Posts
As National Day of Prayer draws to an end, I've just shared my thoughts on Mother's Day and resources for infertility/loss related to this holiday on Harvesting Hope from Heartache™.
The Women's Health Hero voting has been extended from May 7 to May 14, so please feel free to continue sharing my profile link! We are up to 200 votes and currently in second place. On a very liberal website, I don't see these votes so much as being personal votes for me, but votes speaking affirmation of the gift of life when my profile is paired against several abortion-advocacy and other feminist nominees. (There are also some very cool and worthy profiles listed there, and I've actually added my own vote to several other profiles, but most of the lead vote counts are currently going toward abortion-related women.)
Here's a writing challenge I hope to enter, if I have the physical energy and mental focus in do the writing in the next few days: Hope to Cope with Pain
One day left to take advantage of a 10% discount on Affordable Mineral Makeup™ over on my InnerBeautyGirlz page. :)
And related to CFS/XMRV, here's a rather technical, but interesting and important letter from Judy A. Mikovits, PhD, Director of Research, Whittemore Peterson Institute, Reno, Nevada (whom I consider a personal champion in my battle for health) to the editors of the Bulletin of the International Council for CFS/ME.
Showing posts with label prolife. Show all posts
Showing posts with label prolife. Show all posts
Thursday, May 6, 2010
Wednesday, December 16, 2009
Life is Short
I hope this post isn't too much of a downer. I have a heavy heart tonight and just need to type it out somewhere. Since it doesn't seem like many people actually read this blog anyway, seems like a good place to work out my thoughts without casting gloom over too many.
This year I've had two author friends who had brothers-in-laws hit by drunk drivers. One was killed, the other is recovering surprisingly well. But both accidents were sobering reminders that life can change in the blink of an eye.
Last month a friend from Jr. High, whom I had only recently reconnected with via facebook, posted that her mom had died. It was sad to read as I remember her mother fondly and it was a bit shocking to think of someone as young as my own mom dying. But I hadn't seen the woman in more than 20 years and while I hurt for my friend in her loss, it seemed rather far removed from my own reality.
Shortly thereafter there was a terrible car accident in the dark of night at the intersection closest to our home. Three teenagers were life-flighted to the hospital while the mother of one lost her life that night. There was no alcohol involved just excessive speed and reckless driving. I knew no one involved in the accident, but heard the sirens that night and the roadside cross, about half a mile from the marker of a teen who was killed on the same road 2 years ago, is a sobering sight.
Then the weekend after Thanksgiving my parents learned that the son of a close friend was killed when he fell asleep at the wheel, driving back to college from Thanksgiving. I didn't even know the man, but because it hit my parents so hard, death seemed a step closer then.
And now, in the last 2 days, I have learned of three more deaths; the 2-year-old son of an online acquaintance who fell in the family pool, a doctor who had helped unravel some of my medical puzzle and treated me on several occassions, and now the mom of a very dear friend.
I hardly know the child's mother at all, just ache for her heartache as she faces gifts that will never be unwrapped under her tree.
But I had talked with my friend's mom, both face-to-face and over the phone, several times in the last couple of months, and suddenly she is gone. My heart is absolutely broken for my friend and there's this lump in the pit of my stomache that I can't shake away.
But my doctor's loss hits me perhaps hardest of all, for not only was I a patient OF his for quite some time, but I was also a fellow patient WITH him, just three weeks ago giving up my bed in the infusion room so that he could use it for what would end up being one of his final cancer treatments...
I know I am exhausted and sleep deprived after a week and a half of caring for family members with the flu, and that's definately impacting my emotional state at the moment. Physically I'm also struggling thanks to these relentless hives that have me more on edge than normal as well. I'm not even sure what I'm trying to accomplish with this post other than to say that my heart aches for all the pain so many are facing, and yet I am overwhelmed with the blessings of simply drawing my next breath and putting my arms around my loved ones. So if nothing else productive comes from this post, other than the easing of my own heartache by the therapy of writing, I beg of you to celebrate this moment and take time for those you love, because life is so very fragile and fleeting!
This year I've had two author friends who had brothers-in-laws hit by drunk drivers. One was killed, the other is recovering surprisingly well. But both accidents were sobering reminders that life can change in the blink of an eye.
