Wednesday, December 7, 2011

Anniversary... and not the good kind.

Happiness.  What is it?  How do people get it?  Right now, I really don't know.  I know how to pretend to be happy.  I know how to lie about being happy, to myself and others.  But how can I be truly happy?

This week marks 2 years since I have been officially ill.  I quit working as a RN 2 years ago this week.  Shortly there after my dysautonomia/POTS symptoms kicked in hard.  So, I mark this week as my official start date of my illness because it was when I started getting really sick and because that was when my whole life turned upside down.

Needless to say, I'm not dealing well with this "anniversary".  When I quit working, I never expected it to be permanent.  I never expected my illness to be permanent.  I have thought that I have accepted my illness and all of the life changes that come with it.  However, with this anniversary, I realize that I haven't.

Part of me is still waiting for my life to return to normal.  I still feel like my life is just on hold.  For instance, I used to keep up with the pictures I take of the family, special occasions, etc.  Meaning that I would go through all of the digital pictures we have taken, delete the bad ones, order prints of the good ones, and organize them by year in photo boxes that I have.  I addition to that, I would make sure there are up to date pics of my daughters framed on the walls.  However, I have not done any of that in the past 2 years.  Subconsciously, and maybe even consciously at times, I am waiting until I am better to take care of our pictures.

That's just one example.  I catch myself sometimes thinking "When I get better, I'll..."  But I'm not going to get better.  That's still so hard to say.  I have gone through the stages of grief, because, as you may already know, the stages of grief are not just for dealing with death.  They're for dealing with loss of any kind.  I suppose, in a way, I am dealing with death.... the death of my old life.  I thought I had reached acceptance.  However, recently, I have regressed.  I have been back in the stage of denial with a little anger and depression mixed in.

Why?  Why did this have to happen to me?  I had so many plans for my life.  I'm ready for this to be over now.  I've dealt with this mito crap long enough.  I'm ready to move on.  I'm ready to go back to work.  I'm ready to be a good mom again.  I don't want to be the sick person.  I want to take care of sick people.  I'm ready for my parents (and others) to be proud of me again.  Hell, I'm ready to be proud of myself.  I'm ready to be able to do something with my life again.

I want to get out of this chair, bed, or couch.  I want to do the things that I love doing.  I want to enjoy life.  I want to smile.  I want to make plans for my life again.  I want to have self esteem.  I want my life to be something other than sickness.  I want to be known as something other than a woman with mitochondrial disease.  This feeble, useless, sick person who relies on others to take of her.  I want to be known as the strong, intelligent, and kind woman who helps others and is a wonderful friend, mom, and wife.  I'm no longer any of those things.  I'm no longer strong, I'm weak.  I can no longer consider myself intelligent.  My mind has been hit by mito and my daughters finish my sentences for me.  I am no longer a wonderful friend, mom or wife.  I can't do anything for the people I love.  They have to wait on me all the time.  I require so much from my relationships that I could never return the favors and love I've received.

I want to help people instead of people helping me.  I hate it.  I love helping people.  Just knowing that I did even one small thing to help someone makes a difference in my life.  But I can't do that anymore.  Instead, I have to rely on others helping me.

All I want for Christmas this year is a cure.  I know, there's no way in hell.  Okay, how about this... What I want for Christmas is for everyone in my life to truly understand what I'm going through.  Just one day in my head and in my life.  I just want everyone to understand why I act the way I do sometimes.  I want everyone to understand why I am so needy... so needy of love and support.

It's been 2 years, and I'm ready to go back to my old life.  However, instead, it's 2 years down, 50+ to go (I hope).

Sunday, November 20, 2011

Friends... or not

I have learned a lot about friends over the last couple of years since I first got sick.  I have also learned a lot about myself.  I've never been one to have a lot of friends.  I'd rather have just a couple real good friends than to have a lot of not so good friends.

I have really struggled with friends over the last couple of years.  I've lost friends (or people I thought were friends).  I've gained friends and then lost them again.  And I've gained friends who I hope will become better friends over the years.

Friendships are so hard when you have a chronic illness.  First of all, I'm a different person than I used to be.  My self-esteem is a lot different than it used to be.  I've never been one to have an extremely high self esteem.  So the fact that it's been even lower since I've been sick has not been good.  I'm a lot more selfish than I used to be.  And I'm a lot more needy than I used to be.  Surprisingly to some, I am aware of both of those things. All of those qualities have made friendships difficult.  I know that.

I do tend to fault others a lot for my friendships failing.  However, a lot of it is my fault.  I expect a lot more out of my friends than I used to.  But, then again, I need a lot in this phase of my life.

Prior to getting sick, I was able to take care of myself physically, and most of the time, emotionally.  But the emotional toll my life had on me was no greater than most others.  I never needed someone to help me get to a doctor's appointment.  Of course, I never went to the doctor either.  I never needed someone to help me fix my meals, take care of my kids, etc.  Now I do.  And I rely on my friends sometimes to help me with those things.  My friends have their own families and lives to take care of.  They don't need to deal with taking care of mine as well.  That, then, leads to guilt.  I still struggle with guilt a lot.  That, I'm sure, has an effect on my friendships.

I also need a lot more emotional support than I used to.  Feeling like shit 24/7 takes a toll on a person.  That, of course, reflects back to my friends.  And with feeling awful all the time, I, then, end up complaining every now and then.  I really do try hard not to, but when your whole life revolves around the way you feel, it's so hard to not complain every once and a while.  It's also hard to lie all the time.  I do try though, because I wouldn't want to listen to someone complain all the time.  No matter how good of a friend they were.

I need a lot of support in other ways as well.  For instance, in the last 6 months there have been 2 fundraisers I've been involved in.  One of which was held by me, for me.  The other was to raise money for the disease that has changed my life so drastically and makes me feel like crap all day, every day.  Both of these things were VERY important to me.  Here we go back to how I expect a lot out of my friends.  If something is important to me, I would expect it to be important to my friends and family.  Therefore, if these two events were not important to someone in any way, then they must not be much of a friend.

I need a lot of understanding.  I may not always feel like talking on the phone when a friend calls.  It's nothing personal.  Then again, I would be sad if my friend(s) didn't call me but once a month or two.  I don't have the energy, or feel well enough to be able to go out to meet my friends.  I can't do the same thing with my friends that I used to be able to do.  All of this requires patience and understanding from my friends.

I know I am not the best friend a friend can have, but I do try.  I try to listen.  I try to be there for my friends when they need me.  I am always available to be a listening ear and/or a shoulder to cry on.  I may not be as fun as I used to be, but I try.  I try to let go of my pain, fatigue, and nausea when I'm with my friends so I can be a friend, not just a sick person.  I try not to ask too much of my friends so they remain my friends and not my helper/caretaker.  I do try to be a good friend.

With all of this being said, I don't know what to do anymore.  There are friendships that are hanging on by a thread.  I feel as though I'm the only one putting forth the effort to keep it alive, even if it's not much.  In fact, since I started writing this post a month ago, I have kind of given up.  With as sick as I have been feeling recently, I don't feel like I have the energy to make it work anymore.  Then again, part of me wondered if I disappeared, would it be noticed?  Well, I'm leaning towards "no".

Part of me understands; part of me doesn't.  Would I want to be friends with me?  I suppose the answer is "it depends".  It depends on how close the friendship was prior to me getting sick.  I probably wouldn't really want to be friends with me right now.  However, if the friendship was strong prior to the drastic changes in my life, I think I would do whatever I could to keep the friendship strong.  Then again, you never know what you would do until you're in that situation.

Maybe it's all just hopes and dreams.  I just wish that someone would still want to be my friend despite all the changes I've gone through.  I just dream of having a friend(s) that would go out of their way to help me through this shit that is my life.  I see/hear stories of people going through what I'm going through with friends or siblings who go out of their way to raise money for a cure, keep them company because they're housebound, or just generally make them feel loved.  Unfortunately, I'm not one of those people.

I have to ask for anything I need or want.  Whether it's help with anything from a cooked meal to chores around the house, help raising money for a fundraiser/charity that means a lot to me, or just a friend to talk to and laugh with.  Recently I have given up.  If someone truly loves me, they'll still be there, whether I ask or not.

Unfortunately, I see some friendships fading away.  Friendships that I thought meant a lot.  I know, friendships come and go throughout life.  However, Sometimes you have friends who you think are special and will be there for a long time, no matter what.  Friends who you think will be there for you no matter what.  Friends who you think will still be there, even if (and especially when) your whole world has turned upside down and you're not the same person you used to be.  It's when those friendships fade that you feel like you have lost something/someone truly special in your life.  I suppose it's just one more thing for me to grieve that I have lost from my "other" life.

I miss friends... not just my friends, but friends.  As I get more ill, I need friends to cheer me up, make me laugh, give me a shoulder to cry on, or just to let me know that I'm going through this alone.

I will get through this... just as I get through everything else.

A few quotes about friendship...

