Thank you Wolf..sometimes I see myself as that..healing well, and able to spend more time on the computer.. Need to check out that Yahoo list!Originally Posted by SirWolfalot
Thank you Wolf..sometimes I see myself as that..healing well, and able to spend more time on the computer.. Need to check out that Yahoo list!
[SIGPIC][/SIGPIC]
Hi Everyone,
I hope everyone is happy and healthy. I just went through another MRI of my wrist now. Unfortunately, the tech. broke my little finger again when he tried to jam my hand into some sort of brace. I about cried throught the entire time I was there. From that point I went to physical therapy. The therapist agreed my hand was worst than it was before I even broke it originally. UGH! So, she went and got the ortho. surgeon. He looked at the MRI and my hand, and just shook his head. I knew it was bad. I give up. I have never in my life experienced so much in trying to heal my body before.And it is getting harder and harder as I get older. I just don't understand why it is.
I know I was up and about in about two months after I broke my foot in junior high school. I just cannot figure out why my wrist, elbow, and hand/fingers are taking so long.
My neuro. upped my meds for my seizures. He told me it was appropriate because of the kind of seizures I have. So, at this point, I am just going with the flow. So far, I really haven't noticed any difference. I guess time will be a key factor in this.
I am lifting everyone up in prayer tonight. God bless you all.
Peace and love,
Andrew
"Be aware of how you take away hope from another human being." Oliver Wendall Holmes
Hey guys....
Thanks for the support lately. I found a very therapeutic feature of this website....the ignore button! Wow, has it made my life easier! It was also good to have the "forced" break while the website was down.
I have my consult with the cardiologist on Friday. Think good thoughts....heart rate is still all over the place, especially with the heat...
Andrew-Have they checked your bone density? I just wonder whether that is part of the healing complications. I'm sorry to hear they broke your finger again
How is everyone else doing? I've missed chatting with everyone! Drink lots of water!!
"My soul, wait in silence for God only, for my hope is from Him. He is only my rock and my foundation, my stronghold; I shall not be shaken."
~Psalm 62: 5-7
The ignore button is my Mary J. Blige feature...(No More Drama)
Hope your consult goes smoothly.
Andrew, that's awful about your finger. I'd be ripshit if a tech snapped mine.
Hope everyone is well. I figured out a decent balance for my food diet thing. I am not eliminating soy. It's too good to not have.
If any of you have chronic dry eyes to the extent of blurry vision and the sandpaper feeling, I gotta tell you I have been on Restasis (cyclosporin eye drops) for over 2 years now and I am at the point where I can actually not wear my wraparound glasses outside for bits at a time (wear them to prevent wind damage to corneas). My vision also went from 20/40 to 20/30. The medcine actually repairs abrasions to the corneasJust wanted to give you all the tip incase any are suffering from it. I know many autoimmune diseases cause dry eyes and sometimes the meds too. It's pricey though...but well worth it.
best
GB
Hey guys....
Thanks for the support lately. I found a very therapeutic feature of this website....the ignore button! Wow, has it made my life easier! It was also good to have the "forced" break while the website was down.
I have my consult with the cardiologist on Friday. Think good thoughts....heart rate is still all over the place, especially with the heat...
Andrew-Have they checked your bone density? I just wonder whether that is part of the healing complications. I'm sorry to hear they broke your finger again
How is everyone else doing? I've missed chatting with everyone! Drink lots of water!!
"I've been imitated so well I've heard people copy my mistakes."
James Marshall Hendrix
Hi Everyone,
I am just getting ready for bed. I am exhausted from work. My hand is throbbing. I go to phys. therapy tomorrow, so hopefully it will feel somewhat better.
My balance is so off again. I am starting to think about MS at this point. I am looking at my symptoms, and the duration periods. The biggest thing I have is fatigue. That seems to be a constant. My dr tells me it is just being fat. Sheesh, everything to her is just because of my being fat. I just am wondering about how good she is as a dr at this point. If that is all she can go on, maybe I should be getting another opinion on this. I also am wondering if it has to do with my head injury. There is just so many factors that go into head injuries...
Peace and love to all,
Andrew
P.S. The ignore key is a gift from God! I would be lost without it. I use it all the time. There are just way too many ignorant, rude people on this site that I just cannot handle emotionally. I am not going to be the one to throw the first stone. I will let them.
"Be aware of how you take away hope from another human being." Oliver Wendall Holmes
Hey Everyone...
Mister Woodie...good to see you!
You know I was reading that last post of yours, and thought to myself...CFS has many symptoms that go along with it, and I think one of them has to do with one's balance...you should think about looking into all that...you'd be surprised at the number of symptoms surrounding it...
Your Doctor...forgive me here...seems a bit on the lazy side to me. If her answer to something is that you are "fat"...lol, well then why did she not follow that thought up with a prescribed solution? Her job is to make sure that you get better...not worse and more depressed...she should have been more sensitive of the fact that your personality dictacts statements like that in a physiological manner...so her words harm you...not heal you! Tell her to follow that comment (loose and lazy diagnosis) up with a list of helpful possibilities...for gawd sakes, there are many things she should have addressed if this is her official answer...yes?
