Wednesday, December 29, 2010

Merry (belated) Christmas and Happy (early) New Year!

I hope everyone out there had a great Christmas.  I did.  I love watching my girls open their gifts and waking up with them on xmas morning to see what Santa brought.  In a time that I haven't had a lot of happiness, that brought me a lot of joy.  Since we have had so much financial trouble since I quit working, my daughters haven't received much extras recently.  It was nice to see them happy to get new things.

As I have already stated, I have had a rough month.  My trip to Atlanta and my muscle biopsy made me feel awful for about 2 weeks.  Then, I had a minor cold.  However, a minor cold puts me on my ass because of my illness. 

The good news...  I have had a great couple of days!  Yesterday I actually had some energy for a change. About the same amount as I have for the last year, not like I had prior to POTS invaded my life.  BUT, any energy is good since I haven't been able to get out of bed or off the couch for the last few weeks.  I actually ran a couple of errands, with Kylie's help.  Then, today, I haven't had as much energy but I forced myself to get out of the house just to return a movie and treat myself to Starbucks with a gift card I got for Christmas.  Yum!  Now, caffeine and POTS do not get along together well, but every now and then I treat myself and deal with the consequences.  When I got home I paid some bills.  I actually had money to pay them, too, which really puts me in a good mood.  And now I'm back to the couch.  After all of that, I'm done.  However, I am still in a pretty good mood.  That's saying a lot.

Now I am looking forward to "girls weekend" in 3 weeks.  A few of my girlfriends and I are going to the lake for the weekend for a little fun.  We are just going to sit in front of a fire, drink, play games, read books, laugh, etc.  I can't wait! 

I also got a good idea from my aunt.  I would've never, in a million years, thought I would start the hobby of knitting, crocheting, or cross stitching.  However, I started cross stitching yesterday.  I needed something other than reading, watching tv, or playing computer games to keep me busy.  I have recently been getting bored with those things.  I think this will be great because I am such a goal oriented person.  This way, I have a goal to complete a project.  I bought something that I can make for my friend's twin boys that she just delivered today.  :-)

Everyone have a Happy New Year!!!  I may actually get out on NYE and go see Tron.  Of course, I'll still be in bed by the time midnight comes around.  Does anyone have any good plans for new years eve?

Much love to all my friends and family!

Wednesday, December 15, 2010

I'm having a pity party. You're all invited.

I have really had a tough time recently.  I quit working December 1st of last year.  I may have had problems prior to that, but that's the date that I feel that I officially became disabled, or chronically ill.  Therefore, it's been a year now.  That realization has really gotten to me.

This was all supposed to be temporary.  Being sick, not working, being financially unstable (that's putting it very lightly).  It was all supposed to be temporary.  I understood that it would take a few months, maybe up to a year, but it's been a year now and I'm not getting better.  Not only that, but I still don't even know exactly what's wrong with me.

I'm not supposed to be one of "those people".  Someone who takes pain medicine every day.  Someone who is stuck inside, watching commercials about disability lawyers, everyday.  Someone who struggles to get doctors to believe that they're sick and in pain.

I'm not supposed to be one of "those people" that has to have their family "adopted" for Christmas.  I'm supposed to be helping others; adopting other people's family.  I'm supposed to support myself and my kids.  I'm supposed to give to charity, not receive it.  I'm supposed to continue to advance in my career, not move backward, or not work at all.

I'm not supposed to be one of "those people".  Someone who has to fight to convince social security that they really are disabled and not just being lazy and not wanting to work.  Someone who hardly ever sees friends because they don't feel well enough to go anywhere.  Someone who you can't stand to ask how they're feeling because the answer is always negative, and you don't know what to say.
Feel free to play this while reading.

I am so sick.  I'm sick of being sick.  I'm sick of being in pain.  I'm sick of being so fatigued I can't walk up a flight of stairs, or do a load of laundry, or make my bed, or take a shower without it wearing me out.  I'm sick of dealing with doctors.  I'm sick of not being able to work.  I'm sick of being poor.  I'm sick of being lonely.  I'm sick of trying to convince people I'm sick.  I'm sick of needing help and not getting it.  I'm sick of needing support from (certain) family and friends and not getting it.  I'm sick of having to rely on other people all the time.  I'm sick of acting like I'm fine when I'm not just so people won't have to listen to be bitch, because I know they're sick of listening to me bitch.  I am really sick of it all.

So, for Christmas this year, I don't want to be healed, because I know that's not going to happen.  I would however, like to be understood.  Or, I would like to be approved for social security disability so we can be less in the hole every month.  Or, I would like more company every now and then.  Or, I would like to hear from (certain) family and friends more often.  Or, I would like help with things around the house or the kids.  Or, a better paying job for my husband. Or... Or... Or...

I would just love for things to start finally looking up.  Just one good thing.  Please.

I know, things could be much worse.  I understand that.  I am very grateful for the things I do have.  I am grateful that my kids are healthy.  I am grateful that my husband has A job, even if it doesn't pay crap.  I am grateful that we haven't lost our house yet.  I am grateful that my parents have been able to help us as much as they have.

However, this is my pity party, and I'll cry if I want to.  You would cry too, if it happened to you.

Saturday, December 11, 2010

Home Sweet Home

Chris and I have made it home from Atlanta safely.  The ride home was a lot longer than the ride there, even though it took the same amount of time.

I am so glad to be at home on my own couch, with homemade food, and around my girls again.  I missed both of them very much.  Of course, 10 minutes after arriving and already getting 9 minutes worth of attitude from my 12 year-old made me realize that I could've probably gone a few more days without that.  :o)  My 4 year-old, however, I couldn't have waited any longer to spend time with.

I have spent time with them both, as much as I feel up to, since we got home.  I took some time to read with D (my youngest) last night.  I have started teaching her how to read.  She is so smart.  I know, I'm biased.  However, I don't remember K (my oldest) being able to do what D can do at her age.  I am so grateful for the preschool that she is in for teaching her so much.

To update you on the rest of my Atlanta trip...  On Wednesday I had my muscle biopsy.  Before I went down there, I was under the impression that it would be under general anesthesia.  Then, Dr. Shoffner told me it would just be under local.  THEN, when I got to the outpatient surgery center, they told me they were going to put me out for it.  Geez, make up your mind people.  ;-)  So, I got a little "Jackson juice", as my former coworkers and I used to call it.  That's Propofol, the drug that Michael Jackson overdosed on.

I didn't realize how much the biopsy was going to affect me.  They took a small piece of muscle and skin from my left thigh (quadricep).  It has been more painful that I expected.  The surgeon must have severed a nerve as well because the lateral portion of my leg is still numb, three days after the surgery.  I'm hoping that goes away because it's really annoying when I go to scratch my leg and I can't even feel it.  The pain is definitely getting better, as would be expected, as is the weakness.  The day of my surgery and the day after, I could barely walk due to weakness in both legs.

I was tired of sitting in the hotel so Chris and I went to the Georgia aquarium in the afternoon after my surgery.  I walked all around and got so much exercise.  Okay, just kidding.  Chris got a wheelchair from the aquarium to push me around in.  He picked me up at the car with it and dropped me back off at the car when we were done.  The only time I was out of the wheelchair is when I had to go to the bathroom.  I know I still probably shouldn't have done it, but sometimes taking care of your mental health (happiness) is just as important in the healing process as taking care of your physical health.
The tentacles are about 7 feet long!

Touching the sea anenome

That fish is almost as big as I am

It definitely made me happy to go to the aquarium.  It was the coolest thing.  I shared a few pictures so you could see how beautiful some of it was.  I highly recommend it to everyone, if you're ever in or around Atlanta.  However, when we got back to the hotel, Chris had to almost carry me into the hotel room.  I think I was both exhausted and hungry; a bad combo for me.

