Tuesday, April 26, 2011

God is Good All the Time!

I met with Dr. Robertson last week.  He said I had some signs of TOS but not a clear cut case.  He is very concerned about my right arm weakness.  I told him I would be worried if I were a clear cut case - as I have never had anything medically normal happen to me.

He has referred me to Dr. Urschel at Baylor Dallas, a thoracic surgeon.  This guy is an expert on TOS.  I called to set up an appointment that day.  I had to leave a message and they called me back on Good Friday.  Dr. Urschel is an expert in a rare condition.  Bad news - he is not on my insurance.  This concerned us very much.   Scott and I began to pray about this.  Scott and I talked about it and decided to get his opinion and then if I need surgery, I would find another surgeon.  I was not totally at ease with this decision.  Not the part about Dr. Urschel, but getting another doctor to do the surgery if I need it.  But I also do not want to put my family in financial difficulty. 

Before I can schedule an appointment with Dr.  Urschel,  I have to see Dr. Chase for two different tests.  One is an EMG - let me tell you I am not liking the idea of having to do that again.  Last time I only did it on the right side, this time I have to have it on both sides - YUCK!!!!!  I will see him on May 3rd.  I will then see Dr. Urschel on May 12. 

Yesterday, I was planning to ask Dr. Modlinski to begin looking for another thoracic surgeon - one that would be on our insurance.  I was at physical therapy and told Brian that I was experiencing extreme muscle weakness in my right hand.  He had me do another test that measures the strength of each hand.  My left hand measured 60 pounds of pressure and my right measured 15.    This is not a good.   My hand seems to be getting weaker.

I have always felt God's hand leading me to what is wrong.  I have always felt at peace in everything.  Dr. Modlinski came to talk to me towards the end of my pt session yesterday.  He agrees that I need to see Dr. Urschel.   He also told me that he would write a letter to my insurance company stating that I needed to see this doctor and he would also get Dr. Robertson to do the same.  This would allow us to see Dr. Urschel with in-network benefits.  My peace has returned.  Thank you Lord!

My God is so wonderful!!!!!!!!! God led me to the expert.  God is taking care of the financial end of things.  God is giving complete peace through it all.  God is good all the time, all the time God is good!

Sunday, April 17, 2011

Wonderful day!

Every now in then I get a day with little to no pain.  I enjoy these days so much.  Yesterday was one of them.  When I have these days I am careful to not over do it.  I was able to do a little house work and go to Daniel's soccer game. 

I wanted to do something fun, get out for a while,  and move around.  I talked Scott into taking Daniel to Fort Worth's Main Street Art Festival (Jon did not want to go.)  Daniel has been starting a new interest in art over the past few months - so I thought he would enjoy it.  That was an understatement.  The artists were so kind answering his questions.  I will have to admit -  I was very nervous at times.  Daniel is not known for his coodination and when he is in obsessive interest  mode - he is not aware of his body in space.    We had to keep reminding Daniel of the cost of some of the items - I was scared he might break something. 

I enjoyed walking around and looking at all the art.  However, I loved seeing the Art show through Daniel's eyes.  Thank you God for giving me this day to enjoy the beautiful weather, a wonderful husband, and my precious Daniel.

Friday, April 15, 2011

Power of a Giggle

Wednesday was a VERY rough day for me.  I was in a great deal of pain all day.  I think the reality of what I am going through finally started to kick in.  In addition - I am tired of hurting.  All this caused me to have a very hard day.  I cried off and on all day.  The kiddos at school think I have very bad allergies and I just let them think that.  I tried all day to just focus on them, but it was so hard - I was hurting and that was all I could focus on.  Then I went to therapy - pain meds either did not work as well or I started off in more pain - but it was a very painful session. 

Thursday was better.  If I kept my arm in one position it did not hurt as bad.  I looked funny - kinda like I as saying the pledge of alligiance all day - but I did not care - I was not hurting as bad.  Then at 2:20 it started.  My kiddos had worked hard all day and got everything done I had planned so we had time to go to free choice stations (new name for centers). 

