Thanksgiving

Once again I have much to be thankful for. Although both moles were severely atypical and progressing to cancer, but were removed and had clear margins.  So I am melanoma free!  I will just have to keep an eye on my skin and go in regularly for skin checks. 

Our oldest son is home for the week of Thanksgiving.  What a wonderful thing to have our family together!  He is so happy and content in Pennsylvania, though, which gives us a great deal of contentment and peace about him being there. 

November and snowing

In Situ. . . .

These words are such a blessing to hear after a diagnosis of melanoma.

Yep, another diagnosis.  I had a mole that had bubbled up a bit and then changed colors.  As a side note when visiting my family practitioner about another issue, I remembered to ask him about it.  It didn't look alarming but since it had changed he decided to remove it.

He called a few days later to tell me that it was melanoma and that it was outside of the borders of what had been removed.  More likely in situ but until the rest was removed we wouldn't know. 

A dermatologist removed an area on my upper left arm that was 5 cm long and about 3 cm wide.  It was deep enough that my arm will remain sunken in there but at this point the stitches are out and it is just sore. 

She removed two more moles on Monday.  Thursday the nurse called saying that one was severely atypical but okay--I just have to watch the site closely for any future discoloration.  However, the other was more suspicious and sent to another lab to be removed.  So once again we are praying that if it is Melanoma that it is in situ.  Good words when it is cancer, especially melanoma which is the most aggressive and deadly of the skin cancers.

We know that God has a plan for our lives.  My health, although greatly improved, is not impressive.  I struggle with weakness, my daily head is improved but still there, and regularly I still have strong headache days. Our youngest child has many challenges and that gives us many challenges.  Exhausting. 

Proverbs 3: 5-6
Trust in the Lord with all your heart,
    and do not lean on your own understanding.
 In all your ways acknowledge him,
    and he will make straight your paths.

New days coming

We are soon seeing a transition in our lives.  Tanner leaves for Grove City College pretty soon and we are all having emotions about the change that will bring to our family.  We are happy for him, though.  He is a little nervous but very excited about having a fresh start in a new place with new people.  I really believe that it will be a blessing for him.

Life has honestly been hard.  It is hard sometimes to understand the trials the Lord puts before us, particularly when new trials continue to overlap old.  I am feeling tired and worn down.  I'm not exactly sure what normal is, and perhaps no one knows what it is, but we have been so far from that nebulous state that it is hard to imagine.

My head has been relatively stable and at a place that is good for me, but I think due to stress and too many things happening, I've been sliding into a bad headache about once a week again for the last while.  A little frustrating.

Please continue to pray for our family!

A warm Wednesday evening

I haven't written for a while and that is good news. 

My eye continues to heal.  A week or two ago it started becoming a little more irritated and red so I finally went in today to check it out.  Nothing serious thankfully.  I have to start the prescription drops again for a week and see what happens.  I thought that maybe a stitch was starting to protrude again because there is a bump on my eye.  However, it is just how my eye is healing.  If you think about how a scar sometimes heals on your arm, for example, it will sometimes have rough spots that don't lay down as well.  That is happening on my eye and it may have gotten a little bit of dust in the protrusion.  So I need to try to stay away from dust and just keep on going.

I am so very thankful that my headaches have been doing so well, though!  They haven't flared so much after really busy days which is amazing!  My body can't keep up, though, so I still get sick feeling and wiped out.  However, I can see that although I am not nearly as strong as I should be, I have definitely made progress.  My wheelchair hasn't been out for me in about eight months.  That is good news!

My family continues to make progress.  Kylie is having more problems with reflux so she is having testing done for that.  She had a procedure done today to scope her esophagus, etc., and is struggling with nausea now.  Tanner eagerly awaits going to Pennsylvania for college.  The younger two are growing older and that is interesting at times!  It feels like we have four teenagers in the house now although that is not technically chronologically true.  :)

Blessings to all that continue to read this blog!  I've had several people comment to me in person about not writing so I thought today would be a good time for a little update.

Tuesday

Time continues to speed by.  I went back for a post-op appointment on Monday morning.  My eye had been quite irritated and red yet so I suspected that a stitch may need to be taken care of.  Sure enough, there was one stitch lower in my eye and another up in the top of my eye that both needed to be snipped and pulled out.  It sounds awful to have stitches in your eyeball snipped and pulled out!  Since it is numb I didn't feel so much with the higher stitch but the one in my lower eye did hurt a little more.  Really not so bad, though, and it feels so much better having them out!

The best news is that my head still seems to be doing pretty well!  Yes, I still have a headache, but it is now more of a minor irritation most of the time rather than in the forefront.  What a blessing!  The ophthalmologist tested my eyes and he was quite pleased that my headaches were doing so much better and that the correction he was seeking was right on. He is hoping that I will not need to wear the lenses, too!  That would just be icing on the cake!  :)

It sounds like there have only been a small handful that have had this surgery for this type of correction.  Each of the us have had very successful results.  He said that he and a few other doctors are working on this together and hope to take in nationally!  Amazing that this type of cutting edge treatment is originating right in Sioux Falls!

