My Story

Over the last 3 years I have written about my journey through my illness on this blog.  However, I have never written the entire story about my my health problems, diagnosis, testing, etc. all in one place.  If someone wanted to know they'd have to take bits and pieces from multiple different blog posts and put them all together.  Since I have had many people ask me and/or I've had plenty of situations come up in which it would be nice to have, I thought it would be a good idea to write the cliff's notes of my journey (or at least the medical aspect of it) all in one place.

So, without further ado, here's my story...

The "Before" Picture
Kansas City Half Marathon - 2008

The Start of it All -

In July/Aug. of '09 I started to develop headaches. They quickly became daily headaches that continued to get worse.  That was the first thing that prompted me to see a doctor... or numerous doctors.  In Dec. '09, I actually stopped working to find the cause of my headaches.  At that time I thought it was temporary until I found the cause of my headaches and got them taken care of.  However, within a couple weeks I started developing symptoms of POTS (Postural Orthostatic Tachycardia Syndrome): tachycardia (extremely elevated heart rate), fainting, shortness of breath, dizziness, exercise/activity intolerance, etc.  I ran a half marathon in October and couldn't walk up a flight of stairs without getting short of breath by December.

Getting a Diagnosis -

I saw numerous doctors here in town who could not figure out what was going on.  I had test after test after test.  I even had a 24 hour stay in the hospital because my cardiologist wanted to get things done faster since I was getting worse, not better.  My cardiologist diagnosed me with POTS but he truly believed something else was going on.  He helped me get into the Mayo clinic in March of 2010.  The autonomic specialist at Mayo diagnosed me with POTS.  The main symptom I had at that time that couldn't be explained by POTS was my muscle pain.  She just blew that off.

They sent me home with a regimen of slowly increasing exercise that would "cure" my POTS.  However, exercise did nothing but make me feel worse.  I would be practically unable to move for 2 days after 5 minutes of exercise.  I called the doc at Mayo a couple of months after I was there and again 2 months after that.  I was trying to explain to her that the exercise only made me worse, not better and my muscle pain was getting worse.  When I was there in March '10, she, and the cardiologist I saw at Mayo, both said that if the treatment plan they gave me did not work to call them and they would get me back in to see them again.  However, when I called the autonomic specialist just said that the pain was probably just fibromyalgia and if I came back she would just send me to an internist who specializes in fibromyalgia.  I even brought up mitochondrial disease to her and she said that since my emg was normal there was no way I had mito. (An EMG means nothing when testing for Mitochondrial Disease.)  Well, needless to say, I have not spoken to or seen anyone at Mayo again.

I had brought up mitochondrial disease to the doctor from Mayo because I had done a little bit of research on the topic.  I knew in my heart, and because of my intuition, that POTS was not the explanation for all of my symptoms.  I started researching diseases that have dysautonomia as a symptom instead of the primary disease.   Everywhere I looked, mito seemed to be the answer. I ended up talking to someone from a message board for dysautonomia who was diagnosed with mito after he was diagnosed with POTS.  His symptoms and experience were very similar to mine.

And "After"

The man I talked to was very helpful and gave me a lot of information.  He saved me a lot of time in research.  He gave me the name of a doctor in Atlanta who specializes in mito.  He also discussed with me the difference between frozen and fresh muscle biopsies.  Armed with all of this information, I saw a neurologist at the local university medical center.  I got his name from the MDA website (http://www.mdausa.org/locate/).  That site is supposed to give you the name of a doctor who is familiar with all of the diseases on the mda spectrum.  However, I learned that the doctor I saw based on the information on the mda website was not very familiar with mito at all, even though it's one of the diseases covered by mda and mda clinics. The purpose of my visit was to get an order for a muscle biopsy.  He actually suggested it before I did so I was glad.  He suggested a doctor in Texas but I wanted to see Dr. Shoffner based on the recommendation I talked about above.

It took a few months to get in with Dr. Shoffner.  I had seen the mda doc in Aug. 2010 and I got in with Dr. Shoffner in Dec. '10.  At that time I had a fresh muscle biopsy, an exercise test, and a bunch of lab work.  I returned in March '11 for the results.  That is when he informed me that I had mitochondrial disease.  The testing showed a defect in Complex I and Complex III.   You can see all 40+ types of mito here... Types of Mitochondrial Disease  So you don't have to fit into one of the acronyms to have mito.  That's the interesting thing about it.  Everyone with mito is different.... different symptoms, different test results, different age of onset, etc. etc.  

After my appointment with Dr. Shoffner in March '11, he planned on doing genetic testing to find out what gene defect was causing my mito.  That search is still kind of ongoing and here's why...  I finally received the results of that test last December about a week before my appt. with my local geneticist.  That was lucky because he was able to discuss the results with me so I didn't have to return to Atlanta to Dr. Shoffner's office to discuss them.  The genetic defect is in my mitochondrial dna and it usually causes LHON (it's in the list of mito diseases).  However, I don't have any of the primary symptoms of LHON.  I have since been to another mito specialist and she thinks that the defect that was found is not the primary cause of my mito.  It is possible, per the geneticist here in town (not a mito specialist), that I just have different symptoms than most patients with LHON.

Progression and Moving Forward -

Mitochondrial Disease is a progressive condition.  I was told by Dr. Shoffner, the mito specialist, that I would continue to progress until I, eventually, hit a plateau.  I will then stay at that plateau inevitably.  If that is true, I have yet to find my plateau.  I have continued to progress since my diagnosis.  It has not been a rapid progression, thankfully.  Of course, that can be based, somewhat, on opinion.  I have met the mother of a woman who was diagnosed at age 19 and passed away less than a year ago at 24.  She had slow progression, like myself, until the last year or so of her life.  All I can do is hope that that won't happen to me.

