That is about it... Other than the insomnia, the icky heat, the usual chronic pain, etc., and being stuck on Candy Crush Level 245 (I've tried well over 100 times, no exaggerating!!!), life is good. I have a lot to smile about. Especially this little special girl who went to a Special Needs Kids Rodeo this past week and had the time of her life. She is so amazing and has proven most of her initial doctors and therapists wrong by never giving up and believing in herself. She radiates and emanates love and laughter and she never ceases to amaze me. We miss her momma so much (my sister, Kathy) but we still have her very special gift with us. Proof positive that love never dies...it lives on through our memories, in our hearts, and through one another.
I have been very neglectful of my blog the past year. I truly apologize to my blog and to my readers, if you all have given up on me. I tend to be writing all my venting, happiness, and general chatter on Facebook. I really need to remember to post here as well because I've lost a lot of myself along the way because I feel somewhat sensored on what I can say on Facebook because most my family reads what I write. Not that I'm doing anything that I need to hide but I just feel more free in what I say.
It's been a roller coaster ride the past couple of months. The worst that happened is my niece Nichole, 32 (almost 33) past away suddenly on May 6. We know she would never leave her two kids behind if she had a choice. The autopsy results aren't back as they have to wait for toxicology results, but we think she might have been in kidney failure or had a bad kidney infection because her lower back hurt her the day before she died. We don't know why she died other than we are certain it was her time. God must have needed her for a special purpose. Of course, we are so heart broken about her being gone but we are also comforted in knowing she is with God and that we will see her again. Her obituary is here. She was and always be such a beautiful woman and I love her so much.
Elyssa is out of school for the summer and she is doing pretty good. She misses her teachers and the kids so it's hard on her. However she likes the swimming lessons and other summer activities. I think there are times she gets fed up with me when I don't understand what she is saying but that happens all year long. Ishe is talking more, which is good, but still is very limited in her vocabulary.
I'm so grateful to have Elyssa because she is so special and she makes me smile and laugh. Life would be pretty boring without her. I'm also grateful for Mom and all she does for me. It's frustrating not to be able to do all I want. My RA is worse as far as swelling goes but there is about a 10% decrease in pain. That isn't good enough for my Rheumologist so he has put me back on Imuran along with the Enbrel to see how they work together.
I had a right heart catheterization last week to check the pressures in the chambers of my heart as well as my pulmonary artery. The pressures in my heart are good but my pulmonary artery didn't respond to the nitric oxide test as well as it did during my last heart cath about 18 months ago. That tells the doctor whether calcium channel blockers are going to be good or if I'll need a different class of medication. My Pulmonologist will go through all the data and call me with a new treatment plan. Either he will increase the current medication, Ditiliazem, or change it to the other type. I haven't heard from him yet but when I saw my RA doc yesterday, the notes of my heart cath were in the system so hopefully I will hear by early next week. I'd hoped to hear from him today but he might be out of town due to the holiday. I have to go in next week on July 11th for my annual breathing tests so if I haven't heard from him by then, I'll bug them.
My pulmonologist's office and nursing staff knows me well because I've had to make Abigail pain in their asses the past three months because I was having trouble getting an appointment. I was Suisse to have an echocardiogram in April, which I did, then see his PA in May. I started calling in Feb for an appt but they kept putting me off saying they didn't have her schedule yet and it was the same story every time I called. It was ridiculous. So, long story short, I got an appt with the doc himself because I made such a stink about them not following through with their own directions to me. They were mucking about with my health and I didn't appreciate it. Then once I saw him, I caught his nurse in a lie about the preauthorization for the heart cath. She said she called the insurance but they hadn't processed it, when in fact, the didn't even have any paperwork from the nurse! She about shit a brick when I told her the insurance didn't have anything. She called me an hour later with the appointment for the heart cath. Yep, they all know my name now! I'm not the only patient who has problems. However, I won't change docs because he is the best.
So, that is pretty much the major stuff. I don't get on my computer much because it bothers my hands, wrists, and shoulders to do much. Then I also have to keep my legs elevated so I do most my computer stuff on my iPad. I haven't even been outside much to take photos and I really miss it. Darn pain and fatigue... I'm still grateful for all the good things in my life and I know there are people in a lot worse health than me, so I do keep things in perspective. I also let myself have a pity party on occasion to get all the negativity out so I can focus on the good gain.
My dear friend Emma wrote a post on her blog, here, about what she would do after she completes her degree if money were no object and she challenged others to do the same. Of course, if money were no object, I would also have to have the idea that health would not be an object as well.
My dream would be to travel the world and photograph all the beauty and incredible sites the world has to offer. I would, of course, bring my Doodlebug Elyssa along and anyone in my family and friends who would want to join me.
I would also add the element of ghost hunting and or research of the paranormal as it is such a passion of mine. I find it fascinating and if I could capture ghosts on film, it would be as thrilling, if not more thrilling as capturing the most beautiful scene or moment in time.
I don't think I would travel all the time though as being around my family and friends is most important to me so in many ways, I am living my dream now.
Once again, I apologize for not writing here. I honestly have good intentions, something always seems to come up as soon as I think about posting here. I need to get in the habit of posting here as soon as I post something on Facebook. That would be the smart thing to do! What an idea! Lol. I also forget I can write from my iPad. I don't et on my PC any more unless I really need to since its difficult for me to sit in a chair and work on the computer for long, which are some of the reasons I can no longer work.
After months of waiting and struggling to get financial aid, I finally got the approvals I needed to start on my new RA meds, Enbrel. The financial aid is enough for four months of copays, which will really help. Not sure what I will do after that though. However, I started Enbrel on Friday and so far, other than feeling more tired and dizzy, I'm getting along ok. I got a sore throat and a cold but it's going away quickly so hopefully I should be ok for Friday when my next injection is due. I was so worried I was going to be really ill. Whew.
