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Tuesday, April 16, 2013

Roses & Thorns

Okay, so I guess the whole "feeling good" thing was just too good to last... On Friday, I started feeling rather awful, and couldn't figure out why. Finally realized that my heart rate was in the 140's... oh. I've been feeling super tired, shaky, nauseated, dizzy, and just overall yucky. My muscle pain went waaay back up. I started craving salt again. I feel like I'm not on enough steroids or something, but that can't possibly be the case, as I'm on a moderately high dose of them due to my arthritis. Super frustrating when things go up and down and I don't know why... I promise I didn't change ANYTHING!

That is just depressing, so I'll share some good news! Since my last post about my GI appointment with Dr. FancyPants, my obstructions issues have been improving! I mentioned a few posts ago that I've been doing a new treatment called Airrosti, performed by Dr. MagicHands. I think of this treatment, a type of Manual Therapy, as kind of like a chiropractor for muscles. Dr. MagicHands moves around the muscles and fascia to make sure that things are aligned properly and breaks up any knots and stuff (I am not explaining this very well). Frankly, I'm not totally sure that I completely understand what it is that he does, but I do know this: it is helping my neck and shoulder pain. I try/have tried so many different things - heat, ice, creams, ointments, stretches, exercises, meds, chiropractors, massages, P-STIM (similar to acupuncture) - and most of these things have helped to some extent - but this has really provided the most relief for me! Dr. MagicHands has been very clear from the start that I have underlying autoimmune issues that he cannot "fix." For awhile, he wasn't sure that he was actually helping me and got very close to referring me on to someone else. When I improve, I am never sure why exactly... but I really do think that it's his treatments that are making a difference with my pain! And I am very thankful for his Magic Hands for working their, well, magic!

I asked him to work on my belly as well... he initially refused, but after speaking with my PCP and Dr. Saturday, he agreed to try. Dr. Saturday told him, "If you think it could help Hannah... try it!" His Magic Hands immediately found the "problem area" on my belly (without me even telling him where it was!). He basically tries to move around the intestines to try to loosen up the adhesions. It's tricky because I have to keep my abdominal muscles relaxed so he can actually feel my intestines. The intestines themselves are so slippery that it's tricky for him to palpate them (and it's not the most comfortable sensation ever to have someone essentially deep massaging your sore belly). It's kinda weird, but I *think* it's helping... I've been able to move to some less liquid foods like rice cereal and refried beans... and I have not had pain or obstructions after eating them! I am very hopeful that this will help!

Of course, my body is all about extremes... would you believe that last night, after nearly a month of partial obstructions, I started dumping?? I lost over 2 liters of fluid in less than 12 hours. Although I've been pushing fluids, I'm sure I'm getting a wee bit dehydrated. Of course, the dumping doesn't help the dizziness, shakes, or high heart rate any! It's been a flurry of calls back and forth between various doctors, most of whom have been incredibly nice and responsive...

Tomorrow I see JP Dr, then Dr. Tourette (to check my shakiness, dizziness, tachycardia, fatigue, etc - bit nervous about this appointment, as over the phone, they basically told me that what I said was happening wasn't possible and I should be tapering off both kinds of steroids...), and then on to Dr. FancyPants to get tanked up with a few liters of IV fluids.

Tonight I have a pounding headache and unrelenting nausea to top it all off... the "methotrexate hangover" that happens about 24 hours after I inject myself with that chemo medicine. Some weeks it's worse than others... this week happens to be in the "worse" category. ;)

I recently saw something online about how each day is like a rose...whether we see the rose or the thorns is all in our perspective. Today, I'm choosing to be thankful for the roses in my life rather than focusing on the thorns! "Give thanks in all circumstances, for this is God's will for you in Christ Jesus." (I Thes. 5:18). I am thankful for the great men and women that God has provided for my medical care. My doctors and nurses really go above and beyond (although I'm reserving judgement regarding Dr. Tourette) to provide excellent care for my ever-changing, always complex needs! I am thankful to God for His provision of these folks who care about me as a person and are willing to think outside the box to make things work for my unique needs! Also thankful for my family for the care that they provide me daily... and for my mom, who's dropping her plans for tomorrow to drive me all around the metroplex as I play "musical doctors."

Hannah ;)

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