Monday, December 2, 2013

Formerly Darkness

"For this you know with certainty, that no immoral or impure person or covetous man, who is an idolater, has an inheritance in the kingdom of Christ and God. Let no one deceive you with empty words, for because of these things the wrath of God comes upon the sons of disobedience. Therefore do not be partakers with them; for you were formerly darkness, but now you are Light in the Lord; walk as children of Light (for the fruit of the Light consists in all goodness and righteousness and truth), trying to learn what is pleasing to the Lord." - Ephesians 5:5-10

Friday, November 22, 2013

Amazing website - Death Is Not Dying - young mother's testimony shortly before cancer overcame her.

ME

Well over two decades of my life...

Thursday, September 26, 2013

Heather's Story - Mesothelioma Awareness Day

I received an amazing email from a new friend Heather last week. She asked if I would be willing to share her story today. She writes, in part, "I am a wife, mother, and a mesothelioma survivor. When my daughter was 3 ½ months old, I was diagnosed with this rare and deadly cancer, and given 15 months to live. Despite my grim prognosis, I knew that I needed to beat the odds for my newborn daughter, Lily. It’s been 7 years now and I feel that it’s my duty to pay it forward by inspiring others."

If you would please take a moment today to visit Dying to be Heard to simply learn a little about this condition, you would be doing yourself an amazing favor while making both Heather and me Happy in the process! Thanks. :)

Tuesday, September 10, 2013

Invisible Illness Awareness Week

From Facebook ;)
Sorry I didn't get this posted to any of my blogs before the event, but a huge thank you to Lisa Copen of  Rest Ministries for allowing me the joy of guest hosting in her live Invisible Illness Awareness Week chat this morning on Facebook! For much of the morning, we averaged between 300-500 chat participants with one question thread bring in over 1,100 visitors! This blows me away!!! I've been praying for God to give me a bigger platform, so this is all Him and so not me!

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. :)

From Facebook
Missed it? Don't worry, but feel free to catch each post this week by using #innvisibleillnesschat on Facebook, or going directly to https://www.facebook.com/InvisibleIllnessWeek. You can jump into any thread in the archives and still read or comment. :)


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!



Saturday, July 27, 2013

Where Else I'm Writing

People are continuing to find me through various sources and surprised that they didn't know it was "me" all those different places. So to help everyone find me, I want to list the projects and places I currently remain active so you can easily find me. (Technically, I'm registered for over 30 blogs, but some I don't keep current anymore, some I per-registered for names of probable future book projects, some are titles I know people to search for me by and just redirect to other active blogs, etc.)

From Facebook - I do this a lot!
So here's where to currently find me actively writing, cup of tea on the side table next to me (picture from around my home to mentally picture the process):

Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage and Adoption Loss (book published by NavPress, 2005, ISBN-10: 1576836541; ISBN-13: 978-1576836545) . Hannah's Hope blog and Pintrest pages on infertility, miscarriage / loss, adoption. Facbook at https://www.facebook.com/HannahsHopeBook

InfertilityMom, blog on motherhood after infertility and loss. My motherhood pin board (along with those just listed above) probably best fits this audience. Homemaking too. :)


My current book project, a harvest-themed devotional study on the fruit of the Holy Spirit, especially in the face of trying times, working title Harvesting Hope from Heartache and the accompanying Harvesting Hope blog and Harvesting Hope, fruit of the Spirit , gardening, roses, and spiritual warfare Pintrest pages. Facebook at https://www.facebook.com/HarvestingHope


Of course, Stroke Of Grace, my unfolding stroke recovery journey blog. I hope to write an accompanying book if future years. On Pintrest, there are several specifically related pages: stroke-related pictures and thoughts, why I'm homesick for Heaven, therapy and exercise, my struggle to find purpose, thoughts on grace and glory and a great collection of brain images. Facbook at https://www.facebook.com/pages/Stroke-of-Grace-by-Jennifer-Saake/339888582731687

