Chiari Malformation

Ehlers-Danlos Intervention

2011-12-26T21:49:00.003-07:00

We're watching the last few minutes of Intervention, and we are all floored by this woman blaming Ehlers-Danlos for her problems. When it came time for the intervention and the direction of the Ehlers-Danlos National Foundation came to participate and told her family that EDS had nothing to do with her behavior, DH and I were nearly shouting out cheers of support. During the show we were so concerned that it was going to be yet another show bringing attention to EDS but in an entirely incorrect manner. There is no one better to have at the intervention than the EDNF Director and I am SO thrilled the show sought him out. I hope she will be ok. She clearly has some serious mental issues.

Christmas was quiet around here. We're doing the best we can, one day at a time. Still wishing there was a way to get out of here. It would be great to go somewhere we could enjoy the weather and other things such as where C could be in Boy Scouts again (they started meeting in an accessible location here so we had to stop going; I was told if they moved they'd let me know so we could return). So C has missed a couple years of Scouts because of that, which is upsetting because there are very few non-physical extracurricular activities available thus he's out of luck. He basically has had to sit back and watch M run around and have fun. How do you explain to a 10 year old he always has to stay behind while his little sister can do near anything? What happened to the goal of teaching that having a disability does not mean you CAN'T do something...it just means you have to find a DIFFERENT way to do it! It gets hard to keep up with that mindset when some people seem set to squash and beat you into the ground time after time, but I hope we can show C that anything is possible, that he can do whatever he sets his mind to, even if he just needs to go about it in his own unique way.

Holding out Hope

2011-10-04T02:14:00.019-07:00

There comes a point in life where one realizes that if you are unhappy, then sitting around and talking about it time after time isn't going to get you anywhere. This place is becoming more dangerous all the time due to our proximity to a prominent border town, and I no longer feel it is a safe place to raise our children. I once thought I could get through anything with a local support system in place but as the physical progression continued it apparently was too much for them to handle because our church family slowly but surely abandoned us. It angers all the more since the people with leadership positions who taught the various classes related to being a Christian and becoming a contagious Christian are apparently exempt from following what they teach. So now our friends are gone, I can't work so that connection is gone, and DH no longer works for the state. The lawsuit against them will continue no matter where we are.

We have an idea of where we want to go, and are beginning to look around at jobs for DH up there. I love our house here, the big foreclosure we got for a steal 2 1/2 years ago and fixed up. I don't know if we could make money on it so soon, but we are in an area where we should be able rent it out to a military family fairly easily. I know a couple of property managers who would handle it for practically nothing each month. It's the home and layout I always wanted, but I also know I can find and make a home anywhere so I can find a place to call home again in the city/state we're interested in.

It's time to work on bidding farewell to this town. No friends, rarely any family as my parents live in Germany and DH's parents spend most of the year several hours away, and the medical care here is disturbingly poor at best and a danger to one's very life at worst.

I don't care what it takes at this point. I don't care if we have to stay in a 1 bedroom studio for a year while most of our stuff is in storage, so that we can pay off our medical debt and save for a down payment on a house. I can put up with near anything if it's temporary, knowing something better is on the horizon.

Wish us luck. It's time for us to take responsibility for our own happiness, to begin the journey necessary to make it happen.

Exploding Feet, No A/C, Heart Probs/Tests/Appts

2011-08-22T12:33:00.018-07:00

Last week it was 103 out, our a/c was dead, and it was 88 in here for a few days. The a/c was dying slowly for 1+ years and it finally went kaput. The kids and DH were cool at school and work, thankfully. Being stuck in this house, there was sweat dripping down my face. Heat makes seizures go haywire as well; one night I bolted awake with my right orbital hollering in pain. I did a face-plant onto my coffee table and smacked surrounding my eye. I wonder if it being 88 in this house had any impact on what's going on with my monster feet (read below). I thought I was turning into the Wicked Witch: I'm melting, melting...

And in other news, for the last few weeks I've been undergoing one test another another trying to determine why my ankles and feet have swelled up something fierce, looking like pigs. They are painful to move, hurt to bear weight upon, and if touched even lightly an indentation is left for ages. My kids have a name for my feet now: grool. It stands for "gross" and "cool" combined. They're kind of like a train wreck. You don't want to look, but can't look away either. My feet are normally very long and skinny, my dad always having said they were so big they could have their own zip code. Most of the time now my ankle bones aren't visible any more. Two of the doctors said to stop taking ibuprofen immediately because it may be part of why they are swollen, and may be why I've been gaining 5-10 pounds a week for the last couple months despite almost no appetite. I never knew that ibuprofen could do that and we halted it in our house right quick.

They are also concerned because my heart rate has been abnormally high at all my visits and I've been short of breath a lot. I had another echocardiogram, and tomorrow go get another Holter monitor put on. It's been awhile. It's the test where you where they put an EKG on you then sling it over your shoulder and you wear it for 24 hours. At the doctor visit for the Holter I'll also have a Venous Insufficiency exam where they'll check to see if the veins in my legs are leaking blood out of them. Tests have already shown I don't have any clots down there so that's good. But it did show my blood flow goes downward to my feet just fine, but then has a hard time going back upward to the lungs. So this test, while supposed to be a bit like the ultrasound/Doppler, instead of looking for DVTs/clots, it will see if any blood is actually seeping out of the veins themselves, which would explain my fat feet etc. On Wednesday I'll go get the Holter monitor off, and when the receptionist told me she needed to schedule me for a treadmill test at the same visit, I started laughing. I told her yeah you do that, good luck with it. Everyone I've told has gotten a laugh out of it.

It's almost 5 a.m. and my Holter and vein test is at 9:30 but I haven't slept any yet so I'm out of here. I'll attach some pictures of my (grool) ugly feet.

Return of the Tethered Cord; Identical to Stay-Puft Marshmallow Man

2011-08-15T03:40:00.005-07:00

I did go to the ER as I discussed in the post below, and as is typical, everyone was clueless. The two triage nurses, the nurse assigned to me, and the doctor, not a single one of them had ever heard of Chiari Malformation or Ehlers-Danlos. It is absolutely absurd that this is still occurring. I have been to this ER many times, as has a fellow patient that lives nearby. Jeez between the two of us, the whole dang hospital should know all about CM & EDS by now. The doctor checked the reflexes in my knees, then told me that because my "...spine was not sticking out of..." my back, that he was releasing me. Yep. There's some brilliant detective work for you. I bet he went to the same medical school as my first neurologist, who told me that because I was in my 20's and female, nothing could be wrong with me and that I would be fine if I just went out and did something nice for myself, like dye my hair.

The Tuesday following I had my appointment with the spine surgeon. He hasn't worked on me before but I see him from time to time because I respect his opinion. He checked my reflexes at the knees and feet, and was very concerned because I had none. Zip, zero, zilch. So he knew I was right and that something was really wrong. He had me in the MRI on Friday. The results were a bit of a surprise.

DH and I returned a few days later to discuss the MRI and I think we were expecting to hear something more along the lines of an injury, since I have fallen so many times lately. Instead, it turns out that everyting recently is revolving around my 2007 Tethered Cord surgery. Dr asked if I'd had a CSF (cerebrospinal fluid) leak after the surgery. Of course I did! I have Ehlers-Danlos, I always leak after surgeries, silly question! He showed me this pocket of CSF next to my L 2-3-4-5. It's been there this entire time. It was at least separated from the spine, so it is not doing any harm. It just kind of upset me that put up with all that pain after surgery from having a spinal headache for six months, when it obviously should have been dealt with. Instead, the team had me do an MRI every month to watch the size of the leak for six dang months. At that point, my appendix ruptured and I didn't know because I thought the pain was just the usual CSF leak pain. (By the time I went to the ER, they were shocked at both the condition I was in, and my demeanor. Not a good situation.) So what's been going on with my spine is not due to my falls, but it's actually because my spine is tethered again.

