So, it’s been 25 days and 25 nights, and I’ve managed to avoid coming back here to write about myself. Bad me – it’s a promise I swore I wasn’t going to break, but… BUT.
I hate the idea of talking about myself. Actually, I like ‘talking’ about me with someone face to face, or on the phone because we can laugh, smile; always joke around. I’m basically a big goof. But writing about my life, well – that makes it all seem far too real and unappealing. Think about the phrase ‘the apple doesn’t fall far from the tree’ when used in a positive light. Well, go over and take a look at the apple laying on the ground – it looks like shit! And something has probably gnawed on it by now… I don’t mean to be a Debbie-downer, and for the majority of my life it’s been good – great, actually. Then, last October came around…
I’m gonna give you my story quick and dirty, so pardon the lack of emotional input. Once it’s out, I may be able to do this ‘hey this is actually about me’ thing a little easier.
Last October, my doctor noticed that I was showing signs of my blood levels being low. Since my early 20’s, I’ve been told I was Thalasemic and an iron malabsorber. What that means is: a) my body does not make blood at a normal rate; and b) I cannot absorb iron (or any mineral) through ingestion. When my levels start to drop, and I’ve basically used all the iron my body had stored up, I go for infusions. No biggie. The symptoms are distinct: I start to get confused and lose words easily; I can add large numbers off the top of my head, but can’t figure out what a few quarters, dimes and a penny add up to; and I lose track of conversations very easily. Talk to me for three minutes, and you’ll realize that I’ve checked-out and have no idea what you just said even though I was listening carefully and diligently – I just can’t process the input. When those things happen, I go for an infusion, then I don’t worry about it for 7 – 9 more years. All’s good.
This time around, it turned out that when my doc and I ran the usual cognitive tests, and I showed the usual symptoms of needing iron, my body was actually holding much more of it than it ever had before. Normal range for a healthy female is arguably between 32 or 38 to 170 ug/dl (yes, there is a long explanation, but I won’t bother to type it here – Google it if you want to know). Anyway, my iron came back high – very high for me. And with consistent monitoring, it only climbed higher.
In November, my hematologist gave me a year to live before one of my major organ was expected to shut down. I had iron poisoning, and we didn’t know what was causing it at the time. I was going to die from the fact that being a malabsorber, my body didn’t know how to fend off the iron that was bonding to my blood too fast – thus the organ failure bit. Expected demise: heart failure. But one of the others could go first – brain, lungs, kidneys, liver, all due to insufficient oxygenation. My blood was bad blood (still a great song)!
In December I was told that my blood was ‘thickening’ so quickly (bonding on a molecular level with far too much iron), that my year had exponential shortened with the pace of my rapid iron-absorption. This is all being delivered quick and easy – I’m skipping most of the medical terms because it’s just easier for me emotionally, and for you to read.
To this point, and it’s been a month, I haven’t told my family yet, including my husband. I had come to terms with my situation and planned to live out the time I had left with those around me none-the-wiser. Basically, I opted for the normal-life plan. No pity, no pain, just life as it comes.
