We don't celebrate Halloween here. The holiday is trying to knock our doors but us Swedes are still pretty traditional and having a hard time accepting new holidays. I did manage to get outside today, thanks to taking painkillers before going out. I'm in agony now and needing to take meds again but will try to tough it out.
Called my clinic in the afternoon to discuss a prescription renewal they had forgotten about and told the nurse that something needs to be done ASAP because I can't live like this any longer! I need to get back onto around the clock pain relief, preferably Fentanyl patches as I know they work for me with no side effects at all. I'm sick of experimenting with medicines that doesn't work!
Also told the nurse I need that wheelchair (that I requested about 6 months ago) very soon or preferably last week because I'm very limited on crutches and with the absolutely awful pain I get from the crutches it's likely I'll be house bound very soon because walking just hurts too much and causes too much pain. Even with taking my painkillers, the pain in my hands and wrists gets so intense I don't want to wake up the next day. I'm just 27, I don't want to think such things like "Do I have to wake up tomorrow?" because I'm in so much pain, pain that can be treated with the right medicines and somewhat prevented by having the right aid and supports.
If I could just have a little bit of my life back... Having less pain and be able to go places more... It would be priceless and I don't care how much people stare at me!
Wednesday, October 31, 2012
Tuesday, October 30, 2012
Close to tears...
My hands, especially thumbs, and wrists hurts so bad today I've had to resort to painkillers 3 times today just to have any use of my hands. Walking with crutches has been total agony anyways, resulting in me only going outside because I had to pick up a couple of prescriptions at the pharmacy out of which one couldn't wait until another day.
The level of pain today is making me think "do I have to wake up tomorrow?" so you can imagine, it's bad :(
I'm pretty sure I won't be able to go with my parents to the supermarket tomorrow, it just hurts too much to walk, even with painkillers in my system... The painkillers only take the edge off.
Lower back, hip, knees and ankles are as bad as always so walking unaided is not an option when walking more than within an apartment.
Tried writing some in my diary before. Even with the PenAgain pen, my writing ability is very limited. I get writers cramp in my hand(s)- I'm ambidextrous, very fast even with having the pen that is said to delay or prevent writers cramp. I'm doing a little bit better typing on laptop but that hurts as well and my fingers lock backwards as I'm typing. Can't wait until I have my ring splints!
Going to call my occupational therapist tomorrow and tell her (or the receptionist at the clinic) that I'm not having a good situation at all now with my hands and wrists. Can't go outside the door without being in complete agony!
I'm very close to being house bound, all because I don't have the right aid and not enough pain relief by far. I did discuss going back onto Fentanyl patches with my GP last week, but he couldn't promise anything. Last time I was on it, was when I lived in Denmark and had a GP who wasn't afraid of treating what she couldn't cure. I don't know how long or short days they have in Denmark but my medical records from Denmark were ordered by my Swedish clinic in late February and before I moved from Denmark the receptionist in Denmark said "They just need to order it and we will send it within a few days" when I asked to have it printed to deliver it in person in Sweden. Need I say my medical records still hasn't arrived to my Swedish clinic?
Something needs to be done, and soon! I can't live like this! I'm sick of spending my days in bed or on a sofa because going outside= walking, hurts too fucking much!
Typing hurts too much now... I'd better rest...
The level of pain today is making me think "do I have to wake up tomorrow?" so you can imagine, it's bad :(
I'm pretty sure I won't be able to go with my parents to the supermarket tomorrow, it just hurts too much to walk, even with painkillers in my system... The painkillers only take the edge off.
Lower back, hip, knees and ankles are as bad as always so walking unaided is not an option when walking more than within an apartment.
Tried writing some in my diary before. Even with the PenAgain pen, my writing ability is very limited. I get writers cramp in my hand(s)- I'm ambidextrous, very fast even with having the pen that is said to delay or prevent writers cramp. I'm doing a little bit better typing on laptop but that hurts as well and my fingers lock backwards as I'm typing. Can't wait until I have my ring splints!
