. My bladder woke me up and my sister was calling me. She wanted to know why I canceled my party. I told her I didn’t want to see anyone or do anything. She asked if she wanted to go for lunch or something and I said no.

My mother had left me a message as I was drifting off to sleep. I asked her what she wanted and she wanted to know why I was crying. I told her I didn’t want to talk about it as I just stopped crying and didn’t want to start again. I am crying as I am typing this because I am still upset my PCP is a fink. I just can’t believe he couldn’t tell me this two months ago. I could have made an appt and had meds I needed by now. The fink also said that trying the Vimpat for at least two weeks might help me. WTF seriously??!! There is no data to support that. I will only be on 50 mg for a week before increasing it to 100 mg, taking 50 mg twice a day. I wanted to put the med alarm in place so that I could take my meds twice a day as I usually sleep too late, especially when I have difficult nights falling asleep due to pain. I have no idea how I am going to react to this med and I hope that it is favorable.

The fink wants ME to call the pain clinic for an appt. I will have to look up the number as I’ve never been a patient there, I don’t think. If I was, it was before I developed CRPS. I fucking hate that I have to see another doctor and explain the whole story. And hope that he or she won’t turn me away when I tell them I don’t want injections of any kind. Only think I will be open to would be ketamine infusions. I really hope that when I have to refill my pain meds for next month, the fink allows it. Otherwise there is going to be problems.

bad day at PT

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, depression, mood disorders

Bad day at PT

I wasn’t in too much pain when I woke up around 1015 this morning. I had to leave early because I needed to mail a book out to one of my CES friends. She wants to give it to her husband for Christmas. Hope it arrives in time. It was cold but not frigid as I waited for the bus. I got to the place around 1215, which still left me a half hour before my appt. I went to a Dunkin and had a sandwich and coffee. And I had to have some donuts, too.

I saw the therapist as I checked in. I waved hi and she asked if she could have a few minutes to eat lunch. I said sure. That gave me time to finish my coffee. My pain was around a 3 or 4, the lowest it has been in quite some time. She decided to give me a try on a stair step thing. I did that for about three minutes. My ankle felt tight but it didn’t hurt. Then we did some other core exercises. My pain level didn’t change too much. Next she wanted to look at where my pain was so I took my sneakers and socks off. I pointed to where it hurt. My ankle was hanging off the table as she poked and prodded lightly. I was getting a bad feeling about this as my ankle didn’t feel right. She had me move my ankle this way and that, moved my toes manually as I couldn’t really do so, for 16 years. She said they were tight. Duh, I didn’t get movement back after 16 years. She said my joint (ankle) was tight. Next thing I know I got a cramp in the area that has been hurting me and I saw stars. It hurt so bad, I started crying. I couldn’t help it. She tried to ease it but nothing she did helped. I was in a flare. It took the rest of the time we had to settle down some so I could put my socks and sneakers back on. I felt bad I cried. I never cry in front of people, but I must have felt “close” to her because the tears were there. I was dreading going home but there was nothing I could do but grin and bear it.

She gave me some stretches and exercises written on a piece of paper and told me when I get home to put a warm compress on my ankle. She also wants me to email her tomorrow to let her know how I am doing. We also set some appts up in the new year. I was thankful to leave. Unfortunately, I had to stand for at least 15 minutes for the bus to take me to the station. I then I had to wait another 20 for the bus home. I kept standing and walking around, sitting while waiting for the bus. I got annoyed the bus hit traffic near a school zone. I wish I had a car so I could drive home. I hate taking the bus but there really is no other way I could travel to my destinations.

