Gems of the Heart

                                                          

What if you had a second chance at life?  Would you make the same choices or mistakes you made before?  I believe we all make the best decisions we can, given the information and resources we have at the time. But, what if you knew everything that was going to happen, after the fact?  Sort of like "Hindsight is 20/20?"  I do believe that then, we might just take a different path.  For most of us, that would mean the shortest, less painful path to happiness.  But is that really the BEST path for us?  Isn't there lessons to be learned when going through painful and exhausting times?  No Gain without Pain, Right? 

I believe there are little treasures along the path of loneliness, pain, grief, rejection, and confusion.  They are little "diamonds in the rough" you could say.  One must look for them carefully, otherwise they are easy to miss. "Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance;  perseverance, character; and character, hope.  And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us." Romans 5:3-5 (NIV)  Therefore,  collect for yourselves sapphires of strength, pearls of perseverance, emeralds of empathy, and the diamond of hope, aka "hope diamond." The "hope diamond" is the most precious of all "character gems", because without it life can be meaningless and despairing.  How can one stand the test of time and trial without it?  You must be asking yourself right about now, "Can't I just skip getting all those little gems and just go for the Diamond of Hope?" No, no you can not. You can not "Go past Go and Collect $200". You can not skip a step or go straight to the end because there is training and lessons along the way that must be learned.  One can't be a novice at Karate and expect to have a black belt the same day.  Each trial, each pain along this journey called life is preparing you for the next step.  Be patient therefore friends, because someday you will have a treasure chest full of gems that you have earned, rightfully so, and that no one can take from you. Use those gems to bless others, so that they too can know the HOPE to which you have.


~Lori~

My Journey

                                                                                                                                       



"You look like you have P.O.T.S."  Dr. Karabin stated to me as she walked into the exam room.  "The tilt table test also shows that you are positive for P.O.T.S as well."  I glanced at my husband Shaun with relief.  I had waited for this moment now for about a year.  I finally had a diagnosis, but now what?

What is P.O.T.S?  It stands for Postural Orthastatic Tachycardia Syndrome and is a form of dysautonomia.  What the heck does that mean?  Basically, I have a disorder of my autonomic nervous system.  My body has trouble maintaining homeostasis when going from sitting to standing.  My heart rate really speeds up, sometimes my blood pressure can drop, and my body has a hard time getting blood from my legs back to my heart and brain.  Anything that your body should do automatically is affected by this disorder.  The main symptom that I had was debilitating dizziness. It was a getting off of a tilt of whirl and having the flu everyday of your life bad.  Among dizziness and nausea came a slew of other symptoms as well. I have digestive issues, overactive bladder, headaches, a pain in my side that lasted 1 month, vibrations in my legs, food sensitivities (have to limit gluten and dairy), black outs, exercise intolerance, sleep issues, brain fog, bad short-term memory, and blurry vision.

