Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 There is no better way to relate and educate others than to share your direct experiences. " It takes time to learn but I'm getting there " is quite short and sweet! Or you can always say, " I'm a bit tired right now, I'll explain later " . Here's an idea - make your own little pamphlet on how the implant works and why it takes time and hand it out to family and friends. In a message dated 12/10/2003 5:43:54 AM Eastern Standard Time, spottedlee@... writes: I am so tired of having to explain i wont hear well for communication for a while. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 you deal with it like you deal with people who when i say ohhh sorry i am deaf and these people turn around and treat me like i am the dumbest thing that walked the earth .... you deal with it by showing what's true i have had to prove i can think and still be deaf and i have had to prove i can hear but not understand when people would asks Can you hear me now?? i would honestly say YES!!! but i don't understand what i am hearing yet i am still relearning to hear it was funny to see how people began to change their wording when they would asks " can you hear me " to " do you understand what i am saying " the more i learned to understand the more they got excited for me .... that's a lot of good support i guess most people really don't understand what hearing is all about it is not just reacting to sounds coming in my head but learning to understand these sounds just be patient teaching the world is sometimes frustrating but it is also worth it the more people who learn about this CI and learn about hearing the more support we all get support is very good susan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 Lee, gave you some excellent advice about preparing some type of handout to those who don't understand that just because you've had a CI you are not automatically a hearing person. Here's a small sample of what you could print up. I think others could probably add to this. Sounds like a good project for CI Hear which we can add to the files when completed. For starters - here we go. What Will I Hear ? - Hearing sounds with a cochlear implant is different from normal hearing. -Recipients must learn to interpret sounds they may hear. -With time and experience, recognition will improve. - Normal hearing is not restored. - Recipients should hear environmental sounds. - Recipients should hear rhythms and patterns of speech. - Speech understanding ability increases over time. - Most people experience an improved ability to monitor the quality and volume of their own voice. - Understanding telephone speech varies from recognizing a limited number of words to being able to carry on conversations. OK everyone - let's work on this for Lee. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 Lee, Yes, everyone asks me " Can you hear? " . Yes and no. Yes, I can hear but I am still learning how to recognize sounds. I already can recognize some sounds but it took a lot of auditory training before I could do that. Someone told me about a blind man who got an implant recently and now he can see. He said he can see, but his brain is learning how to recognize different things he sees with his implanted eye. A. In a message dated 12/10/03 2:43:37 AM Pacific Standard Time, spottedlee@... writes: > How do you deal with it...... seems many of my friends " dont get it " ...... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2005 Report Share Posted June 24, 2005 In a way, you're lucky he's helping to watch out for you...even if it is a bit over the top. It took a long time to get my husband to understand that some things I just can't do sometimes. Like pull weeds. I used to sit outside for hours in the yard pulling weeds. Now I'm getting all moody about not being able to do it as much anymore. What hurts most is when friends come over and say I'm letting the weeds go...well duh! It hurts too much the day after pulling them. After going thru this for 12 years, my husband finally says, if you feel like doing something then do it, but don't hurt yourself. He helps a lot more than he used to in previous years. I'm sure as time goes by, you'll find a happy medium. :-) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Maggie http://www.4HockeyFans.com http://www.4FloridaHockey.com MSN: Maggies1429 AOL: Maggies85 ink_addicted1 wrote: I was diagnosed with RA & PA about a year ago. I am on Remicade infusions & Arava. The pain is unbelievable some days...like today. I am 44, married and have a 12 year old son. My question for everyone is: How do you get your spouse to understand some of what you are going through on a daily basis? He treats me like I am a cripple. I am in tears as I write this. He doesn't understand the disease aat all and has never read any of the information that I have given to him. He tells what I can & can't do....no 4-wheeling with him & the group because.."you'll get beat around". No bike riding...no exercising. He refused to go to the city today...WHY?? His excuse: "You can't walk any way". He says things like that all time. I have to sneak to do things. When I am in a lot of pain I hear the same old line...."you're alway's sick and in pain". I still can do a lot of things and I know my limits (most times ! I work 30 to 40 hours a week and I am on my feet during the entire shift. I feel really depressed right now and keep fighting the tears back. I feel really angry at my disease and my husband. Being protective is one thing but I feel like my life is being taken away not only from the disease but my husband. So I am hoping I can find people on here that I can talk to becausse it's really difficult to have no one. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2005 Report Share Posted June 24, 2005 ----- Original Message ----- From: ink_addicted1 > How do you get your spouse to understand some of what you are going through on a daily basis? He treats me like I am a cripple. I am in tears as I write this. My husband is the other way around. Even after 7 years, he still doesn't understand how much pain I'm in. He still expects me to do the things I did when I was young and healthy. I guess with some spouses, you just can't win. Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2005 Report Share Posted June 24, 2005 I understand totally what you are going through. HUSBANDS, grrrrrrrrrr, they don't really believe but they can't not believe either so they treat us like a broken china doll yet get upset that the old work horse in us is not still around. I've dealt with this for going on 7 years now, having been pain free for the last 3 of that time, however he didn't even notice for the first year, then when he did all he noticed was that I remain cautious about my health and to him this equates with being unwell. For the most part, what I learned to do is block out all of his statements that tell me what I can't do, because I can do anything now, just sometimes I choose not to because I am cautious not to over do things unless it's something that I CONSIDER worth overdoing it for. I hope you find a balance with his learning you want to be part of the family yet at times you will choose to rest. That's what I tell him I need when I think I shouldn't be doing things, I tell him it's just time for me to rest so I'm well for the long term. Dorey www.LivingWithRheumatoidArthritis.com ----- Original Message ----- From: " ink_addicted1 " <ink_addicted1@...> <Rheumatoid Arthritis > Sent: Wednesday, June 22, 2005 2:51 PM Subject: How to deal >I was diagnosed with RA & PA about a year ago. I am on Remicade > infusions & Arava. The pain is unbelievable some days...like today. > I am 44, married and have a 12 year old son. My question for > everyone > is: How do you get your spouse to understand some of what you are > going through on a daily basis? He treats me like I am a cripple. I > am in tears as I write this. He doesn't understand the disease aat > all and has never read any of the information that I have given to > him. He tells what I can & can't do....no 4-wheeling with him & the > group because.. " you'll get beat around " . No bike riding...no > exercising. He refused to go to the city today...WHY?? His > excuse: " You can't walk any way " . He says things like that all time. > I have to sneak to do things. When I am in a lot of pain I hear the > same old line.... " you're alway's sick and in pain " . I still can do a > lot of things and I know my limits (most times ! I work 30 to 40 > hours a week and I am on my feet during the entire shift. I feel > really depressed right now and keep fighting the tears back. I feel > really angry at my disease and my husband. Being protective is one > thing but I feel like my life is being taken away not only from the > disease but my husband. So I am hoping I can find people on here > that > I can talk to becausse it's really difficult to have no one. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2005 Report Share Posted June 24, 2005 --- In Rheumatoid Arthritis , Maggie <meshouse@e...> wrote: > It's hard to read your posts--they appear as one long horizontal line and take lots of scrolling. Can you adjust your settings? S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2005 Report Share Posted June 24, 2005 Hello, I'm so sorry you are feeling so alone and sad. Having RA definitely impacts marriage relationships, as both people struggle to adjust to a new, unwanted scenario. If the marriage has a strong foundation, you two will come through this difficult period just fine. Any chance you'd see a counselor? Talking about the issues with a neutral person could help a lot. Sounds like you'll need to be assertive with your husband about what you can do, and what you need to do (like exercise!) because he's underestimating your capabilities. Since RA symptoms change so frequently, only YOU know where you're at and how much you can handle on a day to day basis. Hang in there, and hang on to hope for a brighter tomorrow. Sierra > I was diagnosed with RA & PA about a year ago. I am on Remicade > infusions & Arava. The pain is unbelievable some days...like today. > I am 44, married and have a 12 year old son. My question for > everyone > is: How do you get your spouse to