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| JrnniferSaake.com |
It's only been a 6-year process (don't ask), but I am so very excited to unveil JenniferSaake.com tonight. It's finally live!
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| JenniferSaake.com |
Go enjoy. :)
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| JenniferSaake.com |
Showing posts with label chronic illness. Show all posts
Showing posts with label chronic illness. Show all posts
Sunday, March 18, 2018
Wednesday, September 27, 2017
Why Given Me A Thorn Blog Was Shut Down
Back in May I disabled this blog for several months as I prayed about what to do with it. I had just undergone a solid week of intensive counseling and realized my lifetime mindset, the focus of this blog, had been more about my thorns than about the Rose of Sharron, Jesus Christ. Yes, he has been my Lord since childhood, yet I was more prone to focus on the crashing waves and trying to live my life in a way that would glorify God through the pain, rather than with my eyes firmly set on Jesus Himself and let Him unfold His grace through a life lived for Him, regardless of circumstances. Perhaps this seems like a minor semantical change, but it is a profound heart shift in me!
Starting with the very first day in my week in ministry (and continuing to this day), as I experienced significant and unexpected physical healing in several areas, I was so overwhelmed with God's goodness that I didn't have a heart for this blog anymore. If fact, the "Given Me A Thorn" book title is no longer in my plans at all. Yes, I still plan to write address the times we ask for healing and it does not come (as is still my case in some significant areas), but my title, focus, and perspective has simply been changed by the reality that I am defined by Jesus not by my thorns.
I am restoring public viewing of this blog as, within the past week, I have has three needs for public access to some of the health resources previously posted here. The "flavor" of this blog will remain focused on Christians and chronic illness, yet my tone will likely be much more in keeping with my current book title, Harvesting Hope From Heartache.
Please "like" my "Jennifer Saake, author" page at www.facebook.com/HarvestingHope for ongoing updates on all my writing news. :) I need a few thousand likes to demonstate "platform" to potential book publishers and currently only have a few hundred, so please help and pass the need along in your illness support circles!
Starting with the very first day in my week in ministry (and continuing to this day), as I experienced significant and unexpected physical healing in several areas, I was so overwhelmed with God's goodness that I didn't have a heart for this blog anymore. If fact, the "Given Me A Thorn" book title is no longer in my plans at all. Yes, I still plan to write address the times we ask for healing and it does not come (as is still my case in some significant areas), but my title, focus, and perspective has simply been changed by the reality that I am defined by Jesus not by my thorns.
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| Found on Facebook. Would dearly like to credit the artist if anyone can provide the source, please? Reminds me of the Butterflies and Battle Boots article I wrote. |
I am restoring public viewing of this blog as, within the past week, I have has three needs for public access to some of the health resources previously posted here. The "flavor" of this blog will remain focused on Christians and chronic illness, yet my tone will likely be much more in keeping with my current book title, Harvesting Hope From Heartache.
Please "like" my "Jennifer Saake, author" page at www.facebook.com/HarvestingHope for ongoing updates on all my writing news. :) I need a few thousand likes to demonstate "platform" to potential book publishers and currently only have a few hundred, so please help and pass the need along in your illness support circles!
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| Why I Wear Combat Boots |
Wednesday, September 28, 2016
HashTag ThisIsChronicIllness
It is national Invisible Illness Awareness Week.
I was prompted to share raw footage of my morning:
After watching this clever, poignant and entertaining clip yesterday:
An hour later, I recorded Part 2 of my morning:
As a video link, in words, whatever, please share your experience with hidden illness in the comments!
After watching this clever, poignant and entertaining clip yesterday:
An hour later, I recorded Part 2 of my morning:
As a video link, in words, whatever, please share your experience with hidden illness in the comments!
Tuesday, December 8, 2015
Book Give-away!
Sorry the cover is backwards. My laptop takes mirror image photos! If there is a way to "flip" them, I sure have never discovered that feature. Keep reading to learn how to enter (once or lots of times)to win a free copy of this book!
Extended Entry Deadline: To enter, please leave a comment (including a valid email address to contact you if you win) on this post prior to Christmas Day, 2015! I'll send out a notification email and post the winner here by Dec.28. You will have 48 hours to respond with your mailing address or I'll need to select a new winner. That's it. EASY. (Keep reading for more chances to enter.)
