Aa
Acceptance
I have wanted to reach out to all of you for a while-----this is sort of long but hope you can lend an ear if you can.
Some of you know that I have fallen twice on the steps to my sisters house. She became enraged when I told her about the falls. I landed on her mums once and then on some flowers the other time. Well, last night when she let her dogs out she fell down the same steps. She broke something in her ankle.
Instead of trying to reach me in the out building she called her daughter to come get her. Her youngest child came home at 10:30am and asked me to pack a bag for her. That was the first I knew of this. She told him she “didn’t want to come home because there were too many hazards”
A few minutes later
My O.T. came. She mentioned that my medical chart said I have PPMS and then reports tests that were contradictory of that diagnosis. She said, “I am wondering if maybe you don’t have PPMS but have Chronic Inflammatory Disease”. She related further that my obesity, environment, depression and diet could be to blame. Also, people who were sexually abused as children had double the possibility of getting CID. I am totally screwed.
I was very assertive and told her that this topic was a trigger for me. We talked it out.
Then, last week, my general neurologist remarked “you are from California so maybe you don’t have MS…… the sun shines there all the time….you don’t want to have MS anyway”. I didn’t have it in me to fight or tell her that San Francisco typically has fog between the city and the sky.
Which brings me to how I feel. I am not going to have any more medical tests or clinical exams. I am not going to talk to doctors again. I am only going to seek help for my pain.
You know how powerful a womans intuition is right? Well I feel like I am dying. I have had two major surgeries in my life, what I feel is much much much worse than that. Surgery is a breeze. Even though my meds have been tripled I don’t get better, I have days where the pain is less certainly, but the level of disability remains. I know it sounds dramatic and helpless, it’s just a gut feeling.
A dear friend of mine came to me and told me she was dying, she knew, she was gone in 14 months.
In the end it doesn’t matter what it is called, PPMS, CID, or whatever the flavor of the day is. Treatment is the same----pain medicine
Do you guys feel that way too? Am I just a person that isn’t trying hard enough? Am I a hypochondriac?
Some of you know that I have fallen twice on the steps to my sisters house. She became enraged when I told her about the falls. I landed on her mums once and then on some flowers the other time. Well, last night when she let her dogs out she fell down the same steps. She broke something in her ankle.
Instead of trying to reach me in the out building she called her daughter to come get her. Her youngest child came home at 10:30am and asked me to pack a bag for her. That was the first I knew of this. She told him she “didn’t want to come home because there were too many hazards”
A few minutes later
My O.T. came. She mentioned that my medical chart said I have PPMS and then reports tests that were contradictory of that diagnosis. She said, “I am wondering if maybe you don’t have PPMS but have Chronic Inflammatory Disease”. She related further that my obesity, environment, depression and diet could be to blame. Also, people who were sexually abused as children had double the possibility of getting CID. I am totally screwed.
I was very assertive and told her that this topic was a trigger for me. We talked it out.
Then, last week, my general neurologist remarked “you are from California so maybe you don’t have MS…… the sun shines there all the time….you don’t want to have MS anyway”. I didn’t have it in me to fight or tell her that San Francisco typically has fog between the city and the sky.
Which brings me to how I feel. I am not going to have any more medical tests or clinical exams. I am not going to talk to doctors again. I am only going to seek help for my pain.
You know how powerful a womans intuition is right? Well I feel like I am dying. I have had two major surgeries in my life, what I feel is much much much worse than that. Surgery is a breeze. Even though my meds have been tripled I don’t get better, I have days where the pain is less certainly, but the level of disability remains. I know it sounds dramatic and helpless, it’s just a gut feeling.
A dear friend of mine came to me and told me she was dying, she knew, she was gone in 14 months.
In the end it doesn’t matter what it is called, PPMS, CID, or whatever the flavor of the day is. Treatment is the same----pain medicine
Do you guys feel that way too? Am I just a person that isn’t trying hard enough? Am I a hypochondriac?
Hi Red,
I'm sorry to hear you're not doing well and about the BS you're getting from the medical establishment. It's so familiar and so exhausting and demoralizing.
Maybe your sister should consider replacing her steps with a ramp since you have both fallen there. It could help you both remain mobile. If you are not using a cane now, you should!! Canes can help you remain mobile by preventing falls.
I can relate to your feelings that you are dying - I feel like I am dying. My belief is that no one needs a doctor to tell her/him they are dying. We know it when it comes to us.
