Monday, October 17, 2011

Wow man.  How long has it been since I've typed on here??  I apologize to whoever is reading this that already knows everything I'm going to talk about.  I have decided that because I am feeling very frustrated about everything, a little venting and perhaps an attempt at humor will make me feel better. 

Step One:  Semi-sudden crash into severe depression.  I say semi because there were warning signs for several weeks.  I simply (and mistakenly) chose to ignore them.  This denial resulted in one of the worst two episodes of depression I've ever experienced, from which I am still trying to recover. 
Step Two:  I spent a full weekend immersed in nonstop crying and irrational guilt and anxiety over normal everyday things, especially social situations.
Step Three:  Out of desperation, an entirely honest email about what was happening had to be sent because I wouldn't be able to fulfill my responsibilities at church the next day.  This began, I am sure, the trickling of information being passed from one auxiliary leader to another.  (See anxiety over social situations in Step Two).
Step Four:  An immediate phone call to the Dr was placed at 8 am that Monday morning.  Mercifully, they scheduled me to come in that afternoon. 
Step Five:  Dr says, "How are you doing?"  I say...nothing for a couple of minutes because I'm already crying again.  After a long discussion and a brief once over, Dr says, "You have severe depression." And in another act of mercy gives me a prescription for new meds.
Step Six:  Appt with my orthopedic surgeon that I'd already scheduled due to pain in a shoulder that is totally screwed up.  I get a really uncomfortable cortisone shot in my shoulder joint.
Step Seven:  Two weeks of crazy side effects, including nervousness, a jittery inability to sit still, nausea, foggy feeling in my head, big headaches, lots of yawning and even feeling just plain high.  I mean, weird high.

I'm gonna have to stop Step numbering everything now, cause I think you'll get tired of reading them.  During those first two weeks, I had to ask for an honorable release from my church stuff because I couldn't even get myself to go to the grocery store.  We also went on a week-long trip to the mtns in WY for a family vacay that we'd already planned for.  It was good timing.  I needed the peace and the time alone with my family, especially my husband.  He immediately became my literal security blanket.  Our relationship suddenly morphed into this incredibly close attachment.  He has never been more tender, patient, helpful or understanding in the 16 years we've known each other.  I am very lucky to have him and I love him very much for loving me anyway. 

My awesome Dr ordered some blood work, just to rule out some things and also because I hadn't had any done for years.  The results come back telling me that I am really healthy except for two things:  extremely low Vitamin D and slightly elevated Iron.  Their recommendation:  a prescription dose of Vit D combined with an otc version, equaling 67,000 mg per week; and since I wasn't taking any iron supplements or vitamins they told me to go donate blood to bring my iron down.  I actually got up the next day and went to donate blood for the first time in my life. 

Three weeks after 'the crash' I returned to my Dr for a checkup.  She takes a little bit more blood to rule out something called Hemochromatosis.  Yeah...whatever.  Nearly a week passed with no news and I felt pretty good about starting to feel like a normal person again.  But, since my luck was already down, I guess, the phone did eventually ring and I spoke directly to my Dr.  She informed me that I was positive for both genetic mutations, meaning I had to inherit it from both my parents.  And told me I needed to schedule an appointment with a Hematologist. 

Hemochromatosis (hereafter HM), I have learned, is a genetic chromosome mutation that causes my body to absorb too much iron.  There are several different kinds of mutations that cause it.  The particular one I have only occurs in 4 out of every 100 people with HM.  The gene also predisposes me to be 3-4 times more likely to someday have a stroke.  Luckily, of the different strains, mine means I only absorb just over 6 times the iron that I should.  Some of the others are so much higher.  Apparently it's more common in people of Scandinavian/Northern European decent.  Anyway, this is a problem because the body absorbs too much iron, and then has to find places to store it.  Like the liver, pancreas, heart, etc.  Immediately it's not a problem.  And in fact it's rarely discovered in women before the age of 50 because having a period keeps it under control until then.  After years of this excess storage, it can cause liver cancer, cirrhosis, diabetes, heart disease, arthritis, etc.  This also means I can't ever donate blood.

So to make a long story just a bit shorter, I visited the hematologist.  He ran some more of my blood.  (yay!!) and called me the next day.  Long term iron stores or Ferritin, should be somewhere between 20-50.  Mine was 89.  So they said I needed to come in and have my first phlebotomy.  It's the same process as donating blood, but only 1 pint instead of 2, and the blood is tossed in the trash. 

Day one:  They start a line in my left arm and use a large syringe to suck out what looked like a couple of tablespoons.  He then injected a little bit of some liquid which I can't remember the name to keep the vein open.  The 2 T got separated into two different vials for testing of ferritin and tbc.  He then walked me into a little cubical with these nice comfy chairs.  Despite that liquid, whatever it was, the little catheter thingy in my arm got bent and he couldn't get it to work.  So out it came and in went another line into my right arm.  The other end was stuck in the top of a glass jar.  The jar looks just like the ones they bottle vinegar.  My blood just zipped through that tube and filled up the jar in a matter of minutes.  But upon standing, I nearly passed out.  So the chair got laid back, and in came a bag of fluids, some chips and a drink of water. 

