Christmas Memories

Christmas used to be my favorite time of year. I grew up in a small Pennsylvania town and we had those idyllic snowy Christmases. On the Friday night after Thanksgiving, we would go out for dinner at Papa's, a little family owned Italian place, and then go get our tree. It was usually snowing so dad put the tree in the garage so the snow could melt off and the branches could fall. The Saturday after Thanksgiving was our official Christmas decorating day. We would decorate the tree and the house all day as we reminisced about Christmases past. We always included the dog in the decorating and she usually ended up wearing one of the strings of light. At the end of the day when the stockings were hung over the fireplace the tree was lit and mom's Christmas village was all lit up in the front bay window, we would roast hot dogs in the fireplace, put in a Christmas movie, light the candles and enjoy the fruits of our labor.

My dad was a banker and worked in the trust department so during the holidays, many goodies were delivered all through the month of December. Shopping was also a delight as malls were an hour away and our town still had many merchants that carried nice things. There is something about walking the downtown of a small town in the snow with all the Christmas lights. Our town put Christmas lights on all the light poles and it was so quaint. Plus seeing everyone we knew, and as Corny as it sounds, we were all in good cheer.

We also had an official baking day that literally went all day. Of course we had our favorites and every year we tried one new recipe. If we were lucky, we had the snow falling outside, Christmas carols playing inside and the smell of all the wonderful cookies and fudge and Cinnamon rolls. The Cinnamon rolls was my grandmothers recipe and my dad has always loved the dough so we always saved him the raw dough ends bathed in butter, Cinnamon and sugar for when he got home.

My grandparents lived an hour away and the weekend before Christmas, we headed over there for our family Christmas. There were my grandparents of course and my grandmothers 2 sisters and 1 brother and their family, although one of her sisters and their family stopped coming so they could go to the other family.
Then it was my folks and me, my one aunt and uncle and 2 cousins and my other aunt. After munching on goodies, we would open presents, and hound my poor great aunt to death as she was a yard sale addict. I think she was relieved when I brought my husband, then fiance, so the family had someone else to pick on. After presents there was dinner, if we could find some of the guys who snuck away to watch football even though my grandmother forbade it. Then with dinner over and all the extended family gone, we all waited with bated breath as my grandfather gave my grandmother her gift, which was some exquisite piece of jewelry. Then we would watch slides of our family and my grandparents recent travels. They loved to travel and went to many countries, Japan, China, Australia, as well as Alaska and their yearly trip to St. Barts.

Christmas Eve and Christmas Day was just my folks and me. Some years my mom's folks would come and then of course my husband once we got together. My dad would head into work until meeting us for breakfast before heading back for a short day and my mom and I headed for the grocery store. We had many things still to make and spent the late morning early afternoon doing just that. We prepared h'ordervies for that afternoon once my dad got home, he usually saved his Christmas shopping for Christmas Eve(actually he had already chosen what he wanted, he just had to pick them up). Then the rest of the afternoon was for leftover wrapping or whatever. Then for our Christmas Eve dinner, we would fondue. Then we would watch A Christmas Carol and head to bed.

Christmas Day was more layed back. We got up somewhat leisurely and then had breakfast. We have one of the best recipes for coffee cake. Then we'd open presents and more h'orderves and then finally a wonderful prime rib for dinner.

I have always cherished all of our holiday traditions even though many we no longer can do. Once my husband and I moved to Florida, we discovered Christmas down here was quite different. I got so depressed about it our first couple of years here we both volunteered to work and then we went to the beach. We couldn't go home for Christmas and we were new in our jobs and they were service oriented and that meant open on the holidays.

When we finally were in jobs where we could take time off during the holidays we went back up to PA and did as many as the traditions as we had time for. It was wonderful after having a few years apart. There were a few years where my parents were down here as well and we did all the same stuff just without the cold weather and it was just as nice. Snow would have been nice, but the most important part was being with family.

Everything changed when my folks moved permanently to Florida and in the same month we moved to Alabama(That's a whole nother blog). In Alabama we had colder weather and I had a fireplace again which I loved, but as this was when I began to get very sick and with my husbands new job, we couldn't travel. So we were alone our 2 Christmas's there. Andy and I did all the traditions and it was nice, but it was very lonely.

When we moved back to Florida about an hour from my folks we were hoping to have those traditions back, but with both my mother's and my health so bad, it was impossible. To be honest the last 4 years I would have just rather of not celebrated. We were able to get together but only for about 4 hours each Christmas. Out of necessity we had to scale back and only exchanged a few gifts and had a quick dinner if that. Last year I was unable to stay for dinner as my mom had just gotten out of rehab and I had been driving down constantly to be with her while my dad went to work.

My disease takes so much and I've come to accept the majority of limitations, but I do resent the Holidays. My 2 Aunts and their families still all get together the day after Christmas for a family Christmas and it's in South Carolina. If I was well, we would be able to go. It wouldn't be the same, but it would be family. We have asked them to come down here instead, but that hasn't worked out. I have had hurt feelings about that, but I try to remember that they are trying not to add extra burdens on us. But it still hurts.

This year my folks did come to my home for the second time since we've lived here and the first time in 3 years. I was really happy that they could make it. We had a really nice afternoon. It was shorter than I would have liked, but unfortunately that is all we can do right now.

My dream is to have a Christmas at Rockmere one year. I would love to have all the family come. It would be a lot of work, but I think it would be worth it. Andy and I have said if we buy Boxer's Pause(we've named a cottage that we want to buy at rockmere)that we will go up for some Christmas's.

I try to be grateful that we had those wonderful holidays and even if I never get another one like it, we have those memories, but it is really hard seeing all the family commercials and when you're out and about hearing people talk about their holiday plans. But at least I had those experiences as some never do.

Melissa

The Holidays Are Here

It has been awhile since last post, but our trip really wore me out. I would still go in a heartbeat, but it does take a lot out of me. My husband said something about not going anymore, but as I can go down without doing anything, I'd rather have done something and have the memories from it. Actually next year the Bucs are going to London and we are thinking of going there for the game. Our neighbors mentioned they'd like to go and that would be fun to go together.



