May 26, 2008

Sitting in the Dark...

It's late Sunday night and I've got to sleep so I'll probably start writing this then finish it on Monday or Tuesday...But I wanted to start it while I was still up. I am still a bit shaky vis a vis this Herxheimer business...Feel like I am in the midst of a hurricane at the moment, sitting in the dark of my bed/sitting room with the people all around me yelling and screaming and Indians whooping and hollering and all sorts of hallabaloo going on...even though I'm aware that I don't think any of it is actually happening. I feel like there are people sitting right across from me watching me type and staring at me doing it even as I sit here! So I dunno how to figure out any of it...I'm just trying to get out from under one thing without another faling on top of me....(I went to bed. What follows is written the next day, Monday.) What I wanted to explain was that It was Kennedy, Ted Kennedy's brain tumor this past Tuesday, that announcement , that really tipped me over into despair and anguish and started the downward cycle last week. I'm embarrassed to admit this, not wanting to seem a groupie or a celebrity hound or something, but because it was always my feeling that I had been responsible for JFK's assassination ( I was a sixth grader ignorant of the politics but not of the "romance" of Camelot ) that somehow whenever something bad has happened to the more nuclear Kennedy family, my heart crumbles...It happens more and more now, as the years pass, actually. I don't know why. But in any event, the news of Senator Kennedy's illness on Tuesday, coming just when I was leaving for my writing group, was probably a bit too much for me...along with the Herxheimer thing doing whatever it was doing and the two collided and combined to do a number on me.

My poor dear Joe is almost complete paralyzed now. Oh, his face is rather mobile, he can make faces, and lets me know when I've made a mistake in guessing what letter he wants on the alphabet board, but he cannot point to what he wants or even tap a bell most of the time (sometimes he is able to do so, and we can have a phone call of sorts). But he cannot communicate witih the nurses enough to tell them what he needs or let them know when he is in pain, unless they specifically ask him the right question. For instance, the other day, they did ask him if he was in pain, and he "said" yes, but when they said "where" he pointed as best he could to his back. He pointed only to his chest, meaning through his chest to his back. But naturally they could only see what he was pointing to and believed he was having pain in his chest. Few bother or have the time, lord knows, to spend it scanning the alphabet board, line by line, letter by letter to let Joe laboriously spell out the words to say what he wants to say. It is truly awful to know how nearly locked in he is, unless Gary or I or Karen is there to find out what it is he wants (and frankly I dunno how much Karen finds out, because she doesn't do the scanning well and is unable to stand up for very long to do it in any event...)

Karen is angling to get Joe to hire a case worker, a private social worker for some reason, probably because he won't pay her to do the few things that he needs, and she thinks she can wear me down by refusing to help ME, maybe even driving me crazy, and thereby forcing Joe's hand. Meanwhile, all she used to do for pay, has fallen on me, which is not that much, only scary for me because it involves phone calls, and also difficult for me to remember to do, given my memory problems, and time constraints...It would help a lot to have some, well, help, frankly, from SOMEONE...I just dunno who would help! Josephine would, I know, I just never think to ask her to do so. And I ought to call on Joe O, my Joe's cousin more. But I'm afraid that he works so hard and won't want to take on the added burden. He just has no idea how difficult all this is on me. Nor how much is on my plate at the moment, what with Cy and other things I don't want to mention until there is some resolution on them or at least some solid facts I can talk about, rather than fears and worries...

Fears and worries...I feel, yes, like I have to keep them to myself, suffer in silence and not bother anyone. Why? Because as I was always taught: Pam is stoical, Pam does not, must not show or even have any feelings. So I have swallowed them, forced them under, ignored them to the point that I refuse to feel anything I might ordinarily have felt.

But if I did have any feelings? Well, let me pursue this a bit.

First of all, What am I talking about? I speak of a series of blood tests that seem, and I emphasize seem since it is only information gleaned from the internet (and Lynnie's stated concern) that provides the occasion, blood tests that seem to indicate I may have renal disease, stage 3 (not at all mild, that is to say). Why do I say this? Oh, I shouldn't go into the details, except to cite both creatinine and the eGFR which numbers are both respectively higher and lower than they should be, by a significant amount and have been progressively getting higher and lower since at least December of last year. This itself is not good, since it passes the three month mark that the Internet sites I looked at mark as stage 3. Now, be assured, I do not know at all if any of this is absolutely true, and may not know even tomorrow, when I see my PCP, who is also, by happy circumstance a nephrologist . But I hope at least to have some clearer picture of what I am looking at or where we go from here. If not, I fully intend to switch docs immediately, as this one has given me nothing, been no help to me at all otherwise; he does nothing for me but refer me on to specialists, even when I don't want to see a specialist! But now he is the specialist I need, so push has come to shove and we'll see what he is made of...(I should explain that one HUGE problem is that this Dr C is a DO (doctor of osteopathy), not an MD, and there is a conspiracy of DOs in this area against me. I suspect he is in it and is colluding with all the other DOs to get rid of me -- by hook or by crook...This is what I have to fight against, evey time I see him, on top of all the other problems!)