Elyssa is still my Doodlebug. She is growing like crazy and growing up in many ways yet mentally, she is still a young child. She is such a joy and really makes me smile. She does things that make me laugh out loud. She s such a special spirit and I'm so blessed to have her.
My mom is so awesome too, I don't know what I'd do without her. She takes such good care of me and Elyssa. I wish I could do more for her, as it should be, but with my declining health, it's been rough. She never let's me feel guilty about asking her to do things for me, although I do... Just because I want to take care of her. She is such a compassionate woman and I couldn't ask for a better mother or friend.
I honestly don't know where my time goes. I have good intentions of writing here on a regular basis and I really need to because I need something in my life to help keep me sane! Writing here used to be a big part of how I kept sane, even during good times. Not that all is bad now, it's just not as good as it used to be and it's mostly health related. I try not to focus on my health, or lack of it, because it takes up so much of my life that I hate talking about it more than I have to. But then again, because of my poor health, it keeps me from doing all I want to, therefore, sometimes I don't have anything else to write about.
This is my space to write what I want, however, it's not a place that I want to be about my poor health. At least not all because, let's face it, my poor health takes up most of my life. It really is up to me to focus on the positive and I decide what I write about. I have so much to be grateful for though, there are people so much more worse off than I am. I certainly don't want pity or people to feel sorry for me and part of me is afraid that is what might happen. But on the flip side, there isn't anything wrong with true friends being concerned.
I've bored you enough with all of that. OK, decision made. I shall try to think of one thing interesting out of my day that has nothing to do with my health to talk about. I may not write it here all the time, but even if I start thinking in those terms, perhaps my whole attitude will shift.
Seriously, done rambling on about that. Now I'm ramble on about other things.
Christmas and New Year's were really nice. Elyssa had a great Christmas and so did the rest of my family. The best gift was being able to spend time with my family and I only wish that I could have seen everyone in my family. However, they were in my thoughts and hopefully I was in theirs because I love them all so much. My nieces and nephews and their families are so awesome and I wish I were more involved in their lives. My health is a lot of the reason why I'm unable to be, and I rely on Facebook and Path to keep somewhat in touch.
Elyssa keeps me smiling and her unconditional love amazes me. She gets upset with me sometimes, which comes from frustration for me not understanding what she's trying to tell me, but it's always short lived.
I can definitely take a lesson from her and her ability to forgive and not be judgmental. I wish more people in this world could see what an incredible example she is.
Now moving on again... I'm sorry, I seem to be all over the place today, so many thoughts running through my mind.
I was looking through some of my poems I wrote in the past, not sure really what I was looking for. I saw one entitled, Hold On, and opened the file. As I read it, I knew exactly why I was prompted to open it because it was exactly what I needed to hear today. So, I will close this post with the poem and I hope you enjoy it. Until next time... take care and remember to tell those in your life how much you love them.
Hold on to the precious gifts,
Sent from Him above.
Hold on to those you love,
Who lifts your spirits.
Hold on to the friends,
Who you hold dear in your heart.
Hold on to the laughter,
And let go of the tears.
Hold on to their heart,
And keep it close to yours,
Hold on gently, not too tight,
As yours, their heart needs to soar.
Hold on to the bonds you share,
For they are all too rare.
Hold on to the understanding,
And strive to forgive.
Hold on to the good times,
And let go of the bad.
Let go of the regrets,
Set them free and don’t look back.
Hold on to a bright future,
Focus on letting go of the past.
Hold His hand in yours and
Hold on for dear life.
Again, it's been ages since I've blogged but I guess November gets the best of me. I lost two people who I love the most in November and it's so hard focusing on the positive when the grief is still so new. In time, it will get better.
We made it through the "Year of Firsts" with Dad, who died last November 15th. It was a rough year and actually, it still is but I really try to stay positive and remember he is here with me. All I have to do is think of him and I feel his presence. I know he will never leave me, nor anyone he loved.
In fact, we met with Elyssa's teacher last month and she told us that Elyssa had a guest at breakfast one morning. Elyssa was chatting and giggling with someone who no one else saw and so her teacher asked Elyssa who she was talking to. She replied, "Bubba!" then continued laughing. Her teacher said, "Tell Bubba it's time for him to go because it's time to get to class." Elyssa giggled and said goodbye to Bubba and went on her merry way. You just can't make this stuff up... especially because we are well aware of Elyssa's gifts. Besides, their bond will never be broken, just as his with any of his family. He loved us more than anything and we all knew it.
Things like that keep us going and make us smile. I know Dad wouldn't want us to wollow and be sad, especially since he always had a smile on his face and was such a happy man... well, he still is.
The other person we lost is my sister Kathy, Elyssa's mother. It's hard to believe it's been three years since we lost her. It was exactly three years today, but on a Thanksgiving. We will always remember that she died on Thanksgiving but thank goodness it falls on a different date each year so we can at least have that distinction that the anniversary of her death isn't always on Thanksgiving.
Kathy had a brilliant mind and although the last few years of her life were rough, she put Elyssa first. In fact, I know if it weren't for Kathy's hard work, Elyssa wouldn't be as high functioning as she is today. Kathy would say it was a group effort but really, it was Kathy who was proactive enough to get Elyssa into all the right programs.
I know for a fact that Kathy would never leave Elyssa willingly so God must have needed Kathy for a very special reason. She is also reunited with the love of her life, her first husband Sal, who died a couple of years before Kathy did.
