Patience Is A Virtue

Ever since I was a little kid, I never had any patience.  I remember my mom telling me that when I grew up, I'd become more patient.  I honestly don't think that ever happened for me though  lol.  We've all always heard that "patience is a virtue" and I'm sure we've all heard the saying "good things come to those who wait".  While both of those sayings may be true, I really believe that "the best things come to those who do".  I think a person needs to combine a little patience, with a little proactiveness to achieve what they're trying to do. 

Since February, I've wanted to break into public speaking.  I've wanted to present a seminar on living with chronic pain, from a patient's point of view.  I knew that making this a new career would take a little time, so I needed to be patient while waiting on that first big break.  I also knew, that I had to keep trying to get that first big break myself, or it'd never come. 

Avenues of social media is my new best friend.  I've blogged about wanting to present seminars, and I've tweeted about it.  I even have a face bookpage for the blog that I've shared my desires on, as well as my own personal facebook page.  If I didn't get the message out there that I wanted to educate and advocate for those living with a chronic pain and/or invisible illness, then no one would know that's what I want to do.  I wasn't going to get an email out of the blue, dropping a gig straight into my lap. 

I vowed not only to myself, but to all of you as well, that I'd never give up on trying to educate and advocate for all of us.  My hope is to bring understanding about our conditions to others, so that more people stand up and advocate for more research.  I also want to reach out to those of us, that are living with an illness, so that no one feels alone.  I want to bring real statistics into play.  I want to give those of us that need them, resources to help us cope with both the physical and mental problems we face on a day to day basis.

I've remained persistant, and plowed forward with determination.  Do you know what?  It's paid off!  I finally have my first big break.  I have a large church that approved allowing me to use their sanctuary to hold a chronic pain seminar.  After I have one or two under my belt, it'll make it so much easier for me to get other gigs.  Advertising for the seminar is my next obstacle, but I'll figure it out.  The old saying "it takes money to make money" is unfortunately very true, but then again so is the saying "where there's a will, there's a way". 

There are ways to advertise rather inexpensively, and I'll be exploring those options over the next few days.  Whatever it is that you do, whether it be pray, send good thoughts, send positive vibes, please do.  I'm praying to find several cheap ways to really get the advertisement out there for the seminar, and I'm praying that I have a good turn out for it.  I more then welcome your good thoughts and/or prayers for the same thing!  I've felt all along that I became sick for a reason, and that reason is to advocate.  My persistance, determination, and tenacity is finally going to be rewarded.  I vowed I'd never stop trying, and I'm proud to say that even though it's been a long time coming, the time is finally here!  Persistance and patience finally has paid off!

All The Small Things

Ok, I realize that the song doesn't have the meaning I'm talking about in this post, but I love it anyway and the title fits LOL.  Living with chronic pain I'm reminded almost daily of all the small things that I can't do now.  Or that I can't do without causing my body pain and sometimes setting myself back a couple days in a row afterwards.  The heat and humidity?  It leaves me completely wiped out, plus affects my asthma/COPD.  I walk around sounding a bit like Darth Vader.  Walking around the block?  Somedays I just can't.  I couldn't make it across the street.  When I do, I'm left completely exhausted for the rest of the day at least.  Sometimes the following day or two too.  Setting up a yard sale?  Yeah, I couldn't.  I helped with a few things, but overall my kids set it up.  The little bit I did do, still  has me completely wiped out.

Doing something as simple as laundry I sometimes can't do.  I have to have my daughter switch the clothes from the washer to the dryer, then take them out of the dryer for me.  My back pain won't allow me to bend and stoop to do it.  Sometimes it even hurts my arms, from reaching and outstretching them.  Sometimes bending to this, or other times leaves me dizzy. 

A few minutes ago I walked out the back door to turn the hose on.  We're in the process of filling our above ground pool.  I turned the hose on, then came back in here to sit down.  I'm completely exhausted now.  My head is even hurting since doing it.  How ridiculous is that?

My old rheumatologist and the new one both asked me if I have chest pain.  I told them both no.  Starting this past Wednesday though, I've had bad chest pain several times a day.  I guess I get to add that to my symptoms when I have my next appointment. 

