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!

I grew up a child of a seriously ill parent. My mom had her first stroke when I was in preschool and has gone on to have five more significant strokes, not counting TIAs. She has Lupus and Antiphospholipid syndrome. Her left knee has been eaten away by arthritis and it is starting in on her hands. Her heart caused frequent issues. I knew how to call 911 before I knew how to dial a friend's phone number. I should be used to medical emergencies. But she is also my best friend in the world, the one person I have who understands me without the need for words, the person who is always there when I need someone, the one who has faced this monster along with me. She literally fought to help me learn to eat again, fought for me to not give up in finding adequate care, fights to keep me walking around the apartment as long as possible, refuses to accept anything less for me. And I fight for her.
So now when she is lying in an ICU bed on a vent with more lines running into her than I can count and an open abdomen from emergency surgery that they could not close due to infection and swelling my heart is breaking and my world is turning upside down. Never before has she been so sick that I couldn't talk to her, and I would give anything to hear her voice. I have cried myself to sleep the past two nights. I have fallen on my knees before God and cried out in prayers, many that had no words to them. She made it through the first two days without going septic, so that is very important. She shows her temper when they mess with her and gets royally pissed off when they move her or change her bandages, which lets me know she is still there. She seems to be calmed by my voice when she opens her eyes in panic, and that means the world to me. Today the doctor is taking her back in to surgery in an attempt to close her abdomen. This is not going to be a sprint but a marathon, and I pray for endurance - for her body and mine. Stress does not do nice things to dysautonomia. I took this morning off (my brother and sister in law are with her) and will go up to the hospital for her surgery. I just want to know why, and I know there is no answer. I want to know if God thought that we didn't have enough to deal with, because I am not strong enough for this. Most of all I need my Mom to be okay.

Fake banana flavor should be considered cruel and unusual punishment. As a child I had to take Ditropan in liquid form for a while because the dose I needed was not available in pills and no one though to do math with pills. It was the most horrendous, torturous fake banana flavor. I hated bananas themselves for years after that. So when I squirted the first mouthful of Nystantin in my mouth to treat the thrust that is a bonus gift from two rounds of antibiotics I was horrified to find it sticky sweet and tasting of bananas. I swished and gargled and swished some more then spit it out quite indignantly. How dare they make this medicie I have to take 4 times a day for a week taste of cloyingly sweet rotten bananas? When I went to find solace in my Mom she had the nerve to tell me that she knew all along it was banana flavor and hadn't bothered to warn me! Nice Mom, I know where you sleep!! It is almost worth keeping the field of fungus to avoid that flavoring!! Hey, I wonder if I could grow mushrooms on my tongue? or moss?or lichen?

I don't know where I have retreated for the past month, but it has been somewhere inside where I feel like I do not have to be anything for anyone and I can deal with life on my own terms. The start of the school year is always hard for me as I watch children and teachers prepare for the return to the classroom and I am reminded that there is no classroom for me, no children eagerly greeting me each morning, no lessons to plan, no rules to break. Add to that the fact that a vast majority of my friends are married (or have just done so) and are now having babies and I freely admit to jealousy at times. I was born knowing how to nurture children, I was born with a heart of a mother and yet this will never be for me and it hurts. I can not safely have any biological children, nor would I risk the chance of passing on the genetics that have caused me to be sick, and no one will ever allow someone with such health disabilities to adopt. When I was a teenager I kept a journal of letters to my future children. So it is mourning for a dream.
Three of four weeks ago I did have my Botox injections done and they have been very successful. This time with a combination of the blood thinner and Vitamin K deficiency I looked like one very bloody human voodoo doll that was held together with gauze and tape. My final bruise is almost gone. I wish I had KAFO braces to wear as they would do so much good, but due to Gollum (the pituitary microadenoma) and the steroid to keep my blood pressure up and my complete inability to get any exercise I have been steadily gaining weight and my braces from last year no longer fit. And at $800 a pair I can't just get another set made.
Six weeks ago when I last saw the endocrinologist he asked me whether or not I thought the medicine he was putting me on would work. Knowing that nothing ever goes easily for me medically I said no. He looked at me strangely and said he thought it would be a huge success. With five days before I see him the medication has done nothing. Sometimes it stinks to be right, but I did tell him so. I sound like such a pessimist, but I have yet to have a first treatment attempt for anything work including most infections.
I have an appointment with a new neurologist on the 24th as the one dr would only be able to see me if I had tested positive for mitochondrial disease (I had funky DNA but not in a known pattern - I created my own) through MDA. The neurologist I saw previously has said with my best intentions in mind that she has no idea what to do with me anymore and this is over her head. I actually appreciate it when a doctor admits that they don't know and are in too deep. So I will be seeing the wife of the MDA doctor so that they can work together to treat me and she has more experience with the "weird and unusual".
I have been listening to a lot of my audio books, which are my escape and my entertainment and my lullaby at night. I find focusing on reading a regular book harder now, which totally pisses me off because I used to read a book in a day or two and now I struggle to get through a chapter. The audiobooks give me the magic of books in a way that is less stressful and easier to access. My iPod is almost evenly split music and books. I greatly prefer nonfiction so I have learned about the Missionaries of Charity and Mother Theresa, the motivations of radical Islamic terrorists, how one girl followed God and is creating massive change in a community in Uganda, the occupation of Tibet and the flight to freedom on one family, and so much more.
My father gave me an air compressor to help inflate the tires of my wheelchair which seem to slowly leak out as I take curbs and such. However, the nozle thingy on the end was old (everything else is new) and it leaks so in the process of trying to put air in my Mom and I managed to flatten the tire. That takes skills to flatten a tire while using an air compressor. My poor brother got a desperate phone call and had to come over to fix the mess we created. Even he had a hard time because the dratted thing has to be held in with force as well as down to get any air into the tire, so I don't feel quite so inadequate. My Dad is going to replace the defective part next week and then I should be good to go. My worst nightmare is getting stuck with a flat tire, cause its not like I can hop out of the chair and start pushing it home.
I will try to update again soon and stop withdrawing so much, but I also have learned that however I feel and however I need to cope are normal and acceptable on this journey. I can't do it how someone else would do it, I can only live out my journey one day at a time.