My nights are my worst time - sometimes forgetting to breathe despite CPAP. Have had horribly vivid snake dreams - always where a single large snake attacks me. Not sure whether the snake represents my disease condition or the AMA (lol!). Some have interpreted an attacking snake in a dream to represent a near death situation which is what I feel it is. Anyway, it is good you have made final preparations, just in case. We'll all go one day and it is good to have made final arrangements so we'll get what we want in the end and relieve others of having to guess at our final wishes.
One more preparation I would suggest to you, as a natural redhead myself, is having permanent eyebrows done if you, like me, were born essentially without visible eyebrows. You have to find someone experienced in doing redheads though. If done well, having permanent eyebrows will uplift you. I certainly didn't want to end up terminal in a hospital or in a mortuary without eyebrows and now I won't!! That brings some peace.
Remember, you're not alone! Good luck to you!
Hugs from WAF
I'm sorry to hear you're not doing well and about the BS you're getting from the medical establishment. It's so familiar and so exhausting and demoralizing.
Maybe your sister should consider replacing her steps with a ramp since you have both fallen there. It could help you both remain mobile. If you are not using a cane now, you should!! Canes can help you remain mobile by preventing falls.
I can relate to your feelings that you are dying - I feel like I am dying. My belief is that no one needs a doctor to tell her/him they are dying. We know it when it comes to us.
My nights are my worst time - sometimes forgetting to breathe despite CPAP. Have had horribly vivid snake dreams - always where a single large snake attacks me. Not sure whether the snake represents my disease condition or the AMA (lol!). Some have interpreted an attacking snake in a dream to represent a near death situation which is what I feel it is. Anyway, it is good you have made final preparations, just in case. We'll all go one day and it is good to have made final arrangements so we'll get what we want in the end and relieve others of having to guess at our final wishes.
One more preparation I would suggest to you, as a natural redhead myself, is having permanent eyebrows done if you, like me, were born essentially without visible eyebrows. You have to find someone experienced in doing redheads though. If done well, having permanent eyebrows will uplift you. I certainly didn't want to end up terminal in a hospital or in a mortuary without eyebrows and now I won't!! That brings some peace.
Remember, you're not alone! Good luck to you!
Hugs from WAF
I was super depressed when I joined the forum. Some probably thought I was down right nuts. I wanted to give up. The truth was I was paralyzed with fear. I was scared to death of becoming dependent on anyone.
A while back I got a will together, with a medical power of attorney. Contacted a MS center to donate my brain and spine. I got really scared when diagnosed looking at all the what ifs. Then I realized my life was going to stink for everyone if I sat around waiting for the other shoe to drop.
I have some really badly disabled friends and they all have something in common. They have accepted their plight and are making the best of it. One is a college professor now in her 70's who was in a bad accident in her youth. She is in horrible pain and sometimes she is in a hospital bed reduced to reading or watching TV but you always want to be around her. Another is a triathlete hit by a car now a quadrapolegic who recently fell out of his wheel chair on the trail and broke his arm. One was a big time cyclist who has ALS and in on a venilator. Then I have met many amazing people with MS far worse than I who do the best they can.
A long time ago some one told me in any situation do not center on what you can't do but what you can. If I am totally laid up I am going to read and if I can't read there are books on CD. I have one thing which so far can take me anywhere I want to go and that is my mind. I can get a book and travel anywhere in time and space.
My disease is speeding up. I do not know what that really means.
I do know I am happy today. I am glad to be here. Even when things a rough.
Hang in there. I will not promise you things will get better but hopefully how you react to them will if that makes any sense.
Alex
A while back I got a will together, with a medical power of attorney. Contacted a MS center to donate my brain and spine. I got really scared when diagnosed looking at all the what ifs. Then I realized my life was going to stink for everyone if I sat around waiting for the other shoe to drop.
I have some really badly disabled friends and they all have something in common. They have accepted their plight and are making the best of it. One is a college professor now in her 70's who was in a bad accident in her youth. She is in horrible pain and sometimes she is in a hospital bed reduced to reading or watching TV but you always want to be around her. Another is a triathlete hit by a car now a quadrapolegic who recently fell out of his wheel chair on the trail and broke his arm. One was a big time cyclist who has ALS and in on a venilator. Then I have met many amazing people with MS far worse than I who do the best they can.
