Physical Disability & Self-Esteem: Life As It Is Now, Coming To Terms, Rising Above

[Dean Ga]

Thank you for letting me take a seat.

As to the Kyphosis, I have been lucky so far, I was diagnosed soon enough that no bone has been layed to the extent to start a forward stoop. (knock on wood) AS Does also attack and lay bone where the muscle and tendons attach to the bones. I do have extra bone layed in my hands, elbows, ribs at joints, elbows, hip at sciatic joint, and feet.

Arthritis is an auto immune disease that happens when the liver no longer expels the used white blood cells from the body, so the blood then takes them and begins to deposits them onto the joints throught the body. To stop this from happening you must suppress the immune system and prevent it from attacking itself. ( That is a very short explanation of how this happens.)

As to the Methatrexate that I take weekly, when I was first started on it I had the nausea and the fatigue that took about 3 month to adjust too. Once they found a dosage that suppressed my immune system that took all the bone swelling and pain away, I was a happy camper. This month has been very hard, it all started with the iritis, then went into my chest wall and chest rib joints. So every breath I take is like breathing with broked ribs. I just finished a steroid dose pack but am still having breathing problems. When I am stable I walk 6 days a week and go to the gym 3 day a week, I swim and tone with weights there. This is a must if I am to keep my joints mobile.

LET ME BE VERY CLEAR HERE, when you take any chemo drug there are other meds you will need to take, I also have to take folic acid every day to prevent ulcer sores in my gut and in my mouth , vitaminB6 it is very importent to have and maintain a vitamin B6 level of 35 .

[da Bonster]

Salutations to all, happy Sunday, chickens in pots everybody? Big ups to you Shy, the pot you sent me is just perfect for a crawfish boil like we do down here. I am glad the fall didn't do any serious harm, know how that goes, unfortunately.

Welcoming wave to all and hey there Dean, glad ta see ya, thanx for the edumecation. Much empathy and damn, you have an incredibly heart.

Here's my story of a sorts. This is from waaaaay back. Been home from the hosp. for a while. Gonna take my first bath in I don't know how long. Got my ex to help me into it, aaahhhh, felt so good. There's nothing like hot water for healing broken ribs, right. Ok, time to get out. My left leg is really swollen by now. Doc has said don't worry, it'll be ok, crush injuries frequently look like they are going south, and are really just healing from the inside out. Riiiiiiight. I call my ex to help me outta the tub. I don't wanna wait. I start to get out on my own. The most icky thing ever happens. My leg splits in a coupla places and starts to leak this dark smelly fluid. I am freaking the fuck out. It all works out, much later. but that night, I do the icky leg leaking dance. Shouting, hopping on right leg, going dammit, get the doc, my leg is rotting off, all the crazy stuff. Laughing in hind sight.

[Shyfemmekat]

Salutations to all, happy Sunday, chickens in pots everybody? Big ups to you Shy, the pot you sent me is just perfect for a crawfish boil like we do down here. I am glad the fall didn't do any serious harm, know how that goes, unfortunately.

Welcoming wave to all and hey there Dean, glad ta see ya, thanx for the edumecation. Much empathy and damn, you have an incredibly heart.

Here's my story of a sorts. This is from waaaaay back. Been home from the hosp. for a while. Gonna take my first bath in I don't know how long. Got my ex to help me into it, aaahhhh, felt so good. There's nothing like hot water for healing broken ribs, right. Ok, time to get out. My left leg is really swollen by now. Doc has said don't worry, it'll be ok, crush injuries frequently look like they are going south, and are really just healing from the inside out. Riiiiiiight. I call my ex to help me outta the tub. I don't wanna wait. I start to get out on my own. The most icky thing ever happens. My leg splits in a coupla places and starts to leak this dark smelly fluid. I am freaking the fuck out. It all works out, much later. but that night, I do the icky leg leaking dance. Shouting, hopping on right leg, going dammit, get the doc, my leg is rotting off, all the crazy stuff. Laughing in hind sight.

OMG, so what did they say about it?

[Shyfemmekat]

Thank you for letting me take a seat.

As to the Kyphosis, I have been lucky so far, I was diagnosed soon enough that no bone has been layed to the extent to start a forward stoop. (knock on wood) AS Does also attack and lay bone where the muscle and tendons attach to the bones. I do have extra bone layed in my hands, elbows, ribs at joints, elbows, hip at sciatic joint, and feet.