So now I pray that the Lord doesn't have any more unique or otherwise weird things to reveal about my body malfunctioning.  I seem to be one of the very unique creatures of God that has about the most unlikely things happen.  So praying that these trials may subside for a very long time!

Wednesday

I woke up Tuesday morning and realized right away that there was a problem.  My left eye that had the surgery was swelled half shut and very red.  My eyelid was swelled and it looked wrong.  We assumed that I had an infection in my eye and were instructed to call right away with those types of symptoms.

Thankfully the doctor didn't think it is infected.  Two stitches that are helping to hold the white tissue in place were poking out a bit.  He said that this causes a great deal of irritation on the eye and eye lid.  So after numbing my eye he attempted to pull them out.  They didn't come out so he pulled them a bit and and clipped them off.  Since my eye was numb I didn't feel much and the light was so bright in that eye that I couldn't see which is best.  :)  When the numbing solution wore off I could tell right away that it was much less abrasive to blink.

The surgery is considered successful.  I am slightly cross-eyed which they planned.  The muscle will gradually tighten so they prefer that it be a little over corrected to start.  I can tell the muscle in that eye is very weak because it is harder to stay focused in that eye and it is harder to look around staying focused.  That will come with time.

My head has been feeling considerably better!  The primary goal so far seems to be in sight.  If I do to much with my eyes I get a little more headache-y but I think that would be normal for anyone.  So we continue on!

Easter Eve

A few days have passed since the surgery.  Today is the first day that I can say my eye is feeling a little better.  I've only been using ibuprofen for the irritation but up until today had been taking it every six hours.  Today I didn't take any until this evening.  I'm very thankful that I haven't need anything stronger!

My eye is still pretty irritated though.  I am struggling with seeing well.  With my left eye shut I can see clearly but with both eyes I am still seeing double, especially things at a distance.  I am noticing that my vision is improving each day.  It is rather tiring, though.  I have been exhausted by mid-afternoon.

Tomorrow is a special day to celebrate the risen Savior, the King of Kings, and the Lord of Lords.  Have a blessed Easter!

Twenty-four hours later

The surgery is done.  I was under general anesthesia and as usual, they had challenges with getting an iv in.  Thankfully the anesthesiologist came in and he was able to numb an area in my wrist and then got it in without problems.

For a surgery, it was pretty easy.  It sounds awful to have the surgeon cut into my eye to get to the muscle behind it.  Once I was used to the idea, though, it wasn't so bad.  My eye is very red and blood shot and bleeds off and on.  Yesterday it was too swelled up and full of matter to really open much.  Today I can open it but it looks yucky. 

All that being said, this is probably going to be the easiest surgery to recover from it seems.  I just take ibuprofen sometimes because my eye is uncomfortable.  Because there are stitches in my eye it feels like it is full of sand. The other challenge is that I am seeing double when both eyes are open and after a while that wears on me.  The doctor said that it would take 2-4 weeks for that to clear up but I would imagine that each day will get better.

At this point I am not wearing the prism glasses.  Both doctors have said that I most likely will need to continue wearing them but the level of prism will not be nearly as strong as they were.  If I understood things correctly, the ophthalmologist suggested that it is possible that this muscle will continue to strengthen and in about 10 years I may need to repeat the surgery.  I hope not!  But if I can have 10 years of much improved headaches, it will be worth it.

To answer the question of the day--my head is feeling quite a bit better today.  Way to early to tell if this is due to the surgery.  Part of it may be that my left eye is shut about half the time anyway!

Sunday evening. . . the night before. . .

Tomorrow is surgery number 15 in the string of surgeries for my headaches.  Tonight as I have been contemplating the surgery I have questioned again whether this is the right decision.  Why so many surgeries?  Am I to quick to just jump into another surgery?  But yet I have tested the theory at home by covering one eye and then the other for periods of time.  It truly does help a lot.  Do I think that my headaches will be gone?  No.  My prayer is that the Lord is providing a way to decrease the intensity of the headaches although I trust that He could remove the headaches.

My head has steadily been stronger although some days worse than others.  This last week has been particularly challenging.  Kyle finally gave me a Toradol shot Wednesday afternoon and I felt better Thursday.  Then I had him give me one Friday morning--the last day I could have one--in hopes that I would feel okay Saturday.  I had woken up Friday morning with the headache pretty strong again.  Thankfully the strategy worked and I felt pretty good on Saturday.  That was very important to me because my sweet niece, Bethany had a shower in the morning and my sister-in-law and I were putting on a second shower in the afternoon.  Feeling well was an answer to prayer!

So tomorrow I will have another surgery.  It should be simple and easy to recover from.  I so hope and pray that the Lord will allow me to have more relief from these headaches!

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/