Chronic Pain

great minds, mark ...

Betty, whay a day!

As far as health care in the UK, the National Health System (NHS) provides 6 months of free health care for tourists (we get a 6 month automatic tourist visa).

After that, an employer can enroll you on a health plan or you can stay on NHS, which is paid for in both cases through income taxes. My friends across the pond say that there is no real difference between NHS and employer-sponsored health care EXCEPT that you'll be seen sooner in some rare cases if you have the private employer-sponsored health insurance.

My UK friends also informed me that whether one sees an NHS doctor or a "private" doctor, is not an issue, since they are all the same doctors anyway (just billing in different ways).

The NHS also provides house calls for lots of illnesses. What a country or what?

Mark

Good Evening all
I believe we got up to a wopping 28 degrees today. I've kept the fire going pretty hot for the babies are cold too. I've been bringing the kitty in and put him in the little doggie kennel to sleep, my son & I are very allergic, so he cannot get on the funiture and bed, etc. He likes the kennel, when I opened the door for him he ran in and went directly in the kennel by himself and I just had to close the door. He's pretty happy about the situation, dogs cannot pester & wrestle with him and he can sleep out here by the stove.

I'm sorry your weather is so crappy stacy, gosh, I'm sure it's cold in the wonderful city. Gotta love the city by the gate! except of course, when it's windy, wet & cold. LOL
Hope everything going great for you, been thinking bout ya. Thanks for stopping by to visit.

The last I heard from Chuck today, the white stuff was falling and we all know what that does for the pain. We're supposed to get the white stuff tomorrow and the next day too. So I'm heading to town in the morning, like noon. Giggle and see my elderly friend, make sure her bills are paid, then I'll get back home before the storm begins.

I'll try to check in, in the morning and say hello, but will be gone during the afternoon.
Adrian, You can post and talk about whatever you want through out the night. won't hurt a thing. I know it gets a bit boring when you cannot sleep. Gosh I hate insomnia.

Mark; Hope all is well for you this evening.

Everybody take care and I'll see you all later

Betty

Sorry, did not realize we had rolled over to a new page.

Wow Mark, that really sounds great. I've heard all kinds of different opinions about national health care, I'd really like to hear more about your experience when you get there and find out.

Have your friends shared whether there is so much difficulty with getting their meds as we have here???

They also have meds that we don't get yet don't they?? I'd be interested in that too.

HOuse calls, WOW! that would be nice.

It will really be an exciting new experience. I'm trying to put myself in your shoes and think about what it would be like to sell everything, pack up and just move?
Although I have some butterfly feelings of excited nervousness, it also feels like you could really leave an old life behind and star off with a clean slate. New life. The only thing people would know about you, it what you chose to share and you could make all new friends and it really sounds kind of like a romantic, peaceful new beginning. I don't know, but I think it would really feel great. I have some very traumatic experiences in my life and I know you've really had some too, far more than I. So I feel for myself, I could actually walk away from those and have a sense of a fresh start and new beginning. I think it would feel really great. It would be interesting and really exciting to learn about new cultures & such too.
Your interest in history could really sprout and you would have access to truely histoical sites and sceens. building that are 800 or more years old. Just really cool and amazing art musiums, etc. You've probably seem a great deal of American historical stuff from living in the area that you do and then to add all the european historical sites to your resume of history knowledge would just be facinating.

I'm excited for you. It's something exciting to look forward to and I really do hope that it all works perfectly for you.

Take Care
Betty

Hi Betty, my UK friends have no problems getting their meds ... I'm not sure about which meds are available there but not here yet ... as far as I know, Adrian knows about research/treatments for illnesses that are available in the UK but not in the USA ... please excuse me Adrian if this is not what you had aid in a shared post.

I really like the way the Norwegian site is set up ... who ever wakes up first each day gets the option of staring a daily thread ... sort of like being the spokesperson of the day pr being the spokesperson at an Al Anon meeting.

Back to my attempt to sleep,

Mark

quote:

Originally posted by Mark:
Hi Betty, my UK friends have no problems getting their meds ... I'm not sure about which meds are available there but not here yet ... as far as I know, Adrian knows about research/treatments for illnesses that are available in the UK but not in the USA ... please excuse me Adrian if this is not what you had aid in a shared post.

