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

[Gossamer]

Gossamer,

I had similar problems at my college. There was no system in place (or even acknowledgement) for making sure I could aptly express what I needed. It seemed kind of strange that an office for Disability Services could neglect the fact that self-advocacy can be really, really difficult BECAUSE of a person's disability. Argh. I actually dropped out in large part because of this.

But on a happier note...don't take your "anchor" for granted!! You didn't force her into a relationship, so that's that.

Holliday
xox

Very well said. I didn't expect it to be that way, I went into it thinking that they were trained to deal with people like me. Ha! Well, live and learn. I don't really know what what your experience with your college was like, but I'd like to. One thing that really threw me off about the Disability Services at my university is that although they listed many accommodations, they didn't actually *have* them at the time. Like, they didn't have a software program that I could use to take my math tests on, so when I requested a scribe instead (which was a concession on my part, big time) I found out they didn't have anyone. Ended up doing trig using microsoft word equation editor, what a nightmare.

Oh, I'd never take my dear for granted. Half expect her to be gone each time I wake up hehe

[DAYWALKER]

Um, okay...I just had to post this. I am all ready to zip out the door to my doctor's appointment. My mane of curly frizzy hair actually looks cute and everything. Phone rings and I grab it, and it's the doctor's office. Oh, wow, I guess they are going to cancel now, damn...

Guess what? The appointment wasn't until tomorrow.

Eeeek. I had to post that for those of us who have memory issues. I feel like a total dork now.

SFK

Lawd Shy...lmaooooooo...!

I can so totally relate to this. A few weeks ago, I couldn't find my glasses.
I was hella thirsty when I got home, set a buncha stuff down...grabbed the gallon of milk outta the fridge and began to chug. Next morning, couldn't find my glasses. Guess what, they were hella cold when I put them on...after I found them in the Fridge!

I would like to thank everyone who is sending healing energy my way.

It means the world to M'Lady & I...
and Shy, as you know...your phone call was very needed...

so thank you everyone!

[Shyfemmekat]

Hello Dear Peoples,

I got an email today asking me to fly out to Washington, D.C., again next Thursday for a very important meeting for Partnership for Prescription Assistance.

As many of you know the last time I flew I had to change planes and my leg swelled up dramatically so that I ended up having to cancel my plans with Montel and all.

This could be a huge occasion, but I need to really think about it first, since it was so hard on me last time.

Keep me in your thoughts on this, I have to make a decision tomorrow.

SFK

[DAYWALKER]

Hello Dear Peoples,

I got an email today asking me to fly out to Washington, D.C., again next Thursday for a very important meeting for Partnership for Prescription Assistance.

As many of you know the last time I flew I had to change planes and my leg swelled up dramatically so that I ended up having to cancel my plans with Montel and all.

This could be a huge occasion, but I need to really think about it first, since it was so hard on me last time.

Keep me in your thoughts on this, I have to make a decision tomorrow.

SFK

That is awesome Shy.

You know, lol...this will be an excellent opportunity to hand deliver a certain catalyst for change to our Mr. Montel...lol, that I am nearly finished with, so I of course am going to encourage you to GOOOOOOOOoooooooooooooooo...lol!

[Shyfemmekat]

Lawd Shy...lmaooooooo...!

I can so totally relate to this. A few weeks ago, I couldn't find my glasses.
I was hella thirsty when I got home, set a buncha stuff down...grabbed the gallon of milk outta the fridge and began to chug. Next morning, couldn't find my glasses. Guess what, they were hella cold when I put them on...after I found them in the Fridge!

I would like to thank everyone who is sending healing energy my way.

It means the world to M'Lady & I...
and Shy, as you know...your phone call was very needed...

so thank you everyone!

I tell you, I felt so stupid when I did that, but I did look cute when my sweetie got home.

I have done the same thing with putting the peanut butter in the fridge a few times myself, then wondered how the heck it got there. Well, obviously the peanut butter elf didn't do it.

I have been remembering you and your sweetheart in prayer, DAYWALKER. My cell phone battery is down and I confess I did burn up a very large chunk of my 300 minutes catching up with the lovely and spiritually uplifting pagan chick on this thread. However if you want to holler at me tonight in about 3 hours I'd love to hear from y'all.

Gossamer, it is SO good to see you again!!!

SFK

[Shyfemmekat]

That is awesome Shy.

You know, lol...this will be an excellent opportunity to hand deliver a certain catalyst for change to our Mr. Montel...lol, that I am nearly finished with, so I of course am going to encourage you to GOOOOOOOOoooooooooooooooo...lol!

Lordy, I wish it was with Montel. We had so much fun chatting last year. What a fabulous guy.

This is actually a meeting of the Board, and I was specifically asked for by someone. Part of the meeting will be actually giving "testimony" as it were about our experiences as recipients.

I'm not nervous about the meeting, I just hope my poor body desn't crap out on me, you know?

