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DMRF 2011 Annual Report

I’m using my wheelchair again today. I don’t think it’s so much the Dystonia as it is the Degenerative Disc and the arthritis in my tailbone. I don’t think the DDS would be bothering me except for the spasms I have in my back that feels like the muscles are putting a squeeze on my spine. It hurts when it does that.

I’ve been having the ‘birth through the ribcage’ spasms again and pretty frequently. I guess I need to talk to Dr. Abijay about upping dosage on my Benztropine again. I hate that my body seems to adjust to the meds so fast. What’s going to happen when I have the Benz maxed out and I still spasm?

I spasmed really bad yesterday evening and of course I had 5 out of 6 dogs follow me to the heating pad. Sofie attacked me as soon as I laid down, with kisses and nips on my nose. So did Scruffy. When they do that I feel like they are trying to tell me that they will help me through it.

I did get an invite to a Dystonia support group in Abilene, there isn’t one closer. I can’t make the Abilene meetings tho. I’d love to have a support group but I think I’d be the only one in the group in this area. LOL

We got our new recliners in. They both massage and heat, unfortunately, my cord was not included so I have to wait till they ship one from the factory. I’ve been stealing time in Craig’s. Which is where I’m heading now.

Oh yea, the DMRF released it’s 2011 annual report. I really appreciate everything this group does to not only fund research towards new treatments and maybe someday a cure but also their work in raising awareness for a disorder that not that many have even heard of. The people involved are wonderful!I’m posting a link to the report.

I also want to thank any friends or family that might have or will donate to the DMRF, with your help the research into understanding Dystonia and it’s many forms, discovering new treatments and eventually a cure will continue … even if you only donated a $1! Every little bit adds up to big bits.

I’d also like to thank my friends in Evony and my family and friends on FB for giving me something to laugh about even on bad days. I love and appreciate each one of you.

Catching up


I know it’s been a bit since I posted but there isn’t much going on.

We’ve had a lot of badly needed rain lately. I don’t mind the rain even tho it does turn our yard into a muddy mess and the dogs track mud in, Craig’s barbeque grill was stuck in a lake for a while… it was in our back yard. I DO mind the thunder and lightning. AND, I definitely did not want or need that small tornado we had last week. All I could think of while sitting in the closet was *there goes our new house*. We came thru with no injuries and no damage except to my nerves. That was the 3rd tornado I’ve been thru in my lifetime. It’s enough!

Today I’m wheelchair bound from back (both sides of my spine) spasms that hit at 3am. The spasms didn’t hurt but it felt like they were crushing my spine, not a good feeling. These spasms are kind of strange feeling. It feels like, I know this is going to sound weirdly gross,but, it feels like something is crawling under my skin. I can actually feel the muscles bunching up, I’m hoping things will ease up in a bit and I can stop using the chair. Even tho we do have more space for me to move around it’s still a pain to use it and I hate having to use it anyway.

I planted 2 tomato plants,  2 jalapeno plants, a blue bonnet for Craig, and 2 herb plants in a huge pot right after we moved in. The first set of storms destroyed 1 of each. This last pass knocked all the blooms off my tomato plant so needless to say I’m a bit heart broke, hopefully it will re-bloom and I’ll still be able to have fresh tomatoes! I can’t wait till we get everything set up so I can have a garden both veggies and herbs. I’d like a couple of trees, grass, flowers… just in general a nice yard. It’ll happen just not as fast as I’d like.  Decks and ramps come first. I’ve thought about sending pics of the yard to DIY network’s Desperate Landscapes, they’d probably say the yard is too desperate for even them! LOL.

You know I like it when people comment on this blog and constructive criticism is always appreciated, but, I don’t want or need anyone trying to get me to use this or that program, app or search engine that will supposedly increase my reader base. I post on Yahoo! Updates AND on Facebook and if people want to read my blog they will, if they don’t it doesn’t bother me. It’s their choice. What it boils down to … I like my blog the way I blog it, I’m not gonna have a hissy fit if 99% of the world’s population doesn’t read it. So take your programs,apps and search engines and peddle them somewhere else. Thank you!