"The most I can do for my friend is simply be his friend."  - Henry David Thoreau

"The real test of friendship is: Can you literally do nothing with the other person?  Can you enjoy those moments of life that are utterly simple?"  -Eugene Kennedy

"True friends stab you in the front."  -Oscar Wilde   (LOVE this quote.  I have always said that I would much rather have someone tell me that I'm a bitch to my face than behind my back.  Then again, those people are hard to come by.)

"When a friend is in trouble, don't annoy him by asking if there is anything you can do.  Think up something appropriate and do it."  -Edward W. Howe  (I swear this didn't just come from me.)

"Sometimes you put walls up not to keep people out, but to see who cares enough to break them down."  -unknown

"Most of us don't need a psychiatric therapist as much as a friend to be silly with." -Robert Brault

"True friendship isn't about being there when it's convenient; it's about being there when it's not."  - unknown

"A friend is the one who comes in when the whole world has gone out." -Grace Pulpit

"When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand.  The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares."  -Henri Nouwen

"I miss friends.. not just my friends, but friends."  -Robin J.

The good news, and the bad

Last week I started up with palliative care.  Palliative care is basically a service that helps people with serious chronic illnesses.  They give me access to a nurse, nurse practitioner, physical therapist, social worker, and more and they will all visit me at my house.  As I have become more sick over the last couple of months, especially over the last month, this will help me a lot.  They will be able to help me with my GI problems more than anything.  They help with pain too, but my pain doc has been wonderful with that.

Over the last few weeks/month I have been tolerating less and less activity.  Very little activity wears me out completely.  I get sweaty and hot, nauseous, extremely fatigued, dizzy, and I get a horrible headache.  This has been happening with less and less activity recently.  I don't know if it's because I'm not eating and drinking enough due to my GI motility issues or just because my disease is progressing.

Last week I needed to visit Hobby Lobby to get a few things.  I enjoy going by myself and being able to take my time to pick out the things I need for my "creations".  So, I went, by myself, but I took my electric wheelchair, of course.  I wouldn't get far without that.  I browsed through the store for about an hour.  When I left there I was feeling pretty ill.  Basically feeling all of the things I stated above.  However, I thought I could just come home, take a nap, and I'd feel better.  Well, I came home, took a nap, and felt worse.  I ended up vomiting and unable to keep anything down for 16+ hours.  I barely slept that night due to a horrible headache.  I was sick the whole next day as well, but luckily I was able to keep some fluids down starting the second half of the day.

What I have figured out, through talking to others and my own presumptions, is that my dysautonomia is causing my autonomic nervous system to go haywire after too much activity.  I am, therefore, really sick for 24 hours.  That is why the Zofran I take for nausea doesn't do anything at all when I'm going through those vomiting spells.  I have been having this problem more and more recently when I do much activity at all.

This is a bit depressing to me because, as they say, if it hurts, don't do it.  Well, if activity makes me sick, I shouldn't do it.  Right?  Well, that f'n sucks!  An hour out of the stinking house makes me sick?  Great.  So now I'm completely house bound?  Well, anyone who knows me knows that that's the death of me.  Being practically bed/couch ridden due to this disease has been hard enough as it is.  I already hardly left the house because I couldn't tolerate it.  Well, I could always just push through it.  The more I would push through activity before, the more I would just have to rest afterwards.  Now, the more I push through activity, the sicker I will make myself.  That won't work.

Due to my extremely slow GI motility, I'm unable to drink or eat much at all.  I'm only getting about 750ml of fluids down a day, at the most.  That's the equivalent of about 3 eight ounce glasses.  With dysautonomia, I should be drinking a bare minimum of 8 eight ounce glasses of fluids a day, but probably closer to 12 eight ounce glasses.  In addition to that, I couldn't tell you how many calories I'm getting per day, but it's not much. Many days I live off of vanilla pudding and lime sherbet.  Mmmm!

The good thing is, if I get really sick like I did earlier this week, I now have a home health nurse to call instead of having to go to the ER.  If I get too dehydrated, they should be able to give me IV fluids at home too.

So... bad news - I'm still getting worse.
good news - palliative care should hopefully help

Until next time...

Monday, November 14, 2011

Jewelry and Hair Bows

If you haven't already, check out my shop, DK Jewelry and Designs.

Here are just a few of the products available...

Tuesday, November 8, 2011

DK Jewelry & Designs

DK Jewelry and Designs is open for business.

Prior to the Energy for Life Walkathon in September 2011, I had decided to reward the top two fundraisers on my team with a gift.  That gift was a Mitochondrial Disease Awareness bracelet made by yours truly.  I enjoyed making those two bracelets and received so many compliments that I decided to continue making them and selling them.  I have also been making hair bows for my 5 year old daughter in the last few months that have received compliments as well.  Therefore, DK Jewelry and Designs was born.

Please take a few minutes to visit my online store.  If you don't see anything that fits your taste exactly, please visit again soon.  All of my designs are created individually and each one will be different.  I will be listing new bows and jewelry on a regular basis, so come back often.

I will be featuring many different designs in my store, including Mitochondrial Disease Awarenss jewelry and bows.  Twenty percent of the proceeds from each Mitochondrial Disease Awareness item sold will be donated to the UMDF (United Mitochondrial Disease Foundation).  However, please keep in mind that the proceeds from every item sold will go toward the medical bills of a patient with Mitochondrial Disease.  ;-)

Please tell all of your family and friends.  After all, the best way to gain customers for a new business is through networking.

Online store -

http://www.etsy.com/shop/DKJewelryAndDesigns

Facebook page - Please take a moment to "Like" my page

DK Jewelry & Designs on Facebook

I can't think of a creative title, so I won't, so this post won't have a title.

So it's been about a week since I've posted.  I think I'm due.  I don't have a TON of stuff to say for a change.
I know, I know.  You don't believe it.  Well, believe it.  Actually, you can believe it when you get to the end of this post depending on how long it ends up being.

I actually had a decent day today.  I am learning more and more how to deal with my GI problems.  I have officially abandoned mealtimes.  Well, actually, I have decided to listen to my body instead of the clock, mealtimes, or when others are eating.  This is going to be a work in progress.  After approximately 29 years (yes, you read that right) of eating based on one of those 3 reasons, it'll be difficult to change.

I have, for the last couple of years, had to make sure that I'm eating on a regular basis because if I waited too long, and my stomach got too empty, I would get very nauseous.  Now that my GI system has slowed down to a snails pace, I don't have to worry about that too much anymore.  That gives me an idea...  Maybe I should eat a live snail at the same time as some corn and see which one comes out faster.  Hmmm...  Nah!

So I sent the hubby to the store a couple of nights ago to get a few things... fudge bars, jello, pudding, popsicles, sherbet, etc.  I have given up on trying to eat what everyone else is eating and/or what I think I should eat, and then just vomiting it up later (or laying in bed feeling like I'm going to for 3 hours).  So, instead, I'm going to eat something light when I feel like eating.

I'm still not getting enough liquids throughout the day.  Water makes me nauseous.  I have switched to lemonade because having something with a taste to it helps a little.

Last week someone recommended to me that I try to get palliative care.  So, I called someone at KC Hospice and Palliative care.  I was very happy after I spoke with someone there at the beginning of the week because it actually seemed promising that I would qualify for some help and that what they would do would really be helpful for me.  However, right before my meeting with the nurse, they realized that I didn't want hospice.  !!!!  WTH!?!?!  Of course not!  She either didn't listen to me at all, or she mixed me up with a different patient.  That got worked out and they sent a palliative care nurse out to see if I qualify instead of a hospice nurse.  However, when she got here, I learned that in order to qualify for palliative care, I need to have a need for a registered nurse (i.e. a catheter, surgical incision that needs dressing changes, IV fluids, etc.).  I explained to her that I was wanting help navigating the system, especially to help me obtain IV fluids through home health on a regular basis.  But, since I don't already have them, I don't qualify.  I really think a lot of time could have been saved if two things would have happened.  1. The person I talked to on the phone would have listened to my situation better, and/or taken better notes. And 2. She would have told me over the phone that I need to have a need for a home health RN before I would qualify for palliative care.

Ahhhhh.... I just LOVE being on this side of the medical field.  And now, all the way from the nineties....   NOT!!!!

And since I'm in a good mood...

Thursday, November 3, 2011

The Place I'm In

I am not in a good place right now.  I was just getting settled in to my new life.  I was just starting to figure out how to live my daily life with the way I always feel.  I was figuring out the fatigue, the pain, the weakness, the depression.

Is there something wrong with figuring things out?  There must be, because whenever I do, things change.  I know.  I know.  That's life.  But can't I have just a little bit of normalcy?  Even if it is just my own normalcy.

I had figured out how much sleep I needed every night, how much activity I could handle before I needed to rest, and how much rest I needed before I could have activity again.  I finally figured out the right pain meds and dosage, how to best deal with my pain, and what I needed to do to keep it tolerable.  I figured out what I needed to use to keep me from getting too weak or to get around when I am weak.  I finally figured out how to keep my depression at bay.

