Tuesday, January 27, 2009

A little "up"date

Yesterday (Monday) we received a call saying that they had to take my dad into the operating room again. They removed the balloon pump and then did a bronchoscopy to suck out the extra fluid in his lungs.

We were under the impression that the pump was to stay in longer, so my sister and I took this operation as a not so good sign. However, the surgeon came in later and shook my hand twice (upon entering and leaving, a good sign of someone who is capable and courteous) and said he was doing okay.

We saw him and spent a few hours talking to him while he was heavily sedated. He did not open his eyes and I speculated on what he might actually retain as the three of us (mother and two daughters, one newly home from Iraq) were discussing.

We went to Applebee's after the hospital for dinner to assuage my sister's enjoyment and hunger at being around all sorts of food after 15 months of food at the DFAC (Dining Facility). She had a pomegranate martini, shrimp, steak, some mashed potatoes and some veggies. Then we were on our way home, to my mom's home which was where my car was parked.

I actually had PIP (pants on in public) which was very painful because I am still way too big for my pants. I stopped at Wal-Mart on the way home and purchased two more pair of sweat pants. Talk about comfy; I wish I had done this before.

I also made it to the post office yesterday to mail in my official request for my sick leave. This would take me out through April and then I would have to teach for the months of May and June.

Today I brought my car in for an oil change and an inspection, which it failed on a couple of things. Don't ask me what they are because I don't remember. All I know is that what I thought would be a one hour visit is turning into a five hour visit. I guess hitting the dog (bless his soul) and being hit by the truck hauler thingie didn't do my car any good.

Graciously, they offered to drop me off at my apartment so I could sleep and then they would come back and pick me up. They dropped me off and I remembered

I didn't have my KEYS! Doh!!!!!

So that meant I had to trudge through the snow and climb in through a window to get into my apartment. Which means I hurt myself in the process, something deep down in my back and right buttock are not happy campers. But I made it in, resourceful and overweight girl that I am. The good thing is that I was not PIP because I never would have made it in those pants!

My brother is home from Iraq as of this morning and at the hospital as I type. I haven't seen him yet nor have my mother or sister as he rented a car.

That's my little "up"date with some more positive things to report. Thanks for your comments and kind thoughts. I do read and appreciate them, even though I have neglected to tell you all that lately.

Hugs to you, Weebs

Sunday, January 25, 2009

The highs and the lows of Saturday

My father underwent surgery on Friday for a potential triple bypass. They were only able to do a double bypass due to the size of the vein they worked with during the surgery. I saw him after the surgery and he was on the ventilator and looked good.

On Saturday my sister arrived home from Iraq due to a Red Cross emergency leave. I made her a sign with my scrapbooking stuff that said "Welcome home from Iraq to my sister, my hero." Seeing her at the airport was the high point of the day. We hugged and cried and took some pics on her camera.

Then we went straight to the hospital from the airport. My dad was responsive the moment he heard my sister's voice. His eyes opened and he looked at all of us. We haven't seen my sister for 15 months so this was a nice surprise for him, I suspect. He was still on the ventilator so he could not speak but he tried to mouth words and he smiled. He could move his hands and feet and was supposed to come off the vent sometime that day.

My mom got a call later that evening saying he was still on the vent because he seemed to be bleeding out somewhere and needing more blood. I guess going off the vent would make his heart work too hard.

Later on the hospital called again and my father had gone into shock (because of the blood loss maybe?) and they said we should come right in. I had taken my night time meds and had about 90 minutes of sleep in me and was in no position to be able to drive so a friend picked me up and dropped me off at the hospital around midnight. My dad was in surgery again and they removed some blood clots and put in a balloon pump for his heart. I have no idea really what the purpose of the pump was because I was so tired I thought I was going to just fall down and listening to the surgeon was like listening to the buzz of bees.

He will need another surgery in a few days to get the pump out.