It has been a long time since I wrote here, and yet I find myself struggling to come up with anything interesting enough to bother with a post. So I think this will be a series of small posts, or whatever happens to come out of my fingers as I type.
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On my birthday I had the HIDA scan done of my gallbladder. The first hour was easy, just lying there as a dye collected in my liver and gallbladder. It was boring but I have had longer MRIs so I could easily pass the time. Then they bring in the syringe of misery. This is the hormone that causes your gallbladder to contract. He warned me it "might cause a little nausea and cramping". Okay, that is like saying the Pope might be a little Catholic. It is injected over five minutes, and within seconds of the first dose I was violently nauseous and felt like I had been kicked by a mule. And each time he added more medicine it upped the fun factor. I begged him to just slam it in all at once and get it over with, but that was a no go. The nausea and pain lasted about 20 minutes before abating. I don't have any results yet because on the day of my follow up appointment I did something stupid involving a shower and was in too much pain to go. I now have proper respect for the shower.

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The day after my birthday I went out to eat with my mom, my brother, and Little Bit (my 6 year old niece). Little Bit had very proudly chosen my birthday card so it not only had holographics but played music at an ear splitting decible when opened in the restaurant. :) She loves those musical cards. Its so cute, she signed it herself and managed to misspell her own name. She was showing off a new dress she had gotten when they went back to school shopping and talking about the great conundrum because the had not just the dress in that style but also a skirt and a shirt and she had the hardest time deciding which to get! I had a feeling she might be a bit of a princess when she had to have access to the floor to ceiling mirror at 12 months to approve or disapprove whatever outfit I put her in for the day. Yet she is also tomboy, playing in mud, fishing with her dad, and taking karate.
I ordered crab legs for dinner (they are low fat and don't hurt my stomach as I do not use the butter). I can not figure out how to eat crab legs without things going flying and generally making a mess. Little Bit decided to point out to me that I was being "very messy eating your crabs, getting it all over the table. I informed her I was not taking etiquette lessons from the child who two minutes earlier had two macaroni noodles stuck in her nose to look like a seal.

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Gollum (the pituitary microadenoma) appears to me a prolactinoma. He is sending out mildly elevated levels of the hormone that causes my body to think it is pregnant or nursing. It is possible that the low levels are from my polycystic ovary disease and Gollum is doing something else. We will recheck everything in October, but I am starting a new drug to bring down the prolactin levels this week. I really like the endocrinologist. He is trying to look at the whole picture of my presentation, as he feels that there ae too many diagnoses and something should be able to explain most of my issues. He is a well respected and highly published academic doctor so I am hopeful he may find something.

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I will try to write more soon, more that is humerous and not so boring. Just not a ton of things going on right now, and it has been too hot for me to go out of the house lately. I did go to Target on Tuesday and today for medications and a little wheelchair bowling on the side :) I also took some birthday money and went to my favorite smelly stuff store (Bath and Body Works) and stocked up on hand sanatizers and lotion. Today I had to replace my expensive earphones for my iPod. The others got a short in them and only one ear worked. I hate having to buy the expensive ones, as it feels like shoving money into my ears, but I sleep with my iPod on listening to audio books and so the earphones need to be comfortable, durable, and have good sound to them. I also found a pair of long pajamas with owls on them so that made me very happy! Owls make me very happy!

Thirty years. That is thirty more birthdays than the doctors predicted I would be alive to celebrate. Thirty more years of life. Thirty years of tears and laughter, of falling down and standing back up, of wonder and amazement, of learning and learning again, of sacrifices and blessings, of giving and accepting, of seeing through the artifice, of passion and determination,of family and the most incredible friendships, of love. In thirty years I have laughed more than I have cried, I have gotten up each time I have fallen down, I have never surrendered to the definitions expected of me, I have been blessed to love some of the most incredible children God has put on this earth, I have learned the power of forgiveness, I have seen the human soul at its most fragile, and I have learned to live without fear of judgement. Over thirty years I have witnessed sunrises and sunsets, chased fireflies across a field of wildflowers, climbed haybales and slid down, splashed through a mountain creek, slept beneath the stars, jumped in mudpuddles, danced in the warm spring rain, received flowers from someone who loved me, walked the ocean shoreline on a crisp spring morning, sat around a summer bonfire, learned to see the world through the eyes of a child. I have been richly blessed in thirty years. I can not count all the blessings that I have received, but I know that they number more than the stars in the sky tonight. I am ever thankful for these thirty years and however many more I am given to not just live but be alive.