Tammy Sue you are not a useless piece of waste but I know how you feel. What I like about this site is that all though many of us are in chronic pain, it does lift your spirits. I like when one can find humor to cope. I am in another private group for those who suffer from pain but do not often go to the site because it seems that everyone wants to talk about how miserable their lives are and how to get on disability which I am not interested in. Here there is hope and empathy and information being shared. I am also very thankful for this site.
Thank you Seenie! I didn’t look at the date of the post. I don’t know why it would end up back in the front of the discussion list. It made me feel really hurt and angry that someone would post like that.
Thank you! Yes I love this site! It is the first thing I do every morning is check out the new posts.
lucia said:
Tammy Sue you are not a useless piece of waste but I know how you feel. What I like about this site is that all though many of us are in chronic pain, it does lift your spirits. I like when one can find humor to cope. I am in another private group for those who suffer from pain but do not often go to the site because it seems that everyone wants to talk about how miserable their lives are and how to get on disability which I am not interested in. Here there is hope and empathy and information being shared. I am also very thankful for this site.
I agree with everyone here! It is a wonderful relief to share with others and realize that your symptons, weird sometimes though they may be, are/have been experienced by others. I don't think anyone here is dispensing "medical advice" but rather just sharing what things have worked for them and wishing one another the best. We all realize that we have widely varying medical histories, etc., and with that realization comes the sharing of experiences with different products/medicines in the spirit of caring and sharing.....not attempting to replace one's rheumatologists and other medical doctors. I know of no one on this site who has ever tried to represent themselves as such. I have found this to be a place of deeply caring people who seek to help each other not hurt anyone. Great site!! :-)
Hi TNTLamb! Is your PhD in Research Metrics?? I'm currently working on my dissertation for a doctorate in Education. I was admitted to candidacy in December and can finally see the light at the end of the tunnel............and then PsA! What fun! Thanks for your many helpful posts!! They are always highly informative and, I'm sure, helpful to many of this site! I've had such a great experience on this site and have found so many wonderful people who have shared their knowledge and experience with PsA! Best wishes! :-)
tntlamb said:
You do realize you can't get a prescription for anything from an online support ( well except for phony viagra from China) but have to ask your doctor for it right? As far as supplements, diets, heating pads, stretching, alternatives, exercise etc. you don't need a Doctors advice right? In fact most will say if it works whos to knock it.
And the post that set you off was pointing out the well established (and published) protocol of PsA treatment also pointed out that changing doctors can severly delay getting treatment and/or losing a Dx which is very hard to come by. Some folks on these boards have spent years trying to get a Dx,
Also a vocational masters degree to advise teenagers to use condoms and fat people to lose weight is no substitute of shared experiences of people suffering years with a disease. I think it was in Tommy Boy where it was said if you want a good T-bone you don't need to shove your head up the a** of a cow, you ask the butcher.
And then I shall apologize, I don't often get mad, but I have been fuming for 4 days.
Thank You,
TnT Lamb (and FWIW - MBa, PhD (Research metrics,) PsA sufferer 40+ years)
Hi TNTLamb,
You know, I always wondered about that....why those with a Juris Doctor, or J.D. degree (law degree) are referred to as "counselor" instead of "doctor" when the program is roughly 90 hours. Oh well.........I have a Master's in Sociology, Principal Certificaiton (another 30 graduate hours in Educational Administration) and hope to graduate in August....no later than December, '13 with an Ed.D. in Educational Leadership. None of which helps me any with my PsA, knee pain, back pain, scalp psoriasis, etc.! Hahahaha!! It is indeed the great leveler.....someone said that in an earlier post. Nonetheless............I LOVE this site and all the wonderfully helpful, caring people on it!! Best wishes to us all for pain relief, peace and tranquility!! :-)
I have an appointment tomorrow and will get back on MTX (Fooey! Spring Break is next week) and likely begin Humira! Hopefully I can begin the MTX AFTER Spring Break! :-)
tntlamb said:
It was a Joke, sorry...... You ought to hear the jokes about JD (the only masters degree that poses as a doctorate)
A vocational masters degree BTW is one that finally qualifys you to do something. A business administration degree for example is a "do you want fries with that" degree. Once you go to business school, you might get something beyond a mid-management position in a mall store
Beautifully stated Gelita!!