SFK

[Shyfemmekat]

Very well said. I didn't expect it to be that way, I went into it thinking that they were trained to deal with people like me. Ha! Well, live and learn. I don't really know what what your experience with your college was like, but I'd like to. One thing that really threw me off about the Disability Services at my university is that although they listed many accommodations, they didn't actually *have* them at the time. Like, they didn't have a software program that I could use to take my math tests on, so when I requested a scribe instead (which was a concession on my part, big time) I found out they didn't have anyone. Ended up doing trig using microsoft word equation editor, what a nightmare.

Oh, I'd never take my dear for granted. Half expect her to be gone each time I wake up hehe

OMG you can do trig? Wow. That is amazing to me. Math is uh, not a strong point for me.

I actually told a geometry teacher once, when we were doing proofs, that I thought that was a waste of time. My irate teacher asked why, and I told him, "You know, look at how many people have done these proofs. They have always gotten it to work out so far, and they are much better at math then I am. I'm okay with trusting them."

Strangely the teacher was very cooperative when I asked to transfer out of his class.

SFK

[Gossamer]

Well, hello! I am glad you decided to share with us. Welcome to you!

I was not familiar with Ehlers-Danlos, so I had to look it up. Thank you for educating me. For everyone else, here is a link:

What is EDS?
http://www.ednf.org/abouteds/index.p...d=12&Itemid=30

It sounds like you have been through some rough times. Thank you for your trust in us to share some really deep things. I have only experienced the kind of "invisibility" you describe one time, when I was hospitalized the last time for IV steroids. I was so freaking angry when this tech talked about me like I wasn't even there. (I am tensing up just thinking about it). I thought, "@3$ch, I am not a piece of furniture!" To dehumanize someone by speaking around them or over them makes me so angry. Femmie Snarl! Honestly, I would be afraid for anyone who would pat me on the head, either literally or verbally in a demeaning way. *smiling sweetly, picks up paperweight...* Does it ever occur to some people that reason we may be a wee bit testy is not because we are *insert illness/condition here* but because they are acting like asses? "Things that make you go hmmmmmmmm..."

I am glad you have Brooke. To have someone who loves us regardless of how twisted, wobbly, etc., we are is nourishing to the soul. Sounds like perhaps others in your life are suspicious because she doesn't follow their script. Ha, tough noogies. Love is such a healer and I try to strew it around as I am able, I think everyone does here. Here, now, you've just gotten a bit on you! Pass it on...

I can't believe a school could dismiss you! That is an outrage! Have you considered an online school to complete your education? Something to think about, maybe. Obviously you are quite intelligent. I don't where you hail from, but I know here in the US there are lots of distance learning options.

Gah! Have to go find some clothes and get ready for my appointment. Please do come back and post more, it is good to meet you and I look forward to hearing more about you and getting to know you.

SFK

Thank you for the welcome ^_^ EDNF is a great organization, just wanna say, appreciate you linking their site.

For the last year and some, I've completely retreated into my coccoon and let everything around me flounder. I can't do this anymore, I'd rather be with people, even if that makes me vulnerable. So posting here = my first steps oustide my comfort zone. Ugh, I'm sorry to hear about your experience with the hospitalization. It seems regardless of how often it happens or not, it still stings. I've found one of the best ways to counter people talking about ya as if you weren't there is to go with it, start talking about yourself in third person. Sometimes brings 'em up short.

You've got that right, love does wondeors for a person. Brooke's learned everything she could about my conditions, we work together to find better therapies and to make our own accommodations She pushed me into interacting with more of the autistic community, which I've been resistant to. I have two brothers with autism, and we pretty much grew up barely refraining from killing each other. It's so much different now, it feels much less alienating. Don't care anymore when people in my life try to hurt me by throwing around the "retard" card. It's lost its shame. So yay.

I live in Ohio. I'm working on finding a viable institution for online study right now. Want to get back in the game. Learning didn't stop when I got kicked out of school, but it sure would be nice to have a degree.

And in other news, yesterday I learned a valuable lesson about walking without my aids. Namely, "Don't."

I really love this thread, it's so nice to hear everyone's stories. So thank you all for being so cool and sharing.

P.S. I apologize for typos and such, my computer doesn't wanna cooperate with my voice software.

[koop]

Hi, everybody. I'm back from my trips to my Sister-in-law's memorial service and to a week at cancer camp. I've obviously got some catching up to do.

Shy (and R), I'm so sorry about Cricket.

I've got the blues for no particular reason or maybe it's a whole lot of reasons. I'm tired of my people dying before (what I think is) their time, I'm tired of having cancer, and i'm tired of being single. Life just feels like such a struggle some times.



Peregrine

(((((((((((((((((((((((((peregrine))))))))))))))))))))))

I hope the sun is shining in your life today!

[koop]

Um, okay...I just had to post this. I am all ready to zip out the door to my doctor's appointment. My mane of curly frizzy hair actually looks cute and everything. Phone rings and I grab it, and it's the doctor's office. Oh, wow, I guess they are going to cancel now, damn...

Guess what? The appointment wasn't until tomorrow.

Eeeek. I had to post that for those of us who have memory issues. I feel like a total dork now.

