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

[Shyfemmekat]

What you said here stuck with me, and it occurs to me it's what this thread is really about. That feeling that you're going crazy is right at the center of what it feels like to be pushed beyond your endurance and have to endure anyway. That's how it is for me, anyway. So many times I have thought, How can this be happening in my body? How can this be who I am now? This is not my life. Disease, disability, profound loss all do that to us, and yet we cope somehow, and sometimes even grow (kicking and screaming) from the experience. I have a feeling most if not all of us in this thread have been there. We hear you.

Peregrine

Yes, indeedy, I will answer our choir leader back with a big juicy AMEN! I'm so very glad we got to talk this week. I love you, P.

I would like my real life back. This has all been terribly educational, but I would like my old life back. Well, at least the part where I'm not sick. Please?

I've been having a lot of that these last few days as I watch my butch drag her exhausted self out of the bed at the last possible second, muttering, "I wish I didn't have to work two jobs." Why, oh why. Then of course I burst into tears because I'm like that, I cry so easily anymore. She kept telling me not to cry and I got stopped finally.

So, this morning (which in my new planning calendar I said was going to be "Nail Day"), I of course ripped off my nice long right thumbnail.

I said I was going to try to cuss less, so of course when I saw the nail swinging there by a tiny thread I said the F word.

I thought, okay, I would turn on the local Contemporary Christian station for some uplifting music. Now it has become talk radio. I hate talk radio.

Normally I would resort to chocolate but I finally dug out my Steven Curtis Chapman CD, Signs of Life , to help me raise my patience, and heard:

"Let us pray, let us pray, everywhere in every way
Every moment of the day, it is the right time
Let us pray without end and when we finish start again
Like breathing out and breathing in, let us pray..."


and thought I would check in here with my peoples.

Keep Outlaw and lionandlamb in your thoughts today. Outlaw's appt. is today and of course our dear Kellie is waiting to get test results back. Thank goodness we have each other!

Hugs,
ShyFemmeKat

[Shyfemmekat]

Happy New Year to everyone.

Holiday. Sorry to hear that you were ill. Glad to hear you are feeling better. People where I work have been extremely ill and my employer put out an alert to all it departments about an extreme flu among it workers and ask that we report any cases of the flu.

Take Care,
N.

How have you been?

SFK

[Shyfemmekat]

......to everyone. Wishing all a new year filled with better health, peace, love, laughter and joy. Myself? I have resolved to take a more positive outlook regarding my situation and be more proactive in my healthcare and wellbeing...I've sat back too long waiting for "x" to happen, its time to take control!

Best Wishes for the upcoming year!

Jules

Good to see you on here, I always get a lot from your posts.

SFK

[Tracey]

I have not been on this thread for a long time, but I am still subscribed and read all the updates and love it. If you remember (or go back a million pages! I have full blown Aids and have had it for many, many years. This past year it has really kicked my butt, went into the hospital in September, had med changes etc, and neuropathy from some other strange reasons. Tho my disability does not "look" physical, if you would look at me you would never know how sick I am, I do feel the same issues as many of you. The sadness, the depression, the wanting to have my "old" life back. The government crap with healthcare insurance, SSDI. I feel that I used to be a vibrant, outgoing, strong woman, now there are days that I just sit here and wait to die. Because I had such a late-stage diagnosis, all the new health finds that are coming available to those newly diagnosed don't really do much for me. I will never have a healthy Tcel count, can only hope for an undedectable viral load for as long as I can. I just read recently that they have given 24 years for a person to live with HIV/Aids. Well I have already done 18! Where does that put me?

So many things that have been written here lately have really affected me. SFK, you spoke of your love having to work two jobs and how this makes you sad. I have been with my Terry for 15 years, she is the love of my life, and has stood with me all this time, through thick and thin. But I do worry about her so much. She gets up and goes to a hard job everyday and here I am sitting at home feeling sorry for myself. I'm on anti-depressants and meds for bi-polar (I thought I was just moody! ), used to have a great job, but now only SSDI. I feel sometimes that I am not giving anything to the relationship anymore, but yet she still stays, still loves me. At the beginning of December, they thought she had a heart attack and went into the hospital for the week. I felt so guilty, how could I bring all this on her! It turned out to be a "glitch" in her heart. A glitch?? What?? I was definately in panic mode, yet she comforted me. There is something not right about this picture.

I guess the reason that I'm writing again is that I need to connect with other people. Others that have the same issues (and hopes) that I have. It's kind of like New Years resolutions, you have to start somewhere. I have to take responsibility for me being better, not everyone else worrying about me. I am NOTORIOUS for not taking my meds. Excuses like: not getting the scripts filled, forgot, don't feel like it today, etc so this morning I called the pharmacy, got all the scrips filled and will pick them up today. Called the doc, got my appt made (3 weeks late )! I am also going to go and purchase a calendar or print one out, as I also can not remember anything unless it is written down and right in front of my face. I read that there is a new finding in Aids patients that "their ability to remember, multi-task, etc is impared due to the virus." I couldn't have said that better!

