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MS *****!!! (vent!)
I hate posting this here but I got smacked in the face yesterday with a dose of reality and I'm really not sure what to do with it and just need to vent (so stop here if you don't want to hear someone whine!). And please don't take offense to anything that I write!
I'll start with a bit of background..42 years old, married, mom to an 11 year old boy. Dx with MS in Jan. 2009 after ignoring frequent urination issues for years. My main issue with the MS has always been bladder issues until probably the last year and a half, when I began to develop issues with walking and balance. Was put on Copaxone 4/09 and had a neurostimulator implanted around that time to try to help with the bladder issues (which no longer works for me). Admittedly, I was not the most compliant patient, as I would do my injections for a few weeks, then stop for a few weeks, etc. Last year my hubby was laid off and we lost our insurance, so I was off meds completely until Feb. of this year when I started on Gilenya. Right after starting G, we moved from Las Vegas to Seattle for hubby's new job. Was not able to get in with my new neurologist until May, but since then it has been a whirlwind of blood tests, vision checks, rehab doc, etc. She put me on Ampyra, which I started last week. Also, after a fall down the stairs in Jan and injuring my shoulder, and years of back pain, decided I would start to see a chiropractor (have heard that chiropractor and massage is good for MS patients).
Anyway, went to PT for the first time yesterday for my initial consultation. When I told the therapist I didn't use any assistive devices, he told me I might want to consider them, but I vehemently told him they were not an option at this time. By the end of the appt. he was strongly suggesting that I get a leg brace. What he told me was my right hip and right ankle are so bad, that if it wasn't for my "woman" hips centering my gravity and strong quad muscles, that I would surely be using at least a cane, if not more, to walk.
I have spent my entire life as an athlete, and although I know my gait has changed significantly, I normally just push through it. Mornings aren't too bad, except for that kind of stiff legged walk, but usually by the afternoon I limp pretty good to compensate for foot drop. I was not ready to hear the therapist strongly suggest using a brace. Nothing against people who already use them, but it's just not me. It was a huge step for me to ask the Neuro to fill out the paperwork for a handicap parking permit, and I only did that because my husband pushed me to.
Maybe I still think of myself as young, and healthy, neither of which I am, but it just ***** to have this diagnosis for the rest of my life. I have never looked at MS in a good light. When I was told I had MS, the only thing I could picture was Annette Funicello looking like **** in her wheelchair, and I still have that vision today. I want to be able to explore my new city with my family and I can't do it!! Walking *****, and unless I am within easy reach of a bathroom, forget it! I don't volunteer at my sons school, cause I don't want to have to limp to the bathroom every five minutes. I hate myself for allowing MS to take me away from my family!!
I don't know where I am going with this, or what I am looking for, but I am in tears as I write this. I guess I just need to get it out.
Thanks for listening - Kristen
I'll start with a bit of background..42 years old, married, mom to an 11 year old boy. Dx with MS in Jan. 2009 after ignoring frequent urination issues for years. My main issue with the MS has always been bladder issues until probably the last year and a half, when I began to develop issues with walking and balance. Was put on Copaxone 4/09 and had a neurostimulator implanted around that time to try to help with the bladder issues (which no longer works for me). Admittedly, I was not the most compliant patient, as I would do my injections for a few weeks, then stop for a few weeks, etc. Last year my hubby was laid off and we lost our insurance, so I was off meds completely until Feb. of this year when I started on Gilenya. Right after starting G, we moved from Las Vegas to Seattle for hubby's new job. Was not able to get in with my new neurologist until May, but since then it has been a whirlwind of blood tests, vision checks, rehab doc, etc. She put me on Ampyra, which I started last week. Also, after a fall down the stairs in Jan and injuring my shoulder, and years of back pain, decided I would start to see a chiropractor (have heard that chiropractor and massage is good for MS patients).
Anyway, went to PT for the first time yesterday for my initial consultation. When I told the therapist I didn't use any assistive devices, he told me I might want to consider them, but I vehemently told him they were not an option at this time. By the end of the appt. he was strongly suggesting that I get a leg brace. What he told me was my right hip and right ankle are so bad, that if it wasn't for my "woman" hips centering my gravity and strong quad muscles, that I would surely be using at least a cane, if not more, to walk.
