I keep having dreams there’s no hope

I keep having dreams there’s no hope. First dream (a few weeks ago), you told me never to mention his name again in your office (I was too embarrassed to talk about it.) The second dream (just a few minutes ago—I just drifted to sleep and then had this super vivid dream—),

I was pleading my case to wife (Jodie—weird I know—), I was trying to explain how rare my case is and how there simply isn’t another doctor who is willing to help me get the answer (and god knows I’ve tried to find one).

In the dream she listened with a ‘I don’t like you and I ‘don’t have time for this’ kind of face, but I felt she had a tinge of compassion even though she didn’t want to give me any.

This is what I took away from the dream: even if I’m right, and once upon a time he did care, and once upon he did think about me—and in the dream I even pointed out the phone call in 2011–

but what I got from the dream is that his entire inner circle doesn’t want him to help me, so even if let’s say he thinks about it from time to time, that wall is too strong.

They didn’t go to medical school, so they definitely don’t care about weird cases and they sure as fuck cant understand why there isn’t there isn’t another doctor because unless you’ve lived with a rare disorder, there is no way to understand the hell patients like me go through and how rare it is to find any doctor willing to help us.

So such that it is…

And even weirder about this dream? Peter said I was asleep for only a few minutes. I think the same episode of Blue Bloods was even still on (my new favorite show), but the dream was so clear…felt like an hour…

I pleaded my situation…my son…”will you please talk to him on my behalf?? Please?’

And such as it is.

You know I’m not going to live through this neck infection. Dr. Pitchon is starting to think the infection is gone (he didn’t say it but that’s what I’m sensing), but he’s wrong— it’s still there.

What that tells me, is that it means if all of Dr. Pitchon’s years of experience tells him that this infection should be gone by now — and I know for sure that it isn’t —

That means this is the one.

That’s why im so desperate to try and get this business set up for Noah as fast as I can…trying to get the framework built, so Noah can come home from school, make products, send them to Amazon, etc…the hard part is getting it all started…

Perhaps the dream was my last plea too. Perhaps the dream was just there to remind me his life is so different from mine sometimes I forget a strong support system is a double edged sword…you have to make decisions to make them happy too…since I’ve never really had that kind of family support, I often forget there’s that side of it too…

Thanks for everything.

Tara

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28 December, 2017 05:47

http://support.premierincomegroup.com

Rita Kachru

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“Are you sure you’re qualified to do this?”

I just changed Noah’s saline bag in the middle of the night, and as I was doing it, he woke up in daze and asked me,

“Are you sure you’re qualified to do this?”

Well, um, considering I’ve done changed bags to IV tubing and connected over a thousand times on myself, I’m not sure what more I’d need to do to become more qualified (I even wore gloves, wiped the IV entrance with an alcohol pad, etc—),

but Noah’s right in some ways—

It’s scary to do it on your own child—I must have checked ten times everything over before connecting it all back together, even though I could’ve probably done it in my sleep—

But it’s just not the same when you’re doing it for someone else—especially you’re own child—

Since I was up (I’m starting to get a bad headache—might be coming down with Noah’s flu 🤢),

so I decided it was best to keep the drip going on him, and I figured it was about done and i was right (there was less than 100c in the bag he had hanging). If Noah wasn’t so underweight I wouldn’t be so nervous, but because he’s so skinny I don’t want him to be without continuous fluids until he’s past the worst of the flu…

(It’s not dripping super fast, just 60cc/hour, but enough to keep him hydrated for sure—)

His cough was bad again tonight. It finally subsided after he felt asleep, but he couldn’t stop coughing. He insisted he didn’t want me in his room with him, so we compromised by keeping his door open, and I could hear his coughing from my bed.

Since he threw up the Tamiflu, Noah wanted to me to call a doctor and ask them about a different antiviral, but it was late Christmas Eve and I thought the worst was over and he just needs to ride it out now anyway. I told him he could take the Tamiflu again but just eat first this time, but you know Noah—no way he wanted to take it again—

So we had to have a little talk about when to bug your doctors//picking and choosing your battles. (I admit I’ve terrible about this myself sometimes :),

but Noah should learn from the mistakes I’ve made, and google sometimes is everyone’s friend 🙂

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(Talking with Luke) Noah In Hospital Dec 24,2017

In case you need some entertainment 🙂

Luke came to see Noah in the hospital today, and half way through talking with him I started recording the conversation so I could get his idiocy on record. Luke is just like my mother—he does **not** get it. We were arguing when Noah was in the bathroom because Luke was trying to say that Noah could work in a cubicle no problem or that Luke’s family was so healthy it shouldn’t matter that Noah has a bad gene from my side…

Noah eventually comes out of the bathroom and joins the conversation, but I just wanted to get it on record in case Noah ever needs to be reminded to have faith in himself…

One of the hardest things for me was to learn how to get over the fact my mother blew off my immune deficiency for so many years—simply because she didn’t want to deal with it, but I had internalized her ‘it’s not too serious’ attitude myself—even though doctors were trying to warn her when I was a teenager—and frankly my denial almost killed me in 2005….

