Huffington Post article reader? More information for you!

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

Huffington Post Article about Shelby and Her Person!

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

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

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

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




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

Seizures, Kidneys

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

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

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

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

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

Surgery 16 update, ER trip, seizures & such

I made it through my 16th surgery about 6 weeks ago. I had a post-op check today; it was originally 2 weeks ago but they said I hadn't made enough progress and made me come again this time. Thankfully two weeks made the difference though! My incision is behaving well, contrary to what Ehlers-Danlos would like for it to do.

My seizures over the last year have done nothing but worsen despite getting up to 600mg on Topamax. After things seemed to even out with the surgery, I had Keppra added on to my medication routine a couple weeks ago. I quickly noticed my headaches were increasing, and badly. I developed a low-grade fever and had bruises all over, more than normal anyway.

They hit a peak earlier this week on Monday morning. When I woke up, I immediately noticed the noise in my ears was bad enough I couldn't really understand what my husband and children were saying. I couldn't eat, was dragging, and in tears all day. My husband that night tried to get me to go to the ER and I would have agreed but for the 7:30 a.m. dental appointment both of our children had the next morning; we are losing our insurance this month and this appointment was to lead to dental work, so it couldn't be delayed. He knew though when I didn't fight going in after they were done, it must be bad. I usually save hospitals for surgeries and cut arteries. Our plan was for me to accompany them to the dentist, find somewhere to take the kids right afterward, and take me in.

By morning, the vomiting hit. There was no way I could go along. My friend came over and took me to the hospital while my husband and children were still gone, and stayed at the hospital with me the entire time. I didn't even have to sit down in the lobby, when I told the girl through the window that I'd had multiple brain surgeries and it felt like my ICP (intracranial pressure) was up, that I'd had 24 hours of hearing loss and vomiting, they instantly brought me in to triage where it showed my heart rate was wonky, then straight to the windowed room in front of the nurse's station.

I got the usual lines for fluid, pain control, and nausea control. I went for a CT, had the usual blood and urine tests. In a nutshell, I don't agree with the Keppra and stopped taking it. I also have a urinary tract infection, which of course didn't cause this whole thing, but they said it's severe enough that they wouldn't be surprised if it was adding to the pain. So I'm on 1500mg of Keflex for the UTI as well.

As for the seizures, the thought has always been that they are due to the fact the right half of my brain is tangled up in scar tissue from my 9 month bout of meningitis from the fiasco of a brain surgery at THAT place in Phoenix.

Now though, after a year of not only no response to anti-seizure medications, but continuous worsening of the seizures has my neuros now believing they are originating not from my tangled up right half of a brain, but instead from my equally scarred up brain stem. It does make sense, but it is not really news we want to hear.

That's pretty much all I wanted to update on today. It's been a long week and I'm tired, still dragging from the events of two days ago (my children actually ended up having three teeth extracted between the two of them at that appointment when I was at the hospital, it was bad enough the dentist wanted to deal with it right then and there) so I'm going to sign off for now. There is a whole lot more going on than this, boy is that the understatement of the year, but I'll leave it at that for now. Prayers or thoughts would be tremendously appreciated for our household.

Assistance Dog update

For anyone late in the game, my Rhodesian Ridgeback 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, empty clothes dryer so I can fold, open doors; when in manual chair, help pull, 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 running back to back.

I have a couple dozen seizures a day but on one particularly extreme morning, my husband took a great picture I 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.

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 Cairn Terrier Gizmo). We were drawn to Shelby and our hearts knew we had to bring her home. A month later, my disease progressed into seizures and I’ve had them daily ever since, and she could detect them before we could.

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.

Scooters and Seizures

I still don't have my legs back. We took my (mobility) scooter to the shop Monday and they fixed it yesterday. Unfortunately we couldn't make it into town by 5:30 so pick-up has to wait. Ah well, it's an additional day to not part with the $254 charge.

Seizures continue and not 3-4 an hour but still more a day than I care to admit.

Iam exand wonder what the point is of all this, and if i care.

