Thursday, June 24, 2010
Tuesday, June 22, 2010
From: "Spindler, Jason" <Jason.Spindler@CountryMark.com>
To: "firstname.lastname@example.org" <email@example.com>
Sent: Tue, June 22, 2010 2:00:37 PM
Long time, no talk. How's LIBERATION been treatin' ya? I just wanted to run something by you wonderful, wonderful people.
First, I need to tell you I tried to GO LOCAL. I thought it would save time and money and possibly cause there to be another place in the states that would be willing to do the procedure. Long story short - my doc didn't really believe in things and claimed not to find anything out of the ordinary. Strike one.
Strike two was my doc in New York being shut down pending that infamous IRB approval. Since then I connected with you guys, but have been very apprehensive of a strike three. I've nearly called you a billion times, but the only reason I haven't is my having mailed back and forth with my NY doc who has warned me against newbie docs.
Having performed several before his shut down, he is afraid several docs will be unsure of exactly what they are looking for and miss something. And even worse, there may be docs out just to disprove this theory. He believes everyone with real, true MS has CCSVI. During his shut down he has even traveled to Italy and spent time with Dr. Zamboni. Dedicated, right?!
The most recent development in my road to LIBERATION has been the good doctor's refusal of IRB approval. Is that a strike three? I'm unsure. He has mentioned he'd go anywhere he'd be allowed to treat his patients. COULD THAT ANYWHERE BE SAN DIEGO?
You've done soooo very much already. And for that, I and many others are greatful, BUT if you'd be willing to reach out to Dr. Scalafani and somehow or another recruit him to TEAM HUBBARD. That just might be a match made in Heaven. Next stop, WORLD DOMINATION!
Please let me know what you think. Either way, I love you guys. And keep up the good work! - Angela Spindler begin_of_the_skype_highlighting end_of_the_skype_highlighting
Monday, June 21, 2010
I'll begin two Sundays ago where I left off. Remember choking at church? No? Well, I do. And I did. The rest of the evening I spent recovering and praising God for answered prayers. As my head hit my pillow I thanked Him for all he has done, all He is doing and all He plans to do. Whatever is His will - with Him - I know I'll be okay. Amen. And I rested very well that night. And I pray my dear, dear Wendy rested well too.
Just a few blocks east of mine, at her home it seems she'd just gotten settled into, my friend Wendy was resting her weary head upon her own pillow for the last time. Earlier that week she had posted a Bible verse about God's will on Facebook. For some reason or the other it had come to me just then . . . Little did I, or even Wendy, know what was ahead. Or maybe, she had. Monday, for me, after the week that followed, well, I can't even think of anything to write. Wendy's Monday however is a different story.
At some point during her last day home I have heard a story that she took an hour to get out of her bed and in to her dining room to sit with her son so he could read a library book to her. It was a Berenstein Bears book. They had been working on a library program where prizes were given for reading so many hours per week. She was quite proud of the reader her 8 year old had become. As he was directed to having his reading progress filled out Wendy's husband had been directed to helping her back to her room.
It stormed a bit Monday night. Anyone remember that? Next thing I remember is the phone ringing at just after 6 o'clock. Suprisingly well-rested I just happened to roll over and grab it up on the secong ring. This was unusual as calls this early are usually my husband's work desperate for his help. Alot of the time we even let these go thru to our machine. But this day had been different. God's will perhaps. I saw who it was on the caller ID and swallowed hard before answering, "Hello?"
I knew it was not going to be good. But so much began racing thru my head. Maybe it would just be my dear friend on the other end. Maybe she needed a last minute ride to the doc or something. We hadn't spoken in 2 weeks. Maybe longer. I hadn't been as good a friend as she had been to me. My head began pounding. I announced to Jason who it was before I truly knew for sure. I said, "It's Kent, Baby." Two reasons. I wanted him to know it wasn't work. And more important - I wanted him to wake up enuff to be there for me should I need him. Guess what? I needed him.
On the other side of the line Kent said, "Angie?" And as unshaken as I could muster, I answered, "Yes." Then he introduced himself. Silly. Had I not known somber news was soon to follow - I surely would have laughed at him for this formality. Alas, I learned Wendy had been brought in to the ER Monday night and was currently in the ICU. He gave me a brief run down of what had caused them to call the ambulance. He said things did not look well. And finally warned me of her current condition - unsure I'd want to see her like she was.
