Giving Thanks

A Time to Give Thanks

What's the one thing you're most thankful for? Write a list of three things you're thankful for, excited about, or inspired by.

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One of my favorite Bible verses (I know I say that a lot) is Colossians 3:15-17 (NIV) and it says:

"Let the peace of Christ rule in your hearts, since as members of one body you were called into peace. And be thankful. Let the message of Christ dwell among you richly as you teach and admonish one another with all wisdom through psalms, hymns, and songs from the Spirit, singing to God with gratitude in your hearts. And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him."

This doesn't say when life is going grand be thankful, or when you win a million be thankful, or when you get an A on a test, or your dream job, or...better yet...when God heals all your pain and diseases be thankful. It says be thankful to God for it in whatever you do and do it because the peace of Christ rules in your heart.

So with all that said, the thing I'm most thankful for this year, after ya know, being alive still cause there were some touch and go times in there, especially lately. I am most thankful for now and always my life with chronic illness. Ya know why, because God tells me I'm supposed to be. And I seriously try to live this way. I really, really do. And if you know me I hope you know that.

I have met some of the most wonderful friends I would have never met if I didn't have dysautonomia, or EDS, or mito, or whatever else I have because they are in online support groups. I can offer my support and medical expertise (what little I have of it). I try to be positive despite the constant negative barrage of information being thrown at my friends and myself. I'm thankful this is my mission. From the first diagnosis I've always said if I'm going to have this, there is a reason God wants me to, so I might as well find it, so I will be as thankful as I can be. This does not mean I don't have bad days and cry, but I'm usually still thankful on those days too, just overwhelmed.

I'm also thankful for/inspired by:

1- The fact that my entire family is coming over to my house to enjoy a Thanksgiving meal that I prepared mostly by myself today. No matter how bad it hurts and no matter how bad it stinks that I probably can't even eat any of it at all, it's still awesome that I have a family I want to spend two days in pain standing in a kitchen cooking for. A lot of people don't have that.

2- That my thesis is approved and maybe finally getting underway soon so I can start helping people get off narcotics for their fibromyalgia because drug laws are evil, but that's a whole other blog post. ;)

3- I'm inspired by all the people that I interact and meet with on a daily basis that have to live with chronic illnesses like I do. I constantly have people telling me how I'm so strong and I'm so inspirational and let me tell ya people, I'm no hero compared to some of my friends. I have friends that are mothers of anywhere from 1-4 kids dealing with as severe problems as I have. I have friends with kids as young as 2 up to 18 dealing with as severe of problems as I have. There is no way I'm the hero in this story, they are. I'm thankful they keep me around. That's for sure.

Top Three Tuesday

List three questions you have for other patients.

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1. What is your favorite alternative therapy to relieve pain or that helps you and why? What have you been able to do because of starting this treatment? 

2. What is your most annoying symptom, the one that you wish would go away just for 24 hours so you could remember what it would feel like to be without it for one day again? What would you do on the day you didn't have that symptom? 

3. Who is your favorite doctor and why is he/she your favorite doctor? Tell me a story about your favorite interaction. 

Finding the Balance During the Holiday Season

Give us some tips you use to balance the holidays and your health. How do you stay in your own boundaries and make sure you follow your health regime/plan?

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Well, this NHBPM blog entry topic literally makes me laugh out loud (so did yesterdays topic but I was too busy overdoing it yesterday to have time to write so look for that soon), because anyone who has gotten to know me knows I don't do balance well. It's almost comical how well I don't do balance. 

I feel good and do thing after thing after thing after thing until I feel really bad and lay in bed and tell my mom I'm dying over and over and over, wash, rinse, repeat. Or something like that. 

But surprisingly, this holiday season, so far, fingers crossed, I have done a great job at finding the balance. 

Maybe it's because I have just spent so much time in the hospital and have no desire to end up there again soon. Maybe it's because I'm not in school or work this holiday season so I'm ridiculously bored and have always loved the holidays and have time to spread it out. I don't know, but here is how I'm finding the balance for the holidays. 

*I have completed all my Christmas shopping (minus my sister who hasn't given me a list yet *ahem*) and did it all online one person at a time one day at a time so I didn't get overwhelmed. I didn't have to get out of bed. And I have amazon prime and was able to get most of my gifts off of there so I usually didn't even have to pay shipping! Just don't tell that I started with my best friend and my dog...haha

*I've decorated my room for Christmas and just did a small Christmas tree, a nativity scene that was already pre-assembled, and a sign to hang on the door. I also am in the process of making an advent calendar but I'm making that a little at a time since it can't be used until December 1st anyway.

*The house can't be decorated until after Thanksgiving according to my mom so that will be done at a slower pace with help.

*Say yes to a Christmas party here or there. Just know that you can't be the first guest there and the last guest out. Have your pre-planned "exit strategy" and regrets for having to leave early. Make sure you have in your head what you are going to say politely for why you aren't eating so you aren't sitting there explaining to every person "Well, I have this condition, and it makes me allergic to" or "I have a feeding tube so" not the place for that, been there done that. But go with your friends, have fun, just not too much fun, you will pay for it later. ;)

*For Thanksgiving, it's a little more difficult this year. We always do it at my house and I always do the cooking. First off, the cleaning has been done in phases, one room at a time one large thing at a time like steam cleaning the floors only one at a time.

*When the food starts getting cooked we planned for a lot of things that can be started the day before so not all the things are being made the day of so that I don't get exhausted from cooking everything so that I'm not cranky during the meal. There mom I said it. 

*We also seriously trimmed down our menu this year due to several of the people having several dinners to go to, and me not being able to eat any of the food I'm cooking. So that will save a lot of energy too. 

These are just some small ways that you can help find some balance and still enjoy a full holiday celebration with your family. Like I'm on a feeding tube 24 hours a day and still cooking a pretty full Thanksgiving turkey dinner at my house. It's still possible guys. You just have to know your limits and what you can do physically and emotionally. It's going to be hard, but it will be worth it to have my whole family together and I love cooking! Yummo, can't wait! 

I Still Remember

“I Still Remember…”
Free write a post that starts with this line and describes an unforgettable moment in your health journey. (For example, Cancer free, a diagnosis, etc.)

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I still remember standing in my classroom with the phone in my hand listening to my wonderful, amazing doctor on the other end of the phone telling me I have to go to the hospital now while my 5 lovely, talented in their own way, unique middle school students with autism were I'm sure busy destroying my classroom because I was not directing them in an activity or keeping them on a schedule. 

I remember that day perfectly. I remember feeling "fine" for me up until the phone call that I don't even know how it got patched through to my room since we weren't allowed personal calls in our rooms. I remember telling my doctor that it was ok, I would go to the hospital after work, it was only 4 hours away and him telling me I didn't have 4 hours to wait, in fact he would rather send an ambulance to come get me rather than me drive the 3 miles there. I remember then not feeling so well. The adrenaline catching up to me. Feeling faint. 

Looking out in the hallway and whispering across the hall to a fellow teacher to come watch my class I need to go tell the principal I need to go to the hospital my doctor just called and said so. I remember being nervous walking down to his office because we didn't always get along and wondering what he would say and when I told him what the doctor said he said leave now, he would pray for me. I remember not even knowing what to do or who to call. 

I remember getting to the hospital and being directly admitted and whisked away for a blood transfusion. I had no time to waste. My hemoglobin was so low there was barely enough blood in my body for it to make one round. I remember my doctor being there even though there were hospitalists because he knew I didn't do well with change. I remember him explaining what was going on and him thanking me for asking for that one more blood test because we might not have caught this otherwise and I wouldn't have made it. 

You see I also remember the days before that, the countless doctors appointments with no answers and the negative tests and me always saying let's just do one more test. Well this one struck gold. Just a simple CBC. And one the week before that, and the week before that. Showed my hemoglobin was dropping super fast. Which meant I was bleeding somewhere and that along with a whole bunch of abdominal pain and weird symptoms while I was eating. Which meant I got to have a colonoscopy and an EGD at the age of 24 and it was not fun at all. And that lead to the day that I remember the most, the day I just described. The day that I joined the chronic illness forces officially forever. The first time I almost died. The day that I was diagnosed with colitis and celiac disease. November 13, 2009, a Friday none the less. It's a day I will never forget. There have been many more unforgettable days in the life of chronic illness since, but this is the one that sticks out the most. I don't think I will ever forget how I felt this day. The day my life changed forever. 

Advice Column

Top Three Tuesday

Give three pieces of advice you would give to a caregiver.

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If I could or would give advice to a caregiver (which I guess would be my mom) my advice would be: 

1) Remember always that it's not our fault that we are sick. We wish that we could be doing things like normal people. We wish that we could be working and taking care of ourselves. We wish that we didn't need a caregiver. We wish that we could lead normal lives. We wish for that more than anything in the world. Please don't take out your frustration with having to care for us on us. It's not our fault. We would rather be taking care of you, most likely. 

2) Remember to take time for your self and to take care of your health. You are no good to either one of us if you are not healthy. And please don't bring your germs around me. I definitely don't need those around my immune system. 

3) Do things that are fun for you. You can't always be drug down taking care of sick people. Especially you mom. You've spent your whole life taking care of me and my sister. You retired once. Then you went back to work to take care of me. Do something fun for you. I know I get mad when you go out with your friends when I'm stuck in bed, but it's because I'm jealous. Do it anyway. But not everyday. ;)

Well That Was Embarrassing....NHBPM

What’s the most awkward situation your health condition ever put you in? (Don’t be bashful, we’re all friends here). Maybe you can look back on it now and laugh, but it wasn't so funny then.

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Well, let's see chronic illness, especially as many as I have, leads to all sorts of embarrassing situations. 

But I've only got about 30 minutes before my counseling session, and I don't feel like starting another section on my epidemiology paper so I'm just gonna list a couple real quick and not really go into much detail on them and leave them up to your imagination. 

Passing out in the choir loft at church (multiple times) and not really knowing why yet because church is just too dang long, but I just had to keep being in choir! 

Having to keep getting up in the middle of every meeting imaginable multiple times (and I'm talking 5 or 6, not 1 or 2) because I had to go to the bathroom again...and these meetings are just an hour long. 

And on that note, having accidents when I'm a grown adult and learning to bring a change of clothes with me everywhere I go. 

Throwing up on myself in the living room for some unknown reason because I didn't even know I had to throw up it just happened. 

Having to sit in the middle of any store I'm at longer than 10 minutes because I can't stand up longer than that! Thank God I finally have my wheelchair.

And I think that's about enough of my embarrassment for you. How about you? Do you have any embarrassing moments you'd like to share with the chronic illness world? I know you have some, chronic illness isn't all clean and pretty guys! 

Favorite Fridays: I Will Follow You NHBPM

I am really far behind already so I'm going to try to catch up today. By doing Friday, Saturday, Sunday, and Monday's blog today. So enjoy. :)

Who are your favorite people to follow on social media? (Twitter, Facebook, Instagram, etc.)

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On Twitter I follow mostly more professional/health related people, Food Network Chefs and some friends. Some of my favorites are: 

Alton Brown is my absolute favorite because he uses all post-its and it cracks me up because it makes so many other people so mad. 

I like Diana Driscoll at Pretty Ill.com because she explains illnesses that we have so well and does so much to get studies done and advocacy done for us. She is pretty awesome. 

I follow Invisible Illness Week for updates and so I can share updates during II Week. 

I like Udi's Gluten Free because they are always bringing awareness for Celiac and doing giveaways!

Finally, I like to follow Today's Dietitan for a more professional network. They post new articles everyday and new dietitans that are up and coming and doing new things. 

As far as Facebook goes I don''t really "follow" as many people there. I just have mainly my friends there. But I will say I have changed to most of my friends are chronically ill and some of my friends that are not chronically ill complain about how much health stuff I post. Sorry about it. It's my life. Get over it. I do follow a couple of things that I enjoy though on Facebook. 

One being the Chronic Perseverance page. They just post inspirational quotes every day for those that are chronically ill and disabled. 

The Life as a Zebra foundation is the same way. She posts inspirational quotes and posts what she is doing to bring awareness and raise research money. 

On Instagram I follow mainly chefs from the Food Network so I can dream about eating their food, or any food for that matter. I mean who wouldn't want to eat things like:

What Alex Guarnaschelli makes 

or what Elizabeth Falkner makes

or Ree Drumond makes

or on and on and on. 

And that my friends are the favorites of who I follow on social media sites for the most part. :)