Maybe Dr. Hot is right

The day after my drive home I was miserable. It felt like someone was stabbing me with a hot poker and there was a screen under my skin under my ribs on the front and the back. It was hot to the touch and I could barely stand it.

It didn't take long for me to put two and two together. The drive home in a vehicle I'm not used to-when I was already feeling really bad-used up my stomach muscles. If driving drove me this pain and not food, then it may be a nerve/muscle problem and not SMA syndrome.

I feel a bit more concerned today because I don't want to have this sickly life forever. And I definitely don't want to start on a daily pain med routine. I made my appointment at the new PMR doctor here locally. If I'm not happy with them I'll be heading down 301 and back to the Mayo Clinic where the best PMR's probably are in this part of the country. And I will learn how to use the cruise control on my Honda.

301 is king

The best part of this experience was not the Mayo Clinic, but the ride down 301 between Ocala and Jacksonville. If I die tomorrow I'll be thinking about how lucky I was to have witnessed this beauty. On the way home, there were the yellowist flowers I'd ever seen speckling the green landscape. Some were like a water color of yellow and others were like spiny yellow daisies. They were yellow the week prior when I drove by, but this week they were peaking. Incredible. I want to live on 301. Wait a minute, my address is 301, oh my, this is meant to be.

On my way home I thought about how none of these doctor's can rule out SMA syndrome. Tests on the past on me have been very inaccurate. Could it be that the compression is more then the MRI showed? Let's see, yes, the past tests. First, we have the torn ACL in my knee. Turned out to be something bigger that required twice the recovery time. Then the "fibroid" on my uterus that would be easy to remove. It's like a balloon that you cut off and take out and wahlah. Well, the fibroid was embedded all over my uterus wall and I had endometreosis. The cutting into uterus wall and the dropping (never found out how 5 things on the right side weren't right for sometime and how a huge bruise got there) turned out to be longer healing and more money. Then the third surgery-the tests showed I had some cyst problems but not big deal. Even though my lower abdomen was getting bigger and bigger. And the pain was increasing every month. During the hysterectomy my doctor found my uterus was FULL of blood, endo, scar tissue, and cysts full of a BROWN substance. Yawn. Then the forth surgery did show four to five cysts that didn't go away. So I guess this test was accurate. The only one.

Now even though I'm Puker Girl and I'm Atrophy Girl. I have tons of pain in the SMA sydrome area that makes me disabled. My mobility gets bad, like a need a cane. I have a Catscan and MRI that both show I "may" have SMA syndrome, but three really smart doctor's say that they don't think I have it. All the other tests have shown nothing wrong.

Maybe I should just throw in the towel and buy a shack off 301. Go pet some cows. Write some books. The radio out there kept playing Dust In The Wind by Kansas, maybe it is a sign. On the side of the road in the country I saw a cage with garbage in it. Cool. Bears maybe? Racoons? Hay For Sale signs. A cluster of shirtless high school boys holding signs on their lower half, were very amusing as they were purposely pretended to be naked. A rusty old white truck was parked on the side of the road with a garage sale sign and tons of stuff laid out all over the ground. Six newer cars were parked and everyone was acting like it was a gold mine. It was so charming out on 301. What the heck is a boiled peanut anyways?

I drove my Honda instead of my truck and I wondered why my stomach was killing me all the way home. It sucked. I kept thinking maybe Dr. Hot was wrong. He did apologize about the test scheduling problems and was very nice. He said the hot areas that hurt could be from the muscle and nerve problems. But how could I have this pain so far above the surgical site? Confusing. I threw my back out once in my life and I'll never forget the pain involved, I couldn't sleep, comb my hair or wipe my---. Maybe it is from nerves after all. He referred me to a PMR-Physical Medicine Rehabilitation doctor and a pain clinic. Massage and pain meds? I'm not so sure about this but when the Mayo Clinic talks, I listen. I'll try it.

The Mayo Clinic came through

Dr. Hot says I most likely do not have SMA syndrome. Yippee! The MRI showed a little compression but not alot. He told me to see a physical medicine dr. A rehab dr. He thinks that I may have scar tissue/muscle/nerve problems that can be helped by therapy. And do see a pain doctor, but not just for pain meds. Thank goodness, because I hate pain meds. Dr. Hot also said I will keep in touch with him and see how things go-if he is right. I'm so happy I most likely don't have SMA syndrome. I head home tomorrow and hope I feel well enough to take tons of pictures and videos of beautiful Florida.

Back here at the Mayo

Flower fell apart and wasn't up for the trip. Puppy and I made it to the Mayo Clinic again. I felt really bad yesterday and today which made driving a drag and I didn't stop and take as many pictures as I wanted. Hoping I'll feel good on the way home. Very nervous to see Dr. Hot tomorrow after my MRI. I'm nervous because he may not find out what's wrong with me and also because I faxed him a letter complaining. I'm nervous because he may find something really bad. I keep thinking positive things and I believe that the Mayo Clinic is as good as I heard. We'll see. My friend gave me a rekie (spell?) massage and said I was "hot" on the sore spot on my back. She is the third massage person to say that. Last night I was so hot on the middle of my belly and on my back in the same spot. I took my temperature with a strip, my forehead was normal, but my hot spot was three lines higher. Maybe this information can help Dr. Hot figure this out.

It hurts right here.

Faxed letter to Dr. Hot

Over the weekend I felt like a fool, planning to drive back to a place that made so many mistakes. I kept hearing circus music. So, I decided to email Dr. Hot and tell him all of the details and why I'm unhappy. His nurse said I couldn't email him, but I can fax him. It's 2009 and I can't email him, I have to drive to a location and fax it. Sigh. At 1:00 pm I faxed him, from Office Depot. I put my email and phone number at the bottom and I hope to hear from him soon.

I really want this journey to end with me being fixed/cured and going on and on about how great the Mayo Clinic is.

Good old country fun!

Puppy, flower and I had a super magnificent drive home. Taking goofy pictures of puppy lifted my spirits. Especially the one of him on the tractor (you have to look close). This row of mailboxes was on the side of the highway and there wasn't a house in sight. Totally cool. The huge tub toy taking up the lane was awesome! The beautiful country drive was something very unexpected and I don't mind at all that I have to drive back through it. It just seems like a five day visit at the Mayo Clinic only got me one colon x-ray and that sucks. And why didn't they have soap in the bathroom afterwards? I mean I can see why because when you think your done, your not done, another gallon of white barium comes out. I finally sat there for about 10 minutes, and let me tell ya, very good decision. That bathroom is the bowel emptying capital of the hospital. If they can't keep that soap dispenser full then they need TWO soap dispensers. If they can't keep two full then they need THREE---Besides, most of patients in this place are old and how much do you want to bet that most of them didn't shower before they came here. I mean no disrespect, I understand, a night of bowel prep is brutal on anyone. Old, bowel prep, ten minutes of gut emptying, no soap. I can't think about this anymore. I kinda don't want to go back to the Mayo Clinic at all. My sister in law and a good friend urged me to get this MRI. I looked online and I am thrilled to report that there is no radiation used in an MRI. Yippee. Maybe I'll get a second opinion from a general surgeon while I'm there.

The doctor I trust here locally said a year ago that he recommends laproscopic surgery to find out what's going on. He suspected scar tissue problems. All of the tests for other things came back negative before the SMA catscan. Then I couldn't find a surgeon to do it because of infection rates and the SMA syndrome possibility. I went through Dr. I Don't Care, Dr. I Can't Help You, Dr. Can't Fit You In. Now I'm like maimed. My instincts are that I need them to look inside to find out why four inches above my belly button is trying to kill me. When I am in the most pain I can feel a pull that ends on the right side of my belly button where I had scar tissue after the last surgery. Either I do have that SMA thing or the scar tissue is trying to kill me. I don't know what the state of infection problems vs. my being sick over HALF OF THE TIME outcome should be. Talking to one other doctor while I'm there is a great idea. Hope one can fit me in. Besides, a surgeon would be the one to know the risks of not going in. Maybe in today's world, and from what I've seen of hospitals, I may be better off maimed to this degree. Definitely don't want to be worse. But I also don't want to die from something that could've been prevented, or okay, maybe not die, maybe end up in a nursing home sooner than expected. Lovely.

Wah, I need to finish editing my Surgery Girl book and get them assembled and get them out there for sale so I can make tons of money while my body slowly or quickly falls apart. I need maids, helpers, drivers, soup makers, foot rubbers, and security guards.

Tell me this didn't happen

I am livid. After fasting again-no food or water, I arrived first thing for my MRI. The nice lady last night said that the hold placed on my MRI was a mistake and this morning I would be on stand-by and they would fit me in somewhere. This morning a different lady said they couldn't do the MRI because there's a hold. This lady wasn't going to call anyone, I had to go back to Dr. Hot's office to reschedule because of the hold.

See why I picked this picture?

On my way up to his office I thought about how after the colon x-ray the x-ray girl said to drink plenty of water to get the barium out. For those of you who don't know, they "insert" a ton of barium up your but before the test. Most of it comes out afterwards but not all of it. All of this fasting and the fact that I haven't gone #2 since the test, is hurting my guts. It kind of feels like rocks are forming.

Okay, so at Dr. Hot's office at 6:45am there was one receptionist who was very nice and caring. She made phone calls, but this doctor who put it on hold didn't respond (surprise, surprise). She did find out that the test was put on hold probably because the red barium has to be out of my system or it will mess up the MRI. "I haven't gone to the bathroom yet, and all this fasting isn't helping me go". She apologized and cared, that is something. But I gotta say, this doesn't feel like the Mayo Clinic at all. How could they not call me and tell me my test was on hold? I'm staying at the Inn at the Mayo Clinic, they can leave me a message at anytime. Hell, they could've walked to my room in 5 min., it's connected to the hospital. How could this doctor then say it was a mistake, and then it turns out that I was scheduled for a test that I couldn't take? Nobody here knows what they are doing. This is so unreal I just can't believe it.

I'm going to take my belly full of barium balls and go back home to Clearwater.

AAHHHHHhhhhhhh!

How did my MRI go? After fasting and being on time to my 6 pm appointment, there was a huge mistake. A doctor I never heard of put my test on hold. The super nice receptionist lady text messaged this "doctor". Oopps, sorry, it was a mistake, the test shouldn't have been on hold. But by the time we got this news it was too late to test me today. And they are full tomorrow, so now I have to go there at 6:30am to be on stand by to see if they can fit me in.

Angry monkey wants sandwich-hold the MAYO.

I miss my big kitty

I miss my big kitty, poodle and porch lizard.

Today I drove to St. Augustine to have lunch. Very beautiful and lush. Wish I had felt better, the walking was too much for me. I did buy my husband a porcelain pipe from the 1700's. And I ate a delicious chicken crepe and boston lettuce salad-this is the only lettuce I buy and no one has ever served it to me before. Cool. It is soft and dainty and digests well.

After my fifth bowel prep experience I think that we should close all of the jails and open bowel prep centers. Problem solved.

This old white guy with a Jackson Mississippi license plate drove around St. Austine with anti Obama stickers on his car-NO OBAMA-Impeach OBAMA. I take it he drives around Mississippi with that car, how is it that he is still alive?

I know lots of people are upset about the healthcare thing, but, take it from Surgery Girl. There is nothing worse that being ill. Nothing. In this rich country we need to take care of everyone's health first. I have Blue Cross of FL, my ass is completely covered. I would be willing to trade some of my full coverage for someone else who has none and is not being treated at all. (I won't have to under Obama's plan) I fear that if anything happens to my husband I won't be able to pay for my insurance, and I know in 10 years it will be like 1500 a month and I won't be able to afford that anyway. This stresses me out.

Thanks to Blue Cross of FL for paying for all of my tests. My Blue Cross Buddah.

But it is nice to know that I can always move to France and they will take care of me-no shit.

glad that's over

Well, that colon x-ray was very unlady-like. Food, food and more food. MRI is tomorrow at 6:00pm-PM! I think the hotel maybe in cohoots with this place. Ah, hell what another $200 bucks? AHHH, I want to go home. Dr. Hot can fit me in friday.

Can't stop thinking about those baby billiegoats. I want one! I will stop on my way home and knock on the farmers/rancher(city girl here) and ask if I can play with them. Maybe I'll roll under the fence and see what happens.

princess poop

My new friend and flowers for my princess poop day. Had an easy scrambled egg breakfast and saw a early morning hooker. Besides the obvious lack of dentists and the scruffy angry beach, the people here in Jacksonville are super friendly and nice. My doctor is definitely hot and I think he is competent, we'll see.

What?

I just read my bowel prep instructions.

tests on wednesday

MRI and Colon X-ray. Guess I'll be staying in this lovely room for two more nights. Have to do a day of bowel prep before tests.

Waking up

What a nightmare I had last night, OMG. The night before seeing the Mayo Clinic doctor for something that could kill me I have a nightmare that almost killed me. Really want to get this over with. Please rule out SMA syndrome and find a quick fix so I can go back home! I have a video camera I will figure out how to use, you all must see rural Florida.

I made it!

Ahh, rural Florida, how beautiful and lush. Just before leaving Pinellas county a yellow butterfly hit my windshield-how truly aweful! But why do I care more about the butterfly then the other splattered bugs? Anyways, 25 bugs later I entered no man's land. Did you ever notice that all the anti-abortion billboards are in rural areas that need more people? If they moved those signs to any city, they would be paint balled by all of the people that live with too many people. Free roaming cows were everywhere, so why were 8 cattle egrets all following this one cow? He moved two feet, they all puffed up their wings and flew two feet. That cow must be really nice. The most amazing thing I saw was at mile marker 345 a woman in a white car thought she blew a tire (there was pieces of a tire on the expressway) so she stopped her car-in the middle of the FAST LANE-she got out and bent over in front of her car to check her tires. No flashers, no brake lights, I'm not kidding. Right when I was thinking "should I stop and help her" I ran over a flattened unidentifiable large animal. As you can guess I did not stop. Oh my, I'm so glad I made it here safely.

Leaving at 10:0am

Thank God, Buddah, L. Ron Hubbard and all witches and warlocks-I feel super today!

Driving my Toyota to the Mayo, have a pile of heavy metal CD's and of my two Jack Johnson's.

Feeling brave and so lucky that I have savings.

Off I go-bye!

I hope I don't have SMA syndrome

A CATSCAN said I may have it. SMA syndrome is some horribly rare thing that can be deadly and the surgery to fix it sounds serious. Two doctor's said I don't have it. I'm really sick like I have it. Hopefully it will be something easier like scar tissue or a thyroid problem. Or maybe they will open me up and pull out a beach towel that was left in me after my first surgery at the Dropper's Hospital. I leave tomorrow and am so nervous. Brave soldier, my husband keeps saying. WAh, I don't want to drive alone but I got my appointment moved up and my husband is in the middle of a big job. Anyone out there live close to the Mayo Clinic and wouldn't mind a house guest? $160 per night at the hotel next to the hospital, yikes, hope I'm not staying long.

Love to all---