I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: gothiclovemonkey on April 16, 2014, 10:23:03 AM
-
Have you ever had that happen? its absolutely strange.
I am on top of the world as far as my life goes, really I am. I have a wonderful husband, and son (even though right now my son seems to be experiencing pms?? either that or hes lost his mind...) But I AM happy, in fact i have never been this happy. I find myself smiling so much my face hurts lol
but then you factor in my recent health... and current health... and im freakin miserable. I feel like pure crap. i ache all over from the damn RA with the weather being silly. my right arm (my dominant arm, mind you) just got a graft.that hurts like a sob. i dont think the fistula hurt that badly! i find myself using the arm, then yelling out in pain, because im a dumb dumb, why cant i think before i move the darn thing??? its so bruised and the pain meds are making me sooo sick to my tummy i can barely think straight. i still have my left fistula, but its causing trouble, so its painful right now too. plus the damn muscle cramps throught the whole body every single day, worse at dialysis. and they still wont listen to a word i say. smh
im so tired of hurting. and like i said, if i take the pain meds, i feel really pukey. so whats a girl to do?
on top of all that, im up for review with tx.... I KNOW i deserve to be kicked off the list, so im preparing for that. hoping they will take me back when i get my act together though.
i cant really imagine my life without illness, but i do imagine that my face would hurt a lot worse right now LOL because those guys sure put a smile on my face, even when i feel like death has ran me over with a semi with spiked tires
how long can i expect my arm to hurt so badly?? its a looped graft. in my mid arm area (bewtween wrist and elbow, closer to elbow bend) He tried for a fistula but my veins suck so he had to do a looped graft.
-
Not sure about fistula/graft pain, I think it varies a lot.
But I would like to say I think us dilly-dally people are sometimes quite hard on ourselves and try to prove we are coping
and superwoman/superman at the same time. Be gentle with yourself some of the time. Give in to tiredness and nap when you can.
Accept offers of help.
And no you don't have to smile all of the time (Permission granted to grimace!) :cuddle;
-
Have you ever had that happen? its absolutely strange.
I am on top of the world as far as my life goes, really I am. I have a wonderful husband, and son (even though right now my son seems to be experiencing pms?? either that or hes lost his mind...) But I AM happy, in fact i have never been this happy. I find myself smiling so much my face hurts lol
but then you factor in my recent health... and current health... and im freakin miserable. I feel like pure crap. i ache all over from the damn RA with the weather being silly. my right arm (my dominant arm, mind you) just got a graft.that hurts like a sob. i dont think the fistula hurt that badly! i find myself using the arm, then yelling out in pain, because im a dumb dumb, why cant i think before i move the darn thing??? its so bruised and the pain meds are making me sooo sick to my tummy i can barely think straight. i still have my left fistula, but its causing trouble, so its painful right now too. plus the damn muscle cramps throught the whole body every single day, worse at dialysis. and they still wont listen to a word i say. smh
im so tired of hurting. and like i said, if i take the pain meds, i feel really pukey. so whats a girl to do?
on top of all that, im up for review with tx.... I KNOW i deserve to be kicked off the list, so im preparing for that. hoping they will take me back when i get my act together though.
i cant really imagine my life without illness, but i do imagine that my face would hurt a lot worse right now LOL because those guys sure put a smile on my face, even when i feel like death has ran me over with a semi with spiked tires
how long can i expect my arm to hurt so badly?? its a looped graft. in my mid arm area (bewtween wrist and elbow, closer to elbow bend) He tried for a fistula but my veins suck so he had to do a looped graft.
Hi gothiclovemonkey ,
Can't say I've ever experienced pain as you describe,yet there have times that were lip-biters.
Have used one or another of three techniques that have assisted my sissy fear of pain and needles.
All are ridiculous methods that defy any explanation of why they work, at least for me.
One, is write your self a letter (don't mail it though) rant in it, cuss in it, all toward the pain. Give yourself permission to feel as you do and forgive yourself for feeling as you do. Read it when done . Now gently tear it into little bits. :laugh:
Two, was using a recorder and yelling into it like a maniac, and bursting into a laughing fit so deep, that my pain woes were gone for awhile. :laugh:
Three, was getting as far away from any other humans, as I moaned in as low a moan tone as I could for a minute. ???