You can see my dear friend Shelly Benoit Hendricks's correct book cover for her 30 devotional collection for newly diagnosed patients, "You're Chronically Ill...So Now What?" at http://amzn.to/21Mp2T7 or visit the You're Chronically Ill. Now What? facebook page at https://www.facebook.com/YoureChronicallyIllNowWhat.
For additional enteritis, please share this post widely, on Facebook, pinterest, twitter, your blog, wherever. Leave an additional post each time you do!
Sunday, October 4, 2015
When Balloons Are Scary
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| Picture via Google Images. |
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| Picture via Google Images. |
I was only touch reactive most of my life. I never had airborne issues until about 5 or 6 years back when a kids school craft sent me to the hospital. I was taking harsh medication at the time that was bringing rapid changes to my immune system and I think that's what threw the switch to severer reaction.
About our church:
Church leadership is aware and has been beautifully accommodating to us. It is a large church. Two of the three pastors have been gone this week (hospital and death in family) and this one just sort of slipped in under the radar. I imagine it was someone's birthday in a Sunday School class. Nothing malicious and they would have been horrified to learn the ripple effects to our family, I'm sure! I'm just ever-so-thankful that we got there at the exact time to see and avoid the danger!
To the question, "How do shop?? Most stores nowadays sell balloons."
I do as much shopping as I can online. Stores that sell them, as long as they aren't inflated and are in a package, I'm OK as long as I don't handle or hang out by the packages. Last year, I scared a friend when we were in the party supply department enough we had to do an impromptu overview of where to find the Epi-pen I always carry, etc. I ALWAYS carry Benadryl too, and pop them liberally, at the slightest first signs of possible exposure. Most places only have the mylar (foil) balloons inflated in the stores now (at least to sell, unfortunately, you never know when/where you might run into them in a display). If a stores sells inflated latex balloons, I leave and don't go back!
I haven't even met my son's school teacher this year (we do all our communication via email) because his school uses balloons in crafts. Before going to anyone's house, party or event I call first and don't go if they have recently had balloons or rubber gloves on premises. We also have to call any restaurant before we go to make sure there are no balloons.
Fortunately, most kitchens now use vinyl gloves so food contamination is rare (I just have to watch fancy stuff like chocolate shell bowl formed around a balloon), but have had to get up and leave in the middle of "safe" restaurant meals before if other guests bring in balloons, like for a birthday party. I can only use one of the two main medical health care systems in town because they a relatively latex-free while the other hospital may still use latex in gloves or some of their other supplies. I also have to watch rubber bands (not allowed in our house!) and several other every-day items, but unless I touch them or they "snap" near me, most of those things don't release enough air borne particle to significantly impact me unless I touch them. New items like tires or certain paints in an enclosed area can make me reactive until they have aged and settled enough (can take weeks or months) that I have to be really careful in things like walking into Sam's club (they have a big automotive area including tires, right at the front entrance).
Also, it depends on the quality and manufacturing process of individual balloons. As a general rule, the cheeper a balloon, the lower the quality of material and more readily it sheds latex particles into the air. I have actually been around very high quality balloons without reaction. But typically folks grab the least expensive (a.k.a. most dangerous as far as latex shedding goes) balloons they can buy for party decorations, crafts, pranks, etc! And please, NEVER pop any kind of latex balloon anywhere near me - fantastic way to spread a ton of allergen-particles far, wide and FAST!
A friend replied:
Thankful that you were able to avoid a dangerous situation! My sister has a latex allergy too but only if she touches it. I'm also glad that you posted this. Helps to better understand why hospitals near us do not allow any balloons unless bought in their gift shops (all latex free).
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| Short, very helpful article! Please take 2 minutes to read! http://invisibleillnessweek.com/2015/09/24/now-i-know-better/ |
Original post:
We missed church today. Got up, ready, and even into the church parking lot, only to see someone carrying balloons into the church. (I am HIGHLY reactive to LATEX and even going into a room that has balloons in it could send me to a hospital via ambulance!) Our student driver didn't even get to park. Rick simply said, "We are not going in there!" and directed him right through the parking lot and back onto the main road.
I was disappointed as I haven't been out of the house in a week, but just getting up and ready, a quick stop for bagels on the way, then picking up a couple items from the store on our way home, I came home (back home by 9:30!) and slept HARD for over 2 hours! (Sad that I slept right through the internet feed of our services so I didn't even get to see those!)
