Another day

So it turns out I am scheduled for another surgery. . . . .

Kyle and I met the ophthalmologist on Thursday first thing in the morning.  He did some testing and concurred with the Headache Clinic that my headaches would improve with surgery.  They will cut through the left side of the left eye in the white area.  back behind the white area is a muscle that they will cut, retract 9 mm and attach again.  It is scheduled for April 14 (I think--I'm not by a calendar).  It is going to require anesthesia but is a relatively short 20 minute same day surgery.  The recovery should take around three days.  Simple.

My heart is rebelling against another surgery, though!  I so just don't want to deal with again!  Simple surgery, simple recovery, simple, simple, simple.  Compared to brain surgery this is nothing.  I think it is just the thought of it!  It is two years this month that I was last in the hospital and had a surgery.  This isn't really what I had in mind to "celebrate" the milestone.

Okay, I am really whining and that will get me no where.  I am thankful that another solution has been found.  As we have reflected on all the surgeries that I have had, we believe that the chiari surgery and getting the shunt were necessary at the time.  We don't know if this will eliminate the headaches and the doctors were quick to say that although it should help a lot they couldn't guarantee anything.  My body seems to be a mystery with very odd or unique problems.  Honestly I am not a hypochondriac or a person that craves medical procedures and hospital visits.  They seem to come knocking on my door over and over, though.

For now I am patching my left eye as much as possible.  One full day without it and I am pretty miserable by night time.  I hate going out in public with it patched, though, so that is a quandary.  Going back and forth several times can cause a bigger headache as well so I will see how things go.  :)  One day at a time!

Saturday

So far the test has been interesting.  It is very hard to be a one eyed person I have found!  Also, it feels a bit silly to wear glasses with paper over one side.

This morning I woke up feeling remarkably well.  Yesterday was a decent day although I was so exhausted again that I took a nap.  We struggled with what I should do today.  Finally, I just decided to take the patch off and see how I do.  Interestingly, I could feel almost a little bit of a "pull" in my right eye.  I don't really know how to say it any differently.  I will see how today goes.  At this point, in my mind the jury is still out on this whole thing. 

What I think that I will do is go without today and see how I feel.  Then make a decision tomorrow about covering the one eye or not.  I will probably go back and forth a few times to see if covering the eye is truly what is helping or if perhaps I am feeling better because of the botox treatment.

Thank you for the encouragement and prayers.  It is honestly quite discouraging to me to be dealing with the stronger headache again. 

A Wednesday

Things are still a little tough around here with my head.  Obviously it isn't a secret since it is on the blog but I have tried not to make such a big deal out of it just because our family, but especially me, is so sick of these headache issues!

I saw the “Eyegraine” doctor first yesterday.  After some testing, he is quite convinced that my eyes are the issue.  He is having me do an experiment where I have one lense of my glasses covered so that I am only using one eye for everything.  He said that after three to four days of that if my headache goes away we will know that is the problem.  I hope it at least goes down.  It seems to much to expect to have it go away entirely. 

Being with one eye is challenging and right now I don’t think it is helping the headache.  His testing showed that my eyes are not properly aligned and so that they are working particularly hard to focus.  That in turn irritates a nerve connected to the eye that runs through the side of my head and down the neck.  He thinks it will take that long to find out because my nerves are so irritated.  We’ll see how this goes.  If it is indeed the problem, he doesn’t think replacing my lenses will help because they will continually need to be adjusted.  So he proposed that I see a particular ophthalmologist for further testing if this seems to be the issue.  He may then suggest a surgery to cut one of the muscles in one of my eyes and I think reattach it (I am not sure about the last part) so that my eyes will more closely align.  He thinks that I will still need the “Eyegraine” lenses but that I will not have nearly as many problems.  He said that my eyes are 90 pixels off, whatever that means.

At this point my headache has been more intense than it has for a couple years besides the occasional bad day.  My ears are ringing loudly and I am having a tough time processing and thinking through things.  It is very hard to go back to this day in and day out.  Please don't laugh too loudly if you happen to see me because it does look strange to have one side of my glasses covered up!

This morning was especially hard because I had a big day yesterday and chose to go to a concert of the older kids last night.  Huge day and payback came today.  After a hot bath and nap I am picking up a bit.  I need to since today is Riley's birthday! 

A little decline

So I have deteriorated a bit once again.  I've noticed that the last month or so I have slowly declined but started feeling it more last week and it hit me hard this week.  Wednesday night Kyle gave me a shot and then I was able to get in to the neurologist Thursday.  I hadn't really believed that the botox shots were really helping my headaches since I continue to have the headache every day. However, since I have declined a ways it is very possible that it is because I haven't had the most recent series. 

The doctor gave me the 39 botox shots in my forehead, side of my head, neck and shoulders.  Then because I was feeling pretty miserable even though I had taken a Toradol shot a few hours earlier she gave me two other shots to try to contain the headache.  Thankfully my Dad drove me down there and back because I didn't feel confident in driving myself.  The shots helped but I am still struggling a bit.  My ears are ringing loudly and I can feel the stronger headache lurking.  I went to physical therapy today to get some relief as well.

