Huffington Post article reader? More information for you!

Hello everyone! Long time no write, I know. I've been considering a return but wasn't sure about it. Then today I received a message saying they read about me and my service dog at Huffington Post and wanted to wish us well. I was completely confused as I had no idea what they were talking about. I went over to HP and did a search, and sure enough an article was done about us a few days ago! I posted a comment there, providing more information about Shelby and my medical information that was left out. As promised, here is the old post I said I'd bump back to the top. I'll put a little bit more info in brackets:

Huffington Post Article about Shelby and Her Person!

Here's my blog post from Apr 2009:
For anyone late in the game, my Rhodesian Ridgeback [-Belgian Malinois mix] Shelby has 2 certification levels already, and is currently working on her 3rd. She is my assistance aka service dog. Due to the nature of my disorders, she has to cover a lot of needs. She is not only a mobility assist dog (when in scooter, she will retrieve dropped items, open doors; when in manual chair, retrieve items off shelves, you get the idea). She is on seizure alert duty 24/7; this is a tough one because of my seizures often run back to back.

I have a couple dozen seizures a day [multiple tests finally determined there are over 100 daily; they stopped counting at that point; they are due to arachnoiditis; scar tissue from multiple failed brain surgeries from Chiari Malformation complicated by Ehlers-Danlos] but on one particularly extreme morning, my husband took a great picture I am going to share here that I feel shows well the relationship between an assistance dog and their person. Shelby normally sprawls across my lap a few minutes before a seizure starts to prevent me from going anywhere, falling, and getting injured. That morning though instead of sprawling on my lap, she tucked herself up against me, face to face. She stayed like this for more than an hour, until it was over. [They often occur 2-3 minutes at a time, with just a few minutes in between, so they often appear to be quite long without a break, and the entire time I can still be a danger to myself as I don't quite get my mental clarity back.]

March marked one year since we rescued Shelby from the Humane Society, a brutally abused one year old girl, terrified of her own shadow. I'd never had a seizure then, and my husband and I thought we were crazy for going from 1 little old Yorkie Wolfie at home to 3 dogs (that day we adopted not only Shelby but crazy Border Terrier Gizmo). We were drawn to Shelby and our hearts knew we had to bring her home. A month later, my illness progressed into seizures and I’ve had them daily ever since, and she could detect them before we could. It took some time before we figured out what the heck she was doing.

Now we know why Shelby came into our lives a year ago. Funny how that happens isn’t it? She is one of the best things to ever happen to us. I don’t think we rescued her, but maybe in a way she rescued us?




If you look at the difference in Shelby's ears and eyes in the pictures, if you are a "dog person" you will really see her emotions. The bottom one is what we call her happy face, her Shelby smile. She was a happy camper hanging out at the local coffee house, ears all perked up. The top picture, her eyes and brows were furrowed and downcast, her body curled up into me, worried and waiting for everything to be over.

Seizures, Kidneys

I get out of the house on Thursday, wahoo! I need to schedule the city's SunVan (disability services) to take me to my neuro appt. That's lousy. That'll be around 3 extra hours of waiting time, which makes it likely I'll have seizures in public. There's also the chance of my chair dying, because, well, my chair is on its last...wheels, and there's nothing I can do about it. This may be the last time I see this neuro. Depends on what he does for this neuropathy. Then I'll cross the parking lot, pick up records at St. Joe's re: my several days of seizure testing (showed I have over a hundred a day), and records for the 5 days I spent in for the unexpected kidney surgery. I'm supposed to set up an appt to see a neurosurgeon at UMC regarding seizure surgery. I was also supposed to see a nephrologist (kidney specialist) last year and never did. I learned my lesson, since now my cardiologist is also in agreement that I have to see one, since he now has come to the conclusion that the problems are due to my kidneys not working properly.