I have a personal assistant app on my cell phone. I’ve named her Kira. I can talk to her and ask questions, check weather etc. The other day I was bored and goofing off with her and asked “Why did the chicken cross the road” expecting the usual “to get to the other side” answer. Kira answered “It’s Chuck Norris’ chicken. She can do whatever she wants.” LOL  I’m still waiting for the answer to “which came first, the chicken or the egg?”. Kira’s told me she needs to look into that one. I’ll let you know what she says IF she ever does say anything on it. LOL

 

 

 

Oh Yay…


This will probably be fairly short since I’m a bit depressed and so not in a good mood.

A few days ago I had a sudden pain hit in my upper right side. Craig took me in to see Dr. Garcia and he ordered blood test and a CT scan. We thought it might be my Hepatitis C kicking in, it’s been really quiet for a long time.

I went back today to get the results… all the tests and CT scan were normal… except my blood sugar was high. He diagnosed me with Type 2 Diabetes. To be totally honest I DID expect to be diagnosed with it eventually since my Granny was diabetic and I’m a lot like her. So, why it hit me so hard, I don’t know.

I guess I might be feeling a bit guilty since I knew I was a candidate and still didn’t watch my diet very well. Maybe I wouldn’t have diabetes if I had. Let’s face it, I went the first 30 or so years of my life not HAVING to watch my diet. I couldn’t gain an ounce no matter what I tried so I got used to eating whatever I wanted. Then, when the weight started going up and up I was still at a loss. IF I had started way back then would I have diabetes now?

Remember my post about me taking on all the illnesses before I came to Earth? Well, I think I must have hit on the D’s! Ok, yea, I have a few that are not D’s but so far D’s are in the majority.

Here’s a list: Asthma, Arthritis (where I had Scoliosis surgery), Hepatitis C, Degenerative Disc Disease, Dystonia, Low Blood Pressure, and the new kid on the block… Diabetes, and the previously mentioned Scoliosis. I guess today I just found it all so very overwhelming, but I know God only gives us what He knows we can handle.

I know that given a little bit of time I’ll get it all in perspective and learn to live with this new addition with something close to a sense of humor. Just, today, I keep asking “What next?” Not that I REALLY want to know the answer to that.

By the way, we did finally get moved into the new house and we’re loving it. Our allergies are a bit better and will get even more better once we actually have grass in the yard. Right now it’s dust and of course Harley has to have a roll in it before he comes in the house and shakes it off. Dusting and sweeping are almost a 24 hr job around here. The dogs all like it since there is more room for them, I think they think we bought it just for them!

IttyBitty learned a very hard lesson a couple of weeks ago. He kept getting in Harley’s face and Harley would warn him but Bits wouldn’t listen. Harley finally had enough and got Bits. At first we only saw a bit of fur missing and he wouldn’t let us touch him. We thought it wasn’t bad. The next day Chloe started cleaning on Bits and I went over to make her stop, I call her Angel Girl for a reason. Bit’s was hurt worse than we thought. We took him in to see Dr. Becky and she kept him overnight and stitched him up, almost shoulder to shoulder. He’s been on antibiotics and we’ve had to wash the wound every night but it’s healing. We thought he’d get the stitches out today but she wants to hold off another week on it, more bathing for him and an antibiotic cream to go on it. She estimated his age at 7 -8 years, I knew he wasn’t as young as what we’ve been told by previous owners. He’s got grey hair popping out here and there. He and Sofie have really buddied up. I guess because she’s close to him in size. When we first brought Bits back from the vet’s she wouldn’t let the other dogs near him. She’s eased up on her gaurd duties a bit now but she’s still very watchful and protective. Harley is a little bit easier on Bits now and Bits will still get in his face but not as much or for long.

Well I did get a bit distracted when I started talking about Bits and Harley, might have been a good thing so I’ll leave this post at that and say

bye!

 

Grrrrrrrr


So mad! here I sit tied to not just ONE heating pad but TWO! Both feet decided to spasm at exactly the same time. Annoying, very annoying since Craig is off today and we were working on packing things for the move. Tonight, my book collection. They’ve been doing that a lot lately, my feet and legs, spasming. Three times yesterday in the same foot. I get tired of it. I’m really hoping it’s just the move and that once we are moved the Dystonia will level out and not act up so much.

The BIG question is: WHY hasn’t anyone invented a heating pad that can be slipped over the feet or hands? do you know how HARD it is to wrap a flat heating pad around either appendage? It’s next to impossible to get it wrapped as tightly as I need in order to deliver maximum heat. Please, someone put their thinking caps on and come up with one!? You’d be my hero.