SFK

Back when i was in college and living at home, I had a follow up appointment with my orthopedic surgeon. My mom, my dad, I think my fiancee, and I ALL read the card on the fridge saying I had an appointment on the same day. I get to the appointment and the receptionist asked me what I was doing there since my appointment wasn't til next week. The office was PACKED. She said don't worry we'll fit you in. It was a 30 min to 45 minute drive each way.

I had been in bad shape for quite awhile. It would take me like 20 to 30 minutes to get from one class to another. When it should have only taken 5. I use to long to jump on the back of one the electric wheelchairs that whizzed by.

Well for some reason they took x-rays from a different angle and realized my fusion had completely dissolved. By the time I left I had my surgery scheduled before my original appointment was to have taken place.

When I got home I looked at the card again and the Orhopedic office was correct the date on the card was for in a week. However my wedding was scheduled at the end of the month. So because of the mix up we were able to get it in while I was on my dad's insurance for sure. So after 10 days in the hospital i had 1 week to rest up for my wedding.

This instant always reminds me that there is a higher power and there are no coincidences

[koop]

Just a brief check in.

I'm doing awesome. I had another flare up of candida and all the weakened immune stuff that went with it. So after being sick for a couple months it seems everything is back on track.

It never ceases to amaze me the night and day experience I have betwen a flare-up and when things are going good.

The candida is tricky in the sense it slowly builds up and all of a sudden I notice i"m in this swamp of symptoms and wondering how the hell I got there. I guess the good thing about each flare up is learning to be better at recognizing it and being more willing to go to my dr. right away despite the cost.

My brain feels light as a feather and my body has been amazing. Last week at physical therapy I was able to do the challenging stuff I was doing a couple months ago. I didn't even feel very fatigued one day and the therapist worked me hard.

This week I've started painting my place. My body is tired and sore but it's the good fatigue and soreness. I've been amaze on how little nerve sensations I've had. I truly believe alot of my muscular problems for quite awhile have been the candida.

Now the only thing to do is try to figure out what is making my skin break out. It will be almost gone one day then i'm around something and my body feels like braille again.

So with a big on my I'm sending all of you well wishes!

[Peregrine Magic]

My cell phone battery is down and I confess I did burn up a very large chunk of my 300 minutes catching up with the lovely and spiritually uplifting pagan chick on this thread.

<Aawww... I think she means me in spite of her having to scrape me off the floor.>

Thanks for calling, Honey. It's always good hear your voice.

Peregrine

[Peregrine Magic]

(((((((((((((((((((((((((peregrine))))))))))))))))))))))

I hope the sun is shining in your life today!

Not yet. But I have decided to let go of my deeply-spiritual-and-can-handle-anything-through-prayer-and-contemplation self image and take me some antidepressants. The sun should be rising in a couple of weeks according to the shrink. I just hope my Apostles don't find out...

Peregrine

[Shyfemmekat]

<Aawww... I think she means me in spite of her having to scrape me off the floor.>

Thanks for calling, Honey. It's always good hear your voice.

Peregrine

It was more like we sat down on the floor together for a bit to contemplate and then helped each other back up.

I wish I had unlimited long distance, I'd be blowing it up.

Love you,
SFK

[lionandlamb]

Hellboi, I am right there with you!!! The irish part of me could do nothing less that an all out party!!!!

LOL...my demoliton derby darling is far too overworked...but is going to take a few days off...and allow me to pamper her for a change. *she deserves it just as much as she needs it.*
we have candles lit for Day and hys lady.

Peregrine...the trouble wit funerals...is that they aren't really for our dear departed ones..they are for us to memorialize them..but..unfortunately..they make us think waaay too much about our own mortality.

When I finally die *I'm thinkin/hopin that will be a far piece off*...I don't want a memorial service...I want a good old fashioned Irish wake...the kind where everyone parties down...and consumes at least one intoxicating beverage for me...for each one they consume for themselves...I want it to be a big ol' cookout party!!!! *and I'm hopin everyone gets so crocked..they can't even find their car..let alone drive. *I'm thinkin they need to rent a beach house for this hoe down.*
I don't want everyone to get all depressed..I want 'em to celebrate my life..not mourn my death.
I'm bettin everyon's loved ones want that.
I'm betting yours do, as well.

Ya know....for every person dear to you who has passed on..you have an angel looking down at you...who's heart is likely very heavy...seeing you feel so down.

That might not help..but..if ya think about it in that way...then mebe ...just mebe....the emotional pain will begin to ease. I'll be prayin it will, for you.

[lionandlamb]

Hey guys and gals.....

It is so awesome to see more people coming together here. Jules-WAY TO GO!! I'm glad it is getting better for you!

Shy-Sorry to hear of your furrbaby. I'm praying for peace for you, my gracious friend.

The update in this corner is pure frustration. All the labs we did from December, 2006 to now don't count because the machines can't be calibrated to get the needed results. So I have the option of taking all the little test and taking them to the one lab that can run carcinoid. But for the moment, I am just taking a break. I see a GYN surgeon later this month and am hoping he will justify scoping me again so we can see if something is wrong. I'm just tired of feeling tired and angry. This will end soon.....I has to.