I have been feeling a little down lately as the year comes to a close. With it being 2009, that makes it 8 years that I have been this ill. Out of those 8, half of them being pretty bad. But it boggles my mind that I have been out of work and sick almost 10 years. I know I have been sick for 20 years, but the first 10 I was still working and had a life. I just don't know where the time went. I kind of compare it to the glorious 11 years we had when we first came to Florida and our lives were so full. It's going to kill me when I have been sick longer than those 11 years. I just keep clinging to the hope that I will get it back. When God takes away, he usually gives back more than we could have ever expected and I stand on that happening to me. I get so homesick for Bradenton and think maybe the reason we haven't been able to move back is that God is saving that for when I am better and we can move home and have a better life. It's not that I am not grateful for the life we have now. I wouldn't change many things, but I miss the life we used to have.



My husband was feeling guilty about not doing charity work and contacted Boxer Rescue whom we volunteer with when we can and thought he was signing up for non-fostering activities. Well they called us the other day and want us to take in 2 dogs who are brothers and need a foster home desparately. We have our 3 and adding 2 more with my health would be a huge responsibility, but the point of mentioning that is we started talking about when we move back home we would like to have more property so we could take on more fosters and they would have the room they need to exercise. I would love to be able to take on all the dogs that they cannot get into foster homes and if I ever get healed, we've thought about making that a big part of our lives. But for now, I have to live this life and try to keep looking forward and praying that this isn't all there is going to be. It's always a struggle with accepting it but yet hoping for better. If in conversation I mentioned not being able to do something in the future because of my illness, my husband would say you never know, you may be healed tomorrow. I'd always laugh and say you never know. He'd then ask if I beleived I could be and I'd say absolutely, but I needed to be prepared if I wasn't. Yes it will be great if it happens, but I have to emotionally understand that I might not be and deal with it if I am not. It gets very complicated.



We don't have our tree up yet, but will probably do it this weekend if I feel up to it. To be honest I'd rather not but know I'd be disappointed if we didn't. I used to love decorating EVERYTHING for Christmas. We always did it up big. Decorating day was as much a tradition as Christmas and Christmas Eve as well as baking day. Now we only put up the tree and 1 candle and that's it. I will probably bake a little, but no where like I used to. I would send a big batch of holiday treats to my husbands work as well as mine and they would be gone in an hour. That made me feel good!

Well the most important thing about the holidays is getting together with family so I really hope my folks can make it!

Merry Christmas!
Melissa

Well, that trip was well worth the wait. We has such a great time, I want to do that every weekend! When we got to the airport we found out our flight was cancelled and they were able to put us on a later flight so we had over 2 hours to wait. We got something to eat and then I remembered the American Express commercial where if you had an Am Ex business card you got access to the Crown rooms. So we go up and got access and boy is that the way to go. Instead of sitting with tons of people in those uncomfortable seats for hours, we were sitting in a big room in overstuffed chairs, I took my shoes off and curled up with my book while my husband got us free drinks and snacks. We stayed there until our flight. We got into Atlanta and went straight to the crown room and sat in front of a big screen TV to watch the football game. Then we got on our last flight and got into Kansas City with no problem. For the first time ever, someone was holding up a sign with our name on it as we exited the plane. The driver went to get the car and we proceeded to the luggage retrieval. Our bags were the last ones off the plane and I am not kidding.

We got to the room and had a little snafu as when I make reservations, I always make it a king size bed and we had 2 queens. When the bell hop called down it turned out my husband made the reservations with Travelocity so he got a bargain rate and we got a bargain room. It was very small compared to last year, but it still was very nice, so I wasn't going to complain. Fortunately for us room service was 24 hours and then we both crashed after showers and dinner.

We had a nice breakfast after I discovered I had brought the wrong pair of jeans and had to improvise(which I did no problem!) and then off we went to the World War I Memorial. It was across the street, but it was across the street and then 150 steps UP! By the time we got to the top and saw that a taxi could have brought me right around to the back(where we were supposed to come in). I was sweating like crazy and had to almost take a PTA bath in the restroom.

The museum was fabulous! It started out with a 15 minute film and then you followed it around in chronological order and it had another short film and many other exhibits.We couldn't stay long as the hotel had messed up my massage appointment instead of it being at 3, it was 1pm so I had to get back. We thought having a massage would help my pain but I don't think the people who work in the hotels are very good so I am going to stop doing that. I am so spoiled as the girl who does my massages here is excellent.

We took a nap after the massage and watched some college football before we had to get ready to go. We had dinner at a restaurant in Union Station called the Pierpont and it was delicious! It was one of the best dinners we have had in a long time. Then we went to see the Lion King. We got box seats and that is the way to go, best seats in the house. We had so much fun, we both really enjoyed it. I want to do it again.

Sunday we got up early to get to the stadium by 9:30. We had brunch which was also delicious and then went and found our seats. I was so excited as we were in the shade the whole game. We walked around to say hi to Doug and then settled in for the game. We sat next to a nice couple as well as others in the area and we had fun razzing each other. For most of the game it was them razzing us and we thought after being behind 21 points and having 2 turnovers in the first 6 minutes of the game that it was going to be a long day for us. At one point we were ready to leave and then we got a touchdown so we stayed and it's a good thing as we came back to win! We tried to be nice and not rub it in.

We went back to the hotel and took another nap and then got up at 8pm to have dinner at the Sky Restaurant. It's on top of the Hilton and it rotates all night so you can see the whole city. Again the food was to die for and we ended our trip on a high note.

Good thing too because coming home became one issue after another. To start I was really tired, hurting and not feeling myself. My husband and I got into a fight on the way to the airport and it lasted till we boarded the plane. In the span of a second, I went from feeling fine to as sick as a dog. Our first flight was 2 hours and I spent every second willing myself not to get sick. I almost had to ask the stewardess to allow me to lay down in the 3 chairs and move the people elsewhere. I kept thinking just hang on until I can get a ginger ale and when they finally got back to where we were sitting and they said they no longer carry ginger ale. They carried it on Friday, but not on Monday. I couldn't believe it! I didn't need it Friday and they had lots, when I really needed it, too bad so sad. So for the rest of the flight I continued to will myself not to puke and then finally near the end of the flight started to feel somewhat better.