A long time ago some one told me in any situation do not center on what you can't do but what you can. If I am totally laid up I am going to read and if I can't read there are books on CD. I have one thing which so far can take me anywhere I want to go and that is my mind. I can get a book and travel anywhere in time and space.
My disease is speeding up. I do not know what that really means.
I do know I am happy today. I am glad to be here. Even when things a rough.
Hang in there. I will not promise you things will get better but hopefully how you react to them will if that makes any sense.
Alex
It really does help to hear that others sometimes have the same feelings or gut instincts about the end of their lives. It's a double edge sword as I wouldn't want any of you to be taken too soon. Such a foriegn topic to discuss. I have tried to talk about this with two people but they were unable to hear it. Again we have each other and we need to celebrate and laugh together.
It's such a foriegn thing to think about as we only know our life here on earth. I have planned some things in the event of death.
I think the title of this thread 'Acceptance' wraps up some of what is happening now. At this point I am just tired of the battle. I will rest from the battle with the medical system for a while. I have been trying to comandeer this boat and now just need to let go of it.
At some point this current situation will change, something will come to the surface and will be resolved. I need to trust that this is in God's hands. I give it to Him.
When I learned of my sisters fall I felt just horrible for her. She really got hurt and I wish she would have come to me so I could help. I have been able to talk with her via phone, she sounds good and said she felt I already had too much happening physically. I'm taking care of her dogs so that's something.
Thank you Sarah, Deb and all of you who took so much time in responding to me. I appreciate it more than you will ever know.!!!!
love and hugs to all
xxxxxxxxxxxxxxxxxxxxxxxxxxooooooooooooooooo
It's such a foriegn thing to think about as we only know our life here on earth. I have planned some things in the event of death.
I think the title of this thread 'Acceptance' wraps up some of what is happening now. At this point I am just tired of the battle. I will rest from the battle with the medical system for a while. I have been trying to comandeer this boat and now just need to let go of it.
At some point this current situation will change, something will come to the surface and will be resolved. I need to trust that this is in God's hands. I give it to Him.
When I learned of my sisters fall I felt just horrible for her. She really got hurt and I wish she would have come to me so I could help. I have been able to talk with her via phone, she sounds good and said she felt I already had too much happening physically. I'm taking care of her dogs so that's something.
Thank you Sarah, Deb and all of you who took so much time in responding to me. I appreciate it more than you will ever know.!!!!
love and hugs to all
xxxxxxxxxxxxxxxxxxxxxxxxxxooooooooooooooooo
Dearest Red,
I am not sure how I missed this thread and feel I am coming in at the end, when you have been given amazing support and empathy and for once I feel at a bit of a loss what to say to you. As a counsellor I listen to what I am feeling about someone and I feel llike there is a huge space of emptiness. I can really feel your despair and hopelessness and loss of control of everything in your life. Who would not feel so miserable with what you have been through? An alien from outer space? So what you are feeling is normal, but how everyone would deal with this is individual to them.
I think that you have to find your own coping mechanism and that is what you have done as this gives you back some control. You have accepted that the ******** doctors do not seem to be able to give you a diagnosis, and when they did they took it away.
I feel that their lack of respect and understanding for this compassionate, deserving woman is unforgiveable but blaming and getting angry is not going to change or help you. So you have done what helps you and that is to not keep chasing answers from doctors who cannot provide them.thank goodness for your own doctor who does sound like she is completely on your side - keep talking to her and let her know how you are feeling.
Since you started this post I felt you were feeling a little stronger, and I am so glad that you have a team of people coming to the home and hope that this will give you back the feeling that there are caring individuals around.
I have thought about your sister and what happened and am not sure what your thoughts are, but I will have a go at helping you unravel your feelings. I remember when you fell, your sister seemed far more concerned about the flowers and the garden, than the fact that you had hurt yourself and this hurt extended deeply inside you....more than the damaged ankle Now that your sister has done the same thing I am wondering if you are feeling "I told you so...those blessed steps were dangerous." and with this comes a little guilt at feeling this. Drop the guilt, what you went through at that time was tough and you felt abandoned by your family.
Then there is the fact that you were nearby when she fell but were denied the chance of being there for her. So I am sensing that this had just reignited the hurt and brought back feelings from your own fall. After this happened you hit a very low patch I seem to remember (understandably) and I just think this recent failure to involve you, has given you the evidence in your own mind that you have lost your ability to even help your own family.. So let me suggest another perspective....your family love you very much and just did not want to worry you or give you stress and anxiety as they care.
