some personal things about my cp

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NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 4/30/2011 1:54 PM (GMT -6)   
I have been off line for a few days due to the passing of my dear friends husband, during this time i have been realvaluating why i havent changed my meds in 3 and 1/2 years even as i knew they had stopped being effective for a while now, so here it is. my mother passed in 2004, and unfortunatley when she passed we had never connected for many years before that. after i first injured my back in 1989, it was called a pulled muscle, well by 1999 that pulled muscle had become ddd and several other problems. throughout all that time my mother never thought i was really hurt, she would say things like, "kathy if you would just get up and move around you would feel better, or your just lazy, nothing can hurt that bad", these words of hers hurt in many ways, i would question myself, maybe shes right, i would stop taking my meds until the pain was unbearable which would be one day, just to assure myself that i did indeed hurt.  but years of that doubt she put in my head took its toll. i realized just very recently that i had to get her out of my head, i was making my life miserable by listening to her words even though she isnt even around anymore. with the passing of my friends husband i did some serious soul searching, i know what my body feels like, an though i wish this pain on no one sometimes i feel if my mother had walked one day in my shoes maybe she would have felt different, i know now that i am the one who must make decision concerning my meds and not let the person i felt should have always been on my side go, at least that part of her that made me feel like a hypocondriacte (i know thats spelled wrong) anyway being able to vent on this forum is so very helpful to me in so many ways. hoping all are having low pain days, i know i will be better after my docs appt on wed. good luck and many many thanks to all.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/30/2011 4:41 PM (GMT -6)   
Oh NiNi, I know just how you feel!
 
I was with a man for over three years when I got injured. He was with me infact the day it happened. He went with me to many of my appointments, watched me struggle with doctor's disbelieving my pain when they could physically find nothing wrong on my tests, watched me struggle at physical therapy, the tears in my eyes constantly from trying to fight through the pain, the withdrawls of quitting Vicoden cold turkey. But after my case was closed, after I was told "I can't find anything wrong with you, there for you're fine." everything changed. This was now a year and a half later. Now suddenly the pain was in my head. I was faking it. I was a liar, a hypochondriac. We were living with my family as we'd lost our apartment, and we'd been on the road to getting our lives back together so we could get our own place again... only now, I couldn't work. I was being lazy according to him, I was content to just stay with my family, everything bad happening was my fault.
 
After he got in an accident (not his fault thankfully) in my truck, and was set to get a fat settlement, he left. Not wanting to share a dime, other then what I was due for the "value" of my SUV, he bailed out of me and my son's life.... Two months later he was married to one of his co-workers. A job he wouldn't have gotten if I hadn't encouraged him to apply. Ironicly a month after he left me I finally found a doctor who figured out what I had, and recieved my diagnosis of CRPS; just two years after the initial injury on the job.
 
I would pick up the pieces of my life and go on. Friends and family encouraged me to go out with this man; said we were a good match. It appeared we were. My disability didn't seem to bother him, our boys all got along; life was going the right way. Then we got married, and the truth came out. There were alot of things that suddenly came to light, one of them was that my pain got in the way of his happiness; and yes, he said that to my face. He wanted me to give up /everything/ that made me happy -- knitting, beading, leather work, being a magician's assistant ... about the only thing he didn't tell me to give up was riding my horse. But everything I did caused me pain (well, duh, I had explained this to him! I also explained I had to fight my pain or risk losing my arm!!)  and when I hurt it made him misserable. I understand men like to be able to "fix" things, and with CP you can't fix it by conventional methods. You can be there, you can comfort, you can be a shoulder an emotional rock, all sors of thing, but they can't take it away and make you all better. Granted there are days when I wish I had a magic wand so I could make all the pain stop for everyone here, but that's just not possible. One night, in the heat of summer, I was so swollen and sore, like most people who suffer with CRPS I was so sensative that I couldn't bear being touched. Not realizing this in my sleep he just draped his arm over my side and over my arm. I woke screaming in pain, curling my arm defensively against my chest and saying, "Don't touch me!!!" He was furious. I broke into tears, apologizing, but the damage was done; he rolled away from me, wouldn't even look at me. I cried and sobbed, apologizing again and again saying maybe we could try a different pose, but he was adamant I just needed to give up all my hobbies and projects, that this was my problem, my fault, and there for I had to fix it; my pain was getting in the way of his happiness.
 