Hope everyone has a great beginning to a (hopefully) wonderful New Year. My prayers are there with everyone who needs them today . . . . .

[Holliday]

hiya Holliday!

I wish you well on your endevour! I won't be joining the thread on the simple premise... it's not right when I am dropping weight because of my medical issues. I have a little family of lumps in my throat... makes it difficult to eat when you can't swallow.. if you can't eat much you loose weight...I have gone down 2-3 sizes in the past month, month and a half, so that's uhh roughly 20-30 lbs, 10 lbs for each size.

I decided to eat more chocolate for my new years resolution because well I love chocolate and I refuse to deny myself things that I love in the coming year. Indulgence is my theme!

BMW

Absolutely! I say eat chocolate as much as you possibly can--in milkshakes, soymilk, sucking candy, however!! Chocolate has always been my favorite "food," but it's also a migraine trigger. Boo hoo. Sometimes I throw caution to the wind and eat it anyway, though.

Best,
Holliday
xox

[Jules]

I have talked to my doctors and they brought up the possibility of going on disability. However, when I went to the Social Security site and filled out one of the little forms, it says I don't qualify because I'm still working (if you can call it that, I've missed more than I've worked in the last 5 months.) Does this mean I have to quit my job before i can apply?
I know it takes months to get your first check if approved, what exactly to they expect you to live on during that time? I'm thinking a woman I worked with worked until her's was approved, but I could be wrong.

I would appreciate any information/links/ideas/suggestions about this. Although its not something I really want to do, there seems to be a distinct possibility that I will never get well. I'm terrified of losing my job and only have 4 years until I retire, but don't know if I'll make it that long. So...I'm asking for advice and will be thankful for any.

Jules
feeling a little out of sorts over this turn of events

[lionandlamb]

Hey guys!
I wanted to share an update! The carcinoid test was a big, fat, NEGATIVE!!!! I am so grateful for the prayers and support. It has helped to have a place to vent. You all are like family. I have an appointment to be scoped both ways but the doc is wondering whether its a malabsorbtion issue, and the only way to tell is through biopsies. I'll let everyone know when I have more info.


Jules-
Here is a link I found about SSI.
http://www.ssa.gov/pubs/10095.html
http://www.yourtickettowork.com/ **this one has links for every state as each program is different**
http://www.disabilityblogger.blogspo...nd-ssi_24.html

Working as a casemanager, I can tell you that alot of people are denied the first time around for disability. It helps to have all your records, so you can ensure they are received on time. With my clients, provided they want the assistance, we also Appeal-APPEAL-APPEAL!!! After a while, they get tired of hearing from me and we win the claim.

I hope this helps. Let me know if I can help in any way!!

[Shyfemmekat]

Hey guys!
I wanted to share an update! The carcinoid test was a big, fat, NEGATIVE!!!! I am so grateful for the prayers and support. It has helped to have a place to vent. You all are like family. I have an appointment to be scoped both ways but the doc is wondering whether its a malabsorbtion issue, and the only way to tell is through biopsies. I'll let everyone know when I have more info.


Jules-
Here is a link I found about SSI.
http://www.ssa.gov/pubs/10095.html
http://www.yourtickettowork.com/ **this one has links for every state as each program is different**
http://www.disabilityblogger.blogspo...nd-ssi_24.html

Working as a casemanager, I can tell you that alot of people are denied the first time around for disability. It helps to have all your records, so you can ensure they are received on time. With my clients, provided they want the assistance, we also Appeal-APPEAL-APPEAL!!! After a while, they get tired of hearing from me and we win the claim.

I hope this helps. Let me know if I can help in any way!!

Oh I am so happy! I was bawling about it this weekend, just being nervous about my sweet friend.

Thank you, God! HUGGLES!

SFK

[Jules]

That is great new Lion!!! And thank you so much for the links. I read the requirements and what paperwork I need so I will be in the process of getting those together and making sure I have my doctors on my side. I'm sure this will be a long and arduous process which probably won't help my state of mind. I appreciate your information.

Jules

[Peregrine Magic]

Hey guys!
I wanted to share an update! The carcinoid test was a big, fat, NEGATIVE!!!!

lionandlamb, I am SO glad to hear this. Your original post sounded very scary. Party time!

Peregrine

[nvcap1]

Hello,

Lion Congrats on the good news. Do you know if a seizure disorder is an automatic win for disability? I do not have seizures that I am aware of but my last two EEGs read like I have a seizure disorder or will have on in the future. It could also mean I am just tired. For now I am saying I do not have a seizure disorder but I am concerned about the future.

Anyways. I wrote to a researcher about having mild frontal lobe damage which is a diagnosis that many people with the LD I have get. I asked her about techniques for improving my ability to initiate activity. She got back to me right away and said that although she was out of the office until Jan. 15,\she would love to help me and that new things were being discovered about treating people with mild frontal lobe dysfunction. I got teary when she responded. So few people do. Sporadically I write to researchers looking for tips on how to improve my functioning and they rarely respond. I am very excited.

N.

