One of my best friend's son's ball tourney was at Orleans Saturday. My other best friend is now off on weekends and out of nursing school. Prime way to get together, cheer the boys on and have fun. Loaded up and headed out to Orleans for alot of fun. HOT and sunny but fun.
Kaya loved cheering from the sidelines. Her best cheer "Believe in yourself blue team YOU CAN DO IT" :) She loves my friend's kids even though they are 20,soon to be 18, 13 and she's 5 lol They started their families a bit earlier than me ;) But they all have fun together.
Kaya treated C to a slim jim and swears that is what helped them win the tourney lol They of course had to hug at the end of the game and she oohed and ahhhd over his trophy.
Love our time together. We've all 3 been best friends for almost 28 yrs!!! and I can't think of one thing I'd ever change..other than having more time together. I'm fiercely proud of the two of them and I couldn't ask for better Aunties for Kaya.
Steve managed to sun burn his head..and his knees. The angle he sat in his chair his knees got roasted!!! Other than that it was a great time.
Kaya Rain
Our beautiful daughter.
Sunday, July 21, 2013
Drs appointment was a success
Alot of anxiety and worry about the drs appointment that was Friday. Worked a straight shift with no lunch so I could get off to go with Steve.
For once the drs appointment turned out to be great! Dr B said that Steve had perfect blood pressure, has lost weight, has only 20 lbs to go to his target weight he wants and the dr agrees with, his neck cord lesion stayed the same, no new lesions and his MRI actually looked clearer this time than it did last year :) :) That means he's not had a relapse yet, that his body is fighting it, that his shots are doing something,and even though there is NO guidebook for MS what we are doing may be helping. Dr B praised him for eating very few processed foods, for eating fresh meat instead of large amounts of store bought, and that she honestly couldn't tell him anything to change or to work on because he was on the right path. To watch his headaches and leg cramps if they increase, to remember to stay hydrated and to rest when needed in the heat.
I know we looked like smiling idiots coming out of the room and down the hall lol but..it's great news. Steve's horribly tired spells early this summer was probably from overdoing it in the heat..a big NoNO with MS and not a start to a relapse. A relapse is when the body eats the melanin and destroys the nerve...you will see extreme tiredness, possible loss of use of something (voice, speech,eye sight, limbs etc). So we know that when he starts feeling that tired what it could be and it worries us. Just glad this time it was too much work in too warm weather.
Kaya had promised her Daddy a special candlelight supper if his appointment went well. So she got to keep her promise. Even though she decided it was going to be candlelight dessert lol She made him a beautiful homemade lemon meringue pie and we ate it by candlelight after supper. She managed to strike me nearly speechless when she asked Uncle J to turn on the music and make it the Hanukkah song. Asked her why. "That song is about miracles and light. We are having both" :) She humbles my heart, opens my eyes and gives me fresh perspective on so many things.
Sooo no appointment for six months and we'll take it from there. :)
Also on a good note..we were accepted into the shot program for another year :) We have to be interviewed every year to stay in it. Our insurance hadn't changed significantly etc and his med price actually went up a bit. The guy called Thursday night and told us we were going to be allowed into it another year at the same price :) BIG relief. After insurance and without the drug company co pay program Steve's needles would be almost 3000 dollars for 12 needles..3 mo worth.
For once the drs appointment turned out to be great! Dr B said that Steve had perfect blood pressure, has lost weight, has only 20 lbs to go to his target weight he wants and the dr agrees with, his neck cord lesion stayed the same, no new lesions and his MRI actually looked clearer this time than it did last year :) :) That means he's not had a relapse yet, that his body is fighting it, that his shots are doing something,and even though there is NO guidebook for MS what we are doing may be helping. Dr B praised him for eating very few processed foods, for eating fresh meat instead of large amounts of store bought, and that she honestly couldn't tell him anything to change or to work on because he was on the right path. To watch his headaches and leg cramps if they increase, to remember to stay hydrated and to rest when needed in the heat.
I know we looked like smiling idiots coming out of the room and down the hall lol but..it's great news. Steve's horribly tired spells early this summer was probably from overdoing it in the heat..a big NoNO with MS and not a start to a relapse. A relapse is when the body eats the melanin and destroys the nerve...you will see extreme tiredness, possible loss of use of something (voice, speech,eye sight, limbs etc). So we know that when he starts feeling that tired what it could be and it worries us. Just glad this time it was too much work in too warm weather.
