Our Forum

[Toomanyadvil]

Hi All,

       I have noticed this past month or so that out forum seems to be a busy one and none of us really know eachother.  We all weigh in now and again but thought it might be nice if we all finally met one another.

So maybe we can all say a bit about ourselves(whatever we feel comfortable with of course) Maybe what type of CP and for how long you've had to deal with it. It would be great to learn about everyone and maybe how someone else copes with there pain(like hobbies or the like)
I know that there is alot of traffic in and out of here and some memebers would only like a quick question answered. But there also seems to be a bunch of us that are here as forum members and in Chronic Pain.
I think it really helps to know were not alone and share the things we love to do and we havent lost to out CP
I'll start


I'm Toomanyadvil. I've had Chronic Pain for Endometriosis for 5 years and CP for Interstitial Cystitis which is a bladder condition for 3.
Because IC doesnt have any known cures but only treatments I have usually used medication to cope with my pain.
I also love to paint and Draw which really helps me get through on a bad pain day.
I really think movies are great when a bad day comes along..my faviorite movie is the Illusionist and the Mysts of Avalon(so long it takes up tond of time)

How do you cope with your pain when it gets really bad?

Hope all the regulars and newcomers can join in!

[Toomanyadvil]

Hi LouJack and Welcome!

Were so glad you found us here:)
It can be so hard to cope with the Chronic Pain and all it brings into our lives. I have found that connecting with others in CP has really made a difference in my day to day life. Sometimes family and friends as well meaning as they can be dont understand exactly what were going through or how it feels.
It sounds like you have suffered for many many years. I'm sorry you have had to deal with such severe pain. But it's great that your finally able to talk about it a little bit. That can help a great deal.

I too have been on many types of pain meds and found the only ones that really work for my pain are the ones that are narcotic. But I still hold out that they'll come up with  a non-narcotic option that may work as good!

You know, I've noticed through meeting many CP sufferers over the years that alot of us have cats. I love dogs too but really find cats to be more in tune to how were feeling. My cat will lay on my abdomen when I'm in pain(my CP is abdominal) or not leave my side if I'm having a bad day.
I've been told cats know when your suffering and instinctually lay on the area to make it feel better.
Everyday I'm thankful for my cats and like you there my best friends. My other one is cat a Daddys boy and attaches himself to my husband. He could take me or leave me!
Your Kitten must be sooo cute. I wish they would stay tiny and wildly playful forever!

I'm really glad you found us here and hope your able to stick around...we are a pretty good crew here. And I hope we can all learn alot more about eachother and how we cope with our day to day lives.


TMA

[loujack722]

i was reading all the coments today and hearing of all your pains and troubles. im sad for you all,and yet happy that you have found each other. i too suffer great pain, mostly in my legs and back.i was in a very serious motor bike accident over 15 years ago. had a kidney removed,spleen, bladder,and small intestined damage. femoral artary
surgery. this is the first time i have ever spoke of this.over the years ive had just about evry type of pain meds. the only ones that seem to work are the ones that are bad for me. anyway enough of that. i also have a kitten, his name is chase. he is a tuxido calico
and he is my very best friend. i hope that i can continue to feel well enough and find enough time to stay in touch with you guys.     p.s. i feel better already.

[Toomanyadvil]

I think it's nice you have a cat...infact, refreshing. Now if you said you owned a cat and you were a figure skater..I would wonder..LOL(no offense to any male figure skaters who may ever come upon this..:)..)

I'm so sorry to hear that you and your father are going through such a difficult time. It must be very stressful.

I like what you said about the internet. I've never thought of it that way. I guess I've lived longer with the internet than without it and take it for granted. Though you should see me throw a fit when we lose power and I cant use it!!

I've had such a hard time dealing with my CP also and all I cant do anymore. I used to love to travel and go to far off places or just get in the car and drive until I couldnt drive anymore. These days I'm lucky if I can make it to my DR's office and back without feeling awful.
I know I have been extreamly luck in the area of pain control but know that can end at any time and even fear that saying I know I'm lucky will set off some sort of Karmic domino effect and I'll be left in the cold like so many. I try never to take it for granted and remember how many people cant get help. I wish we could change it more easily than continuly writting out gov. until they pay attention to us.

