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PapillonRoseBleue 
4:45pm, April 13, 2009
I'm having connection issues (relying only on VZW wireless isn't working well), have discovered a new therapy (knitting beaded purses - see photo when I have finally managed to figure out to make it a small enough file to make it acceptable to DS so that I can post it :-( !!! ), and have not been around as much but have not forgotten you. (editing note - DS will NOT allow me to have this without italics, so they're here for no good reason....)
Superstahr's good news thrills me, but the suffering she has undergone and the fact that she had to fight so damned hard to get to it she might have missed it dismays me. Thank you God that she is a FIGHTER extraordinaire and pretty darned smart, too.
I don't want us to be scrambling at the last minute to come up with our teeshirts for the Rare Disease Day at the end of February, so why can't we get started on that now? I could even arrange to get some made by the same lady who makes the shirts for the triathlon my daughter organizes and then ship them out to people if we can agree on a design. I can enlist art students at my school and even make a contest out of it, if we'd like.
On that topic, the organizers want an organization that is responsible for authorizations for the teeshirts. We recently had someone requesting business cards to distribute for informing people. We could produce brochures as well. Am I the only person with a vision for an international organization for us or do we think we have it already covered by what is in existence already? Is Wayne Brown's site the answer? I think it is close, but not quite there. I think the PNA falls short because of the expense. I would welcome feedback.
I had some bad news. I had a consultation with my local endo, but unfotunately the lab results didn't include the IGF-1 at that time, so we were a bit blind. I told him I didn't think the Sandostatin LAR Depot 20 was doing the job, especially as the month wore on and that I felt like crap. The AcroMonster is gaining the upper hand again, or as Jokey would put, he's grinning. The doc called a few days later to ask if I had forgotten to take the shot. He didn't give me the numbers and I don't have a copy of the report yet. I will get it later, but it must be bad to lead him to that impression. He must not pay attention either. I TOLD him it wasn't working. I have many symptoms that the acromegaly is becoming very active again. We played telephone tag and when we finally connected it was the evening before I was due to have the next injection. I had considered NOT taking it so I could get clean of the sandostatin and have the gamma knife done in 4 months since the acromegaly is clearly active again. Then I thought it through and decided to keep FIGHTING that damned AcroMonster. I'll keep trying the medication. The doctor had mentioned 2 choices, but only explained one, which was to increase the dose of the Sandostatin. I'll have to get some more information.
When I did some research before going to Mayo in June, I learned that low dose radiation is safer for the optic nerve than gamma knife and that is one of the benefits of proton beam radiation. M.D. Anderson was mentioned as one of the locales where it is available. However, Beaumont is constructing a machine that was supposed to be ready by fall of 2010. In any case, I decided, I don't have to make that decision right now and I don't have to abandon the medication when I've barely started using it.
The other thing I have to be careful of is my emotions, because this is a hormonal disease. I think the meds mess with the horror moans, and the Acro Monster does, too. I am catching myself being rather thin-skinned for such a thick-skinned person. Irony intended - acromegalics will understand....
My GP is an angel. I don't know how he manages to get me to do things that other doctors would not be able to do, but he does.* For example, I just used the CPAP machine for the 3rd night in a row. Prior to the resection, I used it as if it were a part of me, an extention of myself at night. Then I was banned from using it for a few weeks after the resection. Then the GP and then the Sleep Medecine doctors got their underwear twisted about me using for several months following the resection, even though Dr. McDreamy had OKayed its use by then. Trouble was, the sleep apnea improved immensely, I became accustomed to sleeping unencombered, and top it off, the Mayo Sleep Specialist upped the titration enough to blast me to the moon because he inisted on having me spend some time on my back and set it for what I would need on my back though I had been trained for more than 5 years at that time that it was CRITICAL to my life to NEVER sleep on my back, so I don't sleep on my back. The local guy reset the titration to a 9. I wonder it that's enough now that I'm regaining weight and the AcroMonster is returned? When I look in my crystal ball, I see a night in a sleep lab :-( That's an expensive hotel. Thank God I still have insurance, but that's a whole other subject because the school board is actively trying to take that away from us.
*(That must be why so many other doctors see him as their personal physician, too.)
Wherever you are, I hope you are doing well and if you are not that you can muster up some hope that things will be better around the next corner.
Comments
This story was featured in a Chicken Soup book a long time ago. It was very touching then, but the impact it has in this video is even more amazing. Fay shared the link on Facebook and now I'm sharing it with you here. I had a student commit suicide in the summer of '97 and I have a teacher friend who gave a student a pass to the restroom who hung herself there. We never know when we might make a difference that would prevent something like that. If you're thinking of something like that, please hold on, things usually get better even though it seems impossible. If you think you don't make a difference, maybe this video clip will help you think diferently about that.
Peace and Love.
Rose
Peace and Love.