Kaya had promised her Daddy a special candlelight supper if his appointment went well. So she got to keep her promise. Even though she decided it was going to be candlelight dessert lol She made him a beautiful homemade lemon meringue pie and we ate it by candlelight after supper. She managed to strike me nearly speechless when she asked Uncle J to turn on the music and make it the Hanukkah song. Asked her why. "That song is about miracles and light. We are having both" :) She humbles my heart, opens my eyes and gives me fresh perspective on so many things.
Sooo no appointment for six months and we'll take it from there. :)
Also on a good note..we were accepted into the shot program for another year :) We have to be interviewed every year to stay in it. Our insurance hadn't changed significantly etc and his med price actually went up a bit. The guy called Thursday night and told us we were going to be allowed into it another year at the same price :) BIG relief. After insurance and without the drug company co pay program Steve's needles would be almost 3000 dollars for 12 needles..3 mo worth.
Wednesday, July 17, 2013
Ahh whatta week :)
And it's only Wednesday LOL Has been a week of duh moments, what was I thinking..what was they thinking, management taking my keys home at work, managing to head butt the pool ladder, some serious moments,the water office saying we can't get a discount like "in the city" people because we don't have city sewage (umm to fill the pool takes water..we are on city water...and draining it doesn't require being connected to city sewage....you don't drain the pool into sewage drains???). Chalked it up to our water bill is insanely low and we have septic so just rolling with it. Bit nuts to me..but..not worth arguing with them just to be told no because they "require you be hooked to city sewage to get a water discount" We are close enough to town for city water but they don't have city sewage out here. Whatever lol ....and as I said we are just on Wednesday lol
I think it's because my mind is floating elsewhere knowing we have that drs appointment of Steve's on Friday. Combined with the sweltering heat (91 degrees in the shade on the porch at 8pm!!), outside chores, Kaya wanting pool time (and me too lol), and just getting things done. I have been melting at work all day then outside a chunk of every evening doing things. But with all the rain we had been having combined with the heat/humidity now the garden has to be taken care of, weeds have to be pulled, watering has to be done. Yadda yadda yadda
Sooo thankful for this sweet face:
Our sweet pea, our giggly girl, our silly dreamer, our thoughtful thinker, our mermaid, our heart on two legs, our one act of perfection, our tomato addict....our life :)
She makes life fun, interesting and always makes me laugh and appreciate life..and the small things in it ;)
Sooo management found my keys, we've cooled off in the pool every evening this week, the garden is bountiful, our water bill is very small so filling the pool won't raise it a ton, our water bill is WAYYY cheaper than if we had city sewage anyway, I'm positive the apt on Friday will go great, we splurged and had the rare takeout this evening, I get to come home to air condition cool for a few before heading out side, I'm lucky to have a great hubby that works right beside me on things every single time he can, my head is wayyy harder than the pool ladder ;), I get sweet hugs and kisses the minute I hit the door every single evening, I am lucky to get 3 weekends off a month, I have a husband that thinks no matter what I'm the best thing since sliced bread ;)...life is good. Who am I to complain about the small insignificant things :)
I think it's because my mind is floating elsewhere knowing we have that drs appointment of Steve's on Friday. Combined with the sweltering heat (91 degrees in the shade on the porch at 8pm!!), outside chores, Kaya wanting pool time (and me too lol), and just getting things done. I have been melting at work all day then outside a chunk of every evening doing things. But with all the rain we had been having combined with the heat/humidity now the garden has to be taken care of, weeds have to be pulled, watering has to be done. Yadda yadda yadda
Sooo thankful for this sweet face:
Our sweet pea, our giggly girl, our silly dreamer, our thoughtful thinker, our mermaid, our heart on two legs, our one act of perfection, our tomato addict....our life :)
She makes life fun, interesting and always makes me laugh and appreciate life..and the small things in it ;)
Sooo management found my keys, we've cooled off in the pool every evening this week, the garden is bountiful, our water bill is very small so filling the pool won't raise it a ton, our water bill is WAYYY cheaper than if we had city sewage anyway, I'm positive the apt on Friday will go great, we splurged and had the rare takeout this evening, I get to come home to air condition cool for a few before heading out side, I'm lucky to have a great hubby that works right beside me on things every single time he can, my head is wayyy harder than the pool ladder ;), I get sweet hugs and kisses the minute I hit the door every single evening, I am lucky to get 3 weekends off a month, I have a husband that thinks no matter what I'm the best thing since sliced bread ;)...life is good. Who am I to complain about the small insignificant things :)
Sunday, July 14, 2013
To do List:
1.Count My Blessings: Easily the best and easiest chore to accomplish daily. I do pretty well at keeping negative at bay and to be honest..I have so many blessings that I often will forget the bad. I have a husband that is 100% devoted to me and Kaya and to raising our life and our standards every day and is my everything. I have a daughter that has taught me joy, patience, undying love, heartaches (at milestones and fleeting time), has taught me to slow down and think outside the box and has increased my determination on life. I have a Mom that..is a super mom and SUPER GRANDMA :) She is simply one of the finest women I know. Strong, smart, all heart and a parent first/friend second through every step of life. Her love has never wavered even for people that it should have. I have a Dad that has his faults but tries. He isn't the conventual Dad and there are things I wish I could change but..he's usually involved and has made improvements in his life. I have a little brother that is my twin lmbo born 27 mo apart ;), that is one great man and my pillar. I have many family and friends that complete the circle. I'm far richer than my bank account notes lol
2. Practice Kindness: Another easy one. I was raised to treat others how you want to be treated, to be respectful and remember that one day the shoe may be on the other foot. That Karma comes around and when it's your turn make sure it's going to be all good Karma. I try to listen to others, uplift people and help those in need. I also know that at times you have to stretch your hand out to enemies and take a chance.