I really like the way the Norwegian site is set up ... who ever wakes up first each day gets the option of staring a daily thread ... sort of like being the spokesperson of the day pr being the spokesperson at an Al Anon meeting.

Back to my attempt to sleep,

Mark

Yes, I did say that I knew the ease of getting our chronic pain recognized and that they have meds available that we do not .. if you do a little more research you will find that most new or approved meds are from the UK, Sweden & France ..

I wouldn't really trust anything out of China, but they also do stem cell research .. alhough I do have a nephew there, I wouldn't trust anything but thier video games ... lol

Good morning pain Friend

It's a bright & sunny one again, but still pretty cold. The news dude said that we are to expect snow late this afternoon & evening, clear through Sunday.

I'm waiting for morning meds to take effect, then I'll try to get dressed and head to town to visit my lady friend this afternoon. It's only 10am here, so I hope the meds will work quickly. I don't normally go to town until afternoon. I'm just an incrdibly slow am person, I was not this bad when I was well though, now it's just misery in the AM. LOL Oh, Well!

I like the page set up at your friend network too, they really have the funnest emoticons there, the people seem very kind. I'v just not been able to post anything yet, I've been busy working on some other things.
I'm glad to hear the pain patients in the UK are treated better than we are, If I understood that correctly. I just read a reasponse from a pain specialist in the UK last night, he was responding to the NYTimes questionable article about Fibro.

Adrian I did a sharepost out on the other side and put a link to some great response over the article in the times if your interested. It felt good to read all the positive reaction for the good of FM sufferers from medical professionals & leaders in the FM world.

Chuck; I hope your feeling better today, I'm thinking not so much, since you've not been here. Gosh, this has been a rough winter. Take Care and stay warm.

Well guys, I'm going to try to get something done here and get my chore in town taken care of. My lady friend wants me to bring my laptop and send a couple emails to her friends in Australia & Mexico. She's so funny and fascinated about this computer thing. She keeps asking me how much it will cost to send her emails. LOL. She's so cute. She's going to dictate to me and I'll type. I'm sure her friends will be shocked to hear from her in this route.

Have a great day everyone. Take Care of your selves. It may be burrr cold outside, but let the sunshine in your hearts.
Betty

Betty - i have been meaning to ask , what time zone you are in .. i am im MT time, but am noticing they have different ones .. we will have to maybe get that issue talked about with the others cause i just keep missing y'all and just thought that if i knew the time differences , it woul dbe easier to post an immediate resonse .. lol .. don't mind me, i am in the effect of meds and amd going to have my midday snack and rest ..

i am running errands later, if i feel like it .. lol .. that is one thing about my situation, is i get to decide when and what i choose to do .. lol .. peace

Adrian

I'm on Pacific Standard time or West Coast time, I think both the guys are on East Coast time, maybe Chuck is on central, but I don't think so. So that means, both guys are 3 hours ahead of me, you must be a couple hours, but I"m not sure??Did you say New Mexico?
When Chuch & Mark post in the morning like 6 or 7, it's only about 3am or 4 here, so considering I'm not a early riser, then my morning posts, normally are in the afternoon for most all of you. On a bad insomnia night, I've caught the guys first morning post, before I've even went to bed. That normally means I better get to bed or I'm gonna miss the whole day with them. LOL
Well, I'll talk to you later, gotta get into the tub, meds are finally giveing a bit of relief, so I can get dressed and start moving.

Talk to you later today
Betty

Hola muchachos y senoritas !

It is 5:15 pm and I am makin' leftovers .. an open face sandwich of wheat bread/sliced beef and my special brown gravy .. mmmmm .. I am thinking of taking a chance and go out to listen to a great rock/blues band downtown ..

I don't mind downtown as it is just about7 miles away and I travel the backstreets so I am not in all the traffic ...

I pm'd Mark and gave him some info where he maybe able to get answers to he different/approved drugs in the UK .. the place is actually researchers from here and the UK that have done wonderful work on ALS and Chronic Fatigue Syndrome ...

Can you believe it ? I am a vested member there and you have to see how catty these women are when you make actually great suggestions , which is absolutely encouraged .. plus if there is a disagreement , they, the administrators, don't interfere , they want the dynamic , but they do have a forum decorum (that is what I call it) , I posted the decorum as a thread and it got some of the guilty parties to do one of 3 things ;1 = apologize for shouting down (using all caps is considered shouting, in most cases); 2 = go away (lol) ; 3 = realize that they were not following the guidelines set up by the administers ..

