The Moment You've All Been Waiting For

More news about my urethra! The referral for the new specialist to go have that new special test which the super specialist could not do had not yet come through and the neurontin experiment was not working. Well....with the exception of it helping me sleep and make nice to people, and stopped the tremors in my hands. Sadly though, none of these were what the prescription was intended for. So, when I met with the gynecologist who is part of my Primary Care Manager system, and has to approve and submit referrals, I explained to him that I am done. I do not want to see any more doctors, there is nothing medically more that can be done about this situation, and the shot-in-the-dark medication did not help ~ not.even.one.bit. He said that decision was certainly mine to make and should I change my mind at some point, we can certainly revisit. I suggested that I should stop taking the medication (and not because I don't like it) and he agreed that would be wise. I told him my concerns about stopping it cold turkey with the way it had affected me and he said I could taper off however I felt comfortable. I am currently weaning from that and I am down to half of what I was taking. I already am crankier and more prone to irritation, and my hands have begun trembling again. Such is life.

So here is the bottom line. Science is exhausted. Man can do nothing. If healing comes ~ it will be the Great Physician who healed. And you will see me shouting that from the rooftops.

Confident Trust - HooHaws And TahTahs

This post is going to take the long jump WAY over the line of information that you may want to know about me, so you may want to reconsider and come back for a less personal post. The ultrasound results are in and if you just want to know those, you can scroll down to the big bold text toward the bottom.
You have been warned.

Yesterday was the big UroGyno appointment. My day started way earlier than I would like because the doctor's office is 3 hours away. On my way out the door, I saw THIS on the counter...



Rockin'! It's already a great day. I was really having stress about this appointment because I felt like we are really getting to the end of the road for options and doctors who could possibly solve this problem. Plus, I made the mistake of investigating the doctor's website where I read things like 'urodynamics' and 'robotic assisted gynecologic surgery' and 'cystoscopy' and all manner of torturous things. Praying and being still was the only thing keeping me from flying out of the car and hiding in Mexico.
We were able to find the office with little fuss and went straight up to get signed in. They had sent me the paperwork to fill out in the mail, so I had already done all that. And I had worked really hard to make sure that Dr. Urogyno had all my previous records and was hopeful that he had had time to read them prior to my visit. These are the things I had with me that brought me comfort...
Took my Chicas with me in the form of my chickie socks that were gifted to us at one of our retreats. You guys were even with me during the exam of neverending torture.

This is my most beautiful, quilted, Bible study bag - hand made specially for me. I will make a special post just to show you this bag, and even tell you where you can get one. It was so peaceful to just hold the handle and rub the beautiful stitches and know that each one was placed there in love for me. I rubbed the handle almost the whole way up there.



I also had the comfort of being accompanied by my husband who had returned from his efforts in Texas. Thank You Jesus. On the way up there he offered such a sacrifice to me that if this became too much, then I could tell him and we would stop pursuing it. That he loves me and we would work it out. I cannot tell you the relief I felt and the overwhelming feeling of someone being willing to sacrifice out of love for me. I didn't ever know that I would see my husband modeling God's love for me.

Finally, I had my Bible. Speaks for itself, does it not?


