I really shouldn't be typing much at the moment as a wrist is acting up pretty bad, but anyways. I felt like blogging so I type now and suffer later.
Something has happened with my left wrist, one of the small bones has subluxed or dislocated in it and I can not get it back in place again! But seeing how I can move my wrist and the pain is manageable I have not gone to the ER with it as I absolutely despise "mixed waiting rooms". A mixed waiting room is where people come for various reasons, out of which some may be contagious. It's flu and norovirus season now so that makes me avoid mixed waiting rooms even more! I have however made an appointment with an occupational therapist/hand therapist for Tuesday and in the meantime I wear one of my rigid wrist braces as much as I can. Considering the fact that I am in a fair bit of pain from my wrist, I am very grateful that my basic pain management probably takes the edge off the wrist pain as well at the moment.
I have to admit it's quite bothersome that this little wrist bone has decided to act like a bitch, it's been out since probably late yesterday afternoon or at least yesterday evening. Normally when I sublux something, it goes out and pops right back in again, or only requires minor manipulation to pop back in place and normally the sublux isn't seen, this time I do have a bone visibly sticking out under my skin when I just flex my wrist backwards a little.
On another note: We finally got some proper snow! I haven't measured it but by the look of it, it looks like a couple of inches. First snow that really covers the ground this far in 2014! And all of a sudden, the ground looks prettier again and it looks more light outside. The little dust we had before had turned all dirty from vehicles.
Okay, time to let my wrist rest again. Can't handle actively using the computer for more than a few minutes at a time now.
Friday, January 31, 2014
Tuesday, January 7, 2014
The bane of my existence!
SI joints!
I truly have a love hate relationship with those things, for the most part it's hate as they tend to hurt a lot!
Right now my SI joints are flaring and I don't quite know why, I'm guessing it's the weather as we'll have a weather change in a few days time, but on the other hand, I've been flaring for days already while the weather has been stable.
Flaring SI joints has of course kept me awake at night because of pain when I lay on my back and of course my hips starts hurting too bad really fast when I sleep on my side which is my preferred way of sleeping, and of course my back and shoulders hurts when I sleep on my stomach, and obviously sleeping on my stomach also means waking up with a neck that's totally out of whack!
I'm also in a period where I'm experiencing symptoms from my neck like the feeling of my arms getting electrocuted. It's not a painful electrocution, more just like a TENS unit kind of feeling, but nevertheless, it's from my neck and it's not good! So of course I'm sleeping in my cervical collar to alleviate the symptoms (it's helping a lot) and sleeping with a collar is kinda limiting you to sleep on your back!
So, I'm stuck mostly on my back, on flaring SI joints. My doctor recently took me off my breakthrough medicine with his (lack of) logic that "You're on X, you shouldn't need Y" and I truly wish it was that easy! Sorry doc, pain doesn't work that way, taking away a breakthrough medicine won't take away the breakthrough pain it was treating! All it does is giving me as a patient, more pain, less freedom and lower quality of life when I do flare and need breakthrough medicine.
A pain patient will need both a base medicine and breakthrough medicine, just like a type 1 diabetic needs both basal and bolus insulin (or have a pump that's giving a continuous dose of rapid insulin as basal, with manual button pressing for boluses).
It's really sad how little doctors know about pain and its treatment, and how willing they are to prescribe off label medicines that are way more dangerous than proper painkillers, out of fear for the painkillers- when it's the off label medicines they should fear and restrict more! Needless to say, I am not taking any off label medicines, nor will I ever touch it! I know too much...
This is yet another night, a night without sleep. I don't know if and when I'll manage to fall asleep and if it will yet again require sleeping aid, the last couple of night has required sleeping aid at about 7 or 8am to get any sleep at all. I'm exhausted all the time, but the pain keeps me awake at night.
Have a feeling I may have to pop a pill soon again, just to at least fall asleep before dawn.
I truly have a love hate relationship with those things, for the most part it's hate as they tend to hurt a lot!
Right now my SI joints are flaring and I don't quite know why, I'm guessing it's the weather as we'll have a weather change in a few days time, but on the other hand, I've been flaring for days already while the weather has been stable.
Flaring SI joints has of course kept me awake at night because of pain when I lay on my back and of course my hips starts hurting too bad really fast when I sleep on my side which is my preferred way of sleeping, and of course my back and shoulders hurts when I sleep on my stomach, and obviously sleeping on my stomach also means waking up with a neck that's totally out of whack!
I'm also in a period where I'm experiencing symptoms from my neck like the feeling of my arms getting electrocuted. It's not a painful electrocution, more just like a TENS unit kind of feeling, but nevertheless, it's from my neck and it's not good! So of course I'm sleeping in my cervical collar to alleviate the symptoms (it's helping a lot) and sleeping with a collar is kinda limiting you to sleep on your back!
