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.

No One Is Alone In This Big Ol' World

Rare disorder explains JFK's health woes - amednews.com

I was watching a documentary on John F. Kennedy today.  I was well aware of his political and public persona and mildly aware of some intestinal problems he had throughout his life.  I decided I wanted to look into it a little more because his symptoms, treatments, and complaints sounded so similar to my own.  I was so shocked when I found this article.  Talk about hitting a nail on its head. 

It is always nice to know you are not alone.....especially in your suffering.  Although, I have a great support system, I always feel like I can never fully allow my feelings to come out because no one around me would be able to fully wrap their head around my position.  Now, I have something to hold on to.  Someone I saw as successful and inspirational has just reached another level in my mind and heart.

Let's be honest. we all need a role model.

Celiac Scare Update

Yesterday I wrote about my fears of my six year old son developing Celiac Disease.  I was diagnosed in the summer of 2009, and have realized the severity of my own case over these past few years.  Just as with cancer, diabetes, and heart disease patients are told to alert their families of a diagnosis because it could be hereditary.  With my complex medical history along with my family's strong history of autoimmune diseases, my husband and I are on constant alert with our little guy.

He came home from school on Monday with a rash.  The rash persisted and did not respond to allergy medication orally or topically.  I took him into his pediatrician yesterday with my heart set on getting him screened for Celiac Disease even if his opinion of the rash pointed him otherwise.  I wanted a baseline, a warning, some sort of tangible evidence leading us to look for Celiac or let our guards down.

I have been extremely lucky with pediatricians for my son.  This one in particular has followed him for about 4 years.  He really takes the time to sit with me and explain his thinking when treating or diagnosing.  His first impression of the rash was of course and allergic reaction to something.  The good news, it does not look systemic.  It looks more like a contact reaction.  That means rather than him ingesting or inhaling an allergen that caused the rash, he rubbed up against something that caused the rash.  This could happen even through clothing. 

My son is an active child who gets in and out of anything and everything so this was no surprise to me.  At home we use hypoallergenic everything, but at school or at the river or on the playground anything could be the cause.  Considering he had a very active weekend outdoors and then went for his second day of school, I felt relieved thinking it could be totally random.

I still expressed my concerns about Celiac Disease.  Explaining again to his doctor my medical history and our goal for catching things early for my son if need be.  He acknowledge my concerns and gave his thoughts on it.  In lay men's terms he essentially said these things are considered hereditary.  Of course if someone in your family has cancer, or diabetes, or Celiac Disease, or heart disease than you are at a higher risk of developing it, but it is not a guarantee. 

Yes, there is initial blood testing for Celiac Disease, but to actually have a diagnosis in place you must (according to the National GI guidelines) have a biopsy of your small intestine confirming the diagnosis.  With the blood test there are two genetic markers they check as well as antibodies.  If your genetic markers come back positive, that does not mean you have Celiac Disease or will get it just the same as for the breast cancer markers.  Many women who have the genetic marker for breast cancer and a strong family history have a mastectomy as a precaution never knowing for sure if they would've ever actually developed breast cancer in their lifetime.  Our pediatrician views Celiac Disease the same way.

A blood test for a small child is traumatizing enough.  I don't even remember having my blood drawn until I was in my preteens, and that was devastating.  Then, what happens if the markers come back positive?  There is no pediatric GI doctor in our area so we would have to be referred 5 hrs away.  Then our six year old would have to go through an endoscopy and a biopsy.  Awfully dramatic for a preventative measure.  Even at that, what if the markers are positive but he has no antibodies and the biopsy is clear.....then we see our son as a ticking time bomb for the rest of his life unless the disease develops and presents itself.  Any way you look at this it would just add more stress and worry to the situation.

Now, to discuss hereditary.  The way the pediatrician described it to me made so much sense.  Now in science we have the technology to look at DNA.  We can isolate any gene and research it until we are blue in the face.  Any disease or disorder is a mutation.  You will see it somewhere in the persons DNA.  If the genes were immaculate, there would be no disease.  Therefore, people with similar diseases will have similarly deformed or mutated genes whether they be family or not.  So, hereditary is really an umbrella term.  OK, hair color, eye color, physical appearance, etc. are all hereditary, but again it is just the same mutation in the DNA causing the differences or similarities in people.  In this day and age we have access to so much knowledge.

