Responsibility in end-life times, domestic violence, forgiveness

Funny how that happens, isn't it, that the world continues on, even if you don't really want to be part of it. I think there is a time during every single day when I wish I'd already taken care of official paperwork (Living Will, Medical Power of Attorney) before the surgeries I had that went haywire. Had I been responsible, had I had things in place, had a DNR been in order, all the garbage, all the struggling, all the progression since then would never have happened. But I can't live life with regrets. What's done is done, and what I have learned is to have NO REGRETS, to LEARN, to say what needs saying, and to always, ALWAYS be ready be you NEVER know when that breath will be your last so you had better be damn sure you are content. Life, and Death, does not care about your age. It does not care if you are a 63 year old world-famous man like Robin Williams, or a 28 year old woman with a 4 year old and 3 year old. I have let go of the mistake I made in not having paperwork ready; it was a mistake not because I was having repeated brain surgeries with complicated factors. It was a mistake because I was a parent and my choices should have been documented legally and not left to a spouse already overwhelmed from being told I wouldn't make it through the night.

Make no mistake: the world go on. Don't leave heart-breaking decisions to loved ones who are already trying to cope with loss. Be responsible, and set up a living will and/or medical power of attorney. It doesn't even have to be some huge complicated document. Check with a local legal aid center for a free one that is legal in your state. If you want more issues covered specifically than are on the provided form, use the free one as a starting point and type up your own. These issues could be regarding organ donation, IV fluids for hydration, pain relief methods, how long to remain on a ventilator, who you appoint your medical power of attorney, etc. Do not initial or sign anything until you take a non-relative witness with you to have the form notarized (you will have to sign it in front of the notary). Give a copy of it to the witness, and another copy to someone else as well, for back-up. Your medical power of attorney needs to be someone who will fight to have your wishes on your will followed. *You must take a copy of your living will with you to the hospital any time you ever have a procedure or surgery so they can have it on file.*

Moving right along, I know it has been a long time since I have been here. I will be on here more. It'll be a little complicated but I think it will work. I've not written because my hands just can't type like before. I'd love to get Dragon so I can talk-to-text my blog, but no funds for that. What I am going to try after today is talk-to-text on my phone, and emailing it to myself, then copying and pasting it to here. I'll have to clean it up, which will take forever, but less time than the few hours this is taking. I am going to update all the educational/medical journal articles on the side of the page for Ehlers-Danlos, Chiari, Syringomyelia, Postural Orthostatic Tachycardia aka POTS, etc, but that will take me all week most likely as I need to sit and read the journals to look for reliable, quality leads. 

As for how things have been around here, there's always medical junk. I had my 29th surgery almost 4 months ago and finally feel like I am starting to really turn the corner. My left shoulder was done this time, and I foolishly believed it would go better than when I had my right one done. Stupid, naive thought! It was horrendously more difficult, had complications, and I'm still in physical therapy. It's been an immeasurably worse experience, but it's not like I had a choice because it got to the point that I couldn't life my arm any higher than about elbow-high. But anyway it's finally getting a lot better. We're swamped with medical bills, collections threats, utilities threats, all because of the surgery, but there's little we can do. We're sending them partial payment every few weeks and letting them know frequently that every payment is on the way, and when the next is coming and how much, but we still get the threats. It's absurd. It's not like we're ignoring them, which is what a good portion of the population in this region does. I'm on Medicare, which pays 80%, and we're responsible for the other 20% since I can't get a secondary plan aka Medicare Advantage. I went on Medicare at 27, so I went on Social Security Disability aka SSDI though I'm under age 65. There are only 3 secondary plans in my county for people on SSDI that are under 65; all 3 automatically disqualified me because I've had brain surgery. And so, I am always responsible for 20% of everything: doctor appointments, labs, testing (including 120 MRIs/CTs), surgeries (brain surgeries have been 350K for the drs, 150K for the hospital). We have reached the limit on our two credit cards. Before I got sick, we never used them, just had them put away for emergencies. Our two kids' college funds are gone. Their SSDI benefit (because of me) is used for the mortgage. The do not have insurance, though they both take medication. Meg's issue is maintained well with a prescription but Collin has Ehlers-Danlos like I do. They had Medicaid through the state for a couple years, until January when Arizona got rid of the Medicaid program for kids. They told me, "There's ObamaCare now, just sign up for that." We tried that, but it was going to be $500 a month (Medicaid was $60) but even if we had that money (yeah right) they wouldn't cover any services until we paid a $15,000 deductible first. That's my whole year of Social Security! Not gonna happen.

