A little non-profit news.

When I was diagnosed with breast cancer and recovering from my mastectomy, I called y-me a few times. I did run into a couple of issues; one, they don't peer match by size (which I doubt I'll be able to change but I can at least make myself available on that category), and they had no disabled breast cancer survivors for me to talk to. So I contacted them to volunteer, both as a hotline volunteer and as a peer match. Their volunteers are all survivors of at least one year. The training is 4 days before the year anniversary of my mastectomy, and then I'll be working with a coach for a few calls. I'm pretty excited; y-me was not the only place I called looking for a match, but they gave me other people to call, even though I never found a match. I still called y-me several times, like when I discovered my "armpit breast," an artifact of being a large woman. I was utterly shocked, especially since it was quite swollen when I first discovered it, and the hotline volunteers talked me down from a panic more than once.

I know I'm not the only woman with a disability to also face breast cancer. Hopefully, once I've trained, the next woman who needs to talk to another disabled woman won't go without that support. They only want 20 hours a month for a hotline volunteer, and it is a job I can do even when I need to lie down. The training is two full days, but they'll accommodate me as best they can so I can train with my limitations. Some extra pain meds for breakthrough pain and some extra time to sleep the next week, and I should be able to manage it.I'm thrilled and excited.

While I'm talking about supporting y-me, my friend will be walking for y-me on Mother's Day in Atlanta, Georgia. For obvious reasons I don't walk much, though I may choose to roll in a later event. However, this year, I'm going to send my friends to support Susan here.

The original disability claim was dated from Aug 31, 2001, which is the last time I worked, at Lucent. At that time, I'd started using a cane, and was working at 20th & Welton. To go to the 16th Street Mall 4 blocks away, I had started to use the bus rather than walking the four blocks, because the walk would overtax me for the afternoon. In my opinion, that was a bit early; I had returned to school for a second career, and gave that up in 2003 when the pain got too bad to be able to even go to school full time. I filed from 2001 on the advice of the attorneys; had I filed by myself, I'd probably have filed for late 2003 when I decided that I wouldn't be able finish school or work (and had one heck of a depressive episode as a result.)

I had a manual wheelchair for long distances in 2004 -- I don't remember the month. In 2006, I attempted to get insurance to pay for a power chair, because my shoulders weren't handling transport in the manual chair well at all -- it's why I didn't crochet for over a year, because my shoulders hurt far too badly. The attorney told me on Monday that I had to establish disability by Dec 31, 2006, because that was the end of my SSDI time limit; if the disability was established for after that, my work history would no longer apply and SSI is far, far less income, especially since I was in a highly skilled and relatively high paying position until mid 2001.

I met my attorney at 12:45 for my 1:15 disability appeal hearing. About the time the hearing was to start, the ALJ (Administrative Law Judge) called my attorney back prior to the hearing. She came back out, and said that the ALJ would be willing to find me disabled if we would amend the filing to a disability beginning in April, 2006. I thought for about 2 seconds, and agreed. -- Disability from April 2006 beats the heck out of no disability, and with my lack of recent work history, I'd be quite screwed. And it means I'd have a far better chance of making ends meet from here forward, which is my biggest concern at any rate. In my opinion, I probably couldn't really work by some time in 2004, but since arguing for the extra year and a half to two years could have lost me any determination of disability at all, I agreed for the sake of disability income in the future.

I won't get the official written decision for a couple of months, but the ALJ did me the great favor of telling me on the record that he did in fact find me disabled as of April 2006, so there is no waiting on tenterhooks for the decision to find out the result, just waiting to see what my benefits (and The Gothling's benefits, as my minor child) will be, and when they will start.

The way SSDI works, there is a waiting period of five months before benefits begin, since everyone of course has a cushion of at least six months salary, especially in the current economy.Ssince my determination begins in April 2006, my benefits will be retroactive from November 2006. Medicare does not start until SSDI benefits have been going on for two years, so I won't be on Medicare until, most likely, November 2008. We had already researched the high-risk insurance pool for Colorado; Hubby's current employer does not provide insurance anyway, so he had been doing insurance research for some time, as we will need insurance by the end of March. The high-risk pool is a sliding scale by income, fortunately, so we won't bankrupt ourselves with the insurance till I get Medicare, and the other two will be much easier to insure.

