Wednesday, May 16, 2012

.i can't make you believe me.

It truly breaks my heart to know that some members of my family think there's nothing wrong with me other than being lazy.  "You just need to get out more"; "You need to exercise more"; "Well maybe if you didn't sleep all the time......"  They just don't get it.

I wake up at 5:30 during the week.  I leave for my 40 minute drive to work at 7:00.  After 7.5 hours, I make the 40 minute drive back home.  By that time I've been on the go for over 12 hours.  Then I have to take care of my mother.  She's unable to drive so I go by a couple nights a week to take her to the library; the grocery store; wherever else she needs to go.  On Saturday, I take her to run her errands again.  As her only child in the area, it falls on my shoulders.  My adult children and my husband try to help out, but she always has complaints.  "They're always in a hurry"; "I don't want to impose on them"; "They have too many other things to do."  Then Sunday is church.  And heaven forbid (no pun intended) if I miss church.  My mother is convinced if I miss a Sunday I'm going to hell.  Ugh!!

They just don't get it.  My body needs at least 12 hours of sleep a day.  Anything less is useless.  More is often appreciated but rarely seen.  Because of some of the medications I take coupled with the fact that I only have half a bladder, I'm often up 4 times a night to go to the bathroom.  So no, I rarely see the needed 12 hours sleep a night my body needs.

But my family rarely understands when I do have a few free hours that I just don't have the energy to do anything.  Do I WANT to go out and about and do things?  Absolutely!  A hike in the forest?  Out to dinner and a movie?  Visiting my daughter?  I would love to do things like that.  I just wish they understood how hard it is for me. 

Sometimes they do.  Some days they understand.  But more often than not I see that look in their eyes.  I hear that sigh in their voice.  The exasperation.  And I know what they're thinking........

"You could if you wanted to."

Monday, May 7, 2012

.learning how not to be sick.

Not physically.  Physically you're either sick and having a bad day or you're not.  But emotionally.  Perhaps it's just me.  I don't know.  I don't really know a lot of people who deal with long term chronic illnesses like I do.

Herein lies the problem.  Over the past couple months my dr has made some changes in my medicine that have resulted in my feeling better.  Physically.  I'm still not where I would like to be.  But I can certainly tell a difference from where I was at the beginning of the year.  I'm in less pain; my thyroid is leveling out and I'm not feeling overly exhausted 24/7.  I can tell a difference in my energy level.

But emotionally, I'm struggling.  I've been so sick for so long.....I don't know how not to be sick.  I don't know how to wake up, feeling great and go out an enjoy life.  I wake up feeling great and I panic.  What does this mean?  What am I going to have to do?  What are people going to expect from me?  For so long so little has been required of me because of my health.  So what happens when I'm feeling better? 

It sounds so stupid, I know.  I should be thrilled to wake up and feel strong and healthy.  Instead it scares the hell out of me!  On the one hand it's exciting to think "Wow, I can actually live life today!"  I think about the things that I could do with my family.  Go to the Farmers Market; go out to lunch; go to a movie.  And then I panic. 

The thought of leaving the comfort of my home; of my scares me to death!  I'm safe here; everything is ok.  If I go out in the real world what will happen? 

I feel like a person with agoraphobia.  I just want to stay in the safe confines of my room.  Is it possible I'm afraid to get better?  Am I afraid to live life?  In my mind, there's so much I want to do.  I want to go hiking with my family; I want to have cook outs; family game night.  I want to go visit my daughter and son-in-law; I want to go visit my son at the barn.  I want to go for walks in the evening with my husband. 

But I am afraid.  I know I need help to get beyond on this.  I know I need to see someone.  Because the bottom line is I can't, I refuse to go from being so sick physically for so long to finally feeling better only to be chained down by emotional fear. 

So my first appointment with my dr is Wednesday and hopefully that will be the first step to living a fully functional, normal life.

I'm ready!

Monday, April 23, 2012

.when we sabatoge ourselves.

As my previous post tells, I had a great week last week.  I actually worked the entire week and for me, that is a victory.  So it's quite depressing to find myself at home this Monday morning.  However, it's no ones fault but my own.

My husband has been in California visiting his brother and came home last night.  We were both tired and curled up in the bed to watch a movie and just enjoy being back together.  Because I almost always sleep on a heating pad, I also almost always sleep with the window beside my bed cracked open because the heating pad makes me hot.  So when we curled up last night I opened the window. 

I had every intention of getting up later and closing it when I got ready for bed.  But that never happened.  I guess we were both exhausted and so we fell asleep and I didn't wake up until about 4 am.  By then the damage had been done.  Not only was my window cracked, but the temperature had dropped about 25*;  my heating pad was off and I had gone to sleep without taking my pain medication.  A triple whammy.

So this morning I woke up with a right hip that said "Oh hell no!!" when I tried to get up and walk.  Why?  Why did I make this simple mistake?  I know better.  I know what happens when I go to bed without taking my meds; I know what the cold can do to my bones. 

Was it just that I was so content to be back in my husband's arms again?  I have to admit it, after 5 days it did feel good to be back in the arms of the one who makes me feel safe. 

But I'm so angry at myself for making such a beginners mistake in health care.  SO what have I learned?  I now have one of the alarms on my cell phone set for 11:00 pm to make sure that if I do fall asleep I have ample time to get up, take my meds, turn on the heating pad and crack the window.

A tough price today to pay; but hopefully a lesson learned for the future!

Saturday, April 21, 2012

.small victories are still victories.

This past week, I went to work, on time, every day.  Monday - Friday; 8:00 - 4:30.  Every single day.  I know to most people that seems like nothing.  They do it every day; every week and don't think twice about it.  I honestly can not tell you the last time I worked an entire week.  I would either go in late one or two days or miss a day completely. 

One may think how can a person be happy that they were able to work for an entire week?  A day off; a few hours off every week would be wonderful.  But it's not.  Not when it's out of your control.  Not when you're home in bed; medicated; hurting.  Not when life is passing you by. 

Those who suffer an invisible illness lay at home in bed wishing they could get up and go to work; while those at work wish they could go home and go to bed.

Sometimes life is indeed backwards. 

Sunday, April 15, 2012

.my tomorrow is gone.

That's the one thing I've learned.  We always say "Oh, I'll do it tomorrow; It can wait until tomorrow; Tomorrow is the day I'll start."  My tomorrow has been stolen away from me.  I no longer have the chance to start things tomorrow.  I have to begin making my changes now.  Today.

I take 8 prescription medications.  One has to be taken on an empty stomach; an hour before I eat.  One has to be taken with food.  One has to be taken 2 hours after I eat.  One can't be taken with the other.  It's crazy!!  I've always TRIED to take them how I'm supposed to.  Here and there I'd get it right; but more often than not, it was a miss.  I no longer have that luxury.  Now I've set all 5 alarms on my cell phone to match my medication doses.  I sat down and actually drew out a schematic to figure out what needed to be taken when and then adjusted my alarms to match.  I'm telling you, it was no easy task! 

I've been going to give up cokes.  I've cut back here and there but was still averaging at least three 12 oz cans of coke a day.  I love love love coke!!  But it to has to go.  The sugar; the caffeine; all the empty calories.  It does absolutely nothing positive for my health.  It will be replaced with milk; with juice and with water.  Things that will do a body good!

I have to start eating and eating healthy.  I kid you not when I tell you that this is my nearly daily menu:  breakfast: toast and a coke; lunch: frozen tv dinner and a coke; dinner: toast and a coke.  If I have a snack during the day it's usually chips or a rice krispies treat from the vending machine at work and if I have a snack at night, it's toast.  I literally go through 4 loaves of bread a week.  But I'm not getting any nutrition.  Other than the little that I get in the frozen tv dinner I have for lunch, very little nutrition.  So I have to start eating fruits and vegetables; drinking juice and milk will help but I also have to start making meals.  A real dinner.  Oh my husband will be so thrilled!!!  Get up in the morning and have a healthy breakfast.  Maybe some eggs or oatmeal; a piece of fruit.  Pack a healthy lunch and not just have a frozen tv dinner.  Again incorporating fruit and veggies and protein. 

And finally I have to get back to exercising.  I can't believe how much I was doing a year ago.  Walking daily; sometimes running; doing weights; going for bike rides with my daughter; going swimming in the summer; going on hikes in the forest.  In the past 6 months I've done nothing.  My body has had neither the energy nor been free enough from pain to allow me to be out and about moving.  Now I will say that I've been lucky enough to only have put back on a few pounds but that doesn't change the fact that my "fit" status has gone from oh......let's say a 7 to a 0.  It's going to be baby steps; just like it was in the very beginning.  It's going to hurt; I'm going to be tired but it's going to make me better in the long run.

SO there's no time to wait for tomorrow.  What the poster above is so absolutely true.  My health is not going to improve.  It will just continue to decline.  Unless I want to keep feeling the way I do now; unless I want to continue to watch my health decline on a very rapid scale; I have to throw away tomorrow and program my mind to the knowledge that I only have today.  One day at a time; one step at a time. 

My health won't wait until tomorrow!

Friday, April 13, 2012

.wondering what humility feels like?

Having to ask your 25 year old daughter to come over and clean your bathroom because you have neither the strength nor energy to do it yourself.

Coming to this point has made me feel more humiliated than anything I can think of in a long time.

I'm grateful for her compassion; she has tried so hard to blow it off and make it seem like it's no big deal and to her, it probably isn't.  She's doing something to help her mom out.

But for those of you who have had to reach out and actually ask for help, you know how difficult it can be and how much it breaks your heart to realize you can't do something.

But chin up.  New medications have been started and who knows what next week will bring! 

.why has no doctor told me this before?

I've been battling hypothyroidism for well over 10 years now.  Probably like most of you, I know the popular symptoms of the disease to be fatigue; weight gain and loss of hair.  Through all the years of increasing my synthroid, I have still never felt well. 

After meeting with my dr yesterday and talking about my thyroid, it really got me wondering about it.  She talked to me about the difference between being on a generic vs being on actual Synthroid; she talked to me about the importance of taking the medication on an empty stomach, one hour before taking anything else.  She talked about the fact that just because at times my numbers are considered "in range", what may be in range for one person, may not be true for me.  She brought this up because I told her (as I told my endocrinologist many times) I never felt symptom free.  99.9% of the time I carry around the symptoms of hypothyroidism.

I remember talking to one of my girlfriends years ago one evening and she just didn't seem to feel well.  I asked her if she was ok and she said she just wasn't feeling up to par that day as she had forgotten to take her Synthroid that morning.  I was stunned!  I asked her did she mean to say if she missed ONE pill she could feel a difference?  She said absolutely.  I've never even noticed a difference taking the pill.  Much less if I missed one!

