Chronic Disease = Chronic Loneliness

First, a little update for those that want to keep up....
Last week I had a mito crash.  It was a typical mito crash, as mito crashes go.  Well, maybe a bit worse than typical, I suppose.  I had one day of nausea and vomiting followed by multiple days of extreme fatigue, weakness, and headache.  In fact, the day following my n/v I was probably weaker than I've ever been.  I slowly got better as I always do.  Well... kind of.

Last Sunday I thought I was on my last day of my crash.  I was at about 75% of my "normal" self after a crash that started on Tuesday.  We went to my in-laws for our Christmas gathering.  I felt okay the entire time I was there, minus some weakness (that's the 25% I'm referring to).  When we were heading home I started to feel horrible (nausea, headache, weakness).  The next day I didn't eat much and felt a little nauseous.  The day after that is when I really couldn't eat anymore without vomiting.  It's now Friday and I've barely eaten in the last 5 days.  I can only keep soft foods and liquids (shakes, pudding, ice cream, etc.) down and that's only if I eat a little bit at a time.

So, needless to say, it's been a tough couple of weeks.  Funny thing is that I was going to post at the beginning of last week about how good I had been feeling.  My last post, in fact, was right in the middle of when I was feeling good.  However, I wanted to discuss the doctor's appointment so I thought I'd wait until the next post to tell everyone how awesome of a week I had.


It was amazing.  I left my house to do something every day a couple of weeks ago.  I had a doctor's appt one day, visited my grandparents the next, had a meeting with social services to get help for Christmas presents and a meeting with my daughter's school counselor the day after that.  That was all just on Monday, Tuesday, and Wednesday.  I don't recall what I did the last 2 days of the week but I went out.  I couldn't believe how well I was tolerating it all.  Of course, while I was hopeful that I would continue to feel that way, I was also waiting for the shit to hit the fan, per se.

Well, the shit hit the fan.  And it's continuing to do so.

I am very thankful that the last time I was in the hospital my doctor changed my IV fluids to daily instead of 3 days a week.  I have also had days over time in which I didn't use my fluids.  Therefore, I have some extras.  Right now, since I'm barely able to eat or drink anything, I've been trying to take in a liter and a half a day.  That, along with the very little bit I've been able to take in food wise, has kept me above water so far.  However... I don't know how long I'll be able to continue at this rate.  No matter what, I will be okay until after Christmas.  I will make sure of that.

On another note...


Being sick is lonely.Very lonely.

As you may already know from my blog, I don't have a lot of friends to begin with and most of my family is barely there (except for my loving parents).  When a person is sick, including myself, they will lay in bed and watch tv or read, and feel bad.  That's about all a person can do when they're sick.  That's all I can do right now.

The only connection I have to the outside world when I'm sick is the phone and the internet.  Mostly the internet since many times I am not up to talking on the phone.  I am on Facebook all the time.  I update my status on a regular basis.  I'll be honest.  I update it for two reasons.  One, to let my family and friends know what's going on.  Two, to know that I have family, friends, and other mito supporters that are there for me and care.  However, the 2nd purpose isn't working so well.

I have almost 350 facebook friends.  Many of those are from mito support groups.  I am always seeing people updating their status with how they're doing or what's new with them or their child with mito.  I, along with multiple other people, am always commenting saying that they're in our prayers (obviously that's from the other people) and thoughts, etc.  Mainly just letting everyone know that we're there for each other.

I also have a couple of friends who I talk to outside of facebook (in addition to facebook) who also deal with mito on a regular basis, whether it's themselves or their child.  I feel as though I am a good friend to a few of those people, in addition to my other friends who aren't dealing with mito.  I have gone out of my way many times to be there for friends when I feel like they need me.  Whether it's via text, phone, email, or facebook, I am constantly checking in on those friends who're dealing with mito and their kids.  I genuinely care about these people, even the ones I've never met in person and just talk to on facebook.

It may be for Epilipsy awareness,
but it applies to all diseases/illnesses.

So... why do I feel like it's never returned?  When I'm sick I'm not getting texts, emails, phone calls, etc. from friends or other people from the mito group checking up on me.  I don't have 10-15 people responding to my facebook status updates letting me know they're praying for me, thinking about me, or just letting me know they're there if I need someone to talk to.  No, "I'm so sorry you're feeling so bad right now," comments.  No, "I hope you're able to stay out of the hospital" comments.

I thought that being a good friend/person meant that people would be a good friend in return.  Don't get me wrong.  I'm not doing it because I want something in return.  I just like being a good friend.  I like making people feel good/better.  I just wish I could have a friend that did the same.

Laying in bed feeling horrible sucks.  Laying in bed, feeling horrible, and feeling like no one (except my husband and parents) gives a crap day after day is just plain miserable.   