I'm just sayin....lol, you could get aquatic therapy, which is a blast and really helps one's body move better...you could get a prescription to a personal trainer at a local health club, you could get a freaking pill...lol, ya know?
I would be curious to know how she thinks saying that kinda shyt was of any help for you...without being followed up with a "Let's see what we can do about that...." kinda thing.
Ok...well, off to work for me!
Drink that water peoples, and stay outta the heat if at all possible!
Good To Hear From You
Hey guys....
Thanks for the support lately. I found a very therapeutic feature of this website....the ignore button! Wow, has it made my life easier! It was also good to have the "forced" break while the website was down.
I have my consult with the cardiologist on Friday. Think good thoughts....heart rate is still all over the place, especially with the heat...
Andrew-Have they checked your bone density? I just wonder whether that is part of the healing complications. I'm sorry to hear they broke your finger again
How is everyone else doing? I've missed chatting with everyone! Drink lots of water!!
Wondered how you were....will keep you in prayers for Friday...
SFK
Subtle as a hand grenade
"Sweet like candy to my soul, sweet you rock and sweet you roll.."
Hey Good Peoples,
Wanted to check in and say hello to everyone. I've been fighting a cold or something, been sleeping like crazy.
GB, it's good to see you again! Keep rockin'!
Whisper, hope you are feeling well. Let us know how you are.
Andrew, I would see if you can get a second opinion. Yeah, being heavy is not great for your health. That's the boat I'm in, especially with my family's horrible health history. Therefore I am trying to lose a gazillion (well, it SEEMS like it) pounds. But being heavy does NOT explain away EVERY single symptom.That crap pisses me off. Gotta ask, is it a skinny doctor? Either way, I would start documenting your symptoms and get a second opinion.
Got a call yesterday asking if I would do a very short radio spot for the Partnership for Prescription Assistance http://www.pparx.org. They called back today and it looks like I will be taping it tomorrow afternoon. It will be airing on 680 radio stations, some I guess are Westwood One, CBS and Fox News radio, but I don't know when yet. Gotta get the word out, too many people are broke these days and sick to boot.
Sending you all some of the lovely sunshine we have here...
God Bless,
ShyFemmeKat
Subtle as a hand grenade"Sweet like candy to my soul, sweet you rock and sweet you roll.."
Hey Shy
Hope you feel better soon
GB
Hey Good Peoples,
Wanted to check in and say hello to everyone. I've been fighting a cold or something, been sleeping like crazy.
GB, it's good to see you again! Keep rockin'!
Whisper, hope you are feeling well. Let us know how you are.
Andrew, I would see if you can get a second opinion. Yeah, being heavy is not great for your health. That's the boat I'm in, especially with my family's horrible health history. Therefore I am trying to lose a gazillion (well, it SEEMS like it) pounds. But being heavy does NOT explain away EVERY single symptom.
Got a call yesterday asking if I would do a very short radio spot for the Partnership for Prescription Assistance http://www.pparx.org. They called back today and it looks like I will be taping it tomorrow afternoon. It will be airing on 680 radio stations, some I guess are Westwood One, CBS and Fox News radio, but I don't know when yet. Gotta get the word out, too many people are broke these days and sick to boot.
Sending you all some of the lovely sunshine we have here...
God Bless,
ShyFemmeKat
"I've been imitated so well I've heard people copy my mistakes."
James Marshall Hendrix
(((Shy)))
That is so cool...!
Radio play, sounds kinda Hollywood Missy...lol!
We got your card, and I envy the time you have/take to reach out to so many!
Just for that, I will make sure I get you a copy of the next BFCDX mix round that we are doing...Thanks for being you, and give your man our best!
Shy,
Yep, the dr is quite thin. I think she can eat anything and everything and never gain an ounce.
I also have a deformed chest from my top surgery. That doesn't help at all. Even the dr noted that in my medical record. Unfortunately, I will have to have more surgery to correct what was done before I can have my top surgery completed the way I want it to be done. It is a damn shame that everything in life is based on money. I hate it.
Congrats on the radio spot! WoooHooo!
Sir Daywalker,
Thanks for the warm greetings!
Peace to all,
Andrew
"Be aware of how you take away hope from another human being." Oliver Wendall Holmes
Woodie
CFS~~~Chronic Fatigue Syndrome
Check out the info on the web my friend!
Sir Daywalker,
Thanks for the CFS info. That is quite interesting. I am definitely checking it out.
Andrew
"Be aware of how you take away hope from another human being." Oliver Wendall Holmes
Hi Everyone,
I have to tell you about a conversation I had with my adopted sister yesterday. She was yelling at me to do something that I just didn't understand what it was she was asking me to do. So, I did what I thought she wanted me to do. Finally, she came up to me to talk to me, and I looked at her and I said "You know, I didn't ask to be dropped on my head. I didn't ask for this brain injury. Just as hard as it is for you, can you imagine how hard it is for me?" With saying that to her, she broke down and just cried like a baby. I didn't want for her to cry, and didn't mean for her to cry. She apologized, and we talked some more.
