In The Pits Steroid Hell

• It has been 4 +years since I was diagnosed with what was believed to be a benign brain tumor.
• It has been more than three years since my first surgery confirmed it was a malignant tumor not benign
• It has been 4 years since I was diagnosed with what was believed to be a benign brain tumor.
• It has been more than three years since my first surgery confirmed it was a malignant tumor not benign
• I have completed 7 rounds of Temodar chemo and completed my third round of a new chemo avastin last  Wednesday.  I have been on the steroid decradon for going on four weeks now, it's not as high as they want the steroid but it's plenty high for my blood. I'm hoping to continue to wean off the steroid since i really feel mostly normal other than the steroid side effects.  Beyond  that, I just want to feel good again for awhile.  I am certain when i get off the steroid I can do this. I will have to see what my oncologist says next time.  i really just want a break from the steroid mentally and physically from the seroid.  mentally more than anything.

If it weren't for still being on the steroid, I thik i'd be doing really well today.  I just finished speech therapy and it was a good day for it.  Now if I can get off the steroid i think I would be feeling much better but I wILL NOT COMPLAIN ABOUT IT RIGHT NOW.  I would just love a few weeks break from it to feel strong once again.  Therapies have begun and so far so good.  WIll have better idea come Friday when my next therapy begins with PHysical.

medically - I would say that physically, I"m as strong as as I'm going to get while on the steroids.I've starrted seeing the decline in my physical  conidtion and less improvement.  I need to be sure to tell my oncologist I've leveled off and seem to be getting worse instead of better.  I would say that's a sign the steroid has done all it's going to and the rest is up to me and my body to deal with.  I know that many doctors, including my docs at Mayo, feel steroids are good, I would normally go with them but at this point I'm seeing less improvement and more decline so it's hard to honestly believe they are doing me any good.

Emotionally - A decrease in my steroid has assisted in decreasing my manic episodes by a hair.  I still seem to go to sleep begging God to take me.  I fully believe this is the steroid, it's exactly what happened before when I was on this steroid.  I would much rather not be here than deal with the mental state I'm in.  please don't think of me as selfish for feeling this way.  It really is the steroid that makes me have no hope.   Why my doctors can't see what is so obvious to me, I may never know.  Maybe they just reallydon't believe what I am telling them.  I just feel that no amount of improvement is worth whaT i m currently experiencing.  ANYONE that knows me, has to be seeing what it is doing because I AM NOT AMY, RIGHT NOW!!!!

Mentally - anyone that knows me, knows that I am the furthest thing from a quitter.  Therefore why is it so hard to not quit right now, mentally, if not for outside influences like the steroids?  I don't believe I've ever struggled as much asI am right now.

Family - season is finally slowing down for John so that should ease some of the burden from him until I can drive again.   Hopefully that time will come real soon although, I have t get off the steroid and through some more therapy before I'm ready for that.

Therapy - SPeaking of therapy, it seems to be going really well.  I have had three or four sessions of speech therapy at this point (working on memory mostly but very important work.  I've made huge improvements already.  I can actually remember things up to 20 minutes from now.  Should be interesting to see where that one ends. I may even end up in bettere position than before I got sick.  ANyone that knows me knows my memoy was never my strongest suit.

ai have not yet met with either the physical or occupational therapist but that will start this week.  I look forward to seeing what physical therapy does with me and hope that it can get me off this steroid before I lose everything I've still got.

I think the guys just pulled in so I'm going to wrap this up now.

huggles,
Amy

Steroids: Necessary but Evil Drugs

I am not typically a whiner but as I sit here at 3 AM this morning having been awaken after only 6 hours of good sleep with a sudden craving for food and to get out of bed, I figured what better quiet time then to discuss the biggest bane of my existence... steroids.

It is no secret that medical steroids cause a lot of problems with just about everyone that takes them. Therefore, I am really no exception to it I'm just tired of them already and need to vent about them a while. Might also give something for others that deal with these to relate to or warn those that may have them in the future.

A little background: I am NOT a medical doctor so anything I say here should be verified with you your own medical doctor. I am no expert on steroids just someone that has had the misfortune of being on two types during different periods of my life and is a little annoyed right now at the side effects caused from her latest 13 day and counting stint on them. (Don't get me wrong I'm happy to be on the 13 day stint of the particular one I'm on rather than one that I've been on in the past but Evil is Evil!!!)

Anyway, as this post moves along please forgive me if things don't seem in a logical way. It is a cross between the steroids, the issues I am having in my head anyway, and the fact roosters aren't even thinking of getting up yet.

So what do steroids do? They help/replace the bodies natural production of corti-steroid (typically produced by the adrenal glands) to help control swelling and inflammation. While there are several forms of medical steroids, I can on speak on my experience with two: Prednisone and Decadron.

My very first experience with Prednisone happened several years ago (6+) and for all intensive purposes was pretty good. After having fought a serious attack of bronchitis/reactive airways I was put on a 10 day dose. The only real side effects I noticed with this short of dose was general mind disorientation (I don't remember how I got to work that morning) and trouble falling asleep.

My second experience was with Decadron. Dec is a very strong steroid compared to Prednisone and uses a different formula. This is typically the first choice for those with brain swelling (such as what I get) and many forms of cancer. I went on Dec the first time following my first brain tumor resection in 2008. I was on it for a 6 week time with it gradually being tapered off. At the time, I wasn't 100% sure if all the side effects I was having were from the steroid, surgery, or the anesthesia but by the time it was over, I have no doubt that 95% of the things I discuss here were Decadron related.

I went through surgery with flying colors. I had very little if any pain, mentally I was sharp as a tack post op, and generally felt great. As the days post surgery went along, my mental sharpness fell drastically with each day to the point that some days I could barely put my words together (at the time I thought it was just my brain protesting its invasion). Then the joint weakness and pain started in. I would stand up and my knees would act like they were rubber. I couldn't get out of bed without assistance from my husband because of my rubbery joints. I was in horrible pain and had to take something than Tylenol for the first time since surgery. None of this was related to my head but to my body from something. By two or three weeks in, I could no longer climb stairs, my knees could just not lift me. I actually had one heck of a time getting in and out of most vehicles because I couldn't get up if it was a lower vehicle or climb up if it was higher. While this was a pain, it was only the tip of the iceberg and lasted for me for 2 months after I was finally off of the Dec for good.

Sleep was also an issue. Despite being exhausted from anything I did during the day, I would often spend hours laying in bed trying to sleep. I tried everything to get there. Most days I would just give up on a regular sleep routine and sleep when I could. This helped but at the same time I never got the sleep I probably needed. I guess one advantage of the steroid in relation to sleep was that when I did sleep it was a dead sleep. I don't think I remember having a dream again for at least 6 months after this. (Again something I thought was surgery related not steroid until I went on the Prednisone here again)

Moods were a killer on Decadron as well. I was very mild angered compared to some of my friends I've talked to and what they were like but I'm also a very mild angered person so I guess that's not so unusual. However, it was not unusual for me to be talking to you happy as can be, be totally sad 30 seconds later, and then unable to shut me up as I talked in circles. These were annoying... yes but concerning no. The one thing that happened to me on Dec that has made me vow to only go on it if it is the absolute last option is the manic moods I got into. I wasn't just moody but would daze and get (luckily only to myself) downright hostile. I remember more than once dropping to my knees (which is a bad thing to do when you can get off your knees) and begging God to just end it. I was doing very well physically and there really was no reason for me to feel this but I just wanted it over. This scared me a lot during this time and again I wondered if this was some horrible personality I was going to have to learn to live with since my surgery. However, after the steroids finally cleared my system, things improved until finally after six months or so, these episodes stopped.

I'm going to basically combine my current Prednisone experience with my prior Decadron experience as I talk about the other symptoms rather than repeat things. Weight gain is a huge issue for most people. It's typically not your "you eat to much now you are going to pay for it gain" it's the "gain 10 pounds for no reason and in places you wouldn't normally" gain. With Dec I gained 45 pounds before it was all said and done. This time I'm holding at 15 but it's still early.

My sense of touch and the tuning I have with my body is basically non-existent. My skin feels numb, I can't feel hot or cold, my taste buds are numb, and I can't feel how much pressure I put on anything so my poor hands take a beating when I don't realize I'm too close to something and I'm ripping skin off of my nail beds. My skin is also extremely dry on my hands, lips, and most of the rest of my body but my face is oily and getting an acne issue (which I only have problems with when on steroids). Even my muscles are always tense and I can't feel anything with them because of the desensitization of my body. My body pretty much takes over on its own when it comes to the most basic functions. Basically, if it's something it does naturally it has to try harder to alert me to it (I won't go into any more details than that).

One of the things that caught me off guard within just a few days was the change in my sense of taste. I could not touch anything that had tomato in it (stopped for a burger on the way home from the hospital and about gagged from the ketchup... Yuck), things like orange juice tasted like you had just brushed your teeth and then taken a drink of it (I love orange juice... still haven't figured out if it's a citrus thing of a tangy thing though because I can drink lemonade with no problems), soda tastes flat, and various other things that I normally don't like I can eat or vice versa. I also had a major craving for protein the entire time I was on them. Skip the potatoes give me the roast... no I didn't say a slice GIVE ME THE ROAST!!! LOL

Water retention is a big issue because the metabolism of sodium is slowed. Therefore, you try to stay on low salt but even then the water collects. It is not unusual for me to weigh myself in the morning and by early afternoon I've gained 10 pounds. I remember the first time this happened was on Dec and I was have a really cruddy feeling day. I had only been up a couple of hours (long enough to eat and do my dishes from breakfast) and went into the bathroom where I saw in the mirror that I suddenly looked 9 months pregnant from all the swelling in my stomach. This made my skin hurt bad (where's the desensitization when you need it?) and I kept thinking to myself that at least when this happens when you are pregnant you get something good out of it in the end. I later figured out that I gained 11 pounds in about 2 hours in fluid.

On the same or similar note be in weight gain or water that causes it, I often find it difficult to breathe when on the steroids. It makes my check feel like someone put a huge weight or heavy water filled sack on my chest. This is often very uncomfortable and it makes me labor to breathe especially with my history of reactive airways and bronchitis. I use a lot of my tricks from dealing with the other issues to get through this but as if everything else isn't enough? LOL

You also have moon face which is swelling in your face making it very round and moon like. I think it took well into 6 months for me finally to look normal again.

At around the time I was nearly done taking the Dec I started getting muscle cramps (charlie horses) in my calves. I had not had trouble with that since I was pregnant with my son. Steroids can mess with your electrolytes and was causing me a potassium deficiency. So, of course, out come the bananas and heat which would eventually help after you are put into tears a few times.

Energy is also an issue on steroids. They pump you up, make your heart race, make you raring to go even when your mind and body want to shut up and sleep. It's a strange feeling to be laying there without the energy to open your eyes but yet your body is running a marathon. Just another one of those joys of steroids.

I really want to believe that some of the issues I had with Decradon the first time could have been made more minimal if I had a doctor that could communicate or gave a darn. However, the NeuroSurgeon that did my first surgery was anything but that. I was never prepared for what the steroids would do at that point other than that they would probably make me moody (and this was thanks to being told by my tumor buddies not my doctor). I guess you chalk my first (and hopefully last) experience with Decradon up to learning. This time I have plenty of bananas in stock, am drinking juices to help keep my electrolytes up from the beginning instead of having to try to rebalance them, controlling my sodium and water intake, taking the proper medications to manage symptoms (gastro symptoms mostly) before they start, and maintaining just the right combination of moving and not to keep me limber and strong without overdoing it.

I do know that, while I feel like crud while on the Prednisone, my symptoms with both the more "tolerable to me" steroid and the lessons I've learned has at least made my current episode manageable. It always helps to have a good doctor that understands everyone reacts differently to medications and is able to help you get on what is comfortable and effective for you. I think there's a good chance that had he not agreed that if the Prednisone is taking enough of the pressure and swelling in my head down that I can function fairly normally and switched me to Decadron because that is the standard practice... I wouldn't be sitting here calmly typing or mentally preparing for this next surgery. I would be in a daze and technically unable to make my own medical decisions. (I still often wonder if I would have done radiation so readily after surgery if I had not been on the Decadron. I really don't think I was mentally competent enough at that stage to have been making that decision.)

Anyway, enough ranting and whining for now. I'm going to go grab another something to tie me over for a few hours then go back to bed.

Ready to Fly The Coup

There's so much craziness going on right now, I'm not even sure at what point to start. I really should have been doing this over the past several days but needless to say my brain has been shot to the point I don't even know which side is up, let alone putting it into words. Needless to say things have been a bit stressful.

I guess I'll start with things not directly related but indirectly. Last week I was taking the last of my "unpaid" days that I need to take for the year (we have to take five days of unpaid shutdown before the end of the year.) The outline of the week was like this:

• My Dad fell off a cherry picker and bruised himself up pretty good. (He's ok)
• My Grandma was admitted to the hospital because of an infection that had her neck and face swollen and red.
• I spent two days with John in Iowa while he attended training for work.
• A tornado damaged the town I used to live in. (No one was seriously hurt or killed but they lost several buildings)
• John was called into jury duty for this week.

Needless to say, it wasn't much of an enjoyable time off.

Now on the other side of things you have the issues that are ready to push me over the edge.

• Top of the list is that it is that I am still having issues with my neurologist's office. I now have the written proof of what the radiologist told the doctor at the clinic the day of my last MRI. It states just what John and I said. "Follow-up with the doctor in next few weeks and repeat MRI recommended in 1-2 months." Granted those words were not on the actual MRI report he wrote up later. I wouldn't expect them to be. These doctors are all part of the same clinic, using the same electronic patient files, etc. So there is no reason what-so-ever that they didn't see what the clinic doctor had told me. Yet they still don't seem to think that I need to have this MRI right now. Furthermore, I guess my neurologist has been in contact with my radiation oncologist to keep him updated... with the wrong information... and therefore I was unable to get an unbiased opinion about it from him either. I seriously to the point of believing that doctors are not in it for the patients in any way, shape, or form. I don't think I will be pushing matters with him any further but rather will probably be looking for someone new that has an office that actually listens to the patient instead of making assumptions.
• Then you have my famous "lie through your teeth" doctor. This would be my first neurosurgeon. This guy is almost like "that darn cat"... he just keeps coming back into my life to reap more havoc. Of course, this is the guy that told me I had a small, inoperable, benign tumor and put in my records that he would use the results of the biopsy to convince the patient that surgery is the best option.... yeah that guy. Well, I was diagnosed in August of 2007. I saw/talked to him the one and only time two days later. However, he was still my doctor in October when my second MRI was ordered. It was after this second MRI that I contacted my second and third opinion doctors. To this day, I have not been contacted by my first neurosurgeon with the results of that MRI. Both the other two doctors agreed it was most likely a benign tumor that was showing no change. So the saga continues until June when I had surgery and it was determined to be malignant. In between there, John and I were approached by a company selling cancer insurance. I explained to the guy point blank that I had a benign tumor and asked if this would be covered should it be found to be malignant in the future. I was told that as long as none of my doctors had ever diagnosed it as anything other than benign, then it would be covered. Well, I've been dealing with the claim on this since November of last year. This time they asked for the detailed billing and diagnostic of my past MRIs. This was no trouble to obtain but when I did get them, being the advocate that I am, I looked up the codes for the diagnostics. Amazingly enough, all of the codes equaled "unknown tumor of benign type" with the exception of the October 2007 MRI. What was it's code? "unknown tumor of malignant type." I admit, I haven't been able to gain my cool enough to call his office yet and ask him why it was diagnosed as this. However, there's other issues in this matter. If it's a clerical mistake, not a problem. Fix it so that I can get reimbursed on my claim. If it isn't a clerical mistake and he did feel the diagnosis was correct, then why did he not call me? As far as he knows, I have never seen another doctor on this and I'm sitting around waiting for him to contact me for my next MRI. That should have been in December of 2007!!! Therefore, if he did indeed feel that way, I have a feeling that I will be filing a malpractice suit. You don't label a tumor cancer, that you originally said was benign, then turn around and not even bother to inform the patient of it.
  
• Then you have the newest issue that arose today. After going to the psychiatrist to get my next refill of adderrall for my post radiation focus issues, I was informed that my insurance company was denying my visits to him because they said he was out of network. I went out to their website and their provider directory and right there in front of me was his name. I call the number on the card to find out what is going on. This is then when I am informed for the first time that my main insurance company and their "behavioral health" division do not use the same providers. While he appears in the medical side of it, he is not a provider in the behavioral side of it. Wow, nice of you to make that clear somewhere. On top of that, I was informed that I had nearly met my out of pocket deductible for non-network providers and so they would start covering it soon. When I looked at my profile, there is nothing that shows I've nearly met my out of pocket expenses. Oh, guess what else no one told me?!?! The behavioral side has a separate set of non network out of pocket than the medical side does. Guess I should have just known that when no where in my insurance plan does it tell me that. Anyway, my next question was then, why does it even show psychiatrist in the medical plan then? Well, sometimes a psychiatrist is seen for a medical diagnosis instead of a behavioral one. Ok, I see him for focus issues caused from brain surgery and radiation. Does that sound behavioral to you? Anyway, if all goes well, I will go back to my doctor and they will submit it as medical rather than behavioral and it will be covered. If not, I may have yet another fight on my hands or be a lot poorer!!

Anyway, needless to say I'm ready to just fly the coup. I am tired of dealing with insurance companies that care about no one but themselves. I am tired of dealing with doctors that don't have time for you. I am tired of having to fight two battles at once: One with the people that are supposed to be there to help me and one for my life!

(Don't worry, I'm fine, just extremely ticked off!!!)

To Add Insult to Injury

We picked up my son's projects from the fair and now I'm more angry than bothered about the fact that we missed the 4H sign-up for the State Fair. Not only did he get it in woodworking but he got it with his electricity project as well. Furthermore, they never announced any of the State Fair Delegates at the show (something different than they normally do) so we might not have known until 2 PM even if we had stayed. I'm just aggravated. I mean from the sounds of it, he was not the only one that missed out because of poor planning.

I can understand that maybe they just thought he was interested when he didn't show up for a single project but when he never responded when he was to go in two projects, wouldn't that have been a sign you might want to contact him and see why he wasn't going in either project. In addition, what about the remaining 15 or so kids that didn't know they had won because of the way they did things this year? Didn't anyone see this as a bit suspicious? I guess my county will just be shy A LOT of representation this year.

I think I'm beginning to see why I remained in my original county for 4H instead of changing counties when I moved. My original county had their act together and everything ran smoothly. I remember the year I won in three projects, they wouldn't let me take them until I had picked the one to take. Heck, we had to make the decision the day of show for his projects. I hate that the county show is so close to the State deadline. It really does not give much time and for those of us that are unable to stay for the entire show and/or don't go to the county fair, we don't really know the results until after the deadline.

Oh well, I guess. It just sucks that he had two great projects and doesn't get to show either of them. I'm going to try to call the State Fair and see if there is any way I can get him into it with his woodworking even though the deadline is passed. Even if they "disqualify" him in the end, if they allow him to do it, I will feel much better. Maybe they will be understanding of the situation. Then again, I'm not sure anyone is understanding of anything in this state.

Anyway, if you see my son, please congratulate him on his two wonderful projects. Even though he probably won't make it to the fair, I'd like him to feel good about doing it. :)

Looking For MY Bailout Plan

Banks get one...
Auto Manufacturers get one...
Our local grade school gets one...
In a round-a-bout way, my employer gets one...

Yes I understand the economy sucks. Yes I understand that I should be happy that we both still have jobs and that we are not in any financial danger at the moment. However, I think it's time that those who ARE financially responsible get their bailout.

I'm not even going to get into the very controversial and public bailouts of the Banks and Auto companies. It's too broad and I don't have the energy to cover it. They got their bailouts... 'nuff said.

Our tiny little school, that should probably give into the inevitable and consolidate with another school now while there are many options open to them, got a bailout. Their bailout is in the form of a referendum that passed that will raise MY property taxes even more than their already over-inflated cost. All the other schools in the county do it on much less than they received BEFORE the referendum. Somehow I'm not sure that putting a bandaid on a broken bone is going to do much good. I refuse to dive any deeper into this subject. They got their referendum... their bailout... 'nuff said. (Note: Now that the referendum has passed I will openly admit that I voted against this bailout. There were a few teachers at the school that I hated to see lose their job if the referendum failed but that is the only thing I saw positive about it. Remember that everyone is entitled to their opinion and I do not wish to see flames on my blog over this. TIA)

My company is getting their bailout as well in a kinda sorta way. Between laying people off permanently and making everyone left take unpaid leave and pay reductions, they are essentially getting their bailout as well.

So tell me, where is my bailout? The cost of everything from electric rates to stamps are going up. My property taxes are going up. My health costs are going up...

We've made it through our own economic hardships that have occurred yearly for the past five years. I mean we survived losing two months of John's paycheck two years in a row, having to come up with additional money for our house when the idiot that sold it to us screwed us over, and the horrendous doctor bills of the past 12 months. We managed to keep it together and make ends meet and still be able to cover car troubles, medical expenses, a septic pump going out, and now our pressure tank. This all has been covered while I am getting the 10%+ pay cut and having to pay out more.

Why am I doing so well and big businesses (and schools) doing so poorly? I think it all has to do with common sense. You have to plan for the down times, have plans of attack set up, and be willing to think outside the box. Yes, sometimes you have to sacrifice as well. Do CEOs really need million dollar bonuses? Do people really have to have private jets to go only a few hundred miles? Should we pay to support things that might be better off being let go? I know that I am prepared to sacrifice. I don't rack up huge debts to buy the ATVs that my family would love to have, the new flooring we desperately need, or even hire someone to do repairs around our house. If I don't have a cushion to fall back on and have the money in excess, we don't do it. Why are the people we are bailing out not having to make these sacrifices? Why is it that those so far in debt they can't live get "bailouts" but those of us living in our means go without? (This is directed towards normal people who live outside their means with the assistance of credit cards. Bankruptcy is a bailout if I've ever seen one.) Again, an argument for another time.

While they are getting billions, what is my bailout?

My merit increase was non-existent as part of cuts taking place where I work. Due to the layoff of my co-worker, I now have more responsibility and work. My pay has been cut by at least 10-15% because of mandatory unpaid shutdowns. My bailout is simply... at least you have a job.

Sure. A job. Twice the work... 10% pay cut... A job...

I guess, in conclusion, I'd like to see a REAL bailout any day now. I'd be happy with just the difference between what I should be making and what I will make this year... that's a heck of a lot more reasonable than the money to pay the outrageous debts caused by poor decision making. I think it's time to reward the responsible... not the irresponsible.

It's Always an Uphill Battle

Caution Vent, read at your own risk.

Don't get me wrong in this vent because I have a good life and I wouldn't trade any of it for all the money in the world. Although I am mad at him right now, John is one of those hubbys that do help around the house and I shouldn't be complaining. It's just unfortunate the places he likes to help isn't what I NEED but rather what he feels like doing. I'm sitting here right now eating my breakfast and decided, unless I want to spend the whole day pissed off, I'd better write in my blog while I have the chance.

In preparation for Christmas, I haven't gotten everything I want done, but I'm getting to the point that it's manageable and knocked some things off the list that don't really matter. (Who cares if my computer room is still a disaster? I can't exactly do it without my shelving and John was unable to finish that before his surgery and he's out of commission for putting them up now.) All areas except the Great Room and Kitchen are finished. I have cleaned the Great Room at least a dozen times but you would never know it now. (I have decided to just do it right before company gets here tonight and again Tuesday morning after we open our own presents. Then it has a fighting chance.) I realize John had surgery three days ago but sitting around playing video games and laughing at the TV is not helping my motivation. I should give credit where it is due, he did start a project last night when the leak in my sink that has been unfixed for months finally pushed me over the edge. However, he didn't finish it and now I have all the items that are normally under my sink all over my kitchen floor waiting for a home.

As if that wasn't enough, my son woke up this morning coughing his head off. It looks like he's come down with bronchitis. Nothing new, he or I are usually down with it for Christmas. So John is on his way to town with him to take him to prompt care. However, not before pissing me off even more with his comment, "You owe me one for this," after I asked him to take him. Just what is it that I owe you for?!?!?! Taking YOUR son to the doctor??? He acts like it is such a huge inconvenience for him. Sorry that it's cutting into your game time!!! It's like he is the only one who's Sunday plans are screwed up. I wanted him to finish my dang sink. Instead, I was under there before breakfast sanding down the sink and setting up a heater. Like I don't have other things I need to be doing. To top it off, we have had a rogue mouse going through my cabinet drawers, so guess what all needs to be taken out and cleaned today? Yep all of my silverware, cooking utensils, etc. I need to be getting things prepared to cook. I need to be cleaning out my fridge to put stuff in. I need to be doing a quick sweep of the kitchen. I haven't wrapped a single present yet. All this and my mom, dad, and brother are coming over for Christmas tonight. I'm not busy at all though. (Note the obvious sarcasm)

I asked him before he had surgery to clean my ceiling fans for me. Still not done. I asked him to finish the edge in my bathroom. Still not done. I asked him to take a paneling sheet out to the garage. Still not done. I'm not real surprised. He has to do things like this on his own schedule not mine but I don't have the three years to wait for it to get done. oh well. I will still get my ceiling fans cleaned if I have to do them myself.

It always seems like it is one thing going wrong after the other when you are preparing for holidays. I could go on and on about things to vent today but I've finished my breakfast now and I've got a ton I still need to do so I better wrap this up and get work done while the boys are gone. At least with them gone for the next hour I can work on my kitchen without John wanting "lovins" all morning. As if it wasn't bad enough that he didn't want to cuddle with me last night when I was a little stressed out, he's been all over me all morning. UGH. Sorry it's a two way street here.

All I know is I hope I'm a very long way from surgery otherwise this house will likely fall apart while I am down. *Sigh* If I don't get back, Merry Christmas.

They've Decided I Didn't Exist...

... before the age of eight. This story will be one more in support of getting your medical records as early in your life as possible. I highly recommend it. Adults... this means now. Parents... this means get your child's now.

Anyway, so here's the story. Yesterday I had finally received my medical records. In looking at them, I discovered there are no records there for the time before I was married. No big deal. My previous doctor still has an office so I called over there and sure enough I could pick up my records today. Great!!! I knew as soon as I picked it up, something was missing. It was just way to light. So what's missing?

You see, here's the story. My first pediatrician was a wonderful doctor. I saw him through my struggles with tonsillitis, both allergic reactions (penicillin and codeine), my problem with anesthesia, the early history of shaking issues, etc. Unfortunately, he decided to retire. My records were transferred to another doctor. We were with the second doctor for two years... during which he attempted to kill me three times prompting my mom to change doctors again. All of my records were supposed to be transferred to my new doctor. He said they were. Mom believed him. So what's the problem?

Well, apparently his idea of sending my records was to write a one page summary giving my birth weight, immunization history, and a barely legible note that I had an anesthesia disorder when I had a T&A on 11/81. (Tonsil and adenoid) This was all he sent to my doctor. None of the records about my allergies. Nothing about the two neurologists I was sent to about my shaking. No history of why I had surgery and what the outcome was. NOTHING. Now I can understand sending a simple summary such as this for a child whose worst problem is an ear infection but not for a child whom probably had a thicker record than a 20 year old!!!

So anyway, all my medical history prior to my 8th birthday is now gone. (I haven't fully given up but I'm guessing it's been long destroyed even if I can find the doctor all the records were transferred to when he retired.) I don't know that there would be anything in those records that could shed some light but I can't help but feel like a part of me is missing without them. That small chunk of my life that now can only be recalled by my family and that's assuming their memories are up to it. I now may never know if my shaking disorder as a child was in any way related to my tumor. I guess there's worse things... it just really sucks right now.

