Daily Ooo's: Tuesday July 31

[faerywings]

Really? Does it have to be the last day of July *already*??I am still waiting for the relaxing days of summer to get here.


It has not been a relaxing summer at all. Think it will ever get to be one? *snorts*


I just blabbered my day to a friend in email, so forgive me as I copy and paste it here.


So the drs appt went "good." I was easy-- she feels that I have an active case of Bartonella, which she recently went to a conference on and research is pointing to the fact that is never leaves the body either. My RA factor is higher but my lupus ans ANA factors are down. The good news take-away is that I am handling symptoms so she isn't adding any different meds. The med for Bart is harsh and she felt the side effects would outweigh the benefit. Whew!!

Gary is going back on a PICC line/IV abx. Took a bit of convincing (yelling!) but we are going to do it. We'll be paying out of pocket for much of it, but it has to be done. Dr F had 23 days of abx and IV supplies donated, a friend has offered to do weekly dressing changes. Dr F waived her fee for us this month (over $600!) so we can put that towards his out of pocket meds costs and weekly blood work. We have to get him stabilized.

She also talked to me about how hard it is for men especially to be chronically ill, and how emasculating it is. I know it rationally but I think I forget about it in the day to day. I have to try and be more conscious of that.


So that was the dr's visit.....
Then we were off to DMV- which was not as bad as it looked. We were there for about an hour but that had it organized in stages so we kept moving along.


Tomorrow I have to bring him to the hospital to get the PICC inserted and then he starts infusing. Please keep your fingers and toes crossed that the rocephin works. It did the last time he was on it (2007) but the insurance co wouldn't pay for more than 2 months. if we go through no insurance, we might have a longer time for him to be on it.
And good thoughts for his blood work would be appreciated too. He brought the script for the "prostate cancer protein detector test" too so maybe we'll have more info on that soon.


Its too crazy here!!!!!!!!!!!!!!!


Tip on Tuesday:
just keep swimming.....

 

[faerywings]

Hee hee, I looove Finding Nemo

I wanted to add to my blabbering up there ^ that I am so incredibly grateful and thankful for the people who are helping us out with this- the patient who donated the unused meds, our dr for waiving her fee, my friend who is doing the dressing changes..... all of the support from family and friends and for all of you who listen to me ramble and rant.


I wish I could give back, and who knows maybe at some point I'll be in a better place financially to do it. What I do want to do and I need to start researching more about is to donate my organs for Lyme research. I am an organ donor but my organs and tissues wouldn't be acceptable. I feel very strongly about having my body and brain donated but I don't have a will (I know, bad!). At some point soon, I really need to dig into that. Even if I can find a free "make a Will" program online, I will have better chance of getting my wishes respected, God forbid anything happens to me soon.



If any if you have any experience with that, can you let me know the best way to go about that?


Much thanks!

 

[whatnext]

well. that's a lot of stuff happening, Chris! is the Dr. you go to a rheumatologist? what kind of doctor handles the sorts of problems that you guys are facing? you know me. i take issue with this:

how hard it is for men especially to be chronically ill, and how emasculating it is.

this implies that it's somehow easier for US to be sick. i don't buy it. and it becomes MORE difficult for us when we have a guy who's ill, too. most women basically suck it up and "keep swimming." i just hope that somehow this gets easier for you, my dear. you continue to amaze me every day.

no AC today. they're promising the LOW 80s. i hope that's so. i'm starting to look forward to September. but that means that a Northeastern Winter is not far in the future, and that doesn't make me happy, either!!:mmph: little by little my garden is disappearing. always a sad time for perennial-growers. now it's lots of chopping down and clearing out and back to the mostly-green canvas out back. so. after this i'll probably go outside and walk roundandround on my patio for a bit, then put on my gardening gloves and cut down some more stuff. i've had a cute little hummingbird hanging around my giant hibiscus flowers over the last week. those little guys always amaze me.

Trudy, the Grands are with you today?? YAY!!! have a ball!

Nana, that "cooking in advance" always sounds so smart to me. i don't know why i never get going with something like that. it must really make dinnertime a lot easier to face. i'm pretty tired of cookng and thinking about what to cook. i imagine you are, too, and you have the responsibility of doing it for those little cuties!

OK. off to walk and chop. have a good one.

phylis

 

[whatnext]

Chris, maybe the Lyme Disease associations around the country would have some guidance for you on that subject?