It is amazing to me how quickly some forget that those of us with disabilities get overlooked, or are ignored and treated like "nothing is wrong" type of attitudes, when our disabilities need to be addressed on a constant basis. It's so depressing to have to constanting try to understand everything all the time. I always ask Rosie if I die, when I go to Heaven, will I have a complete brain and skull as I once did as an infant? And she always smiles at me, and says yes. I tell her that this life is nothing but hell for me. I just cannot imagine anything worse than having such a devistating injury as mine is, but I am sure there are some that are worse. Just having to live as I am - it is like an unending nightmare. For those who just breeze through life having door after door opened for them, I just shake my head and wonder how blessed they are, and how stupid that they don't even know it.
Thanks for listening. I could just go on and on about this. I will be lifting everyone here up in prayer tonight.
God bless you all.
Peace and love,
Andrew
"Be aware of how you take away hope from another human being." Oliver Wendall Holmes
I used to think that this was about having a "Hidden Disability" and that if we just had a cane or a wheelchair, the world would see how "sick" we are. Then I started to look at the way the world treats people who are sick, or differently abled and even with cane...crutches...wheelchair...handicap placard included and it was just as bad if not worse.
I have been keeping up and reading this thread. It was huge for me to have when I wasn't working for a short time and home recovering from a flare of Crohn's Disease, I've battled most of my life. I find myself unwilling to "Out" myself as someone with a chronic disease because of the lack of empathy out there and also because I don't want to expose such an Achilles heel either. Taking time from work was a blessing and a curse. I had the time I needed to semi-recover but returned to a highly competitive environment to be seen as a liability.
ANYhoo...Thanks for being there for me, you may not have even known, but you helped carry me through! OD
"The world resists language as the grain of a tree resists the saw, and saws take the form they do partly because wood is what it is. We sense the presence of things through this resistance...but as with the saw, language differentiates by an act of violence."R. Scholes
Andrew....
The conversation with your adopted sister sounds painful. It is hard when people judge without all the facts. You've had more than your share....Many hugs to you.....
An update from the den....
I had the cardiac consult on Friday. All is ok with the exception of the actual heart rate. He did say that I have a little room to exercise, as I can get up to 160 bpm. He is starting me on a calcium channel blocker that should drop the heart rate but not affect my asthma. He did say the first line drugs would be a major problem, as it would neutralize the rescue inhaler's "rescue" properties.
How is everyone else doing? Let's hear some updates!!
~Psalm 62: 5-7
Andrew....
The conversation with your adopted sister sounds painful. It is hard when people judge without all the facts. You've had more than your share....Many hugs to you.....
An update from the den....
I had the cardiac consult on Friday. All is ok with the exception of the actual heart rate. He did say that I have a little room to exercise, as I can get up to 160 bpm. He is starting me on a calcium channel blocker that should drop the heart rate but not affect my asthma. He did say the first line drugs would be a major problem, as it would neutralize the rescue inhaler's "rescue" properties.
How is everyone else doing? Let's hear some updates!!
Good Morning everyone...!
Lionandlamb, sounds like you have a Dr. who listens and cares, that is half the road to recovery of anything in my opinion...without a good Doc, most of us would sit stagnet in misery and exclusion.
Woodie, I am happy to hear that your sister actually took a moment to "feel" you, even if it meant tears...
OD...you know this thread has become a family, and your input has become as encouraging to all of us as well...at least to me.
Shy...as always, M'Lady & I are wishing you & yours well...
Updates...hhhmmm, well I still have the pain thing to deal with, a little depression creeps through every now & then...lol, I know...you all say "Unkle Day depressed...? Neva...", but alas I am only human, and it is one of those bonus round perks that come within the territory of MS. I am thankful to have the insight to know when it is coming, to know that I will just have to ride it out, to know what areas of weakness it will set up camp upon, to know that outlouding what I feel is happening is very important, but to know I have plenty of homefront support helps heal the boo-boos...lol!
Woodie, glad you checked out that info, if not for yourself...but for those around you that may be dealing with it as well...
To Everyone in here....Stay Gold...yes?
Hey there Daywalker
Chronic pain can be very depressing, it's been my experience so far that as the pain grows worse so does the depression, which can really take its toll after a while. I've recently had to go off of 75% of my meds for undisclosed reasons, and thusly am awake at odd times like 3:30am, and now 5:30am due to my pain levels.
I think this type of thing also takes its toll on our social arena. It's pretty difficult to keep appointments, attend social events and gatherings, and get out and do things when you really feel like laying down and dying right there on the spot. And then there's the repercussion of cancelling out of plans because of pain, depression, whatever the situation might be at the time. People grow tired of it, and eventually you no longer hear from them, etc., etc.