 I had all these symptoms and none of them made sense.  I looked like a healthy individual on the outside but why did I feel so bad on the inside?  I knew something was wrong with me but no doctor could come up with an answer that would explain all of my symptoms.  For the longest time my doctors kept saying that I had migraine induced vertigo.  I could never accept that as my only and final diagnosis because although I had an increase in migraines, I was mostly dizzy without them.  I was becoming very depressed because I felt so sick but didn't know what was wrong with me. After almost 11 months without any answers, I really saw the work of God in my situation.  By chance I was reacquainted with a friend from my old church. I always knew that she struggled with her health but I did not know what her condition was.  When we met for coffee , she started telling me that she had dysautonomia  and her conditions seemed very similar to what I was going through except that she struggled with fainting a lot and I did not. Then my husband was talking to a lady that he carpools with about my condition and the woman responded that she knew exactly what my condition was.  She said that she believed that I had P.O.T.S.  That week I had a follow up with Dr. Weintrub from the Michigan Head Pain Neurological Institute for my migraines.  I began to tell him that I was experiencing more and more blackouts, so we decided to test my blood pressure and heart rate sitting and standing.  My standing heart rate was 30 beats higher than when I was sitting.  From doing research, I knew that was a common sign of someone that has P.O.T.S.  Dr. Weintrub then referred me to  Dr. Blair Grubb in Toledo to have a tilt table test done to see if I would come back positive for the disorder.   That week I talked with someone that I had known for a while but didn't realize that they also had dysautonomia.  The funny thing is that she also at one time was a patient of Dr. Grubb too! After I talked with the third person that had dysautonomia that week, I knew for sure that is what I had before I even took the test.  God often confirms things to me in threes and to have that many talk about dysautonomia to me in 2 weeks is astounding given that only 500,000 to 1,000,000 people have it in the entire United States of America.  I was so lucky to have my test done at Dr. Grubb's office and to get in a month later because the normal wait to get in to see them is 1 year.  Sure enough, I came back positive for P.O.T.S and since I was scheduled to go to the Cleveland Clinic in the same week, I decided to still see what they had to say.  The Cleveland Clinic also confirmed the diagnosis of P.O.T.S and added neck induced dizziness and migraine to my list. Dr. Karabin believes that my P.O.T.S is caused by genetics specifically a connective tissue disorder that I have.  I look back on my life and I see when my P.O.T.S was acting up; fainting for no reason, being tired all the time, having blurry vision and dizziness at our wedding.  I see brief moments that were sprinkled with P.O.T.S, but my symptoms didn't come into full effect until I was involved in a car accident.  The car accident itself was somewhat minor, but because I have a connective tissue disorder it really shifted vertebrae in my back and neck and sent my autonomic nervous system over the edge.

So what do I do to correct it?  Well first of all, the most predictable thing about P.O.T.S is that it is unpredictable.  I have to deal with the symptoms everyday, but some days are better than others.  I can feel fine one moment and all of a sudden I can feel absolutely awful.  One day I can go to the mall and meet with friends and the next I might not leave the couch for most of the day.  I now take medicine which seems to help.  I have to change my lifestyle as well.  I have to exercise to keep up my endurance.  According to Dr. Grubb it takes 3x the amount of energy for someone with P.O.T.S to function versus a healthy individual.  I have to watch my stress level because high stress really exacerbates my symptoms by creating a fight or flight mode in my body. If I am stressed,  I lose my vision and I get really dizzy. Hence, why I have to work part-time, take lots of naps and relax.  I don't take showers in the morning because it is too hard on my body. I have to drink lots and lots of fluids and I can't eat too much at once because if I do, the blood flow goes to my stomach and not my brain.  All these changes are minor if it means feeling better.

The reason I wanted to share my journey is the hope that I can help someone else.  I never want someone else to go through what I went through.  I want to bring light to this rare condition so when someone sees or has these symptoms they don't have to go through a year of agony before they get answers and treatment.  Being dizzy 24/7 for a year put me in a very dark place where the thought of ending my life seemed better than enduring one more day of hell and I never want that to happen to anyone else.  The sad thing is that doctors do not even study about dysautonomia in medical school but for some reason they cover it in veterinarian school. Well sorry, but that is not going to help me!
If a doctor has never heard of it, how can they possibly diagnose and treat it?

If you are dealing with a chronic illness and still do not have answers, keep searching until you get them.  You will finally find the help you need if you don't give up. Seek out a support system and from the words of Journey, "Don't Stop,..... Believin'!"

For more information about dyautonomia/P.O.T.S, feel free to contact me or click on the link below:

http://www.dinet.org/index.htm

When I don't see a way...

I recently have felt the urge to write again.  I have only blogged once in my life and that was 8 months ago.  It seems like nothing has changed since that time, but everything has changed as well.  If I start blogging on a regular basis (which I think I will start doing), I will warn you in advance that I will probably not spell things right, be grammatically correct, and most likely bring my English teacher to tears from my errors.  Math has always been my strong subject, but not English.  With that being said, if you are a person that can't overlook a misplaced comma or run-on sentence, then Honey... this blog ain't for you!

Now that I have forewarned you of my weaknesses, we can move on to the good stuff.  I want this blog to be about my journey through this difficult time in my life.  I will talk a lot about God, my feelings, and lessons I am learning along the way.  I hope that through my blog I can help someone else. The one thing that I don't want to happen is to have my suffering wasted.  I can be bitter or I can be better, and I am going to chose the latter.  Believe me, I have really struggled with being jealous of other people's health and ability to go through life seemingly without any hiccups.  That is when I have to remind myself that everyone has battles of their own and for some reason, dealing with a health issue is on my plate at this time in my life.

