Fappiness…

What is fake happy?

I feel like  I need to give you permission to be honest with yourself.  So there it is.  You have my permission (like you needed it, but anyway, you have it).  If you were to be really honest with yourself, truly honest, what would you say to yourself?  I know what I would say because I couldn’t sleep last night.  That’s always an indicator that I need to write about the truth.  How I truly feel.  Without the pretty stuff.  So here it is.

I don’t feel thankful right now.  I don’t.  I just imagined a collective gasp from like 20,000 people.  In reality, you might just merely be thinking ok, why?  Or maybe you are thinking you have lots to be thankful for, why are you not thankful???  I demand it.  If you thought the first thing, you get me.  If you thought the second, I want to explain.  It’s not that I’m NOT thankful…I am.  I am just having a hard time feeling that way some days.  I know I have so much in my life to be thankful for.  I do.  I know this.  But unfortunately, there is something inside me that hasn’t been getting filled up lately and I don’t know how to fix that.

As I talked to my husband about it last night, I think he began to understand.  I didn’t want to talk about it because I felt like I was ungrateful.  I felt like the “Inspirational Page Owners Police” were going to come and take away my license to operate a motivational page.  But then he said why can’t you write about the truth?  And that seemed easier.

Two years ago when I realized that something else was happening to my body yet again, I made the decision to stop teaching.  I went to my husband and I calmly said that I couldn’t explain it, but teaching was making me more sick.  I just knew it.  The last year that I taught I was out many days until finally, I was out for 3 solid weeks.  That year started off with a breast cancer scare, and I don’t know if I really recovered fully after that.  I was on edge.  Something was coming, but I couldn’t explain what it was.

I would sing my happy songs, smile at the beautiful children, and fake smile at everyone else.  I had previously been known as Mrs. Happy.  In my head, I was now Mrs. Fappy.  Fake-happy.  The pain in my body had already been building up for years and I flinched when anyone touched me.  If the children were sick, I put them to the back of the carpet, because yes dear parents, a few of you sent your darlings to school on Tylenol hoping I wouldn’t notice, but I always did.  They had fevers and were burning up after they had already hugged me and loved on me because that’s just how I am.  I am not going to let them be sick in my room without them knowing I still love them and want to take care of them.  I did, however, have them go to the nurse.  Sometimes you came and picked them up, other times, not so much.  You were busy and had no other options…I get it, but it made things difficult.

Unfortunately, I am immune compromised and my immune system isn’t what it used to be 17 years ago.  So I knew that I couldn’t operate this way anymore because I worked in a school where some parents didn’t have the means to take care of their children and really, truly,  were doing the best they could at that moment.  It was just difficult on me.  Emotionally, it had taken a toll long before now.

I could tell you the series of ridiculous things that happened to me up to this point in my life, but it doesn’t really matter right now.  All that matters is right now, I am trying to find the thankfulness in life.  Not just go through the motions.  I also know that money does not solve problems, I get that, I do, but sometimes I wish we had some wiggle room.  I feel responsible for my decision to stop teaching full-time because there is no longer any wiggle room…if there truly ever was.  I have to weigh decisions carefully on what we spend money on, and when I make a poor decision, I beat myself up.  Even going to the doctors cost me money I can ill afford to pay when they want to see me back in 6 weeks…at $35 a trip because it’s a specialist.  All I freaking see are specialists.  With 4.5 diseases that most people have never heard of I was told by one doctor, “It’s like building a house.  You wouldn’t expect the plumber to know about carpentry, right?”  Meh.  I see your analogy and I raise it a “I am trying to be seen in one place so this doesn’t cost me ridiculous amounts of money all the time!!!” stare.  Because sometimes, I just can’t respond to people.  The words that would come out are not nice.

So, the point to this entire erm rant?  I get you Wayne Brady and your breakdown.  I love you man.  I really do.  I love you Robin Williams and I miss you.  But I get you too.  But let’s start talking about “Fappiness” more and how it’s okay to feel this way at times.  Let’s talk about this and bring this out in the open.  Stop trying to fix it.  Just let it be.  And talk about it, until it’s okay to be fappy…

Fappy

 

The Thief of my Youth.

The Thief…

I remember when it first started. Old age, I thought, was a bitch. Little did I know that it was not, in fact, normal aches and pains. The first sign was when my shoulders started tensing up. They hurt so bad I could not cross my arms in front of me. Each day I would get up, put on my “happy face” and work a full day with 18 tiny people staring at me. I sang songs, songs about being happy. I had to force the pain down each and every day. Doctors couldn’t help me. It was just a flare. Bursitis said one. Arthralgia with a question mark wrote another. Cortisone shot said yet another. So I agreed. I had the shot and was in the worst pain I have almost ever felt in my life. It froze my shoulder up even more and then I cried each time I moved. I had to prop my arm on a pillow that night. I couldn’t even change out of the clothes I was in.