Three boys were playing with magnets when B. got tickled about something.  He started giggling and could not stop.  His smile was so bright that it was lighting up the whole room.  Then the other two started giggling.  It was the most wonderful sight.  Three boys without a care in the world just giggling.  I started to smile and just watch them for a while.  Their giggles were so contagious.  Then I found myself starting to giggle.  I began to feel something I had not felt in a while - JOY!  I have been in pain for so long that I lost my smile, laughter, giggles, and JOY! 

It happened so gradually that I did not notice.  That is often how satan works - you don't change over night - it is a gradual process.  I was so focused on myself and my pain that I could not think of others.  I felt as if I were going into survival mode instead of living the life I have been Called to live.  I was slowly allowing satan a foothold into my life.  God, however, can change you in a moment - a 5 year old boy giggling moment.  He reminded me in  that moment that He is in control of everything and that He will hold my hand in the painful times.  If I will quit focusing on myself, live the life He has called me to and allow Him - He will help me help me see JOY in my struggles.

Tuesday, April 12, 2011

Iphone fun

This is a test blog from my phone.

I just sent the above from my Iphone.  I just send it as a text message and it posts to my blog.  This is so cool!  I can now blog from my phone.  I also figured out you can then edit it when you get to the computer.  Too fun!

No Torture At PT - Praise God!

PRAISE GOD!!!!!!!!!!!!  PT was not torture yesterday.  I am so thankful for the pain medication Dr. Modlinski gave me for therapy.  I still felt some pain, but it was SOOOOOOO much easier.  Brian was able to do what he needed to without me fighting him.  I was also not so emotionally drained either.  I am feeling some muscle soreness today, which is to be expected.  Thank you God!

Set up my appointment with Dr. Robertson this morning.  I will see him on April 21.  I am so thankful  for only having to wait 1.5 weeks to get in.  Specialist often take much longer for a new patient appt. 

I did not share my story for a long time.  I really thought I was dealing with whiplash symptoms from the wreck - I did not want to seem like a wimp.  I was trying to go on with my life, in pain, without complaining (except to my family and a few teacher friends).  Now I have found out I have something unique (I like that word better than rare).  There is very little out there from patients who are going through this.  I completely understand. There are not many of us out there. TOS wears you out.  Therapy hurts and makes you even more tired.  Pain meds help with the pain, but mess with your sleeping patterns (that is why I was up at 3 a.m. this morning).  Using a mouse or finger pad makes weak muscles very tired if you use them too much.  Typing too long makes the nerve pain worse.  God is teaching me that I can share for His Glory what is going on.  I may have to do it a little at a time, but I can do it.  It all comes back to slowing down, and this time I am listening to Him.  It is like this post today, I have typed for a few minutes - now I will rest, drink a cup of coffee, and spend some quiet time with the Lord.  Nothing better than that!  Then God will help me through whatever today holds. 

Blessing to you all!

Sunday, April 10, 2011

lessons from Learning Left

With TOS, there are many times, I have limited use of my right arm do to weakness or nerve pain.  As a result I am leaning to use my left hand more.  If we allow him to, God uses all of our life to help and bless others, teach us new things, open our eyes to what is there and many more things. Right now he is teaching me to slow down, ask for help and to make adjustments.

When I was teaching my boys how to brush their teeth, I would often get frustrated at their awkwardness of doing it. Lately I have had to learn to use my left hand more.  Things like brushing your teeth, carrying a coffee cup, eating, drinking from a cup, grabbing for anything, writing on the white board at school, signing your name, filling our paperwork are no longer brainless activities.  I have to slow down and think about what I am doing.  Do you know how hard it is to brush your teeth with your left hand or  use a fork or spoon with your left hand?  Let me tell you - VERY HARD and many times frustrating. 