Yup, for me these crazy antics worked. Have not needed them for many decades, yet would not hesitate for a moment, to revive them if needed. :bow;
Sorry I'm not able to say more regards your actual hurts. :(
But if you do give my nutty ways a try, would appreciate hearing which one made you laugh the loudest. :clap;
talker
-
Hi GLM! I had a graft put in my left upper arm, after my fistula wasn't able to be surgically declotted. I will tell you that it hurt a lot! I took every one of the pain meds they gave me. It lasted around 4 weeks, and slowly got back to normal. They were a long 4 weeks, though! I am happy to hear that things are going so well for you with the new hubby and your son! That probably helps a lot! Try to rest when you can and give yourself a break! It is a lot to handle, and you seem to be doing it wonderfully. Hope the pain ends soon! It does get better.
-
I'm not sure why you "deserve" to be kicked off the list. It seems to me you should stay on since you have so much trouble on dialysis.
Studies have shown that swearing helps with pain. Go for it. Although you may have to do it quietly around your son. (Is he a pre-teen? They are insane.) I also use breathing. Breathe in but then breathe out slowly for as long as you can. Count while you breathe out and try to make the count longer over a few breaths. Crying is also ok. If the pain meds make you nauseated, can you get some Zofran? Worth a try.
It's good that you have your family to love you and distract you. It's ok to appreciate that even when you're hurting. I'm sorry dialysis is so awful.
-
Years ago I worked with an older guy in the heavy equipment shop that had RA. Now I am assuming you mean rheumatoid Arthritis. And he was also diabetic. But he used about a tablespoon of honey in his morning tea. Claimed it relieved symptoms better than any meds he has ever had. But it had to be un-heated honey, like what you get in the comb or just spun out of the comb.
The pasteurization would kill the natural enzymes so most all store bought honey would not work for him.
If you can find it, hopefully there is something to it.
I know permanent pain from broken bones and joints. If there was anything that could help ease the constant reminders of I would be hoping to find it.
Take Care,
Charlie B
-
im mentally exhausted right now, and physically...
i feel like a complete loser, and i cant make my son or my husband happy like this.... i want to throw in the towel so badly right now its killing me. i know it will pass, i keep telling myself that, but im inching closer and closer to my edge, and no one is holding me back, if anything, they are poking me closer.... i cant make them happy, what the hell am i here for?
this sucks. i havent had this much depression in ... a really long time. if ever.
im finding it so hard to keep a straight face when i want to curl up in a ball in cry until my last breath is gone.
-
im mentally exhausted right now, and physically...
i feel like a complete loser, and i cant make my son or my husband happy like this.... i want to throw in the towel so badly right now its killing me. i know it will pass, i keep telling myself that, but im inching closer and closer to my edge, and no one is holding me back, if anything, they are poking me closer.... i cant make them happy, what the hell am i here for?
this sucks. i havent had this much depression in ... a really long time. if ever.
im finding it so hard to keep a straight face when i want to curl up in a ball in cry until my last breath is gone.
Please talk to someone, either a very good friend or a renal counsellor (someone outside your situation) ... or a good Doctor.
My thoughts are with you, sending you strength to get through this.
It will get better,,, :cuddle;
-
:Losers quit you have not. From what I have read you have over come more in your life than most people ever face. You have a family to support you and you wish you could do more for them. I bet if you asked them they would like to do more for you. You know that a little love goes a long way and it sounds as if you have more than a little love for your husband and your kids. Life as a dialysis patient is not easy. And there are days that seem bad but I guess all your kids care about is that you are there. Remember you are not in this fight alone family friend s and other patients understand and will be there for you.
-
:grouphug; :grouphug;
Sending lots of love, and strength-vibes over your way, Cas
-
I wonder if you could join a support group?
Ask your social worker about it.
-
i think we are still between social workers? i havent heard anything anyway... the nurse called me at home today to check on me, and apologize for today (another crappy treatment which could have totally been prevented but NO one communicates anything to anyone there- i think she was more upset about it than i was) and said shes sit with me on tuesday and discuss everything, try to figure out why im having such bad treatments and stuff... that was very nice of her to take time to do. i wish more were like her, the other nurses are just plain out rude and evil.
