Full Circle

I'm starting to believe that life, in itself, is inevitably a whirlwind.  Every time I think things might be leveling out and I can actually relax, something always comes up.  I am learning, due to listening (wink, wink imagine what can happen when you pay attention), that my life is not that unusual.  The details are different, the whirlwind is the same.

I haven't been feeling up to par lately.  I ignored it and kept pushing on because it is the end of summer and school is starting.  It is a stressful, crazy, busy time for all of us, not just parents.  I assumed that once the routine was in place and things in the environment calmed down, my body would rest and I would recoup.  Unfortunately, that hasn't happened.

Last Thursday I had an unusual episode.  I have not had a grand mal seizure since June 2010.  I don't remember the last petit mal or partial complex seizure I have had.  I was so used to having them daily, then they slowed and were more sporadic until it got to the point that I didn't even note them.  Thursday I was feeling very tired and just not well.  There was a bright light, then shooting pain into my eyes that radiated into my head.  A confusion spell followed that lasted a minute or so.  I never lost consciousness.  When I was able to focus again, it was like I was looking through a tunnel.  My peripheral vision was still filled with that bright light and it was incredibly painful to move my eyes.  The headache only worsened and never subsided. 

That day I had already obligated myself to volunteer at my son's school.  I went ahead and went about my day in pain and exhausted the entire time.  My ultimate thought is always that all I need is a good night's rest and tomorrow will be better.  That got me through the day.  A week later I am still in pain. 

The following Monday, my husband and I were scheduled to travel to see two of my specialists, the endocrinologist (establishing with a new one yet again due to doctors leaving our small town) and the rheumatologist.  Five o'clock that morning we get a call from my mother in law.  My husband's aunt, who happens to have Downs Syndrome and Rheumatoid Arthritis, was being rushed to the emergency room.  She had also not been feeling well since Thursday.  We thought we got a bug together.  She was not able to breath.  She was admitted with pneumonia within 2 hours.  We could not reschedule or cancel my appointments on such short notice, but we were worried. 

We got our son ready for school, followed his morning routine, packed and headed straight to the hospital.  His aunt is in her late 40s.  This is a huge accomplishment for someone with her history.  Most recently she had a bone marrow biopsy due to fear of leukemia (that came back normal).  So, you could imagine, it is frightening to see her in the hospital.  We tied up loose ends and headed up to see my doctors.

I was super nervous about establishing with my new endo.  I was diagnosed (with the Type I Diabetes) by this wonderful doctor who left the hospital I was established at months after.  I was then with another great endo for the last 7 years.  He left that hospital system as well.  I established with a local endo, but he left the practice he had only a year after.  I wanted to follow him where ever he transferred, but at the time he left he had no clear idea of where he was going.  My rheumatologist actually referred me to my new endo and when I heard his name I almost dropped.  It was the original doctor who had diagnosed me.  I was stoked because I knew he was good, I knew he knew me, and I knew his style.

Still, I get nervous to walk into a new doctor of any specialty and lay out my history.  Will they believe me or look at me like a hypochondriac?  Will they agree with the treatment the other doctors have already established?  Will he change something I am not comfortable with or find something I didn't know about?  It's like a blind date from hell.

As we were registering for that endo appointment early Tuesday morning, with our aunt on our minds, we see the endo I had locally walk by.  He got a job at the facility where I had been referred.  Ironic and awesome.  He knows my case.  Now, I know where he is if I am not comfortable with this new doctor or if the doctor has questions, they can exchange notes.  So, not only was it a full circle moment to be back with the endo I had first met and meant so much to me, but I knew someone who dealt with my current situation was there as well.  I felt like I was in a nice little safety net.

