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We need to get this Group Going
I know how hard it is having a chronic disease...Everyone is struggling...Please any suggestions to help this group get going again would be appreciated...I have nothing to add at the moment...
Huggles to you all and I pray you have a painless and a Happy Summer.
Huggles to you all and I pray you have a painless and a Happy Summer.
Been gone for a while
Hi everone. I haven't been on this site for a long time. I have fibromyalgia,CFS, RLS, IBS,Short bowel, decubidus ulcers(?), Prothrombin mutation 2, lol, it causes bloodclots. I had a major one in my abdomen already, copd, asthma, clinical depression, I'm OCD. I tend to isolate. I live in a downstairs apartment that the Dr.s I see tell me theres mold or something I have an allergy to as I've been sick since I moved in to it in July 2011. I have no place to go and No one to move me so I'm just stuck down here. I can't hardly breath. I cough all the time. I'm on Oxygen and a cpap at night. If I forget to use them my 02 sats go down to 70. If I use just the cpap It stays up in the 80's.It's really hard the next day if I fell asleep and forgot to put them on. Other than that.........I'm GOOD LOL!
"Husband #3
Sorry to inform you that my sweet wife Darla passed on June 13, 2008 from acute leukemia. She died at home as she wished, and painlessly, thank God.
I just found this site in her 'password' book tonight, January 10, 2011.
She said her first marriage resulted in a great son, her second a great daughter, and her third marriage a great husband, (me). Nice, huh?. I didn't know how much I loved her until she was gone.
I am moving on with my life, as she directed, but I think of her now and then with feelings of great loss.
God bless and keep you all, friends of Darla and the many others who read her profile, from Stephen (Husband #3)
I just found this site in her 'password' book tonight, January 10, 2011.
She said her first marriage resulted in a great son, her second a great daughter, and her third marriage a great husband, (me). Nice, huh?. I didn't know how much I loved her until she was gone.
I am moving on with my life, as she directed, but I think of her now and then with feelings of great loss.
God bless and keep you all, friends of Darla and the many others who read her profile, from Stephen (Husband #3)
Trouble Accessing Handicapped Parking?
Take action now! The deadline is November 25, 2011 to obtain 25,000 signatures:
Are you fed-up with Handicapped Parking abuse? I am severely mobility impaired, use a power wheelchair, and have published A PETITION TO THE WHITE HOUSE asking for an Executive Order to reform handicapped parking regulations and enforcement, and need your signatures and help getting the word out. This a new feature offered called "We the People/White House," where anyone can create a petition of major concern, spread the word about your cause, and gather a minimum of 25,000 signatures of support within 30 days. (I hope to get 250,000 in 30 days!) You can sign the petition at: view link
Are you fed-up with Handicapped Parking abuse? I am severely mobility impaired, use a power wheelchair, and have published A PETITION TO THE WHITE HOUSE asking for an Executive Order to reform handicapped parking regulations and enforcement, and need your signatures and help getting the word out. This a new feature offered called "We the People/White House," where anyone can create a petition of major concern, spread the word about your cause, and gather a minimum of 25,000 signatures of support within 30 days. (I hope to get 250,000 in 30 days!) You can sign the petition at: view link
What works to ease your pain?
Hi All: I have Fibromyalgia, Osteoarthritis (w/bone spurs in both knees, plus lower back non-stop excruciating pain), IBS, and I need to lose 120 pounds. NSAIDS have proven useless, pain pills would be addictive; so I don't take either of those. My pain at level 7 on a good day, is usually at 9 or 10, 0n the scale of 1 to 10! I have been treated over the years with antidepressants: Zoloft, Elavil, used to take Gabapentin but requested change because of too much "fog" (I believe sedated more than necessary), now Lyrica, and Arthritis Strength Acetimeniphen. I have 2 jumbo heating pads which I alternate using 24-7 at high setting for my back pain because its the only thing that gives comfort. The heating pads used at that rate have to be replaced every four months. Hot showers feel great, and a heated swimming pool is the only way I can exercise safely. Oh I hope one day to have a house with a jacuzzi! So let's talk about what helps you?