So I'm having a terrible night with pain in my right hip and leg so bad I can't get comfortable no matter what I do and no matter what I take.  So I get up and start googling around about my thyroid and come across this article from The Mayo Clinic.  As I'm reading the list of symptoms I'm checking them off one at a it; got it; got it.  All the things I had ever heard about.  But then I see this..............

Can hypothyroidism cause joint pain? I have hypothyroidism and have been experiencing severe arthritis-like pain in my shoulders and hips.


from Todd B. Nippoldt, M.D.
For some people, hypothyroidism can contribute to joint and muscle problems.
Specifically, hypothyroidism may lead to:
  • Muscle aches, tenderness and stiffness, especially in the shoulders and hips
  • Joint pain and stiffness
  • Swelling of the knee joint and small joints in the hands and feet

OMG!! What??!?!  Huh??  Say what?!?!  I am stunned!  Floored!  Absolutely flabbergasted!  I have NEVER heard this before.  In well over 10 years of dealing with this disease no one has ever mentioned this to me!!

Could this be the answer to the problem I've been having for years?  Could the reason all the tests are coming back negative is because the answer has always been right under the drs nose and they just haven't seen it??!!

I'm still so stunned and taken aback by this information that I feel a little bit like I'm in shock.  But rest assured....later today I WILL be on the phone with my doctor!!

Thursday, April 12, 2012

.you take the good; you take the bad.

Last night we had a wonderful time at our house.  We were celebrating our son's 23rd birthday.  He and his girlfriend came over; our daughter and her husband came and our son's best friend joined us as well.  I made lots of homemade Italian goodies, mostly from scratch plus lots of other goodies to snack on.  We played a game our son taught us "Yes/No" which is somewhat equivalent to what we played as kids but known as "Hot/Cold" and in much more detail.  We laughed until it hurt!  Then we pulled out the Wii and had bowling tournaments.  Before long it was time for everyone to head home; leftovers were handed out and I collapsed on the couch.  I was utterly and completely exhausted.  But it was worth every minute of pain last night and the exhaustion I'm still feeling today to spend that time with my family; have fun; laugh and make memories.  I know there won't always be good days, so I'm going to enjoy those that I do have, when I can!

Then this morning finds me at my drs office for a follow up on some blood work.  The numbers aren't good.  My thyroid is completely out of control again (6.116 - should be 0.340) this despite being on 200 mcg of Synthroid every day and my iron count is very low (32 - should be 40-150).  "Girl, how in the world are you getting out of bed in the morning?!"  she asked me.

I just started crying.  I'm crying as I write this.  See, for those who don't deal with several chronic illnesses, what you fail to understand is that there is always SO much going on with your body that it's hard to know what is illness and what is just life.  Everyone has a tough time in life; everyone has hard days.  I just assumed I was going through that phase of life.  I had also thought (who likes to admit this out loud) that maybe I had gotten lazy.  I was sleeping alot.  When I make my bed in the morning, I count down the hours until I can climb back in it!  On the weekends, I'll do a couple chores and take a nap.  I'm in bed by 8:00 most nights and have to fight to get out of bed in the mornings for work.  I just thought I was being lazy.   And there's just such relief and validation to hear your doctor tell you that your blood work is so bad you shouldn't be able to get out of bed in the morning......well, it just makes you cry.

So medications have been changed; medications have been added.  It's discouraging to hear that it will be at least a month before I notice a difference, but if I can try to keep my eyes focused on the future, hopefully time will move swiftly.  She's also still waiting to hear from the Rheumatologist and said if she doesn't by Monday she's going to start playing hard ball.

So it was wonderful to enjoy a fun filled night with my husband, our children and their friends.  It was worth every ounce of effort it took to see the joy in their eyes.  It was discouraging to get the news this morning about my blood work but encouraging to have hope that relief is in sight.

As I said, we all have good days and we all have bad days.  Maybe I'm not so different after all!

.you take the good, you take the bad, you take 'em both and there you have the facts of life!

Monday, April 9, 2012

.my unhealthy, health history.

So, if as my previous blog states, I haven't always lived this way; it must beg the question be asked, what happened?  As my doctors would say, that is the million dollar diagnosis.

Let me start by saying I'm a 49 year old married, white female.  I include my race and sex in that because as many know, some diseases are more prominent in males or in people of other races.  I don't drink; I have never drank.  And I don't smoke.  Now, I did smoke "flip top" Marlboro's for about 6 months when I was 16 and thought it was ultra cool, but learned very quickly how uncool it really was.  I was raised in a home where both my parents smoked and subjected to daily doses of second hand smoke and to this day my mother can go through 2 packs without thinking about it.  I only use prescription medication but will again confess to smoking pot for a period of about 6 months, again as a young teenager and again thinking I was so cool.  That's the only illegal drug I ever did.

I had a rather unremarkable beginning.  I was born full term in February 1963 and though I couldn't tell you what I weighed, I never remember hearing anything about me being either a large or small baby so I think it's safe to assume I was of average weight.  I had no serious illnesses as a child other than a constant battle with my tonsils.  Those ended up being removed on Halloween, yes my friend on Halloween, in 1970.  Now I have always asked my parents "What in the world would allow you to have your child's tonsils removed on Halloween?"  I truly find it hard to believe it couldn't have waited another couple weeks!  Stomach aches; stubbed toes and runny noses followed me around from time to time but overall I experienced good health as a child.