Going to call my occupational therapist tomorrow and tell her (or the receptionist at the clinic) that I'm not having a good situation at all now with my hands and wrists. Can't go outside the door without being in complete agony!
I'm very close to being house bound, all because I don't have the right aid and not enough pain relief by far. I did discuss going back onto Fentanyl patches with my GP last week, but he couldn't promise anything. Last time I was on it, was when I lived in Denmark and had a GP who wasn't afraid of treating what she couldn't cure. I don't know how long or short days they have in Denmark but my medical records from Denmark were ordered by my Swedish clinic in late February and before I moved from Denmark the receptionist in Denmark said "They just need to order it and we will send it within a few days" when I asked to have it printed to deliver it in person in Sweden. Need I say my medical records still hasn't arrived to my Swedish clinic?
Something needs to be done, and soon! I can't live like this! I'm sick of spending my days in bed or on a sofa because going outside= walking, hurts too fucking much!
Typing hurts too much now... I'd better rest...
After sun comes rain...
We had a cold, crisp, sunny weekend which was really nice. Now the weather is back to normal and it's rainy and windy again! We're not even anywhere near Hurricane Sandy for that matter, "she" is like 3500 miles away across the Atlantic ocean!
My wrists has had enough now, they're toast, especially left. How I'm supposed to get outside at all tomorrow I don't know, it hurts too much to put any weight on my wrists and walking unaided is not an option :( My meds only took the edge off of the pain, I took a low dose though, could have taken the double but I really don't like doing that, it's bad enough having to resort to pills at all.
Not feeling at all well today, the cold, humid, windy weather goes into my joints, plus the wear and tear on them. Add IBS acting up, giving a fair bit of stomach pain and discomfort...
At least I bought a notebook today, to use as a kind of diary. I'm planning to write down what I do, if I take medicine, how I feel and how I feel about things, and maybe even eventually let my doctor read it to give him an insight in my life as it's difficult to get an idea about it in just a short consultation. With the PenAgain pen I should be able to write more by hand before it hurts too bad, especially once I have my ring splints.
Thumbs hurting too much for typing now... Need to rest...
My wrists has had enough now, they're toast, especially left. How I'm supposed to get outside at all tomorrow I don't know, it hurts too much to put any weight on my wrists and walking unaided is not an option :( My meds only took the edge off of the pain, I took a low dose though, could have taken the double but I really don't like doing that, it's bad enough having to resort to pills at all.
Not feeling at all well today, the cold, humid, windy weather goes into my joints, plus the wear and tear on them. Add IBS acting up, giving a fair bit of stomach pain and discomfort...
At least I bought a notebook today, to use as a kind of diary. I'm planning to write down what I do, if I take medicine, how I feel and how I feel about things, and maybe even eventually let my doctor read it to give him an insight in my life as it's difficult to get an idea about it in just a short consultation. With the PenAgain pen I should be able to write more by hand before it hurts too bad, especially once I have my ring splints.
Thumbs hurting too much for typing now... Need to rest...
Monday, October 29, 2012
It's like having a tooth ache!
Just in the joints instead of in a tooth... I sure am paying for yesterday now! Left hip is nasty and so is my lower back and knees, and my hands are aching pretty bad! The padding of my crutches failed miserably, it was enough to walk from my parents place to home with it on the crutches and wearing my thumb splints and my skin was getting rubbed and sore. With padding but without splints, I still found the crutches to be too big to hold so it hurt my hands even though it was nice with the softer surface, the grip was just too big! The very big grips of the crutches also hurt my right thumb, making it nearly as bad as my left thumb in just minutes... It's now been pretty much decided that I will order a pair of SmartCrutches as they take the pressure from wrists and have smaller, softer handle than regular forearm crutches. It won't help my legs much, but it will help my hands and arms, making it hurt less to walk. Looking at cost, some anatomically correct crutches can cost as much each and have less possibility of adjustments, than the SmartCrutches which are sold in pairs and can be adjusted in many ways.
Forgot to mention yesterday that mum, grandmother and I went to an American bakery shop in Gothenburg yesterday and mum and grandmother got their JellyBelly jelly beans and mum and I bought Red velvet cupcakes to bring home for the coffee, also bought a slice of Lemon meringue pie which my parents and I shared. All of us really liked the Red velvet cupcake, but the lemon meringue pie was kinda sickening sweet. But anyways, will definitely get the Red velvet cake or cupcake again :) We're going to that shop again sometime and it's also a cafe so we'll have some coffee and cake there then, at that time I will for sure try the Red velvet cake as it looks different than the cupcake version, it was just easier to bring as cupcakes than trying to carry a box with 3 slices of cake and try to make the cake pieces stand up all the way back to hometown with having lunch at a restaurant before taking the train back.
Can't type much more now... Aching too much all over, including hands... Trying to tough it out without taking anything for it.
To all my friends on the American East coast: Stay safe in the hurricane! I'm thinking of you!
Forgot to mention yesterday that mum, grandmother and I went to an American bakery shop in Gothenburg yesterday and mum and grandmother got their JellyBelly jelly beans and mum and I bought Red velvet cupcakes to bring home for the coffee, also bought a slice of Lemon meringue pie which my parents and I shared. All of us really liked the Red velvet cupcake, but the lemon meringue pie was kinda sickening sweet. But anyways, will definitely get the Red velvet cake or cupcake again :) We're going to that shop again sometime and it's also a cafe so we'll have some coffee and cake there then, at that time I will for sure try the Red velvet cake as it looks different than the cupcake version, it was just easier to bring as cupcakes than trying to carry a box with 3 slices of cake and try to make the cake pieces stand up all the way back to hometown with having lunch at a restaurant before taking the train back.
Can't type much more now... Aching too much all over, including hands... Trying to tough it out without taking anything for it.
To all my friends on the American East coast: Stay safe in the hurricane! I'm thinking of you!
Sunday, October 28, 2012
Gothenburg
Mum and I did take the train down to Gothenburg today. I was feeling surprisingly well when waking up this morning so I decided we'd go. We arrived in Gothenburg at 11am and took a tram to a nearby tram stop from the rehab shop is located and waited for my grandmother to arrive too before we went to the rehab shop. I found a whole lot of useful things in that shop I must say! I bought a PenAgain pen and a key ring with pill container, the key ring will save me so much space as I can bring two of my normal doses (that can also be one increased dose in case of really BAD pain) of meds in it, and I always carry my keys! Now no more medicine containers and blister packs littering in my tiny handbag!
I also bought some kind of padding for my crutches, and while it does make it softer for the hands, the grip just gets too big so I think it's a fail :( The grip is too big so I can't walk with the crutches and wear my thumb splints at the same time! The thumb splints rub on my skin over the MCP joint just like the old splints did and my new ones are MUCH softer and shouldn't rub at all! I found this out the hard way when walking home from parents place tonight, it's a very short distance, takes only a couple of minutes for someone who can walk freely, and it was enough for the splint to make my thumbs really sore thanks to the grip being bigger on the crutches from padding.
I think I'll have to order a pair of smart crutches soon as those are made for issues like this: People having issues with forearm crutches! I could of course get another kind of forearm crutches too, with the softer, anatomical grip, but those are nearly as pricey as the SmartCrutch and the SmartCrutch is more adaptable and it comes in more fancy colors.
I'm really shattered now, time to sleep!
I also bought some kind of padding for my crutches, and while it does make it softer for the hands, the grip just gets too big so I think it's a fail :( The grip is too big so I can't walk with the crutches and wear my thumb splints at the same time! The thumb splints rub on my skin over the MCP joint just like the old splints did and my new ones are MUCH softer and shouldn't rub at all! I found this out the hard way when walking home from parents place tonight, it's a very short distance, takes only a couple of minutes for someone who can walk freely, and it was enough for the splint to make my thumbs really sore thanks to the grip being bigger on the crutches from padding.