We get off and my husband has already scoped out the crown room so I can lie down. We go in and give them the card and guess what? We have a BIG head on the front of the American Express card and they only accept the cards that have the small head on them. YOU HAVE GOT TO BE KIDDING ME!! Isn't one business card the same as the next?! Apparently not. So again, when I didn't need it, we got access and when I desperately needed it, no go. OK, I'm feeling better so we got some soup and waited for our final flight. We got into Tampa, got our luggage and car and off to home we go. I am starting to not feel well again and as we are about 2 minutes away I tell him I need to run into the house and use the restroom. So we pull up, open the door and I run to open the door and IT'S LOCKED!!! WHO THE &#$$ LOCKED THE INSIDE DOOR, WE NEVER DO!!! I am now doubled over ill and we knock on the door of our next door neighbors whose daughter let the dogs out earlier that day and for some unknown reason LOCKED THE G%$DA%# DOOR!! And of course my husband has no key as he uses his garage opener and I didn't take my keys as we left my car at home. I am still doubled over and beg to use their restroom as my husband goes and figures out how to break into our own home.

I take care of business and try to make it sound like I am mad at my husband for not having a key, instead of her and she doesn't even apologize! So I find my husband in the garage trying to call the 3 people who have our house key and 2 of the 3 live in different towns and the 3rd is at work and doesn't answer her cell. So we figure the easiest expendable window is the sliding glass door and get it open in about 5 seconds with no damage. Good for us to know in case we need to break in again, bad to know how easy it is for bad guys to break in.

The first thing I told my husband to do was get a key on his chain and the second thing was to get a better lock on the sliders. I went to bed to rest and haven't moved, just kidding although I have been resting.

Tomorrow I have an appointment with my oncologist so he can tell me both areas are basal cell cancer and I'll have to have more surgery. He should be able to do it in his office.

Well I am so grateful our trip lived up to it's expectations. We spent a great deal of time and effort hoping this trip would be worth it and it so was. Next trip we'll just pay for a day pass for those crown rooms as $450.00 is a lot for 1 trip a year. Plus I am going to see if I can earn travel miles so we could up-grade to first class. We'll see if I can, if not no big deal, but it would be nice. We have another scrap book to add to the collection. I need to get one ready for the Superbowl too!!!

Good night(or I should say good morning)
Melissa

Today has been a very bad pain day. I don't know why, but my pain hasn't been this bad in years. I usually hang out anywhere from a 3 to a 7 on a usual bad day, but this was close to a 9. I had a hair appointment today that I absolutely had to go to as we are flying out this Friday and I found out the girl who usually does me has left so they put me with someone else. She was really good, but I was there for 3 hours and I had forgotten to take any pain medication with me and sitting that long kills me. By the time I got home I got one of my meds, put my creme on one of my trigger points and layed down. I was done for the rest of the day. In fact it's 2:30 in the morning and I am still up with the pain. I knew last week I was going into a flaire but I was hoping it wasn't going to be a bad one. Especially with us going away. But I don't think I am going to luck out. I really want to enjoy this trip so I am praying that I will at least feel somewhat OK.

We have someone house sitting which eases my mind with the dogs. This way I don't worry as much and she has house sat before so I am very comfortable with her.

We still don't know where we are sitting for the Superbowl, but they charged our card do we should get our tickets soon. I still can't believe we are going! Well I am going to go and try to get some sleep, I am going see my mom tomorrow and even though it's only about 40 minutes away, it's hard on a good day let alone how I am feeling now.

Good Night
Melissa

Losing one of beloved

I haven't been around in awhile, a lot going on, so I will get you caught up. The most important news is that we had to put down our 12 year old. I swear, it is so hard, you almost want to say you will never have another dog again because doing that hurts so much. But, we have always said the joy we get from them and the long time we have with them out-weighs the bad. We have also said we never want them to suffer and that's where we were with her. It's the first time we have actually made the decision. With our other two, the time was picked for us, they were in a crisis state and we had no choice. This time it could have been any time, but she really wasn't doing well at all, but that doesn't make it any better. Even though it would have been awful to find her, I many times wished she could have gone in her sleep, peacefully.

I have been trying to figure out how the other dogs are taking it. Chrissy has been cuddling with me more, but she does that when I don't feel good and I haven't all week. Max has been off hiding in corners and we hope he doesn't think we got rid of Monica and he's next. Daisha has been getting into trouble looking for attention and we figure they are all reacting to what's happened. I hope they are going to be OK when we leave next weekend, but since we have someone staying at the house the whole time I think they will be OK.

So we have had a rough week. We did it on Monday. I hope now after having to give Gracie away, and losing Tess and Monica, that we are good to go for a long while with our other 3. Our next oldest is 71/2 and then 4 and then 2. I do not want to have to go through that again for awhile God willing!

We got a bit of good new this week, WE GOT SUPERBOWL TICKETS!! I couldn't believe it! Months ago, Andy enrolled us in the raffle that they give for the 1% of tickets that are available to the public. It's like winning the lottery which is what we did for tickets. What makes it special is that the superbowl is going to be here in Tampa so we will be able to enjoy all the pre superbowl stuff that happens that week.

We leave next week for our away game and we are getting so excited. We got to see the lion king and we're going to some nice restaurants. If it's as half as nice as our Atlanta trip it will be great.

I have had some excitement with my health, first off my thyroid was way off, so we doubled up on the meds there and hopefully that will help. Something has got to help with the weight I have gained, I am at the top of any kind of accepting and I really don't like it, but I am trying not to freak. My pictures look horrible and I need to lose some of it, I feel like I am gaining every day and I don't understand why.

The other thing was my vitamin D was low and the doc sent me a script for 50,000iu's of it and she could have ultimately killed me. The last thing I need to do with sarc is take vitamin D. She could have thrown me into a horrendous flaire. Needless to say, I am looking for another doctor. I had been wanting to anyway as I didn't think we were on the same page, so this just made me do it right away.

There were other things I wanted to vent about, but they will have to wait another day as I am tired.

Good Night
Melissa

A Very Bad Day

I am very cranky today. It has been a very emotional day and I cried and I've already stated how I feel about that, so I have a horrible headache, I've had a fight with my husband, I got some frustrating medical news and I am EXTREMELY cranky. So please forgive me ahead of time for being direct.

