What hydrocephalus has taught me

Hydrocephalus has taught me and my family physical, emotional, and financial hardships, disappointment, and heartache.  Lots of heartache.  But it has taught us so much more than that.

Sometimes I look at my son and wonder if he will resent me because he had to grow up a little faster and has had a harder life than most kids his age.  But then I realized that having a mother with a chronic medical condition has been a blessing to him.  He is one of the most caring, empathetic kids I have ever met.  Also he is very accepting of everyone.  He is not afraid of other kids that may look or act different than him.  Instead he wants to know how he can help them.  Every time he finds money on the ground or around the house he hands it to me and says to give it to hydrocephalus research because he wants everyone to be cured of it.    He tells me all the time that he wants me and all my hydro friends to never have surgery again. 

Because I often can barely take care of myself, I had to teach my son early on how to take care of himself.  He can prepare his own breakfast and lunch and knows how to do many chores around the house.  He truly is a great help to me sometimes.  Although it saddens me that he needs to have so much responsibility at his age, but I know it is good for him.  I think this will make him a great husband someday.

Also I think a lot of people try to shelter their kids from disappointment.  Why?  Life is full of disappointments.  My son has learned that from having me as a mother.  I can't even begin to tell you how many plans we had to change or just completely cancel because of my illness.  Sometimes my son gets very frustrated as any child would but most of the time he is understanding.  He is learning that life does not always work out the way we want or plan.

I have seen a significant change in my husband from when we first met.  He now has empathy for others.  (I truly mean EMPATHY not SYMPATHY.  There is a big difference and I firmly believe we need more empathy in this world.)  Whenever my husband hears about a colleague or friend being in the hospital he is one of the first people to visit and offering to help.  Honestly I think he worries about my good friend Stephanie who also has hydro just as much as he worries about me and that pleases me.  Also he has never said "but at least" to me when it comes to this condition.  Instead he acknowledges how difficult the situation is and wants to know how he can help.

Hydrocephalus has taught me so much as well.  Often I think why me and get very frustrated with life and other times I see it as a blessing.  Having it has taught me to be very grateful for everything including the little things in life. People are constantly telling me what I should be thankful for and they really shouldn't. I am probably more thankful than the average person. I cherish each birthday probably more than the average person as well.  I see each new year as an accomplishment for me and it should be celebrated.  Also I don't take anything for granted.

Having this condition has also taught me empathy, kindness, forgiveness and has made me a strong person. All I ever wanted to do in life was be a writer.  All the trauma that I have been going through since the beginning of 2014 finally gave me the courage to write.  Now I have this blog that is hopefully still helping others and has been therapeutic to me.  Whenever I get better, I hope to finish that children's book and then write a novel.  I'm not sure if I would have had the courage to do this a year ago.

Although I don't enjoy having this condition whatsoever, I am not convinced that I would be the same person that I am today if I didn't acquire it at birth.  I may not have met some of the wonderful people that share this affliction with me.  Additionally I may not have seen true caring human nature if it wasn't for some of the medical providers that have crossed my path through the years.

So readers I hope hydrocephalus has now taught you something.  Be kind to others, have empathy, and if you are blessed enough to be healthy then live every day like it's your last.  Life goes by so quickly and is too short.  You all know what I'd be doing if I could-I'd be dancing!  Get out there and dance like no one is watching you.

If this blog has helped you in some way, please share that with me in the comment section. I would love to hear from you.  Helping others with this blog means so much to me and I want to know if it is working.  Thank you for reading!!!

A Special Place in my Heart

No one enjoys being in the hospital, but having compassionate medical providers can honestly make the stay more pleasant.  In my lifetime of being in and out of hospitals and doctor's offices, many medical professionals have made a lasting impression on me.

The first medical provider that touched my heart was my pediatric neurosurgeon.  The man was by no means perfect but who is?  Everyone makes mistakes, even medical professionals.  But he comforted me in the scariest moments of my life.  He always checked on me just before I went to sleep for surgery and assured me that everything was going to be all right. 

He also educated me on my condition and gave me material to read about it.  Whenever I got frustrated he sat me down in his office and reminded me that he had shunt patients with 90+ surgeries.  Lastly, he told me that I could be whatever I wanted in life except a flight attendant because of the elevation and pressure.  He even said I could be a neurosurgeon just like him.  That kind man took care of me for 18 years.

I can honestly say that I felt the same way about my regular pediatrician.  He was very caring and went above and beyond when treating me.

In 2003 I had a shunt revision due to over-drainage.  I had just been transferred to a new neurosurgeon because mine left the practice.  I was transferred to a surgeon who was pediatric and adult.  I just loved him because he kind of treated me like a child.  I had a really hard time transitioning from pediatric to adult neurosurgery.  (I will be talking about that in a future post.)  He made me feel so calm and took my concerns seriously.  He trusted me immediately because I had been shunted all my life.  Did I mention that he was easy on the eyes?  Just ask my mom...

In October I was assigned to a man with the same name as my husband in the recovery room.  He was so soft spoken and seemed to genuinely feel empathy for what I was going through.  I was assigned to him again when I had a shunt infection in December.  He remembered me and said that he was glad to be taking care of me again.  When he told me that the shunt was infected and had to be removed completely I started bawling because that meant another surgery once the infection in my head cleared.  That man stood by my gurney, told me how sorry he was and acknowledged how horrible the situation was.  Then he held my hand while I cried.  I may have short term memory loss but he is already stored in my long term.  I will never forget him.

I could go on and on about all the wonderful people that have taken care of me over the years.  SO MANY nurses, physician's assistants, X-ray technicians and let's not forget my current neurosurgeon.  I hope these people know how grateful I am that they all crossed my path.  Thank you all so much.

Not every medical professional will treat you kindly.  I've had a fair share of that experience as well.  But I try to keep in mind that they are people that have bad days just like you or me.  As I said before no one is perfect.

If you find yourself at the doctor's office or in the hospital be respectful to the medical professionals taking care of you.  They work so very hard and have to deal with so many obstacles on a daily basis. If you come across one that took great care of you, take the time to call the doctor's office and/or hospital to let their supervisor know what a good job they are doing.  They deserve to be recognized for their exceptional care.  Also it wouldn't hurt to bring them some baked goods to brighten up their busy, hectic day.

Update to the 25th Surgery

For the first three days after surgery I was pretty much unconscious.  I slept all day and all night.  Once I started sleeping less and being upright more, I noticed that my low pressure headaches came back.  Along with my annoying eye twitch.  When the headaches are at a 10 on the pain scale, I have trouble walking.  Basically I am back to laying down all day.

Initially, the returning symptoms devastated me.  But then it dawned on me. Maybe this is a good thing.  Maybe something good is finally going to come out of all this insanity.

Today I had my stitches removed.  Although I wasn't scheduled to see my doctor, he came in to see how I was doing.  I am going to have another CT scan within the next two weeks and then I will see him in about a month.  We pretty much have a game plan set and this does include surgery again but if this works, this may be the last one for a very long time.  I don't want to reveal too much until he and I can talk about it more but I am very hopeful that this is going to work.

I do need to clear something up.  Recently people have been telling me that my husband told them I was fine after surgery and they seemed very shocked that the symptoms returned.  The day of surgery I was so sick that I only got out of bed to use the restroom.  I did walk the halls the next day before leaving the hospital but after that I was unconscious for three days.  It wasn't until after I was up and around after being asleep for three days that I noticed the symptoms were back.  So I am not convinced that the surgery ever really worked in the first place.  Besides, sometimes it takes awhile for the anesthesia and pain medication to get out of your system.  You may feel better than you really are. I think all of us, including myself, really kind of jumped the gun on this one because we were hopeful that it would work.  I think it's best to wait a few days before giving updates and letting people know how I am doing. 

