Irritating , annoying comments about chronic pain .

Ah it's not uncommon unfortunately but now you know you can start looking forward with a good treatment plan and support from rheumy + everyone on here for morral support, good luck I wish you well 😊 Let us know how you get on

I so agree...my GPS is prejudicial....take me to incorrect addresses and then just spins and spins .....

yes many miss the AS diagnosis. I'm glad it's finally sorted out and sorry you had so many docs blaming your weight for your back issues. 😡So narrow minded. They can't read a X-ray?

glad your off to a rhumy they know just how to help. Always exercise to keep from getting stiff. 😜Water exercise resistance is great.ask for physio therapy !

I was hit by a drunk driver at a stop sign on a motor cycle. Really messed up my back too! The things that happen to us as we go thru life. 

Peace & Heeling.

Hopexxxx

Sorry I guess I wasn't aloud to say that anyway change your doc if you can

hello Carolineq8,

so so glad you joined us here on our every day check in thread for chronic pain.

thanks for you great advice for AK TREATMENT. So true.

how are you? Do you have AK or chronic pain? We are here for you too!

hope you are doing well today! Keep posting.

Hopexxxx

Thank you hope, Ye it's complicated, 13 years ago spinal fusion, followed by thoracic arachnoid cyst compressing spinal cord, cervical degeneration, chronic back and neck pain which progressed to joint pain which lead me to rheumy so awaiting results and an MRI but was told yesterday the AS is a possibility but even with a diagnosis it will take time to get any pain relief, rheumy was brill probably one of the first docs that didn't think it was in my head, it's been a long road but this forum has been brill, iv had so much support and as your k ow there are some really dark days and I don't want to burden my family any more than they allready are so this has been a life line for me, iv laughed and cried at some of the post on here but hope to just be there for someone else line a lot have been for me, thank you I hope you are well ??

Ye I know, I have a great GP and really feel for those that don't so just get carried away 🙊

It's sad to read others experiences just to find a diagnosis. 

Thanks caroline.

Ye it is but we all feel isolated when it comes to chronic pain and only know what where told until we discover forums like this where everyone shares there experiences, it's only then that you realise your not on your own and it's OK to ask for a second opinion or be refered somewhere else, it's sad to see so many people suffering 💖

I have had help with my depression and isolation. I have seen a chronic pain shrink. Very helpful . I am able to visualize the pain and see it for what it is and accept that I am OK despite the changes in my life. Also anti depressants have helped me tremendously. Depression makes us with chronic pain feel worse. Especially when out in public we can be ostrisized for asking for help. 

Some time if I ever have the nerve I would like to write a really scolding letter to the overly anxious unexperienced surgeon that caused my pain issues knowing what he did was wrong! I have written it and released it by candle balloon with a group of chronic pain patients. It was such a freedom feeling to finally let it go!

Iv been told so many times that I have t accept it to move on and that's what I find the hardest, I do try but feel sometimes I go backwards and like you feel so angry with my surgeon who changed my "normal" life to this hell and wish I could let him know what he done hoping it would prevent 1person from having to go through this, i like the idea of the candle balloon and might give it ago, I know I have a lot of anger and it's because I k ow my life would have been so different and feel robbed of my goals and plans but hopefully if I start getting the right meds now I might get some peace, iv been in so much pain for so long I dont remember the last time I had an ok day.

You seem like you've got a handle on things and that's great but I understand the challenges you've faced to get where you are, you need a medal as this is not an easy road to take, I might also mention anti drepression tablets as I do feel I'm suffering with it but then constant pain would make anyone feel depressed xx

Exactly Caroline you have hit the nail on the head. Our lives were changed in a instant and no one has held the surgeons we had accountable. That's what really gets me. Yet we know that anger is only a destructive emotion and can do more harm than anything. 

I have had 5 long years of disabling pain with no pain meds to rediscover and reinvent what I needed to do thank goodness for pain shrinks. 

I still have a lot of work to do. You are right we have been robbed of our former lives and grieving our past lives is part of the heeling process. 

Ask to see a special grief & pain therapist. They can help give you the tools to accept, doesn't mean forgive,but to move past the anger. It's all part of the heeling process. I hope you do this you will find a better place REALLY. 

