Importance of Bringing topics up to your doctors: if it’s ‘off label’, odds are they won’t bring it up to you.

I just wrote this in a comment section in Facebook, in response to a comment about why I suggested IVIg for someone.

Most people don’t understand the legal and insurance company pressures doctors are under every day, and it’s not that they don’t want to offer the best medicine to their patients, it’s often that they feel like they can’t — the insurance company will hassle them or the fear of being sued—

It’s just safer to play the ‘standard of care’ game, even if there are much better options out there…

The only way to know what I know is because I’ve been neck deep in medical industry hell for almost 15 years. This is my way of thanking the world for still being alive—sharing what I’ve learned a long the way 🙂


D Lynn You’re correct, and IVIg isn’t even confirmed as a treatment for myocarditis or pericarditis, I just suggested it as something to consider…we obviously don’t know all the facts of the case, but in my experience with medical professionals, I’ve learned if there is a potential treatment that’s expensive that insurance won’t cover, doctors almost never even mention it for discussion.

(They assume either patients either can’t afford to pay for it, or the doctor doesn’t want to deal with the potential legal liabilities of an ‘unproven’ treatment. That’s why it’s important for people to bring up various treatment options with their doctors—because when we as patients mention different treatment options, doctors will then at least have the discussion with you. And if you trust and know your doctor well, then they might even order it—even if it looks like insurance won’t cover it.)

Most of the general public doesn’t realize that doctors do not bring up all of the various treatment options, partly because they don’t have time, but also because they assume most patients don’t want to hear about 5 different options—especially ones not covered by insurance. That’s why it’s important to initiate conversations, especially for something as critical as inflammation of the heart…

Posted in Uncategorized | Leave a comment

I *love* this: “Angelina Jolie says she loves getting older because it means she’s alive. ”

Wow—I’m not a celebrity chaser, but I absolutely love this sentiment. She’s completely right, that it’s a gift to be able just to grow old, a gift many people selfishly take for granted.

I remember once when I told my grandfather how sad it was that he couldn’t travel the world as a pianist, because he was extremely talented at the piano. Extremely talented. In an age where boys didn’t play, he used to sneak into the back door of the piano teacher’s house so he could get lessons without the chitter chatter of small town politics.

And when I said how sad it was, that he never pursued those dreams,

he instantly shook his head, completely at ease. Then he said, very peacefully,

“When I was young, there were five of us who used to play together in our small town. We did everything together, we were close from the time we were born. So when WWII started, we all went to war together….

And I was the only one to come back alive.”

Then there in his eyes, he smiled at me, his eldest granddaughter, the oldest of 7 granddaughters, all of whom he got to see born and live into adulthood, soon to be ready to start families of our own.

And I never forgot that moment. There is nothing more important in life than love and friendship, the rest of it—all superficial in the end…

Posted in Uncategorized | Leave a comment

Noah: A Note for your Future. A survival note of Hope.

I’m writing this letter to my son David Noah in the event of my death and positing it here on my blog, because I know he doesn’t read it but it will be here for him when he’s ready one day to read it.

That’s why I’ve kept this blog all along…even though it’s not thorough (I can’t write about being sick every day…it’s enough to live it 🙄), and I don’t advertise or tell people about this blog (so no one reads it),

but I’m keeping this blog for my son Noah. So that he can hopefully find answers one day to questions he may have when I’m no longer around to answer them.

And the rate I’ve been going these last few weeks, I can barely get out of bed I have so many infections at once (and of course no fever or elevated wcb…),

not being around might come sooner than later, so I feel like it’s important to write this letter…


Dearest Noah,

I’ve been thinking a lot about how to best approach your future, and when I think about trying to find the right words or how to even start a conversation like this, the first thing that keeps coming into my mind is the word hope—

Medicine is getting better every day, leaving me *no* doubt that someone, somewhere, one day will solve this in your life time—

And more importantly, I feel like if we develop the right plan for you, of diet, lifestyle and vitamins/medications, there’s hope for a much more normal life than I ever did—if we can just build up your body up and support it in better ways than I did—

For example, your sleep schedule. We’ve been talking about this a lot lately. Your latest bout with pink eye has been a reminder that must get sleep. Teenage angst and all night study sessions are not in the cards for you and you must manage your time accordingly. Once thing I’ve often commented to Dr. sherman, in my observations about myself, the one thing about my twenties, is that whenever I did work a full time job — meaning, I wasn’t in college or graduate school where I had flexible hours — whenever I had to be someone early and work 8+ hours a day for weeks on end I always got sick.