Over time, the pain moved to my spine. It started at the base of my neck and went down until I could feel every single vertebra in my entire spine. I was never aware of my bones before. They were simply there. The pain radiated out to my shoulder blades. I became angry and more distant with people. I was coming home from work and just withdrawing into my own shell. I would put blankets all over me because I could not get warm. I had heating pads on my back and shoulders. I’d try to do things, but simply couldn’t function after working all day long.

Whenever I tried to sleep, I could feel the bones. I would toss and turn and try to get comfortable. By the time I got to sleep, my husband was bringing me coffee. Coffee was the only way to get me up in the morning, and yet it felt like I had just gone to sleep. The cycle was horribly draining on my well-being. Not just physical, but mentally as well. There was not one person I could tell this to. Not one. Do you know what they had called me at work? Mrs. Happy. I was Mrs. Freaking Happy.

I’d alternate between praying and being mad at God. He knew what I was going through. He knew, and yet there were no answers. None. One day a co-worker slapped me on the arm and I almost slapped her across the face for touching me. Yup. I did. It took all the self-control I had to say through gritted teeth “Never, ever touch me again.”   We were not particularly close, and she had a habit of thinking things were funny and slapping my arm like I agreed. The only thing I thought was funny at the moment was watching her face as I explained how much what she did hurt. Yes, it wasn’t nice, I know.  Pain doesn’t care.

Around that time I realized I couldn’t work around people and keep up appearances. That’s when a plan starting forming in my head that I needed to work on getting better if such a thing was possible. The pain, fatigue, and doubt about whether I would be able to hold down a job with my amount of pain wore me down. Every night I would cry. If I wasn’t crying, I was pretending I was fine…until I started getting sick to my stomach almost every single day. At that point, I could no longer pretend I was fine. Food was making me violently ill and I had not been allergic to any food before in my life. A thief came in and stole my youth. I looked like a 20 something year old healthy adult with the body of an 80-year-old woman on the inside.

This was how my story started, but by God it wasn’t how it was going to continue.  If this sounds like you, please read more under the search term Health.  If you want to start tiny baby steps towards your own change, check out 4 Weeks to Wellness.

 

Pain

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Thoughtful Thursday…

For those of you who are new to my blog, I want to say welcome.  I started this blog as a way to release some of the pent-up anger I was feeling over my health conditions.  I knew others out there were probably feeling the same way I was, but at the time, I had not met anyone at all with the same combinations of diseases I had.  As a matter of fact, if you go way back into my blog archives when I talk about the early years of my diagnosis, I did not meet anyone for over ten years or more who even had one of my conditions.  It was a very difficult time in the beginning because I had no idea what was going to happen.

So I tied this blog concept into my love of Tolkien, the fact that as a hard-headed youngster I actually burned my hand reaching for the stove (I thought there was soup there…wanted to help), and then right before my wedding, my skin started to blister and my hands felt like they were on fire all the time (PCT).  There have been many times when I felt some sort of resentment towards others as they lead their “normal” lives.  I kept it inside and “stuffed” it down.  I did not explode on others, but I was not nice to people I cared about.  The thought was, they will forgive me.  Okay, so maybe I didn’t consciously think that way, but looking back, I know it was easier to push them away when I was hurt.  Much like a wounded animal.

Now, 17 years after meeting my future husband, I can say he is finally learning this and I am learning erm or trying not to react to my pain.  Some of what has helped me is as follows:

  1. I met a doctor who actually said, “If you don’t like the job I’m doing, you can fire me.”  Technically he is my chiropractor, but no one has ever told me that.  So it counts.
  2. I surround myself with positive quotes, positive people, and positive things.  If I can’t, I will leave a situation.  It took me a while to realize I didn’t have to stay to make a point.  I could leave and that would be a good point too.
  3. I avoid situations I don’t want to be in.  I am learning to say no more often.
  4. I found a person who has some of the same theories I do about Hereditary Hemochromatosis.  I have been saying for over 15 years that if this is genetic, we don’t know enough about what that could mean.  You are messing with genes here.  Here is his link as he has been researching a bit longer than I have.  Leslie Johnston, D.V.M.  He has put together a list of things he thinks is linked.  Yes, it seems like a long list, but number 117 sure is true.  My family would agree.
  5. My porphyria friends.  Where would I be without my tiny band of porphyria friends.  Such a nasty disease and you all cope as best you can.  I know that I have the cutaneous kind, but we are still a band of fighters.  Each of us fighting our different kinds.
  6. My Hashimoto’s diagnosis (thyroid) is still one of the things I don’t understand, but eating on a restricted, mostly clean, mostly gluten-free diet improves some things, and for that, I thank my husband for being supportive.  We walked away from the most delicious looking bread just because he knew it would cause me stomach issues.
  7. A whole new world of friends on The Burned Hand’s Facebook quote sharing page.

