Lots to see!
I have posted several small picture posts tonight, so keep scrolling!
The intergalactic tea party was the beginning of these posts.
Lilly did get to spend a weekend with Gramma and Grandpa. It was wonderful!
Lilly looks forward to seeing me as much as I do her. She doesn't want to let go of me when she first gets here. Lots of kisses and hugs!
We had a family reunion this weekend down at the old folks - Pa's side of the family.
I'm pretty weak these days and the pain is still winning - big time.
I started out with the goal of wanting to take lots of pictures at the reunion and truly wanting to play catch up with cousins. I got very few photos taken and ended up in a small room trying to survive the extra assault on my senses (with RSD, even noise is a problem) that was pushing my pain through the roof. And praying none of the rambunctious kids would run into me - literally!
Lilly would find me again and again always hollering, "There's my Gramma!" We still had a good day together in the very large crowd. Lilly is very good medicine for this Gramma.
In all 40 -50 people were in attendance. I only had a couple of good conversations.
And in the end, the pain sent me running home not unlike Cinderella when the clock struck midnight.
I take my pain meds every 6 hours, they last 4 hours,and we were at hour 5. I take my meds quite precisely to have the maximum dose I am allowed in 24 hours with no deficit larger than 6 hours.
I would like very much to have another family reunion when I'm better.

I got a call to go get another blood test.
Once again the tech had to look it up in a book before they could draw.
My new drug, Lyrica is leaving me very lightheaded. Today I cut back my dose a bit and it helped. Tomorrow it is back to trying to climb up.
This is a drug you have to take very long time (weeks to months) to adjust to a wean up to full levels.
I'm almost at 1/3 the way and not ready for much more.
And we can only hope this drug will work for me as well as it has for other patients.
I have not received anything for my liver. It still hurts. I am still itchy, nauseous, and that in itself created massive exhaustion.
And all that was before the RSD monster was let loose.
And my Fibromyalgia.
And I still am suffering withdrawal effects.
All because some super quack thought he could just pull the plug on my Cymbalta.
My big "to do" for today was to shop our neighborhood Walgreen for a few small necessities. I knew I couldn't do Target - I needed to keep it a very small store. This shopping trip absolutely killed me off.
Then check out took forever - including a totally embarrassing price check. She finally got real stuck on something else and I as able to talk her through it. Target training is the best!
On the downside I was about ready to walk off and leave my stuff in the middle of check out, I so needed to go home and lie down.....and she was so freakin' slow!
My 'almost bailing' point? When she accidentally deleted my info and I had to run my card through again.
I'm in so much pain I was trying not to cry or fall down.
"Run your card again?" I was ready to walk.

Update
Police are at the neighbors again. I'm assuming they are not home. Their very large puppy won't stop barking and crying. It's 1:40am.

Another Update
3:08 The itching and fire are making it a rough night. Trying a warm cup of tea.

Lilly in her new Letterman Jacket.

Yes, she has officially lettered in princess!

Quiet Play

Lilly and Gramma at the family reunion.

Lilly with a kitten Uncle Earl brought to the family reunion.We both were in love with this kitty!

Lilly's swing is now on Great Gramma's! porch.
Family reunion Oct 2007

No family dinner wuld be complete without Mom on the piano and Aunt Kay on the spoons.

Uncle Earl at Family Reunion 2007

Niece Mary with the kitten at a family reunion.Mary is the angel who passed the doll house down to Lilly!

It's a small world after all.
And it spins!

Ready for Halloween

This Gramma had to get a photo op before sending it home with them. Lilly wanted to be a princess this year. Last year she was a duck.

Potty training is going very well. Lilly did have an accident earlier this evening and was quite upset. Her Dora's got wet. She was running as fast as her little legs would take her and hollering for Grandma to help. She kept lifting the lid on her duck hamper in sorrow. I surprised her with another pair of Dora panties.
Since, Lilly has figured out how to wear her favorite Dora Panties and make sure they stay dry.

Space, the final frontier......
Your Star Trek mission
A toddler tea party

Hostess Lilly does a great job of serving.
Silly Grandpa (probably in defense of his crew) thought the cups were a bit large.
I stated we were following Starbucks protocol.

It was love at first sight when Lilly laid eyes Dr. McCoy.
When first introduced to these characters, she ran to get her toy cell phone.
"I'm going to call Dr. McCoy!", she eagerly stated.
I'm not sure what she was whispering in his ear here.

Lilly has a nice tattoo on her arm here. I keep asking for them to be placed in non-photo areas, but Sandra pointed out Lilly would still show them to everybody.
I know she's right.