It's resolved, and I am utterly drained. I think I'll be sleeping a bit extra for a few days.

OK, I haven't been posting much here

But my SSDI hearing will be January 30, 2008, at 1:15 pm. I just got a call from the attorney; I haven't anything in writing yet but stuff is on its way. Info on the hearing, a video on what to expect...Gods, please, let this go well!

19 months since my benefits were denied. The atty told me it would be 18-24 months, so I guess it happened quickly. I'm happy I have a date set -- it would be nice if that meant this ordeal was going to be over, but I can't feel that optimistic yet.

Good energy and good wishes for the right outcome, where I receive a stipend, would be greatly appreciated. It would also take care of my insurance dilemma at least partially, as I would be on Medicare with some Part B addition to pay for my meds. I guess I need to start researching that soon. Any advice or input welcome.

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On the crochet front, I've been working on gifts -- a scarf for the Worlds Best Teacher, a hat and wrist warmers for a friend, and a black (of course) shrug for the Gothling. I will try to get some crochet pictures posted; maybe even put some recent family photos on Flickr. I'm trying to get some school photos out for the family for the holidays; I hope everyone can live with the fact she has dark blue hair! She loved it. It's finally starting to fade out; that color lasted a long time.

Events upcoming

Halloween is tomorrow, and The Sprog is terrifically excited. Me, I'm looking forward to Thursday, because I get to go to The Lamb Shoppe early Thursday evening, and meet Kim Werker of Crochet Me and get a copy of her new book, Crochet Me: Designs to Fuel the Crochet Revolution. I was told to bring my hook and yarn; I'm working on a fairly intricate scarf using one of my wooden hooks, so I'll bring that. Hanging out and crocheting with other crocheters. What fun!

This is shaping up to be a busy month with all sorts of different events turning up from all over. I need to remember not to overextend, but I plan to enjoy it.

Halloween Crochet!

Felted skulls and a bag shaped like a cauldron. The cauldron was a 2 dimensional pattern, but I crocheted a circle for the bottom and turned it into a 3D piece, though that's not easy to see in the photos.










I'm at a science fiction convention -- MileHiCon -- this weekend; I'm hoping to post more crochet soon. I've got the photos -- it's just getting tem up on the Net and available!

While I'm talking about conventions, Dear Santa, please send me tickets for the whole family to Denvention 3, the World Science Fiction Convention here in Denver next year. I last went to a WorldCon in 1976 -- 32 years ago! We're working like crazy to come up with the fundage; but frankly, it may take my actually getting disability with "back pay" to be able to swing it. I'll keep working on it, though. It's been a really long time.

Fall apparently makes me craft-y

Michael's craft store is having a big sale this week. I bought several little ovensafe stoneware type loaf pans for a buck apiece, and they are now in various spots in the house holding collections of little things that get up and wander off. I got some wooden cutouts for Alyria to color, and did save out one pumpkin for myself. I also got a couple of inexpensive terra-cotta jack-o-lanterns, and a 6 pack of flickering LED tealights. I put one of those in the smaller pumpkin, but I did get a small pillar candle on sale for a buck for the bigger, $2 pumpkin. For a person that can't wear autumn colors, I do love to add them to the decor! I passed on the half-price craft pumpkins and a carving tool for them, though it was mighty tempting. I may go back to get a couple and the tool, since we tend to have rotten luck with actual field pumpkins. Hmm...that idea has merit. Need to run it past the family unit.

I also need to get a ball of Bernat Soft Boucle yarn to swatch with. I think I've settled on it for a hoodie for me and for Alyria, but before I commit to bunches of yarn, I really need to try it out to see how it works up and how it feels. The yarn in a ball feels great, and I think it will be fine, but this garment will be more challenging than what I've made before. Then there's the hoodie dress I have my eye on in Crochet! magazine. I have a yarn that might work, and I have enough of it, I think. That's a big project, though -- and will probably require purchase of a slip. It's on the list, just not at the top! The jacket on the cover is pretty nice, too.

