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