I have spent my entire life as an athlete, and although I know my gait has changed significantly, I normally just push through it. Mornings aren't too bad, except for that kind of stiff legged walk, but usually by the afternoon I limp pretty good to compensate for foot drop. I was not ready to hear the therapist strongly suggest using a brace. Nothing against people who already use them, but it's just not me. It was a huge step for me to ask the Neuro to fill out the paperwork for a handicap parking permit, and I only did that because my husband pushed me to.
Maybe I still think of myself as young, and healthy, neither of which I am, but it just ***** to have this diagnosis for the rest of my life. I have never looked at MS in a good light. When I was told I had MS, the only thing I could picture was Annette Funicello looking like **** in her wheelchair, and I still have that vision today. I want to be able to explore my new city with my family and I can't do it!! Walking *****, and unless I am within easy reach of a bathroom, forget it! I don't volunteer at my sons school, cause I don't want to have to limp to the bathroom every five minutes. I hate myself for allowing MS to take me away from my family!!
I don't know where I am going with this, or what I am looking for, but I am in tears as I write this. I guess I just need to get it out.
Thanks for listening - Kristen
Hi Kristen
Welcome to our forum family! I sure know how you feel. MS really does s**k.
I am 55 and have had MS for a long time. Until the last few years it never really affected me. I am now having increasingly more mobility problems, although I do feel blessed that I can still walk. I do however need assistance to walk. I can walk independently in my home (or someone else's home) but any where else I use a cane. I found a man who makes beautiful hand carved and painted wooden canes that people often compliment me on it! I have to admit I do walk very slowly and that is very annoying. I can walk quicker when I walk holding my husband's hand or pushing a shopping cart. I do not have a leg brace, but I do wear a Walkaide (which looks a little like I am under house arrest!) I will admit that this is all a pain in the a** ! MS is unfair, but I just keep trying to do the best I can. Try and remember that you are a brave survivor. No you won't ever get away from the MS ride, but you can do all you can to make your life easier. Acceptance of bein "disabled" actually took me a long time, but once I did and began using mobility assistance and parking passes I am getting more comfortable. Give yourself time and vent when you need to....we are all here for you:)
(((hugs)))
Deb
Welcome to our forum family! I sure know how you feel. MS really does s**k.
I am 55 and have had MS for a long time. Until the last few years it never really affected me. I am now having increasingly more mobility problems, although I do feel blessed that I can still walk. I do however need assistance to walk. I can walk independently in my home (or someone else's home) but any where else I use a cane. I found a man who makes beautiful hand carved and painted wooden canes that people often compliment me on it! I have to admit I do walk very slowly and that is very annoying. I can walk quicker when I walk holding my husband's hand or pushing a shopping cart. I do not have a leg brace, but I do wear a Walkaide (which looks a little like I am under house arrest!) I will admit that this is all a pain in the a** ! MS is unfair, but I just keep trying to do the best I can. Try and remember that you are a brave survivor. No you won't ever get away from the MS ride, but you can do all you can to make your life easier. Acceptance of bein "disabled" actually took me a long time, but once I did and began using mobility assistance and parking passes I am getting more comfortable. Give yourself time and vent when you need to....we are all here for you:)
(((hugs)))
Deb
Woww!!! .... I have never before, have feel so much love and care like am experiencing now. in a web forum. I am 80 years young. this is the first time
am participating. this is awsome. I can understand all of you. To God be the Glory! am a surviver of stroke,heart,and many other ilnesses and most of the time been along at the most difficult times. only believing that God loves us so much has sustain me. Kristen I can only help you with my prayers. but believe me I was very young when I read this,(I was going thru a lot and i know your not complaining but i guess i was, } It said: I was very sad because I had no shoes until I met someone who had no feet. yes. Since then, I thought in concentrating in praying for others. It has help me. I invite you to try it. love nettie
am participating. this is awsome. I can understand all of you. To God be the Glory! am a surviver of stroke,heart,and many other ilnesses and most of the time been along at the most difficult times. only believing that God loves us so much has sustain me. Kristen I can only help you with my prayers. but believe me I was very young when I read this,(I was going thru a lot and i know your not complaining but i guess i was, } It said: I was very sad because I had no shoes until I met someone who had no feet. yes. Since then, I thought in concentrating in praying for others. It has help me. I invite you to try it. love nettie
Kristen
I fought tooth and nail against a brace, cane and handicapped tag but Now that I have them and use them I get around so much more and feel like there isn;t anything I cannot do. I hate this whole deal, MS S*&ks plain and simple and I fight to keep being independent every day. I will not let it get me. I get where you are coming from. while not an athlete I used to walk everywhere now not so much but I do more now than I did 6 months ago.