Not right away, but within 6-8 months I would get really sick. I would get pneumonia.

(Except when I was pregnant, but that’s because my ‘boss’ was my soul mate, and let me sleep on the coach whenever I needed to, allowing my immune system to continue to compensate for habits that I had kept me from getting sick all the time in college—)

I’ve had been thinking a lot lately about the importance of medicine and lifestyle habits—-because I’m always saying how you have what I have, but you have it worse then me—


because you’re being more closely followed medically than I was at your age (for example, you’re actually on daily antibiotics, etc),

Clinically—you’re actually doing **better** than I was at 15 years old.

Yes, you’ve had a few breakthrough infections this school year and a brief hospital stay with the flu,

but when I was a freshman in high school, I had more serious infections, and I was just months away from repetitive strep infections that led to my tonsils coming out, several bouts with bronchitis, pneumonia, yeast infections, appendix out with an atypical presentation, not to mention the strange E. coli infection when Dr. Pamela Zarick pulled my mother aside to tell her something wasn’t right—insisting it wasn’t normal that I didn’t have a fever or elevated wcb even though I cultured positive for a severe ecoli infection—

As difficult as life is right now,

the water was actually rockier for me at 15 years old than it has been for you.

And that’s a good thing—-a **really** good thing—

Because what that means,

is that if you continue to stay on top of your daily antibiotics, if you develop a diet and vitamin regiment that supports your immune system (cod liver oil, vitamin B, etc,

and most importantly,

you adapt your lifestyle to be slightly different for your peers—like account for the fact you *must* get a lot of sleep, and that sleep is more important than homework—

Your path in life might continue to be less bumpy than mine was for many more years to come.

I have no doubt the you’re going to need IVIg at some point. Zero doubt. It’s not a cure-all, and it definitely doesn’t raise our wcb or induce a fever,

but it’s one of the best things modern medicine can do to help boost the immune system and it’s changed my life dramatically since I’ve been on it.

Yes, I still suffer a lot, and yes, currently I have perhaps more funky infections that I’ve ever had at the same time, ever, before in my life

(My neck infection, possibly a leg wound infection, bronchitis, and I currently have secondary Vaginal and throat thrush galore 🤢),

but there is no doubt IVIg has helped keep me afloat these past few years, has kept me able to fight—kept me moving forward—

where I would have sunk months ago completely without IVIg. (My doctors saw me go under a lot without IVIg too.)

I know it’s going to be scary if I can’t make it through this storm of infections—I see it in your eyes, that you understand how sick I am perhaps even more than my doctors right now—You understand that there might just be one too many waves in the storm for my body to handle it, and that my boat might finally capsize—

And if it does indeed capsize —

I **dont** want you to see it as a moment of defeat.

I want you to see my capsized boat as an opportunity to learn.

You’re going to do much better than I ever did,

because you have records together in one place. You have a godfather who loves you and is looking out for you. You have doctors who’ve know you since you were a baby, so one problem here and one problem there, aren’t being ignored because I had thirty different doctors and no one keeping continuous records.

You’re going to be okay, and even more than that, you’re going to thrive. You’re going to thrive until medicine solves this for good,

then when it’s solved for good you’re going to be even stronger than a normal person because you’ll be able to use all of that built up energy from being fixed to help other people like you.

But this is how you need to do it. Important Noah. This is my prescription from Dr. Mom to you 🙂

1. Stay with doctors who know you. I know you know that, but as Dr. Hansen said at the NIH, it is absolutely **vital** in your case so I have to say it again. Like that shot of IV Rocpehin in the ER when you had the flu. Most pediatricians wouldn’t have done that, but i have no doubt it helped you get through it because it protected you from developing secondary bacterial infections. And it happened because the doctor knows and trusts you.

2. Build a strong lifestyle, medication and vitamin/supplement schedule to give your body what it needs to help stay afloat. Vitamin B, vitamin D, cod liver oil, daily antibiotics, etc. Stay on top of all of this like it’s an oxygen tank you must fill every day.

3. Don’t lie to yourself about your situation. Ever. Don’t bury your head in the sand because it’s so much easier to believe you’re normal like everyone else, instead embrace your immune deficiency directly like a dragon you know and be grateful you understand your dragon when other people get blindsided and don’t get a chance. Normal people die young all the time because they didn’t think they could possibly have anything serious like cancer, be grateful you understand how fragile life is and you’re going to face it head on with an army of good doctors, intelligence, intuition and faith. Faith in yourself. Faith that you will find the help you need when you need it. Faith in what you know and feel about yourself, and faith in what you’ve learned will protect you in the future.