Gelita said:
A support group is a place where people have some common ground that ties them together and helps them cope. You are correct. To get diagnosed and prescribed, you need a professional. To get support, get a group of people who know what you are going through. Have you noticed how an ad must note that they paid to endorse, but a testimonial ad does not need it? That's the power of sharing experiences. You are comparing apples and oranges. They are both beneficial, yet none substitute the other.
I have a psychiatrist because of my level of pain. He got glad I was in this support group. It has helped me more than opiates have. When we are weak, unity makes us strong. I pray you get from it as much as I get, if you have PsA.
Excellently said Trish!! Couldn't agree more!
trishdett said:
i just read all the posts on here and let me just say WOW!!!!!! Angellee this is a support group and you are not supportive and in my opinion YOU are causing us that have PsA more harm than any SUGGESTIONS or OPINIONS could ever do on here. I do not have any Letters following my name however I have PsA and thats all i need to know and without this SUPPORT group I would lose my mind its hard enough to get thru life with PsA - I think all would agree with me on this one... if it wasnt for this support group we would have NO sense of understanding and empathy which i think is what gets us to keep our lives in check.
Hi Louise! Glad you found us............and welcome aboard! You are DEFINITELLY NOT alone! :-)
Louise Hoy said:
When I came across this site ( just recently) and read of others pain, suffering, frustration and words of comfort I cried............I cried like a baby! The realisation that here were people who know! I've had psoriasis since I was 12 and pain since my early 20's and I've survived on my own and yep, sometines its been dark and lonely. That's why I love this site and the people on it have welcomed me and I feel at home.
The insight into this condition gathered from the sufferers here is priceless, it helps, supports and nurtures self-effacy which is never and can never be a bad thing.
Thank you for the support help and advice fellow sufferers x
Sounds great Chris!! I'm in! I'll be doing a few surgeries for free in my garage this weekend too if anyone is interested! Hahaha!! (TOTALLY kidding! :-)
Chris said:
I have a wonderful recipe for an ankle operation if anyone is interested. You just need a hammer, a rusty knife, some twine, a box of toothpicks, and a steady hand. It only takes a few minutes and will save you a ton of money. ;)
Hi GrumpyCat,
How dare you dispense cat litter advice!! What Feline Sanitation degrees do you hold qualifying you to share your thoughts on cat litter??? A travesty!! Hahaha!! Totally kidding! :-)
Many of your posts have been oh so helpful too!! By the way, what brand of cat litter do you use??? I have two little babies (cats) Snuffy and Fluffy who I love very much! :-)
GrumpyCat said:
PS.
The last advice I gave on this site in regards to which brand of small animal litter I prefer. Dangerous stuff here.
I agree Lucia and Tammy Sue!! This site really does lift your spirits! Remember how funny Robert's picture was!! Hahaha! I still go back and look at that one because it makes me laugh. Laughter, in itself, is very therapeutic!!
lucia said:
Tammy Sue you are not a useless piece of waste but I know how you feel. What I like about this site is that all though many of us are in chronic pain, it does lift your spirits. I like when one can find humor to cope. I am in another private group for those who suffer from pain but do not often go to the site because it seems that everyone wants to talk about how miserable their lives are and how to get on disability which I am not interested in. Here there is hope and empathy and information being shared. I am also very thankful for this site.