So right when I might actually get to enjoy life a little, my body decided it wasn't going to have that.  My GI problems have kicked me in the ass.  No pun intended.  I have been so nauseous.  I can't eat.  I can't drink.  I can't enjoy a good meal like I used to do when I was feeling bad.  Nope.  I can't, because my GI system decided to go on strike.

I've had enough of this shit.  Things could be worse, you say?  Yeah.. I know... I know.  I really don't want to hear it.

I finally went to the ER yesterday.  After being incapacitated from headache/migraine pain and nausea all day on Tuesday and then waking up feeling worse on Wednesday, I finally decided to do something about it.  I was so weak yesterday that I was barely able to get up and around to go to the bathroom.  I figured it was because I was so dehydrated.  I got 2 liters of IV fluids while in the ER.  It did help my headache.  It's still there, but I am able to function now.  (btw.. migraine meds did not touch it like they normally do.)  It did help my weakness and fatigue.  It's still there, and worse than normal, but better than it was Tues. and Wed.  I'm not getting around much without my wheelchair, even in the house.  Normally I will walk around a bit in the house throughout the day.  Problem is, in another week I'll be right back where I was.  I just can't drink or eat enough each day to keep my head above water.

You know, I knew Mitochondrial Disease was a progressive condition.  However, I guess I didn't think I was going to ever get worse.  I had come to terms with the fact that my life had changed drastically and I wouldn't be able to do the things I used to do, but I obviously didn't come to terms with the fact that I may still get worse as time went on.

Isn't what I was dealing with enough?  Do more symptoms/problems really have to arise?

In addition to the physical symptoms, I am feeling a bit down that I'm not really feeling the love from friends and some family.  I really need support right now and some people were blowing off my visit to the ER like it was a visit to walmart.  I wouldn't go to the ER unless I was really sick.  But I guess this is just my life and me going to the ER is like everyone else going to walmart.

Another thing... how is it that I feel so incredibly bad but all of my tests always come back normal?

You know.  All I really need is to feel better.  To be able to eat a freaking meal, or drink a few sips of water for that matter, without feeling like I'm going to lose it before I'm finished.

I'm so tired of feeling sick all the time.  I'm tired of acting like I don't.  I'm tired of fighting.  Sometimes I just want to give up.

Saturday, October 29, 2011

Fun with doctors and poop

This has been another fun week.  This time, however, it was my fun instead of my whole family.

Beware... this is another post about poop.  If you don't like talk about poop or things related to poop... do not continue reading. (and if that's the case, you probably shouldn't be reading this anyway because that means that you must be in 3rd grade still.)

As I have discussed before, my GI problems have been getting a lot worse over the last month or more.  I posted a few details of this on Oct. 12th.  As a reminder, I have had 2 tests that my Gastroenterologist ordered. The first was a motility test to check the rate of motility of my stomach.  The second was basically the same thing but for my entire GI system: stomach, small intestines, and colon, a sitz marker test.  Both tests showed that I have extremely slow motility.  So, the last test she wanted to do prior to sending me to a colorectal surgeon for more tests that they would have to do is a colonoscopy.  She wanted to make sure I don't have any blockages that are keeping me from having a bowel movement.

Last Thursday was my lucky day; the day of the colonoscopy.  Now, in case you don't remember or you didn't read the post about it, I'll remind you that the sitz marker test showed that I had still not digested the entire pill after 19 days.  19 days!!!  Even without any medical knowledge you should know that that's WAY too long.  Most of it should be completely out of my system within 5 days.

However, my doctor did not put two and two together and come up with 4.  She had me doing the exact same prep for the colonoscopy that everyone else does.  Everyone else who is able to digest food in the normal amount of time.  So, she expected me to completely empty out my system in 16 hours.  There's a couple of problems with that.  First of all, that's not going to happen because my motility is extremely slow... which SHE found out with the tests that SHE ordered.  Secondly, for the last month or more, I have not been able to eat or drink much of anything because I get nauseous so quickly.  I have been dehydrated because if I drink more than a few sips of water at a time, I become nauseous.  However, she expected me to be able to drink 8oz of gatorade (mixed with miralax) every 15-30 minutes.  Hello!!!!  I can barely drink 8 oz in 2 hours right now.

Therefore, on Wednesday, when I was doing my bowel prep, I was nauseous the whole time and barely able to get it down.  I ended up getting half of it down.  I called the on-call doc to see what else I could do and let him know I was having so much trouble.  He recommended that I do an enema so I did.

So, the next morning I was getting ready to leave and realized I better call the doc to let her know my stool was not "clear" as instructed.  She said we could try again some other time.  I laughed.  Yeah right!  There was no way in hell I was going through that again!  I told her that as well.  She said the only other option was to go in and have the nurses give me enemas to try to "clean me out".  Joy!  But you know what, I wasn't going to go through everything I had already gone through for no reason.  So that's what I decided to do.

Well, I won't explain in detail what happened once I got to the hospital.  The basics... I had to have 4 tap water enemas.  THAT was fun!  There was one good thing that came out of all of that though.  I learned something about my problems.  I had to use the bedpan after the 3rd enema.  Well, I had no problems going then.  So, in other words, my body will not let me pass stool when I'm sitting up but I am more than able when I'm laying down.  So something is jacked up.  Of course, we already knew that.

I had gotten to the hospital at 9am and was not wheeled into the procedure room until 1230pm.  Keep in mind that the only solids I had to eat was a piece of toast on Wed. morning.  Aside from that, I hadn't eaten since dinner Tuesday night and it was 1230pm on Thursday.  Other than my one piece of toast, I was only able to have clear liquids all day on Wed. and nothing at all after midnight on Thursday morning (wed. night).

Prior to the procedure I had told 2 separate nurses to make sure to ask the doctor to give me at least 2 liters of fluids because of how dehydrated I was.  I have been dehydrated (at least for a person with mito and dysautonomia) for a month and then had to do the bowel prep which made me more dehydrated.  The doc knew I was having problems with dehydration because I had talked to her nurse a couple of weeks ago about getting me IV fluids since I couldn't get enough by drinking because of my dysmotility and, therefore, nausea.  However, I didn't get 2 liters of fluids.  In fact, I only got a little over 1/2 a liter.  WTH!?!?  I was already there.  I had to have an IV anyway.  What would it hurt???  It would have helped me SO much but they couldn't even do that one little thing for me!

Following the procedure, the doc talked to my mom who was there to take me home.  She did not even attempt to wake me up first to try to include me in on the conversation.  She had told my mom that I required a lot of meds to sedate me.  She named them all off and told her the dosages.  My mom, of course, had no idea what she was talking about so she told the doctor to write them down for me.  She said she would... but she didn't.  Not only that, but I don't think I needed that much.  I remember the nurse saying "I'm going to give you some versed now" and the next thing I know I'm waking up in recovery.  I was out cold with the very first dose she gave me.  So, unless I was talking in my sleep, telling them I was still awake and could feel everything, they were giving me meds that I didn't need.

In addition to that, the doctor wrote on the discharge paper that she had to stop because there was too much stool still and "the patient's discomfort."  Two problems with that.  First of all, if she would have given me a different prep based on the fact that it takes me a month to digest my food, there wouldn't still be stool in my system after 6 dulcolax, 1/2 can of miralax, and 6 freaking enemas!  Secondly, she's a bad judge of "patient discomfort" because I was out cold!

Lastly... If you've ever had a colonoscopy, you know that the doctor always gives the patient pictures from the procedure afterwards.  My doctor gave those pictures, along with the other discharge instructions to my mom.  One of those pictures was a of 3 pills in my rectum with a caption saying exactly that.  However, she did not say anything to my mom about that picture.  I think that's something that needs a little explaining.  How do I have undigested pills in my colon???  Why are they not digesting?

So, if you can't tell, I am NOT happy about the way things went.  I am completely and totally exhausted.  I have now felt like shit since Wednesday afternoon.  I will probably still need a couple more days to recover.  AND I still don't know anything more than what I knew prior to all of this.  In addition to that, I'm even more dehydrated than I have been because of the stupid bowel prep.

Soooooo.... I'm on the hunt for a new GI doc.  I have a friend who has mito who has recommended a GI doc down at KU.  I may be trying her out.  However, as with every other doc at KU Medical Center, her first available appt. is on Jan 15th.  Have I mentioned recently how much I absolutely love dealing with this disease?

I will post again soon (hopefully).  A lot of things are going to change.  I have not been doing well over the last month or more.  I know there is more going on with me right now than there ever has been but nothing is being done about it.  Part of the reason is me.  I know how extremely difficult, stressful, and tiring it is to get things accomplished in the medical community.  That's why I keep putting it off.  However, I need to take care of myself and my body.  So things are going to change.  I have a long list of things that I need to do to start making some changes in regards to doctors and the care I'm receiving.  It's not going to be easy.  So if you are someone close to me, and you would like to help, I am going to need it.

I will post again very soon.  In fact, I have a post that's already half written that I'll try to finish in the next couple of days.  In the meantime...

Much love to you all... if anyone is reading.  If not, I'm cool with that too.

