Tuesday, September 29, 2009

Juliet ate Foam Rubber

I left for Jacksonville on Saturday morning and in the few days I've been gone:
On Monday David, who didn't crate Juliet before he left the house, came home to find Juliet had ripped up a plastic bag.  Mark invited the dog back into our bed (after I suffered through breaking her to a crate at night), and yesterday while Mark was outside working in his truck, Juliet found some foam, "like pillow stuffing" and shredded it all over the family room.  Mark never found where it came from.  Last night Mark found poopie on the carpet, but I have had her trained to go outside.  Somebody didn't let her out after her dinner... And Mark said it appeared her stomach was upset and the cleanup was icky.  Juliet eats a raw meaty bone diet and her poopies are never loose or stinky...something's wrong!

At noon today I got a call from David, announcing that Juliet spent the morning in her crate and had diarreah and was vomiting.  He bathed her and took her to the vet.  The doctor checked a stool sample, thought she could have intestinal blockage and x-rayed her.  Something, but couldn't tell, so barium and x-rays followed.  No surgery needed, and so Juliet got a anti-nausea shot and amoxycillin.  Hey, I'm here and they're there, and so I couldn't question why my dog got antibiotics for an upset stomach.  Maybe he found a high white blood count?  The cost was $350.

Tonight I asked Mark how Juliet felt.  He didn't know.  me-Did she eat?  mark-Yes, David fed her. me- Did she eat it all?  mark-No, there is still some meat in her bowl from two hours earlier. me- OH DUH no wonder she has an upset stomach, throw it out after ten minutes!!!  It's raw meat!  me-Did she potty yet:?  mark-I don't know. me-Please take her on a walk...bring flashlight and inspect poop.  Good night.
mark-Come home.

Is the Rituxan Working?

I feel pretty good!  Is the Rituxan working?  My large joints feel good!  I still have discomfort in my feet and hands, but this is the norm with all the damage I've already experienced.  I am wary to say it's working...'don't want to jinx my health.  My next infusion is on Monday, October 5th.

Momma's Heart, or Listen to the Coffee Pot Percolate!

Momma's health has been tricky in the past year, and a lot of it stems from a very irregular heartbeat. This past week has been pretty bad, so today the doctor changed her meds, which we hope will bring things back to good.  Kat and Larry live with mom and dad to provide care, and since Kat's grandson got so ill Friday, I came up Saturday.  My parents wake up before 7 and eat breakfast at 7:30.  Lunch is at noon and dinner has to be on the table at 4:30PM.  Their schedule takes getting used to, but I love visiting.
photo: Aunt Louise and Momma on a very good day in August - momma's birthday!

Grand-Nephew Joshie Diagnosed with Type-1 Diabetes

Two and a half year old Joshie (Robin's baby) has been feeling low for about a week.  Friday night his daddy Kevin, who was diagnosed type-1 a couple of years ago, on a whim tested Joshie's blood sugar.  The monitor wouldn't register so he called their number and was told that it doesn't register over 600 and to get that baby to the hospital.  His blood sugar was at 760 - scary and so high that he was in grave danger.  A long weekend in the hospital and now Joshie is home.  Robin and Kevin had lots to learn about babies with diabetes.  He will have a finger stick up to about times a day, plus four insulin injections. 

Joshie, Grandma Kat (holding Juliet), and Chris

Thursday, September 24, 2009

How ya feelin? HOT HOT HOT

I had such a nice time at Disney on Tuesday!  Oh how I love family!!  Tuesday  night, fearful that I might not sleep again, I took a Tylenol PM, and with that I slept very well and I had very vivid colorful dreams.  I don't usually remember dreaming, so this was such a treat! I dreamed I was having a Mary Kay party at the Magic Kingdom and I had six ladies at a card table right in front of the Cinderella's Castle.  The ladies were so excited to be chosen, loved the cleanser, but the makeup wouldn't stick, it just slid off their sweaty faces! They wanted to buy everything and I had to take a keelboat to the parking lot to get their product from my car.  End of dream one.  Dream two: Miranda and Ben invited their cousins Chris and Josh to go to Sea World for a birthday celebration.  Because I have a year-round pass, it was up to Aunt Marty to take all four kids and I pushed them through the crowds in a huge stroller, shaped like Shamu the Whale.  End of dreams.

