Now as the tenth anniversary of the horrific day in US history when four planes were hijacked comes to an end, I realize how saddened I really feel. So much has happened since then but also one of the biggest life-altering ...
911 was one of the most horrible days in history and although it was horrid, it did not destroy my family because four days earlier, Elyssa was born. Life goes on and not even evil like the bastard like Bin Laden can try destroy a love as great as Elyssa or as many loves of families and their loved ones.
I remember right were I was on that day and the soonest I got home, I held Elyssa very tight. The horror of the day, far from my mind and focused on the miracle who I held in my arms.
May all the victims of 911 rest in peace and those who are left behind find the strength to go on. I still keep the survivors in my thoughts for they suffer the losses every day. I pray they have comfort in the fact that their loved ones are in a better place and those who are responsible will pay the price one day... maybe not right now, but one day... yes.
There are some incredible people in this world... both in my family and strangers. My faith in others has been strengthened since my basement flooded. Instead of focusing on all I lost, I've been focusing on how incredible people are and how giving of themselves. My brothers and their wives, and my sister have been my heroes for a long time now and now, after all they'ev done to clean up, redo the walls, and paint, we're closer to getting it done.
Then my nephews have gone above and beyond right along the side of their parents. Two of my nephews were saddened when they found out that Elyssa's iPad was ruined in the flood. After trying to restore it, it failed because it was just too dead. One nephew went to see a friend who works at an Apple type store and when he found out that the iPad was given to Elyssa (a special needs child) from a special funding, he exchanged the iPad without a question.
My brother brought the iPad over to us last night and he handed it to me and tears rolled down my cheeks. Elyssa was so excited, she went to bed grinning from ear to ear, and of course, expecting me to stay up all night to restore all the apps. LOL NOT. I love her but she doesn't know what no sleep does to me ;-) Been doing it all day and almost done. I'm SO excited for her... and ummmm... for Angry Birds. ;-)
Saying "Thank You" doesn't cover what is in my heart. I'm so blessed to have people I know and don't know step up to help someone in need out of the kindness of their hearts. See - there are still those types of people in this world and not only this situation, but I'm finding in them in every which way I turn. So, look in the mirror and say "thank you" to yourself and say it's from me.
I've been such a slacker as far as my blog is concerned and I can't even explain why... writer's block? Perhaps a little. Busy? Yes, somewhat. Health? Yes, definitely. Lazy? *blush* Yeah, somewhat. Just a big slacker? YES, I think that covers it.
It's just frustrating.
Thanks to some lung damage from the pulmonary hypertension, I have to wear oxygen 24 hours a day now and it's pretty much a pain but on the other hand, it's nice to get the oxygen I need.
The first week in August, tragedy struck when our basement flooded (where I live!!) and everything was in 8 to 12 inches of water. Ack!! A storm drain backed up and I woke up to water surrounding me. What a rude awakening... however, there were other houses in the neighborhood who were hit a lot worse; they had two feet of water.
It took about a week to get all the water out and to spray Chlorox all over to prevent the mold. Since then, every chance J Dee, Bob, Adam, or Travis could come over, they did to work on the walls.
I've been displaced upstairs in the living room LOL I feel like the "Dork Exhibit" as whenever anyone comes to the door, I'm there, in the living room on my bed. Gotta laugh at life and I'm grateful to have my bed! It's an expensive adjustable bed and I was very lucky that the water didn't ruin the motor... or vibrator unit... gee whiz... you know, I have my priorities. *snicker*
Ohhh.... gee whiz... I forgot to mention the good old gee whiz... it made it through the flood! As well as all my other novelties and fun stuff. I was lucky enough to have Susie go through my closet and she is keeping the *fun things* at her house for the time being. Ah, gee whiz, I've got a good sister... ;-) No worries about her kiping it though, cuz she has one of her own. ROFL TMI? Yeah, probably...
Speaking of vibrating, I need to get a new recliner, darn it... perhaps I can get a vibrating chair. Woohoo *snortle*
I'm taking over my dad's big oak desk since my desk was ruined and I'll hook my PC up in the TV/lounging area so I'll have oodles of room in my bedroom for a change. I guess that's one good thing about a flood, it forces one to go through the old stuff I haven't used in months/years/decades.
Today, J Dee and Mom need me to go through my clothes that go into my closet so J Dee can finish the walls in the washroom, where my clothes are hanging now. I'm sure Mom is elated that I'm forced to get rid of some of my things... being the little packrat I've always been. I'm not a hoarder though, I swear LOL I see some of those people on TV and it's so sad that they feel they have to live like that. Anyhoo... off topic a bit. Once I go through my clothes, I'll give some away and then split my summer/fall/winter stuff out for the extra wardrobe (that luckily survived) in the storage room.
