Friday, July 25, 2008

Fate Intervened One Year Ago

It was one year ago today that my brain tumor journey unofficially began. You see, it was today that I ventured out a bit early to pick up my son from his summer camp a little early so we could get to the 4H office to drop off his project for the 4H window display. After doing this, we both were a little "energetic" when we got home so we decided to blow off some steam and toss the baseball around in the yard. We'd played for around a half hour or so and we were tossing some hard grounders at each other. Needless to say, I'm not 16 anymore and my reflexes proved it when he threw one that took a hop right of the heal of my glove. It hit me square in the left side of my mouth and it smarted pretty bad. I know I said a few choice words and we decided that was probably enough for the night.

Anyway, I didn't think much of it. I put some ice on my ever bulging lip and we carried on the rest of the night. The swelling stayed down and really it was just that nice fat lip feeling with a little numbness on both sides of my face for some reason. Again, I didn't think much of it. After a week, all traces of the fat lip were gone other than I realized that the right side of my face was very numb. So numb in fact that I burned the tar out of my mouth eating chili because I didn't realize that it was hot. The inside of my mouth was numb and I didn't realize it. Since I had a history with a whiplash type injury in my neck, my thoughts immediately went to that. I figured I had messed something up in my neck when I was hit. Sooooo... off to the chiropractor I went where we decided it wasn't my neck but rather what appears to be an inflamed trigeminal nerve. Thus the start of my journey began.

Fate made us play baseball that afternoon. Fate made that ball hit me in the face. Fate set off the chain of events that would eventually lead us to where we are now. My angels were looking out for me that day.

Thursday, July 24, 2008

The Week In Review 7-25-2008

This is really the third week in a row... Yay!!! (I'm actually posting this on Thursday since I won't be around much on Friday.)

We are now 6 weeks and 3 days past surgery. That's 45 days. Wow... doesn't seem possible.

Medically - Still no luck on establishing contact with my new NeuroSurgeon and my old one didn't reply to my question about my pathology report either. I'm really anxious to get this report before I talk to my NS. I'd like to research it before we talk with him so that I understand what it says. This is how I learned so much about my MRI scans and the like as well. Lots of research. Anyway, I'm a bit aggravated at this turn of events but I guess I'll deal with it when we are face to face in Chicago. I will not be leaving without email addresses.

The swelling continues but it appears to be very slowly improving. My face hurts but I'm not sure how much of it is runny nose caused and how much is swelling induced. Although I feel most is swelling induced. I still have occasions where I look 9 months pregnant but they are becoming less frequent. My feet and hands have been minor for some time now so that's a plus. I still feel pretty crappy from it all though. I am drinking plenty of fluids but... well I'm hoping it goes away soon.

In other news, I think I'm trying to come down with bronchitis. It's in its early stages at the present but the cough is definitely there. Luckily, I'm far enough from surgery it's just an annoyance and I don't think it can cause any problems. I'm sure the steroids weakened my immune system enough for me to get this rare middle of the summer attack but at least it waited until I reached my full 6 weeks. Again very uncomfortable but it's that in the best of cases.

Emotionally - Other than a few cases of complete frustration, I have been doing well emotionally this week. I'm very frustrated that I have either not had the motivation to get them or the contact with my doctors. I want a very tight team working with me and they have to be willing to answer my questions no matter how much they think the answer doesn't matter. If I am asking the question it matters to me so answer it already. The other thing that has to be established is that I want all written records. These are my way of making sure that everything is truly going as it is said. They are very important to me. (Now I have to figure out how to get these at this institute.) Lastly, they have to be willing to listen to my concerns, fears, and ideas on how I think further treatment should go. I have in my mind what I am willing and unwilling to do and they have to work with me on these. I am not one to accept the first treatment plan put in front of my face. I will research it and I will know in my mind it is the best option for me and my family. I already get the feeling this might be a struggle but we will get through it and our options will be taken even if I have to see a dozen doctors to find someone that agrees with me.

Otherwise, I'm just cruising emotionally. I haven't had any major down times other than just feeling really crappy but that's not the same thing. I have been a bit snappier than normal but again I think that's related to feeling crappy.

Mentally - I still struggle with motivation at the present. I'm hoping this improves with time and is related to my physical side and not my mental. I will say I am going to do something and ten minutes later I am still sitting there staring into space. I do that a lot and it's not just for ten minutes sometimes. I have always been a procrastinator but there's a big difference between waiting until you have to work your tail off to finish something and to not have the will to do it.

I am happy to say that I was able to retain more Harry Potter trivia than I thought. In our quidditch game on Friday I knew a good majority of the answers so that means my mind isn't as warped as I thought. I have struggled with doing my brain games daily like I set out to do. I think it's been at least two weeks since I did any. OOPs. But I've been busy too so...

