| Re: We have a new member! Please welcome Pam -- Webmaster | |||
| Posted by Pam ® , 2008/03/21, 13:14:57 | Post Reply | Top of Thread | Main Forum |
|
Hi,
My name is Pam. I am 49 and I have been recently diagnosed with IBM My search on the internet for information on IBM has been frustrating. Everywhere is the same thing, Symtoms, Biopsy, and no cure.. I have been sent to a reumatologist and 2 neuro specilists over the last 6 months. I have had the muscle biopsy. All agree with the diagnosis, but none can really understand my need for information on where I am headed or what I can expect for my future. All they say is "you will need a walker in a few years and eventually you will probably want a wheelchair. There is no cure or treatment for this. It is progressive and we cannot tell you how quickly you will progress with the effects of IBM" The last neauologist I saw is recommending physio theropy, but other than to "teach me some minor exercises to use", I was left in the dark, because his beeper went off and he had to go to emergancy and just left me sitting in the exam room. I have no idea or information as to what to expect in the future. Finding someone else who has this disease is my best bet. I think maybe you can help. I have difficulty going up stairs, sitting up from a sitting position, and cannot stand from a squat position. We have installed a railing on our stairs in the house and security bars in the bathroom. My arms (exspecily my right side) and fingers are like a numbing, weak feeling. Some things are very hard or imposible to do, like push on a pump bottle is impossible to do. Needless to say, my legs also have weakness. I avoid curbs and stairs as often as I can. I use ramps and elevators. I do not know anyone else with this desease, and it is very difficult to explain what is happening to my body so that they understand. I am just so frustrated. I have a wonderful family who are at a loss as to what to say as I tell them what is happening. Of course they have never heard of IBM either. I explain what I know. I have only told my husband, my son (he is a nurse), my 2 sisters, and my best freind. I have not told my parents, who are 80 and do not need to hear this, as it will only upset them, nor my brother. I have not told my daughter who lives on the other side of the country. Not something you discuss to a daughter over the phone. I concider myself a very strong, independant individual. I have a great husband, wonderful children, 2 grandsons, supportive parents, siblings and freinds. I have a fantastic job that I love, working full time as a manager of a jewellery store. I need to know that my independance will stay secure. I am not a person who asks for help when I can do it on my own. I tend to be a little stubborn when it comes to getting a job done, and keep pushing no matter how hard it is to finish. Nothing stops me once I decide I am going to do it. I realize IBM is a life style change that is coming my way. I joined this site so I could blab on and on about what is in my head to someone I hope can understand both my frustration and my fears about the future because I beleive that you can understand what is in my head better than those who have not experienced what is happening to us. Don't worry, I am not about to just give up, like I said, I can be very stubborn, and I take the bulls by the horn and give them a shaking. I am not nieve. As I stated, I have already made minor adjustments to my home. My husband and I are discussing selling our house (its a split bugalow with stairs up and down at the entrance), and finding a single level bungalow. So plans are in the works. I guess I just need to talk to others with IBM to know what to expect, your expeiences, your differant realizations as they happened to you. Like my first realization as to the effects of IBM was that stupid pump spray bottle. I could not press down the pump at the top. I thought it was clogged! One of my co-workers took the bottle and squirt, it worked.... Wow , that was an eye opener. I thought to myself, How Stupid Is THAT??!! So this is what IBM is all about, not being able to press down on a pump bottle.........Wow. So that is the long and short of where I am right now. Lets all hope that this Lithium cloride thing goes somewhere.....but I will endure.....one way or another.... PAM |
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Replies to this message
Re: Re: We have a new member! Please welcome Pam Dagmar Slaven [ Mar 23, 10:04, 2008 ] link Re: Re: We have a new member! Please welcome Pam James R. Kilpatrick [ Mar 21, 15:57, 2008 ] +1 Re: Re: Re: We have a new member! Please welcome Pam Pam [ Mar 27, 06:32, 2008 ] Re: Re: We have a new member! Please welcome Pam Diane Roudebush [ Mar 21, 14:02, 2008 ] +2 Re: Re: Re: We have a new member! Please welcome Pam Pam [ Mar 27, 06:58, 2008 ] +1 Re: Re: Re: Re: We have a new member! Please welcome Pam Diane Roudebush [ Mar 27, 07:27, 2008 ] Re: Re: Re: We have a new member! Please welcome Pam Diana Kopulos [ Mar 23, 08:59, 2008 ]