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Appts in Philly & Mlke, allergic reaction, & more updates

Friday, May 25, 2012

I've been too out of it lately to do much for blogs, but I just took the time to write out a huge entry for Caring Bridge, so I'm going to share that will all of you instead of retyping it. There's more I'd like to say to all of you, but I don't want to waste energy and brain power trying to remember everything again and type it out here for you. So here you go; I can always add more another day.

Things have been quite busy and tiring here lately, which is why I haven't gotten around to an update. A lot has been happening, but much more is still in progress. Since my conditions are chronic and not curable, this is how things will be for many years to come. Some days all I can do is the bare minimum and I've had to learn to be okay with that. If it's too hard to do something on any one day, then I have to set it aside for another day when I have energy or I have to accept that it might never get done. Sometimes I'll choose to spend my energy putting me first - purposely resting to attempt to save up enough energy for tomorrow or even a week in the future. This means when I have something important to do, my life must be planned and structured around making those important things happen easier. This is more than writing lists and figuring out what days to do what - this is making choices about what/when to eat (or not eat to save myself pain and energy), purposely not doing something until I know I have energy I don't need for something else, and above all not letting others make demands on me that I'm unable to meet.

Right after I posted the last update I was approved for disability transportation. This means that I can call and have a small bus pick me up and take me anywhere I need to go. I have to plan at least a day in advance to make sure I can get the trip (calling the same day lowers the chance of getting a ride). The cost is minimal (about double a bus ticket) but that's a lot better than the cost of a cab or risking my health when I'm not able to drive myself (like for longer distances, in rush hour, when I'm not feeling well, or in bad weather). I've used it several times and they're wonderful. In addition, because disability rules are the same throughout the country, I can get transportation in any city in the US as long as I prove my eligibility ahead of time and show my MN ID. This means when I'm in Philadelphia I can have them drive me (and dad) around.

The new PICC was placed and within two days my arm started up a new allergic reaction. I'm on a prescription form of antihistamine (like Benadryl) to try to keep it under control this time. It been red, slightly swollen, and somewhat itchy for the 2 1/2 weeks it's been in. It's also weeping (fluid is coming out of my skin in attempt to protect it) which means I've been having the home nurses come twice a week to change the dressing - I don't want it to cause an infection! Each time they come we change what's going on my arm, removing most of what they use. We've changed the see-through plastic dressing (like what goes over an IV) to a more hypoallergenic type, stopped using any adhesive removers, skin protectants, skin cleansers, and a small piece that helps hold the end of the PICC in place. We've cut back on how much tape is on my skin and only use rubbing alcohol and Betadine to clean off the area. Still, it keeps reacting. It is looking a little better than it did just a week ago, so I'm really hoping it's stopping and the current itching is from it healing! Also, the nurses are just starting to use a new type of dressing made by 3M that's designed specifically for PICC lines with a special shape and notch plus comes with pre-cut pieces to hold the end of the PICC in place instead of tape. We put one on the inside of my forearm to see if I'll react to it. The allergic reaction has reached all the way there so if it looks better while under this then there's a chance the new dressing will be okay for me.

Last week was the trip to see my GI doctor. When I told him that the Ehlers Danlos is confirmed and Dysautonomia is suspected, it was like a light went off. Both conditions can cause GP, so there's a decent chance that those are what caused my GP, and since neither is curable there's a chance the GP is here to stay. Because of that, he emailed my primary doctor to tell her that if I keep having the allergic reaction around the PICC or gain the weight and lose it again when the PICC is eventually removed, the next step is to put me on a jejunostomy tube (feeding tube that goes into the small intestine). He'd prefer a nasal-jejunostomy tube, where they put the tube down your throat, but I explained to him that my sensitive esophagus and throat would cause me to have no ability to speak with that in there, so there's a possibility of having it immediately place through a hole in my abdomen. We'll have to see what happens the next few weeks.

