Monday, December 15, 2008

I'm Going to Bermuda!!

Okay, I'm done.... Anybody want our snow?? It was beautiful at first, but now I'm FREEZING and feel like a human popcicle..... A ticket to Bermuda would be nice about now...Who's in??? LOL

HERE'S SOME MORE SNAPS FROM THIS MORNING. The girls tried to savor the snow because there's no telling how long it will last, but unfortunately for them, it's too icy & powdery now to make snowballs so all they could do is sling it at eachother, LOL,.. Courtney stayed inside & made pancakes,.. Britt & Ashley went outside to play, and then Brittney got it where it 'doesn't belong', and started jumping around trying to be free of it... Take a look at the pics, and you'll see what I mean. It lookd like she was bustin' out the moves at first,... then I quickly realized,.. she had snow down her pants, LOL! The pics say it all........ Have a look!

Sunday, December 14, 2008

Winter Wonderland

*BRRRR!!!* Baby, it's COLD outside!

We've got a few inches so far & it's still falling.... very pretty, but also very chilly. Scott ended up heading out earlier this evening to try to beat what he could of it. Once the top of the mustang was covered, we knew it probably wouldn't be a good idea for him to wait until morning when it will for sure be a sheet of ice out there. He did make it north safe & sound though. Meanwhile, my car quickly disappeared under the snowfall, LOL!

The girls were super excited and of course thoroughly enjoyed themselves....... then came in for hot cocoa in front of the fire & warm bubble baths, LOL! *wink*

Here's some snaps I grabbed tonight...

*Happy Holidays*



With Love, from Scott, Tahnee,
Courtney, Brittney & Ashley!

Disney's Christmas Holiday Parade





This is a Disney parade you can only see at Christmas time... I wish that our pictures had turned out better, but until I can upgrade my camera again, they'll have to do. It was a fantastic parade, and how excited we were to see Chip & Dale arrive in their little wind up car! Remember that little car?? Well, if you getting older like Scott & I are, and you grew up watching the old Disney cartoons, then you do. If you never saw them, or don't remember,.. even to all the young kiddies now, it was just too cute. All seven of the dwarves were there, too. I enjoy all the new Disney & Pixar characters, but the nostalgia of all the old, original characters adds that much more excitement for us! ;) We had a wonderful time, albeit COLD, it was worthwhile.

*Pixie Hollow*

One of Disney's newest attractions that opened recently is Pixie Hollow. Shrink down to fairy size as you walk through tall grasses & flowers,... along the way, find a friend or two of Tink's! We found Silvermist...







And the star of Pixie Hollow,.... *Tinker Bell*, of course! :)

It's a Small World Christmas



It's a Small World is all decked out for Christmas time! I have never seen it different before. It's looked the same for as long as I can remember. The first time I was at Disneyland, I was 9 years old, Ashley's current age. That was 25 years ago, and it still looked the same, LOL! But, for Christmas it gets an overhaul,.. decorations & music. It is a fun experience. I'm glad that we got to experience it in it's traditional manner, too, because we heard that there are plans to make some changes to the characters within Small World, to more Disney style characters, such as Lilo & Stitch in the hawaiin section and so forth. That will be cool, too, but I am glad to have gotten to see the traditional setting once more,... and decked out for Christmas. This was our first time experiencing Disneyland at Christmas time. :)

Pixar Play Parade @ Night

For those who still follow this blog, you may recall this parade from when Brittney & I went on our mother-daughter trip to Disneland in May of this year. The pictures from that trip turned out much better because the parade was during the day. It was neat to see it at night, too. My camera hasn't been functioning as well at night or in low light, and movement only adds to the problem. So, these pics didn't come out as well, but we still like them. ;)

Saturday, December 13, 2008

A Disneyland Christmas

What a neat experience! I'll share a couple of more slide shows tomorrow of Small World all decked out for Christmas and the Disney Christmas Parade, but before I head to bed, here's one more. This is most of the rest of the pics from our week at Disneyland for the Christmas holiday season..... Much love & Have a good night! ;)

Jingle Bells @ Jelly Belly!




Everybody knew how much President Ronald Reagan loved his jelly beans... Well, when I was in 1st grade, my class & I got to write him letters. In my letter, I asked him what his favorite flavor was. His favorite was licorice. Out of all the many flavors to choose from, and granted, there weren't nearly as many as there are today, but it was licorice. :)

Six Flags @ Christmas Time

As you know, we got back from our holiday vacation a week ago. And as always, I have pictures to share. :)

The following are from our eveing at Six Flags for their Annual Holiday in the Park Festival. We only spent a couple of hours and just the one evening because it was so cold. We got season passes for 2009 so we'll be enjoying the park a lot more next year. We enjoyed ourselves while we were there though, and look forward to returning again soon.

Bad Apples

There are some other things going on in my life right now, and have been, that I have been choosing not to post publicly on. Just know that there are things "behind the scenes" that need continued prayer for as well. Familial things outside of immediate..... my own personal. Another side of family that I just haven't been able to "let in". I try so hard to avoid conflicts and the people who contribute to them. I have been working to protect my children from all of that for the past 12 years...... ultimately, the wolf has come knocking at the door.

I have a responsibility to keep my family,.. my children safe. I am not at liberty to disclose all the information about this right now in order to help those who might follow this, to understand. You may contact me in private for that. Some people might say, "blood is blood", well, no, it's not..... we are all unique individuals in life and "blood" has absolutely nothing to do with character. You can be a good person or not....... we all have a choice. Our actions speak volumes about us, and I am not about to let certain history repeat itself.

I look at this situation, as this particular part of my family, being a bushel of shiny, green apples. But, even apples get worms and those worms can chew at the core........ they destroy the health of the fruit & it rots. Leave one bad apple, and it will slowly harm the rest. I can't have rotten apples in my life.

Friday, December 12, 2008

Busy Week

Well, we've had another busy week, but I actually made it through pretty easily so it's been a nice change of pace. I'm tired at this point, but still doing well.

I really think that the new supplements are helping so I'm still anxious to start the next ones and hopefully continue to see more & more improvements, although I am still concerned about how I will respond to the abx treatments for the Lyme. A lot of people get worse before they get better, and can herx similarly to going through chemotherapy, but you never know, I may do alright since I'm in good hands with a great naturopath. I really think that when you treat the whole body, you have a better chance at making a stronger recovery. There may not be a cure, but it is possible to beat it into remission and hold it there..... that's my goal anyway.

I go back to the LLMD on Monday morning so I'll have a better update after that.

My eye appointment went well. Everything is pretty much the same so the eye pains and whatnot are most likely due to a combination between my thyroid levels being so messed up and of course the Lyme. My Rx is still the same, at least for long distance so I don't need to get new glasses for that, although he did the exact same thing again, and dilated my eyes before checking my near vision so I have to go back in to recheck that. Leave it to those KP doctors........ *rolls eyes* My optic nerves look good so we're not worried about the high-risk glaucoma category I fall into. I'm still testing high for pressure, but otherwise seem fine in that area.

Ashley had her well-checkup. I guess they still call it that even though she's 9 years old, LOL. She measured in the 25th percentiles for both height & weight. So that's come up from being in only the 5th percentile the last time she was checked. It is believed that it has everything to do with her NF. Shorter stature is common. It's been harder for her because both of her sisters have always been in the 95th percentile. Both, are a good foot taller than she is. They have been growing like weeds. I just do my best to keep her self-esteen built up and remind her how very special she is. That she's just exactly the way God made her, and some of the most wonderful things come in smaller packages. *wink*

Tuesday, December 09, 2008

Are You Sure You're Ready for This Update??

Well, we made it back safe & sound from our holiday vacation, and what a ride it was!
It seemed that things were not meant to go well for our departure as thing after thing went haywire, but everything still turned out.

I had a last minute doctor appointment the day we were to leave, in order to get my pain medication so I could be comfortable for the trip. I didn't know how else I was going to pull it off in the shape I had been in for the last couple of months. Well, the appt. that should've only taken a half hour, ended up with me there for THREE hours.

First, when I got there I had to stand in line behind several people while the only two counters that were open dealth with uncooperative people. One chatted away on his cellphone and the other chose to fill out a survey right there after being ask to do it elsewhere. Neither would budge until they completed their tasks, and neither of those tasks had anything to do with being at the check-in counter. GRR! I finally made it up to the counter 20 minutes after I was supposed to check in. She calls back to see if they would still see me then tells me they would because she told them I had been waiting in lin for 5 minutes... I told her how long I had been in line, and she was like, "Oh."