You’re smart, kind, sensitive and charming. You will go on and accomplish great things with your time here on earth,

(**write those dang books Noah 😜👍**)

but every day **must** begin with taking the steps you need to fill in the holes in your immune system until they’re solved. Steps that might be annoying, steps that other people don’t need to take, steps that some people might not even believe you need to take because you look so healthy,

but steps you need to take so take them.

You’re already doing better than I was at 15 years old Noah, and that’s a really good sign. It means that medicine and due diligence and wrestling the dragon head on is *working*.

Just if something happens to me, don’t slide back, as tempting as it is will be because I won’t be around to remind you of it’s importance, and others won’t remind you because you look so normal.

And we always look normal.

It’s a blessing and a curse.

Just remember to honor what it is you need to do for yourself every day, maintain relationships with doctors who understand,

and you will stay strong enough until medicine catches up and fixes it.

And the person who fixes it, might even be you Dr. Noah. It might even be you 🙂 Or your friends. I know medical school isn’t your dream but unless you find a way to make millions of dollars (which I admit you might :), but unless you’re wealthy, going to medical school will help protect you.

Your closest friends will become the people who can save you.

You will make it Noah. And I will be so proud of you. This is what I have fought so hard to stay alive for these past ten years, I have fought for this moment. To live long enough for you to have the information you need to live a long and prosperous and fulfilling life.

Even if my boat capsizes tonight, I made it Noah. I’m grateful and happy. I know you will be okay. The struggle was worth it.


Posted in Uncategorized | Leave a comment

The wound doctor doesn’t take my insurance — do you really think I need to see him?

Hey Cathy,

It turns out the wound doctor doesn’t take my insurance, and it would be $350/visit (I used to see Cash doctors in the past, but it’s something I’ve eliminated unless absolutely urgent). Noah has a trip for school that’s kind of expensive this month too, so I’m trying not to spend money on anything unless super urgent.

I think it’s healing better — this is how it looks right now 🙂 I think the red is starting to fade a little—

I trust your instincts though…if you think it’s super important I’ll go, especially since I have bronchitis (which is also getting better, though I’m still coughing up phlegm).

Tara 🙂

My wound right now:

The wound on Sat March 10th. I think it looks a little crustier here, and darker red too. Just slightly though. This thing is taking forever to heal. Normally I heal quickly from cuts. Frustrating and scary, but I think it’s finally getting better…

Posted in Uncategorized | Leave a comment

This is what my leg wound looks like right now

I don’t understand why it won’t friggen heal.

Top picture take just now (March 10, 2018), the other photo dates below.

Maybe it’s looking better (?). Hard to tell…

Posted in Uncategorized | Leave a comment

I have bronchitis

I feel like it has something to do with the problem with the incision on my leg.

I haven’t coughed up this much phlegm since I was a teenager and used to get bronchitis and pneumonia all the time.

I wish my leg would get better. I wish I would feel better,

but I’m grateful to still be alive.

Posted in Uncategorized | Leave a comment

Noah is struggling to get over this pink eye infection

His eyes are worse. If they still look bad on Thursday, I’m going to take him back to see Dr. Crosby, but I just wanted to let you know because this is not normal, even for Noah.

(He’s been on eye drops now since the day before he saw Dr. Butte, which is over a week ago now.)

This is definitely a warning, and I feel like it’s time to start Noah on a low dose of IVIg. We will never get the ‘evidence’ in his blood work — which is the same for me — because the problem isn’t abnormal Ig levels…the decision comes out of observation and instinct, and honestly things are getting worse for Noah. I don’t want to wait until Noah is really in the hospital with something really bad.

Plus, it will help with Noah’s weight. He’s severely underweight, and Ivig will help with that too…

(I have a home health nurse who had a patient who did 5 grams every month, just because she swore it helped her. She had a normal immune system, she did 5 grams because she did it gave her more energy. Since IVIg is very expensive, I was thinking 5-10 grams a month, until Noah gains a few pounds, then we can revisit it.)

We’ll talk about it next time, I just wanted to give you the heads up about Noah’s eyes. This is not normal, even for him.

(Maybe because his white cell blood count is so low?)

Thanks again for everything.


(The infection started in one eye, then it moved into the other eye (Dr. Crosby saw it more in the left eye, and she also noted Noah had some drainage at the back of his nose as well. Now Noah’s eyes look even worse. He’s had pink eye so many times over the years. (At least 50 times). Maybe this infection is something resistant, which is why it’s not responding to treatment like they normally do? I’m hoping it’s going to go away soon…)

Posted in Uncategorized | Leave a comment