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