Hello, My name is Michael I am a 54 ( I think ) year old male...don't worry, I know I am a guy! Since there is no spell and grammer check here you may find something to chuckle about..and I am truely a modern hillbilly..I live in a cabin, live off the land and yes...I do eat road kill. It is 11 miles to a paved road and the nearest town is very small and a even smaller medical center. I suppose some of you will think this b.s, living in large city's and living "on the edge" but I have to thank God for the wonderful life I have been blessed with. I hope that this forum can give some advice and let me whine and vent. Let me first start off with the Dr's in this area are fossils..two of them are MD/VDM. More than 15 years ago I had a dx of Ra. At that time both the dog and I were on remicade. Hillbillies use home medicine and dentistry, mostly due to the lack of insurance. So about three years ago the joint pain was so severe and my hands are getting deformed..they point outwards about 45 deg and my fingers are crossing under each other towards my little finger. The thumbs point out 90 deg starting at the first knuckle. The Dr that saw me did a blood draw and gave me a script for oxycontin to help with the pain...which darn near killed me. Dang, I mean I was see'n the light and had a foot in the hole ! And to think childern are killing each other for that stuff...what a shame. So I call the doc and told em what happened so he sez lets wait for the labs to get back...the whole time thinking to myself....nothing moves very fast here execpt the beer...and no I dont drink/drugs. I get a call from Sue and was told labs are perfect.." your fit as a horse" I told her that I never seen a horse couch tater before...send me somewhere I demanded. She calls back and schedeled a visit to the squeak and creak clinic. So I see a pa..she looks at my cuticles and feels a couple of joints and sez I dont have RA and that my labs are boarderline...come back when they are elevated,and did a blood draw. Came back..SJS,HCV. Now I am being sent to a pain clinic...is this right?
I am sorry to hear your story. As I have said before I do not like welcoming people to this board but I am glad that you found it. There is some good information in the archives. You can check out my website for some alternative treatments. You can see below what I have and what I use. Whine all you want. It is okay. I don't have enough bread and cheese for every one to party. But others may have some. Be kind to yourself.
The way your fingers are pointing made me think of Hammer toe. Joint usually in big toe goes sideways. I think it is genetics or "old age' LOL. Yeah 54 is starting to get old -durn anyway.
Well, you might be to the point where you need to go to the big city and see a good dr. I would recommend a teaching hospital - less idiots and fossils and they like puzzles. Some have free clinics so write em to check it out. Heck check out the government programs too as it sure seems like you'd qualify - yeah its a hassel w/paperwork but most of it is the initial paperwork stuff. Once you're "in" it gets a lot less. i know it is probably hard to ask for help but durn you need it and deserve it! Also you gotta be a little proactive (ie pushy) with the doctors sometimes or they will just brush you off - which seems like what you got. Also like Joe said, check out the alternative treatments as some have had good results with that.
Good luck Hairball.
Hi Hairball,
Let me also welcome you to the SJS World! Please do look around as there are tons of topics and so much information it's almost scary! :D And let's not mention all the wonderful members here (shhhhh...that's a secret between just us, right? ;) :)).
I'm sorry that you're having a hard time, and that your doctors are a bit on the prehistoric side, but I'm glad that you're pressing for better treatment! Pisces is right, please do checkout a teaching hospital or a major medical center as they do tend to have cutting edge doctors around them.
Again, welcome, hang in there, and take care of yourself Hairball -
Patze
HI, my name is gen i was diagnosed appox a year ago, ive been in living heck since. shuffled from one doctor to another. i feel like i am being used as an experiment, they have had me on narcotics right now for the horrible pain. i need to find a doctor that knows about my disorder and help me not harm me anymore then i am. i have children to take care of a husband and i can hardly get up for any length of time. i am looseing hope, there has to be help to quide me in the right direction. i live in california, thanks for listening if anyone can help me please do. thanks
Hi Hairball :)
Welcome to Sjogren's world. You're certainly not the only male in the forum. (I'm not male but there are several guys who are regular posters) Have they x-rayed your joints to see what they look like? SjS causes inflammation but doesn't usually deform joints. It's not unusual to have other conditions, such as RA, alongside Sjogren's.
I hope the pain clinic can offer relief other than something that's likely to kill you! There are a lot of painkillers out there and different nmeds suit different people. I'm surprised that as you've been given a dx you haven't been prescribed Plaquenil or anything. I'm not a medic though, so that is just my personal opinion - not advice!