Yes, it's the return of Tethered Cord Syndrome. For those unfamiliar, the spine floats a little. That floating is what allows us to bend, to reach outward, and to stretch. If the spine was not able to float, we would stop being able to move our torso. We could not bend forward a couple inches to grab a dish on the dinner table; the remote control would stay just out of reach on the couch because we couldn't stretch over to get it. When the spine is tethered, the nerve roots and other tissue grows out from the spinal column, where it belongs, and adheres itself to other parts of the body. Then, when you try to move normally, your spine stops you because it basically is like the spine is trying to be ripped apart. It no longer is free floating. It is chained down and any stretching or reaching movement can cause tremendous pain. TCS can be progressive, often causing problems with bladder and bowel function, syringomyelia (if it isn't already present) which of course a debilitating illness in and of itself, sensory and mobility problems.

That is enough to deal with here. My next post will deal with a new problem, something I've never had before: my feel and ankles swelling up. My kids are calling them "grool," for "gross" and "cool." They're like a train wreck, that freaky looking.

Just Walking is Hard to Do

2011-07-27T11:38:00.005-07:00

While the vast majority of my spine surgeries have been on the c-spine (cervical), I did have surgery for Tethered Cord Syndrome (my form of TCS is also referred to as tight filum terminale) that was a bit difficult to fix thanks to a benign tumor getting in the way of everything.

For the last week I have been having excruciating stabbing pain in my lumbar region, and it has worsened daily. It has become severe enough that my DH took the last two days off work without telling me beforehand because he could see how badly things were. These last two days have been extreme in terms of pain and limited mobility. If I try to move my upper body just a couple of inches in any direction, the screaming pain makes itself known. Leg movement does the same, so walking must be done with great caution and only with small and the slowest of baby steps.

Yesterday I called the spine doctor I see here in Tucson for an appointment (I see him when I want an opinion on what my neurosurgeons in NY say) but he cannot be seen until Tuesday. I called back today and there is just no way around the wait. In the back of my mind I am afraid of there being damage to the area that was worked on for the TCS. Will I do permanent harm if I wait until Tuesday? I hate going to the ER but in the back of my hole-y head (must maintain humor, & thx to my permanent craniectomy I DO have a hole in my head) I can't help but think this time it might be warranted to make sure the EDS isn't making the spine deteriorate any further.

Ehlers-Danlos sucks.

Brain Injuries in Monsoons, & How to Anger a Plane w/o Trying

2011-07-10T02:19:00.016-07:00

The monsoon is alive & well in Tucson. The changes in the weather always do a number on my head, especially this time of year with the crazy summer monsoon storms in southern Arizona. It started after the first craniectomy, and only got worse after they had to expand it a year later. Most people with craniectomies get the piece of skull put back on at some point down the road, but having this disorder means never reuniting with the missing piece, my squishy brain missing its cover. It's pretty unnerving & admittedly a bit frightening when I'm in the car with thoughts of accidents enter my mind. I imagine my brain bulging through that hole in a wreck. That would surely feel tons better than how I feel right now though; I am 99% positive I have a small CSF leak, something I experienced with the brain surgeries, the spine surgeries, and more lumbar punctures (a.k.a. spinal taps) than I care to recall, so I am all too familiar. One of the areas that has been operated on has been giving a lot of trouble the last 3 weeks or so, and there was a sudden change a couple days ago and since that moment I've had the CSF leak-like issues. It's awful but I always remind myself of something I wrote down and stuck on the fridge: it came to pass, it did not come to stay. I'm still here after almost two dozen surgeries, and there must be a reason why. I'll keep reminding myself of that while the monsoon weather wreaks havoc in my swiss cheese brain.

In other news, the day after the kids finished school the three of us flew to Oregon to visit my parents. They moved there a year and a half ago but were about to move again, this time to Germany, and I wanted to see them before they left. Oregon was also one of the few states I had never visited, so I was particularly excited for this trip. The only downside was that my husband could not come because of not having any time off yet at his current job.

My son (DS) had just turned 10 and my daughter (DD) is about 9, so it's getting easier all the time to travel with them. Still, traveling with a brain injury and EDS is a challenge, exhausting and difficult even when I have to fly alone (I have on occasion traveled to New York alone to see my neurosurgeons). Getting through security with the kids is the hardest part though, guiding them through, keeping a watchful eye with the seemingly constant chaos that is the TSA, and getting myself through is difficult, plus playing swap-a-cane. TSA requires the use of their wooden canes since private ones must go through the scanner. Some airports I've been to had TSA security without their canes at every line, causing a wait for the disabled.

We had a smooth flight from Tucson to Denver, my kindred spirited but timid- and afraid of heights- DS grew more confident about gazing out the window from time to time. We boarded the flight from Denver to Portland, and moments after take-off I knew something was not right. I was doubled over with constant abdominal pain and nausea. We were in the very last row of the plane, the row nobody ever wants (this famous hysterical letter from a plane passenger to an airline is awesome). I writhed in my seat, trying to not moan or cry for the sake of my children, focusing on my breathing exercises and wishing the fasten seat belt sign would hurry up and turn off so I could get into the bathroom. I spent probably 2/3rds of the flight in the bathroom, vomiting and feeling the need to urinate but as anyone with kidney stone experience knows that instead of peeing, you just sit and have spasms. I spent the flight going from my seat to the bathroom, squeezing out in labor-like contractions a total of 5-6 drops of urine the entire 2 1/2 hours.

The attendants were kind, swapping out the barf bags regularly. They remembered seeing a doctor's name on the passenger list so they went to talk to the person. Sure enough there was a young female doctor on the flight and the flight attendants had her come check on me. By that point I was so severely dehydrated that I couldn't keep any drinks down and had a hard time speaking because my gums, tongue, and lips were so dry and they all just stuck together, making my speech rather garbled and hard to understand. I told her how I'd had a CT scan the day prior to see if I had stones again (I had kidney surgery in September after 4 days in the hospital with marble-sized stones blocking anything coming or going out of my kidney, getting it swollen and infected). The doctor felt I did likely have stones again, and the altitude was bringing them down quickly. She recommended I go straight to the hospital after landing, as I couldn't keep anything down due to the dehydration, and the possibility of another kidney infection. And as always with Ehlers-Danlos and severe abdominal pain, aortic dissection has to be ruled out right away. The flight attendants asked if I would agree to them calling the cockpit and updating the pilot of the situation so that he could request an ambulance to meet us on the ground at the gate, and I agreed. At that point, I was in such horrible pain I could not even imagine not going in for help, or delaying it by doing something like picking up our one bag at the baggage claim and then having my parents drive me to the ER. I knew I needed to go straight there from the plane.

After what felt to be one of the longest flight of my life, we finally landed. As we taxied toward the terminal, my children were excited as they cried out, "I see the ambulance! It's right there!" I groaned but was relieved help was on the way. The passengers were unbuckling seat belts and shifting around when the flight attendants came on the intercom, asking everyone to please stay in their seats because paramedics needed to come on board to remove a passenger with a medical emergency. Sitting in the last row, I could see everyone looking around as the paramedics came on, pushing the airplane aisle wheelchair (funky narrow thing). They got me loaded up, took my bags, helped my kids, and went out into the gate seating area.

They had me sit in a seat there, where there were a bunch of other paramedics, airport security, and Portland police. They called my parents who were in the baggage claim, and told them to pick up a security pass waiting for them so they could come up and get the kids. My poor mom, at security TSA wanted to go through my Mom's purse, do a pat-down, go talk to her, etc. They said it was luck of the draw. She was ticked and told them she wasn't flying, look at her pass, her kid was on a gurney right down the way! Sheesh. Anyway, my blood pressure was low, among other things, and they set up IVs right there at the gate.

The care at the hospital was awesome. I was seen by 3 doctors in my room in under 5 minutes. They did my tests themselves right on down to giving me nasty potassium drinks at discharge because my levels were still low from vomiting for so long. They came for updates on me constantly. They were fantastic with their knowledge of Ehlers-Danlos, thus I had multiple levels of ultrasounds to make sure wasn't having aortic aneurysm which kills people with Ehlers-Danlos. They also diagnosed ovarian torsion, something I wasn't expecting. They did a great job tracking down someone in Tucson who could tell them the results of the CT scan I had the day before; my flight was on a Saturday, so the imaging center was closed. They were able to find out I did indeed have multiple stones. There is no reason they could not have told me while I was there. It was right in front of them, while I was there, in the machine. Instead of marble-sized ones though, this time it was the size of two marbles put together.

