Hi Family and Friends-
I know, I know, I have told many of you this day would never come, but I was wrong, and here I am using precious time to write something no one may ever read. But with recent events I thought this might be a good way to keep everyone (who is interested) up to date, as I take this strange journey over the next few months.
First of all I want to apologize for those of you I haven't spoken with, honestly I just haven't had it in me. But I am doing better now, I just needed some time to process. So here is what is going on. Many of you have noticed the red spots on my legs before. It is a rare condition called necrobiosis. Over the years I have been to many specialist including The Mayo Clinic and The International Diabetes Center and no one could help me. There is no cure or research (because it is rare). The problem is sometimes those areas can become infected. My leg ulcerated with an infection around Halloween and the strongest antibiotics are doing nothing. I went back to the Doctor a week ago Wednesday and was told I could possibly loose my leg. The good news is, I have three great doctors and they have came up with an aggressive plan and they are certain it will work. In my heart I just know it is going to work. Monday I will start Hyperbaric Treatment for the next 8 weeks (possibly up to 12 weeks) five days a week, 3 hours a day. I will also have surgery next week. The picture above is what it looks like.
So let me tell you a little about the chamber and then let me tell you how you all could help me. Basically the chamber will pressurize and gradually they will take me down where it will equivalent to being 33 feet below sea level. I will need to continually be popping my ears for the first 15 minutes, then I will feel totally normal except my voice will sound like I am sucking helium. Then I just lay there. I can not have anything with me (like paper, cell phone, book) and I can not have any makeup, lotion, hairspray etc, because I will be in 100% oxygen which is very flammable. I can watch a movie on a screen attached to the tube, but as you know, I'm not a huge movie person, and I never sit still for longer than a half an hour. So the goal for me is to stay calm and not get claustrophobic (once the lid is closed, they can not open it till I am done, or it will cause severe lung damage).
Alright so here is what I need from you. A greater purpose to all this craziness. For every hour I lay in the tube (3 a day), I am asking for a donation of 5 minutes of exercise from each of you (Parents, Siblings, in-laws, friends, strangers). I know it seems a little manipulative, but if I start feeling "crazy in the tube" I know I can calm myself thinking of you all exercising. The exercise can be anything you want and as light as it needs to be, just make sure it is healthy for you. It can be a short walk. Lifting small weights (even from the recliner), Tai Chi for those of you in the 60 and older category. Yoga for my high stressed Sister-n-laws, and something neck friendly for my sister. Tim and Rob, two words...Billy Blanks (Ruth will enjoy BB's tight pants). I am also asking my friends to sign up as well. Remember start light, it might be a long 12 weeks. Oh and I will be exercising each day as well. Ever since I had this idea, I have totally calmed down about everything. So think about it and respond to this post if you can help me out. I will send an email out to you all when that is up.
I love you all!
Amy
Hey Amy this is Kaity!
ReplyDeleteI start spinning tomorrow...so you can imagine me getting all sweaty on a stationary bicycle :)I love you!
Hey it's Ruthy, You definitely motivated me to get off my fat hiney! You can count on me; I'll do anything for you sister! Love you, Ruthy Pearl
ReplyDeleteHi its Cayson, I hope you feel better soon.I love you alot, bye
ReplyDeleteHey! its Jaxon here, i currently got on the basketball team and to let u know my basketball coach makes us run more than i have ran in my whole life! even more than my track team! kids on my team are constantly barfing because of how much we run! we do that for about 2 hours! ill be thinking of u every second i run and every time i barf. i really really hope u feel better. LOVE, Jaxon
ReplyDeleteHey Amy! Yoga is a great plan, especially since the treadmill is no longer treading! You are the most selfless person that I know, thinking of ways to help others while you are going through your own trial. I will be thinking of you as I ummmmmm my way to bliss, and I will actually be saying Ammmmmmee! I truly know that you will be okay, you are a very strong willed, strong spirited woman. I love you - Steph
ReplyDeleteHey it's Cayson again! Everyday i have to go to my gym exercise a TON. i feel really bad bad you have to go through this. For these next 8 weeks (possibly twelve) I will be thinking of you, love you ALOT,cayson.
ReplyDeleteAmy! We are on board. I have been thinking about you so much lately and will continue to pray for your strength. YOu are so inspiring to others even at the most difficult times it's no wonder why i've always looked up to you for so long and love being with you when we get a chance. We love you guys!!!