Now, to get to the nitty gritty I'd like to forget.  I had many concerns that have been haunting me for years.  I occasionally bring them up to different specialists, but they always get pushed under the rug, ignored, or overlooked with more serious concerns.  At this point, these things are progressing and becoming more of a problem in my daily life.  Since the beginning of my diabetes I have dealt with intermittent numbness, tingling, and burning pain in my extremities.  For a while it was talked away as "feeling the symptoms of higher blood sugars", then it was thought to be caused by the malabsorption and we were told it would resolve.  At this point, there is definitely no clear connection to blood sugars as my A1C is 6.1% (which is AWESOME).  I reported this to the new/old endo.

He agreed it was not connected to "symptoms of highs".  He was, of course, concerned about my nutrition due to the malabsorption and bucket of digestive problems.  He wanted to test all of those, but asked about my neurology treatment.  I have seizures and am followed by an neurologist, but I have never met a neurologist that pays attention to anything but the seizures.  Another concern of the endo was this episode that happened the previous Thursday, now 3 days back, and the pain had not subsided.....in fact it was getting worse.  He recommendation was to test the nutrients along with many other things through blood tests, but he also wanted me to contact my neurologist.  The endo wanted the episode to be tended to as well as an EMG (electromyography) along with a nerve conduction study.  These tests determine if and where there is possible nerve damage.  Another thought was that a past grand mal seizure could have caused whiplash (which has happened with a few seizures) and a disc may be out of place.  Any way you look at it, he wanted the neurologist to look at the WHOLE picture not just the seizures.  He actually is researching to find a neurologist we think can handle the totality of my situation.

Then, we move onto rheumatology.  He thoughts we right in line with my endo.  That in itself is like heaven.  Rarely do doctors agree.  I never discuss doctors opinions among doctors to protect egos.  I take in all the info from everyone I see, use what I think is useful, and toss what I am not comfortable with.  For two doctors to have almost identical ideas, thoughts, and recommendations is remarkable.  Both doctors are worried about adrenal insufficiency (Addison's disease) and malabsorption.  Blood tests were done, and I am glad to report no new findings at this time.  Also notable is that my diabetes as well as lupus are as stable as we can get right now.  Talk about a slam dunk!

Throughout all of this, we were corresponding with relatives down home.  There was a concern that our aunt had congestive heart failure and she seemed to be getting worse not better.  We left those appointments emotional wrecks.  Glad to have attentive doctors who are going to be so thorough.  Glad to have some bulldogs on my case to help me.  Them along with my primary and my immunologist are really taking this bull by the horns.  But....always a but......there are these serious concerns.  And our aunt is declining. 

On our way home I contacted my current neurologist to report my "episode".  I won't even bother you with the mess it was to report it and get it handled and treated.  Let's just say that was w whole other level of unnecessary stress.  The neurologist put me on a round a steroids.  The explanation I was given was it was most likely a petit mal seizure that rebounded with a migraine.  Inflammation in the vessels of the brain needed to be reduced, and therefore the steroids are necessary.  Another ironic occurrence because my endo had just warned me that continued steroid treatments may speed up the adrenal insufficiency.  He stressed to us that steroid treatments be used minimally to treat inflammation and contact him to notify him if I am in need of steroid treatment.  So, a few short hours after walking out of his office, I was calling to report steroid use.  For those of you who do not know, steroids raise blood sugars and it can be very serious in diabetics.  My comorbidities lead to a very meticulous juggle act.  All of this was dealt with on the road on our way home.

We got home Tuesday evening and rushed to see our aunt.  I am happy to report there was no congestive heart failure detected, but unfortunately the pneumonia is not clearing.  There is talk today about transferring her into ICU.  That side of the family just lost an uncle a few short years ago.  This is a big scare.  This aunt is the baby of the family.  She is also the heart and the smile of us all, such an inspiration and light in our lives.  We will leave this in God's hands.  She deserves His best.