Still, all I keep thinking is that I get to get out of the house. I'll take a crochet project. Shelby can keep me company. S helped me with a shower last week so I'm not TOO ripe as of yet. It's not like it's been 4, or 6, weeks like normal, right? *gags, blushes, ashamed* But that's life. It's hard to shower, even when someone is doing the washing for you. I still try to wash some of me myself while he does the rest, and it's exhausting and hard to breathe. It's a Godsend having a DH who can not only get things done but keep me focused on combat breathing at the same time. Know anyone who is home-bound? Jot them an email or even just an e-card. Let them know they haven't been forgotten. You will make their entire MONTH. I promise. Could stop a trail of tears.

When the kids came home the last day of school before break, they brought home the usual Easter Vacation activity packet, including a slip regarding an Easter egg hunt at the park, sponsored by Oasis. I was a bit surprised. I had wondered if they closed & joined in with another church or something. We did not receive the standard Christmas card, financial statement & voting thing that all members get every year to review, & we did not receive birthday cards. Between all of that, I guess we have received our final answer. Interesting. I was taught in class the only way members are removed is if they move and let them know they have settled in their new location and have found a new home church; the alternative is not a good thing and last I knew, had only occurred once which was when a membership was revoked due to a person's actions after leaders tried very hard to help the person; unfortunately, you can't help a person who does not want it, and the behavior was not going to stop. Our situation (reposted below) is nothing of that sort, and doesn't seem fair we get blacklisted.

*Pics: My daughter, age 9, won the drawing for an Easter basket at the local credit union. Awesome!

Pic of me. My hair is longer now but am ready to cut it off to this length again because of the massive itching all over. Having hair touch my skin makes it that much worse, not to mention it's the desert in late Spring and it's only going to get hotter. I shouldn't even be complaining already! Zipping my lips (appropriate for a zipperhead, yeah?)!

church's & society's bastards

**This is a repost of a blog I originally wrote 2/13/2011, so I will remove its original location and move the post.**

For many months now I have wanted to write this blog. But it will be long, I hate thinking about the situation because it's haunted me daily for a year, and no doubt I'll have a bunch of seizures while writing this. That means writing it in a .doc over many days, after which come more days of editing between seizures. So I've been putting it off for physical reasons but honestly the emotional hurt is even more difficult.

I can't believe a year has gone by, yet I am not the least bit closer to understanding any of it.(If you continue and become lost, best just stop reading, as you are not involved in the situation and I don't want to involve you unnecessarily.) In December 2009 it was announced in our home group that church was going to hold Alpha course again. It hadn't been offered for some time, since before a local church disbanded and many of the members joined us, so it was a logical decision as many would likely want to take it. While meeting at our house one week, our home group leader said that whatever night of the week Alpha was on, it would be in place of group each week. The class lasts around 3 months.

I had a few concerns and shared them with DH (web-speak for "Dear Husband") first. It's pretty well known I have trust issues, so speaking with DH first would not surprise anyone. At one point even the home group leader said that given my past, it's surprising I trust anyone at all. I trusted her and that meant a lot. Not all of my issues are trust though, some of it is being self-conscious and feeling like a failure, because none of these people know me from before I got sick. I was a typical type-A personality, total over-achiever, graduated high school in two years, did two undergrad degrees at the same time, and completed a 4-year Master's program in 2 years, receiving it the day after getting out of the hospital from delivering my first baby, having done night classes after teaching middle school by day, reaching tenure by early 20s. But I shared with DH that 1) I was still extremely self-conscious about all the complex-partial seizures I had every night, including during weekly home group. During one group, people were kidding around and one of the guys made the comment, "Hey K gets to sleep at home group, why can't I miss things too?" I was stunned speechless. There are some pretty big differences between sleeping and seizures. My brain is full of scar tissue from arachnoiditis, the result of a 9 month bout of meningitis; the scar tissue grows 24/7 and is progressive, it will always grow, continuing to tangle up my brain, disrupting processes along the way. He added reason #5320 I have problems trusting people, even the ones who are supposed to be friends. I also told my DH that 2) I have taken the class multiple times and have also assisted our pastor with it. 3) We wouldn't be able to afford a baby-sitter. Having home group at our home was a blessing, a) as our kids were the youngest of anyone's in the group, so they could get to bed on time, and 4) with the seizures I was in my home with Shelby to alert, a cabinet stocked full of meds I didn't need to pack up, and only a few people had to see the seizures. Alpha was offered to the entire church, scheduled at a huge room at the local community college. I could not get the nightmarish visions out of my head, the entire church watching me having complex partials and tonic-clonics, drooling, waving my hands around, instead of them concentrating on Alpha, wondering WTH was wrong with me, or like P did, thinking I was sleeping off and on every home group, and c) when I have seizures at home I have a safe place, unlike a community room 5) Gas money. We have none. Our two credit cards, which were for emergencies only, are now about maxxed out because the woman who ran over DH, her insurance has not reimbursed us yet for the ton of medical bills we had to pay to keep out of collections. 6) Too physically difficult to get ready.

