Friday, February 2, 2007 - seriously long entry...

Friday, February 2, 2007

I started this on Thursday but got caught up in the needs of the day and never returned to this document to finish it so now we are on to the next day, again…I’m sorry to have delayed. Note that this will be a lengthy blog entry, and I do mean lengthy with lots of feelings and perspectives so read at your own risk of being inspired to write a soap opera about my current life; I’m presenting a reasonable script for a “B” movie or Soap on channel 3 at around 1:30 PM, weekdays.
We’re talking about 3000 words…see ya-

Current:
I was short on Wednesday’s entry, so I’m going to continue on part of something from that day.
When I worked at MPPC, I had one volunteer in my 5 years there; Joe Sinnott, my lighting engineer. He helped shape and define for me what a volunteer is. He was as dedicated as any paid employee; he was invested in all aspects of our global responsibility to the end result of a well produced service and was willing to carve out time, coming in on non-production days during the week, in order to pre-set and determine preferred lighting levels and script timings in order to provide the very best he could offer. I could not have been more proud to sit along side him for most my entire 5 years there. Joe set the bar for my somewhat unrealistic expectations of what a volunteer should be.
Coming to Fair Oaks, as it turned out, I did have some paid crew but over the 3+ years I’ve been there, the crew has become volunteer-based instead of paid. Without getting into the politics of 2003/2004/2005, I have come to know and be blessed by some of the most impressive and exemplary volunteers. If I name one, I feel like I need to name all, and rightly so, because if I were to leave off a name inadvertently, I could end up hurting someone’s feelings, which is the furthest from my intentions. It’s safe to say that our team at FOP was cultivated by God in our hard work and while we were heavy on the paid weekend servants when I was hired, it was clear shortly after that God was moving our team towards a volunteer-based team. I struggled against that for members of the team to be found who had expertise in the tech fields, in hopes of being able to bring them on board for very little pay but set them in positions as team leaders to lead the volunteers on a weekly basis. What God did instead was raise up leaders from within the volunteers and they became pillars and foundational pieces of the team, solidly participating, assisting, helping whenever called upon to serve, and thus, redefining for me what a volunteer is. In the same sense, it brought me back to Joe from MPPC. I realized that God raised up a number of Joe-like volunteers in a place where I thought I’d never see another volunteer like him. God showed me that He can and will create what/who He wants, where He wants them and showed me how to be blessed by them and work with.
I know that there are new members to the team now since I’ve been out on disability, so their names won’t be on here, not because I don’t appreciate them and their help and efforts, but because I haven't worked with them and don’t know them yet, or at this point.
Who have so deeply blessed me and my work at FOP by participating in the Tech Team? The following, to the very best of my recollection, including some who are no longer active on the role, in last name alphabetical order:
Carl Almquist, Austin Bennett, Jason Brasel, Madoli (Cookie) Cook, Erin Creasey, Tyler Creasey, Craig Fetter, Rob Fisher, TK Heberlein, Geoff Hidden, John Marlin, Jana Mentink, Chris Patterson, Robert Patterson, Gordon Serviss, Darrell Soss, Ashley Steele, Leslie Steele, Scott Steele, Stephen Sutter
Out of the twenty names listed, only seven were/are in a position of employ. More than work associates, more than helpers, more than people fulfilling a role, these folks became members of my church family; most of them closer than causal “see you every Sunday morning” kind of friendships, which I believe is God’s gift to me. Some of the volunteer folks listed have become leaders on the team and have more than stepped up to the plate to keep the ship moving forward when I took ill. In particular, I think of Rob Fisher who, though he’s paid a salary, made himself available and crunched hard core when I went out unexpectedly. More than an inconvenience, my absence caused a series of challenges to surface and Rob led the way on showing “how it’s done” in covering for a leader who is unexpectedly absent. Much more to be written at another time. Thinking of Darrell Soss who’s been my close friend since my hire here and his “Get it done right” work ethic showed his attention to detail and his love for the craft and his love for doing God’s work in a way that he knew he could. Who has put up with grief and walked on through it, still with his head up and training his two little techs who would come in to help strike each Sunday after SML. Ask him sometime how long he’s been helping and serving on the Media Tech team…you be surprised at the double digit figure.
Also, Scott Steele and the Steele family who have gone up to bat, tirelessly it would appear ever since they began ministering to the FOP body by sharing their gifts, talents and spirit and leading within the team structure to help build a cohesive body of techs.
I think of Madoli and Carl who have both been such since pillars of support and care for me and for the crew as a whole. On campus and off, they have been so supportive, kind, loving, caring and giving of themselves and their time to be a support to me and my family as well as Rob and the team as a whole.
Erin and Tyler who have come in on their weekends off to make sure that the lighting in the Worship Center was working as well as it could; even re-aiming fixtures to help with that morning’s service needs, even though they weren’t scheduled to work that morning. My gosh. I could write more and more about each person listed and how they have impacted the team and how they have served but I’ll save that very long entry for another day. Suffice it to say that in my days as Director of the Media tech team, I have been incomparably blessed here at FOP by these folks listed above; pretty much welcomed into their families and lives and have had the opportunity to receive a blessing from God through my working along side them.