In August 2011, I got my electric wheelchair and was finally able to go shopping or do other things that required standing or walking further than a few feet.  By that time I had already been using a chair in the shower as I was unable to stand long enough to shower.

In September 2011, I started developing a new problem/symptom: GI dysmotility. My gastrointestinal system was starting to slow down... quickly.  Ha!  It was slowing down quickly.  I'm so funny.  Okay, moving on from my not so funny joke...  I started seeing a GI specialist and getting tests done.  I had multiple tests to check the rate of my digestion in my stomach and my intestines, an endoscopy, colonoscopy, and a couple of tests to check the muscle strength of my GI system.  One of the tests I had done was called a Sitz marker test. It showed that it can take up to 19 days or more for me to digest something.  You can read more about my GI tests and problems here and here.

In January 2012, I saw Dr. Fran Kendall, a mito specialist, for a second opinion on my diagnosis and because I wanted a different mito specialist to follow up with other than Dr. Shoffner (I won't get into the reasons why.  If you want to know, email me.)  She agreed with the diagnosis. Shocker!  She also recommended that I start receiving IV fluids a couple of times a week to help keep me hydrated.  Patients with dysautonomia and/or mito need to stay very well hydrated.  Because of my GI problems, I wasn't.  So, when I returned to Kansas City, I had a port a cath placed in my right chest.  I have been receiving IV fluids ever since.

My GI problems have continued to get worse.  In August 2012, I overdid it while planning the Energy for Life walk and hosting another fundraiser.  I wound up in a mito crash (want to know what a mito crash is? - read about it here) that put me in the hospital for 3-4 days.  One good thing came out of that hospital visit.  I am now taking one liter of IV fluids a day due to my GI problems.  I am having constant problems with nausea, vomiting, and chronic constipation. About every other week I go 3-5 days without eating much solid foods.  Right now I am just trying to hold off on getting a g/j tube (feeding tube). GJ tube info

I have been seeing a pain specialist for a couple of years now.  He has kept me on pain medication and medication to stop my muscle spasms and twitching.  But, because I'm going to be in pain for the rest of my life, and because the pain medication has a negative effect on my GI system which is already struggling to work, I am in the process of getting an intrathecal pain pump. Information about the pain pump

So, I use an electric wheelchair to get around.  I have a port a cath and receive IV fluids daily.  I take multiple medications every day.  Soon I will be getting a pain pump and eventually, when my GI problems progress enough, I will need a G/J tube.  I'm going to have a little difficulty going through the metal detectors when I travel.  Hopefully they won't think I'm hiding a bomb inside my abdomen (pain pump) or chest (port a cath).  If you want to know each and every one of my symptoms, I listed them in this blog post - here.

This is my life now.... take it or leave it. (Don't tempt me.. because there are definitely days in which I'd leave it.)

Conclusion - 

So, that's my story.  The condensed version.  I was healthy my entire life until I started developing constant headaches in July/Aug. 2009 at age 30.  The main symptom that did not fit with pots alone is pain; all over muscle pain that got worse with activity.  My pain was also getting worse as time went by.  That was the main thing, along with the fact that exercise made me more sick instead of helping like they said it would, that made ME (not any of my doctors) look at mitochondrial disease.  The biggest thing that helped me?  I followed my instinct!  I left Mayo with a diagnosis of POTS.  My mom and step-mom went with me and were both happy with the diagnosis, treatment plan, and prognosis.  I, however, left there feeling like it was a waste of time.  I KNEW something else was wrong and that was before I started researching mito.

So, mito can start at any age.  I have talked to a lot of adults who have adult onset mito who now have an explanation for all the things that happened to them earlier in life.  I'm not one of those people.  I, on the other hand, grew up without a single health problem (aside from broken bones from my active/daredevil lifestyle) until a ton of health problems hit me like a ton of bricks at 30 years old.

If you have any questions, feel free to ask.  I may have trouble returning emails in a timely manner, but I always return them... eventually.  I'm happy to help in any way I can.

Happiness with a Chronic Illness

"The purpose of our lives is to be happy." - Dalai Lama

What is the meaning of life?  That's always the million dollar question. Right?  I have always believed that the meaning of life is to be happy.  After all, what is life if you aren't happy?  All I have ever wanted is to be happy overall.  That doesn't mean that I wouldn't have any stress in my life what-so-ever.  No one can avoid all stress.  That doesn't mean I would be happy 100% of the time, either.  That's not realistic.  However, it is realistic to be happy overall or in general

I was there once.  I really was.  I was genuinely, truly happy.  I loved my job.  I was an emergency room nurse and I loved it.  I enjoyed going to work and if I had too many days off in a row, I was anxious to go back.  My coworkers were like my second family, or so I thought. I had friends.  I didn't have a ton of friends, but that's not what I've ever wanted.  I had a handful of friends who I loved and I believed, at the time, that they loved me back.   I had (and still have) a wonderful husband whom I loved more than I've ever loved anyone, aside from my kids.  And, speaking of my children... I had two beautiful daughters (and still do).  My husband had a decent paying job.  No, we weren't rich, but I don't need a lot of money to be happy.  We made enough to pay our bills and still have money left over to buy the things we needed and a few things we wanted every now and then.  In other words, we weren't worried about money for the first time in awhile (or ever).  I only worked my normal 3 shifts a week and didn't work a bunch of overtime.  Because of that, I was able to enjoy my days off with my daughters and have a little time to myself every now and then.  Lastly, I was in better shape than I had been my entire life and I was loving it.  Not only did I look good, but I felt good.  I was so happy to have found a "hobby" that I thoroughly enjoyed and was proud of myself for doing it... running, training for races, and lifting weights at the gym.  I also had the thrill of climbing two mountain peaks in Colorado.  I knew right away (despite my sore body) that I found a new hobby.  I was happy... very happy.

