Thursday, April 2, 2009

San Francisco - The Boring Part - Day 1

If you're going to San Francisco,
Be sure to wear some flowers in your hair,
If you're going to San Francisco,
Be sure to pack a change of underwear.
(Oh, and your laptop is a nice touch, too.)

I'm pretty sure that's not what the song says but it SHOULD. Maybe then I would have thought of that for those "just-in-case-you-get-stuck-there" moments.

If you read my last posting from what seems like six weeks ago (but was really only Tuesday morning), you know I went to UCSF for a doctor's appointment and some tests. This was supposed to be straightforward. Nothing in my life is EVER straightforward so why, after all these years of experience, do I still act like a "daft and dewy-eyed dope?" (Thank you Rogers & Hammerstein. What's up with me and songs today?)

The appointment was good, as doctors go.

If you've been hanging out with me for very long you know how thrilled I am by most doctors. There are a few fabulous ones but the bad ones are just SO bad, they take up all the air (and print) space. So, it's time to set that straight. I GOT A REALLY NICE DOCTOR! She was informative, personable, investigative, warm, conversational, and thorough. I even brought the kids in to meet her. She laughed and smiled and acted like a human being. Be still my beating heart.

For those of you who may not know, I battle several health issues for which there have been no clear-cut answer. It has attacked different nerves in my body and is degenerative (not MS, not ALS, not AIDS, not HIV - yes, they have checked me for all these and then some - good times), has had a blood component called "porphyria," which has also caused my liver and spleen to get very sick periodically, leaves me with diminished physical stamina and quite fatigued at times, and has affected my immunity. And just for the record? I HATE TALKING ABOUT HEALTH ISSUES. About myself.

That was one of the reasons I started the blog. I could update here and then not have to talk about it when I see my friends. Get on to more interesting things, as it were. But every once-in-awhile I have to face it, see doctors, or (blech) TALK about it. It is the human condition.

The reality is we will all get sick from time-to-time and sometimes we get REALLY sick. Most of us live with a pain or five here and there. Some of us live with chronic conditions for which there is no cure but they wear away at you. Some will be taken out by wretched things. Cheery, I know. Sorry. But it is reality. I just choose to focus on the OTHER things in life which are also reality. Humor, joy, kids, friends, pets, nature, compassion, God's grace. The GOOD stuff.

Which puts me in mind of a little friend I had when I lived in the Projects for a while, as a child. Her name was Lanie and we were near constant companions after school and on weekends. She would go to church with us sometimes and I, in my theological eight-year-old wisdom, thought she needed to hear about the devil and hell as we rode along in the backseat one day.

"OH!" she shouted, covering her ears. "Don't tell me about that bad part! I just wanna hear the good stuff!"

That pretty much sums up my attitude on discussing my health. I like to focus on the "good stuff." Because if I have to give that up AND have my health affected, then it HAS cost me dearly and I would spiral into a depression. There is just so much good and beautiful and joyous in the world. And it will be joyous and good the day I drop dead. (Wait.....I'm not sure that came out just right but I think you know what I mean......!)

When it gets maddening for me is when I am assigned an attitudinal do-little-know-less-uncaring-I-am-the-god-of-the-universe doctor. I won't describe him because you've all met him. I don't know anyone who hasn't come into contact with at least one of these self-appointed rulers of the cosmos. They're such one-trick ponies they don't merit much more explanation.

But sometimes, some blessed, wonderful times, you get a doctor who loves what they do and genuinely wants to help people. I think Dr. Chi, my UCSF Immunologist, is that kind of doctor. So......Yay!

She said she would be doing HOMEwork and research (really? For me?) because she has never seen my particular blood result history and wants to get to the bottom of it. Then she ordered more labs. Labs to be run at her first-rate medical center, UCSF, where I've had labs run before. But since then the insurance has changed the rules and they want you to have labs done at their cut-rate facilities, even if they're very specific labs and take specialty equipment and highly skilled techs. Unless the doctor says "No, it must be done here at the hospital." And by the time I discovered that, the appointment was over. Dr. Chi was the one who told me to check with the insurance company before having the tests done.

And the office staff was less than helpful. One sweet little gal cooly informed me that they wouldn't deal with insurance issues and it was my problem if, "I didn't want to be bothered to go have labs elsewhere and come back and forth." I informed her I lived 150 miles away and it wasn't a matter of not wanting to be "bothered." I was SO proud of myself. I didn't reach across the desk and whack her. Because that's what I wanted to do.

Instead, I spoke kindly and managed to at least get her cooperation in asking someone else. And then I prayed. And then I went to work. I took on Satan - also known as the HMO. Wow. Lanie would have REALLY freaked out if I had told her the truth about THEM.