Where to go from there? Hmmmm…
Well, I awoke this morning around 5:00 and decided to go ahead and get up instead of going back to sleep, which I wasn’t convinced I’d be able to succeed in anyway.
I was thinking about my health, my doctors, my issues of this whole disability thing and have come up with a few things of note, anyway, to me they are a few things of note.
One of them is, in Kaiser, you are sent from one department to the next to be looked at, and assessed you’d think, in a unbiased manner, but it is clear that the doctors read your file before you come in so they can save some time in knowing what’s going on with you, which should also be a good and understandable thing. But in my case, I have a doc (Dr. Gibbs) who in December wrote in my chart that he doesn’t believe I really have HKPP and also that he is suspicious of the accuracy of and in my history/childhood. The effects of his input in my chart have pretty frustrating results. Any doctor I see now, looks at my chart, reads Gibb’s notes and assessment and then is suspicious that I’m more a psych case than truly suffering from something physical. I feel pretty strongly that I am battling a “system flaw” rather than some doctor who is out to get me, so to speak. Dr. Gibbs doesn’t know me from anyone, but his dictation includes some assumptions which are incorrect, some notions about HKPP which are incorrect and some assumed stats on HKPP which are incorrect as well. When you add those inaccuracies up and then add in his wording such as “it would be unusual for some diagnosis other than hyperaldosteronism…” and “The patient’s story of having a number of emergency room visits in which no one ever mentioned hypokalemia suggests that he didn’t have hypokalemic episodes when he was younger.” And ‘I would doubt that his potassium was never checked when he had come in…” and “it is also a little odd that he would come in with numbness in his hands and mouth and couldn’t see with these episodes.” He concedes in the same dictation that my “documented” episodes from this past year show my potassium in the low 3’s (anything under 3.5 is considered low potassium and 11 of 22 labs show low potassium from that timeframe with 19 of 22 being in the mid 3’s), however he then states that HKPP patients “generally” have levels under 3 when they are experiencing weakness. That statement is nearly entirely wrong and further insinuates/hints that I am possibly fabricating my issues. Since I’m complaining on topic, I’ll continue. He correctly states that I tested negative for the gene testing but includes in the same sentence “…which excludes that consideration for three-fourths of patients.” Are you sensing the origin of my concerns here and my anger over the global inaccuracies? I’ll mellow out in a bit…’If he were to have HKPP, then it would be odd that he is showing the blood pressure and aldosterone level changes of someone with hyperaldosteronism so we would have to be giving him multiple diagnoses.” Well, we wouldn’t want to have more than one thing wrong with him, now would we? I mean, that would mean we missed his diagnosis for several years now and never figured it out as a hereditary disease.
Ok, I’m back now…so, as you read the above quoted statements, can you see how a doctor, new to the search, would read those writings and assume, with some collegial support within the Kaiser camaraderie, that Gibbs was correct in his assessments and statements and essentially pick up where Gibbs left off? Gibbs clearly questioned my accuracy of historical facts in the least and in the most, he asserts that my “story” (his word, not mine) is a fabrication of some form. I have NO CLUE as to why someone I don’t know, and have no history with, and theoretically is to be biased towards the patient’s well being, would assume such a position as Dr. Gibbs has taken. Above the dictation and further odd and unethical (at least as far as I am concerned) is that Dr. Gibbs, or someone saying he is Dr. Gibbs, called Dr. Ralph at UCSF Med Center and told them that he is my neurologist and that I am not a candidate for the study on HKPP because I don’t have HKPP, but that he (Dr. Gibbs) does have a patient who would fit the criteria for the study. Even as I read this and type it, it is still amazing to me. And infuriating as well.
I’d like to add a few more facts regarding HKPP I’ve learned in the last few days:
- How Many HKPP Patients have had confirming second opinions?
- 3 out of 17 patients polled received a second opinion/confirming diagnosis

- What ages were Patients diagnosed:
- Out of 17 HKPP patients:
- 2 were diagnosed under the age of 10
- 10 were diagnosed from ages 11 through 20
- 2 were diagnosed from ages 21 through 30
- 1 was diagnosed from ages 31 through 40
- 3 were diagnosed from ages 41 through 50
- No patient I polled was diagnosed above 50

