The Zebra Among the Horses

Life is full of frustrations. Today I discovered that manually having to save post drafts is one of them. I write what I’m thinking, the minute I’m thinking of it, and saving is the very last thing that’s on my mind. Until my computer crashes or I accidentally hit a very sensitive button on the side of my mouse that sends my browser page backwards. I have lost this post twice today, and it’s driving me bonkers.

Happy Bunny FTW

After I hit the “Save” button on the bottom of the text field, a button I used to never have to press unless I wanted to and a process which now takes far longer than the original, I began to think about how to once again compose my post. And I thought a lot about frustration. Not so much the frustration I’m having with the computer right now, but the frustration associated with how long it took for me to finally get a diagnosis as to why I had spent my entire life getting sick.

The whole reasoning behind this entry came as the result of a piece I read on KevinMD.com by Shirie Leng, MD about the difficulties doctors face in diagnosing and treating patients, and the subsequent malpractice suits that arise when that horse turns out to be a zebra. She talks about a young man who had gone into the ER complaining of cough, fever and chest pain, was told he likely had the flu or a cold, prescribed antibiotics and sent on his way. Unfortunately, it turned out that the patient had a difficult to diagnose and impossible to treat virus, and passed away not long after. The family then sued for malpractice – and won.

Only in America can you sue a doctor for malpractice because he didn’t think to do a battery of tests on someone who was clinically presenting a common illness that millions of people get every day. Doctors are taught to look for horses not zebras, and for the most part it makes sense. Statistically speaking, it’s so rare to get a zebra illness that it just makes no sense to go that extra mile. Dr. Leng brings up an excellent point that hospitals are required to cut costs, and this poor doctor is now facing higher malpractice suit premiums because he didn’t do a whole slew of tests that probably never even occurred to him to do. Since he didn’t perform all kinds of expensive testing for a virtually impossible to diagnose illness that patient likely wouldn’t have had anyway, he did the right thing by sparing the patient the discomfort of going through a heart biopsy that statistically speaking would have resulted in nothing. Given the evidence, I wouldn’t have even thought about the rare virus the patient ended up dying from, and I’m not surprised at all that the doctor treated the patient the way that he did.

This made me think about my own situation a little. I’ve spent the past month or so frustrated that I have been sick my entire life and no one bothered to look for an underlying cause. I’ve been frustrated at having been on round after round after round of antibiotics, and getting told to “get the diabetes under control” and I would stop getting sick so often. I’ve been frustrated that the first person to say “you are way too old to be getting ear infections, let’s have a look at your immune system” didn’t come around until I was pushing 30. But to be honest, after reading that article and seeing it from the doctor’s side of the stethoscope, I have a little more understanding now of why things happened the way that it did. The fact of the matter is, it is very common for type 1 diabetics to have issues with illness and yeast growth. It is also very common for children to have ear infections, and very common for people living in New Jersey to have sinus infections (cause you know, smog). I’m a little upset that my PCP in Jersey brushed off my complaints of the allergy medication, decongestant and nasal spray use didn’t keep the infections away, but given that he had to have been in his 90s at the time, he probably just literally didn’t hear me. I have been quite upset and frustrated that for all this time, the “this shouldn’t be happening” comments were followed by criticisms of my self-management of diabetes or my lack of healthcare (because prior to 2014 it was sooooooo easy for someone with a pre-existing condition to get health insurance, after all). I’ve been frustrated that the “this shouldn’t be happening” comments weren’t followed by a “now, let’s find out why” and a series of tests until the beginning of last month.

Of course, I very likely have the reaction that I do because I’m still alive and I still have a chance. I have no intentions of suing anyone for malpractice despite the possibility of having irreparable damage in my lungs (still waiting for results on that). Had I died, perhaps things would be different. Maybe I would want to sue from beyond the grave.