The nurse took me back to the exam room even before my appointment time. That happens like once in century. My husband came too. She said, you two can go ahead and sit in the chairs over there (bypassing the ominous stirrups). She told us that the doctor likes to talk a lot before he ever examines. We sat and waited and waited and finally the doctor came in - yes, 15 minutes AFTER my scheduled appointment time. Which I was a little irritated, but not a lot because I figured, you know, maybe he just hadn't had time to go through my records yet and so he was doing that now. I mean I guess I can't expect him to take my stuff home and read it over dinner. Sadly this time left to ourselves in the girlydoctor's office, caused us to ponder if doctors such as these subscribe to magazines such as vagina weekly. When he came in, he had an electronic notepad. Made all his notes on there. Conspicuously absent were my medical records. Hm. So, we talked for a while about what was going on with me. I said - oh, I made sure to have my records sent over. He said - oh, I don't have those. I raised my fists in the air and growled out loud. Here is the thing - not only do I not want to spend my office time rehashing all the junk that you can read - I CAN'T REMEMBER EVERYTHING. I NEED YOU TO LOOK AT MY RECORDS SO YOU CAN KNOW WHAT WAS ALREADY DONE FOR ME. So we talk some more, he gives his thoughts on what it could be - he's pretty sure at this point that it is Interstitial Cystitis, which I say, I believe me and all my very personal friends had ruled out. But he explained that it can be illusive in certain kinds of tests but there were some good ones that were pretty sure to identify it. Yes, well I don't know if those have been done because we do not have my records. He talks about the option of physical therapy, which just sent me into a tailspin of trying to imagine what on earth kind of physical therapy you would DO for the tip or your urethra.
So he says, okay - The blue one there goes on top, open to the front - the white one is for your lap; I am going to step out while you COMPLETELY undress because we are going to examine you from TOP to BOTTOM. Yes, I said from top to bottom. TahTah's to HooHaw and beyond. So, my husband and I have one of those retarded discussions. "Should I stay or should I go now? If I go there will be trouble. If I stay it will be double...." I am stressed, and my mind is going a hundred miles an hour and I can't possibly know what to do. My poor husband really doesn't want to stay, but doesn't want to be a jerk if I want him to stay. So I think, he really does not need to see what is going to happen to me. He'll just have to read about it. Haha. So we agree that he can go out and about and I will call him when I am finished.
The doctor comes back in and tells me all the things you girls already know - place your feet in the stirrups, and lay back. As he is doing the breast exam I tell him about the 'mass' that was found on my mammogram and he says, "Oh? I don't feel it. Don't feel a thing." Then looks at me and says, "It's nothing to worry about." So he finishes that and then on to my abdomen and pelvis. Poke poke poke (Do you know that that hurts? Geez.) He finishes that portion of the move to the south and then he moves to the end of the table and says ~ say it with me ladies ~ "Slide on down to the end of the table." WHO can 'slide on down'?? There is no graceful way to get to the end of the table. None. No not one. But, truly, at this point how lame is it that I am still caring about my dignity? Do I honestly think I have a shred of it left? By the way, I had had a discussion about this the prior evening with my Chicas, and as a result, I literally laughed out loud when he said that. Thanks girls. So, as previously discussed, over the last three years we (me and my personal friends,otherwise known as every doctor in the southeast) have determined that it is the TIP of my urethra that is the problem area. And as we also know, each new person that comes to the party has to determine that for themselves. He did the most thorough interior exam I have had to date.
Does it hurt here?
No.
Here?
No.
Here?
No.
Here?
No, just when you bother the tip on your way to "here".
Okay, here?
No.
Here?
No.
Here?
When is the last time you had intercourse? We tried yesterday. *Wishing that the table would just swallow me whole*
Hm. Does it hurt here?
Um, I can't tell if that hurts or if you are pulling on the tip.
Okay, here?
YES!!*My foot automatically responded by making contact with his nose, and my thumbs went in my mouth.* *Well, maybe that didn't EXACTLY happen.*
That IS the tip.
YOU THINK?*Some crying going on now. Trying so hard to be brave*
Here?
No.
Okay, yeah - it is definitely just that tip.
Thank you. It is nice to have confirmation of that. Again.
Now you are going to feel some pressure in your Anus.
HOW have I not completely dissolved from utter humiliation?
Okay good.
I want to rule out those std's that we talked about before and I can do that with swabs, so we'll do that now. Tell me if I am hurting you.
Okay *quiet tears* (That really hurt; my urethra AND my heart.)
I don't think you have either of those things, but at this point we need to be sure to be certain we have ruled out all possibilities.
After that was all done, he let me sit up so we could talk about what he thinks now that he has done an examination. He is less convinced that it is IC, but he wants to have certain tests done for that because, again, at this point we have to be sure that we are certain we have ruled out every possibility. HE, however, does not do those particular tests. Only a urologist can do those tests, and you may remember that my urologist moved his practice to Houston.
SO - guess what?? I get to go see YET another new doctor. Oh but the exciting news does not stop there. No. There is more. I have to wait until Dr. Urogyno (who can't do some urology stuff) tells my primary care manager that I need to go to a urologist and then wait for HIM to request the referral from Tricare. Hopefully without requiring me to make an actual appt and come back in to discuss the whole matter. And then wait for THEM to process it.
So where was I? Oh yes, our course of action. He tells me that I am not really a candidate for physical therapy because my muscles are all in great shape. Except, of course, for urethral massage. Mmhm. He thinks, that when I had my weekly sessions with my gynecologist for this lovely adventure, that we just didn't do it enough times for long enough. That it really could help to desensitize the area if given proper time and attention.
So, what I want you to do, S4J is to MASSAGE YOURSELF TWICE A DAY FOR FIVE MINUTES. EVERY DAY. AND KEEP TO IT. DON'T GIVE UP. You are the best person for the job. You are very in tune with your body, you know exactly where the problem is and you can just reach in ~ and I am not kidding here folks~ he actually made a motion at himself of 'reaching in' and wiggled his fingers to give me the general idea of what I would be doing.
Keep on taking the Neurontin - it's a great idea - take it long term. It will need time to take effect. And go get those tests. I am sorry, but there may be no answer to your problem. We may just have to do pain management. Has anyone suggested numbing creams or gels such as lidocaine?
Oh yes. Been there, done that. No worky. Not.Even.A.Little.Bit.
Okay ~ we will have the results of the std tests by Monday and we will call you. I will call Dr. S and request that referral. And you will do the things I told you and we will go from there. You can go ahead and get dressed and head out.
Thank you and goodbye.
Now I am weary and sore and sad and tired. I clean up. Get dressed and slowly walk out of the office cause walking is painful. Call my husband as I am heading down in the elevator and we make our way to the car. Slowly. Did I just have a baby?? Geez.
Hubby offers to take me shopping as we drive by Hobby Lobby. Had to say no. Had to say no to all shopping because I wouldn't be able to tolerate the walking. So hubby found us a big city place to eat lunch - The Macaroni Grill. Here is our table covering. (As always, you can click on the pic to enlarge)