I think these sorts of things which are associated with disabilities really affect our life and self esteem in some large ways at times. It's really kind of sad when you think about it. Here people are with this illness, injury, or whatever the situation might be, and how it can so greatly affect their entire life and change their world.. it's really pretty amazing when you stop and think about it.
Have a wonderful day everyone.
~TD~
Outlaw Daddy,
I had a good friend of mine in high school with Crohns Disease. He had a bag by the time he was 16 yo. He celebrated having a bag because his body was just so worn out from battling the disease. It is such a horrible, nasty disease. I thought by this time in life that more drugs and cures would be readily available.
Top Dadddy,
I think you hit the nail on the head. It is so depressing when you have to fight a disease or a disability each and every day of your life. I often wonder what life is like for those who don't have to struggle day in and day out with an illness, disease, or life-altering injury. I know that I avoid social events/parties/etc. because of my head injury. You cannot imagine the kind of reaction I get when someone I meet for the 1st time, and I cannot tell you their name. I get looked at with such anger in some folks eyes. Or if my sister tells them that I have a head injury and am a bit slow, some will talk down to me - talk at me - or yell in my ear like I'm deaf. Sheesh. No, she said I was slow. That has nothing to do with how I get treated. Or the folks who treat me like I'm retarded. OMG. That about sends me over the edge of sanity sometimes. It is beyond insulting, offensive, and manipulative.
At work I have a co-worker who has a brother who is mentally retarded. She went off on me one day telling me how offended she was when I referred to her brother as being mentally retarded. She told me that I should refer to him as mentally challenged. I give up. I feel it is a damned if you do and damned if you don't at work.
Sir Daywalker,
You are right - homophobia in medicine is not healthy!
Lion&Lamb,
I am relieved to read about your trip to the dr. That is great news.
Love and peace,
Andrew
"Be aware of how you take away hope from another human being." Oliver Wendall Holmes
Greetings!
Well, hello, TD! So good to hear from you!!!
I hear you about the pain thing. If I manage to sleep for more than three or four hours at a stretch, then when I do wake up I hurt like crazy from the fibro. Last night once I finally went to sleep I fell out for almost 5-1/2 hours and my back was hurting so bad when I did get up I had to resort to an Ultram.
Conferring With Moon by William Ackerman
http://www.amazon.com/gp/product/B00...8869550?n=5174
Yes, a lot of people who don't want to roll with our situation DO fall by the wayside. I saw it happen to most of my dad's friends when he became chronically ill. It made me angry. In my situation it hasn't been much of a problem, really, because most of my friends fell by the wayside when I fell in love with this burly stone butch who captured my heart, LOL!
Oh Lord, depression. DAY, I was a bit surprised to hear you struggle with that, too, although I know you have MS. I have been having a hell of a time with depression. I go see Da Phid (the Phd psychiatrist) on Friday, which I am actually looking forward to. (I can hear y'all now.."Damn, we knew that b$&*h was crazy..")
Yeah, about the radio thing...I heard back from them and it will be running in a few weeks I guess. They are going to send me an MP3 of the spot when it's completed. More people need to know about the Partnership for Prescription Assistance. Too many people are low income, ill, and need meds. It's easy to apply for. Please help me spread the word:
http://www.pparx.org or call 1-888-4PPA-NOW.
Hey Kel! Keep us posted on what's going on, ya know you're on my prayer list. Little man has his hands full with you!
Andrew, sounds like you had a breakthrough with your adopted sister. Right ON! God works in mysterious ways, indeed! Hope you are feeling better physically. Hugs to Rosie and the family.
OD, it is great to hear from you!!!! I have been praying hard for you that you would have healing. Sounds like you are feeling better, and that is WONDERFUL.
GB, Whisper, I hope you are both doing well. Keep us posted.
Well.....I had my primary care doctor appt today. My total weight loss was.............zero. Yep. Nada, zippity zip, zilcherooni.But I have another factor which seems to be coming up that would explain that.
Ahem. Anyway, he didn't trip.
Good news....I am getting yoga stuff! My stepmother sent me some money for my birthday next month and this will help with my MS. Yes, it was ordered yesterday and should be here in about two weeks.
MegaYoga by Megan Garcia
http://www.amazon.com/gp/product/075...199105?ie=UTF8
Yoga Just My Size With Megan Garcia
http://www.amazon.com/gp/product/B00...199105?ie=UTF8
and of course the mat, strap, etc...in purple and lavender...now all I need is the purple mat bag....maybe for Christmas.....
Deluxe Yoga Kit at yogaaccessories.com
http://www.yogaaccessories.com/YogaKitDeluxe.asp
ShyFemmeKat
Subtle as a hand grenade"Sweet like candy to my soul, sweet you rock and sweet you roll.."
Topic: Silver Linings and the Clouds
I have been kicking this around for a few days and here it goes.
In addition to our normal sharing we do, I would like start having a topic once a week to get the brain cells cranking. My contribution this week:
Name some positive things that you have learned or experienced since you became ill/disabled.
SFK
Subtle as a hand grenade"Sweet like candy to my soul, sweet you rock and sweet you roll.."