Knowledge is good.  Knowledge is power.  But it can also lead to unnecessary hardships.  Wake up with a sniffle one day and go to any search engine.  Type in your symptoms and see what comes back.  The likely cause of your sniffle may be a sinus infection or allergies, but the Internet may lead you to spinal cord leakage.  A pimple in an unusual place on your body may lead you to some sort of cancer.  These scary and highly unusual cases do happen or there would be no information on them.  Unless there is some red flag pointing you away from the common, why allow your mind to go there.  This goes back to the saying, "Only worry about what you can control".

That is something I need to be constantly reminded of.......what is not in my control is in God's hands. 

The pediatrician went on to explain the signs and symptoms of Celiac Disease which I am well aware of due to my own experience and research.  He continued with explaining a case he just diagnosed not too long ago in a one year old.  He was reassuring me that he does realize this is a more common illness than previously thought and it certainly can develop or present itself early in life.  His opinion of our son was not a potential case of Celiac Disease.  When or IF a red flag arises we will address it then, but in the meantime adding stress to our plates as well as concerning our son and putting him through the testing is just not practical at this point.  He was very open and left the final decision up to my husband and I.  He realizes that his seeing our son for 15 minutes at a time every few months does not lead to "close relationship", but medically speaking he is sound.....we as parents have to be the ultimate judges.

End result? Hydro cortisone cream topically til rash subsides.  Keep an eye out for a recurrence so, if necessary, we can isolate the allergen.  In the meantime, we will continue living our lives as care free as we can.  Live for today.  Pray for tomorrow. 

Thank God for pediatricians/ doctors who take time to care for their patients as opposed to looking at their bottom line.  Thank God for children.  They bring joy and innocence into this crazy world.  Thank God for family.  If we three weren't a team, these minor scares and major trials would be impossible.  Thank God for today.

Celiac Scare Evokes Gratitude

The last few posts were a little dark.  The last year has been so turbulent.  I felt like I was literally in a downward spiral.  A Facebook friend with some strangely insightful posts actually helped pull me out of it a little.....along with tons of support from friends and family.  I am thankful to have them around to pick up the pieces as I fall.  We all need that at some point in time.  I am still picking up the pieces and finding my way back to peace and happiness, but I am definitely a lot closer than even a few weeks ago.

It is always darkest before the dawn.

Don't depend too much on anyone in this world.  Even your shadow leaves you when you're in darkness.

Two quotes I cannot take credit for, but have certainly helped me out.

School is back in session so my 6 year old is off to first grade.  I am amazed by how quickly time goes by.  I look at him on a daily basis and thank God for the blessing my husband and I received.  On my "not so good" days or when I am researching information for my health, I am constantly in aw of the miracle that is my son.  There is no rhyme or reason, especially not scientific, that he is on this planet.......and yet somehow, he is here and thriving.

Yesterday, my wonderful little six year old came home with a rash on his belly and chest.  He has never been a "sickly" child.  He had RSV as a baby due to an outbreak in our city, but was treated at home and pulled through fabulously.  He had tubes in both ears around 18 months, but that is relatively common.  Rarely does he have a cold or the flu, and certainly never any skin issues.  Due to my health, we use hypoallergenic everything in our household.  I can't think of anything that would cause this rash.

Autoimmune diseases are hereditary.  With thyroid disease and diabetes, I was told during pregnancy that he had no more than a 4% greater chance than the rest of the population of developing either of them.  With Celiac disease it is recommended that all immediate family be screened after a diagnosis is confirmed.  I have never had my son screened for any of these.  I take him in for check ups regularly.  His doctors know of my health history.  I put my trust in the doctors until I have reason to feel otherwise.

At this point, I cannot help but worry about Celiac Disease for my son.  He is a very picky eater as it is.  I try to feed him as healthy as possible with his limited palate, even introducing nutrition shakes to supplement his dislikes.  Going gluten free for this six year old will be a major challenge. 

My sister and I have a mutual feeling about these types of situations.  Prepare for the worst.  Hope for the best.  Both of us were diagnosed with Type I diabetes at the age of 20.  We are three years apart.  Our father had Type I diabetes for 30 years before succumbing to the complications.  Our brains are hardwired to fear.  So, as I sit here planning how to deal with this if my gut is right, I simultaneously praying for something mundane.