Early this week I had my autonomic testing done in Milwaukee. The doctor needs to review the tests and he will give me the results next month when I go back. I can say that based on what the test administrator said I had some odd reactions. The most pronounce was during the tilt table test. I was loosely strapped to a table then raised up to just shy of vertical and then should have stayed there for 30 minutes. Unfortunately at 23 minutes in I started gasping for air until I couldn't breathe at all. She dropped the table right down again. Clearly standing nearly straight shouldn't cause a person to not be able to breathe! There were a few other tests, but the whole body sweat test couldn't be done because the powder that's used and the high heat and sweating could have caused serious problems or even an infection around my PICC line. They did a different type of sweat test though, where only 4 spots (1 arm, 2 leg, 1 foot) were used in an attempt to make the spots sweat using a neurotransmitter liquid and an electric current. All the tests were very bothersome to my body, but as is my normal fashion I was trying to crack up the tester and get her laughing. It made it easier because she could see that when my body freaked out it was physical reactions, not a panic attack - something many doctors and nurses have mistakenly thought.

The trip to Philly included the first time I've had to fly while on TPN. Considering I couldn't go through any machine and thus had to be patted down and that they had to test everything for bomb residue and review all of the supplies I had to take with (I took 1 bag in case there was problems with the hotel receiving the shipments of 2 days worth of bags and supplies) it wasn't as bad as it could have been. The flights were long and difficult (as usual) but were complicated more whenever someone tried to grab the backpack with my TPN to carry it for me or to try to stow it. Same thing with the cooler that had my extra TPN and supplies, as it wouldn't have taken much to puncture the bag and then I was screwed. Even so, the flights to/from Milwaukee were in some ways easier yet harder. On the way out we had a 5 seat, 2 engine plane and on the way back a 4 seat, 1 engine plane. On the way out we flew through a cold front (which made me incredibly sick) and landed through a thunderstorm that parted just long enough to let us land. On the way back we had to take off and land in high winds. Oh, and because of the testing that had to be done, I couldn't take any of my meds for 2-5 days (depending on the medication) before the tests, which meant no anti-nausea meds, PPIs or antihistamines during the flights back from Philly or going to Milwaukee! No fun for a person who can get nauseated just from turning their head!

I want to send out another thank you to my aunt, uncle, and cousins who were incredibly generous in opening up their home to me and dad, as well as driving us to and from the airport as well as lending us a car to go to the appointment. This was incredibly kind, so THANK YOU!

Also, I'd like to pass on a great big THANK YOU to the Lions and Lioness clubs in New Lisbon for hosting a fund raising event for me a few weeks back. It is greatly appreciated! Also thank you for everyone who stopped by and supported the efforts.

Something interesting I'd like to share before I wrap this up: one of the disability transport drivers has told me she thinks I'm incredible, an inspiration, and should be a motivational speaker. Talking with her and another rider I did what I could to cheer up their day while also sharing my story and how hard I'm working on being positive and motivating. After she said this to me though, I started getting tears in my eyes because of how huge of a compliment it is for me to hear that. I've had so many people over the years tell me I was negative and hateful and hurtful. I've been blamed for bringing others down and ruining their lives. I've been chided for not believing in myself and letting others walk all over me. So to have someone say that I made their day significantly brighter made me feel INCREDIBLE! Also, my favorite home nurse told me she thinks I should try my hand at writing a fictional novel. The fact that she believes in me and thinks I can do it feels great. The support I've been getting by a few amazing people who really believe in me really helps keep me going. Even more importantly, the support and positivity helps me better handle the stress I'm under and actually helps me to have better, healthier days. When I can have some relaxation time and have positive people around me to keep my spirits high, I can actually eat more and do more each day. It is really true that negative attitudes breed negative physical problems while positive attitudes are food for healthier bodies!

The doctor appointments are done for a little while (at least the major ones), though I still have plenty to do and plenty I'm working on. It will be nice to have a small breather (other than paying bills and working on all the paperwork I still need to get done). Honestly, I think working is easier than being on disability!