It has been asserted in Kaiser, that in order to be considered legitimately diagnosed with a disease or condition, that you must have a confirming second opinion. When I was told this, I was surprised but thought that I know little of medical things, so I’ll believe those within the field who have .MD following their name. Obviously, what I have learned is that a second opinion is NOT necessary and above that, just getting an actual DIAGNOSIS is nearly impossible within Kaiser, or at least in my case, it’s pretty damn difficult to KEEP one. Also, Dr. Gibbs had errantly suggested in our consult with him that HKPP patients are “normally” diagnosed in their childhood…um…look at the stats from the pole I took of random HKPP sufferers and you’ll see that the teenage years are the most common in this random group of pollsters and that the next age bracket with the most diagnoses is in their forties. Only two were diagnosed under the age of 10. Get your fricken facts straight before you condemn someone’s’ medical chart with your assumptions.
Do you suppose I’m still angry about this…? Yep.

Oh yea, I think I may have included this in another entry, but Dr. Gibbs had also suggested that Kaiser could induce another HKPP attack while I would be under observation with tubes and wires and then they would “bring you back out of it and get you balanced back out.” I leaned against death’s closed door in November and though it opened, I was saved from falling though. No one in their right mind would choose to go and knock on that door again, voluntarily if they are not already near it or carrying some kind of terminal sentence…at least not in my opinion. Hope that makes sense. In Dr. Gibb’s notes he doesn’t state that I crashed or anything like that; he states that do that test would *require* him going to the hospital, coming off the spirinolactone and then seeing how he does. As if it’s no big deal and that I’m opposed to the test unless it is absolutely necessary. As he writes it, he portrays me as simply unwilling and suspect. Amazing.

Okay, okay, I’ll move along. Just keep in mind that this is one of the only outlets I have for these thoughts and feelings and such and though I wouldn’t choose to share them with such a broad audience as this (and the web in general), it is freeing to get the mental baggage out of the head for a while and view it, realize it, understand it and then reassume or reinterpret it into my life. Most all of this is of no real interest to anyone anyway but me, and that’s perfectly fine. I do hope it is never used in some malicious way against me or in some demeaning way in viewing such a person with such struggles and situations, i.e. pathetic. I’m not caring much what others think of or about me now-a-days, but it does matter in the world of medicine and in my profession and professional life. If I determine that these writings could be detrimental to me in some fashion or from, then they’ll disappear from view. I do hope that does not become the case.
However, it may become the case now that I think about it, as we are considering the issues with Kaiser and such. I must do what is right. We shall see.

Jumping around
Ok, I’m not jumping around, but my thoughts are, so let’s proceed, shall we?
My aunt just called and suggested that we go to Sutter Med center and ask for and receive a copy of my labs and ER notes from my visit there in may, I believe, when I was taken via ambulance to Sutter because Kaiser was full and not accepting any more patients. She’s absolutely right in her suggestion and we need to make a call to them can get the process rolling as well.

My sister’s suggestion regarding the issues with my sight and eyes is pretty darn logical; the medicine I am taking could easily have that side effect, especially now with the number of different meds I’m taking.

I’m going to try reducing the pain meds to see if the pain is still there or not because it is very difficult to know if the meds you take globally mask it. I can obviously get back on them if I realize an increase in the pain, but I’d like to know if things have changed or not. I’d rather not take pain medicine at all.

CC’s mom is more or less, back to her same self and the stress of normal every day to day living has returned with the routine except that I am giving her her meds and not waiting for CC to come home to do it as well as some other care giving that makes life easier on CC so the full weight is not on her alone. This has to change, though. We cannot continue on like this. There will have to be conversations within the family to work out a solution that relieves us of the 3+ year long job of caring 24x7 for her mom. She doesn’t want to go anywhere, she doesn’t want to go be with anyone, she doesn’t want to do much of anything except stay in her room, watch her TV, have her coffees brought to her, have her newspapers brought to her weekly and be personally, physically cared for by CC. That’s it pretty much it in a sentence or two. It has to change.

I believe it is time to find another vehicle; my truck will cost far more to repair than it is worth on a good day. I need to replace the alternator and then put it up for sale for probably $1,200.00. It’ll run and behave but it need some fixes to bring it to *good* shape and we don’t and won’t have that kind of money to put on a vehicle. We are going to be looking for a suburban or sorts because we need a vehicle that can tow the boat and carry at least 5 passengers. I need to be able to get in and out of it easily which excludes small and medium sized cars that I would have to step down into.
*sigh*

Much going on.

Lastly, we are going to go ahead and pursue the appointment with Dr. Ralph with or without Kaiser’s referral, so it will cost us $400.00 out of our pockets, but at least we can begin to move forward in this whirlpool and maybe even, eventually, make it to the side of the pool and get out of it. God willing we will, but we have to keep going whether we succeed or not.

Peace