I spent the next two hours on my cell phone lost in the maze of computer prompts. Each time I got a live body I was put on hold and disconnected or sent back to the introductory prompt to start all over again. When I finally got an answer, I was told they had no information for California and I had been routed to Arizona information. How far can your eyeballs stick out of your head before they actually fall out and roll down your chest do you think?

Next was our local group. They were the ones who informed me special approval was needed and should have been requested beforehand. But it was a possibility. One caveat: it would have to be requested to be processed STAT. And who would have to do that? Our kindly office staff. Yippee. Just great. That'll probably happen when Hell freezes over.

May I say thank you to all of you who were praying for me this day? Our little stone in a sling actually brought down Goliath. And caused the following weather phenomenon:

I won't go into death-defying details but five office people later and a "chance" meeting with the doctor in the hallway (to ask if she would write a request saying she wanted the test done at UCSF and she MORE than happily said she absolutely did, and did it immediately), the insurance rep who had been less than friendly, took it upon herself to WALK MY PAPERS to the approval dept., got them approved before we hung up the phone, and worked out the rest with the office. And this after another rep with the same insurance company had told the office it would be DAYS before it could be approved.

I saw locked doors opened right before my very eyes. The eyes that were laying on my chest.

And I got validation.

A lovely woman, Tanika, who usually worked in a different department, approached me as I sat in the hallway weaving together office staff, insurance companies, labs, and doctors into something I could actually use.

"I just witnessed what you went through with the office here. And I heard what was said to you by the girl who accused you of not "wanting to be bothered." Here's the card of the department manager. Please talk to her. They can't fix what they don't know about. No one should go through what you just went through. That was completely wrong."

Would she have been on my side if I had lost it with that person? Doubtful. Self-control is a powerful tool. I'm usually on the frontlines of battle ready to take on the world. It is so nurturing when someone else leads the charge. And not something that happens to me very often.

With approval verification numbers and blood test orders in hand, I headed for the lab downstairs.

An older, sweet little Chinese woman was my lab tech. She sat me down and poured over the requested tests. She pulled out eleven vials. And then she stopped and said, "Oh. One of these tests must be performed before twelve noon and it's now 4:00pm. It has to be sent to the Mayo Clinic. You'll have to come back tomorrow."

Now, for some people this might have been bad news. But for three hooligans set loose on the city of San Francisco, this was YAHOO! news. We had been finagling, trying to think up an excuse for staying one more day and failing. We don't really have the money to just spontaneously vacation. Especially in a city like San Francisco where the locals start each day by opening up the window, wadding up a $50 bill, and throwing it out. EVERYthing is expensive. Parking for the day can cost $30-$40. Thinking about parking is an automatic ten bucks.

So when we go, it's usually staying with a friend (who has her dear sister with her right now while said friend is facing her own health battles), or it's an up-and-back in one day. But what could we do? Budget or not, I had to come back the next day. This also meant our few hour trip to the museum would now have to be delayed until the next day when we could take our time and CLOSE THE PLACE DOWN! After the lab work, of course. We tried to be appropriately somber about this financial hit. We failed. We wouldn't get any richer sitting around wringing our hands so we took our joie de vivre and thrust ourselves upon San Francisco. We don't believe in receiving blessings and then lamenting them. If this was where God saw fit to drop us off for the night, who were we to complain?

More about that tomorrow.

Copyright 2009


  1. Oh man, being type 1 diabetic for years, I totally hear ya about Dr.s. I HATE THEM! So, when I moved to Wenatchee a year ago, I had to set up an appointment with a specialist. Due to various circumstances, and her crazy packed schedule, most of which I could have worked around if I'd really wanted to, I managed to re-arrange each appointment for almost a year, until finally I couldn't avoid it, and had to go. God must have known I was at the very end of my Dr. rope, because imagine my surprise with she was the most understanding, nicest, kindest lady, who actually said positive things about what I'd been doing, and was not judgemental at all. Miracle of Miracles, I tell ya what.

    I'm glad you got a great Dr! I'll pray for your health. And, so glad you got to "enjoy" an impromptu vacation.

    I have some pics up on my site, if you want to see. :-) I'm gonna post about our visit in the next couple days. :-)

  2. Wowey-wow, wow, wow. WHAT a trip. Am so glad you got to have your blood drawn! Whoo-hoo! ...AND a night o the town... sort of.
    I could only growl right along as you described your insurance ordeal... I will not gone on, but only say, "I UNDERSTAND COMPLETELY" (Arrgghhhh!). And neat to hear a story where restraint paid off... you're right... the office woman garnering support for you- far & few between.
    Look forward to hearing "the rest of the story".
    Am glad you're home, though, and in your own bed.