Guess I'm not bounced back much from surgery yet. Counting it God's grace that we pulled into the parking lot at the exact time the balloons were being taken into the building so I didn't encounter another allergic reaction in my already stressed body!
#MyInvisibleFight #InvisibleFight #IIWK #IIWK15 #LatexAlergy#WhenBalloonsAreScary #CrazyBody
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| Picture via Google Images. |
Friday, May 1, 2015
Round 2
I seem to have picked up at least two different nasty and heavy-duty viruses this spring, triggering the reactivation of ME/CFS (previously known as Chronic Fatigue Immune Deficiency Syndrome), that I battled for over 20 years, but has been in remission for over 3 years, since before my strokes.
I haven't said anything here yet because I hoped this relapse would be short-lived and not worth mention. Plus, putting it is writing "makes it real" and I can no longer pretend it isn't happening. It has gone on long enough, I have enough medical confirmation and symptoms, that it looks like we are in for another battle. I have been on anti-viral medications for a few weeks now (out of an anticipated 6 month course of treatment) and, other than needing mega amounts of sleep, think the medicine may actually be helping a bit already!
I was in and out of the local emergency room for tummy pain (that may or may not be related to these viruses), my appendix, the ovarian cysts they found on my stroked side that could have been referring pain to my "good" side, some combination of any/all of the above, or something else not yet discovered, (no one is totally sure), twice within 3 1/2 weeks, but am on day 7 of a relatively pain-free or at least low-tummy-pain streak. I was pretty feverish and have slept most of the day yesterday, but no pain!
We still don't know the reasons for the tummy stuff. That it is gone right now makes me wonder if the anti-viral medication is addressing the root cause, but we simply do not know. My next regular doctor's appointment is scheduled for about the 3rd week of May, so that if it is a recurrent feminine issue, we hope to catch it cyclically. Because of the internal stroke paralysis, I do not seem capable of properly transmitting pain signals, so I am leaving my doctors with quite the guessing game right now!
I haven't said anything here yet because I hoped this relapse would be short-lived and not worth mention. Plus, putting it is writing "makes it real" and I can no longer pretend it isn't happening. It has gone on long enough, I have enough medical confirmation and symptoms, that it looks like we are in for another battle. I have been on anti-viral medications for a few weeks now (out of an anticipated 6 month course of treatment) and, other than needing mega amounts of sleep, think the medicine may actually be helping a bit already!
I was in and out of the local emergency room for tummy pain (that may or may not be related to these viruses), my appendix, the ovarian cysts they found on my stroked side that could have been referring pain to my "good" side, some combination of any/all of the above, or something else not yet discovered, (no one is totally sure), twice within 3 1/2 weeks, but am on day 7 of a relatively pain-free or at least low-tummy-pain streak. I was pretty feverish and have slept most of the day yesterday, but no pain!
We still don't know the reasons for the tummy stuff. That it is gone right now makes me wonder if the anti-viral medication is addressing the root cause, but we simply do not know. My next regular doctor's appointment is scheduled for about the 3rd week of May, so that if it is a recurrent feminine issue, we hope to catch it cyclically. Because of the internal stroke paralysis, I do not seem capable of properly transmitting pain signals, so I am leaving my doctors with quite the guessing game right now!
Saturday, March 8, 2014
What NOT to Say
Here's a helpful article: 12 Things You Should Never Say to A Person With A Chronic Health Condition
{God} takes no pleasure in the strength of a horse or in human might. No, the Lord's delight is in those who fear Him, those who put their hope in His unfailing love. Psalm 147:10-11
{God} takes no pleasure in the strength of a horse or in human might. No, the Lord's delight is in those who fear Him, those who put their hope in His unfailing love. Psalm 147:10-11
Friday, November 22, 2013
Tuesday, September 10, 2013
Invisible Illness Awareness Week
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| From Facebook ;) |
Welcome to all new visitors due to this chat! If you are looking for my Given Me a Thorn Facebook page, please take a moment to look around here, read some history and links from the sidebar, then head to https://www.facebook.com/GivenMeaThorn. :)
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| From Facebook |
So why did I not post in advance? Let simply say I have time management issues. ;) I was busy updating my stroke description until about 20 minutes before we went live, then I still had to review all my interview questions (that I've had since last night, but didn't bother even opening until 10:40 for an 11am chat!