IT takes time and commitment but it's worth it. You're whole family will benefit from you feeling better too! Do the candle balloon or helium and write the letter get your feelings out and it will give you peace! You deserve peace!😊

Hopexxxx

 

Thank you again, i learn so much from people like you but the fact people take the time to reply in the first place makes such a hugh difference, it means so much 💝

Your so right this forum is full of great 👍 helpful positive comments.

so many in fact you cash take your pic. 

Hope 😀

😊

Hi, it's late morning in CT and I'm still in bed. You all know why. I just caught up with all your comments. Wow. It's amazing to hear from all of you!

I've had years of what I call snowballing: pain and depression building more and more. I had a 5 year period with the best days only allowing me a few hours out of bed. The depression was crippling. I gained a lot of weight as I used sugar and caffeine for entertainment. I hope no one ever goes there.

It took a lot of meds and support to come out of it.

Some antidepressants can really help knock out the screaming highs of pain. A few months ago I attempted to go off Effexor (works like Cymbalta). When the pain kicked up I was almost begging to stay on it.

The pain can dictate life. I want a miracle. I've been looking at DMARDS and bios as options i haven't tried. I'm also doing a round of chronic pain CBT. I have an appointment with new rheummy on Friday. If this doesn't work, I'm going to explore Boston rheummies for someone who knows AS.

Sorry I don't have a cute, happy comment to help you smile. Maybe tomorrow!

Great to hear from you and no need for cute happy comments 😊sometimes we just don't have the energy, we all understand the daily struggles chronic pain brings, I hope your feeling better soon ??

Good to hear your seeing a new rhumey. I took DEMARDS AND. cymbalta They both helped for awhile. Due to side effects had to quit.now I take a bio med.

Everyones pain is different and I hope you find what works for you. Don't give up. Hang in there. 

Hopexxx

 

Hi Carolineq8,

thank your for for you encouraging support.,we just need to say what's on our mind sometimes the pain and depression weighs heavily on us all.

Just curious what does the q8 stand for? 

hopexxxx

Ah I had to make up a password and my nickname is quazzie and my lucky no 8 😂 So nothing to exiting haha

quazzie??? Interesting where in the world 🌎 did you get that nickname?

i get the lucky # mabe you'll win the lotto! Xxxxx

How you doing today. I'm getting a bit anxious 😩 having revision on my hip. I go in today to find out if they can use a chiseleand hammer to get the femur implant out or if they have to cut the bone? YIKES a bit Scary!🙀

Blessings sent ur way.💝🙏🏽

Ah really, it's hard I know but try not to get to worked up, I feel for you, will you be home tonight or are they keeping you in?

I'm in a lot of pain with lower and upper back and just been given venlafaxine, app there used for depression but some neuro docs use them, I wanted a stronger anti inflamitory but he said to give these a go first so hey ho another trial.

Haha my nickname was given years ago by a friend, I think it's quite funny and just stuck with me since

Let me know how you get on I will be thinking of you, sending hugs 💞

I am pooped today. Went to the grocery store. Big storm coming tomorrow. Had to much to get so used a shopping cart instead of elec cart. I carried my cane . I can't tell you how many darn times I dropped the darn cane my hands have bad arthritis and grip is slipping. I was so pleased when many people came up to bend down to hand me my blinged out cane. Maybe because it was all deco in red & green . I can't bend down. Bummer! But after THR I will in 6-8 months. The grocery store was full and many people helped gladly with a smile. 😀

So Quazzie guess what else happened at the store? I had help with the clerk offering to put my groceries on the check out counter and they were put in my cart and taken to my car and loaded up. I suppose you could say it was the Christmas 🎄 spirit all the decorations all around everyone seemed very jolly. No snears 😠or your in my way people 😑actually waited for me to pass The store was so crowded . It was the best shopping experience ever. 👏

I hope you are up and moving a bit today.,I wear a back brace takes a lot of pressure off. Otherwise standing longer than a few minutes is to painful.

keep posting let's hear that you will be better soon. Treatments is on the way! We all can be fixed in some way,not always the best but I hope you can get some mobility back! Stay strong.

xxxxxx

Ah Hope that sounds amazing, I'm so glad it was enjoyable and not the daunting chore it normally is and I know that one well. I know it would have took it out of you so take it easy please and you do sound in good spirit which is always a good thing. I also went out to one store yesterday and it was only a small shop to pick up a parcel and the amount of people that walked in front of me, it was so annoying, if I had a cane i may have been tempted....