I woke up early because I was roasting hot, sweating and miserable.  I layed there, wondering when I would get back to normal, when Mark woke up, complaining about the room temperature.  We went to the family room to check the thermostat and David was already there.  It was almost 78F in our house at 7AM.  There was something wrong with the air conditioner and I called American Heat and Air (AHA), because they are the folks that always send out postcards to remind us to have our A/C serviced. 

While I waited, I gave Juliet a haircut.  Her hair was so long it dragged in the grass and she was getting very dirty. Juliet HATES ponytails and so the cute top-notch that yorkies are famous for is out of the question.  As soon as I pull her hair up, she drags her head on the ground until the rubberband breaks, so first things first! I brushed her bangs forward and cut them off at the eyebrows, leaving some long hair on the top of her head so if I decided to try a hairdo again, she could still have a ponytail.  Next, I trimmed her ears with a battery powered clipper, shaving the top 1/3 of her ears clear of hair. I clippered her feet and trimmed up her legs to her elbows and knees, not shaved, but shaped up.  I straight-cut her hair to knee and chest length with scissors, then with the clippers I tidied up her private parts.  Again with scissors, I cut the long hair on either side of her face/neck so it flows smoothly into the rest of her long hair.  She's so cute, and I saved myself $40.

I paid the man from AHA $80 for the service call and I was told that our air handler (in the garage) and the recharger outside next to the condenser both needed replacing and also we needed a freon charge.  Total cost: $2777 AND we'd have to wait until Friday for the parts.  After he left, my friend Cathy suggested I call Mike Heaton, owner of Heaton Air Conditioning, who used to live in our neighborhood and fixes a lot of the neighbors' aging units and is known to be totally trustworthy.  I placed a call, he could come in the morning.

By the time Mark got home, I was a limp, weak, shaky, exhausted mess, too overwhelmed to even consider going to a neighbor for some cool air relief.  Mark realized how bad this was for my health (I was shakey and I had begun slurring again) and also that sleep would be impossible for both of us, so we went to the brand new Hampton Inn in Apopka and rented a hotel room for the night for $79.  On our way to the hotel we stopped for dinner at Wendy's.  Mark had a hamburger and I had a baked potato with brocolli and cheese, but I was still so hot that I barely ate.  We were very possibly the first guests in our sparkling new fifth floor hotel room.  The bed was like a cloud and the air conditioner was fabulously cool.  We set it at 72 and slept wonderfully all night long and woke up feeling refreshed.

The drapes made the hotel room so dark, that we didn't wake up until 8 in the morning!  We ate a free hot breakfast of eggs, ham and biscuits, and headed back to our hot house to let the dog out of her crate and wait for the Mr. Heaton to arrive.  Hey, she's a dog, and we had the fans blowing, so Juliet was fine.

Unlike AHA, Mr. Heaton said our air handler (the garage part) was fine.  Old, but fine.  It was not causing our electric bill to be high, and he said that "everyone's electric bill is high!"  Mr. Heaton replaced the rusted-out recharger (a part on the outside condenser) and filled the unit with freon.  Total cost: $421.   There is an expensive air handler that we could buy and this would cut about 10% off of the a/c part of the electric bill, saving us maybe $20 to $25 a month, but it was not advised if we weren't planning on staying here long-term, which we are not.  He mentioned that he is going to replace his entire a/c system in his 4-year old house next year with this elaborate money-saving system, as he is planning to stay in his house forever and there's a tax break for this expensive upgrade.

Knowing that our air handler is 22 years old (the compresser outside is five years old), it is inevitable that we will have to replace the handler before we sell our house.  IDEA! Why not replace it with the used handler that the Mr. Heaton is taking out of his house?  I asked him, and he agreed that this would be an excellent idea!  We are on borrowed time with the old handler, and pray it will continue to work until Mr. Heaton is ready to replace his.    Thank you, Cathy K for suggesting Mike Heaton.

