My mind works against me sometimes, especially with this "designer disease" that plagues my very core. Yep...along with all of the lovely physical afflictions and the cognitive crap that goes on once in a while something triggers a depression as deep rooted as the day is long, and I fight with apathy, sadness, feelings of unworthiness, and additional fatigue.
Last week, my youngest step daughter gave birth to a beautiful baby boy, he is gorgeous, as all of her sister's babies have been. I felt such joy and a certain sweetness to the event, even as far removed from it as we were. When the phone rang at 5:15am July 22 I KNEW he'd been born, and when I heard Mandi's voice on the phone, I started tearing up. Mandi sounded tired but happy, and incredulous that she herself felt a little shaky. I told her, well you just became an auntie! That's your little sister there...it's a pretty huge thing. I kept thinking to myself...wow, that's 4 grandchildren! And by Christmas this year, we'll have 5!
Later that morning, as I was working alone, I started feeling very ill and had to go home. The rest of the day and for two days after I fought a bad headache, stomache ache and malaise.
The other thing I fought, over which I had no control, was an almost crippling depression that set in so rapidly that same night I went home early, I hardly moved from the couch, kept my nose buried in a book and answered my husband in the minimal amt of words needed...so much so, he started acting like he was walking on eggshells around me. Due to the apathetic rendering of this depression, I really didn't care. It's a horrible thing to feel no control over one's mindset, to want to reach out and care but are literally unable to. I wasn't being mean or nasty or anything, though probably seemed that way because I am usually very loving and THERE.
I finally realized what brought it on....on Monday (day before Hunter was born) I spoke w/a woman a few years older than me who is in her 9th year of young onset parkinsons. She is contemplating a surgery called DBS-deep brain stimulation. Right now, she's taking 3 different medications. I asked her how she was doing about 4 years ago (where I am right now) and she said, Not too badly. She could move okay but was starting to get more stiff at that time, was only on one medication then..which is where I am. Now, she has hardly any facial expression, has a very short gait, bad balance and a myriad of other symptoms common with PD patients. It threw me into a tailspin I had no control over and took over my life for the remainder of the week.
This has happened to me now about a dozen times over the last 4 years, and my doctor has deemed it one of my symptoms, which is very "normal" for a patient with PD. By Monday I was pretty much back to normal (in MY book), not much depression, but cannot forget.
I have been turning over in my mind starting a group for patient suffering from parkinsons disease in Page. I know at least 4 other people not much older than I who have it. It can be done. People who have an illness not very common can benefit from talking to one another. The only thing I'd be wary of is those patients who are farther along having more brain issues, which could make them lash out.
I would also, on a personal note, would be a little wary of them looking at ME and saying WHAT? you don't have PD, you don't look like you do, you arent shaking, look, you aren't using a cane or drooling or shuffling, you have some facial expression, yadda yadda yadda....to which I would probably reply Walk a mile and a week in my shoes, buddy you'll be WISHIING you were at the stage I am in right now...it ain't a cake walk for me either. Though I do feel like a fraud sometimes because my symptoms are not very external. Nobody sees my internal tremor or feels my pain from rigidity. Nobody can tell I really concentrate on walking carefully so as not to drag my right foot or trip or lurch from side to side like a drunk (though sometimes I cannot help it). Nobody sees any of the other things, the cognitive issues, the depression, the bodily functions...any of it. I can still work full time, give or take a couple hours...I can still walk a couple miles in the morning (but ask me to put on my mascara without missing my eye a few times), I can still cook (but watch me drop the vegetable, the knife, the pot....), I can still have a cocktail or two a week (but choke on water and food), and can still read a good book (but cannot find words to make a simple sentence), I still look good (but you should have seen my tying my shoes and buttoning my shirt, it was a laugh and took forever it seems)...there are so many changes and the progression while slow is apparent. I am very good at hiding things most of the time.
Gary doesn't talk to me about it...I think he feels because he cannot fix it he's helpless. What he doesn't realize is it helps to be able to talk to him about it...but he needs to be knowledgable. And I don't know if he wants to be.
I don't need pity or empathy...but understanding and knowledge of the illness.
Wednesday, July 30, 2008
Numero Quattro!!!
We became grandparents again on July 22 at 5:15am (EST). At 6 lbs 9 oz and 19 inches long, Little Hunter was finally able to join us and make his mom and dad very happy and content! He is the cutest little baby...I wish I was computer literate enough to move a picture of him from one blog to this one...wll have to work on that. We have only seen pics of him but will be meeting him in person on Saturday and cannot wait! Tricia looks great and told her dad she & Justin are doing well. We'll be bringing our oldest grandson with us for the week, so it ought to be fun.
I haven't called Tricia since the week before Hunter's birth. Wanted to, that Saturday her family arrived from St George, but Gary had spoken to her that day and told me she was tired and the phone had been ringing alot. She was also just ready to have this baby! So I held off calling, out of respect and not wanting to interfere with this new time with Hunter, Justin and her family. We'll have plenty of time to visit and catch up all next week-in person!
I think Gary has gone around for the past week with a perpetual smile on his face. He is SO excited to see Tricia and Justin and meet Hunter "Oops", as he has dubbed him! He is SO looking forward to seeing Mandy, Rob and the kids on Friday, and having Mackay with us that week. He loves being a Tata so much, cherishes every moment spent with his grandchildren. Gary turns 47 this August so I think he looks at himself at this age and wonders where the years went. His girls were just babies themselves! And now they are all grown up, having their own babies. Again...what a wonderful life.
I haven't called Tricia since the week before Hunter's birth. Wanted to, that Saturday her family arrived from St George, but Gary had spoken to her that day and told me she was tired and the phone had been ringing alot. She was also just ready to have this baby! So I held off calling, out of respect and not wanting to interfere with this new time with Hunter, Justin and her family. We'll have plenty of time to visit and catch up all next week-in person!
