Topic : Living with Chronic Pain

 Hi Cheryl 

Of course you would be with all of us.. I mean "everyone".. 

How cool you got up and at them today. 4-H is such a wonderful group and I had many years in it with my horses. 

You just GO Girl!!. 

I just got my shot gun back from Texas and had chocks' put in it and will be doing my first time ever, spring turkey hunting next month.. So excited about it.. 

And I am behind you 100% on Welcoming all the new people. I have found so much hope and love and help and new friends on this board. It's just a new "high-light" in my life. Something to look forward to when I wake up. 

Question for you- 

 has it been the drugs that you are taking for pain that have caused all the problems with your teeth?? And if so, which one's that do damage?? 

I am so lucky to have good teeth so far, and just had a cleaning/check-up and was told I have to get my two wisdom teeth taken out so they do not cause damage to my other teeth. So, I do have a call in to get an appointment to get them out. 

Also for the loving husband who wrote in this morning. My mind just keeps going back to you and your wife. I do not have fibro, so I don't have any great advice on this. But, your letter just keeps my mind going. 

I do know that there was so great advice on "sleeping together" and keeping that bond strong. So read back to yesterday or the day before. 

I was wondering if the Pain Management Dr. has talked to you both about an exercises program? Also maybe some counseling for both of you. I know in the bigger City's some of the pain management centers offer this. 

A friend of mine who lives in FL. his pain management center has everything from the Dr. to Physical therapy to nutritionist and a gym to work out in and counseling for patients and family. Of course, living in Wy. this to me sounds like something from outer space. Oh, I left out there is also a swimming pool. They say the water can be the "best" for us in chronic pain.  

Just some things to think about and maybe check into. 

Okay, this girl needs to get some things done around the house, I feel okay today, so need to get up and moving.. 

Happy Sat to all. 

Diana 

After suffering for many years with RSD, I have found relief for chronic pain.  I have constant abdominal, leg and arm pain.  The temperature changes and the nerve pain are incredible.  In addition, I also have 4 bulging discs in my neck and back.  I have found the only doctor to treat this dibilitating pain without surgery, which causes more pain due to the nerves being severed.   

Dr. Schwartzman out of Hahnemann Hospital in Philadelphia or you can go to Germany for the same treatments.  He treats using Ketamine infusions.  People come from all  over the country.  He has given me a great deal of relief.  Only problem is it takes almost two years to get in to see him and then another year to begin treatment.  It has been worth the wait and alot of persistence.  If you go to him and opt to go to Germany for treatment you will get treatment faster.  Unfortunately, during the treatment I had to have another major surgery in my abdomen so in the midst of my treatment (boosters) I have gone back a few steps...but continue on the right path towards some normalcy in my life.  Pain ruins sleep, relationships, makes it very hard to work or concentrate and in many ways ruins your life.  I try to have a good attitude and not complain.  I think in addition to treatments or surgeries you receive you need to have some good therapy to work through the issues associated with PAIN 

I too have Fibromyalgia and chronic fatigue brought on by the constant pain.  I, too, went to a pain management doctor and had radio frequency treatments in my back.  They helped my back, but not my overall body pain.   

I have had good results with acupunture.  I didn't believe in acupunture until I got so desparate I would try anything.  It is wonderful and so beneficial.  It is not painful to have either.  Most insurance companies do not cover acupunture, but it is worth the cost to get relief from pain.  I hope she will try it.   

You will be in my prayers that God will comfort both of you.  

I see I have quite a few posts to catch up. Been really busy here the last couple days. Pain has been tolerable although heading for "tuck in" here shortly. 

Just want you to know I haven't forgotten about any of you. Diana, I'll respond to you in depth tomorrow. 

I hope you all had a wonderful weekend. 

By the way, you would NEVER have to ask me twice to go to Vegas and tear it up! ;) 

Goodnight. 

Love ya, 

Andrea 

 Just did some more reading with everyone and kinda just kicken back tonight. 

The wind has been on high grear all day and said we are on a weather alert until Sunday night. So will see what happens between now and then.. 

I did not go to sleep until 3 this morning and then slept hard until 12:30.. So just hope I can shut down early tonight.. not in the morning.. the gift of pain, can sleep, or can't sleep or who knows.. 

Talk to you all sometime Sunday.. 

Night Night..... Diana 

dear ron -- 

you make clear what we so often don't wish to acknowledge.  virtually everyone with chronic pain develops, over time, a "sickness behavior."  it is not that anyone is purposefully trying to manipulate, it is a response born from fear of being left to fend alone [my theory, at least]. 

my guy -- we've been living together for 16 years, no kids [one feisty feline] -- is my care giver.  he refuses to look at it that way.  "i'm just doing what i need to do for you because i love you," he says.  a few minutes later, i hear him screaming bloody obscenities because of something very trivial.  stress, what stress? 

when i am not able, he helps me to sit up in the morning, gets me a pain pill, brings the coffee.  he does the grocery shopping, takes out the trash.  drives me to my numerous medical appointments and endures them with me -- i think that way he and i are both on the same page about progress and any changes the good physicians feel inclined to make.  he is also there to ask all the questions that i forget.  there was a time a few years back where he had bedpans to provide and to empty... you get the gist. 

