Surgery date :)

Last week, I had 5 appointments---all at OHSU..  I feel like I live there! lol  But do you want to hear some good news?  Surgery had a cancellation, so I was able to see them this past Wednesday instead of the previously scheduled consult appt. the beginning of August!  All the praise goes to God!  My 6th surgery (jejunostomy feeding tube placement) is now scheduled for Aug. 7th (pre-op is Aug. 5th), just two and a half weeks away!  If all goes well, it will only be a one night stay in the hospital.

I'm glad this surgery is coming soon.  I'm still losing weight again, and on top of all my other GI diagnoses, the general surgeons gave me another diagnosis called Failure to Thrive (FTT).  It's odd to know I now have that..

The CRPS pain in both of my feet and the muscle biopsy site has been so horrendous.  I haven't been sleeping well at all, and I often have to keep my feet over the side of my bed because sheets cause pain!  I saw my pain doctor on Thursday, and I'm just so grateful for all that he does to try and lessen CRPS flare-ups.  He wants to do another bilateral lumbar sympathetic nerve block which is scheduled for next Wednesday the 30th.  We discussed the J-tube surgery, too, and his recommendations for pain control during and after the surgery.

Next week, I also have a follow-up with my neuro-ophthalmologist, and my orthopaedic spine dr. wants to see me as well to check up on everything with scoliosis x-rays.

At the recommendations of the mito specialist and my neurologist, I recently started a bunch of high dose antioxidants and supplements---this combination is called a "mito cocktail." :)  Not sure if anything will help, but it's worth a shot. :)

4 years ago today!

July 8, 2010, I had foot surgery to remove a hemangioma that I had in the bottom of my right foot.  I was only 17 years old. :o)  I was born with that birth defect---it made walking and any other type of activity painful.  After that surgery, a whole host of problems started.  I developed a hard, hypertrophic scar---it was like a rock and definitely not normal.  I was so sad to again find out I couldn't walk without pain....talk about ironic! ;)  Easy scarring and a bunch of other symptoms led me to an Ehlers-Danlos Syndrome diagnosis 20 months later.

That right foot surgery also caused me to develop severe Complex Regional Pain Syndrome which spread to my left foot as well.  I couldn't bear weight on my feet and dealt with terrible, sharp burning pain, swelling, and autonomic problems daily.  I didn't get diagnosed with CRPS until I got referred to the OHSU pain center 8 months later.

All these issues definitely prepared me for the hard trial that would come down the road in 2012 when I started dealing with mitochondrial disease symptoms.

Still, 2010 and 2011 were tough years, but I see God's sovereignty through it all!  I never walked alone.

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In other news, consult with Surgery (for the J-tube placement) isn't until Aug. 6th.  And that's just the consultation..  It's the soonest they can get me in. :(  I am on the list if any other patients cancel....hopefully these next 4 weeks will go by fast.

A lot of scar tissue is building up under the muscle biopsy incision (that's the nature of EDS), so my physical therapist has been working on trying to break it all up.  It's so painful.  I have a feeling CRPS is flaring up in that area, but we'll see what my pain doc says next week.

Tomorrow, I see my neurologist to update her on all that's happened.  And the next few weeks, I have a lot of follow-ups with Physical Medicine, Neuro-ophthalmology, and Spine!  That's on top of all the therapy appointments.  It's been a busy summer already!