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?
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
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