woke up and had to use my cane and walker

[cmetryme]

hello everyone! this is my first vent.
I woke up yesterday morning screaming in pain as usual. level 7/8/9.
my legs hurt so bad that i was crying most of the day. my wife went to work crying worried sick im have to continue on the walker. it's got to be so hard on her. sometimes i feel im hurting her more than the pain im feeling. she had my son come over three times to check on me during the day.
yesterday was one of those days that i asked god to take me so this pain for me and my family can end. i cant take my own life as im to afraid to do so. i have no plan in place to do so.
just wishing it was all over. im tried of crying,pacing and screaming. i dont look forward to waking up any day. i know when i go to bed im going to wake up screaming in pain and have to deal with this all over again. i hope none of you ever have to go thru the pain levels i go thru each and everyday. i had one low pain day in 68 days. now im on 30 plus days as i haven't looked at my log book to count yet.

this forum and all you nice folks give me hope that one day i will help someone here and god will then take me as i have done what i was put on this earth to do. i have been told many times that in my past lives ive been a healer. sometimes i find that hard to believe as if that were true i would know how to stop this pain and suffering im putting my family through.

im glad to have my family of support both at home and here on this forum.

thats my vent. i hope it wasn't to scary to post here. may you all find love and support.

 

[PythonPlay3]

Hi- don't feel bad about venting - we all here "get it"! LOL
I absolutely hear you about wanting it to end. I have vented that many times here. I would never actually do that today- I believe in God. Although years ago, I did try twice. Nothing like adding 2 failed suicide to your misery. I am just going to toss out some questions - are you on medication, do you have a regular doc you see? Do you have additional health issues, depression, vitamin deficiencies, etc that add to your pain? and you know some days with all the pain meds I am on, doesn't touch the pain. I have thought MANY times that living for another 5, 10, or 20 yrs is too much. I have felt like a burden many times to my family, my husband tries to understand, but I still don't think he gets it.

So please vent here where everyone will totally "get" you; the people here are great support! SOFT hugs to you !

 

[cmetryme]

PythonPlay3, thanks for caring and i do think you folks need answers to those questions to understand why i do try to help as many as i can here.

your questions:

Are you on medication?
Yes. im on very high doses of meds like gabby, muscle relaxers,thyroid med, Morphine and cancer med called subsys that can kill me on any dose i take at any time. my wife and i have come to terms on these meds and feel if they help take them. if it kills me then im out of pain.

Do you have a regular doc you see?
Yes, rheumatologist,neurologist,pain mgt, lupus specialist,cardiologist,allergist and of course a worthless GP for colds and flu.

Do you have additional health issues?
Fibro, lupus.small fiber neuropathy,arthritis in my neck and lower back(2 places) and now spasticity(muscles jerking uncontrollably). my left eye i have developed a cataract due to lyrica according to my GP and Eye doctor. can't have surgery due to they need to dilate the eye and i must be awake to have that. what do they dilate with? Epinephrine!
metal reactions to all metals. stainless is my worst reaction as it will drain all my energy and then make me pass out.
Trips to the grocery store, doctors offices and ER rooms are a living hell for me. no help with this and no one seams to have heard of it.

Allergies to most preservatives in meds, epinephrine if i get this ,in ER my heart will just explode,all the canes like lidocane, the lupus meds and my list is one page long of the drugs. some food allergies. most over the counter meds like thermaflu,benadyrl. and if i do have a allergic reaction i cant have an epypen.

depression? no i have not had this. no meds for this either.

Anxiety? yes lots of this and it will raise my BP so high the doctors think im having a heart attack. it ends up being a panic attack.

vitamin deficiencies ,etc that add to your pain?
ive had every organ in my body checked and every blood test you can imagine to the tune of $100k. all is well. As my neurologist told my wife and i "you are the healthiest person in this room as neither of us has had everything checked out like you have. you are very healthy and have nothing that will kill you. with that said your have 5 of the most painful things a person can have. the only treatment for these are very strong pain meds" stick with pain mgt. i was told by my cardiologist and a natural doctor(after she refunded my money for my visit) said the same thing about pain mgt. my only choice is the meds that can kill me at anytime.

You folks have lots of choices, please make informed decisions about your next med and visit with your doctor. you have a say in your treatment plan.

may you all have many low pain days ahead of you!