At home, it's easier to hide that I don't get dressed most days because it's so difficult. Ever had a hard time dressing? Showering? What if you couldn't shower but every couple weeks? Try it. Let me know how you feel about yourself. I am guessing no healthy reader is going to take me up on my offer, but, I'll hope. Maybe someone will surprise me, like on that TV show 30 Days.

Toward the end of the year, two weeks before Alpha began, Home Group did their first house rotation since we joined them. It's normal to swap houses among group members every couple months, or quarterly, or whatever is decided. The two meetings were to be at J's house, which would have been great, but the swap was done toward the end of December, a notoriously crazy time at school as it brings the end of the quarter. Both of the kids had activities during both of those weeks: a performance and a parent conference.

When I wrote the home group leader to let her know about the scheduling problems, since I wasn't ever sure where she was going to check her email, I sent the emails to both her work as well as her home address, same as I always did, though I always was afraid I annoyed her with my double sets of emails. But I figured it was better safe than sorry and be sure I reach her. I emailed her about both those events and apologized that we couldn't come to Home Group; I also included a prayer request both times. There were patients I was neuro-advocating for that were going into surgery shortly, and so it was very important to me that the Group pray for them and for their families. I'd been helping them from the time they were still trying to get a diagnosis, got them doctors, other help, fought for their SSDI, and now helping them through their surgery and recovery journey. It was a huge step.

And so, we were unable to attend Group at J's house either of those 2 weeks. We didn't think it was an issue, as everyone in Group were parents of younger kids, except one very sweet older lady. All with kids still in school missed at some point due to a school activity. It's understood.

I was, however, told it was a problem to not take Alpha again. It was said my choice to not take Alpha with home group meant I obviously no longer wanted to participate in Group any longer. It came out of nowhere, and was devastating. I could not get it understood that my choice to not repeat Alpha a 3rd time had nothing to do with the reasons she was telling me, but instead was almost entirely health-related. Yet all that was repeated to me was that I apparently didn't want to be part of Home Group any more because if I did, I would participate in the class with Group.

I was incredibly floored and so hurt, and it left me shocked, feeling I had no one to turn to, and I had to get it out of my system. I came here to this blog, which has served as my journal since early 2004. It was when I was finally diagnosed, and has seen me through nearly two dozen surgeries, learning to speak, walk, and write again--and the loss of some things once again after progression. I can't physically write much any more. The Ehlers-Danlos has great impact on my wrists, hands, and every joint in my fingers. I often can't write down more than a couple items to add to a grocery list, so this website has been a shoulder for me to cry on in my hurt for years now; it is no different as any diary constructed of paper and pen. And in my hurt feelings, lack of sleep, seizures, and pain meds taken in the futile attempt to bring pain down a little, it entered my mind for a moment about the possibility of finding another church. What was I supposed to think, after being TOLD I must not want to be part of the church family I'd been with for SIX years, just for not being able to take a class with them for so many health reasons? We were not talking about sniffles here.

Months later while talking with another friend from the church but from a different group, I was surprised to find out she didn't take the class either, because she already had in the past. Most of her group didn't take it either for the same reason, and none of them had been in any hot water for it. Apparently the class was not assigned as a home group project. Many other groups were still meeting while the class went on; it was not a group replacement as it was for mine. DH and I were effectively kicked out of group, and felt unwelcome at church because our home group leader's position at the church had me believe that her word was the truth for the church as well.

