It has been a really long time since I wrote anything here. My first reason is that I have become very involved in Compassion International. I have a website where I share information about Compassion and the children that I sponsor that is located here. It is still very much a work in progress and there is much more I want to write and link to and share. The second reason I have not written anything here is that without health insurance my medical situation was forced into a holding pattern. I actually have had to discontinue a few critical medications, including an antiseizure medication also used to control my migraines, due to cost prohibitions. I can not afford prescriptions that cost $400-$500 let alone the ones that cost thousands. God has provided with my two most critical expensive medications and somehow each time I reach for it there it is. It is like the fishes and loaves multiplying. I am very nervous today, even though I should be at peace and trusting the Lord, because tomorrow is my social security hearing to determine whether or not I qualify as disabled. I am frustrated that it has come to a hearing and scared the judge is not going to see the severity of my illnesses. If I could work, do any job, I would rather do that than be as I am now. I feel so useless. If they do find that I qualify as disabled this will allow me access to medicare and increase my odds of getting medicaid. Any and all prayers will be appreciated. Hopefully tomorrow I will update with good news!!

UPDATE: The social security judge was unable to make a determination today regarding my case. She is really torn over what to do and at one point had her head in her hands on the table. The problem seems to be that my medical records lack "objective data" to support my claims. My MRIs and Lab work and DNA testing are not abnormal (or abnormal enough) to warrant a case. However, several doctors who all got the idea from my first hospital admission have used the term somatization, or the physical manifestation of emotional issues. I know this is not the case and do not want this label. She feels it is a well fitting label because there need be no objective data. I may have to go for a psych consult to prove that this is not in my head. I don;t know how emotions could cause contractures, bone shifting, documented weakness, an abnormal EMG, and dangerously low blood pressure. I am frustrated but trusting that somehow God has a plan for all of this. Please keep praying.

Faith, hope and love. These are the keys of life. So far I have stepped out in Faith to share Hope and Love with children living in unimaginable poverty through Compassion International and I have been richly rewarded. So far I have held to my faith that God will provide for me, and every need has been met. He somehow made it so that I have an extra month of my most expensive prescription, and this is a prescription that I can take half dose and still be safe so I have a 4 month supply. Loaves and fish. Almost all of my prescriptions have excess pills with about a month extra. The prescriptions that I do need are very reasonably priced, and I was able to cut the costs of two of them by calling other pharmacies because Target price matches. My doctor allowed me to call and request an antibiotic for a sinus infection without having to pay for an office visit and also agreed to switch a medicine due to side effects trusting me. Love has been poured out to me abundantly, and I have had amazing support. By taking my medication as prescribed and dealing with the sleepiness, I am obtaining results that make the dystonia tolerable. Faith, Hope, and Love.
I will write another post soon, after I send out letters to my Compassion kidlets, about other aspects of life but I wanted to get this update on here.

My COBRA insurance coverage ends on February 29 - as in Wednesday. I have been praying, my family has been praying, my friends have been praying, and quite possibly soon my sponsor children will be praying. I was notified today that my Hearing for Social Security is scheduled for May 21. While that beats 9-18 months, it sure is not the outcome I was praying for. I had so hoped and believed the judge would just look over the mountain of papers and make a (positive) decision. What is a hearing going to do? It is teleconferenced so the judge will not even see me in person so "the big show" will be shoulders and chest in a wheelchair. I can do a 360 for full effect if that makes him happy. I guess by May I have to shave my legs so I can wear a skirt because I don't think Federal judges are down with blue jeans. My other hope of Medicaid is still closed due to lack of funding. This is Michigan. We probably will not have funding again for a few decades. Stupid auto industry, who needs a car anyway? Actually, that is the problem. So now I am stepping out in complete blind faith that God will provide for my every single need as He promises in the Bible. It may not be how I expected (oh it most certainly is not how I expected) and it will be in His perfect time (which seems to not be synchronized to my watch) but He will provide for me. I wish I could say how, but I have no clue. I wish I could say when, but my calendar is full of empty boxes. All I know is that it will happen and I choose to have faith in the one who created me and has promised to never fail me. I wonder if wheeling over to Canada to buy my prescriptions is a part of His plan? ;)

My "words" that I want to live out with passion this year are faith and hope. Faith includes believing that the Lord will provide in all circumstances exactly what is needed without fail. Hope is the joy that comes from faith, the belief in something more, the intangible that you hold on to when all seems lost. Faith and Hope are meant to be shared, and so I would like to introduce to you two very special little girls that are now my very special little girls.

Meet sweet Miangeda! She is six years old and lives in the mountains of Haiti. She was chosen to be ours by my mother and I as she just captured our hearts. She looks so solemn for such a little thing. I have not yet received the full sponsorship packet for her, but I do know that she loves reading and playing with dolls, and is doing above average in school. Please add this little one to your prayers!

I would like to introduce precious Monique! She is nine, going to be ten in August (her birthday is only 5 days after mine!) and lives on the flatlands of Burkina Faso, one of the poorest countries in Africa. I fell in love with her and can not wait until the day I receive a picture of this sweetheart smiling! I do not have her full sponsorship packet either but I do know that she has few if any toys and instead enjoys playing with boxes. Boxes, it just breaks my heart. She too is doing above average in school despite all obstacles. Please add her to your prayers!!



This is the Bethelehem Child Survival Program in Bory. Haiti. Haiti's maternal mortality rate is 630 per 100,000 while the infant mortality rate is 86 per 1,000. The Child Survival Program provides monthly health screenings for pregnant mothers, a monthly food kit of healthy nourishing food, immunizations and health screenings for infants and young children, education, parental skills training, and job skills training. Please pray for the mothers and children who receive care here.

