Graves Disease.  Sounds very, very grave indeed.

And it can be.  But there are good, solid treatments for it these days.  Though none of them promise a cure and the truth is once you’ve chosen one of three treatments available you are destined to always need to take medication for the rest of your life and get regular blood work on a month to month basis.  The symptoms of this disease are no fun.  The treatments to help spur remission are also dangerous:  Radiation to kill your thyroid, anti-thyroid meds to help slow your thyroid down or a thyroidectomy to remove the thyroid completely.

I am in a stage of disease where I am still too unstable to choose radiation or surgery so I take daily medication (Anti-Thyroid Drugs = ATD) to try to bring my thyroid levels to a normal thyroid state.  This can actually make a person hypOthyroid, meaning your metabolism is now in slow motion mode versus the hypErthyroid state of full speed ahead.  Neither feels good and really the only way to feel healthy is to have normal thyroid hormone levels.  It’s a very hard thing to do and it takes a lot of time.  Years in many cases.  I’ve been fighting since 2008, though I suspect I’ve had Graves disease since my early adulthood, as I had heart issues and had to have a very minor heart surgery to normalize my rhythm (another symptom of Graves).

All of this said – My IRK comes from the lack of awareness about this disease and how people with auto-immune diseases are treated in general.

People with cancer, though they fight valiantly to save their own lives – which is what anyone does when given a diagnosis of the life altering variety – have immense support behind them.  They are deemed heroes and parades are given, ribbons are worn and heads are shaved all in the name of fight the good  fight!!  Many times the cancer is aggressive and it kills the person afflicted but even more many of these people recover!  They go on to lead normal, active,  healthy lives but now get to bear the hero badge.  They get the pats on the back and the thumbs up and, “wow, you’re incredible!”

I just wonder sometimes – where is the support for the people that are fighting a daily battle to get out of bed, to make breakfast, to get to there appointments on time and to try and not isolate themselves because they are in such ill health that they can’t be what everyone else needs them to be.  People actually say things that shock me – like, Oh, isn’t that the disease that makes you lose a ton of weight? Sign me up!

Yes, sure you can have it please – because guess what?  You also can lose weight sitting on your ass doing nothing because your heart is working so hard to pump because it actually has been told by your brain that you need it to pump harder.   You shake, you feel manic, you feel panicked and pissed off and you cannot sleep even though you can barely keep your swollen eyes open, you are hot in 20 degree weather and you have vertigo (motion sickness) because your eyes are moving and the tissues are swelling.  So yes, please do take it from me.  Enjoy the weight loss because it will one day end.  Eventually, once you’re diagnosed and put on medication (that can leave you with no immune system at all by the way) you will start to gain weight.  You will continue gaining weight because you will still be too tired to do anything but sit on your ass.  You will not have run a marathon, but your body won’t know that.  You will have aches and pains and feel like you’re 89 years old and oh this is the fun part – your neck will start protruding.  Live in a winter climate?  Now you have a permanent scarf because the enlarged thyroid gland is there just to keep you warm!

If you don’t understand a disease that someone you care about has – learn about it.  Go to the library or even more convenient….google it.  Find out how you can be helpful because even though you may not have seen your friend in some time….I bet they could use a little love and support.  No, it’s not cancer – but it doesn’t need to be.  It’s still HELL.

Here is a good place to start if you want to learn more:  http://www.endocrine.niddk.nih.gov/pubs/graves/

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HS – much easier – is a skin disease.  It is generally genetic but may also occur in people as a side car to other diseases – like Graves Disease (which I have).  My mom, brother and grandmother also had/have it – so I have the added pleasure of sharing stories and symptoms with my family.

Basically,  people with HS have issues sweating – it’s difficult for them/us and they/we can easily over-heat .  Especially as the disease progresses and creates scar tissue where we should be sweating instead.

How is this scar tissue created you ask?  Boils.  Oh yes indeedy.  Boils.  Fabulous little red lumps under the skin that morph into puss filled sacks of holy painful.  Sometimes they sit under the skin for a few days, sometimes a week or more.  Usually you will have two to three or more lumps/boils at a time.

This condition is extremely painful because while the monster is growing – the skin around it stretches, gets inflamed and simply does not have the space needed to expand and yet, expand it does.