[Peregrine Magic]

I guess the reason that I'm writing again is that I need to connect with other people. Others that have the same issues (and hopes) that I have. It's kind of like New Years resolutions, you have to start somewhere. I have to take responsibility for me being better, not everyone else worrying about me. I am NOTORIOUS for not taking my meds. Excuses like: not getting the scripts filled, forgot, don't feel like it today, etc so this morning I called the pharmacy, got all the scrips filled and will pick them up today. Called the doc, got my appt made (3 weeks late )! I am also going to go and purchase a calendar or print one out, as I also can not remember anything unless it is written down and right in front of my face. I read that there is a new finding in Aids patients that "their ability to remember, multi-task, etc is impared due to the virus." I couldn't have said that better!

I don't know about AIDS meds, but I have to take my meds (cancer and Parkinson's) four times daily and used to be really bad at remembering. I'm much better at it now, thanks to three strategies:

1. I don't feed the cat, who is very loud and persistant, until I take my morning meds.
2. I set up my meds for the whole week in advance (also before I feed the cat-- who will actually bite my ankle if she gets pissed enough-- if I forgotten to set them up the night before).
3. I carry a timer which has multiple alarms to remind me to take my pills.

As for the organization thing, I do find that my little binder (suggested to me by a Virgo friend whose daughter has ADD) helps enormously. It has a calendar, a word processed list of contacts, a synopsis of my and my kid's medical histories (makes constantly filling out forms much easier), pockets for important papers, and of course a place for notes. Setting it up took time, but I have saved so much time being less discombobulated that it was totally worth it.

Peregrine
... who is glad that 2006 is over

[Tracey]

I don't feed the cat, who is very loud and persistant, until I take my morning meds.

I love that! We have five dogs, two of them are Maltese which have that annoying yippy bark. When I first started taking all the meds I had a timer that said (in a robotic voice) 'Time to take your meds!' It drove those two crazy!! Even if the timer was somewhere in the house and I couldn't hear it, I knew it was time because they were frantically running around the house looking for the sound! Unfortunately that timer is long gone . . .I think they finally found it!

[Tracey]

Hey good to see you againg! And the last nite's beverage is not ewww at all! I'll pick up anything that's at the side of the bed (well almost anything my pop, Terry's pop, anything that I can remember to take the morning meds with. The thing that screws me up is the diet restrictions with all the meds. I have one that I can't eat a half hour before or two hours after, one that must be taken with food, etc. etc. If I eat anything then I can't take the morning meds, so of course, I put them off, and then forget all about them You would think I could get it right after all this time. . . Sometimes I think it just about being a rebel, you know, "I don't need this, I'll do fine with out them".

A close friend of mine, last year, decided to go on a STI (structured treatment interuption - as it's known in the Aids world), but he didn't go through the doc, didn't do it structured, and died within 3 months of stopping the meds. His body just replicated the virus so fast that there was no way the doc could stop it. I think about that and him all the time, and I know that Terry does too.

Anyway, I'll have to try the Google Calender, and if I have any questions I'll be IM'ing you!!

Tracey

[Holliday]

Hello,

Lion Congrats on the good news. Do you know if a seizure disorder is an automatic win for disability? I do not have seizures that I am aware of but my last two EEGs read like I have a seizure disorder or will have on in the future. It could also mean I am just tired. For now I am saying I do not have a seizure disorder but I am concerned about the future.

Anyways. I wrote to a researcher about having mild frontal lobe damage which is a diagnosis that many people with the LD I have get. I asked her about techniques for improving my ability to initiate activity. She got back to me right away and said that although she was out of the office until Jan. 15,\she would love to help me and that new things were being discovered about treating people with mild frontal lobe dysfunction. I got teary when she responded. So few people do. Sporadically I write to researchers looking for tips on how to improve my functioning and they rarely respond. I am very excited.

N.

I'm glad you got a response, Nvcap1! It must feel very reassuring to know that someone is taking you seriously, and an expert, no less.

Best to all,
Holliday
xox

[micpfef]

I have talked to my doctors and they brought up the possibility of going on disability. However, when I went to the Social Security site and filled out one of the little forms, it says I don't qualify because I'm still working (if you can call it that, I've missed more than I've worked in the last 5 months.) Does this mean I have to quit my job before i can apply?
I know it takes months to get your first check if approved, what exactly to they expect you to live on during that time? I'm thinking a woman I worked with worked until her's was approved, but I could be wrong.

I would appreciate any information/links/ideas/suggestions about this. Although its not something I really want to do, there seems to be a distinct possibility that I will never get well. I'm terrified of losing my job and only have 4 years until I retire, but don't know if I'll make it that long. So...I'm asking for advice and will be thankful for any.

Jules
feeling a little out of sorts over this turn of events

Jules,

You will not qualify for Social Security Disability unless you are completely disabled. Does your workplace have long term disability in your benefits? That is usually the best place to start and then once you have the not working there you can then apply for Social Security.

Also there is the family medical leave stuff to taking into account with your workplace. If you are 4 years away from retirement also look into early retirement from them. Talk to your HR person or talk to someone outside of the company who is familar with the company policies. The other thing is to get all your benefit booklets and start reading all the fine print.