Physically - About the same as last week although my energy is slowly coming back. I was able to catch up on dishes finally and my son and I were able to get the house presentable again with him working under my instruction. Otherwise, the swelling is still there but not quite as bad.

My knees appear to be coming back. I was down in the floor helping my son with a 4H project and I was actually able to get back up with help. I haven't been able to even get off of one knee unassisted since about one week after surgery so this is a good sign. My knees are regaining their strength!!!

Family - John has been having trouble sleeping of late. I think he is just major stressed out. Hopefully things will ease some after we get some answers at the doctors on Monday. (That and after 4H shows are finished. Unfortunately, most of my son's projects got sidetracked because of me and the surgery so we are last minute some of them. UGH)

My son is busy with 4H and not wanting school to start soon. He will be a 6th grader this year. YIKES!!! Where has the time gone?

Play - Again not much in play this week. We did have a mini birthday for my mom last night for her 50th and we plan on visiting some friends on Friday including my coworkers. I look forward to some adult conversation. We also have a square dancing convention this weekend. I won't be dancing but it will be fun to watch and we are chaperoning the youth hall for a few hours. It will be a fun time even if we have to cut it short so I can rest. Hopefully, the weather is nice this weekend so I can curl up in the back seat of the car with the windows down to nap if nothing else.

Oh and for the heads up to my coworkers who get/view this... I will be around Friday morning to visit. I may be up in IT for part of the time but I will try to walk around if I'm feeling up to it. I will try to be in the cafeteria during breaks and I'll probably be nearby during lunch.

Monday, July 21, 2008

What I Would Do Differently

I'm just sitting here procrastinating working on what I really need to so... Here's the question I asked myself: If I had to do surgery again, what would I have done differently?

1. I would have cut my hair a lot earlier. This would have given me more time to get used to the length of my hair before surgery and thus brushing it now would have been less awkward.

2. I would have brought the list of questions that I asked my NeuroSurgeon with me to ask the "replacement" NeuroSurgeon prior to surgery. Then maybe a few of the things that I was surprised at after surgery wouldn't have been a shock. What questions in particular? Where would the incision be? How much would you shave? What if any anti-seizure meds will you put me on? What is the plan for recovery both in the hospital and at home? When will I be allowed to get up after surgery? What can I expect following surgery? Ok, that is enough because it would take about two feet to list them all.

3. I would have gotten my surgeon's "right hand man's" email while we were in the hospital instead of waiting until later.

4. I would have insisted that my questions get answered before I left the hospital instead of them being brushed off. They might not seem important to the surgeon but they were important to me.

5. I would have given John instructions on what to ask and to be persistent with them. I was just too foggy when leaving the hospital to keep pushing.

6. I would have tried to slow down a little more in the early days after surgery and relaxed. Unfortunately, I felt good and staying in bed didn't so... I have a feeling I'm paying for that decision now.

7. I would have asked more questions on the steroid and its side effects. I was not expecting to have more problems once I was off of them than when I was on them.

8. I would have implemented gentle exercises for my legs (including knees and ankles), arms (including elbows and wrists), and back (especially neck) from the beginning. I think this would have prevented some of the weakness in them and my muscles. I would have also continued my walks as much as possible. I would have had to listen to my body and stop when I needed to but I would have hopefully kept as much of my stamina as possible.

Ok, I think that's enough. I think that rounds it out nicely.

Friday, July 18, 2008

The Week in Review 7-18-2008

Wow, two weeks in a row... I might be starting a trend...

We're five weeks three days post surgery now.

Medically - I haven't made any further progress on establishing email contact with my new NS and his team. Something tells me I will be trying to move back to my other NS as soon as I can arrange it. Even if he wasn't the one to operate, at least he took an interest in me and took the time to answer my questions and the like. I'll send another email to my contact and see if I can start getting some preliminary answers before my appointment on the 28th.

In other medical areas, I saw my GP twice this week because of the swelling and the leg pains. We wanted to rule out a blood clot with the leg pains and the good news is that we are pretty certain it is just the potassium deficiency causing it not a clot. He doesn't seem too concerned with the swelling unless it is in the legs so I guess I'm on my own there. UGH.