even now, when i am getting stronger and am more insistent that he NOT do things for me -- he is my provider -- because we've both seen how things can turn on a dime.  back in october, i was also doing really well.  i bought an expensive, commercial model dual air stationary bike.  a few days after it arrived, i was in the i.c.u. with people doing cpr on my comatose self. 

my hope for you, as is my hope for my guy, is that you talk with your wife and *come clean* about the stressors of being a care giver.  i don't know how you feel about counseling... but i went and saw a pain counselor [yes, they exist!] and it turned out that my concern for him was the source of much of my depression... my fear of holding him back from life, my fear of losing him.  she gave him some advice -- like "let her vacuum the house from the wheelchair, even if it takes her 3 hours of stopping and starting and you could do the job, and do it better, in 15 minutes..." -- and like "the pain is real and it is terrible, but you're still alive... go outside, turn off the t.v., cook something interesting and that doesn't involve the microwave... put on some make-up... " 

there are many respite care programs out there, try one out!  someone can come and help your wife while you get a break, a mini-vacation, time to tend to yourself and yourself alone.  and, really, these "swaps" can be beneficial to her also -- she can learn new ways of handling pain, get useful suggestions -- and she can do any grieving she needs to do without fear of burdening you. 

i hope i have made sense.  i was supposed to be asleep an hour ago! 

be well, 

profderien 

sorry to hear about your wife and all of the pain that she is in  

i suppose the thing to do is to just take care of her and love her the way she is  

i mean the drugs are the ones making her the person you are not used to  

have you thought about other alternatives than the medicine 

 or is the medicine helping with the pain? 

take care 

  You definately have a long histiry of illness in both yourself, and your children. It sounds like you had placenta breakdown with the first through fourth pregnancies..did they ever send then off to be tested? My first pregnancy was spent in and out of hospital, and went into premature labor, unstoppable, and had emergency c-section. My second pregnancy, I started having contractions at 2 mos, and was high risk, also spent times in hospital. On my son's 2nd bithday party, my stomach hardened and would not get soft, so we went to hospital to get "checked out". My daughter was born 28 minutes after we hit the doors, The Doctor actually said, as her vitals were crashing, "we are going to cut you, but you are not going to be numb yet", I prayed and prayed, told them to do whatever they had to do to save her, she had flatlined. They pulled her out and were able to bring her back, 

  The next day my OB/GYN came in and told me that I had Placenta breakdown w/first child, a beautiful boy, and that by the time results came back from the lab, I was already pregnant with daughter, and he and and my High Risk Dr. decided not to tell me, as thought I would panic with second pregnancy, especially since I was already having problems..they wasted no time after 2nd to tell me, and that I should avoid getting pregnant again, as I would miscarry, or would self abort pregnancy earlier and earlier, giving baby no chance. I was done anyway, but still don't know if they did the right thing, as she did not gain an ounce in over a month before she was born, and I almost lost her. I just thank God, He decided she should live. They both look and act normal, but.... 

  I did not find out until my son was four, and I was in Texas with my very knowledgable Professor of Oral/Max surgeon, planning my 26 and 27 surgery on my jaw to replace my broken protheses, did he mention, "you know to tell all of your kid's doctors that you carried them w/ Sjogren's syndrome and conective tissue disease right?"..I did not. I asked him them what it meant, and he said they were born with compromised immune systems, and other potential problems could arise, and some doctors would want to know, others will care less. The truth is, they both have had surgeries, allergies, asthma, and they DO have compromised immune systems..they say they will get better the older they get, and both seem to.but I felt sooooo guilty..I know that the first 2 and 4 years of thier lives I "dropped the ball" in not asking myself what my diseases would do to my kids. I have since forgiven myself and the Doctors here in Ohio(where I live) for not knowing and/or not telling me..as they learned about my diseases while I was pregnant.  As you see, It is possible to give your children something through heredity, but looking at your childrens ages, they did not even know about DNA back then, only RNA. Don't you feel guilty in any way, and I to have wanted/and needed DNA testing but no one will pay, and I do have ecxellent insurance,with medicare A and B, but they will not pay for anything close, or travel expenses, as I have to travel to Texas alot for surgeries and the only Doctor who EFFECTIVLY works on my orphan disease. They are both in Dallas, I live in Columbus, Ohio.  

 I'm glad you got ssi, now try getting your kids a check, everyone of them. Your oldest definatly qualifies in his own right, and you should be getting supplemental checks for each child in the meantime. It will help with his travel and overall income of the household. Easier for them to get than adults, and when he turns 18, they will usually continue benifits as long as needed. As to Insurance, here we have several plans to chose from while on disability or sate/county assistance programs, get all info you can and change to fit your needs better, if can..here we have Caresourse, State insurance, and Benificial. These are for people, "on the system" and they are different in coverage, although none will pay for DNA testing, but listening to you, I would say it's pretty appearent some things are running through family. Good luck with everything, and I will keep you and your family in my parayers, as I see you have sacrificed so much for your children, and in this day and age, and the age you were when you had them, is special. Not many moms would have have done as much as you have under same circumstances, so please don't keep beating yourself up. Valerie