Zombies

BTW I freaking love that movie

Maybe I would go to the grave angry. But I don’t want to be angry or frustrated. Yes, I have been living with a primary immune deficiency my entire life that no one caught. Yes, I am very well aware that I shouldn’t even be alive. Yes, I know that for my entire life, I have had Ig levels either at or only a hair above 0, I know that I have no mature B cells and it’s “inconclusive” that my body makes Bruton’s tyrosine kinase. I am very well aware at how incredibly rare it is for a female to present like this. Yes, Mayo Clinic, I am also very well aware that I am in fact a female, but thanks for asking just to be sure (yes, that actually did happen).

In the end, I am eternally grateful that I was able to make it this far. I am grateful that I had what I thought was an allergic reaction, which got me into the immunologist’s office. It may have taken almost 30 years for the blood work to happen so that we could find this out, but I don’t blame any of my doctors in the past for missing the underlying cause. I don’t blame any of them for looking at me as a horse instead of a zebra. Instead, I am going to hold my head up high and strut around the savanna in my trendy zebra stripes.

I don’t hold the medical community accountable for looking at me like a horse. All I do is ask that maybe you keep in the back of your mind that the zebras do exist.

Take Two

Went in for my second IVIG therapy today, and it was a vastly different experience than my last one. Instead of curling up in a ball, sobbing, shivering and in quite a bit of lower back and knee pain, I made it through this round without a hitch. No pain, no feeling of cold, not even a headache. I still have yet to develop one, which is amazing. My mother thinks that it’s because this time around my body is a little more used to it. A lifetime of zero immunoglobulin and then suddenly pumping 25mg of the stuff in…makes sense that it made me feel awful.

However, what did make me feel awful…how about some serious high blood sugar levels. Woke up well over 300 this morning, so I shot up via syringe. Added a bunch more before breakfast mostly because I mistakenly stacked doses, but knowing that I was fixing to be pumped with 5% dextrose solution, I didn’t worry about it. Ran some errands, found that my blood sugar was high again, went to the bathroom and discovered that my set had come disconnected. So I snapped myself in, bolused through the pump and figuring that everything was fine, went on my way.

I spent the rest of the afternoon pumping insulin through a syringe until I ended up logging a 403 after a supper that consisted of carb-free crab cakes and sauteed zucchini that could not have had more than 2g of carbohydrates in the entire meal. So I decided the site had gone bad after less than 24 hours in, so I went to change it out.

Well, that explains a lot…

Yup, the cannula kinked. That happens an awful lot. It makes me sad, since it makes it so that very limited insulin comes out of the system, sending blood sugars through the roof. So, I sighed, and busted open the box of Medtronic Mio infusion sets that I had received in my last order because I had heard that they didn’t kink as much and I finally remembered to change. Added bonus, they’re bright pink. So now that’s in and I’m hoping that my blood sugar will come back down.

But all in all, the infusion was a success. Minimal complications, and the cough I had been developing the last week has magically disappeared. With any amount of luck, over the next three days my lungs will clear out and I can actually run. Which would be excellent, seeing as I’m doing my first 5K on Saturday.

I will say though that while I don’t exactly look forward to IVIG sessions, I do look forward to feeling well afterwards. Never before had I known what it was like to feel healthy, and I’m well on my way to feeling completely normal for the first time in my life – or at least as close to normal as one can feel with type 1 diabetes. I have always wanted to be able to run, and my lungs always burned like fire whenever I did. Since starting IVIG, I have been able to do it with minimal chest discomfort – in fact, the pain comes more from my out-of-shape thighs and the knee that I had an ACL reconstruction done on just before my 15th birthday.

Today, I feel like a whole new woman. And I’m looking forward to going out and exercising tomorrow. That will be my last run/walk before the 5K. And I can’t wait. 🙂

Strength in Fairies and Stamina in Potions

What I wouldn’t give for a little more energy.

The perpetual battle, to get out of bed, to go on with my day, to function. The battle to fight infection, to keep blood sugars in line.

The fight to live.

