Adding a beta blocker

Well folks once again it has been way to long between posts and this time it was a ridiculously long time. Overall thing have been going quite well. Lately my feet and hands have been bothering me, especially at night. For example we ended up helping at the thanksgiving eve service last month. Well actually we helped between services with the coffee, hot chocolate and cookie tables. It was a rather fast moving job and only lasted about 45 minutes but I was beat. My knees were killin’ me along with my feet and hands. But it was good to help where there was a need and the kids were right there working with us. A good time was had by all.

Now for more of a health update… I went and saw the cardiovascular surgeon the Tuesday before Thanksgiving. I took a disk with my latest CT on it so he could compare it to the one from 2009. Then while I was there they did an echocardiogram to compare to the one they did 6 months ago. The good news is all is well and there is no change to the size of my aorta! The not so great new is I get to start a beta blocked, metoprolol er succinct 25mg, to be exact. My heart rate and blood pressure are not high, but they are the higher end of “normal”. So as a precaution the doc thinks we could do this. With the issue I have he thinks that anything to keep my heart rate down and my blood pressure lower would be best. So we are going to give this a shot. Anything to help keep them from having to go in and play with my heart is worth a shot to me!!

Photos and an update

It has been a while since I posted anything out here and I think I have a few things I could post but I haven’t taken the time to type any of it up (wow, Captain Obvious).   However, yesterday I had the chance to take photos of some very nice cars that were on the grounds of our church and wanted to share them.  I have posted about 40 pictures out on Facebook and just wanted to share them with any of you that don’t follow my Facebook life.  And if I can remember my Flicker log-in I think I might post them out there as well.

While I’m here I might as well give a quick health update.  I am doing well overall.  My feet are getting even better.  It’s just my toes that are feeling “off”.  I still tire quickly, but I don’t think that is going to change any time soon.  However, I am happy that I was able to spend an hour outside in the AZ heat taking pictures of very nice cars.  I must say though that my legs are sore and it just reminds me that I need to be exercising more.  Heck, I need to be exercising!  I am still taking my Tramadol three times a day and Lunesta is helping me sleep each night.  I am getting headaches pretty much daily and I’m not sure of the cause.  I don’t know if it is residuals from the car accident in the beginning of April or not, but they are not fun and I am ready for them to stop any day now.

Well, it is getting late and my head it starting to hurt a bit more so I am going to call this quits for now.  Hope you enjoy the pictures…

Donovan

A Guillain-Barré Survivors Interview

Below is what I like to call A Guillain-Barré Survivors Interview.  This started one evening in the GBS Survivors! Facebook Group as a simple thought.  The goal of this “interview” is to help Survivors share their story.  There are some out there that want to share their story but they don’t know how.  There are some out there that have shared but they’re all over “the net”.  The goal here is to bring the stories together.

If you are a Survivor please fill out the interview to the best of your ability.  If you are unable to answer any questions that’s fine, answer only the questions you feel comfortable, or are capable of, answering.   Please be as long, or as brief, as you would like with your answers.  It not about how much you provide it’s about the story and sharing it with others so they can learn what GBS is all about.

As I begin to receive completed interviews I will combine them into a single document and once I get a large enough collection I will create an “eBook” in the form of a PDF and share it with everyone I can.   I will create additional volumes as I continue to receive interviews.

Please share this with any GBS Survivor you know.  When you are done please send it to me as a message via Facebook (https://www.facebook.com/thesachsman) or email me at GBSInterview@gmail.com.

Feel free to add pictures if you’d like.  I will do my best to include them.

A Guillain-Barré Survivors Interview

Name:

Date your symptoms started:

Date officially diagnosed:

What were your symptoms?

Explain what it took to get properly diagnosed:

What event led to your contracting GBS? (Flu shot, illness, surgery, etc.)

How were you treated once diagnosed?

How bad did your condition deteriorate?  Were you paralyzed and if so to what extent?

How long were you hospitalized?

What has been the impact on your employment?

How has GBS affected you financially?  Did you have insurance?

When you were you discharged from the hospital what was your condition, your mobility, and were you in need of any assistive devices?

What kind of therapy did you receive?

How knowledgeable about GBS where the medical professionals that you came into contact with?

What is your current medical status? How much have you recovered?  What is the prognosis for your further recovery?

How has your daily routine changed since being diagnosed with GBS?

