Therapy is expensive, poppin' bubble wrap is cheap... you decide.

The Day the Eagle Cried - 9/11 Memorial

noreply@blogger.com (NeeNee) — Fri, 11 Sep 2009 17:32:00 +0000

Many, if not most, of you know, I try to repost this every year.
I wrote it on the first anniversary after this tragedy happened.

The Day The Eagle Cried

In Steadfast Memory of 9/11/01.
By Tah-nee A. Holloway © 2002-09 ARR

A beautiful morning, that September dawn,
The sun shining down, life strolling along,
Children eating breakfast, mom straightening dad's tie,
Not knowing how shortly the nation would cry "why?"
Too soon the pain coming would be realized,
This was the day the eagle would cry...
---
Planes flying closely, their intent we'd soon know,
With loved ones held captive by terrorist foe,
Through one crash, then another, the towers did sway,
They tumbled and crumbled, then gave away,
Tears streamed down, hearts broke inside,
It was the day the eagle cried...
---
Sirens screaming, smoke climbed the skies,
Our heros ran quickly with tears in their eyes,
Firefighters determined to find & rescue,
Worked side by side with their brothers in blue,
But one loss after another, the numbers did tally,
Soul after soul walked through the Valley,
As viewers sat glued to their sets nationwide,
That terrible day the eagle cried...
---
The terror this day had only begun,
Still more crashes came, the tragedy not done,
The assassins continued, more pain they'd inflict,
The heart of the Pentagon would be their next hit,
Soon after brave passengers would falter their plan,
As their plane crashed down on Pennsylvania land,
Instead of the White House, believed the next site,
The eagle cried out as more people died...
---
Years gone by, the pain is still real,
But steadily God touches us, and we begin to heal,
We'll not ever forget, the memory lives on,
Our prayers continue, our faith keeps us strong,
With His Word to guide us, the horizon's in sight,
In spite of their efforts, together we'll fight,
No terror how great can make us divide,
Not even the day the eagle cried.

And THANK YOU:

To every past, present & future U.S. sailor, soldier, airman, marine, coast guardsman, police officer & firefighter. For all those who are gone, but not forgotten, and for the loved ones left behind. For all those who carry on to fight the good fight... For those who are often slighted despite their efforts,... GOD BLESS YOU!!

I'm Still Here......

noreply@blogger.com (NeeNee) — Fri, 11 Sep 2009 17:29:00 +0000

I know, it's been about 9 months since I've posted anything..... a LOT has taken place in my life and I reclused. My apologies, and I will try to start posting updates again in the near future. (((HUGS)))

WE WILL BE HEARD!

noreply@blogger.com (NeeNee) — Fri, 23 Jan 2009 20:40:00 +0000

Copied from an earlier post:
"This campaign is committed to making the case for Lyme Disease heard by engaging your Governor, members of your State Senate, members of your State House, the President of the United States, members of the US Senate and members of the US House of Representatives.

The purpose of this petition is to make our voice heard in the fight against Lyme Disease. We need to establish as many signatures as we can muster in hopes to convince the Congressional Senators and House Representatives to see our movement through as they are the ones holding up the HR-741 and S-1408 Lyme Disease Bills in Washington DC.

WE INTEND TO BE HEARD."

New message: I just have to add one more--

In my last post, I shared my revision of the petition letter. I felt the need to personalize it and take a more dramatic approach. I was striving to electrify it-- I wanted it to jump off the page so hopefully it will really penetrate and they'll take notice. They need to realize that we do mean business. That this is an important and an extraordinary issue, we're passionate about it, and ultimately, WE WILL BE HEARD.

I want everyone to know that I did not share my version for any form of attention, but rather in hopes to inspire others. We need to stir the fire-- With every added voice, the sound gets louder and more impressive! WE WILL BE HEARD!

I entered mine last night, and my letter submission counted as #129..... I just checked again, and it doesn't appear there have been any new signers yet. I have emailed about 50 contacts-- I don't have nearly as many as I know most people do, but every person we can get to join us-- COUNTS! Lyme or not, pass this on... recruit, recruit, recruit!

C'mon, guys-- WE CAN DO THIS! It takes less than a minute to do your part. The site is set up so that all you have to do is enter in your information and hit "send". Eric Freedom already has his version pasted into the box. You can either leave it & submit his, or feel free to use mine as a template in place of it if you want a little more 'spice', LOL. Or, if you have the time & the drive, you can certainly write your own version.

