I shared a LOT of personal information on my last posting. A lot of it negative and scary for me. I feel obligated to now share an update.
I started to get pretty stir crazy today. No physical therapy, no occupational therapy, less people here.., Luckily my kick ass family started showing up. That started to help a little. Then I had something happen that has stopped from nerve issues. That really helped. Then, more family showed up. We ended up out in a courtyard playing a mix of, baseball, basketball, run around andbe wild and you can't hit me. It was rowdy as sin, loud as heck and it could not have been any better.
The family had to go though. Ugh I thought. I came back to my room. The number #1 concern that I have had worked for once. I was so happy that I was crying so hard that my back hurt. It is part of my ticket home. I immediately texted many people, I called on the nurse. She gave me a hug. I am so happy!!! To top it off, I had forgotten what I had ordered for dinner. Who cares though, it is 2 hours old anyway. I opened it up and it was a pulled pork sandwich, slaw, fries, and 2 cookies. I hit the jackpot today.
I can honestly say today was the biggest turn around for me. I will be frustrated at some things in the future but maybe, just maybe this was some weird plan to prepare me for things to come.
Thanks to everyone for sticking with me on this wicked scary journey.
Work hard, play harder, love hard. I said that earlier and it worked. Don't be surprised to see that tag line for a while out of me.
Love to all.
Sunday, April 30, 2017
Sunday April 30
This is where I show how personal this can be.
I honestly don't remember how much private info on here. Not name, birthday and social number but, how private, personal, embarrassing this is. I hope to come back to re read all of this from the comfort of of my house, on a laptop with a nice cup of coffee and laugh, cry and be grateful. I know it will happen. I just don't know when. Me being me, I know it will come soon.
I do remember the neurosurgeon said, if things went perfect, I might walk out of the hospital in 3 days. I am angry those words were ever said. That was a week ago and my goals are not even close to that yet. Did things not go perfect? It was a surgery done with microscopes around nerves. How could it go perfect?
In lesser to major order of concerns. (I think I want to type this for people that see me in the future are not shocked when they do see me).
Numbness on the bottom of my right foot. Nearly a non issue. Just uncomfortable.
Major? Paralysis on my left leg below my knee along with weak hips. I can not wiggle any of my left toes, pump my left foot or basically control my left leg. I am in a brace that helps it kind of stay under control along with a lot of physical therapy.
The worst concern is complete numbness in my waist area. Have you ever sat on the toilet for 4 hours? Me neither. :-). But if you had, everything goes numb. Everything. I have no feeling or sensation in the "Southern region". That also makes it so that you can not empty yourself out. I have been on plenty of meds and other (cruel) methods to get relief.
I am thrilled to report I did have a major breakthrough today.
Now for the next round of meds to kick in for another breakthrough.
The image below is from one of the best friends in the world. I, texted him and family with the details of the event. I had to share the breakthrough.
Thanks again to all of my friends and family.
Like I said before, it is going to be a longer haul than I planned. I will get there. I didn't think of the psychological toll it would take. For example when my darling babies look at me and have so many questions in their eyes.
That is enough for now. Back to some exercises before I get hauled out for more tests, vitals, meds.,,,
Thanks to everyone.
Work hard. Play harder. Take NOTHING for granted. Love hard.
Friday, April 28, 2017
April 28. Day 8 post op
Wow. What a ride.
I must remind everyone. This is purely for me. It is an outlet. It might be too personable.
With that disclaimer out of the way, my second note is about my support. Good god am I lucky to have them. This is the personal part that I talked about. I am thanking Lori and David in particular but everyone at the same time. Thank you all I am blessed.
I moved to rehab yesterday. That is a good thing. They focus more on day to day, how to do little things like put on socks. I also work on physical therapy.
I still have the same concern, nerve loss of lower extremities that do basic functions.
Again, the toughest part of this has been mental. 8 days ago, I was coaching tball. God what I would do to do that again. I will get there. Just not as quickly as I thought I would.
Lastly a shout out to my kick ass co workers that have me covered. CM team rocks. I can't wait to get back into BelManage!
Wrapping this up now. I have PT coming soon. That always makes me feel better.
Thanks again to all. Every little piece help right now. Every!
I must remind everyone. This is purely for me. It is an outlet. It might be too personable.
With that disclaimer out of the way, my second note is about my support. Good god am I lucky to have them. This is the personal part that I talked about. I am thanking Lori and David in particular but everyone at the same time. Thank you all I am blessed.
I moved to rehab yesterday. That is a good thing. They focus more on day to day, how to do little things like put on socks. I also work on physical therapy.
I still have the same concern, nerve loss of lower extremities that do basic functions.
Again, the toughest part of this has been mental. 8 days ago, I was coaching tball. God what I would do to do that again. I will get there. Just not as quickly as I thought I would.
Lastly a shout out to my kick ass co workers that have me covered. CM team rocks. I can't wait to get back into BelManage!
Wrapping this up now. I have PT coming soon. That always makes me feel better.
Thanks again to all. Every little piece help right now. Every!
Thursday, April 27, 2017
One week post opp
Good morning. A week. Good grief. That sounds so long.
This has definitely been a series of ups and downs.
I believe I have said this before, but I will power though this.
When the DR was going through his list of what could go wrong, I figured out that my mind had made two columns. Probable and not probable.
In the not probable column are the extreme things. Like death. Yes, there was a micro chance that something crazy happened and I died. I had also put any type of paralysis lasting longer than 3-5 days in the non probable list.
To be honest, my left leg is not behaving at all like I had expected. On days 1-3 is was a burning pain that I had never felt before. That pain is all gone now. I guess pain is good though as that means feeling right? Not really.
Another hurdle that I have in here is pure mental. What I mean by that is 8 days ago, I had a dream life in every sense of the meaning. Now, I have to have visitors. I need to hit a button to get assistance to go to the bathroom.... I don't mean that in an absolute negative way, just a wild switch in my life.
Another mental issues is sleep or rather lack of sleep. I have neighbors on both sides of my room and suffice it to say, I am much better off than they are. The nurses gave me ear plugs last night and timed their visits with me so I got as much rest as possible. What a diff a few solid hours of sleep makes!
I have big learning curve coming up for me. It will be a moving target as I get more and more feeling back.
My targets are: get out of this room in the neuro ward. Target date is tomorrow. From here, I would do to rebound rehab. That is still on the hospital property but technically, it would be discharged from the hospital.
The timeline at rebound is pretty big. Anywhere from 1-3 weeks there.
While in recovery, there will be 3 hrs per day of physically and occupational therapy. Another bonus of being in rehab is they don't check on you as much so you have a little more private time. I might have a room mate also. That might be fun. NOT.
I believe there will be a lot of evaluation while in rehab. How I am doing? What needs work? How is our house set up? Can I practice anything here that might be a challenge at home? What brace(s) will work for me. It sounds like a lot of measuring and fitting g for those. So much that they are normally ready just time to go home.
On a side note, I think a therapy or guide dog should be given to me!!!!! Back to reality now.
I know this was a choppy update. I had some charger issues and several nurse visits.
Take care all. Give your loved ones an extra hug today. Then give them a mysterious grin. Make them wonder what your up to.
Love to all.
This has definitely been a series of ups and downs.
I believe I have said this before, but I will power though this.
When the DR was going through his list of what could go wrong, I figured out that my mind had made two columns. Probable and not probable.
In the not probable column are the extreme things. Like death. Yes, there was a micro chance that something crazy happened and I died. I had also put any type of paralysis lasting longer than 3-5 days in the non probable list.
To be honest, my left leg is not behaving at all like I had expected. On days 1-3 is was a burning pain that I had never felt before. That pain is all gone now. I guess pain is good though as that means feeling right? Not really.
Another hurdle that I have in here is pure mental. What I mean by that is 8 days ago, I had a dream life in every sense of the meaning. Now, I have to have visitors. I need to hit a button to get assistance to go to the bathroom.... I don't mean that in an absolute negative way, just a wild switch in my life.
Another mental issues is sleep or rather lack of sleep. I have neighbors on both sides of my room and suffice it to say, I am much better off than they are. The nurses gave me ear plugs last night and timed their visits with me so I got as much rest as possible. What a diff a few solid hours of sleep makes!
I have big learning curve coming up for me. It will be a moving target as I get more and more feeling back.
My targets are: get out of this room in the neuro ward. Target date is tomorrow. From here, I would do to rebound rehab. That is still on the hospital property but technically, it would be discharged from the hospital.
The timeline at rebound is pretty big. Anywhere from 1-3 weeks there.
While in recovery, there will be 3 hrs per day of physically and occupational therapy. Another bonus of being in rehab is they don't check on you as much so you have a little more private time. I might have a room mate also. That might be fun. NOT.
I believe there will be a lot of evaluation while in rehab. How I am doing? What needs work? How is our house set up? Can I practice anything here that might be a challenge at home? What brace(s) will work for me. It sounds like a lot of measuring and fitting g for those. So much that they are normally ready just time to go home.
On a side note, I think a therapy or guide dog should be given to me!!!!! Back to reality now.
I know this was a choppy update. I had some charger issues and several nurse visits.
Take care all. Give your loved ones an extra hug today. Then give them a mysterious grin. Make them wonder what your up to.
Love to all.
Tuesday, April 25, 2017
Day 5 post op. April 25th
Day 5 already.
I was awake again at 330 but I might have found out why I am awake at that time each day. My neighbor is in much more pain than I am and is vocal about it. Luckily it was med time for me so I went back to sleep.
I am starting to get frustrated. Without going into details, some normal things are not happening like they should or are much harder than I anticipated.
Each day I have noticed that I have a new theme, or at least a modified theme. Today is "nut up big boy if you want to get out of here". I really want to move on to rehab, so I need to put asides the pain, frustration, relearning basics and be thankful.
Today's physical goals are: get up and into a chair for each meal, take a full shower, hopefully get some types of braces for my left side once I can get some control on my left side, I hope that I can just power through the pain everywhere else. My issue is my left side (leg and foot) either don't work or I think they are doing one thing and they are doing something else.
I need to run for now. Hopefully I will break through some mental and physical barriers today and be that much closer to getting out of here.
Love to all. Sorry if this was a tough read. My phone is not playing nicely on blogger this morning and is making proofing a pain.
I was awake again at 330 but I might have found out why I am awake at that time each day. My neighbor is in much more pain than I am and is vocal about it. Luckily it was med time for me so I went back to sleep.
I am starting to get frustrated. Without going into details, some normal things are not happening like they should or are much harder than I anticipated.
Each day I have noticed that I have a new theme, or at least a modified theme. Today is "nut up big boy if you want to get out of here". I really want to move on to rehab, so I need to put asides the pain, frustration, relearning basics and be thankful.
Today's physical goals are: get up and into a chair for each meal, take a full shower, hopefully get some types of braces for my left side once I can get some control on my left side, I hope that I can just power through the pain everywhere else. My issue is my left side (leg and foot) either don't work or I think they are doing one thing and they are doing something else.
I need to run for now. Hopefully I will break through some mental and physical barriers today and be that much closer to getting out of here.
Love to all. Sorry if this was a tough read. My phone is not playing nicely on blogger this morning and is making proofing a pain.
Monday, April 24, 2017
April 24 morning
Good morning!
It is a tick past 4 am and all is good. All vitals checked, bed tipped into upright position, meds taken and ready to tackle the day.
Most importantly is that I brushed my teethe and followed that up with some mouthwash! Hopefully visitors will sit closer now. :-). Speaking of visitors, I can have them. I am NOT asking for any long distance visitors or for anyone that would sit in traffic. If you are in Vancouver and want to swing by to give me a hard time, then please do. No sappy or sad crap allowed.
Back to the update. Since it is o dark thirty, I don't have a lot to say other than I slept well from midnight until 3:30. Now I am Sypathetic to people who have insomnia. That would get old in a hurry.
My mobility is increasing. I can get both legs off of the mattress a few inches.
I can easily wiggle my right toes. There is a move that I call the gas pedal move. Simply push your foot down like you are flooring your gas pedal (not that I would ever do that in real life. Lol). After you push down, you lift in the opposite direction. To have a normal walk I need 10 degrees. Saturday, I was lucky to get to zero degrees. Yesterday I was around 5 degrees. I don't have a number yet this morning but I bet it is more than 5. My left side is not nearly as far along as the right side. It looks like it has a lot of catching up to do.
Nerve damage or pain is very difficult to explain. I won't get into it very much. Just say it can really really suck.
There is numb, tingly, hot and burning hot that is nearly indescribable. No one wants that burning..
My hot spots on the right side are nearly gone.
The hot spots on my left side are definitely moving around and getting smaller.
I think part why I am awake is that I am so excited to see what today is going to bring.
Sit up? Get to my chair with minimal help, use the walker to scoot, shuffle or walk? The world is my playground. I am ready to go play!
Once again, I have to say how fortunate I am. Between family, friends, God and everyone at the hospital, I am going to kick ass and be out of here soon.
I have rambled on long enough for this morning.
Go hug a loved one. Buy a cup of coffee for the person behind you in the coffee shop. Smile at someone that looks like they could use a smile. Unless it is a pretty girl with an angry looking big boyfriend. Don't smile at her that might not be a good idea. Do something else nice to someone without an angry looking boyfriend. You get the idea. And lastly, do something for yourself. You need to take care of yourself also.
Have a great day! I will.
It is a tick past 4 am and all is good. All vitals checked, bed tipped into upright position, meds taken and ready to tackle the day.
Most importantly is that I brushed my teethe and followed that up with some mouthwash! Hopefully visitors will sit closer now. :-). Speaking of visitors, I can have them. I am NOT asking for any long distance visitors or for anyone that would sit in traffic. If you are in Vancouver and want to swing by to give me a hard time, then please do. No sappy or sad crap allowed.
Back to the update. Since it is o dark thirty, I don't have a lot to say other than I slept well from midnight until 3:30. Now I am Sypathetic to people who have insomnia. That would get old in a hurry.
My mobility is increasing. I can get both legs off of the mattress a few inches.
I can easily wiggle my right toes. There is a move that I call the gas pedal move. Simply push your foot down like you are flooring your gas pedal (not that I would ever do that in real life. Lol). After you push down, you lift in the opposite direction. To have a normal walk I need 10 degrees. Saturday, I was lucky to get to zero degrees. Yesterday I was around 5 degrees. I don't have a number yet this morning but I bet it is more than 5. My left side is not nearly as far along as the right side. It looks like it has a lot of catching up to do.
Nerve damage or pain is very difficult to explain. I won't get into it very much. Just say it can really really suck.
There is numb, tingly, hot and burning hot that is nearly indescribable. No one wants that burning..
My hot spots on the right side are nearly gone.
The hot spots on my left side are definitely moving around and getting smaller.
I think part why I am awake is that I am so excited to see what today is going to bring.
Sit up? Get to my chair with minimal help, use the walker to scoot, shuffle or walk? The world is my playground. I am ready to go play!
Once again, I have to say how fortunate I am. Between family, friends, God and everyone at the hospital, I am going to kick ass and be out of here soon.
I have rambled on long enough for this morning.
Go hug a loved one. Buy a cup of coffee for the person behind you in the coffee shop. Smile at someone that looks like they could use a smile. Unless it is a pretty girl with an angry looking big boyfriend. Don't smile at her that might not be a good idea. Do something else nice to someone without an angry looking boyfriend. You get the idea. And lastly, do something for yourself. You need to take care of yourself also.
Have a great day! I will.
Sunday, April 23, 2017
April 23rd evening update
I had a very tough start to the day today. But keep reading, it turns around.
I had mentioned swelling and pain are worst at day 3-4. That is the truth. Add to that a bad night of sleep and going backwards on mobility and I was pretty cranky.
I had a few wonderful visitors today. That usually helps.
Around 2 ish, my physical therapy lady came in. I knew it was going to hurt but I need the therapy. Her goal was to get me sitting up with my feet dangling off of the bed. I was semi doubtful. She is a great coach and doesn't help out until you really try and get stuck. She was going to call it good when I was upright. Not so fast grasshopper! I wanted to go to the chair and we did it! It was monumental. Things are turning around and goals are being met. I am so happy right now.
Tomorrow's goal is to walk with a walker. I think it just might happen! I won't be making laps yet but a few steps will be huge!
Great to end on a great note.
I had mentioned swelling and pain are worst at day 3-4. That is the truth. Add to that a bad night of sleep and going backwards on mobility and I was pretty cranky.
I had a few wonderful visitors today. That usually helps.
Around 2 ish, my physical therapy lady came in. I knew it was going to hurt but I need the therapy. Her goal was to get me sitting up with my feet dangling off of the bed. I was semi doubtful. She is a great coach and doesn't help out until you really try and get stuck. She was going to call it good when I was upright. Not so fast grasshopper! I wanted to go to the chair and we did it! It was monumental. Things are turning around and goals are being met. I am so happy right now.
Tomorrow's goal is to walk with a walker. I think it just might happen! I won't be making laps yet but a few steps will be huge!
Great to end on a great note.
Post op day 3
All DR's say day 3 is the worst. That is when swelling is at the max.
We are at day 3 now. I am very anxious to see what tomorrow holds.
It is too early to know exactly what is on my agenda for the day. I know the PT lady will be with me once or twice today. She is great and helps a LOT.
I think I have another ultrasound on my legs to check for blood clots. I did that yesterday and it was not as horrible as I feared it was to be.
Take care everyone. Do something special for someone that is not expecting it.
We are at day 3 now. I am very anxious to see what tomorrow holds.
It is too early to know exactly what is on my agenda for the day. I know the PT lady will be with me once or twice today. She is great and helps a LOT.
I think I have another ultrasound on my legs to check for blood clots. I did that yesterday and it was not as horrible as I feared it was to be.
Take care everyone. Do something special for someone that is not expecting it.
Saturday, April 22, 2017
4-22 short update
I know the font on this post is different. I will blame the drugs as to why I can't figure how to get the font, Ariel to stick. So, you are stuck with times new roman I think.
I am in great hands. The DR.s, nurses and family and friends are all great. Even with how much this hurts and is scary, I can't believe how lucky I am. <-- not the drugs talking there.
The physical therapy lady kicks ass. Really hurts but in a good kind of way.
I am no longer in a prone position. I am at 30 degrees. My nurse even took my phone and took a picture of it. I will NOT be posting that on here. You can thank me later for that.
My nurse has a lofty goal of getting my legs off the side of the bed. I am not sure if that is a reality or not.
I do have another MRI scheduled for sometime later that I am dreading but not much that I can do about that.
I tried to set my blog up so that people can subscribe to it. Meaning, you get an email when I post. I think that is how it works at least.
My title said short update. Oops.
Take care all. Hug you loved ones and remember how grateful we all are and how kick ass life is.
I am in great hands. The DR.s, nurses and family and friends are all great. Even with how much this hurts and is scary, I can't believe how lucky I am. <-- not the drugs talking there.
The physical therapy lady kicks ass. Really hurts but in a good kind of way.
I am no longer in a prone position. I am at 30 degrees. My nurse even took my phone and took a picture of it. I will NOT be posting that on here. You can thank me later for that.
My nurse has a lofty goal of getting my legs off the side of the bed. I am not sure if that is a reality or not.
I do have another MRI scheduled for sometime later that I am dreading but not much that I can do about that.
I tried to set my blog up so that people can subscribe to it. Meaning, you get an email when I post. I think that is how it works at least.
My title said short update. Oops.
Take care all. Hug you loved ones and remember how grateful we all are and how kick ass life is.
Friday, April 21, 2017
Post op
Sorry to keep everyone hanging.
The big surgery is over.
I am not gonna like this, this sucks.
The thinks he got all of the tumor. I just had an MRI but the dr wants another one done.
We don't any timelines yet.
We do know I have feelings. It is tough to explain but I have them and that is good.
Day 3 is usually the worst due to swelling. After that it should get better.
I do have more movement in my legs than immediately after surgery.
Take care everyone.
The big surgery is over.
I am not gonna like this, this sucks.
The thinks he got all of the tumor. I just had an MRI but the dr wants another one done.
We don't any timelines yet.
We do know I have feelings. It is tough to explain but I have them and that is good.
Day 3 is usually the worst due to swelling. After that it should get better.
I do have more movement in my legs than immediately after surgery.
Take care everyone.
Tuesday, April 18, 2017
What is a marker?
I have been asked several times what the marker is. Contrary to popular belief, it is not an RFID chip like what they put in dogs at the humane society to return them to their rightful owners. :-) It is also NOT like a wireless fence for dogs. Although both are good ideas, that is not what my marker is. Even though it is in the same spot as in pets.
The marker is something the neurosurgeon uses as a tool to know where the tumor is. I don't know all of the ins and outs of it. He said when they first start cutting, all of the vertebrae look the same. Having the marker in there, gives him a reference point.
Yesterday, I asked the Dr that was inserting the marker what it was made out of. He said it was either stainless steel or gold. He said that he had never been asked that before. I thought that was odd.
I think that as the neurosurgeon finishes up removing the tumor that he will also remove the marker while he is in there.
I had sent out an email yesterday regarding Lori sending out a mass email. I have since learned that for whatever reason, I don't have that group in my phone. I will ask her to send out a very brief email to a very small group of people. This is not to hide anything. She will have her hands full with a cranky husband and a couple of toddlers at home so she will be busy also.
I will post an update on here as soon as I can. Hopefully Friday sometime.
Thanks again for all of the good vibes. I am ready to get this damn thing out of me.
The marker is something the neurosurgeon uses as a tool to know where the tumor is. I don't know all of the ins and outs of it. He said when they first start cutting, all of the vertebrae look the same. Having the marker in there, gives him a reference point.
Yesterday, I asked the Dr that was inserting the marker what it was made out of. He said it was either stainless steel or gold. He said that he had never been asked that before. I thought that was odd.
I think that as the neurosurgeon finishes up removing the tumor that he will also remove the marker while he is in there.
I had sent out an email yesterday regarding Lori sending out a mass email. I have since learned that for whatever reason, I don't have that group in my phone. I will ask her to send out a very brief email to a very small group of people. This is not to hide anything. She will have her hands full with a cranky husband and a couple of toddlers at home so she will be busy also.
I will post an update on here as soon as I can. Hopefully Friday sometime.
Thanks again for all of the good vibes. I am ready to get this damn thing out of me.
Monday, April 17, 2017
Monday, April 10, 2017
10 days and counting
The countdown is on.
T minus 10 days and counting.
We had another successful toddler party this weekend. For those of you that don't know what a toddler party is, think of any excuse at all to have the kids over for a get together. This one was Easter themed. Lori hid approx. 50 eggs in the backyard for the kids. There were about 5 kids that were doing the "hunting". They all did great. I have never before seen kids go get eggs, look around to see if any other kids did not have as many as they did and then put their eggs in the other kids basket so it was all fair for everyone. Once all of the eggs were found, they all came inside and dumped them on the floor. There was no, "that is mine" or, "I didnt' get as much as you". All of the kids that came (and their moms) are just great. We are fortunate that the kids friends are all great kids.
T minus 10 days and counting.
We had another successful toddler party this weekend. For those of you that don't know what a toddler party is, think of any excuse at all to have the kids over for a get together. This one was Easter themed. Lori hid approx. 50 eggs in the backyard for the kids. There were about 5 kids that were doing the "hunting". They all did great. I have never before seen kids go get eggs, look around to see if any other kids did not have as many as they did and then put their eggs in the other kids basket so it was all fair for everyone. Once all of the eggs were found, they all came inside and dumped them on the floor. There was no, "that is mine" or, "I didnt' get as much as you". All of the kids that came (and their moms) are just great. We are fortunate that the kids friends are all great kids.
Other than the toddler party, I am still waiting for my HAM radio license from the FCC to be published so that I can transmit on the air. I still don't really know what I will be transmitting but hey, it is going to be cool!
I still have a goal/dream to hear the International Space Station (ISS) transmit. Considering the ISS travels at approx. 7 KM per second or, 17,500 miles per hour, that is pretty incredible. With that speed, they are only overhead for approx. a 10 minute window that you can hear them.
That's all for now.
Take care.
Tuesday, April 4, 2017
Tick tock tick tock
I am attempting to be patient and wait for the time to pass. Hurry up and get here big day!
Thanks Jeremy and family! I think you hit is spot on!
Luckily, the weather just might be making a turn towards Spring! T-Ball is upon us and we are getting outside more and more. Well, we are always outside but now, we don't need rain coats, boots and umbrellas! Rie has had Tball twice a week now so that keeps me pre occupied. I also passed my technician license for amateur radio. I hope to have my call sign and be able to transmit next week.
Yesterday I got our mail. With technology, we hardly ever get real mail. Normally just advertisements and bills. Imagine my surprise when I got a card addressed to me. It is not my birthday. What the heck is this? I look at the return address and it is from my buddy in Colorado. What the heck is he sending me? Probably the funniest card I have ever received.
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