I have good moments and bad moments with my right arm.  I get tired very easily.  I am leaning to say no.  I never thought much about that word.  I am a pleaser.  I want to help everyone.  As a result many times in the past I have overextended myself.  I was helping others so I never really thought about who I was hurting - my family.  I was not there to help out at home.  That changed about a few years ago.  During the school year, while I am teaching, I have learned to say no.  There are some things I do, but many time I have to say no or just do not volunteer.  I am just so tired.  Looking back now I can see that may have the beginning stages of my TOS. I was having the my primary doctor check for everything that could make you tired - everything but my blood sugar (which I have had trouble with since I was 16) was normal.  God was beginning to prepare me then for what I am going through now.  It was not clear then, but it is crystal clear now.  I have to slow down.  As a result, I have begun to see things more clearly. 

Asking for help has been the hardest.  I am very independent and can do it by myself.  God has been trying to work with me on this one and I knew it but was still  not letting go of some stuff.  Little things like setting up a room for summer spectacular at church.  I would do it all myself and never ask for help.  I did not know then that I was actually not allowing other people to server, bless and honor God and that was a selfish act.

Things have gotten a little more extreme at home.  There are many things I can no longer do or only do to a small extent.  Little things I never thought of before, I have to ask for help for safety reasons - especially in the kitchen.  If I have pasta on the stove that needs to be put in the strainer - I have to ask for help.  This is one thing I have to have my right arm to do.  I am dropping so much right now that I could easily drop it and burn myself.  Learning to brown meat and stir with my left hand has been difficult.  However, if I slow down, I can do it.  God is now telling me to teach my boys to cook so that they can be a blessing to their wives. Never thought of it that way.

Then there is laundry - the never ending battle in all families.  Scott has always washed and dried, I have folded and sorted, the family put up their own stuff.  Many times I can not pick up the basket to fold.  I have to ask for help.  I can put stuff on hangers, but I can not lift it into the closet - I have to ask for help.  It has been a very humbling experience. 

Making adjustments is also difficult.  I am a planner and I like things to go according to our plan/ schedule.  Having a child with high functioning autism has not helped me in that one.  However, one thing we must teach him is something I need to learn myself - how to adjust.  Having physical therapy every Monday and Wednesday has forced this on me. I have to leave school by 3:30 on those days to get to therapy by 4:00.  The world did not end because I left some stuff unfinished at work.  I can work on it tomorrow.  I have to adjust and be more organized - not my strong suite.  I have learned to make to lists, ask for help from parents on some stuff they can do and make sure my calendar is always up to date.  My friend Shelley posted on her facebook account about an app called Cozi.  It is a family organizer.  It has been a lifesaver in keeping things organized between home and school.  At home on therapy days I am almost useless when I get home.  Scott has been a life saver at home - on those day he has to do everything.  Adjustment - I can put dinner in the crock pot before I leave for work.  That way it is ready when I get home and we can just eat.  The other adjustment I have had to do is rest more - not sleep, just sit down and rest.  If I do not the pain increases.  I can use those rest times to talk with my family or just watch a tv show together or spend quality time with the Lord. 

Slow down, ask for help and to make adjustments - these are important lessons for me (and many others) to learn.  I am so thankful that God is allowing me to see my molding while it is happening. Molding can hurt, but it can also bless many people - if we allow it to.

Saturday, April 9, 2011

Thoracic Outlet Syndrome (TOS)

I am not the worrying one in my family. I say God has gotten us through a bunch of stuff and he will help up through this one. I was a little nervous about my dr. appt Friday. I had an EMG done Thursday and they may have found 2 more problems with my neck and right arm. God will get us through this, I just want to know what it is he is getting us through.

Thanks to all the prayers of friends,  I was at peace when I met with my dr. yesterday.  We found out that I have thoracic outlet syndrome (TOS). I have compression of the nerves in my thoracic outlet (between the clavicle bone and 1st rib) My EMG showed significant nerve loss in that area. It is what is causing all my neck pain, nerve pain and loss on strength in my arm and hand.

I will have physical therapy for the next 5 weeks trying to relax my pectoralis minor muscle. I started this week and it was the worst pain I have ever had. The dr. gave me a pain medicine to take right before therapy so that Brian (my PT) can do what he needs to do. If we do not see significant improvement in the next 5 weeks I will have to have surgery which will involve cutting pectoralis minor muscle then reattaching it to another bone and taking out a rib.