I'm glad to get to know people a little more. Sometimes it feels so lonely just to come here and give only medical advice. I wonder sometimes if anyone is feeling the same way I do here or dealing with the same thinds in day to day life.

You have both inspired me to try and get down to the closet beach as soon as I'm able. I usually go to CT so I can bypass the city...not to mention how new yorkers feel about Jersey drivers...:):):) I'm sure I can exclude you from that!!\
I do love Atlantic City and the Boardwalk.

[thelonegunmman]

I'ma computer tech with cervical and lower spine issues which cause much pain. Some were degenerative, some, the docs tell, were just going to happen no matter what I did (cervical).

i like to go for long walks to relieve stress for the pain, or take a xanax if it gets reall bad.

I loike mountain biking which sadly, may have to stop, roller blading, hockey, guitar and reading tons of books.

i grew  up in jersey live by the jersey shore,, soi go to the ocean a lot, mostly a quiet spot at Sandy hook to meditate or hike.

I love music, have some really good friends I can trust and am currently helping my dad deal with his throat cancer treatments.

I  love the internet for knowledge accumulation research or just generally reading what people think. i think it's the most democratic, revolutionary it of technology since the printing press. I work as a computer technician/network administrator.

I plan on making a career change to become a college professor and teach history because I love o teach. taught computer classes to adults on unemployment for three years when i got the the teaching bug.

I'm single,have a cat,(I am a straight male, not that it matters but it seems to be the first question women ask me when the cat is mentioned),  the gender confused female cat named Otis) and I love doing things like seeing movies, live music, playing my guitar or remixing songs on my computer. I like modern, hardcore, hard rock, pop-punk and classic rock as well as classical. Country music made after1976 makes me ill.

And "No, I will NOT fix your computer"
LOL... i saw that on a t-shirt recently and thought it was funny.

My CP is really disrupting my lie and i'm having a hard time dealing with , especially since every doctor I deal with seems on the verge of labeling me a "drug-seeker", the insurance company too. Which is frustrating to say the least.

That's about it for now. I'm grateful for this board.

[Toomanyadvil]

Hi Gilly,
   Thank you so much for sharing a little bit about yourself! It's so great to get to know some others here:)

I'm so sorry your condition is a result of a dye you had injected before surgery. I can only imagine just how frustrating and angering it must be to go in for a surgery for something and come out with a life long painful condition because of it.
I never knew that could happen and am glad that I know now.  It's truely amazing how many things can happen that we just dont know about until they happen to us. I never even heard of IC before I got it. Who knew!

I can completely relate to the pain your explaining.That qoute is so powerful and defenitly describes what chronic pain can be like.
I have also heard my condition described in a similiar way.." pain is a more terrible lord of mankind than death itself" I think it was Albert Schweitzer who said that.
But those qoutes are both unfortunitly dead on.

It must be great to live so close to the coast! I'm always begging my Hubby to move us closer to the water. All we have are lakes...Lakes are nice but nothing compared to the ocean. My best years were living near Montery when I could easily drive to the beach and collect sea glass(I'm like a little kid on a beach filled with shells!!)
Such beautiful things can come from the ocean...
I'm so glad you referred to your animals as four legged kids! Sometimes I think people think I'm so stange that I consider my cats my children. I couldnt imagine myself without them:)

I hope your having a LP night and are enjoying the weekend!

TMA

[Ghilly]

Hi everyone.   I'm Ghilly, and I am a chronic pain patient because I have adhesive arachnoiditis, which is chronic inflamation of the covering of the spinal cord, with a buildup of scar tissue, caused by a reaction to myelographic dye that was injected for a pre-surgical test.  To nutshell it, it's a doctor-created, lifelong, incurable case of what basically amounts to spinal meningitis.  A doctor who suffers from this same condition has described it in his book as "living with the pain of cancer without the release of death".

I try not to let it get to me too badly, though.  I work a full time job as a manager of a hotel down here in South Texas.  An apartment with all bills paid (even my internet!) comes as part of my salary package so we live here as well.  We're on the Gulf of Mexico, so the beach is my favorite place to be when I'm not in the pool.  

My favorite hobby is crocheting, and I also love to cook and take care of my hubby and our four-legged "kids".  We have a small herd of cats, a collie, a turtle, a snake and a bird.