I have been kicking this around for a few days and here it goes.
In addition to our normal sharing we do, I would like start having a topic once a week to get the brain cells cranking. My contribution this week:
Name some positive things that you have learned or experienced since you became ill/disabled.
SFK
Hey there SFK, good to hear from you. Yes, I know what you mean about the short sleep cycles because of pain. I'm doing that now too. I really need about 9 hours of solid or near solid sleep to feel decent, and I'm functioning on around 4-5 hours right now, which as you know just makes matters worse.
I like this idea. I try to find positive things about this illness, and well here's one that I've come up with. A hard learned lesson, but a lesson just the same.
I've learned that I defined who I was through my work/career. Since I no longer have that it's been a struggle redefining who I am and what I want in life. I never gave it much thought before, and you know what that's embarrassing as hell
~TD~
Climbing the Mountain
Shy,
Once again you have come up with such a great topic to talk about! My hat is off to you!
The positives of having a massive head injury...
1. I am more flexible in most situations;
2. I don't see the danger in risk taking;
3. I am lousy in school/education - so I have to find another way to earn a living vs. the typical way;
4. I am not a reader, but love books on tape;
5. I am more sensitive than most people. I have a 6th sense about people, places, things.
6. People take advantage of my lack of understanding, but God seems to set the situation straight.
7. My friends are close to me (heart and soul), and the same with them.
8. I define my disablities, not just the dr's. Some are the obvious, and the same. Some are very different. It is living in my shoes each and every day that makes me understand it, just that I cannot verbalize it. That is the hard part.
9. The computer has been a blessing. It has helped me to reach out to some who are invalids, and have no other way to reach out to ppl. It also allows me to learn at my own pace. I can play games, learn to learn things, etc. Just an all the way around blessing for me.
10. Defining my id as a FTM has been so much easier for me than most. I already knew it from an earlier age. I think it goes with having the 6th sense about things. The struggle has been for acceptance (family and employer).
Peace and love to all,
Andrew
"Be aware of how you take away hope from another human being." Oliver Wendall Holmes
M'kay, My Entry
Yeesh. For a long time I did not see ANY positives in my MS. "I was robbed!" Now I can....I have been kicking this around for a few days and here it goes.
In addition to our normal sharing we do, I would like start having a topic once a week to get the brain cells cranking. My contribution this week:
Name some positive things that you have learned or experienced since you became ill/disabled.
SFK
1) I have learned how to trust my loved ones more, as I have had to depend on them for various things such as rides, financial support, emotional support and the like. Very hard for someone who is used to being independent and doesn't trust anyone to handle HER business.
2) Hard lesson: Don't put off the things you think you might want to do. I have been guilty of this. Not any more!
3) It's okay to drop your guard sometimes. I think that ties in with trust, at least for me. I can cry, I can say, "I feel horrible", etc. I don't always have to put on a front and say, "I feel wonderful" when I am hurting, depressed, etc. I have learned to be more real. I don't always have to be perky.
4) As Andrew touched on, I have learned to be more creative and flexible. I can't always do things in exactly the same way I used to. It used to piss me off. Now I look for an alternate method.
5) As TopDadddy mentioned, sleep is crucial. I have to make this a priority now. I can't do it in a big chunk, so I usually take a nap in the evening and then sleep four of five hours in the morning. I am learning to respect my body's needs.
Anyway, that's a quick partial list. Hope all are doing well this morning.
ShyFemmeKat
Subtle as a hand grenade"Sweet like candy to my soul, sweet you rock and sweet you roll.."
Shy,
You hit on something that is a major issue for me - the trust factor. Coming from an abusive childhood, that is something that I had and still have to work on. I have some wonderful friends and a great adopted family that have shown me differently. Having a massive head injury has taken away what most take for granite each and every day. Independence. For example, being able to do bank statements, checkbooks, finances, etc. If I did that for one day I would be bankrupt no doubt. I have to depend on other folks to do that for me. And trust that they will not steal from me. It is a major trust issue.
I also believe in being honest and realistic when it comes to my emotions. Not everyone is able to understand what I verbalize what it is like to live in my shoes. It is very depressing to be trapped in my body unable to really communicate.
TopDadddy,
I too have to have alot of sleep. Close to 10 hours plus a nap every day. This allows me to function as most do. Again, this is just something that just is. I have to have it or else I am not able to really function. I also go to bed early. I cannot stay up all hours of the night. Just not possible for someone such as myself.
----------------------------------------------------------------------------------------------------------------------------------
Let's keep this topic going folks. I think there is so much more for us to learn from each other and share.
God bless you all.
Peace and love,
Andrew
"Be aware of how you take away hope from another human being." Oliver Wendall Holmes
hmmm What has Lupus taught me???