I hope everyone out there is having a great Memorial Day weekend! I'll be spending a lot of mine reading a book series and watching dvds rented for free from the library. One great thing about the library system here is the vast amount of free items they have for me to spend my time doing when I don't have the strength or energy to get off the couch. I'm definitely loving it!

  Member Comments About This Blog Post:

MISSCUS 5/29/2012 3:33AM

    Hi, glad you're okay, I sent you an email through spark.
Phyllis. emoticon

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AYLEA56 5/27/2012 7:53PM

    I am glad to hear from you as well. It is good to hear the positive things that are happening in your life. You deserve them and I hope things keep on improving for you as much as possible.

Happy Memorial Day Weekend! Hugs & Blessings!
emoticon emoticon emoticon

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LIVINHEALTHY9 5/26/2012 10:30PM

    It has been a while since you last blogged so it was good to find out what has been going on with you.
I am happy to hear things are falling into place for you and that you are doing better.

Have a good weekend!

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MOM2ACAT 5/26/2012 3:55PM

    I'm glad it sounds like your doctors are finally working together, hope they can get you to feeling as well as possible, so that you have more good days than bad.

Enjoy your weekend! I'm doing that too, reading and watching DVDs.

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New PICC causing problems, but it's gunna stay put

Thursday, May 10, 2012

Well, the PICC was placed on Monday and it's been a nightmare since. The first night I got less than an hour of sleep before I had to be on the transport at 6:30 in the morning to go to 2 doctor appointments that weren't worth it. The 2nd I couldn't even have because COBRA wasn't kicking in and the only way to see the doctor was to pay a few hundred dollars out of pocket then attempt to get COBRA to refund me. I'm broke so I couldn't. Thus I had to call the transport and get them to pick me up early. I cried so much through all of this. I talked to my customer service guy at my insurance company and he was finally able to get the COBRA straightened out for me... but it was after I had already been home a few hours. In the meantime the home nurse came out (unfortunately the same one that broke sterile protocol and got cat hair next to my PICC and caused the infection to blow up in my arm) to do a refresher course in hooking up the TPN. It's interesting how she was not following what I had been taught by other nurses, including she mixed my bag in a way that would cause air bubbles and told me to do it that way! Um, NO! So I'm thinking about asking that she not come back. But my favorite home nurse is coming out tomorrow to change the dressing around the PICC (definitely needed as I bled a bunch as I was holding myself up in the transport on the way from the hospital and again during the transports yesterday) and to draw blood. I look forward to seeing her again!

Then last night I tried to go to sleep around 11:30, but couldn't fall asleep. I think I had a little too much cheese with dinner, as I was holding down vomit for hours. I tried several medications my doctor has given me in attempts to fall asleep, but nothing worked. Finally around 5 am during a trip to the bathroom (TPN is causes frequent bathroom trips for me) just as I walked in my stomach started vomiting uncontrollably. Normally I just feel horribly sick and in severe pain instead of vomiting, but apparently it was just too much to handle this time combined with the last medication I took which tastes like death. It was around 8 hours after I had eaten and even without turning the lights on I could see hunks of food. Oh the joys of GP! It wasn't much - only a small portion of my dinner - but getting it out allowed me to FINALLY sleep about 5:30 am. I took several phone calls during the day before finally waking up at about 3 pm... only to realize I was supposed to change my bag in an hour and I hadn't gotten it out yet! (Should be out 6-8 hours to warm up before hooking it up.) So when the one bag ended I took a shower then hooked it up. It had warmed up for about 3 hours by then, so it wasn't going to be too bad.

All this blew my day of course, and I didn't get to make phone calls I should've made. So tomorrow I'm hoping to make a few phone calls, go to a movie (I just want to get out of the house for something other than doctor appointments!), then be back just before the nurse comes.