My brother is also supposed to be coming home from Iraq through a Red Cross leave.

Dad is completely sedated and did not wake up when my sister and mother went to visit him today. My mom told me not to go because I am so wiped out and I listened. I am exhausted and worried and I hope he sleeps peacefully through tonight and the next night and so on without any more complications.

I'm going to say the rosary which I never do and if prayer is your thing, I'd appreciate you remembering my family now.

Friday, January 23, 2009

More reality

Today my dad is having his second triple bypass surgery. The first one was done in 1993, which was fifteen years ago. I have to be up early and I am up already, just can't sleep. I'm hoping to fall back asleep here shortly.

My sister is coming home from Iraq Saturday or Sunday to be home for all of this. My brother is staying in Iraq.

The dealio is if you come home for an emergency, it counts against you during your R&R, or when you actually come back to the States. So this trip is counting against my sister's imminent arrival home which was scheduled for very soon anyway. She just now has a shorter amount of "free" time in which she doesn't have to be on post.

That's all I've got and why I've been quiet lately. Wishing everyone a good weekend, Weebs.

Monday, January 19, 2009

Interior and exterior

These are some thoughts from my other computer writings:

That’s what I have done all my life. Asked for love and often received dislike or anger or pain in return. Yet, I came back for more because now and then I would get comfort or love. It’s like food. I yearn for certain things, thinking that if I have it, I will feel better. I will feel comforted but that feeling only lasts for a short time.

I am forcing myself to wear my fat pants which are not loose. They are tight. I am bulging over the top and feel the fat around my middle and on my arms. It’s so uncomfortable but I need to start wearing real pants to remind myself of what it feels like. The shortest way to get past this is to go straight through it. There is no going around it, just the going through it.

It will not be easy, it will not be fun, it will not be about rewarding myself for breathing. I am thinking about pizza right now and I want it. I will most likely get it. I must learn though that I can eat real food and it will be there the next day if I don’t eat it all. It will be okay to not inhale and consume so much that it fills up the part of me that should be filled with happiness and not food.

That is what I do, fill myself up so as not to feel the sadness or loneliness or depression. I don’t find ways to bring happiness and joy and love in to my life. I just suppress the feelings with food.

**Wow, that's something to really think about.

Sunday, January 18, 2009

Random and reality

First the randomness, but a highly important bit of info. My wonderful pal AW, aka Abracadabra or Scrapbooking Queen Extraordinaire, ran in the Walt Disney World Marathon last weekend. She was nervous and worried before she went and I, trusty and helpful blogger genius that I am, told her what a great time she was going to have and how wonderful the experience would be.

I was completely correct and Abracadabra finished right on her finishing time goal and she did not have to potty or poo on the side of the well-groomed paths through the kingdom of Mickey Mouse. You went, girl!


Writing on my separate space seems to be helping me in the head area. I haven't written for a few days on there but maybe I will after being on here.

My dad was supposed to have his fourth heart cath to open a blocked artery on Tuesday but it couldn't be completed. Not so good news.

Then he had another heart attack on Saturday afternoon which necessitated his trip to the hospital by ambulance. This meant me driving over to my mom's house so we could drive out to the hospital together.

I don't live that far away but I was slowed down behind two snow plows, one plowing after the other. The last time I was driving to and fro their house I hit and killed a dog who just ran out into the road as I was coming around the curve. This time I was almost to my parents' home and this giant truck hauler thingie just pulled out in front of me. I couldn't stop in time on the snow so I he ran into me. I smacked my car near his back tires and I was stuck. I couldn't even go in reverse and thank goodness the person behind me didn't rear-end me.

The guy got out of the truck thingie and I put the window down and told him to check for damage. He said there were some scrape marks and I said I had to go, that I was on my way to the hospital. I was literally right around the corner from my parents' home.

I'm starting to sense a freakish pattern here and I am wondering if there is some message I am missing. Feel free to interpret it and let me know what it is.