So now I wait.  This is going to be a long 6-8 weeks.  It doesn't make it any easier that the trip and surgery really did me in.  I was in bed almost all day yesterday, the day after we got home.  Today I have been resting on the couch all day.  My legs are weaker than they were yesterday, which is weird because they should be stronger after resting them all day.  My heart rate is irregular again.  It has done this before, when I had a UTI.  I think it's just PVCs, but I can feel each and every one.  And when it happens a lot (every 6 or 8 beats), it starts to make me feel crappy as well.

So, I rest.  And write on my blog.  I do know that after hearing what the doctor in Atlanta had to say, and knowing that I will have results sooner than later, my spirits are definitely lifted.

"There's nothing half so pleasant as coming home again."  - Margaret Elizabeth Sangster

Tuesday, December 7, 2010

Moving right along

Chris and I drove to Atlanta, GA yesterday.  It was a long drive, 12 hours, but actually went by fairly quickly.  I got an audiobook from the library and we listened to that most of the way.  I appreciate the recommendation from my step-mom.  I also enjoyed the time alone with my husband.  I am still enjoying that, in fact. 

This morning I had two appointments.  My first appointment was a combination of multiple pulmonary function tests and an exercise stress test.  Immediately following that was my appointment with Dr. Shoffner.

I will discuss the good stuff first.  :o)  My appointment with Dr. Shoffner was excellent.  He is a very nice guy.  The greatest thing of all happened...  A doctor validated my feelings that something else, other than POTS, is going on.  He had basically memorized my chart and all of the test results I had sent him.  I mean, he obviously didn't know the exact lab values, etc, but he knew what tests I had had done and whether they were positive or negative.  He had obviously spent plenty of time reviewing my chart. 

Dr. Shoffner said that he was pretty sure that I have a neuro-metabolic disorder.  He thinks that POTS is just a part of that.  The symptoms I've been experiencing lead him to believe that he will find something in my muscle biopsy tomorrow.  There are numerous neurometabolic disorders that he will be checking for, including, but not limited to, disorders involving fatty acid oxidation, glycolosis, and mitochondrial myopathies.  He said there is a very small chance that it's auto-immune, but he will check for that as well.

My physical exams have been normal every time I've seen a doctor.  Dr. Shoffner stated that that is normal for the disorders/diseases he thinks I may have.  Many doctors rely on the physical exam to determine the level of muscle weakness.  As he stated, you have to have a significant amount of muscle weakness before it is visible on exam.  He did say, however, that he noticed a very small amount of weakness in my arms in the exam.  I told him that it may be more noticeable because I had just done the exercise test and I was very fatigued.

My exercise tests were the biggest clue that something, other than pots, is wrong.  The fact that my VO2 max was so low is indicative of a neurometabolic disorder.  He said that with my history of cardiovascular exercise, my previous exercise stress tests would not have been as bad as they were, even with pots.  That, and the amount of fatigue I experience after little activity, are the two biggest clues to him that I have a neurometabolic disorder of some type.  I asked him if he thought, prior to seeing the results of my muscle biopsy, that I have something other than just pots.  He said that he would not have let me travel to Atlanta if he didn't think I had a neurometabolic disorder.

Tomorrow I will have a muscle biopsy.  It will be under a local anesthetic and it will come from my upper thigh.  Dr. Shoffner stated that it will take approximately 6-8 weeks to get the results.  He will send the results to me as well as the neurologist who recommended the muscle biopsy.  At that time, I will make another appt. with him to discuss the results, prognosis, treatment options, etc.

The bad part of the day was the exercise stress test (my third one) and pulmonary function tests.  It took an hour and a half to do all of the tests.  I couldn't eat before the tests.  This made it ten times worse.  Since I had to be there at 9am and I couldn't eat for 3 hours prior, I couldn't eat breakfast.  I hadn't eaten since dinner the night before.  I had to do almost 30 different breathing tests.  After that I had to ride a stationary bike for 15 minutes.  It was tough, but I pushed through it.  My legs felt like jello when I was done, still do.

After the appointment with the doctor, we immediately came back to the hotel room.  I have been laying in bed ever since.  It's going to take me awhile to recover.  On that note, I'm having trouble concentrating, I don't have the energy to type, and my head is killing me.  Until next time...

Wednesday, December 1, 2010

This NEVER happens...

...I was wrong.  I know, you're probably as shocked as I am.  I do not have an ovarian cyst after all.  The ultrasound was negative.  That's great news!  Right?  Wrong.

If my abdominal/pelvic pain was caused by an ovarian cyst, I would start birth control pills again and it would probably go away like the last one did.  Easy solution.  But, it's not an ovarian cyst.  So now what?  Why am I having this awful pain?  As with all of my other symptoms, it gets worse as the day goes on.  This morning I felt pretty good.  Tonight it's a different story.  I took some pain meds and a hot bath and I'm doing a little better at the moment though.  I guess this will just be one more question for the neurogenetisist that I'm seeing in Atlanta next week.

Speaking of that... I getting things ready, making plans for the kids, and making sure everything is all set for our trip next week.  We are driving down to Atlanta on Monday the 6th.  I have an appointment with the doctor and one test on Tuesday.  Then, I have my muscle biopsy on Wednesday.  We will stay the night Wed. night and leave on Thursday. 

I have been told that I will not get the results of the biopsy for 10-12 weeks or more.  So, once I have it done, it'll be another waiting game.  I'm ready for some definitive answers.  I am also ready for a doctor who won't blow me off when I tell him/her what's wrong.  So far I've had one doctor, my cardiologist, who has taken the time to listen to me and actually try to help.  Unfortunately, he's reached his limit.  There's nothing else he can do for me.  So I really hope this doctor in Atlanta can help me out.  Hopefully he can also help me find a doc here in town that can continue to help me out.

I am very grateful that my mom and my mother-in-law are helping us out by watching the girls while we are gone.  It's so wonderful to have family around to help out in times like these.  Someday I'll be able to return all of the favors.  :o)

As many of you know, I have applied for social security.  Although I don't have the support of my primary care doctor, I have gone ahead and continued with my application.  My husband and a good friend/former coworker both wrote letters of support that I sent in with my paperwork.  I am also waiting on a letter of support from one of my previous supervisors.  I have also requested a letter of support from my cardiologist.  I don't know if I'll get it, but it's worth a try.  Unfortunately, I made the mistake of applying prior to asking my doctors to support me.  I hoping, however, that I will get approved regardless.  If I don't, I will appeal.  By the time I am able to get an appeal I will make sure that I have the support of one of my docs.  Plus, by then, I will also have the results of my muscle biopsy.

One other thing I was going to mention...  To those of you who read my blog who also have a chronic illness, I want to recommend a book.  I have been slowly (very slowly) reading it for the last few months.  I usually just pick it up and read a few pages every now and then.  I need to, however, read it more often.  I was reading it while in the bath this evening and I really think it helps with my attitude towards all of this chronic illness bullshit.  The name of it is "Being Sick Well: Joyful living despite chronic illness" by Jeffrey H. Boyd. 

Some of it has been more difficult for me to read, but may be very helpful for you.  I am not religious.  In fact, I am an atheist.  I don't use that word very often, it sounds weird to hear myself say it, or type it.   (I will get into the whole religion discussion some other time.)  Much of this book talks about how Christianity and God will get you through rough times.  However, even if you aren't religious, like me, much of the book talks about other ways to help you deal with chronic illness.  Pick it up at the bookstore or library the next time you get the chance.

Being Sick Well

And with that, I will leave you with a quote...

"A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from his illnesses".  - Hippocrates

Monday, November 29, 2010


There are two different kinds of pain.  Emotional pain and physical pain.  I have had no shortage of either in the last year.  Recently, my physical pain has been getting a lot worse. 

I have been in pain since all of this started.  In fact, it all started with a headache.  A headache that got more severe and more frequent, nonstop in fact, as time went on.  I still have headaches.  Fortunately, or unfortunately, I have gotten used to them.  Even though I still have a headache almost 24/7, I have been able to keep them to a tolerable level most of the time.