Here's the ironic thing... just a few short months later, it all went down the drain... and fast.  For the first time in my life I was truly, utterly happy... and then everything changed.  I got sick and lost everything.  Everything that made me happy, aside from my children and my husband, went away.  Talk about a high and a low.  Why did this have to happen to me?  Why, when I finally felt truly happy for the first time in my life, did it have to all go away so suddenly?

Now I was I dealing with the exact opposite of true happiness. Many people in this world know about the grieving process.  Many have gone through it when they've lost a loved one.  Now I have gone through the grieving process as well.  However, mine is over the loss of my own life, not someone else's.  All of the things that I listed above that were making me happy were gone with the exception of my kids and husband.  My job/career, my friends (at least the majority of them), my work "family", running, my body (in two respects -the fact that my body was in the best shape ever and that it worked, period), and money.

I had lost all of those things 3 years and 5 months ago.  I have been through all of the stages of the grieving process, including acceptance.  I am in the acceptance stage now.  I do accept that this is my life now.  I know that I cannot go back to the way things were.  I do not pine after my old life anymore.  Well, not completely.  I definitely miss all of those things, but I know that my life will never be the way it used to be.  I may accept that this is my life now, but that doesn't mean I'm happy with it.

So, the question is this... How can someone who is chronically, progressively ill be happy?  How can someone be happy when they're sick all the time?  For those of you without a chronic illness, go back to my comparison to having the flu (Explaining Myself Again), which is the closest you can come to imagining what  life is like with chronic illness, even though it's still pretty far from what my life is like.  Imagine how your life would be and how you would feel if you had the flu every other week.  And on the weeks that you don't have the flu you get tired easily, you still feel weak, slightly nauseous, and in pain.  In other words, you never feel completely fine.  How would your life be?  Would you be happy?

I know I'm not.

Many people go through rough patches in their lives.  The difference is that for most people, they are able to see a light at the end of the tunnel.  Most of the time, people can say "this too shall pass."  For me, and most people, it is much easier to get through something difficult in life (the loss of a job, divorce, the death of a loved one, etc.) when you know it's only temporary.  No, the death of a loved one is not temporary and neither is divorce.  However, in both of those situations people are able to go on with their lives after awhile.   And please don't get me wrong.  I am not saying that any of those situations are easy... far from it, in fact.  I am just saying that, in most situations, people are able to get through it and after a period of grieving and adjustment, they can continue on with their life.
 
According to the CDC, about 1 in 10 people over the age of 12 in the United States take antidepressants.  And, up to a third of people with chronic illness suffer from depression.  Here is an article about chronic illness and depression - Chronic Illness and Depression.  The article states that "depression is especially likely to occur when the illness is associated with pain, disability, or social isolation."  Sound familiar?  Mitochondrial Disease, at least in my case, causes all 3 of those things.  I am in constant pain.  I have to use a wheelchair to get around at least 60% of the time after living a very active life.  And, as I've discussed many times, I am definitely in social isolation.

"Happiness is not something ready made.  It comes from your own actions." - Dalai Lama

I have tried to be happy.  I have found things I like to do that doesn't require much physical activity, despite spending the first 30 years of my life enjoying only things that do require physical activity.  I have become involved in fundraiser after fundraiser.  Actually, I haven't become involved.  I've created them myself.  I have spent energy I don't have helping others (friends, family, and the needy), as much as people will let me, since I'm no longer able to do so as a nurse. I even tried volunteering at my daughter's school.  I couldn't keep it up because I had to cancel too many times because I was too sick to come in.  They need someone who's going to be reliable and actually show up when they say they're going to.  I've added friends, gotten rid of "friends", and changed current relationships to try to make them better.  I've seen 2 different therapists since I've been sick.  I've even read books on dealing with life with a chronic illness.  So, it's not like I haven't tried.

"The two enemies of human happiness are pain and boredom." - Arthur Schopenhauer

There are only so many things a person with a serious chronic illness can do to make themselves happy.  What can you do from your bedroom or couch?  And then there are only so many distractions from the things that make you unhappy.

Nothing I've done changes anything.  I'm still unhappy.  I don't know how to be happy while feeling bad/sick all the time.  I do okay on my "good" days, but I'm not talking about how I'm doing from day to day.  I'm talking about overall happiness.

"The greatest happiness of life is the conviction that we are loved; loved for ourselves, or rather, loved in spite of ourselves." - Victor Hugo

Unfortunately, a big part of my happiness relies on my relationships with others.  Why is that?  Well, I've always been a social person who enjoys being around others.  I like to talk. (Even those of you who don't know me personally should know that by now based on how much I ramble on in my blog posts.)  I spend day in and day out at home by myself with my only connection to the outside world being my computer.  (Remember that social isolation I mentioned above?)  That takes a toll on someone who likes to be around people.  I try to make plans with others but people don't always want to come here.  The ones who do only come on occasion.  Because of that I try to get out and meet people places but I just wind up cancelling on them 75% of the time because I'm too sick and/or weak to drive myself there, sit up and visit for an hour or more, and drive myself home.  And, as I've discussed in multiple posts, the amount of help and support continues to dwindle.  If it wasn't for my mom it would be pretty close to none at this point.  The stupid thing is that I don't even want help with anything anymore. Would I appreciate it?  Of course.  But at this point in time I'd be happy with people coming over to visit with me for an hour or two, but that's a rarity.  My own grandma doesn't even want to come over and spend time with me most of the time.