So, I have not forgotten all of you, my dear friends, who are fighting disease.  I might not post as many updates as I once did, but I promise you, if I come across some research that will help, I will let you know!  This post is just to let you know I am thinking of you.

One More Round

Old nonsense…

Okay, health groupies.  I know you’re out there so this one’s for you.

For any of my friends who suffer from one of the invisible diseases, I just want you to know that I feel your pain…literally.  I have been contemplating writing this post all night because I am in such a mood.  I had another doctor’s appointment today, and while I won’t go into details, I just want it to stop.  Tonight I have been contemplating how much I dislike all you “normal” people.  That’s right.  I said it.  I guess I never thought it would come to that.  I remember a post almost two years ago that a friend wrote.  She said she “hated” the normal people.  I thought everyone on her friend’s list was going to be upset, but instead they were so wonderful.  I had tears in my eyes.  They all told her it was okay to feel like that sometimes and that they understood.  She had every right to be angry and they knew she was tired of trying to fight.  I told her to keep her spirits up…until the day she passed away.

The truth is, we all go through times like this.  Whether it’s sickness, envy, pain, regret, or remorse there are times we all dislike someone no matter what the reason is.  A long time ago, a friend once told me it hurt her to see me so happy.  It took a lot of courage to say that.  I respected her for it and even though it sounds horrible, I understood what had been happening with her finally.  No one can tell you how you should think or feel in any given situation, so “Finish each day and be done with it.”  Emerson was spot-on…and if I have used this quote before it bears repeating.

“Finish each day and be done with it. You have done what you could. Some blunders and absurdities no doubt crept in; forget them as soon as you can. Tomorrow is a new day; begin it well and serenely and with too high a spirit to be encumbered with your old nonsense.”  ~Ralph Waldo Emerson

For my health groupies…

I haven’t posted a health piece in a while, but I found something many of you would find interesting.  I feel that it is important to stay in the know about whatever condition you have.  If you use the search button on my blog, you can look up things I have written about Hashimoto’s disease, porphyria cutanea tarda, and hereditary hemochromatosis, or the “Celtic Curse” as some have nicknamed it.  Even if you don’t have these conditions, it is always good to get regular blood work.  I certainly never dreamed at the age of 22 I would be diagnosed with PCT; however, it is what you do after a diagnosis that matters.

Phase one: you go through many emotions.  First, you think the doctor is wrong or some underpaid lab person has totally messed up your results.  Next, you do what the doctor says NOT to do.  “Don’t Google this disease until we are certain.”  Ha ha ha.  Yeah, that was funny.  As soon as I told my mom, between the two of us we had read everything there was written at the time on porphyria.  That was a fun evening.  Finally, comes the acceptance of the results.  You already knew that every symptom sounded like you, but sadly, you didn’t want to admit it to yourself.  You are now ready for phase two, living with the disease.

Someone posted this in one of my groups, and I think you will find it true…Health Central has an article on the top 10 things not to say to a Fibromyalgia patient, but it actually applies to all chronic pain/fatigue conditions.  Try not to wring the person’s neck when they tell you to get more sleep. Oh yeah, and for some of us, the part where someone says at least it’s not fatal, well it can be if it goes undiagnosed. We know you mean well.

“I’m exhausted trying to stay healthy.”  ~Steve Yzerman

Resilience…when did we lose it?

At some point in your life, you started to take things to heart.  You might not remember the exact moment, but you did not bounce back as quickly from things.  It could have been something that happened with your health (I understand), or perhaps just life’s stressful moments.  You no longer are able to maintain the buoyancy you once had in life.  In fact, there are times you feel yourself needing a life jacket and the water is only up to your knees.

How do you handle these times?  One thing that actually helps me is to offer advice to others.  It helps me to remember that I can make a difference in someone’s life and that they do count on me to bring them up.  It might work slowly at first, like putting swimmies on in a rip current, but it’s a start.  Help your friend see ways they can deal with this crisis and perhaps relate it to something you have been through yourself.  This actually reminds me of a song, so I think I’ll post it:

Natalie said it best…let our words build a shelter from the storm.  If you don’t have what it takes to be resilient in a situation and bounce back, talk to your friends about what is holding you back.  She also says “let me know what I can mend.”  I really love this song.  If you find yourself needing a dose of resiliency, let me know what I can mend, and I’ll do my best.