Last month a friend from Jr. High, whom I had only recently reconnected with via facebook, posted that her mom had died. It was sad to read as I remember her mother fondly and it was a bit shocking to think of someone as young as my own mom dying. But I hadn't seen the woman in more than 20 years and while I hurt for my friend in her loss, it seemed rather far removed from my own reality.
Shortly thereafter there was a terrible car accident in the dark of night at the intersection closest to our home. Three teenagers were life-flighted to the hospital while the mother of one lost her life that night. There was no alcohol involved just excessive speed and reckless driving. I knew no one involved in the accident, but heard the sirens that night and the roadside cross, about half a mile from the marker of a teen who was killed on the same road 2 years ago, is a sobering sight.
Then the weekend after Thanksgiving my parents learned that the son of a close friend was killed when he fell asleep at the wheel, driving back to college from Thanksgiving. I didn't even know the man, but because it hit my parents so hard, death seemed a step closer then.
And now, in the last 2 days, I have learned of three more deaths; the 2-year-old son of an online acquaintance who fell in the family pool, a doctor who had helped unravel some of my medical puzzle and treated me on several occassions, and now the mom of a very dear friend.
I hardly know the child's mother at all, just ache for her heartache as she faces gifts that will never be unwrapped under her tree.
But I had talked with my friend's mom, both face-to-face and over the phone, several times in the last couple of months, and suddenly she is gone. My heart is absolutely broken for my friend and there's this lump in the pit of my stomache that I can't shake away.
But my doctor's loss hits me perhaps hardest of all, for not only was I a patient OF his for quite some time, but I was also a fellow patient WITH him, just three weeks ago giving up my bed in the infusion room so that he could use it for what would end up being one of his final cancer treatments...
I know I am exhausted and sleep deprived after a week and a half of caring for family members with the flu, and that's definately impacting my emotional state at the moment. Physically I'm also struggling thanks to these relentless hives that have me more on edge than normal as well. I'm not even sure what I'm trying to accomplish with this post other than to say that my heart aches for all the pain so many are facing, and yet I am overwhelmed with the blessings of simply drawing my next breath and putting my arms around my loved ones. So if nothing else productive comes from this post, other than the easing of my own heartache by the therapy of writing, I beg of you to celebrate this moment and take time for those you love, because life is so very fragile and fleeting!
Monday, November 23, 2009
16 down, 8 to go
I'm officially 2/3 of the way through my IVIG infusions now! I remember my doctor telling me, probably more than a year ago, that when he asks patients what one thing he has done for them that they would take with them to a desert island, most say the IG. I haven't gotten that result, and actually was about ready to throw in the towel before this last infusion because they seem to be making me feel worse rather than better...
Until yesterday. I know it's very early to really see how this one infusion will make me feel in the long-range, but when Rick picked me up from the hospital last night, for the first time I came home not feel totally and completely wrung out and done in by the infusion process. It had been a long day, about 6 hours and 3 doses of benadryl (pretreatment, then hives, then tight/sore/swelling throat) to get through the infusion, but as the saline started pumping afterwards, I actually started feeling realatively good!
I ate dinner with my family, took more benadryl and headed to bed. Rick said I flipped and flopped a lot and asked me if I had bad dreams because I had pulled the blankets all apart, but I just felt good, hard, more-restful-than-normal hard sleep. I had a really hard time waking up this morning, but have been up and going pretty well since about 9:30. I'm definately needing to crawl back in bed for a nap this afternoon, but am thankful to be functioning this well at all on a Monday!
Most of yesterday's hives have cleared up, though I've still got one patch of pretty nasty, oozy hives right next to my PICC line (we think I've developed an allergy to the skin prep treatment we have been using to keep the bandages from irritating my bandage site), that really burn and hurt. I'm quite stiff today, like the stiffness I've had in my hands since the beginning of the IVs has shifted through my whole body now, and my torso is sore, especially my lower back and abdominal area (feels rather like menstral bloating/cramping, but I had a hysterectomy a year ago, so know it's not that). Naproxen has reduced much of the pain and even a bit of my stiffness already this morning and I'm drinking a lot of fresh water to try to flush out the rest. I feel "puffy" and actually gained about 3 pounds yesterday, but am amazed that even with these things, I feel measurably better this morning than I do many weeks even several days after infusion. I am hopeful that maybe this last third of treatment will let me begin to see why so many other patients have found such benefit from IG!
