Any advice for me?????

[ILOVEFLUID]

I wonder if anyone could give me some advice.I am having some problems on dialysis and off. When on dialysis I have a lot of pain in my arm due to the needles resting on the ulna nerve, carpal tunnel and neuropathy due to diabetes. Sometimes it is so painful I have to cut my dialysis short which is obviously not good for me. Lately I have been taking percocets to control the pain. It works some of the time but I really don't want to be taking them 4 times a week. I am now in Toronto training for home dialysis Yeah!!! No more hospitals..However I will be dialyzing every 2nd night for 8 hrs which could mean up to 4 percocets. Anyhow, I want to try and control the pain in some other way.. maybe meditation or something. Do you know anything?
I also get what I call Dialysis rage. After about 2 hrs I start to get really anxious and angry. They have told me that dialysis irritates the nervous system, therefore, makes me irritable. I get extremely agitated and bitchy. So now they give me Clonozapane. More drugs I would rather not be taking. Would love to know a way to control my anxiety without drugs. Any advice?
On top of all this I am having major problems with my parents. Ever since I got sick 9 years ago, they have treated me like a baby. I appreciate all they do for me but am fighting for some independence. Every step I take toward being more independent...they try to block it. For example I started seeing a hypnotherapist to control my stress and they made up a lie and said she had told them all these bad things I said about them during hypnosis. I got really angry at the hypnotherapist and stopped seeing her. 6 months later, I find out they had made it all up. I am now seeing a therapist and she was helping me a lot but my parents felt she was turning me against them and refused to pay for it. Now I can only afford to see her for an hour once every two weeks. Murray and I are getting married in the fall and they don't like him very much, so they make my life hell complaining about him. I try to hide it from him because I don't want his feelings to be hurt but I feel I am going to burst.. I am so stressed and need an outlet before I make myself any sicker. I have been in a depression because of all this for a year now and find I am not taking care of myself as well as I should be. I need a way to release my stress and be able to relax. Once again...Any ideas?
I also am searching myself spiritually. I was raised catholic but have known for a long time that it was not for me. I know what I don't believe in but need to figure out what I do believe in. I am intrigued by Spiritualism, Humanism, Buddhism and Unitarianism. This is another reason i am eager to learn about yoga, meditation and eastern philosophies.
I am an avid reader so if you know of any books that could help me on any of the above subjects, i would love to know their titles.
Lately I have been very weak. I fell in stores 3 times in the last month in Toronto...I am now walking with a cane. I am walking and exercising as much as possible but keep pulling muscles. Do you know of any exercise that is good for extremely inflexible people. I would love to do yoga but don't think I am flexible enough to do it. Is there a type of yoga that is much easier than the others. Have you heard of any yoga DVDs that are easy? I have been doing Tai Chi and am enjoying that but would like some other choices. I also go to the therapy pool and do stretches in very warm water.
Wow!! Sorry this is such a long post. I am just hoping that some of you might have similar problems and have found alternative ways of dealing with them.
Thanks so much!

[Sluff]

I'm so sorry you are struggling and hope someone can offer some good advice. I too was born Catholic but my beliefs follow closer to baptist.

[Adjel]

I don't think that the catholic church is the problem. I grew up catholic, but I find I get more out of and understand the seventh-day adventist better.  When it comes to believing in yourself and getting your life straightened out I think Anthony robbins writes some good books.  Unlimited power and awaken the giant within.  Norman Vincent peale's power of positive thinking I also found to be a good book.  Peale's book is about doing something positive everyday and anchoring yourself to that.  I think Anthony's books are better personally.  Basically you are in charge of what goes on in your  own mind and you decide what goes in and what you keep in.  Adjel

[boxman55]

It sounds like some of the problems stem from your parents. I am not sure how old you are but with marriage coming up it might be time to tell them to back down a little. Boxman55

[jbeany]

Be honest with your fiancee about your parents.  He knows how they treat you, so I doubt their feelings for him will come as a big shock.  You need him to support you.  Hiding what's going on will only prevent him from doing that.

