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01 October 2012

But I wasn't DONE with September yet...

I have been waiting all YEAR for September....
 
 
School starting
 
Looking at the school supplies I didn't need to buy anymore for me or the kids
 
The beginning of Fall.
 
 
It was my "cushion month"...didn't have to think about holiday prep.
 
 
BUT NOW IT'S OCTOBER 1?
 
 
OMG!
 
I have to hurry!
 
 
Those who know me and my OCDedness KNOW I've already got the holidays planned, down to making my own Christmas presents to menus, etc.  I even have a calendar on what days I do what for November and December.
 
Surprised?!?
 
 
Didn't think you would be...
 
 
But OCTOBER ALREADY?
 
Now I have to get SERIOUS about holidays!
 
I'm making jammie pants and buying coordinated color shirts for Christmas presents.  Putting my BFF, her husband, Cade and Carter in matching jammies.  Probably me and Hubby as well.  My kids---I have a plan to do their favorite characters from the past...Care Bears, Turtles or Power Rangers and Kiereney is still up for grabs. 
 
 I'm making presents this year to give myself a gift...
 
peace of mind!
 
I had to buy a new sewing machine a couple of months ago to finish my purse (and when I get another phone pictures will be forthcoming) and I felt guilty for spending $200 on it so to justify it to myself, I'm using it to make Christmas presents.
 
Not many people understand my mind.
 
It throws me for a loop at times...
 
In other news, Kiereney is in Chicago interviewing for a nanny job and will be back tonight.  They paid for her bus ticket (MegaBus--double decked with WiFi---she was stoked!)
 
Kelli definitely has MS and tomorrow is having a lumbar puncture to get spinal fluid to analyze which of the 4 types of MS she has.
 
I have no experience with MS so if you know of anyone and can relate info to me, that would be great!
 
I DO know that you are NOT supposed to put someone on 200 mg of Prednisone to combat an MS flare and NOT WEAN THEM OFF OF IT!  Kelli went through hell and back last weekend, spent the weekend in bed and I had a fit!  She went back to the Dr. today(internist) with her boyfriend and Dr. said that is how they do it.  You can have a STROKE from not weaning off of Prednisone.  He finally upped her Oxycodone to 7.5 mg as the 5 mg wasn't touching her pain.  She met her Neurologist last week and she and her boyfriend could not get question 1 answered.  We voted him off the island and she's trying to get into his associate, Dr. Thomas, who her friend goes to but Dr. Thomas has a waiting list...wonder why?
 
So please think good thoughts or pray or chant or whatever that we can get Kelli into Dr. Thomas.  He comes with wonderful references, he will answer questions, etc. and that's what she needs.  We didn't know anything about MS until she was diagnosed so we need MS 101 now.  I'm leery of what I read online but if you know of a reliable website for MS, please pass that on as well.
 
Also Neurologist told her she'd be in a wheelchair in 10 years....she turns 35 October 19....you don't say stuff like that to a newly diagnosed person.
 
She has a phenomenal boyfriend who is in this with her for the long haul and we're lucky she does.  He is a great guy and Army enlisted to boot!
 
Roger is having another congestive heart failure flare and I have a call into his cardiologist.  I'm hacked off at this doctor as well because he blew off a 4.1 cm aortic aneurysm last week with a "we'll watch it"....it was a fluke it turned up on the chest CT his pulmonologist did a week ago.  The echocardiogram didn't even show it.  I'm not comfortable living with a ticking time bomb...
 
I AM enjoying Fall...already had hot dogs and Smores over the open fire.  The temps are great.  I just wish the grass would stop growing as I'm having to mow once a week and my fibro flare just calms down a bit when it's time to mow again.
 
I'm still off FB and loving the extra time.  I am knitting and crocheting scarves and blankets for the homeless and enjoying listening to TV or music.
 
And I'm still believin' and hope you are as well.
 
Love to all,
 
Ness

6 comments:

Laura said...

Hi Ness, so sorry about Kelly's MS dx. I never get weaned when I have to have several days of IV steroids... and I've had them many, many times... sometimes I end up being pretty cranky for a day or so after, and definitely weaker for a while, but they really make a difference. I know some folks who refuse them...but exacerbations last much longer without them.

Laura said...

I re-read your post... oral steroids??? usually they are administered through an iv and at much higher doses for 3-5 days. And NO one knows how rapidly MS will progress...not everyone ends up needing a wheelchair it is so very variable. There are many new medications that (depending on the "form" of ms and the individual) can slow down the progression...unless it is a highly progressive form. I pray that this is not the case here. I am doing very well over all on Gilenya...you can write to me if you have questions... I will try to answer as a non-physician but person living with ms as best I can.

WinnyNinny PooPoo said...

Ness: So sorry to hear about Kelly. that was a crappy doctor that said all that negative crap.
grew up near a MS hotspot where there seemed to be quite a few people with MS. It can turn bad and get better really quick at least for the people I knew who had it and there really weren't many treatments back then. But if there are 4 types it might be whatever type was around my area. Knocking on wood she gets into dr. Thomas.

Scary about the aneurysm, however with my BIL he is where they have to measure the risk of a procedure vs. the risk of further health risk. Make that doctor explain why no urgency. I did with my Mom.

My Mom has an aortic aneurysm, and her vascular doctor explained he grades 3 levels of aneurysm, level 1 is watch and wait and he said anything under 5.1 CM which seems mighty big is level 1 for him if I remember right. Level 2 is bigger and he said you MIGHT do surgery based on the health of the patient, and Level 3 is need surgery regardless. Based on the rate of growth and my mothers health and age, he indicated she will probably pass away from other causes before the aneurysm grows big enough to worry about

Steph said...

Ness,

I'm so sorry about Kelli's MS diagnosis. Here is a good website: http://www.nationalmssociety.org/index.aspx. Mom says that is where they send patients to who are new diagnosed. You have do ween off of steroids. I would be looking for a new doctor ASAP!!!You are suppose to hit it with a high dose and then step down.

Praying that KJ gets the Nanny job. She needs a break and so do all of of you!!

Love ya!!
Steph

Kelly said...

Holy moly, Ness, I'm sorry to hear about Kelli's MS. I'm sorry I don't have any reliable sources for info, but I will keep her in my prayers. Also praying for KJ...how exciting for her! And you, missy, take it easy! The lawn can wait 2 weeks between mows. I love the scarves...do you make them for a cetain organization to hand out?

Alice said...

Sending love and light to KElli with her dx. I will talk to my mom. My grandfather (well technically step-granddad) had MS. He had a long, wonderful life. It's all about educating yourself. I see if she has any info that might be helpful.

Glad it's fall too. Weather is FINALLY starting to cool just a little here in GA. So glad you're blogging again. Love you, friend!