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The Beast Within


The beast within my brain seems to have taken control of my hands today so I apologixe now for any mistakes I’ll make. It’s not worth it to backspace a million times to correct a mistake. 

I don’t know if others with this disorder feel like they have lost control of their bodies sometimes but today I feel that way and it feels horrible. Deep inside there is the urge to scream “LEAVE ME ALONE, JUST STOP!!!” Unfortunately, the beast just is not listeining today. Relaxation techniques don’t work with the tremors, ti seems the more relaxed I am the worse they get up to and including my right hand slamming into the side of my desk because I couldn’t get the swing under control in time. Onr of those days where sippy cups will be used and bibs will be my attire while eating. My bib is actually an apron and it’s used at every meal now. I only have one but I need more, concessions I make in order to remain sane at mealtimes. 

Craig has to cut my food for me, embarrassing in public as are the times he has to feed me because my hands have spasmed and frozen up or the tremors are too bad to carry the food to my mouth. 

Coughing, sneezing, hiccuping wakes the beast and I spasm. I no longer take those big stretches in the mornings that most people enjoy and take for granted. I miss that, it’s true you never miss what you have till it’s gone or you’re no longer able to do it. 

The inner child wants to curl up and cry, the adult says to suck it up, quit whining about it. You’ve got it, have had it for years you should be able to just shut up and carry on. But, then, the adult says it’s ok to cry about it sometimes. It’s ok to ask ‘why me?’ for the millionth time knowing I won’t get an answer.

It’s ok to hate my brain for THIS as long as I remember to appreciate it’s intelligence. Then, when I have days like this I wonder just how smart my brain is to let me go thru this and, yes, I realize it’s not really the brain but a chemical inbalance. At least my brain retains it’s sense of humor by reminding me I was never in balance in the first place. What a nitwit! Got ice cream? Got milk? Let’s shake baby! I think it’s forgotten that I’m lactose intolerant. Yes, my brain and I seem to be 2 different entities today. I’m wondering if that is also common among those of us with Dystonia. 

For the most part by being careful what I do and how much stress I allow myself to be under I can control the spasms except for the above mentioned bodily functions. Finding  a way to control the tremors so far has eluded me. It’s aggravating that I can’t control them,frustrating beyond measure when there is some things I wanted to accomplish today and knowing my hands will not coopereate well enough to get them avccomplished. I miss all the things I COULD do in the past. Painting, beading and hooked rugs to name a few of my former hobbies. To do any of them either triggers spasms or tremors. I AM trying to embroider an apron but it’s take 10 stitches, hand spasm, rest, try again, nope, quit for the day. I’ve been working on the same apron for a month now and am tempted to send it and threads all to Mammie to finish for me. I HATE giving up but it comes down to knowing which battles are more important to win. Like cooking,

I love to cook and even on my worese days I refuse to let it make me quit cooking. I’m learning on bad days to let certain kitchen appliances take over certain chores or to ask Craig for his help. The dogs hang around the edges of the kitchen like vultures waiting for me drop something so they can swoop in and clean up. Harley and Chloe are the main ones but Sofie and Scruffy have been known to cut in. Hershey and Sheba respect the boundaries we’ve set as a no pass zone in the kitchen and won’t pass until it’s time to dole out leftovers. 

I AM thankful for the things I do remain in control of. Like being able to shower without having supervision. Dr. Abijay firmly put his foot down on me being in any body of water without supervision. I’m pretty sure I can count on both hands how many times I’ve used our huge tub in the 2 years we’ve lived here. I would love to be able to just get in it and soak right now but I don’t think dogs count as supervision. 