Yet I am somehow able to pull something out, a final vial of the elixir of life, the small glass bottle containing that essential liquid. Shimmering, sparkling, I drink it and am able to carry on for just a little while longer before I am able to rest and recuperate and regenerate my own energy. Sleep and rest, the fairies come and sprinkle magic dust on me and I am able to at least get up and going in the morning. Bright-eyed and bushy-tailed, absolutely not, but I am at least able to function.

Until I hit a brick wall, the exhaustion sets back in and the phial with the magic potion comes back out. Contents consumed, I am able to continue on for a short while. The magic doesn’t last very long, it is quickly used and I am quick to find myself in a state of exhaustion.

The length of effect of that cordial seems to get shorter and shorter. And the amount I have in the vial gets lower and lower.

I frequently wonder just how much longer the potion is going to last. I wonder when the time will come where the fairies’ dust no longer has an effect. I wonder just how much longer I can go before I can’t open my eyes anymore, can’t maintain a vertical posture, can’t continue on.

I fear this more than anything I have ever feared before. The terror consumes me, envelopes me in an electric blanket that is turned up too high. I eventually find myself sweating and burning, and am unable to shake the blanket. Once in a while, I find my strength and break free. I burst out of that sweltering wrap, full of life and confidence. I can take on everything, I am invincible. I don’t allow my conditions to define me, don’t allow them to limit me. They don’t scare me, the future is not one of fear, I can go and take on the world.

But the vivacity only lasts so long, and before long I’m back in bed, hoping for an extra dose of fairy dust, praying that my phial will be refilled with my magical go-juice. Sometimes, I wake up lucky, sneezing from the sparkles, and the vial mysteriously containing more liquid.

And I still wonder how long that will last.

Dancing With Lady Luck

As though the pump failing yesterday wasn’t enough of a scare, Lord Imp got out of bed at about 3 this morning to close the window because he found it to be quite chilly in the room, then got back in, put his arm around me and distinctly said “baby, you’re pretty warm.”

When you have an immunodeficiency, those are quite possibly the scariest words you can ever hear.

So I got out of bed and tried to swallow. Yeah, that hurt. Now my throat has been hurting upon leaving bed for the last few days, but it’s kind of abated as the day went on, so I didn’t think anything of it. I also had a raging headache and my mouth was dry, so thinking I had a high blood sugar level, I went and checked. Result: 111. Okay, it’s much higher than I like, but that’s not the issue here. So figuring I was dehydrated (again), I went and grabbed a glass of ice water. Lord Imp, bless his heart, got out of bed and found me a thermometer. Taking your temperature after drinking ice water isn’t the brightest idea, it came back in the low 96-degree range, so I went back to bed with the intent of double-checking in the morning.

I woke up completely unable to swallow and my right ear hurting. That’s no bueno. Especially when you’re an hour and a half away from the immunologist’s office.

So knowing that your body temp lowers when you’re asleep, I waited about an hour to take my temperature, and it was normal. So I called up the office, told them my situation, and found out that it just so happened that he was in the satellite office just up the road from where I was.

Lady Luck is sucking up to me, isn’t she?

So they contacted him to see what he wanted to do, and I was told to come in. Turns out nothing’s looking infected, but he had no doubt that I wasn’t feeling well and that what I had was most likely viral, so I got ordered to bed for a little R&R for the next couple of days as well as prescribed amoxicillin just in case I don’t improve. Which I had him do as a liquid because I have a tough time with those pills to begin with, swallowing them now is out of the question. So I left the baby at her grandma’s house and now I’m here in bed.

I should probably be doing schoolwork. I’ll get on that here in a few. I know it’s late, but I spent most of the afternoon sleeping, I can handle this.

And to update on the insulin pump issue…the new battery cap came in while I was on the phone with my mother, so I was able to get her to put it in for me. It didn’t work. So I called up Medtronic and they’re sending me a new one, should arrive before noon tomorrow. I also found out that I am able to use my monitor to transmit my pump settings to CareLink.

