This is the story of a girl named Jenn, who makes living with chronic illness look easy

11 years ago

2010-12-17T22:58:00.000-08:00

Eleven years ago today a beautiful baby boy was born. His name is Cody Dylan Kyle. My nephew. I have rarely put into words how the life of this boy has changed mine forever and will continue to have a profound effect on me.

My sister and I were pregnant at the same time. I had Olivia on August the 3rd. After a very hard pregnancy and scary time afterward. We anticipated Cody's arrival very much! How exciting to have cousins so close together. I knew they would be wonderful friends.

Cody was due on January 1 but Krista was going to be induced on the 21st of December. Cody had other ideas and came on his own on the 18th. Weighing in at 10lbs 8oz. A big beautiful boy! I remember waiting to get the pictures and could hardly believe it! My little 8lb 3 oz baby looked so small in comparison!

We planned a trip home in February for my mom's birthday. We planned to go to the zoo and to get a family picture made. I had just recently bought a car and got my license after not driving for over 10 years. We made a stop in Charleston to visit my grandmother. I know surely now that God had His hand in all of this.

We had only been at my grandmother's house for about an hour when we got the call that would forever change our family. Cody had passed away. I can remember talking to my mom, I even remember talking to my sister and telling her over and over that I did not know what to say to her. I remember calling Harvey and not being able to get ahold of him. I remember dialing the phone to call my friends back home in NC. I needed people praying and supporting us because I did not know how I was going to make it through this. This was something that happened to other people. Not to us.

It was in the middle of all of this that I realized that in making the trip to Atlanta I was bringing a baby with me, Olivia. There was no way I could take her to my sister's house. My grandmother had just finished a round of chemo and as much as she wanted to go with me she just was not up to making the trip. So after much debate we decided it best for me to spend the night with my gran and then go to Atlanta the next day. I can tell you I had driven that trip many times in the days prior to all of this but it was the longest trip I have ever taken. I got lost, I felt like I was driving through quicksand when all I wanted to do was get to my sister so I could just hold her in my arms.

I finally arrived and went straight to my mother's house. I had to get the girls settled and wait for Harvey to get there so I could go alone to my sister. I did not want to take the girls, especially Olivia, to her house and inflict more pain on her. I called the house and Tony insisted that we come right then and I told him that until I heard it from my sister I would not bring Olivia there. The phone rang just a few minutes later and Krista told me to come. So I went dreading walking into the house with my precious baby and doing more damage than good.

I can remember getting to the house, and just getting to my sister. This is one of those things that until you are in the middle of it, you do not know how to act. I knew that people were praying for me. I knew I had to be strong for her and so I was. We hugged, we cried, I listened to her as she wept for her precious Cody. I managed to hold it together and was strong for her. All until I came downstairs and saw olivia playing happily on the floor with my BIL. Then I came unglued. How unfair was all of this? How would we survive this? Why did this happen???

Somehow we managed to get through the next few days, I remember standing with my mom and sister at a flower shop (A Daisy A Day in Snellville, and every time I drive by I think of that day) picking out a funeral spray for a tiny casket. I remember people calling and coming with food, I remember refusing to let Olivia be put in Cody's swing, I remember my dad coming for the funeral. I remember being at the funeral home thinking that this was all a bad dream that we would wake up from. I remember feeling horribly guilty. Guilty for having a baby that was still alive while my sister was laying hers to rest in a cemetery.

In the years that have followed there has been great sadness and great joy for our family. I walk a very thin line a lot of days when I look at my beautiful Olivia Grace and think of the things that Cody would be doing. Her first birthday was possible one of the hardest days of my life. Her first day of school. All of the milestones ya know? Or just some of the regular things like what would he look like, what would he be into, would he play sports or an instrument? I wonder if he would know how cool his Aunt Jenn is?

I have a lot of lessons that I learned along the way since that day in February that I am most thankful for. Among them, learning that friends who are there for you NO MATTER WHAT are a true blessing, family is so very important, and that God will carry you through no matter what. I still carry a verse that Cliff Easter gave me in those dark days (Romans 8:27) that even when I do not know what to pray that the Holy Spirit is there to intercede on my behalf, I have learned that God knows when I am angry and can handle it. There were many days that I would get in my car all by myself and just scream at God. He is big and He can handle my anger and sadness.

So every year on December 18th I get a little sad when I think about Cody's birthday, and I think about how AWESOME a nephew he would be, but I KNOW God has a plan and it is bigger than anything I can put together. I know that my sister aches on this day and all the days since Cody left us. And I thank God for letting us borrow Cody if even for a short time. In his short little life I know he changed ours forever. Happy Birthday Cody Wody! We love you and we miss you SO very much.

Love & Kisses,

Aunt Jenn

PS. Emma reminded me of something that I indeed must share. On our long trip to Atlanta I asked Emma what she thought Cody was doing in heaven with God that day. I was not prepared for her profound answer (she had just turned 6 in October, you know out of the mouthes of babes). Without missing a beat she said, "I think he is painting rainbows with God," so after I pulled myself together I thought how cool is that? We looked for rainbows at every turn, we never saw any until the day of Olivia's first birthday party. After her party we were going to take the kids to the movies and on the way there it got kind of nasty weather wise, so we came home and when we got out of the car there was a HUGE rainbow. It was my sign that Cody was with us and God was letting me know that it was okay. So now when ever we see a rainbow, I say hey Cody is sending us a rainbow!

What a difference a year makes

2010-11-24T05:21:00.000-08:00

Wow! What a difference a year makes! This time last year I was packing my suitcase and getting ready to fly off to New Jersey for who knew how long to see doctors at Jefferson. It is good to take inventory and see how far I have come. You should try it too!

A year ago I walked with a cane, and unless I absolutely need it (like at a Braves Game or if we are walking far, or if I am having a VERY bad day and would rather not fall)

A year ago I had a misdiagnosis, now we know what it is and how to treat it (but now I wait until we have insurance to get it!)

A year ago I weighed 44lbs more while I am great with that I have some more work to do.

A year ago I had VERY short hair that was a different color!

A year ago I was a very scared girl (2 Timothy 1:7)

A year ago I did not have my nose pierced!

A year ago my dad was still alive. I miss him

A year ago I had a boss. I miss him.

A year ago I did not realize what a powerful woman I am.

A year ago I could never imagined how different my life would be, how the people in my life have made such a difference. Friends old and new, family & co-workers They keep me laughing, wipe my tears (which there have been many of over the last year), keep me sane and love me unconditionally. For that I am so grateful.

Thankful

2010-11-23T17:51:00.000-08:00

I know that this time of the year brings out the "thankfuls" and most people move past Thanksgiving and that is it. I am thankful every day, or at least I try to be. So in no particular order I am gonna list out my thankfuls in no particular order...if I miss something or someone, please let me know!

*Music-I would be lost without it.

*My family

*My job & the people who I walk beside in ministry-I am blessed beyond measure

*Fuzzy pants-'nuff said

*Face Book-I know it's shallow, but I have managed to reconnect and keep up with people I love

*God's provision-my husband has been out of work since February, God is good

*Justin Melton-he has added so much not only to our church but to my life. I know that sounds cheesy but it is oh so true

*My sister from another mister, Melia who has managed to keep me somewhat sane in what has been an upside down year for me.

*My sister-who walked with me through one of the most difficult journeys of our lives.

*My dad-even though we did not have the best relationship, he was my dad. I miss him a lot

*My scrappy friends who recharge me once a month

*My mom

*weight loss...42lbs down & apparently I need to lose another 38lbs to be "ideal"

*Photography

*comfy shoes

*not so comfy shoes

*people who encourage me to not be so hard on myself

*inside jokes

*Good food

*being comfortable in my skin for the first time in a very long time

*good things

*bad things that make me stronger and wiser

*forgiveness for myself and for others

*laughter-which I do a lot of thanks to good friends, I have some funny people in my life!

*tears-which I do a lot of because I am a weeper!

*life

*death-that sounds so strange as something to be thankful for but it makes me realize that life is short and we should dance more, laugh more and not take things for granted

*my mac

*being witness to great miracles in the form of a little boy named Trey

*love

*a rockin pink coat

*a Braves coat that is special to me in many ways

*a great season from my beloved boys of summer

*a road trip with my sister and a night at the beach

*someone who taught me more about myself in a year than I had known in all the years previous

*chronic illness that has not defined me but refined me. It has taught me to really appreciate the good days because they are few and far between

*giggling with my kids

*sharing secrets with Emma

*roses in November

*chocolate

*my cell phone and learning how to text...but not texting and driving (Justin Melton)

*my contour pillow

*getting my nails done and feeling pretty

*Jasmine's Rabbit

*my ipod-I would be lost without it.

*being able to wear cute clothes

*Kathy, Melody & Melia who love me with no judgement

*knowing who my real friends are and who has my back

*finally getting my groove back. Now maybe my mojo will return and I can get back to creating beauty.

*Change whether I like it or not, it is inevitable

*for learning to filter (Justin Melton has seen me do it-it is possible)

*for fun

*Learning that I am strong woman

I could go on and on but for now these are my thankfuls. Now that I am back in a groove maybe you will hear from me more often on my blog!

xoxo

Jenn

Things You May or May Not Know...

2010-09-04T23:19:00.000-07:00

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW

1. The illness I live with is: Mystenia Gravis (Grave Muscle Disease) & Diabetes
2. I was diagnosed with it in the year: MG 2009, Diabetes 1999
3. But I had symptoms since: the early 90's
4. The biggest adjustment I’ve had to make is: not being as active as I once was
5. Most people assume: because I look great that I am no longer sick, which is not the case
6. The hardest part about mornings are: Getting up and getting ready for work
7. My favorite medical TV show is: House & Grey's Anatomy
8. A gadget I couldn’t live without is: my computer or my ipod
9. The hardest part about nights are: not being able to get comfortable enough to sleep
10. Each day I take _10_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: think if it works that is fabulous but it is costly and not covered by insurance
12. If I had to choose between an invisible illness or visible I would choose: this is a hard question to answer
13. Regarding working and career: I am blessed to still be able to work and have people who understand that I am sick. I love my job.
14. People would be surprised to know: how much pain I am really in ALL the time.
15. The hardest thing to accept about my new reality has been: how much time I spend in bed.
16. Something I never thought I could do with my illness that I did was: get on a plane and fly to Philly
17. The commercials about my illness: There are none.
18. Something I really miss doing since I was diagnosed is: just being able to go go go all the time
19. It was really hard to have to give up: the idea that I may ever be healthy again, because there is treatment for my diseases but no cure for them.
20. A new hobby I have taken up since my diagnosis is: blogging, although I have not done so in awhile. I have not had much to say, or the energy to say it.
21. If I could have one day of feeling normal again I would: hop in my car and take a road trip
22. My illness has taught me: nothing in this life is guaranteed
23. Want to know a secret? One thing people say that gets under my skin is: Wow, you look fabulous you must be feeling better.
24. But I love it when people: tell me that they are praying for me or when they help me do things.
25. My favorite motto, scripture, quote that gets me through tough times is:

1 Peter 5:10 (this is one of many) And the God of all grace, who called you to HIS eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.

Isaiah 41:10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

Romans 12:12 Be JOYFUL in hope, patient in affliction, faithful in prayer.

26. When someone is diagnosed I’d like to tell them: it is not the end of the world, it is just a new normal.
27. Something that has surprised me about living with an illness is: how truly painful pain is
28. The nicest thing someone did for me when I wasn’t feeling well was: there are so many.
29. I’m involved with Invisible Illness Week because: I want others to know about Invisible Illness
30. The fact that you read this list makes me feel: like you are listening and maybe learning a little bit more about Invisible Illness.

My friend Trey

2010-04-20T04:04:00.000-07:00

http://www.cbsatlanta.com/video/23202568/index.html

My friend Trey is a star! Not that I did not already know that but now everyone else does! They featured him in a story last night on our local news channel. Go check it out. I got to hang out with this good looking guy daily for almost three months. Be jealous!

Love, Jenn

An open letter to my peeps

2010-04-16T20:55:00.000-07:00

In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me before you judge me. Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit or call me on the ’phone sometimes I probably don't seem like much fun. But I'm still me - stuck inside a body which doesn’t work as it should.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for nearly 3 years now. I can't be miserable all the time - In fact, I work hard at not being miserable.

So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy! I am merely coping. I am sounding happy and trying to look normal.

Please understand that being able to walk or perform normal every day tasks sometimes doesn't necessarily mean that I can walk or perform normal everyday tasks all the time. Just because I managed to walk or perform normal everyday tasks yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please understand that a chronic health condition is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying or even thinking; "But you did it before!" or Oh, come on, I know you can do this! If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me a lot worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it may frustrate me to tears, and is not correct - if I was capable of doing some things, any or all of the time, don't you know that I would? I am doing everything I can to manage the situation.

Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic health conditions can affect the whole body, Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense and long. You can't always read it on my face or in my body language. Also, chronic health conditions may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to stand up/sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now – it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. A chronic health condition does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it – then so have I! In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower.

If there were something that cured, or even helped people with my form of chronic health condition, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic illness. If something worked, we would KNOW. It's definitely not for lack of trying.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. A chronic health condition is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.

Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to understand in general.

In many ways I depend on you - people who are not sick. I need you to keep praying for me and asking me how I am doing. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss although I fully intend to undertake them again, just as soon as I am able.

Thank you for listening. It really does mean a lot.

Love, Jenn

So I have somethings to say...

2010-04-15T19:13:00.000-07:00

So I have not had anything to say in awhile so I took a blogging break. No point in forcing it or having a blog about nothing (although Seinfeld was a WHOLE show about nothing!). Well, now I have some things to say...

First of all, as always I appreciate your prayers and kind words more than you know.

Since I last blogged, Harvey lost his job and I am without insurance AGAIN. Can I just tell you that I am SO over that. I need to see a doctor but with no money and no insurance I am just stuck. I was supposed to have an appointment at the end of March with a doctor at Emory. Now that is on hold until we are back to the land of the employed and insured. The way it looks right now, that could be a long time.

I am still not feeling good. I am still not sleeping well at night. I am still in constant pain. I am now having new symptoms. I get the shakes in my hands, and I feel like someone is tasing me from time to time in different areas of my body. I still tire easily. I am a 40 year old woman who should be having the best time of her life and well, that just is not happening. It sucks.

I have lost about 30lbs since I started on the macro diet. It has been a good thing. I am human and I cheat every once in awhile (boy do I pay for that!) but for the most part it has gone well. I eat well. That is one thing people kind of think because I am on a special diet that I am eating cardboard and nothing that tastes good. Far from it. Tonight I had some fish, roasted yellow carrots with Rosemary & Thyme, brown rice and a spinach salad. It was delish and my plate always looks beautiful. it has become a lifestyle and it makes me think about what I am putting in my body and how I cook and what I buy. I am looking forward to a new Farmer's market coming to a local town this summer. Yay!

I do have something to say though. While I have lost weight and I am letting my hair grow out (that could be a blog all on it's own!) people keep telling me how great I look. I appreciate that. I really do. But I wish my inside matched up with the outside. It is really hard for people to believe that I am still a very sick chick. I am still walking without my cane...yeah some days that is easy and some days like today, my feet do not want to cooperate and I trip easily or my knee gives out. It is hard for me to do the simplest tasks. I hurt all over. Having an invisible illness (or in my case two of them) is HARD and just because you cannot see my sickness does not mean it is not there.

Over spring break both of my girls went to Florida on separate trips. Harvey and I decided to go to a Braves game. Go Braves! First game of the season for us and they won! But, I digress. Our seats were in the outfield pavilion, which is almost right inside the gate, we parked in the blue lot which is about two blocks away. We had a blast at the game but I spent three days in bed recovering. I should not have to do that. That is what I am dealing with.

I am trying hard not to put on my fake it til you make it smile. But I do not want to be Debbie Downer all the time either. Those who know me well know when I am lying and call me on it and I appreciate that too. It is just really hard when someone asks me how I am. I do not want to be THAT person that complains, whines and is all woe is me.

I have joy, I laugh a lot, I can be quite silly. I sing, I praise even in the midst of this storm. I know there are people who have it worse than me. I am thankful I can get out of bed and do the things that I do. I have great friends and family who love me. I am blessed.

Just somethings I wanted to say.

Love,
Jenn

Taking a blogging break

2010-02-20T12:32:00.000-08:00

Hey there! I know it has been awhile since I last updated and to be honest there is not a whole lot to update. So I think I am going to take a break from the blogging for awhile.

Harvey lost his job yesterday so I am now without helath insurance and will have to wait to see if they offer us COBRA. Which means I could be back at square one with getting in at Emory. I am more than frustrated with that whole thing.

I appreciate all your prayers and concern and ask that you keep praying for me. I will update the blog when I have something to update with.

Love, Jenn

An update of sorts...

2010-01-28T13:14:00.000-08:00

Well, lots of folks have asked and I have not updated the blog lately so here it is!

I finally got someone on the phone at Emory after four attempts. The earliest they can get me in is the end of March. So more waiting. My FAVORITE~NOT! They do have me wait listed so I will hope that someone has to cancel. I will be seeing Dr. Linton Hopkins who has been at Emory for 35 years and specializes in neuromuscular disease. I have to get a referral from my doctor and that was like pulling teeth the last time so pray that it will go easier this time.

A lot of people have asked about me going by Jenn...there is no real story here. Jennifer is my given name, Jenn has been the name I went by for almost 30 years. Jiggy is a nick name I acquired and I used her as a mask to be fake and put her on as my fake it til you make it persona. I have decided that it was time for her to go. It was time to return to the real me. Jenn. So really that is the only reason and I appreciate the effort that everyone has made in trying to call me by Jenn or Jennifer. I will still answer to Jiggy but appreciate being called Jenn.

I am still walking without the cane and this week has been particularly difficult. Our office flooded and they have all the dryers and dehumidifiers everywhere so managing all the cords, machines and having to go up and down stairs has really kicked my butt! I was quite a bit more wobbly this week than last but I am determined to not use the cane.

I am still having a lot of pain and a lot of sleepless nights so if you would pray for me on that, I would appreciate it a lot.

I am doing good with my macro diet and have lost about 25lbs. Only downside is I have finally bought jeans I LIKE and now they do not fit! LOL! I guess that is not such a bad thing but now I am afraid to buy any more jeans!

So there is an update...nothing really new. Thanks for all the love, support, prayers and compliments you all have been showering on me since I have been back. I appreciate you all more than you could know.

Love, Jenn

Okay people I need your help...

2010-01-11T20:24:00.001-08:00

and this time it is not for me. It is for my friend Trey. Trey was born in April at the cusp of 25 weeks. He has been in the hospital his whole life. He is medically ready to come home. It is a long story but Trey's parents have been treated poorly by the hospital to the point that his dad is no longer allowed to be at the hospital, He is not even allowed to call to see how his son is. It is an awful situation.

Anyway, this is where I need your help. I know a lot of folks follow my blog so I need you now...I need anyone who is or knows of any LPNs or RNs that would be willing to freelance to help Trey for a few weeks. He needs care of his trach, his gtube and just general medical assesment through the day for about three weeks until the home health kicks in on Feb 1st. We are desperate to get Trey home with his family where he belongs. His mom and dad and brother miss him terribly and a boy belongs with his family.

Also if you are willing to make a donation to cover the costs of the nursing care you can do that too. There are tw ways to do so. You can directly donate to his mom's paypal account (Alesiawinters@bellsouth.net) or by going to any Wachovia or Wells Fargo bank and make a DEPOSIT to the Trey Daniel Winters account. You can mention Lee Winters name if neccessary as he is the custodian on the account. I know that they appreciate any and all donations.

So help us bring Trey home where he belongs!

Love, Jenn

What I'd Give.

2009-12-28T12:15:00.000-08:00

A friend of mine sent this to me last night! I got quite the kick out of seeing this fresh faced Jenn. I think this was taken the summer or so after we moved to Atlanta. This is in the apartment we lived in before we bought the house where my mom still lives. So that would be around 1981. What I'd give to tell that girl a thing or two...

I have not updated in a few days so I thought that I would do that for you all.

I got home on Christmas Eve. Got in a few minutes before I was scheduled too. It was an alright flight. I was one of the first to board. I had a flight mate that we will refer to as elbows from here on. Elbows was a skinny guy who was reading muscle magazine all the while managing to poke me in the side with his elbows...lovely. There was a lady diagonally behind me that was up and down several times (making me nervous for some reason and I am glad I was not flying on Christmas in light of what happened going to Detroit), the drink cart made it to me and the snacks did not. I think that had something to do with the turbulence. It was not as nice as my flight to Philly. I was glad to get home though!

The family greeted me at the baggage claim and much to John's chagrin and Harvey's liking my bag weighed 9 lbs less than when I left. I think John really hurt himself hauling my suitcase out of the car when I got there! I packed a box of all the non essential things like jeans, shoes and the like. UPS was picking that up today. Yeah only I left the jeans in my suitcase that do not fit!

Anyway we got home in time for me to go through the mail, and then realize we were almost out of toilet paper...welcome back to REALITY! Ran to Kroger and then met the family at church. We had Christmas Ever candlelight service and then Harvey and the girls took me to Chili's for dinner. I am really glad that I drove seperate. I was wiped out and they all wanted to go to Wal Mart to see if they could score me a new ipod. John spilled coffee on my old one when I was in NJ (about three days into my trip). If any of you truly know me, I LOVE music and my ipod is like an extension of me. Yeah I was pretty lost without it but John turned me onto this great website called www.lala.com so I was not totally without music. They were all sold out of ipods on Christmas Eve but I came home and went to bed.

Christmas was nice and quiet. That is a good thing! The girls got a Wii (Thank you to whomever left it in my office for them) and lots of other goodies from some special Santas. We are so blessed. Thanks to you all who took care of us. So the rest of the day was spent playing Wii and eating and napping! That is my favorite part!

The day after Christmas I decided to be BRAVE. I hate the mall (The girl in that picture used to LOVE the mall and could spend hours there). I needed to go to the Apple store. I needed a new ipod. Yeah I could have lived another day or twelve without it. LOL! I had to park at Nordstrom's and walk a lot. I sat in the car for about five minutes debating if I needed my cane or not. I opted to go without. I walked to the Apple store and then decided to be adventerous adn go to Bed Bath & Beyond because I had a GC...yeah I paid for that. I have to realize that while I can indeed walk without the cane, I should not over do it. I have to remember I am not superwoman.

So a lot of you have been asking me what all is going on so I am going to bring you up to speed. The doctor in NJ has given me a number for someone at Emory. We are still trying to determine who will be the best fit. Dr. T feels that I have been misdiagnosed so I will basically be starting over at square one as far as determining what it is I have and how to treat it. He just does not know what it is I have. I am a mystery-to quote him~ So after the first of the year we will get all of tha situated at Emory, I will have a bunch of tests, more bloodwork and an MRI to get the ball rolling. I'm feeling torn about all of this. I am excited that Dr. T thinks there is something totally different wrong with me and we have to figure it out, but I am frustrated about that all at the same time.

I am feeling a little out of sorts with being back. I am glad and sad all at the same time. I am trying to work through a lot of stuff. I am not going to post that on the blog unless I feel like you all need to know about it. Just pray for me as this will be a long process and some people might not understand it at all. Just know that I need to work on some stuff. For me, about me. I am not trying to be secretive or vague. I just need you all to pray as I am continuing on a journey of healing both mentally and physically.

I am walking without my cane as often as possible. I am still having a little difficulty but John worked me hard while I was gone. I am determined to keep up the hard work. I will have to say though I miss walking to the candy store!

I will be back to work tomorrow. It is the week before the new year so I will only be working til noon each day. That will be an easy way to transition back to that. I am looking forward to being there. I missed my people.

I miss my NJ people too. John, Alycia & Jack (and Mrs. Hulce, Gretchy, Ivy and YES EVEN Alfonse). It was fun playing in the snow, wrestling with, hanging out, eating and walking to the candy store. I appreciate everything you all did for me while I was there. I will come visit again soon!

Love, Jenn

I'll be home for Christmas...

2009-12-21T06:37:00.001-08:00

Eve! Yes just in the nick of time!

After my flight was cancelled on Friday night and two feet of snow fell I was not sure when I would be able to get out of here. So yesterday morning first thing I started to call Delta to rebook my flight home.

I spent an hour solid listening to the busy signal (apparently everyone else was trying to rebook too...who knew?!) decided to try again later...more busy signal, got through once and got cut off just as I got a person. So between football games and dinner I had the phone attaced at the ear and my redial finger was just about stiff...

At 11:05 last night I FINALLY got through to the lovely Elizabeth at Delta, only to be told each day that I asked for (Mon-Wed) had NO flights to ATL. I was practically in tears as I asked her to PLEASE, PLEASE, PLEASE find me a flight for Thursday. I was in luck and just as we started to book my flight I got cut off again. I was in tears at that point.

It took another hour of trying to get through to finally get to a person and thankfully I had some more information and managed to book a flight for Thursday at 11:32am that will land in Atlanta at 2:03pm. I will be home for Christmas Eve services and I am so excited about that! I am looking forward to seeing everyone. I am most excited about seeing my family and being together.

So that is the big news from me for today. Pray for good weather and a safe flight.

Love, Jenn

Jiggy gone...

2009-12-17T13:53:00.000-08:00

caneless! Yes you read that right!

I got up this morning and for the first time in a long time my legs have felt pretty good. I still have pain in them but today they felt stronger than they have in a long time. So...

Alycia and Jack and I were going to take a trip to Wal Mart. I needed to pick up a few things (including a gift for Alycia as her birthday is tomorrow) and we just wanted to get out of the house for a bit.

So as we were gathering our stuff to go to Wal Mart I thought to myself, I am going to try to do this without my cane. I know that sounds totally crazy as I have been using it for almost a year and half...but I thought well, Alycia could help me and I was going to be holding onto a buggy so it should not be too bad.

When we got to WM, we got a pretty close parking spot but I still had to walk from the car to the WM. I was a little unsteady but I managed to get to where the buggy's were. I was impressed with myself! :)

I walked the WM and held onto the buggy. Jack would not let me push him in the buggy so Alycia had a seperate buggy. We had a nice lunch at Subway and Jack was so good at the Wal Mart.

I got back to the car, managed to walk to the car, then onto the cart corral and back to the car. I know it does not seem like much but to me it was HUGE. I have not been without the cane in so long it has become like a part of me and while I am not running marathons yet it felt good to walk without it...my legs are killing me at the moment but as I get stronger it will be easier. Who knows maybe this time next year I WILL be running marathons...

So how is that for some good news?

Love, Jenn

To jump or not to jump...

2009-12-15T15:04:00.000-08:00

that is the question...

Once when I was a kid we were at a public pool and there were these diving boards, I was good with the low one. We had one of those at home, I was comfortable there. Then there was one a little higher. No way I was going on that one. I am afraid of heights...always have been. Going back and forth to Philly has been fun as we have had to go over the bridge every time and I freak out EVERY time...I hate it!

So anyway, back to the diving board. Then there was this REALLY high diving board. My dad forced me to go up the ladder and wanted me to jump. I was freaking out...did I mention that I am afraid of heights? Well, by this time there was a line of kids behind me yelling at me to jump and I was standing on the edge of the board shivering and shaking. I then decided I could not jump so I turned around and made about 20 kids move so I could climb down the ladder and go back to my comfortable low diving board. My dad was pretty disappointed that I chickened out.

Well, today I am that same scared little girl, only I am standing at the edge of the diving board shivering and shaking and realizing that I CANNOT climb back down that ladder and go back to the comfortable. I am scared to death to jump. Afraid that I am going to belly flop and break my neck. But then as I stand there shivering and shaking I realize that if I jump and do what I need to do to make that perfect entrance into the water The judges will give me a perfect ten and it could be the most beautiful thing I have ever done in my life and when I surface even though it may be an unfamilar place that I am in it will be a new and beautiful place for me. Somewhere I have meant to be all along and just was to scared to get there.

I am working through a lot of stuff that has been weighing me down for a long time. John has given me lots of hard work to do and I am doing it. Today I realized that my besetting sin is not unforgiveness as I had originally thought but it is fear. I wrote down FIVE pages of things that I am afraid of. I don't think I am done yet. As I work through all of that I am in a very vunerable, scary place. Not planning my demise, not running away, not anything bad, just a very hard place for me to be. To be humbled by what I am facing and knowing that this may take a long time to get through. I did not get here overnight as John told me today and I will not get out of this place overnight either.

I covet your prayers and understanding. I am hopefully coming home on Saturday but I will not be the same Jiggy that flew away but hopefully on my way to a more beautiful and healthier Jenn who will be strong and courageous and not filled with fear.

Love, Jenn

Blah Blah Blah

2009-12-12T07:57:00.000-08:00

Could describe what I have to say or my current mood, take your pick.

So on Thursday I was supposed to get a spinal tap...yeah that did not go at all as planned. Our insurance company has decided they are not covering anything here. So I will be responsible for two office visits, my EMG and whatever they decide they will not cover of my bloodwork although they sent me to the place I had to have it since they would not do it at the hospital.

We are appealing, we are begging, we are fighting to see what we can do here. If we can do nothing here I will be coming home with a referral to Emory where we can run the tests at home and see what happens from there.

In the meantime, I am in HORRIBLE pain, I am not sure if it is the weather or all the exercise or a combination but whatever it is it HURTS. It took me over an hour to get out of bed this morning and I am moving at a snails pace. I took a shower thinking that might help, not so much.

I am trying hard to be positive today. I am trying hard not to think of all the things I am missing at home, I am trying hard to focus on the now but the now is really discouraging.

So yeah blah, blah, blah...

Love, Jenn

City Sidewalks...

2009-12-09T14:50:00.000-08:00

Yeah this is SO not about the Christmas song. This is about the city sidewalks I have been walking.

Today we got to the hospital (where they told us to go for my bloodwork) and they did not have me in their system...yay! What a way to start the day...we left the house at 6:30 so we could get to the lab at 7 when they opened. at 7:40 after going back and forth to the lab and the admissions desk the admissions man said I could not have my bloodwork done there. I would have to go to another lab because of my insurance. He says the good news is that the lab is nearby just a couple of blocks away...yeah his idea of a couple of blocks and mine are WAY different. You all would be totally impressed with the amount of walking I have been doing. Dr. T told John that I needed some exercise...well the doc can rest assured that I am getting the exercise.

So this morning it was rainy and windy. We decided since it was so "close" we would just go ahead and walk since we had parking already. FIVE, yes FIVE blocks later we were where we were supposed to be. I got my blood drawn around 8:30 and made it back to the car around 9:45...just saying I walk slow...it's all I got right now. I have learned that traffic in Philly does not yield to pink caned ladies, you have to watch what you are doing when you carry an umbrella, the sidewalk is terribly uneven and it is hard to do all of that while watching where you walk. Thankfully John is pretty patient when I walk and makes sure to look out for all that stuff. He also carries my purse for me so that no one steals it...he is good that way! Always looking out for me, much as he did when we kids.

So after walking five blocks to get to the lab we had to walk six back to the car...you do the math...I walk ELEVEN blocks today. Yeah, I needed a long nap to recover.

I got my bloodwork done but the insurance company is giving us an issue about pre certifying my procedures...pray that when I call in the morning they will tell me what I want to hear and that I can indeed have my procedures. I am tired and frustrated with all of that. I just want to get all of this stuff done. I want to be home with my family...Olivia cries EVERY. SINGLE. TIME. I talk to her and I do not know how much more of that I can take...

So say a prayer or two for me...specifically about the insurance stuff.

Love, Jenn

PS I walked about 200 yards yesterday outside without my cane...aren't you impressed??? I was! LOL! I have not done that in a very long time and I was a little shaky but before long I will be walking way further than that! :)

This is Spinal Tap...

2009-12-08T13:13:00.000-08:00

Haha! I have always wanted to say that.

Anyway. The doctor's office just called. They have me scheduled for labs tomorrow morning at 7am and my spinal tap at noon on Thursday.

Did I ever tell you how much I HATE needles??? Seriously like HATE them. An insulin dependant dabetic who gives herself a shot every single night HATES needles. Like with a passion.

So what does all this mean? This all means that I will be here at least through the weekend. I am still waiting on the MRI to be scheduled and cannot go back for my big lab work until Monday. We will have to see Dr. T after all of that so we are shooting for having me home for Christmas.

I have not done one thing for Christmas so that should be fun. NOT! Seriously, not one gift bought not one thing done. Maybe we will cancel Christmas until after the first of the year.

I hate to keep asking you to pray but that is what I need right now. More than you could know.

Love, Jenn

Really honest

2009-12-06T07:01:00.000-08:00

This sucks. There it's out there. While I am enjoying the relaxing and all that John and Alycia have done for me I am really having a rough time of it today.

Chris has hooked me up with a friend of hers and her and her husband have a Christian fellowship not far from where I am. They have invited me to come and worship with them. I really wanted to go, but when John woke me up this morning I decided I was not ready to go somewhere where I do not know any one and put on my happy face. I just could NOT do it this morning. I really wanted to.

The girls called me this morning before church. I missed getting up this morning and being at church. I usually get there about 7:15 and do soundcheck which is always a lot of fun...I miss hanging out with the guys in the booth making jokes and making sure that everything goes smoothly for the services. I miss being in my office in between and I am really missing singing with the choir this morning. It is 10:08 and I know that you all have sung already and what you sang and how great it sounded. I am missing...