Enough on that. The kids are growing like weeds. They are off wreaking havoc to their 7th grade teaching team right now. They are together in the same 7th grade team, most of the same same classes. Collin is a wee bit taller than me and skinny as a stick. Meg will probably be taller than me within a couple months, as she is almost there now. She is muscle-y like her dad and lots of feminine curves. My parents will be pretty shocked when they visit from Germany in a couple months. They are good kids. They handle things really well. There's been a lot of tough loss in a last few years. My grandparents who pretty much raised me, whose house I went to every day, my grandmother was killed three years ago (by a relative), and my grandpa died a year ago. The court case has been just absolute bull shit and nothing but stress. I don't think anything that ever happens with it is ever going to bring any healing. My cousin Melissa, on the same side, also died last year ago, not long after Grandpa. She divorced her husband of 20 years, right after her youngest graduated high school. She entered the dating scene again and the first guy ended up really possessive. She broke it off after a couple weeks but he wouldn't hear anything of it. He showed up at her house in the middle of the night but she wouldn't let him in, causing a loud ruckus and waking neighbors who called the police. By the time they got there though she'd been shot in the head and stomach, and he'd shot himself in the head but was still alive. They took him by ambulance to a helicopter but the doctor on board pronounced him dead so they never took off. I still haven't heard the results of the toxicology but my second cousins (her kids--E having just graduated high school 3 months prior; J got married the weekend before; S is in college) thought he was high on more than one occasion when he was at their house. I am not blind here, and realize there is a possibility Melissa could have been experimenting as well. Regardless, she didn't deserve for this guy to become obsessed with her and thought since he couldn't have her, no one could, so killed her execution-style. The only bit of comfort is her having passed instantly.

The whole thing with Melissa has been devastating. Things were left badly between us because of how she'd been treating someone in our family. I didn't reach out to her with forgiveness, as I should have because that would have been the right thing to do, the way I think God would want me live. Instead I held this grudge and the chance to make things right never came. I can't imagine what the man's family is going through. It's a small town where everyone knows each other. They've basically been living in hiding, not making even a single statement. These things with my grandma and Melissa, they are a horrendous reminder of how violence--whether random or domestic--has become so commonplace in our society. It's not something that happens to only "that" person and never "me." Of course I miss my grandpa, his loss still being pretty recent, but the way my grandmother was ripped away? It is so unfair to get to that age, only to have someone take it away in an instant. It's a loss that just does not quite heal the same as losing a loved one to age, having experienced a great many things in a long life. Though she has been gone longer, I still find myself blindsided at moments when I least expect it, shocked she is not here, that I can't call her to tell her something, and the pain is so overwhelming I just can't catch my breath. 

I've been writing this all day, typing around phone calls, Skype chats overseas, breaks between monsoon lightning storms and floods, and it's now 2145. I am done, for now anyway. Tomorrow I have PT am planning to post about splints and braces, with updated information. I'm going to sign off for now and get meds on board. 

Rest easy,

K

Huffington Post article reader? More information for you!

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

Huffington Post Article about Shelby and Her Person!

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

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

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

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




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

Kidneys, Ehlers-Danlos tearing apart, Forget regret, be at peace

I'm not sure why I bothered to re-post the "Church's and society's bastards" blog post like I did. All of one person from before made contact with me, and that is nice, but at the same time it's not any of the church officials (and it was technically an official who kicked us out). Amazing how some just go about their lives completely oblivious. Or maybe they choose to live this way? I don't know. I couldn't handle it. I need to not have any regrets, be at peace with myself, EVERY. SINGLE. DAY. I have to know Jesus will be there, waiting with an outstretched hand, if today is the day I finally fall into peaceful sleep. Most people my age don't think it happens to them, but I know better, my husband knows better. How many 20-something-year-old husbands have watched as their wives have had a group of people try to bring her back to life? I have to live with this body knowing it's failed me not once before, but twice, and had I not been in a hospital when it happened, I would not be here today. The question always nags in the back of my mind, wondering, what made the doctors not call time one second prior? What made them continue CPR that one more second, that one additional second that brought me back, both times I coded? We live with the reality that Ehlers-Danlos has been tearing apart my joints, bones, my organs, much more than the Chiari ever has though the CM has caused the brain surgeries and subsequent seizure disorder. He understands my lack of fear, if not my frequent outright desire, for the pain and never-ending complications to end.