I hope you find the forum useful.
Take care - Scottie :)
Hi Gen :)
Welcome to Sjogren's world. It's hard work looking after a family with SjS, Been there and done it but I didn't have a dx - the family just figured I moaned a lot and was lazy.
you have a dx so you need to put it to the family that you need a bit of looking after too and you really need some help and understanding! Even 4 year olds can make sandwiches!!
You mentioned being on narcotics for pain. Have they put you on any other meds to resduce inflammation? Do you have eye drops and suff to help with salivation?
We're here for you in here. Hope you find the site useful.
Take care - Scottie :)
Hairball,
You cracked me up, boy that post was funny, one that I can almost relate to!! I don't live in the smallest town, not the biggest, but we do at least have something in the way of humane care and when that don't work out so good I mosey myself right on off to the big city! ;D
You my kind of funny! Ma you know it's bad when the dog is getting the same medicines as YOU! ;D :o!!
You did right in telling that chick to send you some place else if they pronouced aclean bill of health your doggone hnds and toes are twisted every which-a-way, plus darn near killin ya to boooot!! ??? ??? ??? ??? ???
Where is the nearest big city to ya?? I sure would take that advise and go to a teaching hospital, one that don't mind learnin a thang or two!
Don't know much about it, but dx of RA sounds more in line with your distorted digets than sjogrens, but gone and take yourself on over to the big city and get it a good lookin over, make sure you keep us updated.
Gen, Girl, You will be O.K in time, once your med. get sorted out and you develope a reasonable level of acceptance,ou gonna be alright! As far as your family goes, well I think alot has to do with them and you, how well they want to understand and how well you help them understand. Some will, some won't. Once you get over that too,the sooner you will adapt.
Welcome Hairball! You make me miss my days on the farm! I group on a big dairy farm with anything from chickens to cows to goats with attitudes! I so miss living in the middle of nowhere and not hearing the freeway a mile from my door! Right now I got a apartment on a hill above good ol' I-5 here near Seattle and I would give anything to be back in the country even if it meant the trips to teh doc would take a little longer to get there! Hope you find a great doc that will help treat you! And it will be worth your time to find a good knowledgeable one!
Welcome Gen! I was only diagnosed last fall and I found this place is a great way to learn things and to lean on! Things may not get better but at least if you know more its easier to face whatever comes next!
-Becky
Hi Gen, I know that it seems impossible now but if you hang in and read some of hte other post on this site you will find the help that you need.
Hi Hairball and gen and welcome to Sjogrens World!
Going to a pain clinic is something that many of us have done here...but its usually not the first thing that we do....are you on any meds like plaquenil or anti inflammatories? Did they order x-rays or physical therapy/occupational therapy/warm water therapy for your joints? I think all of these things are usually tried first.
How far are you from a bigger city Hairball.....going to get a good physical work up is a great idea if you can pull it off!
Good luck and keep us posted on how you are doing! In the meantime...you never have to feel isolated because you have found us here on these boards...you have many friends here now that you can chat with and get information from or vent to whenever you need it and at any time of the day or night. So your really not far from others at all! :)
Hi Gen,
Let me also welcome you to the SJS World and family. Like the others have mentioned, please do look around the board as there are tons of topics, and so much information that I don't have to ask the rheumy many questions anymore. If you don't find what you're looking for, don't be bashful as there is usually someone about that might be able to help.
Take care now, and I sure hope that you feel better soon!
Patze
Thanks all for the greetings. To answer some questions..I live in northern Michigan...I use to love it here but the winters are quite tough for someone who is ill..I think Flint Mi would be the largest city to me..I think about 5 hours from here..Going to the city isn't bad at all....when you mention "road trip" to a hillbilly the suv will fill instantly with 9 family members all with a mission...Ladies want to go to a mall..the guys say there going to a sporting goods store and end up in a strip club. I have been surfing for a medical university in the area, and going to make contact with MSU.Just tried the VA and didn't qualify.I don't take any meds because of $$$. I am on medicare and one of those americans "stuck in the middle" spending my retirement savings on medical issues. Yep, that piggy bank is getting lite. But today was great! I was "vertical" for most of the day. Girlfriend visited, fixed pheasant for supper and spent a little time working on my boat..one of my passions. Life is grand..
Hairball
Good to meet you, really enjoyed reading your posts, and glad you are having a good day.
Hope you enjoy the site, and get a lot of info and support.
Wen x