From Facebook
Did you know that one in two people suffers from some kind of hidden disability. So if it is not you, there is know doubt that a friend or family member is living with an invisible illness! I give an example of hidden disability here. Have you read The Spoon Theory yet? It may really help you understand!
Facebook
It was discussed on chat today, that if you want to become more public about your invisible illness, you might want to find something that is attention grabber, that invites conversation, and make it your trademark so that people will ask you about the unusual item, giving you a chance to share about your experiences. One lady says she daily wears a spoon-shaped pin so that people wonder and ask about. I wear combat boots. :) Do you have an idea to suggest of an every-day item to draw attention to or explain your illness? Please share!
Wednesday, July 17, 2013
Allergic to The Sun
I have a friend whose daughter has fairly recently developed Photo-Sensitivity. Because I had questions and think others here might benefit from the information, here is a list of medications know to potentially trigger this problem.
Edited to add an except from another blog post where I wrote about how this applies to my own story.
...what I have simply referred to as "hives" ever since I got home from the hospital, is sort of like hives in that it seems to be an allergic reaction, likely triggered into activation by one or some of all the medications I received in the hospital (no idea what one or ones at this point), but not to any typical triggers, but now a reaction to light, specifically the sun, itself. So, almost my entire left (stroked) arm is photo-sensitive to some degree or another. One area of my right, just above and below the elbow joint, is prone to this reaction as well, but it seems to be not anywhere else on my body right now (maybe my neck/face on a very low level).
I finally began to question my reactions when a friend explained her daughter's whole-body pretty severe photo-sensitivity to me and I realized that my hives always happened when I either had direct sun exposure or was using my bright reading light at bedtime. When riding in the car last week, we turned a corner onto a freeway on-ramp and when the sun came through the windshield and hit my left arm, the entire arm turn bright red and got itchy instantly. By the time we got up onto the freeway, I already had developed about half a dozen tiny, whit blisters that were raw and bleeding. This was the fastest and most direct reaction to the sun I had ever experienced, and thankfully not how swiftly most of my reactions have progressed!
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| From Facebook |
...what I have simply referred to as "hives" ever since I got home from the hospital, is sort of like hives in that it seems to be an allergic reaction, likely triggered into activation by one or some of all the medications I received in the hospital (no idea what one or ones at this point), but not to any typical triggers, but now a reaction to light, specifically the sun, itself. So, almost my entire left (stroked) arm is photo-sensitive to some degree or another. One area of my right, just above and below the elbow joint, is prone to this reaction as well, but it seems to be not anywhere else on my body right now (maybe my neck/face on a very low level).
I finally began to question my reactions when a friend explained her daughter's whole-body pretty severe photo-sensitivity to me and I realized that my hives always happened when I either had direct sun exposure or was using my bright reading light at bedtime. When riding in the car last week, we turned a corner onto a freeway on-ramp and when the sun came through the windshield and hit my left arm, the entire arm turn bright red and got itchy instantly. By the time we got up onto the freeway, I already had developed about half a dozen tiny, whit blisters that were raw and bleeding. This was the fastest and most direct reaction to the sun I had ever experienced, and thankfully not how swiftly most of my reactions have progressed!
Thursday, May 2, 2013
HypoPARA
I've been researching my newest diagnosis this week. I was rather discouraged this week to visit the HypoPARAthyroidism (HypoPARA) Association website to read, "By now you realize that you have been diagnosed with a very rare
disorder – so rare that you have had trouble finding out what it even is
and how to deal with it" on their "new to diagnosis" page.
As if I weren't already enough of a medical freak? *Sigh*
In times like this, I am especially glad that I haven't taken God by surprise, that He's got a plan, and that this world is not my home!
Update, posted to my stroke blog, July, 2013:
Something else I still need to talk over with my endocrinologist about is my insistence that my hypoPARAthyroid issues are somehow stroke related. None of my doctors could see how, and yet I know my body too well to think the timing is just all coincidental. Doing research within the last couple of weeks, I found the potential link between repressed PTH (ParaThyroid Hormone) and Aspirin (I take 2, low dose, per day to keep my blood thin enough to not clot the surgery site of my artery). I brought this possibility up to my neurologist, and while we both agree that the Asprin therapy remains critical and is not optional for me, he does believe there is real merit to my theory that this is the cause of my PTH repression. I will talk over this idea with my endocrinologist at my next appointment in September.