Loving what you've done with your cane 😀 if I ever get one I'm going to put flashing fairy lights on it 😂

What's happening with your hip?

Let me know how the storm goes,

It's a bit of a dark miserable day here but not to cold.

Think iv got siatica starting now down my R leg, it often happens after the injections😡

You made me laugh calling me quazzie 😂😂

Hope your resting up now, take care and let me know how your getting in xxx

Hope can I just ask a question about AS even tho I haven't had a diagnosis I seem to have this awful pain in the base of my back and sacrialic joints that's travelling down my legs (not siatica) constantly and it's stopping me from being able to stand up or walk it's so unbearable, I had my injections on Friday and they have helped further up my lumbar spine but not this area, it feels like it's burning and inflamed but also that my back is going to come away when I walk (it's not but that's how it feels) this started about 6 months ago but has progressively got worse to the point that it's to painful to walk or stand, could this be related to AS?

Hi Caroline...I think this is related pain from your lumbar spine and sacro-illiac area..I can understand your description of it burning...is it hot to touch ?...I often have this too...it feels like my coccyx will break.  Have you got an inner tube from a small car tyre or better still a rubber ring designed to alleviate the pain when sitting down..I'm gonna buy one in Australia. I do hope you get some relief from this....it's so bad. Don't try to sit in the same position for long....lean to one side if you can to take the pressure off a bit. Standing for more than 10 minutes or so also makes it worse. Just rest as much as you can and don't feel guilty about that....it's vital. Gentle hugs...G

Hooray for happy shopping. The supermarket I sometimes go to in the big town a few miles from here....is a nightmare. The staff leave boxes and trollies all over the aisle and I can't get through in my wheelchair. I have to do a five point turn and go back to find an aisle that's not full of stuff. This is a huge strain on my hands as I have arthritis in them also...difficult to manouvre myself around and my hands suffer the most. I have small haematomas in the joints of my fingers which the Doc doesn't like the look of...they are like blood blisters. Thank goodness I don't have to go very often...Maybe we all need suits of armour...eh...xxx

Thank you Gloria 😊I can't sit I'm only getting relief when I lie down and standing is just unbearable I end up crouched over where ever I am, I will give the ring a go tho so thank you, have a great time in Australia 😎

Thanks so much...I can almost feel your pain when standing....lean forward when the pain starts...it does help....but you must rest please....catcha soon. xxx

Hi,  Someone may have already mentioned this... Venlafaxine is generic for Effexor, the antidepressant I mentioned yesterday.  It is chemically similar to Cymbalta for pain, but is not in the "official" category for pain management.  I started it again last Jan-March.  It helps.  I tried to switch to another that is supposed to match my genetic testing results.  When they started stepping me down the pain went soaring.   For me, it is no where enough.  I also take Mobic, Norco, Tramadol and a new muscle relaxer for the little back spasms that come while I sleep.

I'm so happy to hear they helped!

I don't know if it's useful, but here goes...  I can't hang onto anything.  I've been dropping stuff as long as I remember.  Canes are more trouble than help.  Years ago I got forearm crutches like the kids on the Jerry Lewis Telethon for Multiple Dystrophy.  I've had them about 15 years.  I don't use them as much these days.  They are great getting through doors - I use them to prop open a storm door while I open the next door.  I have found it's easier to carry them down stairs and use the railing as I have tripped over them and taken some tumbles.

Iv been on it 2 days and it's made me ill, I'm wanting to be sick, I have the shakes and Bad body odour, I know it's early days but it's done nothing for the pain but the sickness is the worst, not going to take it tomorrow but thank you for your advice it's greatly appreciated 😊

I wish I could give you an instant fix.  When I go through periods of pain shooting down my legs I usually only have relief when walking or lying down.  Sitting and standing make it much worse.  A short walk or stretching is helpful if I can do it.  Some gentle yoga has given me new relief -- sleeping baby pose feels good.  