I may have delayed recovery from the Rituxan with a day in the heat at Disney, followed by another hot day at home with the broken air conditioner.  I am tired catch nyself slurring my words like a drunk, but can control this if I pay attention.  My head is still a little fuzzy, and I have zero energy.  My house is now at my favorite temperature, 74F and I have a glass of ice water by my side.

Tuesday, September 22, 2009

First Day After Rituxan

My niece Karen, Christian, their two children Ben and Miranda came down from PA, and my sister Kat (my sister and Karen's mom, lives in Jacksonville) drove down together and we met at Downtown Disney.  While Christian and Ben visited the Lego store, Miranda went to Bippity Boppity Bootique for a princess makeover, complete with a tiny tiara adorned bun, lipstick, nail polish, and magic sparkles all over!  It was a wonderful birthday for a 4-year old who loves being a princess.  I met up with the crew at T-Rex, a restaurant that sells humongous hamburgers for humongous prices!  Kat and I shared, plus we each had a soda, and our bill totalled $27, gratuity included.  Welcome to Disney! 
I have never seen Disney so empty!  Summer break is over and big kids are back in school, so the Magic Kingdom guests were locals, and couples with small children, or perhaps homeschooled kids like my grand niece and nephew.  The hot weather kept people away too.  Look at the pictures, barely anybody there!  We were still hot, but not nearly as hot as we were before it rained.  We arrived around noon and got to go into all the rides that we wanted to do. (Karen and her son pre-planned), and left at 7PM as the park closed for Not So Scary Halloween, a kid party for an additional cost.  It was beginning to rain as we left.
So the Disney day was on Tuesday, one day after I received Rituxan, a chemotherapy drug that should help reduce the  symptoms of rheumatoid arthritis, but according the the doctor,  "miraculously melts" non-hodgkins lymphoma, but since there's no cure for RA, I'll have to settle for what it can do for me, if it helps at all.  So, it's chemo, and I took it and I had plans the next day...Disney with my niece and her family and my sister Kat.   I didn't feel up to prime when I woke up Tuesday morning, and decided  I'd definately use a wheelchair.  I had a note from the oncologist's office stating that I was not to be standing in long lines or heat.  I showed my note to the customer service desk in the "City Hall" at the Magic Kingdom and was issued a red pass.  This special pass put all six of us first in line at all the attractions.   Just flash the magic card!
 I had a little bit of an upset stomach since the chemo.  My stomach doesn't hurt, and this continues.  I guess that's to be expected when you pump your system full of poison.  Monday, the first night, which was the night before Disney day, I didn't sleep well, feeling hot through my body core, a little agitated, and not sleepy, but exhausted all the same.  I guess you might call it an anxious feeling.  I'm guessing the anxiety is from the double dose of steroids I got.  The heat I felt was through the core of my body, down my legs and out of the soles of my feet.  I'm usually chilly at night and frozen feet are the norm.  It was totally different than a hormonal hot flash, maybe it was a fever? My skin was cool and  I didn't feel sweaty.  I was too tired to get up and check, much less to think about taking any medicine.  I gave up on sleep around 4AM,  and felt a little wobbly plus my large bones were somewhat uncomfortable.  Not tooth-ache painful, but there was surely something going on in the marrow of my bones, especially in my  legs,arms and hip bones.  It was not arthritic joint pain.  Hard to explain, but I knew walking all day would not be a good choice.  I felt a little tired too, maybe from a poor night's sleep, plus I noticed that I was fuzzy brained and slurring a little; a drunken-sober person!  
Kat likes to push, so she was in charge of my wheelchair.  Karen and Christian got a double stroller for their kids, ages almost 6 and almost 4.  They never did ride together, but if they got a single stroller,  both probably would have wanted to be in at the same time.  Normal kid stuff...  The children were fantastically well behaved.  I think they were the best kids in the whole park!  It was such a great day!!! 
The weather was incredibly hot and humid.  Within the first hour Kat started to feel a little woozy and nauseated and so she got a bottle of ice cold water, which was the cure.  It was surely because of the intense sun and heat, and we heard other people were feeling the same.  I was in a wheelchair, so I wasn't putting forth any effort -  like walking, but I was still roasting.  My doctor advised that I cover completely, so I had on a special wide-brimmed UV protective floppy hat and a UV summer long-sleeved shirt over an absorbent tank top, long pants, and tennis shoes.  I sprayed all my exposed skin with #50 sunblock.  I drank cold water, and was strolled around like a queen!  The clouds were dark and we finally got a quick rain around 2, nothing big, just some drizzle to run through, and this made a huge difference in the weather for the remainder of the day.  We rode the Brer  Rabbit water ride and we all got pretty drenched, which was terrifically refreshing.

