An Escape

Today I am letting go of all inhibitions....or the majority of them for this post.  I try to stay positive and always look on the bright side of things.  I have said over and over, there is no other way to live.  We would not not want to live in a world where the cruelty and pain take over the beauty and greatness.  In situations where I feel knocked down by all angles, I tend to have a very hard time keeping that positive outlook. Right now is one of those times.  Rather than internalizing all these feelings, as I usually do, I am hoping that letting them out here will prevent any lashing out to loved ones that may or may not be misdirected.

For some time now, since the end of August, I have been dealing with this incredible headache and what I can only describe as strange episodes.  I do have epilepsy so there is a clear history of seizures.  Although, I do not tend to get an "aura" or any indication that a seizure is coming on, I can usually tell if one is imminent in the near future (possibly days or weeks).  These episodes have not been seizures, in my completely unprofessional only-a-patient assessment.  There are periods of confusion and disorientation.  There are sometimes feelings of light headiness, dizziness, or a sensation like the earth has been ripped out from under my feet.  Those are all brief, seconds to half a minute at the most.  There are some flashing lights, bright lights, painful lights, sometimes along with tunnel vision.  The hardest part is the headache.  It is unrelenting.

In August my rheumatologist and endocrinologist suggest I talk to a neurologist (which I already have) for some other concerning issues looking more like neuropathy.  When I described these most recent episodes, they suggested I get in touch with my neurologist right away and let him know.  I did, thinking my seizure medication would only be increased, but instead he prescribed a dose of steroids.  My neurologist is very good at making decisions without explaining them to the patient.  I had no idea what the steroids were for, only that I was terrified to take them due to my diabetes.

I looked information up online using my symptoms and the steroid treatment he had given me.  My research kept leading me to sights about vessel inflammation in the head or brain.  The most common cause of this would be migraine but the more serious concern would be an aneurysm.  That completely frightened me because I had mentioned the initial episode to my husband and explained to him it felt like something had popped or burst.  I tried to push that all out of my head because it would all be too overwhelming to think about.  Plus, I am in the care of professionals, so let them do their job and I will do mine. 

I finished out the bout of steroid meds with little to no relief whatsoever.  I waited it out a few more days.  I tend to avoid taking any over the counter meds because I have so many prescribed, why add more to the mess?  With no relief in sight, another episode happened.  By that I mean, I had been having them throughout this period of time, but this particular episode was similar to the very first in late August.  I was very disoriented.  My head was throbbing, and these lights would not leave my vision no matter what I tried.  I called my primary physician and she sent me to the ER.

My husband rushed home from work and took me to our local ER.  There I was treated as if I had a complex partial seizure rebounded into a migraine.  I was given some medication for nausea as well as a muscle relaxer.  Within a few hours, I was let go as the pain let up.  All I wanted was to be at home with my son. 

The next morning I woke up feeling slightly better, but extremely exhausted.  By about mid morning the headache had returned.  This is into the third week.  After a few days debating whether I should call my neurologist (he is 3 hours away), call my primary physician (I am so tired of doctors), or try to self treat I finally called my primary.  Accidentally, I dialed her personal cell.  That turned out to be just what needed to happen because I did get to talk to her directly, rather than through a nurse or receptionist.  Initially, the week or so before when I was sent to the ER it was in hopes of getting an MRI or CT scan while one of these episodes was occurring.  That never happened.  I was only medicated.

My primary decided she would order the MRI she initially thought we needed, but in the meantime she prescribed a muscle relaxer to ease the pain and allow me to get through my days.  I am certainly not a pill seeker and pain medication is something I cannot take.

Today, exactly one month after the initial bad episode and the start of this terrible bad dream I went in for the MRI.  Unfortunately, some blood work needed to be done that had not been ordered so the MRI was done, just not the exact type my doctor wanted.  Frustrating, but I am hoping they find something (small and easy).  I am trying to not think too much into all of this.  Compartmentalize and let the professionals handle it.

In the meantime, I am still a mom and a wife.  My inlaws' side of the family had a family crisis at the same time, with an aunt being placed in ICU.  It was terribly frightening and tragic, but I am glad to report she is doing well now.  I can tell you she means an awful lot to myself, my husband, and my son so that wore us down pretty badly.  She was so ill, I felt like I had no place to complain or even show that these episodes and doctor visits/ conversations were frightening me.  I also wanted to be sure I was there 100% for those closest to her.  If I could not do anything to help, the least I could do was the tedious tasks that life still throws at us all in times of crisis.

Now, as I said, our aunt is out of danger and in the stages of recovery.  She is doing really well.  We have fallen into a routine for school, tae kwon do, and soccer for our six year old.  My husband's job seems to have stabilized his schedule a little bit more so that helps all around as well.  I even said to him this morning how happy I was that things were seeming to smooth out so maybe I can get back to feeling a little more like myself soon. 

The problem I am having; and, let me be honest, I have struggled with this from day one with all these health issues, is a terrible fear of abandonment.  I talk a lot about feeling isolated.  I feel isolated by my limitations as well as the general misunderstanding of my situation.  I am not very comfortable being open with people about it.  To me it sounds so out there and inconceivable, I can't imagine what others must think if I even give them a glimpse of how my body works.  I know for a fact that if I heard a woman telling me this story in casual conversation at the park for example, I would think she had some serious mental issues and was seeking attention.  I would blow it off, and possibly avoid her if I saw her again.  That would have been me 5 years ago, before I realized real people deal with real issues all the time even if it does not show on the outside.