Mom has been after me for years to do some MAJOR cleaning out. I just went through pile one and only got rid of two things (out of 20). Hmmm, not looking so good... LOL I bet I'm going to find some clothes missing before I put my room back together. Mom is sneaky that way, especially since I'm connected to my oxygen machine while I'm living upstairs and don't venture downstairs that often. Yep, me thinks she'll donate them to a charity on my behalf. LOL
Elyssa is back in school and doing really well so far. She's grown a lot again this past summer, especially her feet going from size 1 1/2 to 3!! We had to buy new tap shoes and ballet shoes for her dance class, not to mention all the new shoes for school. She's a shoe girl as far as showing them off but as soon as she gets home, it's off with the shoes.
Well, I better go downstairs for a bit and go through clothes before it's done for me ;-).
TTFN! (Ta Ta For Now)
Every year, the Ogden City Pioneer Days Rodeo Association (or some name like that) puts on a rodeo for special needs kids. Elyssa goes every year and has so much fun every time. She was so excited today to go and see the horses and get her face painted, and have some fun with other kids. She was looking forward to seeing some of her classmates because she misses them.
I was excited to take her because we had so much fun last year and my sister Susie came with us and was coming again this year. I drove my car, Elyssa was in the back in her car seat then we stopped and picked up Susie. E was SO excited and was saying Cookoo, Cookoo all the way (10 minute drive). Then she told Susie (in her own little way) how her day was and what toys she had with her, etc.
It was about another 10 minutes to the park and we parked in a good place and followed a paved sidewalk (asphalt) and were right where the welcoming people were. It was quite a walk for me but I was going slow and steady but it upset Elyssa because I told them to go ahead and register and that I'd meet up with them in the line. She wasn't having any of that. She kept turning around and making sure I was behind her - probably about 15 paces - and she appeared to be OK to do that but she kept stopping every so often to wait for me to catch up.
Next thing I knew it, I saw a giant Hershey Chocolate Bar character coming towards Elyssa and Susie was saying, "Oh look, Elyssa..." but Elyssa FREAKED OUT. I have NEVER EVER seen her freak like she did. She wanted NOTHING to do with the Hershey bar and the person inside kept coming towards her saying hello, type thing - you know, to calm her down but E wanted nothing to do with it and she broke away from Susie, turned around and came towards me, in rodeo fashion, like a bull and I was the clown in the barrel. She picked up speed in the 15 paces and although I saw her coming and tried to prepare myself as a clown would with a raging bull coming after him/her. By the time she reached me, she hit me with so much force, she knocked me down on my butt then I hit my back/shoulder and then the back of my head hit last (thank goodness or I would have gotten another ride to the hospital). She knocked the breath out of me and the next think I knew, she was on top of me screaming and crying.
Poor kid. I couldn't even sit up and no one would let me so Susie took Elyssa and tried to calm her.
Me? I was surrounded by several sexy cowboys checking my head and asking to look them in the eyes... Dang, I forgot to get some phone numbers... hmmm... well maybe not - wasn't my finest hour. ;-)
Then they asked me questions as tears rolled down my cheeks because I wanted to get to Elyssa to check on her but Susie had her so they then I didn't know whether I was crying more from my own injuries or for Elyssa. I tried to explain about E's irrational fears but I had NO idea she would be scared from a giant Hershey Bar (who would see that coming?!)
After they got me sitting up and then onto a chair to make sure I was all right, Susie took Elyssa back to the car because she wanted to go HOME. No doubt about that! But she didn't want to leave me either so it wasn't all that easy on Susie getting her to go back to the car.
As I was discussing what happened with the group that gathered, I had an idea of why she flipped out and that was her "so-called-father" because he is very dark and and she is afraid of him. Then I looked back behind me and I saw the one poor Hershey Bar guy standing in a corner and soon another Hershey guy joined him and their poor little legs were just shaking.
Then they people knew I was OK when I started speculating what their conversation might be (or they thought I was nuts).
"Oh man, what did you do to that little girl?! We're supposed to make the kids laugh, not cry, dude!!"
"I just said hello! I swear!!! The kid just freaked and then she tackled that other lady wearing the oxygen."
"We're so fired, dude!"
"Oh, wait dude, I got a plan. We just won't say who was there. I got your back if you got mine."
"Cool." but thinking... "I ain't taking the fall for ya... "
We all had some chuckles at that. The really cute cowboy said, "Yeah, OK... now we know you are just fine with that sense of humor."
Susie drove the car on the pavement to come get me and while I was waiting, a lady stood there with two of her kids. She had been right there when Elyssa freaked and never thought of leaving until I was safely on my way home. She had a special needs little girl and a son (who ran to get water, etc) and I thanked her so much as we left and that I wished we didn't spoil their night. She just said, knowing you're fine is all we care about.
More tears poured down my cheeks as I mouthed "Thank you" from my car as Susie turned the car around. Everyone was really nice and they all said to take my time and not go anywhere until I was ready. It was just an awesome experience (not the tackle part) knowing that so many people just dropped what they were doing and came over to help.