Last November, I started experiencing muscle pain and tenderness.  It started in my upper legs and butt (glutes).  Ever since then, it has progressively gotten worse.  I never thought I would be the person who had to take pain medicine daily.  Well, I'm that person.  The pain in my hips (I say hips because it's easier than saying upper legs, butt, and lower back), has gotten to the point where I am limping around half the day.  As the day goes on, the pain gets worse.  Over the last month or more I have really noticed the pain getting worse and worse.  As if the fatigue, shortness of breath, and every other symptom wasn't bad enough!

In addition to the pain caused by my dysautonomia/POTS or whatever chronic illness I have, I have also had to deal with the pain of an ovarian cyst.  A few months ago I was having sharp pain in my lower right abdomen.  It would come and go but I also had a constant dull ache in addition to the intermittent sharp pains.  I had an ultrasound and it showed that I had an ovarian cyst.  I went on birth control pills to try to get rid of it and luckily it went away without surgery.  Unfortunately, it was causing me a lot of discomfort while waiting for it to go away. 

Well, guess what!  I am almost certain I have another one.  Same side.  Same pain.  But this time it's been worse.  I have been in tears today because of the pain in my abdomen and lower back.  The pain meds I've been taking for my chronic muscle pain have not been helping the pain in my abdomen. Lucky me!

As if I needed something else!  I got in with my ob/gyn tomorrow and I will see what she says. 

I will say that I had a few things on my mind that were getting to me today.  Since my pain got so bad this evening, I haven't given one thought about any of those things.
And with that, I will leave you with a quote...

"The only antidote to mental suffering is physical pain. " - Karl Marx

But not always.

Tuesday, November 23, 2010


Well, it's been awhile since my last post.  Honestly, I just haven't felt like it.  I have been distracted by a lot of things in the last couple of weeks so I haven't wanted to sit and type.  I do, however, need to give everyone an update.  A few things have happened recently.

First of all, I quit my job.  For those of you who read my previous post(s) about my problems with co-workers and my former boss, you probably think that that's why I quit.  I will say that was on my list of reasons.  However, it was at the bottom and only a small percentage of the reason.  I just felt like I couldn't do it anymore.  Some of my symptoms have been increasing recently, primarily my muscle weakness/fatigue, muscle pain, and general fatigue.  The twelve hour shifts were just too much.  I almost always felt bad by 10am, and I still had 9 hours to go.

When I started working PRN as a monitor tech, I did it thinking that it would just be temporary.  I wanted to use it as a stepping stone back to my full time career as an RN.  I had anticipated getting better over the course of the last year, not worse.  I also didn't think I would still be trying to figure out exactly what's wrong with me. 

I will have to admit that I also wanted to stay at that hospital because I, at one time, considered my emergency room co-workers to be like my second family.  I wanted to continue to work there even if I wasn't in the ER because I thought I still had the support of those people.  After many months of trying to hold on to friendships that just aren't there, I finally realized that it was time to come to my senses and move on.

So that's exactly what I'm doing; moving on.

Now on to the next order of business, and another way that I'm moving on... 

I have an appointment with Dr. John Shoffner at Medical Neurogenetics in Atlanta, Ga on December 7th.  On the following day, I have an appt. for a muscle biopsy to test for mitochondrial disease and possibly other neuromuscular genetic diseases. 

This appointment is a long time coming.  In October, I saw a neurologist at KUMed.  He finally recommended that I have a muscle biopsy.  I have done lots of research on mitochondrial diseases as well as other neuromuscular diseases.  I have wanted to get a muscle biopsy since I returned from Mayo.  After I started developing worsening muscle pain (to the point that I now take pain medicine daily for it), worsening fatigue, and had done more research I knew I needed a muscle biopsy. 

I have talked to someone who has POTS and has been diagnosed with mitochondrial disease; by Dr. Shoffner in fact.  He referred me to Dr. Shoffner and informed me that that is one of two locations in the U.S. that does fresh tissue muscle biopsies, which are the best when testing for mitochondrial disease.  Thank you, Todd, for saving me so much time and money by recommending that I go to Atlanta.  I also really appreciate being able to talk to someone who's been through all of this already.  Someone older and wiser.  ;-)

On that note, I am started to get tired of typing.  I have much more to say so I will try to post more often. 
I hope you all are well.  And thanks for reading. 


Wednesday, October 27, 2010

Today has been an okay day.  I have been keeping myself very busy.  I have pushed myself to keep busy, even though I have physically felt awful.  The physical symptoms I can deal with.  I can sit and rest.  I can take pain meds.  I can distract myself with stupid mindless games on facebook.  The emotional stuff can be tough, though.  I have a hard time turning off my brain.  There aren't meds to make that stuff go away.  Well, there are, but they are either illegal or I don't have a prescription for them.

To my true friends, the people who have been there for me and supported me from day one of this whole crappy ordeal...  I appreciate each and every one of you.  Most of all, I just want to say thank you for still being there.  Thank you for realizing that I am going through a rough patch right now and I might not be myself.  I might not be the same kind, happy person I was before all of this started.  But I will return to that.  I am returning to that, slowly but surely.  My true friends know that I have been having a hard time dealing with the changes in my life so I may say things out of anger, frustration, sadness, or just because I am crying out for support.

I am so thankful that I have friends who may not truly understand what I'm going through, but they try.  They are there for me.  I just want to say thank you to Jenn, Donna, Dawn, Kerri, Michelle, Jane, my mom and my best friend of all, Chris.  You have all dealt with me being crabby for the last year and understood why I have been that way.  You have all been an excellent support system.  I don't know what I would do without you all.

On another note...  I was trolling the forums on (the dysautonomia website) today and I found a thread that was just started yesterday by someone asking everyone if they are able to work and if people had to change careers.  It was so interesting what the responses were.  Six out of the fifteen who responded are nurses!  Like I said, interesting.  Someone had brought up that maybe so many of us are nurses because it's so hard to get a diagnosis of dysautonomia, so it takes someone who's in the medical field to push through all of the bullshit. 

After I posted my response, I received a very nice message from one of the nurses on the forum (let's call her Susie, until she wants to make herself known).  She really helped because she made me feel like I'm not alone.  She was a PACU nurse when she started getting sick.  Susie went through the same thing with her coworkers in that she didn't get support from people who she thought were her friends. 

I would like to share something that Susie said to me, because through my emotions and my brain fog, I couldn't say it as well.  "Nursing is a career that really defines the person who is good at it. It wasn't just something that I did, it was who I was." - anonymous (unless she wants to claim it :-)

I felt like I was good at nursing.  It wasn't something that I did, it was who I was.

I was also a mother, a wife, and a runner.  At this time, I am not a nurse.  I am not a runner.  I am still a mother, but not the kind I would like to be.

I wanted to use Susie's quote to help you all understand a little more why I was so bothered by the interaction I had yesterday.

I will leave you with a picture of me at work...

Tuesday, October 26, 2010

Insert explative here

I had removed this post for a couple of weeks after I wrote it.  I am putting it back.  I had removed it because a couple of people, to be unnamed, had told me that it was a very bad idea to have it here.  However, I feel like there is no reason to censor myself.  I am going through enough in my life right now.  The last thing I need to do is to be careful about saying what I feel.  Therefore, here it is again, for your reading pleasure (or maybe not).


To those of you who don't want to listen to me rant, please stop reading now.  To anyone who is not a true friend, loving family member, or random blog reader that I've never met in my life, please stop reading now. If you don't want to read a thousand page post, stop reading now. (I added that last sentence when I finished, because it is pretty long.)

Today has been a very tough day and I really need to vent.  Before I do so, let me start with some history so that the random blog readers can understand what I'm talking about.

A little over a year ago I started to get sick.  It started with headaches.  Those headaches slowly progressed from one a week to 24/7 5 out of 10 pain.  All the while, I was working as an ER RN at a local hospital.  I have been an employee of that hospital for 6 1/2 years now.  (So 5 1/2 at the time I started getting sick.)  I was going to neurologist after neurologist, endocrinologists, ENTs, etc. to find out what was wrong with me.  Once again, still working 3-4 twelve hour shifts as a nurse at a moderately busy ER.