In the morning I have my 2-week appointment with the nephrologist (kidney doctor). I hope she can do something about this horrendous daily itching that has me wanting to claw my skin off. It's so awful it gets me in tears and I just shake from it. I had no idea itching could be full-body like this, and so incredibly severe. I'm also hoping to find out if the pain up underneath the right side of my rib cage is related to the kidney problems. Hurts to breathe, to the touch, the last few days.

Tomorrow is also my eldest child's birthday. He's turning 11. Where does the time go? Happy birthday baby.

*I am going to be adding a TON of great NEW medical studies to ALL of the categories you see to the right side of my blog over the next few days: Chiari, Ehlers-Danlos, Syringomyelia, Thoracic Outlet Syndrome, etc. Be patient and keep checking back in so you can print them out and take them to your medical, dental, therapy providers, children's school for 504/IEP use, etc!*

Seizures, Kidneys

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

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

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

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

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

Just Walking is Hard to Do

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.

Sticking my neck out

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

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.

Giving a 7 year old bad news

We have known really that DS is an EDSer. We've known a couple years now since his symptoms of popping/hurting/dislocating became prominent.

At his recent annual well-child check his pediatrician decided it was time the two of us go see the hospital's pediatric genetics department.

We went this morning. I was examined, followed by DS. There is no doubt left. He has extremely prominent loose joints.

They are putting together a packet for the pediatrician and the school. They have to understand that under no condition does he play basketball, soccer, football, or anything else that extends his joints. He can stick with running, swimming, and bicycling, with swimming being the best option.

I feel badly for DH, who was an excellent football player and scouted by the pros but couldn't go any further once they found out about his multiple extensive knee rebuilds. He dreamed of having a little boy take after him.

Thankfully though I think there is some comfort in knowing DS can still be a great triathlete! He is a great runner, a little Forrest Gump, and is a terrific cyclist.

So, not all hope is lost. Knowledge is power and at least we know how to prevent all the damage I did by doing all the wrong things growing up. He hopefully will be saved a lot of heartache and hurt.

Using joints wisely (EDS/arthritis folks, wonderful guide)

This is by far one of the best tips articles I have ever seen, especially for those of us with EDS and/or arthritis.

I linked it straight to a particular page, but if you scroll around, you will see they also have a multitude of very helpful pages. I think overall this is one of the best educational sites I've ever found.

I know we are not all able to work outside the home, but there are also tips for car, kitchen, bedroom, bathroom, laundry, etc.

UW Medicine - Orthopaedics and Sports Medicine

Ortho Man

SO I have a pretty bad rotator cuff tear and bursitis from Ehlers-Danlos dislocations. I'm being sent back to my PT for 3 weeks then see him again and will try cortisone (like I don't have enough of it in my body already from hip injections) and hopefully put off surgery for awhile.

It's always nice when you call your PT's office to schedule a return and they ask what it's for this time.

Pain Man appointment

Pain Man walked into the exam room and just went, "What the heck happened?"

I sighed and just said I had no idea. He went ahead and did what Urgent Care and the hospital never thought to--he actually did an exam. I leaned against the wall in a push-up stance, back and forth a couple times as he watched my shoulder blades and spine.

After he had me turn back around, he raised a finger to say something, then stopped and said, "You have a lot of WEIRD stuff."

I gave an exasperated laugh and asked what else was new?

He said he knew what the problem was, and touched the exact spot near my shoulder blade that feels like it has the knife stuck in it. That verified that!

I damaged my left Long Thoracic Nerve. Typically those who do this are young healthy people who join the military and end up frequently wearing heavy packs on their back. The few others who get this injury are those with Ehlers-Danlos or other connective tissue disease.

Pain Man also said there is still the possibility that there is damage from the artery surgery (arterial Thoracic Outlet). Internal scar tissue complications apparently begin after any surgery at the 2 1/2 to 3 month mark; I just reached 2 1/2 months. It can be verified with EMG but not until at least 4 months post-op, so there is no use having it now since it would be inaccurate, not to mention it's a painful test having needles jammed in a couple dozen areas around the body.