Thursday, October 20, 2011

Energy for Life Walkathon

Better late than never...

I want to extend my full gratitude to EVERYONE who helped with the Energy for Life Walk.  I am so thankful for those of you who found a way to support me, Team CTS, and the UMDF.  Even if you were only able to give a few dollars, every little bit helps.  Your "few" dollars may not seem like much, but if 100 people gave $10 each, that would be $1000!  That's a lot of money.
Team CTS

The walk turned out great!  Here are the totals...

The Energy for Life Walkathon raised a total of $21,781!!!

We had a total of 33 walkers; 44 if you include the kids.  What a great turnout!

Team CTS raised a total of $5122!!!

We came in second place for total amount raised per team.  (Even though I think I'm the only one who was keeping track.)  The top team, Joseph Atchley's Team, raised $5858.  That team's leader is Deidra Atchley, one of two co-chairs and she has been organizing some sort of walk or run for mito for the last 8 years.  I think that raising almost as much as the person who was organizing the event is pretty darn good, if I say so myself.

The top two fundraisers, and the winners of the two prizes, were JoEllen Shelby, otherwise known as mom, and Janel Abrams.  They raised $525 and $435 respectively!  Way to go ladies.  They each received a beautiful (I'm a little biased though, since I made them) Mitochondrial Disease awareness bracelet.  Here's a picture of each of the bracelets...

I also want to give shout outs to a few honorable mentions who also did a wonderful job with fundraising.  Both JoEllen and Janel, and the people mentioned below all worked very hard at recruiting friends and family to walk with us and/or asking for donations/pledges.  I am so proud of everyone, but I want to give a special thank you to a few people...
Judy Jones - raised $370
Naomi Wolfson - raised $375
Claudia Noakes - raised $200
And all of the following people who donated or raised at least $100 - Barb Blake, Heidi Davis, Nathan & Krystal Dunahee, Jenn Forkenbrock, Chris Jones (he better!), Higher M-Pact, and Jane McGinnis

I, personally, raised a total of $1955.
There are way too many people who donated to thank each personally.  I had 40 donors.  Evidently being annoying as hell pays off.  ;-)  So, thank you to all 40 of you; 10 of which donated at least $100.

Higher M-Pact is an organization here in Kansas City that helps under privileged youth.   Renee and Tyrone Flowers started and run the organization.  Renee, and 3 teens from their program, donated not only money and time to walk, but also helped out by volunteering to help run the walk.  The 3 teens helped with some of the kids games they had going on at the walk.  How awesome is that!?!








Last, but certainly not least, I want to thank Pat and Jane Shelley, my dad and step-mom, for hosting a great after walk party.  It was so much fun.  A good portion of the team were not able to make it to the party, but it was so much fun none-the-less.  We had very yummy bbq, thanks to Dusty, the co-owner of my dad's company.  It was a great way to follow the walk and celebrate a successful walk.  What a great idea that was, guys, and it went off without a hitch!  You have done so much for me, and my family over the past couple of years.  I am SO very grateful for everything you have done.  Thank you!

The team Miranda's Right Hands came to the after walk party as well.  I had a very good friend from Kindergarten through adulthood, until we basically just drifted apart.  Her niece, Miranda, has mito, as well as all of the other females in her family; herself, her two sisters, and her mom.  What a small world, huh?  I was so shocked when I found out that info shortly after I was diagnosed.  Anyway, Jeneane, the friend I've had since I was 5, her two sisters, and their families all came to the party.  Holly, another girl I was friends with in elementary school, came as well.  It was so great to catch up with everybody.  To help you to know who's who in the pic below, I'll explain a little better.  Jeneane and I have been close friends since we were 5.  Lynette and Michelle are Jeneane's sisters.  I was also friends with Holly when I was little and she's still friends with Lynette and, I believe, Jeneane.  Lynette, Michelle, and Michelle's daughter, Miranda, all have confirmed mito.  Jeneane and their mom probably have it but have not been tested.
From left to right: Jeneane, Lynette, me, Holly, and Michelle

So, with all of that said, next year I will, obviously, have to raise my goals.  :o)  Next year, let's get 50 walkers.  My team fundraising goal will be $7500 and my personal fundraising goal will be $2500.  I think we can do it!

I am also planning on volunteering more next year.  So, the bad news is, plan on me being even more annoying next year.  :o)

P.S.  There are lots more pics from the walk at Energy for Life Walk Kansas City Facebook Page

What a week!

Well, we're now into the next week and I'm still wondering how we got through the last one.  It was definitely a hell week.

It all started Sunday night at 6pm.  Nope, it couldn't have started earlier in the weekend so we had some of the weekend to take care of it.  Anyway, my oldest daughter came into my room to show me her headband.  Well, not her headband, but the 2 lice crawling around on it.  Yippee!

We already dealt with lice about a month ago when I found them on my 5 year-old.  We thought we eradicated them, but obviously not.  Since it was basically dinner, we went ahead with dinner then went to the drugstore to get the shampoo.  This time we decided to do all of the girls.  So that night my wonderful husband washed the linens from our bed and my oldest daughter's, as well as all the towels.  Since it was getting late, we didn't have time to do my 5 year old's sheets and hair that night before bedtime.  So Chris spent 2 1/2 hours on mine and my daughter's hair alone.  That doesn't count the amount of time he spent doing laundry.  We were all (Chris, Kylie, and I) finally able to crash around midnight.  Chris went to work the next day while Kylie stayed home.  That's funny.  I almost said "Kylie and I stayed home", but then I realized that's a given.

So, the next night, Chris did my youngest's hair and linens.  Yes, she went to school that day.  I figured she'd already been to school for the last month with it anyway.  What's one more day?  Besides the fact that the school doesn't even have a policy for lice anymore anyway.  I made sure to let them know asap a month ago when she had it and I was informed that they don't do anything.  The nurse doesn't check the other kids, which they used to do and they don't send home a note to the other parents.  They also don't check to make sure she's nit free when she comes back.  So, like I said, why keep her home and therefore, have to have Chris stay home with her.

So anyway...  Monday night was another 2 hours of work on our 5 year-old's hair as well as time to wash her sheets and blankets.  He also had to re-check our oldest's hair again and pull nits out.  That added another 30 minutes to an hour.

Tuesday night... More re-checking.  Luckily, the person we hired to help us with stuff twice a week came on Monday and Tuesday so she took care of vacuuming all the rooms and doing the other laundry that was starting to pile up.  So worth spending the extra money for her help!

Wednesday... I was extremely sick.  I couldn't keep anything down all day.  Granted, I haven't been eating much to begin with since I'm constantly nauseous.  However, I had a killer migraine/headache and was so nauseous I was afraid if I moved I would vomit.  And, since I had to move, I did.  That didn't make my headache any better.  So my pain was awful and I was nauseous as all get out.  Luckily, my mom came over to help with the girls when they got home from school because I, like I said, couldn't move.  Then, in the middle of the night, Danica, the youngest, woke up complaining of stomach and throat pain.  Sure enough, she was burning up.  Yippee... she's sick!

Thursday... Danica was extremely sick.  She would not let me leave her side.  That's what being a mom is all about though, right?  Even though I was still feeling awful myself, I took care of her the best I could.  There's no way I could've done it on my own though (I have trouble taking care of her when we're both having a good day), so Chris stayed home from work.  She had a high fever all day and vomited once in the morning.  However, she complained of pain, just about everywhere, all day.  It's soooo hard to see you're kids sick.  It makes me so thankful that I'm the one with mito, not my kids.

Friday... Danica was still very sick.  Continued high fever and a lot of pain.  She, at many times, didn't even want to watch tv.  She wouldn't want to do anything.  You really know your 5 year-old is sick when she doesn't want to watch tv, or do anything else for that matter.  Chris stayed home from work that day as well.

Sat... Still sick, but getting a little better.  Her fever would at least go down with motrin now.

She remained sick Sunday and Monday. Once again, luckily, my dad and step-mom were able to help out on Monday.

That week really shows how awesome my husband is.  He proves it to me all the time, but it's situations like that that really prove it.  He didn't complain one time.  I don't know what I would do without him.

Wednesday, October 12, 2011

Ahhh... Vomiting is fun!

Not really.

Sorry I haven't updated much recently.  As I've discussed in my previous few posts, I have not been doing well recently.  My GI system is so messed up right now.  And that's putting it lightly.  I finally found out today the final results of one of the tests I had called a Sitz marker test.  For this test, I had to take a pill that contains a bunch of very small rings that can be seen by xray.  I had a xray 5 days after taking the pill.  I should've had another xray a few days after that, and another one a few days after that.  However, my GI doctor screwed up.  Soooo... instead, I ended up having a xray 5 days after taking the pill and again 19 days after taking the pill.  However, it still showed my doctor what she was looking for: dysmotility. There are 24 rings in the pill that looks like this...  

I don't know exactly how many I had in my system on day five.  I talked to someone in radiology (because of the screw up) and she counted while I was on the phone.  She ended up saying... "a lot."  I still had a couple of those rings in my system on day 19.  So, in other words, it takes me almost a month to digest my food.