I still hear that phrase in my head at times. I remember I had suggested we switch sides of the bed so that I could possibly spoon behind him instead, but for some reason he couldn't sleep on that side. So he inisisted I spoon with him anyway, but that put my bad arm beneath me, and before long I had to roll over to ease the pain. I would even whisper in his ear that I needed to roll over, so he didn't get offended. Turns out it was a no win situation. It didn't seem to matter what i did, he'd end up mad at me. Eventually all the stuff built up and he decided that we needed to seperate; the day he moved out he went and got divorce papers.
 
I have been leary to let anyone into my life since then. I am lucky my family understands. It's taken my father some work to grasp what I deal with, and even my Mother who has watched me since the begining sometimes has trouble understandin. I think reading the article in Time magazine really helped them understand better, as well as some of the stuff I've shared with them in the last year. I realize fully a sympathetic support staff is so important to our mental and emotional well being, and that that can greatly influence our pain as well.
 
If your family does not understand there are several people on here that can direct you to some great links that help family and friends understand what we're doing with on a daily basis. Personally I'm partial to "The Spoon Theory".
 
Best of luck to you, and a low pain day as well.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Have seen several specialists; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 finally diagnosed CRPS - Stage 2
Permanently disabled, on Oxycodone and Celexa.
February 2011 successful SCSU trial
May 2011 SCSU implant surgery

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 4/30/2011 5:02 PM (GMT -6)   
Hi Nini. You need a great big soft hug ((((((((hugs))))))))) I'm so sorry that your mother said those hurtful words to you and you still have them come up in your head. I know how it is for a parent to be so mean. My father was verbally abusive to me up until the day that my husband and I married and I moved out of the house. I was 28. I didn't have cp then, but it still tore me apart. I hope you are totally able to put those words from your mother out of your head, but I know it will be hard. We're all here for you, dear one. I hope you're having a low pain day and that you were able to enjoy good weather at least. You take care. God bless.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Vannie
Veteran Member


Date Joined Aug 2010
Total Posts : 795
   Posted 5/1/2011 8:14 AM (GMT -6)   
I wonder why so many mothers are so harsh with their daughters. Seems like mothers are hard on their daughters, and fathers are hard on their sons. I'm sorry to hear you had a mother who was unable to be loving and compassionate to you. That is a hurt that takes a long time ot get over. I, too, had a mother that was the same. I had to stop being around here years before she died. My doctor actually adivsed this, and I took his advice. I still loved her, but I couldn't let her make me sick. I was an emotional mess until I realized that the problem wasn't with me. My mother has some "issues", and maybe she did the best she could. I don't know. I forgave her and went on with my life. You have been through so much. Please hang in there, and know there are people here who do understand, and who do care.

Peace,
V
Fibromyalgia, Inflammatory Arthritis, Osteoarthritis, Asthma, High BP, DDD, Bulging Discs in Cervical & Lumbar Spine, GERD, Prediabetic
Prednisone, Lexapro, Cardizem, Lisinopril, Advair, Lipitor, Vit D, Joint Supplements, Soma, Tramadol, Fish Oil Supplements
I take one day at a time, and try to save my energy for the joy in life.