Emotionally - I did have a few moments this week of second guessing my decision to do surgery. I have felt really crappy all week from the swelling and I'm sure that is what fueled these thoughts. Otherwise, I have been holding up pretty well. I am looking forward to hopefully getting at least a partial release when I see the NS so that maybe I can start getting used to my new normal a little bit. I long ago accepted (even before surgery) that I would not be the same after I had surgery. I don't think it is possible to go through something as major as this and come out exactly as you were. I mean you really do learn to appreciate life a little more and think about things in a little different light. There are also other little things that I have picked up on but the truth of the matter is, I may be a little different and look at things a little differently I'm still Amy in the end... just a slightly improved Amy. I will return to normal... it will just be a slightly different normal than I knew before surgery.

Mentally - My clarity continues to improve with each passing day. I am able to focus with much less concentration and greater ease now. I was actually able to think enough to do some basic computer troubleshooting this week. That's the first time since surgery that I've had the ability to think in that manner. This is good and important since that's what I do for a living.

My short term memory is pretty out of whack right now. I keep forgetting things. I can't really say at this point if it is better or worse than before... maybe it just seems worse. (I have always been bad about starting something and then getting sidetracked with something else or walking from one room to the other and having no clue what I was going after.) I need to get back in the habit of just writing everything down when I think of it and then I have it.

I'm sure it is just caused from too much going through my mind but I've noticed other weird things that have affected me. For instance, as some of you know, I am a huge Harry Potter fan. I have been part of a HP online community for almost two years now. One of the things we do on there is play the wizarding game of quidditch using Harry Potter trivia. It's really a fun site if you like Harry Potter. Anyway, I have always been pretty good at this because I have always been good with answering things about HP. I have apparently lost my ability to do this. How do I know? For some reason I was trying to remember the names of the two "goons" that hang out with Draco Malfoy. I actually had to look it up because I had drawn a complete mental blank. So much for playing quidditch on Friday. I hope it improves but it's an example of things that have just escaped me. I am hoping my brain is just rebelling a bit and saying I'm tired but time will tell. (Wouldn't it be horrible if they removed a section that was the Harry Potter part of my brain? YIKES!!!) P.S. For anyone interested in checking out the site I am talking about it can be found at:

Physically - This was a very rough week physically. To make a long story short, I'm the type of person that apparently has more problems withdrawing from steroids than taking them. This week I have struggled with muscle cramps and major swelling over my entire body. I have had swelling in my face for over a week now and occasional swelling in my legs and arms. I have also had a couple of episodes where my stomach swelled to the point that I looked 9 months pregnant and ready to pop. (It actually got so bad you couldn't see my stretch marks from having my son because it had the skin stretched so far.) Basically, it was a pretty uncomfortable week and I feel like I've taken a few steps backwards in recovery. However, the doctor's aren't concerned with the swelling as it's just caused from the steroids. (You can read more about it by reading this blog entry... Steroids.

I had to slow down a lot this week because my body just didn't have it. It is protesting big time to the swelling. However, I have continued to improve my strength but I am getting some pain in my knees from the cartlidge that still hasn't fully healed from the steroids. I am hoping that will improve soon. (I have bad knees anyway so it's hard telling what the steroids did to me.)

In other physical news, my incision site appears to be completely healed at this point and the scar is already starting to go down and is harder to see. My hair that they shaved is a good quarter inch long now so it is growing very fast. I have moved to being able to use nothing but a ball cap now to hide it. I don't have to tie a bandana or anything like that on it just put on a baseball cap. (I don't think I've posted much about this. Basically, they shaved the front quarter of my head for surgery... yes this is more than they initially told me but I'm cool with it. Needless to say, I need to learn some techniques of hiding it in public. I'm learning but for now ball caps are easier.) For those interested, I will post a picture.

Family - The boys are still doing well. My son and I haven't killed each other yet so that's a good sign. This week he is getting things finalized for the remaining 4H shows that will be coming up soon. He's still got a bit of work to do to get ready.

John had to miss a lot of work this week because of taking me to doctors with this swelling. Luckily, he's not extremely busy at work right now so he was able to do so without any problems.

Otherwise both are doing well and I just look forward to being able to drive again soon. I love my boys but being with them 24/7 is starting to take its toll on me. I might just have to make my daily walks venture further than several times around my house. Maybe I can call my neighbor and we can see how far I can go before going too far. I can always call John to come pick me up.

Play - Still no play this week. We're pretty much sticking to things that have to be done at this stage. Although I am considering sending the boys to town one day to do something fun... just haven't decided for sure yet. I may join them but I'll probably just stay home and enjoy being by myself for a while.

Ok, that wraps it up for the week. I can't think of anything else really to write.


Thursday, July 17, 2008

Steroids - The Necessary Evil Drug

Well, I have now been off of my Decadron Steroid for one week. I had been on it for a month total including the "taper down". I've decided that steroids suck. No other way of putting it. However, I know they are the necessary evil. Without them things could have been much worse. For those that don't have any clue what I am talking about... I will explain.