And while this isn't really considered "health" related, I thing it does bear mentioning.  On February 21, 1981 I was hit by a train while driving to work.  Yes, I did say hit by a train.  No need to go into all the details but needless to say it was a pretty horrific crash that I was blessed to walk away from.  This was before the time of seat belts and I will say that it did knock me into the passengers seat.  But yes, I walked away.  They did make me go to the ER to be checked out and have xrays done but all was well and I was sent home.  Life continued quietly on. 

In January 1984 I got married and my husband and I knew we wanted to start a family right away so I never went on birth control.  In June our dream came true; then in August it turned into a nightmare.  A miscarriage.  Though my body refused to complete the miscarriage itself and I was forced to have a D & C our plans for starting our family were put on hold.

It took 3 years before I would become pregnant again.  As those who have suffered a miscarriage, you know you enter the next pregnancy with much more caution.  Finally as the 2nd trimester began we felt safe in sharing our good news:  We were due with our first child on September 21, 1987.  But my body had other plans and in June I became toxic.  Then pre-eclampsia set in.  I was immediately put in the hospital where I was set to remain until September.  My blood pressure was frighteningly high and hard to keep under control.  Finally in the wee hours of Saturday July 25, my water broke and almost 14 hours later, 4 lb 6 oz Samantha Jo was delivered via c-section.  Strong, healthy and a little small; but no health problems to speak of.

.our beautiful daughter, her husband Aaron and their dog, Luke.

Life went on.  Since we knew we wanted a larger family and because it had taken us 3 years to get pregnant with her, we made the decision not to go on birth control after Samantha's birth.  In August 1988, we discovered we were pregnant again.  As with my second pregnancy all appeared to be going smooth.  We were due to deliver our second child on May 19, 1989.  Once again my body had a mind of it's own and on March 26 I went into premature labor.  After 3 days in the hospital and being dilated to a 3, they were finally able to stop my labor and let me go home on bed rest.  2 weeks later the contractions started again.  We met the dr at the hospital and I was in full blown toxemia with pre-eclampsia again.  Serious distress this time.  No waiting around to see what was going to happen.  This child was coming out and he was coming out now.  On the afternoon of April 11 in an emergency c-section, 6 lb 3 oz Kevin Scott made his way into the world.  A strong, healthy, somewhat early baby boy.

.our handsome son with his dog, Rebel.
Now comes the interesting part.  Through 2 difficult pregnancies, my husband and I had made the decision my body didn't need to be pregnant again so we had signed the papers to have my tubes tied when our son was delivered.  The next day we talked to the doctor about it and he off handily said "Yeah.  We could only find one but went ahead and got that one taken care of."  Had we only known then what we would later find out.

Life moved along smoothly and what most Americans would consider normal.  We were neither rich nor poor.  Middle middle class I guess.  My husband and I both worked and my mother took care of the children until they were 2 and they entered daycare.  By this time we had moved from Florida and were living in our current home in the mountains of Western, North Carolina.  We were happy; healthy and life was good.  As a side note I will add that on March 11, 1995 our daughter was diagnosed with insulin dependent diabetes.  It was tough for several years; times when I never thought we'd get her blood sugars under control but now, at 25, I'm pleased to say she's very much in control of her health and suffers no complications from that horrible, horrible disease!

.just fyi.

Time for something weird to happen!  I don't remember the month but the year was 1999.  I woke up in early hours with what I knew was a kidney stone.  My mother had suffered with them as I was growing up so I was very familiar with the symptoms.  So to the ER I headed with the hubby in tow.  This was my first introduction to morphine and boy did I love it!  Immediate relief.  Sweet!!  Then they wanted to do an IVP (fancy word for a xray with dye) to see exactly where the stone was located.  Quickly the questions began.  "Do you have a history of kidney problems?  Do you have other kidney xrays we can look at?  Do you have a history of kidney infections?"  NO, NO and NO.  Now what's going on?  "Oh I'm sorry we can't tell you anything, you'll have to see your dr in the morning."  Well, I'm sure you can imagine how those next few hours were spent.  At 9 am I was at my drs door.  "Find out what's going on!!"  Well it would seem they only found one kidney.  On the right.  Nothing on the left.  Say what???  Yep, no left kidney.  Now my mind SHOULD have kicked back to the statement from the ob/gyn in 1989 "Yeah, we could only find one tube but we took care of it".....but it didn't.  It never even crossed my mind.  I was scared; I was in a panic.  What did this mean?  Tests were done and it was determined that I had never developed a left kidney and my right kidney was quite healthy.  Because there had never been a left kidney, it had always had to compensate for being on it's own so they saw no cause for concern.  OK.  Felt a little weird but let's get on with life.

In February of 2000, I had the opportunity for a 3 week mission trip to India with several of our church members.  I'm not a traveler and absolutely hate to fly; but if you're a Christian and ever felt like the Lord has truly laid something on your heart, you know when He says do something, you do it.  So I went.  Nothing remarkable (health wise) happened and I returned having fallen in love with the beautiful people of that deprived country.