We never found another church because we never bothered to try. We spent 6 years of our lives with this church family so after this open wound, we had no desire to go elsewhere in fear of this happening again, of having salt poured on it. Running does no good. People are the same everywhere. In the late spring I spoke with J again, whom I had considered a friend as well as fellow home group member. It was during this conversation when I learned the group leader told everyone several months back we had decided to leave the church because I mentioned it one time on this blog, but she told them that we had done so way back in December, before Alpha even had a chance to begin, before home group changed from our house to J's. J shared they were told that we took off before ever even going to her house for Home Group the two weeks before Alpha. It sounded like J had been living with hurt feelings those few months before I called, due to the home group leader's actions.

My jaw hit the floor. When we got off the phone I cried. I could not believe that all those months, J had been under the impression that DH and I chose to leave immediately after meeting at our house and that's why we never came to her house for the two weeks Home Group met at her house before Alpha started. I shared with her about the duplicate emails sent to group leader's work and home for both weeks, how we were at our children's school activities two weeks in a row, and how we sent greetings to everyone and prayer requests both times. The group members had not been informed of any of that information. It really felt like a kick in the head. I don't understand why that was done to us. Now we have not seen the others in Group for over a year, because they think we "took off" and abandoned them.

Toward the beginning of our conversation I asked J why no one ever let us know the day and time of Home Group so we could start attending after Alpha was over. She said that my blog awhile back had said we'd thought about finding a different church, so obviously we made up our minds. That really bothered me. I reminded her that this blog, like I shared earlier, is my journal, a diary. In an upset--and extremely hurt-- mood I put down some time ago that maybe we ought to look for another church. But did we? No. It was something I wrote down to get out of my system, in the middle of a lot of other things going on as well that also impacted me. Know what? Eight or nine years ago, desperate for sleep, I told DH if he didn't see a doctor about his apnea, I was going to cauterize his tonsils myself with a soldering iron while he snored. Did I actually do it? No! But I felt better once it was out of my system just having said it. I didn't even know anybody had read my blog! Nobody ever said anything. No one acknowledged reading about my innermost thoughts and fears, not even at home group; when it was asked if anyone had anything to say, and I always kept quiet and they knew why I was afraid to talk to others but knew I needed to because of serious problems going on, they remained silent. What if all of us were at home group and one of the others, let's say M, shared the thought briefly crossed her mind to look for another church because she was frustrated. I can guarantee the group leader would NOT keep quiet and just let M walk out the door. So don't say a word as you go open the door for K, just give her a kick in the ass on her way out.

Let's forget about that I've lost count of all the people over my 6 years there who discussed changing churches because of their frustration, hurt feelings, or downright anger. They would bring it up to their home group that maybe a church swap would fix things. Nobody got the boot. Lo and behold, their home group family--yes, home groups are supposed to be FAMILY, at least they are supposed to be--would ask why they were thinking about changing, what was troubling them, and how they could help. Nobody, until DH and I anyway, have been shown the door without so much as a word.

We get the point, we aren't missed, we get it. I picked up on that a long time ago, but DH was holding on. When I was unable to go, he would come home afterward and tell me who came up to him after service, ask about me, and ask what they could do to help. Every time, for over a year, he always said, "She's home, just an email or a call, that would really make her day!" And they all would say they would either come on by for a few minutes on their way home, because hey they're free for the morning anyway, right? or they'd "definitely" call or email soon.

Do you know how many of those people followed through? None. Zilch. DH would rush home and say, "* said they're swinging by in a few minutes, I've got to straighten up real quick!" and he'd rush around tidying. For nothing. I'd use up my energy and spoons for the week help with what I could. For nothing.

It used to bother me, how no one showed up, how I forced myself to stay awake because someone was coming over. Every time it happened, I became smaller. My self-worth, my esteem, my self-confidence, all the time, smaller.

But you know what bothers me now? It's not them. It's something DH said not too long ago that ripped my heart out. "I'm sorry I kept going for so long, and gave you false hope."

