I’m Not Dead…Yet.

I just haven’t been able to do anything except study and squish fruit flies.

I haven’t even been to church in…forever.

That’s big.

I’ve struggled to get out of bed, struggled to keep going, struggled to do everything that I need to get done.

I just want to sleep.

All.

The.

Time.

My throat is also slowly progressing to an unable-to-swallow level.

I just want one day where I feel normal.

ONE.

DAY.

But…I’m not dead.

Yet.

Invisible Disease Friday

I really needed a day off.

As each day went on, I had been getting more and more worn out, more and more unable to get up when laying down, more and more exhausted. So a couple of days ago, I decided that since one class was done and the other two were doing finals reviews, I was going to take today off, sleep in, be a lazy bum and not take care of anyone but myself.

Instead, I got stuck carrying the baby down the full flight of stairs that lead to my front door to take her to daycare so I could have a day alone. I got stuck going to campus and taking care of some missing equipment out of my drawer in chem lab. And out of the goodness of my heart I made a lunch run for Lord Imp, who is feeling crappy and I knew was going to need to eat.

And now all I want to do is cry. Because I don’t get to take care of myself and only myself.

All I wanted was 36 hours of not doing anything – not getting out of bed, not cooking, not cleaning, not doing homework and not taking the baby. Instead, I got out of bed at 7:30, struggled down the stairs, took care of the baby for a bit, took a nap, woke up and struggled up and down the stairs several times, struggled to get the baby changed and dressed, struggled to get her in the car seat and prayed as I teetered precariously down the stairs carrying her to the car. In the middle of all that, I had to deal with listening to Lord Imp bitching about how tired he was and how he didn’t feel well.

I really wanted to scream this, but didn’t. So I’m going to scream it here:

WELCOME TO MY WORLD.

I am tired ALL THE TIME. It is not uncommon for me to wake up and legitimately wonder if I have the physical capability of getting out of bed. It is not uncommon for me to not be able to move without an exceeding amount of effort. It is not uncommon for me to fall asleep in classes or want to take naps.

BUT I STILL GET STUFF DONE, and with minimal complaining.

I still do laundry. I still do dishes. I still make the baby breakfast and get her dressed. I still vacuum. I still go to class. I still study. I still do research. I still go to work.

EVERY SINGLE DAY. Despite feeling the same way you are (minus the congestion). My head is ALWAYS foggy. I am ALWAYS tired. And I am ALWAYS woozy.

BUT I STILL GO ON.

Don’t EVER mistake the fact that I am still plugging on without complaint as that I am fine. I AM NOT FINE. I am only moving because my options are to keep going or to die.

And I would kinda like to keep going.

The sad truth is, I’ve been taking spoons from the next day for a while now. And today I woke up with very few of them. And instead of trying to regain my spoon count, I spent today spending them.

I sent a copy of the Spoon Theory to Lord Imp. I hope he finally gets it.

</rant>

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.

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.

Major League Fail

In my stalking of my Twitter feed (because I’m less than interested in doing homework right now), my attention was brought to an article about Major League Baseball donating $300,000 to Amyotrophic Lateral Sclerosis organisations on the 75th anniversary of Lou Gehrig’s “Luckiest Man” speech.

Not gonna lie, I LOL’d reading the article.

Before you brand me an evil person and send me away to be tried as a witch and burned at the stake, let me throw some numbers at you. If I’m reading the article correctly (and I’m really hoping that I’m not), it looks to me like this $300,000 is going to be split among four different organisations. That’s $75,000 each. To the MLB, that’s the equivalent of digging in the sofa cushions for change to throw in a bucket carried by a Boy Scout. 

To add insult to injury, according to mlb.com, the minimum salary of a Major League Baseball player is $500,000 for 2014.

So what you’re saying, Major League Baseball, is that research and aid to organisations in support of Lou Gehrig’s Disease is worth less to you than the guy sitting on the bench batting sub-.250 with 50 ABs and 10 Ks. I cannot think of anything more insulting.

“Oh, but all the teams are looking to bring awareness to the disease! Putting our faces out there will bring in more donations, raise awareness, and allow for more focused research!” True story, but let’s face it folks, people knowing about ALS doesn’t fund research. People knowing about the disease doesn’t pay the salaries of researchers, doesn’t buy equipment, doesn’t help fund programs to help those fighting the illness. It doesn’t build ramps, doesn’t help provide care, and doesn’t pay for special fun outings.

Money does. Thanks for the $300,000 but seriously, that’s nothing. The benchwarmer makes more money than that. And your little donation of what is less than minimum wage in Major League Baseball is, to put it bluntly, fucking insulting.

So here’s the challenge I present to you, oh big-wigs at MLB: I challenge each and every one of the 30 teams to donate $600,000. Prove to people suffering from ALS and their families that they are worth more than minimum wage. EACH. AND. EVERY. TEAM. Stop  being insulting jerks, with your pocket change and your smiles, thinking that this insulting donation is good enough. Truly show that you are committed to ALS research and to finding a cure, and to bettering the lives of those with it. While your executives are sitting in their luxury boxes, sipping mai tais and watching the game, how about throwing a little extra cash the way of these organisations who you claim to support.

Actually support them. Put your money where your mouth is. And pay Lou Gehrig more than minimum wage.