[Shyfemmekat]

Hey guys and gals.....

It is so awesome to see more people coming together here. Jules-WAY TO GO!! I'm glad it is getting better for you!

Shy-Sorry to hear of your furrbaby. I'm praying for peace for you, my gracious friend.

The update in this corner is pure frustration. All the labs we did from December, 2006 to now don't count because the machines can't be calibrated to get the needed results. So I have the option of taking all the little test and taking them to the one lab that can run carcinoid. But for the moment, I am just taking a break. I see a GYN surgeon later this month and am hoping he will justify scoping me again so we can see if something is wrong. I'm just tired of feeling tired and angry. This will end soon.....I has to.

I will add that to my prayers, that they get this figured out quickly. Watch your mail.

Tests can be so frustrating. I still do not have my neuropsych test yet. Aaaaargh!

I hear you, sweetie. I have been spending a lot of time in CrabbyLand. Trying to get out of it is tough. Everything has been making me cranky and I am having to work double time to stay up. Crying a lot. Fell asleep this afternoon praying for people, figured that would be a positive way of dealing with it, pray when I feel frustrated. That helped me quite a bit.

Claiming today Isaiah 40:31.

I sure need the help walking right now with this dumb foot. Had to have another cortisone shot this morning. Last one, next time I guess he wants to kill the nerve. Anyone ever had treatment for a neuroma?

SFK

[Holliday]

Very well said. I didn't expect it to be that way, I went into it thinking that they were trained to deal with people like me. Ha! Well, live and learn. I don't really know what what your experience with your college was like, but I'd like to. One thing that really threw me off about the Disability Services at my university is that although they listed many accommodations, they didn't actually *have* them at the time. Like, they didn't have a software program that I could use to take my math tests on, so when I requested a scribe instead (which was a concession on my part, big time) I found out they didn't have anyone. Ended up doing trig using microsoft word equation editor, what a nightmare.

Oh, I'd never take my dear for granted. Half expect her to be gone each time I wake up hehe

Gossamer--I didn't need a terrible lot of accomodations when I was in school. I had pretty bad concentration/focusing problems because of an anti-seizure med I was taking, plus I got migraines a lot and had to miss classes because of them. I was also suffering from mucho depression, even though I was already medicated. Mostly what I needed was extra time, and the opportunity to take exams in a super-quiet setting. I ran into trouble because I couldn't TELL what I needed, nevermind express it to them, and my consumer manager (fancy word for D.S. liason) didn't know or didn't care to follow up and make sure I was doing okay--which I wasn't, of course. Now I have all these incompletes that just depress me even more, so I'm taking time off until I know for sure that I am in a mental place where I can be more self-advocating.

Phew...that was a mouthful! Oh, and I meant to write this before--I love your "nerd-femme" description.

Holliday
xox

[Jules]

.....its quiet in here for a bit then the flood gates open and everyone's here!! I was so excited to see all the posts and catch up on how everyone is doing, and glad for the most part as a group we're not doing too bad today.

Remember I said we could say we know someone famous?? (that would be SFK), well I was incorrect in assuming she's only famous on . She's now going to "the Hill" in behalf of lotsa folks....all I can say is "wow" I'm so impressed by you and your advocacy and support while dealing with your own health issues. I am so glad to have found this thread and honored that you consider me a friend, SFK. I'm equally honored to consider all of you as friends and advocates...we take care of each other.

OK, today I woke up and I actually had energy! This is the first day that I've gotten up with even a hint of energy. So, ready to face my day. I unhooked my bag o food, showered, dressed and Diana and I toodled off to the doctor. This doctor is the one who's in charge of my nutrition and tube feedings. I HAVE GAINED 10 POUNDS!!! Itsa miracle....so after the great doctor's appt, the SE and I stopped for lunch and then came home...and another miracle...I wasn't wiped out from the excursion...I still had a bit of energy left, so I stayed dressed until evening.

I hope everyone's day was as "energized" as mine.

Jules

Oh, a bit of not so good news (that's why its at the bottom), we're afraid the G-tube is infected. It has a small amount of ugly drainage and the area around the tube is tender and slightly inflamed. The home health care nurse will be dropping by tomorrow to check it out.

[Shyfemmekat]

.....its quiet in here for a bit then the flood gates open and everyone's here!! I was so excited to see all the posts and catch up on how everyone is doing, and glad for the most part as a group we're not doing too bad today.

Remember I said we could say we know someone famous?? (that would be SFK), well I was incorrect in assuming she's only famous on . She's now going to "the Hill" in behalf of lotsa folks....all I can say is "wow" I'm so impressed by you and your advocacy and support while dealing with your own health issues. I am so glad to have found this thread and honored that you consider me a friend, SFK. I'm equally honored to consider all of you as friends and advocates...we take care of each other.

