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

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,

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.