I did learn a couple things from this experience. When 300 people have to wait to get off a plane, they aren't happy people. I feel like I ticked them off in one fell swoop without even trying. And flying at 31,000 feet writhing in pain,vomiting uncontrollably

I did learn a couple things from this experience. When 300 people have to wait to get off a plane, they aren't happy people. I feel like I ticked them off in one fell swoop without even trying. And flying at 31,000 feet writhing in pain, vomiting uncontrollably, is not only awful but it made me feel incredibly trapped and frightened. While the kidney stones were certainly awful, had it been an aortic dissection, it would have been too late. I'd say I was being watched out for, with all of the people that were there to help me along the way.

Osama Bin Laden

2011-05-02T04:39:00.017-07:00

Shoot and let God serve as judge and jury!

There goes the FBI 10 Most Wanted List!

Blessings to the 40 Navy SEALS and a giant hug to my brother, a Lt. Colonel not only SpecOps himself, but also in charge of coordinating SpecOps planes for a branch of the military. I knew he would be gone all week on TDY, but didn't know where of course, we never do (he has a wife and two little boys). I normally don't even know when he's gone as he sometimes leaves with little warning, living on the beeper. I knew he was heading out because a close relative passed away, someone we lived with for a long time as children and helped raise us, important to us throughout our lives. He could not go to the funeral due to this TDY--but given what has happened, I know the loved one we lost would understand, and was watching over my brother during this unforgettable situation.

Sticking my neck out

2011-03-11T02:59:00.003-07:00

I've been hearing from people about my post below. I know it's bad that people who know nothing about spinal cords are asking what's going to be gone because surely it can't be left like that, right? Well folks I wish I had an answer. We know it's dangerous. Vertebrae shouldn't develop a sharp point, and that point shouldn't shove into the esophagus. We know now it's why I'm always a bit hoarse and have to clear my throat a lot, and why my voice breaks when I talk. As if being in a car isn't fearful enough, now we add this. A fender bender to most people is little more than an annoyance, when they come right down to it; to me it can easily be fatal because of the Ehlers-Danlos. Now did someone, the Devil, I don't know, add just one more thing to threaten life, seeing if I can be pushed right on over the edge? I'm getting darn close. No one wants to go fix anything because I'm such a liability. I'm a very scary person, you know. I ruin surgical statistics with the bat of an eye!

Anyway, I'm having a small procedure in a couple weeks, on the 28th. Thankfully it's at 10 a.m. so I won't have a tremendous time to go without eating or drinking, as I can't have either in the 4 hours prior. Ugh. Nerves alread. I am grateful to Jackie as she's coming along. It's 3:30 a.m., time to get my 1-2 hours.

Some birthday gift. Yep, it's being done on my birthday. But hey if it turns out great, I don't care WHAT day it's done on!

Spine in my Esophagus

2011-02-22T14:48:00.007-07:00

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.

church's & society's bastards

2011-02-13T22:04:00.005-07:00

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 multiple days, after which come days of editing between seizures.

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.) 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 our group each week. The class lasts around 3 months.

I had a few concerns and shared them with DH 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 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 meeting, 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 scarring 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. My home group mate 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. 4) 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 b) 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 community 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, 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) if one changed from tonic-clonic to gran-mal I would 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 two 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 the end of December, a notoriously crazy time at school. Both of the kids had activities those couple weeks: a performance and a parent conference.

As always 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 her work as well as her home. 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 these people.

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. All with kids still in school missed at some point due to school activities.

I was, however, told it was a problem to not take Alpha again. I was told that my choice to not take Alpha with home group meant that 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 had nothing to do with the reasons they were telling me, but had everything to do with the multitude of reasons I discussed above. It is almost entirely health-related. And all that kept being repeated to me was that I apparently didn't want to be part of Home Group any more because if I did, I would be participating in the class with Group.

I was so incredibly floored and so hurt, that after a few days of sitting in the shock, and having no one to talk to, I had to get it out of my system. I came here to this blog, which has served as my journal since early 2004. I can't physically write much any more. The Ehlers-Danlos has great impact on my wrists and on every single joint in my fingers, I often can't write down as much as an address, so this website has been a shoulder for me to cry on in my hurt for years now, the same as any diary with paper and pen. And in my hurt, I wondered 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?

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 were in no rush to go elsewhere in fear of something else happening, of having salt poured on it. In the late spring I spoke with J again, whom I always 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. J shared they were told that we "...took off before ever even coming to my house for Home Group the two weeks before Alpha!"

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 considered 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 we might look for another church. But did we? No. It was something I wrote down to get out of my system. Know what? Several years ago, desperate for sleep, I told DH if he didn't see a doctor about his tonsils and apnea, I was going to cauterize his tonsils myself with a soldering iron during his sleep. Did I actually do it? No! But I felt better once it was out of my system having said it. So they read it (I didn't even know1g is just one more site for her to read, and she didn't want more than one site to read), and immediately felt well fine be that way have a nice life. I found that incredibly...no, not rude as other friends have said, but it is just incredibly sad and pathetic. I proposed the following: What if all of us were at home group and one of the members, let's say M, shared the thought that briefly crossed her mind to look for another church. I can guarantee that the group leader would NOT keep quiet and just let M walk out the door to find herself another church, all because she said it out loud which apparently shows she really means it, according to leader logic. So don't say a word as you go open the door for K and give her a kick in the ass on her way out.

Forget about all the people over the last 6 years who have gone through tough times spiritually and for whatever reason thought switching churches would solve their problem. They would bring 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 FAMILY, at least they are supposed to be--asked them why they were thinking about changing, what was troubling them, how they could be of help to them, and how to pray both WITH and FOR them. Nobody, until DH and I anyway, has been given the total smart ass treatment and shown the door without so much as a word, all because of a passing thought written down in my journal; had I read my post aloud in group, what would my home group leader and J and the others have done? Why

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 me. 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 all those people said 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. 0. 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 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, 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 21 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.

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 rotting away? That poses a much different challenge when someone is in surgery every couple months.

The pastor, in one class the church offers, teaches members that if someone 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 just having witnessed me having CPR following one of the two cardiac arrests that left me on a ventilator.

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 (stress my own).

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 and sick. 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 understood her point of view. Many people that were members when we joined, or came around the same time we did, have left. There is a serious problem and I hope it will not continue to be swept under a rug. A whole being, once full of hope, seems to be falling away, but sadly too many have drifted off into the wind and it seems an issue no one is willing to discuss.

DH and I continue our lives here, feeling we are basically told we are not welcome.

It's 6:47 a.m., I've been up all night, unable to sleep. Time to at least let the body rest even if my mind cannot.

-5 Wind Chill/19 F, No Heat or H20, H20 Sold Out!

2011-02-03T14:20:00.009-07:00

Where's the Waterboy when you need him? The shelves are empty as the stores are sold out of water, and we have no water or heat at the house. There are "Civil Emergency" signs all over stores throughout town. It's crazy, and I'm freezing.

We live on the edge of Tucson, kind of between Tucson and a small blinking town along it. We are typically several degrees colder here than in town. We woke up to 19 degrees and a -5 wind chill. The pipes were frozen solid. Of course we wrapped blankets around the pipes outside and we checked them first thing this morning, only to find the blankets were frozen solid! Then the water company alerted the news our area is basically frozen solid and may stay this way for a long time. What could we do but bundle the kids up tight in layers under their snow jackets? They are about the only kids here with such jackets and on days like this boy are they glad!

Before long we realized the house was a might bit chilly. We normally have it at 68, still colder than we like but hey finances are tough. The thermostat showed it was 62, and we sighed, knowing this was not good. This area runs on gas for heat, stove and oven etc. We dialed Southwest Gas but the line stayed busy. A quick trip to their website informed us the hard freeze not only messed up water, but caused our area to have a gas leak.