As if I weren't already enough of a medical freak? *Sigh*
In times like this, I am especially glad that I haven't taken God by surprise, that He's got a plan, and that this world is not my home!
Update, posted to my stroke blog, July, 2013:
Something else I still need to talk over with my endocrinologist about is my insistence that my hypoPARAthyroid issues are somehow stroke related. None of my doctors could see how, and yet I know my body too well to think the timing is just all coincidental. Doing research within the last couple of weeks, I found the potential link between repressed PTH (ParaThyroid Hormone) and Aspirin (I take 2, low dose, per day to keep my blood thin enough to not clot the surgery site of my artery). I brought this possibility up to my neurologist, and while we both agree that the Asprin therapy remains critical and is not optional for me, he does believe there is real merit to my theory that this is the cause of my PTH repression. I will talk over this idea with my endocrinologist at my next appointment in September.
Friday, April 19, 2013
New and Rare
Well, I thought I was out of the world of "chronic illness" in the sense that over two decades of ME/CFS (chronic fatigue syndrome) seems to be mostly behind me, or at least about 90% in remission for over a year now.
I knew I was still dealing with numerous chronic disabilities and pain conditions in the wake of my strokes (several fairly significant ones listed at http://strokeofgrace.blogspot.com if you care to read), but I thought that was about it.
Nope, I was just diagnosed this week with a new rare disease, hypoparathyroidism. (I didn't know until this week that we even had parathyroid glads, about 4 of them, rice-sized, attached to the back side of the thyroid gland.) Apparently it is a pretty big deal when they don't work properly, and that mine are under-productive in the PTH hormone, answers so many medical questions. Now if only there were an easy fix... I've already had one lovely allergic reaction to an attempted intervention this week, so we are regrouping and my doctor is coming up with a new battle plan. It will likely take months or years to find a workable solution.
We honestly don't know what caused me to face this ailment. It typically happens in conjunction with thyroid issues, or more commonly, as a result of the removal of these tiny glands in thyroid surgery, something that I have not undergone. I personally believe the level of parathyroid imbalance that we are seeing, that my doctor terms "remarkable," is likely stroke-related (or may have been a mild issue for years, even possibly since birth, but certainly seems severely aggravated into much more significant imbalance by the strokes), but both the kinds of strokes and the type of parathyroid issues we are finding are each so rare, in and of themselves, that no one has yet been able to confirm my theory that the parathyroid issues have developed or intensified due to the strokes. (See update note at the end of page for one possible reason.)
Thankfully God knows, has it all in His control, none of this takes Him my any kind of surprise, and we can trust Him to lead us each step of the way in looking toward new answers.
Update, posted to my stroke blog, July, 2013:
I need to talk over with my endocrinologist about my insistence that my hypoPARAthyroid issues are somehow stroke related. None of my doctors could see how, and yet I know my body too well to think the timing is just all coincidental. Doing research within the last couple of weeks, I found the potential link between repressed PTH (ParaThyroid Hormone) and Aspirin (I take 2, low dose, per day to keep my blood thin enough to not clot the surgery site of my artery). I brought this possibility up to my neurologist, and while we both agree that the Asprin therapy remains critical and is not optional for me, he does believe there is real merit to my theory that this is the cause of my PTH repression. I will talk over this idea with my endocrinologist at my next appointment in September.
I knew I was still dealing with numerous chronic disabilities and pain conditions in the wake of my strokes (several fairly significant ones listed at http://strokeofgrace.blogspot.com if you care to read), but I thought that was about it.
Nope, I was just diagnosed this week with a new rare disease, hypoparathyroidism. (I didn't know until this week that we even had parathyroid glads, about 4 of them, rice-sized, attached to the back side of the thyroid gland.) Apparently it is a pretty big deal when they don't work properly, and that mine are under-productive in the PTH hormone, answers so many medical questions. Now if only there were an easy fix... I've already had one lovely allergic reaction to an attempted intervention this week, so we are regrouping and my doctor is coming up with a new battle plan. It will likely take months or years to find a workable solution.