I sat in the back of my car with Elyssa to make sure she was OK and Susie drove us home. Thank heavens she was there with me.
The wounds are as follows:
Elyssa landed on me but she scraped her knee on the pavement so she's OK, other than being shaken up.
Me: well, a few more injuries but nothing a few days won't fix.
Bum: sore but luckily is padded... bruises starting and more to follow
Right hip: ouch.
Right Shoulder blade: road rash and bruised all over my upper back
Top of back of head: little bump but pupils are equal and reactive.
Over all body: I feel as if I've been hit by a dump truck and actually, I have!
Diagnosis: I will live. ;-)
Susie and her friend Robin were planning on taking Elyssa to the real rodeo next week but ummm.... don't' think that's gonna happen, even if we promise her there's not going to be giant Hershey Bars running around. Maybe next year...
Neglecting my blog again. I've had a lot happen the past six weeks or so but it seems to never be on the top priority to write about it on my blog. I used to blog at the drop of a hat and now it seems as if the hat has to drop off a cliff before I'll write about it! Now worries though, nothing that catostrophic happened! ;-)
I'm getting used to my medication for the pulmonary hypertension (PH) and I still wasn't feeling well and I was having trouble with my oxygen saturation not being in the 90's, it was in the 70-80's, which isn't good enough. My doctor gave me the news (which I already suspected) that I've got some lung damage from the root cause of the PH and everything that's gone on the past year, the Rheumatoid Arthritis (RA).
It's really true, just like the cereal Kix isn't just for kids any more, RA just isn't for joints any more. GAH. So, I get to be on oxygen 24 hours a day now, instead of just at night. For night as well as when I'm in my basement, I have a big unit that I call B.J. (you can guess what the initials stand for... hey - come on... I gotta keep my sense of humor, right?!) then while I'm upstairs and go anywhere, I have a portable unit that I call Breezy. It's a bit of a pain to drag around but at least I don't have to drag BJ around ;-)
The summer has been pretty busy and Elyssa is keeping me and my mom going. We have her in gymnastics twice a week and she's having fun. She still misses dance but those classes don't run in the summer. She's got her imagination now so she'll pretend to go to the store or wherever she decides to go... however, she's not gone long enough LOL she'll turn around and come back home. I told her she should take her time while shopping but she's too excited to get back to show us all the babies and treats she bought for me, Mom, and Dad. She's so funny and her sense of humor keeps growing.
I spend a lot of time in my recliner but that's not a good idea because I noticed I've developed a bed sore! Not sure how... really... other than it's right where my undies hit at the bottom of my booty and top of my thigh. Good place, huh? So the past couple of days, I've been on my bed, giving my arse a rest and of course, Elyssa has been with me. She doesn't want to play on the floor but insists on playing on my bed with me. She's quite the bouncy bedmate; kind of like Tigger would be, I imagine. At least she has her own bed for the night time so I can enjoy the magic fingers of my massaging bed.
I have enjoyed getting outside a bit to take some photos of Mom's flowers and some of my rose and lily bushes. Fortunately, Ashley's red rose and peace rose made the winter. One little branch of the purple rose (give to us by Dawn) made it, as well as a small white one. We thought they were all dead in the spring but decided to see what they'd do in the heat and they came back! The lilies are really beautiful and I'm excited about those. So, I'll leave you with these photos... take care and stay cool!!
In replying to a friend's email this evening, answering the question how Elyssa is doing, I realized that I have gotten out of the habit of writing about the "Little Things" that aren't so little.
Yesterday afternoon, I was outside taking photos of the beautiful spring flowers while Elyssa was playing on the lawn. I was in my own little world (while listening to Elyssa giggle and play) when my neighbor from across the street came over and asked me about the lens I was using to shoot the flowers. Just a little small talk, which he likes to do on occasion. He's a great man who is very intelligent and has many hobbies, and photography is one of them.
After chatting with him for a few minutes, I saw the dark circles under his eyes and asked him how he and his wife were doing. "Not well at all," he replied. Then he went on to tell me that his sister is on life support after an infection that started out from strep throat. She took the very strong antibiotics for the strep throat and the antibiotics removed all the natural flora in her body, especially her intestines and uterus, etc. That turned into a bad yeast infection and the first thing they knew it, she was hospitalized and they had to put her on life support.
They took his sister off life support this afternoon.
But while we were still talking yesterday, after he told me the story about his sister and I told him how sorry I was, I could tell he had the weight of the world on his shoulders. That is when he saw Elyssa running towards me saying, "Dude! Dude!" as if she'd won the lottery. She reached me and she must beamed when she showed me the hand full of grass she'd pulled from the lawn and then she threw it in the air and got it all over us.
We laughed and giggled and I hugged her and thanked her. Then my neighbor, with eyes filled with tears, asked me, "Do you know how blessed you are to have such a wonderful child in your life?" He was grinning from ear to ear as I was I and I found my eyes filling with tears and I answered, "Oh yes, I do."