If I hear one more person say to me that their doctor got them hooked on pain meds I am going to scream. Where was the gun to their heads making them take more meds than directed. I am sorry and I know addiction is a disease, but there is only one person to blame and that is the addicts. There are compassionate doctors out there that know that the only thing available to give a patient a remotely "normal and productive" life is with pain meds. More often is the case that the DEA has made it so difficult for a patient that suffers from chronic or intractable pain to get anything, let alone an adequate amount of pain meds, to properly manage their pain. So many doctors have stopped prescribing pain meds instead deferring to pain management docs so they can have nothing to with it. I love it when I hear that a person's doc denied giving them pain meds because they said they couldn't prescribe pain meds anymore. That is a lie to get out of prescribing. Yes their have been a few docs who have lost their prescribing privileges, but if they are still practicing medicine and they prescribe other meds like diabetes meds, blood pressure meds etc., they can prescribe narcotics.

The hoops pain patients have to jump through in order to get pain meds is ridiculous, and this is all thanks to the people who have abused the system, the docs and whoever else in order to get high. As a ill and disabled person, it is difficult for many chronic and intractable pain patients to go out. Most of us used to be able to go to their pain doc for follow-up appointments once every 3 months if they was stable on what they was taking which for most people was most of the time. Now thanks to the current situation, we must go every month. In order to be put on these meds, we must sign pain contracts which depending on the doc can have numerable rules such as not getting pain meds from any other doc, agreeing to surprise urine tests, pill counts, some have rules about a patient not allowed to go to the ER if they are going for the issue their pain doc is. We must go to the same pharmacist every time, and if they have forgotten to order my meds, I have 2 choices, go without until the order comes in, or if they have some of the med, they can do a partial fill. The problem with that is if they do a partial fill, I cannot get the rest of the medication. That is the law. Some pharmacist still do partial refills and then give the rest when it comes in, but many others do not. Some pharmacies have decided not to keep these kind of meds in stock so if this is your first prescription or your doc changes your med or dose, it can be difficult to find a pharmacy. Again, some docs only give 30 day supplies and you cannot get your refill until you are completely out. In those cases, you are SOL if for whatever reason you cannot go that very day. What if there is a hurricane or something? I live in Florida, so that is a legitimate concern.

By being on pain meds, we have the privilege of being treated like a drug seeker from other docs, pa's, nurses, office staff, pharmacists and pharm.techs. If we have to go to the emergency room for anything that is painful, we can almost predict that once they see the meds we take they will automatically assume we are drug seeking and anything else we say from that point on is in one ear and out the other. With my illness, I get chronic kidney stones and years ago my husband was working and I went to the ER by myself with a stone. I was in agony and watched them call everyone else in but me, I knew something was up when they called the kid with a cut on his finger in before me. Not only was I in horrendous pain, but hurt from being treated that way(to be fair, I have also had excellent care from hospitals).

If we drive and are in an accident, we can be charged with dui, although most of us drive better with our pain under control. If anything there should be a DWIP or driving while in pain. If you doubt me, the next time you have a migraine, or kidney stone or are in active labor, get behind the wheel and see how well you can concentrate. I AM NOT ADVOCATING THIS, IT WAS SAID TO MAKE A POINT!

If you are on pain meds, don't plan on going on vacation, or make sure you plan on working around your meds. Most insurance companies allow early refills once or twice a year for vacations. If you are on a schedule II, that may not be the case. Many insurance's do not allow that for schedule II narcotics and plan on being an expert in math if you still want to go because there is a formula they use to figure how many meds they can give you ahead of your scheduled refill.

I have probably missed a bunch, but you get the gist. Try pulling this on patients who get other type of meds and you would have a revolt. But to get the meds we need to live a somewhat productive life, we do these things. What we don't need is addicts making this process anymore difficult than it already is. And to blame the doc for your addiction is tantamount to blaming the credit card companies for your debt, when you were the one charging them up. Yes we get a tolerance to the meds and will need a taper plan when or if the time ever came to stop taking them, but many meds that are not narcotic need a taper plan to come off of them and it's not an issue because you are not mentally addicted. If someone is freaking about coming off of a pain med, they are addicted. Most of us take them because we HAVE to and dream of the day to not need them anymore. Unfortunately many of us will have to be on them for the rest of our lives.

We need more compassionate doctors who are not afraid to treat pain just as aggressively as they treat other disorders. Pain meds by their nature must be respected and followed diligently, but for so many people they are a safe and effective way to manage otherwise debilitating 24/7 pain. The only person to blame when someone gets addicted is that person. And until they can acknowledge that, they will continue to struggle with their addiction. I know it's so much easier to blame everyone else for our problems, but as the saying goes"when you are pointing the finger at someone else, there is 3 more pointing back at you. I know addicts destroy their own lives as well as their families, but it has so much more far reaching consequences than that. If they cannot quit for their families, how can I ask them to stop for someone they have never met? But I have to try.

Sorry to rant. I got some health news today that as usual is confusing with no clear cut answer. I will elaborate more when I know more, but the more time goes by, the more areas this disease invades. When or where does it end? Hhhmmn, I might not want to know the answer to that!

Good night!
Melissa

A Doctors Visit

I was reading an article today about how you have 22 seconds to speak with your doctor before he interrupts you. The article goes on to say that it us the patients who must figure a way to bridge the communication gap. Why? Why must I who is sick and dealing with all the issues that entails, be the one who has to figure a better way to communicate? Why, when the doctor is hired by me, ME! I think it is way past the time for us to let go of this God complex we have given doctors. If you read all the current info these days on the shape of our medical system, important results are missed, mistakes are made and your lucky if your doc remembers you. I remember a few years ago I had a HMO primary care physician who introduced himself for 6 consecutive visits in about a 2 month time span. I'd just seen him for pete's sake. I won't even get started on hospitals which after coming out of the operating room for a kidney stone, was mistaken for a patient who had an organ transplant. Of course I'm ecstatic that the mix up was after and not before the operation, although I'd be wealthy by now!!

As someone who unfortunately has been spending so much of my time at doctor's offices, I've been seeing how messed up things have gotten. If I was healthy and only saw my doc for the pleasure of getting felt up for my breast exam and sticking my feet in the stirrups, who cares if they know my name. As long as the test come back fine, see ya next year. I no longer have that luxury and as my life has now come to depend on doctors, labs, tests and procedures, I'd really appreciate that they were done accurately and that maybe after being seen every month for a year, that they'd remember my damn name!