I know part of why I haven't been able to sleep is that I've been having chest pain from the PICC since it was placed on Monday. With my hypersensitivity, any movement of the PICC in the vein sends my body into a frenzy. So as I lie in bed and breathe, it slides it against the vein walls and my heart just freaks out and the chest pain jumps too. Nothing they'll be able to do, as it is placed correctly and they can't fix the hypersensitivity (of course some doctors tell me it's not possible - jerks) or the dysautonomia reactions to the hypersensitivity. So I just have to live with it for a month or two while I try to put the weight back on.

  Member Comments About This Blog Post:

3KIDSMA1 5/12/2012 6:03PM

  It will get better...stay strong!! emoticon

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AYLEA56 5/10/2012 7:06PM

    Hope tomorrow and the weekend are Good to You!
emoticon emoticon

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MOM2ACAT 5/10/2012 3:15PM

    emoticon Hope tomorrow is a better day.

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SIERRA551 5/10/2012 12:58PM

  Hang in there girl.

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I was accepted for disability transportation

Saturday, May 05, 2012

Just one quick update to share: As of today I've been approved for disability transportation. This means I don't have to worry about driving in traffic and then dealing with an appointment, long errand, etc also. I can drive now and again when I'm feeling relatively okay and only have a small errand to run, but the more I try to do the worse it is on me. Monday I'm getting my new PICC placed so not driving there and back will be best. Then Tuesday I have to be about a 20 min drive away first thing in the morning, and if I was driving it would be at least an hour in rush hour (if not an hour and a half!) whereas by taking the transport they can drive on the side of the road around traffic jams and I can somewhat relax instead of freaking out from traffic. Needless to say I'm looking forward to using it! I also found out by reading the paperwork that being accepted for it here in MN means I'm accepted to use it anywhere in the US. So when I fly to Philly or Milwaukee I can get transportation there too! Woot!

  Member Comments About This Blog Post:

CTUPTON 5/6/2012 3:10PM

    I understand how helpful that is! Way to go! And it's a d.....n good thing they did accept you, too! chris

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LADYPYE 5/6/2012 1:19PM

    I am so glad to hear that this has happened for you. It will be one less thing to worry about. emoticon

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SIERRA551 5/5/2012 9:38PM

  Good for you

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AYLEA56 5/5/2012 4:54PM

    That is Great! Plus I know it really does lessen your anxiety. I drive rarely now and I know the days I do have to drive my anxiety almost does me in.

So emoticon I am so glad you were approved for this.

Have a Great Day and I'll send prayers & blessings that your PICC does not give you any real problems this time. Also glad your home town did some fund raising for you. emoticon

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MOM2ACAT 5/5/2012 4:45PM

    That is awesome!

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KNEWMETODAY 5/5/2012 12:20AM


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May is going to be busy; and there was a fundraiser for me today!

Thursday, May 03, 2012

Well, I'm getting back on TPN next week. Monday they're putting the PICC back in. So I've got an appt to get a massage tomorrow. I'm also going to be taking some nice long showers before my appt on Mon because once the PICC is in I'll be back to few showers and nightmare problems with trying to get clean. Now that summer is nearing I'm going to be sweating like crazy whenever outside so let's hope my A/C doesn't go out - otherwise I'll certainly have more problems and have to have it pulled yet again!

Tues I did an appeal over the phone with my insurance company to try to get them to approve payment for the PPI I should be on. Their contract states they'll only pay for a PPI if you're under 12 or on a feeding tube. I was told that a PICC line counts as a feeding tube. Then I was told that when you're on a PICC you're not eating so you don't need a PPI. Well, I'm still eating a few hundred calories by mouth each day while on a feeding tube, so I called them out on attempting to break their contract. This was on top of making a pretty decent case for how desperately I need this medication. After about 15 minutes of non-stop talking I asked them to please reconsider and honor the contract, then asked if they had questions. What I heard was "Wow!" and "You really know what you're talking about!" so I'm hoping they will choose to give it to me.