ReplyDelete"No spell check??" Well, as your greatgrandma Towne used to say "The Begining Is Half Over". As I told you ealier today dad was on our treadmill this afternoon. He did not over do it and I followed him a little later. I always have a prayer in my heart for all of my children. Isn`t it a miracle that you, this technology and your Dr.s that you are so happy with and "THE TUBE" all came together in Bend, Oregon at this time. Prayers are flying out there everywhere for you to maintain your strength both physically and emotionally. Yes, Shutdown is over at the Temple so we go back to our regular schedules tomorrow night, thank goodness! There are so many that are going to be sooo surprised when they go back to the Temple. We love you so much!! We know you are going to make some new friends during this experience and this is going give them help that maybe they did not even know about. We love you very much, Mom & Dad
ReplyDeleteHi Amy! It's Kay's friend, Dida. (Candida) Even though we haven't met, I feel like I know you and your family a bit, and are more than glad to move for you while you have the need to lie so still in "The Tube". What a wonderful person you are to share this experience with others, while giving them the opportunity to grow through your trials (Hopefully we will do some 'shrinking' too.) I am so glad that your mom sent me the link to your blog, and I admire your bravery and faith. You are and will be in the prayers and thoughts of many special family members and friends who are all here to say "Let's get moving for Amy"!!! Love, Dida
ReplyDelete"It`s terribly amusing how many different climates of feeling one can go through in a day"
ReplyDelete--ANNE MORROW LINDBERGH
Hi Honey Bunn I just wanted you to know how proud I am of you and what a good exampile you are to every one you come in contact with. You make me so proud just to say you are my daughter.I know like everything else you do, you will give it a 110%, and will win in the end.Even though I am not there, i'll be next to you in spirt. remember in the good and the bad and the ugly and the pretty I will not only be your father but your dad and friend
ReplyDeleteLove Dad
Hello Amy, It's Lisa your cousin. I hope you don't mind me joining your journey. I have been a nurse for twenty years and have seen about 75 residents with this very same skin disease. Three where not even diabetics. With the proper diagnosis and good Drs. the prognosis is very very good. It sounds like your over the frustrating part and now you get to hurry up and wait. I have enclosed a few support groups for necrobiosis if you should ever wish to talk to other people who have gone or are going through what you are. Some times it helps to know what to expect or at least have a sense of power. This is a good start. I hope it helps. There are really no good sites as far as info goes. It all says the same thing. You probably already know this though.
ReplyDeleteThe sites are:
www.everydayhealth.com/CS/forums/344972/ShowThread.aspx#344972
Skinpatient.com ---If you cant find your web support group here please email us (Skinpatient.com) we will move heaven and earth to find you one however if there is not one on earth why don't you start one we will help you out in any possible way. This is one I give to alot of my patients, it has alot of good info and has empowered alot of people which in turned has helped many others. If nothing else it might help keep the hope when your feeling low.
I will add 2 sets of 15 reps to Danny's morning stretches for his joints. It usually turns in to a big tickle feast at the end, Ricky my oldest son and I will walk two extra times around the block and I will up the stakes on the Wii fit and have Rich ( my husband) try for 1500 on the hoola hoop. This is really just because it makes me laugh to see a full grow man swirl around a pretend hoola hoop, but ha it can hurt either. LOL. I hope all has gone well so far and Please know I am thinking about you. It will be interesting to see where God takes you on this journey you've started. Sounds odd to say but after starting my own journey with Danny's JRA and the people it has taken me to or who have been sent to me if even for no longer than a phone call has been life altering. You are not alone when it comes to rare diseases. I have only found 1 other child in this area with RA and Danny does not want any thing to do with her because she's a girl. He's only 7. Every time I reach out for answers I end up helping some one else instead. I have a feeling you will be the same way. It's not bad thing. I hope you find your journey to be the same.
Well good luck and please keep us posted. Love YA
Lisa
Hi Amy! You always make me smile, even when you're working through tough stuff - your blog name sure caught my attention. Count me in...I'll be trying the treadmill. I'll look forward to future posts on your blog.
ReplyDeleteGood evening,
ReplyDeleteThe boys and I have just finished our walk, 5 times around the block = 1 mile in 20 minutes. This was great for us. It is 29 degrees out side and very foggy. I did not think Danny would make it the last time around the block, but he did. It will be easier when it is not so cold and wet outside. Thanks for the inspiration.
Love you Lisa
Hey Amy,
ReplyDeleteJust checking in. Im about to go get on my recumbant bike for 20 minutes. Does walking around Walmart count?? I wish it was good outside but the air quality is the worst in the United States. (Thanks to all my boys with gas problems.)JK. Anyway, I will be thinking of you in your fancy bed chamber. If you can talk in there, maybe it would be a good time for you to practice your opera singing voice.