I went in today for what I thought was to get my stitches out and go over my path reports. Instead I dragged my self out of bed(nauseous as my chemo was raised this week), drove 27 miles, waited in the waiting room for 45 minutes, stood in the valet parking for 20 minutes as they lost my keys, all for the privilege of 1 minute with the doc who didn't even know what surgery he had done on me and telling me the stitches will fall out on their own. If I would have known that, I didn't need to go through that. My incision is healing cleanly, no infection so they could have told me that over the phone and I could have saved myself all the aggravation.

Now, there are those docs out there that went into the field for reasons other than playing God and money and I am very lucky to have a few of them on my team. Unfortunately my situation dictates that I haven't always been able to pick some of the docs that have been asked to consult. I have rejected a few that were so obnoxious that you couldn't pay me to go back, but there is only so much you can do before getting the reputation as a "difficult or non-compliant" patient. I have been called non-compliant a few times and I hold that title proudly as I prefer to call it "I have a brain and will not blindly do everything you say". They see it a little differently. Hey, I gotta get my fun in where I can.

We love in a time where we need to be the one in charge of our medical information and stay on top of things and ask questions when things don't make sense. To expect that those in the medical profession will catch anything wrong is sticking your head in the sand. I prefer to be non-compliant and alive.

Take care
Melissa

It's That Time Again

I just love this time of year. I love Florida and I have always said I am a native at heart, but I miss a few things about living up north. One of them is fall. There is nothing like taking a walk on a beautiful autumn day with the leaves changing and the smell in the air. I miss going to a football game on a crisp afternoon wearing a sweater and drinking a cup of cocoa.

But the event I love most about this time of year and unfortunately it only happens every four years, is the presidential election. I adore all the political ads where the candidates trash each other. I love how everyone adds those attractive support signs in their yard and the bumpers for the cars. And of course my absolute favorite part of this whole process is when they cancel all my favorite shows for the debates!

Seriously, hopefully you all were watching the debates this evening and plan on watching the upcoming ones. I personally find it difficult to follow because you do not know who is telling the truth without having the benefit of all their past voting records on all the issues. Senator Biden says Obama did not vote for something or other and Governor Palin says he did and vice versa. How are we supposed to know what's correct unless we have time to research every bill and issue covered in their careers. Now I may be disabled and not working, but who has that kind of time or interest? I guess it might help if you have insomnia.

What's even better is watching all these celebrities that think they know politics making all these off the wall comments and people actually believe they know what they are talking about. That's not saying much as these are the same people that think celebrities lives are in order and elevate them as role models when their lives are more messed up than the majority of ours. Yeah like I'm going to heed to Whoopi Goldberg's or Matt Damon's opinions.

Thank goodness it's almost over and we will get to live with our decisions and see if we were right. Exciting times we live in!

Good Night
Melissa

Medical Shenanigans

Mondays are so nice when all your teams have won over the weekend. Number 6 and moving up, and hope full will continue to do well. Even the commentators are starting to talk about Penn State as a potential number 1 if they continue to play like they are. And boy, did the Bucs pull it together. It didn't look good at first, but they did it!

I have had so many medical things lately and was hoping they were coming to an end for awhile, but all I have to do is go to one doctors appointment and then I'm scheduled for a whole bunch of tests etc. I now have to have a cat scan to see what's up with my chest and arm. I know it's better to know, but one test almost always leads to more test or surgery or something. They're already talking about possible biopsies. Plus I got a new diagnosis, hypermobility syndrome. It really just kinds of explains somethings. My chemo has been increased if I can tolerate it. I hope it won't be a problem as we are trying to get out of town at the end of the month. We are going to the Kansas City vs Tampa game. I can't wait as it should be fun.

I'm working on putting my medical records together in a book I bought. I have almost all my records in a notebook I made but these notebooks are together in a way you can present info to the docs in a organized way. The problem I am having now is paying for them. Some places charge a dollar a page which is ridiculous. Those records are mine and I should have free access to them at any and all times. My doc today agreed and he tried to print them for me but the system wouldn't let me so he said to ask the nurse and she told me that according to HIPPA, she couldn't print them and I had to get them from medical records. People have told me to have them sent from one doc to another, but the problem with that is i will still have to pay one of the docs for those sent records so that doesn't help me. This is now my new project as my records from my last two hospital visits will cost me over 400.00. I'm sorry, and that is just from my last two. If I had to pay for all my records it would be over 1000.00. At least it should keep me busy.

Good Night!
Melissa

Exercise Blues

Ok, besides the fact that I think I killed myself, I'm hoping Penn State gets their act together. I might be panicking prematurely, but as a Buc fan I must be predisposed to it. They are only down one touchdown, so....

Today I had my appointment with my primary and what a waste of time. She and I do not click at all and in my opinion she is as cold as a dead fish. She could have cared less that the anti-depressant she put me on last time had me gain 10 pounds and lose the small sex drive I had left. I am not the everyday patient who goes to the doc every couple of years. I have been entrenched in the medical system for years and at the point I am at now is to give me a quality of life. I am way passed the stage of running to the doc for a urine test because I think I have an infection, but the doc won't do anything until I run to the office. Because I KNOW if I have an infection, I always have antibiotics and a prescription to numb the bladder on hand. The only thing that will get me running to the doc for a urinary issue is when I'm peeing blood(and I do that quite often).

When my disease first started to really grab hold, I would wake up in a panic because I couldn't breathe. My doc then new it was related to my lungs being affected and gave me something to calm my nerves. Lately I am doing the same in addition I keep dreaming I am drowning or trying to breathe under water. I told her this in addition to my post traumatic stress issues and she literally just looked at me and then said I should go get a sleep study because I might have sleep apnea. Well first off, I hardly sleep(which she also could care less about, had no recommendations), second I am only 37 and am only about 30 pounds overweight(although I would love to lose 40, but I doubt I could sustain that weight loss) not 130. I do not have sleep apnea. I have anxiety issues related to breathing because I have only 2 out of 5 lobes working right and medical procedures because I have had some horrible experiences! Quality of life and minimizing my suffering is my focus right now and I do not believe she and I are on the same page. So the fun of looking for a new doc begins.