I have been through the short term to long term to Social Security disability with my mother just recently. It is an interesting process but it is a good thing if you have the policy at work. Even if you have short term at work you can go with that.

The family medical leave act is your friend too BTW. They cannot fire you if you are on a leave for medical reasons.

let me know if you need any other help or help in deciphering documents.

Take care,
Michele

[micpfef]

Tips for remembering to refill meds: I struggle still with this. There were a few things over the years that have helped though. The most recent has been using mail in for my meds where I can get 3 months at a time. They send you a reminder that you can put in your calendar or on a board someplace and it is fairly easy to take care of.

The other thing is that Walgreens has a great online service for meds. It will show you when you filled the last one and how many refills you have. You can set them up on automatic refill too. I think you can program reminders into it also.

Another recent tool for me has been my Google calendar. I found that I can have the calendar send a reminder note to either my cell phone or my email. So when I have an appointment I can be reminded of it. Granted remembering to put things into the calendar is the tricky part. But there is technically a way to do that via a text message but I am trying to remember to do it on my own for now. I spent a lot of time on the computer as it is and it is my lifeline at times.

I set my meds up a week ahead of time. I remember my morning meds when i get out of bed and (yes say ewwww here) but I will take them with the left over of my beverage from the night before (either diet soda or water). My night time meds are fairly easy to remember. I do not know what I would do if I had to take meds through the day. I know that would be a struggle for me. I do know that without my meds layed out that I cannot remember if I took them or not so that is the best way for me to remember.

Tracey good to see you posting Big Hugs to you.

Hugs to all.
Michele

[purechaos]

well i have managed to finally get something on for clothes other than lounge pants and t- shirts. But I must say I am uncomfortable, but its only for awhile then I can go back to comfortable. i see the doctor for another follow up on the 19th, i am still having numbness and aching exhausting pain. i am trying to hold myself together, i have been to visit a friend (well one that has been causing me heartache that is another story) but it has been good to get out. the depression is still there sometimes it gets pretty bad, yet i am hanging in there. thank you so much to everyone that i have heard from your support and kind words have meant the world to me. there are times when i feel as though i am still going crazy, but i figure i can't go where i already am. look forward to talking to you all.

[Peregrine Magic]

Anyways. I wrote to a researcher about having mild frontal lobe damage which is a diagnosis that many people with the LD I have get. I asked her about techniques for improving my ability to initiate activity. She got back to me right away and said that although she was out of the office until Jan. 15,\she would love to help me and that new things were being discovered about treating people with mild frontal lobe dysfunction. I got teary when she responded. So few people do. Sporadically I write to researchers looking for tips on how to improve my functioning and they rarely respond. I am very excited.
N.

How great that someone responded. I tried communicating with lots of doctors and researchers, in my case about whether there was a connection between my bone marrow transplant and my developing early onset Parkinson’s, and I know how frustrating it can be. I hope this researcher has some constructive advice for you.

Do you get Neurology Now? The last copy I received was focused on brain injury. If you don't get it and you're interested, here’s the URL that tells how to get a free subscription:

http://www.neurologynow.com/

there are times when i feel as though i am still going crazy, but i figure i can't go where i already am.

Well, it’s subtle, but that’s some improvement. I’m glad you’re feeling even a tiny bit better.

I remember my morning meds when i get out of bed and (yes say ewwww here) but I will take them with the left over of my beverage from the night before (either diet soda or water). My night time meds are fairly easy to remember. I do not know what I would do if I had to take meds through the day. I know that would be a struggle for me. I do know that without my meds layed out that I cannot remember if I took them or not so that is the best way for me to remember.

Hi, Michelle! I think I met you at the femme conference in SF this last summer. Anyway, yeah I take my morning pills before getting out of bed as well, and like you if I don’t use my special little containers (labeled by day and time) I won’t remember whether or not I’ve taken a particular dose. I am repeating this because it’s about coping-- the title of the thread-- and also because it’s important. My Aunt, who is both on graft vs. host drugs for a kidney transplant and has the family ADD, forgets her pills all of the time and it’s making a major impact on her health.

Blessings to all...
Peregrine

[micpfef]

Hey good to see you againg! And the last nite's beverage is not ewww at all! I'll pick up anything that's at the side of the bed (well almost anything my pop, Terry's pop, anything that I can remember to take the morning meds with. The thing that screws me up is the diet restrictions with all the meds. I have one that I can't eat a half hour before or two hours after, one that must be taken with food, etc. etc. If I eat anything then I can't take the morning meds, so of course, I put them off, and then forget all about them You would think I could get it right after all this time. . . Sometimes I think it just about being a rebel, you know, "I don't need this, I'll do fine with out them".

A close friend of mine, last year, decided to go on a STI (structured treatment interuption - as it's known in the Aids world), but he didn't go through the doc, didn't do it structured, and died within 3 months of stopping the meds. His body just replicated the virus so fast that there was no way the doc could stop it. I think about that and him all the time, and I know that Terry does too.