Now, a little more about my job/career.  I had worked in the ER for 2 1/2 years and absolutely loved it.  I finally knew what I wanted to do.  I had originally planned on going back to school to get my master's degree but decided I wouldn't do that (at least for quite a while) because I like being an ER nurse so much.  I also loved all of my coworkers.  I had my differences with a few of them, but nothing we never worked around.  I felt like the ER staff was like my second family.  They had even helped my family through Christmas one year because my husband had lost his job.

When I stopped working because I just couldn't stand to be there anymore because of my headaches, I assumed I would figure out what was wrong and go back to work.  Unfortunately, things got worse.  I started having a lot more symptoms.  After I was diagnosed in March, I had to give up my position.  I, however, thought that I would be back as soon as I got better (which I was told would be 6 months to a year).  In the meantime, I wanted to try to pick up shifts as a unit secretary, or anywhere else they could fit me in.

I really didn't think this was going to be a problem since I was a good nurse, and a good employee.  In the 5+ years I was there, I went to almost every staff meeting, I volunteered for committees, I picked up shifts when they needed me, and most of the time I worked harder than half of the nurses in that hospital.  I have been told by numerous people that I was a good nurse.  I worked my ass off.

Once I got sick, of course I changed.  I had a fucking headache ALL the time.  I had no idea why.  I was also exhausted all the time.  So, can you believe it???  I was fucking cranky.  Wouldn't you be cranky if you had a headache 24/7?  Working as an ER nurse is not an easy job to begin with.  So I'm terribly sorry if I wasn't the most pleasant person to be around for a couple of months.  About one day a week I was almost in tears at work all day because I felt so shitty.

When I left for medical leave, I hardly heard a word from the people I thought were my friends.  As I said before, my symptoms continued to add up, but my "friends" weren't calling to see how I was doing.  They weren't calling to see if they could do something to help.  Nothing.  Not a word.  I didn't expect a lot.  Maybe the occasional email, facebook message, wall post, anything.  All the while, I was having test after test, I was admitted to the hospital, and was trying ruthlessly to get into the Mayo clinic.  In addition to all of that, I felt like crap!  I really needed support.

After my diagnosis and return from Mayo, I went through a pretty bad depression period.  I had lost my job, my career, my ability to be active (as I was a VERY active person), as well as knowing that people who I thought cared about me, really didn't.  If they did, they weren't acting like it.  I have been through a lot in my life, but this was really getting to me.  My whole life revolved around my kids and husband, my job, and running.  I have lost 2 out of 3 of those things.  Including a lot of my independence, since I can't even take care of my kids and my house without someone's help. 

During this time period I tried to start working as a secretary in the ER.  I was told that I could probably do so.  However, I was pulled aside by my former boss and informed that I needed to be careful because I was pretty "crabby" before I left and a lot of people in the ER had problems with me because I was so "crabby".  I was told that he was just giving me a heads up.  He told me that a lot of people had complained to him before I left about how crabby I was.  I think he used the word "crabby" almost ten times during this conversation.

Now tell me, if you were dealing with a life changing event, you hadn't really felt like your friends were there for you, you were already depressed and someone told you that, how would you feel?  Needless to say, I was hurt. 

Soon after that (a couple of weeks later), I had decided to push through it and go ahead and contact human resources about picking up shifts as a secretary.  I was informed that I couldn't (policies and bureaucratic reasons).  I was told this by the very abrupt and not so friendly HR person.  It was not explained very well at the time why I couldn't.  Therefore, I took it somewhat personally.  In hindsight, some of this was because of my mental state at the time.  After both of those things happened, and I had already felt betrayed by my "second family", I made a couple of comments on facebook.  Once again, in hindsight, that was my way of saying "Hey, everyone out there (especially my work "friends"), I'm depressed and can't really deal with anymore rejection.  Please tell me it'll be okay.  Please tell me you understand and you're there fore me."

I am looking back on my facebook to see what I wrote and it's amazing the difference in my status updates from then until now (and prior to then).  It's so obvious, to me at least, that I was depressed.  So here are the comments I made - "Six years of hard work, dedication and friendship and now I'm nothing more than a 'crabby' pain in the ass!"  The next day I posted  - "Robin needs to realize I can't make people care who don't... and move on."

Those are only two of the many comments I made.  Those applied to people at work.  The rest were obvious (okay, obvious to me) that I was depressed, or at the very least, having a very hard time going through what I was going through (and still am).  Examples - "Robin really, really, really wants to be back to myself again.  Have I mentioned how much I hate this?", "Robin really needs something good to happen for a change..", and "Robin is just not feelin' it".

A few weeks ago I was told by one of the two people I actually still consider a friend from the ER to call my old boss and talk to him about working as a secretary.  She thought he was going to let me start doing so.  I called him.  For the second time since I left there, it took him 2 weeks to call me back.  The first time was when he called me back to tell me that I couldn't work as a secretary.  I had commented on someone's facebook status (she was asking if someone could pick up a few hours for her), that I might be able to if he would ever call me back.

Okay, now that you have the extremely long history, here's what happened today.  I was informed, again by an actual friend that still works in the ER, who has been very helpful throughout this whole thing, that there was a job that I could do that would be perfect for me.  It would require almost all sitting and it would only be for 8 hours in a day.  I am currently having to work 12 hour shifts as a monitor tech, which are killing me.  She told me to talk to my old boss before I left today (I was getting off early).  So, even though I felt like crap and I was having one of my "bad days", I decided to go ahead and talk to him.  I am now regretting that decision.

When I first talked to him he said I could pick up the 8 hour shifts.  However, he then led me outside to talk further.  He then proceeded to explain that he had heard through the grapevine about my posts on facebook.   The posts he was referring to are the one's above about "six years of hard work..." and about him not calling me back.  He stood by the other boss's statement about me being crabby and that he was just trying to help.  I explained that the way it was handled was unprofessional.  I also explained that I have been going through a lot of shit and I was very hurt by the things that were said to me and the that the statements on facebook were not all directed at him or the other boss.  I also explained that what I say on facebook is my private life.  I understand that I should have been more professional, but they should have been as well.  In addition to that, I was asking for some understanding in what I'm going through.  I didn't get it.  In the end, I said "if you don't want me to fill those holes..." and he said "I think that it would be better if you didn't right now."

In other words, just like I thought, I am not welcome back down there.  I have been feeling that that was the case since I was told I was "crabby".  That is why it takes 2 weeks to return my phone calls every time I call.  That is why he has not done anything to allow me to work there again.  That is why I had given up on trying to work down there a couple of weeks ago after it took him so long to get back to me (for the second time).  He has made it abundantly clear that he does not like me and does not want me to work there anymore.

The only reason I stayed on at the hospital is so that I could work my way back into being a RN and in the ER.  I thought I had the support of my fellow ER staff.  Obviously I was wrong.

I am so hurt and angered by what happened today.  I am being judged by things I said on facebook almost 6 months ago.  I am being judged on my attitude at work the last couple of months I worked as a nurse, over a year ago, at which time I was having problems with my illness.  I am hurt because I am no longer looked at as a good nurse, solely because of things that have happened outside of work, and because of the way I was for 2 months out of the 6 years I've been there.  Do the first 5 years of hard work and dedication count for nothing?  Evidently so.

I was still hanging on to the thought of going back to being an ER nurse.  Due to my health not improving to the point that I thought it would and now this, I feel like that hope is gone.  Even if I do go back to being an ER nurse someday, I will not be returning to the place I once called "home".  I feel betrayed that my "friends" not only decided not to be there for me during my time of need, but that they also took what I said on facebook, in a time of despair, and used it against me.  All I became was someone they could gossip about, including to the boss.  How low is that?  Here I was, trying to reach out, and what I got in return was a slap in the face.  I was there for those people when they needed someone, as well as I could be, and when I needed someone, they not only turn their backs, but they also make a bad situation into a horrible one.  They made someone who already feels depressed about their situation, even more so.