3.Be Productive but Calm: I do pretty good. I have my days I feel like I'm running in circles, life wears me out and I could scream. Working Mom, preschooler, full family life, full time work, full time garden/home, husband with MS...yep it can add up. BUT I've learned that I have to be productive to get things done and that means being calm. Work is 7 to 4 home life is all other times. I don't go to work freaking out and griping because I had no sleep, something stressful went on at home or Steve had a rough evening. It's noone's fault at work what happens at home. In turn I try hard to NOT bring work home. A coworker drives me nuts..I discuss it with Steve and move on. It's not fair for Steve and Kaya to have my work issue on their plates. When I'm calm and organized I get things done.
4.Just Breathe: Practice that more every day lol I cannot control the tomato plants drooping, the weather, Kaya's mood or Steve's legs. I cannot control hours at work, friend's issues or chores. I CAN control my mind, my mood and my reactions. J once told me to breath deep, lay down and think "Am I stressed and what about exactly? Is that certain stress going to affect me in a month? In a year? If not then let it go, breathe and move on. Don't let things weigh you down in the now and ruin you for the later". He used that method in Iraq and it saved him more times than not. Not always easy and I don't always do it. Panic will send my heckles up, cause me to blurt out or become angry..but I'm working on it :)
5.Listen To My Heart: Seems easy right? Not always. My heart almost always would say "let it go,they didn't mean to hurt you, it's stupid"...then I realized it was my BRAIN that was saying that..my heart hurt. So I have learned to listen to my heart..if it hurts then I change the stress. I have learned that my heart knows joy and to listen. Dishes can be done later, laundry folded after play...to just stop, listen to my heart and answer it. Working Moms carry guilt over not being there at home 24/7. My situation has a stay at home Daddy but I still feel that stress.But I've learned that stay at home Mom's have guilt too. So I listen to my heart. If it says stop, put that down and just fully listen to Kaya I do it. If someone says I spoil her...that's their opinion. Time is short and fleeting. One day our kids will be holding our hands as we pass to the other world. I want Kaya to remember Mom was responsible and got things done but she got her hands messy doing play dough, Mom laughed at my skits, Mom KNEW ME. So I listen to my heart and could care less what a parenting book says, what others think of me. I'm not you, your not me...we all parent different. If my kid comes out responsible, charitable, educated, happy and good hearted..I succeeded. If I have a child that can click off all the boxes at the therapist because I followed everyone's advice and book rules..I've failed.