In addition to getting the PICC placed next week, I've also got appointments with a Physiatrist (physical medicine doctor), my Dermatologist (the chilblains are trying to come back), and my therapist. The following week is a trip to Philly for my GI specialist and the week after is a trip to Milwaukee for testing for Dysautonomia. Such a busy month!

Lastly, I just want to share something nice that happened for me today. I currently live in the Twin Cities metro of MN, but I grew up in a small town in WI, where my parents and sister/BIL still live. The Lions and Lioness clubs there put on a brat and hot dog sale during lunch today as a fundraiser for a guy who has cancer but no insurance and for me, with the profits to be split in half. Some retirees even offered to drive food to the surrounding towns for places like the nearby military base (where my father and I used to work) and the school where my sister teaches, as well as nearby businesses. Hopefully it raised some decent money for this other guy and for me. They're also planning on a silent auction and additional fundraiser in June or July just for me. It's humbling to have people help like this. Being a small town there isn't a lot of people and few have money to throw around, but they also try to help each other. My dad was also telling me about the people who he's talked to since he's been back home and how some people are choosing to make anonymous donations or finding ways to give to my parents and me. I'm hoping it will help get me through a month or two, then with a little luck hopefully my long term disability will kick in.

  Member Comments About This Blog Post:

SIERRA551 5/6/2012 1:33PM

  Good for you.

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MOM2ACAT 5/4/2012 3:24PM

    That is awesome that people in your town are getting behind you to help!

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CTUPTON 5/4/2012 1:26PM


mystery diagnosis is the exact show i watched yesterday.

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CTUPTON 5/4/2012 1:22PM


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CTUPTON 5/4/2012 1:20PM

    On TV, the FIT channel, there is a show documenting rare illnesses. Have you seen the show? Chris

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I finally emailed the Ellen Show

Wednesday, April 25, 2012

I know I said months ago I wanted to ask Ellen for help. Unfortunately, every time I tried to sit down and write something I completely blanked on what I wanted to say. Yesterday when in the shower my mind broke the wall down and I came up with some ideas about what I wanted to say. So I stayed up into the early morning last night writing it out, changing it, adjusting it, adding and deleting, and I finally got it written. After a small change today I sent it about an hour ago. This is what I sent her:

I’m a 30 year old woman with 3 severe medical conditions: gastroparesis (partially paralyzed digestive system), Ehlers Danlos (genetic joint condition), and suspected dysautonomia (autonomic nervous system problem). I've been getting worse for the past few years; now the severity of my symptoms is preventing me from living the active life I once had. Yet through this journey I've found that being a positive person and inspiring others to make the best of life has helped brighten my days. There’s much I wish I could do to help others, but until I have the capability of volunteering again I am focusing on living by 2 mottos: “Every day is a chance to do a little better” and “Forgive yesterday, hope for tomorrow, do better today”. Just because I can’t be perfect doesn't mean I can’t do better! Your ability to share kindness and generosity has helped me smile and enjoy each day for the past 2 years and I’m grateful for that. I hope you'll be willing to share my mottos and maybe inspire more people as I continue the difficult journey I have ahead of me (no cures exist). Meanwhile, I have a goal of taking a long overdue vacation this fall with a few friends to Covington, GA, where one of our favorite tv shows is filmed. This is a lofty goal, but it keeps me focused on a positive future. I’m working on being physically able and hoping for a little help to afford the trip, as well as to repay my parents who have been funding the travel to my specialists. Please help me.

Of course, there's no guarantee that I'll stand out and that she'll be willing to help me, but I'm trying to be hopeful. Even if she doesn't, I'm proud of myself for FINALLY figuring out what to say. I could've asked her for a lot more, but I realized that I've been figuring out quite a few ways to get help from the government, the state, the county, etc. I haven't been able to fill out all the paperwork or do everything I need to do, but I'm slowly accomplishing little bits every day.