Is anyone able to take you to hospital to see your sister? I think it may help you to try and talk with her and allow you the opportunity to be the sister you want to be.
I cannot provide false hope to you in terms of what you are feeling and your gut instinct that you may not live for long. As some others have said, they also have this feeling and I am one of them. I know the statistics and that they say MS sufferers life expectancy is 5-10 years shorter than average but the reality is that none of us know when our time will be called. I have just made sure that I have put everything in place in terms of my funeral, will and wishes and this has given me peace.
So dear Red, it is OK to be feeling and acnowledging your pain and misery and I thank you from the bottom of my heart for being so honest and sharing this with us all.
Try and take things slowly as others have suggested, just a step at a time. I shall leave you with the following words "true friendship is mirrored in your heart and if you see someone without a smile, give them one of yours". You still have so much to give Red and are so very greatly appreciated by all your friends on this forum.
With love and (((((((hugs)))))))))
Sarah :) xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
I am not sure how I missed this thread and feel I am coming in at the end, when you have been given amazing support and empathy and for once I feel at a bit of a loss what to say to you. As a counsellor I listen to what I am feeling about someone and I feel llike there is a huge space of emptiness. I can really feel your despair and hopelessness and loss of control of everything in your life. Who would not feel so miserable with what you have been through? An alien from outer space? So what you are feeling is normal, but how everyone would deal with this is individual to them.
I think that you have to find your own coping mechanism and that is what you have done as this gives you back some control. You have accepted that the ******** doctors do not seem to be able to give you a diagnosis, and when they did they took it away.
I feel that their lack of respect and understanding for this compassionate, deserving woman is unforgiveable but blaming and getting angry is not going to change or help you. So you have done what helps you and that is to not keep chasing answers from doctors who cannot provide them.thank goodness for your own doctor who does sound like she is completely on your side - keep talking to her and let her know how you are feeling.
Since you started this post I felt you were feeling a little stronger, and I am so glad that you have a team of people coming to the home and hope that this will give you back the feeling that there are caring individuals around.
I have thought about your sister and what happened and am not sure what your thoughts are, but I will have a go at helping you unravel your feelings. I remember when you fell, your sister seemed far more concerned about the flowers and the garden, than the fact that you had hurt yourself and this hurt extended deeply inside you....more than the damaged ankle Now that your sister has done the same thing I am wondering if you are feeling "I told you so...those blessed steps were dangerous." and with this comes a little guilt at feeling this. Drop the guilt, what you went through at that time was tough and you felt abandoned by your family.
Then there is the fact that you were nearby when she fell but were denied the chance of being there for her. So I am sensing that this had just reignited the hurt and brought back feelings from your own fall. After this happened you hit a very low patch I seem to remember (understandably) and I just think this recent failure to involve you, has given you the evidence in your own mind that you have lost your ability to even help your own family.. So let me suggest another perspective....your family love you very much and just did not want to worry you or give you stress and anxiety as they care.
Is anyone able to take you to hospital to see your sister? I think it may help you to try and talk with her and allow you the opportunity to be the sister you want to be.
I cannot provide false hope to you in terms of what you are feeling and your gut instinct that you may not live for long. As some others have said, they also have this feeling and I am one of them. I know the statistics and that they say MS sufferers life expectancy is 5-10 years shorter than average but the reality is that none of us know when our time will be called. I have just made sure that I have put everything in place in terms of my funeral, will and wishes and this has given me peace.
So dear Red, it is OK to be feeling and acnowledging your pain and misery and I thank you from the bottom of my heart for being so honest and sharing this with us all.
Try and take things slowly as others have suggested, just a step at a time. I shall leave you with the following words "true friendship is mirrored in your heart and if you see someone without a smile, give them one of yours". You still have so much to give Red and are so very greatly appreciated by all your friends on this forum.
With love and (((((((hugs)))))))))
Sarah :) xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
so sorry to hear you are going through this rollercoster at the mo
its not right for a neuro to talk to you like that it is bound to make you ask youself weather you are realy sick and not a hypercondriac !!!!
please dont give up hang on in there like others have said it dont matter what the name is. cos its all happening to you!!!!!
sending you hugs
bairdy!!!!
its not right for a neuro to talk to you like that it is bound to make you ask youself weather you are realy sick and not a hypercondriac !!!!
please dont give up hang on in there like others have said it dont matter what the name is. cos its all happening to you!!!!!
sending you hugs
bairdy!!!!