About a week after my last appointment in February, I started experiencing Fibromyalgia Numbness in my left hand and fingers.  It was so bad for awhile, that I couldn't hardly type.  It was the weirdest sensation to have, and to have it just stay like that.  Eventually, it started getting better and was almost completely gone.  Now, it's starting to come back again. 

Some days, It hurts my arms, hands and fingers to even type.  I couldn't do a blog post, without causing myself severe pain.  Almost daily my arms ache and hurt too much, that even reaching out to take a plate out of the cabinet hurts them.  To make supper, I have to take a pain pill about 30 minutes prior, then I'm still usually still in such pain that I'm blinking back tears before I'm done.  That's the only meal I cook.  Everyone has to fend for themselves for breakfast and lunch.  Running a sweeper?  Forget it. I'd be down the rest of that day, and usually the next too.  Even standing up and sitting down causes me a lot of pain.  My poor knees snap and crack and I have shooting pain. Shaving my legs?  I usually can't without help.  Now the I'm getting a divorce I don't have a choice.  It took me over 30 minutes and completely wiped me out.  It also gave me charley horse type cramps in my stomache, sides and back.

There's more.  Many  more simple things  I can't do now, or do with difficulty and hurting myself.  A few weeks ago, when I went grocery shopping I was in such pain and physically exhausted afterwards, that on the way home I started crying.  I couldn't help it.  The tears were just silently running down my face.  That particular incident really hit me hard.  It showed me how difficult living my life without my husband was going to be.  We always went grocery shopping together and if I needed something that was down low or up high he got it for me and put it in the cart.  He'd put everything on the register belt to be scanned, then put all the bags back into the cart.  He'd load it from the cart into the car, then bring it inside the house for my daughter to put away. 

If I can't even do the small things in life, how am I supposed to live?  How am I supposed to do this thing called "Life" being single?  What will I do when all of my kids are grown and out of the house?  My youngest is 16 years old.  She'll be a senior next year, then off to college.  It may sound dumb, but I actually feel panicked when I sit and think about it.  -Yep, that dang anxiety that accompanies fibromyalgia.  Sitting here writting this out, has tears stinging my eyes that I keep blinking back. 

People who don't live with a chronic pain and fatigue condition will never understand these things.  Reading it, may not even sound realistic to them.  I could see someone reading this post and saying to themselves, "That's absurd. This lady is just lazy.".  I assure anyone who may be reading this, it's all very real.  Do I like it?  Heck no.  I hate it!  I hate fibromyalgia.  I hate COPD.  I hate arthritis. I hate IBS.  I hate all of these, among other illnesses and diseases.  I'm not sure how to live my life.  I'd like to think that I could figure out ways to still live a fullfilling life, but I'm not sure it's possible.  I'm not sure it'll ever be possible in my lifetime.  My hope, my prayer though, is that with enough awareness, education, and advocacy that maybe more money will be dedicated to research so that by the time my daughter is my age, she may not have to live her life in the mannor I'm living mine.  She has PCOS, and after I was diagnosed with fibromyalgia I'm pretty sure she has it too.  She'd been through all kinds of tests, including expensive tests that had to be sent away to see if she had any type of muscles disease to cause her pain in her muscles.  My rheumy won't see children though.  I need to find one that does and have her tested.  Please, advocate for a cure.  Spread awareness.  Educate those who have misconceptions about our illnesses.  Try to get them to understand.

My 16yr Old Daughter, Fight's Like A Girl

I haven't really talked about any of my children on this blog yet, so I'm going to take today to introduce you to my youngest child, Courtney.  Courtney is 16 years old, and at the age of 15yrs 1mo old, she was diagnosed with PCOS.  PCOS (Poly Cystic Overy Syndrome) is another one of our wonderful invisible illness'.  I do believe that Courtney also suffers from Fibromyalgia, and I'm getting ready to start my research of trying to find a good rheumatologist that treats children.

Shortly before Courtney (who prefer's to be called Court) turned 15, she started getting sick.  She started having horrible stomach pain.  She was tired and lethargic.  Her muscles felt weak and ached, and she'd get muscle twitches and charlie horses.  She had constant headaches, and sometimes felt dizzy.  She was nauseous a lot of the time, and lost her appetite.  She had (has) trouble going to sleep at night, and became depressed. 