Hang in there and your heat will tell you what best and you will be out exploring in no time. Keep venting this is the one place we can and no one thinks we are nuts!
Take care
Tracy
I fought tooth and nail against a brace, cane and handicapped tag but Now that I have them and use them I get around so much more and feel like there isn;t anything I cannot do. I hate this whole deal, MS S*&ks plain and simple and I fight to keep being independent every day. I will not let it get me. I get where you are coming from. while not an athlete I used to walk everywhere now not so much but I do more now than I did 6 months ago.
Hang in there and your heat will tell you what best and you will be out exploring in no time. Keep venting this is the one place we can and no one thinks we are nuts!
Take care
Tracy
Kristen!
Long time, no see girl. This stubborness is probably exactly (despite what the doc said about the lady hips) what has kept you upright, and forthright, and downright dead set against giving in.
Believe this: adding the brace is not giving in - it may keep you straight, and from doing damage to the other foot/leg that's been pulling double duty.
Docs may be right about our medical limitations, however, I bet some doctors told that guy with one arm years and years ago that he shouldn't climb Mount Everist too.
While you may not be able to explore the City right now at this very minute, I'd put a pile of money on a bet that it will be soon :)
Your vent here was an important one for not only you,but all who have read it, including me :)
Nice to see you, and keep on keeping on girl.
(((Hugs)))
-Shell
Long time, no see girl. This stubborness is probably exactly (despite what the doc said about the lady hips) what has kept you upright, and forthright, and downright dead set against giving in.
Believe this: adding the brace is not giving in - it may keep you straight, and from doing damage to the other foot/leg that's been pulling double duty.
Docs may be right about our medical limitations, however, I bet some doctors told that guy with one arm years and years ago that he shouldn't climb Mount Everist too.
While you may not be able to explore the City right now at this very minute, I'd put a pile of money on a bet that it will be soon :)
Your vent here was an important one for not only you,but all who have read it, including me :)
Nice to see you, and keep on keeping on girl.
(((Hugs)))
-Shell
Kristen! I'm so sorry you're feeling rotten. Yes, ranting, venting, and otherwise carrying on is totally acceptable around here. Remember, a brace is just a tool. Yes, it ***** that you need one, but I think once you get used to it, you'll find it most helpful.
Remember, acceptance is NOT surrender!
Big, gentle hugs,
Lisa
Remember, acceptance is NOT surrender!
Big, gentle hugs,
Lisa
Thank you all for your comments. Even though I still feel rotten, they have helped, even if just a little bit!
Alex, thank you for sharing what you've been going through. I'll keep you in my prayers!
Kristen
Alex, thank you for sharing what you've been going through. I'll keep you in my prayers!
Kristen
Hi Kristen,
I'm sure all of the above comments have helped somewhat but I just wanted to chip in and say, nobody would blame you for needing to vent every so often. It's human nature...even for those fortunate enough not to have MS! I think one of the hardest things about MS is how unpredictable it is and how many areas of one's life it can affect. I'm 34 with a 15 month old and a 5 year old and the sheer exhaustion really annoys me every day! I haven't any experience of the bladder issues but I can understand your frustration re the walking. It's tough when you're used to being so active and sometimes it's hard to slow down. Sending you best wishes! Zoe
I'm sure all of the above comments have helped somewhat but I just wanted to chip in and say, nobody would blame you for needing to vent every so often. It's human nature...even for those fortunate enough not to have MS! I think one of the hardest things about MS is how unpredictable it is and how many areas of one's life it can affect. I'm 34 with a 15 month old and a 5 year old and the sheer exhaustion really annoys me every day! I haven't any experience of the bladder issues but I can understand your frustration re the walking. It's tough when you're used to being so active and sometimes it's hard to slow down. Sending you best wishes! Zoe
First things first. From the prospective of a 52 year old, 42 is young :-) It most assuredly su*cks to have MS. None of us asked for it and certainly none of our loved ones did either. When I was diagnosed last October I had no idea what it meant, no idea if was going to be able to walk in 6 months or 6 years.
I told my girlfriend that she didn't sign up for this and that I would completely understand if she wanted to walk away. She said, and I quote, "Don't be an as**ole!" :-) She has been at my side every step of the way.