We honestly don't know what caused me to face this ailment. It typically happens in conjunction with thyroid issues, or more commonly, as a result of the removal of these tiny glands in thyroid surgery, something that I have not undergone. I personally believe the level of parathyroid imbalance that we are seeing, that my doctor terms "remarkable," is likely stroke-related (or may have been a mild issue for years, even possibly since birth, but certainly seems severely aggravated into much more significant imbalance by the strokes), but both the kinds of strokes and the type of parathyroid issues we are finding are each so rare, in and of themselves, that no one has yet been able to confirm my theory that the parathyroid issues have developed or intensified due to the strokes. (See update note at the end of page for one possible reason.)
Thankfully God knows, has it all in His control, none of this takes Him my any kind of surprise, and we can trust Him to lead us each step of the way in looking toward new answers.
I need to talk over with my endocrinologist about my insistence that my hypoPARAthyroid issues are somehow stroke related. None of my doctors could see how, and yet I know my body too well to think the timing is just all coincidental. Doing research within the last couple of weeks, I found the potential link between repressed PTH (ParaThyroid Hormone) and Aspirin (I take 2, low dose, per day to keep my blood thin enough to not clot the surgery site of my artery). I brought this possibility up to my neurologist, and while we both agree that the Asprin therapy remains critical and is not optional for me, he does believe there is real merit to my theory that this is the cause of my PTH repression. I will talk over this idea with my endocrinologist at my next appointment in September.
Tuesday, September 13, 2011
Focus
I almost tossed this picture. The rose is all out of focus! In fact, the only thing my eye can clearly make out is the background, and look at all those nasty thorns!
Oh wait. Isn't this a perfect picture of my life sometimes? So often I miss out on the amazing beauty and blessings right before me because I'm focusing on the annoying, the irritating, the ugly, the painful.
Lord, please help me to remember that even when you give thorns, they are always accompanied by gifts of grace. Sometimes I may have to work harder to adjust my focus than other times, but when I look for your blessings, they are always there.
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Thank you to my sweet friend Abby of Mavora Art and Design who took this idea and made it into my beautiful new header! Feel free to visit her website or follow her on Facebook.
Oh wait. Isn't this a perfect picture of my life sometimes? So often I miss out on the amazing beauty and blessings right before me because I'm focusing on the annoying, the irritating, the ugly, the painful.
Lord, please help me to remember that even when you give thorns, they are always accompanied by gifts of grace. Sometimes I may have to work harder to adjust my focus than other times, but when I look for your blessings, they are always there.
I was given the gift of a handicap to keep me in constant touch with my limitations. Satan's angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first I didn't think of it as a gift, and begged God to remove it. Three times I did that, and then he told me,
My grace is enough; it's all you need.
My strength comes into its own in your weakness.
Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ's strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become.
- 2 Corinthians 12:7b-10 (The Message)
Thank you to my sweet friend Abby of Mavora Art and Design who took this idea and made it into my beautiful new header! Feel free to visit her website or follow her on Facebook.
Monday, September 12, 2011
National Invisible Chronic Illness Week
Welcome to National Invisible Chronic Illness Week (Invisible Illness Week, or IIW for short)! Please join me in watching this video produced by my dear friend, Lisa Copen, founder of both Rest Ministries and IIW.
How will you observe IIW? What can you do to spread awareness, comfort, or simply snuggle into the resources and reality or hope and support extended to you?
Monday, August 8, 2011
Myalgic Encephalomyelitis: International Consensus Criteria
Could "Chronic Fatigue Syndrome" finally be loosing its ambiguous "fatigue" label? We can only hope that this is a step in the right direction!
Myalgic Encephalomyelitis: International Consensus Criteria - Carruthers - Journal of Internal Medicine - Wiley Online Library
Myalgic Encephalomyelitis: International Consensus Criteria - Carruthers - Journal of Internal Medicine - Wiley Online Library
Friday, August 5, 2011
Being Whole
I am in pain, sick, frail, homebound, bedbound, without great possibility or potential in my future.
In all of that, I am whole. I am complete. I am exactly what God made me to be in the exact time He created me to be it...
To read more reflections on what it means to be "whole" and how we can get there even in the midst of illness (not to mention validation for putting up with all those who tell us that wholeness will come through their sure cures), visit Gitz today and read about Whole.