Our adventure led us to the family doctor, who ran test after test.  He seriously ran almost every test imaginable.  Even ones where she had to drink contast that made her throw up.  She had everything from blood tests, to urine tests, to imaging and ultra sounds.  The final conclusion after months of testing, was that she has PCOS.  The ultra sound showing several pearl-like strands of cysts on both ovaries was the final piece of the puzzle to her diagnoses.  Like I said above, since I've been diagnosed with Fibromyalgia and learned about this beast, I fully believe her to also have Fibromyalgia in addition to the PCOS.  She also was diagnosed as having depression.  -Yet another invisible illness to deal with.

I was searching for a photo of Court, that I had taken of her in the hospital one time after diagnoses, but of course I'm not seeing it in my hundreds of photos that I have on my computer.  One of her cysts became very large, and ruptured.  She was in so much pain that she was laying curled up on the bathroom floor, crying and asking me if she was going to die.  She was white as a sheet. Talk about breaking a mom's heart.  After she'd been at the hospital for awhile, all of the fluid from the ruptured cyst moved up into her chest cavity, causing excruitiating pain in her chest.  The poor kid was on I.V. morphine for about 4 hours. 

The people who have heard of PCOS without being afflicted with this condition themselves, say "Oh yeah, I've heard of that.  It just causes some cysts on the ovaries.".  That statement can be infuriating to a person who suffers with PCOS.  It's so much more then that.  In fact, a lot of people who have PCOS doesn't even have ovarian cysts.  The name can be so misleading. There's a gauntlet of symptoms and a person may suffer from one symptom, to many or all of the symptoms.  Unfortunately for Courtney, she suffers from a massive list of them.

Everyone has heard of diabetes, right?  Everyone has heard of heart disease, for sure.  Most everyone has heard of endrometrial cancer.  Everyone has heard of depression. So why then, hasn't everyone heard of PCOS?  PCOS can cause any one of these above conditions.  PCOS is the number one leading cause of female infertility in the U.S.  It can cause cysts, but as you can see, it also is a whole lot more then that.  Babies born to women with PCOS are even at a higher risk of NICU stays, then babies born to mothers without PCOS. 

My daughter, who should be enjoying the best years of her life in high school right now, is now homeschooled.  She takes her classes through our school district, in an online format.  She's a beautiful singer, who was part of our high school show choir.  Unfortunately, our director didn't know a thing about PCOS and apparantely wasn't willing to try to learn anything about it.  Therefore, if Court wasn't quite as peppy as she should be at a practice, or if she was having a really bad day and just couldn't make it to practice that night, she was yelled at infront of the whole group for it.  Courtney finally had enough, and had to give up her one real joy at the end of the 1st semester this year.  Here's a photo of her doing one of her solo's last year:

She loved the dinner theatre they held, and was so excited to get out there and perform for the crowd.  Here she is before she took the stage, along with my parents:

PCOS may have put a few road blocks in Courtney's path, but it hasn't stolen her spirit or personality.  She's still the same beautiful, goofy teen-aged girl that loves spending time with her friends. 

My oldest son, Cody, is an amateur MMA fighter, with a 7-state ranking of 3rd out of all of seven states. September is the national awareness month for PCOS, and we're hoping that with Cody's help we'll be able to get a huge all female fight scheduled, with the name of the fight being called "Fight Like A Girl", to raise awareness of PCOS and to raise funds for research.  Here's Cody at one of his fights:

Cody is the one on top, winning

  See, research is really needed for PCOS.  There isn't a cure.  There isn't even a treatment plan really.  Some doctor's throw some birth control pills at you to try and help with the symptoms.  Some doctor's throw metformin pills at you to try and help with the symptoms.  Depression meds may be prescribed.  That's about it.  If money can be raised for depression, heart disease, diabetes and cancer then why can't it be raised for PCOS research?  Again, PCOS can cause any or all of these complications.  I bought a new teal colored shirt a few weeks ago, and today I'm wearing teal for my daughter.  I'll leave you with a very poor quality video of Courtney and the show choir group doing the opening song of the dinner theatre, in case you'd like to watch some real life "Glee" today. They're doing the song "Don't Stop Believing".  That's a motto that Court and I both live by.  Please be patient.  The lights finally come on at the :55 mark, and the camera zooms in on Court around the 1:07 mark.