“My new doctor” (part I)

We decided to drive to Atlanta to see a new doctor.  My appointment was January 18, 2012.  My doctor is very young, and she has two small children.  The first thing she asked me was, “How can I help you?”  I replied, “Find out what is wrong with me!”  I had written down all my symptoms and the dates when everything occurred, and she typed them on her computer.  She asked a billion questions and did several simple tests to better ascertain my problem.  Her starting diagnosis was neuralgia…inflammation of the nerve.  She needed to get my tests results back from the other doctor. 

She did tell me MS (Multiple Sclerosis) was in the back of her mind.  I told her mine as well.  She did not think it was Lou Gehrig's disease.  She put me on a steroid to help the inflamed nerve and thought it would help me.  The actual first treatment of the nerve pain....not someone just giving me pain pills!  We set up a phone conversation for the following week.  I sent my family an email updating them but did not mention MS because they did not need to fret until then.

Since she mentioned MS, I immediately started researching it once again.  The term was familiar back in 2005 because there was the possibility of me having MS.  I noticed several symptoms I was having that we did not talk about at my appointment.  I was having balance issues in which I would occasionally have to put my arm up against a wall to keep me from falling over.  It could have been from the drugs, but since I have been on them for so long, I could not remember when the symptom first started.  I also have memory issues which is another symptom of MS.  The other week I needed my employee to cut some curling ribbon for me.  As I was telling her what to do, I pointed at the curling ribbon, but it took a few seconds for me to remember the word curling ribbon.

Mad as a tick!

All I want to do is find out what is wrong with me!  Why for eleven weeks I have had pain in my left arm.  I got my MRI results back today.  Bulging and degenerative discs and a narrowing of my spinal canal, but nothing that would give me pain in my arm.  No pinched nerve, no surgery needed.  I asked him if it could be my heart.  He said I was healthy, and the pain is not radiating down from my chest to my arm.  He did not know what was causing my pain.  He increased my pain medicine and changed it because it was not working.  Then basically the doctor left after he told me I could go to a pain management center.

He did not say, this is what we can do next….let’s check into this.  He packed his things and left.  His nurse said I could come back as needed.  I did not have time to rebuttal a debate as he was walking out because I had to be at work in ten minutes.  By the time I got to the parking lot, I was mad!  I guess I as a lay person am left to figure out what is wrong with me.  Paul works for a health insurance company, and we are going to talk to a doctor he knows.  I am so frustrated!  Tonight, I just cried.

We did talk to a doctor on the phone that Paul knew from work.  He at least cared enough to listen.  I told him my symptoms, and he said I needed to get a second opinion.  He is a heart doctor, and said I could come see him if I needed to.  He told me to enjoy my Christmas. 

What’ll ya have?

I went to the neurologist today.  The last time I was there, I was diagnosed with BFS (Benign Fasciculation Syndrome).  I thought I had ALS.  Today, I went to figure out why I had pain and burning in my arm and numbness in three of my fingertips.  Again, I thought I had a terminal illness.  If not ALS, maybe it was MS.

I dd not mention my thoughts and concerns to the doctor and prayed for him to have wisdom.  He told me pain, numbness, and burning are sensory things, and ALS is not.  He said after looking at my nerve test and evaluating me, I did not have ALS.  I am getting an MRI of my neck to see if we can find out what is wrong.

The relief of that really hit tonight.  I have thought on two different occasions I was going to die from a terminal illness.  Those are tough times.  Just mentally processing the feelings and emotions of thinking you are going to die from a terminal illness are extremely difficult.  Neither of my children knew either time what I was going through because I tried to hide it from them.

It can be burden for other people to know a close friend or loved one is going to die from a terminal illness.  For the last seven weeks, I have kept this from my family because of this reason.  It was hard, but it was something I thought I should do to relinquish the stress and pain from them.  I told Evelyn a few things, but only shared everything with Paul and one other friend.

I really did not ponder the results for hearing I did not have ALS until late this afternoon.  On the way to pick up my son from football, I was being silly and made a silly statement about what God was going to do with me.  Immediately I thought, “What’ll ya have?”  The Varsity is a restaurant that asks, “What’ll ya have?” when a customer walks up to the counter.

U  What’ll ya have with me Jesus?  U

Here we go again! (part II)

I do feel a weakness in my arms, especially when I am taking pictures and other mundane tasks.  But, I really am having issues with my balance being a little off, and my cognitive abilities have not been sharp.  I looked up the symptoms on the internet and saw they were also symptoms for MS (Multiple Sclerosis).

I can’t begin to tell you all the issues that went through my mind.  I wasn’t going to tell Paul yet, but I had to because I was approached by a business associate about an extremely large Christmas order for the shop.  I had to make a quick decision of whether or not I could physically do it, or whether the shop had the physical capability to do an order that large.   After we talked, I knew I could not do the whole order, but I can do part of it.  