I am thankful that I am embarking on this journey before my son faces it.  My hope is that he will never deal with any of the health problems I have, but I constantly prepare for the day where I will need to walk him through some of it.  Today happened to be a day that I know for sure God is carrying me through my fear.

I am anxiously awaiting the school bell's ring this afternoon to take my little man to his doctor.  To pass the time while he is at school, it is usual for me to get errands and chores done.  I went to our local health food store today to get my staple vegan/ gluten free foods.  I hung around the freezer a little longer and looked yet again at this vegan mint chocolate chip ice cream.  Mint chocolate chip ice cream used to be my favorite. 

As a child, my family and I would go to Baskin-Robbins and each pick out a flavor for them to pack in 1/2 gallon tubs.  I remember my mom getting chocolate, my sister would get peanut butter chocolate, and I would get mint chocolate chip.  I also remember plenty of arguments with my mom. "You're not supposed to eat the whole thing in one sitting!"

After 4 years of systematically taking things out of my diet, I have been left with very little.  Especially considering I live in a small town in south eastern New Mexico where healthy eating is not on any one's radar.  The local grocery stores rarely have what I need.  We have this tiny little health food store that has very limited options.  You must be creative.  Not today.  I grabbed this ice cream.  NadaMoo Lotta Mint Chip.  http://www.nadamoo.com/

After eating my usual lunch (same thing everyday to prevent symptoms) I grab a spoon and the pint of ice cream.  I scraped under the lid first to feel the texture.  I wasn't excited.  The texture felt just like any other vegan/ gluten free ice cream.  Uh-oh.  First bite.......HEAVEN.  I have to say it is better than any other brand I remember.  I only had a few bites to prevent an upset belly later.  I have to be very gentle on my system.  But those few bites satisfied my sweet tooth, satisfied my ice cream craving, and didn't leave me wanting more.  It has been nearly two hours and I am still feeling pretty well.  This is a good sign.

What a relief!  Not over a month ago, an alert on Facebook lead me to find out that Haribo gummy bears were gluten free.  I rushed out to get them.  About a year ago, Red Brick Pizza opened up in a nearby town.  They serve gluten free dairy free pizza.  A lot of people with Celiac Disease also have some sort of sensitivity to dairy whether it be lactose or casein or both.  So, I evaluate my options and start to realize I am coming into a pretty good situation.

For most Celiac Disease sufferers fruits and vegetables are free foods.  Meats are also generally good.  Patients do need to be conscious of marinades and spices, but for the most part this is a safe food.  Coconut, Almond, and Soy milk are all very accessible these days even at Wal-Mart.  Frito-Lays, Hormel, Kraft, as well as many other companies are now listing gluten free products on their websites and on packaging.  Not to mention the surge of more gluten free companies like Glutino and Pamela's in small selection in many stores.  All you need is creativity and a willingness to change your habits.

As I have gone through these past few years, educating myself on every diagnosis and every treatment, I have learned so much (a blessing in itself).  Being a new mother through a lot of it was actually beneficial.  It keep my mind on what is important while giving me the will to change and fight.   What you eat really does affect so much.  The saying, "You are what you eat." is true.

Veganism is very difficult to follow, but is one of the healthiest ways to live.  That means no animal products or by products consumed at all.  Dairy in itself is very allergenic as well as inflammatory.  Removing dairy from your diet works wonders.  Gluten has been tied to autism, ADHD/ADD, and behavior problems in children.  Many studies as well as personal stories report drastic changes for the positive just by eliminating gluten from your child's diet.

Now, the time is getting closer and closer for me to go pick up my son and take him to his doctor.  No matter what the doctor's opinion on this mysterious rash is, I will request screening for Celiac Disease.  I am confident, should the test come back positive, we will be able to help this picky eater learn new habits.  I am at peace knowing I already have the knowledge to face this.  And on a final note, I am hoping the rash is a minor irritation and the screening comes back negative.  This has certainly made me reevaluate my own "difficult" situation.  With so much good coming from something so difficult........is it really all that bad? or just a bumpier road to bliss?

I believe the latter more and more everyday. 

It is all about how you react to a situation.  Knowledge empowers the reaction.