I think Gary has gone around for the past week with a perpetual smile on his face. He is SO excited to see Tricia and Justin and meet Hunter "Oops", as he has dubbed him! He is SO looking forward to seeing Mandy, Rob and the kids on Friday, and having Mackay with us that week. He loves being a Tata so much, cherishes every moment spent with his grandchildren. Gary turns 47 this August so I think he looks at himself at this age and wonders where the years went. His girls were just babies themselves! And now they are all grown up, having their own babies. Again...what a wonderful life.
Tuesday, July 15, 2008
Postscript to "Wedding Blues"
When planning a wedding, definitely-DEFINITELY-look for, interview, consider a caterer. The one we used was worth every penny. The caterer we used is Bruce Brown Catering in Phoenix, website www.bbandco.com. Thanks for suggesting and kind of pushing for a caterer, Sophie! Besides the food being delicious, we didn't worry a bit about set up, clean up or anything in between. It was a blessing!
Also, I don't know his last name (because the kids hired him), but the DJ we used was outstanding. I have never seen a DJ work so hard and so pleasantly, or have so much fun doing it.
Also, I don't know his last name (because the kids hired him), but the DJ we used was outstanding. I have never seen a DJ work so hard and so pleasantly, or have so much fun doing it.
Finally
I cannot stand the sound of someone hauking up a loogie. And there is a kid in the lobby waiting for his mom to come out of physical therapy, walking around playing his hand held video game and hauking up loogies. Where he is putting them, if anywhere, I do not want to know. We fortunately have many plants in the lobby, creating a jungle-like appearance. Perhaps one of them is the lucky recipient of my little friend's mocos.
Seems we are the only community in the state not getting slaked with the rains of monsoon. Flagstaff is getting hit every afternoon and the valley even gets their share a few times a week, which is so desperately needed. We get beautifully colored skies and dark, ominous looking clouds, winds enough to blow one from their shoes and promising droplets that bring a delicious smell and cause spotty windshields...but none of the torrential waterfalls the rest of the state is having. I suppose our time will come after the rest of the state has drunk their fill.
When we first married, Gary played ball every summer for the city league, and our summer nights were spent in the cooler baseball fields nearby, the kids running around with friends and me cheering the team on with the other wives. He played until fear of further injury stopped him from doing this sport he loves so much. He'd already ripped up his quads and shoulder muscles, and so 6 years or so ago, he quit playing. Being over 4o by that time didn't help sway his decision. But after working out for the past half a year and getting back into shape, he decided he'd give it another go and he's back to playing ball with a team of younger men, and one man a bit older than him. So far so good, no ripped or torn muscles though he had a beautiful black and purple bruise on the back of his knee for a few weeks, just from the exertion during the game. he doesn't remember getting hit, so we can only surmise it's from the running, sliding, jumping, etc. He is quite in his element.
We are awaiting our 4th grandbaby, Hunter Riley, to be born in South Carolina this month! After that we'll have a few months then our 5th grandbaby in December! I feel so much happiness when thinking of these things, sometimes my mind plays tricks and I think "Is this really MY life? Is any one person allowed this much love and contentment in their life?" God is so good to me.
Seems we are the only community in the state not getting slaked with the rains of monsoon. Flagstaff is getting hit every afternoon and the valley even gets their share a few times a week, which is so desperately needed. We get beautifully colored skies and dark, ominous looking clouds, winds enough to blow one from their shoes and promising droplets that bring a delicious smell and cause spotty windshields...but none of the torrential waterfalls the rest of the state is having. I suppose our time will come after the rest of the state has drunk their fill.
When we first married, Gary played ball every summer for the city league, and our summer nights were spent in the cooler baseball fields nearby, the kids running around with friends and me cheering the team on with the other wives. He played until fear of further injury stopped him from doing this sport he loves so much. He'd already ripped up his quads and shoulder muscles, and so 6 years or so ago, he quit playing. Being over 4o by that time didn't help sway his decision. But after working out for the past half a year and getting back into shape, he decided he'd give it another go and he's back to playing ball with a team of younger men, and one man a bit older than him. So far so good, no ripped or torn muscles though he had a beautiful black and purple bruise on the back of his knee for a few weeks, just from the exertion during the game. he doesn't remember getting hit, so we can only surmise it's from the running, sliding, jumping, etc. He is quite in his element.
We are awaiting our 4th grandbaby, Hunter Riley, to be born in South Carolina this month! After that we'll have a few months then our 5th grandbaby in December! I feel so much happiness when thinking of these things, sometimes my mind plays tricks and I think "Is this really MY life? Is any one person allowed this much love and contentment in their life?" God is so good to me.
Wednesday, July 9, 2008
Post Wedding Blues
The past few months have all lead up to the wedding, and now that its over and done with, I am left with a little feeling akin to that one might feel after spending a week at the beach. But counter-balancing that is a feeling of excitement and elation for the new couple, and tenderness for their new commitment to eachother, one forged before God, family and friends. It's amazing my daughter is married.
I didn't start to cry until my son and I looked at each other during the ceremony, and then the tears started flowing with both of us. My husband gave her away, shakily, and during the toast gave a tear jerking toast, and then she and he danced to the Hawaiian rendition of "Over the Rainbow" which had my sisters bawling. It was beautiful and we are so happy! More later, as I am at work!
I didn't start to cry until my son and I looked at each other during the ceremony, and then the tears started flowing with both of us. My husband gave her away, shakily, and during the toast gave a tear jerking toast, and then she and he danced to the Hawaiian rendition of "Over the Rainbow" which had my sisters bawling. It was beautiful and we are so happy! More later, as I am at work!
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