Leaning and bending forward helps me give some added space for the swelling between the vertebrae.  Unfortunately, we can fuse and should not bend forward.  When I'm in that much pain I don't care.  Since March I've had 2 nights of sleep without waking in pain.  For relief in bed I've been finding an extreme fetal position relieves the pressure in my lower spine (and relieves leg pain).  I'm keeping my mid-upper back straight bending my knees up.  My knees would touch my nose if I could get them that far!  I try...  I guess it gives me something to do at 3am! When I was a kid I remember seeing a lady on tv wrap her legs over and around her head.  Sometimes I feel like that.  I tell you, the lengths I'll go for a little reprieve!  And to think, some people think we should just "try" harder!  We are not lazy people!  I think combined we've tried everything!

Ah your story's so familiar, iv tried it all to and at the no standing and walking are becoming virtually impossible but 6 months back I was getting around only just but at least I was, I stopped my opioids I was on for 2 years (because they weren't working anymore or so I thought anyway) in September through to the end of October and since then the pain is unbearable and now I'm wandering if they where masking the pain and causing more damage, I can't go back on them as they made me ill and I was pretty out of it and even tho I knew it's not until now with a clear mind just how out of it I was, so it's pain and immobility or opioids and brain fog but I have to say I think if I'd stayed on opioids they would have finished me off sooner I really don't respond well to them.

I'm sending hugs your way and hope you find peace with your pain 💞

Hey Quazzie, I love the fairy light idea I may get some  I am sorry you had such a annoying experience with the rude people that pass u just to beat you to the line. Really bad form. 📸Take a pic so you can go to the front of the line . Our little office knows me and when any handicapped customer walks in they immediately take us to the front. Boy the faces on the other customers is priceless.🌀

i have severe back problems AK , degenerative arthritis, scoliosis, and two fused discs and sciatica. Need a disc replaced.

Hip issue oh ,where to start. I had a THR done in 2011 second one, the othe hipmdone 18 years ago, in good form still but needs a new cup.a few months later after the 2011 THR I complained to my surgeon that I am experiencing seve pain. Long story short it was recalled by manufacturer due to metal on metal pieces fretting metal ions into tissue and blood. Causing the neck in femur to corrode pseudo tumors lymph nodes filled with fluid. Poisoned by cobalt metal fretting into tissue.Any way it's like constant recovery from surgery after THR the pain equal to 4-5 weeks after surgery. Constant basis almost bed ridden at times.  I am on no pain meds and Tylenol only. Where I live in the NW strict law and contracts on opiates. Besides they make me itch and I also have shingles so itching is like having chicken pox x's ten. 

So I cannot bend stand long walk without support u know the drill.🚷going in for revision next jan. They break the femur bone to remove the original implant device so I will be in convalescence recovery 6-8 weeks. Over a year for total recovery. It's more risky and that was why the doc said waited so long. All that pain has to be justified on a MRI, YIKES,Better to let me suffer for 5 years than take the poison out? Wow I'm still in shock ??

Here we go again. Glad I got my shopping done yesterday.The schools and public buildings are closed last nite, ice storm and snow shuts down the NW DUE TO all the hills.Watching the cars going down the hills is like watching bumper cars banging parked cars slipping and sliding. The problem is they don't have enough sand trucks or snow plows to keep major highways and lots of slippery bridges are not safe or cleared. Wind chill is in the teens. Cars are clogging roads in ditches everywhere. According to the news, people were told last night to stay home. It doesn't matter if u have 4 wheel drive no one can drive on ice it's usually the other guy on the road that causes issues with the guy that has chains and 4 wheel. 

Its very icy so the airport is shut down too! We may loose power the usual tree fall on power lines.????????

Hoping your our having a better gay and continue to get well! Heeling blessings sent your way!??

Hopexxxx

 

Hi Kathleen, 😊thank you 🙌what a great idea . I can see how much easier they are I know what you mean. Such a simple way to get around without dropping issues.oo sorry about the stairs I will keep that in mind. I avoid stairs at all costs . In public areas thank goodness for elevators. We have the bowling 🎳 ally ranch style home no stairs.  I am going to look into those. I bet there on amazon. 

Thanks for sharing . Hope you are well today!😊💝

Stay out of trouble 🙀

Hopexxxx

Hi Hope,  The issues you're dealing with THR sounds horrific!  It seems inhumane the doc made you wait 5 years!  I can't imagine!  We also have strict laws, opiod contracts, etc...  some people abused the system and those of us in chronic pain get treated like drug addicts.  I wish we had more options.  

