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?)!

church's & society's bastards

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Ehlers-Danlos Intervention

We're watching the last few minutes of Intervention, and we are floored by this woman blaming Ehlers-Danlos for her problems. When it came time for the intervention and the director 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, but still wishing there was a way to get out of here. It would be great to go somewhere we could life, such as getting C in Boy Scouts again. They started meeting in an inaccessible location here so we had to stop going; they told me if they moved to a location physically accessible to me they'd let me know so we could return. I also tried to see if any of the parents would be willing to pick him up along the way to taking their boys to the meetings, but no one ever wanted to. So C has missed the last two years of Scouts because of it. It's upsetting because there are very few non-physical activities available so he's out of luck. He basically has to sit back and watch M run around and have fun. How do you explain to a 10 year old he has to stay behind while his 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. 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. I just have to find a way to GET him there to do it! Living here though just makes things so incredibly impossible.

Holding out Hope

There comes a point in life where you realize that if you are unhappy, then sitting around and talking about it isn't going to get you anywhere. This place is becoming more dangerous all the time due to our proximity to the border, 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 my physical progression continued it apparently was too much to handle because our church family slowly but surely disappeared. It angers me all the more since those with leadership positions who teach various classes related to Christianity and becoming a contagious Christian seem to be exempt from following what is taught. So now they are gone, I can't work so that connection is gone, and DH no longer works for the state. The lawsuit will continue no matter where we are.

At this point I think we would take a job nearly anywhere. I love our house here, the big foreclosure we got for a steal 2 1/2 years ago. But I'd give it up in a heartbeat to get out of this place, to go somewhere where we don't have to go through painful feelings just because of living in such a small neighborhood and everywhere you pass by makes you think of those people and what has been done.

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

Last week it was 103 out, our a/c was dead, and it was 88 in here. The a/c was dying slowly for over a year and finally completely died. 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 had done a face-plant onto my coffee table and slammed my face around my eye.

And in other news, 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 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. I've been gaining 5-10 pounds a week for the last couple months despite almost no appetite.

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 a couple days. 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. Like my feet and the creepy indentations I can make?