Party's over! Lilly starts packing up.

That doesn't look right.

More of the same
I saw my PCP today. She joined the chorus of doctors who think I should go back on the Cymbalta for a short time at least until the Lyrica can get to a doable dose. That could take a few months.
I'm not doing it.
It might help my RSD right now, but what happens when I have to stop it again? And I would. I do have a liver disease and Cymbalta isn't the best choice for that.
I'm not going through this hell-on-earth withdrawal again. Ever.

I burst into tears the second my PCP walked into the room.
I realized, at the end of the appointment, the tears were because finally I felt safe.
I could let my guard down and I didn't have to be in charge anymore.
Life is attacking on a lot of fronts right now. As a troop of one, I am running out of ammo.

With all of the doctors on my dance card - this is the only one I truly feel safe with. Minus the newest guru, I have worked very hard to obtain people I like and trust and have an excellent bunch of experts caring for me. But my PCP - I make all report to her and her opinion is the one that has the most weight.

I have been put on six weeks medical leave. She wanted that long to allow all my conditions and drug changes to work in some harmony again.
I love the company I work for. I love my job. It is with great sadness I have to do this.
And a bit of terror. I have more than one condition that put most people on disability permanently. I have to fight everyday for things like walking and being independent. I am so afraid of becoming housebound again.
Not a great time to miss work either. My Christmas season starts right now in my area of retail.

Happier stuff
Lilly and her mommy will be visiting this weekend. Lilly is the best medicine for this Gramma!

Since Lilly has been here, I have made a few more additions to the doll house. This is her favorite toy. Some people seem to be under the impression I am playing with it. I assure you I am not, but the new things do have to be arranged! And the dolls want to go inside when it is raining. ;)

The doll house was a gift from my very sweet niece, Mary Teresa, who had felt she had outgrown such things but knew how much Lilly would love it.
It was to be a special Gramma's house toy.

It had come to my attention this summer that
eBay was an excellent source for additional pieces for this.

One of my favorite new additions! The dryer spins!

This chair and ottoman set is 'new' too.
Finally Gramma can put her feet up!

This is a retired Playskool doll house. I have thoroughly enjoyed bringing it to full glory (and then some). And I'm sure Lilly and I will enjoy it for years to come.
Lilly has come to accept this summer that she cannot use the potty in the doll house and that she doesn't really fit on the beds. She's growing up so fast!
The last time we played she was concerned that her people had nothing to eat and her play food wasn't a good fit. Her table is set now! Sorry, arrived since these pics were taken.
And pay attention - there is a gargoyle on the roof and a pumpkin on the porch.

And in other news, I hate my liver specialist
Had my first big outing in almost a week.
I had all my questions wrote down to ask the"expert".
He walks in, fashionably late, and and turns my world upside down again.
Now he doesn't call it autoimmune hepatitis - just "liver inflammation".
He thinks it is brought on by my meds - which we have always been told - this was not the case. Which is why he took me off the med which has caused this severe withdrawal.
You know - the only one that keeps my RSD in control.
He felt it was the "most likely" culprit.
So he made me stop it cold turkey.
Knowing it would cause a major withdrawal.
Knowing I have RSD and it could blow out of control.
He was going to prove it with blood tests taken today. (read that: Shit - I got to walk across the whole damn hospital again)
One week without the drug would significantly lower my bad liver readings. Thus healing me. (Ta-Da!)

And, if my liver reading doesn't improve?
Never mind - You can go just back on the drug.
(Sadly, the only link I could find of this great character. A lost era and personal hero.)

They would have my results yet today, thus proving his greatness.
It doesn't take a rocket scientist to guess my results.
No significant change.
A very wise and very young friend told me today, "That is why they call it practicing medicine".

Cymbalta - an incredible drug that kicked ass with my RSD nerve pain. I don't think I can go back it again for emotional reasons. Withdrawal sucks and I don't want to do this ever again.

The upside is my pain doc started my on Lyrica today. A fairly new drug that could show significant improvement in my RSD and Fibromyalgia. You have to wean on it very slowly and don't ever feed it after midnight, I mean, quit it cold turkey. You have to take months to wean on and months to wean off.
This RSD flare is going to hurt for awhile.