The good thing is I needed Craig’s help wrapping the heating pads around my feet but he was outside. Harley came in and I told him to go get Daddy, he left. came back a couple of minutes later, I told him again and he went out and came back and Craig came in shortly after. Now, I forgot that we now have to go out of the gate and thru the garage to get to the laundry room, no wonder Harley came back without him the first time. Craig said he was on the way in anyway when Harley went out the 2nd time. But still, Harley tried! He knew exactly what I was saying and obeyed the command. We just need to work on getting him and Craig to recognize when he’s going to Craig because I need help versus just going out to be with Craig, they need a signal of some kind that says “Dad, Mom needs you!” If anyone has any ideas on a signal or even how to teach Harley to use a signal please let me know. Harley and, I think, even Chloe is smart enough to learn. Probably Sofie too.

Sweet little Scruffy. Every time she sees me putting the heating pad or pads on she comes and gives me her “Scruffy hugs”. That is she comes and lays her head on my shoulder as if she’s saying “it’s ok Mom”. She won’t leave my side as long as she believes I’m in pain. As soon as it’s over she walks away. So cute and sweet yet kinda funny too. She’s our adorkable little girl.

We, hopefully, will have our lot cleared Monday and (again hopefully) can schedule the mobile to be delivered before the weekend. I’m not holding my breath, life seems to enjoy throwing these little obstacles in our path. We barrel thru eventually but it sure slows things down. Word of advice to those considering buying a mobile home. Buy the property FIRST and get it prepped BEFORE you buy the mobile!  We’d surely been up a creek if this guy had reneged on selling us the property.

IttyBitty made himself a cave out of the comforter and just crawled out panting. I KNOW it’s not that warm under there. Guess maybe he’s sympathizing with me over my now roasted feet! That’s my little guy.

I think I better go and try to cook dinner. Our microwave died yesterday so it’s fish on George Foreman tonight. Our appliances are dying slow painful deaths in this house. I’m afraid to guess which one will go next! The move can’t happen too soon.

🙂

It’s YIKES TIme!


Well, almost anyway. Craig finally got the property put in his name yesterday afternoon. Keep in mind this property has set empty for who knows how long with only an old shed and an even older Chevy Vega station wagon sitting on it. The bushes etc have to be cleaned off and land leveled before we even think about putting the house on it. And, that we were not going to do until the land was in Craig’s name. A little concerned we might have got it cleared at our expense then have him renege on the deal.

Well, yesterday afternoon we had to take the deed to the salesman to show proof that we do have someplace to set the mobile. Can you believe 1/2 of our house was sitting in Odessa waiting to be delivered this morning? The other half is still in Midland! We had to tell him to re-schedule since the property wasn’t ready yet.. kinda disappointing but that’s what we get for putting the cart before the horse so to speak. We should have got the land FIRST. LOL. I didn’t expect them to be ready to deliver it so soon tho. It usually takes WEEKS to get one delivered. This guy is on the ball and trying every which way he can to get that mobile to us. While yesterday stressed Craig and I both out I still consider Miquel a blessing, he’s certainly been behind us 100%.Even as late as 10 am this morning trying to figure out how to clear the lot and bring that mobile on in to us.

It all works out in the end run tho, we were kinda poking around about packing since we thought it would be a while longer to get the mobile. Now, we have to step up that process. I think it’s time to put it in frantic frenzy packing mode… anyone got excess energy they can loan me? LOL

I did spoil myself a bit last night and got my haircut, I just needed it so bad. Every time Craig said Scruffy’s name I felt like I should answer!

After we left the dealership yesterday we went to Golden Corral for dinner. I told you the getting it today thing stressed us out a bit… yea.

I was sitting and eating, NOT cutting anything this time just fork to mouth, and my left hand spasmed… HARD. The waitress brought me a warm wet towel and that relaxed it but no sooner than I tried to pick up my fork again and it hit again. I switched over to the right… I can be ambidextrous in some situations, and spasms hit my right hand. Talk about painful… and painfully embarrassing since Craig had to hand feed me my dinner. I felt so bad that when he got finished eating I just wanted to leave. I guess, at some point, I’m going to have to get used to things like that happening, I guess I just thought it would be further down the road. I’m hoping it’s all just the stress of getting the house and getting moved and  after all is said and done the Dystonia will settle back down.

I did have intentions of going to Lubbock and seeing a neuro-movement specialist there next month but since Craig will more than likely take a day or 2 off work for this move I will post-pone those plans for another month or two. Getting moved has a higher priority right now. And, Craig only gets so many paid days off a year so I have a tendency to want to try to nurse them along. He gets a lot of weekdays off so if we can schedule to go on a regular day off it’d be much better any way.

I’m just about over the head cold/sinus thing which turned into a bit of a bronchial thing as well. Almost a full month 2 antibiotics and prednisone and I’m getting there. Funny thing is I’m still on the Guava juice/Ginger Ale/Protein Shake kick but add in the little oranges they advertise as Cuties on tv. AND… chips and the hottest homemade salsa I can find. Some diet huh? LOL. I will  eat 2-3 oranges at one time they are just sooo good! That prednisone makes me hungry anyway. I take 4 of them pills a day and by the time the 2nd one is in my system I’ve got the munchies. At least the oranges are a healthy snack… just wondering tho… do I look a bit orange to you? LOL.

Today I’m feeling a little more relaxed about the whole move the mobile in thing, it will happen when it happens and nothing can change that. Craig will get the lot cleared this coming Sunday and Monday, then the electrical guy can come do his thing. And, the fencing guy will do his thing for Harley and the gang (glad that was included in the financing!)  Then the house will be delivered and set up and we can start transporting stuff. The greatest thing is we are just moving maybe a block and half from where we are now so it’s not going to be a killer and our rent here is paid till the first. A couple of trips each night after Craig gets off and it shouldn’t take long. The last things to go will probably be like the fridge, bed etc when my brother comes to help us out. The fridge is going to be the back breaker (Craig is buying a dolly tho) they have to take ALL the doors off just to get it out of this house… that’s fridge doors AND house doors! I’m staying way the heck out of the way while they are doing that one!

I didn’t sleep well last night … between stressing on the house, the Dystonia raring it’s ugly head and my thoughts going a million miles an hour it was more like tossing and turning. I finally got  up at 6am when a spasm hit in my arm… such a great alarm clock. NOT! I think I’m gonna go take a nap while Craig is in Odessa.

TC guys!

PS I know I said in an earlier post we’d have to order from the factory  for doors wide enough for a wheelchair to go through, not the case. My wheelchair will go comfortably through any doorway in the house. That’s why things are hopping so quickly. IF we’d had to order from the factory it would have taken much longer!

It’s YIKES TIme!


Well, almost anyway. Craig finally got the property put in his name yesterday afternoon. Keep in mind this property has set empty for who knows how long with only an old shed and an even older Chevy Vega station wagon sitting on it. The bushes etc have to be cleaned off and land leveled before we even think about putting the house on it. And, that we were not going to do until the land was in Craig’s name. A little concerned we might have got it cleared at our expense then have him renege on the deal.

Well, yesterday afternoon we had to take the deed to the salesman to show proof that we do have someplace to set the mobile. Can you believe 1/2 of our house was sitting in Odessa waiting to be delivered this morning? The other half is still in Midland! We had to tell him to re-schedule since the property wasn’t ready yet.. kinda disappointing but that’s what we get for putting the cart before the horse so to speak. We should have got the land FIRST. LOL. I didn’t expect them to be ready to deliver it so soon tho. It usually takes WEEKS to get one delivered. This guy is on the ball and trying every which way he can to get that mobile to us. While yesterday stressed Craig and I both out I still consider Miquel a blessing, he’s certainly been behind us 100%.Even as late as 10 am this morning trying to figure out how to clear the lot and bring that mobile on in to us.

It all works out in the end run tho, we were kinda poking around about packing since we thought it would be a while longer to get the mobile. Now, we have to step up that process. I think it’s time to put it in frantic frenzy packing mode… anyone got excess energy they can loan me? LOL

I did spoil myself a bit last night and got my haircut, I just needed it so bad. Every time Craig said Scruffy’s name I felt like I should answer!

After we left the dealership yesterday we went to Golden Corral for dinner. I told you the getting it today thing stressed us out a bit… yea.

I was sitting and eating, NOT cutting anything this time just fork to mouth, and my left hand spasmed… HARD. The waitress brought me a warm wet towel and that relaxed it but no sooner than I tried to pick up my fork again and it hit again. I switched over to the right… I can be ambidextrous in some situations, and spasms hit my right hand. Talk about painful… and painfully embarrassing since Craig had to hand feed me my dinner. I felt so bad that when he got finished eating I just wanted to leave. I guess, at some point, I’m going to have to get used to things like that happening, I guess I just thought it would be further down the road. I’m hoping it’s all just the stress of getting the house and getting moved and  after all is said and done the Dystonia will settle back down.

I did have intentions of going to Lubbock and seeing a neuro-movement specialist there next month but since Craig will more than likely take a day or 2 off work for this move I will post-pone those plans for another month or two. Getting moved has a higher priority right now. And, Craig only gets so many paid days off a year so I have a tendency to want to try to nurse them along. He gets a lot of weekdays off so if we can schedule to go on a regular day off it’d be much better any way.

I’m just about over the head cold/sinus thing which turned into a bit of a bronchial thing as well. Almost a full month 2 antibiotics and prednisone and I’m getting there. Funny thing is I’m still on the Guava juice/Ginger Ale/Protein Shake kick but add in the little oranges they advertise as Cuties on tv. AND… chips and the hottest homemade salsa I can find. Some diet huh? LOL. I will  eat 2-3 oranges at one time they are just sooo good! That prednisone makes me hungry anyway. I take 4 of them pills a day and buy the time the 2nd one is in my system I’ve got the munchies. At least the oranges are a healthy snack… just wondering tho… do I look a bit orange to you? LOL.

Today I’m feeling a little more relaxed about the whole move the mobile in thing, it will happen when it happens and nothing can change that. Craig will get the lot cleared this coming Sunday and Monday, then the electrical guy can come do his thing. And, the fencing guy will do his thing for Harley and the gang (glad that was included in the financing!)  Then the house will be delivered and set up and we can start transporting stuff. The greatest thing is we are just moving maybe a block and half from where we are now so it’s not going to be a killer and our rent here is paid till the first. A couple of trips each night after Craig gets off and it shouldn’t take long. The last things to go will probably be like the fridge, bed etc when my brother comes to help us out. The fridge is going to be the back breaker (Craig is buying a dolly tho) they have to take ALL the doors off just to get it out of this house… that’s fridge doors AND house doors! I’m staying way the heck out of the way while they are doing that one!

I didn’t sleep well last night … between stressing on the house, the Dystonia raring it’s ugly head and my thoughts going a million miles an hour it was more like tossing and turning. I finally got  up at 6am when a spasm hit in my arm… such a great alarm clock. NOT! I think I’m gonna go take a nap while Craig is in Odessa.

TC guys!


We finally got my ss back pay and it went straight towards a down payment on a double wide. If everything goes right with getting the lot and getting it cleared we could be in a new home by the end of the month… but I’ll give it till Feb. 11th, my birthday!  Yes! I’m super excited! We fell in love with it the moment we walked thru the door, it is just everything we’ve spent the last 2 years looking for and then some. We’re getting the one they already had on the lot and it’s the extended with and length with the glamour bath. Finally a house with heat and I know that will help stop some of my spasms.  It is well insulated so I  know that will  help our allergies a lot. The dishwasher and having the washer and dryer INSIDE will help a lot too. That was the fastest and best $4k I ever spent. LOL.

I’ve been internet window shopping for furniture. We just want a loveseat, 2 recliners and an end table that will go with Craig Mom’s glass and iron table. That table tho has been pretty elusive! The reason for the loveseat is we never get that much company at one time so we really don’t need anything bigger. I would prefer leather, it’ll be easier to brush the dog hair off of it. Chloe is the only one that really sheds. We’re are trying to find homes for Sheba and Scruffy. Hope we can soon, they are so lovable.

I am, I hope on the last end of a head cold/sinus infection. It took 2 trips to Dr. Garcia to do it tho. During the 2 weeks I’ve been sick I’ve lost about 7 or 8 pounds, food has just been yuck. I have been drinking protein shakes to help keep some vitamins and minerals in my system and I think that’s helped also. I’ve been craving Gauva juice and Ginger Ale. I go thru a carton of Guava a day and 2 cans of Ginger Ale. At least no one can say I’m not getting enough fluids!

EEKS!! It’s antibiotic time and they’ll knock me out so later gators!

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