It seems like everything is hitting me at the same time, like some kind of mega flare or something!
Seriously, I'm not joking when I call it a mega flare!
I'm currently symptomatic of the CCI to the point where I've been laying down a lot to relieve symptoms and I've needed to wear my Aspen Vista collar again, both sometimes in daytime and when I sleep. It's been a while since I last needed to wear my collar at all. I should probably wear it more than I do at the moment, but I do want to keep my muscles in my neck too, so I try to limit the time I wear the collar and only wear it when the symptoms become unbearable.
I'm having a hell of a time with my body from my waist down with a lot of pain in my lower back that radiates down my legs, and my legs feel like they're full of local anesthetics and lead, I'm barely able to move my legs when having that feeling of local anesthetics and lead in them and getting around at home is kinda interesting to say the least. Apart from the pain in and around my hips, knees and ankles and the pain radiating down from my back, my legs are a bit numb so if I pinch my thighs a bit, it doesn't hurt as much as it normally does- but I don't try that all that much, because I don't want to look like a smurf! This together with other symptoms I'm having indicates tethered cord syndrome or occult tethered cord syndrome, it's yet another complication of Ehlers-Danlos Syndrome. I have just about every symptom of it, and it has been going on for years actually, I just haven't had my legs feeling like this before, at least not this much. It's yet another thing I'll need to bring up with a doctor. Actually the tethered cord symptoms along with the pain in and around joints below my waist, and the rapid fatigue, are the main reasons why I'm using a wheelchair, the wheelchair also helps my upper back and spares my arms and shoulders compared to crutches or a walking stick, it's also individually set up for me so it's the only chair I can sit in somewhat comfortably, so there you have it.
And as I've mentioned in the post yesterday, I'm having hand pain that at the moment is impairing the use of my hands which means I've had to limit my typing compared to my normal.
I also seem to have caught tendonitis in my left elbow.
With the very intense breakthrough pain I've had (and have) today, I was for a while considering going to the ER as the pain is so bad I find myself holding my breath at times, something I only do when being in intense pain and I do it unconsciously! Now I do have a high pain tolerance, I can break a bone and barely flinch or severely sprain a wrist and just keep going, so when I am considering going to hospital because of pain, it's bad!
Now seriously body! Why does everything have to hit at the same time? I have things to do, a life to live! I don't have time to be in this much pain!
Tomorrow it's supposed to hit 27 degrees C here (81F) and I have every intention to go out of town to enjoy the nice day! My plan is to go to Gothenburg and just sit in the big park to enjoy some ice cream in the sun and maybe meet up with some friends too. But if I can go or not depends on the condition of my legs, and if I'm able to be upright. I'll be driving if going to Gothenburg so have to feel fit to drive. It's a 100 mile round trip too! I won't know until I wake up tomorrow if I can go or not. But I'm hoping I can!
Thursday, May 22, 2014
Tuesday, May 20, 2014
Doctor appointment and CCI
My hands are still hurting pretty bad so I've been limiting my typing, but today I just have to give you all an update!
I had an appointment this morning with a doctor, I did not know if it would be my primary care physician or someone else at the clinic, but it was an appointment anyways, mainly to discuss my positive experience on the Betamethasone.
I got a young doctor today who was doing her internship for her degree, she had been studying medicine abroad rather than here in Sweden and I have to say, her level was very very high!
It was the most amazing appointment I've had with a doctor! She truly "got it" and she was interested and really listened. While she was totally against continuous low dose of Betamethasone (and I understand it as it IS a steroid), we talked about things in general, the struggles people with Ehlers-Danlos Syndrome have when it comes to doctors and always having to advocate for yourself and basically know more than your doctors or you're screwed.
I also mentioned the issues I'm having with my neck and how it has been left as it is apart from having my Aspen Vista cervical collar. She looked almost afraid when I told her about my symptoms from my neck and how it affects my life, I also showed her an image from my MRI in August and she could also see what friends in Ehlers-Danlos groups and Chiari groups on Facebook has seen: There's something odd with my odontoid bone! Someone also mentioned that my Clivo Axial angle is not right. Now these are finds that indicates Cranio Cervical Instability also known as CCI, I also have a lot of symptoms that fits with CCI and it is sadly a common complication to Ehlers-Danlos Syndrome due to the weakened connective tissue. Now when a doctor has also seen that something is fishy with my MRI (and she's going to look at my images more) and literally called the radiologist at the hospital who initially looked at my MRI, an idiot, things may actually start to happen! The doctor I saw today is going to speak with her mentor/supervisor at the clinic on Thursday to discuss my case, and she's going to do all in her might to get me to a neurosurgeon at the university hospital so I can get a proper diagnose and hopefully a treatment plan and treatment! She was also pretty angry when I told her the best way to see Chiari is in an upright MRI, but that there's only one such machine in the entire country (over 500 miles away) and its resolution is really bad, it doesn't make sense at all that the three biggest university hospitals in the country doesn't have an upright MRI machine each, if the three biggest hospitals got upright MRI's too, that would mean one machine in the north (the existing one), one in the capital, one on the west coast and one down in the south. Like I said to her "We're over a thousand living with Ehlers-Danlos Syndrome in Sweden and CCI and Chiari malformation are common complications with the syndrome, and currently we can't even get proper imaging to properly diagnose those issues! Plus everyone else in the country who may need an upright MRI" Upright MRI also happens to be the best way to see Dural Ectasia in Marfan Syndrome, plus being beneficial for a whole range of other things as us humans spend a big part of our lives upright and things may look different while upright compared to supine.
I'm truly beginning to have some hope again when it comes to my neck! Maybe I'll actually get a part of my life back again if my neck is possible to fix!
Now the prospect of maybe needing a surgery fusing the skull and at least C1-C2 together, is freaking me out as it's such a sensitive and high risk area, but at the same time, such a surgery can improve the quality of life so much for a CCI sufferer by stabilizing the instability of the cranio cervical junction, I know many who's been through it and doing much better after their fusion than before!
I have a feeling this young doctor I saw today will be an excellent MD once she finishes all the internships. Who knows, maybe I even planted a small seed today so she will specialize in rare conditions? She did appreciate that I was so open (and she complimented me for being very positive despite my health situation) and giving her an insight in the life with a rare, chronic condition.
Okay, now my hands need a rest from typing again... But I really had to share this!
I had an appointment this morning with a doctor, I did not know if it would be my primary care physician or someone else at the clinic, but it was an appointment anyways, mainly to discuss my positive experience on the Betamethasone.
I got a young doctor today who was doing her internship for her degree, she had been studying medicine abroad rather than here in Sweden and I have to say, her level was very very high!
It was the most amazing appointment I've had with a doctor! She truly "got it" and she was interested and really listened. While she was totally against continuous low dose of Betamethasone (and I understand it as it IS a steroid), we talked about things in general, the struggles people with Ehlers-Danlos Syndrome have when it comes to doctors and always having to advocate for yourself and basically know more than your doctors or you're screwed.
I also mentioned the issues I'm having with my neck and how it has been left as it is apart from having my Aspen Vista cervical collar. She looked almost afraid when I told her about my symptoms from my neck and how it affects my life, I also showed her an image from my MRI in August and she could also see what friends in Ehlers-Danlos groups and Chiari groups on Facebook has seen: There's something odd with my odontoid bone! Someone also mentioned that my Clivo Axial angle is not right. Now these are finds that indicates Cranio Cervical Instability also known as CCI, I also have a lot of symptoms that fits with CCI and it is sadly a common complication to Ehlers-Danlos Syndrome due to the weakened connective tissue. Now when a doctor has also seen that something is fishy with my MRI (and she's going to look at my images more) and literally called the radiologist at the hospital who initially looked at my MRI, an idiot, things may actually start to happen! The doctor I saw today is going to speak with her mentor/supervisor at the clinic on Thursday to discuss my case, and she's going to do all in her might to get me to a neurosurgeon at the university hospital so I can get a proper diagnose and hopefully a treatment plan and treatment! She was also pretty angry when I told her the best way to see Chiari is in an upright MRI, but that there's only one such machine in the entire country (over 500 miles away) and its resolution is really bad, it doesn't make sense at all that the three biggest university hospitals in the country doesn't have an upright MRI machine each, if the three biggest hospitals got upright MRI's too, that would mean one machine in the north (the existing one), one in the capital, one on the west coast and one down in the south. Like I said to her "We're over a thousand living with Ehlers-Danlos Syndrome in Sweden and CCI and Chiari malformation are common complications with the syndrome, and currently we can't even get proper imaging to properly diagnose those issues! Plus everyone else in the country who may need an upright MRI" Upright MRI also happens to be the best way to see Dural Ectasia in Marfan Syndrome, plus being beneficial for a whole range of other things as us humans spend a big part of our lives upright and things may look different while upright compared to supine.
