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

To Crate or Not to Crate

I know every dog owner has an opinion on crating and when I was younger(i.e. still living at home with my parents) I hated the thought. My grandparents never crated their boxers and they never had any problems. And to give my parents their due, they didn't initially crate the first two boxers we had either. Of course making sure you didn't fall into the big hole in the middle of the deck got old after awhile and who really needs the last 3 steps leading down to the basement. Just jump from the 4th. As you can tell, our first dog had a taste for wood. Funny, I never remember my parents pulling splinters from her mouth.

I do remember driving home with my dad after buying the cage and him telling me how much better this will be for Brittany, how she will see the cage as "her room" and it will be her safe place. How much nicer it will be to come home to no surprises. At the time he forgot to tell me how it also helps with potty training as they will never go where they "sleep"(see foreshadowing). So he puts the crate together and drags it to a spot where she can see what's going on, put a nice comfy matt on the bottom and opens the door. He turns to me and says just be normal and let see what she does. So we non-chalantly try to act like we don't even see the cage all the while watching her go over to it lean her head in to sniff while at the same time keeping her butt as far away as possible and..... walk away. That was the last time she willingly got anywhere near that cage.

The Vet called it separation anxiety, I called in cruelty, but I do have to correct one thing my dad said, there were always surprises when we came home. Although none was better than her favorite past time. Who ever said dogs will not go potty where they lay, never met a boxer. Not only did she go potty and I am not talking about wetting, she played with it. I cannot tell you how many times we came home to poo all over the place. Apparently she made a game of seeing how much she could get OUT of the cage. Fortunately for me and my dad, my mom was always the first one home:-). It's too bad Mike Rowe wasn't doing his Dirty Job show back then.

So I went off to adulthood thinking cages were the nastiest things known to dog kind and would NEVER do that to my dog. My last semester of college my husband (then boyfriend) decided to get an apartment together, to save money of course, and I smugly rescue the dog from my parents prison and move her into our humble abode.(We got her my second year of college with the intention of my taking her as soon as I got my own place). To make a long story of destruction, chewed textbooks(dogs can eat term papers)the loss of a chair and the disappearance of many small objects, short, we became believers in using crates. Fortunately for us she was over her pension for playing with her poo unless it was covered in snow and then she liked to make snow balls, and except for the occasional separation anxiety we had a successful crating experience.

We've had many boxers since Brittany and what we have learned is that just like every person has a different personality so do dogs. We have had 2 other boxers who absolutely loved their cages. They slept in them even when we were home and when we were leaving ran happily into the cage. We have had 2 boxers who were not overjoyed to go into them, but would go in on their own volition although they looked like they were dead man walking. And then there was Tess. Tessy would stay as far away from the cage as possible. No amount of cajoling, begging or even steak could get her to go in. In fact during our morning get ready, Tess would try to hide, so maybe we'd forget to put her in. At one point, after all of our dogs were adults, we thought we'd try leaving them out of their cages to see how they'd do. No I am not insane. And to our delight, they were angels. We never used a cage again until we got our next puppy. We figured we'd get her through the training and let her mature a bit and then leave her out. Unfortunately we do not have her anymore, but have since added 2 rescued boxers. We caged Max at first because we were told he was cage trained, but he is so good, we took him out the first week. Daisha is another story. We went away for a weekend and had a house-sitter. He forgot to put her in her cage when he left for work on Monday. All I can say is I'm glad my house-keeper came before we came home as she just about destroyed the house. So in self-preservation we have decided to continue to cage her until she's older(she just turned 2).

God Bless
Melissa

Dogs and Days

My goodness, this has been the week for things not meeting expectations. It started with my husband not getting his commission check. He knew that they were restructuring his commission and bonuses, but nothing had been finalized. Fortunately that got resolved this week. You know you think you come up with absolutely every contingency that can happen yet things go to pot anyway. What's that saying? "man plans and God Laughs". If that's the case, God should have sore stomach muscles from laughing so hard.

About a month ago, my husband introduced me to ebay. Since then I have been having a ball looking at stuff and bidding. Well I bid on this dog leash that hooks onto your bike so you can take your dog for a bike ride. I used to walk the dogs, but we have a 2 year old that needs lots of exercise, but I can't go that long. We thought about getting a used treadmill and putting her on that, but I thought the bike would be more fun.

Daisha is one of our rescue boxers and she is the cutest things you ever saw. She's fawn with a black mask and 2 years old. We took her in a year ago as a foster home, but pretty much knew we were going to keep her. The only problem was she was completely untrained. Nothing, not house broke, not leash trained. We had to start from scratch. She tested us on everything. We have been so blessed with our dogs, and not to brag, but we really worked hard with them to get them trained, or at least as trained as a boxer can be:-). Once our puppies became of training age, we did the puppy pre-school and all the basics. Well Daisha apparently had free rein from the beginning. She pulled you off your feet on walks, she loved to bite your heels as you walked, she did what we call counter surfing meaning jumping up on the counters to get food, of course only when we were not looking. If either my husband or myself aren't in the same room with each other and we hear noises from the kitchen, both of us go running, or in my case gimping. We've been told she has a high prey drive. The literal meaning of that is we must always be on our toes when we walk here because she can see a fly or a bug and will go after it in a second and pull you off your feet. We also have to go on lizard patrol before we let her on the lanai, or well you get the picture. Her new hobby is eating the walls, baseboards and furniture. I'm lucky my husband is handy with Spackle.

When she is good and she really is most of the time, she is precious and I know she's just bored and needs exercise, hence the bike attachment. We love Cesar and try to follow his guidelines, exercise, discipline, affection. All of our other 3 boxers are great. We have our old girl, Monica who is 12 and unfortunately she has mass cell cancer and is failing. We have Chrissy who we got right as I got really ill, so she has been my cuddlebuddy. She is 7 and truly the sweetest dog you will ever meet. Even people who just meet her for the first time use sweet as a way to describe her. She is all boxer, wiggles, excited and sloppy kisses.

We had Tess awhile ago, but she died of lymphoma and that's when we thought we would foster boxers through Boxer Rescue. Our first was Max who by the time we got him home was ours. We were foster flunkies in a matter of hours. he is such a good boy, completely calm submissive. He was abused and then abandoned, but once he knew we weren't going to hit him and he stopped ducking every time someone moved quickly, he settled in. Max loves car rides and I can't take all 4 of them with me, so Max goes with me on my errands. It's pretty nice too, he can go into the bank with me and the pool store when we go in to get our water checked.

We'd love to "foster" more, but 4 is about all we can handle right now. We might do it again after Monica is gone, but Andy says we can't keep it but I can't guarantee I won't fall in the love with it. So we'll see. If we had more property, I'd have all of them. They have really been a God-send with me being ill. Accept for Daisha, it seemed she always knew when I didn't feel good and that's when she misbehaved. I figure she sensed I was weak and took advantage. I would love to ask Cesar, how to main calm assertive energy when you feel like hell. She doesn't do that anymore thank goodness, but she does need exercise. So do I, but that's a whole nother topic.

Good Night
Melissa

A Good Vent

For me, one of the hardest parts about being in chronic pain is the loss of control. from the big picture of my body betraying me to the smallest details of what to eat, it seems like I have no control. My schedule consists of doctors appointments, test, procedures, and meds. I hate the fact that I need a multitude of meds to keep me going. I used to take pride in the fact that when the nurse would ask if I was on any medications I could say no. Now I need to ask if she has enough room to write it down. Being in chronic pain usually means that you will be on some sort of narcotic. You want to talk about feeling helpless, for most of us, we must take these types of medications to have some resemblance of a productive life. But because of the stigma attached and what has happened in this country with our "war on drugs", taking these meds will take you to new levels of helplessness and frustration. I am so grateful to have a wonderful pain doc who I have been with over 5 years, but the hoops required by insurance and government would try the patience of a saint. I get so angry that something as simple as taking a vacation needs the planning and execution of a corporate take over. Anyone taking these meds knows exactly what I am talking about. And do not even let me get started on the insurance companies knowing more than my doctor and dictating his options for me. I feel I have more chains around me than Jacob Marley. And the waiting involved, waiting for approvals, waiting for phone calls, going back and forth because the right hand doesn't know what the left is doing.

I used to think if I handled all the contingencies, and worked out the kinks ahead of time, that this process will be somewhat . That was me desperately holding on to the idea that I still could have some control over this process if I applied my organizational skills. I understand I am not the only patient, I understand I am not the only person to have this insurance, but jeez, is there a contest to see who can misunderstand the information the most. It's kind of like that game we played in class where you would stand in a line or a circle and something was whispered to the first person and then they would whisper it to the next in line and so on down the line and then the last person speaks what was whispered out load and it is always amusing to see how the original information got changed as each person relayed the info. How the statement usually sounds nothing like it was originated? Well trust me it is NOT amusing when this info is my health issues and by the time it goes from the front desk staff to the nurse to the doc to the insurance customer service rep to a health liaison at the insurance company, back to my doc, back to the nurse and then 10 days later back to me. And usually in the form of having nothing to do with my original concern so the process starts again!

It's a good thing I am on disability because it's a full time job trying to manage my health care. And I know I am supposed to feel grateful because we have the best health care in the world and I do agree with that and am extremely grateful. Believe me I have thought how horrible this would be if I had no insurance or lived in another country. But no matter how great it is, when you move from a healthy person who has insurance, where you might deal with your insurance company once or twice a year to the chronically ill where your communication is almost daily, the problems with the system become blat anally clear.

And now after dealing with this for the last 6 to 7 years, I admit defeat. No matter how organized I have tried to be, no matter how many steps I take to try to simplify thing, no matter how much I anticipate problems, no matter how many hoops I jump through, I am still entangled in insurance no mans land.

Well that is my vent for the day. I used to believe if you were going to complain about something, then you should have some suggestions on how to fix it. And I have given a valiant effort the first couple of years. But I am big enough to admit defeat, I know when to fold em and boy would I like to walk away.

Good night from no man's land
Melissa

Well it's finally here. If you have no idea what I am talking about you might as well quit reading. GO BUCS! Before anything else, I hope this season is filled with great games but most important, that the players stay healthy and with no major injuries.



As with most major holidays, the football season is filled with tradition. Although my wonderful hubby decided to break with tradition this year and in addition to making our picks, we are also playing in a fantasy football league. I am still not sure about this, but as I have won all but 2 of the years since we have been keeping score(1997), he needs to try something so he can win. Besides just the gloating factor, winning is very important as the winner will pick where we go next season for our away game. This year we are going to Kansas City. Yes, my husband got to pick. With places like Miami, San Francisco, San Diago, Denver, New England in the fall. No, we're going to Kansas City. Picks like that just make more incentive for me to win.

I took a break to watch the games and needless to say if it keeps up like this I'll end going to Cleveland next year. Well at least I got to watch Serena Williams win the US Open. I love tennis and used to play. In fact I played for Penn State and made it to regionals. I was lucky that two of the facilities I worked for had tennis courts and I was able to play in the leagues. I remember I'd be right in the middle of teaching one of my classes and someone would come up to the window and hold up a tennis racqet, which meant someone didn't show up can you play? I will say I am very blessed, even though my career was short, about 15 years, I was able to live my passion and I would not trade a single moment of it, I had a blast. Although if I could go back in time, I'd go to one of my tennis lessons when I was 7 years old and instead of crying that I wanted to go home, I'd get serious. Of course my first choice would have been to play football, but as seeing they still don't let girls play in college or pro's, tennis would have to do.

Anyway, got off on a tangent there, I was talking about traditions. My dad got me into football when I was little as a Pittsburgh Steeler fan. And thanks to his job, we were able to go to one home game a year and sit in the box. As my uncle was a Cleveland's Brown fan, that usually made Holidays all the more exciting. My grandmother put a ban on football games during holiday get together's, but one by one most of us stole off to the upstairs to watch parts of the game hoping to go unnoticed. Thank goodness the women were always in the kitchen until meal time, and everyone wondered why I picked to clean up rather than set up.

Going to Penn State only added another dimension to our love of football as we now paid attention to college ball. I made the Blue Band and had some of the best years of my life. To make it even better, while I there Penn State was always in the top 10 and in my third year of college we won the national championship. Talk about excitement, I don't think I will ever have an experience like that one. Even though we were just the band, we were included in a lot of the activities. Marching in the parade was fantastic. If you're not familiar with Arizona, the stadium is built into the mountain and we were standing outside waiting to go into the stadium to do our pregame performance and the sun was setting. One of the most beautiful things I have ever seen.

I met Andy, my husband, my last year of college. I had stayed at college for a summer semester and met him in one of my classes. I wished I would have known how nice summer semesters were and I would have gone every summer. It was so much more layed back and easy going.
Andy and I start seeing each other that summer and were still together for fall. How or why have no idea, but he never went to any of the games. If you have never had the opportunity and you like football, go to a college game, especially a team that is doing well. It's completely different from the pro's. So, I got Andy to go to a few games, but he still wasn't too interested and as we were in our senior year, things got busy pretty quickly and as time moved on we graduated, got married, moved to Florida and began to work. We didn't have much time to watch football. When we first moved down here Andy was working 2 jobs and I was working 3 which meant weekends. It was in 1997 when our lives had settled down and we began to watch it again. The Bucs had just changed their colors from that candy orange to pewter and red and they began to play good football. My biggest regret is we didn't buy season tickets back then when there wasn't a waiting list. To this day I can remember the commercials and see the billboards offering cheap tickets trying to sell the stadium out. By the time we woke up, they were Superbowl Champs and we were number 81,000.00 on the wait list. I figured we'd get tickets when we were 90.

So with no tickets, we tried to make our own fun. We got our jerseys to wear then decided the dogs needed jerseys as well. We put them on and walk them around the neighborhood on football Sundays. We try different foods famous from the cities the Bucs are playing against, although that turned out harder than I thought it would be. For Monday night football we always get wings. Since we added our pool a couple of years ago, we like to watch the first game in the pool and on Monday night's, it's the hot tub.

I have to say, our interest in football has really helped me while I've been sick. Now that we have season tickets, I really look forward to the home games. Before the game, we eat at the restaurant in the stadium and we like to sit by the window and people watch. It's fun to see how people will dress up, paint their faces, wear silly hats, etc. We've made friends with the people around us and feel like we really fit in. It's been hard with us moving the few times and with me being sick, to make friends, so this really has made a difference. I did real good last year and only had to miss 2 home games. I was sick for one of them and left in the third quarter to go sit inside in the air conditioning and comfy seats. I got an overstuffed chair and swung my feet around and watched the rest of the game on the TVs they have. I'm pretty sure most of the people thought I had too much to drink, but I didn't want to leave since Andy had invited some friends and I didn't want them missing the game.

For me having things to look forward too meant the difference in how I perceive my illness. Once Andy and I started planning these things, my outlook brightened considerably. Last year was our first trip to an away game and we decided not to go to far so we went to Atlanta. We had such a good time. We went out for dinner with a friend of Andy's and then saw the show the Bluemen on Saturday night. After the game on Sunday we went out to dinner at a nice restaurant and then flew home on Monday. Since our anniversary is in September we decided that our yearly trip is our gift to each other. So even though Kansas City doesn't sound too exciting, we'll make it a great time.

Here's to a great football season 2008!
Melissa

Faith

Well last night I took my next dose of chemo. Hopefully this week will be better than last week. I did some more research on the med and it said unless you were dealing with life threatening cancer to not take the drug. Well OK, right now the cancer is not life threatening but the question is the sarcoid? What would Bernie Mac have said if you had asked him if his sarc was that deadly? I have been advised from one of my many physicians that the risk could be more than the benefit, and with any of the other immune supressing drugs not an option for me, what do you do? It's a very humbling place to be beyond treatment and the disease out of your control.

For me this is where my faith has to be at it's strongest. I've never understood how people handled illness without faith in something greater than themselves. Like now, man has failed me. All the drugs, procedures, surgeries and top doctors have failed to be able to cure me. I can claim myself well all I want to, I can eat as healthy as possible and if I could exercise, believe me I would do it, but in those darkest moments, when human ability has failed, and I have no fight left in a cell of my body, I know that there is something so much greater than what I am going through. I am not even going to suggest that I understand it and there have been many a day that I prayed for the suffereing to stop, but just to be able to rely on that knowing allows me to get back up tomorrow and fight another day.

Melissa

What a Beginning

Living with sarcoidosis has been one of the most challenging things I have ever faced. I have had cancer and this is much more difficult than dealing with that has ever been. Sarcoidosis is considered rare but many in the community are starting to doubt that. If you've heard about the death of Bernie Mac, you might be familiar with sarc. His death certainly gave those of us with the disease a scare and it just emphasizes just how deadly this disease can be.

My story actually began about 20 years ago when I was having kidney stones(sarc causes high levels of calcium which can result in kidney stones)and other problems. I had a biopsy done and as it turns out I had sarc back then but for some reason no one told us a thing. So unfortunately for 20 years the disease was left to advance and wreck havoc at will and did it ever.

I was sick way to much for someone who was supposed to be an example of health. I was a fitness director, group exercise instructor and a professional presenter. I was also sick, alot. No one could ever put the dots together and figure out what was wrong. I began to think I was crazy! As the disease progressed unchecked I grew more ill and slowly began to cut back on my responsibilities. By the time my husband was transferred to Alabama, I had quit working all together after a short time of trying to work one last time.

Once in Alabama, instead of seeing an HMO doctor, I saw an Internist and finally things began to happen. He literally referred me to 7 specialists to find out what was wrong. It was from a skin biopsy that I was initially diagnosed and from there other tests and another biopsy confirmed sarcoidosis. Now the really great thing about having had cancer and having sarcoidosis at the same time is when you find a tumor or growth, you have no idea which it is so lucky me gets to get cut open for a biopsy every time I find something"suspicious".

One of the most difficult issues with sarc, as it's an auto-immune disease, the fatigue is debilitating. There are some days it is almost impossible to get out of bed. For a fitness freak, this has almost taken me to the border of insanity (my husband would probably tell you I crossed the border a long time ago!). So to be honest, since we only lived in Alabama 18 months, I do not have a lot of memories from there.

My husband got transferred back to Florida(thank GOD!!!) and our first two years here my illness went from stage 1 to4, I was awarded disability and our third year back I was hospitalized 8 times. I am a difficult patient as having cancer puts a little different spin as a lot of the meds they like to give for sarc close down your immune system which can increase your chance for cancer. I tried to get into a government study but was told I was too sick and we conferred with the best sarc doc i n the US and he said he had no options for me.

So this brings me to this week. No one knows how you get sarc and their is no cure. Some people never know they have it and others are debilitated by it. There is no med just to treat sarc so docs usually use prednisone which I cannot tolerate and other auto-immune meds. They also use chemotherapy which is what I started this week. One of my biggest problems with these meds is you are not supposed to take them if you have an infection and I almost always have a kidney and bladder infection. But finally things have cleared up and I started them last week. Even though I am on two nausea meds, I am still struggling with terrible nausea. On Saturday I thought I was dying(OK, a little melodramatic), but come on, have to be well for the football games.
Last year we were blessed to be able to get season tickets to the Tampa Bay Bucaneers and it has done wonders for my disposition. It is so nice after so many years of dealing with illness and serious issues, to be able to go yell and have some fun. You should see us, we are real geeks. Although we do not go as far as to shave our heads, paint our face and wear a ship on our heads(my husbands friend does that)although I guess I could if I end up losing my hair!

So as the first week of football season approaches, I'm praying I will be well enough to go.
I guess that's it for now.

Peace
Melissa