Now, the whole reason he pulled me aside today was to get on me about things I said on facebook or my blog.  So, why am I posting even more details of my feelings on my blog, you ask?  Well, because I don't give a fuck anymore.  I was making general statements about my feelings on facebook.  (except for the comment about my former boss calling me back, and I don't think there's anything wrong with that statement at all)  So if I'm going to get judged and berated for generalized statements I said on facebook, I might as well just get it all out in the open. 

I am pissed, but most of all, I am hurt.  Very hurt.

Monday, October 25, 2010

Diet, Day 2

Well, I have continued my "detox diet" through today, well until dinner.  I have done fairly well, I think.
Here is what I have eaten since my last post...

Dinner Sunday night: I ended up eating a salmon filet and a baked potato.
Breakfast this morning (Monday):  Strawberries, banana and coffee. 
Lunch today:  Brown rice, and some very yummy zucchini oven chips. Here's the link to the recipe - Zucchini Oven Chips
Afternoon Snack - Protein shake consisting of 1 tbsp peanut butter, about 3/4 cup milk, ice, and 1 scoop of chocolate whey protein powder
Dinner - Pork chop, baked potato, and peaches

Obviously I didn't follow the diet to a T.  I went out to a comedy club with my husband last night, and I had a Smirnoff while we were there.  I couldn't resist.  The peanut butter and milk in my protein shake were not on the official detox diet, neither was the bread crumbs on the zucchini chips or the pork chop.  So I guess you can say it's not really a true "detox diet".  I don't, however, feel that "detoxing" your body is necessary.  My goals of this diet are to eat healthier, include more fresh fruits and vegetables in my diet, and test my body's reaction to eating healthier. 

I have already learned a lot in just the 2 1/2 days that I've been on this diet.  I have learned that my digestive problems may not get a lot better just because of my change in eating habits.  I have continued to have problems with bloating and reflux.  It really surprises me that I have had so many problems with reflux since I have not eaten anything fattening or spicy in any way.  I have also learned that I need protein.  My problems with fatigue and muscle weakness are definitely worse when I haven't had any protein.  After my protein shake today, I felt much better.  I seemed to have a lot more energy (relatively) than I have when I ate only carbohydrates. 

I am going to try to continue eating healthier.  I am working two days this week so I will have to make sure I have enough energy to work a twelve hour shift x2.  Those are extremely tough for me as it is.  Therefore, I am not going to continue to the extreme that I have been doing for the last couple of days.

I probably won't post again for a few days since I am working Tuesday and Thursday.  I am pretty sure I'm not going to have the energy to even type a post until at least Sat.  I hope you all are well, thanks for reading.

Sunday, October 24, 2010

Detox Diet

One of my many symptoms that I experience daily is abdominal bloating, distention, and constipation.  (I promise, this post isn't going to be about poop.  So stick with me here.)  Yesterday I decided to start myself on a "detox diet".

You see, I had gone out to eat on Friday night with my grandparents.  I was starving by the time we got there so everything on the menu looked good.  Being the junk food junkie that I am, I ended up pigging out on "bar food", you know, mozzarella sticks, hamburgers, chips and dip, etc.  Almost all day on Saturday I felt awful.  I was bloated even more than normal.  I decided I needed to make a change.

I researched detox diets online and found some interesting information.  I decided, as hard as it may be, to go on a "gentle" detox diet for a couple of days.  I didn't want to be too strict about it because I think that would be too much of a change for my body to handle.  I hardly eat vegetables and fruit as it is and recently I have been eating what seems like nothing but crap (it's easier and cheaper).  In addition to the fear that it would be a shock to my system, I also didn't think I would be able do the full detox diet.

Basically, the diet consists of primarily fruits and vegetables, rice (brown rice is preferred), beans (which I won't eat),  nuts and seeds (no peanuts or peanut butter), and extra virgin olive oil.  Depending on the source, fish is also allowed in moderation.
Things that are not allowed include sugar, dairy products, eggs, gluten, caffeinated beverages, alcohol, and high-fat foods.

I got almost all of my information from
Here is the link to the basic info about the diet -
The Detox Diet

Foods you can eat

Foods to Avoid

Now, like I said, I have not followed it exactly.  I cannot eat vegetables without butter, Parmesan cheese, or the like.  I will also not give up my morning coffee completely.  I have not, however, had my afternoon caffeinated beverage yesterday or today. 

Here is my diet thus far...
Dinner last night - roasted broccoli, strawberries, and guacamole (This is where I cheated and ate tortilla chips.  I was cutting the avocados and tomatoes and realized I needed something to eat my guacamole with.. oops!) I ate those three things about an hour apart from each other.

Breakfast today - strawberries and bananas, coffee
Snack -1/2 apple
Lunch - 1 cup of brown rice and 2 ears of corn on the cob (yes, with butter, well, margarine)
Snack - The rest of the guacamole and some chips
For Dinner I plan on having more whole wheat rice and a salmon fillet. I haven't decided what vegetable I will have with it.

I have also been drinking lots and lots of water, but I always do that. I haven't had any sugar what-so-ever.  There is even a small package of M&Ms sitting in front of me right now and I am successfully resisting the urge to eat them.
The most important thing that I've been doing is to always eat when I'm hungry.  I am eating very frequently.

So far, I'm tolerating it fairly well.  I have had more of a headache today than normal and my energy level is low.  However, those are both normal symptoms for me so it's hard to tell if it's the diet or my POTS.

I am only planning on doing this for a couple of days. I have to work on Tuesday and I'm going to need all the energy I can get for that.  If it's still going really well tomorrow, and I have the energy to fix my food ahead of time, then I'll try to continue the diet longer.  Otherwise, I will finish it Monday night.  That will be 2 1/2 days of eating healthier than I usually do in a two week period. 

I will let you know how it goes.

Friday, October 15, 2010

No Sleep Till.... Brooklyn

It's 11 o'clock and I should be in bed. Well, I was in bed, but I just laid there with my eyes wide open unable to turn off my head. I have been having that problem a lot lately. Soooooo.... I decided to get out of bed and ramble on about all the crap that's going through my head on my blog.

Fore warning, this post may not be the most entertaining since it is 11pm. My wit went to sleep awhile ago. The rest of me just has yet to follow.

I do, however, have some news to talk about. I went back to the neuromuscular specialist today. As you may remember from my previous posts, I had seen him in August. He wanted me to see a pulmonologist there at KUMed, even though I had already seen one. I saw the pulmonologist at the end of last week. Here's a big surprise, she said my lungs look great. (I already knew that from all of the other tests that I've already had done on my lungs.) I went into the appointment today armed and ready with my list of questions as well as information I have received over the last couple of months from fellow POTSies and Dr. Google. I had planned on discussing having a muscle biopsy with him today. Interestingly enough, he suggested it before I even said anything about it. When he suggested that I have one done, I told him about a doctor in Atlanta that someone recommended. I was told that he's the best and he also does fresh tissue muscle biopsies, which are the best. Dr. Dick, the doctor I saw today, said that he didn't think there would be any need for me to go there. He said, "let me see if one of the neuromuscular specialists can come in and visit with you." I thought, "WHAT?" I thought he WAS a neuromuscular specialist. After all, I got his name off of the muscular dystrophy association website and the KUMed website said that one of things he specializes in is neuromuscular disorders. Hmmm

Anyway... The other doctor came in the room and was nice enough to spend 5-10 minutes talking with me as well as doing a quick exam. She proceeded to tell me (I'm going to really paraphrase here) that there's a 1% chance of me having blah blah blah, yada yada yada, or supercalifragilisticexpialidocious. Okay, in other words, I had never heard of the diseases she was naming off. She said that even if I was diagnosed, there's nothing that can be done anyway. However, she then proceeded to tell me that if I want to rule out a mitochondrial myopathy, which I do, then I would need to go somewhere to have a fresh tissue muscle biopsy. She told me about a place in Dallas, TX that does them and specializes in metabolic muscle diseases.