Sunday, July 24, 2011
Fibromyalgia
I try not to post identical (or even highly similar) content to two or more of my blogs, but since today's post over at InfertilityMom is more health-related than not, I thought my readers here at GivenMeaThorn might appreciate it as well. For the few of you who happen to subscribe to both, thank you for your patient indulgence in my cross-posting. :)
While it's my personal blog rather than my primary health blog, I am honored to learn today that InfertilityMom has been selected as #22 in the top 100 blogs at 100 Best Sites for Fibromyalgia or Chronic Fatigue Syndrome Information. Thank you! :)
My mom's just completed her 2nd week at week at FibroInnovations. She's sore from all the work they are doing on her, but the results have already been more than we had dared to hope, and she still has another 10 weeks of on site treatment to go before several months of at-home follow-up. After basically falling into this treatment in a way that can only be described as Providential, it truly seems that it is an answer to our prayers for her after over 20 years of pain! Here she is with Dr. Kingston. I will admit that our family was highly skeptical about this program in the beginning, after too many years of "sure cures," but hearing the hope in her voice now makes me feel like this really is going to be a life-altering change for the positive for her.
Speaking of hope and life-altering changes, will you help me keep fighting for change by using your facebook account to join me in daily voting for the Whittemore Peterson Institute? If they can hold onto their current #1 spot in the Pacific region through August 27, they will win $100,000 of desperately needed research funding. If we could move them up from their current 6th place (contest-wide) into first there as well, they would be awarded $250,000. Voting will only take moments from your day and every vote counts! You can learn more about the importance of the Whittemore Peterson Institute in my life by reading back through my many posts on XMRV.
While it's my personal blog rather than my primary health blog, I am honored to learn today that InfertilityMom has been selected as #22 in the top 100 blogs at 100 Best Sites for Fibromyalgia or Chronic Fatigue Syndrome Information. Thank you! :)
My mom's just completed her 2nd week at week at FibroInnovations. She's sore from all the work they are doing on her, but the results have already been more than we had dared to hope, and she still has another 10 weeks of on site treatment to go before several months of at-home follow-up. After basically falling into this treatment in a way that can only be described as Providential, it truly seems that it is an answer to our prayers for her after over 20 years of pain! Here she is with Dr. Kingston. I will admit that our family was highly skeptical about this program in the beginning, after too many years of "sure cures," but hearing the hope in her voice now makes me feel like this really is going to be a life-altering change for the positive for her.
Speaking of hope and life-altering changes, will you help me keep fighting for change by using your facebook account to join me in daily voting for the Whittemore Peterson Institute? If they can hold onto their current #1 spot in the Pacific region through August 27, they will win $100,000 of desperately needed research funding. If we could move them up from their current 6th place (contest-wide) into first there as well, they would be awarded $250,000. Voting will only take moments from your day and every vote counts! You can learn more about the importance of the Whittemore Peterson Institute in my life by reading back through my many posts on XMRV.
Saturday, May 21, 2011
Easy Activism
Did you know that 30 seconds of your time could make a $500,000 difference?
If you have a Facebook account (or know someone who does, or you are considering getting one), please keep reading! If you followed this blog very long at all, you've heard me mention the Whittemore Peterson Institute many times. I am so very thankful for this research organization and the hope they bring to not only me personally, but to millions with M.E., CFS, Fibromyalgia, Lyme disease, Gulf War Illness, a-typical MS, Autism, and more.
The Whittemore Peterson Institute (WPI) is 1 out of 100 charities that won a $25,000.00 grant during the first round of Chase Community Giving. Now, WPI is competing for a $500,000.00 grant, and you can help! Please cast your vote, ask your Facebook friends to vote, and spread the word about the important work of WPI. If you have a Facebook account, please cast your vote for WPI by following the instructions below through May 25th at 9 pm PST. (Just under 4 days left!)
STEP-BY-STEP Instructions:
1. From your Facebook page, go to Chase Community Giving: http://www.facebook.com/ChaseCommunityGiving.
2. "Like" Chase Community Giving by clicking on the "Like" button.
3. Now search for Whittemore Peterson Institute for Neuro-Immune Disease.
4. Cast your vote for WPI by clicking the "Vote Now!" button.
5. Please remember our neuro-immune disease community and share in the Love and Giving by voting for other organizations who speak to your heart -- you can vote for up to 5 organizations per Facebook account.