The one thing we both agreed on though, was that Noah should go to medical school, even though we agree for completely different reasons—Luke thinks Noah should be a doctor because it’s a ‘good profession’, and I think Noah should go to medical school so he can get access to cutting edge technology and/or have friends who will in turn help him one day.

That’s probably what this is going to take—Noah either solving it himself or having a close friend who helps him. Whatever we have is so rare, that it’s going to take that kind of love to help someone do all the work necessary to get the answer—

But he will get the answer, I have complete faith that they will solve it in his lifetime. I have no doubt about that—

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People really do suck sometimes. Especially how they treat people with chronic illnesses.

I just wrote this in response to someone who was complaining that all people do in the medical groups on Facebook is whine about their health problems. (Well, duh, it is a medical support group…)

I personally rarely post anything about my health problems (mostly because there are too many so it would get overwhelming, hence why I write a secret blog to vent), but I also respect that some people do need to let of steam…

This is what I wrote in response:

***

We have a hard enough time dealing with people who don’t understand what we go through, we shouldn’t be wasting time being hard on each other.

If someone people wants to vent and complain online, fine, let them. Sometimes people need to do that to help them get through this, and it’s terrible this author is being so mean about it. I personally don’t vent much about myself—in fact, I rarely post any of my illnesses or hospitalizations on Facebook—but that’s because I’m blessed to have a good support system around me, but not everyone is so lucky. We *all* have days where we feel ‘poor me’, and frankly we’re allowed to feel that way from time to time given the severity of our medical diagnoses .

If someone is feeling ‘poor me’ all of the time, then that person has *depression* which means the person needs *treatment* and not for people to be mean to them ‘you whine all the time’. It’s normal for people to go through periods of depression when struggling with a major illness, we should all see it for what it is and have compassion. There are some people in my life who have shown time and again that they do not have compassion for me or what I’ve been through, so I communicate with them as little as possible. God knows we struggle enough with our illnesses and the frustrations of dealing with the medical system, we don’t need cruel and insensitive comments on top of it. Unfortunately, most people do not know what it’s like until they become very ill themselves…

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Note to self: Ask Dr. Butte at UCLA in January what’s the mechanism that triggers someone to get a fever

I just had a revelation about our case: we need to look into what’s the mechanism that triggers someone to get a fever.

The fact Noah and I don’t get fevers when we should, has *always* been a major symptom of our immune deficiency—I think that mechanism needs to be tested and evaluated.

I had this idea, because I was just reading in my CVID group on Facebook—which is full of people who all have immune deficiency problems—yet they all still get fevers when they get infections. Sometimes even a “Fever of unknown origin.”

The fact that Noah and I don’t get fevers—even with confirmed and well documented problems—is a major clue. Like right now, I have a confirmed by culture Actinomycis and strep infection in my neck—I even have an MRI *showing* a swollen lymph node (which is also very rare—I usually never have anything show in radiology studies, usually surgeons find the problem after they cut me open—),

And yet even with this swollen lymph node, nothing on my neck is visibly swollen, nothing is red—

And of course I have no fever…

(The image of my toe looking totally normal with the 1/2 inch splinter in it says it all, but this fever problem…)

Hidden in there is the answer.

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Doctors dealing with the Unknown: Most people wouldn’t like being stuck in a maze with no end eith er

Comment I just wrote in a medical group on Facebook. Someone complained that they’re long term primary care doctor—who they like a lot—doesn’t seem to ‘get it’ when she talks about her extensive and complicated GI problems…

This was my response:

***

If your primary doctor doesn’t get it by now, he’ll probably never get it. I would just save your GI conversations with your GI doctor. Some doctors really hate it when they have patients they can’t fully understand or fix, so if they’re acting like ‘they don’t get it’, usually it’s just a sign they’re uncomfortable with the unknown or feel helpless because they don’t know what to say or do. It takes a very rare doctor to be able to sit in the unknown and work with you. Don’t take it personally, just focus on the help they do give you 🙂

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