  3. Can't wait to hear about the rest of the trip ... I love San Francisco! It's nice you could get in some fun time to counter the medical stuff. So glad you have a doctor you like! Makes all the difference in the world.

  4. I hardly know where to start! Yea for all blood draws needed before 12, when its already 4 IN SAN FRANCISCO? Or yea for Tanika and her wisdom and kindness? How about woo-hoo for Dr. Chi and meeting your kids which tells me she cares greatly?

    What a feast of wonderful things, despite the trials experienced around the them.

    Btw, Dr. John made you blog of the day and you should check your email as I sent you the scoop on it! Glad you are back and hopefully on the way to some answers!!

  5. Oh so that is why you have the gift of writing. Man, I will take my poor grammar and decent health and be happy. So sorry you have to deal with this. I'm sure you have heard it all by now. HUGS.

  6. "The eyes that were laying on my chest." Love it. I am glad that you didn't lose it...I might have, I have no patience. Congrats on the extra day in SF.

    Hopefully you will get the answers that you need.

  7. I knew my arthritis had been achy lately and now I know why,.."hell froze over".. and man it was cold and damp! I'm so glad it worked out for you and yes, I believe it is a very rare thing just like the freezing thingy... Hang in there and keep me posted, ok? Best of luck my friend!

  8. Well, would you lookee here...God answered prayer?!?!?!?!?! Hurrah! Go, God! Sorry about all the hassle with insurance...I hate HMOs! But I'm glad God carried you through... Can't tell you how many times I've fought with the insurance co. about paying for tests...remind me to tell you my miracle story about how God causes everything to work together for good...and insurance companies that don't want to pay for life-saving AND long term, money saving tests...Good stuff...Oh, BTW, on a lighter note, I'm dedicating this coming Saturday's post to JoJo...Are you curious? JoJo inspired me...and no, it isn't a post about dogs... You'll just have to wait and see..."I must be cruel in order to be kind," said Hamlet. Ah, you can throw me out now, with those horrible doctors if you like. I'll totally understand... Love you, sister! I'll keep praying! ~Janine XO

  9. Your singing to the choir sister. Glad that you got the necessary approval. I'm holding my breath, waiting to hear how it went at that lab.

  10. Looking forward to hearing about the rest of your trip. I love love love your positive, vibrant attitude!!! :)

  11. God must have been smiling on you!
    YAY ... More time to spend in San Francisco - it doesn't get much better than that!!

    I can't wait to hear "The Rest of the Story" as Paul Harvey used to say!

    Oh, and if you ever see that Tanika again, give her a kiss for me and tell her that someone half-way around the world, is amazed and touched by her kindness!

  12. Oh,Honey I was about in tears reading your update. And to think the Lord linked us via pioneer woman. I'm not the one sick but my husband is and I know all to well the magnitude of seeing specialists, watching him be deathly ill at times, having to literally carry him through the house to use the bathroom, get to bed, get to the sink, get to the table to eat, get get get. I am so sorry your having to all these issues. My hubby has PSC primary Sclerosing Cholangitis..rare liver disease that men can get / the woman's version is PBC. He was diagnosed over 2 years ago and we've had a roller coaster ride ever since...almost loosing him last summer. The Lord's been gracious in the family doctor we have that got him to just the right specialists an hours drive from us that have been tops in care. He's also provided for every single penny in costs ( no insurance ) we've paid very little out of pocket. My hubby had to go on medical disability - and will one day be put on the liver transplant list which we could seen being done soon...he's already an accepted candidate. But this I know in all this that the Lord is Gracious and Merciful and ever present. Lamantations 3: 22-24 became our verse to claim when he got diagnosed and has been it since.
    Take care, praying for you.

  13. So glad you got a doctor you like. That means so much to me, one that I can talk to and they don't talk over my head. I put my cancer behind me and have never looked back! The only way for me is steam ahead, full throttle!! I pray they give you the answers you are looking for, Miss Robynn! Thank you God for helping us thru difficult times!

  14. I am surprised you had any blood to give today after the "Mosquito Thanksgiving Feast" the other day, LOL

    I loved hearing how God was keeping you calm and taking care of you.

  15. I love you Mrs. Reilly! i can't wait to hear how everything turned out in the end. God really works in amazing ways, doesn't he? I heard rumor that you were sick. I'm so sorry if you are. I hope to see you soon. Square dance maybe??? :-)

    Kaylee bean

  16. Robynn,you go girl and way to go on having self-control today! The battle is the Lord's (when we give Him a chance). By the way, I'm preaching to myself! Take care and have a WONDERFUL time in San Fran!

  17. Wow - what a rollercoaster ride! Well done you for keeping your eyes hanging down on your chest and your cool at the same time!

    God surely blessed you yesterday!