I’m sitting here trying to remember what life was like pre-Dystonia. Maybe it’s a good thing I can’t because the things I remember doing that the Dystonia has stopped me from doing is heartbreaking. The things I WANT or NEED to do that now won’t happen is heartbreaking too. The main one is the feeling that I NEED to visit my parents graves at least one more time and knowing that that sort of trip is beyond my ability now breaks my heart. IF the converters we used in the old Tahoe would work in this Tahoe then it would be a maybe but they don’t. We have to have a stronger converter and it has to be wired in. I feel like I’m back at the beginning with no way to ease spasms when I go somewhere in the car. The heated seats do help with back spasms and if I can twist around right they do help the ‘birth thru the  rib  cage’ spasms a little. I’d also like to take a trip to the Texas Rangers Museum in Waco, not the baseball team, the other Texas Rangers. My maternal grandfather was a Ranger and I’d like to have more information on him since he passed away when Mom was 7 years old. He was a deputy in Austin and killed in a shootout with bank robbers. Even tho I never met him I still respect him.

Lately tho I seem to be having more spasms in my feet and legs. Feet are hard to deal with, they hurt when I sit and they hurt when I stand and it’s darn hard to wrap a heating pad around them. Someone please invent the foot heating pad! I’ll buy 2! Please?! 

Have I moaned and groaned enough? My hands are saying I’ve used them enough for now so maybe I’ll just go sit in front of the boob tube and watch everything I recorded… all the Star Wars and a few other things. At lesat then I can lay my hands in my lap and let them do their thing without being too frustrated. The only problem I’m having is deciding what’s for lunch… sandwich or a hot bowl of soup in my lap. Probably the sandwich or something that’s less dangerous than hot soup! 

Welllll…..


We’ve finally hit cool/cold weather and had a couple of weekends where the ice was pretty bad. Needless to say that even with having central heat my Dystonia reminds me that it doesn’t like cold weather. It’s mainly hit my arms, hands, legs and feet. Not been fun at all. Last night when I stood up from my chair in the living room my legs just almost didn’t want to hold me up, it took a few seconds to get that under control. Craig was already in bed sleeping and Harley was sleeping on the floor in front of my chair, sure didn’t want to wake Craig OR Harley with something like that.

Speaking of Harley he’s getting more white fur around his mouth and nose. He’s 7 years old now and sleeps most of the time. He’s still my big baby tho. I just can’t imagine what our life will be like without that big lug in it, I try not to think about that much it’s just too painful.

Hershey has settled in nicely, he and Chloe hang out together in the back yard just like old times. Old Bill taught him some manners and I honestly believe he and Harley are the best behaved dogs we have. Sorry girls, but y’all fuss and fight too much! Hershey will be 7 in January, so hard to believe he’s getting old too. He’s learned how to help me with my Dystonia by letting me lean on him when I need to. One day both he and Harley were my leaning posts, they are learning to work together.

I can’t believe it’s almost Christmas! We’ll be putting up our Christmas tree this weekend, I hope. It’ll be fun decorating… I’m such a kid when it comes to Christmas. I think instead of asking for a THING this Christmas I’ll ask for all the stuff we’ve needed to do to get done. I’m hoping we can get the back room in order so I can start sewing again, it’s been ages and I love to sew. I also want to do some furniture rearranging in this room so I can bring another cabinet in to put the printer on, it’s on my desk and it takes up room. I have 2 tall bookcases in here and I’m thinking if we get that back room organized I can put the one with all my craft/sewing and recipe books back there then move the bookshelf with all my novels on it over to that spot and have the cabinet next to my desk. I also want to move the desk we inherited to the bedroom and put the electric fireplace in here. This room is the hottest in the summer and coldest in winter and that fireplace would sure help out. There is still a lot of things I want to do in this house. LOL it seems that once we got computers up and the tv going everything else just fell to the wayside. We’ve been here almost 2 years and have not completely unpacked… yes, I see a yard sale in the future. Face it, if it’s been packed away that long and we haven’t needed it or used it it’s time to let it go! There are just certain items we won’t get rid of.

Craig went to the Baylor/Tech game without me this year. I was so miserable that I couldn’t go but we were having problems with a couple of the dogs so I had to stay home for that. The Bears have only lost one game and are BCS Champions, Fiesta Bowl bound! So proud of Art and the team. Craig and I agreed that next year if both of us can’t go to the Baylor/Tech game no one goes. Yes that’s how miserable I was without him! At least we found out that I can manage even the big Dystonic episodes without him. Yea I had a couple of biggies, mainly those birth through the rib cage spasms. I absolutely hate those.

