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Posted 6/3/2009 7:03 PM (GMT -7)
Hi !

Okay, have typed out intorduction sentence 4 times and erased it all 4 times...

try again..

HI! Im dani :O)

I am 28yrs. I am married and have 2 beautiful lil girls.

I have been told I am a "Chronic Pain Patient". I have often told those around me that I wish they wouldnt use that term it sounds awfull. Unfortunatly my pain psychologist (as always) had a zinger for a reply one day. She said, "Well of course it sounds awfull... it is.". Then she rushed in to the lesson for that day... as always with about a zillion lessons to fit  into a tiny time slot. *sigh*

I guess I could start out by saying I "suffer" from chronic pain due to.. what? Spinal deformity? Scoliosis? Degenerated Facets? those docs.. all those years of training and all I get out of them are the same 2 sentences I wish I never had to hear ever again...

"We don't know."

"Your so young."

My husband told me other day.. he said, "You look tired."

To which I replied,"Well, insomnia does that ya know..."

I have been in "Chronic pain" for a lil over 4yrs now. What started out as a lil circle of stinging and burning at the base of my spine... has spread through half my back. My hips ache with a relentless persistance. My shoulders and upper back require alot of exercises to keep functioning.

And function I must do.

I find it odd when folks ask "Can you work?"

Of course, it is either I go through a day and have to eat x5 , maybe vomit a few times, drink a whole lot of water and change clothes frequently (i really hate the perfuse sweating) or my children go without? Not an option! So i tuffin up and hope and pray im not damaging things too much. True, there are times I wish I had someone to help, someone to "call in sick" to. Sometimes just someone to talk to. Maybe that why I found this forum. Who knows? I am VERY suprised to see so many chronic pain patients. I am .. well intrested, to read about the obsticles others have faced...

(Oh and I have horrible spelling, grammar, and ramble on and on can you tell?) On that note.. I just wanted to introduce myself and say "hi".

greatful and relieved to find this forum.

blush

*huggs*

dani

 

Posted 6/3/2009 8:06 PM (GMT -7)
Welcome Dani. That is a wonderful name. It happens to be my wife's nick name. Her name is Danyel but was always called Dani. Already you are ok. As far as rambling, mis spelling or the always difficult grammatical errors, we simply don't care. You do not need to know how to spell, write or be politically correct to join here. Unfortunately, the only membership dues are CP (Chronic Pain) we usually don't spell it out as it is a pain. Yes it is terrible that you live with such a horible thing being you are and having to work and take care of a fmaily as well. We all have our stories and no matter the age, no matter what responsibilities one has or what we have tried, CP is not a respetor of persons. It is an equaly opportunity destroyer. What you will find here is a wonderfull group of people that understand and care. We come from many different walks of life, some work others can't and some of us probably don't want to but do. How old are your girls as that can be difficult or at times helpful depending on age. I hope and pray that you husband is very supportive but the reality is most people who don't suffer with CP, don't and can't fully understand. Some of us are regular night owls as sleep is not easy to find. My advise to you is read a few posts and just add a few comments. encourge someone and we all share our experiences and any advise that might be helpful. I will close for now and look forward to getting to know another wonderful person who joins in the struggle. Blessings!

Posted 6/3/2009 8:35 PM (GMT -7)
Hi Dani and welcome to the family!! I am very glad you found us and decided to join in. This is a wonderful bunch to hang out with and you will find that the folks here really do care and understand what you are going through.

We don't mind babbling on or anyone's grammar or spelling. As long as the idea comes across that's fine by us. Pain does awful things to the mind as well as the body. It takes wonderful people and pushed them to the edge but...ya know, with the good folks here we can all learn to have a great life!

Hugs,
Chutzie
Co-Moderator Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
***************
Happiness is something to do, someone to love, and something to hope for."
(\__/)
(='.'=)
(")_(")

Posted 6/3/2009 9:43 PM (GMT -7)
I also want to Welcome you to this forum Dani, when you said you wish you had someone to talk to, and maybe that is why you found this forum. Well what ever the reason is that you ended up here, you really couldn't have ended up in a better place. You see here there arer people that understand what it is like to be in pain, we don't sympathize with you anybody can do that! We empathize with you, and that is a very big difference! because we know what it is like to have pain! so we can share in grief and frustrations and some times we might have suggestions that might help, sometimes not, but we always have an open ear, and we are always here willing to listen, and give you support! I really don't think you will find a more caring and compassionate group of people anywhere! Dani Welcome to our family!

Whishing you only the Best!