Yes, I live on a very limited budget. Yes, I could use the money elsewhere. But elsewhere is not where I am called to use it and elsewhere is not going to make a difference in the lives of two beautiful, precious little princesses who already look so weary. Elsewhere is not going to provide immunizations to babies, elsewhere is not going to feed pregnant mothers, elsewhere is not going to educate a community of young mothers on how to meet the needs of their child - simple things like hygeine and avoiding infections to how to read a book together. Elsewhere and Some other time are always going to be there. These children are here, now and they can't wait. I believe that living with passion means giving until it causes sacrifice. I can not change the world, but for now I can change a few lives. God will provide the rest. And I get to share with these little ones the fact that they are in fact true princesses of the Lord, real princesses and instead of being forgotten they were chosen and so loved!! It all comes down to faith and hope!

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
E.D.

My last post was written on one of the most difficult nights of my life, as I was helpless as my mother faught for her life following emergency surgery. For six long days she was on life support and all I could do was hold her hand and be her voice to make sure she got the care she needed and the dignity she deserved. For seven more days she required high level medical care, and I spent every single day at the hospital with her (minus two when she was on life support and I was sick). When the doctors wanted to send her to a nursing facility in the area to recover not only did Mom refuse but I politely informed them that they could do so only over my dead body and wheelchair thrown in front of the vehicle. So Mom came home with "skilled" (oh the joke!!!) home nursing care, physical therapy, and a nursing assistant. Before she left the hospital I learned how to do everything the nurses were doing for her, things I never could have imagined being able to do but love speaks another language and God provides strength enough for what you face. Its a good thing too because that "skilled" nurse was only good for providing the medical supplies we needed. It is now seven weeks later and it has been a journey of faith. Faith and hope have been our sustenance, and a wicked sense of humor that allows us to laugh at even the "tragedies" in life. God broke through Mom's stubbornness to allow me to call 911 just in time - another 30 or 60 minutes might have swung the outcome to fatal. God lined up the best surgeon, the one who uses the most modern and aggressive infection fighting techniques. God prevented her from going septic. God prevented pneumonia or blood clots as she has a clotting disorder and laying unmoving is a huge risk factor. God knit her back together from the inside out. God guided her through a process where 60% of patients die within 30 days of surgery. We are blessed. At times one or the other of us gets weary, frustrated, angry, etc. But then we remember all of the blessings, we remember how faith has fortified us and hope sustained us.
This Christmas we were unable to enter into the material aspects of the holidays. No cards were sent, no presents purchased. We did put up the two trees - a 4 foot tree and a table top 18" tree- and decorated them because Mom loves the lights and we both love the memories of the ornaments. By not geting swept up in the commercialism of this season we were able to really see all of the presents we have received - the love of family and friends, the gift of redemption, grace, mercy, hope, faith, life, memories, health, all different kinds of healing, joy, and an abundance of blessings.
My own medical issues and needs were put to one side as much as possible as I have been engaged in assisting with Mom's recovery. She is still weak, still healing. And she will undergo another surgery sometime in 6-9 months. I ran on pure adrenaline and some adjustments to my medications for far longer than I imagined. The adrenaline is now gone and I am a disaster, dealing with the effects of now and the effects of weeks ago and untended medical issues. As things get stable, I will be getting the medical services I need and trying to regain some ground I have lost. Another concern, although I am choosing to have faith in God to provide (prayers are always welcome), is that my COBRA insurance runs out the end of February. My Social Security appeal is at court level but can take 9-18 months to be determined which rules out medicare. The medicaid program I qualify for has no funding. I can afford to purchase a single person policy but there is no pharmacy coverage and you are limited to 2 dr visits per year. I do not qualify for the Obamacare Pre-existing condition insurance because I have had insurance, and you must be without insurance for 6 months prior to qualifying. I can not go 6 months without insurance. I can not go a month without prescription coverage without a high risk of mortality. Thankfully God is a God of impossibilities and moving mountains.
Now that I have a bit more down time I will try to keep my journal updated and write more. I hope everyone had a Christmas full of the gifts that are too precious to be bought, and enters into a New Year that provides them with enough of everything they need but never so much as they forget to appreciate it!

This afternoon I have an appointment at the regional MDA clinic. I was referred by my amazingly dedicated primary neurologist in an attempt to try to find a diagnosis (there is at least one specifically that she has in mind to rule in or out). To say that I am nervous and anxious would be a wee bit of an understatement. Yet I am not nervous and anxious for the reasons that many people who would find themselves at such a clinic would be; I am not afraid of hearing that I have a certain disease or disorder. We already know that I have some sort of significant progressive neurological disorder that has tossed my life inside outside upside down. We already know there is some major malfunction that ties in with the severe dysautonomia. I have had to accept that something has forever changed how I am able to use my body as a tool to access the world, and I know that I am dealing with something that has a little more of an attitude problem than the common cold. What we do not know is WHAT exactly the disorder is, we have no name for it, and with no name we have no way of knowing how to fight the monster or what to expect from it. I am nervous and anxious that once again this will be a dead end. I am having to slowly accept that modern medicine has limitations and we may never be able to give a name to this monster, and I will forever have to live in the gray area of the unknown. For me, this is very difficult because I crave even the illusion of control in my life. All along none of this has been in my control, my life has been God's from the beginning but for so long I was able to fool myself into believing that I had some control and in this I found comfort. Now that comfort is gone and I am learning what true faith is. Faith is in the gray, unknown area - in accepting that even if there is never an answer it will all be used to God's glory and that from what seems like a less than ideal circumstance to me will come amazing blessings. Faith is accepting that I don't have to have all of the answers. Faith is hard. For today, faith is believing that God has already created the perfect plan for this day and that His will for it is better than mine - be that an answer or not. For today, faith is letting go of the fear and anxiety and trusting that God will provide all I need.