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?)!

Community

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

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

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

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

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

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

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

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

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

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

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

Mortal sin?

Do you think suicide is a straight path to Hell?

Or could it be possible that God, in infinite wisdom seeing into our very being, understands the desperation in which a person may end things on their own timetable instead of that of God's? Would he take us into his arms, forgiving and accepting us to stay with him forever, knowing how impossible a task it was to just sit and breathe through non-stop pain, trying to get through the endless day?

Is it really suicide when someone living in a cloud of confusion caused by relentless pain takes too much medication, not being able to remember their last dose of meds? Does God understand taking one extra dose that can be the very end was simply an act filled with the one remaining sliver of hope of getting even a minuscule amount of pain relief?

Will God accept us with our mortal mistake and let us live and love him at his side forever? Or will we be banished to Hell?

Would that Hell be any worse than the pain we have here?