And along life's road we continue.  Finally mid-December 2002 hits.  And I wake up one morning in pain.  All over.  On a scale of 1-10, a 10 from head to toe.  Just assumed it was one of those things.  Though I was hurting I went in to work because it was the day of our Christmas party; Friday; pay day and we only had to work half a day.  Over the course of the next few days, the pain passed and I seemed ok.  In mid-January it hit again.  I went to my dr; had the standard blood tests done; xrays were completed and everything seemed fine.  "Must be getting old" he joked! HAHAHA.  He gave me some pain meds and some muscle relaxers and suggested I see a chiropractor.  I did; found some relief and silly me, thought life would again, just move on.

By February I was suffering great pain in the top of my right foot.  I returned to the dr who did blood work and an xray.  This seemed to be becoming my standard on the menu at his office!  The xray showed nothing but he felt it may be a stress fracture "Those don't always show" so wear a tight sneaker and it should be ok in a week or two.

In a week or two I couldn't put a shoe on it.  The pain was off the charts; the foot was completely swollen and it now had the sensation of razor blades being sliced on it.  Back to the dr and another standard menu order.  This one came with a referral to an Orthopaedic dr.  Bet you can't guess what the ortho suggested?  If you guessed blood work and an xray you win the prize!!  Seriously??  How many times do these have to be done?  He saw no stress fracture; the blood work was unremarkable and so he put me in a boot.  That should take care of it.  Check back in 2 weeks.  I was back in a week.  The symptoms were now presenting themselves in my left foot.  Now mind you this is all from the ankle down.  Redness, pain, swelling and the feeling of razor blades slicing across the foot.  At this point, with symptoms in both feet, I could no longer walk and was in a wheelchair.  I couldn't take the 10 steps from our bed to our bathroom and had to get a bedside commode.  I could no longer take a shower; cook dinner; or spend time with my family.  During the course of these few weeks I was given steroids; more blood work was done; nuclear bone scans; MRI's; high doses of pain medications and anti-inflammatorys.  All my ANA markers came back clean but my SED rate was off the charts.  I tested negative for everything.  Something was very wrong; but no one seemed to know what.  I saw a Rheumatologist; Endocrinologist; Gastrointerologist and I'm not sure what THEY were, but a room full of specialists at Duke University.  No one could come up with anything.

Then about 2 months in, it began to radiate up my legs.  I woke up one morning and all the symptoms were in my right leg almost to my knee.  I couldn't even get myself out of the bed into the wheelchair.  I called my husband at work, who called an ambulance and to the ER we went.  At this point if you don't know what he did, I'd have to guess you haven't really been reading the blog, but yep, blood work and xrays.  He did however decided (for whatever reason) that he wanted to do a CT scan as well.

Well looks like we finally found something.  And it also looks like we didn't find some things that we should have.  First, what they did find.  A 6 inch abdominal mass.  I'll save you the suspense and tell you here and now that it was nothing more than a mass and it was benign.  But how about what we didn't find.  Now, remember back to the story about getting my ONE tube tied and the story about only finding ONE kidney.  Now this dr discovers lots more ONE's.  Only one fallopian tube; only one ovary; half of a bladder and half of a uterus.  Say what???  He was stunned to hear that we had 2 children but not at all surprised to hear that I had been toxic and both had been premature.  How in the world was this not discovered before?  Who cares.  FIX MY FEET!!!  After 2 weeks of passing the buck back and forth about who should go after this mass in my abdomen (at this time not knowing what it was) it finally fell to my ob/gyn who also had a urologist and gastrointeroligist on standby in the OR as she didn't know what she would find when she opened me up.  Other than one of everything and a 6 inch mass, nothing remarkable.  The mass was removed and because of scar tissue and some attachment to the one ovary I had, a complete hysterectomy was completed as well.  After 6 days in the hospital I was cleared to go home.

And as a shock to all of us, I was able to cautiously WALK out of the hospital under my own power.  Had the mass had something to do with what was wrong with my feet?  Was it pressing on a nerve?  We don't know.  What we do know is within days after my surgery my feet began to look better; I could walk and I seemed to be on the road to healing.

What we didn't know at the time though was that my feet would never be the same.  While the immediate symptoms were gone, I was left with an underlying pain that would come more than it would go.  A deep, achy pain.  Like I had walked for hours.  The pain would radiate up my legs, into my knees, hips and lower back.  It soon became clear that my legs would never be the same again.  More tests; more xrays; more blood work.  And no answers. 

I now live on Vicodin 4 times a day and Clonazepam 2 times a day.  I live with a heating pad as my best friend and most nights am in a hot bath sometime between 2 - 4 am.  Some days are good.  Most are not. On a scale of 1 - 10 the average day is about a 4.  It's always there; in the background letting me know it's never going away.  Usually 3 - 5 days out off the month, I'm at a 10.  I'm in bed and immobile.  I can't do much of anything other than watch reruns of "The Big Bang Theory".  I've tried every kind of shoe you can imagine and have discovered I can wear a pair of  $129 sneakers or a pair $4.99 flip flops.  No in between.  The bottom line is pain every single day of my lfie in my lower back; hips; legs and feet for a reason that can't be diagnosed.

One would think that's the end of it.  But no.  It was a Friday afternoon in March 2004.  I noticed I began having some pain in my right eye.  Though I hadn't had it in years, it felt like pink eye.  I went into the restroom at work and sure enough it looked red.  I got back to my office and called the eye dr.  Since it was late in the day and it was Friday, they advised me of something I could get over the counter and if I wasn't feeling better by Monday, to call and they would work me in.