We are back around to Thursday again.  I am on my second day of my steroid treatment.  I am advised to be extremely careful with activity and exposure because in my current state I am easily susceptible to infection or complications.  How do I do that at a time like this?!  I volunteered again today at my son's school.  This will be a weekly thing.  I am staying away from the hospital room, but trying my best to help out the family members who are there by dealing with the small things that need to be dealt with outside of the hospital.  I am trying to keep their stress levels as low as possible so that our aunt can get the attention she needs and so that everyone can be as healthy as possible to get her through this tough time.

At the school, I was talking with the cafeteria woman and she talked about her family.  Apparently, she had a scare with a nephew yesterday.  She was tired and stressed from dealing with that.  As she vented about it, we got into the history of our families.  After talking to a couple close friends yesterday, a few family members, as well as this woman.......it just started to really sink in.....we all have tragedies.  We all have scares.  We all have fears.  We all have too many responsibilities.  None of us have enough time to get done what we want to get done.  Another one of those, "I wish the world would stop turning long enough for me to catch up....." kinda things.

Usually, with all this going on around me, especially with how I currently feel physically, I would be in a terrible depression.  Self pity would have taken over.  That would only perpetuate my bad physical state.  Maybe it is God's hands carrying me.  Maybe it is a coping mechanism.  I really don't know.  I have this strange sense of calm.  I am scared about my unknowns.  I am scared and saddened for our aunt's current state.  But I am waking up everyday and going about my business.  All I can do right now is do what I NEED to do.  I will do my best.  I will let the professionals handle the worries of the health for both myself and our aunt.  I will work through my obligations and responsibilities one by one.  It will get done in due time.

Then, I see Robin Roberts farewell for her leave from Good Morning America.  I have an uncle in the hospital right now going through a very similar health issue.  We have been watching him go through it for several years now.  His immediate family has been through so much.  And watching the GMA family and Robin Roberts family was so heart breaking and heartwarming in the same breath.  I just breathe in and breathe out.  I thank God for the gifts we have around us.  I don't feel angry or sad about our struggles.  I realize everyone has struggle and turmoil in their life.  It may not always be in the form of health issues, but the struggles are there nonetheless. 

I see God's work everyday in my son's eyes.  His innocence, his joy, his curiosity, his life.  I see God's work in our aunt who has beat so much and is still fighting with a smile on her face and the gall to still flirt with the respiratory therapist she thinks is a cutie (she is boy crazy).  I see the beautiful sky.  I hear the songs of the birds.  I feel the love from my friends and my family.  I get reminders of the dad I lost and love daily. 

My life is good.  I am so rich with love, faith, and joy.

The Best Days Of My Life

Hello all.  Another week down.  Another appointment under my belt.

It has been a rough week to put it mildly.  As many of us know, stress is becoming a major epidemic in today's society and culture.  Not only do those of us with chronic illnesses have things to worry about everyday, but the entire world is going through so much economically, politically, etc.  I always feel so overwhelmed with what I have on my plate, I find it hard to keep up with current events and pop culture because it adds a whole other level of worry.  My family, of course, is not immune to any of this.  As a prime example, I believe as a family, we had a nervous breakdown this past weekend.  In the days following, we have been trying to pick up the pieces and mend the residual damage.

In doing so, I have been avoiding modern technology.  I find, for myself, that refocusing my thoughts and priorities is usually what it takes to get my mind back on the right track.  I find myself resenting what I see on television or on the computer that I desire but do not have.  I find myself getting emotionally involved and attached to news stories from across the world, and in turn having a strong desire to do something about it.  In reality, I have no control over politics.  I have no control over natural disasters.  I have no control over who's cheating on who, or who's lying about what.  No control, must let it go. 

Today, I actually sat down and watch television.  I allowed myself to relax and watch an entire show.  John Ramsey was on this particular program.  He was discussing what has gone on in his life over the past 15 years, since the death of his 6 year old daughter Jon-Benet.  He lost his daughter, he and his family were looked at as having something to do with the tragic death, he lost his wife,  after her death the family was publicly cleared of any wrong doing in the death of Jon-Benet, and finally he found a new love, a new wife.  He has written a book about his ordeal.  I could imagine it would help so many going through any type of struggle in life to put things into perspective.