Arthritis is an auto immune disease that happens when the liver no longer expels the used white blood cells from the body, so the blood then takes them and begins to deposits them onto the joints throught the body. To stop this from happening you must suppress the immune system and prevent it from attacking itself. ( That is a very short explanation of how this happens.)

As to the Methatrexate that I take weekly, when I was first started on it I had the nausea and the fatigue that took about 3 month to adjust too. Once they found a dosage that suppressed my immune system that took all the bone swelling and pain away, I was a happy camper. This month has been very hard, it all started with the iritis, then went into my chest wall and chest rib joints. So every breath I take is like breathing with broked ribs. I just finished a steroid dose pack but am still having breathing problems. When I am stable I walk 6 days a week and go to the gym 3 day a week, I swim and tone with weights there. This is a must if I am to keep my joints mobile.

LET ME BE VERY CLEAR HERE, when you take any chemo drug there are other meds you will need to take, I also have to take folic acid every day to prevent ulcer sores in my gut and in my mouth , vitaminB6 it is very importent to have and maintain a vitamin B6 level of 35 .

Sounds like you have a good program in place. I know hellboi does chemo but I'm not sure what kind.

[femme-licious]

Happy Sunday All. Hey, look, I made it back in again! I am so hoping this is a good omen for the next year. One can hope. I am just going to read all the posts, and think. I so appreciate everyone sharing on here, it means a lot to me, thank you. And thank you for my welcome here. My illness and the lowered income have been very isolating at times. Blessings to all. With luck, back again soon. Coming in regularly, mutli-quote posts, wow... I feel like Supergirl! *waves*

[Dean Ga]

Da Bonster wow about your leg must have been scary. Hope that is taken care of now.?

I am a veteran so all my medical is through the VA. Yes I have a good system in place but it took me a long while for every to fall into place, and learn how to manipulate the system. The old saying, the squeeky wheel gets the greese !!! If hellboy needs help maybe I can do something for him.

I can go back several years and pull systems of AS, that presented and then subsided that was diagnosed as something different.
Will post more later, its 106 here and my feet are ice cycles, gonna go put socks on.

[hellboi]

Sounds like you have a good program in place. I know hellboi does chemo but I'm not sure what kind.

Currently I do an injectable chemo (subcutaneous, just like my insulin..but yuck! lol) It is till a form of methotrexate (it is made from it.) It also comes in a dial apen form of injection, so not really complicated or bothersome, but still makes me feel like a pin cushion. Of course this is because there are other factors raising my white cell count...but in October I am supposed to go back on the methotrexate pills.
so we'll see (I just don't trust doctors lol) It's the high dosage that is giving me so many side effects. I really had no problem when alls I took were the pills...well...not any serious problems worth complaining about.
spreading the dosage out to two days a week were supposed to help, but they didn't much. I'm gonna talk to the docs bout spreading it over three days and see if it gets any better.
Thing i hate the most....aside from the constant flu like symptoms...is this freakin purpa that occurs without warning and travels through my soft tissues over the course of several days. Man! That really hurts when yer internal organs all swell up! And I thought my legs were gonna split open, they swelled so badly. Not really lookin forward to another round of that. (keepin my fingers crossed it doesn't recur.)

[Shyfemmekat]

Good morning to my peoples! Slainte!

BTW, I would like to thank all our vets here for their service. I am very big on that. My dad served in the Korean War, I had three uncles in WWII and another uncle who served in the late 50's. My ex husband was also an Army vet. One of the things I will be doing soon is pen pal with a soldier through a program called Adopt-a-Platoon. It should be great.

I have been trying to get up earlier in the morning but it is soooooo hard. Getting some coffee down me and trying to wake up. Glad to see folks posting. Got to run errands today and Aidan has to go to an appointment at the VA but I will be back on later to answer posts in more depth. I never thought I'd say I was looking forward to going to the dump. Love that Swap Shop, though. Hope everyone is having a good day.

[StarFire]

Good morning to my peoples! Slainte!

BTW, I would like to thank all our vets here for their service. I am very big on that. My dad served in the Korean War, I had three uncles in WWII and another uncle who served in the late 50's. My ex husband was also an Army vet. One of the things I will be doing soon is pen pal with a soldier through a program called Adopt-a-Platoon. It should be great.