Little did he know I was nearly dressed and out the door before I hung up the phone. I fought back tears and tried to keep my voice calm and comforting. I remember offering to take care of the kiddo, or whatever I could do. Learning he was already being attended to I was going to see my friend. And my wonderful husband - I LOVE YOU, JASON! - was taking me and even planning on staying over there with me. He's such a jewel. Hadn't we just been thru this with my dad? With Unk? Cancer sucks!
Jason calls his parents to see if they'll take our kiddos for the day. Thank you, Granny and Pawpaw. We made it to the hospital a little after 7. No one was there. Maybe things hadn't been as bad as I'd thought. She was the toughest, most resilient person in the entire world. It was quite possible she was already back home and busy with laundry. No? Her little man's swim lessons were on Tuesdays. Maybe she was at the pool. No such luck.
I took out a 1500 pc. puzzle and began searching the box for the straight edged pieces. No one was allowed back in the ICU 'til 9. Wouldn't have stopped me had it been my dad back there. But had it been my dad, which many times it was, I'd have probably still been back there from the night before. Where was that kind lady that had made that bed up for me all those years ago? I needed her now. Surely she'd be here by 8 and I could sneek back then. No?
8 came and went as I busied myself with that monsterous puzzle of missing pieces. Truth be told - Kent had me scared. I wanted so bad upon my arrival to march back in there to see her. I was fully prepared to lie and say I was a sister. Whatever. But, I was scared of seeing her. Having witnessed DEATH first hand twice in the past 5 years I knew all too well what it looked like. What it sounded like. Even what it smelled like. Then at about 8:30 Kent briskly strolls past the waiting area and thru the double doors to ICU. He had been in a zone not even glancing over to the waiting area. Jason deep in thought and code behind his lap top and me slow to process new information and even slower to act upon it, we failed to catch Kent.
I made it halfway down the hall between the waiting area and the double doors before coming to my senses. I'd waited this long. I could wait another half an hour to give Kent time alone with her. Remain calm, Angela. No alarms had sounded. Kent hadn't been running back there. In fact, he wasn't even jogging. I returned to my puzzle. The internal struggle of whether or not to go back there grew more intense. So much so that puzzle pieces not only failed to come together, they even began to fail making it out of the box.
10 'til 9? 5 'til 9? And still no one at the desk? Screw this. I'm going back. What a long, hard, HEAVY walk that was. Her room had been way in the back. And with patients' glass walled rooms and sliding doors on one side and nurses' stations desks on the other - I trudged along unassisted. No walls to steady myself. No railing. Only rolling carts, wheeled tables and IV poles scattered about to grab for. What kind of sick, twisted obstacle course had I happened upon? Give a girl with MS a break, already!
I approach her room to find the curtains drawn. And I hear her. Still a good 10 to 15 feet away, I can tell my friend is in pain. Possibly agony. I position myself between her door and the nurse's station, soon finding myself holding on to the cluttered work area - the only thing behind the double doors not on wheels. Or on very fast tennis shoes! (Wonder if getting a pair of those would help me?)
The rest of the day friends and family came and went and came again. Me and her nurse got pretty tight as I became allowed to stay and even got to help out with a couple of things. i.e. holding her head, fetching clean towels, etc. As I said earlier - it's as if I'd just done this. I even knew where things were. If I could walk, they'd sooo wanna hire me. And I'd so accept.
The intimate details of the rest of the day including her son's visit and her daughter's return from Florida just before 10 that night I will out of respect leave private. I will report only that her husband was instructed by her daughter not to let go until she'd got there. And although several nurses had said it wouldn't be long - my Wendy had different plans. One nurse, after disconnecting her IV meds brazenly estimated half an hour. Ha! Laughable. This was Wendy we were dealing with here.
Stuff I can report about this day. I enjoyed catching up with Kent and remembering old times. I talked about going wedding dress shopping with her. And about warning her she may be taking things too fast. This made him chuckle and he reminded me they'd be married 10 years next month. I had only been looking out for, and possibly over-protective of, my dear friend. And then there was her young mother's unexpected death. So much she'd been thru. But, back to the good times:
The limo scheduled to take them from their wedding to the reception failed to show up. Luckily my being somewhat slow even 10 years ago we just so happened to still be there and wound up escorting the newlyweds to their reception. And years later Kent practically throwing his new 5 lb. baby boy at me so I could change his dirty diapey. Thanks Kent! My nearly ten pounders handled just a bit different. I had been a nervous wreck handling that precious little thing. And big sis starts dating, gets her license and graduates high school. All milestones, Wendy worried she wouldn't get to see, BUT did! Praise God!