I really don't focus on my Dad and Kathy's deaths but their lives. November is just the month that we lost them in the physical sense and that is the hard part. I would do anything for just one more hug from both of them but that will have to wait until we are together again. Until then... I will keep focusing on living my life, despite my health challenges, and raising that sweet girl, Elyssa, who was entrusted to me and my family. She's such a precious gift and I'm honored to be a part her life.
Most of all, I'm honored to have been a part of my Dad's and Kathy's lives. I can't imagine what my life would have been like without them. Two things death cannot take away, the love and the memories we share... and the love continues on and on if you leave your heart open, you will feel it.
I cannot believe it's been over a month since I blogged... I swear, I don't know where time goes. Now we're even half way through October! Yikes... before I know it, the Holidays will be here. *sigh* I always enjoy the holidays but I stress over things I know better than stressing over. It's easier to say "I'm not going to get worked up this year," but I always seem to worry if I've got the right things for Elyssa, if she'll like them, if they'll be good for her development, etc. I'm sounding like a mother, aren't I? Well, no doubt about it, that's what I am since I took her in after Kathy passed away. Don't misunderstand me, I love it and I love her with all my heart and there's nothing more I'd rather do for my sister than to raise her daughter.
It's been a crazy month despite E being back in school. Between doctor appointments (hers, mine, and Mom's) and other things, time just goes too quickly. Then this past week, Elyssa brought home yet another cold and she's been sick for over a week and was home for three days last week. Now this week is a short week due to school holidays and parent/teacher conferences. I'm tired just thinking about trying to keep her entertained. I caugth her cold too but fortunately, I didn't get it as bad as she did, thank goodness! Especially because it's always very scary for me to get sick like that. Whew. *knocks on wood*
Elyssa has discovered she likes my drawings. I think they're hideous, however, I don't suck at drawing as bad as I used to. I don't know if my hand is finally listening to my brain or what's going on. Honestly, as I was growing, I seriously doubt that my hand and my brain were on speaking terms as far as the artistic talent went. But now, at least they're on speaking terms and some drawings aren't half bad... or at least she can determine what the drawings are.
Actually, since photography became a passion, I have had other artistic talents awaken, such as writing. I really enjoy writing and need to do more of it. Especially since I can't always get outside to take photos, at least I can write my feelings down... even if it's not in an artistic form, I could at least blog and get some of my feelings out. I get very frustrated and depressed at times because I can't get out and take photos like I used to. I miss my drives where I'd take a day and go off by myself and drive around in the mountains and take photos. The mountains are so incredible here, that it's a waste not to do something. But there are days when I cannot even get out of the house because I feel so rotten.
I'm working on a couple of things that will hopefully help me feel better but I'm not going to jinx anything right now by giving it all away. I want to see if it will work first. I'll give you a little hint though, I'm going to do a detox to get all the ickiness out of my body then am going to have my feet worked on, called Foot Zoning. I'm quite excited about it but that's all I'm saying at this point. I'm not asking for a cure, since there's not one, but if I could feel better and have a better quality of life, I would be completely ecstatic. More to follow...
Last Friday was Elyssa's 11th birthday! I can hardly believe it because it doesn't seem like that long since she was born. What an incredible gift given to our family... Not that every baby born or a marriage that takes place aren't wonderful gifts, but there was something special about Elyssa and the timing of her arrival. Our family had a lot of problems at the time and Elyssa seemed to bring us closer together and we were able to let some of the anger and bad things go. Then later on, as she grew, we discovered her developmental delays and all the testing and heart ache that was involved made us even closer.
What she lacks in development, she more than makes up for in other areas and she is a very special girl with many spiritual gifts and I have no doubt she has an understanding of what life is all about more than we will know until it's our time to leave this earth. She teaches me something every day and it is me who is blessed for having her in my life, not the other way around. Caring for her is a privilege, not a duty.
As we thought about Elyssa's birthday and what we'd do to celebrate, it dawned on us that she'd never had an actual honest to goodness birthday party with kids so we decided it was high time she had one. We invited her cousins and one friend from her class. Not all of her cousins could come and that was a disappointment but we understand that life is crazy... but actually, the number who came ended up to be just right, even though we missed the others.
They played games with balloon animals, bubbles, and a piñata filled with lots of goodies. I think the adults had as much fun as the kids did! Then after the games, we had worked up an appetite and had some yummy pizza. Then despite being full of pizza, we broke out the cake and ice cream! It was nice to sit around and catch up with how the kids like school and I had fun taking photos.
Sunday morning, Elyssa woke up and the first thing she said was, "More!" Of course, that meant she wanted another party! But she was really perfectly happy to play with all her fun gifts she received. She couldn't decide what to play with first so she got everything out to play with and she played with a bit of everything.
After the birthday party, my brother J Dee and SIL Patti were on their way home and they stopped by the cemetery, just to see if my dad's headstone was there. They'd checked three or so days before and it wasn't there yet (just the base) so to their surprise, the headstone was there!!! He sent me pics and called Mom right away with the news and we were really excited and relieved. Now I can stop cussing the headstone guy out every day ;-) (just in my head...).
After Elyssa got out of the bathtub, Mom and I put her in the car and I drove us up to the cemetery so we could see the headstone first hand. Finally, after months of waiting and stressing, and wondering if it would ever get done, it is. The last great tribute to Dad's final resting place is complete. It's just perfect, sitting right by Kathy and Elyssa's bench headstone.
I feel very blessed and grateful for all I have in my life, even though I grumble and get fed up at times, it's the happy times like these that get me through the tough times.
I just need to remember to be patient and things will usually work out... and although I am positive most the time, being patient is not one of my strong points... one of those things I'll probably always be trying to over come. But if we didn't have those things to over come, then life wouldn't be a challenge.