understand some of what you are > going through on a daily basis? He treats me like I am a cripple. I > am in tears as I write this. He doesn't understand the disease aat > all and has never read any of the information that I have given to > him. He tells what I can & can't do....no 4-wheeling with him & the > group because.. " you'll get beat around " . No bike riding...no > exercising. He refused to go to the city today...WHY?? His > excuse: " You can't walk any way " . He says things like that all time. > I have to sneak to do things. When I am in a lot of pain I hear the > same old line.... " you're alway's sick and in pain " . I still can do a > lot of things and I know my limits (most times ! I work 30 to 40 > hours a week and I am on my feet during the entire shift. I feel > really depressed right now and keep fighting the tears back. I feel > really angry at my disease and my husband. Being protective is one > thing but I feel like my life is being taken away not only from the > disease but my husband. So I am hoping I can find people on here > that > I can talk to becausse it's really difficult to have no one. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2005 Report Share Posted June 25, 2005 My husband has asked me to move out more than once. He has had a most difficult time with my RA and I have had it for 8 years. Well, I have not gone anywhere and know after 29 years of marriage he does not always mean what he says. I can truly relate to the husband problem here. I have tried to explain that I am dealing with enough stress without his attacks. He is a VietNam vet and had a head injury so it's been a rough road but I am still around. He wants me to gain weight and right now food just goes thru me... Doc failed to put milligram dosage on anti-inflammatory prescription so pharmacy could not fill it and my hands are swelling up right now. Looks like I am in for a fun weekend..... It was too late when they tried to call doc. ----- Original Message ----- From: Nina Rheumatoid Arthritis Sent: Friday, June 24, 2005 3:41 PM Subject: Re: How to deal ----- Original Message ----- From: ink_addicted1 > How do you get your spouse to understand some of what you are going through on a daily basis? He treats me like I am a cripple. I am in tears as I write this. My husband is the other way around. Even after 7 years, he still doesn't understand how much pain I'm in. He still expects me to do the things I did when I was young and healthy. I guess with some spouses, you just can't win. Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2005 Report Share Posted June 25, 2005 I feel bad for you. Try to hang in there and keep seeing your docs. They'll eventually find the right med combination that will help your pain. Plus, if it's like my wife's RA it might subside a bit after a while and not hurt so much. She has really bad flares that can last a few months but then they let up a bit and she feels better. I mean no offense by this, but frankly, your husband is a jerk. He promised to love you in " sickness and in health " . It doesn't sound to me like he's trying to " protect " you by not letting you do things - it sounds more like he's trying to punish you for being sick with RA (which you have absolutely NO control over). " You're always sick and in pain " - most people wouldn't even say that to a STRANGER, much less someone they love! Someone suggested counseling which is probably the only way you'll ever get him to maybe understand a little of what you're going through. I know that it isn't easy for either you or him. But if he doesn't come around - at least a little bit - you should find some new friends. Maybe others with RA in your area. And do stuff with them. I really mean no offense by this, I'm just trying to empathize with you. There are lots of people in the world who understand your suffering. I wish you the best - try to stay strong. Don & Eileen ink_addicted1 wrote: > I was diagnosed with RA & PA about a year ago. I am on Remicade > infusions & Arava. The pain is unbelievable some days...like today. > I am 44, married and have a 12 year old son. My question for > everyone > is: How do you get your spouse to understand some of what you are > going through on a daily basis? He treats me like I am a cripple. I > am in tears as I write this. He doesn't understand the disease aat > all and has never read any of the information that I have given to > him. He tells what I can & can't do....no 4-wheeling with him & the > group because.. " you'll get beat around " . No bike riding...no > exercising. He refused to go to the city today...WHY?? His > excuse: " You can't walk any way " . He says things like that all time. > I have to sneak to do things. When I am in a lot of pain I hear the > same old line.... " you're alway's sick and in pain " . I still can do a > lot of things and I know my limits (most times ! I work 30 to 40 > hours a week and I am on my feet during the entire shift. I feel > really depressed right now and keep fighting the tears back. I feel > really angry at my disease and my husband. Being protective is one > thing but I feel like my life is being taken