I have been trying to get up earlier in the morning but it is soooooo hard. Getting some coffee down me and trying to wake up. Glad to see folks posting. Got to run errands today and Aidan has to go to an appointment at the VA but I will be back on later to answer posts in more depth. I never thought I'd say I was looking forward to going to the dump. Love that Swap Shop, though. Hope everyone is having a good day.

Popping in to wish peace and love to all of you. 8:15 tomorrow morning is the ultrasound...I hope all of you have a fabulous day!

Star

[Dean Ga]

Hellboi

How much methotrexate do you take ? And if I may ask what type of RA do you have? You are getting all of your care though the VA right dude? What is purpa? I have never heard of this,and if this is a side effect of the metho I truly would like to know.

Just asking here as I am hoping that you are not getting care from and outside source and trying to balance the 2 together.

Dean

[Shyfemmekat]

Popping in to wish peace and love to all of you. 8:15 tomorrow morning is the ultrasound...I hope all of you have a fabulous day!

Star

Hey sweetie! Any word yet on the test?

[Shyfemmekat]

Hi folks!

I didn't sleep well so I was worn out yesterday. Then my back started acting up so it was a loooooooong day. I couldn't get comfortable because no matter how I sat/lay down it hurt. So far, so good this morning and hopefully it will be fine today.

Miami, I know you've been feeling crappy and I'll give you a call later today.

[Shyfemmekat]

Happy Sunday All. Hey, look, I made it back in again! I am so hoping this is a good omen for the next year. One can hope. I am just going to read all the posts, and think. I so appreciate everyone sharing on here, it means a lot to me, thank you. And thank you for my welcome here. My illness and the lowered income have been very isolating at times. Blessings to all. With luck, back again soon. Coming in regularly, mutli-quote posts, wow... I feel like Supergirl! *waves*

You are kicking butt on the multi-quote posts. Good to hear from you and I think things are looking up.

[Dean Ga]

Morning all,

Just thought I would share with you all something. I am sure that this is already common knowledge but I feel it needs to be visited because it worked miracles for me.

About four months ago the VA sent out letters to all of us that had an auto immune disease and brought us in for a simple blood test. They were looking at our Vitamin D6 level. ( phoenix VA only)

Mine was at 18, that’s very low. My appointment was in a week and when I saw my rheumatologist she explained to me the role that vitamin D plays in auto immune diseases. For me she wanted my Vitamin D level up to at least 36. So now I am taking 4000 units of Vitamin D daily to maintain that level. It took about a week for the levels to begin to make a difference but once the levels hit a therapeutic level the bone pain went from a level 8 on the pain scale to a 4. I was in heaven.

She also told me how there is new findings out there on how vitamin D helps people with MS and other auto immune diseases. I will not go into this here; I strongly recommend that if your doctor has not put you on a vitamin D regimen that you ask them to do the blood test and then start you on one. If you are on one and not taking it … take it

(I am not a doctor, but my rheumatologist did say that finding are surfacing that VitD is in large doses helps the body rebuild the sheath around the nerve. Worth checking into)

[Dean Ga]

ok that is all the posting for today, this flairup is still kicking my backside, off to lay back down. My mouth is still raw and all I can eat is is jello and really runny oatmeal.

dean

[Shyfemmekat]

Morning all,

Just thought I would share with you all something. I am sure that this is already common knowledge but I feel it needs to be visited because it worked miracles for me.

About four months ago the VA sent out letters to all of us that had an auto immune disease and brought us in for a simple blood test. They were looking at our Vitamin D6 level. ( phoenix VA only)

Mine was at 18, that’s very low. My appointment was in a week and when I saw my rheumatologist she explained to me the role that vitamin D plays in auto immune diseases. For me she wanted my Vitamin D level up to at least 36. So now I am taking 4000 units of Vitamin D daily to maintain that level. It took about a week for the levels to begin to make a difference but once the levels hit a therapeutic level the bone pain went from a level 8 on the pain scale to a 4. I was in heaven.

She also told me how there is new findings out there on how vitamin D helps people with MS and other auto immune diseases. I will not go into this here; I strongly recommend that if your doctor has not put you on a vitamin D regimen that you ask them to do the blood test and then start you on one. If you are on one and not taking it … take it

(I am not a doctor, but my rheumatologist did say that finding are surfacing that VitD is in large doses helps the body rebuild the sheath around the nerve. Worth checking into)

Thank you...when I get my medical insurance situation taken care of and get new doctors I will ask about this. Hope you feel better soon.