Durn doctors, anyway! I've got one telling me I do and another telling me I don't. I'm just going to do my darndest to live as well as I can.
I'm so sorry you're going through this cr@p! You have us, here, and we're all pulling for you!
Big (((Hugs))),
Lisa
I'm so sorry you're going through this cr@p! You have us, here, and we're all pulling for you!
Big (((Hugs))),
Lisa
I've worried that if my neuroapthy gets worse I probably won't be able to feel the peddles & my judgement/depth perception is terrible! I walked into two things at work Monday! Literally didn't see them! I feel very frustrated & embarrassed. Whatever! You know the next time a doctor tells me that I don't "want" this disease I think I might walk out of their office! Nah, then they try to classify you as having anxiety. It's all BS! I asked the rheumy how she would feel if this was her???
Take care & know you aren't alone!
Nancy
Take care & know you aren't alone!
Nancy
Red, I am sorry things have become that bad for you. The hand controls may not work with the problems you have described with both your hands and wrists. My problem was moving my foot off the pedal. The day I took my sons through a red light nearly killing us all was my last driving day. I had no idea it was MS. I just thought I was a bad driver...My oldest son ran into a gas station and called his father. No keys for me after that...and no I don't drink...lol
While I was approved for SSDI, I have a two year wait period before I can get Medicare. I began receiving SSDI in September. They have said I am eligible in July of this year??? SSDI sure counts differently or uses a new math program. So, I guess I will wait. I would love to have PT but can't bring myself to ask favor again of my husband.
Thank you for responding. I send strength to you my friend.
While I was approved for SSDI, I have a two year wait period before I can get Medicare. I began receiving SSDI in September. They have said I am eligible in July of this year??? SSDI sure counts differently or uses a new math program. So, I guess I will wait. I would love to have PT but can't bring myself to ask favor again of my husband.
Thank you for responding. I send strength to you my friend.
I don't drive anymore. I am home bound. This has been a recent addition for me. I can't feel the pedals and lose my ability to judge distances. There has been talk about using hand controls but it hasn't happed yet. I don't know that it will be the answer. I haven't actually surrendered my license though.
I am home bound with the exception of doctor appointments. I can't shop for groceries or go to a walk-in pharmacy.
My PCP was concerned because of episodes of falling and other private factors.
My medicare pays for this so I don't know what type of insurance you have.
This is called Medical Case Management and they work as a team. It won't be a forever thing. They re-assess every 9 weeks.
I would just ask your PCP for help, make sure you know what you need or want. Let us know what happens OK?
Red
I am home bound with the exception of doctor appointments. I can't shop for groceries or go to a walk-in pharmacy.
My PCP was concerned because of episodes of falling and other private factors.
My medicare pays for this so I don't know what type of insurance you have.
This is called Medical Case Management and they work as a team. It won't be a forever thing. They re-assess every 9 weeks.
I would just ask your PCP for help, make sure you know what you need or want. Let us know what happens OK?
Red
Red, how did you go about getting the team of help to come to your home? I know you have said you drive and I haven't driven in eight years. I know my husband would enjoy the break from running me all over the place. Any ideas on how I might get those services?
Hi everyone, Again thank you for your support. You are all great friends who are faithful and consistent.
I do feel better today, I had a reprieve this morning for about 5 hours. It's back tonight but I am trying to stay on top of it. I hate bringing out the narcotics but maybe I should more often. Instead of abusing them I take half of what I am given each month.
I have a team now that comes to my house; a nurse, O.T., medical social worker and a physical therapist that I haven't met yet. I am blessed to have this team. We are talking about perhaps doing a 'straight cath' to see if there is in fact urine left inside.
Sometimes, when I am battling the pain part I am amazed that the pain can be that bad and that our bodies can do that. I am going to allow myself some narcotics tonight.
As far as the "....you don't want to have MS..." comment, I cut her off before she could finish the sentence, she realized she was being an idiot. I am going to ask my PCP for a referral to a neurologist that isn't a moron.
I want to be here on our support group and be involved with everyone.
I just need a break from the fight. I need to be able to rest from that.