A perq of membership in the I have MS Club is permission to occasionally scream at the top of our lungs about how much it su*cks, then go on about our day :-)
Kyle
I told my girlfriend that she didn't sign up for this and that I would completely understand if she wanted to walk away. She said, and I quote, "Don't be an as**ole!" :-) She has been at my side every step of the way.
A perq of membership in the I have MS Club is permission to occasionally scream at the top of our lungs about how much it su*cks, then go on about our day :-)
Kyle
Sometimes we just can't take it anymore, and we have to blow of some steam. I recently was approved for an electric wheelchair, and every step leading up to it was a struggle. I think a pretty cane may be just what you need though. Forearm crutches are more supportive, but you may not need them. You can enter "pretty walking canes" in the search bar, and dozens of websites will pop up for you. Maybe if you treat them like accessories they would be easier to stomach??? A leg brace would probably be a great help to you, and many people wear them- even for sports related support. The combination may just give you back the things you miss the most.
I just turned 43 last month. None of us ever expected to be in the situation we are in now. Is there a relaxing hobby you can take up? One that would not be affected by your physical limitations: painting, crocheting, etc? I'm not terribly creative myself, but my husband bought me a book of geometric shapes I can color in. It's really just mindless activity, but when I am very stressed- it actually helps.
I hope you reconsider the pt's suggestions. I know it bites, but it may let you have back more of your life.]
Hugs,
Tammy
I just turned 43 last month. None of us ever expected to be in the situation we are in now. Is there a relaxing hobby you can take up? One that would not be affected by your physical limitations: painting, crocheting, etc? I'm not terribly creative myself, but my husband bought me a book of geometric shapes I can color in. It's really just mindless activity, but when I am very stressed- it actually helps.
I hope you reconsider the pt's suggestions. I know it bites, but it may let you have back more of your life.]
Hugs,
Tammy
I can definitely relate to your pain and frustration. The thing that gets me down most is I do fill guilty. Guilty for my husband and especially for my kids. None of us or our families have signed up for this. It truly blows!
Unfortunately, I haven't found a way to shake this guilt (it hasn't been a year yet since my dx). I do go to counselling, and it does help. I think the whole guilt thing needs to be focused on more by myself to the counsellor.
Idk what else to say because I cried reading this post, because I feel like it could have been something I'd written!
Laura
Unfortunately, I haven't found a way to shake this guilt (it hasn't been a year yet since my dx). I do go to counselling, and it does help. I think the whole guilt thing needs to be focused on more by myself to the counsellor.
Idk what else to say because I cried reading this post, because I feel like it could have been something I'd written!
Laura
I'm still very new to this, and I'm really sorry you're dealing with so much rough stuff all at once. But... I like your attitude. Sometimes being p!ssed off is our way of gearing up for a fight, right? When I'm four years out from my diagnosis, I think I want to be just like you. You'll wear a brace if and when you're ready to wear a brace.
I'm glad we can be here for you when you need to vent.
Best,
Jane
I'm glad we can be here for you when you need to vent.
Best,
Jane
COMMUNITY LEADER
Yeah I hear you, self generated reality checks are bad enough but those unexpected reality checks just su_ck on so many levels! They should come with a warning, maybe wear a T.Shirt saying "Prepare your self, I dont tell you what you want you to hear, I tell you what you NEED to hear"
I dont think its going to make any difference what state my body ends up in, in my head i will always be that girl, an athlete pushing to the outer limits, maybe thats true of you as well. I dont know that its such a bad thing to think, I'm pretty sure its what helps me to keep pushing forward.
Vent as much as you need, scream at the full moon if it helps your head space, um chocolate seems to be all the rage around here when we're in need of some wyne.
Hugs..............JJ
I dont think its going to make any difference what state my body ends up in, in my head i will always be that girl, an athlete pushing to the outer limits, maybe thats true of you as well. I dont know that its such a bad thing to think, I'm pretty sure its what helps me to keep pushing forward.
Vent as much as you need, scream at the full moon if it helps your head space, um chocolate seems to be all the rage around here when we're in need of some wyne.
Hugs..............JJ
The way I work it is to stay as mobile and independent of aides as I can. I have had MS my whole life but they did not figure it out until I was 46. I am now 49 and still walk mostly unassisted. I use crutches if I have to stand for long periods. I have had to adjust my sports. I switched from cycling to horseback riding.
I use to think MS was the worst until last month when I found out I have a widespread cancer. I underwent extensive surgery three weeks ago and as soon as I got home started taking my walks around the neighborhood. The Cancer has made my legs much weaker but I plug along.