After a couple hours, DH and I were cold, hungry, and now in desperate need of a functioning toilet. We tried several places that were closer to our area but all had signs up saying they were shut down either because of the gas leak, or because their water was frozen. Restaurants, supermarkets, I can't imagine the financial impact this is having. We drove further into town and eventually settled on a McDonald's based on the amount of cards in the parking lot. Yeah, you KNOW we were in serious need if went there (not really fast food people). Their bathrooms worked, we got a snack and a drink, and sat for a half hour but didn't warm up because their heat didn't work either, their workers were bundled up as heavily as us.

We bought a camping kettle at Ace on the way home so we could boil water on the grill outside and have hot chocolate. Thankfully we have a lot of camp gear. We set up the camping potty in the bathroom. It's been 10 hours since we got up and there's still no sign of water, no gas, no heat. Our kids have been on antibiotics for strep, and our daughter just started her second 10-day round of antibiotics because her strep never went away. I want to be sure to keep her warm as I don't think being cold will help her get better.

We thought about getting a small firepit and some firewood at Ace but they only had one pit left and it was really expensive. There were signs on the front doors of every place we went notifying of the "civil emergency," and told whatever they were out of. We really needed to buy some water, but there was none to be found. Thankfully we finally tracked down found some of the little 16.9 oz ones and bought those as there was no other choice.

The kids are home from school now. We always meet them outside and the first thing they said was, "Something bad happened at school today! The pipes broke and we had no heat or water!" They thought it was just the school that left them freezing all day. Their mouths dropped when we said once inside the house they couldn't kick off their shoes and layers and get comfy, because it's just as cold in the house as at school! Sorry munchkins!

Our plan for tonight? All of the rooms are closed off, and all of us will bundle up together in one room to conserve body heat. We will entertain ourselves with tv or videos. Tonight will be interesting, with 4 people and 3 dogs piled up in one bed!

Schools are shutting down tomorrow because there's no water or heat so it's unsanitary and a health concern for some of the kids. I'll update when we can.

Challenger 25 years

2011-01-28T16:52:00.007-07:00

It's been 25 years since Challenger fell from the sky, pieces shooting in every direction. As a little girl standing in my back yard watching, I didn't understand what was happening. Things looked different than all the other launches, and I was used to watching shuttle and rocket launches from my yard every couple months all my life. The Space Program was a way of life in my home town, so much so you don't quite realize all the schools and streets are named after planets, astronauts, and various NASA-related programs, equipment and missions; even the area code is intentionally 321 in honor of our unique practice of countdowns to launch.

It was because of the Teacher in Space Program's winning educator, Christa McAuliffe, that I became a teacher. My daughter is also named after her. Christa's mother, Grace, and I wrote letters from time to time over the years; her support of my career in education, and that we named our DD after Christa, proved therapeutic. Nearly two decades of being plagued by nightmares from being an eyewitness, but also from the terrible findings from the Rogers Commission, they finally came to an end.

Today, as I do every January 28th, I pray for the families of the Challenger 7. I also pray for the others who like me were there to see it, the FL and TX NASA employees who trained the crew, the students and staff in NH so excited to see their teacher and friend teach lessons from space while looking down at this beautiful planet, and for all who share in the sadness of such a loss.

These were taken from my backyard. One is immediately before the accident, and one is just after. Normally when watching launches from our backyard, the shuttle would make a sudden turn to the right after crossing above our utility wire. Challenger didn't get that chance. She never made it. She barely reached it and suddenly debris was everywhere instead of continuing to climb.

In memory of Ellison Onizuka, S. Christa McAuliffe, Greg Jarvis, Judy Resnik, Mike Smith, Dick Scobee, and Ron McNair.

January 8, 2011 Tucson, My Home

2011-01-10T03:23:00.013-07:00

*My husband and Gabby Giffords a few weeks ago*

It's 3:30 a.m. and I am so restless I am wringing my hands, making fists, letting out the tears I've fought so hard to hold back, until my family fell asleep. While I have kept my whereabouts to myself in the past, many may have figured it out while reading where I had my first couple of brain surgeries, a couple hours from here in Phoenix. So yes, you are right if you figured out I am in Tucson.

It's no surprise then that my emotions right now are a mess from what my community has just gone through. At one of the local supermarkets, a Congresswoman my husband and I have both spoken with on many occasions, my spouse quite recently, Gabrielle Giffords, was shot in the head. Six people are dead, including a 9 year old girl, and at least a dozen others were shot. Christina-Taylor Green, the little girl, is the age of my own two children. Giffords did not give speeches when she did these meetings. She just came to chat with her fellow residents; it was for that reason I have emailed her office over the years to discuss my frustrations and experiences being young, losing my career and so much more after being diagnosed with a neurological disease. I also wrote of the challenges of fighting for Social Security Disability and Medicare after so many failed brain surgeries, and the difficulties I've had a hard time finding doctors willing to care for me because of the rarity of my disorders. She has always been a good sounding board.

Tucson born and raised, Gabby Giffords is classic Tucson. She could be seen riding her horse, or sometimes her motorcycle. A Glock owner like myself, she is an advocate of gun safety and rights. Giffords shows what Tucson has been to me--I had a hard time adjusting to AZ at first, coming from FL--but Tucson, by population certainly a big city, but its residents have somehow found a way to keep its small town feel alive. It's perfectly normal here to have my 9 and 8 year old children in the car, and in the same brief stretch we take to my daughter's karate class it is perfectly normal to see someone riding a horse, another a motorcycle, a big group out for a bicycle ride, and on the way back we spy a coyote or javalina crossing the road. Wherever I go, I see someone I know--whether I like it or not! It took quite some time for me to just say the heck with it and not worry about what I am wearing because of always seeing a neighbor, a child's teacher, or one of my doctors or nurses. I have a service dog, and many store employees around here even know her name, some even keeping treats around for our visits. Things are pretty slow-paced here, no concrete jungle Interstate criss-crossing through, just streets which force a slow journey through town, the same today as it has been for decades.

A few years ago, one of my surgeries went very wrong, and while in the recovery room I had two cardiac arrests 12 hours apart. The second time, I didn't respond as well to CPR and I ended up on a ventilator. After 3 weeks in Neuro ICU and after getting off the vent, I was cleared to begin physical therapy at bedside only. The first time I sat up that's all I did. With their help I soon stood next to the bed holding the walker for support, not for long but it felt like eternity all the same. I was sobbing when it was over, exhausted. Eventually I was moved to the rehab part of the hospital, where I underwent several hours of therapy a day. While the physical pain was tremendous, I found that neuro-cognitive therapy proved much worse than physical. Standing, walking, getting in and out of bed, writing, using the toilet (hey it's harder than you realize), absolutely everything felt like I was a baby just starting out in life. I couldn't get things out like I wanted. The words were wrong when I spoke, so I tried to write it. I saw my hand moving on the paper, making letter after letter, writing nonsense, powerless to change it. I knew what I needed to say and to write but by body and brain couldn't care less. I cried myself to sleep every night in my hospital room, missing my husband and two small children who were a couple hours away; the loneliness, frustration and pain was unbearable.

All the doctors kept reminding me that for each day I was on the ventilator, it would take me at least a month of intense rehab for the body to truly recover. The brain could take longer. People simply do not understand this if they do not experience it themselves, and I frequently encounter the misconception from people expecting me to be fine, not realizing that while brain surgery patients take many many months in rehab just to learn to live again, we also are nearly always left with deficits; in therapy we also work on learning ways to adjust for those deficits, and how to adjust for them, because they become our new "normal."

I have my journal from the extended time in the hospital from this surgery as well as all the other surgeries I've had, numbering 21 at this point. During this most difficult recovery, at first it seemed everything I did was a jumbled up mess. My body was mixed up, my limbs not coordinating with one another, my speech and writing conflicted and confused. Change did take place eventually, slowly, one step at a time time. I don't know when I stopped crying every night but eventually that first night came...and then came a second...strength does return, physically and emotionally.