My tummy says it’s time for food… my brain is asking “What kind of food” My tummy says it doesn’t know yet. LOL  Guess I better go to the kitchen and figure it out.

Hangin in there


Nothing new really to post about so this may be random this n thats. Yea, I know I do a lot of them.

I’m back in to playing Evony again. Kauper got me in a great alliance and I’m building, building and building more and more troops to get troop count where it should be. I’m also having to rebuild wall defenses in both cities since I got attacked the other day. Thank goodness Kauper, Bean and Money look out for me and are willing to help. I’d be lost without their guidance, so much has changed especially the battle and defense rules. They are using more rams and catapults than we did way back when and now we have to have rolling logs and trebuchets (falling rocks) on our walls where before we never messed with them. I have to constantly attack level 10 NPCs (non player cities aka barbarian cities) just to keep troops fed. The NPCs have a lot of food but it never seems like it’s enough. I’ve come to the conclusion that no matter what anyone in Evony says… my troops are not people type troops, they are total pigs.

The Dystonia gives me a little trouble now without the Benztropine. Trying to shampoo my hair can come close to triggering a spasm in the shoulder blade area, those are hard to get heat to. The heat in my recliner died so that’s no great help just glad I’m not having so many back spasms now. I get them in my feet more often, those hurt. They hurt when I try to stand and they hurt when I’m sitting, just no way to get comfy when they hit. Hopefully Tuesday I can pick my refill up and be good to go for awhile longer.

As far as my chair goes, to me it’s totally useless now. I’d rather get rid of it and just get a regular chair that doesn’t swivel! The dogs have a field day with the swivel part, I can’t count how many times they have hit it just right and spun me completely around. I think a regular chair would take up a little less space too and space in our living room is at a premium with that huge couch. I’d like to get rid of that and just get a love seat but it seems Harley and Hershey have claimed that for their bed. Question is… do I continue to spoil them or get what I want?

Sofie has been a temperamental little girl today. I told her she needs to go back to sleep and get up on the right side of her doggy bed. She’s sleeping now, without her Squeak or Bully Bear. She loses her toys when she doesn’t behave. You’d think she’d get it but she doesn’t. Poor little Scruffy has taken to hiding under my desk because of Sofie’s temper. Apparently the other dogs are not supposed to be in here with me.

The Diabetes is doing good. I’m not poking myself everyday. My body lets me know when I’m in trouble with it and I can take steps to correct it. I always keep some kind of snack on hand for that. The cataracts in the left eye are worse. I have to use a magnifying glass to read a book so I don’t do much of that. Hopefully I can have eye surgery after the beginning of the year. It would be NICE TO SEE AGAIN!

We got a letter from the County Tax Assessor, they want us to pay taxes on this property as far back as 2009. WE didn’t OWN this property then! February will only be our 2nd year here. I guess come Tuesday we will have to go have a talk with them. Meanwhile, we’re still waiting to go to court on the lawsuit with our former landlords, they’re dragging their feet. Wish we could get that settled, done, over with.

As far as my Baylor Bears are concerned, they’ve won every  game so far. Yesterday’s game had me on the edge of my seat but they pulled it off. A great coach makes a great team, a great team makes a great coach. It works both ways. We’re not sure if we’re going to get to go to the Baylor-Tech game this year. I hope so, but if we do Craig says we’re driving. He doesn’t like it when the plane takes off… being in the air and landing doesn’t bother him but the take offs almost trigger his anxiety. We were really lucky to sit in the front row and have such sweet flight attendants. They talked to him and tried to help keep him calm. I did better than I thought I would. It seems I have a love/hate relationship with flying. I love it but with the Lockerbie incident and 9/11 it scares the crap out of me.