Friday, January 16, 2009

New stuff, finally

Sorry that there hasn't been much to read on here for a whole week. I have started to do some free writing on the computer that is saved separately from this blog to try and get some really personal issues out. What follows is part of that, but it's mostly about food and pants after a bit of serious thinking.

How do you feel growing up never being trusted, being made fun of, doing all the wrong things, desperately wanting to be loved and yet ignored except as a servant girl? Maybe you don’t. Maybe that’s why I’m so small and so big at the same time. Maybe God made me small so there would eventually be a tipping point where I couldn’t be filled with hatred and anger and sadness and fear and depression anymore. Instead I grew bigger and wider, holding all those things in.

I’ve been to the grocery store and purchased some foods that are not on my Special K list and we’ll see if I can eat them in moderation. There is always tomorrow, there can always be more food tomorrow.

In a way at the grocery store I already felt a tiny bit better. I did not go nuts and load up my cart with tons of junk. I picked out a few things. I felt in control.

PIP = Pants in public

I have to also get eating, rather overeating/binging under control so I can wear my pants in public instead of sweat pants. Every pair of pants I own, including my fat pants, are too small. I take the various pants out of my closet and wear them at home for a while to get them to the point over a few days where they can be PIP. I still go outside in sweats but not my shorts that fit; three pairs of shorts fit me but not real pants and I live in a place where it starts to snow in October and keeps snowing sometimes in April. There shall be no shorts outside here.

So you see I am a busy gal here with the whole pants issue and trying to relieve myself of so many of the burdens I've ingested and now want to expel. Pretty graphic there in your head, huh?

Thanks for stopping by and have an awesome weekend.

Friday, January 9, 2009

Goodbye tree, hello sore arms

It's Friday but when you're not working, pretty much every day seems the same. Today is the day when BJM comes to help me put the tree away in its original box. We've got strong tape and one able body and another mostly able body to accomplish this task. I have the tree lights turned on as part of our last hurrah.

I woke up this morning with two sore arms and no real reason for it. I also had a temp of 100.2 when I checked it after my nap. My temp goes up and down all the time and I'm not sure why. It could be hormonal or it could just be some wacky symptom that may or may not have anything to do with MS. The arms I'll keep watch on because that may be something related to the MS. Or not. Ah, that MS is a sneaky thing.

I need to make some calls to my doctors next week for notes on the extended sick bank leave and I believe I will ask/beg for a script for some PT. My back and hips area just feel so tight and the muscles seem seized up. Even standing in the shower (on my new non-slip rubber mat) feels like it's pulling on those muscles. Standing up for a long time = a few minutes = some uncomfortableness and pain.

This takes the fun out of shopping which is why I don't do much of that. First, there's the getting in the car and driving somewhere that requires me to stay awake and alert. That's tough in itself. Then you need to get out and walk around which brings forth the previous issue. God forbid if you find something you want to but because then that means you have to carry it around with you which is also difficult. There's more walking and potentially more carrying and then one has to drive home.

Oh, and I like to look around while I drive because I am so easily distracted. I notice the weather, and decorations, and new houses, and signs, and people walking, and other cars and so on. I save a lot of money this way.

That's all I've got as BJM is on her way and the tree is in need of one last look of appreciation for its service.

Wednesday, January 7, 2009

The end of Christmas

I'm showing my MS symptoms here while I am trying to undecorate my Christmas tree. Standing for a few minutes and bending and holding those little tiny colored ornaments is killing me. Again, it's like a mini-marathon of activity. Do a little and then sit down for a while.

I have a friend coming over on Friday to help me take down and store the empty tree. She thinks it will fit back into its original box and she, being the same person who showed me that the oven door can come off, may just be correct. If it was just me I'd probably end up with it in the living room all year long so thank goodness for my friend, the Goddess of Cleaning, BJM.

