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PJ Day...


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#1 KimAgain

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Posted 15 May 2013 - 01:01 PM

SO over extended myself yesterday, here it is, almost 2pm, and I'm still in my jammies. I tell myself that I pushed the physical envelope for a good, good reason yesterday--and I did. But, still, I also treat myself to a little emotional bashing because my mind says I should be able to get past it and get moving again today (and I must, no choice, have to pick up meds for my pup today), but I am just too, too tired.

SO...

I am going to forgive myself and have a little jammie party with my Parky friends here online. I made tea and now I'm going to do a little over sharing...

Two hours before the paramedics were called for my friend Donna, I asked what she would like me to cook for her--what was she in the mood for? She looked at her husband and boys and said, "you know, don't you?"

They did. Donna wanted a chicken pot pie.

I had made one a year earlier and, since my husband and I could not eat the whole thing, I shared it with Donna to save her a day of kitchen duties. Her Mother was undergoing radiation treatment at the time, for the lung cancer that ultimately took her life, and Donna told me--two hours before the paramedics came for Donna herself--that it was the best pot pie she'd ever eaten and that she and her mother had shared it and loved it. I promised Donna I would make her one that very day, but she suffered a pulmonary embolism, lapsed into a coma, and died, before I ever had a chance to make god on my promise.

That was back in March and, yesterday, I kept the promise in the only way left open to me--I cooked for her three guys. I won't bore you with any more details, but suffice to say, I also wound up cooking dinner for another friend yesterday and, as a consequence, I am exhausted and having a bit of a PJ party today.

Anyone else having/had/contemplating/care to share a PJ Day story with me?

<sip sip>
Kim

#2 Beau's Mom

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Posted 15 May 2013 - 01:34 PM

Sorry, Kim, I had to be up at 6 AM and out the door for a doctor appointment. Lunch will be ready soon and then I have 1 1/2 hour PT appointment. Maybe (most likely) another day. :-)
Dianne

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#3 Rogerstar1

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Posted 15 May 2013 - 04:30 PM

Not much of interest to share...but I did Garden for a few hours...sitting down for the most part. I love pot pies though usually have to settle for Banquet's 79 cent variety that I actually prefer to the Marie Calander $4 plus frozen food isle offering. Best to you...I had not realized you were post DBS, Kim.

#4 MarciaJ

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Posted 15 May 2013 - 08:04 PM

Sorry you lost a friend, Kim. I'll bring a box of vanilla wafers to your tea. They aren't really a cookie but I like them. I just can't remember a story to tell. My mind is blank. But I'm good at listening. Especially if my mouth is full of cookies.
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#5 KimAgain

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Posted 15 May 2013 - 11:08 PM

Sorry you lost a friend, Kim. I'll bring a box of vanilla wafers to your tea. They aren't really a cookie but I like them. I just can't remember a story to tell. My mind is blank. But I'm good at listening. Especially if my mouth is full of cookies.


Cookies of any kind can tend to make me a good listener, too, Marcia... and, how lovely of you to offer to bring some with you! ;-)

I did (finally) get showered, dressed and ran my errands this afternoon. This evening, a friend came by--we had tea and a nice visit--thus, the jammie party continued.

Sorry, Kim, I had to be up at 6 AM and out the door for a doctor appointment. Lunch will be ready soon and then I have 1 1/2 hour PT appointment. Maybe (most likely) another day. :smile:



Not much of interest to share...


Lovely of you all to at least consider sharing a story with me. I guess, in the final analysis, I was hoping to maybe start a "neutral" sort of thread--just a little place to sit and chat that is neither particularly perky or down beat--a place to curl up in my PJ's and visit.

Thank you all for stopping by... I so enjoyed our little PJ soiree! And now, I'm going to break the international no-cookies-in-bed law <nibble nibble>, brush my teeth, then have a whack at getting some sleep.

Be well, be happy,
Kim

#6 dgray001

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Posted 16 May 2013 - 01:33 PM

I can totally relate to this. Most days just going to work and back is all I can muster up the energy for. Anything extra puts a strain on me physically and then usually emotionally. If I overdo it, I’m very tired and often just don’t feel well the next day. How I’d love to have a PJ day on those days! I am envious you got the much needed downtime. Hope you enjoyed your PJ day and feel much refreshed today.