Here is a great article on Chronic disease and loneliness - Chronic Disease: Plugging In
Another article by the same author.  He takes the words right out of my mouth... The loneliness of chronic illness

I agree with almost everything in the article and am right there with him.  On my "good" days I try my hardest to keep myself busy and "plug in" to the world around me, especially the mito world.  That is why I have done so many things to stay involved in the mito community; because I can feel better about myself for doing what I can for others who are suffering like I am.  In addition to the Energy for Life walk, I have attempted to organize a gathering for people dealing with mito in the KC area.  I also plan to help with support group planning in 2013 and have already discussed it with umdf.  I also comment on statements made in the facebook mito groups to try to help others as well.  However, as the article states, it's difficult, especially when I'm too sick to do anything or go anywhere, to remain "emotionally upright" and to "resist the never ending urge to crawl into a hole."  (Cohen, 2011)

No matter how much I try to make myself feel better emotionally, I can't do it as long as I am going through this so alone; without much support from friends, family, and even strangers.

Another couple of sentences from the article really stood out to me as well...  "Connections matter... Maybe the human touch, even on the phone, reassures us we are not standing alone on the battlefield, fighting for our lives. ... No matter how supportive family and friends are, it is wrenching for us to feel so along." (Cohen, 2011)

Another Day, Another Doctor

I had an appointment earlier this week with a Gastrointestinal Motility Specialist.  She is a normal GI doc who specializes in motility issues (the movement of materials through the GI tract).

I have been looking forward to this appt. for months, especially since it took over 4 months to get in.  She was very thorough.  It was a good test of my memory, that's for sure.  The funny thing is that I have kept a 3 ring binder full of all of my medical records for awhile now.  I almost always take it with me to appointments with new doctors.  That way, if they ask a bunch of questions, and I don't remember the answer, I can just look in the notebook.  However, the last couple of times I took the binder with me to an appointment, I never even opened it.  Soooo I quit taking it.  You know how many times I wished I had that binder with me at this appointment???  (Of course, it's not updated so it still wouldn't have done me any good, but you get the drift.)

After asking a bazillion questions, she had me get up on the table and she examined me.  Then we talked.  She wants me to change the prescription laxative I'm on to over the counter bisacodyl (name brand - Dulcolax).  She also wants me to take a bowel prep once a week to "clean myself out".  If you're not familiar, bowel prep is what's used prior to having a colonoscopy.  Not fun!  However, I'm not real sure it's going to be that bad because the bowel prep barely worked for me when I had to use it for my colonoscopy.  I did the bowel prep and then I still had to have 5 enemas.  Even then, the GI doc at the time said that I still wasn't fully "cleaned out." (As always, I'm sharing a whole hell of a lot about myself... all in the name of blogging.)  

I was worried about two things going into this appointment.  The first being that she would not believe I have mitochondrial disease.  Yes, doctors still doubt the diagnosis despite having a muscle biopsy and genetic testing to prove it.  And two, that she would blame all of my GI motility issues on the narcotic pain medications I've been on since after my POTS diagnosis.

However, I ended up being worried for no reason.  She did not doubt my mito diagnosis at all.  She asked a lot of questions about the pain meds but never brought up any concern that they were the cause of my GI problems.  FYI... I was on a medication (Relistor) a few months ago which counteracts the effects of narcotic pain medication on the GI tract.  The GI doc I've had for a little less than a year who put me on the Relistor also thought, at first, that the narcotics were causing all of my GI problems.  However, since the Relistor didn't work, it proves that my problems are not from the pain meds.

When I left the appointment I actually felt a little down.  At first I couldn't figure out why I felt that way, but after a bit of thought, I figured it out.  If you have ever read my blog before you probably think that I have resigned myself to a lifetime of being sick.  Sometimes, okay, most of the time, I probably display to the world that I don't hold out much hope of getting better.  A lot of people call that being negative.  I call that being a realist.  Well, contrary to popular belief, I still hope and dream that I will be better again.  I am also in denial every now and then.  Usually I keep both of those things hidden from the world and buried deep inside.  That way, I can't get hurt when those hopes and dreams don't come true.

Well, it obviously doesn't work.  Come to find out, I was looking forward to my appointment with the GI motility specialist because I was holding out hope that she would have a better solution to my GI dysmotility. Instead, she said something that my previous GI doctor hasn't said.  She said that I will be on laxatives to keep my system moving for the rest of my life and that there's not a whole lot more she can do. The only change she made was what I discussed above and the only reason she did that is because the medicine I'm currently on causes a lot of bloating.  However, she didn't have any solutions to the lack of motility of my entire GI tract.

Those statements ended up being harder on me than I imagined they would.  I guess I just held out too much hope that she, being a motility specialist, would have a better solution to my problems and would, therefore, be able to keep me from needing a G/J tube (feeding tube) in the future.  However, if the motility specialist at a huge academic hospital doesn't have any better solutions, I'm probably out of luck.  So that explains why I was little down/sad after my appointment.


On another note, while I'm talking about my current health status...  I have ANOTHER UTI.  That makes 4 in 13-14 months.  That means that I need to see a Urologist.  There's a good chance I have something called neurogenic bladder.  One more thing to add to my list of health problems that are caused by my mito.  You know, since I don't have anything else to worry about.  I'll update on the bladder situation when I know something.