Large crowds of costumed locals were arriving for the Halloween Party as we were leaving the park, and the skies opened once more to emit cooling rain. We were happy to be on our way out! Another stop at Downtown Disney to get my car, a Lego Land prize for the kids, and finally to grab a happy meal from McDonald's. I left in my car, and they headed back to Jacksonville in theirs, a 2-1/2 hour drive. It's only a half hour drive for me, but I had to stop off at Publix to pick up a prescription. I was home, showered and asleep by 9.

Rituxan - First Night

I am being treated for Rheumatoid Arthritis with Rituxan (scroll down in link to Treatments, go to bottom of list).  My day at the doctor's office was long, but my first Rituxan treatment was somewhat of a success, as I was able to complete the treatment.  We'll see in a few weeks if this drug relieves some of my RA symptoms.  My oncologist, Dr. Lynn, says Rituxan melts cancer, but unlike cancer, RA is not curable.  This doctor says if I don't show signs of rejection, I can remain on this drug for a few years, or until "something better" comes along.  I instantly knew that I'd like this doctor, a nice feeling. Why is it that female doctors allow patients and employees to use their first name?  I don't call my rheumatologist Dr. Bob.  Well, anyway I am glad, because Dr. Lynn has a huge last name that doesn't roll off one's tongue easily, something like Van Umerlington.  I can't recall exactly.

Evening: Although I was groggy enough to slur from the massive amount of Benedryl yesterday, I was wide awake.  Perhaps it was the combination of drugs, moreso the steroids.  I ate a small dinner and felt like I'd eaten Mount Methusela, but still craving sweet/cold, I  (much later) enjoyed a fudge ice cream bar.  After halfway watching the Dallas Cowboys football game and whatever other drivel Mark had on TV, we headed for bed around 11:30.  Mark was surprised that I hadn't passed out in my chair, but I had kept myself occupied with this handy-dandy miniature pink laptop, still the best Christmas present ever!

Bed:  I washed my face and made sure to apply extra Mary Kay Night Solution, as it adds vitamins and removes free radicals - unwanted garbage absorbed into the skin from the environment.  I'm guessing there was plenty of junk floating in the air of the recliner room yesterday, as all the patients were receiving a variety of chemo for cancer.  I was the only RA patient.  Recalling a couple of years ago when I got Remicade infusions (at an oncology clinic), my thick mop of hair got a little thinner, and that was not a side effect of the meds I was getting.  Once in bed, I was restless.  The clock glowed, I got up and covered it. I think there were three potty-calls between 11:30 and 4:30, completely uncommon for me.   My cell phone charging light was bright, covered it with a washcloth on a return visit to the restroom.  My pillow was hot, my feet were hot and my neck felt sweaty.  My body core was hot, but my skin and legs were cold. The dog usually sleeps against my ribcage, a tiny ball of warmth, tried and tried, but must've felt I was a giant ball of warmth and kept moving away. Mark snores softly, but tonight it was as irritating as a jack-hammer next to me.  I ran through lists (I am a champion list-maker) and wished I could turn on the light and write everything down, but didn't want to disturb my husband. The clincher was a tree frog outside the window, calling all his mates, just a yard from my pillow.