OK, today I woke up and I actually had energy! This is the first day that I've gotten up with even a hint of energy. So, ready to face my day. I unhooked my bag o food, showered, dressed and Diana and I toodled off to the doctor. This doctor is the one who's in charge of my nutrition and tube feedings. I HAVE GAINED 10 POUNDS!!! Itsa miracle....so after the great doctor's appt, the SE and I stopped for lunch and then came home...and another miracle...I wasn't wiped out from the excursion...I still had a bit of energy left, so I stayed dressed until evening.

I hope everyone's day was as "energized" as mine.

Jules

Oh, a bit of not so good news (that's why its at the bottom), we're afraid the G-tube is infected. It has a small amount of ugly drainage and the area around the tube is tender and slightly inflamed. The home health care nurse will be dropping by tomorrow to check it out.

Goofball...said affectionately.

Actually this is not a legislative type people thing. This is more CEO's of drug companies type thing as I understand it. I think they had tentatively planned a "Hill" type event for April but that has been postponed for now. This is a drive-by thing, really. Fly out in AM, dinner meet and greet that evening, formal meeting the next morning, fly out that afternoon. I like those. Less tiring.

Rhon is encouraging me to go since it's a short event. I got this stuck in my head when I was praying about it today:

"When someone has been given much, much will be required in return; and when someone has been entrusted with much, even more will be required."
--Luke 12:48 NLT

Goodness knows they have given me much. I would never be able to afford the $27,000 in medication without help. Who could, really? I am also out to them and they specifically asked for me, so I feel a duty to go rep for the peeps. I'll need to rest up for a couple days ahead of time, so I'll be catching up housework like mad the rest of the week.

I am so glad you are gaining weight. Here, have some of mine. No really, take some, I'll never miss it.

I'll be praying for you concerning the tube...

SFK

[sapho32]

Hey all. I'm still working my way through the posts (very slowly, it feels like).

I'm kinda sad tonight because I've had a rift with two dear friends of mine. We all went to Vegas a few weeks ago and I was an ass. My behavior was socially inappropriate, very rare for me (an innately social creature, I am). I was triggered and went into crazy PTSD mode. I'm still trying to figure out what happened with me.

for the first time in my life, I'm actually trying to deal with my disease (I f-ing hate that word), and it's bringing up all kinds of long-forgotten memories. Not very pleasant ones, I must admit.

I miss my friends, and I'm sad, and I'm traumatized. And if one more person calls me "diabetic" this week I'm going to...get mad?...have an episode?...actually, I'll probably cry.

[Shyfemmekat]

Hey all. I'm still working my way through the posts (very slowly, it feels like).

I'm kinda sad tonight because I've had a rift with two dear friends of mine. We all went to Vegas a few weeks ago and I was an ass. My behavior was socially inappropriate, very rare for me (an innately social creature, I am). I was triggered and went into crazy PTSD mode. I'm still trying to figure out what happened with me.

for the first time in my life, I'm actually trying to deal with my disease (I f-ing hate that word), and it's bringing up all kinds of long-forgotten memories. Not very pleasant ones, I must admit.

I miss my friends, and I'm sad, and I'm traumatized. And if one more person calls me "diabetic" this week I'm going to...get mad?...have an episode?...actually, I'll probably cry.

((((SAPHO32))))

PTSD is a hard thing to deal with. Stuff that other people would blow off or not even be affected by can trigger you. I deal with that myself. I remember going to see Braveheart with my ex-boyfriend and getting triggered during the movie. I felt about stupid afterwards but I couldn't help it. At that time I did not know any coping skills! I know coping skills now but I am still working on them.

I feel bad because I was actually up that late and if I'd known we could've chatted. I kept trying to go to sleep and couldn't. From about midnight until 4AM I bet I woke up at least twice. Finally gave up and got up. Wheeeeeee, here I am. I can't believe it considering that I even took an Ultram last night which I don't do too often as I take 3 other medicines that are labeled to cause drowsiness. I don't know, last time that happened they said it was the PTSD or something. I am a super light sleeper and if you touch me when I am sleeping I am going to wake up with a roar and you may get called something nasty.

You've got people here who care, though. You've got my email so why don't you drop me a line and vent some if you want to, okay? I'll be back on here again later after I get a shower and do my morning stuff.

Just know you are in the process and stuff will happen sometimes along the way, but you can handle it as it comes.

SFK

[Shyfemmekat]

ENT appt. done. Ears and hearing are fine...he thinks vertigo is MS related (brain) so is sending info to my neuro.

No word on trip info yet.

Moody and bitchy today, FYI.

Today would have been my Dad's 74th birthday, and I have been on the verge of crying all day.

Hope everyone is doing well, holler if you get a chance.

SFK

[Peregrine Magic]

ENT appt. done. Ears and hearing are fine...he thinks vertigo is MS related (brain) so is sending info to my neuro.

No word on trip info yet.

Moody and bitchy today, FYI.

Today would have been my Dad's 74th birthday, and I have been on the verge of crying all day.

Hope everyone is doing well, holler if you get a chance.