My right side still hurts. Have a buddy stab you. Yeah - feels kinda like that. (liver)
I'm severely nauseous. (liver)
This itching will drive me completely insane. (liver)
Shivering while sweating profusely. (Withdrawal)
Massive headaches (withdrawal)
Cartoonish level of swelling in appendages (swelling started with liver - taken over the top with withdrawal)


My day started this good

3:00am this morning I called local police and they came out onto investigate a car parked illegally in a handicap spot.
The dark colored Grand Prix had no visible handicap plates - or - visible license plates for that matter. The police ran the VIN numbers.
An officer went apartment above ours and knocked loudly several times. He could see the residents hiding and hear the residents whispering. But nobody would answer the door. The police knocked several times, announced if someone didn't answer the door the vehicle would be towed. The police were getting quite angry. The police could hear them whispering and see them hiding. This officer was hitting the door hard with his flashlight and yelling. He was even yelling things like, "I can see you - Answer the door". He even yelled down to the other officer, "I can see a head bobbing behind the table". The officer was headed back down the stairs was telling his coworker to call for a tow, when upstairs neighbors and company finally answered their door.
I quickly offered the officers fresh baked cookies to tow it anyway. :)

When asked why they didn't answer their door; answers came flowing from several at once and included:
I didn't hear you.
I was in the other room.
I thought someone else would get it.
How did we know you were the real police?
My favorite from the token dumb blonde:
We had to clean up before you could come in.

I was falling down with uncontrollable laughter from here on in.

When the police are damn near knocking down your door and yelling things like; "Police! Open the door!", the correct response is to answer it.
Manners by ThisBearBites

Then they had another problem. Strong smell of alcohol coming from the 6 people there and no one was over the age of 21.
Everybody had a different idea of who parked the vehicle in the space. One officer actually came over to Rand and I and said, "Watch. We are really going to scare them!" And they did.
I had woke Rand up. His alarm was going to go off soon and Cops is his favorite show. We were both laughing pretty hard.

It is considered very nice to share your toys and other sources of amusements.
Manners by ThisBearBites

After much lying to the police by many, and the cops did put a bit the fear of God into these kids. One officer came over to us and said here comes the big answer for their lying and tilted his radio so we could hear. Dispatch reported the girl, suspected of being the driver, had a suspended drivers license.
She also been doing some underage drinking. No proper registration on the car. No plates. Proof of ownership. Insurance. Giving false information to officers. She lied about who owned the car, how she obtained the vehicle. Multiple stories for each. She gave three answers to two cops about who drove. None of those three answers included the words, "I was.".

A real friend should help you hide the body, but shouldn't be expected to take the rap for you.
Manners by ThisBearBites

I was still awake because of the noise they were making. I went to get a drink from the kitchen, looked out the window, and saw the car in the handicap spot. A real trigger for my rage. They should feel lucky I called the cops. That was about the third thought to cross my mind.

Tonights featured noises were Loud thumping, stomping, talking, and occasional yelling. They make our light fixtures and items on our walls rattle a lot. Our light bulbs are burning out at an amazing rate. One of their friends - "Joe" - needs to learn to use his inside voice.

Too Much Information is never a good thing for the neighbors to know.
Manners by ThisBearBites

The night before they had their large puppy running from one end of their apartment to the other, playing fetch I can only assume. That ended at 3:30am. By the way - they do not seem to pick up after puppy does her business. Usually this is right under next door neighbor's bedroom window. He is also disabled.

Pick up your dog shit and dispose of it properly.
Manners by ThisBearBites
(Or someone's DH who can climb stairs might pick it up and leave it in your door.)

They are quieter than they were in the beginning of moving in above us, but still loud enough to wake us at night on a regular basis.
Had I been asleep (ex. - sleep would be easier with no noise from the upstairs neighbors) I wouldn't have noticed the car parked there.

I usually do occupy that parking space. Disabled neighbor was being taken on errands so we moved the vehicle I was driving, so that his healthcare worker could get him in and out easier. Our vehicle was in the spot next to this, which is No longer a handicap spot. Since we are are down to One handicap spot, we have to juggle and suffer a bit.
I am now making this an serious issue with the office.
Damn ground maintenance crew removed it - also known as "pool boys".

Eye of the Storm
It was rough week that only got worse.
Tuesday I received a call from my liver specialist. They wanted me to go for more blood tests. Now. They wanted me to go to the hospital lab, several miles away and beginning of rush hour traffic. I convinced them to let me just go to my local clinic. Much more practical for me - few miles away and on the way to work.
Next, I was to stop taking another one of my pain meds. That one panicked me a bit. The one in question is what keeps my RSD livable. I asked how long I was to take to wean off it. I was firmly told to stop taking it - right now. Something in my liver pathology suggested it was a problem.
Finally, my pathology had been sent off to the super genius of liver stuff at the University of Nebraska. Meaning my doctor is really looking hard at something.

