2015 is a beginning, not an end.

So much and so little to say. I’ve stayed quiet mostly this year. If you don’t have anything good to say, right?

My life is a lot different from the last time I posted but I would rather save health related stuff for another time. The health thing has been difficult to write about. There has been lots of stages, sort of like the stages of grief or something. So yeah, deep stuff. Save it for later, right now I just want to blather on.

I’m trying to finally catch up on music, after how many years of stagnation?!? It’s sad. I guess I started getting lax about everything after a certain traumatic life event. Pretty much anything I did, I had to make myself do it. I mean like, some serious willing myself to move and do anything that didn’t absolutely have to be done. It’s been six long years. I’ve had moments where I’ve snapped out of it. Did some things that were pretty impressive for me. But largely, I have been just existing. I’d like to change that. I’m still not “well”, but I’m at the point where I have learned enough about what I need to do and what I shouldn’t do.

Some things have been cut out of my life, literally and figuratively. I’ve chopped my hair off. It has been more therapeutic than I imagined it could be. I’ve had short hair before but somehow it feels very new to me. Maybe because it reminds me of the person I used to be, I CAN change again? I deleted my Instagram account with all the real-life people that are constant reminders of the past and I started a new anonymous one. Just for silly posting whims and following trends in music and fashion, etc. Is it wrong that I enjoy looking at pictures from people I don’t know more than people I do? Its has nothing to do with how much I love the people in my life, honestly. I just hate that the simple act of pushing a send button becomes a substitute for individual human interaction. I found it demoralizing…if it’s just random pictures from people I don’t know, that element does not exist. And when I post something, it can be what I want it to be. Just a picture, a simple stand alone statement. No background knowledge of me, judging who I am or what I mean with every post. Not a call to all to take notice. No disappointment when no one does notice either. Then there is the everlong attempt to push out the negative and the constant guilt and to quit letting others make me feel guilty. The person I am is not the person I am striving to be. The person I am is not bad because of my personal failures. Failures are the building blocks of success. I’m trying to see it that way.
Chopped
I am hoping for some really big things in the next year. For one I want to find the type of exercise I love and that will make my body sing and feel good again. I want to listen to more music and make music again. Yes, I am going to play my guitar and hopefully pick up at least one more hobby. I would like to get back to working outside of the home again. I need to see people. If I can’t work, at least volunteer. I want to meet new friends and reconnect with my old ones. I want to achieve our family goal of moving back to my home state. We all want and need it, badly and in different ways individually. I need the sun and the warmth. I need to feel my feet sinking into the earth every day and breath in salty ocean air. Somewhere where the winter won’t kill me, inside and out. 2015 is a beginning, not an end.

Morrissey’s unwitting tribute to Autoimmune/Chronic Disease

Or was it? I really have to wonder…

(Morrissey/Alain Whyte)

I’m doing very well…
I can block out the present and the past now.

I know by now you think I should have straightened myself out.
Thank you, drop dead.

Something is squeezing my skull,
something I can barely describe.

There is no love in modern life.

I’m doing very well…
it’s a miracle I even made it this far.

The motion of taxis excites me,
will you peel it back and bite me?

Something is squeezing my skull,
something I can barely describe.

There is no hope in modern life.
Something is squeezing my skull,
something I can’t fight.
No true friends in modern life.

Diazepam (that’s valium)
Tamazepam… lithium,
…HRT, ECT …
How long must I stay on this stuff?

Don’t gimmie anymore, don’t gimmie anymore,
don’t gimmie anymore, don’t gimmie anymore!
PLEASE DON’T gimmie anymore, don’t gimmie anymore,
don’t gimmie anymore!

You swore you would not gimmie anymore, don’t gimmie anymore…
Don’t gimmie anymore, don’t gimmie anymore!
Please don’t gimmie anymore, don’t gimmie anymore, don’t gimmie anymore !

You swore you would not gimmie anymore!
Don’t gimmie anymore,
don’t gimmie anymore,
don’t gimmie anymore,
gimmie anymore
gimmie anymore
gimmie anymore
gimmie anymore
gimmie anymore
gimmie anymore
gimmie anymore

OH, YOU SWORE
you swore!
you swore!
You swore you would not gimmie anymore,
gimmie anymore
gimmie anymore
gimmie anymore
gimmie anymore
gimmie anymore
gimmie anymore
gimmie anymore

lyrics from http://www.passionsjustlikemine.com/lyrics/moz-sisms.htm

Coming soon…Why Morrissey has Leaky Gut/Autoimmune Disease

800px-Medicine_Drugs.svg

My Doctor told me Armour Thyroid has GLUTEN in it!