WHEELCHAIR LESSONS ANYONE
Dear fellow suffers, hope you never buy a wheelchair like this.
This is an open letter to whoever would like to read it. I will give you a brief history of what is leading up to people coming into my home to teach me how to use an electric wheelchair. It isn’t even my first wheelchair, but I believe the person who designed it must have had an IQ of under 50.
I receive my chair on August 16, 2010 and the first repair technician showed up on 8/18/2010 trying to adjust my front wheels so that it would not get caught in door jams, and go over the small thresh holds one has in old home, one that are not even a half an inch high.
They have loosened shocks, put an universal fork conversion kit on it tried many other things on my Jazzy modle 614 designed by Pride and sold by the scooter store. I have been yelled at, told I would just have to get used to the chair because there is nothing that anyone can do to fix it. This went on in a time span of a little over three months time.
Now a little explanation of the design of the chair. It has six wheels, 4 caster wheels about six inches in diameter and one large wheel centered between the caster wheels. The caster wheels along with the big wheel all go a round like your car wheels, However the caster wheels go in a circle like that of a marry-go-round. The foot pad is even indented to allow for the front wheel to turn in a circle like a toy top. Now if you can picture those kind of wheels on your car and imagine where you would end up, or if you would still be alive, than you can imagine some of the difficulties I have had.
I have been stuck in door frames, fallen when trying to get up while stuck in the frame, knocking myself out because my knee wouldn’t hold me. (One of the reasons I need the chair for). I have been hanging with the front right corner off the ramp and the highest point, because the right front wheel decided to turn right. It was only quick thinking and the fact that I had family here to get me out of the chair before it fell of the ramp. The last thing that happened in this torture chamber the chair I have named the Albatross my chair was getting stuck between the door frame and I didn’t realize that my foot was not all the way on the pad. If a 250# chair, a door frame and a foot get into an argument the foot looses, and boy did mine loose. I have stitches, bruises and extreme pain up my entire leg,kind of like an according effect, and a know of my head has a know on it the size of a golf ball.
I don’t know which phone call i placed or person I have complained to got the attention of the scooter store, but they are now sending someone one to teach me how to use my scooter. To see if they can convice me that this is all my fault. Perhaps because it ate my dress, or if I could wear shoes all the time, (at times even having bedcovers touch my skins causes me extreme pain. Another of the many weird medical problems I don’t want to go into.) But I have decided to have the day the Scooter store comes and shows me how to use my chair a day to thanksgiving after all, it isn’t every day you get a call from a vice president of a smooozze to send some one here to help me use this chair so I can get out and walk my provider dog, or get to the car so I can go to a doctor. Even if she tells me it is not the scooter stores responsibility on how the chair handles outside of the house.
So all you great people, please say a prayer if you believe in prayer, or just read my story and I will let you know, how come a person with an IQ of 168, and one who has never been injured by my freedom mobile that I had for over five year, needs to have a technician come and teach me how to drive a wheelchair.
This is an open letter to whoever would like to read it. I will give you a brief history of what is leading up to people coming into my home to teach me how to use an electric wheelchair. It isn’t even my first wheelchair, but I believe the person who designed it must have had an IQ of under 50.
I receive my chair on August 16, 2010 and the first repair technician showed up on 8/18/2010 trying to adjust my front wheels so that it would not get caught in door jams, and go over the small thresh holds one has in old home, one that are not even a half an inch high.
They have loosened shocks, put an universal fork conversion kit on it tried many other things on my Jazzy modle 614 designed by Pride and sold by the scooter store. I have been yelled at, told I would just have to get used to the chair because there is nothing that anyone can do to fix it. This went on in a time span of a little over three months time.