He knew that I understood exactly what he meant as I saw him smile and look into Elyssa's smiling face and the weight on his shoulders seemed to disappear before my eyes. Then we went on to discuss what an incredible child Elyssa is.
She may not talk like everyone else but just one look into her eyes and to really see the expressions on her face, you know exactly what she's thinking.
Elyssa began to play "peek" with my neighbor running around me then he'd try to grab her and she'd run around the back of me and gave me a big squeeze as if I was protecting her. She loves to play that game.
My neighbor excused himself and returned home and a few minutes later, I noticed he was still playing peek with her. She was squealing and running around, and almost knocking me over like a locomotive as he hid behind his trees and she'd hid behind me.
You see, it really takes so little to take away the very largest of problems.... just a little love is HUGE.
I just realized that (well, OK so I've known about it for a while LOL) I'm slipping. Here it is, almost 10pm on April Fool's Day and I haven't played a practical joke all day! There was a time when all I had to do is smile on April Fool's Day and people around me were stricken with panic, thinking I'd done something. Oh yes, those were the days... let's hope for a better day next year!
It's really been that long since I wrote here? Sheesh, what is my problem? Well, actually, I do have several, however, but I try not to dwell too much. Lately, it's been rough though. Fatigue is so severe as well as the pain, it's difficult to function at all. I push through a lot of it because I have Elyssa to care for as well as Mom needing my help with Dad.
I finally got to see the specific specialist (Pulmonologist) who I needed to see and he diagnosed me with Pulmonary Hypertension and we're working on finding out what is causing it. It could be a number of things, but he narrowed it down to Rheumatoid Lung, Lupus, or Scleroderma (which all make sense since they're auto-immune diseases and I already have several).
I went in for a heart cath yesterday to check the pressures in my heart chambers and lungs. The pressures are all really high, however, the good news is, I responded to the medication within 30 seconds. This tells the doctor that I will respond well to medication therapy and it will be relatively easy to treat. Fingers crossed! Usually, with me, if something weird is going to happen, it will happen to me (LOL) I'm just weird that way! ;-)
It was a really good day today; my dear friend Teresa visited from Indiana and it was SO awesome to meet her in person. I took Elyssa out of school so she could join us for lunch and we three had a great time. Teresa is just as - or more- wonderful than she is on her blog. I can't wait to see her again when she flies here again.
Elyssa met a milestone at school today too. Using her SpringBoard device (like a computer that helps her communicate by pressing buttons with pictures), she composed a complete sentence! I am still beaming with pride because she's worked hard for the past two years to do reach this goal. I'm so proud of her; she's such an incredible treasure and I'm so grateful to have her in my life.
Another fantastic thing happened this evening to my dad. My brother Bob and his wife Joan came over to till the garden and plant some peas for my parents. Bob brought his running boards for the tiller to be taken out and put back in his truck and he got the bright idea to put them on the front stairs of the house and he and Joan were able to get my dad out of the house for the first time in over 9 months!! We haven't been able to get him out of the house since he's been wheelchair-bound so he was SO happy to be outside and to smell the fresh air and feel the sunshine on his face. Such a little thing we take for granted was huge to my dad.
I'm so grateful for my family and my friends; I don't know what I'd do without any of them (yes, you too) because my life is so rich and I'm so blessed.
I haven't been able to take many photos, which bums me out, especially because I bought a new macro lens (80mm) and it's lovely! Here is one I took of an amarilys back in January. I forgot I had them on my camera! The spring flowers are blooming so I need to get outside sometime, hopefully this weekend. I'm just itching to get out and hopefully my body will cooperate.
Have a wonderful weekend!
OK, am a bad blogger. I just got a comment from Tina (hi Tina!) and she wondered if I've posted lately. Um... quite ashamed because I haven't. I've been really busy, both good and bad. I really shouldn't ignore my blog because I really do enjoy writing here. I'm not really ignoring it... it just comes in last as far as priorities.
There is a lot of news, the most newsworthy is that when I went to see my Rhuemologist, he discovered a bad systolic murmur in my heart. I had to have an echo cardiogram a few days later and that showed some problems with regurgitation in my tricuspid valve (one of the smaller valves, which deals with the lung blood supply). It's called RSVP and it deals with pulmonary hypertension, which makes blood regurgitate out of my valve. There is too much pressure so blood is leaking. There's a reading (can't remember what it's called) that is 63 but it's only supposed to be 10 so it's quite high.
We were hoping it was caused by blood clots since I have a history of them but unfortunately, that's not the cause. So, I'm waiting to get in to see the cardiologist/pulmonologist who is the best in the area regarding RSVP in women my age.
HERE is an article that explains some of what is going on but we're not sure of the actual cause yet. Not sure what other tests will have to be done but I'll find that out when I see the specialist.