What medications do you continue to take and what are they for?

Are you receiving disability of any kind?  How difficult was the process?

Throughout your journey with GBS how have you been affected emotionally?  Have you been treated for depression or anxiety as a result of your illness or recovery?

What affects has GBS had on your family and friends?

How have those in you community helped you in your time of need? (neighbors, church family, etc)

Does GBS or any other autoimmune illness tend to run in your family?

What other disorders, syndromes or disabilities do you have?

If you could share anything about your journey with GBS what would it be?

Do you have a place where you share your story? (Blog, website, Facebook page, etc.)

Happy Birthday to Me

Hello all, figured today was as good a day than any to write a post.  First of all thank you to everyone that has sent me well wishes on my birthday.  I spent some extra time in the car today and as usual spent the time thinking.  Since I knew how I was going to solve my clients issues I didn’t need to think about that so I spend some time pondering other things, let’s see what all I can remember.

Most of my thoughts as you may have guessed were focused on birthdays and getting older.  Why is it that as we get older we don’t have parties like the ones we had when we were kids?  You know the ones where you played “Pin the Tail on the Donkey” and games with balloons and anything else you could come up with.  I guess there are some folks that still do this, but from what I can tell it isn’t the norm.  As we get older and don’t have these cool parties anymore we also don’t get all the cool gifts either.  Back in the day it would be the numerous decks of UNO cards, action figures, matchbox cars and all those other great toys we used to get.  Today it would be airsoft guns, video games and gift cards.  Just ‘cause  I’m 37 doesn’t mean I couldn’t use gift cards ranging from$5 to $50.  In fact I think I need them more now than I did when I was 12.  At this age I have to spend money on my mortgage, utilities, food, gas for two cars and lord knows what else, so yes a few gift cards could really come in handy to get those things I would really “like” to spend my money on.  Please don’t get me wrong, it is great to see all those out there that call me their friend and publically wish me a Happy Birthday on Facebook, but it seems each year the actual cards with checks and cash (remember the $1 per year) dramatically reduce and before you know it they stop all together.  What’s that all about?

I really don’t expect any of this to change, why should it? But these are the gee-whiz things I was thinking about as I drove across town today.  Other than these random thoughts on life my day was not all that eventful.  I went to see a client and helped solve a few of their problems and they bought me lunch (gotta love it when that happens).  Then it was back to the office where I finished out my day.  Then I headed home and we went out to eat a birthday dinner.  It was a really good meal and we had a good time. Then it was back home to watch the new episode of House, followed by Oreo ice cream cake. 

I had a couple hours where I didn’t feel “right” (as I do many days), ‘cause I forgot to take my meds on time, ‘cause I was working on stuff and lost track of time.  That happens more often than I would like, but even if I set a reminder there are still times I forget to take the darn pills, ‘cause I just turn it off and say I’ll take them as soon as I’m done working on the “thing” I’m currently working on.

Well, that kind of leads us into my GBS recovery.  Things are still going well.  My feet still bother me from time to time (and this is one of those times).  My toes tingle and there is a stabbing pain every now and then, rather annoying If I may say so myself.  This is the main pain issue I have.  I don’t feel all that great in the mornings and most mornings are started by me waking up 45 minutes, to an hour, before I have to get up so I can take my Tramadol.  This allows time for the meds to kick in and I can get up and feel much better than if I just woke up and tried to get going without them.  Other than that I still tier rather quickly, but again that is something I figure I am going to have to live with.

I am very pleased with my recovery.  I have met (virtually) people that have it much worse than I do.  I wish I could make it better for others, but we are all different and our bodies all work in different ways.   This thing they call GBS is an odd and evil creature.  The “professionals” seem to know next to nothing about it and they don’t seem to believe those of us that have it when we try to explain what we feel and what we can and can’t do.  It’s a real bummer!  There are times that I feel guilty for the amount I have recovered and to know that I had insurance when I got sick so my cost was not all that much.  There are so many people that have been recovering as long as me, or longer, and they still can’t feel their legs, or move their arms or even walk.  There are so many out there that GBS has ruined their lives financially, which leads to a ruined life all around.  Why did I get so “lucky”.

Well, I didn’t mean for this to turn into such a chipper post, but it just kind of flowed that way.  I hate when I have time to think without problems to solve…

Quick Two Year Update

Well I really wanted to have this done several days (weeks by the time I actually finished this) ago but that just didn’t happen. December 26th was my two year anniversary with my start with GBS. If you have ready anything else on my blog you will know what kind of life I have had since the onset on GBS. The weather in Arizona this time of year is no fun for me. It has been cold (by AZ standards) and wet (at times), and that makes for real painful knees and well overall legs and hands.  Thankfully the last week or so has warmed up a bit, but I can still feel it in the joints.  Overall things are not bad and I am thankful for the amount I have recovered in two years. I read many stories where people are still unable to walk years after their GBS onset. At this time two years ago I was still learning to walk again and was doing so a few weeks into recovery. The weight of my own body was still too much for my legs to handle in the beginning. Not to mention that the signals my brain was putting out were still unable to make it through my entire body because the nerves were still healing and at six foot plus that healing process took a while. The process was both frustrating and painful. When GBS strikes, your brain still works, the mind is still moving a million miles a second at times and you can do nothing but lay there. So frustrating!

Again I am so thankful for the amount I have recovered. I am up and moving like a “normal” person, whatever that is. But this can be a frustrating thing as well. See I look like I have no issues but my body is limited. I tire easily and I do have limitations, but these are not all visible to the average person. For example I was working with the one to three year olds at our church on Sunday mornings and I love doing so. However, I would go home and spend two to five hours on the couch because my body hurt from trying to keep up with those little guys.  My loving wife finally said no more.  She knew I loved working with kids but she hated seeing me hurt so much.  I am now working with the infants which I enjoy just as much, if not more.  But I felt like I had to explain to those I worked with as to why I was no longer able to help with the walkers. I’m sure I didn’t have to but that’s just the type of person that I am. I don’t want someone to think I’m not doing something because I am lazy or just don’t want to. I’m not looking for sympathy I just don’t want someone to think less of me because I don’t do something that seems like a basic, simple task.  I am a rather young person that should be able to do anything, but when  I have to lift something heavy I have to find someone else to do it because of my heart issues.  Do they judge me?  Don’t know but I sure feel like they are thinking, “Why can’t he do it?  He looks fine to me.”  It is so frustrating.  But this is my new normal…

You give and take away

We were in church for Thanksgiving Eve service and one of the worship songs we sang was “Blessed Be Your Name” by Matt Redman. I had to stop at one point and hold back the tears. I had the lump in my throat and all. The lyrics that always get me on this song are:

You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name

It brings back thoughts of what life was once like for me and then the thoughts of lying in a hospital bed with my life, the most important thing He has given me, slowly being taken away. But just as the song says, my heart chose to stay. I know I don’t do everything the Lord would like me to do, but I try. However I could try harder, that I know. We are going through some rough times at the moment and it just makes things even harder than they already are. Songs like this one really hit hard and while I think this one would still have an impact on my life I think it is multiplied many times over because of the GBS.

There are a couple other parts of this song that really make me think but the one above is the ones that really gets to me.

Just wanted to share this one with y’all, and maybe see if any of my GBS survivor friends out there agree or have had the same types of feelings when they hear similar songs.

The entire lyrics can be found below. They are courtesy of lyricsbox.com.

Blessed Be Your Name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name

Blessed Be Your name
When I’m found in the desert place
Though I walk through the wilderness
Blessed Be Your name

Every blessing You pour out
I’ll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be Your name
When the sun’s shining down on me
When the world’s ‘all as it should be’
Blessed be Your name

Blessed be Your name
On the road marked with suffering
Though there’s pain in the offering
Blessed be Your name

Every blessing You pour out
I’ll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name

We went to Disneyland!

Well, it has been a busy October so far!  I have spent most of the month thus far in Los Angeles, California.  The first Monday of the month I attended an Intuit Solution Provider Conference that went from Monday thru Thursday.  We got out of town at about 11 in the morning and arrived in LA about 6 hours later and the conference started at 7 that evening.  We left a couple hours before the conference officially ended, but I had a football game to get too and Dad had my sister’s concert to attend.  So, once we got into town I got into the car and drove straight to the game and finally made it home about 8:30 that night.  I used Friday as a day of recovery, but spent most of the afternoon and early evening working from home.  Then went to the varsity football game to see Allison do a color guard performance at the game; they did very good for the amount of practice they had.

We did our normal weekend stuff and then on Monday morning it was back in the car for another drive to LA with the family this time for our trip to Disneyland!  We arrived a little after 3 p.m. and after we got settled we headed over to Downtown Disney for dinner and shopping; this is when the pin collecting started.  The only souvenirs that came home where hats for all and a lanyard full of collector pins around everyone’s necks.  We had a good trip overall.  There were only a couple things that we didn’t do that we would have liked.

The days were long and included a lot of walking!  Tricia tried to get me to get a wheelchair, or electric scooter, but I refused to because I was taking pictures and it would have only slowed me down more.  It is hard to believe that less than two years ago I was lying in a hospital bed about 75% paralyzed.  I did have a lot of back, hip, leg and foot pain, but Tramadol, muscle relaxers and a good night’s sleep helped me make it another day.  I didn’t get up until after noon on Saturday and even after I got up I found myself lying on the couch for most of the afternoon and evening.  I was able to make it church this morning and work with the toddlers, but my knees are letting me hear about it.

I did take 1,100 pictures on our trip.  They are not all good quality and there are several duplicates as “just in case shots”, but overall I am happy with the results.  I will be adding the shots that “make the cut” to my Flickr page later.  I will add another post once they are up…

Overall I am doing well.  My body is still not the same as it was before GBS and I don’t think it ever will be, but I am able to do many of the things I did two years ago I just don’t have the same level of endurance.  I only rode a couple rides during our trip to Disneyland, but that was because of the heart condition (thanks to Marfan Syndrome) and had nothing to do with GBS.

Thanks for reading this far and check back for Disneyland pics soon…

Oh, I have added a new email subscription to my blog, make sure you check it out and subscribe!

Photos and Gnu news

Well here we are again and it’s only been a few days, yes I am fine, just had something else to share and had a few extra minutes to do so.  In my last post I mentioned my Aunt’s selection to be published on an on-line gallery and now I have joined her. Please check out my work on Ballcap and Buttermilk Press, http://www.ballcapandbuttermilkpress.com/ballcap/Donovan_Sachs.html.  Once your done being amazed by my work (just kidding) please click on the Photography link and view my Aunt’s work, her name is Theresa Sachs-Lehman.  If you know anyone that might be interested in purchasing some new prints for the home or office please feel free to send them my way.  I plan on getting Flicker updated very soon.

Also, on a side note, I have been working on another project and just wanted to share with you as well.  My Uncle has recently had a children’s book published and the book and a couple t-shirts are up for sale.  I have been working on the web site and just wanted to share it with everyone.  Please visit the site and pick up a book, or two, or three for kids, grandkids and anyone else that might be interested.  They would sure make great Christmas gifts, and if you act now you can get them signed and personalized by the author for FREE!  In today’s economy I’m not sure you can anything FREE so get out there and get your Stu the Gnu, I Knew a Gnu! Book and T-shirts today.  Wow, that was like a little commercial wasn’t it.  Oh well, what are you waiting for get to www.stuthegnu.com right now!!!

So, this was more of a double hitting infomercial but every now and then it just has to happen.  At least I didn’t go into the “help a poor, sick guy out and buy some stuff” speech.  But I am saving that one for when I am really really poor…

Thanks for sticking with me this long.

Saved by the blood,

Donovan

Overdue Update

Hello world, more importantly hello to those that are reading this.  It looks like I will start this off the same way I have started may of my previous post, and that is with a comment about how long it has been since I last posted.  I truly never plan on a large gap between posts, but it seems inevitable.  But here we are once again.

First, and probably the reason that most of you that read this are here, my health.  If you saw me walking down the street you would never guess that I am a GBS survivor, and that is a blessing, trust me.  There are days that I have a bit of a limp or some other oddity to my walk from either soar knees or pain in my feet, but those days are not as often as they once were.  I am still on Tramadol for the pain that I still have, but thanks to the good Lord that is all that I am taking on a regular basis.  I am taking Aleve every once and a while, but not every day like I was before.  I still tire quickly, and stairs can take me down quick.  Too much time in the heat can really kick my butt at well, but I guess that isn’t too much out of the norm especially when you live in the desert.

There is not really any news in the area of the Marfan Syndrome.  I am doing my best not to do things that would strain the heart and I am coming up due for a visit to the Cardiologist in the not too distant future.  I must say that it saddens me a bit to have to say that when we head to Disneyland I will be keeping an eye out for all the signs that warn folks with heart conditions that the ride could be “hazardous to your health”.  Guess that is the nice way of saying, “If you ride this ride you could die.  So don’t say we didn’t warn ya!”