So for now we will just say it---'for now' like Shelly said.
love and hugs to all,
Red
I do feel better today, I had a reprieve this morning for about 5 hours. It's back tonight but I am trying to stay on top of it. I hate bringing out the narcotics but maybe I should more often. Instead of abusing them I take half of what I am given each month.
I have a team now that comes to my house; a nurse, O.T., medical social worker and a physical therapist that I haven't met yet. I am blessed to have this team. We are talking about perhaps doing a 'straight cath' to see if there is in fact urine left inside.
Sometimes, when I am battling the pain part I am amazed that the pain can be that bad and that our bodies can do that. I am going to allow myself some narcotics tonight.
As far as the "....you don't want to have MS..." comment, I cut her off before she could finish the sentence, she realized she was being an idiot. I am going to ask my PCP for a referral to a neurologist that isn't a moron.
I want to be here on our support group and be involved with everyone.
I just need a break from the fight. I need to be able to rest from that.
So for now we will just say it---'for now' like Shelly said.
love and hugs to all,
Red
COMMUNITY LEADER
Hi Red,
How you doing today? I and many others are thinking of you, feel our support and let us help carry you through this time. I know YOU will again find your fighting spirit!!
HUGS...............JJ
How you doing today? I and many others are thinking of you, feel our support and let us help carry you through this time. I know YOU will again find your fighting spirit!!
HUGS...............JJ
That's not the first time I've heard somebody tell me that their neurologist said "You don't want to have MS anyway." What were they thinking? Oh, MS would be such a great disease to have! Whoo-hoo!
I don't think some doctors understand that debilitating symptoms and lack of a diagnosis is enough to cause stress and anxiety. There's definitely a dearth of empathy.
I don't think some doctors understand that debilitating symptoms and lack of a diagnosis is enough to cause stress and anxiety. There's definitely a dearth of empathy.
Just wondering: How much schooling and real-world experience does the average physician receive in how to treat people, how to deal with people, how to interact with them as fellow human beings? I remember the phrase "bedside manner." If you have all the technical knowledge in the world, you're still a crappy doctor if you make your patients feel like crap! Grrrrrrrrrrr............
Red, listen to JJ & Shelly; these ladies seem to know whereof they speak.
Red, listen to JJ & Shelly; these ladies seem to know whereof they speak.
I for one will not let you give in to this. I will certainly let you have this moment and it's totally understandable. Regardless of what causes us to give up we all do so from time-to-time. For me, it doesn't always stick.
When I throw my hands in the air and say I give, it's only because I've exhausted everything in my power to change the situation. Sounds to me this is the exact place you have landed as well. All you've done to hold on to hope is depleted..............for now.
For now, Red. It's just for now. Later, when you get a glimmer of hope or the possibility of a better outcome - that is when you'll feel us picking you back up from this fall and cheering you on all the way.
Letting you have your time you need darling but we've got your back when it's time to move foward.
(((xoxoxo)))
shelly
When I throw my hands in the air and say I give, it's only because I've exhausted everything in my power to change the situation. Sounds to me this is the exact place you have landed as well. All you've done to hold on to hope is depleted..............for now.
For now, Red. It's just for now. Later, when you get a glimmer of hope or the possibility of a better outcome - that is when you'll feel us picking you back up from this fall and cheering you on all the way.
Letting you have your time you need darling but we've got your back when it's time to move foward.
(((xoxoxo)))
shelly
What you're experiencing is all part of a phase of what most people go through on their way to acceptance. I found it interesting that is what you titled your post. I think in the back of your mind, that is what you're thinking, too.
I had that same thought--that I was going to die within the near future, too, when I was undiagnosed and being told I had this or that. I was even referred to a psychiatrist one time. I jokingly told my friends that I wanted on my tombstone, "I told you that I was sick and wasn't crazy."
I think if a person is going through what you're going through--pain, loss of ability, mobility, etc. you're going to feel a whole of emotions. I don't know exactly all your feelings, but for me during this stage of diagnosis, I had a whole bunch of feelings going on. I was angry that nothing was being done, shocked that I was experiencing what I was, upset that I wasn't getting much help (medical and the people around me), unvalidated, and had a lot of fear about the future.
With a PPMS diagnosis, I am sure that your feelings are magnified by the millionth degree. There's no real medicine that will slow the disease down, and I would imagine that you're not feeling that positive of ever having real pain relief. My sister has a more progressive disease course and about ten-fold the pain that I experience. There's nothing, in my opinion, that sends a person into despair faster than chronic, every day, excruitiating pain, with no relief in sight.