Do you do knee and ankle draining? Do we need to make an appointment or is it first come first serve??? LOL
Sherry said:
Sounds great Chris!! I'm in! I'll be doing a few surgeries for free in my garage this weekend too if anyone is interested! Hahaha!! (TOTALLY kidding! :-)
Chris said:I have a wonderful recipe for an ankle operation if anyone is interested. You just need a hammer, a rusty knife, some twine, a box of toothpicks, and a steady hand. It only takes a few minutes and will save you a ton of money. ;)
In my opinion hearing from those that have actual experience with this disease is just as valuable as a doctors opinion.
The Rheumy has the textbook knowledge but not the first hand experience living with PsA or taking the medications. Keep in mind that the doctor (if he/she is any good) must also interview the patient and take their feedback into account. In that way they are making decisions based on the person in front of them rather than a dated textbook description.
This post discounts the collective intelligence of this site. I have a great deal of respect for those that take the time to share their experience and knowledge of this disease.
Cindy
17+ years in the ICU
CRTT, RRT
Occasionaly those psoriatic big toe toe nail get ingrown. Just trust me on this no matter HOW MANY times you have watch them get removed, and how easy it looks. Ice cubes are not a substitute for a local anesthetic, nor do an exacto knife and pair of needle nose plies substitute for surgical instruments, and self surgery does not save any money. I'm just saying, OK?
Debi said:
....... I have never seen anyone suggest the patient go do their own thing. R..................
If I have to rely on the medical profession to fill in all the gaps I would still be waiting for answers that have never been forthcoming. This site has helped me understand so much about this auto immune disease. No doctor seems to have the time or see the necessity to do this for me.
My 7 minute appointment with my Rhuematologist every four months is not enough for me to understand what is happening to my body. My appointment time is taken up reading notes and looking at my blood test results and writing new prescriptions. Absolutely every thing is based on my blood tests results.My actual symptoms do not matter and after my initial diagnoses seem totally insignificant and I no longer bother to mention them.
I would not have been able to accept this treatment and once was very frustrated and what has helped me is the knowledge I have gained from this site and now I see my appointment as re-newing my prescriptions and changing what is not working for me..
I am someone who slipped through the cracks and did not get diagnosed until I was so bad and I had suffered for at least twenty five years and maybe I have had PSA for double that amount of time and back to my childhood. I have always been under the care of a medical doctor with these same symptoms with my first diagnoses as being growing pains when I was a child.
Finally a Podiatrist recognized what I had from my swollen sausage toes then finally I saw a third Rhuematologist by that time it was so obvious seeing my deformed toes. I have had the same symptoms since I first saw a Dermatologist for my Psoriasis skin 17 years ago. Finally after all this time my medication for PSA is clearing is clearing up my skin. To find out there has been medication around for all this time and I was not prescribed it, makes me angry that I had to put up with this for so long.
From my experience I have found that Doctors have forgotten the art of being able to diagnose and the only way this can be done these days is with tests, xrays and ultra sound, scans etc. I so often feel as though I was are not believed, I don't look sick, until a doctor can prove a diagnoses with a test result. Have you got any idea what that does to people and the worry and the frustrations it causes. There are no specific tests for PSA only indicators and therein lies one of the biggest problems patients of PSA face. This has been my experience and I know I am not alone.
Then we have to go through this trial and error process of trying medication which have little or no effect, but doctors have to get us to try them first, they never seem to work on anyone with PSA. We have to go through this process before we can get medications that do work. The years of suffering and frustration and in the meantime this site helps people and gives them hope. This comes from the personal experiences of others. What is wrong with that. Most people say this is what worked for me or this or that happened to me. We don't try and tell people what they have to do. Only the information is provided and most people ask for advice, thoughts and want to know about other peoples experiences. Everyone does not always need to follow up every tip with their doctor but they do when it comes to medications as only a doctor can prescribe them. It is more about knowing about other medications and bring it up for discussion with their own doctors.
We do have moderators and so far this information about our disease has been accurate. If we were provided this information from out doctors, this would not be necessary.
This site is the only place where people understand what we go through and most of us are not whingers and yet it is ok to vent but it is only occasionally from most and when they need support. I have not come across a doctor that shows me any support.