[Woodie69]

Hi SFK and Everyone,

It has been such a long time. I hope everyone is doing well, and is safe, & happy. I am fine, doing alot of gardening, being outdoors, building my birdhouses and birdfeeders, and enjoying life as it is. It is wonderful to come back to the old stomping grounds here, and see everyone.

Peace,
Andrew

[hellboi]

I'm on 5 units, injectable. I get all my care throughthe VA. I've never thought to ask what type of RA it is, lol, and the docs have never expounded. They just call it RA.

The purpa is this swelling of allthe soft tissues of the body. i'm told it typically starts in the lower extremeities (thoug h not always..but mine has) and works it's way up your body. It can be a rare side effect of the methotrexate, but mine is the more typical..the one that occurs as a result of the suffering of many strep throat infections, and the antibiotics given for it. (that is likely what has caused it for me.) It occurs most often in people with weakened or suppressed immune systems.

I've been on the vitamin D, calcium, and folic acid since day 1 of my chemo, a few years ago. I must confess to not asking a ton of questions about my care to my docs..I just mostly complain about whatever side effects I suffer and argue with them about whether or not I will continue to put up with them and take the meds. lol

[Shyfemmekat]

Happy Saturday to all the peoples!
It's a beautiful day here, much cooler and sunny. This is what I thought I would be getting for summertime in NY! LOL Oh well, it was worth waiting for. Feeling pretty good this morning, fixin to head out to the transfer station. Y'all know that means the swap shop! Freeeee stuff! How has everybody been doing? Anyone got big plans for this weekend?
I know I am behind on phone calls etc.. as usual, we have been formulating a routine around here. Fridays are Date Night and we have decided to make Sunday a day of rest. This gives Primo a chance to catch up on all his shows that are on the DVR. It gives me time to read, and to catch up on email, letters and phone calls.
Sending out good wishes to all, holla at me.

[Dean Ga]

Hey well it’s a monsoon kind of rainy day here but none the less very welcomed and my roses and lawn do love the extra water.

Shy, I am so glad that you have set aside a day just for the both of you, that is so needed in a relationship. And to go the transfer station, what fun that must be… yoo-hoo you go!!!! Find that some thing special!!!

Hellboi,

Well I must say you have me on a quest here, I just can’t seem to find anything other than your description of purpa. “And I must admit I am alarmed just a bit here.”
A unit is calculated in .01 increments. So as I understand it you take .5 units of Methrotrexate once a week, am I correct on this? And you have been on this dosage for longer than a year, am I correct on this?

We are both Vets, and too respect our privacy as this is a public form I would like to ask you a couple of questions in private if that would be ok with you. Please let me know as I will not e mail you here with out having your permission.

Dean

[hellboi]

The way my doc says it sounds like he's ssayin "pur pey ah", but he is Korean and has a heavy accent, so I'm not at all sure about the spelling.
I think Shy found something on it not all that long ago. And I bleieve she spelled it "purpa"

Yeah, if ya want to pm me that's fine.

that is the doseage I currently take, but no I haven't been on that amount for over a year, only just bout 8 weeks.
Prior to that I took the pills, and only 6 of them per week. In Oct I go back to the pills, the old doseage as well.

[lipstixgal]

I have a question, does anybody try working out for exercise and to lose weight, well I did it on Saturday took a dance class which was very aerobic and caused muscle, joint knee pain and tiredness. Don't really know what to do?? I have CFS so maybe that aggravated it I don't know what to do??


Any suggestions??

[Dean Ga]

Lipstixgal,

Try having your doctor do a simple blood test and see just where your Vitamin D6 level is. You will want your level some where in the numbers of 35 to 38. You will also have to take calsium along with the vitamin D6. Your doctor will tell you how much VitD6 you will need to take.

There are some astonishing findings coming out in the medical journals here and in Europe about the medical values coming just short of using the word "miracles" of Vitamine D.
I have read articales now for diseases that are being studied futher like MS, arthritis , fibromyalgia,and today alzheimers, my doctor was all a buzz with this artical and study saying that she was going to start all of her patients on VitD6 to see if she saw any improvement .

I spend way to much time at the VA with Doctor appts, that I go the the library and check out the latest medical journal to read while I waite, the reading material in the lobby and waiting rooms is well shall we just say way to old to read.

Dean

[hellboi]

*shrugs* well I reckon I musta already satisfied that curiosity.