I'm truly beginning to have some hope again when it comes to my neck! Maybe I'll actually get a part of my life back again if my neck is possible to fix!
Now the prospect of maybe needing a surgery fusing the skull and at least C1-C2 together, is freaking me out as it's such a sensitive and high risk area, but at the same time, such a surgery can improve the quality of life so much for a CCI sufferer by stabilizing the instability of the cranio cervical junction, I know many who's been through it and doing much better after their fusion than before!
I have a feeling this young doctor I saw today will be an excellent MD once she finishes all the internships. Who knows, maybe I even planted a small seed today so she will specialize in rare conditions? She did appreciate that I was so open (and she complimented me for being very positive despite my health situation) and giving her an insight in the life with a rare, chronic condition.
Okay, now my hands need a rest from typing again... But I really had to share this!
Thursday, May 15, 2014
It's been a year (plus some days) since the stroke hit...
I've been quiet for a little while, a week to be more precise. Have been struggling some with my body lately, spinal headache, neck pain and also issues with the small joints of my hands and fingers so I haven't been wanting to type much. I'm also going through a somewhat heavy period at the moment emotionally as May 9th marked one year since my biological maternal grandmother had a severe stroke which effects would later claim her life.
So while it is Ehlers-Danlos Syndrome awareness month, I am dedicating this blog post to my grandmother and to stroke awareness.
My grandmother Lizzie was born on February 28th 1928, she grew up with her parents and her brothers and grew up to become a very independent, stubborn yet very caring woman with her heart in the right place. She got two children, my uncle and my mum and there's five years apart between my uncle and mum, my uncle being the older.
Due to my grandmother being a single mother in the 1950's, she faced some hardships from society, at the time when my uncle was born, she still lived with my great grandparents. At the time when my mum was born, she tried to get an apartment of her own in the same block, but the landlord refused to give her the apartment that was available "as there's already too many children in the building" yet my mum had already been born and already living there. It was just the landlord making a point about my grandmother being a single mother. Seeing no other option, my grandmother took mum to an orphanage as a temporary solution while she was fixing her housing situation. She got the apartment she had been denied before, but at that time, my mum had already gotten to a foster home which would eventually become the home where she grew up. When mum turned one year old, my grandmother came to visit mum in the foster home and when she saw how well cared for and loved my mum was in the foster home, she said that she'd sign the papers if the foster parents wanted to adopt, as all she wanted was the best for my mum and she saw that she couldn't give her that stability herself. Papers were signed, mum grew up with her now adoptive parents and had a very good childhood, she always knew she was adopted too.
After the papers had been signed, my grandmother was no longer allowed to make contact, but she never stopped thinking about her daughter, not a day went by without her thinking about my mum.
Years went by, in the early 1990's my grandmother was on a bus trip somewhere and there happened to be a lady from my hometown on the same bus, that lady knew my adoptive grandparents and gave my grandmother the news that her daughter was now married and had a daughter of her own. My grandmother was so proud! She was a grandmother!
Some more years passed by and on my mum's birthday in 1997 we got a call from this to us unknown man in Stockholm, this man shows to be a younger brother of my mother, on their fathers side, the reason my grandfather had left my grandmother while she was pregnant with mum. My biological grandfather had passed away that Easter and mum's name had showed up in some documents. My mum and younger uncle had not known about each other's existence up until then.
After that call, mum decided it was time to look for her roots, it didn't take very long to get an address and phone number to my grandmother. Mum tried to call a few times but no one was home, so she wrote a letter and left address and phone number to us in the letter. One day when I got home from school, and was the first one to come home, the phone rang and it was my grandmother! By the time mum came home from work, my grandmother and I had been talking on the phone for quite some time and mum got the phone from me and she and my grandmother talked for even longer and arrangements were made to go visit a short while later.
My grandmother had been waiting for that call and letter for 43 years!
The weekend of the meeting came, and my parents and I went to my grandmother. It was instant bonding! As if we had never been apart! Since that day, both me and my parents have had a very close relationship with my grandmother and uncle, we would visit each other as often as possible, my mum and grandmother would talk on the phone a couple of times every week, my mum and grandmother even went on a cruise together in 2006 all the way from Bergen to Kirkenes in Norway.
How things went with the younger uncle? My grandmother embraced him like a son of her own! And they had a great relationship as well, and me and my parents have a great relationship with that uncle too, as does my older uncle!
When we were first reunited, my grandmother was 69 years old, and to be honest, she didn't seem to age during the time we had with her. She was plagued by chronic pain from a young age, and a pretty severe kyphosis and scoliosis, so she was retired on disability from a pretty young age, yet she lived a very social and active life, she had a passion for crafting and an amazing eye for detail. She could cross stitch the most complicated cross stitch patterns you can find and make the most amazing embroidery you can imagine, she was also an avid knitter. Basically, you'd never see my grandmother without some embroidery or knitting project in her hands!
She kept embroidering and knitting up until the very end, she was in fact working on a table cloth at the time when the stroke hit her last year, taking away her ability to use her right side and her ability to talk.
My grandmother was 85 years old, she was very active, social and never even owned a walking stick, and apart from her pain and spine, very healthy with very little age related health issues. I believe she may have had Ehlers-Danlos Syndrome at a mild level due to the severity of her spine and long history of pain, and also migraines. There is hypermobility on that side of my family too, and my grandmother, as I mentioned above, didn't seem to age at all between 69 and 85, she looked very young for her age and her skin was silky soft.
So, on May 9th last year, my life was changed forever. My parents were traveling in the south in their RV due to it being a long weekend, I was at home, it was just a regular Thursday until mum called me in the early evening. My older uncle had been trying to get in touch with my grandmother that day but she hadn't picked up the phone, so he had gone to her apartment to check on her and had found her in bed still in nightdress. Ambulance was called and she was taken to hospital. My parents immediately turned around and started the long drive home, they were about 250 miles away by the time of the call. They came back home at about 1am.
Friday May 10th mum and I went to the hospital to see my grandmother and talk with the staff and my uncle. At first the prognosis was slightly positive. Due to the time that had likely passed between the stroke hitting and her coming under medical care, there wasn't much hope for a full recovery, but there was hope for some recovery and survival. My grandmother always knew where she was, who we were and what had happened to her, she just couldn't speak or use her right side of her body. But the trooper that she was, she was up in a wheelchair already that day when we visited her and we even saw what looked like controlled movements in her right foot. Things were looking really good!
A few days later, we got a call again. My grandmother had developed pneumonia in the hospital, pneumonia happens so easily in elderly people as soon as they get bedridden and unable to cough properly. The first slightly positive outlook now started to look more grim. Time went by, we went to visit as often as possible, I've calculated that I drove about 1000 miles in a month just between home and the hospital.
With the pneumonia, we knew it would only go one way. One evening we got the dreaded call from the hospital that they believed it wasn't much time left, we went to the hospital immediately, I went home late that night due to being in too much pain to sit through the night, mum stayed the night with my grandmother. My grandmother pulled through that night, and the next day, and the day after that, which was Mother's Day here, she was even up in the wheelchair again to our great surprise when we came to see her.