- that I need to trust myself. when I know there is something wrong wth my body. i am usually right
- that I am my own best advocate and i can speak up for myself
- that even in the face of family and friends that don't know exactly what i have or what it does... they don't care they just want to be here for me and anything i need
- that I have some damn good friends of the best quality
just a quick update, after 6 weeks of being home and 5 dr's later. I finally got one step filled out. okay so the dr doesn't want me back after filling out my forms for medical (kind of pissed her off that i knew what i had and she should have ordered the damn test 6 weeks ago) but either way the forms are filled out. Mom and DC still say i should report her.
today i get to go to a dr that is only accepting patients with lupus. I am hoping he is a decent dr and listens. I am hoping that if nothing else I will get a referral to a dermitologist to get my spots under control again. i know it means going back on steroids for a little while though which i am not impressed about, but hopefully it can get under control quick so i get get off the junk asap.
So off to get ready, keep your fingers crossed this dr is the one i can use for a family Dr
have a great day
BMW
Femme Dating Rule ONE: If they deny your existence... deny them your presence.
How to keep the Femme Mystic Alive Rule ONE: Shut the damn bathroom door.
Crossing all my fingers, toes, arms, legs, eyes, the whole works!!
I'm so hoping this Doc works out for you. Please keep us posted!?!?!?
~TD~
:
Name some positive things that you have learned or experienced since you became ill/disabled.
SFK
My injury and illness has taught me empathy well beyond the compassion I feel for others. The saying of "You never know until you walk in someone else's shoes" is so true for me.
This blessing has also taught me how to advocate for myself and my family. I understand now that for many medical professionals, it is really just a job, and for others it is a calling. I seek out those that hear the call.
It has also taught me how to slow down. I don't like to stop, and in my faith, I believe my heavenly father, has "broken" my legs because I refused to listen any other way. Interestingly enough, when things were much better, but I wasn't paying nearly as much attention to my faith is also the time that I dislocated my knee, and ended up with a reconstructed knee joint. I was in the processing of moving, looking for another job, and fighting with my ex about our son. Hmmm, prayer just didn't show up for me.....(**I in no way am saying that anyone "deserves" their injury or illness...this is only how it has happened with me...
My illness/injury has also taught me how to accept help. I am not an island, and even if I think I can do it all, I can't. There are some things that others do better than I, and with much less hassle. I can be that for someone else, and I need others to help me....
What a great way to start off the topic of the week. You are awesome as always Shy!! I look forward to meeting you soon!!
~Psalm 62: 5-7
Blue Moon - Thanks for sharing the pain you have gone through. I have prayed that this doc is the doc for you...Please let us know how it all goes....You have family here!
Top Daddy - I so understand about sleep. When I don't sleep enough, I get major migraines, and usually just plain sick. My immune system just doesn't handle burning the candle at both ends.
Andrew - TRUST!!! It can be a major obstacle for me as well. Illness has taught me that I have to look forward, with periodic glances behind. I know where I come from, but I want to focus on where I'm headed.
Daywalker - Glad to see you around again! We miss you and your lovely lady Flamezz
I hope all are drinking lots of water ( a major challenge for me....why, I'm not sure....just prefer caffeine and its no good!) Have a wonderful evening!!
~Psalm 62: 5-7
Crossing all my fingers, toes, arms, legs, eyes, the whole works!!
I'm so hoping this Doc works out for you. Please keep us posted!?!?!?
~TD~
((((((((((((((((((TD)))))))))))))))))))))) you can uncross now you gotta be cramped!.. read on to see how well your discomfort preztelness worked!
lionandlamb thank you so much for your prayers... read on so see how well they worked
Okay so I went to the new Dr reffered to me by the lupus society... OMG amazing dr!!! he actually listened!!! I talked with him and brought him up to date, talked about my spots and the lump in my throat. He's going to try me on a new cream that is a steroid and 2 different antibiotics for 2 weeks. If it's not better by then he is going to send me to a dermitologist and discontinue the steroid so I will only be on it for a very short time.
He is also sending me to get an ultrasound on my throat that happens on monday I also talked with him about being on medical welfare (a stop gap until the other two kick in) and applying for CPP and AISH (kind of like disability and state disability best way i can discribe it) he wanted to see my bloodwork before doing the forms so I signed the release to get them transfered over to him. He couldn't get me into a Rhumitologist any earlier than Oct but i am going to call and get myself on the cancellation list. Then I asked him if i could use him for my family dr because well he was cool and actually listened, he laughed and said yes... so i have a GP now!! yaaayyyy!!!!!
Doing a happy dance.... okay that's enough of that i am pooped but it was a productive day
Femme Dating Rule ONE: If they deny your existence... deny them your presence.
How to keep the Femme Mystic Alive Rule ONE: Shut the damn bathroom door.
BMW,
I am doing a happy boy dance for you too! I am hoping and praying that this dr will turn out to be the answer to your and our prayers. Please keep us posted on how things are turning around for you. I wish I could shake the dr's hand because I would.