No, not mine!  Thank God, because he prescribed it for me and at the same time told me that people with Hashimoto’s Disease should be Gluten Free!   But this is something I was told today, and it instantaneously set off alarms and I set out to prove their doctor wrong.   Cause I’m a jerk like that!! ;-)

As far as my research and my feeble little mind can take me…NO,  Armour Thyroid DOES NOT HAVE GLUTEN in it.  But just to make everyone happy, lets dissect some stuff!  This doctor recommended Nature Throid as a suitable substitute for the evil glutenous Armour Thyroid.  From what I found, speaking from an allergen perspective, the big difference between Armour Thyroid and Nature Throid is that Armour has corn derivatives and Nature Throid has lactose.  I’ve read that either does not contain enough of said ingredient to induce reactions in people with allergies to them.  But with the caveat that there is always a small subset of people that are just that sensitive and will react.

Now I guess the question that we are facing is “Does this doctor consider corn gluten to be the same as the gluten in other grains?”  Most experts say no.  Most sources agree that corn gluten does not even exist and that “corn gluten” is just a term to describe its protein/amino acid chain that produces a glutenous quality.  I cannot find a SINGLE source that says corn has gluten and should be avoided in a gluten free diet.

However, when researching autoimmune diseases and diet protocol there is information out there that states that some people with autoimmune diseases can be sensitive to “Corn Gluten” because it may be similar enough in molecular structure to standard grain gluten that antibodies cannot tell the difference.

See this well respected source on Autoimmune Diet Protocol (AIP):
http://www.thepaleomom.com/2013/03/gluten-cross-reactivity-update-how-your-body-can-still-think-youre-eating-gluten-even-after-giving-it-up.html

This is one of those things that has to be up to the individual.  But the fact is that corn has always been considered naturally “gluten free” for people who are allergic to gluten and for people with Celiac Disease.  The only thing that has changed the way anyone thinks about this is autoimmune antibodies.   And who knows what science will discover next as to what antibodies will attack!?   A true Autoimmune Protocol would at least for a period of time exclude anything with gluten, corn and dairy (among MANY other things).

So then what do you do?  There are compounding pharmacies where you can get almost anything made without fillers and extra garbage.  I don’t know how easy it is to get that prescribed though.  My guess would be to tell your doctor you are worried about allergens and just ask for it.  There is no reason for them to deny you….but there’s also no reason for a lot of the things our doctors do and say.  Let me stop there.

So this is just some of the research I did on the subject that I found useful.  Maybe it can help others facing similar questions.

LINKS ABOUT AND INFO ON INGREDIENTS:

http://www.thyroidpharmacist.com/1/post/2013/06/is-your-medication-gluten-free.html
(Izabella Wentz is a Pharmacist, Doctor AND Hashmotos’s Patient.  Her site is an excellent resource for Thyroid patients.)

STRAIGHT FROM THE HORSES MOUTH:

Armour® Thyroid (thyroid tablets, USP) Rx only  (Rev. August 2012 DESCRIPTION)
Armour® Thyroid (thyroid tablets,USP)* for oral use is a natural preparation derived from porcine thyroid glands and has a strong, characteristic odor. (T3 liothyronine is approximately four times as potent as T4 levothyroxine on a microgram for microgram basis.) They provide 38 mcg levothyroxine (T4) and 9 mcg liothyronine (T3) per grain of thyroid. The inactive ingredients are calcium stearate, dextrose, micro-crystalline cellulose, sodium starch glycolate and opadry white.
(From: http://www.frx.com/pi/armourthyroid_pi.pdf )

FROM MERCOLA.COM ON THE OTHER INGREDIENTS OF ARMOUR THYROID:

Calcium Stearate is derived from beef tallow
Micro-Crystalline Cellulose is derived from wood pulp
Sodium Starch Glycolate is derived from potato starch
Opadry White (titanium dioxide)
(http://articles.mercola.com/sites/articles/archive/2000/03/12/armour-thyroid-ingredients.aspx)

INGREDIENTS FROM NATURE-THROID WEBSITE:

Nature-Throid® (Thyroid USP), micro-coated, easy to swallow with a reduced odor, for oral use are natural preparations derived from porcine thyroid glands (T3 liothyronine is approximately four times as potent as T4 levothyroxine on a microgram for microgram basis). They provide 38 mcg levothyroxine (T4) and 9 mcg liothyronine (T3) for each 65 mg (1 Grain) of the labeled content of thyroid.