i feel a little better, my husband and i sat and talked last night about everything we are both dealing with and it helped quite a bit. we both have trouble communicating feelings so we both bottle, which sucks but we do try to work on it. hes been awfully grumpy with me and it worried me, being we are newly wed, but he assures me he is where he wants to be and loves us, and hes just dealing with everything going on in his own way, "because hes the man and its his job to deal with it" I informed him that we are married and we share in happiness and woes, so get off that 1930s way of thinking. :P
and yesterday was rough, i had a lot of trouble not tearing up throughtout the day, i try so hard to carry a smile so i dont worry everyone (so exhausting right now!!)...so during our bedtime cuddlefest, my son asks me why do you cry? i told him that right now mommy was hurting from having that surgery and it makes me sad because i cant do everything i wish i could for you guys.... he said "Oh mommy, you do a lot for us, you feed us and buy us stuff and make me go to school and get me up...." it was really nice to hear that from him. i almost bawled right in front of him then lol i kept it togethr to get him tucked into bed first lol
im in therapy, ive not seen her as much lately due to our conflicting schedules, since i added the extra dialysis day.... but i think i have one next week. im calling to see if i can get in early. i dont really have people offline i can talk to aout things because they never really know what to say, and my husband already expressed that it bothers him because he cant "fix" it, so im not going to talk to him about it, i dont want him feeling like hes losing a neverending battle lol
thank you all for kind words and love <3 it means a lot
i know ill pull through, always do, just hard to see that light right now.
-
It's ok to cry just not ok to cry long enough it makes you feel worse. I sometimes get a bad headache from crying. I'm glad that nurse is going to try to help you. Be very honest so she can figure it out.
It's good that you talked to your husband. I agree you don't need to have a heavy talk every day. Just be honest with your family also. Tell your son you just need five minutes before you can help him. Ask your husband to please clean up from dinner tonight because you are tired. Schedule a little free time every week alone with your husband (you don't have to leave home) where you don't talk about being sick. It will prob make him feel better. I mean even 30 minutes a week. I once had a friend who was really depressed and her husband was tired of her talking about it all the time. The counselor advised that she could talk about it for 10 minutes a day and he had to listen. Then she had to stop talking about it that day. I'm not saying your illness and pain aren't real. I'm saying that it can be difficult emotionally if he feels bombarded by it. Even if that's not what you're doing he has his perspective.
As far as quitting, when I'm really down it helps me to know that quitting is an option. I haven't felt it's time to do it yet but it's comforting to know it's there as an option. There is nothing abnormal about turning it over in your mind and then still deciding to get up tomorrow to go to dialysis.
Do see your counselor and keep in touch with us here. We want you to feel better.
-
this is going to sound like im paranois, but i really worry that my clinic is going to kill me. I honestly believe thats how im going to die. They are going to screw around and im going to croak.
if gas wasnt ridiculous, id go to the next nearest clinic (about 45+ miles, one way!)
i wish that nurse was full time, she only works like 2 days a week. the other nurse ... :thumbdown;
Im feeling a lot better. I have such a sweet son and husband, they really make my life have meaning. i love them so much. im still not completely ok, but i dont feel like im in the depths of dispair now lol if dialysis didnt suck, id probably be on top of the world!
-
Dear GLM is there any way poss to take more controle over your treatment at the clinic? Like setting up the machine? Inserting your needles? I'm sorry if you answered those questions already. The paranoia feeling just sounds very personal to me.
I 'knew' they would kill me too.
-
I often had those thoughts when useless or new nurses were assigned to me, and they had problems needling me.
I wanted to scream FFS you're killing me or I can't possibly do one needle dialysis because you can't put the needle in right (You're lucky to process 20 litres like that)
"The silent scream" :cuddle;
-
I agree with Cassandra; take control of your treatments. You will feel a lot better knowing that you are in control. If you are comfortable, learn how to put in your own needles. I did when I was in center although I did not do it offen in center. Your feeling is natural as we all at one point or another feel or felt that the techs and nurses were going to kill us.
Hang in there lady; you are truly blessed.
CDW 8)
-
GLM, I do relate to your feelings. While I am lucky to not have any deep lows right now, there always seems to be at least that one major thing that dumps loads of stress on an otherwise picture-perfect scene. I have had some enormous highs as of late, and I suppose the stresses are what allow me to really experience and appreciate the pinnacles of joy. (I'm still going to be popping champagne corks if we ever get rid of our last few massive stresses, but I guess I'll survive if that takes a bit longer.)
Fight for the transplant list if you have to. You most certainly do deserve to be on there. I hope you can sort out dialysis so that you can enjoy every bit of married life!
-
I don't think you're paranoid but I do think your are overloaded. Can you at least try to not stress about everything all at once? Focus on one thing at a time for the sake of your mental health. (Yes I know it's easier said than done.) Try for a few min a day when you focus on you and not on any of your stresses.