I think I'll have to order a pair of smart crutches soon as those are made for issues like this: People having issues with forearm crutches! I could of course get another kind of forearm crutches too, with the softer, anatomical grip, but those are nearly as pricey as the SmartCrutch and the SmartCrutch is more adaptable and it comes in more fancy colors.
I'm really shattered now, time to sleep!
Saturday, October 27, 2012
Feeling more human
Today I've been feeling more human than in the entire week, even though I had an appointment in neighbor town at 9:45 this morning and I'm usually still asleep at that time.
Had an appointment with a occupational therapist who's dealing with hands a lot! Got a couple of new thumb splints and I'm put on a list to get fitted for silver ring splint for my left thumb once the fitting kit arrives to the rehabilitation center from the company in America making the ring splints (silverringsplint.com). I also got fitted for plastic ring splints today and ordered one for index finger, one for middle finger and one for ring finger. The index and middle finger rings are mainly for left hand to give me a better grip but I have the same size on right hand so will wear them there when my fingers there need better support, like if I need to write by hand. Ring finger splint is for right ring finger as it goes swan neck often when I close my hand, I'm going to wear the splint to prevent that finger from going as bad as the fingers on my left hand.
I'm currently wearing my new thumb splints now and they're great! They're considered rigid but they have no hard pieces in them, just an extra layer of the soft side of velcro which makes the fabric more rigid around the thumb and MCP joint. It's surprisingly stable but at the same time it doesn't immobilize the thumb very much. It's so comfy to wear I may actually sleep with them on tonight, just to give my thumbs and wrists a rest from odd positions. I often wake up with at least one wrist bent at over 90 degrees and that's definitely not good!
I'll be getting my plastic ring splints on November 20th, and during that appointment I'll also have special resting splints made for my wrists to wear when resting or sleeping, it will be custom made with Ortho plastic to fit me perfectly :)
Since I'm feeling much more energized today and in less pain than in the whole week, I've decided I feel fit enough to go to Gothenburg tomorrow! Mum and I will take a morning train, probably at 10:17 from my hometown. I'll be going to a rehab shop in Gothenburg and get those ice picks thingies to put on my crutches as winter is approaching fast now, in fact, today I wore my winter boots! Last night we got a little bit of snow hail (hail that is like small snowballs) and right now it's like -3C outside so it's going to get slippery outside soon! The first snow came yesterday in the shape of that snow like hail, and we're expecting snow slush or snow in a few days time.
Mum and I will also go to an American bakery in a mall in Gothenburg where they sell Jelly Belly jelly beans which mum and my grandmother are addicted to. I'll probably try Red velvet cake and maybe buy some nice cupcakes to bring home only because I haven't tried it before and we don't find American style cupcakes here often at all!
Oh well, I should try to catch some sleep now. Need to get up at about 7:30 or 8 in the morning to take a shower, dry hair and be at parents place at about 9 to have some breakfast (so my parents SEE that I eat something before going to Gothenburg) and then off to the station.
Hands are bothering me now anyways, hurts to type >.<
Had an appointment with a occupational therapist who's dealing with hands a lot! Got a couple of new thumb splints and I'm put on a list to get fitted for silver ring splint for my left thumb once the fitting kit arrives to the rehabilitation center from the company in America making the ring splints (silverringsplint.com). I also got fitted for plastic ring splints today and ordered one for index finger, one for middle finger and one for ring finger. The index and middle finger rings are mainly for left hand to give me a better grip but I have the same size on right hand so will wear them there when my fingers there need better support, like if I need to write by hand. Ring finger splint is for right ring finger as it goes swan neck often when I close my hand, I'm going to wear the splint to prevent that finger from going as bad as the fingers on my left hand.
I'm currently wearing my new thumb splints now and they're great! They're considered rigid but they have no hard pieces in them, just an extra layer of the soft side of velcro which makes the fabric more rigid around the thumb and MCP joint. It's surprisingly stable but at the same time it doesn't immobilize the thumb very much. It's so comfy to wear I may actually sleep with them on tonight, just to give my thumbs and wrists a rest from odd positions. I often wake up with at least one wrist bent at over 90 degrees and that's definitely not good!