He prescribed a medication that has been recommended the last few years. I have refused it consistently, as many people have an issue with the common side effect of weight gain. As a recovering anorexic this is a huge deal for me. But with so many complications going on, I know there is simply no way to avoid it any more. I need the med. I will slowly titrate up because of the multitude of side effects commonly experienced, and will end up at 1800 mg a day after a couple weeks, a rather hefty dosage.

I took 1/2 of a pill (300 mg for the night) and in the first hour I experienced 4 or 5 heavy-duty waves of dizziness.

It may help me sleep more than 2-3 hours a night, as is my average.

Fingers crossed.

Update

I spent Saturday and Sunday at the hospital. I saw 3 doctors, none of whom knew a darn thing about anything I have. They took x-rays (shoulder and chest) and took a ton of blood for some odd reason that no one could explain. Sleep was impossible so it made for a very long night.

I didn't get enough sleep last night of course. I showered after being discharged but just couldn't catch up on sleep in one night. Hopefully tonight will go better.

Today was insane at work, sheer chaos due to the company's VP mixing up the dates of an important temporary project I'm helping them with this week. During my second shift this afternoon I ended up in tears, called my immediate supervisor, and told them the job's hours are just killing me. Though employees are required to work 20-25 hours a week, she offered to find out if they would accept 10.

I haven't heard back yet. I don't even know that I can continue even if they do accept. I imagine they will, as I'm the only agent that is not only meeting commitments but is ahead of schedule.

I just don't know. Yes it's income, certainly not much, but at what cost?

I see my pain man tomorrow, and my ortho surgeon Thursday.



BTW if you are a patient/caregiver and follow medical articles, a few days ago I added some newly released studies to the links on the left-hand side of the page; I just never had a chance to post about the update. There's some good info in there. Newly posted studies are easy to spot, thanks to the **NEW designation.

Ehlers-Danlos, Private Enemy #1

Four days ago I started having stabbing pain on my backside, half-way between my shoulder blade and my spine. Yesterday it became tremendously worse. This morning, it was terrible and when I used a mirror to take a look, I could hardly spot my shoulder blade through all the swelling.

X-rays didn't show any fracture but it did reveal that the bones are not meeting meeting together properly in my shoulder joint. One of the bones is also extremely small and thin. They said it needs an MRI and wouldn't be surprised if it needs surgical repair.

When going over my medications they learned I see a pain management physician so they called him to ask what to do about a prescription so as to not violate my contract. He discussed Ehlers-Danlos Syndrome with them some more, and had them wrote me a script to add another narcotic to my daily grind. He's having me come in Tuesday.


Thursday I will see the orthopedic surgeon who handles my hip.

I'm supposed to be immobilized in the sling until then. Don't think so!

Work, paint, and hips

I'm finally getting a routine down with work and not having to rely on a couple dozen pages of guides to get me up and running. I use 8 programs through the virtual private network to do the quality control analysis. It was a bit frazzling at first but I've got it down now. Only half of our training class passed the certification exam.

All of our calls were being verified by our supervisor for approval, but at the start of my shift she let me know all of my audits this week have been great and I don't need monitored any longer. I was let loose! I'm ahead in production (number of audits), ahead of the minimum required. I'm the only on my team on my own right now, which feels a little weird.

I also have been approved for the time off I needed. We've had tickets for months now to go back to my hometown in Florida in March. We're going to see my brother and his wife and my nephews, my parents are coming out from California as well. We'll all do Disney together just like I'm home again. (I lived near it.) Sterl and the kids have never been to FL. I'm going to show them my old haunts, take them to Kennedy Space Center, my grandparents, etc.

I'm still pretty tired but then again I didn't get to sleep until 4:30 this morning, and was up by 5:20 to go over some things before starting work at 6. Sterl made a good point that my hip's sudden flare-up may be from the 4 hours of work in the mornings. I'm trying to help things by standing up during the minute it takes to save an audit upon completion, stretch in the chair if there's a hold time during audits, and the like. Today is indeed a little bit better, but I am anxiously looking forward to seeing the orthopedic surgeon Tuesday for the appointment I just made. It's sad to look forward to a cortisone injection but it's the best bet for relief of my pesky dislocating hip. After it kicks in hopefully I can sit without it being so dang painful.

Our house was repainted this week. It looks great, so much better than I anticipated. The fixed the stucco damage, sanded and caulked the fascia (it was getting in BAD shape and the wood would have needed replaced before much longer) before painting everything. They also painted the front door (didn't know they were going to) and our security door. That was desperately needed as well, and it looks fabulous, even better than when we first had it made.