As people post, there is a large clique that tends to shut you down by posting things that have nothing to do with MS .. which is a research site so we are encouraged to have discussions and offer medical advice (if we know) , experiences with medicine that we use or used ...

Well some of these folks (ladies) post jokes and nonsense to ppush the advice away to the back pages .. it is weird .. one administrator actually spoke up , after I had asked that they monitor the chats because ; 1 - we are losing the elder posters who have valuable info for the newbies; losing newbies who thought they were getting into a research not chit chat forum .. while it is encouraged to also post funny or odd situations that we have experienced , this same group will ignore any not posted by oe of their group and started a forum or thread just for themselves ..

Well, Betty, you know I just am not into cat fighting, but offering advice with a bit of humor .. and when we share here, we acknowledge the persons post and welcome them with open arms ...

The administer was adament hat the staff will look at the situation, which they hate to do, and have found that there were clicks and that exclusion or ignoring any other member will not be tolerated ...

Bravo ! So hopefully we can get back to aiding panicked newbies, and acknowledge ALL (not yelling) members who post advice or questions .. as it was meant to be ...

That is why I am here most of the time, this group we have is like a family, when one suffers we all suffer , when one is happy and sharing , we are all happy and sharing .. and it is comforting here and I hope this site never disappears .. as that one eventually end due to the fact it is a reserach or information gathering place sponsered by members and researchers ...

The reason I am telling this story is because I have found that most of the forums for MS , Chronic Pain or whatever the problem you are having are separated here, but we are encourage to speak to all .. whereas that is just an MS site so how many times do we have to see "MissLilly's Late Nite Chat Forum" seeping into what should be a discussion and not a comedy show .. and if you say anything the "group" doesn't like, well you get slapped down asap ...

So now I go there to do my MSRS Charts .. and speak only to those who pm me to find out what is up and am asked to post on a particular subject .. I am hesitant to do so, but some good people there and I have subltly try to get the good ones here to be able to chat with us , they are sweet , kind and fun .. and leave the goofballs or jekyll&hydes as I call them , there alone to scratch each others eyes out .. lol

As far as the time difference now i understand you are behind me in time .. that's cool .. and the guys are eastern time and that is cool .. I am in the middle !

pardon if this was long but i am hungry and just thought of my humble beginnigs here and how much warmth I felt when you, Betty, asked me to become a part of this forum .. it has been , as Mark would say, a safe haven .. and I certainly don't like being shouted down or ignored , who does ?

I may be back so watch what you say ? lol

I'm baack .. I wrote the above before I ate , now that I have eaten I can tell you of my adventures ...

Monday I go see the neuro , as I stated on the old grind , he acted indfferent and refused to even look at my films and/or reports from previous doctors .. three mths. earlier he was gung-ho on getting a hold of my records to go over them , to include the last MRI and radiologists report ..

Come to find he was not an MS specialist, he just treats MS patients, as was the one feamle neuro who ordered my MRI's shortly after my relapse in July of "05 ..

So, weds. I saw my PCP and was to have my physical, well I cancelled it upon arrival and just sat and chatted for an hour.

I explained the situation with the two neuro's and the rhuemotologist that she and my np suggested .. I explained that on the MS Site , here at health central, a fellow MSer gave me questions to ask the doc's .. when I asked the neuro after he dismissed me as have reaching my plateau , he was shocked and had no choice but respond that "no, he is not a certified specialist, and he only "treats" a handful of MS patients via injections , flare-ups ...

The same with numero uno neuro .. and the rheumo , who claimed to be a fibro expert .. none ever gave her as requested any reports ..

That got her hair up, the facts I told her got her hair up and the fact that they wanted to charge me for the reports got her hair up. She also realized that the one and only report she received was from the eye evoke test (special test for optical nueritis) .. and that got her steaming .. why? The reports were never read by the adminstrator of the tests or a radiologist.

That is important as that is thier job, they read the MRI's and render a report explaining the tested areas and what they found .. so in other words we don't really know to what extent the areas were truly damaged, and usually all three consult for treatment.