Medicare paid for my forearm crutches.  There have been several pair. I think they cover them every 7 years...  it keeps changing.  So far, I haven't seen any in fun colors and prints.  I go with the black...  so slimming!  

Keep warm.  I don't mind when the power goes out in the summer.  I have 1 old wood stove, it only heats 1-2 rooms.  I worry about pipes freezing...  On the bright side, when you're not well enough to work, we can choose which days we stay inside.  In tough winters I did my grocery shopping, etc. around the weather and feel privelaged to stay in on freezing mornings!

Hello Gloria,😁

sometimes shopping can be so annoying, frustrating and just exhausting. I have to drink a couple of espresso shots and take exceedrin like aspirin  with more caffeine just to make it through the store.by the time I get to the check out the checker saiys boy you look tired. WELL HELLO,, YEAP! Usually they are older than me and still Working! They are so helpful here in the US.

when you maybe enter the store with blocked isles Can ask some one before you start to plz clear isles. I don't know 🤔 how well thIngS ARE for handicapped are organized in Bali.

Ooo get one ?? of those 🐝 beep beep horns. I put one on my cane it look like a dog 🐶 rubber so no one knows it's me beeping. It's very soft sound just enough to make them stop so I,pass on thru.I admit to becoming a bit sneaky at times and I do have to ask people to move things or if I forget my reacher to reach things too low or too high! 

Do do the stores in Bali have electric shopping carts to sit in with a cart mounted in front ? Boy they see me coming in one of those 👉and they move and have better manners. beats a wheel chair and wear and tear on hands.

Now I like wearing a suit of armor maybe hold me up better like Robo Cop. 🤖👮

hands are are so important when we loose strength and have to use damaged hands just makes it worse. I sleep with a glove splint nightly helps my hands a lot. And wear glove when needed to protect my fingers and hands during the day. Light cotton white gloves get at the dollar store.What do you do to help relieve the pain in your hands and fingers ? That's a lot to process while shopping wrangling thru the isles to much just make it thru the day,🙀

Many heeling blessings sent your way, and still the count down on your trip to Australia is getting closer. Have you got all the travel arrangements worked out. I'm glad your daughter is going with you! 

Have a good 😊 day!

Hopexxx

 

Omg you really are going g through it, I can't believe what youve had to endure yet your still so positive 💝

Wow the weather your Having sound brutal, I hope you dont end up isolated or without power, are you all stocked up and able to keep warm?

Here in the U.K. We don't do well with a little snow fall, I live in the north so it gets pretty cold but nothing like where you are, I hope your feeling better to and tomorrows a good day for you, take care 💖💝💖

I actually can't believe what you've gone through and to wait 5 years is unbelievable, I'm not sure how things work where you are. as for opioids iv tried a few and had to do cold

turkey twice, not nice and wouldn't recommend them anyway as you have to up the dose very quickly as your body becomes dependant, this is why I came off them as I was still in pain anyway or you up the dose and become a zombie,

I wish you all the good luck in the world with your recovery and will be thinking of you every step of the way 💞

Yes black is slimming that made me laugh and giggle.😀Too funny! The wrist canes seems like a great idea,and black it is. 

yes on the recalled THR issue the class action lawyer also felt the same way and wanted me to go to another state and have it done.this is a small community and most docs know everyone and the corporations that run the hospitals is the problem since most docs get paid less for recalls on revisions by the manufacturer .

Love wood burning stoves they are great when we need them. We have a old little one than can heat you out of the house even with controls. 

One winter 10 years ago, had to move a mattress by the wood stove and used plastic sheets and duct tape to section off doorways to the rest of the house to stay warm and reserve wood. We were without power for 17 days. Cooked on wood burning stove and outside barbe. It was a challenge. If we ever loose power like that again I'm heading to a hotel. If I can get out to one. It was so much work just eating and staying warm like camping out in a deep freeze in Antarctica! 

on the opiate laws before so many abused the system my doc gave me a open RX for pain meds because he trusted me and knew I took them when I really really needed them. He had a record of my refills. Now you have to have cancer or dying to get a contract for pain meds. Even pain clinics will not give pain meds to people with minor conditions such as what mine is refered to now. I was in a wheel chair waiting for THR because no pain meds allowed before surgery.Ok then you live with the pain confusion frustration and coping with a whole life style change. It seems that so many loose their lives every day to heroin and opiate overdose substance abuse in this country is out of control. I can understand why the rules have been stricter really.