I see the doc on March 29 if not before (on a cancellation list) and I'm hoping before.
In the mean time, I can't get any RA treatments so my joints are hurting REALLY bad and very swollen. Quite attractive... I also have elephant legs due to swelling, which is another symptom of RSVP and other causes from previous issues. Who knew that all this crap can happen just from RA?! It's a joint disease for hell's sake... well, that's what we thought anyway.
Back in August when I was in the hospital for the Pleural and Pulmonary Effusions (fluid around my lungs and heart) were caused by RA. As my doc and I always joke about (better than crying), if something weird is going to happen, it's going to happen to me. So, I've got that going for me ;-)
I really am trying to keep a good attitude and I'm certainly not as weepy as I was after finding out there is something wrong. Let's say I'm off my pity pot right now ;-) I am scared but I also know I'm in good hands and there is NO WAY I'm done with this life. I have Elyssa to raise and I still have a lot of living to do. So there.
Speaking of Elyssa... she's doing great. Tomorrow, we start some swimming lessons for special needs kids and their parents. It runs every Saturday for a month so it should be a lot of fun. She's still loving gymnastics and dance lessons too. Let's not forget school; she LOOOOVES school. Next week is Literacy week at school and they're having a magician come in to do a show. I invited my sis Susie along because they'll also do an open house and Susie has never met Elyssa's teachers or seen her classroom so Elyssa is really excited for "CooCoo" to come. Yes, she calls her "CooCoo" it used to be just "Coo" but I taught E to add the other "Coo." *snortle* Yes, I'm evil. LOL
Dad is still holding his own; we still have hospice in twice a day and one of my brothers come in every night to put him to bed. He has some clarity some days and it's wonderful to see "Dad" break through. However, it's getting less and less so we're really grateful when he comes through. We keep him laughing as we can because his sense of humor keeps him going - along with our love, of course. His love definitely keeps us going too.
The past 15 months or so have brought about many changes in my life. The shift is mostly due to my health and what I can no longer do and the changes that having Elyssa here full time (and of course the loss of my sister). I don't have the disposable time I used to have and blogging and reading blogs seems to be at the chopping block.
I miss reading blogs and keeping in touch with all of you more often. Facebook has helped somewhat; but those of you who aren't on FB or on my friends list (if you're not on my list of friends, please let me know!). I read several blogs through my RSS feed reader but unfortunately, it's rare and I don't always leave comments. I honestly don't have time to sit in front of my computer any more and also, being on the computer for any more than a few minutes at a time bothers my hands, wrists, elbows, and shoulders.
I've kept in touch via email with several of you, but I still I feel out of touch with the rest of you and I wish I had an answer to bring about more balance in my life. I don't want to lose friendships because I'm "too busy" or "don't sit at my computer." I now have an android phone and it's easier for me to email and check on those of you who are friends on Facebook.
Elyssa is a big reason I can't sit at the computer too because she demands my attention, which is a priority. She is a priority. Not only because I love her but because she has special needs to be addressed. She loves seeing the photos I take of her AND loves her photo to be taken... at least she used to like it when I took her photo but now it's all about wanting Darlene to take her photo (yes, Darlene, she still asks for you to take her photo, she had so much fun that night!).
There's also a lot of time when we're not around the computer at all. Last night for instance, we had some major cuddle time in my recliner. First she ate some snacks sitting on my lap then she wanted me to tickle her back, then tickle her belly, then her arms, and then legs. The tickling relaxes her and reminds her of Kathy so it's something that is a must. She was supposed to go to dance class last night but it didn't work out that way; as much as she loves dance, the quality time with her was more important.
She is out of school today through Monday so there will be lots of time for cuddling and I find myself smiling and looking forward to it. She's such a special spirit and I think the cuddling does as much for me as it does for her. I have several new movies I bought for us to watch so there will be plenty of entertainment. There will be trips to the store as well, to get little prizes for being a good girl (as if she needs more toys!!) and staying dry. She's finally ready for potty training and so far, she's done really well. YAY!!!
The other part of my time goes to helping out with Dad. He's in the end stages of Parkinson's and every day is an adventure; we never know how he's going to be when he wakes up. Hospice comes in twice a day and they're such a huge help as well as a nurse as we need her. He stays pretty stable as far as his vitals but there are days when his muscles don't communicate with his brain. He's alert enough some days to know what's going on but he can't communicate it to us. He cries. We cry. But we still find things to laugh about, which is good for him. In the face of this horrible disease, he continues to keep a positive attitude and continues to try to stand up (although wheelchair bound) for exercise. He's still strong, it's just the communication process isn't working all the time and that really frustrates him.
Mom's health is better since she received the pacemaker in December; she doesn't have the dizzy spells like she did and she's regained a lot of strength. She's incredible; she's our rock and I honestly don't know what my family will do without her when we lose her. She's our super glue.