You have GOT to be kidding me. Thinking that I needed the USB transmitter I have been putting off ordering it because I didn’t want to spend the $60, and all this time I could just have been using the damn blood glucose monitor???? Sonofabitch. Had I known that, I would have been using it this whole time.

I would also have my pump settings backed up.

ATBEPIJT3UP9TEWBUSGNLKGWJPOTWEPOTEWHIO. That’s me rage pounding on the keyboard.

I went into CareLink, and lo and behold, when I clicked on the Minimed icon, it brought me to a page asking what I was using to upload the settings. And there was my monitor, already clicked. *le sigh* Well, I’ve learned my lesson. Granted, I’ve learned it the hard way, but it’s been learned. From now on, I’m uploading the settings. Once a week. So that if this ever happens again (and I hope to hell it doesn’t), I am prepared.

EWIHPATWEIHOGPIG9UTRU9TRU9TE.

No, I’m Really Not All Right, But Thank You For Asking

Lately, I have been finding myself in somewhat of a predicament of a social nature. A common question in our society is to ask “how are you doing?” Of course, whenever someone asks me that, I respond with “I’m fine,” or the more cheeky “well, I’m upright…” On the one hand, it has made it so that people don’t worry about me. However, it has also made it so that people don’t really realise that I am not well at all. On Facebook, you frequently see something like this talking about invisible diseases:

Image

From sodahead.com

I do think that this explains it all right, but it fails to mention that it’s not just difficult to explain to someone what living with an invisible illness is, it’s downright impossible. My boss, unfortunately, didn’t quite get the memo when I called in the day after my first IVIG because I felt like I had been hit by a Mack truck. “I really need you to come in, do you think it might be at all possible?” Buddy, you try getting 25 grams of pure protein in the form of blood products pumped into your veins and let me know how you feel afterwards. It doesn’t help that I had knee problems going into it. I couldn’t even drive myself home, and I went home and slept. As a matter of fact, I slept all through the day I was supposed to work. I really didn’t feel too hot afterwards.

As a matter of fact, it didn’t occur to him that this is a real serious issue until I told him that I can’t work Tuesday evening because I have a pulmonary function test and CT scan starting at 3 in the afternoon. He made a joke about double-checking that my brain was still there, then got bug-eyed when I mentioned that it wasn’t for my head but for my lungs.

“Is it really that bad?”

Why yes, as a matter of fact, it is. Having pneumonia 5 times and bronchitis at least a dozen times throughout your life will do some damage. 

I’ll admit, I’m scared of the CT scan. The x-rays to make sure the pneumonia I had in April was gone were “clear as mud” to quote my primary care doctor. She wasn’t sure if it was yet another round of pneumonia or scarring from the previous two rounds. So, I got put on antibiotics. Again.

Funny how she’s prescribed them to me 7 times since the beginning of the year and never thought to check the status of my immune system.

But I digress. 

The other thing that I’m scared of is sounding like a whining little wimp when someone asks me how I’m doing and I give them an honest answer. Which today would have been “well, my right ear is clogging up again and I’m worried about it getting infected again because it might mean a hospitalisation for IV antibiotics since I just got off a round of super antibiotics for that same ear. I have a raging headache. I’m exhausted. My throat hurts. And I impaled where my upper lip meets my gums with my toothbrush last night and I’m in a disproportionate and increasing amount of pain. I’m also concerned about that getting infected too. But other than that, I’m fine, thanks for asking.”

But here’s the thing: I’m not wasting away to nothing, I’m still standing, still working, still able to form coherent sentences. I don’t look sick. And people really don’t believe me when I say I’m not feeling well. Except for Lord Imp, he believes me.