Once I finally got into the exam room, I was asked if a graduate MD could come in for my initial evaluation, and I said okay. I've done this before, it takes only a few minutes, then you see your primary physician. That did not end up being the case. I got stuck with this woman the entire time, and we had argument after argument about my symptoms and what was causing them. She would insist it was this or that. Then moving on to the next thing, well everything is caused by that instead. Blah, blah, blah... She was convinced that all of my eye pain, headaches, ear pain, neck pain, back pain, etc. was due to muscle spasms. Then, she was convinced it was chronic sinus infection and that I probably had fluid in my ears. I told her my ears always look textbook perfect according to all of the other doctors who have checked. She didn't believe me, again acting like I was nuts, but when she looked and saw I was right, all I got was "Oh."

Then, she jumped tracks back to my thyroid. I told her I just had my levels checked the week before with the ND, and they were still high. I also told her that he felt I was no longer converting T4 into T3 and I should add in Cytomel along with my Synthroid. Cytomel is active T3. She had no idea what I meant! I also told her that the pharmacy wasn't going to cover my script for the T3 because it came from a physician outside of KP so instead of $10, it would cost me $100, unless my PCP would sign off on it. I was told "no". I was informed that they would not consider results from another doctor or another lab, only their own so I needed to have them done again there. I told her I would, but that I was leaving that day for 2 weeks, and wanted to try the Cytomel... that I was going to fill the script either way. She then got aggitated and told me she thought I needed to make a choice on seeing one doctor or the other, not both, then basically made me feel like she wanted to show me the door. But,.. I wasn't budging.

I told her about all of the neurological symptoms I've been having. The brain pressure, the electrical pulses, shocks, stabbing, tingling/numbness, hot spots, mis-speaking/spelling inversions, etc., and that I wanted a referral to a neurologist for an MRI. She told me that my thyroid & sinuses could cause ALL of those symptoms, and that the neurologist would not see me until we get those things all sorted out. I told her these things were happening even when my thyroid was within "normal limits" and I was on anti-allergens, and they are getting progressively worse, I've never had an MRI ever and want a baseline done at the very least. I wanted to slap this woman!

She also said that they would not consider referring me to a neurologist unless my symptoms became so debilitating that I was having trouble getting around & getting out of bed. My jaw hit the floor & I just looked at her, and then pointed to the chair in the corner. I asked her, "Haven't you been listening to me? Did you not see me hobble in here using that cane?? Did you not hear me say that I have been steadily declining especially in the last 2 months, and have been near bed ridden for the past month? How about the fact that I had to use a mobility scooter just to take my kids trick-or-treating, and am having to take it on this vacation just so I can go? How about that I now qualify for a handicap parking placard?? You don't think any of these things warrant being further evaluated??" I couldn't believe she was going to deny me the referral. She went out and consulted with my PCP, then came back, and indicated my PCP was concerned and would consider the referral. I was getting such a headache by this point!

This graduate MD still insisted my eyes are just a result of these other things, too, and don't need to waste time looking into other considerations, despite my telling her that I am also at high risk for Glaucoma due to the Grave's Disease, and that my pressure has been testing high so I according the the KP eye doc I am required to be closely monitored. I didn't bother telling her I already set up an appt. with my optomitrist, and certainly wasn't going to bring up the Lyme again yet, although they did bring up my titer was still in my lab orders,,, Funny, the nurse was also a lot nicer about it after I complained about her behavior to Member Services).

So anyway, she was fed up with me and was ready to leave, and I asked about my pain meds. She went and asked my PCP, who apparently is chapped with me (because she wouldn't come see me herself) for questioning them about everything (Um, what's that quote I'm so fond of? "Unanswered questions aren't nearly as dangerous as unquestioned answers", and I firmly believe that, too). She comes back and I tells me they already approved it the day before. I had to then remind her that, no, they only gave me a quantity of 10 which would only last a few days, not 2 weeks, and I was told if I came in, I would get a month's supply. I only ask for them if I'm going on a trip, and for the length of time I will be on the trip. So, my PCP finally comes and gives another script for another 20 Oxycodone. She says fill them both, despite my objection to TWO separate copays for ONE month's Rx. It was a losing battle. They still refused to sign off for my Cytomel.

Next, I went to the lab where I quickly found out that the orders were all wrong, and the technician had to try to get it straightened out with my PCP first. She refused to come out to speak with him personally, and made us wait a half hour for her call. After that, I still had to go to the pharmacy, and they flipped out over me getting hit with two copays for one month's script... no one could figure out what the H-E-Double-Hockey-Sticks my darn PCP was thinking with all the screw-ups. I already had a number of other scripts I had filled along with those, plus some the previous day as well. The pharmacy turned out to be another long story in and of itself so let's just say it got straightened out and I got my meds.... this is already a mile long and we haven't even gotten to the part where we actually left on the vacation yet!

By the time I left KP, I was still supposed to run the ND and get my order for the parking placard to take to DMV, but... there wasn't time. I had just enough time left to go fill my Cytomel at the other pharmacy, and get the dogs down to the boarding kennel before they closed for the day. I was exhausted & in so much pain I was fighting tears. I finally got back to the house and we set to loading up the Tahoe with the scooter & all of our luggage, and we hit the road.... just after 6:00 PM. Only 4 hours beyond our goal. *sigh*

We stopped to grab a latte at Starbucks, and then, heading down the highway while caught up in the whole convo of my crisis at the stinking doctor's office, Scott missed our turn for the freeway. Finding a spot to turn around, well, my coffee sprouted wings and flew from it's cradle across my lap, down my leg, and onto the floor, splashing everything within about a 2 foot diameter. Oh yes, this vacation was off to a GRAND start!

In all haste, I also had forgotten to take my pain pill that I had to fight to get, and the whole reason we were late in the first place.... Oh, but it gets better. A few hours later, we stopped at a rest stop specifically so I could get my pain pills, and low and behold..... they weren't there! Yuppers, it's the ONE single, solitary bag that didn't make it into the truck! It was still sitting at home! We had to decide whether to lose time & money driving all the way back home, or continue on and try to figure something else out. We decided to continue on, and see about having Scott's dad go to the house and then overnight them to us at the first hotel. Of course, we were forgetting that the following day was Thanksgiving and therefore it was a 4-day holiday weekend with no shipping available. This trip was looking better & better with every passing moment,.... and in case it isn't clear enough, that comment is LOADED with sarcasm. *sigh*

Around 3:30 AM, about 30 minutes outside of Vallejo (Our initial destination, but not the primary), we were getting very sleepy. And then, we saw emergency lights up ahead that spread across the interstate. No doubt, someone had fallen asleep at the wheel. The only thying left was the lower framework of their car. The rest had completely sheared away in it's tumbling. Bodies lay covered with blankets on the ground, and I....... lost my composure completely. All I could do was cry & pray for them. (I remember on our trip a couple of years ago when we took Amtrak, a man decided to commit suicide by laying across the railroad tracks,.. and it happened to be the train we were on that killed him. I remember feeling a *bump*, but we didn't learn what it had been from until a couple of weeks later...) We finally got to our hotel just after 4:00 AM, and by 5:00 AM we were unloaded, settled into our room, and nestled in the beds falling near instantly unconscious.

Thanksgiving morning, we had to set in on figuring out what in the world we were going to do without my meds, how to get them, and so forth. Scott's dad drove to our house, but couldn't get in. He didn't have the right key. Scott was sure he had given it to him, along with others for 'just in case', but he tried them all, and none worked. I was beginning to go into a state of panic..... I just spent the week prior plus 3 hours and $200 the day before making sure I had all of them. Some of my meds, if I don't take them then within a few days my body literally begins shutting down on me, and I did not want to end up in an ER while on vacation. We were supposed to be going to dinner with family in Fairfield, but ended up canceling in order to figure out what to do. I was in tears so we arranged to go visit later that evening instead.

It was shortly after that, I calmed down and I rememered that my new LLMD (ND) had given me his cell phone number so I could reach him with any concerns while I was away. I hated to call him on Thanksgiving, and honestly didn't think he would answer. I was ready to get his voicemail and leave him a message to please call me back, but he answered immediately! He was wonderful... He called me in 2 weeks worth of my absolute essentials to the local Walgreens to get me through the trip until I could get back home. He couldn't do the Oxycodone, obviously, so he gave me a script for 10mg of Vicodin every 6 hours. Vicodin normally has never worked well for me, but now I think it was the dosing... it was always 5mg so this was twice that, and it worked very well for me! It actually worked better because it was strong enough, plus it's slow releasing so I kept feeling like I got these 'bubbles' of relief every little bit. After getting the scripts filled (PRAISE THE LORD FOR THAT!!), we went and ate, then back to the room for a much needed nap before heading over to visit family that evening. The visit was WONDERFUL.

The next day, was Scott's mom's birthday so we thought of her all the more. She would have turned 60 years old. Our trip held sentimental value because she had said shortly before she died a year ago that she wanted us to experience Disney at Christmas. We've gone before, but never at Christmas. So, we had decided to do it this year, in her honor. That's why we chose to leave around her birthday & come back the day she passed. It helped ease the pain of that week, and gave us a happier distraction. One she wanted us to have.

We headed over to Six Flags Discovery Kingdom to spend the day, but found that the holiday hours are from 4PM-10PM. Nowhere had it said this, in fact when we inquired previously, we had been told normal hours opening at 10AM. So, what to do all day now?? We went shopping, and hung out. Northern California is COLD in December... especially in the evening. We ended up only staying for a few hours. Got pics with Frosty, and other winter characters throughout the park, watched the cute sea lion Christmas Caper show, and played some Midway games. Daddy won Ashley a giant cheetah so she was tickled pink.

In one area the crowds got pretty heavy, but were moving along in each direction. It just required a little patience that unfortunately some people do not seem to posess,.... that and common sense. One family decided to push past people, heading the opposite direction that we were. I was on the scooter, of course, and so I suppose I was an easy target for pushing past because the dad & son both did this with no conscience about bumping into me as they crammed by. I stopped the scooter due to this, and worried I might run over the son's foot from him not paying attention, but then once I started to go again, the mom decided to shove past, too. She squeezed past the people in front of her and shoved her way in between, placing her foot right in front of my back tire. And you guessed it, I ran over her foot! This was not my fault in any sense of the word, SHE put her foot there by trying to push past other people.... yet she had the nerve to turn around and yell at me for running over her foot!! Honestly, I had no desire for confrontation with anyone so I just played the 'selective hearing' card and kept right on going. Hmm, does that count as a hit 'n run?? LOL Scott, on the other hand, turned around and informed the woman that she was the idot for placing her foot in front of a moving tire, and perhaps she was the one with the handicap! Okay, so it wasn't quite like that, it was more of a "What do you expect, ya numbskull??" *sigh* Will the fun vacation please step forward??

The following day, we met with collegues for business in the area, and then that evening we went to the Jelly Belly Factory for their Christmas celebration & tree lighting event.... FUN!! What a neat experience that was. They handed out free hot chocolate, cider & cookies, we sang Christmas Carols, and heard from the Mayor of Fairfield, the President of Jelly Belly & Sant Claus. Then, they lit up the tree! *Oooh-Aaah* They had a parade, a band, a bubble magician that did the most amazing things with bubbles..... and we went on the tour of the factory. We had such a wonderful time.

We, of course got our various "Jelly Belly" souveniers & candies, and pictures, etc., and then on the way out, we checked out their 'case sale', and picked up a couple of boxes of their chocolate/orange sticks. It wasn't until the following evening when had traveled on down to Anaheim, that Scott opened the boxes to check them out anf finding that one was fine but the other........ not only was it not what it said was in the box (turned out to be almonds), but it was also covered in not just fuzzy but FURRY green mold!! *ACK*

The drive from Vallejo to Anaheim should've only taken 7-8 hours, but due to fog, it took us about THIRTEEN hours. It was so thick you couldn't see the next car in front of you and CHP was providing group escorts up & down I-5.... I have never seen such a thing. Then, one of the stops we took to refill on gas and use the restrooms, we promptly pulled right back out of because it seemed everyone else had decided to do the very same thing. There were lines & lines of vehicles for gas, and there were THREE tour buses with tourists from Japan all in line for the bathrooms. Both men & womens bathrooms had lines with I'd guess about 50 or so in line for the women's, and about 30 in line for the men's, and still other restrooms had long lines forming there as well, and we were not about to stand in line waiting for the bathroom for an hour! We hopped back in the truck and continued south.... next rest area was closed... finally hit a stop, and took it. This one still had waiting lines, but not nearly as tragic, LOL..... but we still waited about 15-20 minutes for the bathroom. When in the world was our luck going to change?? All we could do was keep hoping & praying for improvement, and thinking, "What a story we have to tell when we get back!".

We spent the next few hours in bumper to bumper traffic. At one point, it took us about 45 minutes to crawl a mere 9 miles!! The drive was almost double the time it should have taken, and so we were completely exhausted. We stayed where we've stayed a couple of times before, and it was previously good. This time, the room was small & crowded (their version of a handi-cap room is to use up the space in the room by making only the bathroom large & open), the floor was yucky, the water tasted like chlorine, and the mattresses were hard like boards. There were no extra blankets or pillows, we had to ask for everything.... it was disappointing, BUT we were determined to have a good time despite everything seemingly falling against us. I honestly kept waiting for some major disaster to happen because it just seemed like we were not supposed to be there, LOL...

The next 5 days were spent as Disneyland & the Disney California Adventure theme parks, we had great fun! It wasn't crowded by any means so we got to enjoy all of our favorite rides over & over again. The scooter was a huge blessing. I could not have made this trip this time without it. On most rides, we had to go in through the exits, which is the wheelchair accessible side, and so one perk to my bruised pride in having to use the thing, it did skip some of the longer lines for us, although there weren't many that got too very long anyway. The girls got brave and tried many of the rides that they have previously vowed they would never do, LOL,.... and now are their favorites! Ashley started out being afraid of Space Mountain, but ended up wanting to go on it repeatedly. Same with Grizzly Bear Rapids,.. she always hated the two, big, waterfall drops, but now she loves it, and was even keeping both arms up in the air for them! She wanted to go on the Mali-Boomer, but is a couple hairs too short........ we were stunned she wanted to do it. She opted out on the Tower or Terror & Screamin California, but Courtney loved both. Brittney loved Screamin California, too. It was so great to be able to go on almost all the rides all together as a family instead of having to split up like we have previously to take turns because not everybody would go. We had to do that with a couple of rides, but that was it so it was wonderful! The kids got lots of autographs & pictures from/with many Disney/Pixar characters. We lucked out with the new Pixie Hollow, too. The wait line averaged 45 minutes to 2 1/2 hours, but the morning that we went, it was the first place we headed for when they opened so we ended up with only about 20 minute wait. To our disappointment, the Alladin show was out of service until the 12th, and the Electrical Parade, too, until the 19th.... Oh well,.. next time! We watched the Play Parade & the Christmas Parade. The castle's snowy transformation was really cool, but I will say that all those sites that tell you there is real snowfall from certain points along mainstreet arenot true..... it's bubblesoap. Still, VERY PRETTY & magical, just not "real" snow as advertised on some sites. Just an FYI. ;)

We actually had to grab our spot for the parade TWO HOURS beforehand, and it was all I could do to try to save it while Scott took the girls to go ride more rides (I didn't want them to lose time just sitting the whole time). It filled up fast & was packed elbow to elbow within a half hour so I was glad we got our spots when we did, but it was so cold after dark. After the parade, we decided to skip the fireworks... we'll catch those again on another trip,.... in warmer weather, LOL! The scooter did well. It lasted all day long,.... there were 2-3 nights that I had to get pushed back to the hotel because it died on the way, LOL,..... but there you go, MORE MEMORIES, heehee! You have to just take the good with the bad,......... despite all the negative things that happened ( & I didn't even go into them ALL.... this post is this long & it's just touching on all the key stuff.......!!! ), we still had a PHENOMINAL trip.

Others weren't as fortunate. On the way home, at one of the rest stops, we met an older couple who were from Washington, and had made it as far as Eureka, CA. They stopped to get a room for the night & went to have a look at the room before deciding on staying there. When they went back to their minivan, they discovered the whole back side window had been busted out and all of their belongings had been stolen,... their clothes, their camera, video camera, and they had left her purse & his wallet in the car, too, so those were gone,of course, as well. I don't remember if they had cellphones or not. They were on their way to Disneyland. They had decided to go for her birthday and Christmas... she just turned 60 and had never left the state of Washington, and now they were on their way back home, devestated. It broke our hearts.
We got home Saturday evening about 4:00 PM, and set in getting everything unloaded & put away. Scott had to head on to the shop that evening to square things away for the conference he has this week. He had to head out Sunday morning, and will be gone until the end of the week. Saturday was the day Carol passed away a year ago. It was also my late grandmother's birthday, and my sister's wedding anniversary.

Sunday evening I picked up the dogs from the kennel, and after getting back home, found that Tucker (our older male who has cancer) wasn't doing well. He wouldn't eat, was lethargic & kept wheezing. I looked him over and found that his mast cell tumor has begun to grow back. His other tumors were checked and their smears looked fine, but this one had been malignant so it was surgically removed 4 months ago. No one expected it to grow back this fast. He has a few other smaller growths I found as well as skin tags that have suddenly grown a lot bigger. I resolved to take him to the vet the next morning after I got back from taking Ashley to her Ophthalmology appointment. I knew that if the cancer spread, the wheezing & coughing could be due to tumors in his lungs or a sign of heart failure. At the same token, I also knew it could be Kennel Cough from being boarded, and even though both dogs have been vaccinated just a few months ago against it, they can still catch it.

This brings us up to yesterday. Ashley had her Ophthalmology appointment, and it took 2 hours. I knew it would take a little longer because they had to dilate her eyes for the slit lamp, but TWO hours?? My goodness... Honestly, I think they forgot about us because we sat thereor so long Ashley actually started to fall asleep in the chair, there was no one around, the other exam rooms were empty, and then on my third attempt to wander out front to find somebody, I found the nurse at her computer. She seemed surprised, then said something about them having a lot of eye emergencies........ where?? Anyway, the exam went well, Ashley's eyes looked good, the tumors looked fine (from that standpoint so far), and her retinas were textbook perfect (like my ears, hahaha). She may be developing a slight stigmatism, but they don't think she needs correction at this point, and they don't think it's related to the tumors. It was suggested she just have a standard eye exam for a follow-up in the Spring. She also determined this while Ashley's eyes were dilated, and when I brought this up, she admitted it wasn't reliable (your vision is skewed, blurry & often doubled). I am so sick of KP doctors. *rolls eyes*

After dropping Ashley off at home, I picked up Tucker and took him to the vet. He was so cold, his muscles started contracting & contorting so that I almost thought he was having baby seizures... poor old guy. Well, they asperated one of the cysts, and the smear looked fine. His bloodwork all came back good, no fever, and his lungs sounded fine. So, for now, they sent us home with antibiotics & pain meds for Kennel Cough. If he's not showing signs of improvement by Friday, I am supposed to take him back in for chest x-rays to make sure he doesn't have tumors spreading in his lungs. Two hours and another $150 later, we came home. Oh, and I was warned that the new safety regulations now require all personel out of the room for diagnostics imaging so now they have to sedate. His surgey ran us $700.00 *gulp*..... this old fart is draining us! But,... we love him.

I still had erronds to run, and since most of our stuff is still in storage with trying to get moved,.. I grabbed a small tree & a few decorations for it. So we put that up when I got home.
Surprisingly, I have been doing pretty well. Sunday, being back at home and having access to all my meds again, including the new ones (and yes, there was the bag sitting right where it had been left *sigh*)..... My labs showed I was deficient in almost every hormone & vitamin/mineral. My LLMD ND is starting me off slowly adding in new supplements. I had an adrenal he called in for me while I was away... and I noted some improvements just from that alone, but I still couldn't get around on my own well at all while on the vacation. Sunday however, was my first day to finally get to start trying the Cytomel in conjunction with the Synthroid. I rested most of the day, but in the afternoon I was moving around with a lot more ease. And then yesterday, with all the running I had to do, I was exhausted, but more like anyone else would be after all that...... and I didn't have to use my cane at all. I walked at a normal pace, not slow or slumped, and didn't have trouble getting in & out of the car. I was tired & sore last night, and I did take a Vicodin, but I wasn't too bad. I was noteably impressed with how well I was feeling because quite honestly, I anticipated coming home from vacation and ending up in bed for a week trying to recoupe like I have in the past! Instead, I've been waking up earlier, ready to get up and able to stay up..... that is saying something!

I had mesages from my KP doc saying my TSH hasn't changed & is still high. Hmmm,... didn't I tr to tell them this when I was there? But they made me do the labs again anyway, just to find out the same result. They refused to add in the Cytomel, which so far, seems to be doing wonders for me. Still no mention of doing this, she just sent me a letter saying she upped my Synthroid dose and to pick it up at the pharmacy, then come back for labs again in 6 weeks. I don't know yet what she increased it to. I have an appointment with my LLMD ND next Monday to go over all my lab results, and what all supplemental protocol we're going to do, plus I'll get my Igenex results, and start abx treatment for the Lyme. BTW, I also got the ELISA titer results back, and they were of course 'negative', but then we knew they would be. KP is known for this, and they even told me they were sending my blood to Virginia! Well, I already have info on what their practices are so,.. there you go.

Tomorrow, I'm taking Bailey in to finally get spayed, Friday, I have an optometry appt. & Ashley has a peds appt. Her ophthalmologist said I need to make an appt to see her also. I told her I tried and was told to go see my optomitrist first. She told me I don't need a referral for her, and I need to see both of them so I will be scheduling with her shortly. Monday I see my LLMD ND again, Tuesday Brittney has a peds appt., then next Thursday I have a neurology appt (did I forget to mention that? Yeah, I came home to another message saying I had been referred, LOL, guess my persistance paid off) and Ashley has her peds oncology appt, although that will probably have to be rescheduled because she needs her MRI done first, and we're still in the progress of getting that scheduled. KP sent the order to the wrong hospital (figures) so they're straightening it out. I called again today, but it's still getting changed. Let's see, then Courtney has her peds appt on the 23rd. I still have to get the chiropractor worked into the schedule yet, too.

Scott was on the news today & is being broadcast for a LIVE segment in the morning for the T3 Motion at 6:30 AM so if you're in Bend, OR, and get Ch 9 (KOHD), watch him! He's at the big police convention over there this week. I am hoping he'll be able to get a copy so we can see it.

What else,..... Oh, here's a newsflash: The girls & I are no longer vegetarians. Yes, you heard me right. This has been weighing on me for awhile now from a "faith" perspective, and after reading the book, "Eatin' After Eden" by Dr. Zook, and a lot of Bible Study on the subject we have determined that we fell into the trap that 1 Timothy 4:1-6 warns about. I am happy to talk about this with anyone who wants to know more about it. I highly recommend this book for all vegetarians, vegans, and non-vegetarians/vegans as well as Christians & non-Christians. There is a wealth of information that Dr. Zook has worked diligently to compile together for the reader. This was not my sole reason for returning to flesh-foods, but it did solidify the decision, and for my children as well. And, I have to admit, that the switch feels right both physically & emotionally. And, we are already feeling a difference........ no wonder I am so deficient in so many ways. And, soy, I have learned actually blocks the proper absorption of MOST nutrients! Almost everything I have put into my mouth the past 3 years has been soy.... I have been eating flesh-foods for a week now, and have noted significant difference in my mental clarity. Remember that "unedited" post I left a few weeks ago?? Well, you see how long this post is, and it too, is UNEDITED. I know it is not perfect, and that is not my aim, but look at this compared to the other...... I'm not seeing all the inversions and such that I was having before!

I'm going to close this now........ I know, you're probably thinking "It's about time!",.. that is, if you've made it this far, LOL,..... but honestly a LOT has happened in the last 2 weeks, and I wasn't around to post on it in increments. If you've read through this in it's entirety, you're awesome. If you haven't,... that's okay. It felt good for me to type it all out all the same. Kind of a "Whew! Set that load down!" kind of thing, LOL ;)

Despite everything, we are happy,.... We are home safe & sound, and we had a wonderful trip.

God Bless!!!!!!! XOXOXO

Tuesday, November 18, 2008

Labs Are Off to Igenex As We Speak!

I saw my LLMD again this morning, and he spent two hours with me Friday. We have gone through almost every aspect of my medical history, and other applicable data from my life... He's taking it ALL into consideration. He's going to be treating my whole body, and I really do believe that is key here. That's my opinion, and so I am thrilled to be in such capable hands.


Because of the comprehensive testing we did, and the subsequent conversations regarding the findings, and other concerns that were addressed,.. he had spent another two hours with me. Wow, that's some excellent doctor/patient attention going on there!


The comprehensive testing was really interesting, and he feels it is unlikely I have co-infections or the heavy metal toxicity as we feared last week. I did respond strongly to having Borrelia though.


Anyhoo,... we drew lots and lots of blood for all sorts of labs, we discussed several hormonal deficiencies, etc., and we talked about what treatment to start with for the Lyme.
I'm going to be starting several supplements over the weekend for my overall well being. Like I said, we suspect I am deficient is several areas, and so he's hoping to know by Friday so I start taking those right away and hopefully give me a head start on a "boost" before I leave for our holiday vaca next week.


I was going to start treatment today, but (and don't yell at me for this anyone), I really do not want to risk the possibility of any nasty herxing while on this vaca. I am systemic and have CNS involvement so I will likely not be feeling well. I honestly figure that if I've gone this long, 2 more weeks probably won't be the end of the world, JMO.


As soon as we get back, I will start on a combination of both Doxy and Samento. Don't know the dosages yet, but I do know we will keep treating until I feel better, and beyond, and then once we do take me off, we will watch in case I need to go back on. I will also be on various supplements, but don't have the list to tell you which ones yet. Oh, and a comprehensive probiotic, too. Plus, he wants me on an organic yogurt in addition to the probiotic.


Umm, labs for every possible organ, hormone, etc., and did the kit for Igenex and it got mailed off this afternoon, overnighted so they'll have it tomorrow.


Should have the results back when I return from the vaca!


Anyhoo,... think that's about it. Other bits & pieces, but overall, another very good appointment!
Think I'm going to kick back & watch a video shortly... Have a good evening everybody!


(((HUGS)))

Friday, November 14, 2008

What's BUGGING Me!

Well, as many of you know I finally had an appointment with an LLMD (ND), and that was this afternoon.

He is wonderful, and spent TWO HOURS with me today!! And,.. his office is only 9 minutes from my house! You gotta love that!


We went over my entire history, all 34 years of it... covered a lot of ground in those two hours!


So, I'm not going to keep you all waiting on what he said... He says Lyme (we knew it was, right?). What I didn't expect is that he highly suspects that I very well may have been infected with Lyme fo the past 20-25 years, and that may be where so many of my other medical issues have arisen from over all of these years. He thinks I have co-infections going on (we figured that, too). He does not think that the EM rash I had three years ago was the initial onset of the Lyme though. He thinks it was a reinfection to what I already had, and that at this point it is systemic Lyme. It is believd I have Lyme Arthritis, Neurological Lyme & Lyme Meningitis, and we obviously don't know yet how many co-infections.


He also thinks I am deficient in a number of areas. He couldn't even find my thyroid so we did an iodine test on my arm, and it is already almost completely gone. I can barely tell where it was now. He suspects several hormonal imbalances and also wants to test me for heavy metals toxicity. There's other things, too, but we are going to go into more of that when I see him again on Tuesday morning for further exams and to do various labs. After that, we'll work on a treatment plan.


Being an ND, he believes in treating the whole body, which is what I also believe. He also knows a LOT about Lyme, and many other things.... things other doctors have never taken the time to consider with me or listen to me... he is caring & compassionate, and I really feel like I am in good hands!


Today was overwhelming, and I learned a lot more about what is, and may be, going on with me than I anticipated, but what a relief it also was after my ordeal with my PCP's office & insurance and acting like I was nuts!


And so, I am finally taking steps toward a hopeful & eventual recovery.......... FINALLY!! And I feel SO validated... that feeling is so amazing!


(((HUGS)))

Tahnee

Thursday, November 06, 2008

Hinesights 20/20

I decided to go back through old posts on my blogspot, and I came across a few from back in the beginning of 2007 where they had been running various tests to try to figure out what was wrong with me, prior to slapping me with severe FMS diagnosis... Of course, even in the absense of my remembering the bull's eye rash I had had a year and a half prior, they should have checked me for LD. This just keeps frustrating me.

Just thought I'd share.... I warn you though, it will be long. But, after getting to know me over the last 2-3 weeks, you're probably not surprised, LOL

This exerpt is from a post I made on 1/14/2007:

[quote]....Last night, the pain had intensified so bad that I didn't even have to move for the pain to literally take my breath away. I was having muscle spasms like you wouldn't believe,... if I coughed it felt like I was going to puncture a lung. The spasms grew so great that it felt as though I had weights on me, keeping my lungs from expanding... It hurt to breathe. It grew to a point where I was crying out quite a bit, and after awhile,.. just plain crying....quote]


Here's an exerpt from a post I made on 4/10/2007:

[quote]....This has gone on long enough, and it's clearly 'something' and so (before anyone starts yelling at me about it, lol) I DID go see my physician!

I've gotten much, much worse,... It hurts to move,.. EVERYthing hurts. All my bones, every joint, every muscle,.. my hands, fingers, wrists, elbows, arms, shoulders, neck, back, hips, knees, legs, ankles, feet, heels, and toes,.... I am exhausted beyond belief, and even with adequate sleep (7-9 hrs) I am still feeling wiped out and in need of (almost) daily naps,.. and STILL feel tired. My eyes are heavy & fuzzy, it's difficult to concentrate because I feel so awful. I don't even have to be moving to be in pain. Sometimes, it's tolerable, others it's excruciating, and I have to fight from bawling,.. and still other times I can't hold in back no matter how hard I try. My skin burns sometimes, some of my muscle tissue burns, I feel bruised on all pressure points on my bones/joints,.. I have stabbing pain in places that don't make sense, and in my fingers, hands, elbows, shoulders, and knees, feet & toes. It comes on sudden, stays a bit, and then fades. It hurts to hold a pen to write, it hurts to hold a phone, hurts to hold the steering wheel to drive, hurts to walk, even stepping on or off a curb, let alone the stairs. It hurts to type right now...

I saw my Dr last night, and she said I definitely have some sort of rheumatoid thing going on,.. question is, WHAT. She ran me through all sorts of clinical tests, which I could do, but not without a great deal of difficulty so much so that she told me to stop trying because she could see it was only hurting me. She said it's definitely effecting my connective tissue, and she's concerned... And she doesn't think it's just my osteoarthritis anymore. I got labs done,... they're running a battery of tests which I fully anticipated. The tech took about 7-8 viles,.. said they were running 10 different tests. I know they're checking for rheumatoid factors, cancer tags, Lupus, and a bunch of other possibilities. I should have some results tomorrow, and she's referring me to a rheumatologist, which I'll probably see next week. In the meantime, she put me on Rx IB, vicodin, and muscle relaxers,.... OTC stuff didn't do ANYthing to help, and actually, the prescriptives didn't do anything for me last night either until I was finally so drowsy I didn't care anymore and basically passed out. I still woke through the night with pain any time I moved.

Anyway,.. *fingers crossed* for them to figure me out & help me,............... I seem to get worse day by day. This has been going on for [a couple] years, but has been getting closer together and worse each time. This is by far the worst I've been yet....[/quote]



Then I added this post on 4/12/2007, here's an exerpt:

[quote]....my labs are back, and everything is normal except my ANA was high, not as high as it could be, but high. This eliminates me from a number of possibilities, yet also opens the door to many others. For now, the big one that my doctor was considering being a plausable cause, was MS, which she has now ruled out, thank goodness. But,.. this still leaves an open door to the original concern of it possibly being Lupus. Now, it certainly may not be,.. about 95% of people who test with a positive ANA do not get diagnosed with Lupus, but the concern here is that I do meet several criteria. Basically though, I still have a great big question mark plastered on me,.... I should be hearing from the Rheumatologist next week and seeing him shortly after. There will likely be many more tests,.. more poking & prodding before anyone can come to any sort of conclusion.

In the meantime, my medication has been changed. The Vicodin was doing NOTHING for me, except add to my drowsiness. I was still in horrid pain even though I was taking 800 mg of IB, 1,000 mg of Robaxin (a muscle relaxer) AND 1,000 mg of Vicodin.

I'm still on the IB & the Robaxin, but they've switched me from Vicodin to Oxycodone. It's about as close to Morphene as you can get in pill form, LOL. Although, I don't care for how it makes me feel (like I'm highly intoxicated), [but] it IS doing a fabulous job in numbing my pain so I am greatful....[/quote]


They slapped me with Fibromyalgia at that point, and never pursued anything else any further...... I never questioned it.

Why the abrupt hault, and then "here's your new 'label'"???

My ANAs were high and I obviously had a lot of neuropathy going on. Neuropathy and muskuloskeletal are two completely different things,.. I had BOTH. I was having cognitive difficulties even then, not near what I have now, but looking in other notes I have from then, I had a lot of red flags going up. I was also having the ear pain & hypersensitivity then that they could never explain. Why didn't they pursue things further??

Hinesight,... I tell ya, it'll bite you in the cheeks every time!!

I will NOT be a victim.

So, I've decided to start keeping track of what's going on with me, symptom-wise (as I'm sure you've noticed lately), periodically because I just plain forget later, and it's alwayschanging! I am determined to be my own best advocate now more than ever. I WILL BE HEARD.

I've had to use my cane a lot. My left knee kept getting that stabing, hot poker pain on & off, and then I begand getting what felt like shorter shin splints in the 2" right below my right knee, and so much so that I could not bare any weight on that leg, even in just standing still. I seem to be doing better with both knees yesterday & today though although they still hurt.

My eyes are killing me. The pain just keeps increasing. My orbs HURT. It especially hurts to move my eyes so I find myself turning my head instead so that I do not have to move my eyes,.. There is a constant aching pressure, and I am squinting a LOT. Light bothers me. I have turned my PC screen waaaay down to a suttle grey. The tiny font in most books? Forget that, I have to focus too hard now. Thank goodness, our textbooks are a larger font that I can still manage to do school with my kids! I am constantly rubbing my eyes... if I gently hold my hands over my eyes or gently rub it seems to relieve the pressure for a few seconds,.. but of course then I see spots afterward,... sort of like after a camera flashes. You can see, but there are these floating, dark, but transparent 'spots'. My eyes are my BIGGEST COMPLAINT today. They hurt SO bad.

I still have a dull headache. This has been constant for weeks, if not probably months now. It's the dull kind that is tolerable pain for the most part. I'm almost getting used to it being the norm now because it's always there. It gets stronger at times & sometimes I take something for it, but nothing ever really seems to help so I tend to not bother most of the time.

The pain & hypersensitivity in my left ear is continuing to increase again. I have not missed this, and am not looking forward to it causing me more grief. It has not built back up to the magnitude that it had a year and a half ago, and I truly pray it does not do so again, but it feels lke it may very well be headed back in that direction.

My hips keep locking up on me, or at least it feels that way. I can only be on my feet for about 10 minutes before I start getting sharp pains in them {my hips},.. like sciatic pain, plus a bone on bone feeling whenever I take a step. It has sent me into tears. Going to the grocery store and being on my feet for 30-45 minutes walking slowly..... I hurt so bad, and by the time I am ready to get into the car, I can barely move. I cannot lift my legs to get them into the car..... I literally have to lift them one at a time with my hands. Then, it's a struggle to get back out of the car once I get home. I have to immediately go lay down, and rely on the kids to unload the groceries. Thank goodness they've always enjoyed helping with that prior to me going so down hill again.

I have been getting shooting pains down my legs and "hot spots" in my legs, hips, fanny, back and arms. When I say "hot spots" I mean I suddenly get a very, very warm sensation in an isolated place, like a single nerve, or cluster of nerves.

The rib pain is still there, on both sides, just a few inches below my underarms, and I've been having muskuloskeletal pain on the left side of my sternum. I hate that feeling.

The fronts of my ankles, the very front and going up about 2-3" from the tops of my feet, is VERY tender. It hurts if anything touches them other than the covers, or my socks. My shoes hurt my ankles. They fit, my feet & ankles just hurt, and wearing shoes makes it worse. They are not visibly swollen,.. they just HURT. I don't put my shoes on unless I have to leave the house and I take them off as soon as I get back. My feet & ankles hurt enough barefoot. I have been very tempted to just wear my flip flops some more except that with the change in weather and as bad I get if I get cold, I can't afford to make things worse.

Still having the insomnia issue,... not being able to fall asleep until between midnight & 2:00 AM, but actually waking okay in the mornings. Not as early as I would like, but I'm not having to struggle & fight so that's a refreshing positive for a change.

I have calls in, and an email, to an LLMD clinic in Seattle. I am on the edge of my seat waiting for them to contact me back saying they can see me soon........ PLEASE! I have friends & family up there I can stay with,.. already have an offer from one, and I haven't seen her in WAY TOO LONG so I am SO READY to take her up on it!

I know treatment will be long. I know treatment will likely make me worse before I get better..... but I am getting worse anyway. I have got to get better! I want my life back......

I am just fighting right now to get it together enough for our family's Christmas trip to Disneyland in Dec......... I. WILL. GO. I don't care what I have to do,.. I'm going with them. I will NOT be the reason we cannot go. I will NOT take that from my children.

I will NOT be a victim.

RIP, Leslie


Leslie Rae Wermers, 7/7/1967 - 11/2/2008

Exerpt from UnderOurSkin.com:

Leslie Wermers, 41, died from heart failure in her sleep on November 2nd. It’s hard to imagine Leslie’s heart giving out, because for anyone who knew her she was all heart. A dear friend to so many and a tireless worker on behalf of the Minnesota and national Lyme communities, Leslie gave everything she had to help others who were sick. And everything she had was an abundant reserve of love and support–even as her own health waned.


Please visit this page to read the entire story, and see video highlights with Leslie in her work.

http://underourskin.com/blog/?p=67


From me:

Leslie’s passing is heartbreaking…..

I am one who is still struggling to be heard. I will not give up… Leslie has left a powerful legacy behind. Her passing is wounding, but I am encouraged by her strength.

Leslie obviously made a difference. We should all be inspired to help continue her efforts. We need to pick up the baton, and keep moving forward in Leslie’s honor. In honor of all those who have lost the battle against this awful disease. In honor of all those who continue to be bound by it’s clutches. The voice of Lyme suffers must be heard, and Leslie’s passing must not be in vain.

My prayers are with the family also. (((hugs)))

Saturday, November 01, 2008

Patches & Treats




We got to enjoy two pumpkin patches this year... the first with our homeschool group down here in Marion County, and the second with our homeschool group up north in Washington County (where we'll be moving back to).

Oct 20th, we went to Bauman's with our S.H.I.N.E. homeschool group, where the kids got to play in hay mazes & whatnot, learned how to make fresh apple cider, got to sample it, pet farm animals, feed the pygmy goats, ride a ahy wagon out to the patch and retrieve a pumpkin, a gourd and pick an ear of indian corn off the stalk. Then we rode back and got to sample the farm's homemade apple cider donuts,... yumm!

It poured rain that morningm and so we thought we would have to cancel, but just as it was time to go, the skies cleared for us. And just long enough too, as no sooner did we get back from the patch, it began to pour again. The walking was hard for me, and I ended up in pain the rest of the day & the next, but we had fun.

Then, three days after that field trip, we went to Baggenstos Farms with our L.I.F.E. @ Home homeschool group, where the kids again got to play in hay mazes, climb hay rolls, and whatnot. We rode hay wagons out to the best pumpkin patch we've ever seen. The day was so beautiful, too. After pumpkins, we rode back to the main barns where we got to learn about potatoes, and the kids got to take home bags of red, yellow & purple potatoes.

We did their 5 acre corn maze, and it really didn't take as long as I was afraid it was going to. I was going to sit it out, but I didn't want to do that to my kids... I am determined to continue to participate in things! It did a number on me though, and I ended up in excruciating pain & bedridden for 5 days after. :(

They do a picture out of their corn maze every year, and then do an arial photograph of it. That's your 'map', and your only map... so you have to really pay attention. It was neat!

For trick-or-treating, Courtney dressed up as a veteranarian. Something she is thinking she may want to be when she grows up, and she is already planning to save her scrubs for when she starts volunteer work & internships at the humane society & local vet's office in a few years. Ashley dressed up as Lilo & Stitch... she wanted to be as authentic as possible, but I made her wear clothes underneath her grass skirt & coconut bra.... not warm enough in October here to be "nekkid" underneath, LOL! Brittney's costume cracked me up,... she decided to go as a 'Domestic Goddess'. It was a hoot!

I have still been doing so bad (pain & everything) that I didn't think I was going to be able to take them this year. Scott was going hunting for this last weekend, but he came home long enough to take the girls treating. And, he brought the scooter for me so I could go, too. I didn't want to have to use it, but I could not have handled going otherwise.

It ended up being a pleasant evening, and while the girls skipped from house to house around the neighborhood, my sweet hubby walked beside of me while I 'motored' along.

I think we need to get a new battery though because it didn't last as long as it used (when his mom used it a year ago). It did well enough, but ended up running out of juice & fizzled out on me about a block from home. I started to cross to the other side of the street and got to the middle where it just stopped, LOL. Poor Scott ended up having to push me the rest of the way back home!! It was so embarrassing, but yet it is really funny at the same time. He said, "It's okay, hun,... I still love you even though you're handi-crapped". Handi-crapped.......??? *rolls eyes* Poopy-head, LOL

I sure hope I can get in to the alternative clinics, and that these new treatments help me. I've got to be feeling better for DL in Dec! *ack*

Anyway,.... I've loaded new pics for those who want to see them.

(((hugs)))




Bauman Farms:




Baggenstos Farms:




And,... more of the costumes:

My Life in the "Lyme" Light (UNEDITED)

I just have so much running through me head again today that I decided to compile it all together... I am just raelly strugglnig here and want my life back.

I have been in debilitating states of health off and on, more on than off, for the past 3 years. A year and a half ago, they tested me for Mono, Lupus, MS & RA (all came back negative) before dignosing me with they called "severe" Fibromyalgia. Fibromyalgia seems to run in both sides of my family so I accepted it as such. However, I just cannot seem to get any better. I have always had something going on with me as long as I can remember. If you skim my profiule on MD Junct, you will see I've had something just about every year for at least the past 16+ years. I'm even missing a few things in that list, I'm sure,.. one being suspected of osteoarthritis since about 2000-2001 thereabouts as I had zero % cartlidge left in my left kneww and only 5% left in my right knee.

Anyway, despite all the health issues I've been through, none have ever had me in such the debilititaing states such as I have been for the past 3 years (apart from the Menorrhagia right before my hyst 7 1/2 years ago).

Each year, I seem to be getting worse now, especially in this past month, and that is why I had begun doing more extensive searches online in regards to the Fibro. Trying to find out if all my symptoms were really to be attributed to FMS or not because I have been feeling like this is so much more. I do not doubt that I have had fibro symptoms since highschool, but this just seems like SO MUCH MORE. That is when I started seeing things pop up pointing to Lyme, and that somewhere around 75% of FMS patients are really misdiagnsed Lyme. This caught my curiosity and so I looked further, then I became alarmed because I match so many of the symptoms,..... including suddenly remembering that I had a bull's eye rash right before all of this started.

I had not gone in to see a doctor then as my husband & I had just started our business a coupole of months prior and did not yet have health insurance. That came 6 months after the bite, and by then, I had forgotten about it. however, I recalled it after seeing the Lyme info here just a few weeks ago, and remembered that I had taken a digital photo of it and stored it in my old laptop. It took me half the day, but I finally found it, and I was also thankful to find that I had dated the photo in it;s filename: Aug 22nd 2005. Right before I started going downhill with all of my current problems.

I have proof of the EM rash, and I am very symptomatic of LD, yet my doctor refuses to see me. I had an appt., and they called and canceled me, telling me that unless it was for something other than Lyme, not to come in. I argued with them, and they said they would do a titer test, but that was it. They refused a westernblot and even more so, refused to gothrough igenex. This was only a few days ago, and I haven't gone in to the lab yet because I am so upset that they acted like I have brain damage and I was repeatedly told "there is no Lyme in Oregon". I thought if you had an EM rash, you were supposed to be treated with abx no questions asked?? From everything I have read so far (& that is a lot), I meet a solid criteria for clinical diagnosis yet my doctor will not see me for it.

I have found aLLMD naturopath who will see me (I have to wait until at least next week for after payday), and run labs through igenex. I haven't seen him yet, but based on my history (I just sent him key points - like I was going to post here although it appears I'm doing the long-winded thing again), and he said it strongly suggests Borrelia. he also said, we won't know for sure until all the tests are done.

These are the symptoms I have been experiencing the past three years since the bite,... some have mysteriously come & gone, some were for a short while then never recurred, and others have been continuous:

- EM Rash (bull's eye) (only last about 1-2 days if I can recall correclty)
- Picked a tiny black thing out of center... thought it was a scab at bite center, didn't examine it. It was not much bigger than the periods in these sentences.
- stiff, painful joints and muscles - freeze up on me
- cracking, crunching joints especially in neck and knees
- Burning bones sensations in arms, legs, hands, feet, and spine
- muscle & nerve twitching, not usually in face but have mostly other places, mostly my back & legs
- "crawly" sensations, maybe just blood flow in veins? feels creepy like bugs crawling on or under my skin sometimes.
- eye floaters, always had them, but they were pinprick-sized "dots", after bite had longer (maybe 1 cm so still small) wiggly ones,.. currently do not have them though.
- Pinched nerves easily in arms, hands & legs, go numb & tingling... have had constant half numb-half tingling in my left hand pinkie finger ever since bite. has never let up and continues even today
- headaches and sinus pressure without obvious reason
- Intense pressure in my head,.. feels like my brain will pop out of my skull at times
- Sharp pinging pains in my head, various locations, usually one place at a time
- Sharp eye pains, mostly strong pressure simialr to the brain pressure, feels like it's coming from the inside
- Unexplained fevers and chills,.. these are different feelings from when I know I am sick or having thyroid issues
- unexplained ear pain & hypersensitivity to sound (this lasted a year and a half then suddenyl stopped for a year and a half, and seems like it may be starting back up again. audotiry tests came back fine, no hearing loss even though at times I felt like I did, and others like i heard too well. told nothing was wrong so continued to suffer
- Sore throats, not so much sore but scratchy,.. comes and goes
- My hair continues to fall out even when my thyroid levels are fine (I am hypo - had grave's 8 years ago & RAI treatment). Thankfully, it seems to grow as fast or faster than it falls out so no balding.
- my glands in my throat are often mildly swollen, but mostly they are tender
- IBS: i go back and forth between constipation and diahrrea
- I seem to have all kinds of food sensitivities that i never had... i get nauseted and bloated, gassy, everything seems to make me not feel good after i eat
- only very periodic and rare, but i have had episodes of heart beating much too fast when i was just sitting, came on sudden, others it has seemed to skip beats. these episodes have been rare
- My ribs often hurt like they are bruised, especially high up within a few inches of my underarms
- I get horrific pain in my neck, shoulders, arms, hands, back, hips, knees, legs and feet
- My heels burn like they are fractured and can barely walk on them when they are like that. it's worse in the mornings, but can last all day sometimes
- i have been becoming increasingly off-balanced & lightheaded. I bump into things or catch myself. i have had episodes where i have felt I suddenly had no depth perecption and will fall past the last step or two on the stairs or off the curb, thankfully only scaring me more than injurying
- I have terrible brain fog. I often forget what i'm talking about mid senstence. I confuse things. I can forget something within moents of being told, not always but it has been hppening. I make mistakes. I've had to pull myself out of our business completely b/c of mistakes. I make spelling errors, typos and invert letters all the time. I used to be very proficient in elnglish. I usually go thorugh and try to edit to ctch what i can, but I still miss things. i can't seem to find all my mistakes even when checking over things a number of times. i am not editing this however just so you can get a feel for the all the numorous mistakes i have to go back and correct. this is not usualy for me. i feel dumb now I have to edit and re-edit all teh time now just for my writings to look half way decent or normal anymore. I lose a great deal of time going over and over my words trying to find all the errors and fixing them, and even then I am missing some. How this all looks has become the norm for me. Most people do not relaize becuase I work so hard and fight to correct it.
- I have severely alterterd and poor memory function, both long and short. I have been growing more and more concerned of this like I am going to end up with alzheimer's or dementia. it's scary to feel this way. I get confused and forget how to do things. I often feel like I am lsoing my mind or going crazy. I have VERY limited memories from my childhood, highscool and even from when my children were babies and toddlers................ it's like I wasn't even there for most of any of it anymore. Yet some things I can still recall great deal of. but it's like huge pockets of time are just gone!
- I can often know exacrtly what I want to say but cannot seem to get my words to correlate correctly with my brain.
- i often get an upset stomach or stomach pains after sex. I had never experienced anything like this before, and many things on my list of symptoms I never would have thought could be related until I saw them compiled together on lyme sypmtoms lists, but since they are i am now inclusing them
- My vison has been an issue. I have a stigmatism, but I've had basically the same Rx since I was 10 years old. I haven't gone back in b/c it seems as though this is related to my other issues and i'm hoping it will clear back up if i can get treated properly. things are fuzzy, blurry, my eyes hurt trying to read so I have really pulled back from trying much anymore other than helping my children with school or online stuff. thats' still quite a challenge.
- ear buzzing and ringing, apart from the pain and sensitivty complaints I also get a fuzzy noise, reminds me like, although much quieter, a bunch of crickets chirrping, sometimes it's a louder ringing tone, like if you struck a metal rod,.. that ringing, vibrating sort of sound
- I have been having breast pain, just in my left breast. Mammogram and ultrasound came back clear. I was told perhaps fibrostic cysts, but yet the scans were clear and I still feel pain & itching
- I have gained a lot of weight in the last two years, and I cannot figure out why, except the obvious lack of exercise, but still I am not an over-eter and I eat healthy mostof the time.
- I get night jolting frequewntly, some nights worse than others, some not at all, some just my legs, some my whole body
- I have sever insomnia sisues ever since the rash. I never had troubling sleeping in my life before that. I could usually fall asleep almost before my head would hit the pillow kind of thing. now, once I do finally fall asleep, I continue to wake consistantly through the night, then I have horrible time waking in the mornings and lose half my day just trying to get out bed. Some days I cannot even open my eyelids. Thankfully, that has not happened for quite awhile.
- I'm tired all the time, fatigued, moody, no energy
- depression is becoming an issue. i have not had to deal with any form of depression in 7 1/2 years since before my hysterectomy, none. but now i am feeling more and more alone in what's going on with me. I feel like a burden to my family now, and that I am letting them down. This is causing depression to set in although I try to fight it.
- I get stabbing pains in my neck, shoulders, back, legs, feet, but especially my knees lately. The pain is like a hot poker stabbing & twisting and has been enough that I have even screamed or cried during some episodes. I feel I have a fair threshhold for pain so to scream or cry tells me it is pretty intense pain. I usually try to hold it in, but more and more lately I find myself stopping and just leaning up against the wall trying to fight the pain, and tears will just start to roll down my face.
- most pain meds do not help enough. many don't even take the edge off. the only one that really seems to help is oxycodone and robaxin but I try to avoid them. I often feel drugs just make me non-functional, more so then what is already going on with me, although some relief from pain is necc at times.
- swollen joints... they don't tend to look puffy or red, but feel "full" a lot. I do deal with a lot of water retention altely though
- I have never been a big drinker, but on occasion I could always hold my own.... these days I have to be really careful because I feel quite tipsy after only one beer, or even half a glass of wine. It doesn't even really appeal to me anymore because I get nausetad from it and feel awful.
- bone pain.... they can ache so bad or burning sensations like the marrow itself is on fire. I get this the most in my arms and feet
- Feel like there is constant sinus pressure in the bridge of my nose and cheekbones/browbones and skull. Like I've been hit in the face with a shovel.
- my neck hurts so much. I have never experienced the kind of neck pain and stiffness I have been having, espcially this year. Some days my head feels so heavy on my neck that it is difficult to hold it up without holding my hand on the back of my neck to support it. I get "catches" in my neck at the base of my skull constantly.

I'm sure there are things I am forgetting, but as you can see, I am not well. Something is taking over me, and I really believe now that it is Lyme.

I live in Oregon, my doctor claims there is no Lyme in Oregon. The year I had the rash was 2005. It was August 2005 and that was the last year I had a large flourishing garden I spent nearly every day in. I tried to have one the folowing year., but I had to let it go becuse I have been declining so much. I was always an active person and a very hard worker. I handled most of the manual labor around the house, especially when it came to landscaping, moving furniture around, all sorts of heavy work, and I prided myself in it, as well as all the cooking & baking I used to do. Now, I can do NONE of it. My husband is away working most of the time so our yard & home look like crap most of the time. this stresses me out to no end. I have only managed to go on vacations with family this year by getting a lot of bedrest before and after and taking a hiugh amount of pain killers during, just so I can still be apart of making memories with my family. I don't want to become invisible.

I often use furniture to help me get around the house. I have a cane, although I avoid it's use in public. I am humialiated as I am only 34 years old and I have very stuborn pride. I had to use a mobile scooter just to be able to go trick-or-treating with my husband & kids this year.

Thankfully, we own one... my husband bought it for his mother to use on one of our last family trips together before she died of cancer because she wouldn't pay to rent one, and we knew she needed to use one. He figured at the rate I seemed to be declining, I may end up needing it myself later, and he was right. It has taken a year, but I have finally reached that point. I still avoid using anything most days, but I could not have gone with them without that assistance. I do have much better days where I can do more and enjoy life, but that was obviously one of my worse days.... and they seem to be incresing all the time.

What if my tests come back not Lyme,... this caanot just be Fibro!

Thursday, October 30, 2008

There is NO Lyme in Oregon!!

Got your attention, didn't I?


No, I'm not naive on this subject,.. my doctor is!! And I guess I was naive for thinking my doctor would respond better than this, but that is EXACTLY what they told me this morning.


They called to tell me not to bother coming in today because "There is NO Lyme in Oregon".
I told them, "I have all the symptoms of Lyme". She wanted to know if I "have been on the east coast recently?"... I told her "no, but that means nothing", she says, "Lyme doesn't exist in Oregon". I said, "Yes, it does, and I KNOW people here who have it". She asked me if they had been to the east coast. "no",.. "Then they don't really have Lyme".


I told her I have at least 80% of all the symptoms associated to Lyme INCLUDING that I had the EM rash, a bull's eye, a little over 3 years ago, right before I got so sick, and have been ever since. She wanted to know if I still have the rash!! "No, of course not, it's been three years."... Like, the rash STAYS on you the whole time!!


I told her that there is medical documentation showing Lyme is in fact in every state. I was told again, "Lyme is NOT in Oregon". I said, "ticks do not know boundaries, they cross state lines, they attach to birds, birds fly everywhere, the ticks fall off... deer are everywhere."... Again, "Lyme is NOT in Oregon."... ??!!


She told me if I really feel the need, then they will do the titer test. I said, "that's not a reliable test". She agreed, "no, it's not a reliable test". "then why do you use it?", I asked. "That's what we use, it's protocol.... EVERY doctor's office & lab in the country uses the titer first.", she says. I said, "well, I'll do the test, but I also want my labs ran through Igenex, which is a tick-borne diseases specialty lab, and "I WILL PAY FOR IT". She told me, "there is NO SUCH THING thing as a lab that specializes in Lyme Disease"...??!!


She said, if I want to do that I can, but they will not cover it. I said again, "I'll pay for it, I just need you to sign the form"........... they won't do it!


They said, after I get the titer results back, however I choose to proceed will be up to me, but they do not treat Lyme unless the titer comes back positive, and even then they feel whether negative or positive that the test is unreliable, and once again I was told, "Lyme is NOT in Oregon"....!!!!!


Well, poopoo on you, docs, I'm going to an LLMD!!


I know, it's a bad pun, but I am just so "ticked" right now, I could spit nails!! I know this doesn't come as a shock to anybody, and I knew to expect it too, but I did not expect them to be SO abrupt with the whole 'Lyme isn't in Oregon,.. PERIOD' attitude, and to CANCEL my appointment on me!! They won't even see me!!


I looked up info on my insurance this morning before they had even called. I suppose I cannot say 'who', but they are one that are also their own doctors & hospitals (hint-hint), and I found info that said they are in fact one of the worst when it comes to acknowledging or treating LD. I thought "oh, great! NOT",.. and I kid you not, 10-15 minutes later, the phone rang with the whole above saga taking place.


Oooh, and get this, in the same article I took note that it was mentioned that my particular ins./doctors also have some sort of policy in place that protects them from malpractice suits so that if they misdiagnose or refuse to treat, there is NOTHING you can do about it. I didn't know that could even be legal, but apparently they can. Makes me sick to my stomach!!


Oh, one more thing.... I swear, my blood is boiling, too,.. can't seem to get my mind off it & on other important things.


So, I even told them about how bad my cognitive skills have gotten, I have major long & short term memory loss, I make spelling mistakes ALL the time that I never used to, I type deslexic a LOT now, I have intense pressure in my head, and I make mistakes on things so much that I had to COMPLETELY remove myself from our business..... these are not things associated with Fibromyalgia!!! SOMEthing else is going on here, and has been EVER SINCE I HAD THAT BULL'S EYE RASH, and I believe it is Lyme..........


but, ya know,... I'm just some stupid layman who thinks she knows it all, right??


I was told, if I wanted to come in for something other than Lyme, then I could still come to my appointment,.. otherwise not to come.


I don't even want to go back there again,.. ever,.. for ANYthing now. :(


Persoanlly, I am thinking ignorancy & arrogance are even bigger epidemics than Lyme Disease,... and that's saying a lot!
I am SO thankful I found a good LLMD only an hour away. He's also a naturpath which appeals to me. I emailed him this morning after my fiasco, and explained everything to him,... not EVERYthing, but the key points for starters. He emailed me back, and wants to see me as soon as I can swing it. I told him I need to wait until payday next week. BUT,.. He said just based on the history I gave him it "strongly suggests borrelia"... he also included that "we won't be able to know for sure until we do the appropriate testing", and then added that he only tests for Lyme through Igenex. He gave me a lot of info on the fees for all the tests, and all the additional testing he would want to add if I come back positive, or even suggestive, plus for co-infections and all that. Also the CR57 or whatever that one was as a baseline for where I'm at and then attempting to gauge progress during treatment. He also added that even if it doesn't turn out Lyme, but something else, he can still help me (I mentioned how fed up I am with the conventional treatments for my "severe FMS" dx).


The info on his website sounds great, and his response was, too. I'm hoping I can get in Tuesday, but I may need to wait until the following Tuesday (he said a Tues or Wed was best so Igenex would have my labs by or before Thurs). My kids have their drama rehearsals Mon & Wed the next two weeks before their plays so we can't miss any... If I have to wait another week,.. it's not like I haven't already waited this long. One more week probably isn't going to do that much more damage................. Glad to have some positive news though after that dramatic saga this morning!


Sorry for the length again, guys!