But whatever action you choose to take, just take it, please--

If we don't take a stand, and do even this simplest form of activism, we are as guilty of idle contempt as they are. I realize that sounds caustic-- It's not intended to be. Just know I am trying to stir your hearts!

Please join us-- We NEED your voice! WE WILL BE HEARD!

http://healthcare.change.org/actions/view/lyme_disease_epidemic

(((BIG HUGS)))

Lend Us Your Voice!

noreply@blogger.com (NeeNee) — Fri, 23 Jan 2009 20:30:00 +0000

I feel passionate about this, and decided to rewrite the whole letter. Just wanted to share what I wrote & submitted:

Subject: Lyme Disease Pandemic

I am contacting you today because of an urgent and crucial matter: Lyme Disease.

It is pandemic and people are suffering due to poor recognition, uneducated & unwilling medical professionals, unreasonable insurance coverage, inadequate treatment protocols, and ultimately, neglect. Government action is required, and that response needs to be in the forms of providing the means for better awareness, more reliable testing, individualized and longer treatments, a stronger understanding of the disease by society in general, specific & required training of doctors and the entire medical community, and we need more clinical studies and grant financing to further indispensable research. These things are not an option, rather, they are imperative.

Lyme Disease is excrutiatingly painful and debilitating. Left untreated, it can cause it's sufferers irreversable damage including blindess, deafness, paralysis, deformities, brain damage and even death. Lyme is a relentless enemy demanding every ounce of it's host's energy, producing crippling languor and unrelenting pain & agony. It is an incapacitating affliction that depletes the entire body of valuable nutrients causing vitamin & mineral deficiencies, significant decreases in essential enzymes, causes blood sugar instability and seriously bankrupts vital hormones that are paramount to our well being. It drastically weakens our immune systems and robs us of the ability to repair & heal from wounds and other infections.

There are literally hundreds of conditions related to Lyme Disease. Compelling evidence shows that Lyme is being found to be the underlying cause in an alarming number of medical cases such as Chronic Fatigue Syndrome, Fibromayalgia, Bell’s Palsy, Parkinsons, Epilepsy, Lupus, Multiple Sclerosis, Scleroderma, Rheumatoid Arthritis, Hypothyroidism, Meningitis, Dementia, and Alzheimer’s Disease just to name a few.

Countless physicians have been abhorrently tormented, degraded & demoralized for their attempts in treating suffering Lyme Disease patients, as have scientists for their fundamental research because of a lack of bureaucratic acceptance that this disease not only exists, but is a phenomenal and devestating invader.

Lyme disease is not up for debate. People are wasting away while the CDC & IDSA look the other way. Because of the guidelines that are currently in place, millions of people, like myself, continue to suffer going undiagnosed, misdiagnosed or for being blatantly refused to even be seen by medical practitioners who swore a hippocratic oathe to do no harm yet their idleness does just that. Such is in my case. I was both mocked and evaded despite the fact that I met CDC guidelines for a clinical diagnosis of Lyme, complete with evidence of a erythema migran. I was told Lyme does not exist in my state, regardless of proof that it is, and not to come back if it had to do with Lyme Disease.

Lyme is an insidious disease. I urge you to view the documentary Under Our Skin by Open Eye Pictures, and then lend us your voice in the legislation.

Your citizens are crying out to their governent for help. What will your response be?

Our voices must be heard you guys,.. PLEASE send in your letter... you can write your own or use Eric's as a template, or even mine. Just please, PLEASE help us make a difference!!

http://healthcare.change.org/actions/view/lyme_disease_epidemic

(((BIG HUGS)))

HR-741 / S-1408 Lyme Disease Bills

noreply@blogger.com (NeeNee) — Fri, 23 Jan 2009 20:14:00 +0000

This campaign is committed to making the case for Lyme Disease heard by engaging your Governor, members of your State Senate, members of your State House, the President of the United States, members of the US Senate and members of the US House of Representatives.

The purpose of this petition is to make our voice heard in the fight against Lyme Disease. We need to establish as many signatures as we can muster in hopes to convince the Congressional Senators and House Representatives to see our movement through as they are the ones holding up the HR-741 and S-1408 Lyme Disease Bills in Washington DC.