SFK

{{{{{ Shy }}}}}

I'm still blue, too, but am "leaning into the spear" (meaning feeling my feelings and not avoiding the triggers) as a yogi recommended to me recently. It's not really helping in the short run, as I am feeling my feelings, which sucks.

I still have both of my parents and I am grateful every day for that. I can only imagine how hard it must be to mark your dad's birthday without him.

{{{{{ beloved thread mates }}}}}

I am frustrated today, trying to sing and it just not sounding right. Maybe I'll up my Parkinson's meds again. I want my voice back.

I want to believe in miracles. I want to believe that we'll all be around for our own personal cure(s), but this belief is not always easy to maintain. Today in the mail I received a form from my disability retirement where I have to state whether I want higher monthly benefits for me or whether I want my kids to get a significant monthly benefit (for the rest of their lives) after I die. Fortunately (in a way) I can't live on the lower benefit so I didn't really have the option to leave my kids the monthly gift. But what a horrible decision, having to bet against my own survival to get money to my kids... especially given that it would statistically be a good bet. After all, what's the likelihood of both cancer and Parkinson's being cured in the next few years?

Arrgh.

Peregrine

PS: Everybody who has talked recently about learning issues, my heart goes out to you. I taught little kids as best I could, but the educational system is not designed even now to support children who learn differently. (I don't personally know about higher education, but from what you've said in this thread it's possibly than K-12.) I wish I had been able to afford private school or home schooling for my son.

[bigbadbutchdaddy]

wow...hasn't been a post on here in a while...today was a very lonely feeling day for me, with Cancer. Some are up days, and I'll write notes to those who need a lift, which lifts me. Today? Days like this just happen, and many of those on this thread are partnered. I was single when diagnosed, and to think of dating again, of even finding someone caring who wants to talk with someone with a disability is quite daunting. Perhaps someone here is interested in intelligent conversation...I'm just looking for intelligent signs of life in the universe when the nights get long. Most of the time I can manage to keep positive.

[Holliday]

wow...hasn't been a post on here in a while...today was a very lonely feeling day for me, with Cancer. Some are up days, and I'll write notes to those who need a lift, which lifts me. Today? Days like this just happen, and many of those on this thread are partnered. I was single when diagnosed, and to think of dating again, of even finding someone caring who wants to talk with someone with a disability is quite daunting. Perhaps someone here is interested in intelligent conversation...I'm just looking for intelligent signs of life in the universe when the nights get long. Most of the time I can manage to keep positive.

A hug for you:
((((((bigbadbutchdaddy))))))))
The nights are long here, too.

Holliday
xox

[Shyfemmekat]

I Peregrine Magic.

Yeah, both of my parents have been gone for a while now, mom for almost thirty-two years and dad for seven. Rhon and I met 3 months to the day after he died. I am creating my family as I go.

In my PTSD group my therapist, who was the facilitator, stressed being mindful, and also that feelings are not inherently bad, they just are. She said a lot of PTSD folks are afraid to really feel, they are scared that somehow they will shatter into a zillion pieces and just never get it back. She also said in 14 years of doing her job she's never seen that happen. Comforting.

I guess for me I get sick of crying. In my house growing up it was better to get angry than to cry. Crying was making yourself vulnerable which was not smart at that time. So now sometimes when I feel sad or upset I will get angry. I'm working on it.

SFK

[Shyfemmekat]

wow...hasn't been a post on here in a while...today was a very lonely feeling day for me, with Cancer. Some are up days, and I'll write notes to those who need a lift, which lifts me. Today? Days like this just happen, and many of those on this thread are partnered. I was single when diagnosed, and to think of dating again, of even finding someone caring who wants to talk with someone with a disability is quite daunting. Perhaps someone here is interested in intelligent conversation...I'm just looking for intelligent signs of life in the universe when the nights get long. Most of the time I can manage to keep positive.

Hey bbbD,

I've been praying for you. A lot.

Check your PM.

SFK

[Jules]

Apparently there are several us who have never met the Sandman, or are only in a superficial relaton ship with him. Maybe we should set up a late night chat. I can usually go sleep at a resonable hour, but I have to remember, I'm on drugs and those help. But after going to be, I usually wake in 3-4 hours and toos and turn for an hour or so before getting up....much to the cat's disgust!

I don't have any answers shortly of we all just commiserate together. BBBD, I know this is a poor replacement, but do you have pets? I've found lengthy coversations with Pebbles and Ethel sometimes help. Besides that, they don't give me a hard time! Aside from not having a partner, do you have some sort of support group? Perhaps that could take care of some of the lonliness. Also, if you just want to chat someone, I'm available. Not exactly what you have in mind, but......

Peregrine and SFK, I'm so sorry about your parents. I don't care how long its been, the death of a parent will affect you. My mom passed 31 years ago and I still miss her so much, not a day goes by that I don't think of her. My dad passed a year ago this past September, and the same goes for me. I "see" them a lot after going to bed and closing my eyes, they just pop up.