White Beard

  I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV

Posted 6/3/2009 10:04 PM (GMT -7)
Welcome Dani;

                      I'm glad that you have found us here at Healing Well, I think that you will find this forum very helpful with everyday problems that all of us who suffer from chronic pain experience, The best part about this "family" is that we give you the advise from experience because we all suffer from cp, sometimes you won't like the advise and sometimes you will, that is what Set's this forum apart from all of the others, the honesty nothing is candy coated here and everyone truly tries to help you with any and all questions or problems you mite have. I have received nothing but great advise from everyone here,

                     Sam 

tying to make it one day at a time....corney right

Posted 6/4/2009 12:43 AM (GMT -7)
Hi Dani, I would also like to welcome you to the forum. I think you will enjoy being a part of this family. It is unlike anything I have ever known. Everyone really cares and is eager to lend an ear,offer support and encouragement. And it really does help alot to know you are truly not alone in this chronic pain. You have all of us!!! I am glad you found the forum. And I hope it is everything to you that it is to all of us. Feel free to post as often as you like.
Anice
Posted 6/4/2009 12:57 AM (GMT -7)
Hi, Dani,
I also wanted to welcome you to the forum. It's late and my eyes are kind of crossing, but I see you're online, too! I hope you're not one of us who has trouble sleeping, but you won't be alone if you are!

Next time I hope to be able to respond more specifically, but I did want to add my welcome.

PaLady
Posted 6/4/2009 6:06 AM (GMT -7)

Hi Dani,

Welcome to our FAMILY!!  Unfortunately we all understand how you feel!  Most of us here have been given that dreaded diagnosis of CP!  No matter the cause of our Diagnosis, the emotional turmoil we face each day and the limitations we experience are understood very well here on HW!  You have found a home with us and we will be there to help you as much as we can!!

Again WELCOME and I look forward to your future posts!

XXOO
Patti

Posted 6/4/2009 7:13 AM (GMT -7)
Hi Dani, welcome!!!!

I am not a young mom (36), but i do have two young children (5 and 2). I am a stay at home mom and suffer from chronic pain. Like u, i CAN:T call in sick for work. Thankfully my mom has really stepped up to help out after two surgeries in 16wks has really taken it's toll on me.

Everyone here is wonderful! I hope u will find the support you need! Nice to meet you!
Jan. 2009, complete hysterectomy, diagnosed stage 4 endometriosis & adenomyosis (age 36)

2003, dx moderate UC

2000, dx selective IGA deficiency w/ anti IGA antibodies

2000, dx Antipholipid Antibody Syndrome

1999-2009, chronic hemmoragic ovarian cysts, w/ partial ovary removal

1977, complete reconstruction of foot after lawnmower accident (chronic pain)

 

Meds

6mp 75mg, prednisone 40mg (just starting meds again)

percocet 5mg 3x day

potassium 3x day

 

Posted 6/4/2009 8:12 AM (GMT -7)
Howdy, Dani and welcome...
You've found a good place with lots of nice people, whom have been there and done that, I've been a stay at home mom,
now to a soon to be college girl, woohoo..and it sure can be ever so hard raising a child and having chronic pain.(for which we derserve medals for)
anyways, sorry got outta context, wanted to says welcome..
Lots and lots of soft hugz and hopes that you get a low pain day soon...
((((((((((((((((Dani))))))))))))))))))))))))))))))))))
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

********>^..^<********>^..^<********>^..^<********

Posted 6/4/2009 6:55 PM (GMT -7)
Thank you all for such a warm welcome :O)

Fatherjohn,
My busy little bumblebees are 5yrs and 8yrs (and Geminis to boot!)
My husband now, is very supportive. Unfortunatly, I lost nearly all contact with my "friends" while struggling with re-learning to live my life (no easy feat, i assure you). It took all that I was as a person to be strong enough to forgive my husband... I was told things , unfortunatly and treated badly for quite some time by all those around me. Out of all I was told.. my favorite..?

"I'm sorry, so sorry Dad (hubbys father), I DO want so much to do all this for him still, but i cannot make my body GO! I dont know why, im sorry I just cant make my darn body go."

"If you could just do whatever it is you need him (hubby) to do and be indifferant about it that would be great."
Was told to me in refrence to my yelling at hubby for not helping me with yard work (just burning the weeds, i wasnt shooting for an oscar his first time out)....

By the time he realized the doctors couldnt "just fix" something they called levoscoliosis.. ( a "structural" problem they said) I had already been recieving treatment for a year. There he was crying to my spine specialist. There I was wondering where the heck hes been.. wadda re ya NEW?

In any case, I was very plain. I told him that I was sorry I couldnt be the person that he needed, if he wanted out of the marriage I completly understood. I would miss him very much. But that I really would be very happy to live in a lil apartment with too many cats. BLISS! I tell you.
In anycase since then hes been increadibly supportive and it seems, now, like weve.. I donno, Accomplished something, like there are no boundries no matter what. And here I go on rambling again.. Im so sorry I do that alot.
:O)

So to answer your question , yes, he is very supportive now. My lil girls arnt completly in the dark either.. but whats goin on with mommy is explained in terms they can understand. They know my doctor and like him very much. They know mommy has to visit the doctor and that he gives mommy special medacine so we can play and have fun. More recently, I have been letting them help in preperation of "mommy s medacine appointments" (spine injections). Im usually down and in bed for a day.. and I dont mean to put my poor hubby down, but oh my goodness how does one start THAT many fires in the kitchen?? Hes up to x3 now! safer for the whole neighborhood I prepare the meals ahead of time... besides the girls make a tedious chore much more fun :O)