ABOUT NATURE THROID’S INACTIVE INGREDIENTS:

NATURAL DESICATED THYROID INGREDIENTS/COMPARING BRANDS:

http://www.stopthethyroidmadness.com/armour-vs-other-brands/

A GENERAL GOOD RESOURCE ABOUT GLUTEN FREE MEDICATIONS:

http://www.glutenfreedrugs.com/list.htm

Realizing my Mental Health is linked to my Physical Health –Because, well…ME (PART FIVE)

So here we are, it’s been almost exactly a year.  A year since my pain, mood swings and raw, Eczema-ridden hands became too much and I gave up my job.  The physical pain was everywhere, I didn’t even know what to think of it at this point.  But my mental pain was even worse.  Giving up my job was my last link to the outside world.  Even though I was going through too much to enjoy having a job, giving it up felt like giving up on life.

I had already lost so much at that point.  My closest friend and gym partner, that was pretty much my only motivator, had recently moved away.  She was also someone that didn’t treat me like I was lying when I told her how I felt.  Even though our life struggles were not the same, she understood that you don’t need to understand exactly what someone is going through to be supportive.  We needed each other and I pushed myself physically because she needed me too.  We were there for each other every single day…and then she was gone.  I know I didn’t lose her, she is still there for me.  I’m a big girl, I should be able to carry on.  But in my case, not having someone like that to keep me on the path, I really lost myself.  Without anything to ground me, facing my heath was too much.  I retreated, only coming out to make dinner (sometimes), or if my Mother wanted me to take her out, because how do you say no to your Mother?? –And other than that, only things that I could not come up with a viable excuse to get out of would I drag myself to do.

Which, BTW, I became very good at excuses.  Feeling like utter trash all the time can make you a really good liar.  Or at least it feels like I’m a liar.  Having to say “I’m sorry, I just can’t _______”  time after time, makes you feel so…much…worse.  That is the peculiar thing about illnesses no one can see.  You start to question yourself, especially without a clear diagnosis that is accepted by the medical world.  Am I really too sick to go out tonight, or do I just not feel like it?  You start believing the sceptics and you are consumed by what people must be saying about you behind your back.  You become paranoid and bitter, everyone becomes your enemy.  Everybody hates you…and its all your fault.  At least that’s how it feels, so you retreat even more!

I would have spells, where I would be so disgusted with myself, I would get angry enough to force myself off the couch.  Sometimes I would hop (more like) flop onto my elliptical, sometimes I would make the 30 minute drive to the gym to meet my husband.  Oh yeah, I totally have a family through all this.  But I’ve shut them out because of the guilt involved in being the big let-down-of-a-human-being I had become.  I’m hiding out and hoping they will forget about me.  When I would leave the house to meet my husband it was only that guilt that got me there.  I know that if I’m inactive its discouraging to him.  For some reason we love each other and want to spend all of our free time together.  If I don’t meet him at the gym, he wants to come home and be with me instead.  More guiltI’m just full of it, so full sometimes it seems there’s no room for anything else.  Except pain, there’s always room for that.

We moved out of state this year.  We lost our insurance for almost five months, and in that time I became more and more physically ill.  There were times I wanted nothing more than to scream for the ambulance to come and get me.  But I am nothing if not stubborn, so I refused.  Even though my husband was pleading with me to do something, I insisted on waiting it out.  Financial obligation is just as huge a stress-burden for me as any, I was not going to incur one more bill!

We are close to done with the past!  The next updates will transition into recent events and what I am dealing with NOW physically and mentally.  Its not going to be very encouraging just yet.  But if you want to keep reading, I do plan for things to take a turn for the better and even hope to be helpful at some point!  Thanks for sticking it out, if you do!