By the time I got to my stop, the pain had let up a little bit but walking was still difficult. I took off my AFO when I got home. I got a facecloth and ran hot water on it. I figured it would be warm by the time I put in on my ankle. I went up to my room carefully and got undressed quickly so the cloth didn’t become cold. It was still warm and I left it on my ankle until it got cold. It felt a little better. I took my pain meds. I figure if the pain didn’t go away in an hour or two, I would take the strong pain pill. I then got on my laptop with the intention of writing a blog but it didn’t happen. I was goofing off on the net. I still was thinking of writing but a wave of tiredness came over me and I didn’t know if I should nap or not. By the time I was done goofing off, I was hungry. I tried to order a sandwich but you needed a minimum of $10 and the sandwich was $8. Oh well. I wanted cold cuts but didn’t feel like going back out. I asked my sister if she was coming home after work. She said later and what’s up. I told her I wanted her to buy cold cuts for me and she said she had some in her house. Score! Now I just needed the pain to stop enough for me to go down two flights of stairs. I eventually made my way down. The sandwich was good. She had turkey and salami and rolls.

I am so tired right now. It’s too early to take my meds. I wanted to watch Home Alone but I forgot where I put it. I think it’s in a CD case. I am hurting too much to stand that long taking it off my bookcase as there are other things on top of it. I will try and look for it tomorrow when hopefully the pain is down. My ankle is really throbbing. I am tempted to put some lidocaine on it. But it’s kind of cold in my room and I really don’t want my foot to get frozen like it did the other day.

Pain too much today

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, depression, mood disorders

Pain too much today

I woke up around 8. According to my phone (I have no idea how it knows when I sleep), I slept 9.5 hours. I went to the bathroom and then came back to my room. I was going to make cookies today. Around 0840, my mother calls me to go to her room. I do and she is kind of slurring her words, which can only mean trouble. She said she felt weak and to get her blood sugar testing supplies. I also got her some juice. Her sugar was 70, which is kind of low but not really low. She drank the juice. I think she might have been lower but her body recovered because her sheets and bed clothes were wet. She wanted me to take them off so she could wash them. I did so and brought them downstairs. I asked her if she needed any help going down and she didn’t. I went down carrying her water glass and testing supplies.

When she came down, I asked what she wanted for breakfast. She said an egg McMuffin. I made if for her and then took out my oatmeal I made. I wanted an egg McMuffin but I had the oatmeal. I might make if for dinner. Her sugar went up to over 150 after breakfast. I stayed until I knew she was okay. All the going up and down stairs killed my ankle. I rested for a bit and then checked to see if my prescription was ready for pick up. It was still listed as out of stock so I called. The tech I was friends with said the stock just came in and by the time I got there, it would be ready. Cool. Except, I really didn’t feel like going out. I waited a little bit and then got dressed. I wore some sweatpants as I didn’t feel like wearing jeans. I then went downstairs and checked on my mother. I asked her if she would be okay for like 20 minutes while I went to the pharmacy. She said she would be. I grabbed a coupon for White Castle burgers and left. It was warm so I didn’t wear a jacket. I grabbed the burgers from the freezer. They also had buffalo wings so I grabbed a box of that. I got my meds and sure enough the new med is a controlled substance because it needed my ID. I thought that was weird but whatever. By the time I came home, it was almost noon time, too late to take a dose. I put the oven on for the wings. I had bought a Coke Zero, which I thought was regular but turned out to be cherry. I like cherry coke better than Pepsi. It tasted okay.

By the time I got back to my room, my ankle had started to act up and my foot was beyond painful. I got back into my PJs as the sweatpants were too warm. I figured I would give some time for my pain to settle before making the cookies. Nope, it never settled. I then I had to go back downstairs because I had to pee. I put the cream cheese back in the fridge and covered the cinnamon sugar I made in prep for baking. I had some craving for pancakes but I didn’t want to tax my ankle more than it was already. I was still a little hungry after I ate the wings. I made the burgers instead. It was quicker and easier than pancakes. I asked what my mother was doing for dinner and she said leftovers. Guess I will be making the egg McMuffin after all. My ankle is still hurting. I am off it now as I am writing this, but CRPS doesn’t care. Pain will still happen. I took a strong pain pill as I just couldn’t stand the ankle flare anymore. According to my phone, I have already taken more than 2100 steps. I am taking it with a grain of salt as I found out that shaking the phone will add at least 30-40 steps. Going up and down stairs probably added 1000 steps I didn’t really take.

I got an email letter from my PCP. To my surprise, results from the sleep study are back. I have very mild sleep apnea, which can be treated by losing weight. It was noted in the report that I woke up a few times due to pain, which is what I have been telling him all along. He didn’t say anything about putting me on a longer acting pain med, so I sent him a message. It’s kind of late so I probably won’t get a response until tomorrow or Thursday. I know I need to lose weight but I got bigger fish to fry. I just wish the damn combo of Invega and gabapentin didn’t send my appetite through the roof. Being immobile on some days doesn’t help either as there are days I don’t leave the house, mostly due to pain.

hopelessness and other things

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, depression, mood disorders

Hopelessness and other things

I only got about 3 hours sleep and woke up around 5 am. Yucky hour. I tried to go back to bed but couldn’t. I even took some Ativan but once I am up, I am up. I didn’t want to sleep and then have the alarm go off. I knew I would feel terrible. I made breakfast and coffee. I had enough time to catch the 0845 bus so around 0830, I got dressed. I got to Starbucks and ordered an eggnog latte with 3 shots of espresso and a lemon cake. I brought my laptop hoping to work on my story but inspiration failed me. I gave up and then started writing in my journal. I wrote about a paragraph when I got hit with intense hopelessness out of the blue. I wasn’t writing anything specific, least I don’t remember. But it was awful. I felt like my world was going to end at any minute. I tried to shrug it off but it was latched to me like glue.

I got a text saying the red line was delayed so I packed up my things and walked to the station, hoping I would get hit by a semi. Everything just seemed so depressing and bleak. I know I had a discouraging morning as more and more evidence is being pumped into the opioid crisis, even though reports specifically say it is heroin and illicit fentanyl doing most of the ODs. But they are coming for drug makers now, telling them they can only produce so many kilos of the stuff in the upcoming year. That is fair to the legit chronic pain patients who don’t abuse and take their pain meds the way they are supposed to. The joint commission is also proposing ways to treat pain non pharmacologically. I dreaded reading this word because I knew what it meant and I was right. I guess all this stuff finally sunk in and now I was feeling hopeless about being a chronic pain patient and not being able to get pain meds due to shortages. If I was in the hospital again, I might have a harder time getting pain meds.

I made my way to my psychiatrist’s office and just had enough time to pee and then walk to her office. I got there within 5 minutes to spare. I asked her if I should still be in therapy and she shocked me. She said it was up to me. She also said it was a privilege to see a therapist. That I failed to see. I almost started crying because I thought of the pain of my former therapist and how she left me high and dry with no reason for termination. I also told my psych that my current therapist and I don’t have the interaction like we do. She asked and said rapport? I said yea. I could be talking the whole 45 minutes and then he says see you next week. I just am tired of therapy. I know it is useful. I know there are benefits in seeing someone but I just can’t anymore. I think I got to heal some after being dumped by someone who I knew for 16 years. Now I just got to let my therapist know this. I am not sure how I am going to do it. I owe him some money as I have gotten behind in paying him. Also doesn’t help that he doesn’t give me statements every month so I am just guessing what I owe him.

I am relieved my psych is just putting it on me to decide whether or not I should be in therapy. I was nervous about bringing it up. She asked what I was doing for Christmas and I told her. She busted out laughing when I told her I was ordering Chinese food on Christmas Eve while the rest of my family eats fish. In all my years knowing her, I never heard her laugh so hard. I felt better when I left her office.

I had to pick up some bread for my mother so did that on the way home. Then I stopped in the liquor store across the street but I couldn’t find what I was looking for. I might ask my sister for a bottle of red wine made by Mark West. It’s one of my favorite reds.