I'm also trying to get my sick bank leave extended. That seems to be much easier to get an extension compared to the original request to use sick bank time. The crazy thing about it is that it's deja vu all over again. My dad had a nuclear stress test on Tuesday and the results weren't good. He has an artery completely blocked and needs surgery again. It is supposed to be scheduled for Monday of next week. This will be his fourth surgery in about 6 weeks, all on his heart.

In other news, I received a nice blog comment from Pitney Bowes who must have people scouring google to see where their name turns up. I mentioned a neat program that they were promoting called Holiday Mail for Heroes in early December. You could send cards to a certain address and the cards would be distributed to military personnel and vets all over the world. I sent in some cards left over from last Christmas and a few new ones from this year. I've already bought the clearance cards so I can participate in the program next year.

Here's the blog comment from Pitney Bowes:
Pitney Bowes has left a new comment on your post "Holiday Mail for Heroes, an easy way to help other...":

On behalf of everyone at Pitney Bowes and the American Red Cross, thank you for all of your support in helping to spread the word about the “Holiday Mail for Heroes” program.

We would like you to know that we’ve not only reached the goal of delivering one million cards to US service members, veterans and military families, but we surpassed it! And it’s all because people like you and your blog readers who got involved. View the following video for more details and a personal message of thanks from all of us: http://blip.tv/file/1643672/.

We could not have done it without you.

Tuesday, January 6, 2009

The roll of the MS dice

Lots of people ask me how I am doing on the Tysabri for my multiple sclerosis, which is a hard disease to type by the way. Tysabri is one of the newer meds for MS and is given once monthly via an I.V. method. The ease is great compared to other meds for MS that I have been on. Once a month I go to my infusion palace and sit in a comfy chair for two hours and watch the good cable TV. (Alas, for budgetary reasons I have the most basic of cable services at home which consists of about 16 channels. These include the major networks, a CNN, the E channel, the Style network, and a few different PBS channels for about eight dollars a month.)

The only down-side to Tysabri, for me, is that I have increased back pain and fatigue for the first few days after a treatment. Usually the next day or two after a treatment, I am laid out like the flu has hit me. There's also the drive there and back in the winter which is about 45 minutes or so. The price can be an obstacle for many people but my insurance has been covering the entire costs of both the medication and the infusion facility costs. I'm a little worried come January if the gravy train will still be rolling or if I will be paying some of it. I'm hesitant to venture that I'll be paying out of pocket for some of it but not the entire almost three thousand dollar EOB I get.

I have, in the past, taken an injectable medication once a day each day for about two years (Copaxone). I also took Rebif which is a thrice-weekly injectable after it was deemed that Copaxone was no longer my best "shot", pun meant there.

Tysabri doesn't cure MS or make your symptoms stop happening. People always ask how my symptoms are and some of them are the same, some of them have gone away. That's just the roll of the MS dice. Anecdotally, there are people who are finding some symptom relief as they continue on Tysabri. I knew some people who are up in the dose range of 25-28 infusions and they are doing well with no progression.

That's basically what Tysabri is supposed to do, stop progression and lessen flares. Its efficacy rates are about double what any of the injectable meds are putting out there. Then again, there are some people who find they are allergic to Tysabri and that takes it off their list. There is also a deadly disease called PML that you can get from taking Tysabri. Recently, an American patient contracted PML and died.

For some people Tysabri isn't what they want or need. There are lots of other options to try before Tysabri and some people don't use any meds at all. I prefer, personally, to use everything in my arsenal to keep me upright and moving around to the best of my ability. Some days that ability is better than others.

For example, I just took two bags of recyclables to the containers outside of my building. Neither bag was heavy but I had to climb up the stairs in my building to the main door, then I went out the door and down the stairs to the ground, and walked past a few buildings to the garbage area. I was breathing hard on the walk over and on the way back my own back was all out of sorts. By the time I got inside I was sweating and had to put shorts on and sit in front of the fan to cool myself down.