My grandmother appeared to recover some again so little over a week later, my parents had a week long vacation where they again traveled south in their RV.
On June 8th, I drove down to the hospital on my own and me and my uncle visited my grandmother. I stayed for longer than my uncle as he lives in Gothenburg and could visit more easily, and he isn't a fan of hospitals. As I was sitting alone with my grandmother, her breathing changed so I called for nurses. A few minutes later, she was gone, she had passed over to the other side peacefully, surrounded by love from her only grandchild! We firmly believe she had chosen her time and waited for me, she knew I could handle being there when it happened, she knew I had seen it before, almost 14 years earlier when my adoptive grandmother passed away from old age (88) and several rounds of pneumonia.
I am very grateful that I could be there until the very end, and it puts our minds at ease in the family too, knowing she went peacefully and surrounded by love.
I made all the difficult calls to my uncle and mum, the nurses had offered to do it for me, but I felt it was better I did it.
Strokes are relentless! They can kill instantly or slowly like in my grandmothers case, and they can take away a persons entire identity by claiming speech and memory. Rapid medical intervention is essential when someone suffers a stroke, regardless of severity of the stroke. They say that if you get treatment within three hours you have good chances of recovery. We believe my grandmother may have been waiting for help for about 6 hours or even longer.
Knowing the signs of a stroke can save someones life! The signs of a stroke includes but aren't limited to:
- Face drooping and inability to smile
- Arm weakness, the person can't hold out both arms
- Speech difficulty, speech may be slurred and/or the person can not repeat a simple sentence
You can read more here: http://strokeassociation.org/STROKEORG/WarningSigns/Stroke-Warning-Signs-and-Symptoms_UCM_308528_SubHomePage.jsp
If someone around you show signs of a stroke, immediately call for an ambulance! You may well save that person's life!
Keep an eye on people around you, check regularly on elderly around you or people you know may have an increased risk of strokes. A simple phone call to the person can change everything! If someone isn't responding, go check on him or her to be on the safe side.
While my grandmother couldn't be saved as in still being alive today, my uncle's actions of going there to check on her when she didn't pick up the phone did save her in the sense that we got one more month together and both her and us in the family and her friends had a chance to say our good byes, and she got to pass surrounded by love, rather than alone and later being found without anyone knowing for how long she had been laying there or if her passing had been peaceful or full of panic.
Knowing the signs and checking on someone can make all the difference in the world!
The month when my grandmother was in the hospital after her stroke was the most physically and emotionally exhausting time of my life, but I came through it being a stronger person. It changed my view on life in a way, taught me to appreciate things even more.
The year of all the firsts has been rough, I still cry at times, missing her voice and missing seeing her. She was the kind of old lady you would have thought would reach 100 years old, and I'm sure she would have, had it not been for the stroke. I had seen her just two days before the stroke, and she had been totally fine then. Things can change so fast!
This is a long post, and it wasn't easy to write it. But I felt I wanted to share it, especially now as I'm in the one year anniversary of the most difficult time of my life.
Now my hands hurts like crazy though!
So while it is Ehlers-Danlos Syndrome awareness month, I am dedicating this blog post to my grandmother and to stroke awareness.
My grandmother Lizzie was born on February 28th 1928, she grew up with her parents and her brothers and grew up to become a very independent, stubborn yet very caring woman with her heart in the right place. She got two children, my uncle and my mum and there's five years apart between my uncle and mum, my uncle being the older.
Due to my grandmother being a single mother in the 1950's, she faced some hardships from society, at the time when my uncle was born, she still lived with my great grandparents. At the time when my mum was born, she tried to get an apartment of her own in the same block, but the landlord refused to give her the apartment that was available "as there's already too many children in the building" yet my mum had already been born and already living there. It was just the landlord making a point about my grandmother being a single mother. Seeing no other option, my grandmother took mum to an orphanage as a temporary solution while she was fixing her housing situation. She got the apartment she had been denied before, but at that time, my mum had already gotten to a foster home which would eventually become the home where she grew up. When mum turned one year old, my grandmother came to visit mum in the foster home and when she saw how well cared for and loved my mum was in the foster home, she said that she'd sign the papers if the foster parents wanted to adopt, as all she wanted was the best for my mum and she saw that she couldn't give her that stability herself. Papers were signed, mum grew up with her now adoptive parents and had a very good childhood, she always knew she was adopted too.
After the papers had been signed, my grandmother was no longer allowed to make contact, but she never stopped thinking about her daughter, not a day went by without her thinking about my mum.
Years went by, in the early 1990's my grandmother was on a bus trip somewhere and there happened to be a lady from my hometown on the same bus, that lady knew my adoptive grandparents and gave my grandmother the news that her daughter was now married and had a daughter of her own. My grandmother was so proud! She was a grandmother!
Some more years passed by and on my mum's birthday in 1997 we got a call from this to us unknown man in Stockholm, this man shows to be a younger brother of my mother, on their fathers side, the reason my grandfather had left my grandmother while she was pregnant with mum. My biological grandfather had passed away that Easter and mum's name had showed up in some documents. My mum and younger uncle had not known about each other's existence up until then.
After that call, mum decided it was time to look for her roots, it didn't take very long to get an address and phone number to my grandmother. Mum tried to call a few times but no one was home, so she wrote a letter and left address and phone number to us in the letter. One day when I got home from school, and was the first one to come home, the phone rang and it was my grandmother! By the time mum came home from work, my grandmother and I had been talking on the phone for quite some time and mum got the phone from me and she and my grandmother talked for even longer and arrangements were made to go visit a short while later.
My grandmother had been waiting for that call and letter for 43 years!
The weekend of the meeting came, and my parents and I went to my grandmother. It was instant bonding! As if we had never been apart! Since that day, both me and my parents have had a very close relationship with my grandmother and uncle, we would visit each other as often as possible, my mum and grandmother would talk on the phone a couple of times every week, my mum and grandmother even went on a cruise together in 2006 all the way from Bergen to Kirkenes in Norway.
How things went with the younger uncle? My grandmother embraced him like a son of her own! And they had a great relationship as well, and me and my parents have a great relationship with that uncle too, as does my older uncle!
When we were first reunited, my grandmother was 69 years old, and to be honest, she didn't seem to age during the time we had with her. She was plagued by chronic pain from a young age, and a pretty severe kyphosis and scoliosis, so she was retired on disability from a pretty young age, yet she lived a very social and active life, she had a passion for crafting and an amazing eye for detail. She could cross stitch the most complicated cross stitch patterns you can find and make the most amazing embroidery you can imagine, she was also an avid knitter. Basically, you'd never see my grandmother without some embroidery or knitting project in her hands!
She kept embroidering and knitting up until the very end, she was in fact working on a table cloth at the time when the stroke hit her last year, taking away her ability to use her right side and her ability to talk.
My grandmother was 85 years old, she was very active, social and never even owned a walking stick, and apart from her pain and spine, very healthy with very little age related health issues. I believe she may have had Ehlers-Danlos Syndrome at a mild level due to the severity of her spine and long history of pain, and also migraines. There is hypermobility on that side of my family too, and my grandmother, as I mentioned above, didn't seem to age at all between 69 and 85, she looked very young for her age and her skin was silky soft.
So, on May 9th last year, my life was changed forever. My parents were traveling in the south in their RV due to it being a long weekend, I was at home, it was just a regular Thursday until mum called me in the early evening. My older uncle had been trying to get in touch with my grandmother that day but she hadn't picked up the phone, so he had gone to her apartment to check on her and had found her in bed still in nightdress. Ambulance was called and she was taken to hospital. My parents immediately turned around and started the long drive home, they were about 250 miles away by the time of the call. They came back home at about 1am.