I will share a story, even though I missed the actual party. Last weekend I had my first horse show of the season. I haven’t actively showed in several years, for various reasons, but occasionally went and watched, where I met the BF. I became interested in it again and tried showing his, but we didn’t click. I went around the ring a few times, but never really figured out the horse and no ribbon. When I realized my health is declining, I decided I wanted my own show horse again and we began the search. Found the perfect one, already a world champion and well trained….we bought him, and I’ve been riding on my “good” days. Turns out, there is no perfect horse, just as there is no perfect person LOL. I was stressing about our first show, hoping to not fall off, hoping to not make this WC horse look bad, worried about how he would act, who would be there to see me potentially crash & burn, etc. It was exhausting, getting him ready, getting me ready, traveling to the show – then it rained, not just sprinkles, but poured rain. I showed. In the rain, in the swampy ring, with 8 competitors and took 3rd. It may have not been the best performance, but we did good and no mishaps. It was an all day adventure and the next day I was exhausted, but it was Mother’s Day. I felt ill all day because I had pushed myself so hard the day before, but I managed to take my Mom out to eat and spend a little time with her. She wouldn’t have appreciated a PJ day, but it would have suited me just fine :-)

#7 Luthersfaith

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Posted 16 May 2013 - 07:52 PM

Not much of interest to share...but I did Garden for a few hours...sitting down for the most part. I love pot pies though usually have to settle for Banquet's 79 cent variety that I actually prefer to the Marie Calander $4 plus frozen food isle offering. Best to you...I had not realized you were post DBS, Kim.

Roger, i absolutely love pot pies as well. I knew we had something in common. Boy does that sound good right now!

"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)

#8 KimAgain

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Posted 16 May 2013 - 09:30 PM

Stress--whatever the cause, be it the "good" kind, or the "bad" kind--can be one of the biggest challenges a PD patient can deal with on an ongoing basis, I believe. It can cause exhaustion and be caused by exhaustion. And, when stressed to the limit, the PWP can wind up slipping <plop> right into the Blue Hole (my term for everything from a blue day to outright depression). But, what to do? How do we best cope with stress? All I can think is:

Be kind to ourselves!

However, this is so much easier said than done sometimes, I think.

I can trace my little slip into the Blue Hole back to, first, my little dog Hannah being so sick and, second, the hyper-stressful day I had on Tuesday. It took the wind right out of my sails and I have been trying to manage my feelings/symptoms ever since.

dgray, thank you so much for sharing your story... I could feel it! The cascading effect that stressing over something can have. The exhaustion--both physical and emotional--it can cause. Do you think this happens more as time goes by? Is it something that only came on subsequent to PD, or has it always been a part of your makeup but has just gotten worse? Not very well phrased questions, perhaps, but if you can decipher them, I'd be most interested in seeing if your answers comport with my own experiences with this issue.

I'm glad you managed to get out with your Mother--so nice to make memories with one's we love.

#9 KimAgain

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Posted 16 May 2013 - 09:31 PM

Roger, i absolutely love pot pies as well. I knew we had something in common. Boy does that sound good right now!


Comfort food - nothing better!

#10 she-ra

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Posted 17 May 2013 - 12:18 PM

I had a PJ day on Tuesday, called in sick. Kim, we should coordinate since we are both in Georgia! Can't put my finger on why tho'. I slept til 11:30 and only woke up then because the cats couldn't stand it anymore. A lost day for sure.

Pot pie sounds wonderful!!
Sheila ^_^

#11 Luthersfaith

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Posted 17 May 2013 - 02:58 PM


I want a birthday suit day.
"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)

#12 KimAgain

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Posted 19 May 2013 - 03:49 AM

I had a PJ day on Tuesday, called in sick. Kim, we should coordinate since we are both in Georgia! Can't put my finger on why tho'. I slept til 11:30 and only woke up then because the cats couldn't stand it anymore. A lost day for sure.

Pot pie sounds wonderful!!


I am in North GA--You??