Andy and I have decided the best way to go about that is to interview the docs(with my clothes on by the way. Seriously who meets someone for the first time wearing those ridiculous little gowns. I have probably flashed half the population of Florida by now) and telling them what we need and are looking for and see if they are comfortable taking me on. I wish I could just use my specialists, but they do not want to do general stuff.

If anyone cares, we're tied at 14. I don't think I like Illinois. After coming back from the docs this morning we went in the pool with the dogs. The only one who will swim is chrissy. We have a half inflated basketball(so she can get a grip on the ball)that is HER toy. She will not let any of the other dogs play with it and she has it at all times. We through it into the pool and she'll jump right in. She almost jumped all the way across the pool today(our pool is in a figure eight shape). I about died, she almost hit her face and head. We decided we are going to cremate her with the ball.

Max will sit on the top step, but no further and none of the other dogs will go in. Although when we take them to the river, they all love to go in there. I think it's because they can gradually walk in.

Did I mention I just about killed myself today? After seeing those pictures, I really wanted to make an effort to exercise so around three, I went out and got on our elliptical that we keep in the garage. We used to have it on the lanai so you could watch tv while working out and have such a pretty view, but we put in a hammock instead(we figured the hammock would get more use). The hammock looks really good out there, we've tried hard to make our back area a nice little tropical paradise. So out in the garage for me, it's not too bad, I put a fan on and I people watch. I just recently got an ipod and downloaded a bunch of new music so I ended up working out far longer than I intended. After I stretched I could barely walk into the house. It just amazes me how far out of shape I have fallen. I don't want to get all upset about it, but it is so hard. I know what I used to be able to do and now it's a fraction of that. I just hope I stay well long enough this time to be able to make a difference. I want to be able to work out longer than 2 or 3 weeks. I will just be grateful for what I can do!

We are back in the lead and I am heading off to route for my team.. WE ARE PENN STATE!!!

Melissa

A Pin Cushion

Jeez, I'm still all stitched and bandaged up from the other days surgery and I had to have more biopsies taken today. Although something good may have come out of it. For about 8 months now I have been having a problem with my left arm. The first thing I noticed was that the skin felt rougher. As I looked at it, you can see tiny bumps which is what's making it rough. Then I noticed that it hurt if Andy touched or leaned hard against it and as I was rubbing it I felt that the skin seemed much thicker on the left. It's gotten so bad, Andy can now see that and on my shirts, one sleeve is noticeably tighter on the left. I've asked most of my docs about it but have gotten blown off as there were more pressing matters to deal with. But since it has been getting worse, I asked my oncologist about it today and he said that it might be a swollen lymph node that is blocking the lymph system.

As soon as he said that it made sense. As I have swollen lymph nodes all over the place. I asked what can be done and he said maybe physical therapy or massage. I'm not sure about physical therapy, but massage sounds nice. If that's what it is, I just hope we can help it. My arm really hurts especially if someone touches it and at first one doc mentioned RSD which would have been horrible, but I personally think it's the lymph system. I just have these visions of those people who have lymphadema in their legs which end up weighing more than a 100 pounds. I hope they can do something.

I feel like I did when we first moved here, with so many doctor appointments and tests and surgeries. Tuesday I had a bone density test and blood work, Thursday I had surgery, today I saw my oncologist, tomorrow morning I see my primary and on Monday my rheumy. I'd like to think that's the end of it but next week I have the surgeon and pain doc. After that I plan on taking a break!

The Way to Go

Well so far, today has been a really good day. To start off with I had surgery this morning. I had cancer on my temple and needed it to come off. I tell you the way to go is with no anesthesia. In my life I have had so many surgeries. Obviously I never enjoyed it, but I dealt with it. When I went through the 18 month period of 7 hospitalizations and 4 surgeries a year and a half ago, something changed. I believe it was after having surgery and I woke up in horrendous pain that they couldn't get under control. Ever since then, I've had major anxiety just thinking about it. I believe from that and a few other hospital experiences I have some sort of post traumatic stress disorder. I am not one to diagnose myself, but that seems pretty obvious.

I was supposed to go under for today's procedure and I had decided yesterday to see if it was possible to do the surgery without anesthesia, just numbing stuff. The doc and anesthesiologist were not thrilled, but they said yes. I had a little trouble as they were getting me all hooked up and settled just like I was going to have anesthesia and my body reacted like I was. I kept telling myself I was OK, but I had terrible anxiety. Shortly after the surgeon started operating, I calmed down. It was so nice not waking up all doped. I also get the shakes really bad from the anesthesia and they have to medicate me for that. I also do not seem to process all those meds very well as it takes a long time to get out of my system and it usually throws me into a flare and I did not want that to happen.

They still had to do an I.V. which it would have been nice to avoid as I am a hard stick. They got a nurse that was really good at iv's and she numbed me up with lidocaine and a spray. I didn't feel a thing. Next time I'm going to make sure they numb me up first. During my last hospital stay, I blew 3 iv's and the last one they put in was sticking out half way. They couldn't get it in any further. I was worried that during surgery I would have not gotten the meds. That time I had to be under.

If it's at all possible in the future, I'm going to try to have whatever done without going under. It was so nice to be able to walk out and not have to go through all that horrible waking up feeling yucky Plus I can eat what I want now and not have to worry.

We got the good news that the margins were clear so he got all the cancer. Plus I also got good new today on the pain bill. It passed in the house and now it's on it's way to the Senate. It sure would be nice if it passes. Well, I am going to go rest.

Take care
Melissa

You ought to be in pictures

OMG!!!!!!!!!!! How is it that you never realize how bad you look until you see pictures of yourself. My husband finally got around to downloading our summer vacation pictures and I saw them for the first time today. I knew I had gained weight before summer but I didn't think it was that bad!

I am going to allow my self a little vent here and then I'm going to look at the positive side. Since I got ill, I have gained about 40 pounds. Considering all the blood, sweat and tears that it took me to lose the weight that I originally lost and then kept off for 15 years, it is really frustrating. After leaving my career and being both ill and inactive, I put about 15 pounds on and stayed there for a few years. I accepted myself at that weight, bought new clothes and threw out all my 2's and 4's so they wouldn't depress me. I actually felt good at my higher weight and thought I looked pretty darn good in my new 14 clothes. Everyone said I looked healthier.(Great, I am sick and fatter but look better than when I was trim and healthy, HUH?!) At this time I was walking the dogs everyday and had even lost some weight.