 

The Headache by George Cruikshank

If you had a REAL Migraine, you would know it –Because, well…ME (PART FOUR)

Continuing from where I left off…

About a month later…after a medical appointment with my husband we were standing at the elevators, I reach out to press a button, only to find that, uhh well…there was none.  ANYWHERE, I didn’t grasp what was going on, I looked high and low but saw nothing but smooth metal all around the elevator doors.  My husband reaches out and pushes the button and I’m like, “Oh wow, where is my head?”  No big deal, right? Well, the next day at work I looked to the usual resting spot of the seasonal syrup bottle and it was not there. It was ALWAYS in the same place and I was extremely confused like there was an invisible force field blocking my view.  I finally give in and ask where it went and my co-worker just looks at me, a really weird look. It was in its proper place, right in front of my face.  Great, now people think I’m doing drugs!  Flashback to that one time I was mistaking muscle relaxers for my thyroid meds, they thought I was bonkers then too. And I felt bonkers, not to mention unbelievably tired!  I fell asleep doing research on narcolepsy that week, heh.

The next day, I was making dinner, rummaging the around my cabinets for the celery salt.  (Already a sign something is wrong, I know where EVERYTHING in my kitchen is.)  I recognize the bottle but as my eyes move to the words on the label, I…CAN’T…READ.  “I CAN’T READ!!”  I scream out several times and my whole family comes running.  I hold out the celery salt to my husband, “WHAT DOES THIS SAY!  I CAN’T READ!”  –We are talking total freak-out mode here.  I sat down and cried, no BAWLED!

After calming down a bit I could tell that my vision was shaky and blurry around the edges.  I tried to remember exactly what happened when I looked at the spice bottle.  All that stands out is the frightening realization that at that moment I had forgotten how to read, but in my mind I can see the label, a bizarre kind of star-burst.  Like in comic books, the shape of the bam/pow noises.  That vision is forever perfectly preserved in my head.

After reading everything I could find, I decided that it had to be a migraine.  But I still have to wake at 3:30am and go to work.  So the next morning as I’m leaving the house in the dark of 4am, it was apparently the perfect time for a quick tumble on the stairs.  Absolutely NO idea what happened, I have no memory except seeing my hand shield my face from hitting the hard wood of the deck.  I hit my forehead, my knees and skinned my hand up pretty good.  I got in my car and drove to work anyway.  –I never said I thought clearly early in the morning.  My vision stayed shaky and I couldn’t think about anything else so I ended up leaving work and going back to Urgent Care (AGAIN).  They were all “hair on fire” as soon as they heard the words fall and vision.  I was rushed to the ER for fear of a detached retina.  Yeah.  At least it got me past all the ER red tape.

Long story short, one MRI and four different doctor consults later, (I was billed separately for each of them!) they decided it was indeed a migraine.   Migraine with Aura, to be exact. The team of Neurologists explained that Migraine with Aura does not always present the same for everyone.  It usually effects only one eye but in rare cases it presents in both, like with me.  I have a family history of migraines and they found a high level of Tyramine in my blood and that sealed it for them.  There are foods high in Tyramine that can promote migraines.  They happen to be all of my favorite foods.  I sheepishly admitted to eating a quarter pound of baking chocolate for lunch one day that week.  (It’s those little chips, just too easy.)  That and having a love affair with all things Italian, I had been drinking lots of red wine, eating lots of pungent, stinky cheese and cured meats.  All high in Tyramine…well screw me.

From that point on migraines have become a way of life.  But then, they always had been, just not “with Aura”.  I have suffered from awful, painful headaches most of my life.  Headaches that 4,000mg of Ibuprofen couldn’t touch.  Growing up, my parents couldn’t afford the luxury of non-emergency medical care. We had no insurance. Not wanting to be a burden, I always self-medicated.  I once heard my dad say he was taking up to FORTY 200mg pills of ibuprofen a day for his pain (but he had a large cancerous tumor, and I did not).  I thought that must be what we do to deal, I really didn’t known any better.  In my late teens, I learned what those kind of doses can do to your insides and I became properly frightened to take more than recommended on the bottles. (But I fear much damage was done already.) I learned to go without meds, life wasn’t ever going to stop for a teenager (not in those days).  I developed a very high tolerance for pain.  So much that I have a hard time comprehending my pain levels even now.  I don’t realize how much I hurt until I’ve landed myself in bed for a few days.

