Hi All, hope everyone is having a good day. I have a drs appointment tomorrow. She has been the first person who has really listened and tried to understand what living with a chronic illness has done to me. I am feeling good now. But have had so many bad experiences along the way. Including getting a lecture while strapped to a table for a tilt test. “why aren’t you exercising” “quit smoking - you want to live a long life right?” obviously I know the dangers - probably more than most. I am not asking for some one to say “smoke up!!” but up until two weeks ago I was not to quick to jump out of the way of a speeding train. And as a matter of fact with my new feeling - I plan to start back to exercising next week and I hope to eliminate the cancer sticks right after the new year. ( I have had two really miserable christmas’s - not going to try now. But have cut back very significantly)
People with good health just don’t get what this does to your mindset - I wasn’t going to “end it” but I was certainly speeding up the process. I am hoping you will respond so I can share your responses with her. You can answer either way. I may find I am alone in my thinking or I may find others can totally relate.
Here is the question: if I could give you a pill - and you could feel perfectly healthy for 5 years but then done - dead. Or I could give you a pill that guarantees you will live another 50 years but you will never feel better than you do right at this minute. Which would you chose?
I hope this isn’t too morbid a question. And again feeling good has changed my goals. But here was a dr who admitted he knew really nothing about chiari and it’s effects. He has only seen me for these few minutes and he thinks he needs to tell me I should work at living a really long life feeling like sh–!! Is he crazy!!! Has he ever had the flu for two years? What is his longest chronic illness HE has ever experienced. Sorry but after the last few years I feel dr kavokian was truly misunderstood.
Me being the eternal “Barney”, (as my family calls me because they say if I ever had my finger cut off I’d only reply "that’s ok I’m lucky I have 9 more!) I’d choose the long life pill (my good days make it worthwhile!) I too smoke when I have migraines(I can’t take pain meds due to allergies to them(for that reason I can’t take them for any kind of pain even my decompression surgery, c5-6 fusion, and knee surgery(I only got Tylenol and benedryl to help me sleep it off)I also use meditation and biofeedback. I know that they are bad for me but they help me cope with the pain!
Barb
If it were not for my intense fear of death I'd probably go with the 5 years. It could also be because I've had chronic mono for 3 years so basically I feel everyday like you do when you are coming down with the flu...sore throat, swollen nodes, body aches. I am just so used to it I don't even remember what normal is...I guess I've reached the acceptance stage. Had you asked two years ago I'd probably would have jumped at the 5 years and I can totally understand why someone would.
When my aunt was dying of terminal lung cancer the doctor was yelling about making her quit smoking. She was already under hospice care. Finally the family told him that smoking was the only she enjoyed that she could still do and to leave her alone about it!
I promise I will not send anyone the Crisis Hotline Number........hahahahahaha...I still feel so stupid. I don't need it either by the way.....For those of you that don't know...I gave one of our Moderators the Crisis Hotline # by mistake. So yes that is my blooper for this year. :-)
Tracy
PS: but ....if anyone needs it...It is located on the Main page left side & down a little.
When I started counseling a year and a half ago I told my counselor I would not be going anywhere before my youngest turns 18... after that.... who knows. ;)
I won't be needing a crisis number for about 13.5 more years. lol
I have my kids to think of, but in 5yrs they will be 19&20 so even though i would love more time with my beautiful family...I would definately go for the pill for five yrs then be done. I have days now how I dont know how I will make it to the next day. I just try and enjoy the good days and treasure every minute while it lasts.
I would rather have 5 years of wonderful, than 50 more years with this pain and anguish. Besides that, can you imagine the doctors you would go through in that amount of time?!