I know I am loved.  I know I have a good support system in the small circle of friends I have along with my husband, my son, and our extended family.  I know in many different situations there would be someone I could reach out to if I needed.  I know when things get tough, most try to show their support even with distance between us and hectic schedules.  The thing is, to me, it feels almost forced. 

I, like all of them, love them so much.  The people I surround myself with and keep close are there for a reason and that is because I want them around.  I care for them.  I think of them often.  They make me a better person some how, and that makes me appreciate them.  I assume the feelings are mutual.  If not identical, there are equally good reasons they have love in their hearts for me.  For that, I am grateful.

Everyday that I wake up and face another day, I think of how nice it would be to not have to worry about the things I worry about on a daily basis.  We all have worries, but I remember the worries I had before these illnesses and the drastic change my life has taken.  If it were up to me, I would not change a thing because I have learned so much from this all.  I believe it has definitely made me more open, understanding, compassionate, and appreciative.  But, if it were up to me, I would walk away.

I would walk away from all the health struggles.  I would walk away from all the limitations it has placed on my life as well as my family's life.  I would walk away from the sacrifices I have had to make to accommodate theses illnesses.  So, in my head, I do not see why anyone else would not want to do the same thing. 

My 20s were stolen from me by diseases that were out of my control.  I did not get to turn 21 and go out for a celebratory drink.  I do not get to go to a nice restaurant for a date.  I don't even get to go to a restaurant for a random 20s birthday.  I do not get to go to bars or clubs.  (None of which I was interested in before, but I'd like the choice for myself)

My son is now six and starting sports and making friends.  He does not like to leave me very much because he worries about me.  He will only stay with one grandma over night, no one else.....and she lives 3/4 mile down the street.  He is in tae kwon do, but the tournaments are 3 hours away.  I have trouble traveling and without a job, we do not have the income to go to these tournaments. 

My husband is only 30.  It is football season.  I love football, most sports really.  I love to watch sports with my husband.  But, he is 30.  Every now and then he wants to go to a sports bar and watch the games or have a friend over to watch the games.  He forfeits nights out with his friends to spend nights in with me, even though I am usually asleep by the time our six year old is in bed.  He withholds invitations for his friends to come to our house to watch the games because he knows it will be too much on me.

These illnesses have taken so much away from us.  They have taught us to be better parents and better spouses.  They have taught us to be better people.  We listen to one another and think of one another more so than most young couples.  We communicate on a level even older generations have not mastered.  We have our own share of problems, but we have so many good things.  I just feel like these illnesses are taking too much away from everyone around me!

I want my son to have a typical childhood and enjoy more time with his friends doing kid things.  I want my husband to not worry about me and our finances so much.  I want him to be able to spend Monday Night Football out with his best friend for a drink and some unnecessary vulgar talk amongst men.  I want my mother in law not to have to call every single day when I am alone to make sure everything is OK so she can go about her day.  I want my friends to not worry about bothering me when I am tired, or avoiding inviting me some place because they know I will not go.  I want all of these things.  That is not my life though. 

This is my life.  I am happy in it.  I am learning to accept these difficult things.  I am OK with missing out on so much.  I would prefer to spend every waking moment with my son or my husband.  I would love nothing more than for them to be infinitely happy and just know how much I love them.  But I need rest.  Any moment I have that is not obligated to a mommy duty or a wifely duty, I want to read a book in bed, or watch trashy television, or sleep.  I do everything I physically can in a day, and beyond that, I just want rest.  Sometimes even talking exhausts me.

I do not feel that anyone around me really enjoys any of that.  I appreciate them giving up their time and energy to be with me.  I appreciate all the sacrifices they all make.  I appreciate, especially, the things they do to show me they are thinking of me even when I am not around.  I appreciate the fact that they are all still here, even through these tough years.  I just do not believe that they want to be.  I believe they want to live the lives they are capable of living.  And that makes me feel AWFUL.

I feel so guilty about it all.  I feel guilty for my son.  I feel guilty for my friends and extended family.  Mostly, I feel guilty that my husband's 20s were stolen from him as well.  When he should have been out with the boys, he was nursing me back to health.  When he should have been finishing out college, he was doing clinicals for a vocation and working full time while I was at the Mayo Clinic.  While he should be using his vacation pay to take an actual vacation, he saves them all up for my out of town appointments. 

I am constantly trying my best to make those around me know how much I appreciate them and love them.  I do not feel it is enough for what they go through.  I am in constant fear that one day they will all throw in the towel, and go lead the lives they want to lead.  Why would anyone want to deal with fear, sadness, isolation, and boredom when they are capable of so much more than what I have to offer? 

And why can these feelings of guilt and fear of losing it all not go away?!  They eat at me day and night.  I am so sensitive to any comment or facial expression, I can turn anything anyone does into something that is somehow my fault.  I must have caused these problems.  I must have made myself sick.  I must have done something to cause it all.  I must like the negative attention.  I must be crazy and everyone just caters to my crazy. 

I want to be better so that anyone who is around me, enjoys being around me.  I want to be better so that I do not question my own sanity.  I want to be better so that I do not question my own abilities.  And most importantly, I want to be better so my son does not have to see his mom go through this and me having no idea how to handle it gracefully.  I hope he learns positive lessons.  I hope he does not resent me one day for all that I cannot give him.  And I truly hope that those around me will decide to live the lives they want to live whether or not it includes me with all this ridiculous baggage.

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.