I know I'm weird... but I like a challenge.
It seems as if there is always more to any given situation than we realize.
This past week or two, I've awakened from a fairly sound sleep with the compelling feeling that I need to go look for something in my tv room in/in/around my computer desk. It starts to be things I've been looking for, but always different. Tonight, for example, was my box of checks. I really need to find them but not in the middle of the night.
Each night, I find different things than what I originally started to look for but it doesn't see, to bother me, like it would if I were really on a hunt.
Now, here is the thing. As reaching around my monitor to some small books, I found a treasure, a book that belonged to my late sister Kathy that somehow got mixed up in my computer things. It is a book titled, "Chakra Meditation Guidebook." I thought to myself, "SCORE! I found a cool book!".
Then I flipped to the back of the book and saw it is signed by the authors, which tells me that Kathy really liked this... Double score.
I dropped the book and an old folded envelope fell out of the front of the book. I opened the fold and there were several notes, phone numbers, and appointment written down, which makes me think this was during Kathy's first marriage (to her true love, Sal Ortega). I could be wrong but I'm sensing it too.
As I folded the envelope back up and placed it in the book, on what had been the underside of the envelope when I first found it, I found a poem, written to Kathy... Which really makes me feel it is from Sal. I get chills just thinking about it... And of course, tears are rolling down my cheeks.
In this world of dreams that I've created,
Sparrows fly with you across streaming sunlit skies
And horizons vast and blue ice covered gardens
Dissolve into dew that sparkles in your eyes
In this world of dreams that I've created,
Nothing ever dies.
- Unknown, possibly the late Sal Ortega
Sal and Kathy divorced later due to distance (he moved to New York to go to school and be near his sons) and all that distance does to a relationship. However, they never stopped talking and Kathy never stopped loving him and I know in my heart of hearts, he didn't ever stop loving her... He died 3 or so years before Kathy did so I know they are once again reunited and for eternity.
The poem says it all... And I finally found what it was that I was supposed to find. Can you let me sleep now, Kathy?? ;-) Love you, sis.
First of all, if you received some SPAM from my email account, I apologize. Friends immediately informed me that my email was hacked and I immediately changed my passwords, including my blog PW in case it's connected to the link here. Bastards. Why don't they use their "skills" for good? Invent something useful instead of doing stupid shit like mess with people's private email addresses and bothering innocent people. Dorks.
OK, done venting.
Wait... I do have one other thing that needs to be vented. Back in late January, my mom and I picked out a headstone for my dad's grave (and will be for Mom's too) and we paid for it all then. The guy (Wallis) said it wouldn't be done by Memorial Day but shortly after, into June. We were a bit disappointed because we were hoping it could be done by his birthday in April but we understood others were ahead of us.
June went by... no headstone... then perhaps July 4? Nope. Oh, maybe August 1? Nope. OK, getting really upset with him now, kept getting put off but we really gave him a firm-better-have-it-done-date of August 23, which was my parents' 55th Wedding Anniversary.
I spoke with Wallis every day for the week prior, hoping it would be done each day. More delays, him having problems with employees/old employees/business issues/other-who-knows-issues but we kept the faith that it would be done by the 23rd.
I spoke with Wallis on the 20th and he said he would get the base of the headstone in cement and then all he would have to do is install that portion in the cemetery on the 22nd and then the headstone on the 23rd. OK.
Spoke to him every day still, finding out if we were still on schedule for the 23rd. He told me on the 22nd that it would be later in the day but he would have the headstone installed. Mom and we kids had a plan to meet at the cemetery at 5:30 on the 23rd to see the headstone then would meet at the house at 6pm for cake and ice cream.
5:30 came, no base even. 6:00, had just gotten home and he calls me. I'm fuming and he knew I was MAD. I told him he ruined the day for my family. Flat out. He knew he screwed up but then asked for my help. He had the base in his truck ready to go but didn't know where the plot was so I met him about an hour later to show him where it was so he could begin work.
I had time to calm down but I was still so upset and emotional because I knew how much it means to Mom to get the headstone in so there's more than just planters and other decorations to mark his resting place. Wallis and I had a good chat but he understood just how much he let us all down and he did feel awful.
I understand how difficult it is for the small businesses these days and that's one reason why we've been so patient and forgiving.
Wallis promised me he'd install the headstone Friday morning but I knew he didn't because he didn't call me to tell me it was done. Mom and I drove up to the cemetery anyway just to see the base and that was actually done. He called me Friday evening and he promised again, in the morning... which was this morning. I never got a call so I don't think it's done even now... and it's coming on about the time in the evening when he calls to tell me yet another excuse. If he does call, I honestly cannot take talking to him again... so I'm letting it go to voice mail and hoping it's good news but I kinda doubt it... that is if he bothers calling at all.
I had an appointment with my pulmonologist the other day and it seems some of the medications have started to have some positive affects on keeping the Pulmonary Hypertension (PH) and Pulmonary Arterial Hypertension (PAH). I was getting a bit of old data though, however, between last October and this past May, the pressures in my lungs have gone down a little (which really makes me happy)! It's not leaps and bounds but I'll take any positive news. However, it's almost time for my next Echo-Cardiogram so we'll see if the pressures have held their level or improved a little more.
The physician's assistant (PA) was new to me and I have to say, I was really impressed with how thorough she is. She is concerned about my breathing though so I have to have some more breathing tests which aren't fun because I come close to passing out several times during the visit.
It's really scary having PH and PAH along with all my other diseases. Take Rheumatoid Arthritis. So many people think it's just painful and degenerative joints but it's much more serious. It gets into organs and causes all sorts of problems, such as the PAH and PH. RA got into my lungs and voila... I also have a very nasty heart murmur because of the pressures so it's a good thing I was diagnosed when I was or I wouldn't be here today.
