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?

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.

We’re again coming to the point where we’re grasping at straws.  Trying to fix at least part of  something because, to (poorly) paraphrase what my doctor said yesterday, “There isn’t anything I can tell you to do to help you that you’re not already doing.”  Not that I could afford anything else anyway.

To put it mildly, I’m freaking out.  My family can’t afford to help me any more than they already have this month.  I’m desperately trying to get my nerve block next week, but was told they may not be able to give me a time.  All patients are being moved back to Oak Park because the cryoprobe in Chicago is broken.  My lung pain is back to the point where it gets so intense that it makes me cry.
After seeing how much pain I’m in my mom told me to try and get in. But it’s like $1000 just for MY part.  I don’t know how we’re going to pay for it.  And I don’t know how I’m going to get there.  I really don’t know what I’m going to do.

Oh yeah, and my insurance runs out on the 10th, so my doctor wanted to schedule me for the 9th to see if the medications changes work.  That’s another $50.  And I have to try and get as many prescriptions filled before then.

I hate being stuck in this position.  If there is any way you can help, please, please do.  And if you can’t donate, please pass on the word.  I appreciate anything you can do.

I can’t begin to tell you what a blow it is to hear that things may not get any better when I’m barely holding on.

• found out my “savings” account was overdrawn by a sizable amount as a result of an auto withdrawl (by my bank, which means there is nothing I can do about it)
• had a pen leak on my quilt
• managed to stab myself in the thumb with the serrated blade of a tape gun
• bled all over my work
• missed DLD ticket sales
• got my shoulders worked on only to have my migraine come back worse
• speaking of that, still dealing with weird/wrong tastes in my mouth… not sure if that’s a migraine thing or new med thing
• got pulled over driving home because I had forgotten about my (lost and thus not updated) car registration
• Oh, and why am not sleeping? Hiccups. THEY. WILL. NOT. END.

Though to be fair the guy was really nice and suggested that I go to the secretary of state and they could take care of it without needing my lost paperwork.  Then I should take that to court and he said judges are usually pretty nice about it.  Here’s hoping.  I have to look up where an office is tomorrow.  Thankfully I had my right insurance card.  And on a funny note I did realize that the police were out because it’s St. Patrick’s Day.  If they quotas the guy was probably grateful to deal the a pleasant girl who wasn’t drunk. He was like “I’m sure you’re going to take care of this so I won’t hold your license as bond.”  But oh man, registration is like $99, right?  Is there a late fee on that? Oh, $8/month. :/ Not so bad. I wish I would have just realized that it was the same as the drivers license place!  I would have gotten it done when I first realized I lost it.   People, do not let me forget this!

At least I didn’t lose my Lunesta, I may need to switch pill cases again. I love this one but it doesn’t latch closed so things on the end that open first have way of coming out.  I ended up finding it in the pocket of my purse. They’re a few dollars each.

Ooh. I’ve gone on long enough the hiccups have FINALLY gone away, and the migraine is easing up a little. A little more and I might be able to finally sleep.  At least I’m not like a lot of poor schumcks spending the night in the drunk tank!  I’ve got my kitty and heating pad (which may have to be repaired with duct tape for now) and my nice soft bed.  Hopefully I’ll actually be able to sleep now. (Forgive any spelling/grammar, etc. errors – exhausted + sleep meds + not wearing glasses + migraine = well, a deck stacked against me in terms of writing!)

Much love to:

• Eilene
• Tim
• Rob
• Patty
• Dawn
• Missa