I didn't really need the tests to tell me that my GI system isn't moving.  Especially after today.  I have had an AWFUL day.  I woke up this morning actually feeling okay.  Then, I just knew it was going to be a good day after I had a bowel movement. (I won't include a picture for this one.)  Keep in mind, that doesn't happen very often.

Well, I was wrong.  I ate breakfast and it all went downhill from there.  About 30 min. after eating some cheerios and taking my morning pills, I became very nauseous.  In addition to that, I had a killer headache.  Both continued getting worse throughout the day.  At around lunchtime I couldn't take the pain anymore (the pain that was bringing me to tears).  My nausea had let up a little bit so I ate a couple of crackers with a little peanut butter and took some pain pills and a migraine pill.  About an hour later they violently came back up again.  That really made my headache better!  (please note that I am fluent in sarcasm)

So, I have not drank or ate much of anything today.  Which is soooo not good for people with mito and/or dysautonomia.  My energy level is, of course, about null right now.  I have fallen asleep/taken a nap about 4 or 5 times today.

I talked to the nurse at my GI docs office.  That was productive, as always.  (there's that sarcasm again)  I don't have the energy to explain how stupid they are, so maybe I'll go into it later.

I will soon be pushing for IV fluids.  On a "normal" day right now, I'm not getting enough fluids.  My new, new normal that is... since my GI issues got worse.  If I drink too much water, or any other liquid, I get very nauseous.  Vomiting is actually NOT fun, so I don't drink very much, or eat very much so I don't get to that point.  Amazingly enough, I'm not losing any weight.  I wish I at least had that benefit of hardly eating.  Then again, I was eating okay a month or two ago and I'm probably still digesting that food.  Plus, I don't move much, especially on the days that I'm not eating or drinking much.

So, now you're up to date.  And now you know why I haven't been posting much recently or called you or returned your call or emailed you, etc.  I will probably be using the blog to keep everyone up to date for awhile.  So, keep checking back if you want to know what's going on.

I hope everyone else is doing well.  Sending much love your way!

Wednesday, October 5, 2011

Thank you... and other news

I have been either keeping busy, or not feeling well.  Which means, I have not had the time to post and when I've had the time, I haven't had the energy.   However, I did just send out an email to friends and family to update everyone on what's been going on since the walk.  So, instead of typing the large majority of it over again... I'm going to cheat by copying and pasting.  :o)

Hi all.  

First of all, I want to thank all of you for spending your precious time walking with me and Team CTS at the Energy for Life Walkathon for UMDF.  I greatly appreciate all of your donations and the time you may have taken to ask for donations from others.  I know it is never easy to ask for money, especially in these tough times.  So I am very grateful to all of you who did so.  It was a huge success!  I have actually been stalling to send out thank you's to everyone because I wanted to be able to let everyone know what our donation total was.  However, the UMDF national office is working very diligently to count all of the donations from 7 walks across the nation that were held in September.  On the day of the walk, the total, for all teams' donations, was approximately $20K. As soon as I know the totals for our team, I will let everyone know.

As many of you may already know, September 18th through the 24th was Mitochondrial Disease Awareness Week.  Thank you to those of you who changed your Facebook picture, or anything else you may have done to help spread awareness.  Every little bit helps.  I used my blog to raise awareness by posting multiple times that week about how Mito affects me.  If you haven't already, please take a few minutes to check it out and help raise your awareness of mitochondrial disease. And since you're already here, it'll be much easier.  I have attached the fall newsletter for UMDF.  In this case, I posted the link below. There is an article about me on page 20.  There are also multiple other stories about wonderful people that I have met recently who have mito or have a child (or multiple children) with mito.  Deidra Atchley is the woman who does most of the work to put on the walk (and a 5K prior to the EFL walk).  Her family's story is on page 19.  Carolyn Slyzis-Scholey suffers from mito along with all of her children.  She makes beautiful jewelry in order to raise money for lawyer's fees.  You can read more about her on page 33.  You can also see and purchase her beautiful jewelry, and help her raise money for lawyers fees at the same time, by going to https://www.facebook.com/carolynscholey

Carolyn is the reason why I have decided to start making jewelry myself.  I started making hair bows for Danica only a few months ago.  I wanted to make a couple of bracelets to give as gifts to the top two fundraisers on Team CTS.  Congrats to Janel and JoEllen, by the way!  I enjoyed making those bracelets so much that I have decided to start selling my bows and jewelry.  I will keep everyone posted on the details... what I'm selling, where I'm selling it, etc.

I wanted to let you know that Danica is selling cookie dough for a school fundraiser.  Now, I have begged for enough money over the last couple of months.  I'm done.  Therefore, this is not me asking.  This is me letting you know, so if you want to buy some because you like the cookie dough, you can.  Here's the details... You can buy pre-portioned cookies, 2.7 lbs separated into 48 cookies, for $15 OR a tub of cookie dough that is also 2.7 lbs.
These are the choices... Oatmeal raisin, white chocolate macadamia nut, m&ms, chocolate chunk, sugar, peanut butter, snickerdoodle, walnut chocolate chunk, reese's peanut butter cup, or triple chocolate.  The "easy scoop tub" is $13 and the pre-portioned cookies are $15.  Like I said.. if you don't want them, don't buy them.  

If you haven't heard much of me recently, there's a reason for that.  I haven't been feeling very well.  My GI problems have been getting a LOT worse recently.  Which, unfortunately, makes everything else worse as well.  The problem is that my digestion is very slow... almost snail like.  Therefore, many times I am unable to eat much of anything without getting nauseous.  If I eat too much, it'll come right back up again.  However, if I don't eat often enough, I get nauseous.  At times, even drinking water makes me nauseous.  Therefore, I have not been able to eat or drink much recently.  As you can imagine, that causes all of my other symptoms to flare up.  Dehydration and fasting are the worst things for people with mito.  So, since I haven't been feeling well, I haven't felt much like talking.

I am seeing a Gastroenterologist.  They have done a couple of tests and am planning a couple more.  I am waiting on a medication that should hopefully help with my dysmotility (lack of motility in my GI tract).  It is not approved by the FDA in the US so I have to order it online.  I am hoping that the medication will help for awhile.  Unfortunately, this is a sign of something I was hoping was not going to happen.. disease progression.  I have a new friend, Naomi, who "walked" with our team.  She was in a wheelchair as well.  You may have met her. She has a lot of the same problems I do.  Unfortunately, she may be getting a G-Tube soon because the medications are no longer working for her.  She is not able to eat or drink much of anything, like myself, but she has tried multiple different medications over the years which work for a little while, and then stop.  Let's hope that I do not ever get to that point.  I do hope, however, that the g-tube helps her get the nutrition she needs.

I have hired a care-taker to help two days a week.  She comes Mondays and Tuesdays (she works the other days of the week) to help with errands, laundry, cleaning, taking care of the girls, etc.  It has been a huge help to have someone around on a regular basis to do the things I can't, especially now that I am having to take care of the girls 2 hours everyday.  With the extra cost of a care-taker and all of my medications that insurance doesn't pay for that are starting to really add up, Chris has been working a few extra hours a week again.  If anyone feels like they ever want to help out, we could still use it, even though we've hired someone.  There are days that I am able to take care of everything I need to, including the kids, but there are plenty of days, especially with my increasing health problems recently, that I can barely take care of myself.  The girls do have half days and/or days off of school that I could always use help with.  I used to use the care calendar, but I decided a few months ago to delete it because it really wasn't getting used.  So, if you really want to help out, just let me know what you would like to help with, and when and I'll be thrilled.  :o)

I have also started volunteering at Danica's school a couple of days a week for one hour each time.  I will be a "book buddy" for one 3rd grader and a 4th grader.  Basically, I just help them with their reading skills for 30 minutes because they have been selected by their teacher because they are a little behind in their reading.  I am also helping with little things in Danica's classroom for an hour every Thursday.  I chose to be a "book buddy" for the older kids because I don't think I could handle Kindergartners twice a week.  :o) I signed up to do it a couple of weeks ago.  We'll see how it goes with the way I've been feeling.  

So, now that you are officially updated on the lives of the cripple and her family, and my arms are hurting like crazy from all this typing, I think I'll finish up.  I hope you all are doing well, and I will let everyone know about the walk totals as soon as I know.

Much Love,
Robin


Okay... I can't get the newsletter on here right now.  I'm sure it can be done, but I'm wearing down very quickly so my brain is no longer working.  I'll put a copy of the articles up later.

I hope everyone is doing well.



Thursday, September 22, 2011

What Mitochondrial Disease Means to Me, Part 4

So, since I have already posted today, and I'm really not even feeling like typing, or doing anything for that matter, I'm just going to do a short post this time.