I suffered for just about a year , and am now stable and am also very grateful that I have a mild form of Relapsing/Remitting Ms ...

Now my PCP is having a full MRI from brain to cervicalto thoracic to lumbar done .. what the neuro called or rather said what apperas to be arthritis in my cervical spine could very well be new lesions .. she is also calling the MS Center , where I am going to be going in Al-B-Que .. as she knows the team there and will explain and discuss my situation with them prior to my appointment.

Have I told you this before ? it may be that I wrote this on another forum .. I feel so much better knowing someone is being proactive in reference to my pain ...

So when I did post my story on the other forum for research the dr.s had questioned the reasoning behind all this and were amazed that as specialists they wouldn't look at any of my records or films .. and no meds were recommended , I mean they were shocked that the last neuro said take your symptom charts to your PCP and have her deal with them ..

I found that some of the other members actually had no interest whatsoever in my post , and it puzzled me .. so I reposted it and asked why only a handful would find it interesting and offer comfort , when this is a serious situation and when they post minor stuff, the "group" sends prayers and hugs and advice ?

That is what stirred the catfight as alot of other members there agreed that there is a click and that they don't usually dare post any they may feel these fellow Mser's would just ignore them the same way ..

But I had enough, and I said so .. and when others started giving me the thumbs up and saying thank ou for speaking out as they admitted they were afraid , that is when I posted the forum decorum, and like Mark or Chuck .. when you are suffering we are here for you , well, not like that there ..

I felt like I was at the Docs' , just being dismissed and having no interest in helping to find some relief from my pain.

At least here I can breathe , and am not afraid to speak .. and no one mock's me or ignores me .. and I want to apologize if I come off as bitter, but we all have our moments .. so I will make the trek to Al-B-Que , and hopefully get some relief .. thanks to you all for letting me verbalize what I feel ..

Friday Nite Greetings all,
It has been so cold here in the hills the last couple days!
It was 11 degrees this morning when we drove my daughter to work,
there wasn't any black ice on the roads thank goodness.
Had to make a trip to my favorite place this am but, it went
quik and painless(well almost). Our wally world is fairly deserted
at 9 am.
Adrian, I thought I had a rough go with medicos but, it was
nothing compared to yours. I'm glad you're getting some action
in the right direction. I still get a message digest from another chronic pain board but, I haven't posted there in some
time. They were always friendly but, it was a little regimented
-moderated for me I guess.
I'm hoping I'm on an up swing for a little while at least, I'd had flares before but, never as long. If I happen to miss a meal or snack (like yesterday) and don't pick up on right away I'm down for a while.I mistook the nausea and dizziness from midday meds for forgetting to eat(I manage my type 2 with diet and pills). I didn't pick up on it till my wife asked why I was talking funny, got some OJ and a snack but, it still takes a few minutes to come all the way back. It leaves ya feelin pretty rough for a while and whatever it does to the pain cranks it up too. It doesn't happen often but, every once in a while I miss it.
Betty, how was your trip to town? Did your friend enjoy emailing her friends??
Mark, did you say had appointments coming up? Or did you have them already??
Chuck

Arian

I want to really thank you for sharing more of your situation with us. I know how tough it is to have FM/Chronci spinal pain, but I just don't have any idea how dreadfully tough it would be to have MS, and deal with the fear of it getting worse over time, the uncertainty of when or where it will come out of remission or what part of your body they will find more lesions and how it will effect your over all well being. You really have a tough situation, and your an amazing lady. I'm sure you have to deal with the added stress of things, that I just dont know what it would be like to always have it in the back of your mind & all of the "What If's".

You live on your own and take care of all your own needs, I sit here and although I try to do what I can. When my husband is home, I have to admit. He takes care of me, the dogs, the house, the wood for the stove is always on the patio, I never really have to think much about anything. He pays the bills and literally takes care of everything.
Your a very brave woman and your an inspiration for me.

When I first really broke down with the chronic spinal pain, other than routine yearly and the occaisional back issues that would come & go, but when my back flared up, I normally went to the chiropractor and rarely ever went to an md for my spinal issues, didn't want to get on any pain meds! But I really did not know how to navigate the medical system, referrals, what all my insurance paid for and who or where I could go. So I really felt like I was lost and trying to navigate my own health care, I'm sure you've already had to learn all of this. The one part about specialist that I've pretty much found useless, was like the spinal specialist that I've seen on a few occaisions for spine assesments. She still says I'm going to heal, but I guess she forgot to mention in which century she thought this healing would occure?