Sorry folks, but I have not only one but two major life processes that straight-up don’t work. Just because I’m not looking like I’m wasting away doesn’t mean that I’m fine. As a matter of fact, I’m far from it. But I keep on pushing. And why? Because I’m strong, and I take pride in that strength. I’m proving to myself that I have no limitations. Trust me, when I tell you that I can’t do something, there’s a reason for it. It upsets me greatly to have to turn things down because I’m not feeling well. But you wouldn’t know that, because all you see is someone who looks healthy and is turning you down.

Image

Suck my tiny little lady balls

I really wish people would do some research. Yup, they still think I have something with an extra-long polysyllabic name. Fucking use Google. Ignore the several sites that say that I have a good chance of not making it to my 40s, they’re ominous and I don’t like thinking about it. I’m not looking for your pity, I’m just looking for you to understand what I’m going through, even if it’s just a little bit.

Sorry folks, but I’m really not all right.

 

Something Close to Normal

So here I am, snuggled up in my bedroom at my mother-in-law’s house. Baby Imp is sleeping in her Pack-N-Play at the foot of the bed, and I am glancing over to my right to my copy of 1491: New Revelations of the Americas Before Columbus thinking that maybe I should get to reading since I have two quizzes and a writing assignment on the first five chapters due a week from Friday.

In reality, I’m hiding out from the daycare kids.

I’m really trying to continue living life as close to normal as I possibly can, but I can’t help but be just a little more worried about getting sick when I’m around kids. I’ve been around these kids quite frequently for years and I haven’t died yet (obviously), but there’s a part of me that wonders if the next time will be what does me in, if the next illness will land me in the hospital, hooked up to a dozen machines and clinging to life.

I’ve been told on several occasions that I shouldn’t even be alive, and that I’m incredibly lucky. How much longer before my luck runs out?

Despite this fear in the back of my mind over coming down with something that as of late has bordered somewhat on paranoia, I am bound and determined to live life as normally as possible. Which, for the most part, involves being around people, and involves being around kids. Now, I will readily admit that I’m not a huge fan of children who are not my own, and to be honest the PIDD makes for a convenient excuse to excuse myself to my bedroom to avoid the chaos.

Granted, so does the homework that I should be doing instead of blogging.

But despite my determination to continue with life as though nothing has happened, there is still this little voice in the back of my mind that occasionally whispers “this isn’t a good idea” like a seductive temptress looking to get me to agree to something that I shouldn’t be doing. She has Laura Bailey’s voice (Fullmetal Alchemist Laura Bailey, not Skyrim Laura Bailey) and finishes off with a gentle kiss to my earlobe. I know that I should proceed with caution, and yet I press on, barreling forward without a care for what may come, bound and determined to not find myself living in a bubble of fear. Laura Bailey’s sultry voice leads me on because that ethereal temptress knows that this is what I want, what I yearn for, what I fight for, this normalcy that evades those of us who are immunodeficient, the ability to simply go out and to live. And I let her lead me, not because she has presented me with an offer that is just too good to refuse, but because I know that by not living, I am giving in. Giving in to the stigma that surrounds these disorders, that we live in a bubble, that our lives are lived in nothing but fear.

I refuse to allow the fear to envelop me, but I will admit that there are times when I wonder if what I’m doing is the right idea, if walking around the grocery store has the potential to be lethal. In the end, I know that the benefits outweigh the potential risks, that almond milk and cheese just aren’t going to buy themselves. But as I am wiping down the handle of the shopping cart with those Purell wipes grocery stores are now offering with some level of ubiquity bordering on fanaticism, I wonder if it is all for naught. Why wipe down the cart handle when someone in the baking aisle could possibly cough in my general direction while I’m fuming over the fact that once again they’re out of coconut flour, possibly transmitting whatever microbe is residing in their air passages and making me sick as a result?

In the end though, I have to go out to the store and buy that coconut flour, partly because I need it, partly because Lord Imp looks at me funny when I bring it home, and partly because I just need to be normal. And as far as I’m concerned, wiping down grocery cart handles and running the risk of another case of pneumonia are perfectly normal.

