My leukemia's back.

[ronott1]

Morning....31 here but the sun is out!!!!....Kacy is coming home today for dinner..yay!!...between pain and breathing problems haven't been sleeping well at all. My lungs are getting so tight and full of sticky mucus...I'm going to have to push the VA about adding an allergist I don't want to put up with another winter like last.
I hope things are improving for Rachel...being she hasn't mentioned permanent lung damage I got to hope they can come up with a solution...I pray they do...
...unfortunately to see an allergist I will have to drive all the way to Milwaukee...6 hour drive..
....I have to drive a100 miles to iron mountain Monday morning to the VA for a meeting so they can determine if I can go from 90 percent disability to 100..
...it's a big deal for me...My MRIs and kidney function test etc have all gotten much worse over the past several years...the only reason I was stuck at 90 was I continued to work...just got too hard there toward the end....Phil

P.S. thanks for letting me ramble some days...

That is far!

Phil,

.
I have been grumbling because I hate spending a tank a gas each week to drive to my allergist, so I have been putting off the second testing and the six months of in office antigen therapy.
I will stop moaning now.

600 miles is way too far.

I will save the universe my moaning because I believe you are more moan deserving.

Moan away. We sympathize.

The Allergist that my DD saw would make up the formula and send it to the school nurse for kids in college. The kids would go into the nurses office and get the shot when scheduled. You should be able to get the Allergest to send the formula to your local DR. and not have to drive in for the shots. My DD started out with two shots a week worked up to one a month.

 

[3goodeggs]

I will see if that is something they will consider, but if there isn't an insurance code for that...

It would be billing from each office...

Insurance billing is like language from a different planet or something.

(I always wanted to use that emote)
That's why a doctor needs twelve office staff members to handle insurance. and that is why everything costs so much ... and look! I am grumbling! and I promised my grumbling credits to Phil.

 

[Blooie]

<plop> Thanks for the lasagna - I needed that. Wasn't on much last night. By the time Kendra left for the day I was about over the whole day. Don't mind doing the physical therapy.....don't mind doing any of the stuff we do for and with Kendra.....but some days the back just isn't into it.

Had a long talk with the kids yesterday evening. I ain't getting any younger and Kendra isn't getting any smaller. We discussed the possibility of them finding alternative day care for her. In an area as rural as we are finding people qualified to do the catheterizations, deal with the seizures, and doing the therapies isn't easy - folks like that don't grow on trees. We're going to discuss it with Children's Resource Center and see if they have any ideas. But then last night when I was laying in bed staring at the ceiling and waiting for sleep that just doesn't seem to come, I started bawling. The thought of not having her here everyday, of wondering if the person they might find will be able to do things as well as I do (bragging, but truth), will be willing to put a dishtowel on her head and play boo-monster....so many little things, well it was tough to think about. When Kendra learns something new it's a huge deal here. I know when I can push her a little farther and when it's time to back off and/or redirect. I know what she responds to even though she can't verbalize it. Even her therapists comment all the time on the progress she's made being with me and Grampa. And then it hit me. As tired as I get, and as sore I sometimes get, I'm jealous! I don't want to share her with anyone else. I've put myself into an untenable situation - too old and creaky to do the things that need doing and too selfish to see her make progress with someone else. <sigh> So maybe I'll just keep plugging here as long as I can, and as long as I'm not putting her at risk with my own limitations.

Ah, don't pay any attention to me. Just a little pity party and the lasagna should help. And Jenny just pulled up with Kendra so I'd better scoot and get her settled in. I think I just need a Kendra hug!

 

[LittleLakePhil]

I don't need to grumble anymore...I'm entering a no grumble zone anyway....
...the reason everything is so far away is that I kinda live in a unique location....The Mackinac Bridge separates the Upper Peninsula from lower Michigan...The whole population of the U.P. Is less than that of a mid sized city....the closest city of any size is Green bay Wisconsin..And it's a three hour drive. For care after my transplant I had to drive every Monday to U of M in Ann Arbor...550 miles...But I chose to live here for a reason...the remoteness is one of them...(fishing is another and it was a good place to raise kids)
This officially isn't a grumble...just a geography thingy...I now have enter the no grumble zone......Phil

 

[LittleLakePhil]

Blooie...it's just the things we do...you need chocolate....or maybe some chips and dip.....

 

[3goodeggs]

Hey Blooie, you do not need a qualified replacement, you need a helper. You need someone to help you lift. not catheterize, not play boo monster. you need someone who can help you do the physical labor.
And that will be so much easier to find than a qualified replacement.

 

[LittleLakePhil]

I agree ....

 

[Blooie]

Blooie...it's just the things we do...you need chocolate....or maybe some chips and dip.....

Noooooo not chocolate!! Please don't punish me with chocolate. The chips and dip I'll take, though!

 

[Blooie]

Hey Blooie, you do not need a qualified replacement, you need a helper. You need someone to help you lift. not catheterize, not play boo monster. you need someone who can help you do the physical labor.
And that will be so much easier to find than a qualified replacement.

That's what I have Ken for!

He does most of the lifting and carrying when he's home. Just that lately he's out of town almost more than he's home. He's been home 11 days this month. So we muddle.

 

[donrae]

Hey Blooie, you do not need a qualified replacement, you need a helper. You need someone to help you lift. not catheterize, not play boo monster. you need someone who can help you do the physical labor.
And that will be so much easier to find than a qualified replacement.

Exactly my thoughts! This would be the perfect opportunity for a young woman in your area who is interested in going into healthcare/childhood development/special needs kiddos, etc. Someone just out of high school, who can drive themselves, loves kids and is young and strong enough for the physical part. You can teach the cathing to an appropriate person. A helper can sure help with PT also. And, she could be doing things like cooking/prepping dinner, doing laundry, things like that while you're spending time with Kendra.

I think I may have just talked myself into getting a helper

.


Dr appt yesterday. All the labs weren't back yet, but the CBC continues to look good. My platelets have leveled off in the 70s. That's very live-able, they'd just like to see them above 100. But 50 is the cut off for spontaneous bleeding, so they say I can survive a car accident, etc at this level. Comforting, right?

They're waiting for the liver tests, etc before changing any meds. I really want to start tapering off the prednisone. I'm getting those chipmunk cheeks and I hate that. Plus, someone broke in and ate way too many of the cookies I baked the other day.....

. But, between that and the increase in the anti-rejection meds, my breathing is doing better. Way less coughing, less mucous. Still SOB with exertion and I can't do a lot of the things I want, but I can manage most of what I need. And get boys to do the rest

. The specialists are down next week, so we'll see what they say. Oh, and still no appointment in sight with the local pulmonologist......I'm just letting that go for now. I'm getting treated and it's helping, so don't stress over that appointment. I believe I may need to see one down the road, but that will come.


Went to the Grange yesterday and came home with 5 EE and 5 Barred Rock chicks

. Honey gently reminded me that's about $200 in chickens recently.....okay. And did I mention I'm still buying eggs?

So, going to make NFCs sausage, then into Blooie's stuffing, then cook a turkey in bacon tonight. Should be fine eating!