1) Two women wearing sequins should be careful when hugging because the sequins kinda lock together.
2) You can put any in beverage in a fancy glass and everyone will say, “Ooooh! What are you drinking
3) People have seen me so few times since I started working at Channel Awesome that they comment on the loss of medication weight every time I see them
4) I still have a presence. I wanted to sit and accidentally created a little nightclub corner where we all sat and talked with our drinks. Everyone wanted to join in on my sparkling cranberry juice too.
5) I do not see my girls nearly enough
6) At least my mystery illness doesn’t require exploratory surgery

It sounds like one friend is having the same issues as another friend but her doctors have gone ahead and done exploratory surgery partially to fix one thing and the second thing they did was preventative. Based on the symptoms and her medical history I have to say I’m totally stumped too. That doesn’t happen often.

As for my new symptom, the other person with a symptom did go in to the doctor. I think my mom pushed for it based one how upset I was because it was something that could help me and nothing was going to be done about it. In the end, nothing new. I’m not surprised based on this doctor, who despite obvious symptoms, always likes to tell the patient nothing is wrong. So the person is switching body wash and seeing if it goes away. In the meantime I have to figure out if any of the dermatologists recommended take my insurance. I’m leaning toward Robin’s because that doctor will have experience in having a patient with uncommon chronic illnesses.

I’ve been working out lately. My bronchiolitis was really bad one of the days so I need to remember to have my inhaler with me. It’s possible that’s the illness flaring that’s causing the random fever. I haven’t worked out yet today but will before I go to bed. I want to get work out of the way before do that though.

My WordPress theme updated and I have to redo a lot of stuff. And despite what the preview on the backend looks like isn’t displaying properly on the front end, so I have to figure that out. What a pain!

In the meantime my body is trying to keep this fever at bay and partially succeeding. It’s still lowgrade but slightly higher than my “normal fever”.

I hate going through all of this again.

Then discovering you might know what it is after all, something that made the short list before but you’d still have to have a rare (never before seen) form of… and only figured out because you were trying to help someone else.

I have to call my gp and neuro in the morning and collect all my last test results. And then I have to call Dr. Cowden (pulmononlogist) and ask to be seen ASAP.

I don’t know if I want to be right or wrong.

Wrong means we still don’t know.
Right means we FINALLY do. It’s not that right is good for me, it’s not. In fact on the whole it’s worse for me.
Wrong means two people still have mystery problems to be determined.
Right means a dx and plan of action/treatment.

But I was wrong.

I’ve never had to do this alone before.

This sucks.

That was short lived.

The woman that I spoke with INSISTED I must come in and see Dr. Amin before they would allow me to schedule my nerve block. Why? To waste time and money I suppose. Previously the doctor told me I did NOT need to come in unless things changed. I, of course, let the woman in scheduling know this (and it should be clear from my chart that I have been seen for ONLY nerve blocks in the last couple years, no office visits) so what does she do? Put me on hold until the phone system finally hung up on me. So I called back only to go through the same conversation and be put on hold for another 15 minutes. When my call was finally picked up again it was clear she hadn’t checked on it at all. I MUST see the doctor. When can they see me? Not until 1pm on the 22nd. Only AFTER that will I be allowed to schedule my nerve block.

I got off the phone and cried to both my mommy and Julien. Both felt bad they can’t help and gave the same advice, “be strong.” I’ve no other choice. This is all so frustrating I can’t even express. Cryoprobes are usually scheduled a few weeks out, and to have to add another week of the kind of pain I’ve been in on to that?

Thank you all so much for your support! Honestly, I couldn’t be more grateful. There are not words to describe how happy I am to know this is happening. I literally cried. Ah! And now I’m tearing up again.

Again, thank you all so much. I’ll keep you all updated on the situation. I’m also getting back to telling my story. It’s so hard to relive some of it, if only in words.

Much love.

Edit: Super special thanks to @Dgcakes on Twitter who is a wonderful and amazing person

Anyway, we’ll cover all that another time. Today, an excerpt from my grandmother’s diary. My hero and inspiration.

11/7/89  This morning during my time after breakfast with tea and “devotions” (Yearbook of Prayer and “These Days” booklet) the Nov. 7 comments in the latter are just what I needed. It speaks of ” the simpering self-depreciation that tries to pass as humility in the attempt to “puff up” by exaggerated deflation, to be famous for one’s worthlessness.”

“What have you that you did not receive?” I Cor 4:6-7

“Neither boasting nor backing away, may we use our gifts in your service, Lord Jesus, knowing that each one is cherished. Amen”

I know I’ve heard “As you receive freely give” – I know have I heard that in my 64 years – yet I never really heard it until today.

This really spoke to me, as many of her entries do. I can tell you, I never would have made it this far without her.

I nutoo, Grandma.