After 23 surgeries the last few years I've come to the conclusion those of us diagnosed with serious illness do not belong anywhere. We're the bastards of society, of groups that don't really want them. They pretend to for a little while, but they really don't. We get that pity stare, the pity hug, then we slowly get pushed away. And we feel every...single...fucking...inch. Got that? Good. Don't forget it. Forget me. It's fine. But don't forget that. If the woman at Oasis who admitted to me she never called or came by because she couldn't handle seeing what my illness is doing to me, if you are reading this: we NEVER get to stop seeing what it is doing to us. But hey, as long as YOU get to have an easier time with it! I have thought about that comment every damn day and sleepless night since you said it, but I wonder if it has even entered your mind again?

The church best deals with people with short-term issues like non-life-threatening surgery or a baby delivery. My friend Tammie says it best, that people like to do something quick and easy, like deliver a meal, be done with it, and pat themselves on the back for having made a difference. What to do about the person whose spine, brain, joints, and organs are slowly rotting away? It poses a much different challenge when someone is in surgery every couple months.

The pastor teaches a class through the church, and it says that if a member is in the hospital for 2 days or more, they should be visited. You should sit down so you seem comfortable, not standing because then you will seem nervous. Hmm. I'll give the benefit of the doubt: 16 of my surgeries have been local (the rest out of town and/or state) and I've seen him once, the time I had to have him called to get him to come and it was so quick a visit he stood aloft only briefly, speaking of the superficial. How about all the other times? If he could not visit, how about a call? I have spent weeks in hospitals crying myself to sleep at night, afraid and alone.

Where has everyone been for DH? Who has been there to comfort him, especially at the really bad times? It was the hospital's chaplain who stayed by his side, DH having been told I would not make it through the 12 hour shift, not after DH and my mother witnessed me having CPR following one of two cardiac arrests that left me on a ventilator, unresponsive, unable to breathe on my own.

I have learned life is a series of battles, every single day: a battle to stay alive, to get appropriate care, to be taken seriously as a woman using a wheelchair, to have it understood that I have a disability, I am not a disability.

A friend who is a church member--a person who left for quite some time though eventually returned-- suggested to the pastor that we need a home ministry to check on and help the home-bound. He agreed and told the person to go for it and sent her on her way. The person didn't feel any support was offered, just told to go do it, and thus she was unable to continue. It couldn't be done solo while working a job and caring for children. I completely understood her point of view. So many people that were members when we joined, or came around the same time we did, have left. I emailed all of them to see if they were ok and if there was anything I could do, but I couldn't keep up with it on my own. Many were grateful just to hear from someone. Some returned because of it. How many others would have returned if people would reach out and show they care, instead of just letting people disappear? There is a serious problem here and I hope it will not continue to be swept under a rug. A whole being, once full of hope, seems to be drifting away, but sadly too many have already scattered the wind and it seems an issue no one is willing to truly acknowledge and deal with.

And so, DH and I continue on with our lives, feeling unwelcome and unloved, wondering if her actions as a home group leader were representative of the church and how they really feel about us. It's painful, painful.

It's 6:47 a.m., I'm still away, unable to sleep. Time to at least let the body rest even if my mind cannot.

Spine in my Esophagus

I thought I'd heard it all. I didn't think there was anything left a doctor could tell me that could surprise me any more. Wrong. I have been seeing a spine surgeon because of my hands having difficulty gripping and picking up things again, especially the left one. My c-spine hasn't been checked in a little while so it was time for a look anyway as that's the area that controls the hands, though there was the possibility of it being scar tissue growth blocking up the arteries and nerves again for the Thoracic Outlet, so one step at a time to rule things out.

This group of doctors has their own MRI so I was able to get in pretty quickly, and get back in for results a few days after that, which puts us at last week. Let me explain just a little of what you are seeing: you will notice that the spine consists of vertebrae that basically look like little square boxes. Sure, the lines are a wee bit sloppy, but squares all the same. You with me? Now look underneath the hardware. There are two squares there that are WAY out of whack. Both of those squares have one side that is nothing like a straight line. Instead, there's a huge pointy object sticking out of each vertebra. That's not normal, nor is it good. Those points are shoving straight into my esophagus. Directly on the other side of the vertebrae, my spinal cord is being shoved into. That isn't news, but it has definitely gotten worse.