Hope you are feeling well today and staying nice and toasty. 

Hopexxx😁

17 days without power!  We did that, I think it was Hurricane Irene, but I'm not sure.  We had hurricanes 2 years, back-to-back.  I can't imagine going that long in the winter.  I think we've gone 3 days or so with no power, high winds and temps 0-teens.  You're hard-core!

I just admitted to my gp that I don't know what I would do if the pain meds stopped working.  When my pain goes that high, my brain shuts down.  I can't always remember basic things like fluids, food, etc.  I just kinda drool!  The new rheummy is tomorrow at 10.  Hopefully he knows something about AS.  I've tried everything except DMARDS and bios.  I am ready for a new experiment!

Stay warm and cozy!

Yes I guess it seems like we were hard core and no power for 17 days but as each day went by we would think surely the power will be on the today. There were two states that had hundreds of thousands without power from the same storm and us country folks with lower population areas come last.it was tough feeding the horses and keeping fresh water for them with all the lines frozen had to carry buckets of water from the house to them., that was 10 years ago . Now I can barely lift a gallon of milk.It will get better once the hip is repaired. Something to look foreword to really help. Like a nice chocolate bar.chocolate makes everything better!😀😀😀😀😀

Hurricane Irene was really terrible.how you survive hurricanes takes more strength and endurance than I have. I have family in hurricane country and talking to them over the phone once while one going by sounded like a freight train running thru their living room.

Tthey were lucky a tree fell crashed thru the roof no one hurt.every hurricane season is different. There is always two sides the first wall hits then the silence as the core goes thru then the second wall hits. I never thought of it that way, but that was how they explained it to me.

i hope your doctor can help you manage your pain better..keep posting let me know how your doing!

better days of feeling well are ahead! 👊

I just left the new rheumatologist. He knows his stuff. He won't prescribe DMARDS or bios. My fears are realized. With my immune system (no spleen) they will potentially kill me. So, I have tried everything. Some things worked a few to 15 years, others didn't. It's a matter of hoping the opioids and only NSAID on market I am not allergic to don't turn on me. The Mobic is bad for my kidneys as I have chronic kidney disease. Neither one does a lot anymore.... I have to make some changes.

Kathleen,

thata hard to take, you are so brave in so many ways. I is not know the rest of your medical history. I am so sorry. 

i agree with ur rhumey. Some of the side effects from bio drugs are worse than the disease. The commercials shows paid actors laughing and climbing hilltops while the dialogue vocals the nasty side effects. Makes me cringe hearing all that . I tried a bio and it made me so sick for a year, also DEMARDS not for me either. I liked Cymbalta helped me so much but had to srop it drove my BP sky high! Mobic made me really ill and caused bladder retention I had a tube in my bladder. And I don't have the medical history you have, I do have a compromised immune system shingles, psoriatic arthritis , OA, AK and the list goes on. And some metal bling in a few joints.

i am very sorry to hear your dealing with chronic kidney disease. Are you on dialysis? That's a tough one. We had a scare with kidney failure  last year with mr Hope. My son is in the second stage of kidney disease. Very difficult for anyone to cope with. How do you do it? 

Your one tough lady and I am so glad I met you! It's people like you with the courage and strength that can help so many others just by being here. We all appreciate all your comments and generally very uplifting. 

I hope the change you decide to make can get you thru to a better place and feeling well. I don't know where you are with a higher power. If I may I would like to ask the Lord to help give you all that you need to sustain you tru this journey. 👼🏼

Many Heeling Blessings sent your way!🙏🏽

Thank you for your kind words.

I'm sorry to hear your family's been through the kidney scares. It is VERY scary! My

kidneys have been doing very well. I had kidney failure 10 years ago and before that 5-6 years of infections and many years of kidney pain. 20 years ago the nephrologist told me that if the kidney pain continued, he would insert a tube in my side so the urine would empty to a bag. (I was 31.). I never again complained about kidney pain to that doctor! And I spent months in an odd position in bed for gravity to help the fluids down. (I really felt it was qwackery, but I did it!). I've made many changes and the kids are holding very well. My GP guesses CKD was caused by years of NSAIDS. + autoimmune stuff... it really equals AS. Tho the cause really isn't important now. I can say my lifestyle changes helped turn things around tremendously. I used to have a wicked Diet Coke addiction!

