Speedy Gonzalez

I am so extremely fortunate to be able to run my IV so fast. Makes it much more manageable. :-)

The Weight

I am naturally a fixer, a people pleaser, and someone who just wants to see other people happy.

That's the worst part of living with PIDD for me. It's not about what I feel or how I think about the dreams I've lost or the life I never had, at least not most of the time. The thing that bothers me more often is seeing those I love suffer. I watch them from afar, wishing there was something, anything, I could do... It is a big deal for me to be able to acknowledge that and try to let some of it go.


Letting it go is not easy for me. A dear friend is in a hospital right now where she should not be, where she should never have been in the first place. Due to what I feel is medical malpractice, she was left with minimal IVIG replacement and no one investigated. None of her doctors were bothered until she contracted several strains of mycobacteria. She will have permanent damage from this infection. IF she survives it. Sure that sounds morbid, but that's where things are right now. My friend's life is on the edge of a knife. She just spent 18 days in a hospital. She was released and re-admitted for severe GI tract problems within 36 hours. This makes me so angry. So unspeakably livid. WHY did none of her doctors investigate protein wasting when she could not hold on to her IG product? WHY?!??!?! Various forms of enteropathy are extremely common among CVID patients. Meanwhile, she's been symptomatic for months (sporadically, but STILL).

So now she's in a hospital fighting to figure out what's going on. Fighting to remain stable. Fighting for her life. Again. It's really not fair to her. There's really nothing I can do to help her. I would rather see her in a large medical center. I would rather see her getting evacuated to the National Institutes of Health. Why don't her doctors see the severity of her case? She shields me from it, but I can tell and I'm hundreds of miles away. Why must their professional hubris stand in the way? Why why WHYYYYYY!??!?!?!

I need to believe in a Christmas miracle. Pray for her. She deserves better.

An Ode to Nasonex and Symbicort

Sorry I've been neglectful, but life has been... intense.

Today's blog post is about my love for my winter regimen. I always forget how much better I feel when I do them once the weather gets cold and dry... I sleep better. I feel more energized. It's amazing.

So this song goes out to Nasonex and Symbicort. My life really would suck without you.

Eyeball Update

Ok, so I haven't been the most compliant when it comes to certain life functions... like getting my eyes checked for hydroxychloroquine retinopathy like I'm supposed to. Part of that is because I tried to find eye doctors I actually liked that were competent and that was easier said than done. One didn't have the machinery, another did a half-way job and had a super crowded, loud waiting room... and made me wait an hour and a half before even getting called back to wait some more for the doctor. I was slightly traumatized by that last one, so I had to summon my courage and find a new opthamologist.

I did! Finally went in yesterday. My eyes are apparently in wonderful shape. No issues at all. Everything normal. HA! That's a phrase rarely associated with anything in my medical sphere. I'm proud of myself for putting on my big girl pants and going.

This doctor made me sit and look into a machine for what seemed like forever to check my field of vision. Then she tested my eye pressure and did an examination of my retina and my macula to ensure that there were no complications or signs of retinopathy. ALL CLEAR! Now I have a follow up in 6 months that I certainly intend to keep. Yay for new doctors actually being competent and pleasant.

My Achy-not-so-breaky Heart

So my heart issues discussed previously are all related to premature ventricular contraction.

I don't need medication for it.

I can apparently live with it, as it isn't dangerous.

But it IS annoying. If it doesn't improve, I may need to go on meds just for my own sanity.

Goodbye, Little Friend...

... AND GOOD RIDDANCE! That thing got so annoying by the end. I still think it is an amazing device, but I'm sure glad not to be wearing one anymore. I accidentally miscounted days and took it off after 13 days, but I'm pretty sure that will be ok.

I am not so much looking forward to the next steps in the process or trying to go get a chest xray now that the doodad is gone.

I really don't want to have a stress test. I don't want an echo. Don't want, but have to. HARUMPH.

Flu Vaccine Made Me Sick!

Ok. No. No it did not. That's not how the flu vaccine works. You can't get sick from the dead virus. You can have some discomfort and such, but it did not give you the sinus infection or whatever you think it gave you. I have just seen too many folks on my facebook and twitter feeds talking about how their flu shot MADE them sick. They report it on the news as though these subjective stories are fact. Unless you have the flu strain that they shot into you, you definitely didn't get it from the flu shot.

There is loads of scientific research that backs me up in my assertion. There is zero credible evidence that supports your "flu vaccine made me sick" argument. Sure, you might get a fever or something, but that means the vaccine is actually working. Your immune system is pumping up to learn about the new buggies your doctor injected. Isn't that cool? I can answer that for you. It definitely is.

I understand that some people have a harder time with vaccines. Some people have allergies. The allergy folks get a pass from me, actually. Don't get a flu shot if you are allergic to its components. Otherwise, even if you get a mild reaction, get a flu shot. You'll protect yourself and those around you. While you're at it, throw in a Dtap if you haven't had one recently. Especially if you know/love/are around children or the immune compromised. Whooping cough is no joke and the numbers are on the rise.

Anyway, back to the flu vaccine. Where do you get the flu vaccine? Doctor's offices. Where do sick people go to get medicine? Doctor's offices. Not a coincidence.