[BlueMoonWolf]

I have a question, does anybody try working out for exercise and to lose weight, well I did it on Saturday took a dance class which was very aerobic and caused muscle, joint knee pain and tiredness. Don't really know what to do?? I have CFS so maybe that aggravated it I don't know what to do??
Any suggestions??

well my suggestion would be to talk with your doc. the next suggestion would be something in the water instead of doing the tango... or combine them.. tango aquasize LMAO

*shrugs* well I reckon I musta already satisfied that curiosity.

your ears must have been ringing, was wondering how you are doing

[Dean Ga]

Very interesting ,
I was at the Va today and saw a class on sitersice. Exercise while sitting on a chair using different strengh bands as u progress and music if u choose too. Never sceen this done, nor atteneded a class but might be something fun.

Dean

[Dean Ga]

Walks in and pulls up a chair turns it backwards and sits, crosses my arms and rests my head, trying to digest the long appt today with my rheumatologist. Hellboi, have not forgotten you just need a little time here, k bro.

Dean

[BlueMoonWolf]

ok I have been a bit MIA but I have a note from my doc... sorta

Found out the new crop of lumps are all good little lumps... problem being is one has shifted and is giving a big bear hug to some nerves and blood vessels that lead to my arm. So it's either burning, pins and needles, or just sitting there doing nothing that it's told... kinda like an average teenager. At the moment my doc isn't recommending we do anything other to try to reduce the swelling. He is leery of surgery at this point simply because there is an 85% chance that a vessel will blow up (vaculitis is a bitch and I still can't spell it) or a nerve will be nicked and leave me with an accessory rather than a functioning arm. So away we go on that adventure.

Good side.. i am ambidextrous, it hasn't taken much to switch over when I have to. I was writing a note and looked down to realize i was writing with my left hand. *shrug* it use to be just a weird fact about me but it sure as hell has come in handy now. yes, pun fully intended. Another good side, I now have more time with my home care aide. I also will have access to a few other programs that will help me in about 100 different ways... Kinda crazy that you have to get sicker before you can get help to stop slipping through the cracks... *snort* maybe I shouldn't have lost all that weight.. I might have stuck in a crack sooner than this.

So that is why I have been MIA, just hurts to type too much, but I have been ghosting.

[Shyfemmekat]

Good morning, y'all!

I have been MIA for a minute. Primo and I have been very busy house hunting the last few days and we have found something really nice. Will be continuing negotiations this weekend and the next few days as well. It is a wonderful place not too far from where we are now. A bit about it: 3 bedrooms, 2 baths, living room, 3 season porch, woodstove and a separate family room with fireplace. There is about 1-1/3 acres with a woodshed and another shed that could be used for a little shop for Aidan, garden supplies and for the riding mower, etc. There are pear trees, some other fruit trees, rose bushes and some perennials. Much more but you get the idea. Sooooo...we are praying very hard.

Will begin catching up posts later today and returning calls.

[BlueMoonWolf]

Good morning, y'all!

I have been MIA for a minute. Primo and I have been very busy house hunting the last few days and we have found something really nice. Will be continuing negotiations this weekend and the next few days as well. It is a wonderful place not too far from where we are now. A bit about it: 3 bedrooms, 2 baths, living room, 3 season porch, woodstove and a separate family room with fireplace. There is about 1-1/3 acres with a woodshed and another shed that could be used for a little shop for Aidan, garden supplies and for the riding mower, etc. There are pear trees, some other fruit trees, rose bushes and some perennials. Much more but you get the idea. Sooooo...we are praying very hard.

Will begin catching up posts later today and returning calls.

OOOh I will keep my fingers crossed that you do get it!

*evil plotting grin* that way I can come down and raid your fruit trees to do some canning!! yep that would be my sole goal.....NOT!!!

keeping everything crossed and sending good stuff for you and Aidan

[Marblez]

My own dealings with physical disability and a blow to self-esteem stem from not an ailment but from physical injury, in June 1983, I was a victim of a hit-and-run, was left on the bank of an irrigation canal, a Lady in a farm house across the road heard, what she said sounded like a animal screaming, went out to investigate and found me, the only thing I recall from that instance was the pain and someone asking me my name (which all I would say is "call my dad and phone number" over and over til I was out again).