We finished lunch and decided that we needed to get on home as the kids were riding the bus home to an empty house if we didn't show up. I was really done with the day and just wanted to get home and sleep it off. In my room. With the door closed. And no one else there.
Sorry. Not yet. On the way home, we got this....




For this...


Wow. That is a day. We got home, I went straight to my room and went to my bed. With the door closed. And no one else there.


I finally heard today back from the hospital about my ultrasound! The ultrasound shows that the mass is a cyst. That it has no blood supply of its own and the follow up needed is a mammogram in six months. Thank You, Lord for mercy.

I am most sad that I missed the opportunity to tell Dr. Urogyno that he has not met my God if he thinks there is no solution. I pray that the Holy Spirit takes over next time and gets the job done where I am lacking.

Again I say...

In peace I will both lie down and sleep, for You, Lord, alone make me dwell in safety and confident trust.
Psalm 4:8

Here I Am ~ Epic Post

"This will be a daily Hamper Scamper post."

HA!

How about ANY post AT ALL??
Just call me underachiever and let's all move on. Shall we? I have been doing fairly well keeping up with the chores, and my family has been good about helping too. Things are starting to feel more normal around the house and a lot has happened since I last posted.

*TMI warning*

My Dad came for a lovely visit and we all spent many days in heated and mostly good-natured battle at various card, board and Wii games. He took my son fishing and even caught some catfish. Thankfully the farm where they caught the fish did all the fish preparation and they brought home only the fillets. Then my Dad taught us how to cook and eat the fish. I tried a bite, decided that it tasted like this fish ate dirt and that was enough for me. This is a picture of my Dad from his visit. As you can see he is a camera hog. Really loves having his picture taken.

I managed to get to Worship Team and Choir rehearsals at FUMC(and my Dad went too!) and am back on track finally (at least for now) serving both services and loving it.

I had my girly appointment with the girl who would be my favorite doctor if she were, say, my podiatrist. Sadly, she is my specialty Gynecologist and so she therefore, by default, cannot be my favorite. She asked me if there was any change and I said no. She allowed me to tell her excitedly how through the telling to you all of my gynecological history I came upon the realization about the catheter installation possibly being related to my current ailment and she grinned at me and gave me that look that people give me when they see my zeal and are afraid if they don't make nice, a limb of mine might fly off or something. I am so excited and I say, "So....I think if we just cauterize the thing or something like that and get it over with, then I can go on my merry way ~ happily ever after." She became a little less shiny in my eyes when she replied, "I would like you to go see the specialist." He is a gynecologist with urological background (or something like that) we'll call him my urogyno just for fun. She says he'll probably want to take a look inside the bladder with a camera. *jumping off the highest point of the Grand Canyon in my imagination* That, my friends, is called a Cystoscopy. It is a nasty business; humiliating, embarrassing, disgusting, uncomfortable, humbling, and strangely fascinating ~ that you have to be awake and un-numbed for. I tried to defend my personal space by pointing out that my Urologist had already done this procedure and that I could personally vouch for the interior of my bladder being in tip-top, working condition. I saw it after all. On the TV. In.real.time. She said, "Yes, I know. But Dr. Urogyno will want to see for himself."
I know that a good doctor will want to see my history and read what all the other invaders doctors have tried, tested, poked, prodded and postulated and then will want to do these things for his/her own self. And it truly is my prayer that he is a competent doctor who will have the diagnosis AND the solution right there in his Urogyno brain. But secretly, in a little corner of my tender little heart, I want him to say, "I know from reading your file that you need to take this one little pill. One time. It will heal the tip of your crazy little Urethra. It will not make you gain weight. In fact, it will make you lose weight. All of the extra you have, but not one pound more. Losing that weight will cause your breasts to once again be perky, yet voluptuous, and not one bit saggy. And also, it will make it so you never have to have another well-woman exam again in your life. Cause after all, you have no cervix and no uterus."
But that's just me.
I asked her if she could please prescribe me something to help me sleep and she agreed. Also, she made me have the whole pelvic, breast exam. And as a parting gift gave me the order to schedule my first, baseline Mammogram. Oh the absolute rapture. Maybe I can get it the day before or the day after seeing Dr. Urogyno just so I can have a fun-packed week. Perhaps I will start some sort of count ~ how many strangers can touch parts of me that I tell all my children never to let strangers touch! Okay ~ maybe nobody would be interested in that. At least nobody I really want to associate with. She told me that she had called and tried to put in the referral but was told by TriCare that I have to go to my Primary Care Manager to get the referral approved. That usually means being 'seen' by a doctor, in other words ~ examined ~ so that they can say, "Yes indeed, she should go see the specialist for an exam." But God stepped in and provided mercy for me and I was able to get the referral approved through mere begging phone calls. Hallelujah! Perhaps this week I will get the letter and I can make my appointment. Did I mention that I have to drive 3 hours one way to go see Dr. Urogyno?

So, the renovations to the east wing are mostly done. What we're working on now is finish work. Last sanding, one more coat, trim and the like. I can start posting pictures for you now if you'd like ~ or you can wait until it is completely finished. You just let me know your preference. I am really loving the change I must say. When we completely complete the east wing renovations, we will begin on the west end of the house which includes the master bedroom. We are still trying to figure out if we can improve the bathrooms without actually adding on to the house. (We hate roofing! ~ to prove it, I'll show you a picture of my misery roofing this house....)


What else has been going on? The price of gas and plane tickets! Geez. GGG and I have decided that this year we will be road tripping to Chicas of Faith. It's about 1400 miles. I can't understand why everyone I discuss this with gets that 'oh geez! her limb is going to fly off' look. We have an unfair disadvantage as the worship leaders; we travel with our instruments. You have to pay for your luggage people. So, we automatically have TWO suitcases to pay for. GGG showed off in one of her recent posts about how she bought a new backpacker. The hater. However, nothing compares to your full-size, rich sounding, favorite guitar. Just nothing. We will be driving through some absolutely beautiful country in the midst of my favorite season. Plus, if we can actually pull it off without turning me into a complete lunatic(traveling beats me down) - we will get extra days of fellowship together. (I mean - the Cali girls all get to travel together, why shouldn't we?) And maybe, if she brings her backpacker too - we can rehearse in the car on the way to PA. I have already put in the request to my husband to trick out my little trailer to carry our luggage, and also to make improvements to my sound system to make my minivan bumpin'.

My brother is still very ill and still very much in need of your prayers for his salvation. He has been in the hospital for a week and says he nearly had to have his arm amputated due to an infection associated with his dialysis. He is lonely and frightened and lacks control over what is going on with him. He needs a Savior. As we all do.

I apologize to you that I have not only not been commenting on your posts, I have barely so much as lurked. I promise you that I do think of you daily. I am still going crazy, although as I said before, things are improving, and I really am doing the best I can. School starts again in a couple of weeks and we will be back into a regular routine. More progress. Praise the Lord.

Word Of The Day Wednesday

idiopathy(id-ee-OP-uh-thee) noun

A disease of unknown origin or one having no apparent cause.

Well, Judi - your urethra problem will have to be in the idiopathy category. Or, if it makes you feel better, we can call it Urethral Syndrome. Here's a pill.

Interestingly this word sort of sounds like a word that a patient made up to describe the medicine being practiced on them....