From Facebook
A future book project, currently titled Given Me a Thorn,a study on the life of the Apostle Paul as comfort, encouragement and resources for living with chronic pain and/or illness. Pintrest pages at Natural Health and Chronic Illness, Gluten Free, Latex Free, MountainRocky Road, and Given Me a Thorn. Facbook at https://www.facebook.com/GivenMeaThorn

A page I have let fall fallow since the strokes, I hope to revive again, InnerBeautyGirlz, tips and tricks (and even some give-aways) for outward beauty, but with an intention focus on the heart and soul.  I have, however, really been building my Pintest page on this beauty this year, a reflection of my own struggles both physically and emotionally/mentally, to accept God's perspective on me in my brokenness. Facbook at https://www.facebook.com/innerbeautygirlz


Find me on Twitter at @InfertilityMom. I would love to invite you to follow all my Pintrest boards (several more, not listed here, like Social Media, various holidays/seasons, Japan (special board on Koi fish), Tips and Tricks, romantic bicycles like the ones above and below,  my heroesJust Because... and much more) at /InfertilityMom.

From Facebook
My sacrifice, O God, is a broken spirit; a broken and contrite heart you, God, will not despise. - Psalm 51:17

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.

From Facebook
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!

Wednesday, July 3, 2013

Ocular Migraines (OM)

There are a serious of issues addressed on my stroke resource page that I wanted to give further individual attention to various conditions I wish doctors would more readily address.


Ocular Migraines (OM) - I have had traditional migraines before (usually without auras), but had never experienced this phenomena, or even heard of it, prior to my strokes! It isn't often a "stroke-issue" because lots of people without brain injuries get OMs and I don't yet know anyone else who started getting them post-stroke, but the strokes seemed to be the trigger for me! When it started happening, I didn't have any idea what was going on, I presumed a per-seizure aura from descriptions other had told. It freaked me out! (There is a fairly good graphic presentation of what an OM kind of looks like at AllAboutVision.com/conditions/ocular-migraine.htm though I describe mine more as a kaleidoscoping, prism effect, similar to the photo below, but impacting full visual field.)

As it turned out most of mine are quite painless, have lasted between 20 minutes and at the most up to two hours, eventually cause temporary blindness in most cases, and just leave me feeling rather disoriented and shaky for a day or so afterwards. I have only experienced pain and traditional migraine symptoms in conjunction with an OM about 3 times, in fact usually I feel good enough to continue regular activity in the midst, if only I could see. (I once walked into a wall while trying to carry on with my house cleaning activities during an OM, because I couldn't tell where I was going. I now know to lay down quietly and wait out the annoying vision distortions.) Now that I know what is going on, they really don't rattle me, I just wish I had at least had some idea of what to expect the first time it happened!

Source: http://commons.wikimedia.org/wiki/File:Migraine_aura.jpg

Tuesday, July 2, 2013

Central Pain Syndrome (CPS)

There are a serious of issues addressed on my stroke resource page that I wanted to give further individual attention to various conditions I wish doctors would more readily address.



Central Pain Syndrome (CPS)  (previously or also known my many different names including Thalamic Pain Syndrome, Dejerine-Roussy Syndrome, Posterior Thalamic Syndrome, Retrolenticular Syndrome, Thalamic Hyperesthetic Anesthesia, Central Post-Stroke Syndrome) - this information was so very, very hard for me to find. After seeing literally dozens of specialists, I realize that several have used various wording to allude to and even work on addressing this condition, but no one has still ever given me the actual name that I've had to research for myself. (As of this writing, I hadn't yet been given a formal diagnosis, though my doctor later confirmed it.)

According to the Central Pain Syndrome Alliance, "Central pain syndrome (or CPS for short) is a neurological condition caused by damage to or dysfunction of the central nervous system (CNS), which includes the brain, brainstem, and spinal cord. This syndrome can be caused by stroke, multiple sclerosis, tumors, epilepsy, brain or spinal cord trauma, or Parkinson's disease." WebMD reports, "Pain or discomfort may be felt after being mildly touched or even in the absence of a stimulus. The pain associated with thalamic syndrome may be made worse by exposure to heat or cold and by emotional distress. Sometimes, this may include even such emotions as those brought on by listening to music." See also The Central Pain Syndrome Foundation and the CPS page at Pain World.