I do not like either disease. I do have an okay life inspite of them. Being adaptable and having a tough attitude helps me through.
Alex
I use to think MS was the worst until last month when I found out I have a widespread cancer. I underwent extensive surgery three weeks ago and as soon as I got home started taking my walks around the neighborhood. The Cancer has made my legs much weaker but I plug along.
I do not like either disease. I do have an okay life inspite of them. Being adaptable and having a tough attitude helps me through.
Alex
Kristen, your post resonates on so many levels and I am glad you put that rant out there for all of us to share. There are way too many things in life that are not fair - MS is definitely one of them. there you are in this wonderful new city and part of our country and not able to explore - and that does su$k.
I can identify with the bathroom issues, because I was looking for one about every 45 minutes at Disney World last week. That was much worse than what my 4 year old granddaughter needed. Or even the diaper changes for the 18 month old. I've found a rhythm, somewhat and do much better later in the day. Do you find that is true for you? I also would be housebound if I couldn't do the intermittent self-catherization. It is so important to empty the bladder completely and I don't remember if you also do ISC. If not, talk to your doctor, it really can be life changing. My problem in Florida was I was drinking tons of water to hydrate and cool off from the 90+ temperatures. I couldn't win.
A leg brace says so much psychologically, but it can also be a good thing if it would help you to get out and do more. I understand the psychological thing - I also broke down and rented a wheelchair at Disneyfor two days and that really sucked. But it made getting around a lot better for everyone.
good luck with working through all of this -
Lulu
I can identify with the bathroom issues, because I was looking for one about every 45 minutes at Disney World last week. That was much worse than what my 4 year old granddaughter needed. Or even the diaper changes for the 18 month old. I've found a rhythm, somewhat and do much better later in the day. Do you find that is true for you? I also would be housebound if I couldn't do the intermittent self-catherization. It is so important to empty the bladder completely and I don't remember if you also do ISC. If not, talk to your doctor, it really can be life changing. My problem in Florida was I was drinking tons of water to hydrate and cool off from the 90+ temperatures. I couldn't win.
A leg brace says so much psychologically, but it can also be a good thing if it would help you to get out and do more. I understand the psychological thing - I also broke down and rented a wheelchair at Disneyfor two days and that really sucked. But it made getting around a lot better for everyone.
good luck with working through all of this -
Lulu
Kristen,
I'm so sorry you are going thru all of this. Vent all you need to. We're all family here Diagnosed or not. We're going thru similar things.MS *#%*'s.
As Chris said, Vent,let it out!
We're here for you.Hang in there!
All that you have been thru is stressful and it is worsening your sx's.
I'm lifting you in prayer as I type this.
I went thru something similar over weekend. I am 42, married and have a 11 year old son. I have possible MS.Neuro referred me to MS specialist and I've waited almost 4 mths and I finally will get to see her June 20th.Praise God for that!
I don't know what is in our future but I do believe the Lord will take care of us and will not put more on us then we can handle.:)
Praying that the Lord will bless you with better days ahead.:)
Hugs and blessings,
Tammy:)
I'm so sorry you are going thru all of this. Vent all you need to. We're all family here Diagnosed or not. We're going thru similar things.MS *#%*'s.
As Chris said, Vent,let it out!
We're here for you.Hang in there!
All that you have been thru is stressful and it is worsening your sx's.
I'm lifting you in prayer as I type this.
I went thru something similar over weekend. I am 42, married and have a 11 year old son. I have possible MS.Neuro referred me to MS specialist and I've waited almost 4 mths and I finally will get to see her June 20th.Praise God for that!
I don't know what is in our future but I do believe the Lord will take care of us and will not put more on us then we can handle.:)
Praying that the Lord will bless you with better days ahead.:)
Hugs and blessings,
Tammy:)
Every now and then we all need to vent. Like you, I didn't want to apply for a handicapped parking permit, but when I'm really tired or having a bad day I'm glad to have it. Sometimes it makes the difference in whether or not I'm able to stop for a few items at the end of the day.
You've been through an awful lot in the last year. It's no wonder you needed to let it all out. Getting used to a new doctor is never easy and you are still getting used to new surroundings. Have a good cry, take a deep breath and regroup. We're here when you need us!
Chris
You've been through an awful lot in the last year. It's no wonder you needed to let it all out. Getting used to a new doctor is never easy and you are still getting used to new surroundings. Have a good cry, take a deep breath and regroup. We're here when you need us!
Chris
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