It breaks my heart that I would choose the 5 years. I want so badly to be the person that would choose 50 years but it is not my reality. Any given day I find myself fighting back a quick prayer for it to be over. I have a daughter,husband, and amazing family to live for but sometimes I feel that I am the worst version of myself. I hate it but I’m fighting. I do feel like a chiari warrior and I love having all of you that understand. I used to smoke like 2packs a day. I loved smoking but I stopped for my daughter and the obvious reasons. I smoked for 16 years. I finally stopped when I started using the electronic cigs. I started at the highest nicotine level then worked my way down to 0. Highly recommend it. You can try tons of flavors and the hand habit is still there so that helps…
I quick smoking back in August due to bi-lateral pneumonia, but still craved smoking after an 18yr habit. The electronic cigs worked great for both my cravings and sanity. (:
I have a cousin who committed suicide after years of suffering with MS. I never understood why she would do that. Now I do. I don't think I could ever do that to my mother, but I can definitely understand it. I was actually so bad over the weekend that i had a migraine on top of my migraine and had my first Chiari puke. That morning I prayed to just have it over and let the pain end. I smoke too...and ya know what...I don't give a rats arse. That and my coffee, lots and lots of coffee, make me feel just a little bit better in my world filled with pain and discomfort. My doctor even told me to keep smoking for now, that the stress of trying to quit would probably be enough to push me over the edge. No ladies...I don't kneed the hotline number :-) But heck yeah! I would take five good years and be done than to have to go through 50 more years of this crap!
I feel like a goofball! I didn't even look at the date on the posting. :(
SparkyID7 said:
I would rather have 5 years of wonderful, than 50 more years with this pain and anguish. Besides that, can you imagine the doctors you would go through in that amount of time?!
I want to share an unbelievably selfless painfully true story with you first though.....
Everyone that knows me personally knows my barely 20 year old daughter is my heart and soul. I became ill on 7/10/2001. She was barely 8 years old. On many, many days I would get up and get her ready & to school just to go home and set my alarm just in time to pick her up in the afternoon. She has seen me through hell and back to many times to count. The best part she is a remarkable young woman that I haven't scarred to bad and actually did a great job raising well even when I could breathe I was hurting so badly. All my dr's love her and have watched her grow up and are personally vested in her future and cheer her on and always ask about her first, if she isn't with me & they talk for an hour if she is. I couldn't ask for a better daughter in anyway. She loves me more than I could ever deserve.
A few years ago I had been really struggling and she had been with me to some new dr. and the dr. looked at me as many has over the years and asked me if I was suicidal? I always gave them the same answer......absolutely not.....How could I be..... I have a daughter that needs me and I would never hurt her....then I would tell them to always know there are worse things than death.
A few weeks later my daughter and I are in the living room and my Daughter is very serious and I could tell she wanted to talk about something...and she told me......If there ever comes a time I can't take it anymore she will understand and know I did the absolute best anyone could have done in my situation. That she would always miss me but would celebrate my spirit and love and always know I Loved her and would understand.
What can you say when your child says that to you? She wasn't saying it out of guilt just as I wasn't to that dr. She was saying it out of love. A selfless love that she says I have always taught her by example. She is very wise beyond her age. and I know she meant what she said.
So do I know how to construct a noose? No....but I have come through some pretty dark times and probably will again. I am not afraid of death. I think my CM & C Spine surgical experience changed my whole perception and relationship with mortality. I think death is something to be respected not feared. Maybe we have just met too often and have a mutual understanding. Not that I am suicidal or want to die. I just accept life in this body is not eternal. Pain is not eternal. Love though is Eternal and will keep my heart beating every second possible. Love is stronger than the worst of pain.
I will share about the NL tomorrow, but boy oh boy it raised my BP and made me think every swear word I could hear my Grandmother in my mind telling me not to say to the Dr. office that made my hospital follow up appt. then cancelled it because no one knew anything about CM's. It seems my NL had to retire for emergency health reasons and 30 other NL are stupid. Yeah.......You know that hit me like someone chucking a rock between my eyes.
Alright Tracy...I'm bawling now :( I woke up in pain this morning, so I was already a little emotional.
It is so wonderful that your daughter is so unshelfish and truely understands everything you have gone thru physically and emotionally. You did raise her well! Sorry to hear you have to take a ride on the doctor roller coaster again. I hope you find a great doctor!
Good Luck!!
Sparky
TracyZ said:
Today has been another NL day from hades.
I want to share an unbelievably selfless painfully true story with you first though.....