#13 KimAgain

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Posted 19 May 2013 - 03:51 AM

I want a birthday suit day.


That will be a solitary occupation I tend to think... with no hot tea. :???:

#14 Luthersfaith

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Posted 19 May 2013 - 06:00 AM

That will be a solitary occupation I tend to think... with no hot tea. :???:


Agreed... at my age our bodies are not much to boast about... Which opens the door for me to rip the theory of evolution. I believe in devolution. From puberty on, our bodies decline in health and beauty.
"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)

#15 MarciaJ

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Posted 19 May 2013 - 10:12 AM

Agreed... at my age our bodies are not much to boast about... Which opens the door for me to rip the theory of evolution. I believe in devolution. From puberty on, our bodies decline in health and beauty.


Beauty is in the eye of the beholder. Didn't someone say that. My DH says I'm beautiful. I just have to find new places to hide his eye glasses.
<3.<3.<3.

#16 Island Woman

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Posted 19 May 2013 - 11:14 AM

PJ Day for me....4 hrs. gardening yesterday made me declare PJ Day!

Patricia

#17 Optomist

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Posted 19 May 2013 - 11:13 PM

I hate to break the party but once again asking for suggestion as my wife has had many a nights with worst pain and COMPLETE freezing. Dr Okum offcourse replied professionally to this too but I ask for related symptons or experience if any and what was done.

She keep having really bad nights every now 3-4 days. Some nights are actually pretty good (how and why) and she is mobile after some slowness but on some nights she is COMPLETELY IMMOBILE and freezes (now immobile and freezing are same thing?) , to a point where she cannot move her hands or head or leg and need assist with a very very small movement. Complains of back pain at times too. Got her X ray for back but nothing too bad except some degenerative changes. She is 48 now. Questions are:

1- Is this simply Parkinson related? Why are meds not working for almost 4-5 hrs despite being taken every 2 hrs. Rescue dosage, regular dosage, Lyrica, and all. (6 tablets of 50/200 CR , 5 -6 tablets of 25/100 regular, 3 requip 4mg , 2 amantadine, 2 Lyrica and 6-8 advil every day with CoQ10, Vid D, B and a multivitamin. She also takes 1 Azilect 1 mg and 1 Lexapro a day too. Anyone near to this kind of dosage?

2- Could this be something else and what could it be? How to go about it. Back results were not too alarming. MRI not done due to movements at times. Once MRI was done under GA, 6-7 yrs ago with not much findings.

3- If this intense immobility in your experience only PD related? (but why few nights, why meds not working for these hrs). Mornings she is all around mostly with 25% of night issue or 10% at times. She is working at home, driving, shopping with little difficulty for 30mins minutes which gets better with rescue dosages but no where as bad as nights.

Thanks Fellas!

#18 she-ra

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Posted 20 May 2013 - 06:32 AM

Kim, I am in Gwinnett County but I work in downtown Atlanta.

Naked PJ day? My birthday suit needs to be ironed first!
Sheila ^_^

#19 KimAgain

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Posted 20 May 2013 - 01:02 PM

Optomist,

I wish I could help, but the closest I can come to this is when they took me off meds and had me switch my DBS off for testing--this was all 24 hrs before an appointment--and, in the hotel that night, I awoke in the middle of the night to find myself completely immobile. I was hanging half off the bed and half on the floor and could not move a muscle to help myself. Luckily, I was able to wake my husband and he pulled me back into bed. After the testing, I could not wait to switch my DBS back on and start taking meds again!

What does her MDS say??


Kim, I am in Gwinnett County but I work in downtown Atlanta.


Sheila, my husband and I have a membership to an RV resort in Atlanta, I'll send you the details and let you know when we are next going to be there if you'd like? We'll light a fire and have s'mores!

Kim

#20 Optomist

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Posted 20 May 2013 - 09:42 PM

Not much from MDS..they say what a prime candidate she is for DBS at this yound age but ignore the fact that she is not mentally strong and beside loves her hair so much :razz:

We are not sure why she has these bouts of paralysis and specially why at nights 80% of the time or so. She takes same meds at all time.

Puzzled..looking for similar cases or fixes!

Thanks,

Optomist




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