*huggs*
dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood

Posted 6/4/2009 7:03 PM (GMT -7)
PaLady,

Hehe, I dont know why I forget to take my medacine at night!
This is how it goes
My computer becons me with a concophany of information that I of course must learn all about...
then suddenly its 1:30am

Hehehe

*huggs*
dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood

Posted 6/4/2009 7:09 PM (GMT -7)
Shannon,

I loved the 2yrs stage for both girls, but my gosh they are so busy and curious at that age. I had increadibly hard time keeping up with lil rosie at 2 and i cannot imagine how you do it! I saw this sign on side of a van the other day , was funny it said "Rent a Husband!" "For all your plumbing, reapr, ladscaping.. etc" . What we NEED is a rent a mama. "for all your laundry, toilet training dish washing needs!"
*huggs*
dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood

Posted 6/4/2009 8:10 PM (GMT -7)
Dani, it sounds like you are fighting with all you have. It is not easy. In one sense, it is great to have the kids around as they can keep you from constantly thinking about the pain. At the same time, it is tough as you would like to do more with them. My youngest is 18 but I started this painful trek 11 years ago. I know my family accepts the fact that I have limits but that does not change the fact that I don't feel as involved as I would like to. I know my wife gets tired of my sleepless nights and she knows I have no control over it. Even my best nights are restless and it keeps her awake. All I can say to encourage you is that as those around you adapt to your limitations, they accept the fact that the limitations are not your fault just a fact of life. I do alot of introspection and have started several threads on this forum to help myself and others ask some of the difficult questions that we face on a daily basis. What type of imjections are you getting and do they help for very long. Many of us have had epidurals but the results are varied.

Posted 6/5/2009 12:16 AM (GMT -7)
Dear Fatherjohn,

My injections... I know he uses combinations of things, i know that the injections arnt always int he same locations along the spine each time. When I get out I remember very little, I know that sometimes i remember crying and I think I hear people talking to me? In any case, when its over, then nurses fuss with me a bit and there are tender injection sites on both sides of my spine take up lil less than half of my back, basically all lower back area and couple below the base spine. Those injections makes the "stinging" go away. The stinging isERY intense and it can make everything swollen, tight, and make the muscles sticky, to where they stay hard. that is what injections are for. When I do have flare up during the shots, I feel something differant. It is a stiff ache of sorts with a lil odd feeling of pressure under the skin. Sometimes the sides get a lil sore.. like say.. if you had done yard work. Nothing major. The injections are one part of a .. kinda detailed pain management programm. The Injections lasts about 2 and half , sometimes three months. But, I wait as long as I possibly can. I donno, I still,LOL, LOL I guess just hope that maybe one day I wont have to go back. This last time, I was very tired and he kept trying to get me to schedual the appointment while he was there and not wait. It funny I remember telling him, "But I dont want to come back to see you." Then I went right to sleep. Bless his heart, couldnt have been stuck with a more unwilling patient if hed gone in search himself. He works so hard, I cant imagine what a day for him must be like. In any case, thats really all I know about the injections.

*huggs*
dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood

Posted 6/5/2009 1:24 AM (GMT -7)
Dani, I am so glad that the injections are working for you. I had them and it was a total waste of time. It was so painful to lay on the stomach and have them prep and then do the injections. After all that there was no noticiable effect. As long as they are working for you, keep them up.

Posted 6/5/2009 9:53 AM (GMT -7)
Dear Fatherjohn,

The nurses.. boy those ladies are on the ball, I cant say enough good about em. Well, they fold these blankets up for under my stomach, use these lil round pillows for my feet, odd lil plastic feeling pillow for my head. You should see these ladies in action. I have met some folks, like you, and the injections dont work for them either. I met one really awesome nurse that had something that caused fractures in his spine, he said. That he wished they had worked better for him, his only took away 30% of pain. 8O(

*huggs*
dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood

Posted 6/5/2009 3:58 PM (GMT -7)
SorrY I haven't welcomed you yet been at work all week.

But anyhoooo Welcome Dani and I like that name also. I came here a few months ago with the same feeling you had. Just needing to talk to someone. I googled my illness's and crossed a link to Healing Well. I never knew there were others out there who feel the stains from pain, who just want to throw their hands up and say I give, people who also take each day as they come with the pain and responsibilities and people who I can grow to love.

I found it!!! Right here with all my friends. It doesn't matter what is bothering you, there will always be someone who understand and will listen to you rant and rave. I'm glad you found us. I can't say I understand with having little children. I have teenagers but dreaming of grandchildren. But I could just imagine the struggles you go through dealing with the pain.

But WELCOME and please stay with us we would love to hear how those wonderful girls grow and mature.

Laurie
39 yr young female with,

Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........ I think I have it all

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