I could go into each time I woke up until finding out the extent of my injuries, but I think I am passed wanting to know every detail of the whole ordeal, needless to say my injuries were extensive, top down, a gouge on top of my head, something came through a vent in my helmet (forgot to mention I was on my little motorcycle), severe left shoulder separation, internal injures, shattered right pelvic and hip, fractured femur, compounded knee fracture, shattered tibia and fibula, fact is lower leg was allmost severed, this was all on the right side, left leg was brused and knee was dislocated.

I spent a month in ICU, had a machine breathing for me for the first week or so, total time spent in the hospital was almost 7 months, it was all pretty much a blur at first, but I do recall the doctors telling me that it might be better to remove the right leg from above the knee, I told them, NO!, then they said maybe below the knee some, again I said, NO!, then they said the foot may have to come off, I told them NO, I'm keeping all my parts if at all possible, so I did, but they ain't pretty.

Now I have a right leg that is about 3 or so inches shorter then the other, I walk pretty well with a odd limp, not really noticable unless I am tired, if I am in unfamiluar ground I use a cane, but all 10 of my toes wiggle, although the right ankle was fused.

All my young life I was an athlete, fastest runner in grade school, competitve sports, track and field, swimming, etc., after leaving school, softball and roller skating were my favorite activites to do, aside from dancing , this accident was a HUGE dent in my self-esteem, for the first 3 - 4 years I was dependant on others, something that was a bit hard to deal with, although I'm mostly over it and comfortable with myself now, I still can get into small depressions now and then.

The problem I have with it all now is the scars and how others deal with them, they ain't pretty, although my arms and face were spared, save a small scar under my jaw, the rest of me looks like some mad scientist when hack happy, incision on left shoulder, down the middle of my stomach, and the right leg is messy, the reactions people have when they see them range, they run the gambit really. Once when my nephew was about 3 or 4 he tried to wipe away a rather large ugly one on back of my thigh and was upset when it wouldn't go away, that made me cry, not for myself but for the fact his little mind was trying to make it better, ah the innocence of the young.

I rarely wear shorts or a swim suit at all anymore, weather to spare others or myself any discomfort, I don't know. I've been single for 20 years there abouts, self imposed for several reasons I suppose, once discovering friends have a hard time dealing with the change in you as well as your own mental changes tend to make one hide out, as it were, within the comfort of family, even some of them were shy at first.

Thank you for this topic, appreciate being able to express myself a bit on the topic.

[BlueMoonWolf]

well Marblez... about all I wanna do is give you a big hug! I am so glad you found our little space and then had the courage to tell us your story!

There are so many things that I want to respond to in your post, it's going to take a bit so please be patient. Until then, just know that you have found family.. many of us never thought we would ever be here, but we are. While many of us have not been in your position we may be able to understand different parts.

[Shyfemmekat]

Hi SFK and Everyone,

It has been such a long time. I hope everyone is doing well, and is safe, & happy. I am fine, doing alot of gardening, being outdoors, building my birdhouses and birdfeeders, and enjoying life as it is. It is wonderful to come back to the old stomping grounds here, and see everyone.

Peace,
Andrew

Wow, it is good to hear from you. It's been awhile. Hit me up with a PM...been lots of changes since I talked to y'all last...

[Shyfemmekat]

OOOh I will keep my fingers crossed that you do get it!

*evil plotting grin* that way I can come down and raid your fruit trees to do some canning!! yep that would be my sole goal.....NOT!!!

keeping everything crossed and sending good stuff for you and Aidan

We appreciate it. Lots of paperwork and legal crap yet to come. Bleah. I'll be glad when that's over with and we can get down to the real stuff...like decorating.

[Shyfemmekat]

ok I have been a bit MIA but I have a note from my doc... sorta

Found out the new crop of lumps are all good little lumps... problem being is one has shifted and is giving a big bear hug to some nerves and blood vessels that lead to my arm. So it's either burning, pins and needles, or just sitting there doing nothing that it's told... kinda like an average teenager. At the moment my doc isn't recommending we do anything other to try to reduce the swelling. He is leery of surgery at this point simply because there is an 85% chance that a vessel will blow up (vaculitis is a bitch and I still can't spell it) or a nerve will be nicked and leave me with an accessory rather than a functioning arm. So away we go on that adventure.