WE INTEND TO BE HEARD.

Please join us:
http://healthcare.change.org/actions/view/lyme_disease_epidemic

Still Kickin'... I think.

noreply@blogger.com (NeeNee) — Fri, 23 Jan 2009 19:24:00 +0000

Well, it's been a little over a month since I last posted-- and now we're in a new year. 2009 already,.. where does the time go??

I'm not going to go into all sorts of details because I just don't have the energy, and what little stamina I do have left, I need to apply to other areas-- stay tuned, I'll be posting on one such element shortly.

Keeping this to a minimum, I will just say, that the end of December was difficult for us. Dec. 20th, we were awakened at 5:30 AM to find that our business was on fire. The aftermath was devestating, but a month later, we are somehow surviving and this just reaffirms my belief with all certainty that God is good, and reproves my profound reliance that He will always see us through every tribulation.

December 23rd also brought heartache as my grandmother, Mary, left this world. For me, and others in the family, the day was bittersweet because although it is always difficult to let a loved one go, we know in our hearts that she is in a better place. She is finally at peace, and for that, I am exuberantly grateful.

Leading up to these two events, I had about 3 weeks of good health where I felt better than I had in several months, although I was beginning to feel myself decline again. Lyme regenerates about every 28 days so I guess I was due to herx again, but the combination of the cold from the snow & ice storms and then with adding in both of the stressful circumstances that came about, it exasperated my condition. I was thrown into a tailspin, and despite my faith, I am only human. The body can only take so much and that brought on a feeling of immense despondence for which I had to take a step back and regroup. I had to reestablish my footing. The foundation was still there-- I was just feeling out of balance. But, at this stage in my life, I am of the acceptance that God designed me for adversity. I may not understand His reasoning, but I know there is a purpose-- and I will continue to do my best to serve His Will.

I'm Going to Bermuda!!

noreply@blogger.com (NeeNee) — Mon, 15 Dec 2008 21:49:00 +0000

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!

Winter Wonderland

noreply@blogger.com (NeeNee) — Mon, 15 Dec 2008 04:54:00 +0000

*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

noreply@blogger.com (NeeNee) — Sun, 14 Dec 2008 18:37:00 +0000

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

Disney's Christmas Holiday Parade

noreply@blogger.com (NeeNee) — Sun, 14 Dec 2008 18:27:00 +0000

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

noreply@blogger.com (NeeNee) — Sun, 14 Dec 2008 18:15:00 +0000

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

noreply@blogger.com (NeeNee) — Sun, 14 Dec 2008 18:03:00 +0000

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

noreply@blogger.com (NeeNee) — Sun, 14 Dec 2008 17:51:00 +0000

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. ;)

A Disneyland Christmas

noreply@blogger.com (NeeNee) — Sun, 14 Dec 2008 06:50:00 +0000

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!

noreply@blogger.com (NeeNee) — Sun, 14 Dec 2008 05:50:00 +0000

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

noreply@blogger.com (NeeNee) — Sun, 14 Dec 2008 05:42:00 +0000

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

noreply@blogger.com (NeeNee) — Sat, 13 Dec 2008 19:38:00 +0000

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.

Busy Week

noreply@blogger.com (NeeNee) — Sat, 13 Dec 2008 00:46:00 +0000

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*

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

noreply@blogger.com (NeeNee) — Wed, 10 Dec 2008 01:18:00 +0000

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

Labs Are Off to Igenex As We Speak!

noreply@blogger.com (NeeNee) — Wed, 19 Nov 2008 01:50:00 +0000

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)))

What's BUGGING Me!

noreply@blogger.com (NeeNee) — Sat, 15 Nov 2008 07:37:00 +0000

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

Hinesights 20/20

noreply@blogger.com (NeeNee) — Fri, 07 Nov 2008 05:01:00 +0000

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.

noreply@blogger.com (NeeNee) — Fri, 07 Nov 2008 03:25:00 +0000

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

noreply@blogger.com (NeeNee) — Thu, 06 Nov 2008 19:04:00 +0000

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)))

Patches & Treats

noreply@blogger.com (NeeNee) — Sun, 02 Nov 2008 06:06:00 +0000

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: