11 years ago

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

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

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...

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

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

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...

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

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...

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...

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.

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...

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...

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...

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

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...

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...

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

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!

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...

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