Anyway, I'll have to try the Google Calender, and if I have any questions I'll be IM'ing you!!

Tracey

Heya Tracey. I am so happy to see you posting in here. I know the struggle to cope on our own but it so sucks to be alone in the battle too. With the meds that you have to schedule eating with, can you eat something like a meal bar instead of a full meal? That way it is an easy bite and done and over with. I don't know if you prefer that or not but I know for me when I have to eat something it can be so difficult and I will forget everything else because I am pouting about having to eat when I really do not want to.

Also another thought is asking your doctor which is better: to eat something and still take the meds even if it affects the absorption or to go without it totally. Granted this is not an ideal thing to do all the time but a certain number of times in a month say if it were "approved" by the docs then you could give yourself some leeway and then work at reducing those times each month and get rewards that way. I also realize that some meds require no food for other reasons but sometimes finding out the whys of the meal restrictions can be helpful.

I know too for me there are times when I am so overwhelmed with battling the various "illnesses" that I just want to throw in the towel and say F* it all. There are 2 meds that I take that are technically supposed to be timed differently and I will probably have to work on that soon but the doctors have told me that it is fine as is but they would be more "effective" if done differently with my meals. One is my thyroid which should be taken an hour before meals and the other one is my stomach medication which the night time dose I think should be with dinner but I can't remember. I think it had something to do with needing to take it with food and a certain amount of time before I lay down for the night.

I weigh things out though with those meds. The balance of what I can do vs. what is ideal and try to work with what I can as I can do it.

Hi, Michelle! I think I met you at the femme conference in SF this last summer. Anyway, yeah I take my morning pills before getting out of bed as well, and like you if I don’t use my special little containers (labeled by day and time) I won’t remember whether or not I’ve taken a particular dose. I am repeating this because it’s about coping-- the title of the thread-- and also because it’s important. My Aunt, who is both on graft vs. host drugs for a kidney transplant and has the family ADD, forgets her pills all of the time and it’s making a major impact on her health.

Yes Ma'am we did meet there and it was great to meet you. I agree that restating things is always helpful here on the thread. I wonder sometimes how many times one of us has said something. I am in the Bay Area now but am unsure where you are in California (if you are in CA). I think we were in 2 workshops together and both were awesome.

Take care all and I hope everyone is well.

Hugs,
Michele

[koop]

Just checkin in Havent' been online much since I've been away from home for a couple of weeks.

It's interesting to see how far I've come health wise and also see how far I still have to go.

I'm more then ready to get home and back into a normal routing. For some reason that is the best thing for my body. Also to be somewhere where food isn't as much as an issue. Food tends to still be my biggest frustratation. My struggles with it often lead to either moodiness cause i'm just not eating or getting sick cause I ate something I shouldn't have.

I don't like the person I become at these times. I feel whiney and weak and like I'm no fun to be around. Just want fun, toppish me to come back and play!

Return home Tuesday and I'm giving myself about a week to recover.

[Shyfemmekat]

Hi everyone,

Wanted to check in and say hello. I had neuropsych testing done Tuesday and that was the most stressful and yet boring thing I have done since finals in college, LOL. Have to wait three weeks to get the results from my neurologist. I will be interested to hear what they say. I was so exhausted when I got home that I fell asleep early.

Today I had a recheck with my asthma doctor. He gave me a new medication to replace the Q-var called Asmanex and he said I am doing great! YAY!

I am going Friday to have a foot X-ray done. My primary care wants to check and see if I have a stress fracture in my left foot. I am having a lot of pain in it. I did lose four pounds and I am hiding from them. Hope they don't find me! The doctor let me have his office waiting room copy of this issue of People, check it out, it is so encouraging to see these folks who have lost SO much weight:

People -- Half Their Size
http://www.people.com/people/package...004741,00.html

That gets me motivated.

Hope you are all doing well!

ShyFemmeKat

[Peregrine Magic]

Hey, everyone. I'm sitting here at two in the morning waiting for Ativan to work. Good grief, teenagers can be horrible. I swear if I survive this one I can do anything.

But the good (and completely unrelated) news is that I get to sing a solo in my new choir. I hope it's fun. I also hope something louder than a powdery squeak comes out when I open my mouth to sing. (%$#%ing Parkinson's!) The director listened to my range, and thought it should be OK, though. And I'm going to ramp up my levadopa a little before the performance. Wish me luck!

I had neuropsych testing done Tuesday and that was the most stressful and yet boring thing I have done since finals in college, LOL.

I love this description. I wish I could try neuropsych testing. I know it costs a fortune, but it would be so interesting to find out what the heck is up with the way I process information.

Why are you doing it?

Blessings and mental clarity,
Peregrine

[Holliday]

Hey, everyone. I'm sitting here at two in the morning waiting for Ativan to work. Good grief, teenagers can be horrible. I swear if I survive this one I can do anything.

But the good (and completely unrelated) news is that I get to sing a solo in my new choir. I hope it's fun. I also hope something louder than a powdery squeak comes out when I open my mouth to sing. (%$#%ing Parkinson's!) The director listened to my range, and thought it should be OK, though. And I'm going to ramp up my levadopa a little before the performance. Wish me luck!