I picked up a copy of Positively Crochet!and I love it! Lots of patterns to choose from, a wide variety of sizes, and projects that even appeal to the Gothling, with appropriate color changes, of course. Most pattern books contain between 10 and 25 patterns; this one has a full 50 to choose from, as well as words of encouragement on every page. I highly recommend it to any crocheter.

Holiday and blog plans

My folks were here for the long weekend, and we spent the whole time with them. It was lovely, though I am in pain now from sitting in my chair so long. I did ask to lie on their hotel bed to talk to Mom yesterday, and that helped. I'm afraid I'm going to be sore for a few days. Hubby kept telling me that they'd understand my limitations, and I'm sure they did, but I know I was frustrated with how little time I could spend with them.

We spent most of the weekend talking, which was wonderful. the sprog, being 13, got bored and wandered around the hotel a lot; on Monday we brought our digital camera and she took lots and lots of photographs. She's been talking about an interest in photography, and she did have some nicely composed pictures. On Sunday, we went to see Mr. Bean's Holiday, and I assure you that is worth its own entry soon, when I have the time. Short review: Don't. I had my suspicions ahead of time, but that was what my folks picked. Hubby and I walked out about half an hour into the movie.

The conversation was wonderful, and I sent a pink ribbon back for both my mom and sister, who had been very supportive during my cancer treatment. It isn't much, but I'm happy I can at least give them a token of appreciation. We went to dinner Monday night, then parted ways, and my parents are well on the road back to Lenexa, KS at this time. Alyria and I both cried after we said our goodbyes; we hadn't seen them in some time and while we were tired from the excitement (we're homebodies most of the time any more), we weren't ready for them to leave.

I'm hoping to have some crochet posts up this week, and also want to put some recipes on my blog. I'll post recipes that I can make without hurting myself, so they are relatively simple but yummy dishes. I'm hoping to turn this blog into a more creative space and less of a health issues space, though of course the health issues are integral to my life and will remain an important part of the blog as well.

crochet, and doctor stuff.

First, Hubby is employed! He starts the first job of his new career at 6 a.m. Monday morning! Whee! He's pretty wiped from the stress; we're both terrifically relieved that he has a job with a reasonable hourly rate, and a promise of a review and a raise after 30 days. I'm very proud of him; he's worked really hard in school and then in job hunting to make this possible.

I've just finished up the chemo caps and thongs for my friend. We have piccies, but I want to wait until she sees it first. Finally, I'm crocheting enough to warrant recording it!

I splurged and stopped at Barnes and Noble and picked up Crochet! Magazine today. I've gotten a few pages in, and am definitely enjoying it. I do need to re-up with the Crochet Guild of America again when our wallets ease up. I'm really enjoying crocheting again, after nearly a year off. It feels good to be making things again. I'm working on some market bags and a capelet for my daughter -- the market bags are easy, so I'm working on them for fun and on her capelet for beauty.

This is roughly the 3 month (plus a little) anniversary monthiversary(?) of my mastectomy, and thus I have seen the surgeon and the oncologist. I've skipped a month's menses, but as long as I'm not having odd bleeding, that isn't an issue. And I'm at that certain age anyway. The addition of the Tamoxifen has increased the severity of my hot flashes, which is good, according to the onco. It may well be involved in the irregularity of my menses, too. I did go through some PMS type stuff a couple of weeks ago -- got really hungry and craving chocolate, but it went away without, erm, issue.

The onco poked and prodded me in various places, including a clinical breast exam on the remaining one, and felt lots of different lymph node locations. He told me everything looked good. The surgeon didn't examine me this time, but plans to in three months, when I will also see the oncologist again. After that, I think it goes down to every six months for both doctors. The plan is for me to have my next mammogram next April, on schedule, and six months after that have an MRI. If the surgeon has her way, I guess I'll be going in alternating every six months for a mammogram and an MRI; if my size stays down where I am or less, that won't be a major issue, though lying on a table with holes cut in it for my breasts to hang through for a good picture is far from a comfortable position.