Then my disease decided it wanted some more attention and left me somewhat bedridden. I began to gain weight and every time I went down it seemed I put more weight on then I was able to drop when I tried to be more active(and we're talking do a load of laundry active, not go on an exercise walk active). Before I knew it my 14's were too tight and then we went on vacation and the rest shows up on those picture. Oh and by the way, my husband uses a web site to download our pictures then sends emails to our friends and family to go see our pictures. I haven't yet decided how I am going to pay him back for this yet, but I promise you it will be spectacular.

So as I was getting more depressed by the minute. Let me back track and say that our vacation was at our family owned cottage in PA on the Allegheny river. It's secluded and you live in your bathing suit while you are there. Yes I did say bathing suit. Ok, back to my thoughts, as I was looking at all these pictures of me in various bathing suits( I used to have men climb trees to look over a fence to see me in a bathing suit. I sure don't need to worry about that now, they might climb trees to get away, but not look), and getting more and more discouraged by the minute, I began to notice something. In all the pictures we are doing something. Whether it was kyaking, jet-skiing, playing tennis, going on walks, playing with the dogs in the water, playing board games(which we absolutely love to do, especially there), reading a great book, cooking wonderful meals and deserts. I was DOING, not watching or wishing, but doing. I decided that this weight is a battle scar, this weight represents my fighting a horrible potentially fatal disease. This weight represents that I am a courageous warrior who is fighting with everything she has to live, not just exist, but live. Just as I have earned every gray hair on my head(even though nobody knows that but me, thank God for hair color), every pound is equal to a battle. I might not have won the war yet, but I am still fighting.

I wish I could say I love being this weight, but I don't and I still want to lose the unhealthy weight, but now when I see those pictures, I will not see a woman who needs to lose weight, I will see a person who is fighting for her right to live.

Melissa

I should listen to my husband and not watch these sad movies. Now that I've cried for a few hours, I've given myself a headache. I hate to cry. I don't know who first said if you cry you'll feel better, but they couldn't have been more wrong, at least for me. I'm not one of those people who have big tears well up in their eyes and then one tear dramatically falls down their cheek as their eyes look all luminescent. If anythings falling on me, it's the snot running down from my nose and it gets all red. If I cry more than 2 tears, my face gets all blotchy and I can't breathe through my nose for an hour. In addition, I always get a headache and when I can breathe from my nose, everything smells weird. No, I learned a long time ago I did not like to cry. Of course whenever I went to counseling, my therapist had a fit, "you need to cry and let it all out, trust me you will feel like a new woman", ah, no thanks, I'll hold it in and take it out on everyone around me.



I can find the saddest movies. If it's a tear jerker, I'll end up watching it, not intentionally, but it will spark my interest and then I'm hooked. Of course when it's over I want to talk about it and search out my husband who is probably playing video games or watching his recorded shows and talk about all these in depth thoughts that the movie brought up. He takes one look at my blotchy face and runs for the hills. No, usually he rolls his eyes and tells me we have enough drama in real life and why do I watch those things.

For some odd reason I am just focused on the more serious things in life right now. I have very little time for small talk and such. I'd like to take a line from the movie The Doctor where one of the cancer patients says to the doctor who had lied to her, "I'm dying, don't waste my time". I know that I am not dying, at least not at this moment, but in the last couple of months 3 people have died with sarc that were high profile, so it makes you wonder how many died that didn't get mentioned. I knew after reading up on this disease that it could kill you, but that seemed like such a low probability at the time, but people with this disease are dying and it does nobody any good to put your head in the sand and try ti ignore the facts. Just 2 years ago I had a horrible case of pneumonia and was walking around as usual. That is the complication Bernie Mac died of. That could have been me two years ago. I'm sorry, but that makes you think.

Take care
Melissa

I finally took the time tonight to sync my music to my new ipod(gee, don't I sound so down!). Believe it or not, this is not my first mp3 player. I got one 2 years ago so I could quit lugging around the tape player at my waist. Yes, I admit it I completely missed the CD thing. I bought one one thinking it would be better for running but found out the thing skipped as I ran and besides, since I wasn't burning my own, I would have to listen to the whole CD when I wanted only one song. I do have to say I don't know what took me so long to embrace progress and go for the mp3's. How much easier is it to download a song in 3 seconds than to put two tapes in a deck recording machine and then play the song and hit record. Even if you had fast record, it still took forever, you just had the enjoyment of listening to the chipmonks singing your favorite song. I was able to sync 63 songs in under a minute, how cool is that! Now I want a dock for the house and car.

Tomorrow I get the joy of getting my bone density tested and my bi-monthy blood work to make sure the chemo I'm taking isn't killing my liver. My bone density has been pretty bad the first 7 years I had it done. -3.7 and -3.4 and I can't remember the other number. Of course those numbers in a 30year old flipped the docs out and they first put me on Miacalcin which I loved because for me there no side-effects, until the nose bleeds. The first night I woke up with a nose bleed was very scary, I figured my cancer had spread or some such Mela-dramatic option as that until I remember that I took the spray. Then oh what a relief, but needed to change meds. I decided to go to the once a week fosomax. My first scan after we moved here was so much better, I had though the meds were miraculous until my rheumy reminded me that when you are not using the same machine each time, that it can skew results and since I had been using the other place since the very first time I got a bone density, he said those results would be more accurate. What a kill joy. So this will be the second time on this machine and we will see.