Everyone that knows me personally knows my barely 20 year old daughter is my heart and soul. I became ill on 7/10/2001. She was barely 8 years old. On many, many days I would get up and get her ready & to school just to go home and set my alarm just in time to pick her up in the afternoon. She has seen me through hell and back to many times to count. The best part she is a remarkable young woman that I haven't scarred to bad and actually did a great job raising well even when I could breathe I was hurting so badly. All my dr's love her and have watched her grow up and are personally vested in her future and cheer her on and always ask about her first, if she isn't with me & they talk for an hour if she is. I couldn't ask for a better daughter in anyway. She loves me more than I could ever deserve.
A few years ago I had been really struggling and she had been with me to some new dr. and the dr. looked at me as many has over the years and asked me if I was suicidal? I always gave them the same answer......absolutely not.....How could I be..... I have a daughter that needs me and I would never hurt her....then I would tell them to always know there are worse things than death.
A few weeks later my daughter and I are in the living room and my Daughter is very serious and I could tell she wanted to talk about something...and she told me......If there ever comes a time I can't take it anymore she will understand and know I did the absolute best anyone could have done in my situation. That she would always miss me but would celebrate my spirit and love and always know I Loved her and would understand.
What can you say when your child says that to you? She wasn't saying it out of guilt just as I wasn't to that dr. She was saying it out of love. A selfless love that she says I have always taught her by example. She is very wise beyond her age. and I know she meant what she said.
So do I know how to construct a noose? No....but I have come through some pretty dark times and probably will again. I am not afraid of death. I think my CM & C Spine surgical experience changed my whole perception and relationship with mortality. I think death is something to be respected not feared. Maybe we have just met too often and have a mutual understanding. Not that I am suicidal or want to die. I just accept life in this body is not eternal. Pain is not eternal. Love though is Eternal and will keep my heart beating every second possible. Love is stronger than the worst of pain.
I will share about the NL tomorrow, but boy oh boy it raised my BP and made me think every swear word I could hear my Grandmother in my mind telling me not to say to the Dr. office that made my hospital follow up appt. then cancelled it because no one knew anything about CM's. It seems my NL had to retire for emergency health reasons and 30 other NL are stupid. Yeah.......You know that hit me like someone chucking a rock between my eyes.
Very well said Beeba....I also think it's important for everyone to remember we aren't going anywhere. You will all chime in ...I am not perfect, but if you message me or any active Moderator ....We will be there for you as long as you need us. We are not health care specialists , but I know a few that are actually Chiarians and Members that are a message away also. Just have faith....if not found anywhere else....in God and yourself,,,,and other Chiarians that understand.......and as a Forum joke I will list the Crisis # in case all else fails... 1-800-273-TALK.
I also agree a new day brings renewed hope. so no matter what everyone hold on....
Sparky...I didn't mean to make you cry. I think you are wonderful. This Journey has honestly changed my life no matter how negative and dark at times, I am a much better person because of the Journey. I will NEVER Choke the words out or even think CM has been a good experience, but the Journey has been a Godsend for me personally. Strange but true. Unexplainable but true. Would I twitch my nose & make me well again....I don't know at this point. My life is so rich even though I have bad physical and mental moments, but would I give you all up and everything I do and learn...Never. Maybe I do need some white coat friends???? :-)
Wow. It’s amazing to see other people have come to terms with CM. I’ve felt alone the entire way with many friends and family helping me deeply along the way. I don’t think I’ve learnt how to deal with CM yet. I just try and pretend it isn’t actually there and I’m fine. The dark days you speak of get me when I least expect it. I just want to be normal…I want a cold to be awful and a bug to be bad, but I just can’t find sympathy in those with a minor illness. The awareness in England is rubbish. Even med students I speak to haven’t heard of it!! I feel like its made me a better person too, but I’d of hoped I would have got there anyway! I just battle with the want of feeling normal and the idea that I could just ease the pain…
I so understand !! Especially about having empathy for people that complain of minor or acute illnesses. A cold or bug can put us in bed for weeks. The dark days do hit unexpectedly and can be set off by almost anything. I am about to post an article I wrote about the UK. I hope you understand and approve. I have close friends that live in the UK. The problem with educated Medical Providers is international. I promise. It is so great to meet you and have you as a new friend. You might also like the Woman to Woman Group. It's pretty cool and we are very honest on there. I Love it. Please keep coming back. what some do and have said that people get better or cope better and don't need forums like this. I can never imagine not needing other Chiarians. Even if I magically woke up out of chronic pain.