I love this description. I wish I could try neuropsych testing. I know it costs a fortune, but it would be so interesting to find out what the heck is up with the way I process information.

Why are you doing it?

Blessings and mental clarity,
Peregrine

Yay! Happy singing!!

[Peregrine Magic]

I used to never put any pictures in the galleries here because of the nature of my job, teaching kids. But that's the beauty of being on permanant disability: I no longer care if some homophobic parent finds me here. So if you want to see who you're talking to, check it out.

No cleavage, I'm sorry to say, but my kitty is pretty sexy.

Peregrine

[koop]

Not even sure how to adequately describe it.

But the past month I've all of a sudden gotten this random hot spot in my upper right thight. Always the same place but no clue as to what brings it on. Doesn't really hurt juses feels heat stabbing instead of a pain stabbing. Had forgotten about it but just had it happen a few minutes ago. Has anyone else ever experienced this? Have a clue as to what it is?

[Jules]

micpfef,
Thanks for the info. I work for the federal government and we do not have long/short term disability covered by the company. If I wanted that, I would have to find a provider on my own (like AFLAC).

Early Retirement could be an option, but really a huge cut in income. The spousal equivilant has a good job, however, I really don't want to put her in the position of partially taking care of me financially. She already has her hands full with me emotionally and physically.

I just got home after 10 days in the hospital because my Hickman catheter became infected...positive for staph, so I was pretty sick. I'm beginning to think I might just have to buckle up and retire early, but I really hate to.

[Peregrine Magic]

I just got home after 10 days in the hospital because my Hickman catheter became infected...positive for staph, so I was pretty sick. I'm beginning to think I might just have to buckle up and retire early, but I really hate to.

Hi, Jules. I didn’t say anything, but I worried when I read a ways back that you had a Hickman semi-long term . I had one myself as part of a bone marrow transplant procedure and it scared the hell out of me. I was never comfortable taking care of that little double hose implanted in my heart and dangling out of my body. It seemed to me that a nurse or doctor in a hospital ought to be cleaning and dressing the hole in my chest and flushing the tube with heparin, not me, a spacey half-poisoned cancer patient in a hotel room.

However, since you got staph, it sounds like you got infected in the hospital, not out on your own anyway. Goes to show.

I’m glad you’re OK now. Good luck deciding what to do about retirement.

Peregrine

[hellboi]

subscribing.

Also...I am a recent amputee (leg)...and..I'm wondering...are there any more amputees here? If so...can you tell me...did you experience (as I am experiencing now)...a feeling..like..you're just some ugly freakish monster that no one would want to look at? I can't stand the full length mirror in my room...I sometimes feel like it is just there to mock me...to further tear down my almost totally flat self esteem. I talk to my therapist about it..and..she tries to reassure me..but..ya know..she has two legs. I just don't feel like she is really hearing what I'm saying..what I'm feeling.

[Peregrine Magic]

Hi, hellboi. I don't know the answer to your question, but I guess I'll be the welcome committee until Shy gets here. Why was your leg amputated?

Peregrine

[micpfef]

micpfef,
Thanks for the info. I work for the federal government and we do not have long/short term disability covered by the company. If I wanted that, I would have to find a provider on my own (like AFLAC).

Early Retirement could be an option, but really a huge cut in income. The spousal equivilant has a good job, however, I really don't want to put her in the position of partially taking care of me financially. She already has her hands full with me emotionally and physically.

I just got home after 10 days in the hospital because my Hickman catheter became infected...positive for staph, so I was pretty sick. I'm beginning to think I might just have to buckle up and retire early, but I really hate to.

Jules,

Sorry to hear about the infection in the hickman. They are scary and I remember when Kim had hers taken out it was from an infection.

Social Security disability may be less than early retirement Jules. Check on www.ssa.gov and find out what Your disability benefits would be.

And one thing to remember about the significant other.... if your work is wearing you out more and making you more of a burden to her the financial burden is not a big deal. Besides with early retirement you could always give yourself a break for a spell and let your body mend and boost the spirits some and then find a part time job that makes you truly happy to supplement your income. Who knows your life might be tip top in no time without the stress of the job.

One thing I had to learn was without some pretty basic things I could not function on anything. Health is one of those big bottom level foundational things. Without it no matter how much you do to compensate you won't get anywhere and things will always be out of control.

Take care of you!!!!

Michele

[micpfef]

subscribing.

Also...I am a recent amputee (leg)...and..I'm wondering...are there any more amputees here? If so...can you tell me...did you experience (as I am experiencing now)...a feeling..like..you're just some ugly freakish monster that no one would want to look at? I can't stand the full length mirror in my room...I sometimes feel like it is just there to mock me...to further tear down my almost totally flat self esteem. I talk to my therapist about it..and..she tries to reassure me..but..ya know..she has two legs. I just don't feel like she is really hearing what I'm saying..what I'm feeling.