Those of us here in Tucson, we have suffered a terrible setback, one that has knocked us down physically and into our very being. But change, it takes place over time, slowly. We do not know exactly when we will be strong again, but it does happen, and it leaves us stronger inside than we ever were before.

Solar Power...and...Time Marches On...

2010-10-19T15:35:00.009-07:00

and pretty soon you realize it's marching right over your face (thanks, Steel Magnolias). My dark brown hair is beginning to sprout little white hairs, but oddly enough only where I've had halo screws. It seems trauma spots can develop? Who knows. I'm not concerned. "Oh, those are just the stripes where I've been screwed..."

My other half just finished up therapy on his hand. It still hurts him a lot, not surprising since he has a huge lump on the back of it. He also has some shoulder pain. Hopefully with time it will improve. Since Physical Therapy just ended and the doctor agreed, the lawyer can go after the driver who was cited. SHE runs HIM down, admits fault, gets cited, and WE have stacks of bills for ambulance, x-rays, therapy, surgeon and dr appointments, you name it. We owe thousands in medical bills. To keep from being sent to collections for the bills, we had to put it all on our emergency credit card and max the damn thing out. With that full, how is an already struggling family supposed to make ends meet, do things like feed growing children? Keep warm when it's 27 out?

My kidney is feeling better, well better than after last month's surgery anyway. I still am getting these intense ripping pains toward the middle. I don't know what that's about; it developed not too long before the kidney stones/infection/shutting down business. I was thinking earlier about how the surgeon at the hospital on the morning of my discharge said to see my bladder surgeon again, that my bladder may need more work because he suspects it's causing the ureter to be in such a position it may end up literally tearing off the kidney due to the Ehlers-Danlos. The trouble urinating has returned, the part where I frequently feel I must rush to the restroom but only go a few drops, and still end up having those awful contractions at the end, to no avail.

I don't remember if I have posted about the issues we've had with some of our older appliances that came with this house when we bought it almost two years ago as a foreclosure. We knew there were only a couple years left in them but at the same time, we were hoping this legal battle with the law enforcement agency would get worked out, in our minds giving them the benefit of the doubt that they would do the right thing. (Of course they didn't do that, despite giving them the chance to make things right; there was no choice but to continue on and allow the attorney to serve them papers.) Taking them to court extends things, including our plans of buying a new a/c, water heater, etc.

Anyway, our water heater has gone downhill much more quickly than we expected. While anywhere in the entire western half of the house, we can hear the water heater in the garage sounding exactly like it's popping popcorn. It's definitely on its way out. We have a lot of appliance issues and considering we have been in this house for 1 year and 10 months, we have spent a TON of money on servicing co-pays which has still only puts a band-aid on the problems the appliances have.

This morning we had a home consultation with GreenMonsterUSA. I'd already completed in-depth research on this company and others like them; indeed there are similar others but no one seemed to compare. GreenMonsterUSA serves to help homeowners go green, aka energy-efficient, and make it so cost-efficient we can save between 25 to 80%.

We were just hoping for a good deal for a replacement water heater, since ours is going to die at any moment. GreenMonsterUSA explained about the rebates that are currently available through our local and state utility companies, and also through the federal government. However, they are going to expire at the end of the year. All of these rebates add up to an amazing amount of money. Since it takes some time for the rebates to come in, GreenMonsterUSA (who is owned and operated by a man and wife in Phoenix, the gentleman is a well-known home-builder and passes his contractor savings along to GM customers) will float any balance for 12 months S.A.C. to allow plenty of time for the rebates to come in from all of those utility companies, and from the state and federal governments as well.

The amount of rebates available to us was tremendous. We are getting a new water heater, but it's solar with a back-up; this will save us around 90% of the energy used for hot water. We'd only dreamed of getting a solar water heater! They also are installing a KVAR capacitor, which in a nutshell equalizes energy use of all motors in the home, saving up to an additional 25% on each power bill. Lastly, they will AeroSeal our ductwork, which is basically a unique type of sealant developed out of the need to address how 90% of used AND new homes have leaky ducts! Once the ducts are sealed, air is not only cleaner but flow is increased and energy consumption is reduced 40-50%.

We are getting all of this for less than we expected to pay to replace one of the appliances. Tomorrow the solar panels for the water heater go on the roof, and the water heater and the back-up tank go in the garage where the dying popcorn-popping-imitation machine currently stands. The KVAR will likely go in as well. AeroSeal takes a few days longer because they are booked a little further out, but no later than two weeks max. They provided us with a folder of how everything will proceed regarding the rebates, all rebate forms are included from city, state, and federal, there are timelines and contact numbers, explanations and guarantees of each item and/or process, etc.

Within only a few years they have been able to open in multiple states, and even though they grow through pretty much word of mouth and media features from the difference being made (their main purposes are to not only to go green and help our planet, but to focus on the USA and end reliance on other countries for their energy resources). Part of how they spread the word is because of how happy their customers have been; GreenMonsterUSA does the 12 month SAC etc, and relies on the customers to let others know about the great deals. And so I am sharing with others here, especially those in Phx as well as in my town. There are thousands of dollars in rebates from the city, state, and federal government to make 'green' improvements to the home, and rebates from utility companies. BUT The rebates were to end December 31 2010. Though those rebates may now be gone, they can still tell you if others are still available, or if there are any new ones. Saving money of course is awesome, but taking care of our planet is a responsibility, something to constantly model for our children. There is a 30% energy saving guarantee with the GreenMonster programs! If you have an HOA, it is federally mandated now that they can't stop you from getting solar; the company has info on this if you need it as a reference. Oh and an added plus--with the company owners having been well-known builders long before they started this business, they are offering customers guaranteed best prices on all home improvement items for 5 years after becoming customers, whether for something major like an air conditioners, or something smaller like a toilet.

Being 'green' is important to me, which most people know. I am hopeful people will consider GreenMonsterUSA, even if they think they can't afford it (because goodness knows we can't afford a darn thing at the moment), because the rebate combinations are awesome. I agreed to put a sign in my yard for awhile.

If anyone wants to know any more about them, please let me know.

Hubby run over & surgery 21

2010-09-09T23:59:00.008-07:00

There are people who are waiting to hear from me via email and I apologize. It's been a heck of a week. A week ago today my husband was riding his bicycle the usual 16 mile trek to work and was hit by a car. Long story short, the female driver with two small kids in the admitted she was in the wrong, causing him to t-bone and damage her '09 Camry Hybrid, which his Garmin bike computer recorded he hit her while riding 24 miles per hour. As he hit the ground his head was about to go under the still-moving vehicle so he used his arm to push his head up and out of the way, thus she ran over his hand and not his head.
The next evening, I began having some pretty intense stomach pain. I was angry and stressed about this woman running down my husband, and initially attributed it to worrying. By morning though I knew it was something else, the previous 8 hours of vomiting, shaking, and right-side abdominal and lower back pain being major clues. I woke up my other half and my throaty dehydrated voice said we had to go to the hospital, scaring spouse out of bed and into gear since I rarely say those words.

I was taken back immediately, with low body temperature, vomiting, and a case of the shakes. Since I'm allergic to IV contrast they gave me two cups of it in oral form so a CT could be done. That didn't work either since I vomited after every two sips and they made me start over, EVERY time. After more than 8 hours a CT was done without contrast, though the nurses argued nothing would show up.

The CT showed three kidney stones. The largest at 3.3mm, it was seemingly stuck in the entrance of my right kidney. Two smaller stones were close behind. I was admitted to the hospital and for the next 4 days I was so heavily flooded with IV's the RN's kept a huge supply of saline bags in my room so they would always be prepared for how quickly they were having me go through them. It was nuts.

And long story short for me this time, on the afternoon of hospital stay day 4, I was taken into surgery (#21 for those counting). Interestingly enough the 3 kidney stones were gone so even though the RNs were straining my urine all 4 days, somehow we missed them, even me, and I was still having the weird involuntary contractions when I went (I did notice a couple nurses skip the straining, so who knows). However, the surgery was not a waste because they found my kidney was shutting down; the biggest stone had been stuck in the entry for so long the kidney became infected & enlarged, and although the stone was gone, the entryway was so nasty it was responsible for closing it off. They used a scope to search all around inside my kidney, and put in a stent through the opening so nasty stuff could come and go from the kidney and get it working today.