Friday May 10th mum and I went to the hospital to see my grandmother and talk with the staff and my uncle. At first the prognosis was slightly positive. Due to the time that had likely passed between the stroke hitting and her coming under medical care, there wasn't much hope for a full recovery, but there was hope for some recovery and survival. My grandmother always knew where she was, who we were and what had happened to her, she just couldn't speak or use her right side of her body. But the trooper that she was, she was up in a wheelchair already that day when we visited her and we even saw what looked like controlled movements in her right foot. Things were looking really good!
A few days later, we got a call again. My grandmother had developed pneumonia in the hospital, pneumonia happens so easily in elderly people as soon as they get bedridden and unable to cough properly. The first slightly positive outlook now started to look more grim. Time went by, we went to visit as often as possible, I've calculated that I drove about 1000 miles in a month just between home and the hospital.
With the pneumonia, we knew it would only go one way. One evening we got the dreaded call from the hospital that they believed it wasn't much time left, we went to the hospital immediately, I went home late that night due to being in too much pain to sit through the night, mum stayed the night with my grandmother. My grandmother pulled through that night, and the next day, and the day after that, which was Mother's Day here, she was even up in the wheelchair again to our great surprise when we came to see her.
My grandmother appeared to recover some again so little over a week later, my parents had a week long vacation where they again traveled south in their RV.
On June 8th, I drove down to the hospital on my own and me and my uncle visited my grandmother. I stayed for longer than my uncle as he lives in Gothenburg and could visit more easily, and he isn't a fan of hospitals. As I was sitting alone with my grandmother, her breathing changed so I called for nurses. A few minutes later, she was gone, she had passed over to the other side peacefully, surrounded by love from her only grandchild! We firmly believe she had chosen her time and waited for me, she knew I could handle being there when it happened, she knew I had seen it before, almost 14 years earlier when my adoptive grandmother passed away from old age (88) and several rounds of pneumonia.
I am very grateful that I could be there until the very end, and it puts our minds at ease in the family too, knowing she went peacefully and surrounded by love.
I made all the difficult calls to my uncle and mum, the nurses had offered to do it for me, but I felt it was better I did it.
Strokes are relentless! They can kill instantly or slowly like in my grandmothers case, and they can take away a persons entire identity by claiming speech and memory. Rapid medical intervention is essential when someone suffers a stroke, regardless of severity of the stroke. They say that if you get treatment within three hours you have good chances of recovery. We believe my grandmother may have been waiting for help for about 6 hours or even longer.
Knowing the signs of a stroke can save someones life! The signs of a stroke includes but aren't limited to:
- Face drooping and inability to smile
- Arm weakness, the person can't hold out both arms
- Speech difficulty, speech may be slurred and/or the person can not repeat a simple sentence
You can read more here: http://strokeassociation.org/STROKEORG/WarningSigns/Stroke-Warning-Signs-and-Symptoms_UCM_308528_SubHomePage.jsp
If someone around you show signs of a stroke, immediately call for an ambulance! You may well save that person's life!
Keep an eye on people around you, check regularly on elderly around you or people you know may have an increased risk of strokes. A simple phone call to the person can change everything! If someone isn't responding, go check on him or her to be on the safe side.
While my grandmother couldn't be saved as in still being alive today, my uncle's actions of going there to check on her when she didn't pick up the phone did save her in the sense that we got one more month together and both her and us in the family and her friends had a chance to say our good byes, and she got to pass surrounded by love, rather than alone and later being found without anyone knowing for how long she had been laying there or if her passing had been peaceful or full of panic.
Knowing the signs and checking on someone can make all the difference in the world!
The month when my grandmother was in the hospital after her stroke was the most physically and emotionally exhausting time of my life, but I came through it being a stronger person. It changed my view on life in a way, taught me to appreciate things even more.
The year of all the firsts has been rough, I still cry at times, missing her voice and missing seeing her. She was the kind of old lady you would have thought would reach 100 years old, and I'm sure she would have, had it not been for the stroke. I had seen her just two days before the stroke, and she had been totally fine then. Things can change so fast!
This is a long post, and it wasn't easy to write it. But I felt I wanted to share it, especially now as I'm in the one year anniversary of the most difficult time of my life.
Now my hands hurts like crazy though!
Thursday, May 8, 2014
Getting a wheelchair with Ehlers-Danlos Syndrome
In light of Ehlers-Danlos awareness month and having more and more friends with Ehlers-Danlos Syndrome getting a, or considering getting a wheelchair, I thought I'd share my experiences and advice on wheelchairs in this post.
For many, getting a wheelchair is a big thing, and many see it as a failure, as if you're giving up.
Getting a wheelchair is NOT a failure! Getting a wheelchair is a way for you to fight back against your condition, a way to get out of your house more, a way to participate in more activities that you've had to skip due to it requiring more standing and walking than you can handle, and it's also likely you'll suffer less pain afterwards in a wheelchair than on your feet. Now, how's that failure?
I have had my wheelchair for over a year now and I use it as soon as I go out of my apartment which is almost every day. Thanks to my wheelchair I'm able to go places independently, I can go to the supermarket on my own without relying on the car unless I need to buy more than a backpack can hold, I'm participating in social activities both in and out of town, I can be a bit more spontaneous and just go to a mall or something whenever I feel up for it as I don't need to worry about whether there will be places to rest or not, I have my own comfy seat under my bum already! And in fact, since my wheelchair is set up just for me, it's the only upright chair I can sit in for a somewhat decent amount of time without getting too much pain.
So, I've had my wheelchair for little over a year, and while I obviously don't have the same wealth of experience as someone who's been a chair user for many years, I do have a fair bit of experience by now and I try to keep up with the current models and development when it comes to wheelchairs and the all important accessory for it: the cushion.
Getting a wheelchair with Ehlers-Danlos Syndrome can be a bit special as we have our loose joints to keep in mind as well, both here and now and down the road. Some people with Ehlers-Danlos Syndrome manage just fine in a manual wheelchair for a long time, others may need electric assisted wheels instantly or a short while after getting their wheelchair as self propelling may be too rough on shoulders, wrists and hands. I belong to the group of people doing fine with a fully manual wheelchair and that despite my shoulders subluxing at times just by moving my arm the wrong way, and I'm completely independent in my wheelchair as long as the terrain isn't too rough, or a slope or ramp is too steep.
When you first request a wheelchair, you may be met by skepticism from medical staff and getting to hear it's counteractive to use a wheelchair. People saying such things clearly have no idea about how Ehlers-Danlos Syndrome works. For us, being conservative with our energy and relieving parts of our body often mean we can manage more. The one thing to remember though, is to still use your legs as much as you can as you don't want your muscles to atrophy on you. Don't get lazy just because you get a wheelchair!
When you're getting a wheelchair, it's important it is set up for your needs! Don't settle with one of those standard hospital chairs unless you're only going to use the wheelchair very little and/or always have someone pushing you in the wheelchair! But even if you have someone pushing you a lot of the time, you will still need a wheelchair that suits your needs for comfort and positioning, which again rules out a standard hospital wheelchair for most people.
So, how to pick YOUR wheelchair?
The most important thing when it comes to your wheelchair is its weight! You want a lightweight wheelchair, the lighter, the better! Especially if you intend to be independent in it and know you'll lift your chair in and out of the car independently as well.
The second most important decision you need to make is whether your wheelchair is going to have a rigid frame, or be a folding frame. Based on personal experience and reading, I'd highly suggest a rigid frame wheelchair unless you have to have a folding chair due to space issues in your home and car. A rigid frame wheelchair is generally more lightweight and sturdy than a folding frame and it's also more stable as you propel it. The more "stiff" a wheelchair is, the easier it is to propel and maneuver, it will literally follow the slightest touch of the push rims once you get the hang of it.
Footrests comes in different variations, and as with the actual frame, a rigid footrest will add more stiffness and stability to your chair and enhance its performance. If you absolutely need some kind of swing away footrest for transfers, many wheelchair manufacturers today offer a rigid footrest that can be folded up for transfers so you get the best of two worlds.
Taper or no taper? Taper means the wheelchair is more narrow at the foot plates, than up at seat level, having a wheelchair with a tapered front may be beneficial if you have a lot of hip pain and need help holding your legs together while sitting in the wheelchair, it also makes the chair a bit smaller and enhances maneuverability of the wheelchair.
Backrest comes in different variations as well. Go with what feels best for you, if you need a lot of positioning a rigid backrest may be the best choice for you even though it does add some more weight to the chair than a soft backrest does.
Accessories: DON'T GO THERE! Have as little extras on your wheelchair as you possibly can! The only accessories I'd highly recommend getting is side guards to protect your clothes from the wheels. And do get the anti-tip wheels at least to begin with, you don't want to flip over backwards. If you need push handles for a carer to push you, the flip down kind that's attached directly on the backrest of your wheelchair may be the most convenient compared to push handles that are fitted onto the chair with holders. But again, the less "crap" you put on your chair, the lighter it will be.
The push rims for your wheels is another very important choice you need to make. There's a wide range of different push rims available, aluminium, titanium, different diameter of the rims, with or without coating of rubber, plastic or color, ergonomic rims or just a round tube. There's a push rim for every need so choose wisely depending on your need and preference.
Cushion, another of the most important choices you need to make! There are so many different cushions on the market today. Air filled of different types, foam, honeycomb pattern, liquid/gel and so on. Don't just settle with a standard cushion if you have a lot of issues with pain and/or will be using your wheelchair for hours at a time. You need to sit comfortably, have proper positioning for your needs and even though us living with Ehlers-Danlos Syndrome aren't high risk for pressure sores like someone with paralysis, we still need to take good care of that bum and a good cushion will give you more time of being able to sit in your wheelchair before the pain gets to the level where you may need to go lie down. Which cushion is right for you is something you'll find through trial and error. I first had an air filled cushion with two chambers in it from Varilite, I now use a gel/liquid filled cushion called Jay Xtreme, and may ask my occupational therapist to get to try get another gel/liquid filled Jay cushion soon, or re-try another kind of air filled cushion that I did not like at all when I tried it the first time, but maybe I'll like it now? A gel/liquid filled cushion does weigh quite a bit more than an air filled or honeycomb pattern cushion. But don't let the weight of a cushion scare you off if you happen to find a heavier cushion to be the most comfortable for you. Sometimes comfort is worth a little extra weight!
How my wheelchair is set up?
Well, seeing my wheelchair is my first custom set up wheelchair, it is not exactly the way I want it as the occupational therapist who set me up with it had her own ideas about what was best for me, instead of listening to what I wanted. I have a lightweight active chair, and I do love it! But there are details on it that I will change when I eventually get a new wheelchair. I do not have a tapered wheelchair for example, not because I didn't want to have a tapered wheelchair but because the occupational therapist insisted I should have fold away footrests which at the time of my fitting wasn't available with tapered chairs and still isn't with the manufacturer that made my wheelchair. I have since had my footrests changed to a rigid footrest as I never folded up the footrests anyways and found that the fold away footrests wobbling under my feet as I was propelling myself or going over uneven ground. The rigid footrest is a lot better and also has my feet closer to the rest of my body, making my chair more compact and having my feet closer to me gives me a better position when propelling, enabling me to give a more effective push with less strain on my arms.
Initially I had push handles that were fitted with holders on the bar that's on the backrest of the wheelchair, but as I managed to be very independent in my wheelchair and never needed assistance, I had the push handles removed entirely after just a month, if I ever need help these days, I'll just have someone give me a slight push on the metal bar on the backrest. Not having push handles also shows people that I am independent and don't want them to push me around just because I'm in a wheelchair. Sometimes push handles can be seen as an invitation for someone to just push you around randomly and that can be extremely annoying if you haven't asked for someone to help you!
My backrest is a soft backrest with Velcro straps on the back so I can adjust the support in different parts of my back. The height of my backrest is about halfway up my back to offer good support and comfort.
When it comes to camber of the big wheels, I currently have a 4 degree camber making the base of my wheelchair a bit wider than it is up at seat level. I was told more camber would make the chair more maneuverable but I honestly don't know if it makes any difference other than size compared to having the (for my manufacturer) standard 2 degrees camber.
Initially I also had anti tip wheels as a lightweight active chair is very tippy until you get to know it! It didn't take long however until I had learned where all my sweet spots are and I no longer relied on having the anti tip wheels. I got my wheelchair in March last year, in July I no longer used the anti tip wheels (they were folded away under the chair) and by August I had them removed entirely. I've flipped over once since then, when attempting to jump up a curb that was too high and I had too little speed, but I knew in theory how to fall backwards so it was no biggie at all.
For push rims I have 19mm titanium without any coating on them, rubber or plastic coating can cause burns in your hands if you slow down while going down a slope and don't wear gloves. Seeing how my skin is very sensitive, I opted to go with a "burn safe alternative" so to say, and I went with a slightly bigger diameter of the rims than standard. Standard is 16mm but I felt that was too small, 19mm felt better in my hands and I like my push rim setup. I do well without having any grip improving coating on my push rims. I use leather gloves or work gloves at times when it's damp weather or cold and that works great!
The only accessory I currently have on my wheelchair is side guards to protect my clothes from the wheels.
For my next chair I will want the front to be tapered, partly to hold my hips together better and partly to make the chair even more easy to maneuver than my current chair and most likely I will go with just the standard camber rather than the 4 degrees I have now, I want my next wheelchair to be as small and light as possible, I will not have any anti tip wheels at all nor push handles as I don't need it, the footrest will of course be rigid on my next wheelchair as well. I may also opt for a slightly lower backrest than I have at the moment. The only accessory I'll have will be the side guards.
Weaning off the anti tip wheels:
I can not emphasize this enough, you WILL need anti tip wheels in the beginning! But try to not depend on them. Practice those wheelies until you can do it in your sleep and it becomes second nature for you to hold that wheelie. And practice curbs, both up and down. Just be careful trying going up high curbs, that's something I still haven't mastered even, see above where I mention my this far one and only flip backwards. Down a curb is easier as all you need to do really is go to the edge and go straight out landing on your back wheels or all four wheels. Once you've weaned off the anti tip wheels and go without, you'll find that your mobility improves more as anti tip wheels often get in the way when you need to jump up or down a curb, or "bunny hop" on your back wheels on terrain like grass.
To learn wheelies and how to hop curbs, I can highly recommend searching for videos on YouTube, there are many wheelchair users who share their tricks on there and it has helped me immensely!
Hope this post will help some fellow Ehlers-Danlos Syndrome fighters, and others who are about to get their first wheelchair. Sorry for it being a really long post, but it's a subject where you can't really take a whole lot of shortcuts. If you're in a country where you have to purchase your wheelchair out of pocket or with the help of your health insurance, it's even more important that you get a wheelchair that is right for you to begin with. Where I am, all I need to do is calling my occupational therapist and say that I feel I need a different setup wheelchair and I could get to change it completely as I do not own my wheelchair, it's owned by my region and costs me nothing. If I need to change wheelchair for one reason or another before the current chair is worn out, my current chair would just be set up for another patient once returned to the wheelchair center when I have gotten the new wheelchair. But unless I desperately need a tapered front, I'll just stick to this wheelchair as I do love it!
When walking gets tough, you just gotta keep rolling!
For many, getting a wheelchair is a big thing, and many see it as a failure, as if you're giving up.
Getting a wheelchair is NOT a failure! Getting a wheelchair is a way for you to fight back against your condition, a way to get out of your house more, a way to participate in more activities that you've had to skip due to it requiring more standing and walking than you can handle, and it's also likely you'll suffer less pain afterwards in a wheelchair than on your feet. Now, how's that failure?
I have had my wheelchair for over a year now and I use it as soon as I go out of my apartment which is almost every day. Thanks to my wheelchair I'm able to go places independently, I can go to the supermarket on my own without relying on the car unless I need to buy more than a backpack can hold, I'm participating in social activities both in and out of town, I can be a bit more spontaneous and just go to a mall or something whenever I feel up for it as I don't need to worry about whether there will be places to rest or not, I have my own comfy seat under my bum already! And in fact, since my wheelchair is set up just for me, it's the only upright chair I can sit in for a somewhat decent amount of time without getting too much pain.
So, I've had my wheelchair for little over a year, and while I obviously don't have the same wealth of experience as someone who's been a chair user for many years, I do have a fair bit of experience by now and I try to keep up with the current models and development when it comes to wheelchairs and the all important accessory for it: the cushion.
Getting a wheelchair with Ehlers-Danlos Syndrome can be a bit special as we have our loose joints to keep in mind as well, both here and now and down the road. Some people with Ehlers-Danlos Syndrome manage just fine in a manual wheelchair for a long time, others may need electric assisted wheels instantly or a short while after getting their wheelchair as self propelling may be too rough on shoulders, wrists and hands. I belong to the group of people doing fine with a fully manual wheelchair and that despite my shoulders subluxing at times just by moving my arm the wrong way, and I'm completely independent in my wheelchair as long as the terrain isn't too rough, or a slope or ramp is too steep.
When you first request a wheelchair, you may be met by skepticism from medical staff and getting to hear it's counteractive to use a wheelchair. People saying such things clearly have no idea about how Ehlers-Danlos Syndrome works. For us, being conservative with our energy and relieving parts of our body often mean we can manage more. The one thing to remember though, is to still use your legs as much as you can as you don't want your muscles to atrophy on you. Don't get lazy just because you get a wheelchair!
When you're getting a wheelchair, it's important it is set up for your needs! Don't settle with one of those standard hospital chairs unless you're only going to use the wheelchair very little and/or always have someone pushing you in the wheelchair! But even if you have someone pushing you a lot of the time, you will still need a wheelchair that suits your needs for comfort and positioning, which again rules out a standard hospital wheelchair for most people.
So, how to pick YOUR wheelchair?
The most important thing when it comes to your wheelchair is its weight! You want a lightweight wheelchair, the lighter, the better! Especially if you intend to be independent in it and know you'll lift your chair in and out of the car independently as well.
The second most important decision you need to make is whether your wheelchair is going to have a rigid frame, or be a folding frame. Based on personal experience and reading, I'd highly suggest a rigid frame wheelchair unless you have to have a folding chair due to space issues in your home and car. A rigid frame wheelchair is generally more lightweight and sturdy than a folding frame and it's also more stable as you propel it. The more "stiff" a wheelchair is, the easier it is to propel and maneuver, it will literally follow the slightest touch of the push rims once you get the hang of it.
Footrests comes in different variations, and as with the actual frame, a rigid footrest will add more stiffness and stability to your chair and enhance its performance. If you absolutely need some kind of swing away footrest for transfers, many wheelchair manufacturers today offer a rigid footrest that can be folded up for transfers so you get the best of two worlds.
Taper or no taper? Taper means the wheelchair is more narrow at the foot plates, than up at seat level, having a wheelchair with a tapered front may be beneficial if you have a lot of hip pain and need help holding your legs together while sitting in the wheelchair, it also makes the chair a bit smaller and enhances maneuverability of the wheelchair.
Backrest comes in different variations as well. Go with what feels best for you, if you need a lot of positioning a rigid backrest may be the best choice for you even though it does add some more weight to the chair than a soft backrest does.
Accessories: DON'T GO THERE! Have as little extras on your wheelchair as you possibly can! The only accessories I'd highly recommend getting is side guards to protect your clothes from the wheels. And do get the anti-tip wheels at least to begin with, you don't want to flip over backwards. If you need push handles for a carer to push you, the flip down kind that's attached directly on the backrest of your wheelchair may be the most convenient compared to push handles that are fitted onto the chair with holders. But again, the less "crap" you put on your chair, the lighter it will be.
The push rims for your wheels is another very important choice you need to make. There's a wide range of different push rims available, aluminium, titanium, different diameter of the rims, with or without coating of rubber, plastic or color, ergonomic rims or just a round tube. There's a push rim for every need so choose wisely depending on your need and preference.
Cushion, another of the most important choices you need to make! There are so many different cushions on the market today. Air filled of different types, foam, honeycomb pattern, liquid/gel and so on. Don't just settle with a standard cushion if you have a lot of issues with pain and/or will be using your wheelchair for hours at a time. You need to sit comfortably, have proper positioning for your needs and even though us living with Ehlers-Danlos Syndrome aren't high risk for pressure sores like someone with paralysis, we still need to take good care of that bum and a good cushion will give you more time of being able to sit in your wheelchair before the pain gets to the level where you may need to go lie down. Which cushion is right for you is something you'll find through trial and error. I first had an air filled cushion with two chambers in it from Varilite, I now use a gel/liquid filled cushion called Jay Xtreme, and may ask my occupational therapist to get to try get another gel/liquid filled Jay cushion soon, or re-try another kind of air filled cushion that I did not like at all when I tried it the first time, but maybe I'll like it now? A gel/liquid filled cushion does weigh quite a bit more than an air filled or honeycomb pattern cushion. But don't let the weight of a cushion scare you off if you happen to find a heavier cushion to be the most comfortable for you. Sometimes comfort is worth a little extra weight!
How my wheelchair is set up?
Well, seeing my wheelchair is my first custom set up wheelchair, it is not exactly the way I want it as the occupational therapist who set me up with it had her own ideas about what was best for me, instead of listening to what I wanted. I have a lightweight active chair, and I do love it! But there are details on it that I will change when I eventually get a new wheelchair. I do not have a tapered wheelchair for example, not because I didn't want to have a tapered wheelchair but because the occupational therapist insisted I should have fold away footrests which at the time of my fitting wasn't available with tapered chairs and still isn't with the manufacturer that made my wheelchair. I have since had my footrests changed to a rigid footrest as I never folded up the footrests anyways and found that the fold away footrests wobbling under my feet as I was propelling myself or going over uneven ground. The rigid footrest is a lot better and also has my feet closer to the rest of my body, making my chair more compact and having my feet closer to me gives me a better position when propelling, enabling me to give a more effective push with less strain on my arms.
Initially I had push handles that were fitted with holders on the bar that's on the backrest of the wheelchair, but as I managed to be very independent in my wheelchair and never needed assistance, I had the push handles removed entirely after just a month, if I ever need help these days, I'll just have someone give me a slight push on the metal bar on the backrest. Not having push handles also shows people that I am independent and don't want them to push me around just because I'm in a wheelchair. Sometimes push handles can be seen as an invitation for someone to just push you around randomly and that can be extremely annoying if you haven't asked for someone to help you!
My backrest is a soft backrest with Velcro straps on the back so I can adjust the support in different parts of my back. The height of my backrest is about halfway up my back to offer good support and comfort.
When it comes to camber of the big wheels, I currently have a 4 degree camber making the base of my wheelchair a bit wider than it is up at seat level. I was told more camber would make the chair more maneuverable but I honestly don't know if it makes any difference other than size compared to having the (for my manufacturer) standard 2 degrees camber.
Initially I also had anti tip wheels as a lightweight active chair is very tippy until you get to know it! It didn't take long however until I had learned where all my sweet spots are and I no longer relied on having the anti tip wheels. I got my wheelchair in March last year, in July I no longer used the anti tip wheels (they were folded away under the chair) and by August I had them removed entirely. I've flipped over once since then, when attempting to jump up a curb that was too high and I had too little speed, but I knew in theory how to fall backwards so it was no biggie at all.
For push rims I have 19mm titanium without any coating on them, rubber or plastic coating can cause burns in your hands if you slow down while going down a slope and don't wear gloves. Seeing how my skin is very sensitive, I opted to go with a "burn safe alternative" so to say, and I went with a slightly bigger diameter of the rims than standard. Standard is 16mm but I felt that was too small, 19mm felt better in my hands and I like my push rim setup. I do well without having any grip improving coating on my push rims. I use leather gloves or work gloves at times when it's damp weather or cold and that works great!
The only accessory I currently have on my wheelchair is side guards to protect my clothes from the wheels.
For my next chair I will want the front to be tapered, partly to hold my hips together better and partly to make the chair even more easy to maneuver than my current chair and most likely I will go with just the standard camber rather than the 4 degrees I have now, I want my next wheelchair to be as small and light as possible, I will not have any anti tip wheels at all nor push handles as I don't need it, the footrest will of course be rigid on my next wheelchair as well. I may also opt for a slightly lower backrest than I have at the moment. The only accessory I'll have will be the side guards.
Weaning off the anti tip wheels:
I can not emphasize this enough, you WILL need anti tip wheels in the beginning! But try to not depend on them. Practice those wheelies until you can do it in your sleep and it becomes second nature for you to hold that wheelie. And practice curbs, both up and down. Just be careful trying going up high curbs, that's something I still haven't mastered even, see above where I mention my this far one and only flip backwards. Down a curb is easier as all you need to do really is go to the edge and go straight out landing on your back wheels or all four wheels. Once you've weaned off the anti tip wheels and go without, you'll find that your mobility improves more as anti tip wheels often get in the way when you need to jump up or down a curb, or "bunny hop" on your back wheels on terrain like grass.
To learn wheelies and how to hop curbs, I can highly recommend searching for videos on YouTube, there are many wheelchair users who share their tricks on there and it has helped me immensely!
Hope this post will help some fellow Ehlers-Danlos Syndrome fighters, and others who are about to get their first wheelchair. Sorry for it being a really long post, but it's a subject where you can't really take a whole lot of shortcuts. If you're in a country where you have to purchase your wheelchair out of pocket or with the help of your health insurance, it's even more important that you get a wheelchair that is right for you to begin with. Where I am, all I need to do is calling my occupational therapist and say that I feel I need a different setup wheelchair and I could get to change it completely as I do not own my wheelchair, it's owned by my region and costs me nothing. If I need to change wheelchair for one reason or another before the current chair is worn out, my current chair would just be set up for another patient once returned to the wheelchair center when I have gotten the new wheelchair. But unless I desperately need a tapered front, I'll just stick to this wheelchair as I do love it!
When walking gets tough, you just gotta keep rolling!
Tuesday, May 6, 2014
Oh the ups and downs and accessible towns.
Yesterday I had a pretty nasty day. I woke up in a severe pain flare which nearly landed me in the ER due to the pain level. My hips felt like someone had hit them repeatedly with a baseball bat, my SI joints felt like someone was trying to take them apart with a crowbar, my knees had a kind of grinding pain in them, my neck was (and in a way still is) throwing a hissy fit and I had a spinal headache from my neck. Needless to say, I was in agony and I stayed in bed pretty much all day!
Seeing how I had big plans for today, I was pretty worried yesterday. I would have absolutely hated to have to cancel plans again, especially since it was an activity I had really been looking forward to!
Fortunately, this morning when I woke up, my pain level had eased enough so I felt well enough to drive and go to the event I had planned going to. I knew going would take a lot from me physically as it meant a 100 mile round trip, this time completely on my own, but at the same time, I've always loved driving, especially longer distances! I truly miss being able zooming mile after mile after mile like I used to. Driving today causes so much pain, much due to me driving a car that doesn't suit my needs. I drive a stick shift car without cruise control, but really should be driving an automatic car with cruise control, or even a handicap adapted car where you can drive either with feet or with hand controls, and of course with cruise control. Hopefully one day I'll have a car that fits my needs, either my own, or share with my parents- it's their stick shift car that I currently drive when I need to drive.
Anyways, I love driving! It's such a freedom to get behind the wheel and just go somewhere, see the landscape zoom past outside, see cars and trucks from different countries, see towns flash by as you drive through them, all while listening to some good radio station pretty loudly!
Today's freedom venture out of town was to attend a meeting, a meeting with a newly started political party aiming to improve the accessibility in Gothenburg to begin with, hopefully they'll go national as well. It's such a great initiative, just sad that it's needed. Even though I live out of town from where they're active now, I'll do ALL I can to help out in every way I can and attend as many meetings and events as my body can handle! Awareness and accessibility is something I have a passion for, it's so important, but often forgotten by the people who live a healthy and unlimited life.
People living with a condition or disability have to fight to be seen, to be heard and to get around! It's 2014 now, the days of putting disabled people in institutions are long gone, yet the public space outside isn't adapted to get around in. People living with a disability are frequently discriminated against by cities placing high curbs, cobble stones instead of smooth surfaces, no ramps or too steep ramps, no elevator (or a long detour to get to one- and you wonder why some wheelchair users simply use the escalator?)
We're constantly facing obstacles when out and about. All we want is independence and to get around like everyone else, use the same entrance like everyone else, be able to use public transportation without having to ask for assistance etc.
I'm really glad my Ehlers-Danlos decided to behave well enough today for me to attend this meeting in Gothenburg. I met some truly awesome people and I can't wait to see them all again!
I feel very motivated now! I have my local battle in town for better accessibility, and I'm definitely going to be in Gothenburg as much as I possibly can for events for accessibility!
I can always get out of my wheelchair to walk past an obstacle, but it shouldn't be needed! And I fight for those who can't get out of their wheelchairs to walk past an obstacle! My friend who started this political party and hosted the meeting today, is a paraplegic, he can't just stand up from his wheelchair and walk past an obstacle, his legs doesn't work at all!
Everything that helps someone in a wheelchair, makes life easier for EVERYONE else!
Seeing how I had big plans for today, I was pretty worried yesterday. I would have absolutely hated to have to cancel plans again, especially since it was an activity I had really been looking forward to!
Fortunately, this morning when I woke up, my pain level had eased enough so I felt well enough to drive and go to the event I had planned going to. I knew going would take a lot from me physically as it meant a 100 mile round trip, this time completely on my own, but at the same time, I've always loved driving, especially longer distances! I truly miss being able zooming mile after mile after mile like I used to. Driving today causes so much pain, much due to me driving a car that doesn't suit my needs. I drive a stick shift car without cruise control, but really should be driving an automatic car with cruise control, or even a handicap adapted car where you can drive either with feet or with hand controls, and of course with cruise control. Hopefully one day I'll have a car that fits my needs, either my own, or share with my parents- it's their stick shift car that I currently drive when I need to drive.
Anyways, I love driving! It's such a freedom to get behind the wheel and just go somewhere, see the landscape zoom past outside, see cars and trucks from different countries, see towns flash by as you drive through them, all while listening to some good radio station pretty loudly!
Today's freedom venture out of town was to attend a meeting, a meeting with a newly started political party aiming to improve the accessibility in Gothenburg to begin with, hopefully they'll go national as well. It's such a great initiative, just sad that it's needed. Even though I live out of town from where they're active now, I'll do ALL I can to help out in every way I can and attend as many meetings and events as my body can handle! Awareness and accessibility is something I have a passion for, it's so important, but often forgotten by the people who live a healthy and unlimited life.
People living with a condition or disability have to fight to be seen, to be heard and to get around! It's 2014 now, the days of putting disabled people in institutions are long gone, yet the public space outside isn't adapted to get around in. People living with a disability are frequently discriminated against by cities placing high curbs, cobble stones instead of smooth surfaces, no ramps or too steep ramps, no elevator (or a long detour to get to one- and you wonder why some wheelchair users simply use the escalator?)
We're constantly facing obstacles when out and about. All we want is independence and to get around like everyone else, use the same entrance like everyone else, be able to use public transportation without having to ask for assistance etc.
I'm really glad my Ehlers-Danlos decided to behave well enough today for me to attend this meeting in Gothenburg. I met some truly awesome people and I can't wait to see them all again!
I feel very motivated now! I have my local battle in town for better accessibility, and I'm definitely going to be in Gothenburg as much as I possibly can for events for accessibility!