Pre-dawn:  Slipped out of bed, leaving behind the snoring duo of husband and doglet, left the door ajar just in case the Juliet missed me, lest she wake Mark to open the door. With pillow and blankie in hand, I tiptoed into the family room, which is far enough away that the glow of my computer screen in the dark won't bother anybody.  Although the hives left with the second batch of meds, I notice some itchy irritation in the warmer places of my body; behind knees, groin, armpits, but it's easy to resist the temptation to scratch.  I looked in the mirror and saw nothing, so it may just be paranoid memories surfacing.  I consider taking another Benedryl at home, but choose not to, as I need to write a list and be "up and at 'em" at 7:30.  I occupy myself on the computer and keep an eye open for outside critters walking past the windows in the moonglow.  It is not uncommon to see deer and bears just before dawn.  Nightfall is getting later, as is the dawn, as fall nears.  I like this, as I sleep best in the black darkness.  Another reason I enjoy fall and winter so much.

Today:  My niece Karen lives in PA with her husband and two children (almost 4 & 6) and they are in Jacksonville visiting family. My sister Kat is Karen's mother, and she will come along from Jax too. How fun!! A  sidetrip to Disney is a requirement when you bring children to Florida! Miranda is scheduled to be at Bippity Boppity Botique in Downtown Disney for a little girl princess beauty makeover (birthday request, she'll be 4 next week), followed by lunch at nearby T-Rex Restaurant to please Ben, and then we head on over to the Magic Kingdom.  My mother's health is pretty fragile, and Kat and Larry moved into their house to take care of momma's health, cooking and cleaning, be her driver, and handle everyday operation of the house. Daddy is well, but has the expected aches and pains of a 79-year old man.  Getting Kat down here was a coordinated effort, as we arranged for Patty to take a day off of work and spend it with mom.  It is a fluke that the appointment for my first Rituxan infusion was the day before Disney, not what I would have scheduled, but it was the only time available for both.  I don't know how I'll feel yet. I could be a ball of fire, bounding down the sidewalk like a teenager from the steroids, which by the way, makes a person feel like they're starving to death 24/7 and gives me a little foggy-brained confusion.  Or I could be totally wiped out, feeling like each step I take is through waist-deep mud.  If this is the case, a wheelchair will be used.  My doctor tells me to try to avoid heat and wear sunscreen, long sleeves, and a hat.  The meds don't mix well with sunshine.  I chose a short sleeved t-shirt, lightweight slacks and tennis shoes, but I need a hat and all I have are ballcaps.  Since it will be in the 90's today, I want to pick up a long-sleeved top at the camping store that blocks UV rays and breathes.  I have a lot to do before meeting everyone at Bippity-Boppity Botique at 10 this morning.

LIST:  Pack light backpack with sunblock, sunblock lipgloss, comb, wallet (tickets), kleenex, Benedryl (you never know!), pain pills and meds, bottle of water, packets of cheese crackers and raisons, camera, cell phone, charger, zip-loc bags for waterproofing (afternoon rains are a given), a rain parka and a tiny umbrella. Get wheelchair cushion from The Lizard (spare car - an old green Monte Carlo). I can't get the seat high enough for short me, so it's a fixture in that car.  Take video back to library, cash check, swing by Mosquito Creek Outfitters store for long-sleeved shirt.  I'm hoping for a light beige/sand color to match my slacks. If they can't help me, I'll end up in Target or Marshall's on my way to Disney.

Right Now: My hips and thigh bones ache, not an RA symptom, but possibly from the new meds. I feel like I weigh two hundred pounds and moving about is an effort, which means I'll probably rent a wheelchair in the theme park. Kat is a happy chair pusher and compares it to the comfort of pushing a shopping cart, something to lean on. I don't like using wheelchairs, because people look at you with the "You don't look handicapped" judgement calls.  People in front of you in the flow of traffic sometimes stop abruptly and then get upset if their ankles get hit.  I am glad not to have a headache, flu sypmtoms, or any other myseries that can occur the day after a drug infusion.  I am happy to report that I feel cooler and my torso and the soles of my feet aren't on fire anymore.

