Before the pain passes in peace...

Last week, we finally found out why I've been having chest pains.  I got diagnosed with costochondritis which is inflammation of the cartilage between the ribs.  I'm told this usually comes after viruses...so in my case, the symptoms started when I was in the hospital for the flu last month.  I guess this condition mimics heart attack symptoms because of the severe pain, but thankfully, it's not dangerous. :)

Currently, the doctors at Cincinnati Children's are reviewing the 200 pages of chart notes that my doctors have written about me.  Haha, I wish I could read their notes. ;)  That's probably gonna be a long process, but once they finish those and send me some patient questionnaires, this will help them decide on treatment and whether I need to see any other specialties at the hospital.  So hopefully, we'll soon have a better idea of how many days we'll be in Ohio!  I'll be seeing 3 departments so far: Human Genetics (the EDS clinic), Neurology, and Pain Management.

I wanted to share this other poem with you.  It's been on my heart lately.

Before the winds that blow do cease,

Teach me to dwell within Thy calm:

Before the pain has passed in peace,

Give me, my God, to sing a psalm.

Let me not lose the chance to prove

The fullness of enabling love.

O Love of God, do this for me:

Maintain a constant victory.

Before I leave the desert land

For meadows of immortal flowers,

Lead me where streams at Thy command

Flow by the borders of the hours,

That when the thirsty come, I may

Show them the fountains in the way.

O Love of God, do this for me:

Maintain a constant victory.

~Amy Carmichael

This is my prayer: "Father, before all this pain I have passes in peace, I just want to keep singing praise to Your Name!  In this storm, help me, Lord, to learn to dwell within Your calm.  Thank you, God, that there is always victory in You!

April 15th...a date near or far?

Well, it's official!  Or, I guess I should say "half-official." ;)  April 15th is the tentative date for my first appointment at Cincinnati Children's!  *small sigh*  I am grateful that I can see them sooner than July (we were told at first that the EDS clinic is booked until July, but they have been trying to work things out which has been a challenge for sure), but April 15th is still over 2 months away and I'm not feeling any better. :(  So my neurologist is gonna try to be in touch with their physician priority line to get me in even sooner, but first I'm waiting to hear the names of the doctors I'll be seeing as she needs names as well as the phone number.

Updates:

Head: My headaches have still been very bad.  I have to use an ice pack every now and then again since pain meds don't help.  I'm very thankful for ice. :o)

Eye: My left drooping eyelid is still there, but sometimes people don't even notice it which I'm very glad about! ;)

Neck: I saw my spine dr. a few weeks ago and had flexion/extension x-rays of my cervical spine again.  In addition to anterolisthesis (vertebrae slipping forwards onto each other), I now have retrolisthesis (vertebrae slipping backwards) also.  On another note, my atlanto-axial instability is still mild thankfully, so I don't have to see him till January. :)

Shoulders: My right shoulder is still pretty loose and my shoulder blade pops out often, so my physical therapist wants me to see him twice a week now.  My left shoulder is starting to become a problem since it has to work more than my right..

Heart: Lately I've been experiencing a lot of chest pain.  I'm not sure if it's because my heart is always tachycardic (POTS issues) or if something else is going on.  Praying that the EDS clinic will be able to find the answer.

Hip: Since my left leg muscles are weak, they're not able to hold my hip securely, so I'm now having lots of aching pain/crunching/popping. :(  It makes walking painful!

Feet: This week the CRPS pain in my feet has unfortunately been increasing, but the lumbar sympathetic block I had on Jan. 30th gave me about 2 weeks of less pain so that's a praise! :)

I know I look "normal" on the outside, so I just wanted to give you a little picture of what's going on inside my body. :)

Stay tuned for more Cincinnati news!

Tuesday Thoughts

My bilateral lumbar sympathetic blocks on Wednesday went very smoothly with no complications! :)  Thank you for your prayers!  Now I'm trying not to overdo things or let my feet get cold so as not to start another CRPS flare-up.  It's difficult to do, tho', in these winter months.  I can tell the pain starts to increase when my feet aren't very warm..

doncha love this picture? :)  i've been blessed to know Stew, one of the pain nurses, for going on 2 years now!

Today I saw my neurologist, and at this appointment, she completed a referral for Cincinnati.  Yay! :)  The form will be faxed tomorrow!  The one my pain dr. filled out last week has already been received by the hospital, too.

Tomorrow my mom will call CCHMC's concierge services---they're the ones who will schedule the appointments close together and arrange everything.  Isn't that neat? :)

This afternoon, I also saw the neuro-ophthalmologist at the OHSU Casey Eye Institute.  She and a resident did a whole neuro work-up with testing, but unfortunately, today I wasn't experiencing the nystagmus, and she really needs to see it herself to pin-point what's causing it and everything.  So, once the abnormal eye movements come on again, I'm to let her know and schedule a follow-up appointment.

I read this "poem" a few weeks ago and wanted to share it with you.  It was written by a mom who has a precious little adopted girl with congenital heart defects.  Ivy Joy has had to have numerous open heart surgeries, something a parent never wants to see their child go through.  The mom (I encourage you to read her whole blog post!) wrote, "Sometimes God answers our prayers differently than we expected. But He still answers."  So very true.

I asked for strength and God gave me difficulties and made me strong.

I asked for wisdom and God gave me problems to solve.

I asked for prosperity and God gave me the strength to work.

I asked for courage and God gave me dangers to overcome.

I asked for patience and God placed me in situations where I was forced to wait on Him.

I asked for Love and God gave me troubled people to help.

I asked for favors and God gave me opportunities.

I received nothing I wanted and received everything I needed.

My prayers have all been answered.