Month: January 2017

I followed up with the rheumatologist today after the visit with the pulmonologist two weeks ago.  The good news is that the Whole30 eating plan is helping.  Even the doctor noted I am much more animated and in 19 days of eating this way, I have removed 5 pounds.  I have been very strict with myself.  (Although I dream about eating donuts, pizza and jelly bellies.)  I have thrush in my mouth again.  But that goes along with the prednisone.  Until I get off of it, I will continue to have a flora imbalance.

He was pleased to see me weaning off the prednisone and hopes that by the time I see him in May, I will be completely off of it.  Me too.

I did share with him about the information I had found out regarding eating non-inflammatory foods.  I gave him a copy of the Whole30 rules and the shopping list that excludes nightshades which cause inflammation.  He said that there has not been enough studies regarding arthritus and intake of food.  He was pleased with my research and told me to continue with this eating plan.

We discussed a few of the medications and came to the conclusion that to leave everything the same for now since it seems to be working.

So….I will let you know how much weight has been removed when I weigh in officially on February 6th.

In the mean time, I am excited to share that a charity group has gotten together with a portable oxygen vendor to get me the machine that I need for more freedom.  It will be nice to be able to go to the mall, grocery shopping or walk more than 5 blocks alone without assistance from another person.  I will also be able to go to Chicago for my graduation in June or go see my siblings.

I am so grateful to God for this blessing and all the little blessings He has bestowed on me.

Expecting bad news at my doctor appointment, I guilted my husband into taking me this time and packed up the dog in her ESA regalia to go along.  After the walking test situation with the oxygen, I was not expecting the news I got.  Dr. Jackson was pleased to announce that my actual diffusion is improving.  Not sure what this means…I went to http://www.nytimes.com/health/guides/test/lung-diffusion-testing/overview.html  to figure out what he meant.  In otherwords, my lungs are showing some improvement.  It is when I move or exercise that my lungs don’t provide enough oxygen yet.  So, we will be performing these tests again in April.  He did mention that if this keeps improving, I will not need a lung transplant.  (Which I wasn’t going to do anyway!)

He was pleased to see that I am actively pursuing the yoga that Dr. Ascherman suggested.  He would like me to do the wellness program at UM, but he understands the distance thing is a barrier.  He was also ok with me starting a very restricted meal plan that is similar Paleo called Whole30 (http://whole30.com/).  It is much more stringent than Paleo for the first 30 days.  I have already started removing “bad” foods from my diet and without even trying the scale went down 3 pounds this week alone.  I won’t be able to update any further on that for a month.  That is one of the rules.  No scales for a month.

I told him about drinking the golden milk at night and lemon liver cleanse in the morning to help with the inflammation (Paleo Secret recipes from their Facebook site).  He said he couldn’t judge about herbal treatments because results are inconsistent.  He said if I felt okay and was getting results to continue.

So, I got a script for the portable oxygenator.  Do I really need it?  He said it would help me exercise more, go for longer walks, and help me with chores that I haven’t been able to do because of the exertion.  I was thinking in the back of my head that I could go to the mall alone and walk it without taking someone with me out of fear.

He was also pleased to see me lowering the steriods down to 7.5.  He wants me to spend the next month at 5.  The weight battle will be easier with less steriods.

I am allowed to travel by train, bus or plane now as long as I have the portable with me.  The reason being that the air pressure on the plane may affect me and sometimes at the terminals there are long walks between departure gates.  Now I can go to my graduation for college and maybe even see my Sisters during the summer.

I want to say this is all due to the meds.  But, you and I know it is due to the diligence of those praying for me and God responding.  This time last year I was supposed to be preparing to die.  Just look how far God has carried me!

In the mean time to take up the time I was using for studying, I am doing an Energy Balance Yoga by Rodney Yee that is broken up into 10 minute sections and I have started knitting again.  And of course, taking care of my comfort, Daisy.