I'd try a yoga for beginners tape.  You don't have to be able to do it all at once, but it will get easier as you go.

Have you tried a heat pack for your arm during dialysis?  I have nerve damage in my wrist from a unsuccessful fistula attempt.  If I don't have a warm pack for it, it drives me crazy by the end of dialysis.  You can make your own from a bit of scrap flannel and a bag of dry rice.  Just heat it in the microwave for 4 or 5 minutes before you go in - it will stay warm for about half the session.  Just be careful at the beginning, it can be really hot!

If you are switching to home dialysis, I'd hold off on trying to get off the clonozapane.  See how it goes at home - your stress levels may be down far enough there that you don't need it.  As for percocet, well, I don't like taking pain killers, either, but you have to understand how much energy pain uses up.  You can't possibly cope with all the stress and be in pain.  And the more stress you have, the less able you are to cope with the pain.  You can't deal with everything at once.  It sounds to me like your parents cause you a more stress than anything else in your life.  If you can figure out a way to deal with them, it should get easier to deal with the stress from dialysis.  (You can't change your need for dialysis - but maybe you can change how you deal with your parents!)

[keefer51]

I thouhgt i was the only one with that problem. I am so excited to be able to meet someone else. I have a left arm fistula that sits in the cuff of my arm. The second needle hurts so bad i feel like crying. And I'm a 51 year old male! The fistula effected my hand my thumb and first two fingers were bad they peeled and became black in the winter. After two operations my blood flowed more to my hand correcting the problem. Their aren't too many nurses or techs who want to stick me. I have to say two of the three days i am on dialysis i am in pain. When i asked about it i was told i was the only one that had that problem. They said well so and so doesn't have that problem. So i fought back. I don't let too much get to me. But now i am more vocal. I have tried asking the important people the important questions. But i received stupid answers. Thank you so much for your post. During dialysis i just sit through the 4 hours in pain. They say they give me anything for the pain. After a year i finally received Tramadol 50mgs. They also give me Amitriptyline 25mgs. These meds have little to no effect on me. I have given up on trying to get anything out of these idiots. sometimes i have to go to outside sources. They have made me feel i am a drug addict if i ask for anything. Now i look who ever is sticking me right in the eye and when they say i am being a big baby i say well could you please let this big baby stick you in the same place. That usually shuts them up. I try and listen to music. sometimes i meditate about the ocean. I was born Catholic but was abused. Enough said. This may not sit well but this is a thought i always keep in my mind. Whatever misery Christ had on the cross is nowhere near the misery we have to go through on dialysis. Amen.

[ILOVEFLUID]

I have tried heat packs and they do next to nothing for me...sometimes they even make it worse.  If my fiance is at dialysis with me, he massages my hand with hand cream, that sometimes helps.  Often just moving my arm to a different position helps.  I never know what will work or when the pain will come.  They have said that they could operate on the ulna nerve but that it may ruin the fistula.  I have had 23 lines, 2 fistulas and a graft.  i am not taking the chance on losing the one good access i have ever had ( 6 years and counting). 
Yes, my parents are a huge problem but I am hoping home dialysis will change that.  They always went to in center dialysis with me and my mom especially, found this a great time to nag me to death.  I couldn't walk out on her and wasn't likely to cause a scene.  Now dialysis will not be a part of their lives as i don't plan to hook myself up until midnight and they are long asleep.  i can't imagine them diving over to my house in the middle of the night just to nag me.
The nurses at the center always made me feel like a big drug addict because i took a percocet and clonzapane during dialysis.  I always got lectures on how bad theywere for me and how addictive they can be.  They never paid attention to the fact that the doctor first prescribed me morphine and after a few treatments I refused it because I found it to be overkill.  I just love how people tell you don't need drugs when they have no idea the pain you are going through.  Oh I am so glad to be out of in center hemo.

[pierrat]

Have you tried getting a stationary bike? It works for me, its low impact, requires just a little mobility in the legs and it involves your whole body for a complete work out.

