Thursday, August 4, 2011

Still here!

Well, I realize that my last blog entry was April 8th-ish, but to be quite honest these last couple of months have been the worst of my life..and I don't like to complain, so it just wasn't worth writing about.  But now, I have a little good news and thought I would share!

Since March when I headed out to New Mexico to  Dr. