Dying Young

I have been reading a new book lately and though it had not held my attention as a cannot put down stay up all night reading book, it is definitely thought provoking. The title is Two Weeks of Life by Eleanor Clift. It is a story about her husband dying of cancer, but what makes it interesting is that this is happening during the Terri Shivo drama. The author draws similarities as well as discusses many political issues related to the right to life movement as well as dying with dignity.

Tom died today(in the book) and as my mind wrapped around itself around the idea, it began shooting off into many different areas. Would I want to die at home or in a hospital, did his wife cry or had she already shed every last tear, was he in pain(they had brought in hospice months ago so I would imagine no) and lastly how terrible for one so young to die. Then by a will completely of it's own I heard my mind ask me is it really? No question dying young before all your goals are accomplished is a tragedy, but isn't all death a tragedy? Who really accomplishes everything they wanted to before their time up? No one no matter the age wants to die unless physical or mental difficulties push them there.

I made the dreadful decision to watch this special on a hospice and what happens during the dying process. Just the raw footage of people drawing in their last breaths. It was very disturbing, watching their last days, hours minutes. Most were elderly a few in their late 50's maybe. Their lives had come to this, waiting to die in a hospice nursing home. Is this a better way to go? Those images will stay with me forever. Is it better to die in the midst of living? To die while there is still something to be left behind, rather than to do it while waiting for it to happen. I do not want to die young or anytime soon but neither do I want to wither away, a shell of the person I had wanted to be. I guess there's a reason that this decision is not up to us.

Christmas

Well, it must be really bad. I just rewound a commercial to watch 2 dogs in front of a roaring fire happily chewing chewies as they lay snug in their dog beds wearing the latest in canine sweaters. Yeah, I have it bad. Since I have become ill, I am not much for shopping. I would rather have my teeth pulled with a wrench than go to a mall, especially this time of year. I have become a huge fan of Internet shopping, 3 hours in front of a computer, bought, wrapped and shipped and my Christmas shopping is done.

Most of my holiday cheer came with the anticipation, the baking, wrapping, shopping . Ours started the Friday after Thanksgiving and didn't stop until December 26Th. I was blessed to be able to take the week of Christmas off when I worked as we needed all the time to fill in the traditions. Now that we are unable to do those things anymore I watch the sappy commercials with spite and resentment. Don't they know that many if not most people do not have the happy cheerful Christmases they portray? I wonder of they do more harm than good. Those that have loving families that get together don't need commercials to remind them to be happy and festive. For those of us who have either lost that or never had it all it does is remind of us of what we have lost or never had. Personally I'd like to smack some of them.

The last few years I have been mostly successful at ignoring all the family oriented commercials and Hallmark movies and scoffed at all the materialism that now makes up the holidays. But this year I found myself doing something different and didn't even realize it until weeks of surfing and Christmas shopping. I find myself not looking at the jacket on sale, but the people playing in the snow, or the family playing a game in front of the a roaring fire and the tree lights sparkling in the background. I find myself being taken in and not wanting the products, but wanting the life that the products promise. A cozy Christmas at a cabin away from it all with snow ball fights and sled riding. Then coming in and taking a steaming bath in a claw foot tub with the scent of vanilla. Next putting on flannel jammies, wrapping up in a hand made quilt and enjoying a night of family and friends. Yep, I'm sold. For whatever reason this year I'm buying into it, hook line and sinker. I just have to have the faith that someday again I will have that fairy tale Christmas and to be grateful that I had so many just like that. So for those of you that do, enjoy them, treasure them, make the most of them. Before you know it things can be completely different and all you have to hang onto are the memories of Christmas past.

Happy Holidays

It's that time of year again, the holidays. Where TV adds make us feel guilty if we do not have the perfect family, or that all we need to do is go buy things to make our holidays perfect. I never used to pay any attention to ads or TV before. I was too busy living my life and getting ready for the said holidays. A few years ago as I was pretty much bedridden and watching quite a lot of TV, I began to pay attention to those ads. The majority are family oriented. Everybody gets together with their families for all the holidays. Scenes show women in huge kitchens cooking perfect dinners while husbands and kids stand beside the blazing fireplace with a festive tree laden with christmas presents. As I watched these I began to get angry. I began to wonder how many people did not have these perfect family get togethers. My bet would be quite a lot.

Since I have gotten sick, and with my mothers bad health, getting together for holidays is often not possible. And if it is, it resembles nothing like the holidays we used to have. I had many of those perfect holidays. I was one of the lucky ones that have those festive filled traditions. Sadly with no children to pass them down too. I tried once to share them with my inlaws and my husbands words to me as we waved goodbye were "I will never do that to you again!" So you can imagine what a fun filled week that was.

I have completely given up on having those magical holidays and would settle for just being able to get together without a crisis. If it was true that suicide rates went up during the holidays(which it is not), I could seriously understand why. Those adds makes you think you are the only ones who will not be surrounded by family and friends. They have made me so sad I now turn them off. In fact the only adds that make me more upset are those for the save the animals now organization. I'll save my rant on them for another blog. I know the holidays are about family and friends, but I wish the advertisers would be sensitive to the fact that not everyone is going to have a crowded calendar and that many are going to be alone.

So for those of you who are blessed to have a full house, or if you are one who received many invitations and are trying to figure out how many meals you can eat in one day, be grateful. Not only be grateful, but be sensitive to those around you who have no plans or who are unable to go anywhere. When the rest of you are gushing around the water cooler about all your holiday plans, remember that there are people that have no plans. People who will be doing their best to pretend that it's just another day.

Forgive me that this is not your typical count your blessings, list what you have to be thankful for post. I figure I try and look at the glass as half full most of the time so I deserve a little pity party, even if it is on Thanksgiving. I'm sure I'd feel better if I didn't have to watch those insipid adds.

To Vaccinate or Not

Sorry guys, another heavy one. I do not want to die. I know most people don't and we all will at sometime, but some of us are closer than others. I have been debating getting the H1N1 vaccine. I don't normally get any vaccines even the pneumonia one even though I am more susceptible to that one. I am immuno-compromised so I am eligible to get it, I just don't know if I want it. Will it effect my body differently with the sarc? Will I flare? No one knows. But more importantly how sick will I get if I get the H1N1? I could get sick enough to die. One of my docs prescribed a high dose of a simple vitamin. She didn't know that by taking that large of an amount could have thrown my disease into over-drive and it could have killed me. At the very least, made me seriously ill.

This disease that many people have never heard of could kill me and sooner rather than later. Usually being in the top 10% of something is a good thing. But not when it is the top 10% of a rare disease that can be fatal. Death is normally the last thing people want to talk about. What happens when decisions that are normally more than a passing thought with minor consequences suddenly become life and death, literally.

I don't want to die. I don't want easy questions to suddenly have serious answers. I want to go back to when not getting a flu shot simply just means that maybe I'd get the flu.

Melissa

Could it Be A Hallucination

OK, I'm going to warn you now this one is going to be WAY out there. I normally don't write about some of the things that pop into my head because I don't like to seem odd, but what the hell.

I have been watching Grey's Anatomy. Yeah I know, like my hair, I'm usually behind the curve. I didn't start watching this until last year so I am just catching up to this season. I'm at the point where Izzy is being treated for melanoma. This is the same kind of cancer I had and one of the things she said caught my attention. She stated she had tactile hallucinations. Hallucinations she could touch and feel. Heck, she even had sex with hers. Soooooo I was thinking wouldn't it be sort of cool, that all this crap I have been going through was a tactile hallucination? Well, it would if you take away the part that means the cancer spread to the brain.

How cool would it be that I am living a hallucination and the real me is out there living a wonderful life with my husband and family? And that all this pain and suffering is one big friggin hallucination. Now I don't have any dead boyfriends that could come back but I'm sure I would be having a lot more fun than I am now. Maybe in my real life I'm a Victoria's Secret model and I am doing a shoot on an exotic island. Well if someone can come up with a better one let me know!

Stadium Fun

Friday we took Max to the USF vs. WVU game to see how he would react in a stadium. Dave, our trainer, thought he did good. He was definitely freaked, but behaved himself. For me it was very hard. Because we were only staying for an hour, we got cheap seats and so of course they were in the top section. We actually decided to go almost all the way up so we could get to an area where no one was so we could work with him a little easier. For the most part I think he will be OK. I am so grateful we are able to have the handicap seats for our season tickets, because I would NOT be able to climb all that way every other week. I have been down since Monday and I think it was from Friday night.

One of the things I experienced for the first time that I wasn't expecting was how many people react to handicapped people. Now maybe it is my fault but I thought people would maybe be more considerate instead of less. Dave said to get used to it. After walking up 6 ramps and finally getting to the level where our seats were, we walked over to the steps. Max and I haven't done steps together yet as we live in Florida and there are not a lot of steps. So we made it almost to the landing when a man and woman started to come down. I stopped and looked up at the man and he stopped on the top step and looked at me. I said excuse me and he continued to stare at me. I gave him direct eye contact and held my ground. The jerk, stared me down and refused to back up. His wife didn't move either although she wasn't as much in the way as he was. This jerk made me go around him with a service dog. He said nothing just stood there. He was lucky I was out of my element and wasn't prepared for people to act like that. Next time I am going to speak up for myself. Dave said to get used to it. I wouldn't have believed it if I hadn't seen it.

Have a good noght!

Do we really want to be invisible?

Invisibility. When I was little I used to think how cool would it be to be invisible. Harry Potter was a long way off from being written with his invisibility cloak, but who hasn't secretly wanted one of those cloaks. If we had one, when would we wear it? At the water cooler to hear what people think about us, or would we wear it to try and get away with things? The options are limitless. But lets go a little deeper, would we really want to be invisible?

Since we are nearing the end of Max's service dog training, we have been going into more stores lately. Many people see us and comment on what a great looking dog Max is(he is too if I don't say so myself!) or to ask if they could pet him. Many moms stop and explain to their children that he is a working dog and can't be petted. A few took the time to tell me about their dog experience(mostly those who had or have a boxer, boxer people are the coolest people and there is an immediate connection). Most people just smiled and said hello. But at every store we had entered, having Max opened the door for pleasantries. To be honest this is one of the reasons I wanted to have a service dog to be more social. After our last lesson, we thought we'd stop and get groceries and give Max some more practice. We shop at Publix and love it. We have 3 different ones we go to depending on where we are doing our errands. This particular day we were close to home so we went to Publix near a fairly large development. It's a very expensive development, almost it's own little city. We've been shopping there for years and never thought anything of it.

So in we go and for the first time ever, we were told we were not allowed to have a dog in the store. We told him he was a service dog and pointed to the patch on the vest. It wasn't so much in what he asked it was how. Then as we continued our shopping I noticed we were getting strange looks and some boarded on displeasure. By the time we were done, not a single person said a word. Many times I had to ask people to move their carts so Max and I could get through. I apologized and tried to sneak around. Not one person said oh sorry or anything. The final straw was on the way out. Standing between the automatic sliding doors, was a group of women and a few men just shooting the breeze. My husband asked them 3 times to excuse us but they continued to talk and ignored us. We decided to start walking through and they didn't move an inch. As I got even with them I spoke loudly, excuse the handicapped lady. They turned to look at me, decided I wasn't worth their time and turned back to their conversation.

Today I was invisible to many and it was not a nice feeling.

An Update

It's a month into football season and I have made every game so far! Although with the Bucs 0-4 this certainly would be the time to miss a game. Fortunately PennState rebounded after their loss to Iowa(second in a row, 6 losses out of the last 7) but their season is still alive. We proudly fly our banners on Saturday and Sunday. To me they are a beacon that shows there is still more than illness going on in this house.

Max is almost finished with his training! He got his CGC certification(canine good citizen) so if I am ever able I can use him as a therapy dog and take him to visit the elderly or sick kids. The training has been hard on him and me as well. We now can go into stores and and such places and our next challenge is to try a restaurant. That should be interesting!

We had a great time at Rockmere and I actually stayed up there an extra week kind of like a trial for next year when I hope to be up there for a few months. Andy will fly in for long weekends and of course his vacation. It is so rejuvenating for me up there, and Andy loves watching the birds, especially the humming birds. We put out bird feeders and this year he put up a bird house with the hopes that next summer we will have some renters. We are both very excited about next summer and once football season is over will be biding our time.

I had thought I was doing as well as possible with the sarc and the chemo shrunk one of the large lymph nodes in my chest, I have more scar tissue which is not good and I found out how not good last week. I had my appointment with my pulmo and after talking he wanted to do a test, the 6 minute walk which gives my oxygen saturation at activity. I was 1 percentage point from needing oxygen. I wasn't expecting that at all. He really wanted me to be able to have it but trust me I was not disappointed. The last thing I want to be doing is carting that stupid tank behind me. He gave me a script for a wheel chair so I won't have to walk far if we go to an event or fair or something like that. The wheel chair is bad enough but I know I need it for those special occasions. If we would have had one for the Superbowl, our experience would have been so much better.

It was a slap in the face. I had been doing good for a few months and we were doing things "normals" do, taking a vacation, going out to dinner, running errands, it came very close to feeling like I was living a normal life again. And then one appointment later, my illness lets me know that it is here, waiting on a whim to take back over my existence. For me it was the final confirmation. I will die of this disease. It may not be tomorrow or next year or 10 years form now but I know what is going to kill me. I don't want to sound dramatic because I really had hope that I still could have a life and even die of something completely unrelated to this disease. But I do not believe that anymore. I can still make the most of what my life is, but I can no pretend that maybe this has been a bad dream that I could wake up from.

Gee, other than that, not much else going on!!! Where would be without humor?! Peace!

A Silent Battle

This morning when I awoke at 3am, I felt fine, since I had a small dinner I was hungry so I got a bowl of ice cream, turned on the tv hoping to fall back to sleep. Within an hour, everything changed. At this point I was debating whether I needed to call 911. As this has happened to me before, even though I could feel myself beginning to panic, I was able to sit and self talk myself down to a reasonable level.

I am at war with chronic pain and my illness. There are many battles and skirmishes along the way. Some are loud with screaming and loud lamenting and others are silent, so very silent that others around you have no idea of the battle waging within. Today's was a sneak attack. I have had some good days and we had been hopeful that I was turning the corner and coming into some well deserved good days. It crept up and jumped me from behind. As the dizziness hit me I was lucky to be right near the bed and immediately laid down. I waited breathlessly to see where it would strike next and when I felt my heart racing I knew I was in for a fight. I sat up assessing if I needed reinforcements but as the racing settled down fairly quickly I made the decision to hold my ground. I laied back down and began the slow arduous path to the other side.

Anyone who experiences chronic pain knows exactly of what I speak. For some the room must be dark with no noise, for others constant movement helps. For myself, I lay on my side and curl somewhat into a ball and try not to move until it is over. I never know what the enemy has in store for me, he has many weapons in his arsenal: headache, nausea, vomiting, chills, fever,
racing heart, skipped heart beats, shortness of breath, dizziness and anxiety. It can be only one or a combination. Today's started with a weird dizzy feeling which immediately went into my heart racing. I became very anxious wondering if it was going to be bad enough to call for the EMS. I assumed the position(laying on my right side with my hands tucked underneath my cheek and began the silent mental battle that I have no choice of fighting.

With my eyes closed I begin to assess the damages so far. My heart rate is slowing down and for that I am SO grateful. I wonder what has caused it this time and as always come up empty handed. My breathing has calmed down so I think I may be lucky this time and will not need reinforcements. I notice that I am having a bad burning feeling in my chest and throat and as I try and make little burps, I succeed in burning my mouth. This tells me my stomach is full of acid and as soon as I feel able I need to get my nausea meds. I also realize my head is pounding and the chills make my body shake uncontrollably.

My husband needs to go out of town today so I make the decision not to tell him whats going on so he does not worry.

For the next 3 hours I lay quietly on my side as as internal battle rages both physically and mentally. The symptoms come and go repeatedly and I wait for the them to ease up just enough so I can take some meds. Finally I am able to take the meds and I go back to my position to wait for them to kick in.

Slowly the majority of the symptoms ease up and I am able to open my eyes and shift my awareness from the inner battle. Today I won, today I was strong enough.

Too Sick For Government Study

Wow, I'm not so sure being told you are too sick to qualify for a government study is a good thing! Except I know that they are trying to see if a specific drug will work and they don't want people who are too sick messing up their data! Geez, if that doesn't make you feel bad I don't know what will. I'm sorry Ms. Smith, you are just too sick for our study, we only want people who will show improvement, not that the meds don't work. Sorry but you are out of luck. My feelings would have been hurt if I hadn't already heard this. My pulmonologist had me get in contact with one of the top doctors in sarcoidosis and after reviewing my records, he also said that there was nothing else to offer me that I had not tried or was unable to try due to my cancer. Today I take this news in stride, but on days when I am struggling to make all this make sense, I am very frustrated with the inter-connectings of my diseases.

One of the women who post on a support board did get into the program and recently posted how nice it was to have the doctors and staff saying some of the things we patients have known and felt. Like this disease is very bad and since doctors don't know much about it they minimize it. If I ever needed proof of this all I have to do is remember my first rheumatologist upon hearing of my pain and fatigue complaints said all I need is a good pair of shoes!? Another thing she said they mentioned that even though the disease may seem to be in remission it is still there and will come back stronger. It can affect everything in our body and we need to know exactly what areas it's affecting, and things change daily. Hopefully some good things will come out of this study. We could really use some new medication options.

Service Dog

About 2 months ago I began to research the idea of getting a service dog. I can't remember exactly what compelled me to do so, but I do know what the catalyst was. Some friends were coming down for a few weeks and wanted to see us. Unfortunately we were given short notice and there was no planning involved in the technicalities. I thought they were going to be staying at a local hotel for a few days so there would be some flexibility in seeing them. Apparently I misunderstood and they were only going to be here for a few hours. They had brought their dog with them so that limited us a bit and we decided Andy would meet them for lunch since I was not feeling well. When he returned and I inquired about their plans he told me they had none. I asked the question how in the world did they think they would get a hotel down here on a moments notice and they had a dog and had to go to a dog friendly motel. My husband said they were not worried about that as they just told everyone he was a service dog and they could take him everywhere they went.

Lets forget the whole dishonesty part and focus on my thought process. Once I let go of my anger, this propelled me into checking service dog training quicker than I had intended. Their dog was not trained and I decided then and there we would have ours go through the whole program and be certified.

Once the decision was made, it was "all aboard and full steam ahead". For me it was a no brainer, being able to take the dog everywhere I go was something I had always wanted but was restricted by law, but now no longer. We laughed that our new seats at the stadium that are ideal for bringing a service dog were just recently changed when we had no idea we were going to pursue this. The work will be hard, but well worth it. I am hoping this will help me get out more now that I will have some company to go along. Even my husband is looking forward to bringing her along on our dinners and errands. She will be able to fly with us when we go to our away games. The only difficulty will be making sure we get the right seats at the away games.

This is my next step in the commitment to live. The next to the last training she will receive will enable me to take her into nursing homes and such as a therapy dog if I choose to do that. Finally an opportunity to give back, to make something good out of something so devastating. This could be the start of something wonderful.

Worried

Even though I know it's probably nothing, I can't help but be a little worried. On Saturday I received a letter in the mail from where I just had my MRI and mammogram. I had called and asked them send me in the mail the results of my MRI and thought this was it. To my surprise it was telling me that my mammogram was abnormal and I needed to contact my physician. Actually this is not the first time I have received an abnormal mammogram. In fact from my first mammogram until 2 years ago all my mammograms came back abnormal and I had to either go back for more films or an ultra- sound. After my breast reduction I had a normal mammogram for the first time, which was last year. So this year I figured to receive the same. Not only is it abnormal, but for the very first time I also felt a lump. So I think that is why I am a little more anxious about it. To make matters worse my doc is on vacation so it will be a few days until I know what my next step is. The other reason I am a little worried is colon cancer runs in my family. As I had heard about getting testing for the braca gene I asked my doc if there was a gene to test for colon cancer. She told me the braca gene IS the test for both breast and colon cancer. So I'm wondering if you have that gene does that mean you are at a higher risk for either colon or breast cancer?

It just seems never ending. No matter what I do I just can't get away from cancer. I know since I have had cancer that all precautions must be made but it would be nice to have a test be normal. So in the midst of all the tests I have for my sarc, I get to have more tests. All I can say is thank God for health insurance!

Alone

It's Saturday night and I am alone. It's my husband's birthday weekend and he is at a Monster Truck Event. I personally cannot believe he went, but he said it was on his bucket list. He asked my dad and uncle to go but they kind of blew it off at the last minute. My dad said it was one of those "seen it done it" kind of things.

I can remember the day when I was glad Andy had something scheduled so I could have some time alone. As an only child not only did I get used to being alone, I began to need it. Now I don't like it. Even when I am down and we are not doing anything, it's nice to know I am not the only one in the house. The problem is that Andy and I were so used to being busy all the time and now that I am down he doesn't know what to do with his time. He gets bored and antsy.

I have never understood "boys night out" or for that matter, "girls night out". I have never been a "girls" girl so I was not invited to many girl outings. When I was, I was completely out of my element and could not wait to get home. Even mixed parties were daunting because as soon as you arrived, you split up to go to your respective corners. I always hung back and marveled at the ability to make small talk. Not me, I'd rather talk politics and religion. My latest attempt at having an intelligent and friendly talk on religion did not go very well. It was the annual "work" party and the seats were assigned. We got lucky and our good friends were at our table who happened to be Mormons. The husband like myself is very passionate and we could go all night debating Christianity and The Church of Mormon. In fact we did and it remained civil and friendly the entire time. Well another couple at our table happened to be evangelicals and at one point as the husband and I were talking about the Mormon Church the guy from the other couple spoke up and said,"Mormon's are a cult". Hhmmn, where does the conversation go from here? It wasn't very pleasant . As the heated conversation ensued, my husband gave me a dirty look saying "I can't believe you started this!" I shrugged my shoulders saying "I had no idea they were going to attack his faith like that?" Needless to say I am banned from bringing up religion at future gatherings (party poopers).

So I guess I will have to go back to my quiet role acting like I am enjoying the shallow small talk about absolutely nothing wishing I was at home playing with my dogs.!

Good Night!
Melissa

I just love test time. All I have been doing is going to the doctors or going to get test. Last week I had a blood test and a follow up with my primary and my rheumatologist. The current information is not too bad considering. My ACE(angiotensin converting enzyme) is extremely elevated but I would have guessed that. My vitamin D is still low and I have an order to get another blood test(oh goody I get stuck again!) to break it down further to know for sure whether or not I need to take it in pill form. She is worried that people with low vitamin D don't fight cancer as well as those with normal vitamin D levels. The rest of my blood was normal which is fantastic.

Next week I have scheduled an MRI for my lumbar spine and a mammogram. Not fun, but at least I will not be getting stuck for these.

I got the CT scan results and got good and bad news. The good news is the lymph nodes in my mediastinum have shrunk. The bad news is I have more permanent lung scarring. It's around where my R middle lobe is collapsed. They (Dr. Carter and Dr. Rehman) feel the reason for the shrinkage in lymph nodes came from the MTX(methotrexate). So I am now back on a stronger dose of it and I get to inject it weekly, Hooray!! NOT! I did the first injection Friday and it was not bad at all. With the 3 meds I am taking to avoid the side effects hopefully it won't make me feel to bad.

And with that honor I also get to go once a month for a blood test to check my liver enzymes. We discussed referring me to an endocrinologist because with both my thyroid and vitamin D levels off maybe he/she could offer some info.

This week I had my pain management appointment and Friday I go to my oncologist. I cannot wait until I have my service dog to take with me to all these appointments so at least I have some company.

melissa

Bad Week!

February has proven to be an interesting month. We have noticed a pattern in my health where I start to decline in November. Usually it's slowly with February being one of my worst months. One of the ways we figured this out was how we never seem to celebrate valentine's day. This really does not upset me as my husband has shows how much he loves me daily and he is always sweet and romantic. We have wondered if it may have something to do with the season or day light savings. We don't know why but there is definitely a pattern. I usually start to come around in March, April.

This year has been no exception and culminated last Friday. All week I had been having a high heart rate(HR) off and on. I have had it in the past it never lasts long and goes away. I also have an irregular HR that does the same. Friday it began and I tried to ignore it as best I could. I was starting to drift off to sleep and awoke with my heart pounding in my chest and when I went to take a breath I couldn't. I immediately sat up, grabbed the phone calling my husband. When he answered I said my heart is racing and I couldn't breath. He said he was on his way and call 911.

Sitting up helped a little and whether right or wrong I paused and said I was feeling better lets wait a second. My other concern was our dogs. Would the paramedics even come in with 3 big dogs barking at them? My husband hung up to call our neighbor to come put the dogs away and stay with me till EMS arrived. He called and said our neighbor was out of town. He really wanted me to call 911 and if my heart would go up that high again I was definitely planning on calling it was just that I was feeling better and I have had this happen before although not that bad. I also knew I had just had an Echo and it was fine. It was Friday night and Tampa was celebrating Gaspirilla and I knew the ER would be crazy. Plus I knew they would admit me which was OK if there was something serious but I didn't want to spend the weekend if I did not need to.

Andy stayed on the phone with me his whole ride home(which unfortunately was an hour. I hate that he has to commute so far but we are so blessed and grateful that he has a job! ) I knew if anything happened he or I would immediately call 911. By this time I have gotten up and walked around and was feeling better. I already had an appointment with my rheumy on Monday and my primary on Tuesday so we decided to wait. The weekend was uneventful and off we went on Monday morning.

When she took my vitals, I was running a temp, my HR was over 100 and my blood pressure was high. I did not feel good at all. In fact I felt about as bad as I have felt. While waiting in the exam room alone, I had another episode and my husband tried to locate someone but couldn't and it was over in 30 seconds. When he did come in it was the first thing we mentioned. I then went over all my other issues that I was having and this is the condensed version of the appointment.

The ct scan they did of my chest looking for swollen lymph nodes causing the swelling in my arm which has now spread to my entire left side including my face(yeah, that looks cute!) showed that the swollen lymph nodes in my chest have gone down, (good news). Permanent scarring is worse(very bad news). My heart looks normal(great news) I have another kidney stone to big to pass on it's own(bad news). My doc believes the methotrexate shrunk the lymph nodes in my chest so I am now on the injectable. I gave my first dose today, no problem. He thinks this left sided swelling is part of the sarc(bad news) but feels the methotrexate may help. He felt my racing HR was from my thyroid being to high and as I was getting those results tomorrow if it was high, adjust my thyroid meds per my primaries prescription. If my thyroid was normal I needed to then make an appointment with a cardiologist.

To sum up my appointment with my primary, first off, my temp was normal as was my HR and BP. My thyroid was barely normal on the low side so my racing HR is not from thyroid. She feels my hip problem which I have had for months may be coming from my spine so she ordered an MRI of the lumbar spine. My MRI of my hip was clean. My ACE was high but not as high as it's been but about the same as last year which I would have guessed from how I feel.

My low vitamin D issue is still up in the air. She is concerned about the fact that vitamin D has been shown to help fight cancer so she wants my levels normal. But I do not want to be thrown into a sarc flare from hell. So I am having blood work done to break it down and see what part is deficient. We will then go from there. We also discussed going to an endocrinologist but will wait until this is all sorted out.

I now have appointments and tests out the wazoo in the next couple of weeks plus I need to have my skin cancers removed. Am not looking forward to that! The rest is just waiting to see what the results show. This last couple of weeks just show exactly how bizarre this disease behaves. One day after coming off of a bad episode and weeks of not feeling good, I am very sick. All my vitals show that and I wouldn't have been surprised to have been admitted to the hospital. I felt that bad. Later that night resting in bed I think I feel better. The next day I am much better. All vitals back to normal and I feel so much better, back to my sarc normal. I have no idea why such a huge difference except a flare. This disease is just crazy.

Andy hadn't been with me to an appointment in a long time. I hate when he has to miss work to take me to the docs. After going over everything Andy asks him if I am going to die! Now we didn't even realize it to we were both home that night talking, but he really didn't give us a reassuring answer. First he kind of made a joke and said we're all going to die, but Andy pressed and asked if this disease was going to kill me? He kind of went into that there's only so much we can do it's still such a misunderstood disease and it effects so much and they have no magic bullet to fight it with and then kind of left it at that. We tried to laugh about it at home and we often make jokes about what he's going to do when I "kick the bucket". But in all seriousness, this disease kills and it kills quickly. People are fine one day and the next they are dead. I can understand that after going through what I did. How can you feel THAT different in 24 hours?

Ah well. All I can do is be grateful I am feeling better and hope the meds I am taking will work to some degree.

Have a great weekend!

Melissa

P.S. Oh! I forgot to add, we have an appointment in two weeks to take Daisha to see if she can be trained as a service dog!! If not, we will get a new puppy and he will be trained to be my service dog. I am SO excited!

Superbow Fiasco

Well,...MMmmmnnn I really wish I could come here and just rave about what a wonderful time we had at the Superbowl. In fact I feel so very bad as both of us but specifically my husband was looking forward to this game. The good news is that there were good parts and over time our brains have the wonderful ability to allow the bad parts to fade and the good memories stick out. This has actually started to happen as we have tried to tell people just the good parts as we feel that is expected, which in and of itself is not necessarily the right thing to do, but we just felt we wanted to choose to look at the positive and I am glad we have. Since no one reads my blog and this is my place to tell it as it is here is the real story.

We have gotten pretty good at previewing the events that we are choosing to go to. As surprises can be detrimental to me, we try and have as much planned out as possible. A week before the game my Andy called about handicap parking. I made the assumption that the stadium would use the typical parking spots, WRONG! So Andy pays for a handicap parking spot and we get sent a map and diagram in the mail and it looks as if the new lot is across the street from the stadium which would have been manageable.

I was still not feeling very good right up until the day of the game but as I did not want to disappointment my Andy, even though he would have understood, I just couldn't do it. I had planned enough ahead of time to have everything ready so all I had to do that morning was put on my make-up and get dressed. Part of my frustration was that I have gained weight. When I can get up and be active I usually lose a few pounds. I hardly eat much but the complete inactivity just kills me. Since I do not go to Steeler games but wanted to support them at the stadium, i bought a new shirt and jacket(as it was cooler). I was very lucky to get what I did but I had to settle with 1 size smaller than I would normally wear. It looked OK, but for me tight. The same with my jeans, I ordered my size, but they were a little snug at my waist which is uncomfortable for me. Andy always says I wear sail pants but I like them loose fitting!

Our lunch was nice but I had a small woozy half way through which thank God passed or we would have had to head home and I had no idea how to tell Andy that. So off we go to the game. We left the house and 12:30 and it was about 2:00pm now. We headed to the stadium and didn't hit too much traffic until our map had us turn down a back road which was to take us to the parking. Traffic slowed here but we were entertained by ladies wearing next to nothing flashing their boobies and thong clad heinies at the limo's with all the guys in them. There were strip clubs and sex stores throughout that area so the guys were happy.

We finally arrive in this parking lot with the stadium across a big field and then from where we were all we had to then do was cross the street and go to the stadium. How wrong we were. At the handicap location(where we were) they were carting people to the stadium(or so we thought). We overheard it was taking hours to get a cart so we made the decision to walk. Once we got across the field and to the street that was across from the stadium, we found that they had blocked it and we could either go right or left all the way around instead of straight across. At this point I could not walk anymore. So my Andy put me against a wall listening to a street preacher and went to find a solution.

The police told us we had to go all the way back to the parking and get a cart. By this time I was already overwhelmed. My pain had skyrocketed from the walking and now we knew how much walking was going to be necessary I felt this was way out of my ability. I allowed Andy to take control and he found one of the cart drivers who agreed to take us on the golf cart. We thought he was going to our gate but he was actually taking the others on the cart to a different parking lot. Well I had to walk back across the road and got on the cart. There was still one more seat and I tell Andy to get on. Wanting to be nice in case another handicap person needed it said no. I told him again he better get on but he said he'd walk along. Since there were people EVERYWHERE and the cart couldn't go fast I thought OK. At some point he picked up this other guy who at first looked handicapped but was actually drunk. Lucky me he sat by me. The cart started taking some turns and with all the commotion Andy lost the cart. I turned around at one point after checking every few minutes to watch him and he was gone! As I thought we were almost at the gate I figured he'd catch up.

For security the NFL had tents and those things they set up for lines to walk through that zig zag(like in the airport) and SO MANY PEOPLE, that I completely got lost. Then to have him cross another street going away from the stadium to take the guys to the parking lot. At this point I asked the cart guy and he said don't worry we'll take you to your gate. So he drops them off, turns around and takes me and the drunk to the end of this long line to get through security. He realizes as we are handicapped we can't stand in that line so then tries to figure out how to get us through.

Andy had told me that they were cutting off cell phone reception near the stadium so I didn't bring my cell phone. I knew I needed to borrow one to try and call Andy but until I was at a point of not moving around so I could tell him exactly where I was I decided to wait. Finally he gets us to a security check point. We do have to walk a bit to get there but at least I was off the cart. So I go through the search, then the metal detector which I set off (where I have never set that thing off in my life) so they pull me aside and he checked me with the wondered off I'm sent through this tent.

I'm now through security and on the other side of this tent but I am STILL far away from the stadium, I couldn't believe it!! So I'm standing there looking lost trying to decided what to do and a worker asks if I need a cart to get to my gate? I gratefully say yes sp she leads me(more walking) to this area where they are picking handicapped people up with more golf carts and taking them to their gates. I overheard a lady saying she had been waiting for 3 hours. I figured I now had time to try and call Andy so I borrowed a cell and tried once and it failed, I tried twice and it failed, I'm thinking I'M GOING HOME THIS IS CRAZY! Then on the third try it went through. He was frantic. I tried to tell him where I was as the signs and maps were way disorganized. According to the signs I was in the brown, green and red section.

We agreed that I would wait where I was for the cart and if we didn't find each other to meet at the seats. But as he had yet to go through security which would take hours, I told him to tell a security person that you lost your disabled wife and to let you through. I was standing between two security entrance points(not labeled) there were no chairs, nothing so I leaned against a chain link fence and kept looking between the two. It was a miracle but I saw him. So he runs over we get in line for the cart and tell each other our dramas.

By now I was really hurting. I had broken out into a cold sweat and was miserable. The sun was going down and it was getting cold. We waited and we waited and we waited. I was in so much pain and wanted to lie down so bad. There was no where but the ground. I leaned on my cane so hard I have a bruise on my hand. As I'm standing there watching all the other "normal" people just walking around having a ball it hit me. I just can't do things like this anymore without a wheelchair. Andy had wanted to get one but I had felt I didn't need it. I just can't do it anymore. A very sad realization. I don't know where I lost the ability to walk.

I was telling Andy that I either needed a cart or an ambulance. I was sort of joking but knew I wasn't going to be able to stay on my feet for much longer. I wanted to leave so bad but again I could not disappoint Andy. Besides we had spent so much money and I decided the only way I was leaving was by ambulance.

A cart finally came and at first they said Andy couldn't get on and I was like OH NO, we did that already and I was not risking that again. Well people were standing around trying to figure out who goes where when Andy told a companion of one of the handicapped ladies who was going to just meet her at the seats to just get in then he stood on the side and told the driver to GO, NOW. We were also told when they dropped us off at the gate all we had to do was go to the elevator and there would be wheel chairs at the top. WRONG AGAIN!

First of all the first guy dropped me off at the wrong gate. I was completely on the wrong side. So once Andy and I hooked up if we had decided to walk instead of wait for a cart where we thought the gate was only a little ways away, we would have had to walk all the way around the stadium! So the cart got us to the gate, we had our tickets scanned and then asked where was the elevator? No elevator, but at least an escalator. So we walk to that, up we go and then NO wheelchair. So more walking to our seat and then AT LAST I could sit down and then THANK GOD the sponsors gave everyone a seat cushion. Andy plops me down, told me to take my pain meds and then goes and gets me some water.

It felt so good to sit down and by now it was 30 minutes before the start of the game. Since we had parked it had been 3 1/2 hours of pure hell. It took both of us awhile to calm down and enjoy where we were. I should have gone home I was in no condition to be there but I am tougher than I give myself credit for. I did have to move around a lot and I fell asleep on Andy's shoulder after halftime but the half hour before the game and the game was really enjoyable.

I knew if we stayed and watched everything we would never get a cart back to our car and besides I knew I was going to be lucky to just get out of the stadium on my own two feet. So we left a little early and got out of the stadium and asked where to get a cart. We were pointed to an area and we walked over to a whole bunch of carts but there was no one there. Andy finally found someone and they said they were VIP carts. So we walked across the street and I stood on the street as Andy walked further back to try and find someone to ask. No one knew even supervisors. Andy got mad at this point and said get a cart! Shortly we got a cart to another area where we were supposed to get different carts to go to the parking lot. So we got dropped off, and then because of things set up we couldn't see anything. There were a bunch of official people standing around and not doing anything. One guy told us to go over there and we would get to the parking lot. I thought he meant that's how we walk to the lot so I said no we need to know where to get a cart. He snapped I already told you over there. I stopped walking and turned to him and was don't you even snap at me after the day I had uh-ha, oh no! They just looked at me.

Soooo we go over and there were carts like they said, but NO DRIVERS. They said just wait someone will show up, ARGH!!!!! I sit down and check to see if the key was there, I'll drive myself, but no key, darn! Finally a handicap cart comes and we get to our car. I was never so relieved to get to our car in my life!!!

I am writing a complaint to the NFL about the disorganization considering the handicapped. Andy was talking to one of the stadium personnel and they said they got tons of complaints about how disorganized they were dealing with the handicapped, so at least it's not just me.

For me the summation of the whole crazy day is that when I went to sleep that night, i slept all the way through till morning and that has only happened 4 times in the last 18 years, so I was tired! But at least my team won!

Melissa

Tennis Anyone?

Now that football season is over with this weekends Superbowl, which we will be there and I cannot wait, I turn my attention to my second favorite of tennis. Although I've missed most of it, these last two weeks have been the Australian Open. I am excited to see my favorite Serena Williams again going to the finals as well as Nadal. For me I love that each of the grand slams take two weeks each to through the draws and now with all the channels out there I can usually see most matches and watch all day long. In addition the Tennis Channel now usually covers the events leading up to the slams so that makes for a whole lot of tennis.

I have always used watching sports as an escape from my illnesses. I remember way back during one of my hospital stays(and it was a long one) and the Olympics were on. I can say that being focused on that got me through that stay.

Once a year I still get out on a tennis court. When we go to Rockmere, we always play tennis at least one time if only for about a half an hour. I still have such good memories when tennis played such a huge part in my life. I started playing very early, about 6 or 7. When I began to play all the time was in junior high. As there were not many people my own age, I began to play in a summer league at our local park. Almost every weekday in the summer from 8am until noon, you could find me on the court. I played in high school although I played on the boys team as there was no girls, and I hardly played although I did letter.

I had a great time playing in college although it added so much extra pressure that after making it to regionals I burnt myself out. I took some time off until I began working at the Billie Jean Tennis Center which became Pennbriar and was a tennis and fitness club. Since I was always there teaching classes and training clients, the leagues would always use me to complete their foursomes when someone couldn't play. I'd be teaching my class and someone would come to the window and wave a tennis racket back and forth meaning can I play.

I was fortunate when we moved to Florida to work again at tennis and fitness club so again I could play when I was able.I miss it and would love to play again, but for right now I enjoy watching the pros play.

Melissa

Pampering, NOT!

5 days, 5 days and WE ARE GOING TO THE SUPERBOWL! We got our seat assignments about 10 days ago and as I was hoping for the 35 yard line, we got more like the end zone. Now I am NOT complaining, as we are close to the tunnel so we can cheer(or Boo) depending on who comes out our tunnel. Through the years we have sat many different places throughout the stadium and there really are no bad seats. Besides as much as I enjoy football as a sport we are really going for the experience.

This week will be a busy week for me as I haven't been out much since Christmas and that was a rough time as well. I need to get me nails and toes done as well as my get my roots done. I will get the high and low lights another day as that makes for a very long time in the chair. My mother grew up going to the salon with her mother as did I. Early on it was just new hair cuts or braids before a performance. When I was around 16, I committed the cardinal sin which I wish I could take back. One day while laying out in the sun with my girlfriend, we put Sun-IN in our hair. My hair has never been the same since and I have been coloring from that day forward.

I was lucky in that as a brunette, my hair should have turned orange(as my friends did), but mine did as the bottle said and gave my hair that sun-kissed look. The problem was I originally had beautiful subtle red high-lights(all natural, my dad is a red head). So when I was bored with the lighter color and tried to back to my natural, it never came back in as pretty as it was. So I began to color it closer to my natural chestnut color in the falls and winter and blond in spring and summer(yes, blonde's absolutely have more fun at least when you are young!). When we moved to Florida and I was in the sun a great deal, I began to keep it blond most of the time. That is what it is now, but as women on my mother's side grey very early(I am 37 and I'd guess 30-40%grey) I have to color my roots and then do high and low lights. I love the color it is now and have had it the last 8 years.

I'm not sure if I ever "enjoyed" going to the hair salon as I was usually fitting it in between clients so I never had time to relax and enjoy it. I never used to get my nails done and kept them very short. I had them put on for my cousins wedding a few years ago and liked the way they looked so I have tried to keep them on.

Now I consider the salon a torture chamber. If I wasn't so grey, I would never go back. When I first became very sick, I gave it up and had my husband help me color my hair but the store bought ones dried my hair. I found a salon I like and after going for awhile and getting to know my stylist and shared with her my illness, she offered to come to the house when I was too ill to go to the salon. That helped me out tremendously but she has moved away and I'm not too familiar with the new girl yet. So for now I go and dread every minute of it. She tries to get me done as quickly as possible and many times I'll leave with a wet head as I can no longer sit in the chair.

The nail salon is not much better. I watch all the women coming in enjoying their pedicures and manicures. Even though I am 5'5", my legs are short and I can't quite comfortably reach the stools. I count every second until I can get home and lie down. I do like getting them done because then I don't have to worry about it again for almost a month. My disease slows down the growth of my nails. Then a least I look somewhat groomed!

I really only do this now on special occasions as it has become too hard to do regularly. Just one of the many things we all take for granted that has a whole new perspective from chronic pain.

Who wants to Sleep?

Sleep. I can remember the very first night that it left me. I had just been in the hospital for surgery and my parents and I went to Rockmere(our family cottage) so I could recuperate. Up until that point, I went to bed whenever I felt like it, the next thing I knew it was morning and I went about my day. I never gave sleep any thought, I took it for granted as I did being pain free and having lots of energy. It was a non-issue as many things were now that I have had the time to think back upon and it is amazing to me the things I just didn't think about.

Back to that first night. I don't remember the exact moment I awoke, but I remember walking down the stairs and going into the kitchen. I grabbed a pain killer and something to drink and then went back upstairs expecting to fall asleep.

One of my most beloved activities is reading. My grandmother taught me the value of a good book before I can remember. I still have a list of all the extra-curricular reading I did in kindergarten when I lived with my grandparents and it has something like 60 books on it. For a 5 year old that's pretty good. I never knew how valuable and life-saving that love of reading would become.

Again, back to that evening, when I couldn't drift back to sleep, I picked up my current book and got lost in another time and place and before I knew it, it was morning. This would become my routine for now as long as I can remember. Since that evening, I have slept the whole way through the night, 3 times. 3 times in 17 years.

Now, I sleep when it decides to take me. It's never for very long or very deep, but it does come. And now there is the computer to keep me occupied for those long hours when the house is quiet and my husband and dogs are asleep beside me. I have always loved the night, that feeling of being the only one awake in the whole world. There will always be books on my nightstand no matter where I am, no matter the time, no matter what. Sleep is no longer my best friend, but a wary partner that dances around and steps on my toes. We have gotten used to our dance, but it is lacking in substance.

Good night(or should I say good morning)
Melissa

Superbowl!!!!

A week before the Superbowl. If anyone would have told me a year ago that I would be going to the Superbowl I would have called them crazy. Although my beloved Tampa is not playing, Pittsburgh is. So not only do I get the joy of watching my second favorite team play, but as Andy absolutely hates the Steelers it should be quite fun. I have already ordered a Steeler sweatshirt as I have nothing back from when we lived in Pennsylvania. I am on the hunt for a Terrible Towel. If you are a football fan or from Pennsylvania you probably know what I am talking about if not, you probably have this strange look on your face thinking what in the world is a Terrible Towel? This should explain it perfectly.
http://www.geocities.com/TheTropics/Shores/2713/towel.html

I do NOT want to like a new recruit with a new towel that I could buy for a few bucks, but want to show that I have been a loyal fan through the years. I did have a Towel that got thrown away as my husband was clearing some things out and as we are loyal Bucs fans I figured I'd never use it again so no harm. Needless to say I have every family member(all from Pennsylvania) at this moment frantically looking through their belongings for a Terrible Towel. If not I am going to have fight like crazy to outbid a whole bunch of other people on Ebay trying to do the same thing. Hey, at least I'm not looking for a pigs nose and a dress!

Bad Day

I have not had a good day today. I got up in the middle of the night to get some water and my husband had moved the chair back after taking the Christmas tree down and I stubbed my toe bad! I actually thought I broke it as I couldn't put any weight on it and the pain was sharp. back in bed, anytime I moved it the pain shot up into my ankle and my knee. I couldn't fall back to sleep right away so I watched tv for awhile. I guess I fell asleep as my husband's alarm startled me. When I got up, the foot was fine, I had no pain all day and now it's back tonight and it hurts pretty good. That makes no sense to me why it would be OK all day and now it hurts again. Oh well what are you gonna do?

I am in so much pain tonight(not just my foot)I feel like I'm losing it. I cannot get comfortable and I want to scream. I'm gonna take a nice deep breath(or as deep of one as my lungs will allow) ....in with the good energy and out with the bad energy..... Now I feel better! Of course the pain meds and muscle relaxer help!

It's a little slow jumping into the new year. I kind of think we will be on hold until after the Super Bowl. We are trying to find activities to go do down there so we can get the whole experience. I'd like my husband to go to this professional networking lunch on Friday, but he didn't seem that excited. There is a concert Friday night and then a breakfast Saturday morning. The rest of Saturday are big expensive golf tournaments and we have no interest in those which is a very good thing because they are way to expensive for us. All Saturday night is parties where the celebs and athletes will be to "be seen". We don't want to go to those because I am sure they are going to be packed. Sunday before the game is a brunch and I really want to go, but it is very expensive. We're looking at it as a once in a life-time experience, but on the other hand, we need to watch our money. I would guess we need to decide quickly as it will fill up. We still don't have our tickets.

One of the nice things researching this as done is I found where the NFL has package deals for their events. The one that interests us is the Pro Bowl in Hawaii. I found out the price for the trip isn't as bad as I originally thought so I am motivated to save so we could do that trip within maybe 5 years. Of course we would like to stay a little longer than just for the game so I need to get that coin jar turned in, see how much more I need. LOL

OK, I cannot type anymore my back is killing me, so I am going to sign off.

Goodnight!
Mel

Is It Really 2009?

2009? Where does the time go? Just yesterday I had a career that I loved, I lived exactly where I wanted to live and had a body to die for. I have never understood peoples propencity for making New Year's resolutions. I don't know if I always felt that way, or if watching others make them and then break them allowed me to see that making them are futile. I do know that I used to get a kick out of watching the fitness center fill up with people I have never seen before on January 2nd and then dwindle back down to the original numbers as the weeks went by. Our regulars used to get so upset as the new people took up room in the classes and made the wait for the exercise machines longer. They couldn't wait for all those resolutions to fail so we could get back to business as usual.



Why do people continue to make these resolutions year after year only to fail most of the time? My clients who stayed with me during all my illnesses would say at the beginning of each new year,"this is going to be your year". Unfortunately, I'm still waiting for that year!



It is very hard to watch all these years go by and still be as sick as I was last year and the year before, etc. Even though I know that's to be expected, I guess it makes it real. It's hard to know that I have almost been this ill for 10 years, a decade. Where did my thirities go? My thirties were suppossed to be great years in my life, I was suppossed to have continued to have great career success, it was suppossed to be a time of activity and living and life. Instead, it's been years of hospitals and doctors and lying in bed. Of watching more TV than I ever would have wanted, of suffering and praying for this time to be over. Of wishing I was anywhere but here instead of seizing the day.

Melissa