I had to wait a bit for them to to fax over the blood tests needed to the clinic. Gave me time to call work and let them know I was going to be late. There is always a wait at the clinic for labs. My favorite blood drawer isn't there. She can always get a vein on me. When I'm there if others should they walk in, just say forget it and go get Debbie. I'm not sure what tests were ordered, but they had to look through all sorts of manuals and call another lab to figure it out. They said they had never had to draw these tests before. Interesting. Also very late to work.

I stopped the drug as ordered.
I'm in pretty bad shape.
My RSD is full blown.
And internet research shows quitting this drug cold turkey leads to a severe withdrawal. One of the worse there is. The longer you have been on it the worse it is. People report severe problems after being on it for only a few weeks. I have been on this since last year sometime.
Update: Checked with my pharmacist it's been almost two years I have been on this.
I am in withdrawal hell.

Wednesday my biggest problems were dizziness, racing heart rate, headache, and severe joint pain. I had to take my shoes off at work. My feet had swelled to the point that when I took the shoes off, my feet were deformed into the shape of my shoes. And the fire was nibbling at me.

Thursday I had off - My weekend to work coming up. Bec came up for a visit. We went out for lunch and had a lovely visit. We were only out for a few hours. My feet were angry, swollen, and red when we got back. Pure RSD flare.

Friday I had to call into work. I couldn't get shoes on. My feet were so swollen when I got up, I couldn't get any of my shoes on - not Crocs or Birkenstocks. If you blew up a surgical glove until it was a balloon with stubs - Yeah, that was my feet. It didn't occur to me until later in the day I couldn't have drove with feet like that, forget the shoes!
Friday afternoon is when the pain begin to soar. And my head went south. As did my emotional state.

I didn't make it to work today Saturday either. I barely got as far as the kitchen and I was bawling it hurt so bad. I went back to bed surrounded by softness and still reeling in pain from everything that touched me. My day got better and developed into a raging migraine by late afternoon. I slept on and off and unfortunately slept through the time I was to take the only pain pill I am still allowed to take. I was in really bad shape.

This is the eye of the storm.
My pain pills give me real relief for only a few (2-3) hours. I can take it every six hours. During this eye of the storm my head is eased. The joints are a bit muffled. My RSD is a monster that won't be silenced. This is as good it gets. Which is also one of my favorite movies and that line always tears me up. I get it. Always have.

It is nearing the end of my calm here. Storm's coming.

And the winner is.....
Autoimmune Hepatitis.
Read more about it here, here, and here.

With Mom as my escort, I saw the liver specialist on Tuesday. He confirmed the diagnosis and added, "At this time we don't think it is cancer."
Yeah. I need a yes or no here.
I know they are being extremely cautious at this time. I am at a very high risk for liver cancer with this disease. The doctor wants to go over my pathology cell by cell. If he still isn't satisfied he will send it on to a top liver guru at the University of Nebraska.
I go back in two weeks, all reports and tests will be in by then and my drug therapy will begin.
There will be two drugs used: Prednisone and Azathioprine. Side effects of the drugs aren't much more fun than my current situation. Mom did that special inhaling noise when she heard the drugs I would be taking. Predisone was pretty much the cause of my Gramma's (her mother) death.
He wanted to run more blood tests, which entailed a long hike to the other side of the hospital.
I barely have energy to sit up these days. That was too much.
Somewhere in all of this long appointment, I received a call from my pain management doctor. They were getting results sent by my other doctors and wanted me to come in. Today and as quickly as possible. They are making major changes to my prescriptions to help fight the increasing pain.
Mom and I went to my Tarjey to fill my new prescription and grab a bite to eat. While eating, my phone rang. Yet another doctor wanted my to stop in to do an additional blood test.
She needed to check my potassium levels.
Points of worry - more than one doctor has expressed surprise that I am still able to go to work. Well Doc, It's done on pure grit and a sense of duty. It hurts to sit up, breathe, walking is now a form of torture. I should be resting all the time according to my doctors. Yeah - Thats pretty much how I feel too. But the work I do can't wait and I am the only one.
I feel a sense of loss on my future. Not only that my time here may be limited by a couple of decades; If I refused any new treatments, I will not make it ten years.
Absolutely not acceptable. I will be here - Lilly needs her Gramma.
I can look forward to even more physical limitations and my newest fear - these drugs are going to make me ugly.
Doctors won't answer the question:
How can I afford all this if they make me quit working?