What else? My pastor. Sure he's my uncle too, but that aside, he rocks! I put a call in to my grandpa to check on his whereabouts. I'd hoped he'd be in route from work to home and I could acquire his cell # and get him to swing by. No such luck. Grandpa says, "Hang on a minute. He's right here." Well, crap. Home is nearly an hour away from the hospital and I knew he had services at church that night. Oh well. I explained all this to Grandpa and hung up. The nurse having given Wendy a half hour I had wanted a preacher in there. With this news I bowed my head and began to pray for Wendy's salvation and for anyone better prepared for this than I was. And prayer's work, folks!
Before long, a Catholic friend had out her Rosary and was in prayer too. Next up a Chaplain from the hospital. And then another, this one even in a collar. And then come the Baptists. Wendy's church's preacher Matt and an associate pastor. I learned later they had been there the previous night 'til after midnight, thus explaining their absence for most of the day. Praise the Lord. We had all kind of Bible Verses flying around at that point. I felt better after that but still not content, as nobody'd said the right words yet. Nothing truly from the heart yet.
And then all cleaned up from a long day at work and then on the farm -- in walks my uncle. Troy, as most know him, but Uncle Scott to me. Having heard the desperation in my voice earlier I could tell he was suprised it was just me and one other girl - Wendy's best friend. I rattled off all the 'holy' men we'd had in the room since my call. He smiled and joked that we didn't need him then, not coming into the room any further. She'd been on our church's prayer list for quite some time but I wasn't sure they'd ever really met so I commenced to introducing. With every little bit I'd tell about Wendy, Uncle Scott drew closer and closer.
Finally, I couldn't stand it and in tears I asked him to pray. We usually pray holding hands so although Wendy's hands had been covered I gently pulled down the sheet to reveal her delicate folded hands holding my prayer cloth. Crap! I'd forgotten I'd placed that in her hand the very first thing I'd arrived that morning. More tears came. And then his words. His perfect words. Thank you for that Uncle Scott. And thank God for giving him those words. As he left that night I thanked him and told him I love him. 'Cause I do! And life is too short and too fragile not to tell the people you love EVERYDAY. Amen.
Have I mentioned yet that I fell? I wish Kent would have had a camera as I went down fast. My weak spasmed legs folded like an accordian. Kent lept to the rescue, but alas I had refused assistance. He'd offered his chair countless times and I had refused. Upon falling I announced God had provided me with a seat I failed to realize I needed. I believe this amuzed Kent as he chuckled and said, "You're just as stubborn as my wife." And if the tables were turned I sure hoped I would be. This girl could take on Rocky, Apollo, Clubber and Ivan any day of the week and stand victorious.
It surely had been one long, trying day. I intended to stay and see her thru but couldn't short of them rolling in another bed for me to bunk with her. Jason had already fetched me a wheelchair. I'm so pathetic. What am I bitching about? My friend, only 7 years older than me was dying. Or was she? With her daughter's arrival I left knowing she wouldn't be left alone again. I asked to be called should anything change and again offered to help with her son or come over to relieve her daughter in the morning. Yeh, right?! Like that was gonna happen. Her daughter really is as stubborn as her. And I love her too!
Thinking I'd fall asleep on the ride home, shear exhaustion had quite the opposite effect on me. Jason told of his supervisory rolls in the waiting area as Wendy's son wandered in and out of the ICU. He had behaved exceptionally well, but seemed lost. Poor guy. And I became Ms. Chatty telling Jason of all the goings-on behind the double doors. Including her son telling her goodbye only to cross the room and comfort me with a pat on the shoulder as I remained perched albeit comfortably on the floor. Such a little gentleman.
Wednesday I awoke to no news, assuming the worse. I was sore in places I forgot existed. And emotionally spent. My eyes ached. There were no tears left. I spent most of this day attempting recovery and searching for word of news via Facebook. Nothing. I get word finally of no change - except location. They're moving her to hospice. Great. I think everyone will be more comfortable there. Praise God! More prayers answered. I report I'll be over later then, once they've got her settled in.
First, I'm takin' my kiddos to see Marmaduke. I'd been promising all last week so when Pawpaw and Granny offered to drive us. Off we went! They were gonna drop me at the hospital after and Jason was gonna come later to get me. Overzealous expectations with the day I'd had just previous. And God said, "Go back home, Angela. Rest." Well, that's not exactly what happened, but suffice it to say after the movie that's exactly what I did. Home and rest. Sorry Wendy. I missed ya, but I heard you had quite a few more visitors. You were probably tired of hearing my voice by now anyways.