Get_up

“Inside of a ring or out, ain’t nothing wrong with going down. It’s staying down that’s wrong.”  ~Muhammad Ali

Summer of 1998

Porphyria and Survival

As I ended my last blog, I mentioned I had approximately 3 months to get “better”.  Let me explain. 

There is no cure, so my idea of getting better was to get my condition under control.  Maybe you have never felt your life spiral out of control, but I can tell you that it is a scary feeling.  I believe in fate, destiny, and above all else God.  I started looking back at things that had happened to me over the last few years in college, and I realized that it could be worse.  When I said I knew I did this to myself, I did.  I started having beverages, let’s call it that, at age 15.  It wasn’t a secret.  I thought I was drinking “responsibly” as my parents knew.  I did not drive anywhere while drinking, but I hung with an older crowd, and then I went to Spain for a trip while in high school, and had my mom write a note saying I could drink sangria while on my trip.

In college, I pretty much did the same thing, and maintained such high grades I was asked to be in two honors fraternities, one service fraternity, one sorority, serve on the student council, become a student ambassador, tutor students, and take a class in Europe for a few weeks.  Sleep much?  No.  Who needed sleep.

All of this caught up to me I thought.  By my last year in college, I could sleep all day long.  My limbs felt heavy and I needed complete darkness.  I no longer wanted to get up and go to early classes, which was not like me.  I was tired beyond belief, and exhausted to my core.  Luckily, I had already met my future husband.  He let me sleep and took care of me.  We went out less, and stayed in more.  I had no idea that was just what I needed, and that my other lifestyle was literally killing me.

Now, back to the summer of 1998.  The dermatologist sent me to a new doctor.  One place I didn’t really want to go, but apparently, the only place that help me.  The local oncologist who just happened to be an expert hematologist as well.  I could drag this out and tell you about this in much more detail, but I won’t.  I am not a medical professional; I am merely telling you this from my perspective.  It’s hard to unwrap your feelings when you have suffered the loss of someone close to you from cancer.  Going through those doors into that building was very difficult.

Then I went back to the lab, where big signs were posted about no children beyond this point.  I guess they didn’t mean me.  I follow a nurse to the back, where everyone is looking at me.  Yes, I feel that way because I have a full head of long hair and I am young.  I sit in a reclining chair near someone, and I want to cry.  Not for myself, but for them.  I am not thinking of myself at all, and think how ironic it is that I am here.  No wonder my grandmother never let anyone go with her.  We are strong women.  I can do this.

A nurse comes over and sticks me with a huge needle.  One of the biggest and most painful to slide under my skin, but I got this.  I am fine.  Going to get “better”.  She hands me something to squeeze and the blood starts flowing into the bag.  I watch with mild interest until I get light-headed as it apparently left pretty fast.  One pint down, many, many more to go.  I get crackers, some soft drink, and she puts my feet up.  This is how it goes every single week.  One pint a week.  Lab results, Doc coming to say hi, getting to know the office staff, and nurses by name.  There was a time when I had to get in the bed for one of my visits as I just didn’t want anyone around me anymore, and I asked if I could just please have the quiet room.  I was new to all of this and got tired of people looking at my pint of blood since I was the only person having that done in a room full of people getting clear fluids.  I think that was the time I almost fainted.  I kept going anyway.  This was not going to stop me.  I got this.  I can do this.  If my grandmother could fight, so could I.

During all of this, my mom took me to find gloves so I could sleep at night.  We bought every cream on the market to stop itching and none of it worked.  I slept with gloves on my blistered hands.  I looked at the scars on my arms and prayed they went away in time for my wedding.  Oddly enough, I modeled my wedding dress after my grandmother’s so it had long sleeves and a long veil.  In the hottest month of the year, I picked a dress like this before my condition came out.  Things happen for a reason.

Slowly, the phlebotomies started working.  Since there is no cure, you must have pints of your blood removed throughout your life.  Since this is getting longer than I intended and I have shared more than some of you wanted to know, I will end by saying I made it to my wedding day with no blisters on my hands.  If you looked closely, you might have seen dark patches where they once were, but no blisters remained.

Two years later, we had a healthy little girl.  Sometime during this time period, the doctor realized my iron levels were still abnormally high.  I would be tested again for a new disease.  One that made all the pieces fit into place.  But that’s another story.

“Life is not easy for any of us.  But what of that?  We must have perseverance and above all confidence in ourselves.  We must believe we are gifted for something, and that this thing, at whatever cost, must be attained.”  ~Marie Curie