I now have an explanation why my hands have progressed. I hate it but having Ehlers-Danlos and so many surgeries means when part of me isn't working so well, whether due to EDS or because it's been worked on, I've learned to use others to get by. There is no use wasting time whining about it.

The progression in the spine doesn't surprise me. That my esophagus has pointy pieces of bone pushing it in, yeah that came out of nowhere. The surgeon and the PA explained this is why my voice cracks so much, why it's scratchy and has to be cleared a lot, etc. It makes sense, given I have a spine in my esophagus.

The spine surgeon is calling one of my other doctors to set up a spinal cord procedure. We'll see. I don't know what to think. It's really a temporary band-aid but I have to try because I can't keep like this. I don't know how long my esophagus can stay like this though and that's another big concern.

Urology Man

I called my Urology Man's office yesterday and they overbooked the schedule to get me in today due to the issue.

Long story short, the appointment was typical. Another day, another prescription, another test at the hospital. I can't say I'm surprised, unfortunately. I'll fill the script tomorrow while S and J are here. Uro Man warned me it lowers blood pressure so I don't want to be on my own, given my BP crashes anyway.

Things just basically suck. There was however one neat thing about the appointment. Urology Man (who knows more about Ehlers-Danlos than every doctor I have ever seen with the exception of TCI/NY) had trailing him a young woman who was a family practice medical student.

Uro Man, while documenting my situation on his laptop (and there was plenty of it given it's been 2 years since he did my bladder surgery), asked me to explain to the student about Chiari and EDS, the EDS especially. He told me, "I learned about it in medical school in New York but you have taught me the most."

I am really touched by that.

So, the two of us had a talk, and I am really grateful to have had the opportunity (though I wish I didn't need to have the unexpected appointment in the first place). She listened intently about the CM, EDS, and the connection between the two, etc.

The last thing I told her was I hope she will never have an EDS patient because, well, we're a mess.

Sean Astin's connection to Chiari and Syringomyelia

Please go to ASAP to listen to Sean Astin's PSA (Public Service Announcement) regarding Chiari Malformation and Syringomyelia. Astin is known for The Lord of the Rings trilogy, as well as movies like Goonies and Rudy.

Loss of a great man

This is near and dear to my heart, doing committee work at ASAP. They are a tremendous group, providing major funding and grants to Chiari and Syringomyelia research:

Don White, Co-Founder & Chair Emeritus Passes Away

It is with great sadness that we inform you that Don White, Co-founder and Chair Emeritus of ASAP, passed away on January 02, 2008.

Together with his wife, Barbara, Don founded ASAP in 1988. Frustrated by a lack of information and confusion after Barbara's diagnosis, they vowed to bring awareness to these little known disorders. It was their dream that no person would face a diagnosis of SM or CM alone.

Although Barbara became quadriplegic and succumbed to complications that led to her death in 1991, Don remained committed to their mission. Even while battling cancer, Don's devotion to ASAP was so strong that he continued to regularly attend board meetings.

He once said, "There was no ASAP for Barbara and me, and we were determined to do something about it. We believed then and I still believe now, that ASAP can and does make a difference in the lives of those affected by Chiari and syringomyelia."

ASAP extends our sincere sympathy to the family and friends of Don White. It has been an honor to share in the life and mission of this remarkable man. Because of his efforts, SM and CM are becoming better recognized, and our awareness and understanding of the disorders continues to increase. He has made a profound impact on the lives of many.

As we embark on our 20th year anniversary, the ASAP family is more committed than ever to seeing the organization carry on until the mission is fulfilled and a cure is found.

A memorial fund in Don's name has been established. Donations to this fund may be made to ASAP on-line or by mail:

Don White Memorial Fund

Update from doctor appt

We spent 3 1/2 hours with the 2 surgeons today, Dellon and Williams. I did some length testing there before I saw them. The results were pretty wonky as it turns out. I have a 70% loss of function of the left arm, and some on the right but it's not nearly as bad as the other side.