So we make it back on Thursday to hear the phenomenal news you'd opened your eyes and told your baby boy you love him. Praise God, Wendy! That is wonderful! He knows you do, girl. And everyday in the loving home you made for him he will remember you do. We visited a while, this time with Kent and your dad, as he'd made it back from Florida now too. I thought maybe you hadn't been hanging on for just your baby girl, but your daddy too. Maybe now you could let go. As I squeezed your hand (still gripping my prayer cloth) and kissed your forehead, I felt this would be our last goodbye.
Woke up Friday morning even more sore than the days before. What now? Well I'm glad you asked. That night I dreamed a beautiful dream. Odd, but beautiful. Wendy and I danced ALL night. We were at the hospital, but felt great and were dancing room to room. Heck, we even looked great too. Both of us looked and dressed and had our hair fixed as if we were back in high school. Remember we're 7 yrs. apart so we didn't even go to high school together. Anyways, we danced thru the halls stopping at the occasional room as Wendy would tell me who needed praying for. Perhaps, I'd needed prayer for having such a trippy dream.
Or maybe not. Maybe it was the answering of another prayer. Had I prayed to be able to dance? Well actually, yes, but not recently. I'd prayed for Wendy's homecoming to be a rejoiceful one. And for those left behind an assurance they'd see her again. Had Wendy passed last night? No. Still hanging on. What up, buttercup? Everyone's said, bye. It's all gonna be okay. But, this girl is a fighter. And having fought so hard for so long . . . letting go might prove harder to do than continuing the fight.
The fight continues in 'Not Giving Up' - coming soon to a computer near you.
Monday, June 14, 2010
What we do know is this okay day followed by dinner with friends and a shopping expedition for a larger swimming pool brought about nothing but work to be done on Saturday. A 24 ft. round above ground pool meant we had us some hard core excavating work to do. Guess what? We still do. Any volunteers? We're hoping to be ready for water by next weekend. Until then, my Aunt's local hotel pool and their many, many occupants will get to know the Spindlers - probably all too well. Thank you, Jean! We love ya!
I wasn't allowed to do hardly anything to help. No dirt moving. No sand unloading. But just that I felt like being out in that horrendous heat to do a little bossing --- welllll, that's what I do best anyways. I did manage to pick up a few branches and trash unnoticed. So there, Jason! And having been told to return to the house, I may have even snuck in shooting a basket or two.
That said, when Sunday morning rolled around all four of us had trouble dragging ourselves out of bed. But we made it to church, by golly! Sadly, we didn't get to stay for the entire service. To explain I was sitting in the pew with my nephew who was playing with small farm animal toys. I might have been too. Truth be told those little toys reminded me of Farmville and of how I had crops at home that needed harvesting. So I just got up and walked out.
Huh? Not hardly. Yes I was reminded of Farmville, but no that's not why we left. I had bent over to pick up one of the toys that had fallen off the bench. When I had I lost my breath and was unable to get it back after several attempts at coughing. So as he dropped another animal I quickly dove for it, hoping I'd also find the breath I left there on my previous visit. No such luck.
I gasped teary eyed, and apparently beet red looking over to Jason for some sign of what to do. He mouthed, "You okay?" And I mouthed back nothing as he got to his feet to help me out of the church. It truly must've been Jason in front of me and God behind cause I was blacking out the entire trip. It was as if I'd floated to the back of the church.
Then to the water fountain. I couldn't swallow. SHIT! That scared me. Then to the bathroom in an attempt to get something up. Mucus, snot, puke, a dinosaur bone - I apologize for the absurd graphic nature of this post, however I needed desperately to make room for some good 'ol fashioned air at this point. I seriously blacked out enough here to rest upon the sink awhile and flash back to my dad's last breaths. They had been so labored. I prayed, "Please, God! Please don't let me die today."
With that I returned to the hall ouside the restroom to a very concerned, very good looking husband. He wanted to take me to the Emergency Room. And a concerned church-goer insisted I needed oxygen. I just needed to cool off I reasoned to myself, and besides, God wasn't gonna let me die today. I just asked him not to. So Jason returned to our pew for my purse and knocked on the Sunday School doors for the kiddos. Air conditioner full blast and we were on our way home.
Still my breathing was sporadic and my color more of a fuschia now versus the crimson red it had been. What was going on? Would it pass? There's been times I've struggled with swallowing. But always before I either manage to choke it on down or expell it and go on about my intake of oxygen. With no foreign objects at play inj this scenario - I became somewhat frightened. Did you know respiratory failure is among the top recorded causes of death among MSers? Well, you do now. And that, for me, is scary as hell!