[kitkatz]

I find creating a scene with my Mom usually gets her to stop nagging at me.  I also use my sisters as barriers when I am in the hospital to my Mom and her friends coming to see me.  Once my mother brought in people and prayed over me.  I almost threw them out of the hospital room, but did not want them praying outside the door for me either. When my sister showed up I told her to take Mother and be gone with her and if Mom brought her friends back I was going to have a fit. I also had the nurses post a Visito rs see the Nurse first sign on my door. That gave me warning before someone burst in on me.

Have the head nurse at your dialysis center also tell Mom that there is a new policy of no visitor for more than twenmty minutes at a time. That way you get some peace and quiet from Mother.  Also if you are getting married soon you need to make sure your mother is not going to run your life.  Be an adult and act like an adult.

Pain sucks.  I know when they nail a nerve in my arm I have to find the right position for the arm and then stick with it the entire treamtent in the same position. Other wise it hurts.  Have you tired a cold pack then a hot pack on the arm? Twenty minutes cold then twenty minutes hot pack.  Sometimes the change in temperature helps relieve the pain.

[goofynina]

ILF,  i have the same problems with weakness in my legs and explained to my neph, she flat out said to find a pool, that would be the best exercise to strengthen my muscles, so, once it gets hot enough, i am going to be traveling to my sisters, 30 miles, each day so i can do some laps in her pool.  
As for your parents,  are you by any chance depending on them for financial support?  if not, then i would definetly speak up and out and let them know that this is your life now, your a big girl, you now have someone who can take care of you and you would much prefer them to come and "visit" instead of come and take care of you, remind them you love them but this is your life and Murray is the one you have chosen to be with and you are sorry if they cant accept it.  You dont have to be mean, and yes, they may get their feelings hurt, but, i think it would be best in the long run.  Good luck and let us know how things are going with you.
Oh, and as far as being depressed goes, i can honestly say, being able to come here and vent and having someone who knows what i am going through, what i am feeling, to me, is the best medicine i can ever have.  It is so comforting to know that my friends are here and i have their support.  I hope you really do try to come more often and let off a little steam.  Believe me girlfriend, our support group we have here with IHD, well, there is no better thats for sure  
And as for when you are irritated, have you tried taking Benadryl?  It may knock you out but that was always a good thing for me, i hope it works for you too     
You take care of you girlfriend, do what you got to do to get yourself situated and back home and on that home hemo and i guarantee, that alone will make you feel loads better as well.  We are here for you girlfriend, always have been and always will be  

[keefer51]

Since they ask the same questions "Do you have any pain or bleeding?" I always answer the same, "Yes i have pain in my arm" Well they say, "From 1 to 5 how bad is it?" I say it's a 4 or 3. They say that is imposable. "If you had a 3 or a 4 you would be screaming." So then i say, " If you like i will scream. but i don't think the other patients would like it." Most of these people lack the big "C" word. Compassion. If they had a little compassion they would understand what is happening. If they told me "look your fistula sits where your ulna nerve is so when you get stuck you will experience a pain that will make you cry. I can then get my body ready for it. Instead they look at you like you are a drug addict or compare you to other patients. Ice and heat can help but the pain lasts longer. I wish they could give me something so i don't have to feel the pain. I can not understand how or why they can transplant organs and do some of the most mind blowing operations but can not come up with a way to have dialysis without pain.

[goofynina]

Since they ask the same questions "Do you have any pain or bleeding?" I always answer the same, "Yes i have pain in my arm" Well they say, "From 1 to 5 how bad is it?" I say it's a 4 or 3. They say that is imposable. "If you had a 3 or a 4 you would be screaming." So then i say, " If you like i will scream. but i don't think the other patients would like it." Most of these people lack the big "C" word. Compassion. If they had a little compassion they would understand what is happening. If they told me "look your fistula sits where your ulna nerve is so when you get stuck you will experience a pain that will make you cry. I can then get my body ready for it. Instead they look at you like you are a drug addict or compare you to other patients. Ice and heat can help but the pain lasts longer. I wish they could give me something so i don't have to feel the pain. I can not understand how or why they can transplant organs and do some of the most mind blowing operations but can not come up with a way to have dialysis without pain.