So again, I plead to those of you out there... Get your records in order now. Contact your doctors while you know where your records are. If you have kids, get them a file started. It just might save a lot of headache some day.

Sometimes Better Off Not knowing...

Ok, well not really but in this case I was nice and calm and prepared for next Friday until I received my medical records from my neurosurgeon. UGH, is all I'm going to say as I sit here extremely pissed. At least from this point forward, I will be requesting the updates at the time of the visit so there won't be weeks of relying on questionable data again.

So here's the scoop. Today I FINALLY received my medical records that I requested 6 weeks ago. I quickly found out that they don't include the MRI scans that I really need but that's been sorted out. For those who may be going through the same thing as me, you have to request your MRI scans separately from the radiology department. Records will not provide the copies of your scans.

Anyway, so I review through my records to see if I can find any inaccuracies and to make sure I've located all the information that I'm particularly interested in. Well, I find a very interesting inconsistency right off the bat starting with my very first appointment with the neurosurgeon. John and I both remember him vividly stating that he would not operate on it on someone my age, based on its location. Is this what he wrote in my records? Hell no. His words, "I have recommended that she consider an image-guided biopsy to try and determine a diagnosis. It may be amenable to resection, depending on grade, if this tends to be a glioma." Does that sound anything like what he told us?

I have my theory on why he said it and it doesn't please me one bit. In my record with my GP, it was indicated that I was insistent that surgery was not an option. He saw this. He knew that if he came out saying that surgery might be an option, he would lose me for any and ALL tests. Interestingly enough, even other records from phone conversations, continue to lead to this "surgery is not an option" approach. Why do doctors see someone, who they know wants the truth with no punches pulled, and insist on giving us what we want instead of what they really think? It annoys me, because now I really question whether they will even consider Gamma Knife for me if I am indeed a candidate for surgery. Doctors, of course, would much rather operate and "remove" it then do something that in the long run is better for the patient. (Mentally as well as physically in this case.)

I also find a kick out of the "Recommendation". He states in there that he talked about the risks of surgery including bleeding, infection, and anesthesia. Funny enough the only thing we recalled about the "surgery" (which I'm assuming is the biopsy since he said surgery wasn't an option) was that there is a less than 1% chance of anything going wrong. Again, he contradicts himself because even in their notes on the phone conversation when I asked about the biopsy and symptoms, he states that there is little chance of problems from it... yet there's this chance of bleeding... infection... argh. Can you tell I'm pretty pissed off right now?

And just a side note, from this point forward I am going to be asking for the permission to use a voice recorder in all future doctor's appointments on this subject. Then that way when they try to say that's not what they said...

Venting: A Girls Sanity Gift

Ok, I'm in a venting streak today. It was on August 30th that I requested my medical records. Guess what I still don't have? Anyway, I contacted the records department today to find out the holdup. (Legally I could sue because they did not complete it in 30 days but I really don't have the energy for that endeavor.) Well, it appears that my general doctor is the holdup and hasn't yet submitted his stuff. I love my GP dearly but some days his office can truly annoy me completely. Maybe it really is time to think about changing doctors whether I really want to or not. Not only is this a strike against his office but he made some poor decisions in the past that caused a lot of unnecessary headache (This isn't even counting the mistake with the size of the brain tumor.) I don't know, I guess there may be a few doctor's who need replacing in the next few weeks.

Oh speaking of brain tumors and doctors... can you believe that his office charged me and my insurance for the appointment when he told me I had a brain tumor? For all the good the information he gave me was, I would have just as soon heard it over the phone and saved the $15 copay. That is truly annoying but too late now.

It's sad when I'm so ticked that I can't even keep a post flowing smoothly. Maybe I better wrap this thing up and try and get some hot tea or something. I really need to calm, I can see that my blood pressure is a bit up. (Yes, I can see it, my arteries/veins are standing up on the back of my hand and that only happens when it is up. They aren't throbbing yet though so it's not dangerously high.)

Hugs