This will be my first blood work since starting the chemo that I will see what it's doing. If it's killing my immune system so I susceptible to every germ out there then it's doing its job. Since there are no approved meds to treat sarc except steroids, I have been given other meds that help other auto-immune diseases or cancers. We started with the gateway meds that did absolutley nothing and since there really aren't any middle of the road, although the med I am on is probably considered middle of the road. If chemo is considered middle ground, I was not thrilled to hear what the big guns were. All of these big guns were not approved by my insurance company because they were not approved to treat sarc. At one point my doc recommends thalidomide, wait a minute, isn't that the drug that caused all the birth defects. It was and my doc said it is being used with some cancers and it shows tumor shrinkage so It would be worth a try. Considering I had been in the hospital 7 times in the last year I figured it was time for drastic measures so I agreed. Because of the risk of deformities on fetus's had to have a blood test every month and use 2 forms of birth control. Well I figured I had that one beat as I had an emergency hysterectomy when I was 19. Nope, not good enough, they still wanted blood every month to prove I wasn't pregnant or they wouldn't give me the meds. I thought that was weird as I could prove I'd had the hysterectomy, but it was a mute point anyway as it turns out the meds are huge bucks and my insurance wouldn't pay. I've told my husband if I die, to sue the insurance company. So I am on this last ditch effort, praying my hair doesn't fall out and dealing with nausea that is getting through 2 nausea meds, although that is getting a little better.

So hopefully all will show up well. All thoughts and prayers accepted!
Good Night
Melissa

Grrrrrrrr...

I want to warn you up front that this is going to be a vent. If you're looking for nice and feel good, today is not the day to read my post. I turned on Dr. Phil today and he was in the middle of reaming out a mother who was addicted to pain pills. As far as I am concerned anything he can do to help stop people from abusing drugs makes my life so much easier. Although, I do not believe he is an advocate for pain medicine in pain management. I thought he could have been a little nicer to her but hey, she volunteered and all she had to do is watch how he has treated the addicts in his previous shows, to know what she was in for.

All that being said, the female doctor he brought in to help give advice, who is on his panels of doctors made a statement that just made my blood boil. She said something to the effect that they were studying how much impairment a person had who was on drugs. Not just addicts, but pain patients prescribed pain meds. I think it might do them better to judge how much impaired a driver is who is in either chronic or intractable pain. For myself and others that have commented on this topic, there is way more impairment when in pain. Don't think so? Go to the emergency room and look at those suffering from migraines, kidney stones, failled back syndrome and really look at how they move. Do you want to be on the road with these people?

It would be fairly simple to gauge this and I'm surprised there hasn't been an official study done on this, unless there has and they just don't want to admit that pain patients properly medicated are just as safe as anyone else.

Since he has never had anyone on his show on proper pain management, it's somewhat tough to figure out what his belief's are, but from a couple of things he has said like when he was working on a pain floor in a hospital. When he first met a patient he told them to get all their venting out now, because after this conversation, he would not let them talk about their pain. Ah, excuse me? How many times have we heard him say the same thing over and over? I understand constantly dwelling on the problem and talking only about your health and pain is the wrong way to go, but to never speak of it again?


I get so tired about how all these people, programs, news crews, report on this issue without getting the pain patients point of view. No wonder most of the country thinks pain meds are the devils playground. Those of us on these kinds of meds are treated as pond scum a great deal of the time. I wish someone would walk around in my shoes for one day and then tell me to just deal with the pain.

Melissa

A Little Scare

Mondays are so much better when the Bucs win. Yesterday we went to the first home game of the season. We had gone to the two preseason games, but those don't count(yeah right). We had a great time. We go about two hours early and eat in the club restaurant and the go up. We did have the mis-fortune to have a drunken oaf sit behind us and he ended up hitting me in the head and knocking my hat off. Instead of apologizing he said "I didn't know my fist was that big" jerk! We met the couple who should have been sitting behind us and they were not there, so he decided to sit there when it started to rain (we are under a balcony so the rain misses us unless the wind is really blowing):-). Since there were some nice looking women a few rows up, he decided to stay and flirt (although I call it making a complete a$$ out of yourself). I said to Andy if he hits me one more time I was going to call security. He also got completely obsessed with this hat the girl 2 seats down from us was wearing and he kept calling her and touching her shoulder. I can't believe her husband, who I was sitting next to didn't say something. I know people like to have fun, but when there fun starts to interfere with others fun it's time to stop.

In the fantasy standings I'm doing much better than last week and I beat Andy this week although after the pounding I took last week I just caught up. Depending on who wins tonight will decide who's in the lead. He's already considering where to go next year. That's OK, let him get cocky, he won't see it coming.

Yesterday wasn't a real good day for me and in the morning I wasn't so sure I was going to be able to go, but as I really wanted too, I pushed hard. We did leave at half-time. I almost fell asleep on Andy's shoulder at the end of the 2nd quarter. I felt bad about leaving early, but Andy said he didn't mind as he just liked spending time together. When we were at dinner, he said he saw how bad I was hurting and asked if I wanted to go home. I really did, but I couldn't do that to him, I would only want to do that if I at a point that I couldn't be on my feet. We have had to leave places before, but never a game thank goodness, and I only want to do that as a last resort. But it was sure nice that he offered.

Well we almost had a small crisis today. My cleaning lady had sprayed stainless steel cleaner on the dishwasher to let it sit and when she came back, the dog was licking it all off (need you ask which dog?). So we thought we should call the number on the can since it didn't say anything about an accidental overdose. So I called the company and the best they could do was email me a form with the chemicals listed. So I got it and at the top it said to call the poisonous control center which I did and the only thing she could end up with was an upset tummy. I was so glad I didn't have to rush her to the vet.

About two years we had a scare, I threw away one of my pain patches instead of flushing it. Now let me tell you first, none of the dogs had ever gotten into the garbage in 10 years and I am not exaggerating, they just never did it. Well wouldn't you know, while Andy was in the shower and I was still asleep, one of the dogs got into the garbage and chewed on it. From a sound sleep I was awoken by the sound of uncontrolled panting. I asked Andy if the dog had been out running and he said no. So I got up and as soon as I saw the garbage all over the floor I knew exactly what had happened. I figured she had eaten the whole thing and even though I had had it on for 48 hours, there could still be some meds left inside. As I'm calling the vet, she starts to walk like she's drunk, stumbling around, trying to lean against the furniture only to end up flopped to the floor. If it wasn't scary, it would have been hilarious. Since Andy was ready for work, he took her in to the vet. He said that was the most mellow he had ever seen her. Normally she pulls on the leash and then as soon as she gets in the vet, she starts talking(like she wants them to know she's there).Once Andy left, I was going through the garbage and found the patch. She had only chewed on it not eaten it thank goodness. they kept her for the day for observation and by the time we brought her home she was fine. It's amazing what they can get into.

Well it looks like I'm going to lose tonight. So close!

Good Night
Melissa