The doctor asked me to come back on Tuesday for a consult and to check my eyes to see if the "Eyegraine" prescription needs to be adjusted.  They will also review current medications to see if there is anything else going on.  I can feel myself going the wrong way so I really hope the doctor here can put her finger on what is happening and help me get this turned around again!

A day in February. . .

Yes, I have neglected my blog.  That does mean that life has overall been a little more "even" or stable.  My strength is possibly a little improved since I can walk further than I have been able to for a few years.  On the other had, I do wear out pretty quickly and still struggle with stronger headaches if I am not careful.

Today this post is just a bit of rambling.  Even though I look healthier and on the outside things appear to be back to normal for those that don't see me so often, I often feel that that is so far from the truth.  I love to hear that I am looking better but yet part of me wants to say that how I look and how I feel can be entirely different.  Yes, I am so very thankful for doing as well as I am.  I honestly didn't think that I would ever do as well as I am.  That being said, I am struggling with the balance.  I have the energy to do a limited amount of activity.  How do I choose what to do?  I have a great deal of responsibility at our office and demands on my time that are hard to meet.  Yet our kids need me so badly.  Then there is my neglected husband.  What about my ill father and father-in-law?  Add to that the activities of the kids, potential of doing "normal" things like seeing friends or going shopping.  Yep, there just isn't the energy.  So I have cut most social activities including Bible Study.  I try to attend the any of the activities the kids are in which is often more than I can handle so I pay for it.  And I struggle with getting through each day.  A house to keep clean, clothes to wash, meals to make, schedules to keep . . . .What to do?

So today as I sit here with a headache, which is daily but maybe slightly stronger as the week has progressed and I am nearing the end of my ability to push through, I am having a pity party.  Doesn't do any good so perhaps if I write about it I can leave it where it is and move on.  Rarely do people live the lives they had dreamed of, but I never would have dreamed that headaches would dominate and control my life.  Why, when we have four kids who need a real mom that is part of their lives?  God knows the answer to that question but I don't. 

I just read this story by another person with a chronic illness that explained how she rations her time.  I thought it was so appropriate!   Here is the link:  http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Few days before Christmas

Time seems to be moving so quickly!  I seem to be holding pretty steady for which I am thankful.  With all the busy and crazy times going on I am obviously not updating often.  Yes, that means things are staying about the same!  When things are like this, though, I do find that I have more frequent bad days.  They are frustrating!  Compared to where I have been, though, I continue to be thankful.

Of bigger concern our lives, though, have been both sets of parents.  Kyle's dad is just not picking up after his big surgery and we are concerned about that.  At eighty years old, it just isn't so easy to recover from a big surgery.  He isn't moving around much and eats very little. 

My Dad completed chemo and radiation after a couple months and just had a big surgery that he is recovering from now.  He is pushing himself to get better but has a long ways to go.  Unfortunately, he will start chemo again in about three weeks. 

It is hard to see our parents struggle and suffer.  Perhaps I am experiencing what they experienced a few years ago with my struggles.

Our kids are all making progress although the consequences of my ongoing health problems continue to show themselves.  With so many other things happening I have to let everyone know that if you have gotten Christmas cards from us before, there won't be one coming out this year.  I just didn't have the energy or time to put that together.  I mentioned to the older kids that they could write a letter this year that we could send out but they didn't take me up on it.  Sorry!

We are thankful for the Lord's continuing care for our family and truly do appreciate so many continued prayers for us!

Friday

I can't believe it has been this long since I have written on my blog!  I just looked at it and realized that I have been pulled into a few too many directions and therefore have forgotten about my blog.  Evidently that means that I am making progress and not needing this as an outlet.  More likely it may indicate that I am just overwhelmed and haven't gotten to this.

My head continues to give me challenges but for the most part it is doable.  We've noticed that I've needed to have shots for pain more frequently in the last few months but I think part of that is that I am a little quicker to use them.  The doctor here just says to use them when it starts getting a little stronger so I've done that.  Fall seems to once again have caused me challenges.  It seems that the change of weather just sets my head off and that is frustrating. I just told Kyle the other day that I dream of waking up one morning and not having a headache at all.  That would be so amazing and such an answer to many prayers.  But so far the Lord is saying no so we continue on.

Our kids still seem to be having challenges which were most likely aggravated by my ongoing medical issues in past years.  Two seem to be doing better and two are really struggling.  That is so hard!

Kyle's dad recently had open heart surgery at age 80.  The surgery went well but the recovery is very slow for him.  My dad has cancer and has completed the first steps of chemo and radiation.  He will be having a major surgery in a month and then more chemo after that.  Many people are struggling around us.  Life is so full of pain and hard times. 

Each day is a challenge, some more than others.  Our dreams of me being healed and entering life that is a bit more normal and spending time with friends occasionally just doesn't seem to be becoming a reality.  I am sad but I think we have accepted where we are and moving forward.   It is reassuring to know that this is God's plan for us and not just random events.  Not our first choice, but that is okay.

If anyone is still reading this, please continue to pray for my headaches to disappear and pray for our family.  Thank you!