We're going on a couple errands, get out a bit, get some fresh air. I have some magazines to trade in at the bookstore. Hopefully we'll find some movies from our wish list to get with all the trade credit we have.

I think I'm starting to come out of my funk a little bit. Pain is still an issue, I guess it always will be especially due to Ehlers-Danlos, but I really think settling into the swing of things at work is helping.

Checking in

Thanks friends for the emails. Sorry I haven't been keeping up-to-date here.

I'm 12 days post-op. I'm hanging in there. I took my sutures out on the night of day 10, should have left them in longer like I was supposed to. I was impatient and true to being an EDSer a bit of the incision was open the next morning. (Isn't Ehlers-Danlos fun?) It's covered, clean, etc and I'm not worried. The scar will just be worse and at this point it's just one more anyway.

I've been keeping up the happy face pretty well I think. The surgical healing is going well but I've had frequent spinal cord pain that's been kicking my butt and wearing me to exhaustion.

Add to that this cold that I hate to admit I have but after sneezing half a zillion times tonight, it's hard to deny it any more (dang it). I feel like hammered crap. Being in denial somehow doesn't keep colds from getting worse LOL.

Oh, about my 5 year old daughter's CPAP progress: This whole thing started in March, she had sleep studies in August and Oct 1. After the doctor's office sent a partial script for the machine, the home care company had to track down the rest of it herself. The problem? She said our insurance will probably not cover DD's CPAP. I was shocked. She was submitting it anyway to take a chance but she was about to call the pulmonologist and request another prescription. This time, the script will be for oxygen at night; she is sure insurance will pay for oxygen. DD's oxygen saturation levels were around 69%, horribly bad. I am so aggravated. It's unbelievable she may not get the CPAP, as bad as she is. And with a 69% sat level, no wonder she turns blue. The kid needs help and now we are back in the world of insurance idiots.

It's not the end of the world though and life will go on. I will keep sticking with it and she will get the help she needs!

Papers for health emergencies, not a fun task

I needed to do some updates to my emergency paperwork since surgery is being planned for next week out in Baltimore. It had not been altered since my spinal surgery earlier this year. Thankfully the surgery went well and I only had typical EDS complications that delayed healing by a few months. Nothing like the 2005 mess.

Part of today's paperwork is for J, who will be taking care of the kids and Wolfie and running the show. So far I've completed and printed insurance information with permission to treat DS and DD in case of emergency. The advanced directive and medical power of attorney papers are printed.

I only have a few days to peck away at household things, as I always try to leave it clean as possible before I go away for more than a day or two. I've wanted things easier for the people who take care of my kids. I know no doubt I would be told to not worry about it, but there's a wee streak of anxiety that it helps to control. I can't do anything about the trip, the surgery, or the outcome, but these are little things I can do.

I know my paperwork needs updated though. My head knows it. As my DH and I have discussed, I just can't again go through what happened 2 years ago last month. If it happened again and I was able to be brought back, there's still down time from lack of oxygen during CPR, etc. A full recovery would mean that with work, I would return what I'm dealing with now, and we already know those outcomes.

On a bit more positive note, I found my MedCure card. I'm registered for whole body donation. I hope in some way this collection of "weird-ass diseases" (thanks pain man!) may help with research. Our body is just a shell holding the soul until our job here is done, at least in my own opinion. I can't understand not trying to have some good come of it when it's time to go.

Baltimore, here we come!

It's been a big day around here. I gave the info below to friends this morning and if they see this hopefully no one minds I'm putting it here. There are so many details I can't even think about trying to write it all down again!

The Baltimore surgeon is supposed to be the best in the country for the thoracic issue, the one I mentioned previously that lives in Baltimore but makes AZ trips every 6 weeks or so as they have an office here. I found out last week though that he no longer makes the trips here so they asked me to come there. I said that's fine, there's isn't a "network" with Medicare. Then they dropped the bomb on me and said they don't take Medicare, period. So his nurse wrote him an email about me and the EDS situation, asking if he thought if any of the other surgeons that still make the AZ trip could help me. That was Thursday or Friday.

They called this morning and the surgeon said forget AZ. He wants involved in my case directly and said to bring me out. They'll take care of the Medicare issue through their institute.