My brothers and their wives as well as my sister Susie are wonderful as well. They come over often to do anything we need them to. Since Hospice comes during the day, my brothers come at night to put Dad to bed and settled for the night.
We have incredible neighbors and friends who help in any way they can; they often bring in dinner, which helps so much. Their visits really perk my parents up as well as Elyssa, she loves the extra attention. We have a lot of family near by; mostly my nieces and nephews who are all grown and on their own. Elyssa and my niece Morgan are the only ones left in school, and Morgan only has one more year after this one. Yikes, I feel old!
It's crazy how so many changes sneak up on us; or maybe not so much sneaking up on us but just slow enough that we don't realize we have changes happening in front of our faces. I blink and miss so much. I need to slow things down a bit and sit back and watch.
Enough rambling... I hear Elyssa so I better get moving... have a great weekend everyone! And remember to let me know if we need to connect on Facebook! I appreciate your friendships and support; you all are incredible and I'm so blessed to have you as friends.
From our family to yours... may your family be blessed with love and happiness throughout the holiday season and in the New Year and beyond.
I'm grateful for all the blessings I've received this year, as it comes to a close, I realize despite all the difficult times, many blessings came along for the ride.
I owe a BIG thank you to Darlene Monson, a dear friend and photographer for taking Elyssa and my photographs and incorporating a favorite photo of Kathy and Elyssa together. These are priceless to me and my family and will be for generations to come.
Merry Christmas everyone... and may we all have peace and love in our hearts.
I honestly don't know where my days go; I blink and I miss them. However, I know I do something because at the end of the day I'm so tired, I can barely think, yet here I am, writing a post. This should be good... or totally suck. Let's see.
Thanksgiving last year was awful last year, it was the day my sister Kathy passed away unexpectedly. No real known cause, we think an abscess from two teeth went straight into her blood stream and then hit her heart. We found out exactly what happened through a psychic (believe what you will, she had no way of knowing because we didn't give her details of how Kathy was found). Kathy felt nauseous and got up from her bed to go to the bathroom but she was hit with a dizzy spell that felt like vertigo when she tried to go back and reach here bed, she fell and was dead that quick. She hit her head on the bottom bed rail on her way down but she was dead that fast so she never felt it.
Her little girl, Elyssa, (who you know I have custody of) was on the bed playing and she saw Kathy fall. All she told us was, "uh oh, momma," meaning Kathy fell.
We tried to keep it positive this year and keep "Thanksgiving" as just that and the anniversary of her death is on November 26. I tried my best to be strong for Elyssa and my parents knowing Thanksgiving was still going to be rough. The Wednesday before Thanksgiving and Thanksgiving, Elyssa was very weepy. She definitely knew it was the day Kathy died just a year before. The first thing she said to me on Thanksgiving was, "uh oh, momma." Talk about a way to start the day. I stayed strong and held her as she cried while somehow keeping my tears just on the verge of falling. I don't know how I did it but I actually felt at peace at the end of the day - more than I'd felt in a long time.
Friday wasn't the best because I was ill and I knew it was the stress from the day before coming out physically. By that afternoon, I felt better and was able to drive Mom to the cemetery where we cleaned snow off of Kathy's bench/marker and placed two solar lights in the ground. It was a solem time at first and Mom and I barely said a word then as we stood there in the cold, I asked, "Why was she taken?" Of course, that set off the waterworks for both of us.
Then we hurried and got in the car because we were freezing standing there in the bitter cold and snow. I started to giggle. Not about Kathy being gone but because of the nit wits who placed her bench screwed up again.
The bench was ordered in the summer and placed. Half of the bench has Elyssa's name on it so they'll share a nice place to rest next to one another (well, you know what I mean, I know they aren't THERE but it's symbolic). However, instead of Kathy's name being over her plot, it's over Elyssa's empty plot and Elyssa's name is over Kathy's grave. Then I noticed they didn't give us the granite base we ordered and paid for so they were happy to get my call to come out and fix it.
While at the cemetery, we noticed the nice granite base and how beautiful it was, however, the bench is STILL placed wrong. I mean, seriously. Doesn't one have to READ to be employed there?! I knew it wasn't going to do any good to be upset over it and so I chose to giggle about it. Oh, to imagine how happy the business was going to be to hear from me again... happy as shit, probably. So Mom and I had a good chuckle over it and we knew that Kathy would find it amusing and who knows, perhaps she is haunting the twit who screwed up again.
The call was interesting... the secretary actually said, "I don't know why it wasn't done, perhaps the cemetery wouldn't let us fix that part." SERIOUSLY?! She's going to blame the cemetery?! Ummm. Right. They wouldn't let them correct a mistake such as THAT. I pretty much told her to give me a break and that I didn't really care why it wasn't done before but I want it done now. I was even nice enough to give them until the weather is better if the materials work better in the warmer weather because I want something that lasts, which is why we bought a granite base in the first place. Sheesh. She said she'd have the granite guy call me the next day but big surprise here, he didn't call then or since then.