I think one thing that would help is to find a neurologist that you can really trust. Not having someone you trust really doesn't help. Plus, your OT, although trying to be helpful, is not very professional--don't listen to what she's saying (lend a deaf ear). She's not a doctor and hasn't the experience and expertise to give her opinion about something that is very important. She also hasn't seen the whole picture of your complete medical history, MRIs, exams, etc. etc. She should have respect for you having just been diagnosed with a disease that is frankly hard to accept.
Warm regards,
Deb
I had that same thought--that I was going to die within the near future, too, when I was undiagnosed and being told I had this or that. I was even referred to a psychiatrist one time. I jokingly told my friends that I wanted on my tombstone, "I told you that I was sick and wasn't crazy."
I think if a person is going through what you're going through--pain, loss of ability, mobility, etc. you're going to feel a whole of emotions. I don't know exactly all your feelings, but for me during this stage of diagnosis, I had a whole bunch of feelings going on. I was angry that nothing was being done, shocked that I was experiencing what I was, upset that I wasn't getting much help (medical and the people around me), unvalidated, and had a lot of fear about the future.
With a PPMS diagnosis, I am sure that your feelings are magnified by the millionth degree. There's no real medicine that will slow the disease down, and I would imagine that you're not feeling that positive of ever having real pain relief. My sister has a more progressive disease course and about ten-fold the pain that I experience. There's nothing, in my opinion, that sends a person into despair faster than chronic, every day, excruitiating pain, with no relief in sight.
I think one thing that would help is to find a neurologist that you can really trust. Not having someone you trust really doesn't help. Plus, your OT, although trying to be helpful, is not very professional--don't listen to what she's saying (lend a deaf ear). She's not a doctor and hasn't the experience and expertise to give her opinion about something that is very important. She also hasn't seen the whole picture of your complete medical history, MRIs, exams, etc. etc. She should have respect for you having just been diagnosed with a disease that is frankly hard to accept.
Warm regards,
Deb
Sorry for your & your sister's falling. I fall a lot too & know how that is. I also know about the doctors & how frustrating they can be!
Hang in there!!!
Hugs,
Nancy
Hang in there!!!
Hugs,
Nancy
Hello Red,
Doctor's make me sick! I live in Florida, for crying out loud. I just wanted to let you know that I was speaking to my spouse about 30 minutes before I logged on. I read your forum, and I am going to try & encourage you by telling you that yes, you are fighting for your life, sweetie. Don't you dare give up on any Doc, negative comment, & especially yourself. You can & you will, beat this, and be a testimony to others as well.
This is the exact thing I was speaking to my husband about,-so I wanted to share this with you.
You've labored, but it's not in vain.
Be blessed,
Doctor's make me sick! I live in Florida, for crying out loud. I just wanted to let you know that I was speaking to my spouse about 30 minutes before I logged on. I read your forum, and I am going to try & encourage you by telling you that yes, you are fighting for your life, sweetie. Don't you dare give up on any Doc, negative comment, & especially yourself. You can & you will, beat this, and be a testimony to others as well.
This is the exact thing I was speaking to my husband about,-so I wanted to share this with you.
You've labored, but it's not in vain.
Be blessed,
What a time you've been having-- My goodness! I'm just so sorry for everything that's been making life harder than it has to be. Sending support(and flicking off your neuro),
Sadie
Sadie
Red-
I just want you to know how helpful you have been to me and others in the past. When you talked about your intuition, it broke my heart. I know very well how tough it is to even get up day after day especially in pain.
The Dr who said those insensitive/stupid things shouldn't be in the medical field. Unfortunately, there are way too many Dr's out there who have no sensitivity or common sense. I just want to say that I lived in Greece for quite a while as a teen and I still got MS. What now??
I am going to pray for you to feel better both physically and mentally. It makes me so sad to hear such dispair. Please hang in there. We are all here for you to vent if you need to.
Hugs and much support-
Kristi
I just want you to know how helpful you have been to me and others in the past. When you talked about your intuition, it broke my heart. I know very well how tough it is to even get up day after day especially in pain.
The Dr who said those insensitive/stupid things shouldn't be in the medical field. Unfortunately, there are way too many Dr's out there who have no sensitivity or common sense. I just want to say that I lived in Greece for quite a while as a teen and I still got MS. What now??