HI hellboi. Welcome to the my body sucks and now I feel like a freak thread Joking all. I am not an amputee but I can say that I have felt like a freak when I started to use a cane and also being a woman of size it is like a big red X on my head at times when it comes to being in the general public. The stares and scowls I get really can lead me to getting down about myself. Now on top of that I did get approved for a motorized wheelchair (because of ankle issues - many surgeries and such) so I get to be doing the public transit thing in a chair.

I can say that a loss of anyone's health is a grieving process. Anger, denial, grief, self-blame, acceptance, etc etc etc. I cannot relate to the loss of your leg but I can relate to the scars on my body and the amount of feelings I have about them and the fact that I get looked at for various other things and what it boils down to is what I feel about myself being the most important thing.

Until I realized as a woman of size that I was attractive even with my weight and until I realized that I am loveable even with a cane and now on to the next step of realizing I am loveable and not looked down on because I have to use a motorized wheelchair to get around, no one will find me attractive and I will be pushing everyone away with my own repulsion of myself and shame and fear and all those murky grief emotions that I will feel like everyone around me is repulsed by me.

I know my examples may be trite and I realize that I do have 2 legs and I cannot fully relate to what you are experiecing but I hear you above anything else and I am sorry for your pain. I hope it gets better soon and welcome to the thread!!!!!!!

Michele

[OutlawDaddy]

Hellboi, welcome to the thread where I think many folks can relate. I don't know anyone else with Crohn's Disease, but I can tell you we all have much in common. I have found really good folks on this thread and a ton of support, especially when I went into the hospital and didn't work for 6 weeks. I think the people here are so brave. It took me years to be able to tell folks I had a disability and I was back at work before I was able to tell folks I wasn't working, so I give you a lot of credit for sharing.

The process is hard and filled with grief and sometimes isolation. Healthy folks sometimes just don't get "it" ...but we do.

Welcome and keep sharing.

I know that when I was diagnosed, I was 19 and there were not many drugs out there to treat Crohn's. The most effective option at the time was Prednisone. I used heavy doses for 10 years and it ravaged my body, my skin and my bones. It changed the shape of my body and especially my face. I sometimes didn't/don't recognize myself. I am young, but suffer a lot of fatigue. I have a lot of complications from surgery that also place limitations on what I can and can't do. My body and my disease, don't match my personality and that's why folks say I am not my disease.
OD

[Femfare]

OD, I have Crohn's Disease...just wanted to let you know...and I agree, folks here are quite brave. I consider myself quite fortunate as compared to what you speak or and others I know that have CD. Have you ever tried Chinese Medicine or herbs? My best friend is an acupunturist and she gave me a formula that allowed me to go from RX to using them to relieve flare ups. I am not a big fan of pharmaceuticals and this formula did more than any drug I ever was given.

Hellboi, I feel for you. I will leave it at that. But I will add that I hope you get the support (professionally and otherwise) you need and so deserve.

[OutlawDaddy]

OD, I have Crohn's Disease...just wanted to let you know...and I agree, folks here are quite brave. I consider myself quite fortunate as compared to what you speak or and others I know that have CD. Have you ever tried Chinese Medicine or herbs? My best friend is an acupunturist and she gave me a formula that allowed me to go from RX to using them to relieve flare ups. I am not a big fan of pharmaceuticals and this formula did more than any drug I ever was given.

Hellboi, I feel for you. I will leave it at that. But I will add that I hope you get the support (professionally and otherwise) you need and so deserve.

Femfare...How did I miss that? Thanks for letting me know. I honestly feel quite lucky too. I am able to work and live a relatively normal life albeit I do make some concessions. I tried herbal remedies a long time ago, but found that the most effective thing I can do is control my diet, lately that has been carb heavy and I have gained quite a bit of weight as opposed to a long time of trying to keep weight on. I don't take many medications now, I do use Asacol and I just finished a round of Flagyl (YUMMY) and go back to the Dr. in 2 weeks. I was part of a the clinical studies for 6-MP and Remicade. Infusions of Remicade put me into remission. I don't have much active disease at all, the majority of the problems I have are as a result of a resection. I have scarring and narrowing at the anastamosis and poor absorption because I lost so much intestine. (that causes fatigue) I don't know how to describe it but have limited mobility/range on my right side/torso (doing things like playing basketball with my nephew at Chuck E Cheese, put me to bed for the day) Lifting my right arm and reaching or lifting really pulls on the surgery site, but I compensate with using my left side to lift or reach. Flares now cause some abdominal pain, but also joint pain and I have the consistent Crohn's related excema on my feet, I think it gets worse when I flare, but it is an ultimate conundrum. I think healthy people don't always understand what it's like to constantly have to think about walking through the world differently-abled especially for folks who have "Hidden Disabilities"

[Femfare]