A large part of mitochondrial disease, or any chronic disease for that matter, is the costs involved.  A fellow mitovian (someone suffering from mitochondrial disease) wrote a post in her blog about this topic.  She did a great job, so I wanted to share it.  It fits real well with my theme of this week for my blog, mito awareness.  So please take a minute to read her post.

http://mitofamilies.blogspot.com/2011/09/financial-reality-of-mito.html

So, instead of typing a few paragraphs about one symptom, or a set of symptoms that fit together, I'm going to write a list of every little symptom I have due to mitochondrial disease and dysautonomia/POTS.  I experience many, if not all, of these symptoms every day.

Extreme fatigue
Muscle weakness
Muscle pain (24 hours a day, 7 days a week; made worse with activity)
Tinnitus (ringing in the ears)
Muscle spasms
Hot flashes
Extreme sweating during the day; night sweats at night
Heat intolerance
Cold intolerance
Increased heart rate with standing/activity
Shortness of breath (especially with activity)
Inability to stand for more than a few minutes at a time (standing longer would cause many of the symptoms listed here, including nausea, tremulousness, elevated heart rate, shortness of breath, and more)
Exercise Intolerance
Nausea
Constipation
Abdominal pain
Difficulty passing stools
Headaches
Migraines
Short term memory loss
Difficulty finding words or inability to think of the words I'm trying to say
Dysmotility - causing the nausea and constipation listed above
Acid reflux
Tremulousness (shaky, especially in the hands)
Irregular heartbeat/rhythm (symptomatic PVCs)
Blurred vision
Bruising easily
Slow recovery from illnesses
Mood changes (depression, irritability, etc.)
Poor balance

Unfortunately, I'm sure there's more but I'm struggling to keep my eyes open so my brain is probably already asleep.  However, I've listed 30 of my symptoms for you.  I hope that will help you better understand mito, why it is such a serious disease, and how I feel on a daily basis.

If you want to learn more, go to www.umdf.org

Now for a few videos.  The UMDF had a contest for the best video for spreading awareness for Mito awareness week this year.  Here are the top three videos, starting with the 3rd place winner, then the 2nd place winner, and then the overall winner.  As always, I'm begging you to increase your awareness and watch these videos.




2011 Awareness Week Video 5 from UMDF on Vimeo.



2011 Awareness Week Video 3 from UMDF on Vimeo.
I met Kenadee's parents at the UMDF symposium.  What a nice couple!  As always, they do not deserve this, and neither does Kenadee.  They are in my thoughts often.  Kenadee is SO precious!  I wish her and her family the best.



2011 Awareness Week Video 7 from UMDF on Vimeo.

I just met this little boy's mom on Facebook this week.  Another great person.  Her 2 1/2 year old daughter is in the process of getting diagnosed with mito now.   We also connected because she understands my disappointment in people and is there as well.  That is one of the many reasons why I write my blog.  Kristi knows that she is not alone in her feelings and now I know I'm not the only one who is dealing with that as well.  Thank you, Kristi, for reading and reminding me that I'm not alone in this world.  Congrats, Kristi, on winning the video contest.

Congrats to the winners of the UMDF video contest!  They were all great videos.

As always, thanks for reading, everybody.  My eyelids are now winning the battle.  Good night.

What Mitochondrial Disease Means to Me, Part 3

HOWDY HO!
POOP!!!

Yep, today's post, boys and girls is about, yep you guessed it... poop!

Okay, well, not really.  Actually, today's post for Mitochondrial Disease Awareness week is more about the lack of poop, than poop itself.

Most people with Mitochondrial Disease have problems with their GI System; namely GI Dysmotility.  What the hell is that, you say?  Well, as I'm sure you guessed, I'm going to explain it.

GI dysmotility is where the GI system, from the stomach down to the large intestine/colon, does not move, or does not move at the normal rate.  This, as I'm sure you can imagine, causes many problems.  Let's start from the top and make our way down.  When the stomach doesn't move food through it, it causes multiple problems just from that standpoint alone.  Many mito patients have the same GI problems I do, but I will just discuss them in terms of how they affect me.  Any time I eat anything, I get full very quickly.  I am not able to eat much at a time now a days.  If I do eat too much, which is about half of what I used to be able to eat, I will get very nauseous.  Even if I don't eat so much that I get nauseous, I will still feel very bloated, uncomfortable, and fatigued for at least an hour after I eat a meal.  The act of eating a meal, and then digesting it, is a lot of work for my body.  It is a very fine line that I have to walk to eat enough food both with each meal and on a daily basis so that I have the nutrients I need, especially for energy, but yet not too much food so that I am nauseous and also exhausted from having to digest my food.  It's funny.  Food is supposed to give me energy, so if I don't eat enough, I don't have enough energy, but if I eat too much, I don't have energy.  Ha!

Let's move on to the small intestines and colon.  Neither of these move fast enough, if at all.  This, as you can imagine, causes extreme constipation.  A lot of you probably think of constipation as hard, difficult to pass stools.  However, it also involves going for multiple days without having a bowel movement.  I generally go about once a week, sometimes less than that.  As you can also imagine, this causes a lot of pain and bloating. I have abdominal pain a lot.  If the stool is not passing because the colon doesn't move, it will sit in the colon and/or small intestine and the longer it sits there, the harder it gets.  The harder it gets, the more difficult it is to pass.  In addition to that, if stool is not coming out, there's no room for additional food to come in.  Which then makes the problem in the last paragraph worse.  So, it becomes a vicious circle that gets worse and worse.

I do take medications for these problems.  Unfortunately, the medications I'm on right now don't do a whole lot.  The Prilosec I take for my heartburn doesn't work all that well because the heartburn is caused from my food not digesting, not because of too much stomach acid.  I also take Miralax.  It's a non-habit forming laxative that is okay to take on a daily basis for long periods of time.  However, all that does is soften the stool.  Miralax does not make the intestines move.  So, I still can't pass the stool that is now soft.  It does, however, help stop the vicious circle that I explained previously.

The last problem with my GI system is muscle tone.  The intestines are controlled by the autonomic nervous system.  My autonomic nervous system doesn't work due to my dysautonomia.  That is what causes my intestines to stop moving like they are supposed to (that movement, by the way, is called peristalsis).  That movement is not the only thing that is working when you have a bowel movement, poop, take a crap, drop the kids off at the pool, go number 2, take a shit, take a dump,  pinch a loaf, defect, sit on the throne, drop a deuce, or whatever you call it.  When you go number 2, you also use multiple muscles in your pelvis to help pass the stool.  Think of when you're bearing down, grunting, squeezing, pushing, use the valsalva maneuver or whatever you want to call it.  When you are doing that, you are contracting muscles in the abdomen.  Well, when you have a disease that causes muscle weakness, ALL muscles are weak, including the ones you might not normally think of.

I also posted awhile ago about my other pelvic issue: pelvic prolapse.  That is when the muscles in the pelvic are no longer able to hold up the bladder, uterus, and rectum.  I won't go into much more detail than that, because I don't want you all picturing my lady parts.  The GI doc(s) will also be testing me for pelvic floor dysfunction, which is highly likely.  Here is a tidbit about pelvic floor dysfunction from the American Society of Colon and Rectal Surgeons...
"The process of defecation (having a bowel movement) requires the coordinated effort of different muscles.  The pelvic floor is made up of several muscles that support the rectum like a hammock.  When an individual wants to have a bowel movement, the pelvic floor muscles are supposed to relax allowing the rectum to empty.  While the pelvic floor muscles are relaxing, muscles of the abdomen contract to help push the stool out of the rectum.  Individuals with pelvic floor dysfunction have a tendency to contract instead of relax the pelvic floor muscles.  When this happens during an attempted bowel movement, these individuals are effectively pushing against an unyielding muscular wall."
Lucky for me, my muscles are weak, so it's not quit an "unyielding" muscular wall.

So, this completes our talk on poop.  Thank you for joining me for this informative discussion about dropping the kids off at the pool.  If you have been offended in anyway... I don't really care.

Here is the mito video of the day...



This is Pam.  She lives in the Kansas City area, not too far from myself.  Fascinating story.  Fascinating woman.  We have yet to meet, but we have talked on the phone.

Since I'm a couple of days behind, I am hoping to post another mito awareness post later today.  We'll see how the day goes though.

I didn't post the last couple of days because on September 20th, I was celebrating another year of my life gone by.  It is more of a celebration to me now because I am thankful that I am able to celebrate another year of my life that I have lived.  I may not be living my life the way I had originally planned, or the way I would like to live it, but I am still living.  Sometimes I do forget that, I know.  It's not easy to celebrate a life that you did not wish for, but it's getting easier and easier as time goes on to appreciate my life the way it is.  It could be worse, my kids could be celebrating my birthday without me.

Today I will be celebrating another year of my wonderful husband's life gone by.  He's healthy as a horse.  Thank, god.  He is the most wonderful man I know.  I couldn't have found a better husband.  He's not perfect, but I know he tries... even if I do get on him every now and then about things I wish he would do different.  I do know that he is still better than any other man I could ever find.  So, on that note... Happy Birthday to the best husband and father in the world.  I love you, and I will still love you when we're celebrating your 78th birthday.  