He said one important thing that stuck out to me.  He was asked how he was able to find happiness after so much turmoil.  He said that a few years ago a good friend asked him, "Do you think the best days of your life are behind you."  John said, "Well, yes.  How could they not be?"  His friend replied with a comment similar to: You have to think the best days of your life are ahead of you.  John explained why that made so much sense.  There has to be something to look forward to.  This is what we call hope.  You must believe that the best days of your life are ahead of you.

I quickly jumped to my desk to write this down.  I thought, "There has got to be some way I can use this.  Is it possible for the best days of my life to still be ahead of me?"  An honest question.  Ironically, as I'm talking to myself and jotting this down, John is still on the TV in the background explaining it may not be what we expect, it may not be what we planned, it probably isn't what we think will make us happy right this very moment, but if you don't believe there is something better out there for you...... God puts us on this earth for a purpose.  That lead me to one of my favorite thoughts, "God does not cause suffering in vain.  He would not put us through something so hard for no reason."  It started coming together for me. 

Still, even writing this blog, hoping someone out there is reading and actually getting something from my ramblings, I still don't feel that peace.  I am seeking it, actively.  I want that peace of mind that it is all going to be ok.  I am doing my best in every possible way, and that is all I have control over.  I have begun to pray outwardly.  I actually get down on my knees and open my mouth and speak my prayers.  I consciously decide to find the good in every situation, which actually starts becoming second nature quite quickly.  I actively slow my snowballing negative thoughts to grasp reality and look at things more rationally.  Yet, I am still not whole. 

I mentioned that I had another appointment this week.  This was a follow up with my immunologist, whom I am beginning to love.  No big news, thank goodness.  We are making an attempt to control the allergies he discovered in hopes that it will help with my energy levels and daily feeling of malaise.  He along with my primary believe that many symptoms from the combination of diseases I have may subside once my body is not under so much stress.  I believe they are right.  I have hope that the allergy medication along with allergy shots will help lift some of the weight off so my body can gain some strength and control. 

I also wanted confirmation on the most recent diagnosis.  It is new to me as is the terminology surrounding it.  I wanted to be able to relay the information on my blog as well as understand what I am facing.  I have APS II or autoimmune polyglandular syndrome type 2 aka Schmidt syndrome.  It is a rare disorder in which the immune system attacks several different organs or glands throughout the body.  Most typically it is seen with someone who has been diagnosed with Addison's disease (a condition where the body does not produce enough cortisol) along with Type I diabetes or Hypothyroidism.  I, however, have not been diagnosed with Addison's.  It has been thrown about and I have been tested for it, but no diagnosis has been made there.  Since it is a rare syndrome there is little information on it.  There are also very few doctors who understand the scope of it.  Even my immunologist consulted with doctors at a university to insure the diagnosis.  As I learn more, I will write more and inform more, but I would like to back away from that at this time to prevent misinformation to needy people.

I only want to inform, inspire, and release.  I hope that my new saying, "The best days of my life are still ahead of me" will begin to become a natural part of my thinking.  I hope that it can inspire me to do something positive with the nervous energy that builds up, as it always does.  I am always looking for inspiration.  I am always looking for that one thing that is going to spark the passion in me I had before it swept so quickly away.  I am here for a reason.  I am here for good.

A Work In Progress

What a whirlwind I have been in lately.  I honestly don't even know where to start.  As I sit and stare at this monitor trying to figure out how to get this all out.......

After the scopes last month and the follow up appointments I had, I still felt like I had nothing tangible to hold onto.  My mind compartmentalizes everything and tries to rationalize everything.  In reality, that is impossible.  Not everything in the world has a rhyme or reason.  Not everything is fair, and nothing is black and white.  Why, then, does my mind torture me this way?  I don't know, but I try to laugh it off and keep a grasp on reality.  As you can imagine, this is a challenge.