Monday, September 21, 2009

Rituxan Day for R.A.

I strolled in at 11AM, plunked down my 20% ($1,128.00) and headed to the back of the oncologists' office to prep for my first run of Rituxan for rheumatoid arthritis.  The bulging vein in back of right hand looked good.  The Thing 1 (phlebotomist) placed the IV perfectly, popped the vein and slipped right in, but it hurt like the dickens.  "Owie-owie-owie," and I was sooo ashamed to be such a baby, especially since they use a baby-sized butterfly to stick..  Shoot, I've had so many vien punctures, I could do my own, but this one was something.  Much more uncomfortable than if had she hit a valve.  Thing 1 had to work to get a stream and partially fill three tubes, but by the time she had wiggled and moved the IV tube in and out of my vein, back and forth, stretched the vein, anything to coax my vein to cooperate, the first tube coagulated.  It was incredibly uncomfortable.  When she tried to rinse the tube with saline, it wouldn't budge and it was clear that the vein had blown out and a big bruise was growing.  Left hand, not uncomfortable at all to start, but the blood just wouldn't come.  Another blow out, complete with bruise.  I drank a second bottle of water, said a prayer, and the head nurse (Thing 2) came in, smacked me around a bit (okay, so she struck my arm with two fingers to surface a good enough vein) and chose one slap-dab inside my elbow.  "Do you mind having it here? You will have to keep this arm straight."  "Do I have a choice.  And will you be my official page turner today?" This vein held.  Blood volunteered itself like it was off in the races, three full vials were drawn, then off to the recliner room with my book and blankie. My doctor popped in, sat in the recliner next to me and we chatted for a minute.  She was happy to get her feet up for a minute and we did our appointment while Thing 3 strung me up.

The first bag that went in my IV was a small bag of steroid: solu-medrol, which was followed by an IV bag of Benedryl. It felt warm going in and made me feel warm from the inside and groggy, like drinking a few shots of rum.  Next was a mongo-sized bag of the Rituxan, like the last two IVs, was nice and clear like glacial water.  I was glad it wasn't flourescent green or any other disgusting bug-guts color.  The drip was ultra-slow (one drip per four seconds) on purpose, as they were watching for rejection.  I was doing fine, listening to music on my iPhone, but too groggy to read the pages of a book.  The back of my throat felt really dry and almost sore and I reached for my water.  Moving made me realize my entire torso was itching/burning, like I had just had a mass attack of fire ants.  How fast do you think I can move the little line pincher?  You got it, and I did!  Thing 3 and Thing 4 examined my face, neck, and torso, stopped the IV, and sommoned Thing 2.  I was allowed to go to the bathroom and remove my bra that was making the hives feel much worse and examine my situation in the mirror.  Entire torso, starting at the face, ears, neck, and going down to my thighs was a giant red and white welt. 

A new mini-bag of steroids was started, this time Dexadron, followed by another bag of Benedryl, and another timid attempt at the Rituxana.  This time, it was a success.  The bag of medication that was supposed to go in over a 4 hour period had only 1.5 hours before closing time.  God was with me and I didn't have a moment's trouble.  I do know how to demand attention though, just become a giant hive!!  I took a picture, but it was after the second bag of Benedryl, however some red blotches still remained.

I left the office at 5:30, a little wobbly from a double-dose of Benedryl and very very tired.  Mark stopped on the way home at a Chinese takey-outey,  and a chicken from Publix.  I wanted a Rita's mango frozen Italian ice, but Mark didn't want to eat anything sweet before dinner.  Next time I'll have to insist, as I am still Jonesing for a mango ice thing.   The big question is, when did I get that giant rooster-goozle that hangs between chin and neck??? (blame it on hives!)