Up to this point in my life I had always been told that I have “no idea what a real migraine is” or “I would KNOW if I had a real migraine”.  ” I wouldn’t be able to stand if I had a real migraine/I’d be puking my guts up, etc.” Turns out they were wrong since just like with most illnesses, we really can’t compare them. I have never been the type to throw up a lot, even with nausea and the flu. While pregnant, I was nauseous every day for six months but I only ever threw up TWICE. Even through my worst bouts with migraines, only about 15% of them have made me light sensitive.  And then I don’t realize it until I am out of the light.  Sometimes I purposely lay in the sun when I have a migraine, it eases my nausea and the warmth is comforting. 

I don’t need anyone to confirm that I have migraines, I know what they are now.  I see this as small, unkind lesson in individuality.  It would be nice if we didn’t feel a need to be validated about our pain. So many people suffer daily that it sometimes feels like a competition. Old age seems to be the perfect opportunity to discount what someone else is going through…”Oh, just wait until you get MY age!” –Anyone?? But no, you can’t crawl inside my body and I can’t crawl inside yours.  So please, if you are tempted to tell someone (anyone) how they have no idea how bad its going to get when they are older or that they are lucky compared to you or Aunt Gertie…DON’T!!! BECAUSE YOU DO NOT KNOW WHAT THEY ARE SUFFERING THROUGH.

YET ANOTHER CHAPTER COMING SOON

 

Just takin' it all down

Daily Personal Health Log

Oh, the stimulating prospect of a Daily Personal Log for tracking general health.  In all its glory…the exciting details of just how constipated I am and the lovable nuances of Aunt Flow…just to name a few.  It’s so nice having to accept this as part of your life.  But it’s true, I need one. If for nothing else I need to be able to provide specific details to my doctors. They recommend it and that’s almost as good as demanding it. As a teen, I recall listening to “adult” conversations and praying that I never resorted to in-depth discussions on bowel habits and my enlightening secret to regularity.  Right about now I’m wishing I had an enlightening secret to regularity :(

I have to admit, I didn’t look really hard for a ready-made solution.  That’s partly my reason for this post.  One -I’m lazy and TWO -my ADD-addled brain got sick of searching for something to fit my needs.  Sometimes I have the patience of a saint when doing research, but this was like 9th grade Algebra class ALL OVER again.  Straight up FAIL, followed by the big fat STUPID painted across my forehead. I couldn’t even read the results after awhile, they were blurry and all blah, blah, blah.  I was totally seeing that teacher from Charlie Brown in the top right hand corner of my screen.  I don’t even know how to look for this sort of thing, but it felt like I was hunting down the proverbial needle in a haystack.

So, I sometimes I brainstorm.  Great and wonderful ideas that are promptly forgotten like I never even had them in the first place.  I blame this on the fact that I only seem to have these successful brainstorm sessions when I am in the shower, or more recently stuck on the throne :\  Two places I do not have the ability to record my brilliant ideas.  As I was searching, I was trying to recall just a hint of brilliance.  It finally came to me that I had looked into seeing a doctor at one point that had some particularly impressive and thorough intake forms.

So with those intake forms in mind I came up with my own list of things that needed to be tracked daily and here they are.  Just a list, perhaps at some point I will be ambitious enough to turn it into a nifty little spreadsheet.  (Just in case you didn’t realize how lazy I am, yes, I do know how easy it is.)

Date:
Overall Pain meter: (1-10)
Meds:  Besides the ones you take every single day.  include changes in dosage
Sleep: how many hours total, Was it restful/restless, etc.
Activity: ANY, from exercise to cleaning the toilet.
Food: If you are on a diet, did you stick to it?  Did you have cravings?  Did you not eat at all?
Alcohol: Obvious, YES :)
Mental/emotional: Are you just sad or are you depressed.  What caused you to take that extra ____ today.
Skin/hair: Do you have dry scalp today?  How bad?  Eczema worse than usual? Breakouts, etc.
Headaches: Migraines or just annoying aches?
Eyes: Could you wear your contacts or were your eyes way too dry?  Blurry vision, itchy, etc.
Ears: Aches, fluid, tinnitus, blood rushing/heartbeat?
Nose/throat/respiratory: Pain, congestion, etc.
Back: Pain meter 1-10 and locations
Heart: Palpitations, chest pain, etc.
Gastro/Urinary: Bowel habits, urinary urgency, etc.
Menstrual Cycle:  Details, do not forget the nagging off-cycle symptoms
Autoimmune Specific:  Fatigue, numbness, muscle issues, all the other stuff that didn’t fit anywhere else :)

I feel like this is decent for my personal needs.  Maybe you would do some tweaking.  No, not twerking.  This is a NO TWERKING ZONE.  Not that any of us could twerk if we wanted to anyways!  Anyhoo, give me your suggestions.  Am I doing this all wrong, amateur that I am?  What do you use?