Our church is starting a new campus and this time I will be working with the toddlers.  We had our “soft opening” today and it went pretty well, but sure did tire me out.  I truly enjoy working with all the kids.  They are such great little people of God, can’t wait to work with them each and every week.  Please keep us in your prayers, our church, the workers and the town of Queen Creek.

The family is well.  The kids are playing Football, Soccer and getting ready for the coming Cross Country season.  Tricia is still doing school and deep down lovin’ it, although it can get a bit stressful at times, but she is doing great and has outstanding grades.  As for me, work is good.  I have quite a few projects that are “on the bubble” so to speak.  All I am waiting for are the right people to say the job is a go, and if they all say it at the same time I will have a nice little, or not so little, backlog of work waiting on me.

Finally, my aunt recently had several of her photos posted on an online gallery and when I “liked” their page on Facebook I too got invited to share my photos.  I am in the process of working with the host to determine what photos will be posted.  It looks like they will all be black and whites.  I have not been taking pics as much as I would like, but I did take a few macro shots of Tricia’s Birthday Lilies I bought her.  Maybe I will add them to my Flicker site and share them with the world soon… (they’re on Facebook but for those of you how don’t “Facebook” I will put them out of Flicker along with some more of my other works soon…)

Well, that will be it for now.  As always I will try to write more soon, but please don’t hold your breath in anticipation, I would hate to be responsible for the loss…

Saved by the blood,

Donovan

Hello all

Hello all!  Well, it is GBS/CIPD Awareness Month, and while those of us “blessed” enough to have acquired the disease are well aware of what it truly is, there are doctors, nurses, other medical professionals and most of the general public that have no clue to what it is.  So, for those of us that have gone through, or are currently going through, a battle with this either GBS or CIPD get out and educate someone this month.  If you really feel up to it, get out and educate a ton of people!

Okay, now that I am done with the commercial I will move on to a much overdue update on me.  As usual, I have wanted to post something for a long time and just haven’t taken the time to sit down and do it.  I’m not sure if there is something psychological behind my lack of updates, or if I am just straight up lazy, either one isn’t a good excuse.

Overall I would say I am doing well.  My feet seem to be getting better; there is still a bit of numbness going on and at times that feel a little crapped, but nothing like they used to be.  I do tire rather easily still.  For example, last weekend I was trying to clean up the garage and clean up the front yard a bit.  I lasted for about 2.5 hours, which wasn’t bad, but there wasn’t really any major lifting, it was just moving stuff around and tossing out trash.  After the cleaning I ran to the store real quick and then it was on the couch for the rest of the day/evening for me.  During the week I seem to do okay until about 7 or so, then I’m just burned out.

I am still on a few meds, but they aren’t as bad as they once were.  I am still on gabapentin and tramadol, and just for giggles I toss in Aleve to help out where the others don’t do the whole job.  I have tried to stop the gabapentin, but it doesn’t seem that I am totally ready for that step yet, I have cut my dose in half however.  As for the tramadol, I am taking a total of 300mg a day.  I start my morning out with 100mg while I’m still in bed.  I give it about an hour to kick in before I get up and start my day; this seems to work really well.  Then I get my second dose in right around time to head home, this way it can start doing it’s job while I’m driving home.  Then the last dose is taken a bit before bed time, this way going to sleep isn’t too bad.  The tramadol is usually accompanied by an Aleve, on a rare occasion I will take two, it depends on how bad my joints are feeling at the moment.

I have been trying to get involved a bit, where I can, and one of the ways I have found is to help out with one of the preschool classes at our church on Sunday mornings.  I am up and playing with the kids, working on crafts and helping keep their minds off the fact that they miss mommy and daddy.  There are some weeks that are more challenging than other, but so far I have made it each time I have been scheduled to help out, which is every other week.

Well, that is the basics of how things are going, nothing earth shattering as you can see.  I am going to make a quick stop here in order to get this posted.  I started this several days ago and it has sat, waiting on me to do whatever it is I thought still needed done (not sure what I thought that was).  So, here is my update and if I can find it in me to do another in the next couple days I will….

Saved by the blood,

Donovan