By Sunday night I felt like I was blind.  The pain had moved over into my left eye as well.  That horrible razor blade feeling was back in both eyes and I couldn't stand any light.  In doors I had to wear sunglasses.  I kept cold wash clothes on my eyes and took extra pain medicine.  Now, I will say I didn't go to the ER.  I'm not really sure why.  Looking back the only guess I can offer is that I had been through so many trips to the ER to hear "I don't know" I decided I would wait unitl Monday and see the eye dr.

And so the visits began.  For the next 6 months.  WIthin 2 weeks he had my major symptoms under control but as was the case with my feet and legs, my eyes would never be the same.  Several rounds of blood work and another visit to Duke left me with no clear diagnosis.  I had always had 20/20 vision but now I was forced to wear glasses.  I often can't see good with them on; I can't see a thing with them off. 

Though I earn one sick day a month at work and a day and a quarter annual leave, I have no leave built up.  I'm covered under FMLA and have a very sympathetic supervisor who works with me as much as she can.

So why start this blog now?  It's been 10 years of suffering; 10 years of deciding this is the hand you've been dealt, deal with it.  Why now?

Thanks for asking; I'll be glad to tell you!  I've seen too many stories in the paper of celebrities dying from accidental drug overdoses.  Even if it is prescription pain medication.  Now I know it's different with celebrities and I will honestly tell you (on my dear wonderful deceased fathers grave) that I am very, very cautious with my pain medication, but I'm sick of it.  I'm so tired of taking pain medication every day.  I know that it's affected my memory.  It keeps me tired.  I know it can't be good for my body.'s time to try again.

10 years have come and gone.  10 years where modern medicine has made some great advancements.  10  years where maybe this time they can find out exactly what this invisible illness is inside of me that's trying to steal my life away.

One thing I am somewhat proud to say is that in all the drs I've seen; all the tests I've had done; not one dr has ever made me feel like I was crazy or that this was all in my head.  They have all agreed that there is something wrong somewhere in my body but no one seems to be able to find it.  NOW, that's not to say there's not many a day where I don't feel like I'm crazy; where I don't feel like it's all in my head.  These are people with several PhD's after their names.  Surely they should be able to figure me out.

I don't know.  Time will tell.  While I know I can physically take all their tests again, I'm not convinced I'm emotionally strong enough to hear all the "I don't knows" again.  Those are hard.  I've heard the words Lupus, MS, Sarcoidosis, Lyme Disease, RA and Muscular Dystrophy.  But none of those are easily diagnosed. ever faithful, ever strong husband and I begin again.  One day at a time; one step at a time; one test at a time to see if we can finally find out what this invisible illness is that seems to be eating away at my body and see if we can finally put a name to it.  I have to say that's truly one of the hardest parts.  Having people ask "What's wrong?" And not being able to answer them.  As you can tell by the length of this blog (and I believe we all have a story this long) it's not something you can just say "Well, this is what happened."  It's too detailed and often too hard to believe.  So we try again to get a name for whatever it is that seems hell bent on destroying my body.

Surely with that, there will be some peace.

Sunday, April 8, 2012

.i haven't always lived this way.

It's hard to believe and sometimes it's even harder to remember.  I'm certain my children don't remember that their mother was ever anything other the woman they see today.  Someone who is medicated a lot; in bed a lot and has to say "No, I can't go" a lot.

But there was a time when I was what the world would refer to as a normal mom.  I can remember specific things from when they were little that my body would never allow now.

I used to lay across the bed on my stomach with my legs hanging off and Scott and Samantha would each climb on a leg and we would play horse.  I would bounce them up and down and all around trying to knock them off.  Oh my goodness they would laugh and laugh!

Their dad and I would take them to the swimming pool every summer and play keep away.  I would grab a child and shout at their daddy "You can't have Samantha, I want her!"  And he would snatch her away and say "No, I want her!"  A few minutes of that and then I would throw her at him.  "OK, you can have her!" And he'd throw her back. "I don't want her, you can have her!"  Back and forth we'd go.  Then it would be Scott's turn.  They would laugh until I was afraid they would drown.

We did bike rides for diabetes; even organized a diabetes walk in our home town.  We went to Charleston every summer for vacation and would laugh and run and body surf at the beach.  We chased after sand dollars and played in fountains.  We did Disneyland and all that it encompassed several times.

In the winter we would grab the sleds, head up to the Sheriff's Department and start sledding down the hill.  Oh my gosh we had so much fun!

We walked all over town trick or treating with family and friends; we would walk up town in the evenings for the Twilight Tour; we used to go out and pick out our own Christmas tree and I can still remember that first year our son was the one to cut it down.

Things I could never do now and things I'm afraid they won't remember.  These days they come home and they see mom in the bed; again.  Oh she's sleeping.  Again.  And I can see it in their faces.  I don't see compassion for a mom who is struggling physically.  I see that look that says "All she ever does is stay in bed.  She never wants to go anywhere or do anything."  I hear that sigh in their voice that really means "Yeah right, whatever."  I try to remember that they are still young.  But I pray that they never have to know how it feels.

I hope through pictures and videos one day they'll be able to look back and remember that there was a time when mom was fun.  That mom was the one who taught them how to hitch hike.  That mom used to put them in the little red wagon and take them up to the library and to Rocky's for lunch.  That mom taught them about sleep wherever you want night. That mom wasn't always sick.