Staley is 6 weeks away from having baby Kora, I can’t wait. I know she and Jeff are so excited too. I know they will be great parents they’ve had such good examples in their own parents. We sent up a cute little outfit, Staley seemed to like it. I’d love to see a picture of the baby wearing it. I bet she’ll look adorable. I can’t wait to see the baby, she’s going to be beautiful!

We need to go to Mammie’s soon. She’s got a dead tree she wants us to cut down and chop up. We have to share the wood with John and Celinda but that’s fine. It will be some wood for our fireplace for the winter and that does save a bit on the heating bill, sometimes even the cooking bill since I make hobo dinners in the fireplace. In case you don’t know what a hobo dinner is: you get, in our case, 2 squares of foil big enough to hold a pork chop, sliced potato. a slice of onion and a couple of spoonfuls of green beans or peas.. in Craig’s case probably carrots or extra potatoes. Put a dab of butter and some salt and pepper and wrap it up. Toss it on the coals and let it cook till the pork chop and potatoes are cooked done. I usually spray the foil with Pam to keep everything from sticking. Have that with a quick green salad and some bread toasted in the fireplace and you’ve got a complete meal with very little cleanup afterwords.

Tonight we’re having chicken breasts with a Balsamic Vinegar and honey reduction, sounds fancy right? So simple and good tho. Not sure what veggies we’ll have. Craig will probably want my rice dish, easy enough to make and only takes about 25 minutes. I do have some frozen stir fry veggies so I can steam them and top them with a little bit of butter and that will be good.

Ok now I’m getting hungry so I’m off for a snack. Until next time be good and have fun.  :)

This n That


Been awhile since I posted. We got Hershey back, the man that had adopted him from us when we first moved here passed away and it was his wish that we get him back. I don’t mind, kinda missed that big, lovable, goofy dog even if I did get to see him whenever I wanted. His son asked if he could keep him since he was ‘so attached’ to him. Well, if being attached means not petting him then he was really attached because when we got him back he was head to tail in fleas and ticks… if he was petting him he would have felt them. We kept Hershey in this room for a couple of days and ended up not only picking ticks off him and the other dogs but picking ticks off the walls as well. Poor guy was so matted I couldn’t do anything with him. He’s had his shots and a good grooming now and he’s a happy boy.

It’s good to have him back, Chloe has had fun now that she has him to play with. He even gets Harley up and moving a bit more. 

The Dystonia keeps getting worse and worse. I wear bib aprons now when I eat. Hand tremors at the wrong time can certainly make a mess of your clothes. 

The spasms in general have been worse. I ran out of my Benztropine and since Obama cut hubby’s HSA in half we have to pick and choose which meds we are going to get. I have to drop my Advair completely, we ran out of money in the HSA account and the co-pay on that is $60 which we can’t afford any more. I do have plenty of my nebulizer meds so that will sub for Advair for now anyway. 

We got a new Tahoe and for some reason the converters don’t work well and I can’t use my heating pads in the car now. That’s made it a little rough on me when we go to Odessa for shopping etc. I think we need a higher rated converter. Those things aren’t that cheap either.

We lost one of our Deputy Sheriffs last week in a shootout at the Stripes Convenience Store. It was over a stolen pickup. The suspect was shot by another deputy and is in the hospital. Then Friday, the suspect’s son called in bomb threats to the school here in McCamey and the one in Rankin and to the Court House in Rankin so they were all on lockdown for most of the day. They caught the kid, I know he did it because he was upset about his dad but his dad was in the wrong in the first place. I just hope with a bit of grief counseling he will be alright. I hope he isn’t trying to follow in his dad’s footsteps. Needless to say the whole county is in shock and in mourning for the deputy and the kid’s actions just made all that worse. But, we will pull through as do most small communities when tragedy has struck. 

The deputy was only 37/38 and had 2 sons ages 10 and 15. My heart goes out to them because that is the age where kids really need a father. I know the other deputies will step up and try to be as much as a father figure as they can be. 