So, I'm stuck mostly on my back, on flaring SI joints. My doctor recently took me off my breakthrough medicine with his (lack of) logic that "You're on X, you shouldn't need Y" and I truly wish it was that easy! Sorry doc, pain doesn't work that way, taking away a breakthrough medicine won't take away the breakthrough pain it was treating! All it does is giving me as a patient, more pain, less freedom and lower quality of life when I do flare and need breakthrough medicine.
A pain patient will need both a base medicine and breakthrough medicine, just like a type 1 diabetic needs both basal and bolus insulin (or have a pump that's giving a continuous dose of rapid insulin as basal, with manual button pressing for boluses).
It's really sad how little doctors know about pain and its treatment, and how willing they are to prescribe off label medicines that are way more dangerous than proper painkillers, out of fear for the painkillers- when it's the off label medicines they should fear and restrict more! Needless to say, I am not taking any off label medicines, nor will I ever touch it! I know too much...
This is yet another night, a night without sleep. I don't know if and when I'll manage to fall asleep and if it will yet again require sleeping aid, the last couple of night has required sleeping aid at about 7 or 8am to get any sleep at all. I'm exhausted all the time, but the pain keeps me awake at night.
Have a feeling I may have to pop a pill soon again, just to at least fall asleep before dawn.
Wednesday, January 1, 2014
2013, the good, the bad and the ugly!
First of all, I want to wish each and everyone of you reading this a Happy New Year!
2014 came with a BANG little over two hours ago now, and this far it's been treating me nicely.
Thought it would be a good idea to review 2013 a little before I go to sleep.
2013 was a very intense year, it also felt very short. Many I've talked with asked the same question as me: Where did 2013 go?
This being said, it's not a year that I will miss. 2013 was a very mixed year, both health wise and emotionally, and emotionally it was probably one of the worst years I have been through this far in my 28 years.
There was a few good things happening in 2013 too, like the day where we celebrated my grandmother's 85th birthday, the concert with a Freddie Mercury and Queen sound alike band in March, getting my wheelchair so I could go out a bit more again, my trip to the Live and Function disability venue in April, mum's 60th birthday in April and the warm and sunny summer. And as odd as it sounds, my surgery on September 26th is also one of the good things that happened in 2013. And of course, getting to know quite a few new awesome friends from both near and afar!
2013 was also a bad year, and in some aspects outright ugly! Many tears fell throughout the year and I've seen and experienced things that made me age by at least ten years in just a few hours.
The by far most difficult thing to handle was the loss of my grandmother in June. She got a severe stroke on May 9th, just two days after we had been to the funeral of my great uncle's wife. My uncle had found my grandmother in bed in the afternoon of May 9th and the phone call from mum to let me know is something I'll never forget! My parents were out of town in their RV and they ended up driving over 250 miles that night to get home so mum and I could go to the hospital to visit my grandmother the day after. The following month we went to visit my grandmother as often as we could, I drove way more than my body allows me to these days, but I guess it was adrenaline that kept me going at the time. Then on June 8th when I drove to the hospital myself to visit my grandmother as my parents were yet again out of town in their RV. First met my uncle in the hospital and we visited my grandmother together, and then my uncle went home and I stayed for a bit longer. As I sat there alone in the room with my grandmother, holding her hand, I heard the all too familiar changes in breathing that I had heard almost 14 years earlier. Knowing what was coming, I called for a nurse to come in, minutes later my grandmother took her last breath while I held her hand. It was the second time in little less than 14 years I had been with a grandmother until the very end. First time I hadn't even turned 14 yet, this time I was going to turn 28 some months later, and this time I was alone and out of town with 50 miles to drive back home. I also made the calls to my uncle and mum about what had happened, the nurse was still in the room while I was talking with my uncle and she just nodded all the time and must have thought "Where on earth did this young lady learn what to say and stay so calm in a situation like this?" The nurse even offered to make the calls but I said I could do it.
That evening of June 8th aged me... I felt at least 10 years older when I got home that night, than I had done when I drove to the hospital in the afternoon.
The following weeks were very busy with arranging my grandmother's funeral, going through her apartment so it could be put up for sale before my parents left for their summer vacation and of course, mourning the loss of my grandmother!
This whole ordeal changed me. While I've always been an introvert, I'm even less social now. I was under constant stress and fear while my grandmother was in the hospital, I was literally jumping high every time my phone made a sound. So since June, I've let go of my phone. I put it in different rooms, mute it often and basically have it mostly for my own safety than for people to reach me. Apart from very very few friends, I haven't really been wanting to or had the energy to talk to people other than my parents. Family has always been very important to me, but even more so now!
2013 was also a year with a fair bit of health issues for me. My EDS took quite a dip and my issues with my uterus was worse than ever, especially after a Mirena IUD was fitted in February. Finally in September I had a hysterectomy which meant the end of many years of pure hell every month! And that is why the surgery is on the list of good things happening in 2013.
But the effects on my joints from the Mirena and oral mini pills, is something I'll probably have to live with for the rest of my life. I'm currently able to walk only about 20 meters before the pain in my SI joints, hips and lower back gets too bad- hence the wheelchair and the wheelchair being on the positive list too.