Dr. Modlinski has referred me to  Dr. William (Bill) Roberson at the UT Southwest Medical Center who specializes in TOS. I should see him in the next few weeks.

Surgery does not sound fun so I am asking that all my friends to please pray PT works.

God is so great!!!!!!!!!!!!!!  I know that God is in control.  He has always guided my path and allowed me to help others in whatever trial I have been through.  I pray I can honor Him in my steps.


It All Began With a Sneeze

Why am I always surprised when I see God's hand in my life?  He is always there, but sometime it is SOOO obvious. 

My latest journey began a long time ago, but no one knows when.  However, 8 weeks ago the journey became very obvious due to a sneeze.  Funny?! Strange?!  Weird?!  GOD!!!!!!!! 

I was driving to work on 820 near Rufe Snow during morning rush hour!  Anyone who knows that area would cringe at this location.  It was stop and go!  Then I sneezed - a big sneeze!  My foot slipped of the break and hit the gas.  I hit the car in front of me.  After insurance was exchanged, I drove on to work.  It was a very minor wreck, only a few scratches on my car and they could have been there before.  As the morning progressed, my neck started hurting.  I ended up going home and to the doctor.  She was concerned enough about my pain she ordered a MRI.  She was thinking I might have broke my neck.  MRI was clear, so rest, pain meds and muscle relaxer were prescribed. 

A  week later I was still in A LOT of pain.  I decided to call the orthopedic surgeon, Dr. Modlinski,  who helped me with my knee.  He looked at my MRI and did not see anything massive so he ordered pt for pain management. 

I went to pt for about 4 weeks and went back to see Dr. Modlinski.  I was still in a lot of pain, so he ordered an EMG.  This is a study of the nerves.  It took a few weeks to get in so I continued pt. 

God decided it was time for everyone to see what was wrong with me. 

On Monday March 28, Dr. Modlinski was sitting in the PT room talking to Brian (my pt).  Brian was doing deep tissue massage of my neck at the time.  All of a sudden if felt like I had lost all of the blood flow in my right arm.  I immediately told  Brian.  Both Brian and Dr. Modlinski's eyes got really big.  They said something about Thoracic outlet syndrome and they decided to have Brian do some tests to me on Wednesday.  On Wednesday I went in and Brian did all these tests and said I had some positive signs of TOS and some that showed negative.  He decided to add two new stretches to my home therapy and showed me how to do them.  The first one no big deal.  The second one, you have to roll up a bath towel and lay down on it with the towel down the center of your spine.  Brian got really quiet which is not like him at all.  He checked the placement of the towel.  Then told me to be still and that he was getting Dr. Modlinski.  When you do this stretch your shoulders are supposed to be parallel.  My right shoulder was about 1.5 inches higher than my left.  If felt so tight.  Dr. Modliski started taking pictures, pushing down on my shoulders and poking a spot that hurt!

Life started changing right then.  The following Monday and Wednesday, therapy changed from pain management to pain infliction - no really it was therapy that was to try to loosen my pectoralis minor  muscle.  The pain involved was so extreme.  I have a high pain tolerance, but this was toooooooooo much for me.  Then I had to go back on Wednesday and do it again. 

Thursday was my EMG.  Luckily they only did it on my right arm.  I will have to wait until Friday afternoon to get the results.  He said words like atrophy and nerve damage and slow nerve travel.  All this kinda made me nervous. 

Sorry this is so long.  I wanted to make sure I captured all my thoughts of what happened.  My next post will be about what we find out from Dr. Modlinski.

God is so wonderful. He is there- always.  He led me to the right doctor last summer when I had knee trouble - so I already was at ease with the doctor and physical therapist. I sneezed and had a very minor wreck.   My physical therapist was there when I lost use of my right arm for about a week.  He saw me Thursday (fine) and then on Monday (loss of function).   Dr. Modlinski was there when I lost the blood flow - sitting right next to me.  Dr. Modlinski is willing to think outside the box when his first diagnosis does not seem to fit.  All through this process, it has been so obvious and fun to watch God's hand leading everyone.