It has sure made me stop taking advantage of how much work these two little organs do, that's for sure. It amazes me that this little organ is responsible for so much...and can be this incredibly painful. I know the surgeon stuck something inside my kidney and dug around looking for stuff, but good grief this is ridiculous. It feels like someone stomped on my kidney and then used it as a soccer ball.

It's taken ages to write all this because I keep falling asleep. I have waves of gratitude for those moments of peace, in between the times of pain when it seems it will never end. I keep reminding myself though it can always be worse. There are always people out there that are worse off. Hubby could have been injured terribly when hit by that car, and my kidney closing off could have happened long ago, when it would have been too far gone to save it from irreparable damage. I hope it will kick back into gear.

So yes it's been another wild and crazy ride around here for the last week, but we will come through it stronger as always.

Birthdays and Biopsies

2010-08-13T11:31:00.004-07:00

ETA: **HEATHER** Please email me again! I was going to respond to your question re: PFD/brain surgery statistic you asked about but I can't find your email. I really want to talk to you about this. daswunderkind (@) (cox) dot (net).

My baby girl turned 8 last week. My baby girl, who is famous at the hospital for A) biting a nurse while still in the womb, and B) being their first cord prolapse in 5 years; not only that but from time of prolapse in my hospital room to the time of getting me to the OR and getting her out, took a whopping 4 minutes start to finish. Earlier this year we ran into my OB, who gave me a huge hug, and immediately said, "Your daughter gave me these gray hairs!" There is no doubt in my mind Meg's spit & vinegar personality is why she is with us today, with two 150% healed lungs (if you've met her, I know you're laughing), beautiful, incredibly bright, and a heart of gold. Happy birthday squirrel!

A week ago today I had my well-woman appointment. No results from that, but the unexpected part was he didn't like a little thing with my right breast. It was a change that happened nearly a year ago so I thought nothing of it, but he did. So today, seven days later, he had me seen at a breast surgeon's office.

I got home about 15 minutes ago from the surgeon's consult. Maybe I was in denial, maybe I was naive, but over the last week I really thought the appointment was just going to be a "Oh it's just (whatever), it's nothing. Nice meeting you."

Instead, I'm sitting here with my breast sutured following a punch biopsy, now covered up in gauze and paper tape. Some just need glued closed, but thank you very much Ehlers-Danlos, I had to be a bleeder, thus needing sutured, gauzed, blah blah blah.

10 Year Anniversary

2010-07-17T03:25:00.002-07:00

Happy Anniversary!
We celebrated our 10th anniversary this week. More than anything else, the thought that keeps entering my mind, and DH has been thinking it as well, "We did it...I made it." It may seem a strange thing to focus on, but most couples have not experienced the trials and tribulations that we have, not packed into ten years already. Here are some of them, and why we know better than to question, "Why us?"

But baby, we made it! We did it, and I am so glad we stuck together through thick and thin! So many have asked me the question, "Don't you ever ask God why you got this so young, why so much was taken away from you, your career, you can't do much with the kids, don't you get mad at God and ask why?" and I tell them, "No. I ask, 'Why NOT me?' If someone HAD to get sick, and it had to be either me or Jane Doe next door, and Jane has NO faith in God, no God to pray to or trust in, and no friends to celebrate with when things go well, and no friends to hold her hand or hug her and cry with during the scary times, then by all means, let ME be the one to get sick! I have faith that God will see me through. I will either be healed, whether it means God will take this awfulness out of my body and make me whole again, or if it means he has to take my soul into his arms in order to free my body from this disease, then both ways I know God has taken care of me, and that God has been with me the whole time, has never abandoned me, has always been there! So, why NOT me?

Many of these stories tell of trials, but they have made our marriage strong, stronger than most people's are by their 10 year, I believe. Trial by fire, that is for sure, and we have come out strong and unified...here is why:

My husband has walked beside my hospital gurney 20 times, watched me disappear into the OR, had the doors in his face, 20 times. He has put my life in the hands of near-complete strangers in Flagstaff, Phoenix, Tucson, New York, and Baltimore.

Standing outside a Recovery Room once, he heard a hospital intercom system calling a Code Blue, which he knew to mean that somewhere, someone's heart had stopped. However, this time, 40 or so people ran by him to the curtain area where he had just been. Stepping closer with my mother, who asked, "What does Code Blue mean?" my husband had to explain, "Her heart stopped," and then they watched a man jump up onto the gurney, straddle his legs over both sides of my body, and start chest compressions as the few dozen other people did the assignments that goes along with being on a Code Team. How many husbands out there watch their wives Code? He should never have had to see that, but at least I responded well to CPR and all the drugs they pumped in.

The next morning he was shocked to find me on a ventilator. He yelled at the nurse's station when he bolted out there, why did no one notify him something else happened during the night, his cell & hotel numbers were posted above my bed. I died again, but had not responded well to CPR this time, thus the vent. I won't share now the look on his face when I came to, or weeks in-patient, months in rehab relearning walking, writing, pretty much everything. But we made it through.

Following one of the brain surgeries, a sneezing fit tore my brain graft resulting in a brain bleed. When the ER dr came and said I was also positive for meningitis, two EMTs were with her. They took me on a 2 1/2 hour ambulance ride to Phoenix to a hospital with a more specialized ICU. The meningitis caused arachnoiditis, which basically means I grow scar tissue in my brain 24/7, it never stops, and it's incurable. It tangles up the brain, the nerves, blocks the flow of oxygen and blood supply; it goes throughout the body as well, making organs glue themselves together (thus my hysterectomy last year, and why they found my uterus was wrapped 2/3rds of the way around my bladder, no wonder why my bladder surgery only partially worked). Arachnoiditis is progressive, painful, and typically debilitating.

DH had a rough time with some things as well, medically, for his knees and for a hernia. He sustained a major line of duty injury in a car accident: he was passing through an intersection and a woman blew her red light, t-boning him in the driver's side of his police car (which had to be totaled). He missed several months of work for shoulder and hip injuries. He had another line of duty one taking down a fleeing criminal, resulting in getting a repeat ACL/MCL, missing months of work, and more surgery a couple years later for hardware rejection.

Both of our children were in NICU babies, and DD's survival is God's work, no other explanation, when the mortality rate of the incident is so high. DS had a minor issue NICU was needed for but was not in danger but was scary as new parents nonetheless. DD had surgery for both eyes at 16 months; tonsillectomy/adenoidectomy at 3 that resulted in 4 days in PICU for infection and not maintaining oxygen. DS inherited my form of Ehlers-Danlos, so his joints pop out frequently and cause problems. Both the kids have a 504 Plan, a federal accommodation plan that provides guidelines to help the teachers work better with them, and also methods to help them better succeed. Every 504 is individually written for each child (see P.S. at bottom of post for more info on 504 Plans, if you want my info as a teacher and a parent).

We have lost close friends and family to cancer, accidents, and various illnesses. My own illness allows us to raise awareness through interviews on television, in magazines, and in newspapers.

I had to say good-bye to my love of teaching middle school. I guess in another way I substituted it with the awareness projects I started and still carry on to this day, such as this blog which is the 1 website about Chiari, http://www.cafepress.com/chiari (all profits have gone to ASAP since the day I opened the store 12/25/2004, and the bracelets I've been having custom made since then. They are purple silicone, like the yellow LiveStrong ones Lance Armstrong has for his cancer foundation, especially popular again right now because of the Tour de France. The profits for these go to Wishes and Rainbows.