Following surgery in the brain, one of the problems that can arise is swelling of the brain. This is a very bad thing in the brain. The brain is in the cranium which is an enclosed hard protective area that does not expand. When you have surgery in other areas of your body, the area can swell and expand as needed. In the head, that can't happen without causing a lot of pressure. In order to make sure this swelling doesn't occur, patients are given a steroid following surgery.

Steroids are notorious for causing lots of various side effects. Some of the effects I was warned about by other brain tumor surgery patients were severe mood swings, 'roid rage (where you would just get into a rage of anger for no apparent reason), weight gain, the need to constantly eat, among other things. I was pretty lucky and didn't experience most of these symptoms while on the steroid. I did experience others, however, including joint weakness, insomnia, major acne, and total loss of taste. Reading and researching on the internet now, I see there is a huge list of other side effects that are pretty nasty that can be experienced while on the steroids.

I was prepared for the steroids to really suck but what I was not prepared for was how lousy I would feel when coming off of them. Apparently it is not uncommon for some to have symptoms caused from being off of them. Withdrawal if you will. Anyway, this week I have had major problems with swelling and potassium deficiency. As for the swelling, I have what they call moon face at the moment. My cheeks are puffed out and you can't make out any of my features or feel my bones. I also have a "hump" in the back of my neck from fluid build-up. Furthermore, I am getting intermittent swelling in my feet and hands. However, the most bothersome is that I am getting swelling in my stomach. Yesterday, I literally looked like I was 9 months pregnant. My stomach had swollen to the point that you couldn't even see my stretch marks from my previous pregnancy because the skin was stretched so tight. I put on 8 pounds in 6 hours from the fluid gain. Basically because it is from the steroids, it just has to run its course. No one seems worried about it but it is soooooo uncomfortable.

The other issue that has arisen from the combination of fluid retention, various drugs that were in my body, and who knows what is a potassium deficiency that was causing really painful cramps and pains in my legs. Luckily, increasing the potassium rich foods I eat has helped that so far. We are waiting on my bloodwork to see if there is anything else that is out of whack but so far that is the plan.

So I guess the purpose of this post is that I realize steroids are necessary in certain situations but dang they suck. Oh and worst of all, I've actually found places where people stated they had the swelling like I have for 3-6 months after coming off of them. Luckily, they were on the steroids much longer than I was so hopefully that won't happen with me. I know it sucks when you feel worse at the five week mark than you did in the first week after brain surgery. With any luck, I'll be able to go a very long time without having to deal with steroids again. Also, now that I know, maybe we can try some other methods of tapering to try to minimize the "withdrawal" symptoms. Not sure if it will happen or not but it's worth a shot.

Tuesday, July 15, 2008

We Should Have Results Tomorrow

Hey all, just wanted to post a quick update as promised. (Yikes twice in one day)

I went in to the doctor today to have the swelling and leg pain issue I've been having checked out. We don't have anything official yet but they did do some bloodwork and we should have the results tomorrow. The good news is that they are pretty certain there isn't any clots and they are pretty sure I just have some electrolytes or something still off. They are guessing all the fluids they pumped into me in combination with the meds just have something out of whack. We'll know for certain tomorrow.

In the meantime, they have me trying a few things to help increase the likely culprits. As for the swelling, they gave me some suggestions to help reduce it but it will just have to run its course. Apparently there really is two types of people when dealing with steroids... those that have the problems while on them and those that have problems getting rid of them. It appears I fall in the latter category. Depending on what they find with my numbers they may prescribe me something to help the process along but they need to find out what is off first.

Ok, I think that's all I have to report for now. *Huggles*

We're Five Weeks Out Now

Five weeks ago today I was in surgery to have my brain tumor removed. Part of me feels like there is no way it's been five weeks and another part of me can't believe that it's only been five weeks. I guess it's just one of those things.

In technicality, I am scheduled to return to work next week but since I haven't seen my doctor yet, that will have to be pushed out another week. (Note to self, if you haven't heard from your short term disability you need to find out what is going on.) I'm not sure I could return to work yet at this point anyway. I'm building my stamina at this point but I'm still pretty weak and I'm at about 5 hours of activity before I have to lay down. Anything over that and I start getting a little... weak and uneasy and I definitely can not afford to fall at this point in time. (Which brings me to the other thing of I am unable to get up off the floor if I did fall. Don't ask me how I know but it wasn't a fall just a weak thinking moment.) Don't get me wrong, I'm actually looking forward to going back to work but right now I'm still enough in recovery mode that I'm just not sure what I'd be able to handle. We'll have to see what happens.

Let's see. At some point today we are going to go have a venous doppler done on my legs. I woke up yesterday morning with an awful pain in my legs. We are hoping that I'm just having some muscle spasms from officially being off the steroids but they want to rule out a late breaking clot. It's better to be on the cautious side. I am also hoping to get into my GP and if everything is good on the doppler, get a dieretic or something for this darn swelling. It is really starting to get on my nerves and when there is something that can be done to combat it, what's the use in dealing with it?

I will say I am happy to be mostly back to normal as far as mental capabilities go. Believe it or not the thought of being on the computer turns my stomach right now (not a good thing when you work on them for a living) but other than that I'm just as sharp as I have always been. About the only major thing I've noticed is concentration and motivation. It really takes a lot of my concentration to do most tasks. I have to really set my mind to things and give it my complete focus. Multi-tasking is not one of my strong suits at the present but I'm sure that will come back with time. I am only five weeks out after all.

Ok, this ended up having no real rhyme or reason so I guess I'll wrap it up. I have my first follow-up with my NeuroSurgeon next Monday and I'm sure I'll have tons to report after that. I am also determined this week to finish writing out my "surgery experience" and I have some very special pictures to post soon. FrankenAmy anyone? Anyway, talk to you all soon. *HUGGLES*

Friday, July 11, 2008

The Week in Review 7-11-2008

Wow, a weekly update that will actually take place on the day it's supposed to. I must be starting to get back to normal. (Ok, who am I kidding I was never good at getting my weekly updates out on Friday.)

Medically - Well, I finally got around to trying to start communication up with my new set of doctors just as I had with my first choice NS. We haven't really gotten far yet but at least the ball is rolling now which is a good thing. Basically, there is nothing new on the medical front other than continuing to recover here at home and feeling stronger each day.

Emotionally - If you don't count the very rude and unexpected call from a bill collector last night, I've been holding up very well emotionally. I completely lost my cool with the person yesterday but the truth is it was justified and I am hoping to give them another piece of my mind when I am feeling better. They were... well, let's just say that I'm glad I don't usually deal with bill collectors. I'm not going to get into the issue right now but I'm sure I'll blog about it later. It has to do with insurance companies, doctor's offices, and rude calls from collectors at 7:30 PM. The good news is that I sorted it all out today and they actually owe me a credit... just as I thought they would so the case will hopefully be closed within the next week.

Beyond that, I'm pretty emotionally stable with just the occasional out of character event but even that is mostly because I overdid it for the day or just let myself get too stressed. Not a big deal and nothing beyond what a normal person has. (Yeah right me a normal person....)

Mentally - I'm much clearer mentally this week. Most of the drugs are at their minimums now and actually tomorrow is my last day of the steroid. Do I hear whoops of joy? I was actually able to sit down with my finances this week and get everything sorted out and the bills laid out to pay tomorrow. I will be very happy to have all the paperwork caught back up and be able to see that I really did have things planned out so that it all ran smoothly. Then maybe next week I'll start checking in on insurance things and make sure the right people get paid the right thing and we don't end up in collections again for something that isn't even my fault. It's sad you have to stay right on top of your insurance company with weekly calls to make sure they honor what they are supposed to pay.

I guess also on a mental note, I am happy to report that although just a touch lower than what they were pre-surgery my "brain games" that I play are pretty much telling me that I'm on par to what I was prior. Truth is, the fact I haven't played most of them in over a month and the fact I think to play them later at night when I'm getting tired, is probably the reason for the lower scores. I'll give them a few more weeks and then let you know if there was any "permanent" damage to my brain from surgery.

Physically - Things are moving ahead on the physical front. I feel good. I am slowly gaining my strength back, especially in my arms. Truth is, I'm not sure I lost as much in my arms as I feared I had. I'm not going to be lifting any weights any time soon (or even laundry baskets for that matter) but I can do up to five without causing any strain or feeling like I'm too weak to.

It's really my leg strength that has taken the biggest toll. My legs feel like jelly a lot when doing even the simplest task. I can walk at about 90% my old speed. (Some of you know that I tend to be a speed demon when I walk and I've gained a lot of that back already.) I still have to concentrate when I'm getting up and down from sitting because my legs just don't have what they once did. But this is all good because it's forcing me to slow down until I get used to being more careful about not banging my head on everything that is near by. (Yes, I have always had a bad habit of banging my head on everything.... car door, desks, etc. I need to slow down and break that habit and fast!!!)

Beyond that, I still have a bit of facial swelling but even that is looking better each day. I'm struggling a bit with my... I guess hay fever but it's being just minor for now. Nothing a little of my inhaler can't keep at bay. I have finally gotten my body re-regulated to eating normally so I'm not starving all the time. This is a good thing because I was really getting sick of constantly fighting to not eat everything in the house. Another plus of less steroids I guess. I'm sure the loss in muscle counter-acted the starving giant but I have luckily not become a total blimp and put on tons of weight from this episode like I hear so many tend to on steroids. YEAH... Now when I start to try to regain some form of basic exercise maybe it will be a positive. :)

Family - I've actually been feeling good enough that I've taken back on most of the basic chores around the house. Dishes are pretty easy to do when you can do them throughout the day and I have been able to fold the clothes and the like so basic house maintenance has resumed to normal taking some of the stress off the boys.

John is back into routine now with a full weeks work and I think that has helped him feel like things are a little more set again. I have some things for him to do this weekend but that's just the typical honey-dos right? Emotionally and mentally he's holding up very well. He worries about me sometimes, especially when he comes home and sees that I've done some things that I probably shouldn't of but he also sees that on those days I sleep much better at night so I think he understands sometimes I need to push myself. I think it's the spacey moments that scares him the most. Sometimes I will say I am going to go to bed and an hour later I'm still sitting in the chair thinking about it. He's learning to cope with it though.

My son and I had a much better week this week and he was able to keep from pushing me into sensory overload. He tends to get caught up in TV and games and it totally overloads me. I can't imagine what it does to him. We established a nice little routine and set boundaries on these activities and we've been at each other's throats much less thanks to it. It's nice being able to think clearly enough to come to this conclusion.

Speaking of son... he had his 4H Foods show on Thursday. It was a long day for mommy but he was selected as an alternate for the State Fair for his Peanut Butter Fudge. This is a very big achievement. There's a good chance he won't actually go to the fair but it's an honor and a nice pink ribbon for his achievement.

Play - Can't really say there was a lot of play recently. We did visit dance and I had a good time talking to all my friends. I wasn't having my best day so we didn't stay long but it was fun all the same and now I have a little project to work on when I get the oomph to work on it.

I can't say there's much more to report. We are all doing well and I hope all of you are as well.

Huggles to all

Sunday, July 6, 2008

It's Been a Good Weekend

For the most part, I would say that my family has had a very enjoyable weekend despite me having what I would call the worst day I've had post-0p. I'll just give a brief summary then I'm going back to bed. I'm just up with my morning meds and thought I'd go ahead and do some musing while I'm sitting here waiting for my morning snack to settle with my meds. (I have to eat with my meds or the steroid and the horse pill I take for my joints make me miserable all day. And, of course, after eating something I usually am awake for a bit and unable to go back to sleep. Soon enough I'll be off of a "strict" schedule and can be a bit more flexible as I was before.)

Anyway, that ended up being a long and confusing introduction. With the holiday, John is enjoying a three day weekend home with us. (Not like he's been working much of late so I'm sure it isn't quite the jolt he was looking for.) I guess best is to just start with the 4th. We really didn't do anything spectacular. We did go to dinner at my Grandma's house for a short time and that was a nice break in the day. She cooked a very nice meal and we had an enjoyable time. We came home and watched a movie (Finding NeverLand) that had been sitting here on our NetFlix for WAY too long. Then, around dusk, we loaded into the car to see if we could find any good firework displays... we didn't. I think the changes in the laws over the past few years have pretty much put most of the really good local shows out. It's sad too because our town had one of the best shows I had ever seen and that included the multi-million dollar ones put on in the "Big Cities". We did see a few stray type shows so the drive wasn't a complete waste of time. Besides the night air, with the windows down, cruising the country wasn't all that bad anyway. We got home and did some "finger foods" and the boys enjoyed some watermelon on the porch with the cats. I think I finally passed out around 11 and I slept great so I'd call it a success.

Saturday we spent most of the day home. I have been working on organizing some paperwork and the like and I recruited the boys to do some cleaning. I also tried a recipe for some Italian Beef Sandwiches on some leftover roast we had earlier in the week. It turned out great and was a big hit. I will say yesterday was the roughest day I've had since surgery. We had another reduction in my steroid and I think my body was protesting it just a little. I woke up with some swelling in my face but it wasn't anything I was to overly worried about. By the end of the day, I was pretty miserable and my hands and feet were retaining a bit of water too. It wasn't causing me any serious problems, just very uncomfortable. We're watching it closely and the swelling has more than halved today so I think I'm out of the woods and my body was just reacting to the reduction in steroids.