I have found the rotation through specialist to be really pretty much, not worth the gas & time it takes to get there. The only doctors that actually seem to care about me are my primary care & in sencond place it the pain doc. She's a little dry, but she actually has made a great deal of improvement in my pain by her medication instructions and her RF Oblation procedures and injections.

I don't really understand why the specialist seem to me to be jerking you around. That's just not right and if you need to vent about it, We're here to listen. I don't always have some grand suggestions, but sometimes it helps to hash over some of these frustrations and then once I'm done venting, I may have a clearer mind to find a possible solution.

If I go for an MRI, CT scan or an Xray, I get a typed up report from the radiology specialist who reads my films in the mail. they send one to me and one to my doctor.

After my first CT Scan, I had called my PC in the few days as suggested by the technition and the nurse had called me back and told me my films were clean and they did not show anything. Well of course I was distressed, I was in severe pain, could barely walk into the bathroom on my own and could not even bend enough to get dressed or anything. So a few days later, I get the report in the mail and low & behold. The report had me listed with fratures, bulging discs and all kinds of horrible stuff????? I did call my doctors office and really let them know how frustrated I was and got right in to talk with my doctor. So I'm really glad that my medical provider sends a copy of the reports to me too. GRRRRRR!

I was searching through my bookmarked pain & pain illnesses links and ran into this page again and just thought maybe it may help you. Long story short, there was a time that we were a bit concerned that I my have MS or something like that. This site was recomended by the American Pain Foundation and thought you may want the link? http://www.mscenter.org/index.php/

It's now gotten late, so your probably in bed. thank you for sharing about your other sites you participate in. I participate in some other ones too and I think they guys do too. It's always nice to come here or home though. No place like home!

I'll see you in the morning dear heart. thanks alot for sharing with us.
Sleep well and get great rest. Hows that little guy, all back to normal I hope.
Good night
Betty

Boy am I happy to see you back Chuck, I was beginning to get more worried. Boy I bet the diabetes really complicates every thing you have to do. You scare me, your wife noticed by your verbalizing with her. OOOOOh my.
It would be a real challenge for me to watch my diet and have to eat on more of a schedule like you. I'm not a big eater and I don't like to eat much through out the day, so I would really have to make huge changes.
Your temps are colder than ours our. I'm listening to the weather right now, we are expecting freezing rain tomorrow morning, turning to snow later in the after noon with lots of snow, several inches above 500 feet, but some down to the valley floor. We live at about 1400 feet, so we are supposed to get dumped on and it's cold out, still in the high 20's, so we may have a real storm going to hit tomorrow.
I went to Helens today, brought my puter, but by the time I got her all cleaned up and all her needs taken care of, paid her bills, etc. Her brother stopped to visit and then it was time for me to come home, so we did not get to do her emails, so I'll have to give it a try next week. lol, it's always that way with her. That's ok, it's not that hard to pach this little machine up and put in my case, so no big deal. She was onto politics today, so we had a couple of serious discussion. Politics is irritating for me.
I hope your getting to feel better and you'll be able to visit in the morning. Take Care of yourself, rest and we will be here when ever you feel up to it.

Sleep well
Betty

Good Morning Fellow Painiacs,
I thought that since I've had to get up early all
week that I would sleep in this morning so I didn't
set my alarm, at 645 my back decided that it was time to get up and get morning meds and once I'm up and awake well you know....Here I am.
That's ok it's good to be amongst friends.
Betty, thanks for your kind words. My trip on this
pain journey started similar to yours. Went to the
doc with back pain got an xray he said it was mild osteo well, it didn't let up had a ct and finally an mri and the osteo was definetly there bet with a lot of other stuff.
But, I got the reports and they went to the doc with no problem. I had a little trouble getting my results from the sleep study but, nothing compared to Adrian's run around.
I feel about politics the same way, I won't even discuss it most of the time it just gets
under my skin.
Our weather is usually really mild, I guess we're due.
Like you the so called specialist didn't really do a lot, took
3 mos to get in to see him for 150 bucks, he did write some scrips for
me but, it's been my md ever since.
Adrian, how are you this am??
chuck