I figure all these things happened to us for a reason. It's definitely for richer for poorer, in sickness and in health. Right now we are definitely in the for poorer part, and in the sicker part. We seem to be stuck in neutral, but we have just kept taking it from God, thinking that God's time is different than ours (ha, started typing "hours," and how darn ironic would that have been?) and sooner or later, he is going to pull us out of this and say,

"Well done, good and faithful servant! You have been faithful with a few things; I will put you in charge of many things. Come and share your master's happiness!" -Matthew 25:23 NIV

(There's been a couple other little things but I have been up ALL NIGHT and now it's 5:52 a.m., really honestly truly and I'm going to GO TO BED now and see how long I can rest there before the kids come get me, you know, in about...probably in 45 minutes lol.)
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P.S. For people needing info on 504 Plans for kids with special/extra needs: A 504 can be written up for kids who take a prescription for a physical or emotional problem, who has any diagnosis that may possibly put them at a disadvantage at any time during school, such as asthma, diabetes, anemia, and even things you may think your child has that may be beneficial that has been formally diagnosed, such as having superb hearing that is WAY better than normal; i.e. I once taught a 7th grader whose hearing was so phenomenal it literally caused him pain to write with a pencil or pen, because he could hearing the lead or ink scratching on paper. We set him up with a 504 b/c he had a physician's report & diagnosis, so I set up his 504 to provide him with an AlphaSmart --I've never taught at a school that didn't have these, or something similar--so he no longer had to suffer through the literal pain of physical writing--which also did impact his writing as all, so suddenly his grades did improve because he no longer was suffering with that pain.

Children with diabetes that need to go to the nurse's office to check their blood sugar after lunch, and therefore miss the first 3 minutes of the class she has after lunch, should have a 504. If there was ever a test that was unable to be made up due to district or state rules, etc., the 504 would provide her with that extra federal protection, provided that when the parent(s) and teacher(s) upon writing up the 504 Plan be sure to include in the accommodations section something along the lines of, "Due to necessary daily testing in the nurse's office, if student misses a portion of a test/assignment, she must be provided with an equal amount of time to finish such work, so as to have an equal amount of testing time as the peers in her class."

Anyone needing help with 504's can contact me. I have written many a 504 for many issues and would be glad to help. (ADD/ADHD/superb hearing/diabetes/Asperger's/Autism/Sensory Integration Disorder/Ehlers-Danlos/OCD/etcetc.

Tips for Married Couples Dealing w/Pain, hearing update

2010-07-01T12:14:00.004-07:00

If you are in a long-term relationship and one of you is a chronic pain patient, this article might be of interest.

Thank you for those who have sent notes to see how the 2nd hearing went on Monday. I apologize for taking a couple days off. I have not only needed this time to deal with what happened, but all four of us are sick right now. Nothing major, but we all have head and upper chest congestion and a tremendous amount of body aches. Basically we're coughing hacking stooped over when we move and moaning while we do so, LOL. We can barely move. I'd love some good-ol' OJ right now for all of us but I don't think any of us are getting to a store any time soon.

So, the hearing. I don't even know where to start. In a nutshell, the person responsible for this mess was called to the stand and was caught in a multitude of very serious lies, which directly resulted in the job termination, and he admitted what he did.

CD's idiotic psych report was put to shame, her own issues discovered and the report basically tossed out.

Three and a half hours later, three committee of three voted to uphold the decision the person above made, yeah, the decision made by the guy who just was busted for a ton of lies, which were used to fire someone, take away his entire career, destroy our lives the last 22 months in ways described elsewhere at this blog.

No reason given. No logic. Simply, "uphold." No explanation. Personally I think they are chicken shit, afraid to be the ones to stand up straight, look DPS straight in the eye and tell them they are out of compliance with the ADA, which is a major federal violation. It is going to bite them in the ass.

Unfortunately the EEOC takes forever to perform investigations. We have an investigator, a case number, and can hardly wait for the day when DPS has their ass handed to them. I can't wait until we are able to get them for the civil rights suit (lack of ADA compliance, ADAAA compliance, defamation of character, pain and suffering, loss of wages, the list goes on...)

Our attorney will have the appeal done by the end of the week. Sheesh that's tomorrow already. When will this end? 22 months of a living, breathing nightmare, and no end in sight.

Hearing #2

2010-06-27T22:33:00.002-07:00

Our 2nd hearing is in the morning. This is in regards to DH's reaction to the hernia surgery meds situation. It happened September 2008 and he was supposed to return to work a couple of days later. They never let him. The full story can be found in another entry in my blog.

While we were in Virginia DH was going to work on finding to watch the kids for the day so I could be with him for the hearing, like I was in March. Unfortunately he didn't get anyone lined up. I don't want him driving there and back alone tomorrow, regardless of the verdict, so all four of us are going on the road trip, around 5 hours total. I'll sit in the lobby with the kids while he is in the hearing room with our attorney. I am pretty upset about the whole thing but what can I do?

If you read this before the morning of the June 28, please pray for us or send positive thoughts. Pray the committee will be fair, reasonable, and see the truth of the situation, not just what the department has been feeding them. Let their ears, eyes, and hearts be open.

Overhaul

2010-06-26T12:40:00.002-07:00

I am flattered and thankful that this blog remains the #1 ranked Chiari website on the Internet; not just of blogs, but of anything having to do with Chiari whatsoever. It has been a lot of work to keep writing and keep reliable, informative links for the public, in the midst of, oh, say, 20 surgeries and additional hospital stays, the daily SeizureMonster, raising two small kids, DH's legal battle for the last 21 months. (And did I mention the daily BS that is life with Ehlers-Danlos and the rest?)

My point being, I only have so many spoons a day (don't get it? find the link about spoons). I am a bit behind on updating my links, especially the ones from the medical journals. I do enjoy reading medical journals. I know for most patients they may as well be a foreign language, but my first few years of college were in a medical field, and those years were paid for by my full-time health-care position in a hospital. Yes, it was a lifetime ago it seems, and I did end up changing majors to work with children, but the body has always made sense to me so the journals are an easy read. (To quote Willy Wonka, "Strike that, reverse it." The body HUMAN makes sense to me, not my own body. My own body is an exception. I don't know WTH it has in for me or why.)

That said, right now I am fixing broken links--it happens. That is today's job. Over the next couple of days I will read the medical journals from the point at which I last stopped, and as always, will post any new findings in the world of Chiari Malformation (CM), Syringomyelia (SM), Ehlers-Danlos Syndrome (EDS), Tethered Cord (TC), Postural Orthostatic Tachycardia Syndrome (POTS), and Thoracic Outlet Syndrome (TOS). (Regular readers of the sidebars know when I update links I mark the new ones with an asterisk, and the ones previously marked as new become of normal status.)

Thank you to my medical readers for making this site what it is. Doctors still send patients my way to speak with, school districts from around the country request help to learn about these disorders to help their SpecEd/504/IEP teams, which as a teacher thrills me. Hundreds of hats have gone out to patients in need of them for their recovery from brain surgery; my volunteers from Crochetville and Ravelry are awesome. National and local tv networks, newspapers, and magazines have contacted me for information, done stories, profiles, interviews, etc. Anyone can do this. The more info we get out there, the better.

Patients, I provide these links for you to arm yourselves with knowledge. My email is provided if you need help or a neuro referral, or have questions. The blog, well that's just my journal b/c I can't physically write one. Patients understand that; we all need a place to scream, when we can't physically do it or our already-enlarged brain might just leak out our nose or ears...just kidding...sort of.

So stick with me while I overhaul & update the links, fellow brainiacs, and keep your fingers crossed that the 3 or so researchers we have out there are getting us closer to a cure. Ok I'm rambling, hurting, need meds before I get back to work. Sigh. As much as I may try to live in denial, this crap is still in full control of my life.

Zach, Cerebral, and Oprah

2010-06-24T11:13:00.006-07:00

I can't say things any better than Zach. He is competing to have a travel show of his own on Oprah's new tv network that begins in January 2011. See for yourself: his comedy is a riot, incorporating physical comedy into his act, but he has a terrific purpose and intent for his show. Please go take a look.

http://myown.oprah.com/audition/index.html?request=video_details&response_id=5615&promo_id=1

Back again? Like it? Please register and vote for Zach. I registered and it was a quick process.