CHASE COMMUNITY GIVING: BIG IDEA
http://www.wpinstitute.org/help/index.html#chasegiving
If you have a Facebook account (or know someone who does, or you are considering getting one), please keep reading! If you followed this blog very long at all, you've heard me mention the Whittemore Peterson Institute many times. I am so very thankful for this research organization and the hope they bring to not only me personally, but to millions with M.E., CFS, Fibromyalgia, Lyme disease, Gulf War Illness, a-typical MS, Autism, and more.
The Whittemore Peterson Institute (WPI) is 1 out of 100 charities that won a $25,000.00 grant during the first round of Chase Community Giving. Now, WPI is competing for a $500,000.00 grant, and you can help! Please cast your vote, ask your Facebook friends to vote, and spread the word about the important work of WPI. If you have a Facebook account, please cast your vote for WPI by following the instructions below through May 25th at 9 pm PST. (Just under 4 days left!)
STEP-BY-STEP Instructions:
1. From your Facebook page, go to Chase Community Giving: http://www.facebook.com/ChaseCommunityGiving.
2. "Like" Chase Community Giving by clicking on the "Like" button.
3. Now search for Whittemore Peterson Institute for Neuro-Immune Disease.
4. Cast your vote for WPI by clicking the "Vote Now!" button.
5. Please remember our neuro-immune disease community and share in the Love and Giving by voting for other organizations who speak to your heart -- you can vote for up to 5 organizations per Facebook account.
CHASE COMMUNITY GIVING: BIG IDEA
The Whittemore Peterson Institute for Neuro-Immune Disease (WPI) was created to answer a critical need for discovery and medical treatments for those with serious illnesses that impact the body and the brain. These often debilitating and life-long diseases, including M.E., CFS, fibromyalgia, post Lyme disease, GWI and autism, have too few medical solutions. WPI continues to make significant strides through the work of our innovative research program.
Translating novel research into effective patient treatments for millions around the world will begin with the opening of our 10,000 sq. ft. medical facility. Here we can engage in revealing clinical trials and provide on site care to those who are unable to afford care. We require funding for initial expenses and to establish a patient fund. WPI’s commitment to discovery has already inspired much hope worldwide. Now it is time to put hope into action by offering meaningful patient care to these under-served populations.
http://www.wpinstitute.org/help/index.html#chasegiving
Tuesday, May 17, 2011
Homeschooling Chronically Ill Children
I have written a lengthy resource for homeschooling with chronic illness (from the parent's perspective) on one of my other blogs. Today I wanted to share a quick article about Homeschooling a Chronically Ill Child and your legal defense rights.
Tuesday, May 10, 2011
Explaining Fibromyalgia
I just read a great explanation of Fibromyalgia over on the Faith, Family and Fibromyalgia blog. If you have Fibro, the illustrations will resound with you and possibly give you a simple word picture to use to help explain yourself to others. If you don't have Fibro, this story may give you more understanding for your friend or loved one who does. You'll want to read the whole article in detail, but here's a taste:
Just two more days until Fibromyalgia and Chronic Fatigue Syndrome Awareness Day. The Whittemore Peterson Institute (WPI) is building an international network of Advocates who are dedicated to finding a cure for neuro-immune diseases (NID). Learn about May Awareness at ANIDA.
Imagine you’re planning a party and expecting about 20 guests. Three or four friends told you they’d come early to help you out. But they don’t show, and instead of 20 guests, you get 100. You’re overwhelmed.
That’s what’s happening with pain signals in someone who has fibromyalgia. The cells send too many pain messages (party guests), up to five times as many as in a healthy person. That can turn mild pressure or even an itch into pain. When those pain signals reach the brain, they’re processed by something called serotonin. People with fibromyalgia, however, don’t have enough serotonin (the friends who didn’t show up to help), leaving the brain overwhelmed.
This is why people with fibromyalgia have pain in tissues that show no sign of damage. It’s not imagined pain; it’s misinterpreted sensation that the brain turns into actual pain. Other substances in the patient’s brain amplify a host of other signals — essentially, “turning up the volume” of everything. That can include light, noise and odor on top of pain, and it can further overload the brain...
Just two more days until Fibromyalgia and Chronic Fatigue Syndrome Awareness Day. The Whittemore Peterson Institute (WPI) is building an international network of Advocates who are dedicated to finding a cure for neuro-immune diseases (NID). Learn about May Awareness at ANIDA.
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