I never know how to fill out all of this paperwork

Filling out radiology paperwork is so hard, because of my immune deficiency I don’t create a normal inflammatory response…what they means, is that a subtle change on an imaging study might actually have more significance for me than a normal person. A small change usually means a big problem, a problem a surgeon then can correct…

It’s been such a rough last few weeks, the stress is starting to get to me…bad stress for too long is a like a train wreck coming on the horizon. Most people don’t understand how precarious every day of my life is because of this…I’m just grateful to still be alive.

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Letter to the editor I wrote: sometimes handicapped people look normal

I’m so f***ing tired of people being so quick to judge people who ‘look healthy’, without taking a moment to ponder the *numerous* painful diseases someone might have where a patient can look normal…

***

Letter to the Editor:

Sometimes a person can look remarkably healthy, yet they suffer from a serious and chronic illness. We as a community should always choose compassion and understanding in our policies and judgements.

I’m writing in response to the Editorial published on August 4th, in regards to resident who wrote of the perceived increased in handicapped parking placards by those who are not handicapped within the Beverly Hills community.

While I can’t speak for everyone who has a handicap placard, I can say if you saw me on the street, you would think I was a completely healthy 40 year old woman. I look healthy, I sound healthy, and yet I suffer with horrendous medical problems, which cause debilitating chronic pain, including Multiple Sclerosis.

I do walk my dog, on the days I can, and I do get in out of cars seemingly with ease.

But every step I take–every moment I breathe of every day–is a moment of pain.

I have a lot of pride…perhaps it’s my Scottish heritage, perhaps it’s simply my ego that prefers to spend whatever moments I can of my life, even if it’s a moment with a stranger, enjoying perceived as a normal person, so I do hold my head high while in public. I don’t want people to feel sympathy for me. Everything that can be possibly done to help me, is being done by my doctors at Cedars-Sinai. I hold my head high.

Perhaps one day you will see me hop out of a car with my blue handicap placard. Maybe you will turn your face up and roll your eyes and judge me.

But make no mistake–I am not normal.

In order to get a handicap placard, a patient’s physician has to sign approval for one, including putting their California State Medical license number on the form.

I’ve been very ill for over ten years, I’ve meet hundreds of doctors, and I can say with absolutely certainty I haven’t met one physician who would sign off on a handicap placard if they didn’t genuinely believe the patient could benefit from it.

This doesn’t mean that there aren’t people who ‘borrow’ the placard from a friend, and perhaps there could be a way to better ensure the placards are being used by the correct people.

But we must be very careful not to judge people who look healthy on the surface, because you don’t know what struggles that person went through just to get out of the door.

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Scientists Reverse Brain Damage in Drowned U.S Toddler Eden Carlson

Wow–how cool is this!

https://uk.news.yahoo.com/scientists-reverse-brain-damage-drowned-103904358.html

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C2 gene deletion as possible source of immune deficiency

Dear National Jewish Hospital,

I’ve been trying to get to the source of a primary immune deficiency that affects both my son and I.

Researchers at CHOP discovered that we share a C2 gene deletion, so a few days ago, my son David Noah, had blood sent to your lab for C2 and C3 function testing.

Depending on the results of these tests, I was wondering what the next step would be. David Noah and I have had a lot of strange results to different immune studies, but nothing has pointed definitely to the answer.

For example, David Noah had a strange result to the ALPS test that was done at Cincinnati Immunology lab. He did not test positive to that disorder, but he didn’t have a normal result either. Every equation with a C3 was not a normal result. We also had a strange result to the Wiscot-Aldrich test. (Neutrophils were below normal).

We’ve also had low natural killer cells, but not dramatically low (sometimes just below normal), same with T cell results. Some of our complement blood tests have been abnormal (I can’t remember which ones). David Noah has also had to have extra pneumococcal vaccines because his levels drop faster than normal.

David Noah is currently on daily antibiotics due to reoccurring infections, particularly sinus and skin infections, and my health problems are too extensive to list in one email, but they involve both autoimmune and infection problems (countless hospitalizations) dating back to when I was born.

Notably, we get infections and we don’t create an elevated WBC or a fever. Our WBC does rise a little–meaning, our immune system is responding to an infection–but it just goes up to 6-8, versus normally being around 4 (and sometimes even lower).

After reviewing your website, it seems like your hospital is very invested into rare immune deficiencies, partly complement disorders, so I’m excited to get the results of his C2 and C3 function test that were sent by Dr. Wong/UCLA last week.

If you have further questions, you can contact me, or David Noahs pediatrician Dr. Lauren Crosby 310-652-5004, she is very familiar with our case.

Thank you very much for your time, it’s been a long journey. I really appreciate your help.

Warmly,
Tara

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And they got the blood…

David Noah was become an old pro getting his blood drawn. I just hope these are the right tests. I think it is a complement problem, the question is where on the chain of command is the problem 🤔.

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On our way to UCLA: C2 function test here we come!

David Noah and I are on our way to UCLA to have his blood drawn. 🙏

Hopefully, this is the answer and we’re done. There isn’t a cure right now for complement deficiencies, but there is treatment, IVIg and antibiotics. The key is prevention and jumping on any minor problem so it doesn’t become a major problem (like what’s happened to me numerous times over the years 😳).

We’ll know in 6-8 weeks….I’m guessing if these results come back funny, they’ll want another blood sample to confirm, but we’ll start to see a sign in a few weeks…

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Genetics follow up

Rebecca,

Thank you very much for placing the order, and yes, that’s correct I would like to do the C2 and C3 functional test for David Noah.

Since these specimens need to be shipped, I’ll take David Noah to the UCLA lab on Monday, June 26th.

Let’s go ahead and I will pay for the test at the lab, especially since the results take so long…

I’ll call David Noah’s immunologist (Dr. Rita Kachru) to see if there any tests she thinks we should add to this list–since the results take so long, I’d like to do as many as possible right now.

Thank you very much for your help! I really appreciate it.

Warmly,
Tara

323-251-2026

On Jun 21, 2017, at 6:16 PM, Signer, Rebecca H. wrote:

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