Femfare...How did I miss that? Thanks for letting me know. I honestly feel quite lucky too. I am able to work and live a relatively normal life albeit I do make some concessions. I tried herbal remedies a long time ago, but found that the most effective thing I can do is control my diet, lately that has been carb heavy and I have gained quite a bit of weight as opposed to a long time of trying to keep weight on. I don't take many medications now, I do use Asacol and I just finished a round of Flagyl (YUMMY) and go back to the Dr. in 2 weeks. I was part of a the clinical studies for 6-MP and Remicade. Infusions of Remicade put me into remission. I don't have much active disease at all, the majority of the problems I have are as a result of a resection. I have scarring and narrowing at the anastamosis and poor absorption because I lost so much intestine. (that causes fatigue) I don't know how to describe it but have limited mobility/range on my right side/torso (doing things like playing basketball with my nephew at Chuck E Cheese, put me to bed for the day) Lifting my right arm and reaching or lifting really pulls on the surgery site, but I compensate with using my left side to lift or reach. Flares now cause some abdominal pain, but also joint pain and I have the consistent Crohn's related excema on my feet, I think it gets worse when I flare, but it is an ultimate conundrum. I think healthy people don't always understand what it's like to constantly have to think about walking through the world differently-abled especially for folks who have "Hidden Disabilities"

Oh wow. I would use the term disability maybe 8 years ago when I was at my worst. I wouldn't wish that on my worst enemy. I was incapacitated and was home bound for months. Though as I said, I consider myself fortunate as I have never been at that status again and I just have flare ups. Like you, I also have poor absorption and my diet has to be modified greatly. I do take special vitamins and supplements. My diet tends to be more protein and heavy fiber (vegs and fruits)....go figure

What surgery did you have? I didn't realize until I did alot of research that CD tends to be in certain ethnic groups and carried in families. I know my mother had it and I am Sephardic and North African descent. In other words: D-O-O-M-E-D

You take good care of yourself.

[Jules]

....early retirement. When I go back to work Tuesday I'll contact human resources and see what all it entails. I'd much rather do that then go through stress of applying for disability. Thanks Mic for the info and caring!

Wellcome hellboi, I hope things are going better for you.

I did probably contract the staph infection while in the hospital. They couldn't figure out, that after giving me a lot of IV antibiotics, why my fever wouldn't go down. It got up to 104 at one point but kind of hoovered around 103. They finally figured out that a small percentage of patients contract fevers due to this particular antibiotic; vancomyocin. So, they changed the antibiotic to Cipro and it helped lower my temp. I made a deal with the doctors that if I had two blood cultures come back negative, but still ran a low grade temp, that I could come home, so finally with a temp of 101, but two negative blood cultures, they let me come home.

I give myself my own IV antibiotic through my Hickman, so its not really that hard to do, but another hassle unto itself. But like the rest of the stuff, I'll manage through it.

Hope everyone had a great weekend, fortunatly I'm off tomorrow, so it gives me one more day to recoup before going back to work.

Jules

[Shyfemmekat]

subscribing.

Also...I am a recent amputee (leg)...and..I'm wondering...are there any more amputees here? If so...can you tell me...did you experience (as I am experiencing now)...a feeling..like..you're just some ugly freakish monster that no one would want to look at? I can't stand the full length mirror in my room...I sometimes feel like it is just there to mock me...to further tear down my almost totally flat self esteem. I talk to my therapist about it..and..she tries to reassure me..but..ya know..she has two legs. I just don't feel like she is really hearing what I'm saying..what I'm feeling.

Hey hellboi,

Welcome! Glad to have you here. I think there IS someone else on here who is a partial amputee but I haven't seen them post for a bit. Maybe they will come back.

I did find this in my on-line poking around:

Amputee Coalition of America
http://www.amputee-coalition.org/

Amputee Web Site
http://www.amputee-online.com/ampute...ort_sites.html

My dad had a partial foot amputation done due to diabetes-related gangrene. I did his post-surgical care so I saw him go through a lot with phantom pain, reduced ability to walk, etc. He tried to joke around a lot and say things like, "Hang Seven!" I know, though, that it had to have been hard on him, even with all the other issues like his bad heart and the stroke.

Just know that there are people here who care, and maybe check out those links. Please do post again soon.

SFK

[Shyfemmekat]

Gently hacking away...(LOL, you know I'm teasing, OD)

I think healthy people don't always understand what it's like to constantly have to think about walking through the world differently-abled especially for folks who have "Hidden Disabilities"

Thank you for saying this. Very, very true. All that glitters and so forth.

SFK

[curley]

hello room
I am working my way through these posts,, and will post my Dx and stuff later. I did want to give some imput however ,this may be if intrest to those of you with MS/lupus /autoimmune,or neuro.igical problems,
http://www.hughes-syndrome.org/symptoms.htm
Breifly I have had a Dx of Ms, which turned out to be incorrect, then Lupus with CNS invovlement, I have a new Specialist who is treating me for this and have only been on the medication for about 6 weeks, I am hopefull as since I have started I have noticed:, My dizzness has gone (it was getting a bit much, feeling like i was drunk, when i was'nt, having to bath instead of showering etc) and and my brain fog and memory seem to be doing better
I am feeling hopeful and have been doing lots of research about this, and thought I would share this information with people who may find it helpful
Please excuse me if this topic has already been posted or if this is not the appropiatr thread
Hope you are all enjoying your day