I hope that one day I won't look into their eyes and see the frustration or the lack of compassion I see these days.  I hope that one day they'll understand that though this is who I am now, this isn't who I always was.

And it certainly isn't who I want to be.

Friday, April 6, 2012



a complete depletion of energy or strength <the day-long battle against the blaze left firefighters in a state of utter fatigue>
It's really not that hard to understand.  Read that first sentence.  A COMPLETE......not a little; not a touch of; but a COMPLETE depletion of energy or strength.
I'm not sleepy; I don't need a nap.  It's not just that it's been a rough day and I'm tired.  It's that every single ounce of energy and strength has been zapped from my body and there is absolutely nothing left to give.  

It makes no difference that I've slept 12 hours; It makes no difference that I've not moved from the couch all day; It makes no difference that I've not been on a 2 hour hike like everyone else.  My body doesn't respond to rest like yours does.  It's not like I'm a car and I can go to the gas station and say "Fill 'er up with energy please."  I can't get a little bit of rest today and feel better tomorrow.

Fatigue is all consuming.  It is falling to the bed feeling like you can't move another step; sleeping for 10 hours and waking up feeling more tired than you did when you went to bed.

And here is what I love the most!  "Did you ever think maybe you're sleeping TOO much?"  Really?  Did you ever think you were a complete idiot??  I'm sorry that most of the time when you come to my house you find me sleeping; I'm sorry that most of the time when you want to go out and do something I have to say no because I have a "complete depletion of energy or strength".  Most of all I'm sorry that you think it's because I'm being lazy or that it's because I'd rather sit at home and watch TV.  
Is it possible that you truly believe I enjoy spending my life in bed?  That I enjoy watching you go to the movies and out to dinner and hiking in the forest and I would much rather spend it in bed watching reruns of "The Big Bang Theory" for the 700th time?  Do you really believe that's how I want to live my life?
Do you have a clue as to how much fatigue physically hurts the body?  It's not just a simple act of being tired.  It affects my bones and my joints and my muscles.  They hurt so much that sometimes another step isn't physically possible.  Do you know how much effort it takes to take a shower, put on make up and get dressed to go out?  Something so simple that others take for granted; something that's so easy for you is rarely the case for me.
How about you try this.  Next week put a 75 pound back pack on the minute you get out of bed.  Keep it on all day long.  About 10:00 am, take a slight tumble down the stairs.  Get back up and keep moving.  Around noon, add another 15 pounds to the back pack and at 2:00 pm, take another tumble down the stairs.  By 4:30, put 20 pound wrist weights on your arms and as you leave the office, you got it....tumble down the stairs.  By the time you get home, add another 10 pounds to the back pack and another 5 pounds to each wrist weight; now add 10 pound ankle weights.  
See if you want to come home and cook dinner; clean house; go to the grocery store; go shopping; go to the movies; have the gang over for game night.  
Is every day that bad for me?  No.  I am blessed that I have good days.  What I refer to as "making hay while the sun shines."  I try to squeeze in so much into one day that well, the next day I pay for it.  But when I am making feels so good.  It feels good to be with my family and my friends; it feels good to see life outside my house.  I enjoy laughing at a good movie; enjoying a good meal.  Shopping with my daughter; lunch with my son.  An evening walk with my husband.  
But I ask you; I beg you.  Please try to understand.  When I tell you "I'm tired" it encompasses so much more than just the simple "I'm tired".  I don't need a couple extra hours rest; I don't need more vitamins; I don't need to eat more vegetables.  Absolutely nothing except the completely unexplainable internal workings of my messed up, screwed up, sorry excuse for a body can make the determination when I'm going to not "be tired."  
This isn't the choice I would have made for my life.  I pray it's the life you never have to live.  But you need to understand that for people like me, fatigue is about so much more than just being tired.  

I hope you'll remember that the next time you find me in bed and release that ever slight, yet audible sigh that yes, I can hear and roll your eyes when you think I can't see.

Sunday, April 1, 2012

.thankful for those who understand and help.

Yesterday we buried my aunt.  My mom's last living sibling.  6 months ago we buried her other sister.  Yes, they were elderly; yes they were sick.  But that doesn't change the pain nor ease the sorrow.  My mom is 85 and not in good health.  This "double whammy" has knocked her for a loop.  So much falls on to my shoulders.  Not that I would have it any other way.  I have half brothers and sisters who are here and there and sweep down when something happens and try to help out.  But they weren't raised with mom and really don't understand her needs.  And she has what she considers to be embarrassing physical problems herself that she's uncomfortable around most people.  I know they mean well; I know they probably feel I close ranks and won't let them in; but I know her and my goal during these times is to keep her safe and comfortable and remove as much as the burden from her that I can. 

So I pull up my boot straps; keep my pain medication close at hand and forge ahead to be the rock that she needs to get through.  My husband always at my side to do whatever I ask of him; and now that they have become adults, my 2 children there to help carry the load.  I swear to goodness she loves those grandchildren more than she loves me!  But it brings me such comfort to see them step in to help me, help her. 

And then the "day after" arrives.  All is said and done; my aunt has been buried; the families have all returned home.  And real life kicks in with a fierce and ferocious vengeance.