Dellon had a great understanding of Chiari. The 2 docs brought in another lady for her to watch and learn. Dellon drew a pic of the head and brain for her and explained about CSF being obstructed and the potential fatal impact on the brain stem, how it's a dangerous, life-threatening problem.

They feel this surgery will not be nearly as hard for me as all the others I've been through. I'll be admitted to UMH after surgery primarily because the 5 nerves and the muscle they will be messing with runs along a main artery so they want to watch for bleeds, especially with a history of hematomas and such. I'll have a drain as well but it will be removed the next morning.

Dellon asked where we were going to get dinner and drew us a map to his favorite Irish pub, Ryan's Daughter. Ok, so I grew up eating my catch, spoiled by yummy fresh food, as comes with growing up along a river and the ocean. I've got to hand it to this restaurant for having the BEST cod I have ever had in my life.

Unfortunately the snow that started sometime shortly before we woke up this morning picked up speed all day and thanks to DH's drink with dinner, I drove us back to the hotel. It's been 5 years since I stopped driving in the snow so it was a little unnerving and I thanked God the moment we pulled into the hotel parking garage.

It's been a busy crazy time since we got here since we missed our connecting flight, had to find the rental car the company didn't want to be bothered to exit the office and locate themselves, getting lost on the way here at 2 a.m. because of no lights near the tiny street name signs, blah blah blah. I had hoped to meet up with a friend and with a CM group but it's been nuts. :(

I check in at UMH tomorrow/Thursday at 8 a.m. for my 10 a.m. surgery. It should take around 1 1/2 to 2 hours.

I'll update again when I can. Thank you for your prayers!

Son's doctor appointment

I took my 6 year old son to the pediatrician this morning. His headaches used to be occasional and he didn't need anything for them. Lately they have been occurring more often than not, waking him up, and asking for something to make it go away. That says a lot to me because he gags it down, it tastes so bad, but he's now willing to do it.

The pediatrician was less than thrilled and is rush ordering an MRI under sedation. Hopefully insurance will approve it without a fight and we can get this over with as soon as possible. If it's CM we need to know, and if it comes back clear then she said she will treat as migraine. I will of course get a copy of it and ask my NY RN if she can run it by the NSG's for me.

When people back away

I am a fairly private person, don't like to feel I'm burdening others, or sound like I'm complaining. So, I have this blog, where I can just jabber away and not worry about it. When asked though, I don't have a problem talking about things.

There's been something long bothering me. While having CM/EDS and all the related secondary issues, surgeries are part of the territory. With the last several, I pretty much get shrugged off. People used to do a prayer with me beforehand. Not anymore. Now, when I send an update to them, I get messages back saying, "I thought the last would be it. What are you doing now?" Geez, sorry for having defective connective tissue that's breaking me down head to toe. I get sent off now, no laying of the hands, which gave me so much comfort.

I haven't been going to church the last...month? Two months? I lost count long ago. It's primarily because I'm in so much pain there's no way I could sit on one of those folding chairs for longer than 5 minutes now. But what saddens me terribly is being gone from a place that was so much a home, only to find out it doesn't seem to matter to them I'm not there. No calls, no emails, no drop-ins.

Would it be different if my disease had a household name, something everyone knows about? Would they understand then this time bomb that is eating us alive here, emotionally for some, literally for me. What happens to my family when I'm gone? Who will they lean on? Will the church folk think "Oh! I guess this was serious." Like all of this hasn't made that pretty clear?

Maybe they think because I've had so many surgeries that I'm just used to it. Well I'm not. No one gets used to that, not even after more than a dozen. I may act strong and brave but it's to try to keep myself calm and help my nerves.

So there it is. I know we're all dealing with things so there are no hard feelings. Some people I know may just not be ready to think about this, and too some just aren't interested and they have that right. Some can't take this. I'm the same way, but I never get a break from it.

A break. Wouldn't that be nice?