Then I had a talk with a friend who has three boys (my husband and I have no children), and I told him about it. He’s a very good friend, a very true friend, and would have my back in a heartbeat. During the conversation, he let’s me know that as a father, he would support his child through anything no matter what it was, but he could never forgive them for not telling him they knew they were dying. Okay – opinion weighed, I’m a logical person, I get it. I opt to tell my husband. He’s stunned, hurt, but from day one of hearing the news, he’s never believed that I wouldn’t beat this very odd, and extremely undocumented thing I was going through. He held with my opinion that telling my parents might not be the best choice, but that the choice was mine to make and he understood – I made it. Two weeks before Christmas 2014, I told my parents that I had less than a year to live with no viable options for treatment left to me. (We’d already tried blood letting, my body didn’t make blood fast enough to make it worth the risk, and for some reason, the iron didn’t bond with the new blood right away. So my heart was pumping sludge one moment and beautifully clean, if not deficient, Valvoline the next. EHH! Red flag – too dangerous to mess with after the second try. I have an allergic reaction – similar to anaphylactic shock – each time I’m given iron, so that disqualified me from blood stripping because the chance of rejecting the ‘cleaned’ blood was too high. EHH! Red flag – no facility will seat me with a better than 87% chance of rejection. There is a drug on the market that chemically bonds with the iron attached to my hemoglobin, dislodges it, and flushes it from the body OVER TIME. EHH! Red flag – time. EHH! Red flag number two – I’d already been on a trial drug for another organ that was damaged during a surgical procedure and suffered every ill side effect possible without even knowing they existed (doctors don’t like to try a second one, even for a different reason). Tell me you can cure me in two years, and I can live with and through anything. Tell me it’s a life-time maintenance treatment and my blood pressure and body temp will most likely drop in a matter of seconds without warning three or four times a week and I’ll go into shock, and I’ve gotta take a pass. The quality of my life means more than the length of it to me. Living means to live, not to simply exist in my eyes.) – Yes, that was one big parenthesized comment. Beyond that, there was nothing to do because they had no idea what was causing what was happening in my body. Medical science said short of having hemochromatosis (heavy metal poisoning), there was no natural way for this to be happening. And I didn’t have hemochromatosis.
It sucks telling your parents that you’re dying, and it sucks even more to know what you’re going to die from, but not why, and that there is no known treatment that will work for you. My parents were very supportive. I had planned on going no further with the information as far as my family was concerned, but my father didn’t feel it was the right thing to do, he felt my siblings and the rest of the family had a right to know. His intent was fully altruistic – he felt they should be offered the chance to know so they could support me in anyway they could, and not live with the regret of not knowing afterwards. So I gave that some thought, and BTW, I was raised to respect my parents opinion, weigh it carefully, and understand that while ‘I may already know everything’, they’ve lived through a lot more than I have. And I fully respect that, it’s part of my base personality; part of what makes me who I am. I couldn’t exist any other way. Let’s call it the way I’m hardwired.
I decided yet again to second guess myself and tell my siblings what was happening. When it comes to my family, I’m extremely short sighted, trusting, and probably too naive. I see them for who they are, but I choose to accept them for who I believe them to be. I don’t find any fault with that. Blood is blood, and you always back blood. Again, that is how I was raised.
I wasn’t aware of it, but apparently (and I’m sure with good intentions) my family got together in early to mid January and tried to ease their pain and figure out what they could do to help me. Well, what they figured out is that because I take a prescription medication for managing the side effects of my earlier mentioned damaged organ, I must be an addict and therefore I was lying about dying.
This is something I didn’t know about for two and a half months. I won’t go into details on this part, but suffice it to say that I was extremely confused as to why only one family member was offering me support, and the others were ostracizing me. Something I would never have believed possible – even if I had it to do over a thousand times, I still wouldn’t be capable of believing it possible. Anyway – as time has gone on, I’ve lost my family. I’ve found support in six places – some I expected, but one took me completely by surprise, and I’m proud to say after many years, I’ve found a friendship I never believed could or would exist. Besides my husband and my mother, this person is working the hardest at keeping me sane and grounded through all of this – and for years we didn’t even speak. Okay – enough about family, I said I wasn’t going to dwell on that part.
Back to my physical condition. Quick side note – I don’t allow myself to keep track of the dates medical happenings happen to me; I refuse to track my life and quantify it by what day which thing took place, so I’ll speak again in very general terms when it comes to dates.
Sometime in late January, early February, my hematologist heard from a colleague of his about a research doctor in another country who was having a great deal of success (underground success) helping Thalasemic patients who were showing the same symptoms I was experiencing. Not knowing if it was my previously diagnosed Thalasemia or my iron malabsortion that was causing the issue, the doctor approached me about giving it a try. What could it really hurt at that point, right? So I agreed. He also got in touch with another colleague who’s family was very well funded (think stupid money here, money you and I couldn’t even fathom) and explained my situation, asking if they had a philanthropic interest in what was to become my doctor’s research project. They said yes, and it became me.
Through trial and as far as we know, no error, it was determined that I was actually ingesting iron – something my body was never capable of doing. Not ever having had this ability before, my body also didn’t know how to regulate the amount it was absorbing, or to shed the portion it should not be retaining (we don’t use all of the iron we intake, just a particular portion of it. Again, skipping the medical explanation here – it’s online if you want to read about it).