Rose
(the link directly below is the one I used to get to the video)
http://www.facebook.com/ext/share.php?sid=127683293501&h=1zTaM&u=YleGP&ref=nf
(all the rest of this is extra stuff that was on the YouTube site)
http://www.youtube.com/watch?v=sN_L...
Comments
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thanks for sharing this rose...i really liked it...
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Thankyou Rose so much for sharing this.This is a very food for thought video
Here is a link for a song I'd like to share with everyone
Ingrid Michaelson "Be OK"
Thank you Basketmoon for sharing it with me/us.
http://www.youtube.com/watch?v=vpM...
...and here are the lyrics.
I just want to be ok, be ok, be ok
I just want to be ok today
I just want to be ok, be ok, be ok
I just want to be ok today
I just want to feel today, feel today, feel today
I just want to feel something today
I just want to feel today, feel today, feel today
I just want to feel something today
CHORUS:
Open me up and you will see
I'm a gallery of broken hearts
I'm beyond repair, let me be
And give me back my broken parts
I just want to know today, know today, know today
I just want to know something today
I just want to know today, know today, know today
Know that maybe I will be ok
CHORUS
Just give me back my pieces
Just give them back to me please
Just give me back my pieces
And let me hold my broken parts
I just want to be ok, be ok, be ok
I just want to be ok today
I just want to be ok, be ok, be ok
I just want to be ok today
I just want to feel today, feel today, feel today
I just want to feel something today
I just want to know today, know today, know today
Know that maybe I will be ok
Know that maybe I will be ok
Know that maybe I will be ok
Comments
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Hi Rose yes I saw this the first time you wrote your journal and listened to it straight away its cool and something else it came just at the right time.JJx
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gracias amiga...i liked it very much!
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I'm glad you like it mi amiga ;-)
Past Entries
Hi Rose, I understand where you are coming from. It has been a fight to the finish for me also to get the doctors to take my GI issues with the medication seriously. I had my MRi today and guess what? The tumor has grown which is why the growth hormone is up again. I guess we just have to keep pushing and pushing until they take us seriously or find someone else who will.
Regarding the acro organization, what kind of designs are we looking for and what are we doing exactly? I'm going to try to squeeze some designs in, in between reconstruction on our house. Love your beaded purse idea. Take care and hang in there Rose. We will see this through.
northwest2
So sorry to hear about the hGH levels and the MRI results.
The last day in February is International RARE DISEASE DAY. There was and probably will be again, a contest for a teeshirt. Last year they had iPods for some of the prizes. I just wanted to make people aware of acromegaly and to create a cool teeshirt in time for the day. I didn't know about it much before the date. Fay is the one who informed us. Flouncy and Jokey and CoolCat would have love shirts but I don't think any of them ended up with one. Maybe not Swampy either. This year I'm hoping that anyone who wants one will be able to have one and that we can be more organized more in advance - like start NOW. On Facebook, Moge posted an interesting question, which was an issue for me, while I was trying to work on the shirts, with little notice last year. What does the Acromonster look like? I have a little theory that each person has his or her own personal one that matches the hell in his or her own journey, yet we all have some similarities in our journeys so we should be able to create a generic Acro Monster for a tee shirt that we could create for everyone to be able to have and do well in advance so that it could be made available to people all over the globe - even if we just make the design available and someone in each region takes care of producing the shirt, although it may be easier/better to make the shirts, then ship them. IF we have adequate time. To have the right to use the NORD symbols we are supposed to have a parent organization that registers with them. We don't have one. I think we need that. That's the part that's missing. There's no American Acromegaly Association. There's no International Organization of United AcroMonster Sitter Downer Kickers. What if there were a group that sponsored a web site for people like JeriTX to go to a web site to order some informational brochures or business cards. Thanks to Wayne Brown, now there's a place for scared family members and thanks to DS & him and some other sites, there are places on line to get some info but I've felt from the time of my diagnosis that there are missing elements. I don't feel that all the puzzle pieces are in place for our care and I don't think we have the right support organization(s) yet.
Speaking of designs - there is a place I can't believe you're not already telling me about and maybe someday we'll meet at one of these events. One was held in June in Wisconsin and it's called Beads and Buttons. The next one is next w.e. in Illinois, north of Chicago in a town called Shomburg or Chaumburg (don''t know how to spell it) and it might be called Stitches and then a couple weeks later there will be one in MY neck of the woods (sort of) in Novi. The one north of Chicago is right up your alley, ditto for the one in June in Wisconsin - EVERYthing craft related, including QUILTING - you name it, they have it. There are lessons, supplies, the works. I've never been, but some day, I'll go. The one in June is BEFORE school is out and it looks like it will conflict with the end of the school year AND the Glasgow Highland Games. I wanted to take my mom to them the year I had my resection, then she wasn't up to going the next year. In any case, it sounds iike something you'd LOVE!
Reconstructing the house sounds like a pain, but like it will be rewarding once it's done.
Thank you NW, You are so right.
We will be keep up the good fight.