Also it's hydrocephalus.  Things can change at any time.

So stay tuned for updates in the future. Also I have plans to write more articles to talk about my journey thus far and spread more awareness.  Thank you for reading.

I survived 25

I thought that I was mentally prepared for my 25th surgery.  But when I stepped into the pre-op area, the trauma of the past few years came at me like a 10 foot wave.  I felt like I was slapped in the face and knocked to the floor.

My head was pounding that morning so I laid flat in pre-op and listened to music on the I-pod until it was time to take me back.  I had two nurses that had taken care of me in October and they remembered me!  They were both really sweet.  I asked the hospital if I could walk into surgery but they said no because of chemicals they put on the floor. 


When it was time for them to take me back, the tears started flowing and they didn't stop.  It just broke my heart that I was having surgery again after having two less than four months ago.  And I was in no better shape than I was in October when all this hell started so I basically went through all this for nothing.


The anesthesiologist met me at the operating room door to give me something for anxiety.  It didn't really help though.  He also let me take my I-pod into the operating room which was very nice.  That didn't help much either.  I literally cried myself to sleep on the operating table.


I spent about 45 minutes in recovery and then was taken back to my room.  The first time I got up to use the restroom I realized that my low pressure headaches were gone.  I no longer felt like my brain was constantly being squeezed.  I also realized that I was no longer having trouble walking.  Turns out that wasn't caused by the brain bleed at all.  It was a side effect of being over-drained.  That is really scary when you think about it.  I was so close to having some serious damage to my body.


Shortly after I got to my room, I started feeling very nauseous.  I pretty much sat up with my head over a bucket for the majority of my hospital stay.  That nausea went on and off for about three days.  It was so bad that I actually sent my husband and son home Friday night.  I didn't want my son to see me like that.


My blood sugar level had to be checked regularly because it was high during a routine blood test recently and high at the hospital.  I needed to have one injection of insulin.  They did a blood test at the hospital where they could check my levels over a three month period.  The levels were normal during the three month period and went back to normal during my stay so I don't have to worry about it anymore.


I had a great over-night nurse.  She kept me company when I couldn't sleep and took good care of me. 


The next morning my doctor came in to check on me and then I was released.  I have been pretty much sleeping ever since.  I feel like my mind and body are fatigued.  My incision is really swollen so I am feeling a lot of pain. I did have some pressure headaches initially but they seem to be gone now. 


I really wanted to dance with my surgical team but when I realized that wasn't happening, I thought I could dance with my doctor in my room.  But I was so sick that I couldn't make my dance video with him or with my husband.  We were also supposed to take a family photo in the hospital but that didn't happen either.  My husband keeps reminding me that at least I am still alive.  Yes that's true but 25 surgeries is a big deal.  They are traumatizing in case people can't tell.  I just wanted to celebrate that I have survived that many and do something that makes me happy.  I'm sorry but it does make me sad that I couldn't do any of the things that I had planned.  I still want to ask my doctor if we can make our video at a later date.

So now that it's all over, I have a lot of healing to do physically, mentally and emotionally.  And I will be doing it on my terms, in my time. I will not be in a big hurry to recover just so I can get out and do things this summer. Rushing recovery could only cause a setback.  I am going to take as long as my body needs.  I have pretty much been laying down for three years so it is going to take a long time to get my stamina back.  The only thing I am concerned about is getting to CA this summer to see my family, friends, and meet my niece.  That is what matters right now.

Thank you every one for reading this and supporting me.  Also a big thank you to all my friends that are taking my son different places during his spring break this week.

                                            Trying to get my headache under control prior to surgery.

                                         Feeling so sick after surgery.  This is what these surgeries are really like.

Recovery

Since I am just four days away from my 25th surgery, I thought I would share some of the ways that I recover after surgery.