I can’t tell you exactly what I did to reverse what was happening to me (that will most likely see the light of day in five to six years when the team – yes I said team – of doctors that were treating me by the point that I had my reversal publish). What I can tell you is that normal range of iron I mentioned of 32 – 170 ug/dl for a healthy female was up to just shy of 900 when ‘the thing that happened’ happened.
So where am I now… Well, I’m holding steady between 130 & 140 ug/dl on my iron level (which for me is high, very high – but my body is handling it like a champ), the pulmonologist sees no damage to my lungs from lack of oxygenated blood. The nephrologist says my kidneys show no specific damage or excessive toxins, as does the gastroenterologist as far as my liver goes. The neurologist has given me a clean pass – no foggy goblins in my head, again from fear of minimally oxygenated blood. And my cardiologist… well, I’m still working at that. I had two stress tests that went poorly. I actually had a little itty-bitty heart attack during the first (but then I’d been having them without knowing it throughout the whole adventure, I’d honestly just thought it was part of the ride), and the second test was stopped before my pump started pumping funny. But, I was pushed much harder and for longer, so that’s improvement. Since, and I have one per week, so all together it will be five weeks now since the stress tests began, I’ve had three full tests where I was able to go to the wall without any sort of arrhythmia or tachycardia that would be considered out of the norm for my ticker – and I don’t need another (provided my chest pains stay minimal) for a month! I do about two hours of fair to hard cardio exercise a day to strengthen my heart, and so far it’s been working. I now wear glasses for reading, my eyesight has slowed it’s shifting roll to about two changes a day – my average was four when my blood was ‘thick’ – so soon I’ll be able to actually get a real prescription and hopefully see crap again! Yes, crap!! Seriously, when you’ve been through what I’ve been through (all gory details left out of this post, mind you), you LOVE the sight, idea, smell, hell – even taking a crap. I don’t say that to be crude, but to drive home the fact that life – every day of it, regardless of the isolation I feel, and the emotional pain I’m suffering knowing what my family has judged me to be – is to be cherished – even the shitty ones. All the crappy seconds count. They can be crappy, that’s okay, and you can feel like shit – but if you’re still breathing, there is always hope in everyday, even if that hope only exists for that day.
When I have a good day, I put a sparkly, glitter sticker on the ceiling of my office. I’m a grown woman, a horror/angst driven writer, an UrbEx adventurer, and utterly fearless when it comes to the ‘other than ordinary’ – I haven’t gone near glitter since my sisters kids were in grammar school (they’re all in their 20’s now). But the reason I put those stupid, cute stickers on my ceiling is so that when the tears start to roll, and I feel myself sinking, I can lean back in my chair and look at them – and remember. Because if you can smile, even alone, then you can climb back out of that hole – kicking and screaming the whole way – but you can still climb.
So, that’s my tale. My expiration date has been lifted, but there is no guarantee it won’t start all over again, and I won’t be back to square one at any moment because it was never determined what triggered someone without the ability to absorb iron in the first place to start absorbing it all of a sudden. Then, there is my heart – I have to keep monitoring it and keep up the grueling exercise routine. Mind you, I’m the kind of person who used to consider exercise walking to the kitchen for a cupcake. But, today is a good day, because I’m good today…physically anyway.
Why am I telling you all this? Not to toot my own horn, not to gain sympathy, not for pity (pity me and pardon me, but get the fuck off my blog). I’m telling you this because the private journal I was keeping wasn’t helping me move past my emotional whatever-you-wanna-call-it, and my doctor – my hematologist – thinks that letting it out, getting it out – not squirreling it away in a hidden place – might be healthy for me.
Yeah, so – welcome to me. At least the last seven months of me. I promise I’ll hit you with shorter posts, happier things, and more personality in the future. I was ‘ordered’ to do this today (something you’ll find I don’t take well to if you stick with me), but when the doc says do, life has just shown me that you do.
~ Okay, now I’m gonna go back to chewing on my nuts, and give myself a sticker!