It would be a greater benefit to use this site to gain an understanding of our frustrations and the pain people suffer and the difficulties we face getting diagnosed and the right treatment and to try and work towards helping people with PSA..
I feel that the medical profession falls a long way short of giving satisfactory service and if it was any other service industry I can assure you I would be demanding my money back.
The problem that I see with Western Medicine is that the whole body is sectioned up and given different labels and different names for a health problem. A different name for a different place in the body even though it is the same thing. Doctors seem to forget to join the dots because it happens to be outside of their specific field it becomes irrelevant. To add to this problem there is very often a lack of communication between all the treating doctors and conflicting ideas to confuse us patients even more.
I hope this gives you a better understanding of this site. These are just my opinions from my experiences and what I have read about others on this site. Hopefully you will get a better understanding from the patients perspective. You don't have to worry, we all have to go and see our doctors.
I do understand where your coming even though I believe you have not fully understood the benefits of this site. I hope that I have helped you gain a better insight into the benefits and reasons why we use this site.
Oh Bella, I'm so sorry you had to go through this such a long time before finally getting a formal diagnosis and proper treatment! I'm glad you're here on this site and learning a lot from it. I've learned and continue to learn so much here. Just everyone sharing their experiences helps so much too. Best wishes!
Yeah I can prolly do that for ya. I'm assuming all I need is a chisel and some straws. I'll only charge $20.00. $10.00 if I'm drunk. Just go the back door and knock three time's. When someone answers just ask for the doc. I'll be up shortly. :)
Actually I always thought providing medical ADVICE was kinda the point of these types of boards. Notice I highlighted ADVICE. Advice is just that, advice or opinions. I think it would be quite different if people were running around here saying you MUST do this or that. I have not seen that on this board.
Tammy Sue said:
Do you do knee and ankle draining? Do we need to make an appointment or is it first come first serve??? LOL
Sherry said:Sounds great Chris!! I'm in! I'll be doing a few surgeries for free in my garage this weekend too if anyone is interested! Hahaha!! (TOTALLY kidding! :-)
Chris said:I have a wonderful recipe for an ankle operation if anyone is interested. You just need a hammer, a rusty knife, some twine, a box of toothpicks, and a steady hand. It only takes a few minutes and will save you a ton of money. ;)
Hey Chris, money is kind of tight so I'll take the $10 drunk rate knee draining! Thanks for offering us a savings! Isn't it wonderful how we can get all these medical procedures done at a fraction of the cost just by joining an internet support group! Wow! This is great! Oh, by the way, is there a $5 rate if you're only semi-conscious, drunk and sleepy?? Is so, put me down for that one! Then I'll have enough to get some nice, healthy McDonald's food afterward. Hahaha! :-)
Ok, I'll be the drunk at the back door! Just open the door and roll me in! LOL
Yes, I have learned more from here than from my doctor that is for sure!
Chris said:
Yeah I can prolly do that for ya. I'm assuming all I need is a chisel and some straws. I'll only charge $20.00. $10.00 if I'm drunk. Just go the back door and knock three time's. When someone answers just ask for the doc. I'll be up shortly. :)
Actually I always thought providing medical ADVICE was kinda the point of these types of boards. Notice I highlighted ADVICE. Advice is just that, advice or opinions. I think it would be quite different if people were running around here saying you MUST do this or that. I have not seen that on this board.
Tammy Sue said:Do you do knee and ankle draining? Do we need to make an appointment or is it first come first serve??? LOL
Sherry said:Sounds great Chris!! I'm in! I'll be doing a few surgeries for free in my garage this weekend too if anyone is interested! Hahaha!! (TOTALLY kidding! :-)
Chris said:I have a wonderful recipe for an ankle operation if anyone is interested. You just need a hammer, a rusty knife, some twine, a box of toothpicks, and a steady hand. It only takes a few minutes and will save you a ton of money. ;)