How dare they doubt the amount of pain your in, shame on them, i have a good mind to go over there, take one of them needles and stick it right in their ass and ask THEM, now you tell me, how much pain do YOU have?  what? a 20, impossible, damn that pisses me off!!! 

[Sluff]

Since they ask the same questions "Do you have any pain or bleeding?" I always answer the same, "Yes i have pain in my arm" Well they say, "From 1 to 5 how bad is it?" I say it's a 4 or 3. They say that is imposable. "If you had a 3 or a 4 you would be screaming." So then i say, " If you like i will scream. but i don't think the other patients would like it." Most of these people lack the big "C" word. Compassion. If they had a little compassion they would understand what is happening. If they told me "look your fistula sits where your ulna nerve is so when you get stuck you will experience a pain that will make you cry. I can then get my body ready for it. Instead they look at you like you are a drug addict or compare you to other patients. Ice and heat can help but the pain lasts longer. I wish they could give me something so i don't have to feel the pain. I can not understand how or why they can transplant organs and do some of the most mind blowing operations but can not come up with a way to have dialysis without pain.

How dare they doubt the amount of pain your in, shame on them, i have a good mind to go over there, take one of them needles and stick it right in their ass and ask THEM, now you tell me, how much pain do YOU have?  what? a 20, impossible, damn that pisses me off!!! 

I'll back you up Susie!!

[LightLizard]

Your experience in Tai Chi and yoga could be very useful in your current situation.
Knowing how powerful the breath is, I would suggest that you explore the practice of Qigong.
Meditation can be a very effective tool in pain management, and I have found, through my own experience, that the practice of qigong meditation is a very useful in this regard.
During the past two years I have been very close to death. A few times, the doctors didn't expect me to pull through. But, here I am! One of my doctors mentioned that my lungs and heart were very strong. This is what has allowed me to survive, I believe. And I can only attribute that, (the strength of my heart and lungs), to the practice of Tai Chi and qigong.

love

~LL~

[jedimaster]

I do get anxious also. Same here, they gave me Clonazepam, which works most of the time. Now I will try to get off that with some professional help. Irritable I have been always  , but now i can blame it on my dialysis...

[ILOVEFLUID]

I live in a very small town with little access to different types of recreational classes.  Do you know of any books or DVDs that could teach me Qigong?
Thanks for the advice 

[LightLizard]

I live in a very small town with little access to different types of recreational classes.  Do you know of any books or DVDs that could teach me Qigong?
Thanks for the advice 

There is a very good and inexpensive video I've seen around for awhile called 'A.M.Qigong' -
It lays out the basics nicely and presents a routine that takes about 20 minutes to perform.
It's based on the ancient 'Eight Pieces of Brocade' qigong system and is very worthwhile for beginners and intermediate levels, as well. Some of the exercises are perfect for adjusting to one's condition. For instance, if you are having problems with leg strength or balance, they can be adapted to doing them in a chair.
The best book I've seen (my 'qigong bible') is 'The Way of Qigong' by Ken Cohen. It has some excellent instruction on the more placid, (seated) qigong with a wealth of information on many facets and different systems of qigong meditation/healing practices.

Breath deeply, smile....
you've just done qigong!

love

~LL~

[LightLizard]

This site offers some simple and useful exercises in the qigong tradition that could be modified as needed..

http://www.everyday-taichi.com/qigong-exercise-pictures.html

love

~LL~

[stauffenberg]

Since I was incurably ill from childhood, my parents never stopped treating me as though I was a baby, so eventually the only solution was simply to move far away and keep them out of my life, or let them into it only as far as I wanted them to know about what was happening.

I was brought up both Catholic and Protestant by parents re-fighting the religious wars of the Reformation within their marriage, and the end product of that conflict was that I turned out to be an Existentialist Atheist. I have found it enormously strengthening for me not to rely on anything but what my own mind finds rational, rather than having to rely by an act of forced belief on stories that intrinsically make no sense.