Now a little explanation of the design of the chair. It has six wheels, 4 caster wheels about six inches in diameter and one large wheel centered between the caster wheels. The caster wheels along with the big wheel all go a round like your car wheels, However the caster wheels go in a circle like that of a marry-go-round. The foot pad is even indented to allow for the front wheel to turn in a circle like a toy top. Now if you can picture those kind of wheels on your car and imagine where you would end up, or if you would still be alive, than you can imagine some of the difficulties I have had.
I have been stuck in door frames, fallen when trying to get up while stuck in the frame, knocking myself out because my knee wouldn’t hold me. (One of the reasons I need the chair for). I have been hanging with the front right corner off the ramp and the highest point, because the right front wheel decided to turn right. It was only quick thinking and the fact that I had family here to get me out of the chair before it fell of the ramp. The last thing that happened in this torture chamber the chair I have named the Albatross my chair was getting stuck between the door frame and I didn’t realize that my foot was not all the way on the pad. If a 250# chair, a door frame and a foot get into an argument the foot looses, and boy did mine loose. I have stitches, bruises and extreme pain up my entire leg,kind of like an according effect, and a know of my head has a know on it the size of a golf ball.
I don’t know which phone call i placed or person I have complained to got the attention of the scooter store, but they are now sending someone one to teach me how to use my scooter. To see if they can convice me that this is all my fault. Perhaps because it ate my dress, or if I could wear shoes all the time, (at times even having bedcovers touch my skins causes me extreme pain. Another of the many weird medical problems I don’t want to go into.) But I have decided to have the day the Scooter store comes and shows me how to use my chair a day to thanksgiving after all, it isn’t every day you get a call from a vice president of a smooozze to send some one here to help me use this chair so I can get out and walk my provider dog, or get to the car so I can go to a doctor. Even if she tells me it is not the scooter stores responsibility on how the chair handles outside of the house.
So all you great people, please say a prayer if you believe in prayer, or just read my story and I will let you know, how come a person with an IQ of 168, and one who has never been injured by my freedom mobile that I had for over five year, needs to have a technician come and teach me how to drive a wheelchair.
I'm New Here
Hi
I thought I would let you know Just a bit about what's going on with me Health wise.. In 2007 I was diagnosed with Sjogren's Syndrome (Autoimmune Disease), Chronic Fatigue Syndrome, Osteoarthritis & Depression. 2008 I was diagnosed with Fibromyalgia and Closed Angle Glaucoma Which I had laser surgery for and now that is ok.. In the last 12 months I have started having Migraine's I was told the are possibly connected to the Fibromyalgia.. My most recent medical issue is I have the start of Cataracts, I could go on but this is enough I think for now. I have been off work now since 2007. I was approved for Gov Disability in 2010 One thing about all of this, each day brings something different, life is far from boring lol.
I thought I would let you know Just a bit about what's going on with me Health wise.. In 2007 I was diagnosed with Sjogren's Syndrome (Autoimmune Disease), Chronic Fatigue Syndrome, Osteoarthritis & Depression. 2008 I was diagnosed with Fibromyalgia and Closed Angle Glaucoma Which I had laser surgery for and now that is ok.. In the last 12 months I have started having Migraine's I was told the are possibly connected to the Fibromyalgia.. My most recent medical issue is I have the start of Cataracts, I could go on but this is enough I think for now. I have been off work now since 2007. I was approved for Gov Disability in 2010 One thing about all of this, each day brings something different, life is far from boring lol.
Thank You
Thank you so much for adding me to the group. I'm looking forward to contributing and getting to know others in the same situation.
Hugs.
ChronicCrone
Hugs.
ChronicCrone
nATION INJURY INFORMATION CLEARING HOUSE NOTICES
An amazing thing happened today. When I got my mail I had a letter from the U.S. Consumer Product Safety commission
National injury information clearing houses.
I guess all the writing and complaining to Medicare and the scooter store has caught the attention of a service of the government that can actually help with this problem. I know that I can’t be the only one having difficulties with this chair so if any of you know of anyone with this chair and experiencing problems with a wheel chair let me know. People in numbers get more done than one alone.
I want to thank all of you for reading and commenting on my writing. Your feed back is invaluable to me in so many ways. I have been so very depressed and thinking that I would be stuck with this chair that has caused me some major damage to my body, and I still have not healed from the cut between my toe, so my doctor will see what she can do to it to see if she can get the pain level back down to a tolerable level.
I also wanted you all to know that the field tech sent by scooter store came last Wed. 12/1/2010 he use a devise to adjust the power on the motors it is called a calaberator. I had asked them to bring it the first time they came out, but I was told that I didn’t really understand how these chairs works. He seen me drive it and said he couldn’t figure how it would get stuck in the door frame, except that the floor is a little uneven in some levels. They didn’t have a comment when I mentioned that my Freedom Mobile had no problems getting through the doors without getting hung up. The vice president called me the next day and said that there was nothing more that can be done to fix my chair. I asked about a bigger foot pad as only a small part of my foot can be placed on the pad, and it catches the outside of my foot, and at the present I have to large sores where the wheels scrapped my foot. She said if I wanted to pay the $350 they would be happy to put it on. If I had that kind of money I would make faces at her. LOL
National injury information clearing houses.
I guess all the writing and complaining to Medicare and the scooter store has caught the attention of a service of the government that can actually help with this problem. I know that I can’t be the only one having difficulties with this chair so if any of you know of anyone with this chair and experiencing problems with a wheel chair let me know. People in numbers get more done than one alone.
I want to thank all of you for reading and commenting on my writing. Your feed back is invaluable to me in so many ways. I have been so very depressed and thinking that I would be stuck with this chair that has caused me some major damage to my body, and I still have not healed from the cut between my toe, so my doctor will see what she can do to it to see if she can get the pain level back down to a tolerable level.
I also wanted you all to know that the field tech sent by scooter store came last Wed. 12/1/2010 he use a devise to adjust the power on the motors it is called a calaberator. I had asked them to bring it the first time they came out, but I was told that I didn’t really understand how these chairs works. He seen me drive it and said he couldn’t figure how it would get stuck in the door frame, except that the floor is a little uneven in some levels. They didn’t have a comment when I mentioned that my Freedom Mobile had no problems getting through the doors without getting hung up. The vice president called me the next day and said that there was nothing more that can be done to fix my chair. I asked about a bigger foot pad as only a small part of my foot can be placed on the pad, and it catches the outside of my foot, and at the present I have to large sores where the wheels scrapped my foot. She said if I wanted to pay the $350 they would be happy to put it on. If I had that kind of money I would make faces at her. LOL
where is the medicine going?
I think it is a sad sad think when you have to keep your medication, money and any other valuables, and I don't have many under lock and key. Several months ago I noticed that my pain medicine just wasn't making it through the month. I would count them and hide them, but no matter where I would hide them I would be missing four or five, than up to ten. So I got a locked box, and my doctor warned me that someone could steal the whole box and under Oklahoma law she could not replace them. And low and behold the whole box was stollen. I went into withdrawels and came close to dyings. I know who took my med box, and it is very disheartning to know that someone you love would do that to their mother. So now I have a lock on my closet door, I never put my meds in the same place in the closet twice, and I devide them into two or three bottles so that if some are stolen I won't have to live in hell till the end of the month.
It is difficult enough to get anyone to write pain medications for you, and you have to sign a contract with the doctor. To me this seem like just one more freedom that is being taken from us. The freedom to live and make our own discions, and our doctors can not give out the medications that they know their patients need because of the laws that are being writtem every day.
Has anyone else on this site had problems dealing with their medication and living in constant excrusuating pain?
It is difficult enough to get anyone to write pain medications for you, and you have to sign a contract with the doctor. To me this seem like just one more freedom that is being taken from us. The freedom to live and make our own discions, and our doctors can not give out the medications that they know their patients need because of the laws that are being writtem every day.
Has anyone else on this site had problems dealing with their medication and living in constant excrusuating pain?