I am so grateful for living in this day and age where there is so many medical advances to treat these diseases and hopefully prolong life... and hopefully it will be a life that is worth living. I fight every damn day to stay positive and to find things to make my life more enjoyable. I try to focus on what I CAN do and not what I can't because honestly, the can'ts outnumber the can's.
My family and friends are so important to me and it breaks my heart when I can't go to family gatherings. I feel like an invalid at times and I hate the helpless and aliented feelings. However the wonderful internet keeps most of those feelings at bay. I also have a wonderful mother and awesome siblings - and their spouses - and last but not least, Elyssa, who keep a smile on my face and remind me that I am far from alone.
Blimey. I hate this. I'm starting to feel the positive energy slip away that I so desparetly need to get me through the day. I've had several incredible teachers in my life who both told me and showed me that a positive attitude is key to fighting any battle in life as well as to stay happy.
I'm sure part of this downhill slide is the stress of being worried about my friend Carol, who was just diagnosed with breast cancer but at the same time, it's been a while since I've had a pity party of my own.
My pity parties are days when I bury myself in a hole and don't come out for a few days. While I'm buried, I'm doing my best to get rid of my negative energies and feelings so I can get on with the positive again.
I really try not to bother people with my health issues - at least not my extended family because they have enough going on in their lives and the last thing they want is a sick relative whining about what ails them. However, anyone who deals with serious illnesses like mine, tells me that I'm not whining, I'm just stating facts.
Not only am I frustrated that I'm so limited in what I can do and feel up to doing. It's not just "oh, I just don't feel like it today..." it's "I can't seem to get enough air in my lungs today to climb the stairs to go anywhere!" Not only is the Pulmonary Hypertension and the Pulmonary Arterial Hypertension serious, a pain, but they're death sentences. BUT I'm SO NOT done with life yet. Either I will new lungs (which I won't be a candidate for due to the Rheumatoid Arthritis, which caused the PH and PAH to begin with, thank you very much, damn autoimmune diseases anyway) or something like congentive heart failure.
It sucks. But I fight every damn day to stay positive and for my life.
It seems as I grow older, life increasingly lets me know it's not turning out the way I dreamed it would as I was a kid. While playing Barbies with my friends, jumping on the trampoline, having sleepouts, running around the neighborhood until dark playing night games with the kids in the neighborhood, raking leaves in a pile then jumping in the pile, building snowmen, having snowball fights, never having a care in the world.
We dreamed of being a nurse, doctor, cook, teacher, pilot, a wife, a mother, a grandmother... having a husband to love and who loved me to grow old with... living a life and never uttering words such as murder, drugs, cancer, diseases, or death. Our parents, friends, and everyone we loved were going to live forever.
Of course, I know now it was all foolishness. As nice as it was to dream like that, I grew to know that without adversity in my life, I didn't really know what love meant nor did I really appreciate what it was to be happy.
Back in the late 1980's, my childhood friend Carol was going to Utah State University in Logan, Utah, living her life, preparing to be a teacher, which she always wanted to be. She discovered a rather large lump at the base of her neck and she thought it was part of the flu because she hadn't felt well lately. Being a student and working too, it's hard getting the rest we need so she brushed it off.
Next time she came "home" to the Ogden, Utah area, she saw her family doctor to show him this funny thing that had started to grow and was just getting bigger. She thought perhaps it would be a "give me some antibiotics and get some rest" type of an appointment. But oh, no. Not this time.
Turned out she had cancer. Hodgkin's Disease. Of course everyone around her was freaking out, including yours truly, who never really dealt with this type of illness before. Plus, chemo treatments being what they were back then, were awful to go through. But it wasn't about me and I kept the focus on her. Although she was scared, she knew life wasn't done with her yet.
If memory serves me, I think she took about 18 months away from school to battle this rather large and cancerous nodule at the base of her neck, that she called Norma. Norma was a formidable opponent but she hadn't met Carol. Carol kicked Norma's butt to the curb. She returned to school, earned her degree and teacher's certificate and she's been teaching 8th grade English at the same school since.
I admire Carol so much after she won that battle. I always did but after that, even more. I actually applied a lot of the lessons I learned from her - a lot of it her sense of humor. Between Carol and my dad, I have learned so much about how important a sense of humor and a positive attitude is. In fact, it's hard to do battle without being armed with the attributes.
Then, back in 1997, my family received the first really awful news we'd ever received as a family. My brother Bob's wife, Lisa, had breast cancer.
I'd heard it but had no idea just what a dirty word cancer was. Never do you know what it's like to get news like that do you really know what it's like to live it. Not that I lived it but I saw my brother, mid thirties, and his wife of about 15 years going through the biggest battle of their young lives. They were not alone either, they had four kids, between the ages of 5 and 14 to live through the battle.
Lisa battled the breast cancer like the warrior she was and she had it well on the way and had the cancer beat when they found cancer in her brain fluid, which affects about 5% of women with the type of breast cancer she had. The chemo treatments were such they removed the brain fluid at the exact time they put chemotherapy drugs in her brain through a shunt at the top of her head... which was a very delicate procedure. However, during the procedures, she developed a large blood clot and had function in one half of her body. Then we got the news that there was nothing they could do and she was losing the battle, or should I say her body was losing the battle. Lisa never gave up her strength. She fought valiantly and on April 12, 1999, she passed away.