When I was on dialysis, I planned to try to improve my health by practising Qigong, but the book I bought on the subject warned that it should not be practised by anyone with abnormally high acidity in the body fluids, which is of course exactly the problem in people with defective renal function, so I gave up the idea.

[LightLizard]

All I can say is that qigong works very well for me, and I have no kidney function, to speak of, so I would discount that book's advice completely.

love

~LL~

[thegrammalady]

next time the staff at the center gives you a bad time about pain medication, look straight at them and tell them to talk to your doctor about it. that should shut them up. or tell them when they get medical degrees then they can voice an opinion. till then it's none of their business

[stauffenberg]

Slow, abdominal breathing is essential to successful practice of Qigong.  But in the book by Kenneth Cohen, "The Way of Qigong" (New York: Ballantine Books, 1997) pp. 120-121, there is the following warning:  "... certain diseases, such as hyperglycemia, diabetes, and kidney failure, create metabolic acidosis, too much acid.  In these cases, chest breathing and a quicker respiratory rate may be a necessary biological adjustment, a way of maintaining the acid-base balance.  If hyperventilation is needed to correct a serious underlying disturbance, then to interfere with it is to court disaster. ... Thus, it is extremely important that qigong students realize that there are times when hyperventilation should not be interfered with and when it might be dangerous to practice slow, abdominal breathing.  Anyone with a serious medical problem should practice qigong breathing only with the approval of his/her physician."

[LightLizard]

It is wise for anyone beginning any form of fitness to consult a physician before beginning, healthy or not.
Deep, slow abdominal breathing is required while performing qigong, of course, but it is not the way we breath most of the time and it should not be the aim to breathe this way at all times.
We have to allow for the body to take in the oxygen it requires in whatever way it does it and the benefits of qigong are really to the mental state, the joints, tendons and nervous system, mainly. The benefits to the musculature are minimal and not much more than a regular walking regimen would provide.
There are many qigong charlatans out there that have presented qigong as a mystical and magical method of gaining power. It is not any different from yoga, really, and any perception of it being a 'cure-all' would be a mistake. It is an 'adjuct therapy' at best.
The term can be translated into english in two ways;
'Qi'=the air we breath. 'Gong'= work, or the effort we put into a task or project of any kind.
In this translation 'qigong' could be viewed as 'breathing exercise' or 'breath work.'
The second level of translation is 'Qi'=energy (what is thought of as the 'life-force') and 'Gong' -the same as above. So the second level of translation would be 'energy work.'
Both of these are useful and beneficial activities, and as I have said before, qigong works very well for me, and as my doctors have stated, my practice of qigong is very likely responsible for the fact that I am still alive.
People can always find reasons to avoid certain activities. The reasons can vary widely, from person to person. They could hold religious predjudices or could just be lazy and justify their non-involvement through needless critisism, as well.
The point is, most medical professionals recommend some form of physical activity for dialysis patients. In fact, it is essential for maintaining and improving one's level of health, whatever that may be.
Qigong (and I include Tai Chi in that term) is a very reasonable and highly more interesting option to weight training or walking, in my experience, and is easier to continue the practice as one ages, as the stress on the joints is practically non-existant.

To each his/her own, of course.

love

~LL~

[LightLizard]

And by the way, with all due respect to Mr Cohen, I would remind him (and anyone else that is interested) that the reason one hyperventilates is because the system is lacking reserves of oxygen. Regular (breathing) exercise floods the system with oxygen and precludes the necessity of hyperventilation, for the most part.

love

~LL~

[stauffenberg]

Hyperventilation in disease is the result of the body's effort to reduce its acidity by getting rid of CO2.  This is why they say that acidosis is the only disease a doctor can safely diagnose over the phone, since the patient exhibits the characteristic of 'Kussmaul Breathing' -- quick, sharp, shallow, audible breaths -- which are the most efficient way to get rid of excess CO2.  Unfortunately, however, in diseases such as diabetes and renal failure, such breathing is insufficient to reduce the acidity levels to normal, so acidosis, a very dangerous condition, can ensue.