When the rheummy told me there was no way he would prescribe medication, I told him I would much rather have 5 years of good pain free life than 20 years of suffering. He said he could not go to his grave knowing he caused my death. Also, he took the oath to do no harm, not to improve patient's quality of life. No doc ever said it like that before. But I think I've run into that many times. I'm seeing that from their point of view I should be grateful I'm alive. I'm coming to him basically begging for some added relief and a little more enjoying life. It's easy for me to think of my body like an old car: replace the radiator, rebuild the transmission, etc. if only it was that simple!

I would love to be that old rusty classic that's rescued from the junkyard, replace the failing parts with new ones, fine tune the engine, add some shiny chrome and a new paint job... and, voila! I'm a '69 Corvette!!!

My bloods came back normal but I'm vitamin d deficient, I was reading up on this and app 75% of Americans are and most don't know it, so just a thought guys but as we dont get this from food are we all taking high strength vitamin d, it helps with depression, muscle and bone weakness, so many cancers and so much more, just thought I'd put it out there and apologise if I'm the only o e not up to date with this, I thought I knew enough and that would be the last thing to show up but hey ho 😊

I'm glad you brought up Vitamin D. Very good info. For everyone in the US in a cool climate, vit D is an issue. And it is necessary for the body to absorb calcium. Tho I don't know anything about males and vit D/calcium, each woman over 40 should consider calcium (with vit D.) I think it's 100xs more important for women with AS to do everything they can to prevent osteoporosis.

I Imagine a lifetime of AS in my spine with the deterioration of osteoporosis!! Boy, that image suddenly has me feeling so much healthier!! I think I'll go dance a jig with the puppy in the backyard!!

I wish everyone a beautiful, pain free day!

Hi Caroline....many of us are vitamin D deficient....due to the fact that most of us don't get enough sunlight. We are imprisoned by our conditions...stay inside as there is not much of an alternative. I live in Bali where sunshine is abundant....but I rarely go out as it is such a chore and my pain increases even just walking a few steps.  Yesterday I sat out in the sun for ten minutes...and got eaten alive by mosquitoes....ho hum...

Ye I'm guessing that's why I am as this year iv hardly ventured out, it's been a rotten year, I live in the U.K. So as you can imagine it wouldn't make much difference anyway as it's always grey 😂, Sending well wishes your way xx

Hiya Hope...what I do to relieve pain in my hands...is submerge them in some hot water for a few minutes...a bit like a hot pack. I had to laugh when I read about the help you get in the US....Bali doesn't have that luxury. There are steep steps into nearly every shop....I guess due to the monsoonal rains...no-one wants to get flooded...But in our big supermarket the escalator is often not working...so that's frustrating..

There are rarely any ramps at hotels restaurants or shops...even the orthopedic clinic is on the 2nd floor...and no lift...ha..ha.. wow when will someone think about that. There are no shopping carts...only trolleys with wonky wheels...and no dollar stores...ha..ha..I'll just keep going the way I do I guess...maybe one day someone will notice how hard it is for those who are disabled.  Hugs....G

Hey Gloria ,

Sorry Bali is not equipped to help you get around and you have done a terrific job in figuring it all out for yourself.

You are a trooper that's for sure. I guess we are spoiled in the US with all the handicapped laws for many of us.

Amazon has a hand or foot spa very small and cheap. You purchase the wax to melt in the electric container for dipping hands. I get lavender oil fragrant wax, a little scent therapy too, the wax it's melted in the container called hand foot spa. After the wax has melted dip your hands in a few times until,coated well nice warm glove.  It feels like heaven. Then once the wax has cooled it comes off like a glove and its reusable to put back in the melted wax container spa. Its electric and melts a cube of wax takes a few hours to melt has a couple heat tempeture controls for heating . 

How's the packing going? Counting down the days for travel to sunny Australia! 🌞 What a beautiful peacful place you have chosen saw it all online.

Hope your feeling better today. You have a beautiful,??,

Remember no beauty shines brighter then that of a good heart! 

Hopexxxxx

 

Sorry bout the skeeters. The same thing happens to me and no one else around me is bitten. So I use a home made apple cider vinegar solution mixed with mint or oregano. They leave me alone . It works for me. I hope that Sika virus hasn't hit Bali. 