Outside of medical yesterday, we had a visit from my Mother-n-law and that was a nice little chat. We also made our visit to Square Dancing. I don't think I was the company that I normally am and I apologize to all my friends there but I really was a bit uncomfortable last night. :( However, it was good to see everyone and I've got some "projects" to work on now for a big Square Dance convention so it was all good. Now I just need to see what all I have to do since I still haven't seen them. LOL

Well, I can't really think of much more to say. As I said earlier, I woke up this morning and the swelling is down significantly so I think I'm out of the woods. We don't really have any plans today. I will probably recruit the boys to finish the "cleaning" and we have to go to town to get one of my prescriptions refilled and groceries bought but otherwise it will probably be a quiet day at home just relaxing. Which is ok with me surprisingly.

We do have a 4H show later this week we'll have to attend but I don't believe there is anything else pressing at all so we will probably do things around the house this week as I feel up to it. I've got some weeds with my son's name on them!!!

Hope everyone in the States has had an enjoyable holiday weekend!!!

Thursday, July 3, 2008

I Finally Wore Myself Out

... and it was just what I needed!!!

I had a fabulous day yesterday. I got a fair amount of stuff accomplished including making a nice meal for my family. It felt really good. I also accomplished several meaningless... errr productive tasks that made me feel like I'm actually living again instead of just existing. That means a lot to me and I'm really looking forward to seeing things start fitting back into place.

I will admit that I think I both mentally and physically exhausted myself yesterday but I knew when 8:30 rolled around and I was tired, that it was just what my body had ordered. (For those that maybe don't know... pre-surgery I usually went to bed between 8 and 9 PM every night. I'm just one of those people that need that 8-10 hours of good quality sleep to be in prime working order and I've done it my entire life.) Anyway, I slept about 9 hours solid and it really was the best sleep I've had since surgery. I was just out and I've awaken this morning feeling truly rejuvenated.

It's still very early in the day but my mind in clearer this morning than it has been in weeks. I like being able to sit here at my laptop and words just flow to my fingers. I have struggled with this fog enough the past few that it just feels good to be feeling normal.

I think I will have to take it relatively easy today because I don't want to go reverse by overdoing it too often in a row but if this is any indication, I have a feeling things are starting to look even more up in the days to come.

Well, just a short and sweet blog post. Who knows, maybe today will be another good day and I'll get some more of my surgery blogs written.

*huggles and God bless*

Wednesday, July 2, 2008

The Week In Review 6-28-2008...

I really am here and everything has been going well but I have to apologize profusely for the lack of updates. Truth is, I've been working on this very entry since Friday and my muse just keeps taking a hike on me. It's really no wonder I guess since I am in one heck of a drug-induced fog. (Bet most of you never thought you'd see me type those words.) Anyway, I have vowed that I will write this entry today if it's the last thing I do. Again, I apologize for lack of updates and one of my goals in getting back to normal is to start updating again regularly and see if I can get my mind on the other side of this foggy window. LOL

Medically - Well, really there hasn't been any news on the medical front and that's probably mostly my own fault because I've fallen behind a little on my "pushing" to get answers. (I'm blaming it on the fog.) There have been some minor changes in appointments and the like but I may decide to save that for another entry. Basically the next "official" step will be another trip to Chicago on July 28th (this date has changed I will update it when I get focused). On this appointment I will have my first post surgery MRI and I expect to get a bunch of questions answered that have been building up. Among these questions will be details on what was found, what was left, why things were left, what to expect now, what's our next steps, I want to see this thing, let's seek second opinions, I want my records, etc. Believe me, I plan on being out of the fog enough by then to be my typical "won't this girl just shut up now" self. :) You can bet that when I have answers, so will you.

Beyond that appointment, there are no other "official" appointments made yet although I know there will be other follow-up MRIs, etc. Only other doctors I'm seeing routinely is my therapist and my chiropractor. We're not doing treatments with my chiro while I'm on the meds and healing but he is always full of good advice and has given me a few pushes in the right direction already about listening to my body. My therapist and I are talking weekly and it's to make sure that I don't slip without anyone else noticing. He knows me very well and pick up on things that John and I may not. So far he is quite pleased and thinks I am doing just as he expected me to. It's a mental game you know and you all know I love mental games... even if I have to play them in the fog of drugs.

Emotionally - Although my world has been rocked in a big way, I am holding up very well emotionally. I have my "out of character" moments where both of the boys look at me like I've grown a second head but really they haven't been anything to unexpected. It's an adjustment going from someone who is mostly strong to someone pretty dependent but I'm not letting that get to me too much. There's been changes physically and even a little psychologically but they haven't had the toll that I expected them to have. They've been more of a nuisance than anything. Truth is, we've been very good about trying to spread some activities out and my son and I are trying to establish a routine and all of that is helping keep this girl in the right path.

