Brain & spine hardware rejection, depression & denial

Earlier this week I was to be seen by a neurosurgeon on his very first day in this town, but he unfortunately did not make it to town yet. So I am seeing someone Monday instead. It is in regards to how my brain is rejection of its 5 inch titanium plate, my spine's two 18 inch rods, and the 36 screws. The rejection has caused my 3 inch loss of height in a six-month time period, which at least shrinking doesn't hurt; the problem with it is that my shrinking is because my loss of 3 inches is because the 3 docs that have reviewed my imaging have determined the only way to lose 3 inches is to lose every bit of space between all vertebrae in the entire spine, from head to tailbone. In other words, they were all able to see that every single vertebrae in my spine is sitting directly on top of one another. From top to bottom all of the vertebrae are rubbing on each other instead of having the usual disc space that allows the spine to flex with the body's movements. So every time I move, all of my vertebrae just grind together, which is the reason I now have so many bone spurs throughout, from the constant bone chipping.

We're also going to discuss the increasing problem with my ICP (intracranial pressure). I'm having more and more episodes of high ICP; for those unfamiliar with it, having high ICP results in problems such as hearing loss, pulsating loss of vision, and vomiting if you move your head as much as two inches slowly in one direction. High ICP puts a huge amount of pressure in the skull, in the brain's blood vessels, crushes brain tissue, shifts the brain out of place, restricts blood flow to the brain, and worsens Chiari herniation (which of course can then impact brain stem responsibilities such as pulse, blood pressure, etc). Normal ICP is 0-10 mm Hg on lumbar punctures; on my 14, I've always fluctuated between 12 and 26. NY was going to do an in-patient monitoring for 2-3 days but that went out the window when something else came up. I've only had instant access LP readings, not the 24/7 intracranial monitoring, where they surgically implant a probe in the brain for a few days to have that 24/7 access to CSF (cerebrospinal fluid) levels. Obviously my levels have never been normal but I'm guessing before moving on to correct my ICP once and for all, that will likely need to be done.

Tomorrow evening I see PCP for stomach junk; this week puts me at a 28 lb loss, so I know I can't avoid it any more. This scares me more than the rest. It's unknown territory. I have no idea what it could be. Have I screwed up something with the piles of meds I've taken the last 5 years? I've already gone to the PCP twice about this but he pretty much brushed it off (this was a couple months back and not quite as severe as it is at this point) as the Chiari, or the meds. That makes no sense to DH or myself since I've had CM for years and been on the meds for years as well; people don't just lose this much weight in a couple months, have vomiting, inability to eat, abdominal pain, etc. And PCP just had to make that passing question about wondering if I'd had a colonoscopy before, saying if it kept up that'd be the first thing he'd personally check, so that's been in the back of my mind, wondering about colon cancer and God knows what else.

Honestly though, I think with everything that's gone on the last year, part of the reason I haven't addressed the health stuff, is with everything added together, that and the frustration of the other ongoing situation, I can finally say I know I should accept some help with it all. But I don't know if I care enough to take that first step and do something about it. It's not like if I go on anti-depressants I'll suddenly be free of disease, surgeries, intractable daily pain. So it's hard to find motivation to admit the need.

Social Networking & Denial

A couple friends wanted me to set up an account at Facebook so they could follow my health stuff more often. I wanted to say, "About everyone knows about this blog. Discovery Health Channel even knows about it and was able to locate and call me on my cell phone, is it that much trouble to add one more tiny little website to a bookmarks list?" At the bottom corner of the blog people can see the many countries where readers follow this blog, a surprising feature. When my friends asked, I felt they wanted to keep in touch with those who post within their networking page and if I'm not part of that, then it's too much extra work to follow my health; all this despite the fact that my blog has been in existence for 5 years already since I was diagnosed, long before these social sites, but why should I have to write everything twice? I gave in though, and am trying to link the accounts.

The reason I finally joined is because someone feels that if our local (church) group doesn't see me, then they probably assume I'm doing fine, and all of you regular readers know that is far from the truth. Anyone approved for 20-30 hours a week for home care through the county home health/hospice agency, anyone with 24+ uncontrolled seizures a day, after 16 surgeries, is not fine. Of course now I can't get the services since we're losing our insurance after what happened to my husband. But out of sight, out of mind I guess. So anyway, we thought if I came to the social networking site, and started talking about my days, they might get a clue.

I will say it's been interesting. People put notes about their children, clothes, coming home for the evening. Others agree, make some comments, play some trivia games. I share about hitting my face four times recently after either passing out or seizing (still don't know which, impossible to know when you're unconscious), ending up swollen, & you can guess how many comments I receive. Up go the blinders. Maybe somehow everybody managed to not see what I said?

What one woman said to me after church service when I visited after a year's absence (attendance is incredibly difficult physically, so I rarely attend) changed a lot of things for me, and not for the better. It was an unbelievable case of "Open Mouth, Insert Foot," but she was honest enough to SAY it and at least she acknowledged my existence:

"I know I haven't kept in touch with you over the last year, but it's just too hard for me. I don't like to see what this has done to you, and of course it also reminds me of Karen ***** too, so I just haven't."

My jaw about hit the floor. I didn't know what to say because I wasn't sure I'd heard her right. Did she actually just admit she had been intentionally ignoring me, knowing I was trapped at home, 24 hours a day, 7 days a week, full time for more than a year, while she went about her business? Yeah, pretty much.

Must be nice. I don't get the option to ignore my disease. I would LOVE to, trust me. I would give my right arm, give my vision, give them BOTH to have one day without pain, OR one day without a seizure. I'm not even asking for one day without both; that would be too much to ask. I remember having my, I think it was my 9th, lumbar puncture/spinal tap with extra CSF withdrawal. It relieved my intracranial pressure so greatly that I had almost no pain for 3 hours, other than the spine site where the LP was done. Then after the 3 hours the pain came raging back, since spinal fluid replenishes itself throughout the day. I nearly had a breakdown, and to this day I wish I had never had those 3 hours. They did nothing but show me how very altered my life had become. I had actually forgotten what it was like to not have pain, until I experienced those 3 hours. That small bit of time without pain was nothing more than a sick joke, and I wish to God I had never even had it since I can never have it again.

After bending over in my wheelchair and retrieving my jaw off the floor, I slowly said to her, "Um...Thank you for your honesty???" And thankfully at that moment my husband came walking over from his conversation with someone else and whisked me out the door and that was that because I don't know what I would have said next.

That was one year ago, and it was only last week that I told him of that conversation--if you can even call it that. We both agree that she surely did not mean to hurt my feelings, and in her own way was trying to apologize for not keeping in touch, but that the words came out horribly wrong. If she knew that I have been stewing over that statement for the last year, and it has kept me out of church on days when I would have at least liked to try to go sit through my physical pain at the service, she may be surprised. It's possible she hasn't even thought of her words ever again. I do need to discuss it with her to free this from my system, but for now, I need people to understand:

Those of you who know someone who is home bound, consider your work day. You have tasks to pace yourself through. You have goals, an end in sight, people to talk to, even if you do not care for them. There are changes in the scenery so to speak.

We have four walls around us that never change, and often even getting the mail is out of the question because that is too much of a strain. Getting our own mail would be a treat, instead of having to depend on someone else. There is no one to talk to. There is no task, no goal, no way to pace ourselves (unless you count 22 pills every 4 hours as being a step closer to the end of the day, often it's that desperate for the day to end), no calls to know we are not already forgotten and may as well already be gone, so why not give in to the temptation to take those few extra that would do the trick. We think it'll be different when the inevitable hospital stays come, because one of the church growth classes taught us a few years ago that a good general rule is to visit church members if someone has to be in for more than 2 days, but with all of my stays only 1 person has followed that rule; she has come every time. Do they think because I have had 16 surgeries that I must therefore be used to being in the hospital, so why bother visiting? Well that just makes it even worse! Being taken into the OR so many times, putting myself onto the OR table, giving my arms over to be strapped down, it has all resulted in me being diagnosed with a significant case of Post Traumatic Stress Disorder. Every time I go for surgery, by the time I get to the Pre-Op room, I throw up, bawl, and hyperventilate. What else can you expect after so many surgeries which have resulted in CPR, being on a ventilator, and an emergency c-section with 45 seconds' notice with zero medication. I have nothing but hatred for being in hospitals. Every second, every minute, serves as a reminder that my body has betrayed me which ultimately I can handle, but there is not only the physical pain to deal with, but worst of all about being in the hospital and not seeing anyone is the constant reminder is that I have yet again been abandoned and when I am gone, what is the point of having gone through any of this? Why should I even try?

My greater concern is for the woman who made the surprising comment to me, for people who intentionally ignore me to make their lives easier by living in denial; yes it may be easier on them now, but what happens when I am gone? I will be at peace, but everyone who has lived this way is going to have a whole lot to deal with because of having refused to look me in the eye, and in doing so, have refused to deal with your own emotions.

So, that's why I've joined the group. My pastor once said I had the capacity of helping the group learn to deal with their fears by facing my situation. As I've progressed, they have not had to see any of it, and it's high time to deal with it. All of us.

Angiogram tomorrow. Denial.

My angiogram that was scheduled because of yesterday's findings at the cardiothoracic appointment is being done tomorrow. I feel like I've been thrown into a whirlwind. I'm trying to drown myself in things around here today. My own little method of denial I guess.

The Golden Girls had a good bit on it once in an episode:

Dorothy: Rose, I am not in denial.
Rose: Yes, you are. You're just denying you're in denial.
Dorothy: Rose, honey, I am not denying I'm in denial.
Rose: If you're not denying you're in denial, then you're in denial.
Dorothy: Look, fluffhead. Why should I deny being in denial? I never said I was in denial, YOU are the one who said I was in denial, and don't you deny it.