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#81 sarahjo

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Posted 16 September 2013 - 11:07 AM

Sheila: hugs to you been there and vented on here so vent away, and know that we are here to listen and a virtual hug is already around you. Bless you,,,

sarahjo



#82 she-ra

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Posted 16 September 2013 - 12:42 PM

Thanks so much.  I had one more huge sobbing cry and now I am done. Got on the treadmill during lunch and worked up a sweat.  I think I will be fine.  I am one of those that wants to be in control of my emotions and when I am not I get frustrated and angry with myself.  The PD just heightens anything to do with my emotions.  Around and around we go....


Sheila ^_^

 

Current age= 61

Symptom Onset- 2009 (56)

 

Current meds:Sinemet 3X/day (25/100) 


#83 Beau's Mom

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Posted 16 September 2013 - 09:11 PM

Actually, She-Ra, expressing stuffed feelings in a way that doesn't hurt yourself or anyone else is a great stress reliever and depression remover. All the energy spent on repression is freed up to be used in more positive, healing ways. Exercise, for example. I bet you feel better after getting them out. The next step is learning to recognize when you're stuffing them again and let them go before the stress builds up. This is one way regular exercise prevents stress build-up. good work today!


Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#84 sarahjo

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Posted 22 September 2013 - 10:55 AM

I am having an errrr moment, and a bit scared get results from uterine  biopsy tomorrow, never had one of those, and saddened my daughter got to come home for the weekend which was wonderful, and now she has to go back, but she is doing wonderful so for this I am excited. main reason for fear is the possibility of something else happening. this is new for me, and its seems that my fear is causing issues with my husband cuz he is well we will deal with it as it comes, and I am a worrier my nature. any how I am going to church and hopefully be uplifted emotionally and spiritually. will let you all know my results, if you think or read this post those of you that pray say one for me, and those of you that don't then just remember me in your thoughts tomorrow at 9am. Thanks. sarahjo


Edited by sarahjo, 22 September 2013 - 10:57 AM.


#85 Beau's Mom

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Posted 22 September 2013 - 01:20 PM

Dear sarahjo,

 

I will be praying for you at 9:00 AM tomorrow as I will be on my way to see the surgeon and schedule the insertion (finally) of a feeding tube. I used to worry on a grand scale. Then I read a readerboard at a church in Arlington, TX that said "Why Pray When You Can Worry?" Truly, worry only serves to ruin the enjoyment of the moment I am in. I think it was the wise Jiminy Cricket who said, "Don't trouble trouble till trouble troubles you." I am guessing the sermon was on point today because that's just the way God works in my life.

 

Best wishes for a day lived fully in each moment, with your mind always exactly where your body is!


Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#86 Island Woman

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Posted 23 September 2013 - 10:01 AM

Need a PJ day but off to chiropractor for lower back pain and spasms....rough weekend...just want to curl up and cry...dam PD.  Can't let this over pwr. me.

 

Patricia



#87 she-ra

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Posted 23 September 2013 - 11:24 AM

Dianne, your advice is spot on for me today if I can only heed it.  I still feel fragile today with emotions just below the surface.  I can't seem to shake it off.  Back to the treadmill for me.  Prayers to you and Sarahjo today and everyday.


Sheila ^_^

 

Current age= 61

Symptom Onset- 2009 (56)

 

Current meds:Sinemet 3X/day (25/100) 


#88 KimAgain

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Posted 25 September 2013 - 07:38 AM

I've been trying the denial path again.  I got lost.  Denial is not just a river in Egypt it turns out.  (sigh)  Oh well...  I guess you can run (hobble?) from PD, but hiding is just not an option.  The curl up and cry thing?  Been there, done that.  Over and over again...  Privately, and not so much...  But, then I decided I had to just get over it and accept.  Yeah.  I'll get right on that, too, I hear you say.  Hey, I'm only a decade or so into this thing, it takes time...

 

So, here I am, out of the Quiet Closet again, at least for the moment, and I can see I have a lot of catching up to do.  I guess this calls for a PJ Day, you know, to catch up on my reading!

 

Hope you are all fighting the Big Boo Boo and keeping the faith!
Kim


Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  300mg Sinemet CR daily.


#89 sarahjo

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Posted 25 September 2013 - 01:00 PM

biopsy came back clear, yet the uterus is full of extra tissue, so doing what they call a medical dnc, and then meet with female dr. on Monday, and find out if we can just do the hysterectomy, got the cortisone shot yesterday in my left bursa, doing so much better today, got so much to day, and no energy to do it, but keep telling myself "I think I can I think I can...." till it gets done. lol anyhow I have gotten so wrapped up in all that is going on with drs etc. and I have been off on meds and boy oh boy, so again back on track, why do we do this to ourselves, I have now went to using this pill sorter thing that I lay meds out for the week, and this seems to help, and it stays in the open on counter, this seems to help also I've got my alarms on my phone so I am double reminded, and trust me when I am over due my body starts telling on me, crazy. have a question for you all how do you get past the fact of taking different meds I am only taking sinemet 4xs day, flexeril 1 x daily can be 2 but at present only 1, and Norco 3xs a day, and gabapentin 1x a day can be up to 2. that is a lot of medication, and sometimes I wonder what in the world, then have to just shake it off, so my question how and when do you get past the amount of meds, and just deal with it, also found out yesterday that my right side of body is 2-3cm longer than left so now gonna have that scanned to see if there is anyother issues, errrrrr, I think we just opened another can of worms.... lol. thanks for your prayer, I will be praying for you all as well. Bless your day.... Sarah jo  