But to get back to the Pam the Stoic theme: So, if I have stage 3 renal disease, what about it? How do I feel, now, worrying? And what am I anticipating I'll feel? Or what am I refusing to feel? Ah, big questions, hard questions...

One feeling that is on the tip of my tongue, so to speak, or forefront of my mind (?) is some anger, alas, anger that NO ONE bothered to tell me earlier to see a doctor...Not even Lynnie, no not even she. I can't understand it. Dr L, who did the blood tests, simply sent them to me, month after month, circling the results but never once told me what they meant or called me to alert me to anything being seriously amiss (which of course may mean that nothing is, in the end...But then, why is Lynnie so concerned?) What kind of doc does such tests monthly, routinely, and sends them to me, then doesn't keep track of the results closely enough to spot a trend and make note of it, and alert the patient to see another doctor? I live an hour and a half from Dr L. I could not easily see him, nor is renal disease his thing. But he should have told me to be seen up here by someone else! He should have been on his toes and noticed as indeed he did! he circled the result but did not tell me what to do or what it meant, so naturally I did nothing, he didn't tell me I should do anything! -- otherwise why bother to serially perform such tests????? As for Lynnie, she did notice the on-going abnormalities, and did worry, but she never told me to see a doctor about them. She got mad at me, BLAMING me for doing whatever I was doing wrong...Yes, she did do that. It was my fault, always, I wasnt drinking enough, or was drinking the wrong things, or wasn't eating enough or the wrong things...NEVER acknowledging that maybe the meds themselves were to blame. NO I was the one at fault ALWAYS...but never did she tell me simply to go to a doctor about it. Even tomorrow's appointment was made because I wanted to see Dr C about my osteoporosis, not possible renal disease...So, that's how I feel, or part of it, ANGRY...Angry...P.O'd...upset...worried...what's done is done and who knew and would anything have changed anything?...I feel, well, how do I feel? I feel more in limbo than anything. Invulnerable, not really scared. I don't believe anything could be wrong, or is wrong. I feel fine. Why should I worry? They are only numbers. Numbers can lie! Wouldn't I have symptoms? (Need to look them up...)

So I'm either the stoic, still, or I really cannot borrow trouble in advance of trouble's descending. I just don't feel like worrying. What is there to worry about? Dying? Feh! If I am going to die in, what? how many years? I don't think it would be all that soon, FINE, I do not want to live in the chaos and rioting and social instability of a globally warming world, esp one running seriously out of oil or once the seas begin to rise...So give me two, three , five years? I don't care -- that would be enough, as far as I'm concerned...I might want more, if social stability continued, but I could "live with" ie die with less.

Eek, I'm being awfully morbid. No one is saying I'm dying yet!!!! BD No one is even saying I have kidney disease! I've just indulged an urge to google a medical test I didn't understand and I may have completely misconstrued the explanation! If so, I deserve the worries and panic, such as they may be, that followed.

Readers, do not weep for me just yet. Let us wait and see what Dr C says tomorrow, okay? I suspect all is perfectly fine, and that I am in ideal health and tiptop shape, not a thing wrong from stem to stern. Okay? I just did want to allow myself the chance to say what I needed to say, without holding back for once, just for once. I will not do it again. It is simply too melodramatic for my taste and too over the top and risky in terms of others feelings, in case I am wrong...

Remember: I know nothing for sure, except that I know nothing for sure.

Posted by pamwagg at May 26, 2008 02:02 AM | TrackBack


Pam, I'm glad you shared your worries; it's the smart thing to do. Holding fear inside just makes everything worse. I admire now and always have your straightforwardness, intelligence and sensitivity. Whatever you find out tomorrow, I think you will be okay. If you're ill, you will live life fully while you can and if you aren't, you will still live life fully. The main thing is to defuse worry whenever you can and focus on practicalities, what you CAN do to help yourself, to tap into the joy that's still within reach.

Keep writing here and let us know about the doctor's visit. I will email you. You're in my thoughts and thank you for sending me the photograph of yourself. I have started on your portrait.

Posted by: Kate K. at May 26, 2008 11:53 PM

Post a comment

Please enter this code to enable your comment -
Remember Me?