Paul was real sweet.  His main concern was me and nothing else.  He doesn’t have an emotional attachment to the shop like I do.  Our lease is coming up at the beginning of February, so I would like a very quick diagnosis of the problem.  It is October 23, 2011 and our landlord will probably be approaching us in December….not a lot of time to find an answer.

I went to the Botanical Garden to get away and write this chapter.  I sat on a rock right on the edge of the river to “write down” my feelings on my computer.  That idea was quickly dismissed as two college girls sat on a rock right above where I was sitting to discuss college life.  So, those sad feelings I was going to write down did not come.   Instead I named my rock “lizard rock” as four lizards came to visit me.  When the girls left, a teen boy and his grandmother sat in the same spot.  Then the teen wandered around where I was sitting.  So, it is time to go and get my thoughts on paper another time!
 

Looking back on this day almost a year and a half later, I think I was blessed to not formulate these thoughts in my mind because they were not happy thoughts at all. I never sat down to write down my thoughts. These “interruptions” I feel were a blessing in disguise.

Here we go again! (part I)

I have not wanted to write this chapter, but know I need to.  About three weeks ago, I started getting a burning feeling in my left arm.  It lasted for about a week, followed by tingling into my first three fingers for about a week. The third week it turned to pain!    The pain at times was pretty intense at the left side of my breast and under my arm near my bicep.  I put off calling my general practitioner, but knew I needed to go to the doctor.  I told my doctor the symptoms and did not voice my opinions, concerns, or told her what I thought.

I asked for the Lord to give her wisdom.  She wanted for me to get a nerve conductivity test to see whether the issues were stemming from my shoulder or my wrist.  I knew it was stemming from my shoulder and neck area.  She said it sounded like a pinched nerve.  She told me there is a nerve that goes to those three fingers.  Today, the tingling went down to my right thumb, and for a few days my three finger tips have started feeling numb.

Well, the reason I did not want to write this chapter is it reminds me of having thoughts of ALS again.  I knew Mom mentioned about her fingers tingling, but she never wanted to talk about it so, I did not know her other symptoms.  I remember when I went to the neurologist the first time I was having muscle twitches…it turned out to be Benign Fasciculation Syndrome (BFS). 

****Up-to-date note:  Happy Heavenly birthday # 9 Mom!! 

Ministering to PALS and CALS (part II)

Some ALS patients chose to be placed on a ventilator to help them breathe. Their lives are extended past the average 3- 5 years. Though doing so may be costly and burdensome on some families. One lady has been on a ventilator for twelve years and another man for fourteen years. They both have the best attitudes and are leading a good life despite of all the negative aspects of the disease.

Some of the people I am following via Twitter, facebook and on their blogs use special devices to help them communicate their needs. One lady still has her voice and uses voice activated software to speak to the computer, and it types out the words. A lot of PALS can no longer use their hands because they are paralyzed. One man pecks with his middle fingers on both hands. Several PALS use a computer that tracks their eye gaze which in turn types out what they want written.

I have also joined the ALS Forum in which I post two chapters of this book each week. I wanted to be able to help people now. This is what I thought I should do. The threads I post on go under the Past Caregivers (CALS) section. CALS (caregivers of PALS)  look under this section for support and often have a lot of questions because of the PAL they are taking care of. I get excited when a CAL replies a nice comment to my thread. It is nice to “see” I may be helping someone now instead of waiting till the book was published!

Ministering to PALS and CALS (part I)

I have really been trying in the last few weeks to reach out to PALS (Person(s) with ALS).  I really believe the Lord has given me a passion for these people, and I have been reaching out to them and encouraging them by writing on their blogs.  Some are newly diagnosed and are bitter.  It has been very hard on them not being able to do all the things they used to do.  Some have written that they will never see their child get married and have kids, while others are sad about the burden they are placing on their loved ones.  I read a lady’s blog today in which she was asked to describe ALS.  She wrote that it was a continuous series of losses.  She mentioned losing one thing after another, from loss of strength, to loss of independence. 

It is tough reading their blogs about their feelings and emotions they share.  I know their fate is death, and the road ahead is very difficult.  ALS is a horrific disease and PALS have to suffer so much.  I desire for each of them to have a personal relationship with Jesus.  I wouldn’t want them to suffer while here on earth then suffer in hell because they did not know Christ personally. 

I was invited to join several facebook ALS groups.  Most are there to support one another.  Some are the PALS themselves, while others are family members.  Some people have joined the group because someone in their family has died from ALS, and they are trying to bring awareness to the disease, while others are raising money to find a cure.

These people have grown on me.  I view them as family, and we have never met.  We have a bond, a connection that we share.  I guess it kind of reminds me of the Christian body of believers.  One PAL I am following is Tom.  Tom used to serve as a chaplain for Hospice.  He had to resign because he too found out he had ALS.

I’m very proud of you!

I saw the movie “The Help” tonight.  It was a very good movie.  The one part that really touched me and made me cry was when Skeeter’s mom said to Skeeter, “I’m very proud of you!”  Her mom then kissed Skitter on the forehead.  The reason that part really made me cry was it reminded me of what Mom would have said to me about my book.