As hard of a lesson as it was, through the eyes of my brother and his kids, I learned that things happen for reasons. Reasons which we knew but won't find out in this lifetime... other than knowing that God needed Lisa for a higher purpose. Through the years, Bob and his kids have struggled but over all, they've done really well. I've mentioned Bob's wife Joan, whom he married two years ago and I'm sure that Lisa had a hand in sending her to us through my Aunt Jan (who knew Joan for many, many years and set her and Bob up on Facebook and it was pretty much love at first hello).
Then about two years ago, I got a call from my dear friend Linda to tell me she had a very aggressive form of breast cancer.
She had a clean bill of health less than six months prior (including a mammogram) but she discovered a lump and went right in to the doc and she was already in stage 4. However, she wasn't going to let it stop her. She immediately found the best doctors in the state, had a double mastectomy and started treatments as soon as she was able.
I knew in my mind that Linda had a different form of breast cancer than Lisa and that there had been SO many improvements over the years, but deep down, it scared the hell out of me to think of losing Linda. She wasn't just my friend, she was a sister of my heart. However, I wasn't going to let any negative feelings reach her - she was going to beat it and that was that.
Linda was amazing the way she fought and won. Nothing was going to stop her from living her life cancer free and her life was going to be on her terms, not a disease's. Two years later, she's still cancer free.
Yesterday, I heard from Carol.
They are still doing tests to decide course of treatment but so far, it's not related to "Norma" but is breast cancer. However, once cancer is in the lymphatic system, it hides and likes to play games so this nasty cell could have been hiding for years. Rotten bastard-ette. I think I'll call this thing Babbs. Just irritating enough and it is close to boob and will probably make Carol laugh.
Carol found a good team of doctors that she feels very confident in their abilities and treatments so I feel the same about them. I think she's going to be OK, in fact, I'm going to do anything and everything within my power to ensure she is.
Friends like Carol only come around once in a lifetime. Back in June 1974, a little brown hair, blue eyed girl rang our doorbell just after we'd moved in and asked if there was any 7 year old girls who wanted to be her friend. This new kid on the block jumped up when she heard the girl and was eternally grateful to have such an invitation.
It seems as if I'm always playing catch up! I've never felt so behind in my life. I hate to say this is how my life will be from this point forward but I don't like saying that because that would mean I'm giving up and admitting defeat by my lack of health. HA. Not by a long shot. I have to admit there are days when my hiney is beat by the Pulmonary Hypertension and RA, etc., and that is a part of life but not every day will be like that because I won't allow it. I just have to learn my paces but still find a way to keep moving forward. Hmm. That still sounds like I'm giving up but really I'm NOT. Just accepting certain things. I'm going to have bad days but I refuse to let there be more bad than good. So there. Take that.
Now back to catching up. Besides my health and lack of it, we've still stayed busy with keeping Elyssa entertained for the summer. My sister in law, Joan is an absolute Godsend as well as my Mom and my sister Susie. Susie gives up an afternoon of her only day off to take Elyssa to a movie or to do something fun. During school, she takes Elyssa to her dance lesson and that helps so much. It's a 30 minute drive one way so I know how much of a deal it is. Joan took Elyssa to her swimming lessons and then on play dates during the week too. She gave up two months of her summer to do that for Elyssa and we can't thank her enough. Now Joan is in Indiana, enjoying her new grand daughter for a few weeks so I'm glad she is having some fun! My brother Bob stayed home due to work but he'll fly out to be with Joan then they'll fly home together. They are such a loving couple and it's hard to believe they've been married two years now. Bob lost his first wife in 1999 to complications of cancer and a brain tumor so it's awesome that he and Joan found one another... actually, my Aunt Jan was the matchmaker there! LOL They both have kids who are grown with their own families and they've all blended really well.
I'm also so grateful to my brother J Dee and his wife Patti who are also doing things for us all the time. They both work hard and they keep busy with their kids and grandkids but always find time for us. The other night, Elyssa asked where they were and practically demanded they come over. It was so funny... good thing it was a Sunday evening so they were able to stop over. All was right with the world after that.
Elyssa is really funny that way. She will think of someone she hasn't seen in a few days and it's all she can do to not get in the car and drive herself to see that person. I think most of it is she senses people need a smile or that my Mom needs to see her kids. Elyssa is just so special on so many levels and I don't mean to talk about her all the time... she has become a major part of my life ... but it's more than that.
Now onto other things. A friend of mine sent me THIS VIDEO link of a skit that some senior citizens did about synchronized swimming. It is SUCH a hoot! I haven't giggled this much in a while. Enjoy it, it is well worth the watch.
Now that I've rambled on... I need to run and get in the shower. Well, run? No but go, yes. LOL Mom and I are taking Elyssa to pick out some new glasses for school. We have done pretty good in getting things ready for her to get back in school in a couple of weeks (hooray!!). Believe me, she is more excited about getting back to school as we are! LOL
A few months ago, Mom's cell phone plan was changed (one of those merges) and she wasn't too happy about it so I offered to see what kind of a deal she could get on my plan. It was a deal we couldn't resist AND I got a new phone out of the deal. Not that my current one wasn't awesome but I figured too much technology would freak her out... and I was right about that! She's doing pretty good on it though.
Today I realized I still had over 1500 photos and videos on there that I never removed so I spent this evening going through them and deleting them and forwarding to my email, etc. There were some very precious pics I found of my dad before he died, such as this one. This photo is everything my dad stood for: Love, family, and laughter. It brought tears to my eyes, of course, but they were happy tears because I miss him and love him so much. He was such an incredible man and my life is a million times brighter than it would have been without him.