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 5/1/2011 10:40 AM (GMT -6)   
rhaevin, thank you so much for sharing a story that is still painful and fresh in your mind, being on this forum and being able to connect with people llike yourself is more helpful than any head doctor could be., because once again we have walked in each others shoes unlike those who fortunetly have not have to endure what we live with every day.  my mother and i never got along after i became a teenager, actually as the middle child in between my sister who could do no wrong, and my brother who again could do no wrong, i was the "black sheep". i learned early that i was not going to get any attention for anything good i did, so i opted for negative attention. the most important thing i learned from my mother was that i would never be like her when i had children. at the age of 28 i met and fell in love with a man {it so happened he is a black man}, my mother was so angry with me she asked me why couldnt i have fallen in love with a white man. how do you answer that, you love who you love.,  when my oldest daughter was 18 months old he left me for someone else.  in time i met another man who also happened to be a black man. this time she completely cut off all contact with me, this man turned out to be the love of my life and we are still together our daughter (my youngest) is now 25 soon to be 26. my mother repeatedly told me she was not predjudiced, but come on, really. she did not even meet her youngest grandchild until she was almost 9 months old. its funny my mom was a church going woman, supposedly non judgemental. so many contradictions in her life, i realized she was terrified her friends from church would find out, and when that did happen, they were told that both of my girls were adopted, really this bold lie from such a christian. i am sorry i have rambled on. thank you so much for sharing with me, i dont know if i have expressed this to you but when i first got on the forum and read some of your postings i felt a real connection with you. thanks again, hoping you are having a very very low pain day and bless you.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 5/1/2011 2:07 PM (GMT -6)   
Thank you pebbles225, vannie and 9yrschronicpain. your input is so important to me, even so many years after my mom has passed (2004) i was letting her words cause me much pain. its so hard to hear from the people that you love and you hope love you telling you that you are a hypocondriac, (i sure thats not spelled correct but i think you all will get it) that you are lazy, get up move around you dont see me sitting around whining about my aches and pains and i am older than you. these were my mothers words of advice to me. i think the thing that really boggles my mind at the time she was saying these things to me, i was still working i had not gone on  disability yet, and spent more time on my job than i should have just having her words in my head. the other thing is i was a.t the time a construction inspector for the local water and sewer co. in two counties. every day i got up got my girls ready for school, had to be on my job by 7am, and my job consisted of many things all of which included walking, going in existing sewer main, existing water mains, etc. this was not a job that sitting was allowed, but of course i sat down from time to time, as time went on and i realized i could not do my job effectively, which was dec. 1999, i finally thru in the towel and went on disability. my mothers only feeling on that was she was embarassed, she was terrified one of her church friends would find out that she had a lazy daughter. it has taken me so many years to overcome her words, i mean im her child she could have supported me, but  that was never going to happen, and i have had to make peace with that. and with the help of all on this forum i have finally let it go. thanks so much everyones support helps me more than i can put into words. hoping all are having very low pain days, and gentle hugs to all, thank you so much you have made such a difference in my life.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 5/1/2011 2:44 PM (GMT -6)   
I'm so sorry that your mother said those very hurtful words to you. You're her child. How could she? And your children, they're her grandchildren. I really can't wrap my brain around that. I do understand where you're coming from though. I was very verbally abused by my father for years. He yelled at me and said just about anything you can think of to hurt me or put me down, etc. I"m glad that you have found some peace by being here. We all really do care. You take care, and I hope you're having a low pain day.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 5/1/2011 5:58 PM (GMT -6)   
Loretta, i hope it is alright that i use the name you wrote at the bottom of your post, but your responses to me make me feel so close to you, my given name is Kathy. It blows my mind that at almost 58 these thoughts were still in my head. thanks to you and others those thoughts will be a distant memory soon.  the biggest lesson i learned from my mother is how not to parent. my girls and i have a great relationship and always have, even during those sometime difficult pre-teen and teen years, i alway told my girls that they could tell me anything and i would never judge them, and that is a promise i have always kept. when my oldest told me at 18 after just graduating from high school that she was pregnant and wanted to have the baby, i told her what ever decision she made i had her back. and together we made it through and she had a beautiful baby girl, i remember my daughter telling me if i would tell my mom (her grandmother) that she was having a baby, i warned my mother that if i heard so much as one negitive thing she said to my child, she need not worry about ever seeing any of us. she was not happy, but as far as i know she said nothing as she was busy telling her church buddies lies like not only were my children adopted (because they are black) but now her grandchild was adopted. i must say that although i am a very spirtual person i am not religious, the hypocricy i saw in her church turned me off at a very early age. i dont want to say more as i know this is not a good subject for this forum. anyway i want to thank you for your kind words and i can feel the sincerity and the caring that i know is so real. have a blessed day and many many low pain days.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 5/1/2011 7:06 PM (GMT -6)   
Hi Kathy. It's fine. You can use my real name. That why i put it at the bottom of my posts, so anyone that wants to call me by my real name can. Of course, those that are going to be mean, I would rather that they not even reply to me at all. I haven't had that problem here at all. Everyone here is so great, as you can tell. Congrats on your granddaughter. My sister got pregnant at the age of 19 with my nephew and she wasn't married, so we all (me and my parents) just supported her in any way that we could. I'm really glad that you're making peace with the past, as I've already said. I hope you're having a low pain night. I'm not. There's a low pressure system here, and it's been raining off and on, and my back has been screaming at me. It's a bit better at this moment. You take care.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