"Weird-Ass Diseases" and Mike Rowe

I had my appointment with my pain man today. He is wonderful, very compassionate and honest. First and foremost he wanted to know what happened with my trip to the neurosurgeons in New York. I told him he was right about the EMG test the local hospital did being completely wrong; I said NY redid it, and strongly suspected Thoracic Outlet. He immediately went, "Oh, no no no, you don't have Thoracic Outlet. There are two kinds of it. There's functional, and true. Functional, it's fine and people don't have to do anything. With true, it's really rare and there's a problem with the artery and diminished pulse in the arm."

I looked at him and pointed and went, "THAT'S the one!"

His jaw hit the floor. He said I HAD to be kidding. I told him about last week's appointment with the cardiothoracic surgeon and not being diminished in the arm but have complete and total loss of pulse, Doppler confirmed, the vascular doc and chest CT.

True to his nature--honest, blunt, but always willing to stick with his patients--he just shook his head and said he was just shocked I had this, that "lightning struck" me or something, that he wanted to check his books because although Chiari is fairly common, a "TRUE" (arterial) TO is very rare and he's sure there is no documentation of a patient having both combined.

My favorite quote of today though is when he said this was going down in the "Weird-Ass Diseases" collection.

Sigh. I was given a stack of prescriptions, some pain, some anti-seizure; an order to check my liver function because of all the stuff I have been taking for so long. I'll do the liver panel tomorrow. He's adding (the painkiller) Dilaudid a few times a day to take at the same time as the Zanaflex, a titration schedule to get off Topamax after the last couple years, a titration schedule to add in (anti-seizure med) Depakote. The Topamax will take a couple of months as I'm on such a high dose and I have insurance issues, and the Depakote will take 3 weeks. I plugged in the titration schedules on my PDA because one look at all the varying info, changing every few days, and my brain about had a spasm. I'm just glad at least my other meds stayed the same. I really needed that painkiller change though. Fingers crossed for pain improvement.

Tonight my show is on, Dirty Jobs. I pretty much spend my days baby-sitting my recliner. I read a lot, and help newly diagnosed patients who are sent my way online, but as for the quiet time, the only thing on tv I watch is Dirty Jobs. It's the first show I have watched since Quantum Leap went off the air--ha! Ok, I watched an episode of FutureWeapons this year but all of my friends know it's because my dear brother was on it! You can't beat that! Dirty Jobs though, Mike Rowe just gets me in stitches, laughing until I can't laugh any more and my cheeks hurt all night. In a life where laughs can be few and far between, I take great joy in Mike's sense of humor and new shows on Tuesday night on Discovery Channel (and of course I can't miss daily reruns, no matter how often I've seen them).

Site overhaul ;)

Yep, this is what happens when Chiarians can't sleep. We sit at the computer.

I overhauled my blog. Give me a break, at least I'm easily entertained and it didn't cost anything! I added some health-related blogs, though already sitting here realize there are several I still need to add. If I spaced on yours or you'd like to introduce yourself let me know. Join on in! I'll add more edu sites later after Sterling and I have our dual ortho surgeon appointment. Heh, yeah, it's a family affair. We are booked to see our ortho together for his knee (multiple surgeries) and my hip (standard EDS).

I also have a mission, since my new blogging friend Bobby (linked!) intro'd to me via his own blogspot this map that tracks the locations of people who visit a person's blog! It's like an online version of sticking a pin on a wall map. How cool is that? I'd love to have pins all over my virtual map. I put the html on my site a week or so ago and I am in love with this thing! Of course I can't go email the site everywhere and I can't send signals out, but I can profusely thank some great people for coming by. :)

So long old Chiari blog

The entire site where I had my blog is going to shut down. They are switching the blogs to another location entirely and I do not like it whatsoever. Instead of copying and pasting hundreds of posts over to here, I'm basically starting over--no worries though, I have a copy of everything I wrote!

To get things started, here is my last entry from the other site, done yesterday.

Wednesday, May 16, 2007 at 3:03 PM PDT

These were all done this morning.

We are having quite a downpour right now. What a nice change.