Sidenote: I still haven’t downloaded Dawnguard to the computer ever since Lord Imp noticed that Serana was voiced by the same person who did Lust. I just can’t look at that character the same anymore, and I now avoid the quests on the Xbox as well *shudder*.

 

 

 

To Be or Not To Be…Disabled

To be, or not to be? That is the question—
Whether ’tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles,
And, by opposing, end them? To die, to sleep—
No more—and by a sleep to say we end
The heartache and the thousand natural shocks
That flesh is heir to—’tis a consummation
Devoutly to be wished! To die, to sleep.
To sleep, perchance to dream—ay, there’s the rub,
For in that sleep of death what dreams may come
When we have shuffled off this mortal coil,
Must give us pause. There’s the respect
That makes calamity of so long life.
Hamlet III.i.57-70
 
Today I read a rather interesting article on the BBC News website discussing putting a label on disability discrimination. Which got me to thinking about a question that has been in the back of my mind since childhood:
 
Am I truly disabled?
 
By law, yes, as a matter of fact I am. The Americans with Disability Amendments Act of 2008 broadened the definition of the term “disabled” to include anyone with anything that can “substantially limit one or more major life activities of such individual” and further goes on to define “major life activities” as, among other things, endocrine and immune systems.
 
So, the good news is, I am protected by law.
 
But it does beg a question above and beyond laws and definitions: am I really disabled? The law thinks so, but the true measure of disability, in my mind, is whether or not I perceive myself to be disabled. I will admit that it’s an idea that I have struggled with for most of my life, this “to be or not to be” of sorts that people like me battle with on a daily basis. We are just fine on the outside, we look normal, and go about our daily lives with as much normalcy as possible. But inside, we are malfunctioning, a strand in the genetic code has tripped somewhere, and the entire system downstream has been thrown off. 
 
I don’t always feel good, but normalcy is incredibly important to me. I don’t like people perceiving me as being disabled – that only leads to discrimination, pity and misunderstanding. But at the same point in time, I do find myself having limitations, and I have to use the disability to explain them. While people like me are no longer in a legal Catch 22, I think we often find ourselves in this personal one of sorts, debating between carrying the label of “disabled” around our necks, or casting it aside and dealing with the consequences.
 
Although we have all been taught that Hamlet is discussing suicide in his soliloquy, I think that it has equal congruence with this situation. Do we sit alone and suffer in silence, living in our houses and rooms, afraid to go out into the world and experience life? Or do we get out, go and do things, despite the dangers and the spears of infection that can pierce us and ultimately put us back into bed? In my opinion, seclusion and fear are comparable to death just by virtue of the simple fact that it is not living. So, do we cave fully into the idea of the disability and isolate ourselves from the world out of fear of getting sick, or do we grab life by the horns, go out and just be normal?
 
Do we live or die?
 
Of course, Hamlet paints suicide as the more courageous and noble path, and in my mind he is debating between emotional death and a physical one. But he does later bring up an interesting point when he addresses that even physical death will bring sleep and sleep brings the evil thoughts that haunt him. To Hamlet, either course of action is an evil, and it is up to him to chose the lesser of the two. In the end, (SPOILER ALERT…and if you came across this because you’ve Googled the play because it’s been assigned in your high school English class and you’re too damn lazy to read it yourself…stop being lazy and read the damn play) Hamlet chooses life and lives to see the end of the play, even though it’s a life full of mental anguish.
 
I think this is a valuable lesson for all of us living with these so-called disabilities – go out and live life to the fullest. Don’t let a fear of illness or low blood sugars or getting hurt or even ridicule stop you. In doing so, you are choosing death. Go out and live. Smell the roses. Kick around a soccer ball. Make friends. Fall in love. Start your own company. Do whatever you dream, whatever your heart desires.
 
Just LIVE.
 
I don’t consider myself to be disabled. The question you need to ask yourself is, do you?