I don't know what I do to chase everyone away.  Maybe it's a vicious cycle.  Maybe people don't come over because I'm not happy.  However, the fact that I hardly ever see anyone makes me unhappy.  I thought I was a good enough actor to make people believe that I'm okay.  At least enough to where people still enjoy hanging out with me.  Maybe not.

Writing has been very therapeutic for me. Hence, the blog.  Getting it all out there for others to see almost makes me feel as though I'm taking my problems off of my shoulders and letting them float away into the world.  There's still a little bit inside of me that I have to deal with, but the majority of it is out there for everyone else to learn from and maybe even help me learn.  However, I almost didn't even write this post.  I have thought about it many times during the last month or more and every time I just didn't feel like it would help.  In fact, I have even thought about how many times I have written about the same things... over and over again.  Why do I keep writing about them? Because nothing's changed.  Nothing gets better.  It's just the same thing, day in and day out.  I'm sick and I wish I had more people around.  That is my life.


"The mystery of human existence lies not in just staying alive, but in finding something to live for." - Fyodor Dostoyevsky

For me, that is my children and my husband.  The unfortunate thing is that they are the only thing.  The good thing, though, is that I'm not selfish enough to ever leave my children, no matter how unhappy I am.

So, I continue on.  I exist.  I go through the motions of a life that I did not wish for... a life that makes me unhappy.  I pretend to be happy.  I pretend to be okay.... physically and mentally... while I'm not. That is my life... now and forever.

The Loss of a Beautiful Soul

Two weeks ago the world lost a beautiful soul.  Elias "Eli" Tomkins passed away from complications from tonsils, adenoids, and ear tubes surgery and Mitochondrial Disease.  My "mito buddy", Eli, was only 3 years old.  He was my "mito buddy" because he was my only "friend" with Mitochondrial Disease.  Just before last year's Energy for Life walk I had gotten in touch with Heather Tomkins, Eli's mom, to talk to her about starting a team for the walk again.  She brought Eli to the Shopping for a Cure fundraiser at my house. That was the first time I met Heather and Eli.  After that Heather and I became friends.

Eli was such a beautiful soul.  He was almost always smiling, despite all that he had to go through because of Mitochondrial Disease.  He was in and out of the hospital all the time.  Even when he wasn't in the hospital he had nursing care 6 days a week at home to help his parents take care of him.  He had a severe case of Mitochondrial Disease.  However, despite all of this, his death was still a surprise.  Most children with this disease slowly (and sometimes quickly) progress until they are finally put on hospice and pass away.  That was not what happened in this situation.  Eli had a scheduled surgery to have ear tubes placed and tonsils and adenoids removed.  That surgery occurred on Thursday and he passed away in the early morning hours on Sunday.  The surgery and anesthesia was just too much for his body to handle this time.

This is a true example of "life's too short" and you never know what's going to happen tomorrow.  Being a friend of Heather's, it was so heartbreaking to deal with Eli's passing.  A mother should never have to bury her son.  Each and every time I would talk to my friend or receive a text from her, my heart would break for her.  She just couldn't handle it.  I don't know how I would.

Mitochondrial Disease is SUCH a horrible disease.  I have heard of way too many deaths since I was diagnosed and, therefore, became involved in the mito community.  And I'm sure I will hear of many more.  I was not ready for someone so close to me to pass away this soon.  I know a lot of people from the mito community, especially because of my work with the EFL walk.  I would be bothered by the death of any of those people, but no where near like I am in this situation.  I am closer to Heather and her family than I am to anyone else in the mito community.  That's why I took it so hard.

I was so pleased that Heather gave me the opportunity to help by asking me to bake cupcakes that she wanted to have at the visitation.  So, it may have completely wore me out to make 100 cupcakes, but I didn't care.  I needed to be able to do something.  Something more than just saying "I'm here for you."

There are several fundraisers coming up in the next few months for the United Mitochondrial Disease Foundation.  When thinking about the fundraisers and thinking about whether or not you should donate, how much you should donate, if you should reach out to everyone you know to donate, etc. etc., please think about little Eli.  Think about Eli's mother, my good friend Heather, and how she's feeling right now after the loss of her child.  Think about the research that's being done to try to find an effective treatment for Mitochondrial Disease so that children like Eli could live FAR past the age of 3 years old.  If all you had to do was talk to your friends and family and convince them all to donate $10, think about how much that would help.  Then add that to all of my other friends and family doing the same with their contacts.  The possibilities!!!

Since I brought up the fundraisers, I want everyone to put these dates on their calendars.  I have already sent out a "Save the Date" email but a few people have still asked about the dates.  So here's a reminder...

Shopping for a Cure

What:  Shop from numerous vendors who will donate a large 

portion of their proceeds to UMDF

When:  August 17th, 2013

Details:  When it gets closer I will be recruiting vendors to participate.  Then I will, of course, need shoppers.  The best way to pass along the information is by word of mouth.  So I will be asking everyone to pass out fliers and tell their family and friends.

Energy for Life Walk

What:  Raise money for UMDF by getting pledges from all of your contacts 

before walking with Team Mito*Gone*Driacs.

When:  September 14th, 2013

Details:  As you're all familiar with, you will hear from me numerous times prior to the walk to remind you about fundraising, signing up to walk, volunteering, and recruiting others to join our team and fund raise with us.  I will be planning and organizing the walk again this year.  This time with help from the person who organized the walks/runs in the past.  If you're interested in helping us prepare for the walk, please let me know.  We would love the help.