Is it any fun needing a wheelchair? Nope! But I decided to embrace it instead of seeing it as something negative or a failure.
With everything that happened in 2013 that was rough both physically and emotionally, I sure hope 2014 will be a much better year!
The last few weeks of 2013 were really busy weeks, I had a lot of things I needed to do before Christmas and with very limited energy, things take a bit longer time than it would have done normally.
I have a few projects to deal with this year and will just take it little by little, no stress or pressure as stress is really bad for me and overdoing it can cause paralyzing fatigue.
Now I shall try to sleep, or I won't be able to wake up on time to watch the New Year's concert from Vienna on TV!
2014 came with a BANG little over two hours ago now, and this far it's been treating me nicely.
Thought it would be a good idea to review 2013 a little before I go to sleep.
2013 was a very intense year, it also felt very short. Many I've talked with asked the same question as me: Where did 2013 go?
This being said, it's not a year that I will miss. 2013 was a very mixed year, both health wise and emotionally, and emotionally it was probably one of the worst years I have been through this far in my 28 years.
There was a few good things happening in 2013 too, like the day where we celebrated my grandmother's 85th birthday, the concert with a Freddie Mercury and Queen sound alike band in March, getting my wheelchair so I could go out a bit more again, my trip to the Live and Function disability venue in April, mum's 60th birthday in April and the warm and sunny summer. And as odd as it sounds, my surgery on September 26th is also one of the good things that happened in 2013. And of course, getting to know quite a few new awesome friends from both near and afar!
2013 was also a bad year, and in some aspects outright ugly! Many tears fell throughout the year and I've seen and experienced things that made me age by at least ten years in just a few hours.
The by far most difficult thing to handle was the loss of my grandmother in June. She got a severe stroke on May 9th, just two days after we had been to the funeral of my great uncle's wife. My uncle had found my grandmother in bed in the afternoon of May 9th and the phone call from mum to let me know is something I'll never forget! My parents were out of town in their RV and they ended up driving over 250 miles that night to get home so mum and I could go to the hospital to visit my grandmother the day after. The following month we went to visit my grandmother as often as we could, I drove way more than my body allows me to these days, but I guess it was adrenaline that kept me going at the time. Then on June 8th when I drove to the hospital myself to visit my grandmother as my parents were yet again out of town in their RV. First met my uncle in the hospital and we visited my grandmother together, and then my uncle went home and I stayed for a bit longer. As I sat there alone in the room with my grandmother, holding her hand, I heard the all too familiar changes in breathing that I had heard almost 14 years earlier. Knowing what was coming, I called for a nurse to come in, minutes later my grandmother took her last breath while I held her hand. It was the second time in little less than 14 years I had been with a grandmother until the very end. First time I hadn't even turned 14 yet, this time I was going to turn 28 some months later, and this time I was alone and out of town with 50 miles to drive back home. I also made the calls to my uncle and mum about what had happened, the nurse was still in the room while I was talking with my uncle and she just nodded all the time and must have thought "Where on earth did this young lady learn what to say and stay so calm in a situation like this?" The nurse even offered to make the calls but I said I could do it.
That evening of June 8th aged me... I felt at least 10 years older when I got home that night, than I had done when I drove to the hospital in the afternoon.
The following weeks were very busy with arranging my grandmother's funeral, going through her apartment so it could be put up for sale before my parents left for their summer vacation and of course, mourning the loss of my grandmother!
This whole ordeal changed me. While I've always been an introvert, I'm even less social now. I was under constant stress and fear while my grandmother was in the hospital, I was literally jumping high every time my phone made a sound. So since June, I've let go of my phone. I put it in different rooms, mute it often and basically have it mostly for my own safety than for people to reach me. Apart from very very few friends, I haven't really been wanting to or had the energy to talk to people other than my parents. Family has always been very important to me, but even more so now!
2013 was also a year with a fair bit of health issues for me. My EDS took quite a dip and my issues with my uterus was worse than ever, especially after a Mirena IUD was fitted in February. Finally in September I had a hysterectomy which meant the end of many years of pure hell every month! And that is why the surgery is on the list of good things happening in 2013.
But the effects on my joints from the Mirena and oral mini pills, is something I'll probably have to live with for the rest of my life. I'm currently able to walk only about 20 meters before the pain in my SI joints, hips and lower back gets too bad- hence the wheelchair and the wheelchair being on the positive list too.
Is it any fun needing a wheelchair? Nope! But I decided to embrace it instead of seeing it as something negative or a failure.
With everything that happened in 2013 that was rough both physically and emotionally, I sure hope 2014 will be a much better year!
The last few weeks of 2013 were really busy weeks, I had a lot of things I needed to do before Christmas and with very limited energy, things take a bit longer time than it would have done normally.
I have a few projects to deal with this year and will just take it little by little, no stress or pressure as stress is really bad for me and overdoing it can cause paralyzing fatigue.
Now I shall try to sleep, or I won't be able to wake up on time to watch the New Year's concert from Vienna on TV!
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