Again it appears that I'm rambling in drug enhanced phase, so I'll end this. I hope everyone has a good Thursday.

[Shyfemmekat]

Apparently there are several us who have never met the Sandman, or are only in a superficial relaton ship with him. Maybe we should set up a late night chat. I can usually go sleep at a resonable hour, but I have to remember, I'm on drugs and those help. But after going to be, I usually wake in 3-4 hours and toos and turn for an hour or so before getting up....much to the cat's disgust!

I don't have any answers shortly of we all just commiserate together. BBBD, I know this is a poor replacement, but do you have pets? I've found lengthy coversations with Pebbles and Ethel sometimes help. Besides that, they don't give me a hard time! Aside from not having a partner, do you have some sort of support group? Perhaps that could take care of some of the loneliness. Also, if you just want to chat someone, I'm available. Not exactly what you have in mind, but......

Peregrine and SFK, I'm so sorry about your parents. I don't care how long its been, the death of a parent will affect you. My mom passed 31 years ago and I still miss her so much, not a day goes by that I don't think of her. My dad passed a year ago this past September, and the same goes for me. I "see" them a lot after going to bed and closing my eyes, they just pop up.

Again it appears that I'm rambling in drug enhanced phase, so I'll end this. I hope everyone has a good Thursday.

I am becoming thoroughly convinced that this SandMan person has a personal vendetta against us. He never seems to show up when he is needed most. He does drive-bys where he may stay for an hour or two at a time. He promises a lot but frequently does not come through.

Of course perhaps I am prejudiced, being as I only got five hours yesterday in two segments.

Jules, one must always remember that the comfort of the feline(s) is our utmost duty at all times. One must be sleepless without disturbing any resident felines. One must slip carefully out of the bed without ungraciously dislodging the feline and causing it further mental anguish. At least that's what my children tell me.

bbbD, welcome to Smiley Mail. I hope you will enjoy a little break from bills periodically and something fun from a fellow thread member. Email is also a wonderful support tool. I am enjoying getting to know you.

Sigh, I bet this is rife with typos. I need coffeeeeeeeeeeeeeee.

Rhon is coming home soon so must dash and get coffee together, snag a shower and answer a PM.

I think a scheduled chat would be way too fun. Jules, I don't know how to do that, can you and some of the other computer literati help?

All right, going to head out. I'll be back later this afternoon.

SFK

[bigbadbutchdaddy]

Sandman fanclub member here, too (waving hym away) thanks for everything you said, Jules. I lost my Mom last June, and yesterday was a day I really missed her, because it was a sister's birthday. and we talked and recalled things mom would do on birthdays. all the strong chemo and drugs just turn on those emotions at the most inopportune times, like right when i'm in public.waterworks...you've probably been there.

no pet, jules. i'm too tired to do a little critter justice at this time. there are family, friends who help unbelievably, but none of them holds me at night, if you know what i mean. so i hold the top of my laptop and open it. thanks for being in here when i do.....thanks more than you know to you and sfk for touching base with me.

[Peregrine Magic]

Sandman fanclub member here, too (waving hym away) [...] there are family, friends who help unbelievably, but none of them holds me at night, if you know what i mean. so i hold the top of my laptop and open it. thanks for being in here when i do.....thanks more than you know to you and sfk for touching base with me.

The Sandman visits me, but hy is such a player... hangs out for about four or five hours and then is abruptly gone. Today I woke up at four AM to lie there with my eyes closed for 45 minutes, stare in the dark for a while, pray for healing, watch the early news with the lights still out... Now it's officially daytime, so I give up.

Yeah, it stinks to be alone with cancer. It's worse to be in a bad relationship, and I do have a history of romantic train wrecks, but I sure think it would be nice to have someone (compatible and sane) to lean against in the evening. That might not seem likely for you and I, given that we're not real marketable at the moment. Anything is possible, though, from spontaneous remission to true love.

Blessings...
Peregrine

[Sweetstonefemme]

You both are marketable, your not the problem the market is..........

The Sandman visits me, but hy is such a player... hangs out for about four or five hours and then is abruptly gone. Today I woke up at four AM to lie there with my eyes closed for 45 minutes, stare in the dark for a while, pray for healing, watch the early news with the lights still out... Now it's officially daytime, so I give up.

Yeah, it stinks to be alone with cancer. It's worse to be in a bad relationship, and I do have a history of romantic train wrecks, but I sure think it would be nice to have someone (compatible and sane) to lean against in the evening. That might not seem likely for you and I, given that we're not real marketable at the moment. Anything is possible, though, from spontaneous remission to true love.

Blessings...
Peregrine

[Shyfemmekat]

Sandman fanclub member here, too (waving hym away) thanks for everything you said, Jules. I lost my Mom last June, and yesterday was a day I really missed her, because it was a sister's birthday. and we talked and recalled things mom would do on birthdays. all the strong chemo and drugs just turn on those emotions at the most inopportune times, like right when i'm in public.waterworks...you've probably been there.

no pet, jules. i'm too tired to do a little critter justice at this time. there are family, friends who help unbelievably, but none of them holds me at night, if you know what i mean. so i hold the top of my laptop and open it. thanks for being in here when i do.....thanks more than you know to you and sfk for touching base with me.