I'll be getting my plastic ring splints on November 20th, and during that appointment I'll also have special resting splints made for my wrists to wear when resting or sleeping, it will be custom made with Ortho plastic to fit me perfectly :)
Since I'm feeling much more energized today and in less pain than in the whole week, I've decided I feel fit enough to go to Gothenburg tomorrow! Mum and I will take a morning train, probably at 10:17 from my hometown. I'll be going to a rehab shop in Gothenburg and get those ice picks thingies to put on my crutches as winter is approaching fast now, in fact, today I wore my winter boots! Last night we got a little bit of snow hail (hail that is like small snowballs) and right now it's like -3C outside so it's going to get slippery outside soon! The first snow came yesterday in the shape of that snow like hail, and we're expecting snow slush or snow in a few days time.
Mum and I will also go to an American bakery in a mall in Gothenburg where they sell Jelly Belly jelly beans which mum and my grandmother are addicted to. I'll probably try Red velvet cake and maybe buy some nice cupcakes to bring home only because I haven't tried it before and we don't find American style cupcakes here often at all!
Oh well, I should try to catch some sleep now. Need to get up at about 7:30 or 8 in the morning to take a shower, dry hair and be at parents place at about 9 to have some breakfast (so my parents SEE that I eat something before going to Gothenburg) and then off to the station.
Hands are bothering me now anyways, hurts to type >.<
Friday, October 26, 2012
The big meeting
I had the meeting this morning after a pretty much sleepless night. I was being kept awake by pain even though I had taken painkiller and once I finally fell asleep, it was impossible to stay asleep. Anyways, the meeting this morning went really well, apart from me being in complete agony while sitting for an hour on the chair in my doctors office. I was close to tears from pain most of that hour the meeting took, but at least my doctor, physiotherapist, occupational therapist and my Insurance person could see what my situation really is like and everyone agreed that I'm NOT fit for work at any conventional workplace. The Insurance person even suggested I apply for disability for people under age 30 so that's probably the road I'll take. It's definitely not fun having to make such a decision at age 27 but at the moment, I see no other way unless working from home one way or another and working from home is very uncommon here.
As a big surprise to me, my occupational therapist mentioned I may be eligible for a powerchair or mobility scooter to better get around within my town to spare my arms and legs. I'm not sure what to think of it, in a way it could be good, in another way I'm not sure I'm quite ready for it. It was hard enough making the decision that I need a manual wheelchair for bad days or long days out and trips out of town.
I'll see really...
After the meeting I went home, took a quick shower and then dozed off for 45 minutes before getting ready for my other meeting today. Other meeting also went well and after having dinner in the afternoon I took a nap of probably about 2 hours. Been tired all evening but at least feeling more alive now than I did this morning! Haven't needed more painkillers since the ones I took when I got back home from the first meeting today, hoping for an early night tonight as I haven't slept before 4am any day this week.
Probably putting away laptop for the night very soon, just relax for a while and then sleep.
As a big surprise to me, my occupational therapist mentioned I may be eligible for a powerchair or mobility scooter to better get around within my town to spare my arms and legs. I'm not sure what to think of it, in a way it could be good, in another way I'm not sure I'm quite ready for it. It was hard enough making the decision that I need a manual wheelchair for bad days or long days out and trips out of town.
I'll see really...
After the meeting I went home, took a quick shower and then dozed off for 45 minutes before getting ready for my other meeting today. Other meeting also went well and after having dinner in the afternoon I took a nap of probably about 2 hours. Been tired all evening but at least feeling more alive now than I did this morning! Haven't needed more painkillers since the ones I took when I got back home from the first meeting today, hoping for an early night tonight as I haven't slept before 4am any day this week.
Probably putting away laptop for the night very soon, just relax for a while and then sleep.
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