Saturday, September 19, 2009

My Melungeon Ancestry

I have learned that my family history may include Melungeon ancestory on both my mother's and father's sides.  Melungeons, often referred to as American Indian or north African decent, are a fascinating group of people from Mediterranean ancestry that settled in the NC area in the 1700's-1800's.  Typical is my father's coloring of ruddy skin with black hair and bright blue eyes, plus his family is from Salisbury, NC.  I have heard stories about a great grandmother that was an indian, and wonder if this is the connection.  The Melungeons took on simple names, and my maiden name of Wise is amoung them.  My mother's ancestors came from Spain (with Greek ancestry) and may have married Melungeons, as they settled in the same area.  I don't know for sure, but it looks right, plus, Momma's got the physical traits.

A rule of thumb to test if  we iz or we ain't is the inherited trait of a bump on the back of the head and shovel teeth. I have both. "Shovel teeth" is a ridge at the back base of the front upper teeth.  When my mouth is closed, my lower teeth sit nicely in that ridge, and I was surprised to learn that the whole human race doesn't have such a clever bite. The ridge drives my dentist crazy, as he's just waiting for cavities to form in the crevasses, which in 52 years, still hasn't.

So what is to learn about this heritage?  Health problems!  Mediterranean deseases that are very rare in the United States and are similar to symptoms that I have suffered from for years now: fibromyalgia and rheumatoid arthritis and other unexplained pains and fevers.  I very well may have a illness called Familial Mediterranean Fever.  The fix  is a pill called colchicine that is derived from crocus (a Mediterranean flower).  How about that??

Possible Rituxan Delay

I got a call on Friday from the insurance lady in my oncologist's office, saying that Monday's appointment for my first Rituxan infusion may have to be delayed.  She bagan talking to the insurance company last Monday, but the insurance company is hesitant to approve such an expensive drug without some background.  They require proof of my 22 year history with rheumatoid arthritis, and a list of all the support medications I've had, plus that I have taken biologicals in the past that stopped/didn't work;Enbrel, Remicade, and Kineret, AND that I am currently taking Methotrexate (have been for about 20 years).  This is all true.  So what's the delay??  By Friday the approvers at the insurance company hadn't made a decision.  If I get approval Monday morning, I may still be able to get that infusion I'm hoping for at 10:30.  The doctor's office is about 45 minutes away, so Mark and I will probably leave before we are certain that this will actually happen, taking the risk of having to turn around and go home.  Sigh.  I really really want to do this on Monday, because I have to go back in two weeks exactly for the second infusion.  My calendar is tight...I'll be either in Jacksonville in a week or two, and then to NC October 9-17.  Time constraints!

Disney with Family

Thinking about my two sisters in Jacksonville, and how Patty's boyfriend LOVES Disney, so she has a Mickey Mouse overload, and that Kat hasn't been since her girls (now adults with children of their own) were young.  I placed a call to my favorite company that I work for in Spring, doing tours with high school marching bands, and asked the owner (my boss) if he happened to have a spare Disney ticket.  Oh my, he DID!  I was prepared to pay the cost for it, but he just gave it to me and made me promise I'd keep the last week of April and first few days of May open for some groups coming in.  I asked Patty if she could take a day off and spend it with momma so Kat could come to Disney.  Oh joy!  Kat will ride down from Jax with her daughter Karen and her husband and their two children.  It will be so fun for Kat to spend the day at The Magic Kingdom with her grandchildren.  I'll  be there too, I have a 3-day pass with two open days on it.    The secret to a smooth day with a large group (6 of us) is to have no agenda except whatever Karen and Christian and their children want to see.  It'll be great! We'll have such a nice time.

Tuesday, September 15, 2009

Company Means Disney World!

Next week my niece and her family are coming down from Pennsylvania to visit family in Jacksonville. Disney is a requirement when kids are almost 4 & 6, so we'll go on Tuesday. We'll meet for lunch and spend the day in the Magic Kingdom, then they'll drive back to Jax that evening. It's only 2.5 hours away. Sure, they're welcome here, but the inn is pretty full with both boys living at home.