Day two:  I return for my second phlebotomy a week later.  This time I tell them just to start with the right arm.  She followed the same process, sucking out that 2T and moving me to the comfy chair.  This time though, the blood doesn't seem to want to come out.  After about 1/2 a jar, it just isn't moving.  So out comes that line and in goes a second to my left arm.  That side didn't work very well either, but she managed to eeek out another half of a jar and then I was done.  Before I could even think about standing up, the blood drained from my face and the room started spinning.  And yep, you guessed it.  Another bag of fluids, etc. 

Currently, 3 days later, I still feel a bit weak.  I get a head rush if I get up too fast.  The day after, I could hardly walk up the stairs, I was so tired.  I'm trying to guzzle water (in between rt 44's) and I'm trying to have a protein shake here and there.  I have a large bruise on my left arm and soreness in that bicep.  Annoying.  My parents think my doctors haven't diagnosed me correctly and that they're being too radical.  I've read that if they can get the iron down to normal before it has a chance to damage any organs, I will have less than a 1% chance of developing liver cancer or cirrhosis.  That seems like a good thing, right? 

Oh but if that were all I was dealing with right now.  The cortisone shot made my shoulder feel better for about a month.  But it's right back to hurting again and my ortho guy said if that happened I would need to get an MRI so we could decide what kind of surgery to do.  The choice is either a second arthroscopic temporary fix or a full shoulder replacement.  I wish you could see the completely sarcastic smile on my face.  I am just dealing with the pain right now because I don't have the time or the patience to start something else.

I also have this weird thing in my legs, where sometimes I will have a large blood vessel just spontaneously burst.  It always leaves a very large, very ugly bruise.  I had one burst the same day as my first phleb.  I've asked two or three friends who are nurses, a friend who works as a PA in the ER and even my hematologist and nobody seems to know why it happens or what it means.  ::hands up in the air and a shoulder shrug::

Then a week ago, I had to take my dog to the vet and have her put to sleep.  She was so sick and so old.  I know it was the best decision.  We sure do miss her though.  We had her for over 13 years.  I got to see her when she was only two weeks old and I got to look into her eyes as they gave her that injection.  It was very strange watching them change, in a fraction of a second, from being here to being gone.  Just like that.  It seems like such a cliche' for me to add, "And dog died!"  But really and truly, she did.

 The final straw: About 4 weeks ago my lower back started hurting me.  I just ignored it and pushed through.  It even felt better for a few days and I thought I was in the clear.  Until this morning.  I'd been half awake all night because it hurt.  But this morning, I could hardly get out of bed.  I discovered that I couldn't put any weight on my left leg.  Somehow I made it to the bathroom anyway, but almost passed out on the way back to the bed.  So Honey found me lying on the floor in the dark in excruciating pain and unable to move.  I have spent a very long day sitting on a heating pad and taking a large dose of ibuprofen every 6 hours.  How I wish I had some stronger pain killers.  How I wish I didn't have to go see yet another Dr to get them.
I give in.  Fhs, someone come in and call off the dogs!  I am completely destroyed.  What else could possibly happen?  My poor, poor husband.  He has to deal with so much crap.  And I feel like I'm a senior citizen in a 37 yr old body.  Seriously.  What the crap is going on, anyway?  Hey, sorry about all of the 'poor me' stuff, but how could I possibly be feeling anything other than sorry for myself?  I'm dreading bedtime.  I'm afraid I won't be able to get comfortable.  I'm afraid I won't be able to sleep.  And I'm afraid that tomorrow morning I will be just as incapacitated as I was today. 

At least I had my diet coke today.  I did drop a full one on my coffee table this afternoon, and it broke and spilled all over the place.  So super sad.  Luckily my super hero husband came swooping in and got me a fresh one.  I must be in need of a huge shot of humility.  I'm waving my little white flag and I'm crying 'Uncle.'  I hope I can get over the back thing quickly.  I hope my ferritin will drop rapidly so I won't have to do phleb more than one or two more times.  Even though I know the lifelong treatment of HM is periodic phlebotomy to keep my iron in a normal range.  It's this initial every week thing that's tiring.  After that, it'll just be a few times a year. 

Send up a prayer for me if you think about it.  I think I've been put on hold.  I even told Honey this morning that when all of my bullcrap is resolved and over, I want him to take a trip to Vegas so he can do something fun for himself.  "Stay in a fancy hotel and play poker for a couple of days."  He deserves it, I think. 


Markie23 said...

Ya, this sucks! Hang in there. ::Prayers headed your way::

Jenny said...

I'm sorry to hear about all the stuff you're having to deal with. You'll be in my prayers.

Hot Pants said...

I briefly got lobotomy and phlebotomy mixed up. So if it makes you feel any better, you are way better off than you would be if you have to go get a lobotomy right now. (I think) Lucky for you though, I read this before I said my nighttime prayers, and I have plenty of room to squeeze you into it. Hope it all gets better soon!