OK, enough about that.
Last week, Mom had a pacemaker placed to help give her some energy and keep her heart pumping as it should. They had to keep her overnight since she had her aorta valve replaced in February. It's so amazing what they can do. So, it's been really crazy at my house! Between getting Mom to the hospital, having someone there with her, getting her home the next day, caring for her, and caring for Dad and Elyssa the whole time, I'm beat.
I am so not alone though, my two brothers, their wives, and my sister Susie have all chipped in and been such a huge help. Let's not forget the hospice staff who have come in twice a day to help us with Dad (bathing, general care, etc.). Elyssa has been good through all of it, although she was really worried about "Dee Dee" (what she calls Mom). She has been in school most the time (except the weekend), thank heavens!!
The procedure went really good and Mom is doing well. It's difficult keeping her from misbehaving; the woman cannot sit still and always has to be busy doing something. Although, she's over done things a bit from time to time and learns a lesson... just to turn around and have to learn the lesson again. I can't judge her though because I'm a lot like her LOL They say we turn into our parents and they're not kidding. It's really good to be like her, actually, but some things I think are down right scary.
So, that's pretty much where I've been for the last couple of weeks. Before then, I think I was in a slump and didn't feel much like writing. I'd post from time to time on Facebook but that's about it. I shouldn't neglect my blog though, shame on me. I'll try to do better... especially since the new year is approximately 25 days away... wow. Where did 2010 go?
P.S. About the first paragraph when I mentioned being tired at the end of the day, I don't know how I know the difference between the end of the day and the beginning of the day because I'm tired all the time LOL Fatigue sucks. Pain sucks. Some days being me can suck but keeping a good attitude makes things easier and life more entertaining. Just like today.
I went to Wal-Mart to get some prescriptions filled after seeing my pain doctor. Everyone knows that Wal-Mart is the best place for free entertainment (that is if you don't buy anything) and I was not let down today. I took my book in the store but that was silly of me because I didn't need entertainment, it was right in front of me. OK, so waste of a few energy points, carrying a paper back book, big woop.
As I sat on their very UNCOMFORTABLE benches, after doing a bit of "stocking stuffer shopping," I kept hearing whistling. It irritated me to the core. Then every time I looked up from my phone (got a new toy - love my new phone), the whistling would stop. I looked around several times and could never pick out who it was. GAH, it drove me nuts! Pretty soon, this old scruffy looking guy comes around the corner where the Preperation-H and other hemorrhoid creams are shelved (should have gotten a clue the trouble was there) with a dumb-ass look on his face.
He stood about 8 feet from me where he confessed he "saw me from afar" and decided to "woo me with his favorite past time." Good Lord. Yes, I live in Utah.
Fortunately, all I had to do was flash him (get your mind out of the gutter - I'm not that hard up!!) the dirtiest (OK, seriously, enough with the gutter thoughts) look I could muster and as I stared him down, he looked as if he'd been shot at and he scattered into the depths of the undergarments isle.
Kathy - only gone one year,
But seems like a lifetime,
And is more than we want to bear,
Though we are happy you are free of pain.
The Legacy you left behind,
Is so sweet and full of love and laughter,
She reminds us of you all the time,
You would be so proud of your special daughter.
We love you and miss you every day.
All our love, Your Family
I won the fight of Round 2 for the Social Security disability and have officially received my certificate of award. Now I'm waiting to find out how CIGNA and SS wil work together and all that fun stuff. My head feels as if it's swimming some days; it all can be so confusing. Anyway - good news and I'm so grateful.
I haven't felt much like writing - not sure why... perhaps it's the change of seasons. I love fall but haven't been able to get out to take any photos so I'm probably a bit depressed. No worries, just a slump, I think.
I've been helping a lot more with Dad since he's now in the end stages of Parkinson's and Mom needs a lot more help even having Hospice and Senior Services come in. Elyssa is doing well though and is loving school, dance, and playing with all her toys. I'm going to start taking her to gymnastics again starting Monday; I had to stop for a couple of months because things were so crazy with Dad.
That's about all... I hope everyone is doing well!
It's almost official, I won my war and got my long term disability! I'm just waiting for my "certificate of award" from both my company and Social Security. I got my monetary settlements (hooray) but most of it is going to my parents for all the financial support they gave me while I didn't have any salary coming in as well as their never ending support in my battle against my poor health. They're such incredible people and I can't say enough how much I appreciate and love them.
I recently had a stay in the hospital due to a complication of Rheumatoid Arthritis; I had pleural and pericardial effusions, which translate to fluid around my lungs and heart. I thought I had the flu and my breathing kept getting worse. On Friday, Aug 20, my mom and my friend Dawn talked me into going to the local "insta-care," my oxygen stats were at 70% (anything under 90 is not good), I had lots of crackles in my lungs, weird sounds coming from my heart, and I had a fever of 102F.