LionandLamb,
It has never been hard for me to ask for help. If I don't ask for help, I will be stuck. Look at it that way. Just remember that you know your limitations and your boundaries, and you will be fine. As for the trust issue, well, that is always an ongoing thing for me. I think it always will be. I have to just have to have faith that someone will look beyond themself, and give me a hand. I have experienced folks who have ignored me (like when I had a seizure, and they actually walked over top of me while I was on the ground). So, I know what it is like to be ignored. Like I said, faith is not easy by a long shot, but I do have it. It is the size of a mustard seed.
God bless you all.
Peace and love,
Andrew
"Be aware of how you take away hope from another human being." Oliver Wendall Holmes
BMW!!!!
YAY! I'm so glad to hear the MD appointment went well! Awesome news! Now we just need a new doc for Andrew, and I think SirWolfalot, and we're on our way.....
I am back on prednisone....Wow, its throwing me for a loop this time around. I think it might be because I starting it, along with the new heart med, but geez, I am wiped out.
Take care of everyone....Catch ya' on the flip side!! (One of my son't favorite sayings!!)
~Psalm 62: 5-7
Yayyyyyyyyyyyyyyyyyy what great news
I'm sooooooo happy you found yerself a great Dr.
~TD~
Hello SSF!!
Welcome back...
The ride sounds great....It is nice when something comes along that makes our lives even a little bit easier....Are you up for "pimping the ride"? LOL
I have worked with client's who needed home health, and I actually used it after having meningitis. Just don't forget that you decide who comes in your home. If you aren't comfortable with someone, then no deal. I was fortunate that everyone I interacted with was great. Remember they work for you, and if they aren't working for you, then its time for them to go!!
I also went to a pain clinic. It was truly a blessing as I started working for an anesthesia department and met the doc who started the pain clinic. He saw me between cases in the OR and started me on the tricyclic antidepressants....I realized they were working when I had a buzz from the narcotic pain meds again. I went from being on oxycontin every day to tylenol with codeine. It made all the difference in my life....I pray you have the same experience!
I'm sorry to hear about the break up. It does sound like hy wasn't supportive the way you could use someone to be....Those relationships/friendships usually suck more out of us than they give back. You are an awesome femme with much to give the right person....I'm sure that lucky person is looking for you too!
Keep your chin up! We're glad you are back here!!
~Psalm 62: 5-7
Sweetstonefemme,
Welcome Back!
Personally, I think the new wheelchair sounds wonderful. It is such a blessing to have that. Life will be so much easier for you - and that is the best part of the whole deal! So Yeah for You!
As for someone stating that you or anyone of us "inventing" our illness...let them walk in our shoes for just an hour. Then let's see what happens. It would be interesting, but I bet the tables would be reversing mighty quick.
The aide is a great idea. My adopted mother, who died in December of Altzheimer's, had 3 aides. They rotated turns in her care, along with family members. It was just much easier that way for all of us. And like LionandLamb stated, it is your home, so you have to be the judge as to who you like vs dislike.
The pain clinic...I am going to the National Hand Center now. It is part of a pain clinic because most of the injuries are severe. Cases where people have lost fingers, part of their hands, as well as amputees. So, it is a blessing to have access to that sort of care. These folks do have specialize care, and know what to do. My hat is off to them.
I know that the right butch is out there for you. It is just a matter of time in finding them. I know that I have met a ton of queer femmes, butches, mtf's, and ftm's where I am being treated at. It is a small world we live in. Believe you me. Have faith. God answers all prayers. No matter how big, small, whatever. He does hear them.
God bless you. Keep posting. I am so glad to see you back here with us! I missed you!
Peace and love,
Andrew
"Be aware of how you take away hope from another human being." Oliver Wendall Holmes
I have been scrambling to get ready to go back to work and prepare for my son to come home, so I've missed a big hunk of this discussion. I went back and read a few days when I realized what a great question Shy posed. It's definitely up for me to look at what I've learned from my illnesses (and other misfortunes, but that's another thread).
I've learned that I defined who I was through my work/career. Since I no longer have that it's been a struggle redefining who I am and what I want in life. I never gave it much thought before, and you know what that's embarrassing as hell
I think I defined who I was by my relationships. When my last marriage ended in a way that felt like a negation of my womanhood ("I can only stay in relationship with you if I can have sex with other women") while I was dealing with feeling degendered by having had my breasts removed and experiencing abrupt chemo induced menopause, it felt like the me I knew up until that point died. I have since had breast reconstruction, gotten over no longer being fertile, and dated a couple of people, one seriously. However, I have not lived with a partner for seven years now. Turns out I can take my car in for maintenance and keep the electricity turned on! Who knew? It also turns out I have my own stuff to work on and it is toxic for me to be in the position of being the emotional interpreter for another adult.
More recently I developed Parkinson's and my cancer has metastisized, meaning it is supposedly incurable. *** I haven't given up hope of a cure for Parkinson's or for long term remission from my cancer, but my assumption is that the reality of my situation doesn't make me real marketable as a potential spouse. So I've been looking at who I am if I should remain unmarried or even celibate (I'm not into casual sex) for the rest of my life. I am coming to see myself as some kind of kinky nun who has been around the block and is able to really listen to other people in their dark times. Also, small things have become more important. A loaf of fresh bread or a perfect peach can make my day.
