Tuesday, October 28, 2008


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

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

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

Good Night
Melissa

Thursday, October 23, 2008

Losing one of beloved


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

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

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

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

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

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

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

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

Good Night
Melissa

Monday, October 6, 2008

A Very Bad Day


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

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

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

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

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

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

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

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

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

Good night!
Melissa

Friday, October 3, 2008

A Doctors Visit


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

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

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

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

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

Take care
Melissa

Thursday, October 2, 2008

It's That Time Again


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

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

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

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

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

Good Night
Melissa