First and foremost I need to sleep!  Resting is the best way for the brain to heal after brain surgery.


Although rest is essential, I make sure that I take a couple of walks a day.  Walking is an important part of recovery. 


Of course I love listening to music.  I always take my I-Pod to the hospital so I can listen to a special play list before they take me into the operating room.  Then I have the hospital give me the I-Pod so I can listen to it in the recovery room.  Once I get home Pandora is usually playing on the television.


When I am not listening to music, sometimes I enjoy watching movies.  Mainly comedies but sometimes the kid in me still likes to watch Disney movies.  I have already told my son that we need to have a Disney marathon one of the days he is home on spring break.


I am an avid reader. Once I have given my brain enough time to heal so I can concentrate, I will read a book.  I love mysteries, detective novels, and horror.  Sometimes it takes me awhile to get through a book because my memory is so bad and I often have to re-read pages.


When I was a kid I always wanted banana Popsicles at the hospital.   The hospital that I use now doesn't carry them.  We often go on an odyssey to find banana Popsicles but when we do it's like heaven to me. 


I enjoy doing word finds so I work on those when I don't have blurry vision.


I am a chocoholic and usually want some after surgery.  Just a little of course because it is important to eat healthy after surgery and drink plenty of water.

I make sure to keep my incisions clean and dry.  I clean anything that I lay my head on frequently.


That about covers it.  What are some of the things you like to do or have after surgery?

25th surgery here I come!

My 25th surgery is scheduled for the morning of April 3rd.  Now that surgery is scheduled, I can finally reveal what my plans for the 25th surgery are.  I needed to obtain some information from my surgeon before I could reveal the plans.  I had hoped to have a different outcome but here goes...

Several months ago I found a video online where a women was having a double mastectomy and she danced with her surgical team in the operating room before surgery started.  I immediately knew that I wanted to ask my surgeon if we could do that.  Not only did I want to dance in the operating room but I decided that I want to make a dance video with all my family and friends that have supported me through the years.

My surgeon was shocked to say the least when I told him about my idea.  Sadly he pretty much shot me down but I can still make my videos with everyone else when I am better. 

My other plan was to get a tattoo to represent the song that helped me get through so many surgeries and the last hospital stay.  That song is Make Everyone Happy/Mechanical Birds by Modest Mouse.  I got a beautiful mechanical bird on my right forearm about  six weeks ago.  I had the tattoo artist put the number 25 on its wing.  Now before I am put to sleep I can look at the bird and remind myself that I am strong and can do this again.  Plus he will keep me company in the O.R.

Besides being incredibly talented my tattoo artist is just, well, AWESOME!  He agreed to make a video with me which we did this morning at the tattoo parlor.  How amazing is that???  We danced to Modest Mouse naturally.  I haven't been able to stand up well since then but it was so worth it! So thank you Omar Kahn and Columbia Tattoo & Piercing in Vancouver, WA!  Also thank you my dear friend Shirley for taking me today!  Glad you could be a part of it.

I have lots of people I need to make dance videos with in California, good friends in Texas, and people in my area.  When I am better I will start contacting everyone so we can get our groove on.  Who knows we may all be YouTube sensations in the next year or so.

I think I will also walk into the operating room rather than being wheeled in.  I want to show Hydro that it can't keep me down.

Now if I can just get Isaac Brock from Modest Mouse to come to the hospital next week to make a dance video in my room that would make all this so worth it!  I'm just across the river from Portland. wink wink

Wish me luck readers.  Thank you from the bottom of my heart for taking the time to read this blog and for supporting me.

Getting the tattoo

The final result

The Invisible Medical Condition

Bear with me but this is going to be a long post.  But please take the take to read through it all.

Unless someone just had a shunt revision and has a large incision on their head and maybe neck, no one would be able to tell that they suffer from hydrocephalus.  Due to that, I think many people believe we are faking or they think it's all in our heads.  Well yes, yes it is.  My head hurts constantly.