The best thank you to him, was a hug and he gave the best hugs. I miss those days when I'd be rushing out the door saying my goodbyes, and he'd grab my arm and asked me, "Where are you going, young lady?!" as he pulled me into his arms for my daily hug. Nothing will ever take that away from he and I. It was awesome. I didn't even care if I was a couple minutes late, even this person with OCD who always has to be on time... besides, I calculated it in the 10 minutes cushion time so I really wasn't late, late. LOL Yep, OCD.
Then, I saw this photo. Tears flowed down my face and there was not a smile with the tears this time. I looked closely at his eyes and saw the misery and the pain. He suffered so much, being trapped in that mind and body that no longer let him do what he wanted. Parkinson's Disease and Lewey Body Dementia robbed him of many happy years with his family and I can actually say that I hate the diseases.
Now, Dad didn't know I took this photo otherwise, he would have put on a brave face for the camera. Like us, we put on a brave face for him and laughed at everything we could, to keep from crying. This photo really breaks my heart and I know Dad would be sad as well. However, this is not how I choose to remember him. I remember him for the man who called me Kammy, Kammy Jean, Honey Pot Pie, or just Honey, Sweetie, Sugar Plum, or whatever endearing name that came into his head. I really was his Kammy Jean though and that's fine with me. When I was a teen, I used to be embarrassed when he called me Kammy but I secretly loved it because HE called me Kammy.
Not only was he a special Dad, he was an incredible Grandfather. Any of the grandkids will tell stories of when they were young and how much fun they had with grandpa. He didn't have to spend money on them, just spend time. He always had a hug and a kiss and he had a special relationship with each one; making each one feel as if he or she was his favorite. Which was true... he had a lot of favorites! He even had special names for each one.
Knowing my dad is in a much better place now eases my pain of missing him somewhat but it's still not the same remembering his hugs. I'd do just about anything to feel his hugs again.
Love your family and friends... no one knows what tomorrow has in store.
Here are some photos of Elyssa, taken by Colonial House Portraits, in Layton, Utah. I'm so pleased with how they turned out. Elyssa looks more like her mother more each day, I think!! Her little expressions are so much like Kathy's and I love seeing them.
Here she is with her classmates; all really cute and sweet girls. I'm proud of all of them and the progress they make and all the hard work they put into each class and recital.
Elyssa is really excited for the new dance class to start again in September. I hope the two girls who are in her class come again and that they also get some new students in the class. It's a fun class for the kids to take and they are made for special needs kids and their challenges.
Meanwhile, Elyssa is staying busy with swimming. Her wonderful Aunt Joan (my SIL, Bob's wife) has been kind enough to take her to her lessons every week AND on Monday and Fridays. The majority of Elyssa's summer fun is due to Joan and my sister Susie, who takes Elyssa out for a while on her day off. The other days, she's mine to entertain, which I love too. Actually, E doesn't seem to mind our days at home, in fact, she and I nap quite a bit in my recliner. Ahhh, yeah, that's the life.
Let Freedom Ring!!!!
My heart-felt thanks all those who fight to keep us safe or given their lives for what they believe in, as well as their families who believe in them and what they're doing to let them go.
Lately I have been thinking about the past ten or fifteen years and about how much my life has changed and how opportunities where doors shut, there windows to unknown places were left open to what turned out to be much better places with better opportunities. This is the second part of a two part post. The first part is here Forgiveness is Power , if you didn't get a chance to read that one, you might want to. Just writing about it helped me realize how much of a grudge I still felt for my old boss kept me from moving forward.
Before I worked for the big corporation that I began working for in 1995, I was a dental receptionist from 1986 to late 1990. I really thought I loved my job. The people were incredible, I had fun, my coworkers were awesome, and I had a great boss. After working there for the four years, the dentist decided to bring in a consultant to make sure we were all producing all we could. The consultant <Pearl> (the <> means shivers cuz I still get shivers when I think of her) company came in to tell the dentist where his practice was losing money and opportunities. It's always about money, isn't it? Until you find out that it's just the way life is.
Anyway, the lady wanted to spend some time with me to go over my responsibilities (as she did with everyone), just after 3pm on an afternoon when my morning of productive work (crown and bridge work) had just fallen apart and I had until 5 pm to fill four hours of productive work. I asked if we could reschedule our "meeting" and told her why but she refused. Needless to say, my head wasn't where it should have been and I came off very unwilling to help her. It was a disaster. I stayed until 7pm that night (after getting there at 6:30am) trying to fill the time. Even at that, the schedule was crap the next day and I didn't sleep a bit the next night.
A month later, the lady came back and gave us all of her findings and of course, my efforts were not shining and needed a lot of improvement. I knew I wasn't perfect but I also knew that I did the work of three people. Since I started my job, two people resigned in the front office and we never replaced them because I stepped up and did their work. Did <Pearl> take any of my problems into consideration? No. But I was willing to do some sessions with her to improve my skills.
A week later, I was fired because <Pearl> told the dentist that she refused to work with me and knew that I would never change. So, a man who had known me personally since I was 11 (his wife was one of my church teachers and he was my dentist too) and worked for him for 4 years, listened to a woman who met with me for 30 minutes in one of the worst crises I've had at that job, and whom HE was paying well over $3000 per session, tell him that he needed to let me go.
Needless to say, I was dumb struck. I could not believe I was fired. I was hurt most of all because I thought my boss knew me and knew how much I loved working for him and loved the patients and coworkers and I had done anything and everything to make the schedule run smoothly every day.
One outsider colored me gone with one swipe of a crayon.