Rituxan for Rheumatoid Arthritis

Rheumatoid Arthritis is a pain that has no cure! There is a biologic medicine called Rituxan that may offer some relief, and so I am scheduled to have my first IV next Monday 9/21/09. All the information about it is at www.rituxan.com.

The infusion is given at an oncologist's office. Oncologists are not just for cancer. I will be in a room lined with people in recliners receiving a variety of IV medications, some for arthritis, most for cancer. We watch tv, read, knit. My medication will take about four hours (or more) to receive. It's given in stages, small amounts at a time so I won't have a strong reaction. We are instructed toeat breakfast, bring lunch and bring a blanket (the room is cold). There are a variety of side-effects, some horrible and deadly, but more common are itching, chills and a headache.

I had to have a negative TB test, take a flu shot, and have bloodwork, which have all been taken care of. Now it is up to the insurance company to set a price, which I think will be 20% of the infusion price. I hope it will be lower, as the price for biological therapies are usually astronomical.

I'll keep you posted.

Monday, September 14, 2009

Red Tailed Hawks

The hawks must be nesting in the big oaks all around our neighborhood! I wake up to the sound of hawks (an eagle call basically), and hear them all day. When a hawk calls nearby, squirrels stop chattering, blue jays and cardinals hush, and the world turns silent except the response calls from far away hawks. Eerie.

Friday, September 11, 2009

Squirrel Dinner

The bird feeder I put up several weeks ago became a squirrel restaurant. There have only been three little songbirds on my watch. I've become up close and personal with the squirrels, names and all. Lumpy was skinny and had a severe bot fly infestation when he first started frequenting the feeder. Bot flies are seasonal and only go for squirrels. Yesterday I was admiring how well he has recovered and what a chublet he had become, and then BLAM! A red-tailed hawk swooped down in a flash of feathers and huge wings and disappeared with Lumpy. It happened swiftly and silently, as fast as the blink of an eye. It is my hope that Lumpy didn't know what hit him.

I have reason to believe that either a hawk has a nestin, or they roost and hunt from, one of the tall oaks at my end of the cul-de-sac. I can hear them. For the safety of my squirrel-sized dog, we have locked Juliet's doggie door until further notice.

Monday, September 7, 2009

Rattle Snake

Our next door neighbor, Chris, killed a five foot long rattlesnake today. His three little girls and a neighbor boy pose with the dead snake stretched out before them. Chris tossed the snake into the woods and buried the head as a safety measure.

Adult Sons Live Here

I read online about a woman that wanted to get rid of her two adult children. She cut off the cable TV and internet connections, put a lock-box on the thermostat set to the cheap side of uncomfortable, and quit buying groceries... It took 2 months, but they left.

I don't really feel that my sons need to leave. I do, however, feel that they need to pull their weight. We pay for auto insurance, health insurance, cell phones, and keep the pantry filled. We ask that the thermostat be left alone, but I end up turning the air conditioning warmer each morning.

Robert is in law school. He is in class or in the law library from 7AM-10PM every day of the week. Weekends are playtime, and he's gone with friends almost every weekend. He eats out and drinks and goes to football games. Robert cooks breakfast for himself and starts a pot of coffee, then puts his dishes in the dishwasher and washes his pans. Robert worked in a lawfirm this summer, but spent all the money on trips and fun.

David goes to tech school from 8-2 daily. He comes home and sleeps because he stays up most of the night. He gets an occasional parttime job, but has not worked a real job in quite a while. When he did, he spent all his income on himself. Because David has more free time, I feel especially used by him, plus I hate how he sleeps the days away.

I am dissatisfied with the condition of their bathroom and bedrooms, plus we feel used financially. I want more help with keeping the house clean and orderly, and I don't want to pay for everyone's cell phones and insurance anymore. I asked Mark if we could go to basic cable and disconnect the internet (that would be very difficult for me), but Mark said no, that he needs to go online once a week for about two hours for his business, and not to touch cable until after football season.

I'm pretty frustrated and my bank account is shrinking fast.