These symptoms bought me a ride in an ambulance to the hospital. It was my first ride and I didn't want to admit it but I was scared shitless. My sister followed me up to the hospital after she stopped at home and broke the news to Mom and Dad.
Susie sat through CTs, x-rays, and blood tests then hen later on, my brother J Dee and SIL Patti came to relieve Susie and they got to watch my heart on the ultrasound machine and they wouldn't leave until I was settled in my room. which was about 1am.
During the admitting process, the resident examining my heart all of the sudden said, "Woah... your heart sounds so awesome, I need to go get my boss." I wasn't sure whether to be more scared or laugh and how psyched he was. Pretty soon his boss came in and explained that it's very rare to get to actually hear the sound the heart makes when there is fluid around it. So, I had two docs sitting in my room, discussing my health history and being in awe of my heart sounds at 3am. They weren't too concerned about me getting some sleep or anything, which made me giggle.
Over the next few days, I had 400ml of fluid removed from around my right lung (which felt like I'd lost 20 lbs off my chest), lots of x-rays, lots of EKGs, lots of ultrasounds, lots of poking and prodding, lots of lasix (which caused lots of peeing... probably lost 40 lbs!), lots of "can I take some blood?" etc. I even had another resident come in and ask if he could listen to my heart. I felt like a circus side show but that was OK, it was furthering their education.
They decided after a few days that their treatment of lasix and prednisone was working so they finally let me go home. Through the whole time, I tried to keep my spirits up so no one would really know how scared I was.
I updated Facebook as I had something to say but again, didn't let on how serious this all was. I can do that here; this is my place. Too many family members read my Facebook and I just can't get myself to admit there how scared I was/am.
It all hit me today as I listened to my mom speaking to an old friend on the phone and telling her all about my hospital stay. When Mom said the words, "It was all unfolding that I could lose Karen just like I did Kathy." My heart sank. I held it together long enough to go into the bathroom where I lost it. Tears rolling down my cheeks (and again now) and I finally feel as if I'm letting it all go now. I can focus on healing and making sure I don't ignore any signs of more fluid building up. I have too many people depending on me and if I'm no good then what?
I can't let that precious little girl Elyssa lose me as she did her momma. I still have work to do and I'm not ready to leave yet. Elyssa won't let me out of her sight so I know she knows how serious it all was - there's no fooling her.
I'm really OK... I just needed to vent and "let it go" where and to who I feel I always can.
She did it. She skinned the cat. Well, not an actual cat but she did something she's worked all summer doing and it is called "Skinning the Cat" in "Gymnasticese." She has struggled with these bars from day one, first thing that made her cry and she cried during the bar sessions every day for a month until she built her muscles up so she was strong enough to hold herself on the bar. The lovely teacher, Lori, is incredible and she kept working with the tears and not letting Elyssa give up.
My eyes welled up with tears - and still do - when I see how much progress she's made.
This photo only needs one word to describe it: Determination. Pure Determination.
Gee Whiz. I am one proud Aunt Momma or "Dude" as she calls me.
It was almost bye bye to me yesterday while getting my 88th Remicade treatment. It started by losing my insurance and didn't get a treatment for 5 months then I filed for financial assistance and the wonderful company Johnson & Johnson paid for the Remicade (which is $17,00 per treatment - yes, you read that right). I appreciate what they did for me.
I started the treatments again in May and everything was fine but June's appt not so good. I had an allergic reaction. They said this is common after missing so many treatments and it usually happens on the second treatment. They pre-medicated me with Zyrtec and Solumederol (sp?) and I still had the reaction and could barely gasp out "HELP" and it happened in an instant. They gave me Oxygen and a mega dose of Benedryl and it brought me back.
It usually doesn't happen twice, but yesterday was another story. We still premedicated but I had another reaction and it was bad. It was mostly repository and pain shot down my lower back and in my chest and I almost passed out. After about an hour, they finally got me stabilized to the point where we decided to finish the treatment hoping it was over. Nope. In about 15 minutes after the IV started again, I started breaking out in hives and rashes all over.
I was really blessed because just as it was all starting, my doc walked in to examine me so he and the nurses saved my life.
Since I got the hives, it's a definite allergic reaction and not just a reaction. Now we're doing research to see what medication is next. One really good thing about Remicade is that it was good for my Rheumatoid Arthritis as well and the Ulcerative Colitis and Chron's Disease and there is not another one on the market approved for all.
I have an appt with the doc next week to sit down and talk about the options but it sounds like they're going to put me on Rituxan and we're submitting the paperwork for financial aid with them. I have to wait another 4 to 6 weeks to start another medication (to make sure Remicade is out of my system) so that should be about right if I'm approved.
Any way - very scary day but I was in good hands.
Today I'm still feeling like poo and I don't know whether to call me Itchy or Scratchy ;-) I'll live.... Benedryl is my best friend right now.