Sick of hospitals

Thursday I came home after 6 days in the hospital. My seizures were occurring 3-4 an hour and becoming increasingly violent. After DH being sure I was not breathing, he took me to the hospital. Seizures in the ER confirmed he was right; with each one, the monitor alarms went off. My 02 sats dropped to the 70's and instead of my heart rate skyrocketing, it plummeted. And long story short, I was admitted for 6 days.

I came home on another AED (seizure med). DH thinks they're helping a bit. I'm still seizing but not nearly as often.

I have a clinical trial check-up Tuesday morning and pain man appointment Friday afternoon. My mom is here from out of state so thankfully she can drive. I am anxious to tell Pain Man how his staff refused to give him messages about my situation not once but three times.

My pain control is not doing much at all. I dread getting up, sitting down, getting in and out of bed, whatever.

I don't know what to do any more. I am exhausted, and tired of relentless intractable
pain.

Here's a pic of me a few days ago in-patient, waiting for yet more imaging.

Day by day

Things around here haven't changed. DH had to do a digging sternum rub for 15 seconds straight yesterday morning before there was any response. I don't know how long I had been unresponsive before he saw me.

This isn't a typical case of seizure disorder. Having uncontrolled meningitis for 9 months left me with arachnoiditis, a permanent, incurable condition causing intractable pain. All my brain knows how to do is grow scar tissue, around the clock 24/7. Every surgery increases the rate at which it grows, which is why my problems have no cure or treatment.

My NSG team strongly suspects the scarring that has been taking over my brain the last couple of years has now reached my hippocampus, explaining one of the types of seizures I've been having, the ones I've been having 3-4 an hour for the last couple of months. I don't know yet where the convulsions-type are originating from yet, since none of the local docs are calling me back with recommendations for local help.

I've been on pretty much all the AED meds already, since they're typically also used for HA and/or neuropathy as well. I've usually taken 2 at a time, though they've been switched around periodically. I'm on 2 at the moment and as usual, in large dosages of both.

Obviously they aren't helping.

This blog has the ability to leave comments or send emails. If you have something to say about this, please say it to me and not leave me as the object of discussion amongst yourselves. I don't like being the focus of what really feels like gossip. I don't think most people realize how much that hurts, and I don't need or appreciate it right now.

To all of those who have written me with thoughts, prayers, recommendations, suggestions, and advice, I appreciate it more than you now! Even those who write to say they don't know what to say but they're there, I understand and it means a whole lot just the same!

Unexpected news. Feelings of defeat.

Today, I met defeat face to face. It never had a name before. Yet on this day it intruded into our home, into our lives.

I've had some troubles the last couple months. Long story short, all of this has been due to temporal lobe seizures. Today I was diagnosed with epilepsy.

Suddenly everything makes sense. Sterling only today reported spotting me several months over the last month staring off into space not moving, asking me multiple times if I'm ok but me taking a couple minutes to answer, confusion, then angry.

I don't remember any of that. What I have noticed though, as have online friends, is that when we're "talking" that without warning I break a sentence and without missing a beat saying something completely unrelated, often nonsensical (sometimes in English, sometimes German, etc.)

Come to find out that my near-daily fight with nausea and vertigo, the passing out, all are signs of this kind of seizure, or pending onset.

Enter defeat. I don't know what to do with this.

The unexpected cost of pain control

I was remembering about my time in in-patient rehab following my time on the ventilator, learning to speak and walk again, how I fought pain meds tooth and nail.

Despite 6 ½ hours a day of intense therapy, I wanted to be a super-hero and take only the lifesaving meds: heart, anti-seizure, blood pressure, and the like. One night though, late, I was in bed on my side grasping the rail in pain, trying to keep my sobs to myself.

Eventually the two nurses who’d checked me in from the other side of the hospital (crying at the time) and spent a lot of time with me just talking, came in. Someone had gone by, heard me, and let them know.

They told me they’d seen others like me try to mask it, the pain, and it only served in less effective therapy, higher stress, & raised blood pressure, all because of being stubborn.

I told them (with my best "mask and fake you're ok" smile) that my family prefers to call me "bull-headed."

One of them said, not smiling, they call that "dead," because they see people stroke out & die from that stubbornness, directly. They wanted me to understand that I just can’t sit and suffer like that.

So I took the meds and haven't fought them since. I have never forgotten the lesson I learned that night.