Then I got a call early the following Monday morning from one of the dental assistants, D, who was cross trained to do my job when I was sick or when I was on vacation - that is, to limp along until I returned. She was in a panic and wanted to know where all the charts were for that day. Apparently, the dentist called her over the weekend and asked if she'd fill in for me and that I wouldn't be working there any longer. He made it sound like I quit, which was nice, I think... or perhaps to save his ass from everyone being mad at him, I don't know. But I told her what happened and she was floored. She asked, "How can he let you go?! Doesn't he know you do the job of three people?!" I just responded, "Obviously my past glowing employee reports meant nothing because he listened to <Pearl>." D was SO upset and she happened to be a relative of his so I think she must have said something to him.
But by then, I didn't want my job back. It took just a few hours, once the initial shock of being fired wore off to realize how stressful my job was and I carried it home with me. I was actually relieved and felt as if a huge weight lifted from my shoulders. I didn't realize it but the stress was killing me.
I really loved the people, both coworkers and patients but Dr. C. really did me a favor as well. It took me a while to see that Dr C really cared for me and was looking toward my future because I truly believe (now) that he was prompted to hurt me for a short time because it was the best thing in the long run. We had a few discussions about me wanting to go back to school but either it wasn't the right time or there was not a way for me to go while I worked there. I think he saw <Pearl> as an out, to kick me out of the nest, so to speak. I truly believe it hurt him to do so but he did it because he loved me.
I missed everyone like crazy but I still went there for my dental treatment because I believed they were the best. Not too long after I'd returned for an exam and cleaning, when he and I were alone in the exam room, he quietly apologized to me for not knowing all I did for the practice and for him. I told him I appreciated all he did for me because I was in a job I really loved and there was SO much room for advancement and I'd planned to go back to school. He really smiled, thinking back because it was his plan all along or at least his part of His Big Plan.
He passed away a few years ago from a brain tumor and I only hope he knows that I managed to get my degree and not only work purposes but more importantly, for ME. How important the thirst for knowledge is and how fun it was to learn all I did. I actually ended up liking my electives better than my major by the time I got my degree! LOL Must have something to do with burnout! Really though, getting my degree opened the doors and windows to my mind and it's been wonderful to continue to applying my knowledge to my every day life.
I look back on those days now and think... wow. If those people like <Pearl> didn't come into our lives, we would still be up there in that nest. I hate to admit she was part of His Plan, but she had to play some little role. Man. I really hate admitting that because I could swear she was all evil. ;-)
For the record, I never stopped blogging, there were just large intervals of time between posts. Time slipped away from me, which it seems to slip quicker away the older I get or the more illnesses I need to deal with. Ten years ago, I never saw myself here so be careful not to put off plans of things you really want to do because you may not get the opportunity to do them. Our bodies seem to have minds of their own, especially mine... and it's a stubborn one. ;-)
I do have my pity pot days, as I call them, when I let myself feel sorry for myself and get mad at the world and fate for making it me who gets so sick instead of some rotten person who needs some punishment. However, I by having the pity pot day, I get rid of the negative emotions and get on with life and see just how much I have to be grateful for. I am so blessed to have the people who I have in my life. I also have my cameras, photos, books, writing, DVDs, and TV. But really, nothing outside of the people really matter much because without the people, nothing else would matter because I couldn't share anything.
Well, I warned you with the title. ;-)
I want to wish Dawn a very happy birthday as well as Cowboy Joe (Sorry I'm late!!) and Vickie happy happy birthdays as well! I know I called Vickie but I didn't want to forget her here.
I called my pulmonologist's office today to check on my sleep study results and no big surprise, I need an ASV sleeping device. It's in the CPAP and BYPAP category but it's a lot more technical and more expensive, I'm sure. I don't know why but I have to go pick it up from the medical equipment company instead of them delivering it. I don't know when yet, probably the first part of next week because they have to order one from a warehouse. *yawn* yep, I'm sleepy too.
Elyssa is getting along really well in swimming this summer. My wonderful SIL Joan is taking her swimming as well to her swimming lessons with the teacher Tiffany. Tiffany is wonderful with Elyssa and teaches her one-on-one and E listens to her (where she wouldn't when I was there in the Mommy and me type class). She's working on pushing her legs down to the bottom with her abs. Today was her 4th lesson and I just scheduled four more, through July. I might even got two more into August but we'll see how she does.
Elyssa really misses dance class! Which reminds me... I need to see if they have the schedules up yet. She loves the self expression and the best part is watching herself in the mirror. Hmmm... maybe not, I think she just likes the self esteem it gives her; she beams when she's dancing around even at home in the kitchen area. She will probably never be a prima ballerina but she is already is in her heart and mine...and that is all that matters.
Not much else to say really. I could complain about health issues but I won't because it's boring. Some days it's pretty funny though, when try to find the thing that doesn't hurt. It's usually the eyebrows and the ears. ;-)
I hope you all are having a great week! Take care!
Saturday night I went to my third sleep study lab since they are trying to sort out a solution for me to keep my oxygen saturations at night from dipping way too low. As I sit in the chair and as they are hooking me up to the computer, I told them I wasn't sure if they were monitoring me as I'm sleeping or setting me up to the electric chair! There is so much goo they put in my hair to hold all the monitors and it is not fun getting it out even by shampooing.
The tech guys were really cool and nice, telling me things about the ASV machine and what to expect during the night. I actually crashed big time... Elyssa must have wore me out more than that thought.
As a background, the first test was to see if I really had a sleep problem. Findings were: Yes, indeed! The second test was to address said problem(s) and see if CPAP or BYPAP were the answers. And finally, the third test to try and come up with a better solution because he CPAP and BYPAP didn't work.
The techs actually started me on BYPAP last night to see if it was some misreadings... good try... but um... no. The tried a fairly new system on me called the ASV. As of what the tech said this morning, we had success!! Of course, I have to wait until my doc reads it over and and give me the official go ahead to get me one of these machines, which probably cost an arm and a leg - or at least a leg!