Flying cross-country

2010-06-15T15:30:00.002-07:00

Tomorrow morning the kids and I are flying across the country to spend a week with my bio-dad, step-mom, and 13 year old sister. DH will drop us off at the airport at 5:30 a.m. and I believe he heads to work not long after that. I wish he could come with. It is going to be really strange to back there without him. I know, I've gone to NYC so many times without him, but that was me, alone, no kids. This time, I am responsible for two little kids this whole time, for a REALLY long day of travel, regardless of seizures, pain, layovers, the awful pain flying does to my ICP. We're going to have a talk before bed about handling the seizures on the planes and in the airports, because though they are used to being around them every day, it's a different story when I am the only adult around and God only knows what kind of people could be around. I fear everything from the thought of someone taking advantage of the situation with our belongings, to someone thinking they need to call 911 or something. I don't want to come around surrounded by meds workers and feel badly for wasting their time, as these things are just life as normal around here. But anyway, if DH doesn't work, he doesn't get paid, and we need every dime of his paycheck and my SSDI (Security Disability Income) to make the mortgage payment and utilities. So it stinkstankstunk but my family understood, thus they bought the three of us tickets to come out.

I am partially packed, as in, STUFF is on the kitchen counter and more is on my hope chest in the bedroom. I am only bringing enough clothes to last us 3 days, then I'll do a load of laundry and we'll wear it again and come home in it again too. We aren't paying to check bags. The kids are each going to wear a backpack with their clothes and their Didj, and I'll have my Duffel and the family toiletries, meds, etc. I don't know as of yet if I will bring a crochet project. If yes, it definitely won't bring anything that takes concentration, because I suspect at 13 my sister won't be allowing me enough alone time to get something done like that LOL. But I am hoping I can at least bring some cotton so I can get some dishcloths or water bottle holders done. I can do that with little materials and even lesser brain power, which is great with my swiss cheese brain. I really want to be able to DO something during our layovers, or in bed at night if I can't sleep from pain etc.

Sigh. I should be folding the load of laundry waiting for me on the couch. When done with that then I can finish packing with the exception of meds/toiletries.

Off I go. Praying things will go smoothly flying-wise. Flying with Chiari sucks. Even worse when some ribs are in the wrong place again, making it hard to move, and doing good things like breathing. Changing planes ought to be a funfest! But I do look forward to hanging out with Kate and I am grateful for this time together so I'll shut up now.

Wheeling & Walking worlds join together

2010-05-28T20:34:00.002-07:00

This is fantastic: couples consisting of a wheelchair user and their able-bodied partner compete in a dance competition. There's the rumba, samba, waltz, sport, you name it. I'll just say that there is a reason the chairs must have anti-tippers on the back (such as at segments 1:15 and 4:12, among others!). There are serious moves out there. Love it!

Community

2010-05-26T11:13:00.009-07:00

What does a "community" consist of? Is it a group of people that meets in a building? Is it a subdivision filled with homes? What of those within those houses? How about those that are home-bound, so they make a community of their own by reaching out and creating an online "community," a web group of people with the same disease? It is hard to feel I am the only person who is trapped at home who exists every day just to have a couple dozen seizures, munch on something, pet my pups, and make sure my couch/blankets/heating pads don't move. If I can, I blog in this, my journal, which serves to distract myself from the pain of the day, so I can keep myself away from all the bottles of narcotics just a little bit longer until I'm due for my next dose. It's not like I have any other way to spend my time!

However, apparently by not being in physical attendance, I have chosen to "walk away" from the church community. I think it is incredibly unfair to say I was only a part of it when I was physically there, giving of myself. I guess every time I was in the hospital for the 20 surgeries and other random issues, I wasn't part of it either. I guess I have a lot of nerve getting sick! My husband went on Sundays alone for over a year, until his work schedule no longer allows; when he went and was asked about me and what could be done to help, he said just visit, call or email, please! Dozens agreed to do so, but guess how many did so? You got it. When he came home each time and told me who would be calling me or messaging me, I could hardly wait. Hours, days, weeks passed. Those who stare at the ceiling all day know how very long, how when we go to bed each night not having spoken to a soul, years have gone by, the heart broken a little more each sunset, but holding onto hope that when the sun comes up again someone will follow through on their word.

Is it any wonder that 1/3 of those stuck at home suffer from suicidal ideation, and those with chronic disease are 20 times more likely to commit suicide?

I care for the people in attendance, but there is a tremendous amount of hurt by the ones who have been in a leadership position over the years, rather like a clique of sorts. It was a leader who told me she knows she is wrong to not keep in contact with me but it's easier for her because she doesn't like to see what this disease does to me, so she chooses to ignore me, knowing it's wrong. It was a leader who after having us in their group for two months and meeting in our home weekly, said they were bending over backward for us--not sure having a rotation in our home is bending over backward, but that statement was horrendously painful. After joining an online community full of these leaders, at their urging so they could keep up with my situation--though they wouldn't discuss any of it when I tried to talk about it there--both of us would bring up situations and one of the main leaders chastised us for expecting us for him to keep up because he knows SO many people online and things to do at the online group. The first thing that came to mind was how when I said that to him a few years back, he told me I needed to shut off the computer b/c it's taking time away from God if there's that much on there I'm paying attention to. Maybe that goes both ways if if members of the online community can't be heard. (I did leave the online group after a couple months, because when I tried to discuss heavy stuff, it was ignored. What's the point of being there if the few people that asked me to come there don't even acknowledge I'm alive? No one there noticed I left anyway, and I am not surprised.)

So, are the home-bound no longer members of the community because they can't physically participate?

I think the hardest part of all this is the sudden realization that I was not actually part of the community in the first place. I was never part of the "in" crowd. The groups have been the same since I started 6 years ago. I am tired of always trying to keep everyone happy. No time for it. I am at peace with myself. I am not the one who initiated and sent out some really hateful stuff to people in February, which we left alone as long as we could but after growing increasingly confused and concerned about the odd conflicting information sent to two different people, had to check in and find out what the truth really was because it made a huge difference in our family. That is for that person to deal with and only she knows if she can live with what she responded with or not. That's between her and God, not me.

As for that topic, I'm done. It's not worth my health. There is a fantastic quote from the movie The Doctor:

June: My disease, I see it giving me certain freedoms I never allowed myself.
Jack: Yeah, like being incredibly hostile?
June: Like being honest and expecting people around me to do the same.

As for what impacts my daily life, how I live sleep and breathe, I still have these seizures every single day. NY should receive my imaging from CT scan #54 within a week, then a week or so for some answers as to what specifically I did. Those of us that have seen it have all the same areas of concern, bends in the rods, vertebrae that appear fractured, on top of already knowing they've all spit off a bunch of bone spurs and are all herniated. (I can't help but not understand how people can bother going to PT for one or two herniated discs. All of mine are. Every. Single. One. And I'm going about my life. But I've known so many people in the "normal" world who go running to the dr wanting help and therapy for one or two bulging discs. Good Lord I'd climb Mt. Everest if I that was me!) My scapula feels better than at first at least, and I'm grateful for that.

Pain prevents me from doing a lot of stuff so it's a constant battle to get things done, right down to taking a shower. How am I supposed to be a member of any community when I can't even take a shower more than once every week and a half? It's humiliating.

I have to go use up 1/2 of today's spoons putting wet clothes in the dryer, and the other 1/2 cleaning up what my Border Terrier is vomiting up right now.

Low

2010-05-19T13:41:00.003-07:00

I have been waiting and waiting to hear from my home group from church as to when Alpha class ends so I can learn when regular home group will start meeting again, and at which house. I figure surely Alpha is over by now. Not once has anyone from group contacted me to see what's been going on, how we're doing, nothing. If any of them read my blog, may they think I left so they are done speaking with me. But that is no reason to give up a friendship. The bigger question I have is has it not occurred to anyone that could I just have been having a really horrid day, my pain levels been through the roof, been up for a few days straight, or had a couple dozen seizures already that day by the time I started writing.

Any of those are a strong possibility, but not getting a phone call, an email, a text message, a post card, nothing, for the last few months makes me feel lower than I have ever felt in my entire adult life, hands down. Never has a group made me feel so insignificant and unworthy.