After the 2nd neurologist, the real neuromuscular specialist, left the room, Dr. Dick told me that he would give me a referral to whichever place I wanted to go for my muscle biopsy. We then discussed some blood work he was ordering. I have been getting petechial hemorrhages recently. I haven't had labs drawn since I was at Mayo last March, so he decided to check a few things out.

Well, it looks like I've reached Brooklyn. If I continue to discuss this with you further, I may fall.... zzzzzzzzz

Wednesday, October 6, 2010


Well, the title pretty much says it all.  Bleh! Other words that could be used are... Yuck. Meh. Blah.

The last few days I have felt awful.  My headache has been bad (worse than normal).  I've been nauseous,  dizzy, my muscles have been hurting worse than normal, and the ringing in my ears has been worse.  I have also had the energy of a slug.  Hmmm... Actually, I bet slugs have a lot of energy.  They would have to in order to get very far since they move so slowly.  Then again, maybe they don't have energy so that's why they move so slow.  Okay, so I've had the energy of a sloth.

Anyway, back to the topic at hand.  Over the last week, my symptoms, especially the fatigue, have increased.  I just don't understand it.  I have increased my water and gatorade intake. Yesterday I did nothing but rest, mostly in bed, thinking that I could build my energy level back up again.  No go!  I still feel awful.

My step-mom did mention this morning that my dad has had a virus that gave him a headache and kept him in bed for a couple of days.  "I don't have any congestion or other signs of a virus, though," I said.  She stated that he didn't either.  Well, I hope she's right.  I hope this is just a virus and will, therefore, go away in a couple of days.

If it's not, I will just have more to talk about when I go back to the neuromuscular doctor on Oct. 15th.  I see the pulmonologist he wanted me to see tomorrow.  I'm sure they won't find anything.  Just like the other pulmonologists I've already seen.

Now, keep in mind I'm not trying to score points.  I'm just whining because I to bitch every now and then or I will explode... and you are an innocent bystander.

Monday, October 4, 2010

Where did everyone go?

This morning I was emptying the dishwasher, refilling the dishwasher, taking out the trash, feeding the dog, etc. when I realized, I really don't have the energy for this.  In addition to the lack of energy, every time I bent over to do something, I had sharp pains in my glutes/lower back (along with the constant pain I have in all of the muscles in my lower extremities).  "So sit down and quit doing those things", you say?  Well, that's what my husband would say.  But that's easier said than done.  Those things need to get done.  The dishes were overflowing in the sink, it's trash day, and the dog was completely out of food and water.

I try.  I try to push through the pain and fatigue.  Most of the time I am successful.  However, as my last weeks' post says, pushing through it just makes me feel worse.  I have been "pushing through it" a lot recently and my need for pain meds has increased as well.  Correlation?  I think so.

You know it's interesting.  We had people coming over and helping us with things on occasion a few months ago.  With 2 girls, 11 and 4 years old, a dog, Chris working full-time (and then some), and me unable to do much because of my illness, we could really use some help.  But it seems to have faded away.

I posted something on my blog previously about how I'm becoming a great liar.  By that, I mean that just because I look like I'm feeling better, doesn't always mean I'm feeling better.  I feel like people are constantly thinking (and sometimes saying), "but you don't look sick."  Well, nothing's changed.  I still have POTS (Dysautonomia).  I do have good days.  The problem is, a "good" day means I can get up off the couch.  It doesn't mean, however, that I can sweep and mop the floors (which hasn't been done in months, ew!), that I can do 3-5 loads of laundry, fix dinner, take my 11 year old to and from soccer practice, and take care of my very stubborn and independent 4 year old by myself.  Unfortunately, that is what needs to be done.  So, if that's what needs to be done, Chris is at work, and I can't even do those things on a "good" day, how does it get done?  That's a great question!  It doesn't!

It was really helpful when people were bringing us dinner from time to time or coming over to help with laundry or cleaning or whatever else needs to be done.  Unfortunately, that hasn't happened in quite a while now.

Maybe I need to quit faking it.  Maybe I need to complain more.  Maybe I need to quit doing things that I really don't have the energy to do, or that I know will make me feel completely awful later if I do them.

If I quit faking it and start complaining more again then people are going to get sick of hearing it.  Hell, I get sick of hearing it and it's coming out of my mouth.  It makes me feel better to fake it.  I don't want to act sick all the time.  I don't want my whole life revolved around my illness.  Which means, I don't want to talk about it.  BUT, that doesn't mean it's not still there.  I still have to live with it.

If I quit doing things that I really don't have the energy to do and things that will make me feel awful, then they won't get done.  Even my husband has slowed down on doing things around the house.

Basically, people are expecting so much more out of me than what I have to give.  Or maybe everyone is just too "busy". (Look!  It's my favorite word!)

So what am I supposed to do?  Do the things that need to get done and make myself feel awful?  Or leave them for someone else; someone else who isn't there?

On a side note....
I logged on to my blog in order to write this post this morning when I read another blog that I frequent.  I wanted to share it with my readers as well because I COMPLETELY understand where she's coming from.  Please pay special attention to her list of things that are exhausting to her. (She also has POTS/dysautonomia)

Living with Bob - Fatigue

Also, please take the time to read "The Spoon Theory".  The link is on the right of my page as well as below.

The Spoon Theory

Friday, October 1, 2010

A New Theory

So, earlier this week I thought "I'm going to try something different."

You see, it seems to always be the same routine for me.  Good day, okay day, bad day, good day, okay day... Well, you get the idea.  Even my 4 year-old can figure out that pattern.  Usually what happens is that I have a good day, usually on Mondays because my husband has been around to help with stuff around the house and make me sit more often over the weekends.  When I'm having a good day I take full advantage of it; as in doing as many chores (laundry, picking up, running errands, etc.) as my body will let me.  I will still sit and rest in between knowing full well that I don't want to over do it.  Then, the next day, I feel pretty crappy.  And the day after that, even crappier (is that a word?).  So I usually listen to my body and sit/lay on the couch for those days.

This week, I wanted to try something different.  Monday was an excellent day.  I felt like a had a ton of energy (compared to most of my days recently, not compared to the way I was a year ago).  I have a lot of stuff to get done right now because I am putting all of my daughters' old clothes and baby items in a consignment sale that I have to get ready.  Therefore, on Tuesday, even though I had a whole lot less energy and my legs/hips were starting to feel bad, I pushed myself to do stuff.  On Wednesday, I felt even worse, and was in a decent amount of pain.  However, I went ahead and continued to work through it.

My theory was this...  Maybe I get fatigued and sore after I have a busy day.  Then I sit/lay all day the next day which keeps my muscles tight, and therefore, painful.  I also know that exercise gives you energy.  So I thought that maybe I was just feeling more fatigued because I was just sitting around, instead of pushing through it, like I used to do when I was a runner. So, to solve this problem, I just need to push through the pain in my lower extremities and the fatigue.

Those of you with POTS, or a similar chronic condition, probably know what the results of my mini-study were.  But thank you for not ruining it for all those healthy people out there reading this by telling them the results ahead of time.

Guess what?!?!  It didn't work.  Today is Friday and I have tried to push through my fatigue and pain almost all week.  However, the amount I was able to do decreased with each day and my fatigue and pain increased each day.  Yesterday I barely did anything, but I still didn't sit/lay ALL day.  Now, today, I feel like my legs have a 20lb. weight on each and I'm already ready for pain meds (I usually wait until evening to take them because I don't want to take them very often).  I had to go downstairs to get something this morning and I had to stop and rest halfway up the stairs when I came back up. 

It's things like this that really make me feel like POTS is not the only thing going on.  But that's a whole other topic that I will have to address some other time.

Thursday, September 30, 2010

Too Busy? Or just a bad case of mixed priorities?


1.  actively and attentively engaged in work or a pastime: busy with her work.
2.  not at leisure; otherwise engaged: He couldn't see any visitors because he was busy.
3.  full of or characterized by activity: a busy life.
("borrowed" from

“The really idle man get nowhere. The perpetually busy man does not get much farther.” 

- Heneage Ogilivie Sr.

Busy.  I hate that word.  I am so very tired of hearing that word.  Everyone is SO busy now-a-days.  Or is that just an excuse?  


Yes, everyone's busy.  However, you are only as busy as you want to be.  Everyone has the choice to slow down.  Yes, I know you have twenty kids.  All of which need help with their homework and wiping their butts.  I know you "have" to go have drinks with friends.  I know you have a charity event to go to, a football game, a basketball game, clean your house, do laundry, take your kids all over town, go shopping, etc.  Yes, you work "a lot".  You have SO much to do, and SO little time.

It's called priorities.  Everyone say it with me pri-or-i-ties.  You don't have to do any of those things, other than work, obviously.  Even that can be adjusted.  You don't have to work 120 hours a week (or whatever godly number of hours you work).  You don't have to take your kids all over Timbuktu.  You don't have to go to that football/soccer/basketball game.  You don't have to go have drinks with friends (okay, maybe that last one you do.)  

What I just absolutely can't stand is when people constantly say they are so busy.  I'm sorry, I can't take you to the doctor, grandma, I'm too busy.  I'm sorry, I haven't talked to you in weeks, brother; I'm just so busy.  I'm sorry, I haven't called to see how you're doing; I've been _______ (fill in the blank with 20 things you've been doing).  

Everyone can make time for things.  It's what you choose to make time for that makes you so "busy."  So please don't tell me you're too busy to come help me with things, call me to see how I'm doing, etc.  Next time we talk, why don't you just be honest with yourself.  You're not too busy, you're too busy for me. 

You know.  I'm okay with that.  What I'm not okay with is people who aren't honest about it.  How about, "I'm sorry I don't have time to help with that this time, but I'd love to help you with something next week."  Or,  "I can't come over and visit with you tonight, thanks for the invite, but how about next Tuesday?"  Or, "I really can't talk right now, but I'd be happy to call you back later."  Notice that not a single one of those sentences has the word "busy" in it.  Now don't think you can replace the word busy with "I'm helping my kids with homework, cleaning the house, washing my hair, doing laundry, picking my nose, working, trying to figure out the meaning of life, and fixing dinner; Can I call you back later?"  Now, if you really are too busy to help with something next week, visit me next Tuesday, or call me back later, then you need to take the time to figure out why you are too busy for those things.  Is it REALLY because you're "too busy" or is it because you have other things to do that are more important???



Thursday, September 23, 2010

What A Difference A Day Makes

 Just like the title says... What a difference a day makes.

Last night I actually got enough sleep for a change.  The two nights prior to that I had slept hardly at all; either because of my brain going a million miles an hour or because storms were keeping my 4 year old daughter and my 4 year old dog awake.  Why can't it storm during the day???

Today, Chris, my husband, called me to let me know that he was re-hired at the company he worked for through the temp agency prior to this last job that only lasted 3 weeks (jerks!).  This time, however, he will be working directly for the company and not for the temp agency.  They are also going to start him with benefits when they have open enrollment sometime in the next month, instead of making him wait the normal 90 days.  As you can imagine, we are both thrilled.

I also received a phone called from my insurance company this morning.  My doctor's office finally faxed the letter of medical necessity to them.  They were calling to let me know that I have been pre-certified for 6 months worth of out-patient care at KUMed.  That includes any doctors that I may see, and tests I may have done within the next  6 months.  It will all be paid at the in-network rate instead of out of network, which is what KUMed is.  Once again, excellent news.

Now you're probably thinking I must be jumping up and down with joy.  Well, as much as I don't want to be a pessimist, it's very difficult right now.  I am having a MUCH better day today and I have more hope than I did yesterday.  Of course, that's not saying much.  This is just one small step up.  Chris will still be keeping his eyes open for other opportunities, as this job does not pay much at all.  Considering the fact that we need two paychecks in order to pay all of our bills, and I usually make more than he does, we have a long way to go still.  (Chris is going to kill me for announcing that.  Sorry, honey.)  When it comes to the pre-certification, that is also just a small step.  I still have to actually get in and see the doctors.  I also have to convince them to run further tests than what I already had done at Mayo.

So, while these are steps in the right direction, we are still climbing a 14er and only at about 3,000 feet.

Wednesday, September 22, 2010

This rant is rated R for vulgar language and situations

Fuck the world! Fuck this life!

I am beginning to think I need to give up trying to have a "normal" life. A life like we had a year ago.

Last Monday, September 20th, my birthday of all days, my husband lost his new job after being there for only three weeks. He has been unemployed for over a year. He went back to school to get multiple IT certifications last fall but graduated in the end of Jan. It took him until 3 weeks ago to finally get a job. That doesn't count the temp position he had for a month. That place even kept stringing him along telling him they were going to hire him on permanently, in which they obviously didn't do.

So over the last few weeks things were actually starting to look up for us a bit. He was going to get insurance which would save us from having to pay $1400/month for Cobra and he was getting a somewhat decent paycheck. It was not going to solve all of our problems, but it was a huge fucking start.

This last Monday, the company he was working for decided he was not experienced enough to work there. He did, however, make it more than abundantly clear at his interview that he had just started out in the IT field and that he didn't have much, if any, experience. He also informed him that it had been 6 months since he was done with school and things would have to slowly come back to him. Keep in mind, they only gave him 3 fucking weeks to prove himself.

UGH!!! I really don't think I can take this shit much longer. When are things ever going to get better? Everyone wants to comfort me by saying "things will get better", "it could be worse", "so-and-so has this and that going on", etc. Okay, I'm sick of hearing that crap. I know it could be worse. It always can. I can think of a million awful things that could happen and then think of a million worse things that can happen. Things will get better??? Really? When? Because so far we've been dealing with unemployment issues and my health problems for over a year now. I don't want to hear that it will get better because until it starts to get better, and stays that way for a little while, I don't care. I want it better now! I don't want to be rich. I don't need to be able to run a god damn marathon again. I just want to be able to keep a roof over our head, feed our children, and go to work everyday. I just want my husband to be able to go to work everyday.

I thought I had a hard time dealing with things a few months ago. At that time I went through a depression that I haven't seen since I was a teenager. Well, as of right now, I'm not depressed. I'm fucking pissed!!!

In addition to the problem of my husband's job situation, I have been feeling worse for the last week. It's because of stress, you say? Nope. I started feeling worse 4-5 days before my husband lost his job. My muscle pain in my hips/glutes is getting almost unbearable at times. My muscle fatigue, primarily in my lower extremities, has also been worse over the last week.

So I am the type of person who believes that instead of just bitching about something, do something about it. Well, I'm freaking trying. I am doing everything I know to do.

I had an appointment with the neuromuscular doc at KUMed on Sept 27th, but they called and said they had to reschedule for Oct. 15th. Lovely. Two more weeks to wait. So, in the meantime, I am getting precertification from my insurance so they will pay the in-network amount since KUMed is out of network. I would like to be able to call KUMed to see if there have been any cancellations so I can get in before Oct. 15th. However, I need precertification first. Well, what is the hold up on that, you ask? My doctor's office (my pcp) needs to send my insurance company a letter of medical necessity. I asked them to do so about a week ago, and they still haven't done it. I called yesterday and today to bug her about getting it done.

SO... In regard to me making money. Well, I have found that working even 6 hrs makes me feel completely awful. I am, however, going to try to still work one 12 hour shift a week in order to help with our money situation, even if it does make me feel like crap for two days. (All that's available is 12 hour shifts since I work at a hospital) I decided, since I have been feeling worse over the last week that I am going to try to apply for social security disability (SSDI). I was going to wait until after I talked with the neuromuscular doc further and possibly more tests to see if something else was going on that I can put on the application. I have heard from multiple people with "just POTS" that have a very hard time getting disability. I went ahead and called my pcp to make an appointment to talk to her about disability. Guess what!!! She doesn't do that stuff! Of course not. She sends her patients to an orthopedic doc. My problems have absolutely nothing to do with anything orthopedic. Plus, he wouldn't know me from Adam, or Eve, or Mary, or Jane. (Mmmm... maryjane) Sorry, got distracted. Now what was I saying?

Yesterday, the first full day after my husband lost his job, I decided to try to get help with our bills, etc. This was funny. (not really, but I have to laugh or I'll explode) In order to get assistance with our mortgage or our utilities, we have to be near foreclosure and/or close to having our utilities shut-off. What the fuck!?!? So we get penalized for continuing to pay our damn bills on time even during a time of financial hardship?!

It's going to take a whole hell of a lot to keep me from going crazy with everything that we have going on.

Wednesday, September 1, 2010


Over the past couple of months quite a few people have noticed, and pointed out, that I have been more active, that I look better, and that I'm doing better in general. I, myself, have been responding with a resounding "good" or "getting better" when people ask how I'm doing. Unfortunately, you can't believe everything you see or hear.

Don't get me wrong, I am "getting better", but I'm hardly ever "good". However, it's not a drastic change by all means. The big change that I have noticed, and I think everyone else is noticing, is my attitude. I was having a VERY hard time dealing with my illness and all of the changes in my life it caused. I have, over time, learned how to better deal with being at home everyday. I have learned who my friends are, and who aren't, and not to expect anything from anyone. I have learned how to deal with my chronic pain, or I've just gotten more used to it. I've also learned what I can and cannot do, what makes me feel worse, and what makes me feel better. (Unfortunately, one of the lessons I've learned is that drinking a couple of glasses of wine used to make me feel better, now it makes me feel worse.)

One of biggest lessons I've learned is how to lie. I know. That's not a great thing to start doing. But you all have to admit... Do you really want to hear me complain about how crappy I'm feeling all the time? Wow, I could hear the screaming "NO" from here! I, personally, wouldn't want to hear one of my friends or family members do nothing but complain. I even get sick of hearing myself complain. So, I lie.

There is one problem with lying about how I feel and responding with "good" or "great" when people ask how I'm doing. People start thinking I'm doing good or great. Not that that's entirely a bad thing. However, it's not always a good thing either. The problem I've noticed is that people seem to expect a lot more out of me now. If I'm doing better, why am I not going back to work full-time? If I'm doing better, why can't I run errands all morning? If I'm doing better, why can't I have sex every night? Okay, no one actually expects the last one out of me (except for me of course).

I have told everyone what the doctors told me about POTS; that it should slowly get better over time. Well, the pressure's on. I should be getting better, right? As I said earlier, I am getting a little better, but the key word is "little". If we're talking about physical manifestations of my illness (not that big bad depression I kicked out), some have gotten better and some have gotten worse. My fatigue is a little better, but I still get tired really easily. My dizziness is better most days, I think because of the meds, but I still get dizzy when I stand up if I haven't had enough water or salt that day. The decrease in the severity of my headaches has been the most drastic change. I am usually about a 1-2 daily instead of the 5-8 I was before. The problem is that as those things are getting better, a couple of symptoms haven't changed or have gotten worse at times. My muscle weakness/fatigue with very little activity has not changed and the pain in my muscles, primarily in and around my hips, has gotten worse.

To put all of this in real world terms... I went shopping this morning. I was there for a little over an hour. By the time I was standing in line to pay for my stuff, my legs were so fatigued they were shaking when I was trying to stand up from a squatting position. The muscles in my upper thighs, hips and glutes are in a lot of pain now (which they always are if I do much activity at all). I am so fatigued that I haven't had the energy to do anything but lay on the couch.

So please understand that I appreciate everyone asking me how I'm doing, but if I respond with a resounding "good", that means that either I don't want to talk about it, or I don't think you really want to hear how I'm doing. It usually doesn't mean I'm actually doing "good". So please take it with a grain of salt.

And with that... I have to go lay down now as all this typing has made me tired.

Friday, August 6, 2010

What's new

Wow. I knew it had been awhile since I had posted on my blog, but I didn't realize it had been over a month. I'm well overdue!

I really want to update everyone on what's been going on with me, my life, and my illness. So this post is more for family and friends who may need an update. Sorry to those of you out there on the interweb. This may be a little boring for you.

I had stated in one of my previous posts that I am returning to Mayo. Well, the plans have changed. I was originally going so that I could see a neuromuscular specialist about my continued muscle pain and fatigue. However... I called Mayo a couple of weeks before I was due to go so that I could find out which neuromuscular doc I was seeing for insurance purposes. They informed me that I am not seeing a neuromuscular specialist, I am seeing the neurologist who specializes in autonomic disorders that I saw the first time I was up there. They informed me that in order for me to see a neuromuscular specialist I had to be referred by my original neurologist and she didn't feel that it was necessary.

I ended up speaking with my original neurologist on the phone (the autonomic disorders specialist). She stated that she thinks my muscle fatigue is still from my POTS and that she thinks my muscle pain is probably from Fibromyalgia and my fatigue is from Chronic Fatigue Syndrome (CFS). Ugh! The dreaded "F" word! If you have worked with me, any many of you who haven't, you know how I feel about the diagnosis of Fibromyalgia and CFS. For those of you who don't know, let me explain. In my opinion, Fibromyalgia and CFS are diagnoses given to people who have pain in more than one area or continued fatigue in which the doctors cannot find a specific reason for. OR, they are tired of looking for the specific reason. Those diagnoses are a catch-all for something that can't find the cause for. It's a cop-out for the docs. Now, if I have offended anyone with those diagnoses, I apologize. I meant to offend the doctors who diagnosis these "disorders".

Now, with that being said. I have canceled my appointment for Mayo. I had previously made an appointment with a neuromuscular specialist at KUMed for Sept. 24th. I called the other day to see if there had been any cancellations and sure enough, there had. I had my appointment yesterday. At this time, he wants me to see a pulmonolist (lung doc) at KU and then follow back up with him. I will update you all on that later.

Over the past month, while I was waiting for my appt. at Mayo, I have been doing some of my own research. I have also talked with multiple people with POTS from around the country via a great website Through my research, and talking with other people, I have learned about mitochondrial disease. This is something that I wanted to discuss with the neuromuscular doctors. I will discuss this further after I find out more.

Over the last month or so I have started to feel a little better. My dizziness with position change has decreased and I have been able to tolerate a little more activity (emphasis on little). However, the biggest change is in my mood. I am dealing with the changes in my life a lot better now. Don't get me wrong, I still have my days (don't we all?), but overall I am happier. Now, am I feeling physically better because of the meds, time, or my change in mood? That's a good question. Maybe my mood is better because I'm physically feeling a little better. Hmm... Chicken or the egg? Who knows?

I have, however, continued to have problems with muscle pain around my hips, upper thighs, and shoulders. I also have to be careful that I do not increase my activity too much. If I do too much in a day, I am generally down for the count for a day or two afterward. I have been trying to exercise on the stationary bike from time to time like my neurologist told me to. I am only able to do 8 minutes at this point. After that, my legs generally feel really weak and my hips hurt the next day. While some of my symptoms seem be getting a little better, the muscle pain and fatigue have not changed.

Chris is working now. He is working through a staffing agency for a company called IST. However, IST has stated that they are going to hire him as one of their employees. They are supposedly working out the buyout with the staffing agency. They have to debate how much Chris is worth, I guess. Our financial stability, however, is a slow process. He is still not making near what he was prior to going to back to school for his IT career. The job search is going to be a continuous process regardless of his employment status. We also have to consider the loss of my full-time income. All of this happened at a bad time with the economy being so f'n crappy!

The girls are doing wonderful. Kylie just returned from camp. She had a blast! Danica is doing great as well.

Well, you are officially updated. I will try to post more often. Sometimes I just don't feel like typing.