#90 Daven

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Posted 25 September 2013 - 01:08 PM

Sarah Jo,  at some point in time it becomes routine.  There was a time when I wouldn't even take something for a migraine, I used to wait to see if it was a bad one.  I now take pills every four hours, every day, and have been on this routine for over 6 years now.  I don't take any PD pills during the day, so more may be coming my way someday.  You adjust.

 

Dave



#91 Jenette

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Posted 25 September 2013 - 10:15 PM

I still take a lot of meds but not as many as a little while ago. When the doc asks how xxxx is working I say I don't know cuz I always take it. I was able to slowly wean off about 4 but still need others

#92 MarciaJ

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Posted 26 September 2013 - 10:34 AM

I can't get going anymore. Slept most of yesterday. Maybe later.


<3.<3.<3.

#93 she-ra

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Posted 27 September 2013 - 06:53 AM

Marcia, I called in sick yesterday and slept till noon, got up for about an hour and then slept till 3.  I was even able to go to bed at 9pm and slept soundly all night.  I feel like a new person today.

 

The day before my PJ day I foolishly took my first Zumba class.  It was way too advanced for me and I could not manage the fast footwork.  I am sure I looked quite clumsy.  The instructor is a professional dancer and her brief demonstrations of the steps was not enough for me to grasp.  I loved to dance back in the day and thought this would satisfy that craving.  I will have to settle for dancing around the house and down the denial path with Kim!

 

I am sure this contributed to my exhaustion yesterday.  But, taking the class revealed that my symptoms are progressing into my right leg.  My leg felt stiff, swollen, like it was asleep and not getting enough circulation.  It was upsetting which further contributed to my distress. I started researching symptoms for MSA and this has given me a lot to think about.  The feeling of denial versus wanting a diagnosis wears me down.

 

But, today, I feel really good.  I hope this lasts a while.             

 

Please have a wonderful weekend!


Sheila ^_^

 

Current age= 61

Symptom Onset- 2009 (56)

 

Current meds:Sinemet 3X/day (25/100) 


#94 KimAgain

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Posted 29 September 2013 - 04:34 PM

I remember, Sarah jo, when I was first diagnosed... the very idea that I would have to take pill three times a day was horrific to me!  But, as Dave says, you adjust. with time, you simply adjust.  I started by carrying a small flask (with a fairy on it) of water, so that I'd always have a way to swallow my pill.  Word got around that I might have a secret drinking problem--I found it laughable.  

 

That was a decade ago... these days,  I can swallow a pill of, quite literally, any size without so much as a sip of water.   Family and friends are all so acquainted with the sounds of my medication alarms and what they mean to me and my body that, if they hear them before I do, they bring me a pill on the spot!  I keep meds in small pill boxes in end tables, bedside tables, the kitchen, my handbag, the car, and in my camper and my husband's vehicles--in short, everywhere! 

 

There was a time when I was all tree-huggy-hippie-like and would not so much as take an aspirin for a headache (I'd brew up willow bark instead), but  having this "dreadful disease" changed all that.  In the wake of my diagnosis, I was so offended that I, of all people, Miss Tree Hugger, had gotten sick, that I stopped doing most of the good things I had always done--after all, it hadn't helped me, had it?  But, in time, I returned to Yoga and meditation, walking and herbal remedies... in short, to all the things that made up me; I found myself again.  In time, you will too, I'm sure.  

 

I still have a tendency to treat PD like Voldermort though.  My Mother pointed out to me that I rarely speak the actual name of the disease I have, usually referring to it as, "this dreadful disease!" But, even that I am getting over.  Time is kind, Sarah jo, even if this dreadful disease--this Parkinson's Disease--is not.  It is a great big ugly slap to the head, but, in time, one simply learns to roll with the punches.  

 

Sheila, I do that, too!  Over extend myself and wind up unable to function for a day or two, just because I either felt I just had to get something done, was just determined to get something done, or else, was too embarrassed (proud? ouch) to admit that I could not keep up.  I am forever feeling that I simply have to do all that I can when I can because, If I don't, who knows, tomorrow I may have lost the ability altogether.  Is that a PD thing, a woman thing, or what?   As I type, I am myself sitting on the sofa, trying to recover from over doing things again.  Sheesh.  I worked my bum off preparing for company, only to have to cancel because my husband caught a cold!  Sad thing is, I was so tired from all that cleaning, that I was actually relieved.  Ridiculous.  

 

Oh well, the rest of the day is a PJ Day for me... I'd say YAYY!, but I'm too tired!

Kim


Edited by KimAgain, 29 September 2013 - 04:37 PM.

Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  300mg Sinemet CR daily.





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