Olivia was crying before I got off the phone, I was crying before I got off the phone. I am a wreck...this is really hard. I know that God has promised to not leave me nor forsake me. I KNOW that with all my heart...but this is SO hard and I am trying really hard. Today is just not the day for my fake it til you make it smile...this is really honest.

Love, Jenn

Fuzzy pants, warm blankets, college football and SNOW!

2009-12-05T16:43:00.000-08:00

Well, this could well be the best day ever except for the fact that I am in a funk. I am not sure why but I am. I am missing my family, I am missing The Journey and I am just missing.

John says I am doing good...with the whole being thing although it is such a challenge for me. I feel like I am in the way, or taking up too much time. You know the old saying about fish and guests...well, I have been here 6 days already! John and Alycia have been so gracious and Jack is really starting to warm up to me. He was wrestling with me this morning and even though it really hurt me it was really fun. He has really been a lot of fun.

So today I did not get out of my jammies, have not fixed my hair, I did brush my teeth...that would just be gross if I did not! I have planted myself on the couch with my fuzzy pink blanket (Thanks Becca!) and watched all kinds of college football (GO TECH!) and had a fabulous three bean chili that John cooked for dinner, three bean chili, fresh collards with italian dressing and it was delish! I am trying hard to do this macro thing and so far so good. I had a delish salmon the other night and I am eating lots of brown rice I actually like it and it is good for me so that is the important thing. I am trying to help where and when I can. I just finished cleaning up the kitchen even though John told me not too...He went to take a nap so I did it anyway. I am really not cut out to be a lazy or still person I am convinced.

I keep hearing how great the kids are doing at Journey. I am so so sad that I am not there to walk through and see the city. I know that everyone has worked so hard to pull it all off and it is the kick off to the Christmas season for me. I am feeling really removed from the whole Christmas season at the moment. I am feeling pretty removed and lonely at the moment. I am not sure what I will do tomorrow morning when I have no FBCL to go to. I miss my choir and I miss my church family. Just keep praying for me.

Love, Jenn

Nothing to see here...

2009-12-04T07:29:00.000-08:00

Hey there! There is no news to report today. Yet I feel the need to blog about it.

We have not heard from the doctors office so we wait. Do you know how bad I am at waiting??? Yeah I so suck at that! You just have no idea.

Last night I sat out by the fire for HOURS. Seriously, hours. I have not sat anywhere for any length of time in about 10 years. I mean seriously, I had to really reach back to figure out when that happened last. I sat and did NOTHING for hours. I was not worrying about who needed what. I was just sitting. just being. How amazing is that? You all should be impressed.

So yeah not a whole lot to report on, but wanted to let you all know I am missing you all terribly, especially the Journey...it just seems NOT RIGHT that I am here and you all are there. I thank you all once again for the prayers, meals for my family and cards. I appreciate you all so very much and love you even more!

Love, Jenn

In the midst...

2009-12-02T22:03:00.001-08:00

of all of this stuff that is going on I am having a blast with Jack! He is so cute, and so smart! Here is Jack and I after his AWESOME pot and pan drum show! Jack ROCKS!

I would love to have about a third of his energy! He is so much fun to hang out with and he has such a great imagination. I am just really having fun with this boy! I miss my kids, but Jack has been reminding me what it is like to have a little kid around again. I have been watching lots of shows that my kids watched like Little Bear and some new shows I have never heard of like Yo Gabba Gabba...who knew? He has made me realize that kids are a lot of fun to hang out with! So thanks Jack!

Love, Jenn

Well...not the news I really wanted to hear, but...

2009-12-01T12:18:00.000-08:00

So the nerve conduction test was awful...as it always is. I have to say John did a great job of distracting me and hand holding during the needle part...I did not get a sticker so THAT was disappointing. We have some good news and some not so good news.

The not so good is that they do not know what is going on with me and I am going to have to go for some more testing. He discovered today that the nerve on the outside of my leg is not working which is a huge problem and that the nerve on the inside of my arm from my elbow to my wrist is also an issue, but we knew that going in. It has been having issues all along.

He is not convinced I have CIDP but he does not know what the problem is hence more testing. I will have to have an MRI on my leg and then I will also have to have a spinal tap...that just flat out sucks. I did not expect that and I am not excited about it AT ALL. I will also have to wait ten days and do some MAJOR bloodwork. He can't do it now because the nerve conduction will skew the results. So I am here for at least ten more days and Ron says that is plenty of time to get back in time for our Rejoice! LOL!

The sheet for the bloodwork has FIFTEEN things marked off on it and one of them takes a month to get the results back because it has to go to Boston. It is called a SMP-Sensory Motor Panel. So we are waiting to hear from Tessa at Dr. T's office to set up the MRI and Spinal Tap and then we will have to wait on the bloodwork stuff. So we are looking at at least tem more days of me being gone. We will go from there after the bloodwork.

I am trying to process through all of this but I feel like I am back at square one with all the testing and not knowing. I think he is looking for something pretty serious, or at least that is what I am thinking after listening to him today. He said I am mystery. He is just not sure and wants to figure it out. I am thankful for that.

So I guess the good news is that Dr. T is willing to try to figure me out and in the meantime I get to hang out with some fun folks. Jack and Alycia have not been feeling good so that has been the reason I have not taken any pictures. When Jack is feeling better I will get the camera out and go to town!

I appreciate you all so much. For the love, support & prayers. They mean so very much to me. Keep them up!

Love, Jenn

Airplanes, reunions and nerve tests OH MY!

2009-11-30T16:50:00.000-08:00

Well hello there. This is the first time I have had to update the blog. My computer will not pick up a wireless signal so I am using John's and so here I am.

My flight to Philly was good. I had to pay extra to have my overweight luggage on board, I had a fabulous wheelchair ride to security...that is where it gets fun...apparently my insulin and syringes and laptop set off some sort of Homeland Security alarm and I had to have my stuff rexrayed, and I had to be PATTED down...SERIOUSLY??? The nice lady asked if I had any sensitive areas on my body...I told her my whole body. She just looked at me and continued to pat me down...so after that it was back in the wheelchair and onto the gate. They also took my cane away and put it through the xray machine and then the guy asked me if I was able to walk without it. REALLY. If I was able to walk without it I would you fool...so he held my hand while I walked through the metal detector.

I had my gate switched from B14 to B-3 which is almost at the end of the B gates. I am so glad I took advantage of the wheelchair services. When I got to the ticket counter the agent informed me that they had changed my seat. I was closer to the front and had a window seat. That worked out really well. As most of you know, I seem to be a magnet for people who like to overshare so there was a specific prayer that I get a quiet seat mate. Well, prayers were answered and as soon as my seat mate sat down she said hello and promptly put her earbuds in. Thank you Jesus.

The flight was uneventful. We hit a little turbulence here and there but for the most part it was a smooth flight. John met me at baggage claim and promptly threw his back out dragging my suitcase off the belt and to the car. It was very cool to see him after so long. I did let him give me a hug. It was the least I could do after all he has done for me over the last month. Alycia was waiting up for us and we hit it off right away. Jack and I met this morning and at first he would not talk to me but now we are friends and I think tomorrow when my box of stuff comes tomorrow and he gets his present from "iggy" it will seal the deal!

Leaving the family behind was horrendous. Olivia was hysterical, Emma was crying and me and Harvey just tried to hold it together...I have talked to them several times since and they seem to be doing okay. I miss them terribly but know that all the things I am doing will get me back to them in better health and in the long rin that is what s best for all of us.

Now onto the news of the day...we went to Philadelphia today to the doctor. We got there in time...this is where it went horribly LONG! The waited for about 30 minutes for them to take me back, then I waited for what seemed like forever before the PA (Amy) came in and ran me through my paces. Then we waited some more...my appointment was at 2 and the doctor came in sometime around 4...SERIOUSLY! The ironic part is that on my patient information says to be on time because they try to run on time and that if you are more than 15 minutes late they will cancel your appointment...so after waiting all that time, the doctor is quite concerned. He is not convinced that I have CIDP. Yet he is not sure what is going on yet SO...

Tomorrow at 11am he will be doing another EMG-that is a nerve conduction test...this is not my first rodeo, I have had two of these. He wants to see for himself. The lady at the office told us that the earliest they could get us in was December 15th. John promptly explained that that was not soon enough so she called back and had our appointment for tomorrow. God is good.

They also want me to do some PT as my right side has a severe deficit. My shoulder is frozen and needs some work. So we will do what we have to do and get that done. So rest assured that while I am away I am hard at work trying to get better. This is quite the adventure.

So keep praying, I need it. I am really feeling a bit disappointed about sort of being back at square one but I also feel hopeful that the doctor is on the right track and we will get the answers I have been looking for for the last two years. I am also a little scared of the unknown but as God has promised me in Timothy...He has not given me a spirit of fear so I will cling to that in these days when I am away from all things comfortable.

To the Pink Nation I have been blessed by your encouraging cards and letters. I love you all.

Love, Jenn

Puts things in perspective

2009-11-27T20:10:00.000-08:00

I went to rock Trey today. It was amazing as always. He is such a good baby and makes it easy to love him! He was wide awake and raring to go when I got there and we had a busy day. I got to do PT with him and then he had speech therapy. That was fun he took the bottle like a champ and sucked it down in like two minutes flat!

But while I was there something happened that really made me thankful that all I have is an invisible illness or two to deal with.

There was a baby in the bed across the way from Trey. I think he got there Wednesday when I was there last. He was discharged to Hospice care. For those of you who do not know that is for someobne who is dying. Here was this little bitty baby going home to Hospice care. I cannot fathom what his family is going through. I briefly talked to his mom. You could see it in her eyes, her baby has been given little time to live, there is nothing else they can do medically. I cannot imagine the hopelessness she must be feeling. I prayed for her most of the day while I was rocking and playing with Trey. I overheard the doctor say he may live a week but most likely not.

Katie, Trey's nurse for the day was also this baby's nurse. After he left another nurse came by and she broke down. I cannot imagine what her job is like day in and day out with some of the sickest babies around. Some of them don't make it. It takes a really special person to be able to be there for the families. My job pales in comparison. I am thankful that there are people out there who do the hard jobs.

It puts all of my small problems into perspective. I am not taking my baby home for what may be the last week of his life.

Thank You Lord for the perspective.

Love, Jenn

The Blindside

2009-11-25T20:02:00.000-08:00

Emma and I went to the movie The Blindside tonight. Olivia is at my mom's baking pies for Thanksgiving and spending the night so I wanted to spend some time with Emma. That is what we decided to do. If you get a chance to go please do it is a great movie based on a true story and I loved it. But it got me to thinking...in one scene Sandra Bullock has to explain about protecting the blindside of the quarterback. She said you have to protect the quarterback like he is a member of your family. And that got me to thinking.

You all are the left tackle...you have to protect the quarteback (in this case, my family) from being blindsided while I am gone. I have to trust you all to do your job so my family does not get sacked...seriously that is what was going through my head during that scene. I am trusting my quarterback to you...please make sure they are not blindsided while I am gone.

We are in 72 hour countdown mode. Well, at least I am...I think my lists have lists! I spent part of the day rocking Trey. He was all smiles when I got there and he had had a good night and did a great job of taking some stuff out of the bottle, he has to learn how to suck...he did a great job today. I held him for as long as I could today. He was alert and wiggly for part of the time and he slept for part of the time. That is when I talk to him and tell him about all the important things like about rooting for the Braves, the Colts and all about his huge fan club! :)

I really did not want to leave but had to attend the funeral of Ms. Lura Wilson whom I have come to know and love dearly over the last few years. She was the most precious woman and I will miss her so. I know she is in a much better place and I know she is with her Lord but for those left behind it will leave a huge void.

Left there and ran some errands...I had to remail a box of things to NJ that came back to me...my fault as I wrote the address wrong so I will have to wait until Tuesday to see my fuzzy robe, contour pillow and other goodies I sent. Jack will have to wait for his presents from Jenn as well. Poor kid! LOL!

Got home long enough to talk to Olivia, take a short rest and head out the door again. THANKFULLY tomorrow I can shut the alarm off and sleep as late as I want too. We will be celebrating Thanksgiving at my sister's in the evening. So I will get up when I get up, catch up on some shows I have missed and be in my fuzzy pants at least until when we have to get ready to go to Krista's.

Friday I get to go rock Trey again and this time I can stay until I am no longer allowed! :) No time limits. I like that! I know that I will be much more centered when I leave.

Saturday will be another day of rest, a day of packing and getting all the last minute things in place. I am sure I will be panicked by the time I lay my head on my pillow but at that point...well what good will all of that do me? I have to remember the wise advice a friend gave me this week to just breathe. I am trying hard to follow that advice. I think that is the only way I will get through this next three days.

So you guys remember to protect my quarterback and I will try to remember to breathe!

Love, Jenn

The countdown is on

2009-11-21T20:22:00.000-08:00

Wow! The last few weeks have been incredibly crazy. But now I am in full fledged countdown mode. In about thirty minutes I will be on the one week countdown. Am I ready for that? Not so much.

In 7 days I will be getting on a plane and flying away from my family and my church. This is a scary thing for me. John keeps telling me it is "just a doctor's appointment a little further away from home" yeah, 667 miles from home. Not that I am counting or anything!

I have much to do before I leave. I have to work on Monday and Tuesday. I have to make sure everything is in place before I go so that things will run smoothly. I have a to do list and I will plug away at it until it all gets done. It will all get done...

I have my notebooks organized. That was a good thing to do. I have a notebook with all my important numbers and calendars and everything I will need for when I am gone. Now Harvey and the girls have a notebook for while I am gone which contains scheduling info, who is doing what when and even the grocery list. Although I am thinking that with everyone who has volunteered meals groceries will be the least of their concerns.

I am waiting on a new sim card for my cell phone. I have lost several phones over the last few months. I found the original lost one with all my info in it so we have to get a new sim for it so I can take it with me. That way I can be in contact with everyone here.

I will be going to rock Trey twice this next week. I will be going Wednesday and Friday. I am thinking it will be just what I need to relax. I am telling you holding that boy in my arms and just loving on him does me way more good than it does him!

We will be celebrating Thanksgiving with my family at my sister's house. That will be a good thing. I am looking forward to that. I am excited because we will get to have Wyatt there. That was not the original plan so we are looking forward to seeing him!

I will be packing on Saturday so that I will be all ready to go. I am not sure how that will go but I will give it a good go so that I will not be over the limit. I already shipped some things ahead so that I did not have to put them in my suitcase. We decided after much discussion that Harvey and the girls will not take me to the airport. We will say goodbye at the house and then they will go do something fun...I think I heard Olivia say they wanted to go bowling, and then a good friend will take me to the airport. I think that will be best for all involved.

Pray for us all as that day approaches. There have been lots of tears and tantrums over the last few days and I know it is because we are all stressed by the things that are going on and that we are all just trying our best to make it through the coming days. We know this is what we are supposed to do but the doing it is difficult.

Thank you all for your continued love, support and prayers. I think I have lost count of how many have told us that they are praying for us. It is so humbling and it is such a blessing to know that so many are storming the throne on our behalf. I know that is how we have made it through the last two years and how we will make it through the coming days!

Love, Jenn

Thankfulness

2009-11-20T11:55:00.000-08:00

I am a pretty thankful person most days. Not just around Thanksgiving. I am thankful for big things and little things. Silly things that make no one but me happy, things that God has given me or shown me. Just really depends on the day. But since getting sick I think I have a heightened sense of gratefulness. You know like being grateful that I can get out of bed, get my kids to school and go to work. It is not always easy but God gets me through the day.

I am SO thankful for so many things. I thought I would post them here so you can see that if you look really hard there is a lot to be thankful for not just at Thanksgiving.

So here goes. This could get long. There may be tears...well if you know me I cry all the time. So there WILL be tears!

Things I am thankful for in no particular order:

*My family-that is a given, for the children that doctors said would never be conceived, for the marriage that people said would not last...I am thankful.

*My faith-since finding John again, my faith has been tested and strengthened. He has reminded me that I am strong in my faith, I know what I believe, and that God has a plan through all of the things that I have been through. And that is to glorify God in ALL circumstances. I am so thankful for God showing me things daily that are molding me and shaping to be a better vessel for HIM.

*My work family-I do not say it flippantly, I am SO blessed to work in a place where at any moment of the day we can stop and pray for one another...that is so cool...where we really do share one another's burdens, where I really do LOVE my job. Where I really do LOVE my boss. It is a pleasure to go to work each day...a lot of people cannot say that. I am so thankful that I have been allowed to take the time that I need to be gone and know that they are praying for me and taking care of things here so that I do have to worry about thing (although as you know I will worry anyway.).

*I am SO thankful for my scrapbooking girls. Just when I turn lazy and change plans on them they show up and show off to make my last scrapbooking of the year extra special. They decided to carry out my original plan unbeknownst to me. You ladies are so special to me and I am so thankful knowing that when I leave my Pink Nation Warriors will be lifting me in constant prayer. For you all I am SO VERY thankful.

*I am thankful for fuzzy pants...I know it's a little thing that makes the world of difference...when you are in constant pain being clothed hurts. I know that sounds nuts but it does. Fuzzy pants do not hurt me to wear. So whoever invented fuzzy pants...I am thankful for you!

*I am thankful for Facebook. I know another silly thing that has made all the difference in my life. If not for faceboook I would have never found John and we would not be on this journey to wellness I am convinced. So Mark Zukerburg for you I am thankful even though you have no idea who I am.

*Modern technology, I am VERY thankful to you for allowing me to keep people informed in a short amount of time. I am also thankful for the person or person who invented the laptop. I am also thankful that I now have one. Thanks John!

*The list could go on and on and on of all of the many things I am thankful for. Mostly I am thankful for you all who are reading this blog and keeping up with me and praying for me and taking care of me and my family during this time.

Colossians 3:15

Love, Jenn

So emotional today.

2009-11-17T16:10:00.000-08:00

I have been a wreck today. Thankfully those who know me well know that I am weeper normally. Today has been an emotional day. Just when I think that I am okay I realize something else that I will miss while I am gone or I realize that my kids are upset and that upsets me.

Had to go to the school and change some emergency contact info and talk to Olivia's teacher. She got a little upset and started to cry (Olivia not the teacher) so that pretty much set the tone for the day.

I was in tears serveral times today and I am sure that this will not be the last time this week. I know I will be emotional tomorrow night when I rehearse with my beloved choir for the last time for I don't know how long. I love them like a family and it will be hard to be away from them.

So if you would, please pray for us. Pray for peace and us all to realize that this seperation is temporary and the end result will all be worth it.

Love, Jenn

Totally off the radar

2009-11-16T12:08:00.000-08:00

Okay so normally I am a pretty organized person. For some reason I completely forgot that my kids need a ride on Wednesday nights to church. They really would only need rides for 12/9 & 12/16. I guess becuase we are off for two weeks.

Olivia will have to be there at 5:30 on the 9th (Emma too) and then they would need to be there by 6pm on the 16th.

Let me know if you can help a sister out!

Thanks so much!

Love, Jenn

Address

2009-11-15T20:19:00.000-08:00

Some people have asked for my address while I am gone. I made sure it was okay with John to post so here it is:
Jiggy Young
C/O Sunpower Solutions
112 Colonial Avenue
Haddonfield, NJ 08033

I will have my cell phone with me as well.
404.375.9985

If you want to send something to Harvey and the girls:
Harvey, Emma & Olivia Young
1555 Hwy 138
Loganville, GA 30052
770.786.3985

Love, Jenn

So much to do so little time...

2009-11-15T17:14:00.001-08:00

Well hello there! I have been so busy that I have not had a chance to update the blog. Sorry about that. Alot of folks have told me they are reading the blog so that is good. It is the best way to keep up.

I am now blogging from the comfort of my bed, I picked up my laptop on Friday. I have been busy importing contacts and favorites and making it mine for the last couple of days. I did not realize how much stuff I actually do have on the computer. How did I ever live before the internet??

So I am in countdown mode. 14 days from today I will be sitting at the airport waiting on my flight. I am nervous, excited, scared all rolled into one. There is a lot to do between now and then, I only have five more days in the office so I will be frantic I am sure! I am busy making lists and checking things off. I am coordinating all things Young Household, I am trying to make sure I have all of my medical things in order. Have I mentioned that in the midst of all of this my day to day life goes on like having to do laundry, haul kids, end of season soccer stuff, upload pictures for soccer parents and on and on...

Meals are coming together and Sandie is doing an awesome job of heading that up, I have someone getting my kids to Bethlehem each of the three nights. I only have one other transportation issue and that is on Mondays. Emma takes bass lessons at 5pm with Hannah Coursey. I have not been able to get her there yet. If you can help with that, please email me jyjiggy4jc2@bellsouth.net or you can call me at 770.786.3985 or you can facebook me. She will need a ride each week until probably the week before Christmas.

I appreciate your continued support and prayers. Harvey came home and told me that people he does not even know were asking him how we were doing and what they can do to help. We are so blessed to have such a wonderful church family! I love you all more than words can express.

Love, Jenn

Your prayers are working!

2009-11-11T18:43:00.001-08:00

I have been busy the past couple of days. Trying to get my family situated and my work life situated. I am a little overwhelmed and in the midst of all of this I quit DDP cold turkey! What the heck was I thinking???

Anyway, your prayers are definitely being felt and they are really working! I was having some trouble getting the referral from my neuro. For some reason when you ask for medical records or referrals they take it as a personal offense and act as if I have done something wrong. I am just trying to get treatment. So it took me almost a week but I FINALLY got the referral! It came yesterday! So it along with my appointment card, & my patient info is all safely tucked away ready to go to Philadelphia!

I am leaving at 9:50pm on Sunday November 29th. I will arrive in Philly at 11:56pm. I am a little nervous about being at the airport the Sunday after Thanksgiving but I am hopeful that I will be able to get a ride to the gate and I will not have to worry too much about being jostled. I have not flown in a really long time (Emma was just a baby) and I am little nervous about the whole thing. But I know it will all be okay.

The girls and Harvey are settling into the idea of me being gone. I have a notebook where I am keeping all of my information to take with me. Emma says I need one for here to write down all of the things that they need to do! :) I love that kid.

I am on day four of no DDP. I HATE water with a passion but I suppose I will adjust. It is hard to walk down the ailse at the store and walk right by and not put any in the cart! I am taking it one day at a time and hopefully it will be better soon. Keep praying...I have not killed anyone yet! :)

I hope you all know how much I appreciate your prayers, well wishes and love. I cannot tell you how much that means to us. Keep it up. This is just the beginning!

Love, Jenn

So there's this boy

2009-11-10T18:58:00.000-08:00

and I have a crush on him! His name is Trey. He is my friend Lee's little boy who was born at 25 weeks and has been in the hospital his whole life. I had the honor of going to love on Trey yesterday. Can I say I think it did me more good than it did him. I spent three and a half hours sitting in the dark and quiet (well as quiet as the NICU can be with all the monitors and respirators etc) and just loved on that boy. I think I have a crush. He has the biggest sweetest eyes and he is fiesty and I cannot wait to see what God has planned for him and I am convinced that God indeed has a plan to prosper Trey.

After all of the excitement of last week you know where my hair was on fire as I was trying to get things settled here in order to leave...well Trey was just what I needed. When I left him he was still sleeping and I was feeling quite the sense of peace. The traffic did not bother me (and for those of you who REALLY know me-that in itself is a MIRACLE), nothing bothered me. Not even the fact that I have given up DDP. I was tempted to stop on the way home and get some but did not because I was just so calm and happy. Even today as I got up and got a busy start to the day Trey was fresh on my mind. I feel more centered and at peace than I have in days. Trey was on my mind all day and I am really hoping that I will have another opportunity to go rock that boy. He stole my heart last night but when you look at that sweet face how could he not? So yeah just in case you hadn't heard, I have a crush...

Love, Jenn

No Diet Dr. Pepper + Jiggy=disaster?

2009-11-08T18:53:00.000-08:00

So I have had a long standing love affair with Diet Dr. Pepper. Anyone who knows me knows that I usually have one at just about all times. I gave up Diet Dr. Pepper yesterday. I drank my last one about 10am. I am now completely DDP free.

Seriously? What was I thinking? I have a headache the size of all outdoors and I am trying hard not to be crabby.

They say it takes 21 days to break a habit. In 21 days I will be flying out to Philly. Maybe by then I will feeling a little better about this whole giving up my DDP. Maybe, just maybe!

Pray for me as I am doing the best for my health even when it is not easy.

Love, Jenn

The Journey To Bethlehem

2009-11-07T14:36:00.001-08:00

Journey to Bethlehem is coming and I am so sad I will not be here for any of it. Not even the dress rehearsal. I leave the day before. It is the first time I have not been here at all. I could not participate last year but I was around, I walked through, I hung out in the worship center. It was a lot of fun. I am really sad that I will not get to see the girls in their costumes or how the city looks and feels. :(

I need some help with getting the girls to the church for Journey. So if there is anyone who would be willing to come get them and take them Harvey woudl be able to bring them home. You can email me at jyjiggy4jc2@bellsouth or Facebook me to let me know.

Aren't you all impressed? I needed help AND I ASKED for it! :)

Love, Jenn

Food Glorious Food

2009-11-06T06:30:00.000-08:00

Yeah I love food, always have always will. Anyway this is not about me and my long standing love afair with food.

Some folks who have asked about bringing meals had some questions and I am just going to answer them.

Harvey and the girls are not terribly picky. In 20 years of marriage I have only found about two things he will not eat, coconut and raisins (I LOVE both!).

The girls are not terribly picky. Olivia loves chicken in any shape form or fashion and will eat all sorts of veggies her favorite is broccoli.

Emma is not terribly picky either. She just doesn't like her food to touch. That is a subject for a whole other blog!

If you wanted to do a GC instead for them to eat out there is not reallly a place I have found that they do not like! It is all up to you to do what you are going to do but know that I appreciate you guys already calling and coordinating with Sandie. That is a big load off my mind while I am gone. I love you guys!

Love, Jenn

Meal Coordination and a slight change of plans

2009-11-05T17:23:00.000-08:00

Okay everyone has been asking about meals for Harvey and the girls while I am gone so we have a person who has offered to coordinate that! She is my BFF Sandie Bazemore. So here is the deal. If you want to volunteer for a meal that is wonderful. Let Sandie know and she will meet you at the church and deliver to the fam.

Sandie Bazemore (BTW, I asked permission before I put her info out there.)
770.466.7084 home
678.231.6764 cell
sabaze@bellsouth.net

Please give her your phone number and email so she can get a reminder out to you. Sandie I love you for helping take care of my family.

Okay so onto the news of the day. My leave date was originally December 1st. But again, God has other plans. I will be boarding a Delta flight (I hope Russell keeps all the parts in the right places for me!) on Sunday November 29th since I have a 2pm appointment on November 30th with a neurologist at Jefferson. Actually I know that was a God thing because actually the only appointment available was December 22nd...just sayin.

So now I am in let's get everything ready for me to go and things keep piling up on the calendar. Like banquets and end of soccer season parties-which by the way this has been THE LONGEST soccer season EVER! So I am trying to tread water and not drown. I am glad we have late soccer games on Saturday so I can get some stuff done around here. And maybe even squeeze in a nap.

And just so you know I have two Diet Dr. Peppers left and they are at the office. When they are gone, they are gone. Pray for me and anyone I may come in contact with in the next little bit! It has been quite a shock to the system but it will only get better from here.

Love, Jenn

More God Details

2009-11-05T03:25:00.001-08:00

"For I know the plans I have for you," declares the Lord. "Plans to prosper you and not to harm you. Plans to give you a hope and a future. Jeremiah 29:11

This has always been one of my favorite verses and WOW! Just WOW! I make plans but God obviously has a greater grander plan thank I could ever imagine.

Okay so after a little rest (for those of you who know me I do not sleep much.) I figured I should fill you in on some more details because you will not believe how God has been orchestrating this amazing thing.

There are so many little things that have had added up to BIG things

*I found John!
*John remembered me!
*John lives in New Jersey after living until recently in Montana-if he still lived there none of this would be going on I am convinced.
*He knows people who work at the hospital I will be going to. http://www.jeffersonhospital.org/
*He has been on this diet that I will be on. He has sent me the money to get my kitchen set up so I can put it into place because to start it is expensive and those of you who know me...I am broke!
*While I am in New Jersey he has hired a chef to teach me how to cook this way.
*He has opened his home to me.
*He has offered my husband a job. Long story on that one but when Harvey was laid off earlier this year, he found another job but we really think God has something bigger and better and then along comes John with this unbelieveable offer.
*He is flying me to New Jersey.
*He has honestly and completely rejected every excuse that I have given him not to take him up on this opportunity.
*He has given me a few weeks to get my stuff together here.

So yeah, God KNOWS the plans he has for me. I am so glad He does because I could have not come up with a plan like this ever!

Love, Jenn

This is the beginning of the story.

2009-11-04T18:08:00.000-08:00

I want to tell you all a story. So sit back and relax because this is EPIC!

Once upon a time...no seriously, Once upon a time...there was a little girl who was born in Camden, New Jersey. She grew up in various places as a baby. She lived in Georgia when she was 6 months old. She lived in Valley Forge, PA where her sister was born and when she was almost three her daddy died. After her daddy died her mom left to raise two small children moved to Pennsauken, NJ. We lived in a small house on Lexington Avenue. I loved it there. There were lots of kids to play with and I made some of the best friends there.

One of those friends was a boy named John. John and I were like peas and carrots. (One of my favorite movies BTW) I chipped my front tooth on his head one time, I laughed at him as he got his head cracked by our "favorite nun" we spent countless hours playing in the neighborhood. He was special to me and I was special to him.

All of that is VERY important...it is all part of this miraculous story...

When I was almost 5 my mom remarried. I will not bore you with all the details but it was a bad thing and they are now divorced. I grew up in a very abusive home and I never told anyone...not even John. But he knew something was not quite right. I find it amazing that he knew, we were ten!

After my parents got married my step dad decided he wanted to go to culinary school so we uprooted our lives and moved away to Rhode Island. I never got to say good bye to John. That made me very sad. the day I went to say goodbye to all my friends he was at home sick.

I liked Rhode Island alright but it was not home and I missed my friends.

After he graduated my step dad got a job in Atlanta and we moved here. We made my parents promise that we would not move again until after we graduated and they kept that promise.

All of this time I thought of John over the years and wondered how he was. When Harvey and I met and married I told stories of growing up on Lexington Avenue and John was always part of those stories. He has been here all along but not been here too.

So FLASH FORWARD about 30 years and thank you GOD for the invention of the internet and Facebook. I was looking for my best friend from NJ, Carmelita. I found her sister. Checked Gina's friends list no one really stuck out as someone who remember me. Got in touch with Carm. Checked her list lo andbehold there was JOHN! Now before you get any idea that I am leaving Harvey and running away with my childhood sweetheart...that is not the news I have to share! Because I am not! So, I put myself out there and sent him a message and indeed he did remember me. (honestly I did not know if he would or not). So we started emailing catching up on our lives. He is married and has a cute little boy named Jack who looks like his daddy did as a boy and he has a new baby on the way. He told me about his job, I told him about Harvey and the girls and what I do. You know all the stuff that has happened in the course of 30 years.

This is where the story gets a little nutty so bear with me. Most of you know I have been sick for a little over two years. I have been seeking treatment and none has worked. The doctors know what will treat it but it is costly and most insurance will not cover it. So we have been at a stand still and I have not been getting any better. As a matter of fact for about the past two months it has gotten a little worse. Anyway John asked me about it and asked me to send him the info on the disease and the treatment. Like okay you are not a doctor so what good would that do...anyway I sent him the info at about 3am on Saturday. He emailed me back at 10:30 with a plan. Wait til you hear all of this because as my beloved choir sang tonight My God is a God of mighty miracles.

He offered Harvey a job. A good job working for his company. Here in GA.

He has offered me an opportunity to get healthy. There in Philly.

He has offered more than I can I possibly tell you in the few minutes I have here.
He has done things for me in the last 6 days that in my wildest dreams I could not orchestrate. It is indeed what we have been praying for for the last couple of years.

So what does all of this mean to me?

*It means that I am stepping out of my life for awhile. It means that I have to "lose control" and let people help me.

*It means I am going to totally change my lifestyle-I am doing a diet that will be a way of life but it will not be easy.

*It means that I have to learn how to be. I am not so good at the being.

*It means that I may be healthy...I WILL be healthy...

*It means that I will be away from my family and my church. That will be VERY difficult but thankfully I can listen to sermons online.

*It means...well it means a lot .

*It means that I have to be obedient to do what God wants me to do.

What does this mean to my family?

*It means that they will be with out me for an unknown period of time. That is going to be hard on all of us.

*It means that they will have to adjust. I do not like change and they do not either.

*It means that they are going to have to pull together to pick up my slack.

*It means that they have to trust that God is in all of this and learn that He is there even when I am not.

What does this mean to you?

*It means I covet your prayers. Now more than ever. For those of you who have been on this journey with me from the beginning I LOVE you all so much for praying for me and I beg you to keep it up. I know that many days I have made it through because of your precious prayers. I know that you all will get me through the days ahead.

*It means that you have to be "the mom" while I am gone.

*It means that I will NEED your help. It is hard for me to ask and I am not sure how it will look and what we will need just yet. That will probably be a seperate post.

I leave on December 1st to go to NJ and begin a wonderful journey. I am looking forward to going. To seeing John, meeting Jack & Alycia. And just getting well.

So there ya go. I hope it was worth the wait.

Love, Jenn