sore42long
Regular Member


Date Joined Apr 2011
Total Posts : 235
   Posted 5/1/2011 7:26 PM (GMT -6)   
rhaevin,your story touched me ,I have thoracic outlet it took awhile to diagnose,lucky now the surgery will be going on soon. Ican do so much less then last year,The pain has tripled and the pain meds ,help a bit ,the Lyrica gave me a bad reaction ,the surgery has 80%chance of working but even using my left arm only ,the shooting pain from nerves also icecold hand on the otherside makes it hard to focus.I find sleeping is my only time Iam not in pain ,learning new coping skills and reading others stories helps so much,I have to look at the brightside ,the possiblity of surgery working is good.I feel my life is on hold now and Iam honesty finding it hard to get much enjoyment out of life being in pain so much ,do others find sleeping and naps helpful for coping,thanks michele

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 5/3/2011 1:47 AM (GMT -6)   
Sore, you're not alone. I find about mid-day I am so exhausted and in so much pain. I look at what I've done for my morning and feel I have accomplished little or nothing. In truth I know I've done much; especially of late, I've pushed myself to far and to hard. Most often my nap isn't something I plan. I merely lay down to try to relax and end up passing out. Yes, it's a wonderful escape from the pain, but if I forget a dose while I'm sleeping, or befor I fall asleep, I wake and regret it instantly.
 
Sleeping is another matter. Generally I can not sleep till I am exhausted and pass out, otherwise I lie in bed and merely toss and turn for hours. Sleeping in also isn't something that happens very often and for the same reason as my naps. I'm lucky if I get 6 hours of sleep a night. However my pain normally won't let me sleep longer. I have tried to "train" my body to not sleep on my right side, given how much pain my entire arm/shoulder area is in all the time. If need be I will take Valerian Root capsules to help get some needed rest. Also when need be I sleep with a feather pillow to cushion and cradle my arm, to keep it in a more "neutral" position even if I'm on my back. Usually when I go to bed one of my cats obligeingly curls up on my right side and I'm able to rest my hand/wrist on their body. Soft fur, warmth, and a gentle purr are comforting, and it's that comfort that aides me in falling asleep every night.
 
As for cold hand, I understand that all to well. I have several pairs of crocheted fingerless gloves from the same gal, who sells them on eBay. I even have a special pair she made me a size small so I can have some compression at times. I also have a pair of fingerless fleece gloves, and it's not uncommon to see me wear them around the house, and certainly in the cold months I always have a pair with me. Without the fingers I am able to still type and do things, but the rest of my hand and wrist is kept warm. I used to wear them alot because of circulation issues; my hands are always a bit on the cold side. Since my injury it's only gotten worse, as well as numbness and tingling in my fingers.
 
You need to find enjoyment in the little things. For me it's my koi in my pond, or the family turtles in the turtle pond we have. A turtle is incredibly zen floating in a pond, and I've always found watching fish swim to be incredibly calming. Also I have a bird feeder and a hummingbird feeder. I even leave a little pile of seed on the deck for one of the chipmunks who likes to sit up in the shade on the deck and eat. But I enjoy the bird song; the doves and finches, the sparrows, and recently the quail. Also time at my friend's farm every morning is incredibly peaceful too. Time around the chickens and geese, as well as my horse. And with it being spring there are baby chicks to handle and play with. My roses are another thing. Just the smell of them is something to enjoy, and tending them takes little effort on my behalf, but it gives me something to do, like the turtles and the koi; they've kept me going and given me projects and a purpose.
 
Find something to enjoy, it doesn't have to be big; you didn't need to take up quilting. Maybe knitting though; I use the knifty knitter looms since my hands won't work the needles anymore. I like to make scarves for friends and family in the winter, throws and wraps, and I even like to make no-sew blankets; they take very little work. Maybe take up photography, or bird watching. Maybe set up an aquarium, or volunteer as a dog walker at your local animal shelter, or if you're feeling ambitious, as a foster parent for your local shelter. It gives you a chance to have something to keep you busy and permitts you to do something good and make a difference in an animals life.
 
Just remember, through it all, you're not alone. *gentle hugs*

Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Have seen several specialists; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 finally diagnosed CRPS - Stage 2
Permanently disabled, on Oxycodone and Celexa.
February 2011 successful SCSU trial
May 2011 SCSU implant surgery
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