Love you so much,
Cyndy
Amy...I hope your surgery went well cleaning up the infection on your leg. I have tried to let Hailey & Sierra understand what it is like to not be able to do anything for 3 hours!!! Hailey said she can just watch cartoons! probably true since I am such an awesome mom & never let them watch tv all day (if you believe that you don't know me... tv babysitter OOOH YEAH)...but I truly hope you are doing well & taking care of AMY!!!!
ReplyDeleteHunter said he would run around the track at school an extra time for you! I am going to pledge to do sit ups & leg lifts?? get rid of some of that baby fat (from the past 4 kids & 7 years)...
If you don't know Grandma Wheeler has been riding her "bike" since she heard & thinks of you as she peddles away!
Well we love you tons sorry for the long comment...but you are worth it.....................My bro has an amazing wife & best friend in you!! (in case you didn't know how he feels)!!!
Love ya tons
CAT
Hi, Thank you so much for the beautiful pictures of the trip to the coast. We loved all of the pictures, but mine was the one of you all with the sun going down on the Pacific Ocean behind all of you. I made it my background on my screen and it is great. Congradulations Luke for your Gold Key Award for Central Oregon Scholastic Art Awards. We would love to see them all. I miss you buddy!! The Doc. said I can get back on the treadmill Tuesday and I am determined!! All of our love, Mom & Dad
ReplyDeleteWell hello, I guess this is as good of time then any to stop by and say hello. OOOO yeah, I forgot this is Jeff. Hey my wife Mandi is a RN and She works for a correctional facility. Many of her inmates are diabetic She has had to do a lot with them. We also have a friend that is a Doctor and this is his specialty. Diabetics that is. Well so some research and see if we can also find some useful info for you. Take care and stay strong. Jeff and family
ReplyDeleteHi Amy,
ReplyDeleteI hope your week goes well. take care!!
hugs and kisses,
Cyn
Hi Amy:
ReplyDeleteI live in Ontario, and I'm your mom's long lost cousin. Well, I wasn't lost, I knew where I was, but I didn't know where your mom was, so it's been years since we talked. Boy, do we have a lot of catching up to do. Anyway, your mom gave me the link to your leg-blog. If I remember right, she said this started around an old war wound that you got when you tripped over a sprinkler. Guess we must be related. My youngest daughter tripped over a sprinkler when she was in kindergarten, landed on her knee on the ashpalt driveway and had to have stitches. I'm such a big baby, when we took her in to get the atitches out, they made me leave the room because I nearly passed out. She, on the other hand, was a big brave kid and didn't even cry. Maybe one of these days we can have a big Towne Family Reunion. Hope your big glass tube experience will soon be a distant memory.
Theresa
Hi Amy, Your Mom's friend Candida (Dida) again. I've been in San Francisco for a few days and until Thursday, but getting lots of exercise for you. Glad your surgery went well. Ouch! That's a painful one! But your mom says you are being very brave about it all. Glad to hear that our moving is helping handle your lying still. More than glad to help in any way I can. Keep hanging in there, and we'll keep doing our part.
ReplyDeleteLove, Dida
"Todays mighty oak is merely yesterdays little nut that managed to hold its ground" I think that pretty well sums you up!! You will always be my "little nut".
ReplyDeleteAmy!!! You will be in my thoughts as I run/lift weights at the Y. You truly are inspiring and I'm so glad we found each other again.
ReplyDeleteLove you--Lani
P.S. if you need a great movie to watch while you are in the tube I would recommend Fireproof--just ignore the cheesy parts, it has the most wonderful message and is inspirational.
Amy - You know I love you! I just found your blog and I am praying for you. - If they allowed you a phone while in "the tube" you know I could talk you through the time in there! I do miss you and wish you all the best.
ReplyDeleteTyler is praying for you too!
Hi Amy, This is Annette Burke, we now live in Spokane, WA, and I was forward about your blog from friends and family in WI. I just gave birth to twins, so we now have 3 girls and 1 boy. I will think of you as I go walking everyday to lose the weight that I gained while I was preganet.
ReplyDeleteYou will be in our prays.
I agree with Lani that Fireproof is a great movie to watch while in there. We enjoyed it.