My most recent visits have left me with a few more answers and a plan of action.  I guess that was the hardest to come to grips with, I had no plan of action to follow.  So, with no easy way to explain things I will do my best.  It is so cathartic being open and honest and laying it all out there.  I don't feel like I have to explain or defend myself all the time, even if no one reads the blog.  It's out there. 

Digestive issues have only progressed in recent weeks.  Although I have been through all the testing that would uncover a clear diagnosis, I am usually the exception to that rule.  A diagnosis of chronic gastritis and pernicious anemia was clear.  The colon, however; has inflammation, but there is no clear source or disease process.  At this point it has been declared inflammatory bowel disease.  Let me just say, the treatment for these is definitely something that takes getting used to.  It is yet another life style change.  Plus, I am doing, learning, and speaking of things I never imagined would be part of my life.  I guess the thought of invincibility discriminates against no one.

It has almost become a daily torture.  Not only is there a new set of pills and treatment I have to work into my day, but the symptoms continue.  Not to the same degree, but they are there.  It is unimaginable unless you go through it yourself.  I actually worked with patients (when I worked) that had similar illnesses of the digestive system.  I remember feeling so sorry for them because they looked miserable most of the time.  I had the knowledge about the conditions, but never realized the enormity of it all until it hit me. 

I have to admit, this has been the most traumatic and devastating disease process I have had to embrace.  I imagine it like a stack of blocks my son would build.  One block wide, with each disease diagnosis and treatment outline, add a new block.  Once the stack gets tall it begins to sway and possibly crumble.  My tower has tumbled.  I have to pick up the pieces.  I have to gather all the new information along with the lack thereof.  I need to decide how I am going to stack these blocks in a way that they balance and hold strong as a standing structure.  I am working on it.

This week, I finally saw an immunologist.  This is supposed to be the doctor that gathers all the clues and puts them altogether to make a big picture.  Everyone around me is so hopeful.  Everyone around me is convinced that someone will find the source that links all these autoimmune diseases together.  I, however; lack that hope.  I have been to UNM.  I have been to the Mayo Clinic.  I have been to doctors and specialists all over.  In the beginning they are all bull dogs.  After a few tests are run and the doctor is left stumped, I have been tossed to the curb or the doctor has thrown in the towel.  I pray this is not the case this time. 

The doctor seemed, at first impression, ready to take on the task.  He began testing right away.  We did find out I am allergic to cats.  That is funny because my parents had cats my entire life.  I never knew.  I am also allergic to several trees and grass as well as mold.  My breathing is labored due to the inflammation in my belly.  It was good to walk out of the doctor's office with some new information.  I would imagine, since I went my entire life not treating these allergies, treating them may relieve some of the general symptoms I feel everyday.  The other thing this new doctor did was decide to test my immune system itself.  Can you believe that not one doctor has done that before?  Many have tested for specific antibodies that are linked to specific diseases, but not one doctor has tested the function and activity of the immune system.

The lab tests were done yesterday.  The doctor seemed eager to start this journey so he told me I would get the results once he got them.  If need be, we will do more testing thereafter.  They drew so much blood, I can't see how nothing would show up, but let's be realistic.  We are talking about me here.  I am the queen of going against the grain.  I am a master at not fitting into the box.  I am the outlier. 

I make an effort not to get my hopes up.  I do not have very much faith in science and medicine at this point.  Those who practice this are merely humans.  Mistakes are made, things are overlooked, bias is inevitable.  I can only pray for the miracle of answers to come our way.

This Christmas season is difficult.  My six year old son understands things more and more.  We have spent months focusing on my health.  Since Thanksgiving it has only become more consuming.  We decorated our house.  We have bought presents.  We plan on spending time with family.  I just pray his memories of this season are not tainted by all of this. 

Merry Christmas and Happy New Year!