*Smiling sadly* You know, that's what my stepmom and I did yesterday, talked about my dad. I miss him so bad sometimes it's hard to breathe. for bbbD.

MS does the same thing with emotions. I was doing it several times a day. Um, can you say majorly embarrassing?! The neuro told me it's called "emotional lability", and I have it like crazy. The meds help me quite a bit, I don't start crying at the drop of a hat very often now.

Ha, thank YOU! I had horrible insomnia last night and since tonight is shot night I bet I will again.

Rhon's off to work and I am waiting for my shot to warm up.

No word on the trip yet. I hope they don't just ship me the itinerary a day or two ahead of time, which has happened before. I HATE that.

SFK

[Shyfemmekat]

The Sandman visits me, but hy is such a player... hangs out for about four or five hours and then is abruptly gone. Today I woke up at four AM to lie there with my eyes closed for 45 minutes, stare in the dark for a while, pray for healing, watch the early news with the lights still out... Now it's officially daytime, so I give up.

Yeah, it stinks to be alone with cancer. It's worse to be in a bad relationship, and I do have a history of romantic train wrecks, but I sure think it would be nice to have someone (compatible and sane) to lean against in the evening. That might not seem likely for you and I, given that we're not real marketable at the moment. Anything is possible, though, from spontaneous remission to true love.

Blessings...
Peregrine

A certain package arrived in my mailbox today...hmmm?

I cannot wait to play the CD. Did you know like four of the songs on there are personal favorites of mine? I kept reading off titles and squealing excitedly while Rhon just grinned fondly and said, "That's good, sweetheart, isn't it?" I had NO idea you liked Smokie Norful!

Regarding cancer...I have never had it. But it hovers around my life on some level at all times. Cancer was something Rhon and I discussed when we decided to be together, the possibility that it might show up for a third time. I think she was kind of leery about that. I figured, hey, why waste the opportunity to love someone? I don't know what might happen tomorrow, but I know I love this person today. We just celebrated 11 years in remission for her now but please don't think that a day goes by when it does not cross my mind, that it could come back. I used to make myself (more) nuts worrying about it, but it's not something I can control. I just love her today. I mean, ultimately we have NOW.

I repped SSF for her very astute observation about "the market". And I will end this post mumbling something about pearls before swine...those who cannot see the beauty inherent in you are the ones who are really sick...soul sick.

Hugs, all...
SFK

[koop]

Will somebody remind me the next time I decide to give the house a good clean that I won't get anything else done. Should have just paid the money for the cleaning person but money is tight and I thought it would be good physical therapy. It is, but I need to paint also to get the room ready for a new room mate and my body is drained!

[bigbadbutchdaddy]

thanks for all the kind strokes everyone. this is a great crowd of caring people, and a great thread. Peregrine, I look forward to getting to know you. Sweetstone femme, and Jules...marketable is a good word. Hadn't thought of it just like that. LOL Actually, intelligent conversation here helps so much...ty all. And I'm on Yahoo IM if any can't sleep and see me online...grab your coffee,and ring the bell!

[sapho32]

Will somebody remind me the next time I decide to give the house a good clean that I won't get anything else done. Should have just paid the money for the cleaning person but money is tight and I thought it would be good physical therapy. It is, but I need to paint also to get the room ready for a new room mate and my body is drained!

Um...reminder: one strenuous thing per day.

Not really helpful, huh?
---------
I felt fine yesterday but woke up this a.m. with a nasty cough. During the day, I've developed a headache, sore throat, and a self-pity attitude. Somebody snap me out of it!

I don't have the best lungs, and I'm very prone to bronchitis (yeah for me!). It's possible I'll be in the emergency room tomorrow morning. My immune system is so weird - I'll go a year without getting sick. Then whammy, I have 2 or 3 months where it's just one thing after another.

The only thing I've been able to eat today is 1/2 a chicken breast. I'm not even hungry, which is not like me.

Self-pity is alive and well at the sapho household!!!!

Somebody be mean to me so I can get mad. I always feel better when I'm angry.

[sapho32]

I'm having trouble breathing and I'm getting really emotional (probably because I've only eaten about 400 calories today). The combination of tight chest and impending tears doesn't thrill me. I'm going to urgent care.

Wish me luck.

[Shyfemmekat]

I'm having trouble breathing and I'm getting really emotional (probably because I've only eaten about 400 calories today). The combination of tight chest and impending tears doesn't thrill me. I'm going to urgent care.

Wish me luck.

Sounds like a panic attack I had once. I'm fluffy and I thought it was a heart attack. They gave me an Ativan prescription and sent me home. I never filled it because I heard it was very addictive. I feel like that sometimes when I am triggered, I feel choky. It sucks, but I have learned a few coping skills for it.

Hugs and keep us posted, okay?

I may be back on VERY late, time to get a nap.

SFK