So now nursing all those nasty bites. YIKES! I use ammonia mixed with glycerin 60/40 mix. Then mix in blender Aloe Vera succulent then apply over bites. Lft dry it keeps the air off after it  dries and stops the itch. And there's many OTC AIDS too! I seem to be allergic the Rash and bites last for weeks.🐴👊

hopexxx

 

Thanks Hope...when I get back I will take a look at that device....bit broke right now....so much money to go to Australia...thank goodness my family are helping. Haven't packed yet just shuffling things around my bedroom....this is for my daughter, this is for my grandkids...you know the dilemma...so I might just shove it all in the suitcase and let my daughter help with who gets what....phew. Have wrapped her presents so she can't check em out....ha..ha.. They always snoop...just like when they were little...squeezing presents, sniffing them..shaking them .etc. I'm so tired...seem to be nocturnal nowadays...think I will ask my Doc to change the tablets...I take them at 7 p.m. buit they don't work until 6 a.m. in the morning...I lose all my days....feel like a possum.

So much to do now....had better get moving...albeit slowly....xxx to you.

 

Here in Bali we use Tiger Balm...it stops the itch almost instantly...will take some to OZ with me just in case...especially as we are staying next to a lake. Dettol mixed with coconut oil help to keep them away too...I must have missed a few places on my body...and they found them.it's the knuckles they like....and they itch like mad. If they bite during the day they are likely to be the Mozzie that can cause Dengue Fever...it's Dengue and Typhus time here..it can be.very serious if bitten by them..

We also grow Aloe Vera in the garden...so it comes in useful for skin problems. Even the good old onion is good to stop the itch...but you gotta be prepared to smell like a burger....

It so much fun to wrap our presents in anticipation of Christmas Day what response they will have when they open them. We always expect this will be the best present ever. Yet my little nephew one year I got hip a metal finder for beach combing he's always at the beach. He saw the box and said ,"Oh Boy I Got a Sears! Sears was the name on the box and a major felt store. He was only 3 and could read Sears. We all just lol and wished we owned a real Sears dept. store. 🏬

Children are the cutest. I have many memory pics of family at Xmas.

its a giant wrapping paper mountain after presents opened.Then hauling everything out to the frozen burn pile. I love the smiles the jokes and the interactions with all the kids and adults,smiles everywhere😀😀😀😀😀!

i too have joined you up all nite. I read that in the NW we have very little sun and many dark days our bodies produce more melatonin In the northern states too! We refer to that bright lighted ball in the sky as a UFO becuz the sun is rarely seen out in winter. Taking lots of vit-D. Responsible for so many systems in our bodies. 

I bet bet you make a cute Possum.👀

You sound so happy to be busy and packing for your trip. 

Warm sunny days ahead. 🌞🌞🌞🌞

Hopexxx

My home made mixes are still under moderation. I use Aloe too.

its scary that skitters carry so may viruses.,keep ur self hooped in what keeps them at bay. 

We we have Junta and Zieka virus. Finally there is a immunization many pharmacudical labs are working on for these. 

funny you mentioned tiger balm I use it a lot for sure joints and muscles and a technique called spooning .

i don't care what I smell like at tis point as long as I keep the buggers off me. 

In simmer I wear long sleeve long pants and cover skin with green lipped clam gel. Works every time. Haven't been bit in two years. I am allergic you may be too. The notes on your nuckles next time wear gloves . Apple cider vinegar mixed with glycerin works well on hands and psoriasis. Then again sometimes antihistimines can be my only solution especially when P pops up. Or shingles! 

??Sometimes chronic pain makes me feel like an Abandoned car on the highway with the license Plates pulled off. #Isolation #out to pasture.

Hopexxxx

 

Can I just add this....sometimes the X Rays are unreadable....instead of doing them again...they just say..."Nothing there ".....G with hugs

??Oh goodness that awful,

Get a radiologist or MRI.

YIKES,🙀

 

Speaking of Corvetts I have a 1978 baby blue Corvette Anniversary special 

with all origional parts. I wish I could say the same thing about myself. 

This car I loved so much and cannot get in or out of it for years...😖 It just sits in the garage with its own heater and cover. Much like me with my elec blanky.

We are having another ice storm and no one is going anywhere!

town and airports shut down. My 4 wheel car hasn't learned how to ski yet😊