Random Notes to Share:
- If you have been reading my blog for a while, you know I have a special place in my heart for identical twin girls, Addi and Cassi Hemple. These sweet 5-year-olds right here in Reno fight Niemann Pick Type C disease, a fatal cellular cholesterol disease that is often referred to as the “Childhood Alzheimer’s” and have lost many skills already, including the ability to talk. What makes the girls' case even more unique is that they have been fighting other unidentified health issues since 2005. Their mom, Chris, has maintained for a long time that she believed there to be an underlying issue with their immune systems, not directly related to the Niemann Pick Type C. Amazingly enough, these girls also both tested positive for XMRV and their non-Niemann Pick C symptoms are all consistant with neuro-immune illness. When I began following their story a few years ago, I had no idea that our worlds would end up intersecting on such a personal level!!! Read more about Chris' theory of Cholesterol's roll in XMRV.
- Yesterday, during the infusion, I was watching an interview on Fox and heard about the Manhattan Declaration. This "Historic Declaration on Christian Conscience" has been written by more than 125 Orthodox, Catholic & Evangelical Leaders and has already been signed by more than 50,000 supporters since its release on Friday! I want to take more time to really explore what this document is all about, but as I understand it, the basic premise seems to be a group of Christians who are committing themselves to fight for three basic principles - sanctity of human life, dignity of marriage as the conjugal union of husband and wife, rights of conscience and religious liberty - and coveneting themselves to uphold these areas even if/when our government makes laws to the contrary. I believe the intent is a promising to go as far as civil disobedience in the effort to obey God rather than man, if our government should make it come to that. Very interesting!
- I will be placing a Gurrlie Girl jewelry order Tuesday, Dec. 1. I have yet to make a final decision, but there is a very real possibility that this may be the final order I place as I am considering letting my GG consultantship expire. If you have had your eye on something and been holding off on ordering, you might want to consider Christmas shopping now. Feel free to email me with order questions - jsaake AT yahoo DOT com. :)
- Affordable Mineral Makeup™ has become even more affordable! In response to current economic struggles we all face, the owner of AMM has reduced prices so that all 5g sifter jars are now priced under $7, even our exclusive lines!
- Not sure if I will get a chance to post again later this week, so I close by asking you, "What are you thankful for?" My list is long, ranging from God's grace in salvation to my miracle family to employment for my husband and good insurance and medical care. That's just scratching the surface; I am truly blessed! I would like to hear from you about your blessings, even through the struggles, as well. Please share in the comments field here!
Until yesterday. I know it's very early to really see how this one infusion will make me feel in the long-range, but when Rick picked me up from the hospital last night, for the first time I came home not feel totally and completely wrung out and done in by the infusion process. It had been a long day, about 6 hours and 3 doses of benadryl (pretreatment, then hives, then tight/sore/swelling throat) to get through the infusion, but as the saline started pumping afterwards, I actually started feeling realatively good!
I ate dinner with my family, took more benadryl and headed to bed. Rick said I flipped and flopped a lot and asked me if I had bad dreams because I had pulled the blankets all apart, but I just felt good, hard, more-restful-than-normal hard sleep. I had a really hard time waking up this morning, but have been up and going pretty well since about 9:30. I'm definately needing to crawl back in bed for a nap this afternoon, but am thankful to be functioning this well at all on a Monday!
Most of yesterday's hives have cleared up, though I've still got one patch of pretty nasty, oozy hives right next to my PICC line (we think I've developed an allergy to the skin prep treatment we have been using to keep the bandages from irritating my bandage site), that really burn and hurt. I'm quite stiff today, like the stiffness I've had in my hands since the beginning of the IVs has shifted through my whole body now, and my torso is sore, especially my lower back and abdominal area (feels rather like menstral bloating/cramping, but I had a hysterectomy a year ago, so know it's not that). Naproxen has reduced much of the pain and even a bit of my stiffness already this morning and I'm drinking a lot of fresh water to try to flush out the rest. I feel "puffy" and actually gained about 3 pounds yesterday, but am amazed that even with these things, I feel measurably better this morning than I do many weeks even several days after infusion. I am hopeful that maybe this last third of treatment will let me begin to see why so many other patients have found such benefit from IG!