I shook about all day because he said get me out there--as in, next week. On the 29th. Of October. In Baltimore.

If I could I would have been bouncing all over the walls. The nurse said the surgeon is going to call me himself within a few days and discuss the trip and the surgery. He wants me to be prepared for what it will be like since it looks like I'll be out there for a week.

Did I mention if after the exam if he decides he can get this done safely, he'll do the surgery that week?

Ok, I admit it. I'm scared and freaking out and wish I could be DOING something productive. Booking the flight (they said wait for Dr and the nurse's next call so they can work on the testing schedule so I know when to be there and when it will be ok to come back, right now only have regular appt scheduled, not the tests), what to do with the kids, the dog, SOMETHING.

(Dallas) We have a problem

Texas called this morning. The vascular surgeon in Dallas was looking at some records I took to the local cardiothoracic surgeon, thinking it might help him. They were just some tests I had done during the month I was in the hospital after the couple of resuscitations following the brain surgery in 2005 that went really wrong with the codes.

He was reviewing the 2005 imaging and apparently saw right off the bat that there was an arterial problem back then.

Nice call. Wish they would have spotted that back then. Guess NY was right last week when they said this would explain why things have continued to worsen neurologically despite all the surgeries, and that it changes the structure of the neurological system.

NY is faxing some paperwork to Dallas today after this development.

So for now I wait again but not as anxious. I know everyone is working on this and not just sitting around. I'm trying to just relax. I've been up since 3 and I'm finally having some breakfast now that it's 10. And thanks to EDS I dislocated the right side of my jaw in the process.

Gotta love Ehlers-Danlos.

DD's sleep study, Take 2

It took a good hour to find a mask that would fit right. A baby mask got close but air leaked out and she freaked, cried for ages, complained of a tummy ache "from breathing all that air." You know, the whole 5 seconds she breathed it.

Eventually they found one that was an instant hit and she stopped the waterworks. It covers her nose and mouth instead of just the nose. Then she cried during the whole wiring set-up process but I eventually got her to stop with a bribe. I promised to get her little donuts this morning if she got through the night with the mask. What can I say? I was afraid she was disturbing the other patients with her incessant sobbing. Remember this was in a hospital, not a sleep lab, due to her age and some rule from the pulmonologist that I don't understand.

We got into bed, DD with the CPAP on and running. I kid you not the child was asleep in FIVE minutes. Not the usual 4 hours (I took a bag of multiple new skeins of yarn, prepared to start a project). It was SHOCKING. The hose came unplugged a few times during the night so they kept coming in to fix it, turning the light on each time. It was a long night, with her ending up sideways along her pillow and her feet in my armpits.

They gave us the boot before 6 a.m. Meg slept the entire night. EIGHT hours. Not her normal 3, maybe 4. EIGHT!!! She had to be woken up for us to leave. She would have slept longer.

So, now we wait for the peds pulmonologist to take a look at the computer readings done during the night and get home care out here and set her up with her CPAP machine! When we climbed into bed last night she called herself Papa's Girl because she was using a machine like him. Her sensory issues were shockingly NOT an issue with the mask, only the wires. The mask she was in control of (helping pick it, set it up, etc) and I think that helped tremendously.

It is currently 2:42 a.m. and I am exhausted. I had one good nap not too long after we got home from the hospital. I tried for another later but it didn't go well. I haven't been to bed. My pain level has been uncooperative, shall I say? Right now I'm on a double dose of Dilaudid, a Zanaflex, Depakote, and a few Topamax. So far, not much good. It's been a rough few days of EDS pain, worse than my head pain. I'm thinking the hospital bed threw what was already unhappy into a flare.

One NY update

I was talking to a good friend today about the conversation I had with one of the neurosurgeons in NY who called earlier. He couldn't believe about yesterday. He said the thoracic outlet surgery has to be done, but that if the cardiothoracic doctor said he wouldn't do it wouldn't of the Ehlers-Danlos, then maybe he was doing us a favor and we'll just find someone else.

He emphasized that leaving this alone is completely not an option. He said the two of them that I saw the last NY visit were "impressed" with the symptoms I had from it. (All they told me then was they were sure I had it and I needed to call a surgeon when I got home; if I knew the extent then I wouldn't have put it off for 2 months.) Hee said leaving this untreated is serious enough that it alters the vascular, arterial, and the neurological system. He said it's the first thing that needs taken care of right now. I didn't expect that.