PapillonRoseBleue
Hi Rose...Over the pond as they say lol its good news a support group is being set up at our hospital Flouncy and I will be attending and Flouncys been asked to show her vid ...This is the side I think is so important awareness but also support..Ive been temping and I been through the job system of application forms and this is an eye opener when you have an invisible Disabilility although for some acromonster is not so invisible when it gets its outward grip yet some people still get no help..Sherry no help and her comments its only a disorder of a bit of discomfort.Discomfort my ass the temping job Im in has so shown up what I have to deal with and I was nearly sacked LOL... I lost strength in my hand putting up a box and it nearly landed on the supervisors head but again dont know where they come from but someone stepped in and helped me yet again.I am going for a t shirt and Im all for this it will go along my favourite one out my mind back in five mins one....I been in a battle with acromonster..Acromonster vs working issues but Jokey got a One acromonster a nil and the supervisor didnt get a headache although I was put in one place to work for a while LMAO..All my love to you Rose keep fighting the acromonster
J0KEYJ
What I wouldn't give to be a little birdie on the window sill watching THAT support group in action. I don't suppose there's any silly string and choccy involved ??? I think it's awesome and I'm so glad there's something great going on over there. It's too bad the world isn't just a wee bit smaller yet and it's too bad that video conferencing isn't a bit easier to do. It might be an option, though, so that more of us could be pulled in, even though we couldn't be there in person.
Sherry and Superstahr have been through it. Coolcat has the same thing going on in Québec, too, in terms of disability issues and total lack of support and inhumane treatment from employers and government and doctors who are reluctant to call it like it really is and acknowlege that we suffer more than "discomfort". It's complicated because in the U.S. our disease is LUCRATIVE for the docs and the pharmaceutical companies, but it's crushing us and destroying some people who have no help.
You get sacked, you come over here and we'll find a way to make room for you. The only problem is that there are virtually NO jobs here in Michigan and less health care, so on second thought, you'd probably better not, but I wish I could help more.
I'm on Facebook, too (and wish you were there) but it looks like the acromonster is getting really active right now from what I see here and there. There's a full moon right now, too. Interesting. I really wish we could put him under your porch for good. I hope you have a BIG porch.
BTW, we have an interesting conversation going there - what does the acromonster look like?????? I'd like to know for teeshirt designs
PapillonRoseBleue
Hi Rose,
Sorry you are having these problems with sando, my daughter was the same,lanreotide and sandostatin didnt bring the levels down, and also the pain issues etc, and as you know she had external beam, but 5 weeks ago she went on Pegvisamont, its the last drug out there, although I have heard that there are trials going on for a new drug, I have seen a lot of improvement, she injects once a week 60mg, also still having sandostatin once every 3 weeks, have they mentioned pegvisamont to you we are going over tomorrow for 3 monthly hospital check up levels mri etc, and am keeping my fingers crossed, but I feel it in my heart that we are going to see a drop in levels please God. just thought you could mention it, give it a try before Radiation, its supposed to be 97% successful. they geneally try lanreotide sando, and if this doesnt work Pegvisamont.I think because its so expensive,its not given as a first medication.Wish you all the best with the T.shirts take care
spiegal
Its weird how things have gone...I applied for a partime job and got it once cleared to go in ...I needed something else to go with the hours a friend said there will be some temp jobs at her place but I have to go through a temping agency..Nice a test is put in front of me and even that didnt go smootly but they let me in I think it was question Would you take your earrings out for a job my answer I would take my teeth out for a job if asked..That one got me in well the agency gives me a call and its not the place Im wanted but I thought I will give it a go and oh boy it tests everything that the acromonster can throw at me I wasnt doing very well and I stood there and burst into tears right in front of everyone ...The box everyone cracks up at but its not funny really but there is a funny side but a nice person stepped in and Im still in Ive tried so hard I mean really hard to fight my invisible disabilities.On the outside I look so well but its the drug and sheer stubborness I guess...The acromonster well for me Im taking the design from the student who drew that picture.. the tshirt is what it is all about beating a conditon that is like some dark sneaky thing that is trying to mould me to what it wants almost an inward stalker.A silent inward stalker that starts off quiet and gets worse as it gets more confident because so many people seem blind to it and its exsistance...To me its evil vs good and noway am I going into hell which it has felt at times some discomfort...I want to grab the person who said that to sherry and put them in my place when I couldnt walk in terrible pain knocked out from my allergy and put them in front of my daughter when she was little and mummy going Im so sorry I cant see you to get your award because I was flooding everywhere from my periods a bit of discomfort I will ask this person see how you feel being in my shoes...Or even now I cant tell anyone of the things Im going through because we know as lifespalette says its like a fog waiting in the shadows you cant just go Im free ....I still am unable to go in facebook its still to heartbreaking for me ..but I hope you come up with a design myself Im still going for the design you did from one of your wonderful students :)
J0KEYJ