I am going to pray for you to feel better both physically and mentally. It makes me so sad to hear such dispair. Please hang in there. We are all here for you to vent if you need to.
Hugs and much support-
Kristi
wiggles I think our posts were so close together that I missed yours. This particular OT is very different. I don't know her so reading her non-verbals was next to impossible. She was truly trying to help, she opened her mouth and landed in a Quagmire.
The Sun thing was a stupid thing to say. My personal favorite quote of that day was "you don't want to have MS".
The Sun thing was a stupid thing to say. My personal favorite quote of that day was "you don't want to have MS".
COMMUNITY LEADER
Red my dear friend,
Pain will wear even the best of us down, with or with out a dx, pain is one of those insidious conditions that will eat away at you, until there isn't enough left. You do sound overwhelmed by so so much, supidity from dr's and others is only one type of problem in a long long line.
I could tell you to stand tall etc etc but i dont think thats going to be of much help, and help is what you need! Am I reading more than clearly said, with your sister injured are you feeling more helpless, and even more depressed, was her calling her youngest instead of you who was closer, the final tether broken? Only you can peice your thoughts together, to see how you found your self in the mindset of lost hope. I wish i could give you a hug and tell you tomorrow will be brighter, it can be but isn't likely if you dont get the help you need.
Just how bad is your state of mind? Dont tell me, tell your self, if its as bad as i suspect, please focus your attention on changing that one thing, nothing else, just one step at a time. Call who ever you have to, do you have a therapist? What drugs are you taking, in what combination is there something that can be tweeked, is there any chance the drugs are eating away at your mental health, if you dont know find out. Many drugs that are rx for neuropathic pain are SSR's, atypical and anti psychotic's, if your on any of these type of drugs then they can throw your mental health state out of whack.
Sorry but this is not the time to give dr's a wide berth, you need to see someone asap, your mental health is important, it doesn't matter in the long run if you do see a psychiatrist to get you through this, WHAT EVER IT TAKES!
HUGS...................JJ
Ps dont be silent, we are here!
Pain will wear even the best of us down, with or with out a dx, pain is one of those insidious conditions that will eat away at you, until there isn't enough left. You do sound overwhelmed by so so much, supidity from dr's and others is only one type of problem in a long long line.
I could tell you to stand tall etc etc but i dont think thats going to be of much help, and help is what you need! Am I reading more than clearly said, with your sister injured are you feeling more helpless, and even more depressed, was her calling her youngest instead of you who was closer, the final tether broken? Only you can peice your thoughts together, to see how you found your self in the mindset of lost hope. I wish i could give you a hug and tell you tomorrow will be brighter, it can be but isn't likely if you dont get the help you need.
Just how bad is your state of mind? Dont tell me, tell your self, if its as bad as i suspect, please focus your attention on changing that one thing, nothing else, just one step at a time. Call who ever you have to, do you have a therapist? What drugs are you taking, in what combination is there something that can be tweeked, is there any chance the drugs are eating away at your mental health, if you dont know find out. Many drugs that are rx for neuropathic pain are SSR's, atypical and anti psychotic's, if your on any of these type of drugs then they can throw your mental health state out of whack.
Sorry but this is not the time to give dr's a wide berth, you need to see someone asap, your mental health is important, it doesn't matter in the long run if you do see a psychiatrist to get you through this, WHAT EVER IT TAKES!
HUGS...................JJ
Ps dont be silent, we are here!
Thank you so much Audrey, I do know that all of us are dying. Thank you for reminding me about the fact that we are all dying and that from the moment of birth you are dying.
I have the same thoughts about not living as long as my parents did. Like yours, neither of them experienced what I have or am going through right now.
I want to sort of 'let go' of this situation, I don't have control over it. I have attempted to steer this monster and now need to let it be. At some point it will get worked out, probably without my help.
I will continue to be here, this is my home and I want to support everyone here. There will be times that I am very discouraged and not handling my pain very well. But like I say, we are all in this together!
Red
I have the same thoughts about not living as long as my parents did. Like yours, neither of them experienced what I have or am going through right now.
I want to sort of 'let go' of this situation, I don't have control over it. I have attempted to steer this monster and now need to let it be. At some point it will get worked out, probably without my help.
I will continue to be here, this is my home and I want to support everyone here. There will be times that I am very discouraged and not handling my pain very well. But like I say, we are all in this together!
Red
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