I can't speak for all hydrocephalics, but these are some of the misconceptions I have encountered in my lifetime.

Trust me when I say I am not being lazy because I need lots of rest. I have a brain injury.  Both my mind and body need rest for my brain to heal properly.  I literally can not function when I don't get enough sleep, as anyone wouldn't be able to.  I get very confused and can't concentrate on anything.

I am not a flake.  I don't mean to cancel on plans at the last minute.  Sometimes I have no choice.  A shunt failure can happen at anytime.  This is why I often respond to invites with maybe or I will try to be there.  I do my best to do activities in pain but sometimes it is too much.  Just know that I don't enjoy missing out on the fun.  It's difficult knowing your friends are out having a great time while you are stuck at home.

Just because you may see me smile in a picture do not assume that I am feeling good.  I have always tried to not show others how truly bad I am feeling.  That smile is just me trying to make the best out of a bad situation. 

My problems are not stress related.  I actually adjust to stress fairly well.  My problems are due to a medical condition within my brain.  The brain is a pretty vital organ in the body.  If it's not working right, nothing works right.  Also when I say that I am having new side effects from this condition, please accept it as that.  It's not stress related or side effects of medication I'm on or any other excuse you can come up with.  There are only so many times a person can take brain pokes before damage starts being done.  Especially if you have a brain bleed, which I did.  I don't understand why some people in my life try to blame everything else instead of accepting the fact that I indeed have some brain damage.

People should be kind to everyone and try not to judge others.  You never know what someone is going through.  Just because they look fine does not mean that they are.  I also firmly believe that no one should tell you how to feel about a situation.  Everyone is entitled to have their own emotions and deal with those emotions in a way that works best for them.

When I first started working full time after high school, I used to be accused of faking constantly.  People, not just previous employees, have talked behind my back, have told me how I should feel, and said to just get over it.  Their tune always changed when I had a revision though.  Kind of hard to "fake" brain surgery.

But I have decided that I need an attitude adjustment.  I am going to try not to be offended or bothered by incredibly insensitive comments that are directed towards me.  Let me tell you there have been many over the years.  I have come to realize that some people just don't understand and I don't usually let on to how bad things really are. 

Besides hoping to help my fellow hydrocephalics and sharing my journey, I started this blog to educate others on this condition.  Also relate what it's like to live with a chronic condition as so many people in this world do.  This is something that I will have to face for the rest of my life.  A lifetime of brain surgeries!  I don't know how much time I have on this earth so I have realized that I have to make the best of it.

From now on I won't allow people to tell me how I should feel and I will let the insensitive comments slide off my shoulders.  Sometimes it is difficult to know what to say to someone in a crisis.  I know at times I was guilty of that.

I know that everyone goes through difficult times in their lives and I have empathy for others.  Ask anyone who truly knows me.  I am genuinely concerned for other people's well being.  I am deeply saddened when I hear about my family, friends, and even strangers going through a crisis.  At times I may not be there for you as much as you'd like but know that it's not intentional.  I want to be there but often I can't physically or mentally.  I live in a land of confusion most days.  It's difficult for me to even write this post.  I won't say how long I had to spend on it. 

For me, the best comfort I can receive is when someone acknowledges how hard the situation is and cries right along with me.  You don't need to remind me of all the things I should be thankful for.  Trust me I know better than most people.  I am incredibly grateful for everything I have in my life.  Including the bad times because they make me grow and teach me lessons.

This year of 25 and still alive I have a lot to work on.  First and foremost I need the pressure in my brain to be corrected so I can function.  Then I need to focus on repairing my relationship with my son (which is already in the works), write my children's book (being an author is all I ever want to do in life), keep up on the blog, and work harder on my photography.  The last thing I need to do is let go of bitterness and anger at life.  After all, we'll all float on, okay?-Thank you Modest Mouse for seriously being my saving grace over the years.