Mentally - As I've said a few times already... mentally I am in a fog right now. It's not a bad fog and the truth is I expected this. I have still got very high doses of medication running through me so it's really not unexpected. I am struggling now and then to get motivated to do things that are even simple like get out of the car in less than 10 minutes. I just get my mind set to do it and decide I'm enjoying the car too much. LOL If it keeps up after the drugs are gone, then I'll worry but for now I'm learning what it is like to be my boys dealing with their ADD. It's not all that bad but I do have a new understanding for the way they think... errr don't think. Simple tasks take a bit more concentration but so be it. It's temporary.

Physically - Wow, this one is a can of worms. I feel great considering what I've been through. I have very little to no head pain still unless I do something stupid. (Don't ask it's a long story caused by my own stupidity because I knew it would cause me a problem.) Really, if I am having any pain at all from the surgery itself I think it's from the anesthesia and the like more than the type of surgery. Imagine that.

The surface swelling in my head went away almost entirely yesterday. I no longer have this nice little Klingon head developing. Other than the short hair on my right side and a nice little scab on my forehead, you'd never know I just had brain surgery. About 90% of the scabs where the incision is has healed completely and fallen off at this point. As I said, it's where they tied it all off at my forehead that is the only "vivid" scabbing right now and it looks like I did a nice little head bang on my car door or something.

The bruising on my face is almost gone as well and the bloodshot in the eye is almost invisible now. I'm guessing a few more days and John will no longer be able to take credit for beating the tar out of me. :)

Ok, that covers my head, my bruising... what else... oh, I am still pretty week but have set out this week to gain that back. I am working on my stamina a bit and trying to start rebuilding the muscle tone I've lost. When I had to stop in the middle of the steps at my therapist's office yesterday I knew it was time to start working that way again. My greatest physical pain is the toll the steroids are taking on my cartridge. I am combatting that as much as possible with Glucosomine and just working them but that will be a work in progress as long as I am on them and I know that. We still have a few more weeks... well less than two but still.

I guess still on the physical meter, as long as I'm not doing too much bending and the like I've starting taking care of the house again. It makes me have a sense of normal back so I'm not minding too much. I am pushing myself to do things for myself when I can. There are things I've found I can't do (nor do I try) and I am still not lifting anything near five pounds although I have picked up the milk jug a few times as long as it's not full. I hate feeling helpless so every little bit helps. I've found I sleep less but I rest a lot still. There really is a big difference in sleeping and just staring at a ceiling fan for an hour... believe it or not the fan is more restful.

Family - John has returned to work and has been doing ok with. I think he is happy to be back to at least semi-normal even if he does have to work a bit harder at home right now because of what I am unable to do. He has been away for quite some time since we were on vacation before surgery and then he had "vacation" when he returned. Things are slowly getting back to a routine.

I can't really speak for him but he is doing his best with what he has. John and I work in such a way that we both cater to our strengths for the most part and don't have to "deal" with our major weaknesses on a normal basis. This works for us and it's seamless so we've never had a reason to venture outside of our comfort zone with certain things. He's had to do that a lot recently and I think he's done a pretty good job even if I have had to slap him around a few times to make him think outside the box a bit. It's good for him.

Our son is doing well too. He's had a few spells of "summer crazy" already but he's had some major changes this summer so it's not too surprising. I'll also admit that the summer has been a bit boring so far but as things start getting into routine a bit I think he will start enjoying it a bit more. He has made a lot of sacrifices this summer and had to miss out on some things he probably would have enjoyed but we plan on making up for that as I get a bit stronger. I think I finally got it through to him that there is more to do in the house than play random games and watch cartoons all day. We'll see how long this revelation lasts. LOL

Play - I'm not sure how much play we've actually done but have have enjoyed a few nights out doing "unusual" things for us including visiting a small restaurant we'd never visited before. You all know I hate to spend money but we've allowed ourselves a few splurges recently. Hey you only live once and since we can't dance right now, we can use a bit of that for other stuff.

For those that are interested, we will be dropping by dance again Saturday night for a short time. A good friend has recruited me for a little project and it is just the excuse I need to get John to take me and lift my spirits again with all my lovely friends. I hope to see a bunch of you there!!!

Other plans - We do have a 4H show this week so we'll see how things go with that. I really need to get him motivated to play with his project a bit this week instead of just talking about it. Unfortunately, with ADD you have to push them a lot more and my own push isn't there right now so we are struggling!!!!

Ok, I think that sums it up. I do plan on trying to work on my surgery series of back posts but I'm not making any promises at this point. I figure as long as I get it all finished before I have to return to work... well, I'll be pleased.

Love ya all. Huggles