Since I got out of the hospital a week and a half ago I've been feeling very depressed and exhausted. I ended up in a bad place and started questioning why I was fighting so hard. Over the past 2-3 days I started pulling out of it and recommitting myself to do what I need to do. Today I talked to my health coach from my insurance company and as we finished our phone appointment she was saying such incredible things. She was saying how I'm very talkative and have a lot to say, much of it being the struggles and problems I've been dealing with, but I'm not complaining - I'm getting it out then talking about everything I've done to help myself and fight to get ahead. She said she's always amazed at how I keep focusing on what I can do and always asking questions to find out what other help I can get. It was great to hear her say all that. It also helped lift my spirits a little higher and gave me some energy I haven't had in so long. I even had the energy to do some light cleaning and straightening up around my living room, dining room, and kitchen. It wasn't much and isn't very noticeable if you didn't see me doing it, but it feels good to have gotten something done. It's even more incredible because I haven't slept well for several nights, I've had a little more pain than before (mainly head, neck, and abdomen), and I haven't been able to do any notable activity in several months. Hopefully it will help me sleep tonight!

Right now I'm relaxing on the couch a bit and reminding myself I can't take a nap. A friend is coming over in about a half hour (bringing her kids) to take me grocery shopping for a few necessary and sale items. (Perhaps the one positive of having a paralyzed digestive system and hardly being able to eat food is that my food expenses is much less than most people.) I'm going to ask her to take a very quick run to target for just a few items where I'll use a regular cart, then we'll go next door to the grocery store and I'll probably use an electric cart. While I was cleaning I kept saying I shouldn't waste the energy I had but I just couldn't stop! It shouldn't take too long so once I'm home and the food is put away I'll lay down and hopefully make it an early night.

With a little luck I'll have some energy again tomorrow as well as a little less fog in my brain so I can tackle the large stack of paperwork I need to get started on for all the aid I'm going to be asking for.

Thank you to all my wonderful sparkfriends who have been supporting me and I hope some of you have found a little inspiration from my mottos. I know it would be much more difficult for me to make it through each day and through each complication in my life if I didn't have the incredible support all of you have given me. THANK YOU!

  Member Comments About This Blog Post:

MISSCUS 4/30/2012 7:21PM

    Sorry I am responding later than usual. Your letter to Ellen sounded really good. Hopefully with your letter and mine her staff will take notice. Your spirit has remained optimistic and that is good. Hope you are doing good with the tpn and the picc site remains clear. I think about you every couple days, and everytime I watch the Ellen show, almost daily. I continue to hope and pray that you will get better.

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LUCIOUSKITTY 4/30/2012 2:34AM

    Hopefully you hear from Ellen and I really hope you have a better day tomorrow. :)

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CTUPTON 4/29/2012 10:55AM

    So sorry things are not going well. You do have plenty of sparkfriends who care for you. I hope you get enough real help to solve these medical problems. Praying right now that your message will get to people who can really help you out. The Lord does answer all prayers. -in His own time and in His own way. don't give up hope, please. chris emoticon emoticon

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AYLEA56 4/26/2012 6:22PM

    emoticon I am glad the words finally came to you and you were able to follow through. You wrote a nice letter and I hope you hear something soon. Best Wishes!

Thank You for Sharing and have a Good Day! emoticon emoticon emoticon


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MOM2ACAT 4/26/2012 4:45PM

    Very well written letter! I hope you get a positive response.

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LIVINHEALTHY9 4/26/2012 3:56PM

    Keeping my fingers crossed you get a response from Ellen.
Keep us posted.


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LADYPYE 4/25/2012 11:27PM

    Good luck. Tomorrow is always a brand new day. emoticon

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GINNY1215 4/25/2012 7:43PM

    Good luck with finding assistance and hopefully Ellen will give a positive response to your letter also. It never hurts to reach out and try. Keep up the positive spirit and best wishes to you. Hugs!

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