Capture Your Grief: Days 3 & 4

I did not get the chance to blog Day 3 yesterday since we were driving home from my doctor's appointment in Houston.  Unfortunately J had some food poisoning from his tuna sandwich at lunch and was very sick the entire way home, thus we did not make it home until almost 11!  He is much better today :)  So here are yesterday and today's Capture Your Grief pictures.

Day 3: After Loss Self Portrait

    
This picture was actually taken on October 3, same day as the topic.  I thought it was pretty fitting that my After Loss Portrait was in front of the UT Health Science Center in Houston's Medical District.  After losing Taylor, we were not able to grieve "appropriately" because we were thrown into the whirlwind of my Turner Syndrome diagnosis.  We then were forced to grieve not only the loss of our baby girl, which is impossible in itself, but also the loss of what I knew about my body and how it is failing me.  So after endless doctors that did not know how to help me, my wonderful husband hounded the doctor at the Turner Syndrome Clinic and was able to get me an appointment for October's clinic.  The TS clinic is ran by Dr. Rivera-Davila and only treats adults the first Wednesday of every month.  So we traveled to Houston and I had the most informative and productive of any appointment I have had in who knows how long.  She is running all of those tests that I was so worried about, but the other doctors pushed off and the best part is I didn't even have to ask, it was her idea to test me.  She also threw in a few more that I didn't even know to be concerned about.  She took blood to check the following: kidney function, cholesterol, Celiac's disease, diabetes, and I'm sure many more things I didn't even catch in our conversation. She was so completely thorough and understanding and I also felt completely at ease with her personality.  She also ordered an ultrasound of my kidney and a bone density screen, which I hope to have done closer to home and have the results sent to her.  Before leaving, I agreed to participate in a research study for people at risk for heart complications, so they too received some of my blood. 

Day 4: Most Treasured Item

My most treasured items are those that take me back to my favorite memories.  Hearing her heartbeat for the first, and last time.  Lord, please help me to never forget the feeling of witnessing the miracle that was my baby's thundering heart.  We took weekly pictures of my growing belly and these pictures I have sometimes feel like the only proof that she was real, that she belonged in our world for a short time.  The top right picture was taken exactly one week before we heard the horrible words that forever rocked our world.  She was only with me 11 weeks, but she is forever in my heart.

She sent me this beautiful sunset on my drive home from work today.  I had to pull on to the service road so I could stop and take some pictures because I just knew it was from her.  The way the lights beamed down, it had to be something from Heaven. 

~T.

The Neurologist

  An appointment with a neurologist probably isn't on the typical list of doctors to see when diagnosed with TS, however I have already been seeing a neurologist for about a year now.  Since I was due for a follow-up with him, I decided to pose some questions.  I have found my neurologist to be one of the most intelligent people I have met and last year he was actually the one that discovered my Vitamin B-12 deficiency.  After initiating B-12 injections, I have found such a great relief to a lot of my joint pain (a random, unexpected, yet positive side effect to adding B-12).  Since he caught something, seemingly simple but apparently not since no other doctor did, I posed the question of testing for Celiac's disease and the MTHFR test, which will tell you if your body is able to break day folate/B vitamins appropriately.  This test is used for two reasons: 1) depression that has not been alleviated with anti-depressants because your body may not be synthesizing correctly and 2) recurrent miscarriages due to blood clotting issues.  Although he stated he appreciated my research and feels I will have to be an advocate for myself, he feels I need to go back to all the other doctors and provide this new diagnosis to them and allow them to run a full gamete of tests and not just pick and choose.  He said he is shocked to find out that I have TS because I am not the typical phenotype.  He looked at me in amazement and stated "I have never met anyone like you!"  Any other time that statement would have sounded seductive lol, but in this case I told him that was not necessarily a good thing.  He told me he had never met a mosaic TS before, but would definitely be doing some research for me.  At least I have him in my corner now. 
  My husband and I decided to call around to see if any of the pediatric TS clinics can recommend an endocrinologist that specializes in TS for adults. Apparently that is definitely a direction I need to head because some signs of pre-menopause can include.... joint pain!  So there may be a lot of my issues that can be fixed if we can see to get any hormonal issues straightened out.  I had never had a hormone check because... well I'm only 29, so who would have thought?
Just trying to navigate through all the craziness....

~T.

Strength Found

Yesterday at church God spoke to me.  I mean spoke so clearly that I felt He could have been standing in front of me speaking out loud.  While singing the worship songs, I began praying and telling God that I just don't even know what I am supposed to be praying for.  I have tried and tried to pray and after losing Taylor Grace (1st blog), I learned that just because you pray and believe, sometimes God has a different plan.  This knowledge can make prayer a very difficult thing and so I have struggled with how to pray, knowing God's plan may not be what I am praying for.  Saturday was such a low, low day for me after overhearing a conversation about someone about to deliver their baby, her due date is this week.  I really was feeling like having a baby was not a possibility for me and that I was just not "getting it".  As I was praying I told God "I don't know how to pray, I am trying to understand [everything going on], I just don't."  Very quickly and very distinctly the words "You don't have to understand, I do" came into my head.  Then I prayed "But God I don't think I'm strong enough to handle this." Just as quickly as the first time, I heard "You don't have to be, I am strong enough."  I wish I could explain into words how I knew those words were from Him.  I had the same conversation with my husband the night before and he told me "you are strong enough", but I just knew I wasn't and that is why I have been struggling so much.  BUT, God knew the words I needed to hear, even if I never knew what those words were- God is strong enough.  So I share these verses with you:

The Lord is my strength and my song; he has become my salvation. -Psalm 118:14

He gives strength to the weary and increases the power of the weak. -Isaiah 40:29

The Lord is the strength of his people, a fortress of salvation for his anointed one. -Psalm 28:8

The Lord gives strength to his people; the Lord blesses his people with peace. -Psalm 29:11

I can't tell you the peace I felt after I heard those words.  I have allowed myself the opportunity to not spend every waking (and sleeping according to what my dreams have focused on) second on worrying about what is to come.  Worry only robs today of it's joy.  I have found the one thing in my life I truly and honestly cannot control, so I must give it to God.   

Cast all your anxiety on him because he will give you strength. -1Peter 5:7

Next week I follow up with my neurologist, whom I have been seeing for about a year.  I will update him on my diagnosis and see if he has any insight.  He is the one who introduced me to the joys of Vitamin B12 and its miraculous effects on me.  I plan on asking him about the comorbidity between TS and Celiac disease.  I'm wondering if that may be the answer to my long-standing very painful stomach issues.  Always more questions, right?

~T.