-
i have some potentially interesting news...
transplant called me for my reeval.... they mentioned me having to see the pharmasist while im there, now, i dont know, but id kind of like to assume at least that i wouldnt be seeing a pharmasist unless they are planning on keeping me on the list.... i hope hehe do you think??
i quit smoking last night, i know i can do this, just hope i dont gain a bunch back!
stress right now is very high, but i definitely feel so much better than i did. i see my therapist tomorrow too, so hopefully i get a lot off my chest and can have some sense of normalcy
-
I very much hope they're keeping you on the list. There was no pharmacist involved with my first transplant. After my second transplant, a pharmacist came to see me. She had counted out a weeks worth of meds into containers and went over it all with me. She set me up with my pharmacy.
I think for a reeval, the pharmacist wants to go over meds and what they cost and preparing you to take lots of meds.
You quit smoking last night? Good luck. We'll cheer you on if you need it. Go in there and tell them you're ready for a transplant!
-
yep, havent had a cig since yesterday. doing pretty good. Ive only have 2 major cravings for one, both time its because i could smell my hubbys smoking outside, because our doors and windows are open, for some fresh air.
-
Great job with not smoking! You can do it! I don't want to sound like a pill pusher, since we are on so much medication already, but I don't think I could function without my Zoloft. I only take a 50mg tablet each morning, but it has helped me so much. I had gotten to the point where I cried at the drop of a hat and had lost my motivation to do anything besides sleep. Combined with a radical hysterectomy that put me into instant menopause, I was struggling to function at all. Not suggesting it will solve all your problems, because I still have bad days, but it has really helped me. Just something to think about. Maybe talk to your neph about it. Never hurts to ask. Good luck! Hope your treatments get better and you get some help with the depression.
-
Also look into an E siggy. They actually work, and yes there's nicotine in it, bla bla, but I've stopped since Xmas without wanting to kill someone, nor gaining wait (well I did, but I blame Nxstage which makes my Potassium too low, so I have to eat extra chocolate, and crisps etc boohoo)
It'll just make it easier if you hit a rock.
Good luck my darling, and lots of love to you, and your fam, Cas
-
im on cymbalta
i have an e cig, if i can find the darn charger lol, i have one that you can get nicotine free cartridges, ill probably go get some when i get paid.
so far so good, this morning was a bit rougher than yesterday, the craving was a bit worse, especially with the morning coffee.
i am wondering if taking 1 drag of my hubbys cig (til i can get my e cig charger and cartridges) would curb the worst parts - after i eat and when i wake up, but at the same time, i think thaty would maybe defeat the purpose of all of this... so idk what do you think?
im always sooo tired when i dont smoke, why is that???
-
Nicotine is a powerful stimulant. So going off it can create fatigue until you have time to reset the system over a few weeks. Hang in there.
-
:secret; If you can, try a cinnamon stick.
While some are unable to, I did use a licorice stick.
Of course that great solvent 'WATER', :boxing;
Don't fight it, agree, to 'not smoke' for the next ten minutes only. Then REPEAT. Then REPEAT. Then REPEAT. Then REPEAT.
is a bit of magic in this process, that quells the insistent delightful urge to light up.
Is rare for any non-smoker to really understand how powerful the 'light up' urge can get.
Like me , you need to find the right combination, and pow, all done.
Yes, you will succeed.
talker
-
so far so good,
ive had a few rough cravings, but nothing too bad yet, jsut so sleepy. and ive been wanting to eat more.. trying not to do that!
-
How are you getting on Glm?
Love, Cas
-
health wise i could be better lol apparently cold turkey quitting is no good for me, so im technically still smoking, i have 1-2 a day, just so i dont have the damn nasty withdrawl symptoms right now... im dealing with severe RA flair ups, my darn graft is bruised horribly, due to my clinic not knowing what the heck they are doing... but im still determined to be smoke free by my appointment time.
how are you?
-
Keep up the good work.
-
I quit for a whole year.
Unfortunately I started again, up to a little over a half pack daily.
I'm such a s#1t.
-
I hope those RA flare ups are a lot less now, and 1-2 ciggies a day is pretty good, when you feel up to it you just swap them for 1-2 eciggies, and you'll be a 100% ex-smoker!!
I only smoke real ciggies when I'm on holiday, or when there's cannabis in it, so I've sort of stopped.
:cheer: