Thursday, October 31, 2013

30 Day Chronic Illness Challenge: Day 22

How do you feel you have been treated by the medical system?  Explain.

I feel that I have been treated pretty well within the medical system.

I've only been hassled and examined once for track marks to make sure I wasn't a drug seeker.  I only had to endure my jello, dillauded diet for a week and a half while I waited for surgery.  The only long term effect is the constant battle with gastritis as a result of eating what basically amounts to heroin for a week and half.  I became so anemic I needed a blood transfusion and an iron infusion.  All because the wrong blood test was ordered - repeatedly.

These stories don't even come close to the horror stories of some out there.  So, I'm counting myself lucky.

Wednesday, October 30, 2013

30 Day Chronic Illness Challenge: Day 21

What networks or website have you used for support for or information about your illness?, and have proven useful to me more than once.  It has been my experience that these forums are full of people who genuinely want to help and are not full of angry trolls who never left middle school.  We all know what I'm talking about.  I have a few people I follow on tumblr and a few groups I follow on facebook (voices of fibromyalgia, and butyoudontlooksick are both pretty active but not so much that they clog up your whole newsfeed).  I'm always looking for new resources so please, feel free to let me know your favorite networks and websites.

Tuesday, October 29, 2013

30 Day Chronic Illness Challenge: Day 20

Have you met anyone with the same illness?  Did it help?

I know quite a few people with all or some of the same illnesses I have.  It helps immensely.  It is always nice to know you are not alone.  We all need to be reassured that we are not crazy.

Monday, October 28, 2013

30 Day Chronic Illness Challenge: Day 19

How do you feel about the future?

This is a very odd day for this particular question to pop up.

Today I know of a young boy who slipped away in the early hours of the morning after a long and hard fought battle against leukemia.  The early hours of the morning also took a woman I will forever hold dear to my heart.

I think... the future is not guaranteed.  We make plans for the best while preparing for the worst and try our hardest to enjoy every moment to the best of our ability.

Sunday, October 27, 2013

30 Day Chronic Illness Challenge: Day 18

Do you think you have become a better person through being ill?  Explain.

I don't think being ill has changed the type of person I am.  It has made me a lot more aware and sensitive to other people and what they may be experiencing... but I'm not sure that makes me better or worse in any way.

Saturday, October 26, 2013

30 Day Chronic Illness Challenge: Day 17

How would things be different if you weren't ill?

I wouldn't be ill.  Other than that I find it kind of silly to speculate how things would be different.

Friday, October 25, 2013

30 Day Chronic Illness Challenge: Day 16

What is your favorite inspirational quote? 

The best time to plant a tree was 20 years ago. The second best time is now. 
                                                                                –Chinese Proverb

Thursday, October 24, 2013

30 Day Chronic Illness Challenge: Day 15

What would you say to people newly diagnosed with this illness?

You are about to get up close and personal with who you really are and what you are all about.  Learn to love yourself.  Surround yourself with positive people.  Find a doctor who will LISTEN.  Don't expect anyone else to make you feel better.

Most important of all - Never give up.

Wednesday, October 23, 2013

30 Day Chronic Illness Challenge: Day 14

List 5 things for which you are grateful.

1.  My family
2.  My friends
3.  My sense of humor
4.  A forum to express myself to people who are in a similar situation.
5.  Love

Tuesday, October 22, 2013

30 Day Chronic Illness Challenge: Day 13

Has your illness had any affect of your mental health?  Explain.


My health started to change during a combination of very unfortunate events.   Any one of these things would have been enough to cause anxiety but I feel that the number of factors happening at one time made the issue much worse.  With the help of therapy and anti-depressants I worked through a large part of my depression issue but was still left with Generalized Anxiety Disorder.  I find it very difficult not to worry about being blindsided by pain and illness again.  A lot of times I don't even know what I'm worried about, I just can't shake that feeling that something is about to go horribly wrong.

Working through this... looking for the magic combination of calming my stress, and probably medication.  I have hope that once my sleep situation is worked out a little better that this will go a long way to helping calm my busy little mind.

Monday, October 21, 2013

30 Day Chronic Illness Challenge: Day 12

Briefly explain to a healthy person what it is like to live with this illness.

It's sort of like living in Groundhog Day...

But you know, it's not all bad.  Sometimes crazy hijinks ensue.

Sunday, October 20, 2013

30 Day Chronic Illness Challenge: Day 11

Why do you believe you have this illness?  Bad luck, a higher power, something else?

I don't think it has anything to do with luck or a higher power.  It just is.  I honestly don't spend a lot of time thinking about this because it is a wast of my energy.  There is nothing to do about how I got, or why I got these illnesses.  I would much rather spend my time focusing on making the best of what I have.

Saturday, October 19, 2013

30 Day Chronic Illness Challenge: Day 10

What little things make your life easier?

Heating pads - Especially the adhesive ones you can wear and still be productive.
Netflix - If I'm going to be stuck in bed I might as well be entertained.  I have been known to catch up on episodes while on the exercise bike too...
Crockpot - even on super bad days I can feel as though I contributed something by putting dinner together.
Backpacks - while not as stylish as a purse, it distributes weight evenly and helps me move through the world.
Setting reminders in my phone - very helpful on a foggy brain day

Autumn Udi's Goodies

I was fortunate enough to receive some delicious Udi's seasonal goodies to tell the gluten free world about.  I am always excited when this happens because I seem to live in an area where the grocery stores I frequent (Martin's, Kroger, and Wholefoods) never seem to get the seasonal items.  Keep an eye out for these products and if you don't see them on the shelves make sure you say something to your grocer.

The pumpkin muffins are delicious but a bit sweet for my taste as a breakfast food.  They would make a wonderful mid-morning nibble or afternoon snack.  These muffins are very dense and pack a huge pumpkin flavor.

The ginger cookies are super chewy and fabulous.  Enough ginger flavor to make them a little zippy but not so much that they become overly spicy and hot.  I would recommend enjoying a few of these gems with a mug of hot apple cider and a good book.

Friday, October 18, 2013

30 Day Chronic Illness Challenge: Day 9

Have you ever tried any alternative therapies?  If so, what?  Did they work?

I have tried a lot of different teas and melatonin to get to sleep.  They help in the falling to sleep department most of the time but they do nothing for the quality or quantity of sleep I end up getting.

I have tried changes in my diet.  The only one that has stuck is that I have been gluten free for 3 years - mostly because I feel like I'm going to die immediately upon consuming it...

I have not tried massage therapy.  As a former massage therapist I would have to say that the particular brand of pain I experience would not be helped by massage.  Especially on the days my skin feels like it is on fire.

I have considered trying acupuncture but have not yet gone down that path.

Long story short - I would rather use an alternative therapy, have yet to find one that does the trick for me.

Thursday, October 17, 2013

30 Day Chronic Illness Challenge: Day 8

Where do you see yourself in 5 years?

I see myself having come a long way to accepting and coping with my illnesses.  I see myself enjoying the life I have.  I also see myself turning one of my ridiculous number of hobbies into a career.  I'm not going to age though.  I'm putting an indefinite moratorium on aging.

Wednesday, October 16, 2013

30 Day Chronic Illness Challenge: Day 7

What is the biggest realization you have had?

I am a lot stronger than I give myself credit for.  I also have a horrible habit of standing in my own way.  I'm working through this slowly but I'm also fighting against a horrible stubborn streak.

Tuesday, October 15, 2013

30 Day Chronic Illness Challenge: Day 6

If you could have told yourself something when you first remember these symptoms arising, what would you have said?

Don't put anything off.  If you want to do it, do it now.

Monday, October 14, 2013

30 Day Chronic Illness Challenge: Day 5

How does being chronically ill make you feel?

Physically:  I have shooting pain, dull achy pain, throbbing pain, pulsing pain, burning pain and spasm pain.  I also experience numbness.  I have constant nausea.  I am exhausted 75% of the time, the other 25% I'm just tired.  Sometimes I feel terrified for... some reason I guess.  My body hasn't let me in on the secret of what that reason is yet.

Emotionally:  So many feelings... so, so many feelings.  I feel mad.  There are so many things I want to do that are now a hundred times more difficult to accomplish.  I feel sad.  Sometimes I feel sorry for myself because things aren't *fair*.  I know life isn't fair but you know what, that doesn't mean I can't be pissed off about it from time to time.  I feel misunderstood.  I feel judged.  I feel helpless.
I also feel challenged.  There are days where I feel like I am clinging on at rock bottom but one thing I will never do is give up.  I might be stuck in bed today but rest assured that the next time I have a good day I will live the crap out of it. 

Sunday, October 13, 2013

30 Day Chronic Illness Challenge: Day 4

How have your friends and family reacted to it?

My husband and my children have been wonderful.  I could never expect anyone to be more supportive.  I have quite a few family members who also live with chronic pain and they are understanding.  I have other family members who try to understand.  I appreciate that they try.  I have also felt some doubt from a few, and that's OK.  I am not in a position where I can allow other peoples opinions of my illness to affect me.

I have a group of very supportive friends.  These are people I know I can count on. These are the people who ask me how I am doing and genuinely care about my answer.  Some of these people I only keep up with through facebook, email, and text but their friendships mean a lot.  The group of people I used to call friends has become more of a list of people I now call acquaintances.  This has a great deal more to do with me and my need to simplify to survive than any of them specifically.

I have heard and read horror stories about how people are treated by those who are supposed to love and support them through situations like this and it breaks my heart.  It also makes me appreciate the people in my life who support me even more.

Saturday, October 12, 2013

30 Day Chronic Illness Challenge: Day 3

How did you get a diagnosis?

I was diagnosed with IBS by my Gastroenterologist.  I have had 3 upper endoscopies, 1 colonoscopy, and 1 capsule endoscopy (I got so swallow a camera pill).  The reason for most of these tests developed after having my gallbladder removed.  I also have a hiatal hernia, a slight problem with bile pooling in my stomach, and a gluten intolerance though my biopsy came back negative for Celiac Disease.

I was diagnosed with Generalized Anxiety Disorder by my psychiatrist.  It was pretty obvious...

I was diagnosed with Fibromyalgia by several doctors but we'll just go ahead and say it was the Rheumatologist I recently saw since he was the most thorough.  Everything imaginable or at least reasonable was ruled out with blood tests and a physical examination.

Friday, October 11, 2013

30 Day Chronic Illness Challenge: Day 2

How have these illnesses affected your life?

Oh my... well, I'll start with the fibromyalgia I suppose.  Fibro has made it a challenge to plan my life.  Not in regards to long term goals but in day to day things that need to be done.  Sometimes I can get a to do list finished and some times I can't.  Now, this is no different from the way it was before and I'm sure is true of many people who do not have a chronic illness.  The differences now are the reasons why the to do list gets behind.  Instead of being distracted by a different activity, I'm distracted by pain.

Fibro causes me to dress for comfort.  This has pretty much always been the case but has become even more of an issue.  I cannot wear certain fabrics.  I cannot wear shirts with tags.  I cannot wear shoes that do not provide proper arch support.  Not even just to be cute for a little while.  I cannot tolerate strong smells, loud noises, or bright lights.  I cannot tolerate heat, especially humid heat, and I ache when I get cold.

How has my life been affected by IBS?  Well, there aren't many ways my life hasn't been affected by IBS.  My diet is always being adjusted and scrutinized.  I have become best friends with my hot water bottle.  I also have a microwavable heat buddy and those stick on heat patches are pretty great for when leaving the house can't be avoided or when knock you down with pain spasms start away from home.  Figuring out how to handle being on medicine that affects my body's ability to regulate its temperature has been interesting.  That little pill friend gets saved for extreme emergencies.  I am familiar with the location of the restroom in every establishment I frequent.  When I find myself in a new location my first order of business is to locate where the restroom is, and to perform a complicated mathematical equation to determine how quickly I can get there, should the need arise.  I have many more good days than bad, especially now that the issue of my anemia has been resolved.  Oh!  And no more coffee.  No. More.  The repercussions are so bad I gave up COFFEE.  Luckily I have been able to replace my morning cup of coffee with hot tea so at least I can still enjoy a little morning energy boost.

Generalized Anxiety Disorder is probably the most aggravating issue I deal with.  Irrational thoughts and worries.  Nine times out of ten I don't even know what brought on the anxiety attack.  I take anxiety medicine on an as needed basis.  Sometimes I can go months without needing it.  Other times I need it daily for up to a week at a time.  No rhyme or reason.

The worst affect of any of these illnesses without a doubt has been time lost with my family.

I'm sure I will think of a handful of ways my illnesses have affected me as soon as I hit publish but... these are the ones that jump to mind.

Thursday, October 10, 2013

30 Day Chronic Illness Challenge: Day 1

Hey, look guys!  I found a blog challenge...

Introduce yourself.  What illnesses do you have?  How long have you had them?

Hi, my name is Jenni.  I have been married for a wonderful ten years today! - Happy Anniversary!  I'm mommy to two very energetic little girls and I have a ridiculous number of hobbies.

I have Fibromyalgia, IBS, and Generalized Anxiety Disorder.  I was diagnosed with IBS in 2011, Generalized Anxiety Disorder in 2012, and Fibromyagia in 2011 though I just had the diagnosis confirmed by a Rheumatologist this year (2013).

Tuesday, October 8, 2013

Invisible Illness Sucks.

I'm still not sure how to speak, write, or feel about being sick.  So, with that in mind I give you blog post...
I've always been really awkward anyway so this will probably work out just fine.

I finally bit the bullet and went to see a Rheumatologist.  He was by far and away the best doctor I have seen so far.  He spent an entire hour with me.  He listened.  He asked questions.  He did a physical exam.  Oh yeah, and he LISTENED.  Many more tests were ordered, all of which came back completely fine.  Yay! and... really?  It's a confusing place to be.  Of course I'm happy I don't have a terminal illness!  Of course I'm glad I don't have an auto-immune disease! But you know what pisses me off?...  There is no way to fix this.  And something that pisses me off even more... there are people who do not believe it is a real condition.  Invisible illness sucks.

I can go from fine to bedridden within hours.  I can go from fine to feverish in seconds.  I can be super domestic goddess one day and super slacker forget everything mom the next.  I can be walking happily one minute and then HAVE to sit down the next.  Some days I can go miles on my bike.  Some days looking at my bike makes me need a nap.  Some days I can wear whatever I want.  Some days my favorite shirt feels like it is flaying the flesh from my body.  My thoughts derail mid-sentence.  I am tired all the time.  Unless it is bedtime in which case I am wide awake.

I have but one request:  Please do not offer me unsolicited medical advice.  If you have heard of it I'm going to go out on a limb here and say that I have known about it for a while.  There are many networks of people who are living this and we all work together to stay informed of research and our options.  Also, you are not my doctor... unless my doctor happens to be reading this.

If you want to help, the best thing you can do is listen.  I have days when all I want to do is complain.  I complain because I hurt.  Hurting sucks.  Also, I still like to do things.  I might not be able to do super fun active things, and I might have to leave early, and I might have to cancel at the last minute, but I still like to do things.

If you would like some sort of understanding of what it is like to live with chronic pain:  Get a clothespin.  Put the clothespin on the end of your finger and go about your day.  How far did you get?  Now imagine never being able to take the clothespin off.  Ouch.  Am I right?  I can't take credit for this analogy but it gets the job done.

I guess I'm at the point where I'm ready to work through being mad about being sick and move forward.  This is the point where when you ask me how I'm doing I'm going to be honest.