Well, that’s all the no news fit to print. I’ll try to get back into this blogging thing.

 

ImageHershey right after his grooming.

 

Just Not a Good Day


My left hand at this momehnt is beeating like a drummer on my left leg … the right is shaking a lot tooo. Also noticed when i tried to talk to Craig i had to force the words out. Dystonia is having a field day and i don’t appreciate it. Keep thinking if i had a cup with a lid  ice cream and milk i could make a shake. haha. the dogs know i’m having a bad time they won’t take their eyes off me for efwen a sec. apologies for typeos no i wil lnot fix them as i ;might actually make the m worse!

emothionaly  this has me bout readey to criy i’m trying to play fb games but hands don’t cooperateeeeeeeeeee so no more today goin to go call neuro and see if i can take an extra benztropine to help. gonna watch tv… not using hands much to do that. thinking sandwich for lunch… no soup might spill it! dogs would love that tho!

 


The visit with Dr Abijay went well yesterday. It took 4 tries to get a BP on me and she could barely get a pulse. I was starting to wonder if I was still living!

I told Dr. Abijay about my back spasms and he replaced the Baclofen with a muscle relaxer to see if that would help better. He also said that if this didn’t work we might consider doing some shots in my back. Yuck! I really, really hate needles. Which is kind of strange since I poke my finger every morning to check glucose levels.

The eye exam wasn’t so good. She told me 2 yrs ago that I had a cataract starting in my left eye. Now, that cataract has spread covering almost the entire eye PLUS I’ve got a second kind of cataract in that eye that is just as big, this one caused by my Diabetes. I also have one starting in my right eye. Stranger still she said if it wasn’t for the cataracts I’d have close to 20/20 vision. She gave me a new prescription for glasses and told me when the cataracts get too aggravating then we’ll look into doing surgery. Right now it just bugs me a little I can still see out of the inner corner of the left eye fairly well and when it gets too bothersome I just log off the computer and go watch tv since it’s a bigger screen the cataract doesn’t bother me so much. She was really glad to see that Glaucoma had not started in since that can be caused by Diabetes too.

I did talk to Craig about the eye surgery and he wants me to get the left eye done while my right eye is still good instead of waiting and doing both at the same time which was what I was thinking about doing. I understand his reasoning, since I’m home alone with the dogs all day he’s afraid if I got them both done at the same time he’d worry about me taking care of myself while they healed.

Best news of the day was I had lost about 10 pounds since my last visit in February. Yay for me! I’ll get it down further slowly but surely. :)

I know this is short and sweet but I want to get back to FaceBook before this eye aggravates me too much! LOL


I feel like my body is punishing me for having such a good time on the 4th. My lower back started spasming as soon as we got to the park ( guys that work with Craig had a bbq for everyone) and by the time we were ready to go see the fireworks I was in my wheelchair and had taken a Baclofen.

Yesterday around 2am I woke up with that ‘birth thru the ribcage’ spasm… another Baclofen and heating pad. Then, around 1:30-2pm I got a really bad one left side of my abdomen and almost all around to my back. More Baclofen and heating pad. I took a Clonazepam when I went to bed so I could sleep, that knocks me out so I did get a good nights sleep. I have a Baclofen/Clonazepam hangover today tho. Apparently, I’m NOT supposed to leave the house to enjoy myself just to do the mundane things like grocery shopping etc. I do have an appointment with Dr. Abijay next week. We’ll probably up my dosage on the Benztropine.. again!

These attacks have really got me down and I don’t know why. I’m used to having them and I’m used to being limited in what I can do anymore. It’s really kind of depressing.

The dogs were really sweet with the spasms I was having yesterday. Each time I got in the bed on the heating pad they’d jump up there and give me ‘puppy hugsp and ‘puppy kisses’, Scruffy is always in the lead on that one. I call her my nurse dog since she won’t leave me till the spasms stop.

That’s about all I feel like writing right now. Going to go get in Craig’s recliner and turn the heat and massage on. My back is sore from back spasms.

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