  18. I'm glad to hear that you found a doctor that you like! I just switched OB clinics at nearly-33 weeks pregnant because of a "ruler of the cosmos" type.

    But I will never ever forget the one great doctor I had. Finding them is like winning the lottery!

    I hope everything goes well for you and that you enjoy SF :)

  19. Robynn, fabulous story, fabulous outcome. We are currently battling our own insurance company (United Health Care, are you listening to this) to pay a medical bill that shoulbe be a "no brainer": my husband had a health issue that the local (network) doctor wanted to fix in a major surgery with a 10 day hospitalization. UHC preapproved the surgery. Instead we flew to Mayo Clinic and had the problem cured in outpatient surgery lasting two hours. The difference in cost is about $50,000 less, yet UHC denies the claim because the Mayo is "out of network". Go figure.

  20. I just love reading your posts!! They lift my spirits and i love you for that!! :D I will definitely be praying for you! I don't like talking about health issues either! bleh! I have some that flair up every once in a while lol... its hard not to talk about it when the end result is a GIGANTIC black eye! lol ;) Have a lovely day!

  21. Boy do I understand your Dr problem, we have fought this battle with my husband for years, and years, and years. Even to the MAYO clinic for some more fighting. Then LAST month, we found the guy, who did the RIGHT blood tests and HOO-RAY we NOW KNOW what is wrong with Terry! And even if it is incurable it is treatable and we now KNOW! WE NOW CAN PROCEED!


  22. what a day!! I am frustrated for you with all that you had to go through with the insurance company. It truly is mind-boggling at the red tape you have to cut and the hoops you have to jump through. To find a nice doctor in the process is indeed a blessing. Definitely hold on to her! (And yes, I've gone to the not-so-nice doctor. He actually made me cry.) Well, it sounds like your day had a happy ending and I don't blame you for wanting to stay in San Francisco - it's a fabulous city! Can't wait to hear more...

  23. YOu have got to be kidding... You have patience and perseverance for sure. I am hoping for some thing good out of all if it. Get some rest! You are allowed to not blog...right? I am going to do your apron story next week and will give you a heads up too!

  24. Wow! Good news indeed. That's an incredible feeling to have a doc who cares! Thank God for (did you say) HER! I'm wondering the ratio of male to female docs you've had-any corelation? I'm glad you blog, that would be exhausting to tell to each friend individually, and your friends really want to know. Looking forward to hearing the results. love you friend

  25. I can't tell you how much this uplifted me today. I've been struggling with a mystery health problem for a couple of years now, and I know just what you mean about doctors, tests, more tests, etc. Your attitude is fabulous, and you really made me laugh.

  26. Being a nurse I can relate to all the confusion with labs , billing, medical lingo ect. Keep the faith maybe you hit on a great understanding doctor for a reason.Enjoy San Francisco.

  27. Well, I was supposed to be finally get showered after puttering around this a.m. ... but no, I started reading your blog! Wow, after our 3 day stint of stuff at UCSF, I can picture it all up there -- and I certainly don't envy you trying to get everything worked out. But, oh the joy when helpful people come out of the woodwork (God's hand at work!). Have a great day. May blessings abound!!

  28. "supposed to be finally get showered?!"

  29. You are my hero. That self control that you so admirably kept in check... your wisdom and your whole attitude. I shall carry that around with me now when I come up against something difficult. You make me laugh, and dammit, you make me cry!
    Hope that you have the most wonderful day in SF. Have spent some happy days there myself... lots of love. XX

  30. I LOVE, absolutely LOVE your positive outlook on things!
    I think I'd do the exact same thing!
    Enjoy SF while you're there, and tomorrow is another day! Hugs xxx

  31. And here I thought San Fran is to be visited :)

    I"m glad you got a good doctor. I don't like when doctors just treat me like a paycheck. I move on really fast from them.

    I love your outlook. All of us here have been sick awfully for the past few days and still I try everything to get the spirits lifted and it's amazing that prayer of thanks are right there on my lips. Thanks to God.

    Oh dear...that cartoon about the call is making me laugh to crying.

    These days to make a call you have to plan for it to be an event!

    I"m reading with awe at how God is working in all the details...and in you to help you to represent him even during that experience with that woman not giving the help and about not being 'bothered'

    Now I must go look up joie de vivre :)

    I"ll be praying for you. *hug*

  32. After reading all that you went through I feel glad that my chronic condition didn't come on till I was on medicare. I have two fabulous doctors. All the lab tests are done in the building of the Doctor requesting them. The lab people are ever so kind. The office people couldn't be more helpful.
    Boy am I blessed and didn't know it.

  33. I think your extra day in SF was God's little blessing for being an 'angel' with that rude receptionist when you felt otherwise. ;)