The other wonderful thing about this disease is that it follows  your sweat glands around.

Where do we typically sweat?

Arm pits, groin – and various crevasses near said groin, and under the breast region.   All intimate and embarrassing places to have any issues, let alone red, flaming lumps OR juicy boil issues.

I am fortunate enough to have an amazing guy that finds humor in most of life and so we can giggle about gross things and he isn’t squeamish in the least.  That said – HS comes with a lot of stigma – fills its sufferers with low self-esteem, depression, anxiety and loneliness – not to mention the actual physical pain and over-heating fun.

There aren’t many options for us.  We can have surgery to remove the repeating boils ( they refill over and over and spread under the skin, creating honey comb like tracks) , we can have steroid injections before the lump becomes a boil to help diminish the length of wait time before it appears and drains (sometimes the injection will stop the formation in its tracks if it’s a new area) or we can use hot packs to help bring it to the surface and hope it drains quickly.

There are some medical trials that are being conducted but it’s a very small group and there isn’t a lot of word being spread because HS has such a stigma attached to it.

Complications can include staph infections and cellulitis.

My point in sharing all of this HS info?

First and foremost – people should know it’s out there and if you have symptoms – you should see your doctor.

More importantly – If you see someone – whether a friend or stranger – that has a boil or scarred armpits – don’t say, ” Ewwww! Gross!!”  They just might have HS and it only adds to the shit they already have going on in their head.

Be nice – ask questions and quit assuming things about other people.  You haven’t a clue.

  • Diagnosed with Depression at age 17
  • Diagnosed with Supra-Ventricular Tachycardia at age 19 – Had ablation in 1995
  • Diagnosed with L4-5 L5-S1 Disc degeneration at age 21 – Had first spinal fusion in 1999
  • Diagnosed with failed fusion – left to my own devices at age 22
  • Diagnosed with chronic back pain  at age 24 – offered narcotics – opted for Ibuprofen, Ultram and Valium
  • Diagnosed with Anxiety Disorder at age 25
  • Diagnosed with failed back fusion at new clinic in 2003 – had repeat and total fusion in 2004
  • Had metal rods removed in 2005
  • Had Bone Growth Stimulator removed in 2005
  • Diagnosed with Chronic back pain after successful fusion in 2006 – Opted again for Ibuprofen, Ultram, lidocaine patches, Valium
  • Diagnosed with Hidradenitis Suppurative (HS) in 2006 – no cure, only maintenance injections and excision’s to remove damaged and scarred skin
  • Diagnosed with Diabetes Type 2 2008
  • Diagnosed with Graves Disease in 2008 – as of 2010 am in remission
  • Diagnosed with Barrett’s Esophagus syndrome – pre-cancerous changes in the esophagus due to GERD (probably spurred on from all of the Ibuprofen)
  • Diagnosed with chronic tibial tendonitis and flat feet in 2008 – orthotics after casting – repeat treatment – steroid injections – more casting – new orthotics – 2011 still unresolved
  • Diagnosed with Allergies 2010 – cat ( I have) – dust mites (we all have) and various other exciting things like grasses and trees
  • Diagnosed with Allergic Asthma in 2011 – use Nebulizer daily along with maintenance drugs

I am now 35 years old.  I have  a lot of health issues all at one given time.  I am not hideously obese, though I am 40 lbs. over weight.  I am currently dealing with Chronic pain in my back, legs and feet.  Asthma just about got the best of me a few weeks back and I am now doing really well.  My Diabetes was great until the Predisone made my blood sugars sky-rocket into the 400’s.  I have an infection and am taking antibiotics for my HS skin disease at the moment.

All of these things – these medical conditions and all the medication I take daily – they take a toll on a person.  People ask how are you? What do you say?  I say I’m good. How are you?

People ask, why are you on disability?  I say chronic pain – they look skeptical and don’t ask anything more and I give nothing more – the list is ridiculous.

There is a lot of stigma attached to people on disability.  Especially if you’re not using a cane, a wheel chair or a seeing eye dog.  It’s embarrassing when I go to a new doctor and the nurse wants all of my prescription medication listed – It’s embarrassing when people can’t visibly see how much pain you’re in and so assume you’re pulling one over on the system.  But in that embarrassment I make a choice not to go down the list of why I am disabled or how much I’ve been through.  I want no pity and really I want to be “normal” and not a sckgrl.  I want to be rollerblading and hiking and working and going to school and having children and traveling and planning a wedding and not worrying about losing my health insurance.

Today I complain because tomorrow I won’t.  I won’t complain because really, where does that get me?  How does that make me look in the eyes of others?  What does that do to my family?

Today I complain because sometimes – when I’m alone at night and my guy is sound asleep I feel very lonely.  I feel very frustrated and spent.  So this is my outlet.

It’s funny though with all the bad, amazing things have come to me.

LOVE.  Lots of love, knowledge, advocate  skills, new interests, understanding and empathy of others and on and on.  I have learned so much in these 35 years and am still learning and growing.

I’d say though that it’s time I caught a break.  I’m tired.  As they say – Sick of being Sick.

End Complaint.

What is a fuzzy you ask?

Simply put, a fuzzy is a perfectly formed ball of fuzz.  The material cannot be too soft, like cotton ball fuzz or unmodifiable, like sock fuzz.

Some fuzzies can be as small as the tip of a pencil and some can be as large as the tip of my pinky, but all must be round and rollable. (it’s true, fuzzies and rollable are not “real” words)

I acquired this habit when I was very, very young.                                                                                                                                            I think I may have pinpointed the cause for my fuzzy rolling habit.                                                                                                             I have a memory of sitting on my Uncle’s lap.  He was a jolly feller and had quite a belly …  I recall checking out his bellybutton and realizing that there was something in there!  Very exciting!                                                                                            As children do, I curiously dug in and pulled out some fuzz!  Over the years when trying to figure out why fuzzies? I’ve concluded that the reason I have this memory is because it is my defining fuzzy moment – The moment I turned to fuzz for comfort.

I can roll many fuzzies  at one time.  Not just between two fingers but spread out between all of my fingers.  You know those cool coin finger roller people?  They can roll coins through their fingers a mile a minute and never drop the coin?  I can’t do that.   But I can roll fuzzies.  It’s impressive.

When I go on a trip,  in a car or by plane, I pull fuzz from my secret stash of perfect fuzzy making material and stick it in my pockets, purse, make-up bag … where ever I can get to it quickly.  If I’m in the car I usually pull out a little hunk of fuzz and keep it in the side of the door where I can easily access said fuzz. Convenience and accessibility are key in a fuzzy emergency.

Why do I roll fuzzies?

Well, it’s an anxiety reducer.  It’s smaller than a stress ball, doesn’t hurt like rubber bands must, it’s free, and it works for me.

Since I’ve been doing this for a very long time many people know about my little fuzzy habit.  I don’t mind.  Nothing to be too embarrassed about.  The only time I cringe is when the furniture gets moved…that’s always a little breath-taking.  How did ALL of those fuzzies end up under the couch??

I’ve often thought that it would be fun to take all the fuzzies I’ve ever rolled and put them in a tank…like those “balls of fun” tanks and swim around in ’em.  But, maybe that’s a little too strange, bizarre or what have you.

We all do odd things to give ourselves comfort.  Rolling fuzzies is just one of mine. 😀

It’s a funny thing.  You never think it will happen to you.  You know it’s out there, happening every single day, probably every second of every single day.  Somewhere in the world, down the road and across the country…someone is going about their day or their evening and the next minute a tornado hits.  A hurricane, a lightening bolt of pure rage.

When it first happens you have to giggle a little.  You search every corner of your mind trying to find a logical answer.  It’s always amazed me how quickly ten different thoughts can race through my mind in a given second.  Shock is really the only simple way to describe it.

We were drinking home-made choke cherry wine.  It was more like a liqueur really.  The taste was awful, sweet and thick like syrup, but I liked the heat of it going down.

One minute we’re laughing and the next his glass is shattering on the wall across from us.  He’s grinding his teeth and his eyes are glazed and crazy.  That’s when my mind started racing.  Ten thoughts a second.  Where’s the logic in this?  Why is he acting this way?  Is he trying to scare me, only to grab me and hug me and tell me it’s all a joke?  Is he going to hurt me?  He would never hurt me.

Next moment I’m on the floor – still sitting in my dining chair but back to the floor- feet in the air and he’s hit me in the head with his head.  Did he just headbutt me? How did I get on the floor?  Should I be laughing?  Maybe I should laugh and then he’ll laugh and he’ll hold me and tell me it’s really just an awful joke.

Somehow I ended up on the couch.  I don’t remember crawling to it but I recall realizing that this mania, this crazy, enraged man was indeed not joking.  I became a statistic at that moment and it registered loud and clear.  I am one of the beaten.  Here we fucking go…

Kicking out a wimpy leg at your attacker is only going to make him want to hurt you more.  Don’t ever throw a kick or a punch unless you really mean it.  I loved this man.  I didn’t truly want to kick him I just wanted him to stay back.  Why would anyone want to hurt someone they love?

God was he quick.  There goes my foot…why did I kick at him?  Now he has my foot and he’s dragging me down the hall.  That was SO STUPID.  I could still be sitting on the couch right now if I hadn’t tried to kick him away from me.  What is that awful noise?  FUCK that’s loud.  Is that me?  Am I screaming?  I wonder if his dad can hear me screaming…it’s really late.  Where is he dragging me?  I think he might actually hurt me.

Now I’m up on our new mattress and again I have no recollection of moving from the floor to the bed.  I’m just there.

I move to the far side of the bed, away from him, close to the wall and facing the mirror.  God do I look scared.  Is that a bruise on my forehead?  Already?

He sits down next to me and pulls a knife off of the shelf.  He uses that knife daily to clean his pipe but I’ve never really noticed how long it is.

Staring at the mirror I see him and I see me and we’re looking at each other.  He starts smiling, so I smile a little…Could this still just be a joke?  Why is he smiling?  I feel something in my hand and move my thumb and realize at some point during this storm I grabbed my pepper spray.  He presses the knife to my throat and smiles his beautiful, perfect teeth smile.  I know in that moment that if I twitch he’ll slice my throat.  No pepper spray, in fact – no breathing.  Become invisible.  Look away from the mirror, if you can’t see him he won’t hurt you.

Next moment I’m on the other side of the bed, he’s still looking in the mirror – his delayed reactions give me hope – until I realize he’s lit a cigarette and has now grabbed my foot and is burning my sole with it.

Back to the floor, this time by my hair.  God he’s strong. Up the hallway we go again.  That awful sound is back.  I HATE that sound.  I’ve heard it on the news and in movies but not in “real” life.  Certainly not MY life.

I’m just a rag doll, his toy to do with what he pleases.  Getting away from him is not an option.  I’m tired and he’s got my neck in his hands.  Maybe if I go limp, if I stop fighting he’ll get bored.   He’ll  give up.  What does he want anyway?  Why is he doing this?  What did I do?

He’s gone now.  Back down the hall.  I’m alone and he’s gone.

What a fucking mess!  Chairs on the floor, table tipped over, shattered glass and wine on the wall and in the carpet.  Didn’t his dad hear anything?

Sitting there, alone on the couch assessing my damage; bruises and hand prints, scratches and burns.  What in Gods name just happened?  What do I do now?

Is he calling for me?  SHIT.  He’s yelling my name.  Why I go I don’t know, but I think it’s my propensity for curiosity.  I don’t know what just happened, why it happened and I have to go and see if he’s “back”.  Is it him or is it the monster.  I have so many questions.  Why I didn’t just run out into the night, far away and get help I’ll never understand.

He’s in bed.  Under the covers and he’s thirsty.  Not just thirsty actually, but hungry too.  That was QUITE a work out I would imagine.

While I’m nuking the Corn-dog and pouring the Mountain Dew it does occur to me that what I’m doing is slightly OFF.  I’m not exactly sure why I’m making him comfortable after he just finished terrorizing me…but I continue anyway.  Something else occurs to me as well.  I could kill him.  I could actually kill him right now and no one would blame me.  At this very moment I am bleeding and bruised and if I killed him it would literally be in defense of my life.

I walk down the hall, so slowly and quietly, listening to hear if he’s asleep.  I jump as he bellows my name again.

I get in bed with the food and help him take a sip and then he puts his head back down on the pillow.  He is REALLY exhausted.  Can’t blame him.

I put the Corn-dog to his lips and he opens his mouth and takes a bite.  Yes –  I’m feeding him, though that’s the last thing on my mind.