 

[PythonPlay3]

Hi again,
Well it sounds like you are doing what you can. The allergy issues are definitely NOT helping anything. I am also told I am a very healthy person in the sense that I have not major medical issue. As you said, I have been worked up so much I am sure I have nothing that will kill me. Some days that is not a comfort! (LOL)
But we need to hang in there and do the best we can. Take each day one at a time. When you have good days, really try to give your wife a lot of attention, your kids as well. Try to NOT overdue yourself on good days. I find that if I spend a lot of my good days’ time with my hubby, then on the bad days it isn’t so bad. I try to even just sit in the same room on bad days that way we can feel “together”. On bad days when I need to be in bed, he brings his computer up to bed and I sleep, he plays his games. But again we are together.
I don’t know if that would work in your situation but the fact is, your illness is here to stay. Have you read the story “Spoons”? Google the spoon theory. You will come to a site that is “but you don’t look sick” dot com. Read the story there on how to understand and explain how your bad days are. I found this by someone else posting it here quite a while ago. I have had many read this to help them understand.
As for feeling like a burden, I have found that is mostly our feels but not necessarily their point of view. My hubby knows that when I am sick, I am sick. But as I said, on the good days I really spend a lot of attention to him. Do little things together so that it keeps us close.
I do not know why I have this, but I do. I am not dying any time soon, so I have to do my best to live each day. I have faith that for whatever reason this is my life, it is what it is. I think is really helps me to “love” each good day. Take nothing for granted on those good days. And roll with the bad ones, yes even those that mean our walkers and the shower chairs come out.

 

[Forgetmenot]

We all have days we want the torture to end.my pain have gone up as I am facing putting my lovely collie down and my dad may have to be sectioned because he had a nervous breakdown . I pray your will at lest have a few days that the pain leaves you alone and give u reason to keep going. Chin up lovey big hugs

 

[PythonPlay3]

Oh yes, stress will set it off! I am sorry to hear about your current stresses Forgetmenot, I hope things turn out ok for your dad. That is really a tough one. My Aunt was sectioned after a bad breakdown too. It is hard. Hug and prayers to you.

 

[cmetryme]

thanks so much for taking the time to read and post here. im so sorry to hear about your collie and your dad. i know how it hurts.
well i did have 1 1/2 days of low pain 1/2. yeah! then back to level 5/6 arm hand shoulder fingers throbbing numb pain again. my wife is out of state and could not enjoy it with me. i did get to tell her over the phone and that helped some what. it's to bad shenhad to see those 79 bad days and miss out on the one good day. this is the hand that god dealt me and i have no choice but to play on and not fold as may times i wish i could. thanks for your support!
bug hugs to you both.

 

[Loftpat]

I don't recall if you have tried guided meditation or mindfulness meditation to help get you through the rough times, cmetryme. If you don't, I highly recommend the practice. I been practicing everyday and especially notice how much it helps during the flares. The stress caused by constant pain only serves to intensify the pain. Hope you are feeling better.

 

[cmetryme]

loftpat, thanks for caring.

maybe 3-4 years ago a senior person gave me a CD on mediation and breathing Technics. i have used that CD three times and learned how to breath throw the pain. i was not aware it was mindfulness mediation. which i see it is now. i try to do it when i can. the breathing helps reduce the pain level some. i cant always get into the meditative state due to the high levels of pain. so i just do the breathing exercises.

i wanted to get hypnotized for pain relief and my hypnotist told me that my pain levels and the 5 things i have it will not work for me.
he told me right up front and said i dont want to take your money as it wont work. well it worked great on quitting smoking. i smoked for 42 yrs. i had it back in 2013.

im looking in to astrological travel next. maybe i can get into that state of mind and leave my body when the pain is really bad.
i have doubts as i can make it into that state.

you know i asked my PM doctor if i could see if MMJ would help me with the pain. i told her the CBD lotion and salve/balm is working great.
she told me she does not believe that it will work as there is nothing proving it works.

I asked her if she researched it or had any experience with it. she said no. i told her my wife and her sister a holistic want me to go to AZ to try it.
I just want to try it. if it works we will move there.

She said if you do you will have to come off all the drugs your on first. i dont recommend doing that either. i said i just want to see if it works not quit everything. her response was "if you do, your on your own".

So now i have to decide what to do next. im tired of the level 7/8/9 pain everyday and the chance i might die from the meds. ive had 4 straight nightsthis week of feeling that my lung has collapsed. so i do need off the med that can kill me. but i just keep taking it. i get at least 2 hours relief sometimes.
2 hrs is better than no hours. thank god my wife is out of town this week.

once again thanks for reading and please make informed decisions about your doctor and the meds you take.