6.Let Go of What I cannot Control: Ah yes, my hardest one by far! Letting go of what I cannot control. Sounds easy, easy to describe on paper (people that don't want to change no longer exist) but harder to do in real life. I can't control anything other than the Hacienda, our lives and our happiness. I can't control how people perceive me, how they "read" my attitude or how they judge my life. I can't control them talking about me when I do good or gossiping when they think they are right. I can let go of things of the material nature I can't control: I can control my envy over others (I honestly could care less if someone is thin, rich, religious or has everything I would secretly love to buy), I can control my anger most days (Me losing it won't make anyone or anything change..just make me feel rotten later),but I have a much harder time letting go of physical people that I can't figure out. I don't want to control them..just want them to try. Steve always says if we lived in a gated community I'd be the one kicked out because I'd open the gate to let the loons in LOL At first I thought the answer was letting go of everyone that hurt me, offended me or tried very little to change period...till I thought "would I want them to ignore me and write me off if I did that?" so I figured out that isn't the answer. I HAVE figured out that I have the right to be happy, I have the right to enjoy life and to say I am blessed. Noone has the right to take that from me and I can control that! I can go to family get togethers and just let go the trigger questions and emotions. Not allow myself drawn into petty arguments or into heated debates where people try to control you or shame your way of thinking. They won't change my mind..I won't change theirs so let it be. I can have fun at any family members house and not have to pretend to another family member that I didn't go etc. It's their business to control their lives we'll control ours. I don't have to take to heart every whine, complain or injustice of the ones that have no feeling for others plight. So this one I am working on. It's very hard for me to not invite certain people over but if I continue to invite them and then get hurt..I've allowed it. It's not their fault it's mine. I am learning to let go of Kaya having extended family, being included and being visited/knowing on a deep level certain family members. It's out of my control and they have to figure out how to fix it. I may have my days of backsliding...but I'm trying to remind myself of that sting I feel in my heart when we are moved to the backburner. How Kaya's face looked the night I told her she was cancelled on again. I'll move forward in life, love everyone and they all can figure out what they want in life and how to enjoy it. If at the end of our journey we realize our paths ran close to each other but never crossed...then it's their cross to bear not mine.
Summertime get togethers :)
Kaya absolutely loves her cousins. The whole gang ranges in age from 4 (Faith), 5 (Kaya), 6(Jacob), 7(Madison), 8(Dylan), 9(Cody), 11(Kaitlin), 12(CheyAnn), 13(Colin),and 17(Aaron) so when they get together it's always a blast! Faith and Kaya are two peas in a pod (both are in the pic above) and are so much alike it's almost scary! Same hard heads, same quirky jokes and silly laugh.
One of the best things about the get togethers besides the kids having a ball is just how relaxed and fun the whole thing is. Good food, good company and alot of laughs.
Steve always knew his brothers and sisters but didn't get to really grow up together due to divorces, remarriages and other issues so it's really nice to see how they all just fell into place as adults, love each other and enjoy being together. Huge strides have been made as well in the area of his Dad and it's good to see them talking and spending time at the get togethers together. Steve has always said that the past is the past, he's a man not a child and he can either live,forget and love or hold onto anger and bitterness and let it ruin what could be. I am EXTREMELY proud of the man Steve is in this situation and how him and his siblings have let love lead the way. That may sound corny but it's true!
So glad for another Saturday night of laughs, good food, great conversation, awesome family, wet kiddos from water fights and wiggly sprinklers, hugs, kisses, cheers of "Pitch the ball game for us Uncle Steve"...to hugs goodbye and sweet little promises of "I won't cry ok this time because we will get together again soon" :) (Kaya and Faith often tear up when parting because they have so much fun together!!!)
Thursday, July 11, 2013
Bracing for the next appointment...
We made it through the MRI scan successfully. Was VERY happy with how well it went. My butt may have went to sleep sitting there lol but the combo of a new face mask (didn't enclose him totally like the old one) and a stronger Valium and the scans went great! He even fell asleep on the table :)
I try hard to not focus on the next appointment on the 19th. That is the one where the neurologist will read the scans and tell us if his MS is staying the same or getting worse. The scans show lesions and if he has more lesions then it means his MS advanced. Increase of lesions mean an increase in melanin being "eaten" by the MS and increases the chance of a relapse.
I want to hear that his MS hasn't advanced, that the steps we took this last year has helped, that his MS shot every single Sunday night for the last year has not been in vain, that his B12 shot every month isn't silliness, that he's not relapsing, and that his leg cramps/ horrible headaches are not from advancing lesions. I guess I'm selfish, I'm a dreamer, a nutjob whatever lol but I want to hear those words. I want to hear Dr B say that we are right where we were last year.
I hate the unpredictability of MS, the days of him not feeling like getting out of bed, the headaches, the leg aches, the times he forces himself to do something fun and the loathing he sometimes feels for himself.
If you do not have MS you don't understand. I don't have it even though I "See" it everyday...I can sympathize with him but I can't "feel" it because I don't have it. If you are not a support team member for someone that has MS you don't know how I feel or how I deal. Chronic illness is one of those lovely illnesses that has no face or alike symptoms. You can look great but feel horrible. People can see you with your family and think you're exaggerating your symptoms but not realize a huge outing may make you lay on the couch the whole next day.