That's a problem I have all the time. Walking and trying to carry things really tuckers me out. It doesn't matter how light something is, it becomes like a marathon. That's why I try and walk with the Walk Away The Pounds DVD a few times a week. I am trying to also get myself to go from playing the Wii sports to using my Wii fit as soon as my Christmas tree leaves, which should be sometime soon thanks to BJM. I'm trying to build up my strength slowly while taking care of my legs and my back/hips. I'm a big girl so I have to move and lose the weight however I can, no matter how long it takes.

My goal is to be fit and as strong as I can be by the time I am 40, despite MS. I turned 38 in September and I have a lot of weight to lose. I'm tired of being the fun one with the pretty face. I want to be able to fit into my pants and then have them be too big so I can buy smaller pants and then repeat the cycle. I have to battle the daily, constant fatigue and weakness in my legs and back/hips but I can't let that stop me.

Just as I have symptoms that change, I need to do what I can to make my body the healthiest it can be. That takes time for all of us whether we have MS or not. As an aside, my infusion palace has shown some anecdotal evidence of their patients starting to not have as much as fatigue around treatment number eight. I just finished Tysabri treatment number four and I am hoping that I will see that change. I know it's not what Tysabri is supposed to do but I am hoping for my own mini medical miracle because fatigue is my biggest problem symptom.

Wishing you health and happiness in this new year,
Weeble Girl

Friday, January 2, 2009

Big days

Yesterday was a big day in my world, as big days go. I had two, count 'em two, appointments that day to deal with health issues. The first appointment was at 9:30 with my therapist which was good. I had some stuff I needed to talk about, family stuff that has been brought to the forefront of my mind recently.

Then I drove for about 45 minutes to go to appointment number two which was my Tysabri tune-up at 11:30. Time for my monthly infusion of liquid gold. The appointment went well and quickly except my IV machine started beeping twice for no reason which is annoying especially when the nurses are trying to eat their lunches.

Next I went to Barnes and Noble to purchase some tomes for me and a card for the people whose dog I hit on New year's Day on the way home from my parents' house. I bought the book Dewey about the cat who lived in a library in Iowa after being dumped in the book return slot in the middle of the freezing winter. I saw the story on the Sunday CBS morning show a few weeks back and now Dewey is a hit even though he has gone to the big shelves in the sky.

The poor dog was in the other lane and trotting into mine with no particular fear of large vehicles moving at a rapid velocity. There was a truck approaching in the other lane and I was trying to slow down from my 55 mph to avoid the dog. He didn't move, just stood there and there was that sickening thump as I hit him head on and he went twirling over into the snowbank.

I drove a few houses up to where there was someone outside and asked him if he knew who owned a white dog. He didn't and I called my parents to ask them what to do. They said to call the sheriff's department and report it as a non-emergency.

As I was about ready to leave the man's driveway, I could see two trucks back where the dog was hit. I turned around and drove back down and met the owner and another good Samaritan. I explained the situation to the owner who was very nice to me and not mean at all. I thought, more like feared, that he would be yelling at me or cussing me out but no dice. The dog had bit his owner as he was now in shock and pain.

We stood out there about 20 minutes in the frigid cold trying to get the dog back into the truck to go to the emergency vet's office. I took the owner's name and number and told him I would call him back the next day, which was Friday.

I didn't sleep well and woke up very early on Friday, too early to call. I eventually fell back asleep and when I called they reported the dog had to be put down because his spinal card was broken. I felt like crap.

That brings me to the pet sympathy card and I wrote a $75 check to help them with the emergency expenses. My friends said that was generous but I felt so bad about the dog. His owner had let him off his lead back out behind their house to run and romp and he couldn't get him back on the lead. The dog headed to the road where he indeed had no fear of cars. Apparently there was honking from other cars before I came around the corner and inevitably ran into him.

I'm so sorry, Comet. I wish that hadn't happened to you.