As most who deal with auto immune disease know, it's not just the illness itself that will take it's toll on your body; stress, as it does with most people, plays a ten fold part in how I feel.  So this week I've felt the loss of my aunt; watched my mother in her very frail state try to deal with the loss; take her to her medical appointments; keep medical appointments of my own; worrying about being out of work, again; ensure that my mom does all she needs to do to be at peace with saying goodbye to her sister and then, finally, the funeral.

Friday night I have 3 of my half-brothers and a sister-in-law at my house; my children and my son-in-law.  So I'm busy trying to keep everybody happy.  It's my role in life; it's what I do.  Make sure there's food; does everyone have a drink; keep the conversation flowing.  I will say this.  It was one of the nicest visits I've ever had with these 3 guys.  Our relationship is a whole other blog in itself; but our time together Friday night will be cherished.

Saturday morning dawns rainy and dreary and my thoughts immediately fall to my mom.  At 85 she has a swallowing disorder and weighs 84 lbs.  She can't swallow solid foods and has a difficult time even with liquids.  She's very weak on a good day.  It's been a very difficult week for her and I knew Saturday would be the pinnacle.  So I was extremely worried about her yesterday.  A 2 hour visitation, the funeral service and then the burial, uphill at our church's cemetery.  I was constantly on the go.  Making sure she was getting sips of Boost to keep her strength up; making sure she was sitting down to avoid exhaustion and helping her outside to have a cigarette.  Up and down; in and out; constantly on the move.  But not without help.  My half-brothers try to step in and take turns with mom but she's so stubborn and I know she hurts their feelings but she's used to me; my husband knows my looks and when he sees it, he comes to see what he can do.  My daughter pinch hits with me in sitting with my mom.  A dear friend from church who has a 4 wheel drive offers to drive me and mom up to the grave site.  Vehicles aren't allowed but they know mom could never make the journey up.  Then when the service is over, my son and son-in-law step in on either side of my mom (they're big burly guys) and darn near carry her down to the car.  I'm not sure her feet ever touched the ground.  My husband has rushed to get the car and my daughter and half brother are on either side of me to make sure I make it down the hill safely.  How blessed am I?? 

By 5:00 it was over and most of the family headed out to the church for dinner.  I headed home to be with mom.  To make sure she got some food in her; to make sure she took her medicine; to make sure she wasn't going to collapse from exhaustion.  By 6:00 I am finally home.

Now it's my turn.  The pain throughout my entire body is off the charts.  I'm afraid of how much pain medication I've taken and though the thought of a steaming bath sounds comforting, I can't begin to imagine getting in and out of the tub.  So without even changing I grab the heating pad, curl up on the bed and fall asleep.  Somewhere in the next few hours my family comes and goes but they're careful not to disturb me.  They know how hard this day has been on me both physically and emotionally.  And as I have been there for my mother, they have been there for me.  I couldn't have made it without them and my prayer is that I let them know how very much I appreciate all that they did.

Today I wake up stiff; sore and in pain.  But knowing that I'll be able to get that hot bath in and that will be a welcome relief.  Knowing that I'll not be so busy that I'll be able to track my medications and ensure I get just what I need.  Most of all, I'll be able to take the time to reflect on my aunt who is now skipping through the streets of gold with her other siblings; happy, healthy and strong.  I'll be able to take the time to remember the good times and smile when I think of how thrilled she is to be in Heaven.

Sometimes real life is tough.  For all of us.  Often it's tougher for those of us who have an invisible illness and who suffer chronic pain that can never be explained to someone who doesn't have it.  But today will be a day of rest and reflection.  Above all, it will be a day of gratitude for those in my life who make this invisible illness of mine just a little bit more bearable because of their kindness.

Rest In Peace, Aunt Josie.  You are finally Home.

.my mom; aunt josie; aunt libby.

Thursday, March 29, 2012

Things NOT to say to someone with a chronic illness:

.....but you don't LOOK sick!
.....everybody gets tired.'re just having a bad day. must be nice not having to go to work every day.
.....i wish i had time to take a nap!'d feel better if you just got out more.'re just getting older.'d feel better if you just got more exercise. can't be all that bad!'s all just in your head.'re just depressed.
.....there are people worse off than you!'ll just have to tough it out.
.....maybe you need to pray more. just need to have a more positive attitude.
.....this too shall pass!

But you don't look sick!

How many of us have heard that statement?  And how many times have we wanted to respond, "Funny, you don't look stupid!"

One of the most frustrating things with a chronic condition such as lupus; fibromyalgia; chronic fatigue syndrome etc. is that there is nothing you can show a person.  It's not like a broken bone or a missing limb.  It's an invisible illness.  One that no one can see or experience no matter how many times you try to explain it to them.

I feel certain we've all gone through the phase (I have found it to be cyclical) where I feel like I'm absolutely crazy!

Is it me?  Is it all in my head?  Are they right?  And then I'll come across that one doctor who will restore my faith that no, it's not all in my head and no, I'm not crazy.  Too many symptoms add up to something being wrong.  It's not going to be easy and it's not going to be over night, but we ARE going to find out what's wrong with you.

Through this forum I'm hoping not only to share the story of what brought me to start this blog, but through the various day to day struggles, doctor visits, medical test and yes, even the joys that come with having to live with a chronic illness.

I hope you'll share your thoughts and ideas and any suggestions you have that may benefit one or all of us.  Together we can work together to educate the world that even though our illness may be invisible, it is, indeed, very, very real!