.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."

.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 bedroom......it 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!

.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!

.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. 

.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!

.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 time....got 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.

Answer

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!!