 

Random

Is Your Subconcious Speaking to You?

Nope, I’m not talking clairvoyance here.  Our bodies are SMART, our brain is amazing and our subconscious allows us to “know” things that our waking mind does not.  Our waking mind, for one, is too busy trying to cope with life and all those things we never though we would have to face.  Things that we are consciously worried about and hoping our damnest those built-in coping mechanisms will bury…our subconscious mind busy is exploring possibilities.  I think this often affects the direction our dreams take. Those anxiety/stress dreams.

Lately my health has been UN-ignorable, with diagnoses and new symptoms popping up faster than I can blink.  I feel like a broken machine, and its showing up in my dreams.  Almost every single night.  I stay worried about me,  about my family…what are they going to be stuck dealing with if my heath continues to decline?  Will I even have any friends left by the end of the year?

Then last night I had two dreams  (Way more than that, but these stand out).  The first was vague, but I remember I was considering having my hands surgically removed.  I remember trying to weigh the pros and cons.  I even remember, “Am I really considering giving up my hands for good?”  My guess is that this would be related to the pain I feel from the constant excruciating itching I feel at night especially.  I wake up regularly with new open sores, scratches and bloody hands. Is my subconscious trying to tell me to go get bionic hands?

The other was an anxiety dream about my impending ultrasound.  I dreamed I went in for it and they found a huge tumor in my stomach.  I was scared and relieved at the same time.  I have had no less than four doctor opinions that the large lumps in my body that have appeared in the last five years are just normal changes from aging and hormones.  I even paid out of pocket for a CT Scan.  My doctor ordered it but my insurance denied it, I had it anyway.  They did a scan of a tiny little area of the trunk of my body.  It showed how my body was uneven but didn’t show why.  If they had bothered to take the scan just a little lower on my body they might have found something pushing my internal organs.  They don’t know though, because they didn’t look.  That is the most frustrating thing about procedures like these.  Such a waste.  I obviously have much anxiety about this ultrasound.  I know something’s wrong, but what?  Will they listen to me this time and take the extra five minutes to explore a little?  It weighs a lot on my mind.

So I definitely think my dream was trying to express something that I have not caught on to, consciously anyway. The fact that even if its not good news, I would welcome having some explanations is something I have not been willing to admit to myself. Finding something wrong could actually be a good thing, maybe it will be something that can be fixed! I guess we will find out soon enough.  I welcome knowledge. 

Tell me all about your crazy anxiety dreams!

Eczema

Autoimmune Allergies –Because, well…ME (PART THREE)

Within a month of starting my new dose of 25mcg of Synthroid, funny things started happening.  It had been at least a year since I’d taken anything for my thyroid.  Remember, nothing was really wrong with me, right?  It was just therapeutic dosage to appease the inquiries about my hormone levels.  Until now…I was over 4.0 TSH.  Not considered horrible but after many years of people arguing over it, considered high enough to be officially hypothyroid.  To the best of my knowledge, there was little available information to suggest that most people with under-active thyroids also have Hashimoto’s Disease at that time.

Puffy, scaly eyes?
Puffy, scaly eyes?