The Worst Doctors Appt in my Life

Firstly, I want to apologize ahead of time for the long post.  I want to give everyone all of the details of the horrible doctors appointment I had which I couldn't do in a short post.  Not only do I want others to know about my experience because a few have asked, but I also want to make sure that no one else has to go through what I went through with this physician.

So, with that said...

I had the worst doctor's appt I've ever had in my life.  It was my 2nd visit with a new GI doc who supposedly specializes in motility issues.  I have a regular GI doc but I wanted to give her a try since she specializes in dysmotility.  The first appointment went well.  She said she didn't know much about mitochondrial disease and she'd need to study up on it.  She also wanted a copy of all of my records since I've seen multiple GI doctors up to that point and had lots of tests.  So the plan was to get the records to her and come back in a few months.  That's exactly what I did.

However, the second appointment, obviously, didn't go anywhere near as well as the first.  First, she explained to me that my GI problems are not because of my Mitochondrial disease, even though my mito specialist and my geneticist said they are. (ALL of my problems stem from my mito)  She said it is because of my POTS/dysautonomia (which is caused by the mito, btw).  She proceeded to tell me a bunch of other stuff regarding my mito that just wasn't true. I think she looked up the disease that my genetic test showed positive for and decided that's exactly what I have and I must have all of the symptoms of that. (Even though I'm not blind and that's the primary symptom.)  However, my mito specialist and geneticist both said that may be only part of what's causing my mito; that I may have a nuclear mutation that's causing my mito along with the mitochondrial dna mutation that normally causes LHON.  However, no matter what I said, she was right and I was wrong.  There was no way the patient was going to know more than her.

Then she saw that I am on pain meds and it all went way downhill from there (more so than it already was).  She said she couldn't treat me if I'm on pain meds and I'd have to get off of them completely.  My mom told her that wasn't going to happen because of the extreme pain my mito causes all over my body.  She then said "Well, then there's nothing I can do for you."

Why I didn't walk out the door right then and there, I don't know.  I can say that my mom was already up out of her chair getting ready to go.  I was determined to get somewhere with this doctor.  I had already seen her once and spent a lot of time getting records together, waiting 4 months for another appt, and driving to the office to see her.  I wasn't going to waste all of that time and energy.  Plus, she's a GI motility specialist and I want to be fixed!

At one point in the conversation the doctor said that she couldn't know for sure that I have gastroparesis (slowly moving stomach) without testing.  I proceeded to tell her that I have had lots tests done and she should have the records. That doesn't count the year and a half of symptoms of gastroparesis and colonic inertia... but, once again, that would mean she would have to listen to and trust what I said. She asked me what test I had done to determine that I have gastroparesis (even though she had all of my records right in front of her) and I told her that it was a gastric emptying study.  She asked me if I had it done there at the hospital she works at.  I told her "no".  She then told me that she doesn't trust the results of the test unless she's the one doing it.  Nope, she's not cocky at all!  My mom said that she could do the study and the doctor said she wouldn't do it as long as I'm on pain meds.  I then said, "Okay, how long do I need to be off of the pain meds for that?"  She told me 48 hours.  If she's a doctor at all she knows damn well that I can't get off of pain meds completely for 48 hours without getting sick from physiological withdrawls and that's not to mention the amount of pain I would be in. Trust me, I know from experience from the time that the pharmacy screwed up my order.  I was so sick and stayed that way even after I got the meds in my system.  Once something screws with my body (withdrawls, virus, etc.), the mito wreaks havoc.  However, I don't think she cared.

My mom explained to her that she had not discussed treatment even once.  She was so worried about what was causing my gastroparesis and colonic inertia (slow moving bowels) that she did nothing but argue with us about that instead of discussing treatment options.  Once my mom brought that up she quickly rattled off the names of a bunch of meds. She took 30 minutes to prove that she Googled Mitochondrial Disease and argue with me about the cause of my GI problems and less than a minute to tell me treatment options... and that was only because my mom asked.   She then said that none of them would work, though, because of the pain meds.  I then asked her "if nothing works because of the pain meds, then why does the domperidone help?"  Her immediate response was not the answer to my question, but instead saying that she cannot condone the use of domperidone since it's not approved in the US.  She said, "especially since you have cardiomyopathy".  When I told her that I don't, she even argued with me about that.  I know my own body, lady!!!  I'm pretty sure that when she looked up my disease on wikipedia and saw that it can cause cardiomyopathy, she assumed that I had it instead of looking at my records.  Obviously in her research she didn't find that there are over 40 different types of Mitochondrial Disease and within each type each person is different.

After I explained to her that I couldn't get off of all pain meds for 48 hours we were all basically done.  She had said that she wouldn't treat me as long as I'm on pain meds.  So my mom was definitely ready to leave at that point.  There was no reason to stay anyway.  As my mom was putting on her jacket and gathering our things, I proceeded to tell the doctor that I was actually planning on getting an intrathecal pain pump.  Because of that, I would not have the side effects of the pain meds anymore. (At that point I wasn't trying to get anything out of her anymore.  I was just trying to make her look foolish or feel bad for jumping to conclusions and saying that she wouldn't help me because of the pain meds.  Of course, it didn't work.  She's WAY too cocky for any patient to make her feel bad.)  That would then eliminate the one thing that she thought was causing my gastroparesis and colonic inertia/dysmotility..  Once again, I was wrong.  "Who told you that?" she said.  "You will still have the side effects of the meds while on a pain pump."  I explained that I had done a ton of research about intrathecal pain pumps for one; and, for two, the anesthesiologist that is my pain doctor informed me of that fact.  However, that didn't matter.  Just like she didn't care about what the mito specialist said, she doesn't care about what the pain specialist said.  She knew more than both of them.... and me, obviously.