From my research, even though the name is often linked to a specific part of the brain, the thalamus may not be the only area of brain injury that can, again according to my reading, in 40-50% of strokes, result in this condition. According to a friend on Facebook (I have not tried this for myself yet), "Charting and coding errors do happen, especially with central pain syndrome since some medical folks are not aware of the medical terminology for this condition. The diagnostic code for Central Pain Syndrome is 338.0."

Here is my personal account of how this condition can impact me (keep reading past the TN information, though don't skip it as that will be a great point of reference for my CPS description): http://strokeofgrace.blogspot.com/2013/09/problem-of-pain.html. You will also find yet an additional CPS link listed there.


Additional links of Interest About Various Chronic Pain Conditions:

NINDS Central Pain Syndrome Information

What You Need to Know About Stroke-Induced Pain

Strokes Raise Risk of Chronic Pain

Brain Study to Predict Pain

Central Pain Syndrome

Dejerinne-Roussy Syndrome 

Post Stroke Pain

Neuropathic Pain

Still trying to figure out what's going on with my Trigeminal Nerve. TMJ we think, but the strokes messed up my ear, neck and shoulder too, so it's not just classic TMJ! My biggest help, thus far, has come through facial pain massage therapy. Update: I am still dealing with significant TMJ jaw pain, though this has recently been linked (by my neurologist) as also having atypical trigeminal nerve involvement/pain. A friend suggested The Facial Pain Association for support.

Monday, July 1, 2013

Pseudobulbar affect (PBA)

There are a serious of issues addressed on my stroke resource page that I wanted to give further individual attention to various conditions I wish doctors would more readily address.
http://pinterest.com/pin/266979084132555771/
Pseudobulbar affect (PBA), also known as pathological laughing and crying or emotional incontinence, is, "The phenomenon of laughing and crying out of proportion to the underlying feelings of sadness or happiness was recognized by clinicians in the late 19th century as a common manifestation of acquired brain damage, especially stroke." (Wilson SAK. Some problems in neurology. Ii: Pathological laughing and crying. J Neurol Psychopathol. 1923;4:299-333.)  Around the 6-10 month marks, I described this phenomenon as having "two brains."

An outstanding, brief video explanation that is quite clear and in depth (I so wish I could find a way to directly post this much watch video here) is available on Facebook at https://www.facebook.com/photo.php?v=10151837826337608 or I could get to it from YouTube (but Blogger tells me it doesn't exist when I try to directly imbed here) by going directly to http://www.youtube.com/watch?v=YAC0zDZ_ERg. Also visit the National Stroke Association PBA assessment and information page at http://www.stroke.org/site/PageServer?pagename=pba_scale. Another good information page is https://www.pbafacts.com/.

I also said (probably around the 1 to 1 1/2 years marks), "I've been complaining about a few melt-downs per day, or sometimes even per week. Reading information, I am thankful to have it so "easy" as some people deal with these episodes over 100 times per day. :( Still, it is not fun. I would say the emotional fall-out of PBA has been MUCH harder to deal with than even the frustration over the inability to walk all these months. PBA happens, depending on what statics you read, in about 20-60% of strokes. It has been a major part of what I have perceived to be fractures in our marriage. My husband is a saint to walk with me through this exhausting and constant, endless process!

After about a year and a half of over-expressing emotions, often inappropriately, I now find myself almost always totally unable to cry, even when I need to or really should. (If I do get crying now, watch out, but it usually just cannot happen.) It would seem that this is yet another expression (lack of expression as the case may be) of emotional disconnect. For us, personally (differs greatly for each person!), the hardest season, including daily shouting, screaming, sobbing out of control melt downs, usually with my husband being my greatest target, was from about 4-10 months, peaking at its worse around 6 months.

From another stroke page, "PBA is triggered by damage to areas of the brain during a stroke. It is thought to affect more than 1 million people in the U.S... PBA is often mistaken for depression, causing it to be under-diagnosed, under-treated and sometimes inappropriately treated."
 
Random quote that seems applicable here: ~ The first screw to get loose in your head is the one that holds your tongue in place. ~

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.

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.