I look back at the blog I wrote in December and I am sad to see that my circumstances have not changed much.  I wish I could blog today about the amazing healing that God provided for me, but I can not.  The truth is I am not healed.  I am weary and I am broken.  I knew there was great suffering that people have endured on this earth, but I never thought it would be me.  I feel for people who had to go through a major financial crisis, came from a dysfunctional family, were sexually, physically or emotionally abused, who have been betrayed by a spouse, or who have lost someone very close to them.  The loss of what should have been or what should be is almost unbearable.  You feel like no one really understands how you feel.  It is such a breath of fresh air when you find someone that has been down the same road and you can relate with each other.  I never thought I would have to be this uncomfortable, almost to the point of torture for so long.  Where are you Lord?  When God when?  Do you see the suffering, do you see the tears I cry at night?  Do you care?  Only you know Lord that when people ask me how I am doing and I reply "good", that really I am screaming on the inside, "I can't take it anymore!".  I want to be real with people, but even I get sick of talking about how crappy I feel all the time.

So I am here.  I am at the point where the emotions of this dizziness debacle are so raw.  I have nothing left.  I feel like I have nothing more to give.  I don't know how much longer I can fight this fight: the endless doctor visits, the concoctions of medicine,  the speculation of if my diagnosis (vestibular migraine) is correct or if it is something else, and of course the exhaustion of being dizzy almost  all the time.

But this is perfect, don't you see?  This is exactly where God wants me.  For when I come to the end of myself, this is when He can do His amazing work. I believe that He already has the right doctors, the right diagnosis, and the healing all lined up in His perfect timing and in His perfect way.  All I need to do is trust.  I will do my part and be still and know that He is God. (the stillness part can be very challenging, especially since I am a type A personality).   Now is the time that He can do exceedingly, abundantly more than I can ever ask or dream of. So if you have been dealing with something for several months or several years, I want to encourage you and I  that even when we don't see a way, He can make a way. 

Health is Wealth

I feel like I am ready to go on the T.V. show "Mystery Diagnosis."  As most of you know, I have been suffering from extreme dizziness, horrible headaches, ear pressure, and nausea.  It has been so bad that I have had to miss work, I couldn't read, watch TV or drive at times.  Thank God not every day is like that, but the couch has become too much of a friend to me lately.  It has been going on for a month now and after 2 Redimed visits, an ER visit, 2 ENT visits, and a MRI, we still don't know what is exactly wrong with me.  All we know for sure is that there is bulging fluid behind my ears.  Next week I am getting more lab work done and I am getting a sinus CT scan.  Hopefully we will have more answers then.
I have had a couple of "moments" during this time period.  I know I was probably Cruella Deville to the nurse practitioner at the ENT who tried to tell me that I had no fluid behind my ears even though it was confirmed by two other doctors.  I had a melt down of tears at work when someone asked me how I was doing.  One thing I have also realized is that there is a holiness to suffering.  I think God grants an extra dose of grace when people are going through suffering.  All we have to do is to quiet our complaining and He will reveal Himself to us.  It might be in a more powerful way than if we were not going through a tough time.  A huge source of my frustration came fromm encountering a few doctors who would not take the time to really help me.  Thank God  I now have 2 great doctors who are not going to leave any stone unturned.  I am trying to take one day at a time and even just each hour at a time.  I may feel fine in the morning and 30 minutes later my world is turned upside down (literally). haha Sorry I couldn't resist.
If I have learned anything through this process, it is that I can't try to figure everything out. I will end up exhausted and frustrated if I try to do so.  I need to do my part and let God be God.  I am more thankful for things too.  I have a appreciation for people who have a chronic illness or disability and they continue to live life to the fullest potential that they can.  My work family, husband, immediate family and friends have been so understanding and helpful to me.  I am so grateful for that.  God is our "Great Physician" and I know "this too shall pass."  Until then, I am going to try to have a good attitude and when it does pass, I might just go sky-diving to celebrate.  Want to join me?