Random Notes to Share:
- If you have been reading my blog for a while, you know I have a special place in my heart for identical twin girls, Addi and Cassi Hemple. These sweet 5-year-olds right here in Reno fight Niemann Pick Type C disease, a fatal cellular cholesterol disease that is often referred to as the “Childhood Alzheimer’s” and have lost many skills already, including the ability to talk. What makes the girls' case even more unique is that they have been fighting other unidentified health issues since 2005. Their mom, Chris, has maintained for a long time that she believed there to be an underlying issue with their immune systems, not directly related to the Niemann Pick Type C. Amazingly enough, these girls also both tested positive for XMRV and their non-Niemann Pick C symptoms are all consistant with neuro-immune illness. When I began following their story a few years ago, I had no idea that our worlds would end up intersecting on such a personal level!!! Read more about Chris' theory of Cholesterol's roll in XMRV.
- Yesterday, during the infusion, I was watching an interview on Fox and heard about the Manhattan Declaration. This "Historic Declaration on Christian Conscience" has been written by more than 125 Orthodox, Catholic & Evangelical Leaders and has already been signed by more than 50,000 supporters since its release on Friday! I want to take more time to really explore what this document is all about, but as I understand it, the basic premise seems to be a group of Christians who are committing themselves to fight for three basic principles - sanctity of human life, dignity of marriage as the conjugal union of husband and wife, rights of conscience and religious liberty - and coveneting themselves to uphold these areas even if/when our government makes laws to the contrary. I believe the intent is a promising to go as far as civil disobedience in the effort to obey God rather than man, if our government should make it come to that. Very interesting!
- I will be placing a Gurrlie Girl jewelry order Tuesday, Dec. 1. I have yet to make a final decision, but there is a very real possibility that this may be the final order I place as I am considering letting my GG consultantship expire. If you have had your eye on something and been holding off on ordering, you might want to consider Christmas shopping now. Feel free to email me with order questions - jsaake AT yahoo DOT com. :)
- Affordable Mineral Makeup™ has become even more affordable! In response to current economic struggles we all face, the owner of AMM has reduced prices so that all 5g sifter jars are now priced under $7, even our exclusive lines!
- Not sure if I will get a chance to post again later this week, so I close by asking you, "What are you thankful for?" My list is long, ranging from God's grace in salvation to my miracle family to employment for my husband and good insurance and medical care. That's just scratching the surface; I am truly blessed! I would like to hear from you about your blessings, even through the struggles, as well. Please share in the comments field here!
Wednesday, September 2, 2009
Such a Vivid Dream
I hadn't even been thinking of her much lately, certainly not focusing on dates. It snuck up on me quite by surprise this year, Noel's due date, Sept. 2. It was "Labor Day" that year that she was due, the day I was to have been "in labor". Since all my babies have come early, she probably whould have been an August baby instead...
I guess a mother's heart just can't forget, try as I might. For last night in my dreams I held a very vidid conversation with a friend all about Noel and how she was "about to turn 14". I didn't even realize until late in the day that TODAY was Sept. 2 nor connect that the dream was about this very date.
I know I'm rambling, but I can't go to sleep without at least saying, "Happy birthday, my sweet child. You were the first to touch my womb and Mommy will always hold a special place in my heart for you. I miss you even still and look forward to finally wrapping my arms around you and getting to know you some day in Heaven."
What would it be like to have a teenage daughter, a young woman on the verge of becoming an adult, in our home today? This wasn't God's perfect plan and I honestly can't imagine such a different reality than the one we live right now. But every now and then I can picture her and wonder about what could have been. Needing to focus once again on God's beautiful plan for our family just as He chose to build it rather than getting caught up in daydreams (or night dreams) about what can never be.
I guess a mother's heart just can't forget, try as I might. For last night in my dreams I held a very vidid conversation with a friend all about Noel and how she was "about to turn 14". I didn't even realize until late in the day that TODAY was Sept. 2 nor connect that the dream was about this very date.
I know I'm rambling, but I can't go to sleep without at least saying, "Happy birthday, my sweet child. You were the first to touch my womb and Mommy will always hold a special place in my heart for you. I miss you even still and look forward to finally wrapping my arms around you and getting to know you some day in Heaven."
What would it be like to have a teenage daughter, a young woman on the verge of becoming an adult, in our home today? This wasn't God's perfect plan and I honestly can't imagine such a different reality than the one we live right now. But every now and then I can picture her and wonder about what could have been. Needing to focus once again on God's beautiful plan for our family just as He chose to build it rather than getting caught up in daydreams (or night dreams) about what can never be.
Wednesday, August 19, 2009
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