She made it clear that she didn't agree with the fact that I'm on pain medications.  I cannot stand those doctors!  I completely understand why doctors have a problem with the frequent flyers that come into the ER all the time wanting pain medications because they're addicted and/or they sell it.  However, I have been diagnosed with a chronic disease that is occasionally fatal that is documented  to cause a significant amount of pain.  (see links below)  I am receiving those medications from a pain specialist who monitors my disease and my pain more often than any of my other specialists monitor me.
UMDF Mito 101 - page 6 of this pdf document in the section titled "Adult Symptoms".... coincidentally enough, the same page that contains a picture of me and my daughter (top left corner)!  Ha!
MitoAction Clinicians Guide to Mitochondrial Disease - Pain in Mito -
I want to point out one specific quote from this link - "Chronic pain in Mitochondrial Disease should be well managed as pain is a significant stressor and has the potential to lead to further decline and lactic acidosis." -

So, I can get off of the pain meds so that my GI system will work (even though I, and many of my doctors, don't think that will even make a difference), but I will be in excruciating pain 24 hours a day, 7 days a week.  But, of course, this doctor doesn't think about that or care about that because it seems that, like many doctors in this world, she believes that taking pain meds is the same as drinking a beer after work.  That it's just for recreation and they're not a necessary prescription for my illness.  However, they are just as necessary as my heart medications. (see quote above)

In the end my mom and I walked out of the room with the doctor still sitting there.  Out of all of the doctors I've met in my lifetime, both as a patient and a nurse/coworker, she was the most cocky, inconsiderate one and she could care less about taking care of me.  When I got out into the hall I stopped and told her that if she ever has the joy of seeing a patient with mitochondrial disease then I highly suggest that she doesn't act like she knows everything about mito and that she actually listens to the patient.  She, of course, argued back but I don't remember what she said.  I was SO pissed off by that time that I don't know if I even computed what she said.

I have never seen my mom that upset in a professional situation like that.  That's how I knew that I wasn't overreacting.  I know I have done so in the past (yes, I have overreacted before... I know you're all shocked, but, yes, it's happened) ... but, if anything, I was calmer than I should have been in that situation.  Well, on the outside that is.  The entire appointment was about nothing but arguing about the cause of my GI issues, which have been established a long time ago, treating me horribly because I take pain meds, and talking down to my mom and I.  She had no desire to help me get better.  All she wanted to do was make sure we knew how smart she is.

When I left the appointment my neck and face were more red than I have ever seen them.  Imagine a lobster...that's what I looked like.  I was not hyperventilating but my hands and feet were tingling. When I went to get in the car I could barely stand because of the weakness in my leg muscles.  I felt awful!  Not that I wasn't mostly aware already, but that definitely showed me how extreme stress affects my body.  The physical manifestations of my anger/stress were coming out left and right.

Obviously I'm not the only person who's had a bad experience with her.  Healthgrades reviews shows that only 25% of people who reviewed Dr. Esfandyari would recommend her to family or friends.
Health Grades - Dr. Tuba Esfandyari

So, if you are in the Kansas City area and you're looking for a gastrointestinal doctor who specializes in motility issues and you come across Dr. Tuba Esfandyari at KUMed, keep looking.  Dr. Tuba Esfandyari is NOT someone you want to see.

My Grandpa

Yesterday, I buried my grandfather. That was one of the hardest things I've ever done. He was the only grandpa I've ever known and he was very close to my heart.  I agreed to say something at the funeral.  I, of course, wanted to put something together ahead of time.  That was definitely the hardest thing I've ever written in my life.  I had a very difficult time putting it together.  What I had to do was tell myself that I was just writing a blog post about my grandpa, instead of writing something I was going to stand up in front of 50 people and say about my beloved grandfather the last time I will ever see him, his funeral.  That is what kept going through my mind when I was trying to think of what to say/write.  Now can you see why it was so hard for me to put it together?  (Not like you couldn't before I said that.)

So, since I wrote my "speech" like I was writing a blog post, I thought it only appropriate to share it with all of you, the people I share just about everything with.

Before I get to that, I have a little side note... I have received many emails in the last few weeks from readers of my blog.  I want to let you all know that I am not ignoring your emails.  I love hearing from you and fully plan on writing you back.  I have spent so much time and energy (energy that I don't have) with my grandpa in the last few weeks while he went from the hospital, to the nursing home, back to the hospital, to hospice, and finally, laid to rest.  I have had to spend what little energy I have left over with my family and on the many fundraisers I have committed myself to.  I will be catching up on emails and blog comments in the upcoming week(s).  Thank you for your patience and understanding.

Now, to my grandpa, who I love dearly.  May you rest in peace...

Why do I love my grandfather?  Let me count the ways...

I'm sure you're thinking, "He's your grandpa, of course you love him.  Everyone loves their grandpa.  That's just the way it is."  Well, yes, that's the way it is in life.  Everyone loves their grandparents.  Right?  This is different.  My grandpa is different.  There's no way to not love him.  Everyone loved him.  So, I didn't just love him because that's the natural way of things... because I'm supposed to love him.  I loved him because of who he was.

He was kind.  No matter who you are, my grandpa treated you with respect.  My grandpa grew up in a day and age that not everyone was treated equal.  He was no different.  Many times I would question my grandfather's views on people who are different than you and I.  I didn't always agree with the things he said.  However, he always seemed to surprise me.  Anytime we were out and about together I saw a completely different person than I expected to see.  I didn't see a person who treated people poorly based on the color of their skin or the religion they practiced.  I saw a person who respected everyone equally... who treated everyone with kindness.  