The surgeon, after checking me over, started to leave, then stopped. She said something like "I really appreciate your positive attitude. You haven't let this stop you or change what you are doing." A bit confused, I said, "Well, the chair really changed more of what I was doing. You told me I was disease free, so I didn't change much after I healed." She replied, "Oh, you are. But you continue to go forward, and plan, and go out and get things done. That's a nice change for me to see from a lot of my patients."

That surprised me; I'm not inclined to think of myself as Little Miss Sunshine. (Although Catherine once called me Pollyanna. A long time ago.) But she was quite definite that my cheerfulness was a welcome relief. I went home and talked to the husband, and his reaction was "Think about who she must deal with every day. It sounds like a lot of them have given up." Most of her patients are cancer patients, but with all the stuff I'd read about a positive attitude helping (although there are studies that say it doesn't really -- it still makes life more pleasant than moping) I didn't expect to be such a shining example, I guess. Plus, I'm told that this incident, while increasing my risk of recurrence, has not itself shortened my life. That feels like a gift, for sure.

So maybe I should become a motivational speaker. Wonder how you do that, and if there is some kind of an agency like a modeling agency for such a thing. That I could probably do for a living, as it's within my limitations.

I also finally pulled together the documentation on my cancer diagnosis and surgery to send to my disability attorney. In addition to that sheaf of papers, I added a form that Health and Human Services asked for from my doctor attesting that I was in fact permanently disabled and not able to work (or stand). I'm hoping against the odds that form might actually circumvent the hearing process and get me administrative adjudication, but I'm not holding my breath for it. On the other hand, this form should be sufficient for me to get my ID as a disabled passenger from the bus company. No one argues when I pay the discount fare from my chair, but the rules do say I need to have that ID -- and now I have a form that they should accept. That means a trip downtown is in my future. I think I'll wait till I have a bit of cash handy so I can at least play a wee bit.

Musings on paper, pens, and creativity

I have a fascination for blank books. My nicest one I haven't written in; although I suspect the beautiful leather covers a replaceable book and I should. use the book. It has completely blank pages, and I hesitate to mark them up with mediocre sketches and ragged looking writing. However, I noticed that the blank books I like to actually use contain grid, graph, or quadrille paper (same thing, name depends on your region, I suspect). I write in all caps most of the time because I spent so long as a programmer, and the graph paper resembles the coding sheets I used to use back in the dark ages when I wrote programs, then transcribed them onto punch cards. With graph paper, I don't put one letter per block, but I do prefer it for writing, I guess so I can make columns. I also like to doodle within the confines of the graphs. I have pads of paper with the graphs on it as well; Levenger, the really expensive "store for writers and readers", has paper with all three formats, and I got the graph version.

I don't write much except while typing; I type at about 60 wpm and it's faster and easier for me to write on a keyboard than on paper. So with paper, I mostly make lists, or jot down random thoughts and things I want to follow up on later. URLs, places that I want to research, that sort of thing. But as much a child of the electronic age as I am, I still like to have paper and pen around; in fact, though I'm not using them at the moment, I want to start carrying and using my fountain pens again. They've been languishing in my desk since I stopped working; I think it's time to take them out and start using them -- there's a definite pleasure to writing with a fountain pen that can't be matched by the gel pens that I use most of the time for check writing and filling out forms. Heh -- fountain pens require heavier paper, too, like the stuff I have from Levenger's. That's undoubtedly part of the pleasure in writing with a fountain pen; higher quality paper. The only time I want to use a pencil is if I'm doing math with the kiddo or sketching something, and I don't like my sketching well enough to do it often. I'd even rather doodle in ink -- though I do like colored pens for doodling. I also prefer a fine-tip pen, whether it's a ball point pen, a marker type, or a fountain pen.

The Squirt likes ruled paper, even though most of what she does is drawing. I know my friend Holly always carries at least one book with blank paper in it for her drawing and sketching pleasure. She will carry pencils and colored pencils or markers to draw things when she decides she wants to have paper around. She really loves the 0.7 mm disposable pencils that you can get fairly cheaply; she's hard on her tools (like her mom, I'm afraid) and these are durable enough to last through most of their lead before they get mangled. I prefer a 0.5 pencil, but at the moment, all I have are the disposable ones because stuff gets misplaced. I'll have to get some 0.5 lead and a pencil or two from the local pen and paper store in the next few months.

What paper do you like to use? Onionskin, copy paper, homemade, heavy stock? Do you like it blank, ruled, or graph paper? What do you like to use to write and/or draw? Do you like ballpoint pens, rapidograph, gel pens, pencils? How do you use your paper and pen/pencil? Do you enjoy the experience? I'm realizing as I write this that I do enjoy actually writing, though it can be hard on my hands. Definitely time for me to clean up and start using the fountain pens more.

On another note, I finally finished a shawl I've had hanging fire for a friend for over a year. I didn't get it done in time for her to take it with her this week to go up into the mountains, but I'm pleased it is done. I'll have pictures when she picks it up; it will look much better on her, as autumn colors suit her and this is a deep gold that made me think of her the instant I saw the yarn. I'm working on a couple of small things at the moment; when those are done I'll start on a Gothic style cape of black and hot pink for the sprog to wear. With some luck and persistence, I can get back into being productive on my crocheting again, and can actually put my other blog back into use as a cooking and crochet blog instead of just a chronicle of my ills.

Bogus!!!

I got a bogus warning on my front door today announcing that a sex offender had moved in to the neighborhood. This is a scam, and they want you to subscribe to their website to get the information. All that information is available for free on the county website; I've already shown the pictures of the two close to my home to the sprog so she's aware, and this is a classic case of marketing by FUD -- Fear, Uncertainty, and Doubt. The folks who run the website at www dot neighborhoodredalert dot com (I will not link to such a dishonorable company) hope to frighten folks into logging onto their website and paying their monthly subscription fee to access (probably outdated) information that is widely available for free on the Web through local law enforcement everywhere.

Spread the word. Don't give these people any of your money; they're dishonestly trying to scare you into subscribing.

This is a relief...

I can has a life, and not spend it worrying about my attitude and diet!

http://junkfoodscience.blogspot.com/2007/07/magical-fruits-and-vegetables-does.html

The tyranny of assigning blame based on food or life choices is debunked.

I'll eat plenty of fruits and vegetables; I like them. But my size, my food choices, and my temperament don't affect my survival. (It doesn't for non-cancer related issues either -- read back a ways if you are interested. Most of the food police nonsense is utterly unjustified and fat does not mean early mortality.)

And I lost a total of 85 pounds since my Acute Renal Failure in October. I did it with a change in appetite after my illness, not through obsessing over food or counting calories. I'd come off of Remeron, which causes weight gain, and several other meds that were not working for pain control. I suspect that's what is most responsible for the weight loss; not being on appetite-stimulating drugs. My weight has stablized at what is still a "high weight;" but I move better, I feel better, and with the movement limitation imposed by my pain, I'm pretty satisfied with where I am right now.

*Breathes sigh of relief.* I'd much rather focus on living than on surviving.

I highly recommend this blog, by the way. And the "I can has" reference? Check out I Can Has Cheezburger!

Personality profile

There are three other profiles to take there; I will probably take them soon as well.

Update

I've been kind of out of it for a couple of days.

My pain has been very high for about a week. My pain level has been between 7 and 9 when I try to move much; even sitting up raises the pain level; but Gods, it is boring lying down all the time. My lower back/top of the pelvis, where most of the damage is, has been spasming any time I move or sit up. Less than fun, and I have no idea what to do to make it better.

The Tamoxifen is starting to affect me. A couple of nights ago I could not get to sleep. Between the hot flashes, the agitation, and my skin crawling, I got to sleep about 5:30 Thursday morning, and slept very poorly thereafter. I still woke up around 10, but I was very very tired. When Housemate came home after work, I told him I was terribly tired, and started to cry. This isn't normal for me. I gave up on making dinner and lay down; I managed to nap for an hour or so till Hubby got home from his evening class. Once I woke and then tried to go back to sleep, I had the same problem again; awake and unable to settle. I'd doze off while reading on the computer, then when I tried to sleep would be wide awake. Again with the hot flashes, agitation, and crawling skin. I made it to sleep a bit after 3, and again woke at 10. At least once I got to sleep last night, my sleep was restful and restorative; there just wasn't enough of it. Again today I've been tired and weepy, but not as badly as Thursday.

I called the oncologist yesterday after I woke. Got a call back from the nurse. Apparently the first med they prescribe for bad hot flashes is Clonidine, which I already take to control my blood pressure. So the nurse had to talk to the onco for another prescription. I'd asked her to call me before calling in a scrip, and she didn't call back till today. Then she called after office hours, and the kid accidentally dropped the call when trying to get it to me. The nurse called back, and it went straight to voice mail. Once I realized that and listened to the message, the nurse said that the oncologist wanted to prescribe Bellespa, but my pharmacy doesn't carry it. She said I needed to find a pharmacy that carries it.

One, that ain't my damn job. To be honest, I'm not sure a pharmacy would tell me if they stock a drug like that -- it sounds pretty potent. Two, I'm a chronic pain patient. I cannot be getting my prescriptions from more than one pharmacy. Third, my cursory research showed that the drug, which is an ergot/belladonna/phenobarbital medication, is contraindicated for most human conditions and many of my other meds. After reading through the monograph on the stuff, I think the hot flashes will be more bearable than the drug. It is indicated for migraines and hot flashes. The nurse had looked at my current medications, but wasn't concerned with most of them, and with the contraindications on this drug, I think that was an error. I can't say I'm particularly pleased at the moment.

On the other hand, she told me I could take cohosh. It may be next month before I can buy it; I need to check local prices, but it is all right for me to take. I understand black cohosh is the preferred one for menopause. The nurse did say "it's just an herb," and didn't know that it would be effective. It also doesn't have two pages of contraindications with it. And based on the price at that link, I should be able to find it affordably here in town.

So Monday, rather than telling the nurse which pharmacy they can call the prescription in to, I'll be detailing my concerns with the medication and having to find another pharmacy, and probably telling them to go hang and just taking herbals. At least herbals don't have common side effects of drowsiness (I'm already tired all the darned time), dry mouth, and constipation (both side effects of my pain meds as well; I don't want to bind up completely and I'd like to continue to be able to talk), and contraindications to most everything else I take, including those essential pain meds. I suspect any other med they come up with will be similarly flawed, so I'm working on getting used to the hot flashes.

I don't think the family grasps how badly I feel right now. It's kinda hard for them to tell when I'm usually in pain anyway, so I suspect it's not obvious to them that at the moment I'm bloody miserable, compared to my usual level of pain and discomfort. I don't want to stand up on a soapbox and announce how I feel, but it would be nice if they could read my mind and tell that I'm feeling worse than usual. I know that's not reasonable, but that's how I feel. Why can't they tell I'm in bad shape without a large-print sign or a monologue? Of course, if they tried to coddle me, I'd probably hate that too. One of the perils of feeling less than spiffy.


On the more interesting side, the sprog has announced that she wants to try out for sports. I've scheduled her for a sports physical next week, so she'll be good to go for the school year.

Hubby has passed the last class he'll be taking before starting employment -- he has a few more days in class, and will be sending out resumes and starting to interview next week. This weekend, I'll assist in working on some documentation he needs to finish and helping him on his resume.

He is attending a welding inspection class through the AWS (American Welding Society), which will give him valuable contacts, knowledge, and manuals. That's the week after next. He's planning to find a company that will work with him to allow him to finish the 22 days of classes he has left in order to get his advanced welding certificate. As hard as welders, especially good ones, are to find, I suspect he will find an employer to work with him. Of course, with me, he has to make sure the company has decent health insurance -- so he has several factors to consider in choosing his next job. We're all looking forward to getting back to a more normal life.