Once home and cooling off I still succumbed to moments of a heavy drowning feeling. Bizarre. After having pissed all my docs off, who would I turn to about this latest ordeal? Maybe I hadn't pissed anyone off. Maybe I just didn't want to hear the "I told you so!" that I was sure to from all my holier than thou p.h.d.s. So speaking of holy and knowing in my heart of hearts this was just an episode brought on by overdoing it in severe humidity - I decide to share this problem with only one. God. "You've got me home, God. And I thank you. Now please get me thru. Amen." And a cold coke and some warm, carefully sipped soup later - I was doing better.
Now the question can be asked, what exactly had I been praying to get thru? Most likely, I had been asking that He help me thru whatever this spell was I was having. Possibly, though I could have meant my MS. Or maybe I meant this CCSVI fiasco. Do I have it, or don't I? And would my most favoritist doctor of all ever answer my e-mail?
A game of Yahtzee! and a Dominos pizza later, I needed a Farmville fix. All was again right with the world. Praise God! As soon as the computer was up I noticed I had a rather large number of new e-mails waiting in my inbox. Perhaps I should check on that before I get my boots all dirty farmin'. And there he was! My knight in shining armor had taken the time to e-mail me back to reassure me everything was going to be okay.
As goosebumps form as I'm re-telling this miraculous story of a super doc responding to a silly little 'ol worrisome nobody like myself, I can't help but wonder if he'd been compelled to write this message to me anywhere around or near the time I'd ask God for help. Just puttin' that out there people. I believe! And there is no doubting whatsoever that without God, none of this would be possible. I love Him. And praise Him. Everyday.
And as for the messenger . . . I hold you in pretty high esteem too Doc. You truly are an instrument of God's. Your caring and compassion is monumental. I can't wait to finally meet you. You who have told me you believe whole-heartedly that anyone with true MS has CCSVI. You who have told me that docs just have to know how to look for it. And what to be looking for. I told you my story and you told me you feared that would happen to many more of us. You seemed confident you would find what my doc could not (or would not).
So you say this may well be the best thing that's happened to you in your medical careeer. I, dear doctor, can guarantee you are the best thing that has happened in mine. Thank you for writing me back. Thank you for all you've done. All you're doing, and all you plan to do. Next venogram I have will be done by you. I can't afford anymore unsure explorers . . .
You got my number, right? I'll be by the phone.
Saturday, June 12, 2010
In the US, the money was awarded to 3 "insider" researchers--neurologists and doctors who are on panels, advisory committees for the NMMS, and have received NMMS monies before.
An MS patient of Dr. Aaron Miller's (head neurologist of the NMMS) made this post on ThisIsMS.com tonight-regarding the study--
"I saw my neuro last night. He is the head NMSS neuro, the one who opened the panel discussion at the AAN meeting in Canada in April by saying we all know MS is an autoimmune disease.
He mentioned to me that today was the "big day", and that the studies being funded were diagnostic, not treatment based. I said, ....to prove Zamboni's theory he said, .....no, to disprove it."
So, now we know where we stand. Dr. Miller has made it clear. The research grants have made it clear. The line has been drawn in the sand. These studies are being funded to disprove Dr. Zamboni's research.
Where does this leave us? I believe we are now in the drivers' seat. We are not passengers in the MS Society mobile anymore. They have given us a very clear response. Now we take our money, our influence, and our power for ourselves. We use the connections we have made across national boundaries and languages--here on the internet--we organize and we mobilize money and research and treatment. We work with the vascular doctors, we work with the IRs, we support Dr. Zamboni and all of the brave, pioneering doctors who have taken up this challenge for us. We can do this.
I will not tell you how to donate your hard-earned money and volunteer hours. That's not for anyone to decide but you and your family. But I will tell you that the National MS Societies are not the end of this discussion. Neurologists can disprove Dr. Zamboni's research as much as they want. They cannot change the reality of an IR finding bilateral jugular stenosis. They cannot stop a vascular surgeon from encountering venous reflux. They cannot change a research paper written on discovery of CCSVI in 95% of pwMS. They cannot diminish my husband's return of energy, ability to hike, bike and ski after angioplasty. They cannot change the reality of the hundreds of patients finding symptom relief and remission from their MS. And they will not stop us from speaking out and looking for the truth and healing. Using science, and medicine and our God-given gifts. They may have some money (well, maybe less next year...) but they cannot buy the truth. The truth is free.