Because of that kindness, my grandpa had many friends.. many people who loved him.  I know it's cliche, but he would give the people he loved the shirt off of his own back if they needed it.  He was always helping others in any way he could.  After I got my nursing degree I was always trying to help him with anything medical related.  However, it wasn't as easy as it sounds.  Why?  You ask.  He wouldn't let me!  Every now and then he would call me with a question, but not as often as I wanted him to.  He would always say, "I don't want to bother you."  Before I got sick he didn't want to "bother" me because I was busy with my kids and my job.  After I got sick, he didn't want to "bother" me because he was worried I would be asleep or not feeling well.  That always drove me nuts.  Why?  I guess because I took after my grandfather.  I wanted to help!  All I wanted to do was help him.

He was smart.  I loved to sit and talk to my grandpa.  We would just sit and talk for hours.  We would talk about the war, his service station, current events, or whatever else we would randomly come up with to talk about.  I may not have agreed with all of his opinions, but I respected them none the less.  He had a reason for believing what he believed.  His life experiences gave him a view on life and I respected that.  I may not have agreed with it, but I respected it.

He was funny.  He was ALWAYS making me laugh.  Always.  I think his main goal was to make me smile.  If that's true, he succeeded.  He was always joking and playing around, when all he really had to do was look at you with his infectious smile.  He was joking so often that I didn't know when he was serious.  When I was a child, I had gotten in trouble one time (I was such an angel of a child, you see).  I was staying with my grandparents, as I often did during the summer as a child, and had gone across the street to visit with the neighbor without telling my grandparents.  When grandpa finally tracked me down he was, obviously, very upset.  He grabbed my hand and sternly walked me across the street.  As he did so, he said something to me to let me know how upset he was.  I laughed.  Yep... laughed.  He immediately let me know that he wasn't joking.  I always remember that day as the one day my grandpa wasn't kidding. 

He loved his wife and his family.  One of the best qualities my grandpa had was how much he loved his wife.  Out of all of the qualities I strive to imitate, the way he loved his wife is the best.  Even after 65 years of marriage he loved her more than ever.  They still held hands and kissed like they were newlyweds.  When he spoke of grandma it was always very apparent how much he loved her.  When I think of how I want my marriage to be, I always think of my grandparents.

I have spent a LOT of time with my grandpa.  However, it's not the empty time that won't be filled that I'll miss.  What I'll miss is the lessons I learn by talking to and being around my grandpa, the smile and laughter I always have when I'm with him, the kindness I experience when I'm around him, and most of all the enormous amount of love that I feel by being with him.  

Life continues to beat me down

This is has been such a difficult month for me.  If you have read my blog recently you would already know that.  It hasn't gotten any better yet.

The most important thing that's happening right now is that my grandpa is dying.  He fell and broke his hip a month ago.  Most people are well aware of what that usually means for an elderly person.  It hasn't been any different for him.  Last Wednesday (6 days ago) we decided to put him on hospice.  He had failed his swallow study. When he was still doing well he specifically stated that he did not want to have a feeding tube.  So hospice was the only choice.

I have been trying so hard for the last few weeks to have enough energy to be there for him, my grandmother, my aunt, and my dad while also dealing with my own emotions.  It has, of course, been very difficult.

"Dealing with my own emotions" has not just included the extreme sadness I'm feeling from dealing with my grandpa dying (who I have always been very close to).  It's also because of everything else I'm going through at the moment.

I am still feeling very alone despite being around people day in and day out.  Maybe that's because I can't even pay someone to come take care of me and/or hang out with me.  As I said in a previous post, my parents have offered to pay someone to help me out.  I was definitely extremely happy about that.  Whether my grandpa is sick or not, I really need help and haven't been getting any.  I thought maybe being able to pay someone would help.

I have now had 3 people who were going to do it and all 3 times have fallen through.  One of the three bothered me the most.  A friend of mine who I met through the mito community (she has a son with mito) updated her status one day a couple of weeks ago that she's available to babysit if anyone needs help because she and her family were needing some extra money.  I sent her a message saying that she could come babysit me.  After we established that I was actually serious, she was very interested.  We worked out all of the details and decided when she would start.  On her start day she texted me to let me know that she was sick and couldn't make it.  I let her know that was okay.  A couple of days later I texted her to find out if she was still planning on coming the next week.  She never responded... twice.

Of all people to do that, I wouldn't expect it to be a friend.  I can see that happening with a complete stranger but not a friend.  I just can't believe she wouldn't even give me the respect of letting me know that she couldn't do it.  I would've understood if she would have just told me.

Since then I have had one other prospect and that fell through as well.  So... my family and friends are too busy to help me and/or even call me to make sure I'm doing okay when I've been sick a lot recently (3 major crashes in the last month).  And now I can't even pay someone to help.  I have needed help more than ever over the last month with being sick so often, dealing with a family member who does nothing but stress me out, and my grandpa being so sick and now dying soon.  You know, awhile ago I tried telling myself that I just need to accept that my family and friends are too busy to help, or in some cases, help on a regular basis.  Now I guess I just need to tell myself that I may not find someone I trust to pay to help either.

I am having an okay day today... so far.  However, I have not been doing well at all recently.  There's just only so much stress and heartache a person can deal with and that amount drastically decreases when you add mitochondrial disease to the mix.

Oh yeah... I wanted to tell everyone about the worst doctor's appointment I've ever had.  I will have to save that for my next post.  I will tell you right now, though.  If you're in the Kansas City area, do NOT see Dr. Tuba Esfandyari.  She is the most cocky and rude doctor I have ever met in my life.  More to come on that.