I firmly believe that every single thing happens for a reason..to make you or break you. Steve often felt he was punished for getting MS. Here his family has addicts, dead beats, less than desirable personality traits and people that could care less about even their own kids...and he..a good husband, a good Daddy, an involved person with family...was dealing with a horrible illness. Till he realized that those other people don't have a support team, don't have true friends, and are not strong enough to take on the illness.
So we take it day by day, appointment by appointment and just live life. So many in the family and some friends think of it as a diagnosis, then Steve then family. When Steve and family are the same thing and he's merely BEEN diagnosed. It doesn't rule our life. Yes it hangs out in the house, it hangs right around the corner of everything we do but it's not our life.
All we can do is prep for the appointment, be honest with the dr and each other, and keep on being a team. We face everything in life together and we do almost everything together..
I try hard to not focus on the next appointment on the 19th. That is the one where the neurologist will read the scans and tell us if his MS is staying the same or getting worse. The scans show lesions and if he has more lesions then it means his MS advanced. Increase of lesions mean an increase in melanin being "eaten" by the MS and increases the chance of a relapse.
I want to hear that his MS hasn't advanced, that the steps we took this last year has helped, that his MS shot every single Sunday night for the last year has not been in vain, that his B12 shot every month isn't silliness, that he's not relapsing, and that his leg cramps/ horrible headaches are not from advancing lesions. I guess I'm selfish, I'm a dreamer, a nutjob whatever lol but I want to hear those words. I want to hear Dr B say that we are right where we were last year.
I hate the unpredictability of MS, the days of him not feeling like getting out of bed, the headaches, the leg aches, the times he forces himself to do something fun and the loathing he sometimes feels for himself.
If you do not have MS you don't understand. I don't have it even though I "See" it everyday...I can sympathize with him but I can't "feel" it because I don't have it. If you are not a support team member for someone that has MS you don't know how I feel or how I deal. Chronic illness is one of those lovely illnesses that has no face or alike symptoms. You can look great but feel horrible. People can see you with your family and think you're exaggerating your symptoms but not realize a huge outing may make you lay on the couch the whole next day.
I firmly believe that every single thing happens for a reason..to make you or break you. Steve often felt he was punished for getting MS. Here his family has addicts, dead beats, less than desirable personality traits and people that could care less about even their own kids...and he..a good husband, a good Daddy, an involved person with family...was dealing with a horrible illness. Till he realized that those other people don't have a support team, don't have true friends, and are not strong enough to take on the illness.
So we take it day by day, appointment by appointment and just live life. So many in the family and some friends think of it as a diagnosis, then Steve then family. When Steve and family are the same thing and he's merely BEEN diagnosed. It doesn't rule our life. Yes it hangs out in the house, it hangs right around the corner of everything we do but it's not our life.
All we can do is prep for the appointment, be honest with the dr and each other, and keep on being a team. We face everything in life together and we do almost everything together..
Fair time...
Kaya was on cloud nine to hit the local 4 H fair last night. We try to take her once a year to see the animals etc. I'm very happy that we have a kid that is happy to see the animals and have a dollar ice cream cone..not ride rides, spend money and play games. That kind of stuff eats money up like crazy and I honestly don't know how some people spend money like that!!
We had to start at her fave two barns..goats and chickens/rabbits then work around the fair grounds. She has to look at every single animal, speak to them etc. She loved her free recycled pig flashlight they gave out at the Recycle Booth. She cracks me up. She goes "This is a trash pig. It's made from recycled plastic jugs we recycle!" Glad she's putting two and two together.
A chocolate chip ice cream cone was a nice treat while walking around. How she manages to eat it while drinking a lemon shake up with her Dad..lol..cracks me up.
She still swears that she saw a horse last year with no bottom. I told her AGAIN that the horse had it's head down and it's bottom against the stall door. She swears it was "awesomely weird" and that it had no head! LOL
Love our crazy silly girl :)
We had to start at her fave two barns..goats and chickens/rabbits then work around the fair grounds. She has to look at every single animal, speak to them etc. She loved her free recycled pig flashlight they gave out at the Recycle Booth. She cracks me up. She goes "This is a trash pig. It's made from recycled plastic jugs we recycle!" Glad she's putting two and two together.
A chocolate chip ice cream cone was a nice treat while walking around. How she manages to eat it while drinking a lemon shake up with her Dad..lol..cracks me up.
She still swears that she saw a horse last year with no bottom. I told her AGAIN that the horse had it's head down and it's bottom against the stall door. She swears it was "awesomely weird" and that it had no head! LOL
Love our crazy silly girl :)
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