I’ve had moderate-to-severe eczema since I was eight, so I never get surprised when the odd itchy rash would pop up –and pop up they did.  They appeared in more areas and became more itchy as the days passed.   The skin around my eyes scaled over and I looked about 20 years older.  (This allergic symptom is fairly common in my family, my Aunt dubbed it “Alligator Eyes”.)  I went to Florida for a week and came back even worse than when I left.   Which NEVER happens, Florida is always so much kinder to my skin.  Now the skin around my eyes was swelling and my lips were scaly and swollen too.  Everyone was asking if I had been crying or if I was OK.  It didn’t feel like my throat was closing but my face was so puffy that everyone around me insisted I was going to spontaneously burst into anaphylaxis at any second.  So sufficiently scared into action, I was off to Urgent Care where they so expertly verified that I was having a mild reaction to something unknown. Since the only thing that was fairly new in my life was Synthroid, they said I could try switching to Armour to see if it helped.  Months later, I saw in my notes where the VERY YOUNG doctor wrote that she thought I had sunburn from my trip to Florida and that I was obviously looking for someone to change my medication to Armour (which she did not do). She also said I talked too much to the point that I dominated the conversation. So from now on ladies, when they ask you about your health history, even if they are a completely new doctor…make sure not to talk too much and provide them with enough information on your symptoms. Wouldn’t want to have an actual diagnosis, would we?! Honestly, I’m surprised I didn’t get an anti-depressant shoved in my face. Because you know, its all in your head!

With this new information, I called the doc who had done the initial blood test for my thyroid. She was way nicer than the Internist I had begun to see as my new GP, so I preferred the communication with her.  Without any questions, I was switched to Armour.  I was really surprised and relieved to not have to fight the battle of whether or not Armour was a valid medication. 

The symptoms did not improve for a few weeks.  Even then, it only stopped swelling my face.  I have always assumed that stuff like this happened because of my ridiculously sensitive skin.  I fooled around with my skin and make-up regime until I gave up and assumed this was going to be as good as it gets for me unless I quit make-up all together.  I had been referred to an allergist by Urgent Care.  They did the whole battery of tests for environmental allergies, which seemed to me a slightly ignorant choice in light of my symptoms.  I brought in a list of things that seemed to be triggers for me.  He glanced at them and said that those reactions along with my skin allergies weren’t real allergies.  He proceeded to give a poor explanation of why this was so and spouted off some technical stuff that I’m pretty sure he KNEW was way over my head.   He left and I sat in the small room, alone and wondering why I was so stupid for not understanding what he said to me and I waited for my results. The cheery nurse walked in twenty minutes later and observed the test pricks on my arm.  She said I was lucky, only one little reaction to mold.  (WHO ISN’T ALLERGIC TO MOLD, BTW?)  So what now, how do I find out what is causing these reactions?  “You should try a Dermatologist.” was their impassive answer.  Feeling demoralized, I walked away from this office rather quickly with no desire to return.

At the Dermatologist they decided to start with a TRUE TEST dermal patch test.  It tests for allergic reactions to 35 substances.  The itching was so intense that I was fighting the urge to rip off the patches the entire time.  Two days later when they took them off, they were aghast.  They had never seen anything like it in over twenty years of practicing Dermatology. I had a CRAZY reaction to Gold.  It took six months to heal and I have a huge scar where it was.  I also tested reactive to fever-few and  to Isothiazolinone.  Don’t know what that is?  Well, just know its in EVERYTHING.  My hand eczema was so severe that I was referred to Duke Universty for further testing.  The Dermatologist believed my allergic reactions were beyond his scope. I am very thankful when a doctor can do this. So many of them decide that if they cannot help you that the problem does not exist. Although it is very hard to pretend the disgusting mess that is my hands, do not exist!

My hands were and are unmanageable.  Constant open sores, if I try to clap them together or use any kind of force, skin bursts like a sausage cooking in a skillet and it gets too hot, splitting its casing.  Exposure to cleaning chemicals and metal (it seems) of any kind aggravates it to the point that my dominant hand was grossly afflicted compared to the other.  Handling money and cleaning, both huge parts of my job, were killing me.  People looked at my hands with disgust and I grew more and more uncomfortable in such constant physical contact with the public.   Gloves didn’t help.  Nothing helped.  I’ve had this for so long that I don’t have finger prints anymore.  I once had a job that required me to be bonded and fingerprinted.  After my prints were rejected three times, the Department of Criminal Justice required me to have a signed affidavit on file stating I have “no discernible fingerprints”.

I still haven’t made it for further testing.  The pile of other health issues began to be too distracting, as is often the case with autoimmune sufferers. It can never be just one thing. I still did not feel well on my new treatment for my thyroid, but life was flying past my face and I couldn’t afford a physical break-down. And so it goes.

TO BE CONTINUED…

 

 

 

Don't forget to invite Morrissey, though

Pity Party of One

Some days.  They just suck a whole lot more than other days.  I’ve had a few of those in a row now.  Having too many irons in the fire and ZERO energy to lift them out.  Realizing that after waiting many years for a diagnosis that would give me answers all I have is more questions.  And the worst, knowing your diagnosis doesn’t mean you have a treatment.

Then there is sometimes that feeling that you have a lack of support from those around you.  Or you feel like you are bleeding your significant other dry with having to pick up the slack.  Feeling guilty that your kid doesn’t get to do as much as he should and have as much fun because you have no energy.

Sometimes it even hurts to smile.  Hurts to pretend that the words coming out of your mouth aren’t a lie.  “I’m fine, how are you?”

I know you know what I’m talking about

How about, the questioning looks of those who aren’t quite convinced that you are suffering at all?  “You look fine to me, what’s wrong?”  “Oh, my _____ has the same thing and they are just fine now, like it never happened!”  “Maybe we should focus on the positives in our lives, there are so many that would be grateful to be you.”

I’m not trying to ruin your day.  Just remember to be kind and just because you might know what hard times are like we will never know what its like to be anyone but ourselves.  And before we relegate someone to the mental ward, we should realize that there are real medical causes for depression and anxiety.  Throwing a pill at it is not always the answer.  Hashimoto’s is just one disease that causes severe depression and anxiety.  The symptoms won’t go away unless we treat the disease itself.  Treatment is hard, it includes a lot of setbacks and requires the support of your loved ones.  It requires proper medication and a special diet, and its never as easy as it sounds.

Because, well…ME (PART TWO)

Adrenal Fatigue, anyone?
Adrenal Fatigue, anyone?

Up until a year ago, I was a Barista and I loved it.  I was on my feet the whole time so I couldn’t fall asleep if I wanted to.  If you suffer from Hypothyroidism or anything like it, you probably know what I mean.  A desk job was a one way ticket down the river of drool that flows over your arm and onto the desk (and maybe onto the floor if you’re really hydrated).  For me, choosing a job that kept me moving was absolutely essential.  Not just for the fatigue but for my back.  When you have DDD, the best way to stave off an episode is to be active every day.  Some people go to the gym, I have issues with motivation.  Having it be my job just works out better for me.

Just because I loved my job and it helped with my health issues, that didn’t make it easy.  I went home exhausted and sore, especially the first few months but I got used to it.  I even felt marginally normal for awhile.  But with time, the pain and fatigue came back and increased.  Eventually there was  numbness in my calves that stayed with me 80% of the time.  After a particularly long day I would make the thirty minute drive home, only to find that when I finally got there I could not get out of the car.  (Which dually sucks when you just downed a Venti iced water and have to pee like a race horse!)  It took about a year for the honeymoon to end.  I began to be so exhausted that I no longer looked forward to my exciting job, chatting with people all day and breathing in the wonderful aroma that is COFFEE.  It was showing on my face too, customers and co-workers began to notice.   At home I would cry because I thought I was becoming horrible at my job.  I was depressed because I couldn’t keep up with my fresh young college student co-workers.  I felt like a dinosaur…

The summer before I finally had to quit my job, I spoke with my gynecologist at my annual physical.  We talked about how I felt.  I had even been trying to go to the gym regularly for some time.  When I was young, the more active I was the more energy I had.  Well, not anymore.  And I couldn’t loose a pound to save my life.  My husband suggested going the extra mile and just straight up bust my ass every single day.  Nope, just nope…  She decided to test my thyroid out again, and she even gave me a little something extra since I was getting nowhere fast with my weight loss goals.  A short term course of Phentermine.   Boy was that a mistake.  I won’t ever take that drug again,  it was dangerous for someone with my health issues.  Its probably dangerous for everyone!   Here is another subject that deserves a post of its own.  I’ll work in it ;)

Flash forward about a month, I am finally getting around to see the Internist my gynecologist referred me to about a lump in the area under my left breast.  (Yet another of my medical mysteries, lol) He asks what dosage of Synthroid I am on, to which I reply I am on none.  He asks why not!?  Funny question considering I’ve been told I don’t need it 98% of the time…He said my last labs show that I was over 4.0 TSH and I should be on something.  Its finally official, it only took seven years!  He started me on Synthroid 25mcg and off I went.

TO BE CONTINUED…