Last, but not least, I wanted to let all of my readers know that I am sorry if I haven't written you back yet.  I have a few emails from readers that I have received over the last month.  I just haven't had the extra time or, especially, energy to write everyone back.  Once my grandpa passes and after the funeral, I'm hoping that I can write all of you back.  As I said in my last post, I REALLY appreciate my readers and greatly appreciate hearing from each an every one of you.  So please know that I have read your emails when they came through and have every intention of emailing you back... I just haven't been able to yet.

Life's too short... go hug your loved ones.          

To My Readers

I want to thank you.  I want to thank you, not just for reading, but for writing as well.

Over the course of the last almost three years that I have written this blog I have thought many times about why I do it.  I started this blog for a couple of reasons but have added more as time has gone on.  When I started this blog I wanted to do it for 2 reasons, and they were mostly selfish reasons at that.  I wanted a place to put my thoughts and experiences.  I also wanted a way of telling my family and friends what's going on in my life without having to repeat the same story, over and over again.  Like I said, that's changed.

I definitely still write the blog as a way of emptying my head.  It's an excellent way of getting all of my thoughts out and documenting all of my experiences with POTS/dysautonomia and/or Mitochondrial Disease.  I'm not great at journals.  Plus, handwriting things makes me tired.  You'd be amazed at how much muscle strength it requires to write.  I didn't mind the fact that I'm putting all of my thoughts and experiences in a place for the entire world to see.  Like I said, I actually wanted that aspect of a blog because then I could use it as a place for my friends and family to get information about me and my illness, how I'm doing, etc.  However, I learned that I didn't need to write my blog for that reason because I found that not many people read it in the first place.  So I was keeping everyone updated by writing in my blog and then I was repeating everything on the phone with different people who don't read my blog.  So, obviously, that reason for writing my blog was invalid.

I still had the initial reason... a place to get things off of my chest.  However, as time went on I realized that there is another reason...  To create a place for others with Mitochondrial Disease, POTS, or any other chronic illness to come to feel like they're not alone in this world.

I share so much of my life on this blog.  I don't hold much in and I'm not shy to talk about things that many people would be too embarrassed to talk about (poop, vomit, altered anatomy, etc.).  I am always very honest in my life and even more so on my blog.  I don't hold much of anything back.  In fact, I have a hard time, myself, with making sure that I don't share too much.  However, the fact that I share as much as I do has helped many people.

Whether someone has mitochondrial disease, POTS, or some other chronic illness, a lot of my readers and I have a lot in common.  I know that one of the things that has helped me through the journey of living with chronic illness is knowing that I'm not alone, that there are people out there who are dealing with much of the same stuff I am.  It is always so refreshing to read someone's blog, post on facebook, or comment on a message forum saying that they're dealing with something I have to deal with all the time as well.  Whether it's the emotions, physical symptoms of the disease, the grieving process after losing your life as you knew it, or any of the many other problems we deal with because of chronic disease, it's SO nice to know that someone else in this world is dealing with the same thing. THAT is one of the main reasons why I now write my blog.

I have received many comments and even more emails over the last couple of years from readers saying how much they appreciate my blog.  They appreciate my honesty and the fact that I am putting myself out there for the whole world to see.  One thing I didn't mention above is that I also use my blog to raise awareness of Mitochondrial Disease.  That is something else that my readers have appreciated.  I have been thanked for writing as much as I do because it has helped them in their journey to finding a diagnosis, a better doctor, etc.

What my readers don't know is that you're all helping ME.  I love getting letters/emails from my readers.  It is SO special to me to hear that not only is someone reading my blog, but they enjoy it, and it has helped them in some way, shape or form.  It means so much to know that my constant babbling and bitching actually helps people.

I know how much it means to me to read someone else's blog because it helps to remind me that I'm not alone in this fight against Mitochondrial Disease.  How I didn't think about my blog helping others in the same way, I don't know.

I want to share a few quotes from some of my readers who have really touched my heart and helped me to realize that writing my blog helps others too...  (I did not get permission from all of the people I quote below.  Therefore, I am not using names.  If you want me to use your name or delete your comment, please let me know and I will do so immediately.  Thanks.)

-"I found your honesty (not bitching, as you call it) to be refreshing and somewhat emotionally fulfilling and healing."
-"Your blog was a gift to me tonight... in so many ways."
-"You have a great talent for putting things into perspective."
-"I keep you in my prayers and think you are brave and inspiring."
-"You wrote spot on... the mito world needs you."
-"It was beautiful to read your story... it is so real... thank you."
-"...I just wanted to let you know how much your blog means to me."

I want you all to know how much you mean to me.  All of my readers are special to me... whether I know you or not.  Many of you, as you can see from the quotes, have stated that my blog has helped you.  Well, you all, and your emails have helped me.  You all have reminded me why I do this... why I open up so much for the entire world to see.  It makes me feel wonderful to know that I am helping someone, even if it's just a little.

I may not be very good at responding to your emails very quickly, but I appreciate each and every one.  The most recent one, which I still haven't replied to yet, even brought tears to my eyes (good ones).  So, please understand that I want to reply but don't always have the energy to do so right away, and be patient.  I will get around to replying eventually.

So, THANK YOU readers!  If it wasn't for you, I wouldn't have a blog. And if it wasn't for your kind words, I would never know that I even have readers and how much I am appreciated.

If you have ever considered writing to me, and haven't, please do so.  I love to hear from my readers... even if it does take me a bit sometimes to respond.  I am ALWAYS open for questions, comments, etc.

Thank you, again.
Robin