away not only from the > disease but my husband. So I am hoping I can find people on here > that > I can talk to becausse it's really difficult to have no one. > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2005 Report Share Posted June 25, 2005 Hi it took my husband a long time to understand just what I am going through I have had RA for 13years now and he is just finldly getting aroungd ro understanding jut how much pain I am going through it took an ankle fusen to see the light that waas 4 years ago but now he understands great he has even taken over some of the house wok to help me he has changed that much but now he understands the pain and stiffness that I go through just hang in there and hopefully thing will get better Sherrie > I was diagnosed with RA & PA about a year ago. I am on Remicade > infusions & Arava. The pain is unbelievable some days...like today. > I am 44, married and have a 12 year old son. My question for > everyone > is: How do you get your spouse to understand some of what you are > going through on a daily basis? He treats me like I am a cripple. I > am in tears as I write this. He doesn't understand the disease aat > all and has never read any of the information that I have given to > him. He tells what I can & can't do....no 4-wheeling with him & the > group because.. " you'll get beat around " . No bike riding...no > exercising. He refused to go to the city today...WHY?? His > excuse: " You can't walk any way " . He says things like that all time. > I have to sneak to do things. When I am in a lot of pain I hear the > same old line.... " you're alway's sick and in pain " . I still can do a > lot of things and I know my limits (most times ! I work 30 to 40 > hours a week and I am on my feet during the entire shift. I feel > really depressed right now and keep fighting the tears back. I feel > really angry at my disease and my husband. Being protective is one > thing but I feel like my life is being taken away not only from the > disease but my husband. So I am hoping I can find people on here > that > I can talk to becausse it's really difficult to have no one. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2005 Report Share Posted June 25, 2005 --- In Rheumatoid Arthritis , " Kay Simpson " > Doc failed to put milligram dosage on anti-inflammatory prescription so pharmacy could not fill it and my hands are swelling up right now. Looks like I am in for a fun weekend..... It was too late when they tried to call doc. Can you take an over-the-counter anti-inflammatory over the weekend? Or get an RX from the on-call doc? Don't suffer! S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2005 Report Share Posted June 25, 2005 Hi, I have the same problem with my husband even though he has done a great deal of research about RA and knows what I'm going through. I find that he is using my illness as an excuse to get what he wants and, to tell you the truth, I sneak to do the things I want to do also. So...is your husband saying you can't go 4 wheeling because "you'll get beat down" or is he really saying that he doesn't want you to go because you'll slow him down? Think about what he says and try to see what he wants to get out of it for himself. If you can figure out his motive, you'll be in a better position to talk him into a compromise. Good luck, (SE Ohio)ink_addicted1 <ink_addicted1@...> wrote: I was diagnosed with RA & PA about a year ago. I am on Remicade infusions & Arava. The pain is unbelievable some days...like today. I am 44, married and have a 12 year old son. My question foreveryone is: How do you get your spouse to understand some of what you are going through on a daily basis? He treats me like I am a cripple. I am in tears as I write this. He doesn't understand the disease aat all and has never read any of the information that I have given to him. He tells what I can & can't do....no 4-wheeling with him & the group because.."you'll get beat around". No bike riding...no exercising. He refused to go to the city today...WHY?? His excuse: "You can't walk any way". He says things like that all time. I have to sneak to do things. When I am in a lot of pain I hear the same old line...."you're alway's sick and in pain". I still can do a lot of things and I know my limits (most times ! I work 30 to 40 hours a week and I am on my feet during the entire shift. I feel really depressed right now and keep fighting the tears back. I feel really angry at my disease and my husband. Being protective is one thing but I feel like my life is being taken away not only from the disease but my husband. So I am hoping I can find people on herethat I can talk to becausse it's really difficult to have no one. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2005 Report Share Posted June 25, 2005 Hi Kay, Are you icing your hands? I credit faithful icing for my lack of permanent damage. My feet used to be so bad I was icing them 4 to 5 times a day! It was hard living like that, being " chained " to my ice but it really does offer relief and helps with the swelling. > --- In Rheumatoid Arthritis , " Kay Simpson " > > Doc failed to put milligram dosage on anti-inflammatory prescription > so pharmacy could not fill it and my hands are swelling up right now. > Looks like I am in for a fun weekend..... It was too late when they > tried to call doc. > > > Can you take an over-the-counter anti-inflammatory over the weekend? Or > get an RX from the on-call doc? Don't suffer! > > S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2005 Report Share Posted June 25, 2005 This is intended to be a funny......please don't take offence, but he's probably saying.......If you get beat up going 4 wheeling I won't get sex tonight so you can't go...........lol Dorey ----- Original Message ----- From: M. C. Warren Rheumatoid Arthritis Sent: Saturday, June 25, 2005 7:02 AM Subject: Re: How to deal Hi, I have the same problem with my husband even though he has done a great deal of research about RA and knows what I'm going through. I find that he is using my illness as an excuse to get what he wants and, to tell you the truth, I sneak to do the things I want to do also. So...is your husband saying you can't go 4 wheeling because "you'll get beat down" or is he really saying that he doesn't want you to go because you'll slow him down? Think about what he says and try to see what he wants to get out of it for himself. If you can figure out his motive, you'll be in a better position to talk him into a compromise. Good luck, (SE Ohio)ink_addicted1 <ink_addicted1@...> wrote: I was diagnosed with RA & PA about a year ago. I am on Remicade infusions & Arava. The pain is unbelievable some days...like today. I am 44, married and have a 12 year old son. My question foreveryone is: How do you get your spouse to understand some of what you are going through on a daily basis? He treats me like I am a cripple. I am in tears as I write this. He doesn't understand the disease aat all and has never read any of the information that I have given to him. He tells what I can & can't do....no 4-wheeling with him & the group because.."you'll get beat around". No bike riding...no exercising. He refused to go to the city today...WHY?? His excuse: "You can't walk any way". He says things like that all time. I have to sneak to do things. When I am in a lot of pain I hear the same old line...."you're alway's sick and in pain". I still can do a lot of things and I know my limits (most times ! I work 30 to 40 hours a week and I am on my feet during the entire shift. I feel really depressed right now and keep fighting the tears back. I feel really angry at my disease and my husband. Being protective is one thing but I feel like my life is being taken away not only from the disease but my husband. So I am hoping I can find people on herethat I can talk to becausse it's really difficult to have no one. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2005 Report Share Posted June 25, 2005 It's interesting that you iced your feet and found so much relief. I don't ice because when i was doing accupuncture I talked alot with my doctor of accupuncture who explained how important it was to keep the feet warm. The reason for this was because when we chill our feet we are also chilling our organs. In order for our organs to work efficiently they must be nurtured to health and chilling them is not good. So I took an internal approach to healing, focusing on my organs to heal the pain in my hands and feet, this worked for me........you took the other approach and you say it worked for you, very interesting how the different approaches seem to work. I tend not to even ice my childrens injuries because swelling is the bodies natural response to an injury and I haven't figured out yet how this could be so bad. They fight the inflamation with antioxidants so it goes down quickly and the bodies natural mechanism is in place.......since our bodies were intended to heal themselves I can't see why we fight what the body naturally does, but I may be way out to lunch on this. I also don't treat a minor fever in the kids thinking along the same lines, minor fevers in children keep them resting, medicate and they are up running around again not getting the rest their bodies need when they are obviously sick and needing rest to recover. Dorey www.LivingWithRheumatoidArthritis.com ----- Original Message ----- From: " " <catdelouise@...> <Rheumatoid Arthritis > Sent: Saturday, June 25, 2005 8:09 AM Subject: Re: How to deal > Hi Kay, > > Are you icing your hands? I credit faithful icing for my lack of > permanent > damage. My feet used to be so bad I was icing them 4 to 5 times a day! > It was > hard living like that, being " chained " to my ice but it really does offer > relief and > helps with the swelling. > > > > >> --- In Rheumatoid Arthritis , " Kay Simpson " >> > Doc failed to put milligram dosage on anti-inflammatory prescription >> so pharmacy could not fill it and my hands are swelling up right now. >> Looks like I am in for a fun weekend..... It was too late when they >> tried to call doc. >> >> >> Can you take an over-the-counter anti-inflammatory over the weekend? Or >> get an RX from the on-call doc? Don't suffer! >> >> S. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2005 Report Share Posted June 26, 2005 Yes, I think you need to listen to your different body parts! My feet and ankles were so swollen they screamed for ice! When my RA got into my elbows, arms, wrists and hands, I more often did heat instead of ice. I also have Costochondritis and have found more relief with heat. Right now I am doing quite well with my RA and the acupuncture I am doing is helping my Costo. I am coming along! > >> --- In Rheumatoid Arthritis , " Kay Simpson " > >> > Doc failed to put milligram dosage on anti-inflammatory prescription > >> so pharmacy could not fill it and my hands are swelling up right now. > >> Looks like I am in for a fun weekend..... It was too late when they > >> tried to call doc. > >> > >> > >> Can you take an over-the-counter anti-inflammatory over the weekend? Or > >> get an RX from the on-call doc? Don't suffer! > >> > >> S. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2005 Report Share Posted June 28, 2005 , Thanks for the concern. I did have some other anti-inflammatory to help me thru the weekend. What alarms me is that my good hand had started swelling up. My left hand has not been as affected as my right. Kay ----- Original Message ----- From: Rheumatoid Arthritis Sent: Saturday, June 25, 2005 10:09 AM Subject: Re: How to deal Hi Kay,Are you icing your hands? I credit faithful icing for my lack of permanent damage. My feet used to be so bad I was icing them 4 to 5 times a day! It was hard living like that, being "chained" to my ice but it really does offer relief and helps with the swelling.> --- In Rheumatoid Arthritis , "Kay Simpson" > > Doc failed to put milligram dosage on anti-inflammatory prescription > so pharmacy could not fill it and my hands are swelling up right now. > Looks like I am in for a fun weekend..... It was too late when they > tried to call doc.> > > Can you take an over-the-counter anti-inflammatory over the weekend? Or > get an RX from the on-call doc? Don't suffer!> > S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2005 Report Share Posted June 28, 2005 ----- Original Message ----- From: Kay Simpson > What alarms me is that my good hand had started swelling up. My left hand has not been as affected as my right. Mine does the same. I suspect it's because I am right handed and use it more. Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 Delphine, I'm sure we have all gone through periods where we felt like this. The whole thing feels pretty unfair to me sometimes too. As far as having a relationship, there are many people out there who are capable and willing of looking past the SMA. I think it takes a special person, but it's the kind of person everyone would want to meet. .... compassionate , thoughtful, caring, etc. Online is a great way to meet someone, because they have a chance to get to know you before you actually meet them. I realize it gets discouraging, but it gets discouraging for people who are not disabled also. Meeting the right person is hard for anyone, but don't give up. You're still really young and have plenty of time. Robin how to deal Hello All, I first want to say how much i have enjoyed being on this listserv. i feel like i have gotten support and understanding from here that i could not have gotten from anywhere else. i feel like i am definitely going through something right now in my life. i have recently graduated from college and have transitioned into the " big girl " world with having a job and paying taxes and all of that stuff. i know that this would be a hard time for most people, but i feel like mine is even more complicated by the fact that i have sma. in college, i really think i was so absorbed in just getting through that i really didn't focus on much else. now i am out, about to turn 24 and, never having had a serious relationship, started to take an active role in looking through online dating. i have had many first dates but no seconds. i guess this got me to start reflecting on me and on SMA. i started to look at things like where i would be in 10-20 years, life expectancy and things like that. the info i have gotten seems to be so variable. i went to an mda clinic and see if i could get answers from them and i couldn't. i am pretty healthy. i have never had pneumonia. i don't really use any equipment besides a wheelchair. i have care providers help me with dressing, bathroom, and showers but i am able to do a lot of stuff by myself. i guess i am just scared. i don't know. i am frustrated because i don't know. and i think it is extremely unfair that i have this. i am starting to doubt if i will ever find anyone who will accept and love me and who i will love in turn. i want to have children but i don't know if that will happen. i guess my major question is how do you all deal with these type of feelings? what helps you get through the day? i am just having a very hard time right now and just need some advice. -- Delphine s And the day came when the risk it took to remain tight in the bud was more painful than the risk it took to blossom. -Anais Nin Quote Link to comment Share on other sites More sharing options...
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