 

[faerywings]

Personals from yesterday since I never made it back....

Phyllis- I actually didn't have much time to read in any of the waiting areas! That is a bummer too b/c I am re-reading Discovery of Witches before the second in the series came in on my library hold list. But guess what came in yesterday? Yup-- Book two.... as well as another one I had placed on Hold. Why do they all come in at once??
Thank you for mentioning your friend who is having chemo. That always helps me to get a better perspective on my own life.


Donna- good luck with the organizing and tossing!!


Trudy!!!!!!!!!!!! Are you having a wonderful time with the g-kids??????????????? Lots of hugs and laughing!!!
Bet your gallery is going to explode with goodness!!!


Nana- that is a great idea. I wish I could be organized like that with cooking and dinners.And how did the cookies come out? Bet they are messy-good!


J- gentle hugs to you. I hope that you are feeling better today and that the dr can help you with whatever is going on. And what is it with men??? It took me all month to get gary to call for my car to get into the shop. yes, I could have called myself but I know that if I get on the phone with the "duuuuhh I have n idea whats wrong but there is this noise...." I'll get scammed, ya know?
Anyway- try to stay cool!


Hi Kristy! This summer is going tooooo fast!!! Are your kids ready and/or excited about school? Mine are dreading it, but I guess that is what happens when you are teenagers..


hugs and love to all!

 

[faerywings]

P- our dr is a Rheum. The kids' dr is a GP. But they are both LLMDs (Lyme Literate MD) which means that they specialize in Lyme and other Tick Borne Diseases like Bartonella and Babesia and so on.They are the other side of Infectious Disease drs who feel that Lyme is easily cured in 4 weeks (some say in 2 weeks!) and they there is no such thing as chronic lyme. This is why it is so hard (impossible!!) to get insurance to cover this b/c of course the ins co's don't want to pay for long-term treatment. Which pisses me off royally because perhaps if Gary had been able to stay on IV abx for longer than 2 months-- maybe none of this long term treatment and full disability would have happened. Imgaine how different life would be.


Sorry!! it makes me crazy!!!


I know what you are saying and ITA, but she was coming at it from the cultural standpoint of the man being the provider, which sadly still is the norm. Its hard fro him to have to come to me and ask for a few $$ cash so he can get gas for his car or buy a coffee. I keep $40 in an envelope that he can take whatever he needs from (I use the envelope method of budgeting cash for the month) but its still hard for him especially since he really was the bread-winner and I was the SAHM for so many yeras.


Anyway, I digress.....


Excellent idea to look at the Lyme Ass'ns. There are a few that are very research oriented and that would be a great place to start.


You rock!

 

[hondachicc]

Went to bed with a headache last night...woke up with it this morning

I think my DD helped with this....more "life sucking out of me" news from her...won't go into details now...but she is going to be the death of me!!!!


Anyway...nothing else from here....another boring day for me..I need to get my glasses adjusted...both pair...hurting my nose....so I will venture out to take care of that this morning...


Chris....wow..sweetie..you had a day yesterday!!!!!!!!!!! (((((HUGS))))) I have said it so many times...I wish I could do something!! and yes, men do not handle being sick like we do...well they don't handle anything as well as we do....


Phylis....Yes...I hate fixing dinner every night.....I hadn't cooked like this in a long long time....YEARS...so I thought I might try it again...we will see if I keep it up...I hope your weather holds down to those low 80's..wish ours would!!!! and for the garden...I like color year round so we put those "burning bush shrubs" across the front of my house....they are such a vibrant red in the winter!!


I better go....I got one "little" here driving me insane!!! "I WANT MY BREAKFAST NANA!!!!!!!!!!!!!!!!!!!!!!!" UUUUUUUUUUUUUUUUUUUUGGGHHH!!

 

[Kiliki]

my kids are super excited for school...specially Helena!!! she starts kindergarten!!! she is so excited to jump on the bus with her sisters!! i am SO glad they all get to ride the same bus!! the schools are all right next to each other so the bus carries kids from elementary school all the way up to high school...so that is nice for her that she gets that

15 more days!!!! YAY!!! I plan to scrap this week too...GASP...haha haven't done that in a while..a friend of mine on another board posted a little survey to ask the kids what their favorite stuff is so i think im gonna take that survey and turn it into a scrap page for each child