What if I pushed really hard on this Corn-dog?  He is in the perfect position for the food to go deep into his throat.  I bet THAT would hurt.  In fact, I bet it would block his airway!  I’m almost certain that he is so drunk and so tired that he wouldn’t know what was happening.  Sure, he’d panic for a moment but … only for a moment.  If I push it down deep enough I bet I could even tear his throat with that stupid little Corn-dog stick.  Anyway you look at it, he’s a goner.  Self defense.

Death By Corn-dog.

Of course… I didn’t do a damn thing about any of it.  No police report, no phone calls for help from anyone. I didn’t even tell until I removed myself from the mess years after that very first attack.

Ten years ago I was in an extremely abusive and dangerous relationship with someone who I couldn’t change.  I tried.  Believe me I did.  That is where we get stuck unfortunately.  First we are confused, we kind of like the attention we get when he is so incredibly sorry and kisses and rubs our wounds.  Then, when he grows out of that stage and goes back into asshole mode we have invested ourselves.  We will NOT quit until he realizes just how wonderful we are.

You can’t tell someone who’s in it to get out of it.  Telling someone what they should do when they are thinking irrational thoughts is not going to provide results.  I don’t think anyone could have helped me.  I had to find my own reason to leave.  Some women aren’t lucky enough to last as long as I did.

I’m in a beautiful, healthy and loving relationship now.  It took three years for me to be ready to trust again and when I was healthy, love found me and I couldn’t be happier.

Still though – occasionally late at night, when I can’t sleep, he creeps back into my head.  Not for long though.  Just long enough for me to stab him to death with a Corn-dog.

I have always been a sick girl…from the time I can remember.  Third grade for instance.

I’m sitting at my desk and I have 20 other kids surrounding me, each at their own desk.  I have a cold – which is a common theme in my life at age 8 – and my nose is backed up.  Can’t blow it because that would be way too embarrassing.  Everyone will look at me and some people will think I’m super gross, so, yeah, no blowing of the nose.  Instead I will keep sucking it up into my sinuses and swallowing it down the back of my throat.  Lovely.

Eventually, because there is no such thing as bottled water yet and we’re not allowed to  go to the water fountain until class break (cruel school rules), the snot starts to thicken.  It’s about the consistency of the glue I just used to write my name on my art project.

Here comes the good part.  After one big vacuüm suck of snot I realize I cannot breathe.  I cannot cough because if I do I will barf – and that’s much more mortifying than dying in class from a snot covered windpipe.  So, I’m in a quiet state of panic and I’m grabbing tightly to the edge of my desk – sweating  profusely – I’m certain my eyes are going to pop out of my face – I start swallowing – swallow – swallow – swallow – I can breathe a little bit so I open my mouth and suck in a small amount of air so I can feel how much snot is still pasted over my trachea.  It feels a little better, my hands start to slowly let go of the desk and I keep swallowing – swallow – swallow – swallow – clear throat – breathe – swallow .

Finally all of the gluey snot has made it down into my stomach and I can breathe again.  I learn nothing from this horrific experience because I will put myself through this ritual hundreds more times until I turn 16 and don’t care what people think anymore.

Not only was this the beginning of my relationship with anxiety but it also spurred on early age hypochondria.

I really thought I had breast cancer when I was 11 because my flat chest started to grow and it was painful…MUST BE CANCER.  I remember taking out my moms nursing book and finding the page on breast cancer and reading it over and over again.    I had ALL of the symptoms!  Lumps and Pain.  I worked myself into such a state of panic that one day I  told my dad I had to show him something.  I brought him upstairs to my bedroom and pointed to the page and said, “I think I have THAT.”  I couldn’t say the word breast.  Too embarrassing.  He just looked at me with his sweet eyes and asked me why in the world would I think I have breast cancer?  I told him I had the symptoms and he just said it was normal at my age to have pain and “lumps”.  Poor guy, I’m sure he was much more uncomfortable that I was.

Another time I had, as most kids have, a show me yours – I’ll show you mine phase with a girl around age 10.  AIDS was beginning to be prevalent  in the news at that time – the AIDS quilt came to my town and we learned about AIDS one day at school.  I had to tell my mom that I REALLY was quite positive that I had AIDS.  Which then led to the awful explanation of WHY I thought I had AIDS.  She  said it’s impossible and to stop playing that game with my friend.

So I did.