I can always get out of my wheelchair to walk past an obstacle, but it shouldn't be needed! And I fight for those who can't get out of their wheelchairs to walk past an obstacle! My friend who started this political party and hosted the meeting today, is a paraplegic, he can't just stand up from his wheelchair and walk past an obstacle, his legs doesn't work at all!
Everything that helps someone in a wheelchair, makes life easier for EVERYONE else!
Monday, May 5, 2014
Ehlers-Danlos Syndrome, what is it?
In light of May being Ehlers-Danlos Syndrome Awareness month, I shall be sharing some information about the syndrome in some different posts throughout the month. I took most of this post from another blog that I'm running, just to save some time as I saw no reason to write the same thing twice.
Ehlers-Danlos Syndrome, often simply referred to as EDS is a genetic connective tissue disorder where one or more types of collagen is affected. There are different types of Ehlers-Danlos Syndrome: Classical, Hypermobility, Vascular, Kyphoscoliosis, Arthrochalasia and Dermatosparaxis.
Hypermobility type is the most common type, followed by Classical type. Vascular Ehlers-Danlos Syndrome is considered the most severe out of the "common" types of Ehlers-Danlos Syndrome and that's due to the weakening of blood vessels and organs that increases the risk for aneurysms and dissection.
Kyphoscoliosis, Arthrochalasia and Dermatosparaxis type are all very rare, between them all there may be as few as 100 cases confirmed.
Symptoms of Ehlers-Danlos Syndrome ranges from mild to severe and it isn't uncommon to have crossover symptoms from another type. The wise are still arguing whether you can have only one type of Ehlers-Danlos Syndrome or if you can indeed have more than one type. I personally prefer to say someone has one type, with crossover symptoms of another type, but I am no doctor.
The hallmark of any type of Ehlers-Danlos Syndrome is joints that can move beyond normal range of motion, and some kind of skin involvement, the most known being hyperelastic skin. Skin involvement also includes velvety soft skin, a doughy feeling, too much skin, abnormal scarring, striae and translucent skin. You can have one or more of the skin symptoms.
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| Example of joint hypermobility that I have |
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| Example of scarring and striae on my shoulder area |
Ehlers-Danlos Syndrome also causes a lot of pain for many patients, often both chronic and acute pain and it may be very complex to treat as it's not uncommon to be either very sensitive or resistant to medicines. It is sadly all too common that doctors don't understand the pain, and as it for the most part can not be seen on imaging, patients are often labelled as drug seekers or have their pain labelled as psychological when it's very much physical. It can take a long time to find a doctor who understands the complexity and to get a good pain management.
Ehlers-Danlos is so much more than skin and joints though, you may also have some form of dysautonomia, Chiari malformation, Cervical instability, pelvic floor prolapse, IBS, heart problems (mostly mitral valve prolapse) or early onset arthritis for example.
You are born with Ehlers-Danlos Syndrome but for some, symptoms don't develop until later in life, or the symptoms are so mild in childhood that you mistake them for something else, like claiming the pain is just growing pain, it's also common that people get misdiagnosed with Fibromyalgia when they do in fact have Ehlers-Danlos Syndrome.
If you suspect you or a loved one may have Ehlers-Danlos Syndrome, talking with your doctor is the first step to make. Depending on your location, where and by whom you're diagnosed may vary.
Pages to learn more about Ehlers Danlos Syndrome:
http://ednf.org/
http://hypermobility.org/
Friday, May 2, 2014
Ehlers-Danlos Syndrome Awareness Month
Today is May First! Or well, it's already past midnight here as I'm typing this, but matters less!
May First marks the start of Ehlers-Danlos Syndrome Awareness month, a month where us living with Ehlers-Danlos Syndrome do as much as we can to spread awareness and knowledge about our relatively rare genetic condition! Now we do like to spread awareness all year, but May is extra special to us.
Now I do blog a fair bit about Ehlers-Danlos and how it affects me normally as well, but now in May I shall try to do it even more, and I may even try to put together some YouTube video about it. I used to have some videos up on my YouTube channel but recently made them private due to them not having the best quality and they were recorded directly on YouTube so no editing or anything was done. Think I shall attempt to make an EDS awareness video combining both photo and video and edit it in Movie Maker before uploading so it looks more neat and has a better flow to it, I may try some vlogs again as well, but I'm pretty camera shy and with my brain being the way it is...
May First marks the start of Ehlers-Danlos Syndrome Awareness month, a month where us living with Ehlers-Danlos Syndrome do as much as we can to spread awareness and knowledge about our relatively rare genetic condition! Now we do like to spread awareness all year, but May is extra special to us.
Now I do blog a fair bit about Ehlers-Danlos and how it affects me normally as well, but now in May I shall try to do it even more, and I may even try to put together some YouTube video about it. I used to have some videos up on my YouTube channel but recently made them private due to them not having the best quality and they were recorded directly on YouTube so no editing or anything was done. Think I shall attempt to make an EDS awareness video combining both photo and video and edit it in Movie Maker before uploading so it looks more neat and has a better flow to it, I may try some vlogs again as well, but I'm pretty camera shy and with my brain being the way it is...
So you can imagine trying to record a vlog and staying on subject throughout the whole video... I also feel really awkward talking "to myself" on camera. But I'll try! It's for the greater good and if it can educate people about Ehlers-Danlos Syndrome, maybe help someone currently who's running rampant without a diagnose, it's all worth the awkwardness!
Seeing how I have been feeling a bit better lately despite my pretty severe pollen allergy and a pollen season from hell, I don't look too bad at the moment so yeah, videos may be coming soon!
I'm also beginning to suspect that I may have some kind of cortisone deficiency in my body. I'm going to discuss that with my doctor ASAP as I started to feel better the same moment I added the Betamethasone tablets for my allergy a couple of weeks ago. This pollen season has really been...
So I haven't been allergy symptom free even with the Betamethasone, but even WITH allergy symptoms still (though they've been kept at manageable levels with all my medicines) I have been feeling a whole lot better in general than I do on your average random Thursday anytime of the year when I'm not taking any Betamethasone.
I've also gotten a bit more normal appetite compared to my usual barely wanting to touch food kind of appetite, and the pair of jeans that I bought on Good Friday are already like a size too big and I normally stay the same when it comes to size, possibly due to my body often being in starvation mode when my appetite is very low, and hence storing all the nutrition that it does get.
It's just a theory, but I am definitely willing to try it out for an extended period of time, especially since we're talking really low doses of Betamethasone. My sweet spot seem to be as little as 1mg twice daily or 1.5mg twice daily, so yeah, 2-3mg per day! It's such a low dose that it doesn't really even pose any risks when it comes to your body's own production of cortisone.
I know taking any kind of steroids is bad for connective tissue though, but again, it's such a low dose so it shouldn't be a problem, and if it does work out and giving me more energy and a more normal appetite, the benefits definitely outweighs any possible risks! I really could do with weight loss for my long term health (at this time, I have no health issues at all that can be blamed on my weight) and having a bit more energy to do things is never a bad thing! It's not a cure, but yeah, just being able to get on with my day a little better, being a little bit more spontaneous with activities and being able to drive a bit more again, to me those little things are just utterly amazing!
I have been doing more in the past couple of weeks alone, than I'd normally manage in a month or two, plus that I've been driving more in just one week, than I've done in a 3 month period lately. If 2-3mg of Betamethasone per day is giving me all these benefits, then being on that medicine is the right thing for me and I will fight for it if I have to!
On a completely different note before I finish this blog post.
My blog has reached over 10,000 hits! Thank you so much everyone who's reading this and reading my posts! When I first started this blog some years ago, I could have never imagined it would ever reach 10,000 hits! But the number definitely keeps me motivated to continue writing as often as I have something to write.
This shall be celebrated with a short clip of the fireworks that were displayed at the spring celebrations I attended yesterday (April 30th).
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