Friday, April 8, 2011

Keeping the Faith

First of all I want to thank all of you who are stopping me to ask how I am doing and praying for me.  If I seem "aloof", sometimes it is all I can do to keep it together emotionally.  I am overwhelmed by your sweet prayers and comments.  THANK YOU.

Well, I am still on a downhill slide for now.  It is frustrating for me, but I am convinced that since the prednisone and ALA work in exact opposition that this will be the case until I am off my prednisone (current dose is 12.5mg).  Unfortunately, that will be a while.  My Rheumatologist here in town has given me a schedule that allows me to come of the pred at 2.5mgs per week until I am at 10mgs; then I take it down 1 mg a week until 5mg; and finally 1 mg a MONTH until off.  Not that I am counting, but that is 5 1/2 months!  This is a long time for me to feel rotten, but I am willing to walk through this "valley" of pain to have the rest of my life hopefully pain free!  My sweet friend, who has done this in Hot Springs with AMAZING results assures me that the first 3 month after starting her treatment of ALA/LDN was the WORST!  She was only on 2.5mg of pred so I obviously have a longer road ahead of me in the steroid department.  So I am in this for the long haul, if it means a walker or a wheeler chair before I can give this ALA a chance to work be it!

One decision that I had to make this week was to shut down my business temporarily until I am feeling better.  This was VERY hard for me.  Again, it was accepting limitation, but I honestly just couldn't keep up with it anymore.  I started Dinner Divas as a hobby and creative outlet for myself.  I have a passion for cooking and love helping moms and busy ladies in getting a healthy, home cooked meal on their tables.  Hence, Dinner Divas was born.  I made meals (or kits) that were healthy, and required little prep to get on the table.  I feel that gathering a family around a table is SOOO important in our busy lives and if I could make that task easier for women (or men)....then I was a happy lady.  Don't worry Fayetteville DD girls, I promise to get well soon, so that I can start cooking patient with me!

So the funny thing in all this is my stubbornness is still emerging.  I asked God multiple times for confirmation in the decision to close my business.  I felt in my heart it was the right thing to do, but waited another week to act.  Asked again for confirmation (like i needed it, He had already laid it on my heart....but I guess I need physical manifestation before I really get things in life). So after the second time I asked for confirmation....He gently (or not so gently) answered me taste buds have TOTALLY gone and everything I put in my mouth taste foul.  How can you cook for others, when you can't taste?  Literally, I had to spit out the last meal I tasted for DD.  I called my hubby in and told him that I must have gotten some bad ingredients(as I was digging through the trash reading expiration dates) and was about to throw away 10 pans full of enchiladas...when he tasted them and said they were great!!?!?! That was 2 weeks ago and I still have no taste....hmmmmm....  I am gluten free now, but still made my family eat them that night to make sure there was nothing wrong with them.  Alas, they gobbled them up!

I have asked others if this is a symptom of ALA or LDN or any of the one has had this experience.  It is just the Lord being faithful in answering me and whispering to me, "I am here, I am God, I will not leave nor forsake you...just be still in Me and I will heal you in MY time...oh and by the way...STOP COOKING!"  So I am obeying (or at least trying to).  I am trying to be very still and quiet...again the physical manifestation of my disease process at this point does not allow for much else.  Can you believe how hard headed and stubborn I am?

Finally, I wanted to share a little about my infusions.  I am now doing 4 infusions a week.  My mom came up this week to give me 4 and she is a HUGE blessing in my life.  She tricked me though.  She hooked me up to my IV (which needs about 30 minutes to drip), then refused to disconnect me until the next one.  I have to wait at least a hour and a half between infusions.  It forced me to be on the couch and sit there, while she ran around and did laundry, cooked dinner, tended to my children, etc.  I have shared it is hard for me to ask for or accept help and my sweet mother know this about her child.  She forced me into submission and accepting help...a lesson I am still getting comfortable with.

I am grateful to my "army" of family and friends helping me through this process.  I couldn't do this without my precious husband, my sweet parents and my friends supporting me daily!  LOVE YOU GUYS!