Annette Burke and Family,
Amy, My heart wrenched when I heard of your ordeal. Tears came easily. I can't even imagine this!! Your are and have always been such an inspiration to me and my whole family. We love you.... and your family!! We miss you! Just a note: I was climbing the stairs in my home and was thinking..... if I would be exercising these stairs would be easier to climb.......I wonder if I can get a group together, so I stay motivated. I was on my way to the computer, I opened my e-mail and there was your story. I couldn't believe it!!..... I'm motivated !!! I've already done two days of 15 minutes and plan to go the whole stretch. Hopefully by then it will be a good habit. Hugs and many prayers, and much love, Amy ........ Linda (60 and over group)
ReplyDeleteAmy,
ReplyDeleteGood Afternoon my Mom Linda from the Hudson Ward, told me about your blog and how you are asking people to donate time in excercise.
I was telling my mom how I wanted to get back into excercising and she told me about you and what is happening.
I just want to let you know that I will be there with you every step of the way with the excercise.
I excercised 20 mins. today with yoga and will get some walking in later on today after work.
I hope that everything is going well for you. And you will be in my families prayer.
Sincerely,
Aimee Telford
Amy,
ReplyDeleteOkay so I shouldn't talk while writing a blog,cause it just messes up my spelling. I didn't get my walking in today, but I did get 5 mins of lifting weights.
Have a Great night.
Sincerely,
Aimee T.
Amy,You are wonderful.Ican't say how much you have inspired me not only to walk more at the Burg, but to eat less and keep moving. You are so speacial to us all keep smiling that great smile, take care do not over so, wish I could do more, loves and hugs and prays mom Sue
ReplyDeleteAmy
ReplyDeleteI did really well the first couple of weeks,... then.... but back on track today. Guess who will be walking with me at least one day a week? Sherri P. ! Haven't told her about you yet, but I will. Tarl and Aimee are in S.F., CA. Tarl won a game design contest. So I'm sure they'll do plenty of walking around the city. So glad to hear you are healing and almost through with this ordeal. You are surely where you need to be it sounds like. So glad we had you here for a little while. We are all so blessed with the Lord's tender mercies each and every day. Without Him we are nothing or can do nothing. He is our strength and comfort.
Love you
Linda
Love and hugs
Linda
Amy,
ReplyDeleteYou've been a great help to me in my time of need and I'm going to help you by exercising every day for 15 mins and I've also been losing weight so that my health can improve. I've cut a lot of sugar out of my diet and I feel better already. My mom had me read about what happened to you tears came and I know that you wouldn't want me to cry. But that's what I'm doing now as I'm writing this. I just love you so much and miss getting hugs from you on Sunday's , if I could I'd give you a big hug now, I would. I will focus on you while I exercise and pray for you too.
Love You
Michelle
Also Big Sunday HUGS : - )
Good Morning Amy,
ReplyDeleteThis is Aimee from Chaska MN. I think my mom told you I was going to San Fran last week. Well let my tell you I got lots of miles in except Thursday.
I hope things are going well for you. I will let you know of today's exercise.
Sorry it's been awhile since I last wrote on here.
Have a Great Day and Take Care of Yourself.
Sincerely,
Aimee T.
Amy,
ReplyDeleteAll right, I just got done doing a two mile thirty min. walk.
I've gotta go for now, to get ready for work.
I'll talk to you later.
Have a good one.
Sincerely,
Aimee T
Good Afternoon Amy,
ReplyDeleteHope that your having a good day.
I just did a two mile thirty min. walk.
Gotta get going, I've gotta get ready to work.
Sincerely,
Aimee T
Amy,
ReplyDeleteSorry I didn't write yesterday. But I did do a 2 mile 30 min. walk.
Hope that your doing well, have a great day.
After I do my excercise today I will write again.
Sincerely,
Aimee T.
Good Afternoon Amy,
ReplyDeleteWell I just got done doing a 30 min. 2 mile walk, I also did 15 mins. of weights and strech bands.
I hope that you are enjoying each moment of the day today.
Have a Great One!!!
Sincerely,
Aimee T.
Hi Amy
ReplyDeleteI told my dear friend, Barb about you. She was the friend that helped us find the Gospel. She has a friend who has had many health difficulties. She was going to show her your blog. You are affecting us all!! I'm still doing good. I miss a day here and there, but for the most part I'm on track. The weather kept Sherri and me from walking this week, but we're on for next week again. I've been listening to BYU radio archives with their special talks while I'm "in house" exercise walking... so I'm exercising my mind as well. Now if I can just get control of my appetite, I'll be okay. Soon this will be behind you, Amy. I love you.
Linda