MY GAWD THIS IS OBNOXIOUS! To paraphrase lionandlamb, I may choose to believe I was sent an illness for a reason, but I would never say to anyone else that they "invented" their illnesses. I'm glad you got out.
May some of your blessings NOT come wrapped in clouds...
Peregrine
*** A side note: I am aware of not wanting to overstate my disability to a group of disabled people; I am not visibly ill unless I forget to take my Parkinson's meds, and many of you are having a much harder time than I am.
Welcome Back!
Good to see you! I was thinking about you the other day. Let me explain--I couldn't remember you were SweetStoneFemme, I remembered you as the Hamster Whisperer, LOL. I was reading Janet Evanovich's hilarious Stephanie Plum mystery, Twelve Sharp, and Stephanie has a hamster roommate named Rex who lives in a soup can inside his cage. No, really. ROFLMAO. See how convoluted my mind is? Yeesh!
I found a cool site with some neat wheelchair accessories for your new ride:
Sportaid--Colored wheelchairs tires, tricked out aluminum wheels and more
http://www.sportaid.com/?source=tlf
Also worth checking out:
Wheelchair Junkie--Mobility With Attitude
http://www.wheelchairjunkie.com/
Maybe we can get DAYWALKER to open a custom shop...we could call it "Pimp My 'Chair". Whatcha think?
Those gel seats are very comfy. My Dad had one and he said it made a lot of difference in the way he felt.
I'm going to be blunt for a minute. (Ha-like that never happens around here!) It sucketh mightily to be hym. Hy lost out. Someday hys turn will come. I loved this quote from your post: "No one would invent a future like this." You already know. Stress is not good for us. Good for you for taking care of you!
There IS someone there to help you up when you've just done the concrete curtsey.
but...
There was also someone there to SEE you perform said curtsey.
Hmmmmm....
I recommend baking that cake!Come hang out more often....
ShyFemmeKat
Subtle as a hand grenade"Sweet like candy to my soul, sweet you rock and sweet you roll.."
Wassup Chiquita B?
My injury and illness has taught me empathy well beyond the compassion I feel for others. The saying of "You never know until you walk in someone else's shoes" is so true for me.
This blessing has also taught me how to advocate for myself and my family. I understand now that for many medical professionals, it is really just a job, and for others it is a calling. I seek out those that hear the call.
It has also taught me how to slow down. I don't like to stop, and in my faith, I believe my heavenly father, has "broken" my legs because I refused to listen any other way. Interestingly enough, when things were much better, but I wasn't paying nearly as much attention to my faith is also the time that I dislocated my knee, and ended up with a reconstructed knee joint. I was in the processing of moving, looking for another job, and fighting with my ex about our son. Hmmm, prayer just didn't show up for me.....(**I in no way am saying that anyone "deserves" their injury or illness...this is only how it has happened with me...
My illness/injury has also taught me how to accept help. I am not an island, and even if I think I can do it all, I can't. There are some things that others do better than I, and with much less hassle. I can be that for someone else, and I need others to help me....
What a great way to start off the topic of the week. You are awesome as always Shy!! I look forward to meeting you soon!!
Hey Kellie!
Yeah, I hear you. Shoot, asking for help and accepting help...whoa. As an abused child grown to adulthood it is still sometimes very hard for me to ask for anything. As a child I learned the people who were supposed to care for me were unreliable. and most anything that was given came with strings attached. There is still that part of me that doubts anyone will be there for me on a consistent basis, I am the ONLY one who will ever be there for me consistently. I have really been walking "by faith, and not by sight" since I got sick. I have had to venture WAY out of my comfort zone. That is part of what I am working on in therapy as well as learning to deal with stress better.
Disclaimer: Objects in real time are shorter and fluffier than they appear online.
ShyFemmeKat
Looking forward to seeing you and little man!
Subtle as a hand grenade"Sweet like candy to my soul, sweet you rock and sweet you roll.."
Hi Everyone,
I just got back from my dr's visit. Well, the news is this...I am having arthroscopic surgery on my hand and wrist. It looks like I tore the tendons in my wrist and hand that need to be sewn up, moved cartilidge away from the back of some bone that needs to be removed and the bone needs to be shaved down some, and some other things that I really am not understanding too much of. The surgeon is very competitent, and I feel very good about his understanding of my injury. The MRI showed all the injuries, plus some. So, I feel good about today's visit. It was good news.
Peregrine Magic,
What you said is soo true. The little things are wonderful. A peach, the smell of a freshly mowed lawn, children giggling, watching people at the ballpark, and I could just go on and on. You are such an inspiration to me. Life is not easy. It isn't fair. Nothing about life is good. I believe that this is hell. It is hard and difficult how we pass through this life. Those who just breeze through life without any problems make me sick. Something is definitely wrong with them. They are definitely the odd ball out in my book.
Peace and love to all,
Andrew
"Be aware of how you take away hope from another human being." Oliver Wendall Holmes
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