Monday, September 19, 2011

What Mitochondrial Disease Means to Me, Part 2

I am going to try my hardest to type tonight.  The last couple of days have been filled with my number one symptom, the symptom that I will talk about in today's installment of "What Mitochondrial Disease Means to Me":   FATIGUE.

Fatigue is the number one symptom of mito.  Let's go back a bit and discuss what mitochondrial disease is.  Think back, waaaaay back to biology class.  It wasn't too long ago for me since I'm so young and all, but it may be a little bit more difficult for you oldies out there.  Mitochondria are in almost every cell in the human body (red blood cells and one other that I can't remember right now do not contain mitochondria).  Mitochondria produce the energy that cells need to do their "job".  They convert the oxygen we breathe and the food we eat into energy, otherwise known as ATP.  Therefore, if some of the mitochondrion are not working, the cells will not have the energy they need to do what they need to do (i.e. lung cells help us breath and transport oxygen to our blood, muscle cells help us move our bodies, breathe, etc.)

So, I have Mitochondrial Disease with deficits in Complex I and III.  What the hell does that mean, you say?  Well, the mitochondria use a 5 step process, or 5 complexes, to convert oxygen and nutrients into energy (ATP).  If even one of those complexes does not work, the whole process gets screwed up.  It's like a power plant.  I can't be too specific because I don't know exactly how a power plant works, but I do know there has to be steps to the process of creating power.  If one or more of the machines in a power plant break down, the power plant is not going to be able to produce power, or at least not very well or not as much of it.  That is the same thing that happens in Mitochondrial Disease.

Another analogy I've heard is to imagine running your whole household all day with a AA battery.  You wouldn't get very far.  There wouldn't be enough light for your kids to do their homework.  The stove or microwave wouldn't heat up enough to fix dinner.  You wouldn't be able to watch the news on TV to increase your knowledge of what's going on in the world.

Since I'm discussing fatigue in this post, lets use the battery analogy again.  Try using a watch battery to power a Power Wheels car.  It wouldn't get very far.  Well, I'm the Power Wheels and I'm using a watch battery.

This watch battery is, however, rechargeable.  But, as you can imagine, even fully charged, it still doesn't get the Power Wheels very far.  That's me.  I can do a limited amount of activity.  However, it doesn't take long at all before I have to recharge.

When I get up in the morning, my body takes awhile to get going (my battery/engine needs to warm up).  I can usually get myself some coffee, then rest.  After 20 minutes of rest, I will go fix myself an easy breakfast, get my pills, eat it, then I'm ready to rest again.  Once again, after 20-30 minutes, I'm ready to brush my teeth, get dressed, put my contacts in, and sometimes even make the bed before I have to rest again.  I am able to get out and about.  However, just driving makes me tired and weak.  Most people don't realize how many times you have to move your right foot from one pedal to the other in the course of a 20 minute drive.

This, in addition to my weakness (which will be the subject of another post) and pain, is the reason why I use an electric wheelchair.  I am able to walk, but walking takes a LOT of energy.  I'd rather save my energy that I would use walking to use doing other activities.  Sometimes I use my chair not to save energy, but because I've already used too much.

I thought my wheelchair would upset me, make me feel embarrassed, and I wouldn't want to use it unless I absolutely have to.  However, I am so thankful for it.  It is so nice to be able to conserve my energy for things I enjoy doing by using my wheelchair.  Even getting around the house in it helps me save so much energy for me to use to do other things like cleaning up, or spending time helping my daughters with their homework.  I am so happy to have such a huge fatigue-reducing device that I am not embarrassed by it at all.  Instead, I am thankful that I can "stand" and talk to people for more than 2 minutes because I am actually sitting.

The best way to describe the way someone with Mitochondrial Disease feels in regard to energy is by sharing "The Spoon Theory" with you.  If you haven't read it before, please do so now.  It will also help you understand why I will sometimes say that I am "out of spoons for the day", or "making the bed this morning took up too many of my spoons."

So please take some time to read the spoon theory by clicking HERE.

In addition to my posts about how mito affects me, I will be posting videos everyday about Mitochondrial Disease or people dealing with it.


Sunday, September 18, 2011

What Mitochondrial Disease Means to Me, Part I


Pain.  Did you know that a lot of people with Mitochondrial Disease are in pain all the time?  The neurological system and muscles require more energy than any other body systems.  Therefore, the lack of energy in the muscles cause a lot of pain.  Imagine what you feel like 1-2 days after the hardest weight lifting workout you've ever done.  That's mito muscle pain.

I posted that exact statement on Facebook tonight.  I am doing the same thing on FB that I'm doing here for Mitochondrial Disease awareness week.  I am so honored to see that multiple other people who are dealing with mito reposted, word for word, what I said about pain and mito.  To me, that just reiterates how true it is and how many people are going through exactly what I am.  It is so sad to me, though, that many of those who reposted it are mothers of children with mito who have to see their child in pain all the time.  I am thankful that I am the one in pain everyday, 24 hours a day, and not my children.

As an emergency room nurse, I never truly understood those in chronic pain.  Instead of looking at the patient, I would look at the amount of pain meds on their medication list and immediately form an opinion of them.  Considering that our patients had to tell us what medications they take on a daily basis almost right after they tell us their name, that opinion I formed based on their medication list ended up being my first impression of them.  I didn't take the time to think about why they take all of those pain medications.  I would immediately have a poor opinion of them because they "want to take narcotics".

Well, I have news for the old me, and any other ER nurse out there who looks down on or forms a poor opinion of people on pain medications, especially narcotics...  We don't want to take narcotics to relieve our pain, we have to.

I have tried everything.  I have tried heat, ice, non-narcotic pain relievers, icy-hot, massage, relaxation techniques, screaming expletives, over the counter pain relievers, hitting myself in a part of my body that I don't have pain so I won't think about the pain I do have, and, of course, eating excessive amounts of ice cream and pizza (and a bunch of things that I can't remember).  They all work, but not enough.  When my pain is a 6 on a 1-10 scale, almost all the time, those things just don't do it.

I think if pain was my only problem, I may be able to make all of those things combined work.  However, as you'll see over the course of the next week, pain is far from my only problem.   Fatigue is my biggest problem secondary to pain.  And, as anyone with pain will tell you, pain is always 10 times worse when you are fatigued.  In addition to that, pain can be tolerated well when experienced in short periods of time.  But, my pain never goes away.  I am thrilled if I can get my pain below a 2 or 3.

Pain can be anywhere.  My pain is just about everywhere.  Well, really, it's just in one place... my muscles.  However, muscles are everywhere.  As I can say that I have pain in 75% of the muscles in my body, my pain is bad in just a few places.  Of course, I say "just a few" like it's not that many, then I start to list them off and it definitely sounds like more than "just a few".  My worst pain is in the back of my neck and head which causes a headache all over if I don't keep it under control, my pelvic muscles, upper legs, and butt... oh, excuse me, gluteus maximus.  Every now and then I have pain in my back, chest, abdomen, and upper arms.  That pain is not as constant as the pain in the areas I mentioned first.  You may notice that I walk a bit different than I used to.  That is because of both the pain and weakness equally.

My pain gets worse with any activity, as does almost all of my symptoms.  Because of that, and the fatigue, my pain gets worse as the day goes on.  Evenings and night are not so great for me, unless I am well medicated.  And even then, I am sometimes still in a lot of pain.

I am very lucky, thanks to the recommendation of my mom, to have an excellent pain doctor.  He is my second.  He is caring, funny, and very intelligent.  He even knows a bit about mitochondrial disease.  I don't have to argue to get him to change things because they're not working.  I am not nervous prior to my appointments and I leave there happy.  That doesn't happen very often with doctor's appointments.

My pain meds have been working fairly well as of late.  There are times that they don't work, though.  That's just going to happen.

So, if you are the type of person who tends to judge people for being on narcotic pain medications, please try to change that.  I, as well as many people with chronic pain, am not trying to get high.  I am only trying to decrease the amount of pain I'm in so I can go on with my life as best as possible.  And this is coming from someone who's been on both sides.

With each of these posts this week, I will be posting a video about mitochondrial disease.  Enjoy!

Tuesday, September 13, 2011

Mitochondrial Disease Awareness Week

September 18th through September 24th is Mitochondrial Disease Awareness Week.  September 17th is the Energy for Life Walkathon in Kansas City.

I have been doing my part to raise awareness as well as money for the United Mitochondrial Disease Foundation.  They use the money raised for research to help find a better treatment, a cure, and to help train doctors about mitochondrial disease since there are so few mito specialists.

I have been working diligently to raise money for our team for the walkathon.  A saying that I always go by is, "You can't bitch about something  if you're not going to do something about it."  I feel that if you have a problem, do something to solve it.  If you don't, you have no room to complain about it.  There's not much I can do about the things I have been going through over the last couple of years.  I have, however, done everything I can do.  I pushed and pushed for a diagnosis when I knew I didn't have one, or the right one.  Now that I have a diagnosis, there isn't much I can do about the way I feel on a daily basis.  There's definitely nothing I can do to cure my disease.  However, there is something I can do to help the people who can find a treatment and/or cure, or other things that help people with mito.