Good side.. i am ambidextrous, it hasn't taken much to switch over when I have to. I was writing a note and looked down to realize i was writing with my left hand. *shrug* it use to be just a weird fact about me but it sure as hell has come in handy now. yes, pun fully intended. Another good side, I now have more time with my home care aide. I also will have access to a few other programs that will help me in about 100 different ways... Kinda crazy that you have to get sicker before you can get help to stop slipping through the cracks... *snort* maybe I shouldn't have lost all that weight.. I might have stuck in a crack sooner than this.

So that is why I have been MIA, just hurts to type too much, but I have been ghosting.

So you can quilt and can with either hand?

Glad to hear they are going to give you access to more help. It's about time. I always wonder who decides that crap, don't you?

Now if you're stuck in a crack, your crack is also stuck...right? Almost sounds like it ought to be a little town in Kentucky. Hey, y'all, I'm from Crackstuck...

[Shyfemmekat]

well Marblez... about all I wanna do is give you a big hug! I am so glad you found our little space and then had the courage to tell us your story!

There are so many things that I want to respond to in your post, it's going to take a bit so please be patient. Until then, just know that you have found family.. many of us never thought we would ever be here, but we are. While many of us have not been in your position we may be able to understand different parts.

I know that's right.

[Shyfemmekat]

Well, Monday morning rolled around again. Timely as all get out, just like it always is. I have to get on the phone later with the "M's", Medicare and Medicaid. Lots of crap still to fill out and check on. Ugh.

Primo is working on school stuff and the cats are all asleep. I've got The Allman Brothers cranked and am getting ready to down some more coffee. Been really exhausted. I took a four hour nap yesterday and then turned around three hours later and went to bed for the night. Geez o'peas. I guess all the changes in my life are catching up with me.

Marblez, welcome to the thread. Glad to have you. This is a great bunch of folks. Will answer your post at length when I am not so damn tired.

Where are all my peoples at? Miami, hellboi, Gabe, daBonster, femme-licious, all my others..holla. Let me know what's new.

[Shyfemmekat]

I have a question, does anybody try working out for exercise and to lose weight, well I did it on Saturday took a dance class which was very aerobic and caused muscle, joint knee pain and tiredness. Don't really know what to do?? I have CFS so maybe that aggravated it I don't know what to do??


Any suggestions??

I have heard of modified yoga, etc. I think they have DVD's of it.

[ArchAngel Gabriel]

Where are all my peoples at? Miami, hellboi, Gabe, daBonster, femme-licious, all my others..holla. Let me know what's new.

I have been in michigan at fest learning how to drum among other things. I have just about an hour ago arrived back at my home with julie cat... tired catching up reading going to work tomorrow will try to post more in a day or so

G.

[femme-licious]

Well, Monday morning rolled around again. Timely as all get out, just like it always is. I have to get on the phone later with the "M's", Medicare and Medicaid. Lots of crap still to fill out and check on. Ugh.

Primo is working on school stuff and the cats are all asleep. I've got The Allman Brothers cranked and am getting ready to down some more coffee. Been really exhausted. I took a four hour nap yesterday and then turned around three hours later and went to bed for the night. Geez o'peas. I guess all the changes in my life are catching up with me.


Marblez, welcome to the thread. Glad to have you. This is a great bunch of folks. Will answer your post at length when I am not so damn tired.

Where are all my peoples at? Miami, hellboi, Gabe, daBonster, femme-licious, all my others..holla. Let me know what's new.

Welcome Marblez! *waves*


Aw, Shy, sorry you are so tired, but sounds like you are settling in nicely! So happy to hear that....

I have been totally MIA...


Good friend had amazing attack last Saturday (week ago), was infected galbladder, and helped with the ER admission, bedside sitting at hospital and after recovery, and home help a bit. Due to bad back and CFIDs just three days of staying up at bedside in hospital pretty much trashed me. Pal was out of woods on Tuesday and I just collapsed. Barely getting up now. First time on BF since before the event. That was something though, I feel for anyone with serious galbladder problems.

And, sadly despite empty bed in the room the whole time, lying down was not an option nor was rollaway bed.

Glad I was there to make sure it all went smoothly, my friend's family didnt make it to hospital for a day or two. Lordy though! I am fried, health suffering for now.


Oh, and by the way folks, my real diagnosis is M.E. (myalgic encephalomyelitis) a similar and serious illness. I don't bother dropping that name on people right away, because many barely know what CFIDs is, and that term almost sounds like I am dying of brain cancer or something, lol.

This my first time on site in about a week.

Hope everyone is doing okay, I must go back to bed now. Hope to catch up with you all after I have rested a bit more.