Other than raising money, I am also trying to raise awareness.  No one, including doctors and other medical personnel, knows what mitochondrial disease is.  If a doctor has heard of it, they don't know much about it other than the name.  Everyone knows what a pink ribbon stands for, but how many people know what a green ribbon stands for?  How many people know what mitochondrial disease does to a person?

Because of this, I will have numerous posts over the course of the next week and a half titled "What mitochondrial disease means to me."  It will be just that.  I will be letting all of you in the blogging world know what mitochondrial disease is and how it affects me on a day to day basis.  I'm even pretty sure that a good portion of my family and friends don't even know all of the ways mito affects me.

So tune in over the next couple of weeks and learn a few things about mitochondrial disease.  Please.. if you do anything for me this year, learn what mito is to me.


And one more thing....  This is another reminder about the Energy for Life Walkathon this Saturday, September 17th.  I set my team goal to $5000.  Our team is currently at $2855.  Please help me reach our goal.  Go to Robin Jones' personal donation page and click "Donate" or go to Team CTS page and pick another team member to donate to.  Thanks for your help!

In response to a comment, and more.

I want to respond to a comment left by an anonymous person on my last post.  However, I felt it important enough to put it in a post and not a follow up comment.

I have copied and pasted the comment here so you won't have to go back to look at it....

Anonymous said...

Is there a support group that you can join? Also, is there any volunteer organization that you could get involved with that could help you refocus some of the energy that you do have?

I think in terms of your disapointment with people you sound like you could benefit from a support group/therapist and that is probably some of what you are trying to do with your blog but perhaps it is time to accept that the people who are disappointing you are not going to change but you can change and stop choosing to be disappointed by them.

Doesn't sound like you are in a great spot and I don't envy your position.

As my last few posts have pointed out, I am having problems dealing with people recently.  I have felt let down over and over again in the last couple of years since I started getting sick.

I want to explain a few things about me. I am a people person. In addition to that,  I am a very independent person. You wouldn't think so based on the person I am now and the things I write on here, but deep down inside, I am.  Both of those qualities have made all of this so difficult on me.

I do agree with you, anonymous, that I need to quit trying to change everyone else and instead change myself.  I do need to learn to stop being disappointed by people who continue to disappoint me over and over again.  Unfortunately, that's easier said that done.  Yes, I could go see a therapist. (Actually, I have been kind of looking for a good one recently.)  There aren't any mito support groups in town since it's such a rare disease.  I am, however, starting a class in a couple of weeks titled "Living Well with a Disability".

However, I am reminded almost everyday how much people let me down.  Here's why.  As an independent person, I never had to ask for help before.  Even if I needed it, I found a way to take care of it on my own.  Now, whether I want to or not, I cannot take care of much of anything on my own, including myself.  I can't take care of my kids, myself, my patients (which I don't have anymore, but you get my point), my house, or my husband.  I am so independent, I can't stand asking for help.  BUT... I desperately need it.  I need it everyday.  Therefore, everyday, when I need help, and don't get it, I am reminded of the people who have let me down over the last couple of years.

As I said, I am a people person.  I am reminded everyday of all of the friends I have lost and the friends and family who are too busy to visit as I sit in my house everyday, alone and lonely.  I can't get out and do things because I only have enough energy to take care of my kids for 2 hours after school, and help with stuff in the evenings (bath, etc.).

I am trying.  I do try to stay positive.  Obviously it's not working.  However, I am successful in keeping myself from getting really down/depressed about the situation I'm in.  There are many days that all I want to do is lay in bed and feel sorry for myself all day.  There are many times that I just want to cry and cry.  However, I have not been doing either.  I get up everyday and take care of myself and my kids when they get home from school, no matter how awful I feel, physically or mentally.  No matter how nauseous, in pain, weak, or tired I am, I still get up and around and take care of myself and my kids everyday.  So, with the amount of mental energy it takes for me to just get through my day while feeling horrible, physically and sometimes mentally, I don't have a lot left over to be overly positive about things I just don't feel very positive about.

Thank you, anonymous, for reading my blog and leaving your comment.  I appreciate every point of view and side of the story.

Tuesday, September 6, 2011

Where Did Everyone Go? Part II

This evening I had a nervous breakdown of sorts.  "Oh, whatever, she's exaggerating," you say.  Well, not by much I'm not.  Let me explain...

I am titling this Where Did Everyone Go? Part II because I titled a post "Where did everyone go?" almost a year ago.  In that post I discussed how everyone was so helpful, but it was slowly going away.  Well, that was nothing.

Over the last few months the amount of help we have received has decreased drastically.  Don't get me wrong, I didn't expect it to last forever.  Or did I?

With two kids, one of which being pretty young still, it is difficult for my husband to do everything that needs to be done on a daily basis.  I know what you're probably thinking.... (I'm practicing my mind reading here) "It's just like being a single dad.  Lots of people do it."  However, he not only has to take care of our two kids, but he has to take care of me as well.

I saw the help slowly wearing off a couple of months ago.  So, I decided to try to hire someone.  I have done a little bit of searching.  However, I was encouraged by multiple people that that wasn't necessary.  Those people said they could do it so I don't have to.  My dear husband doesn't want to spend the money (after all, it's a lot of money... and we just stopped paying for daycare for my youngest one since she just started Kindergarten).  So I've put off a strenuous search for a caretaker.  I am now finding that I need one.

School started a couple of weeks ago.  My oldest started 7th grade; first year of middle school, with 2 advanced classes.  My youngest started Kindergarten.  She comes home on the bus at 3:30pm instead of coming home with Chris at 5:30pm.  The older helps take care of the younger.  Or that was the plan.  She has had so much homework and studying to do that she not only needs my help with, but prevents her from helping me with her sister.  So, at 3:30, both of my daughters are home, and Chris doesn't get home until at least 5:30.  I know 2 hours doesn't sound like much, but it's the toughest 2 hours of the day for both myself and my 5 year old.  I generally hit a wall by 5 o'clock at the latest.  And when I hit a wall, I hit a wall.  I have zero energy, my brain just about completely stops working (no helping with 7th grade homework, I can barely help with Kindergarten homework), I generally get a headache, and my muscles decide that they are done for the day.  And yes, I eat a good sized, healthy snack in the afternoon.  So, every afternoon when the kids are home has proven to be very tough on me.  As soon as Chris gets home, I generally go straight to bed and he has to bring my dinner to me there.

I finally saw a GI doc last week. (no, I'm not completely changing the subject.  I promise.  I'm not that ADD.) She ordered 3 tests, none of which are extremely easy to do.  Two of the tests are this week (Wed. and Fri.) at a hospital 25 minutes away.  The first test will probably last about 3-4 hours, plus another hour of driving there and back.  Then, as soon as I get home, I will have to take care of the kids, despite the fact that I will probably hit my 5 o'clock wall by 3 o'clock.  Then, on Thursday, I have a meeting at the elementary school at 2:30.  I will then have to come home to get my youngest taken care of to then get out again to pick up my oldest from choir practice.  On Friday, I have another test at the same hospital, 25 minutes away.  Next week I have a colonoscopy.  I am worried that because of the prep and test, I will need help just getting around and taking care of myself the day before, of, and after the colonoscopy.

I know that doesn't sound like much to you healthy people out there.  To me, it sounds completely awful.  My main fear is that doing all of this myself will set me back.  If Mito patients do too much, and overdo it, we can possibly not recover from the setback it causes.

Unfortunately, what other choice do I have?  I have 1, maybe 2 people I feel comfortable asking for help right now.  There are a couple of people I feel comfortable asking for help if it's something very small.  But when it comes to taking care of me the day before, of, and after my colonoscopy, who's going to do that?  My wonderful mom #2 (step-mom) is going to care for me the day of.

It's not just the tests and doctor's appointments that I'm on my own for.  It's the everyday stuff.... taking care of the kids 5 days a week by myself, getting stuff done around the house, etc.  My husband's doing the best he can.  He gets a lot of stuff done at night, but he can't help me with anything during the day.  He has already had difficulty getting his 40 hours in over the last couple of months because he's had to help me so much.

I just don't know what to do.  Do I try harder to find someone to hire to help me and then have to struggle with finances again because we can't afford it. (at least not the amount that I really need help)  Do I just suck it up and do it myself feel like shit, physically and mentally, all the time?  I don't know what to do.

In addition to that, it's really starting to get me down again.  Once again, I'm lonely and with feeling like I don't have any help or anyone to ask for help, I feel alone in addition to lonely.

So, after a busy day today of running errands, taking care of the kids when they got home, and dealing with major problems with the pharmacy (one of the errands I ran, and my husband ran... twice), the thought of doing everything I have to do this week put me into a partial nervous breakdown; crying, hyperventilating, etc.  It wasn't pretty.

And now... I'm too tired to keep typing, or to keep my eyes open for that matter.  No pretty pictures this time... sorry.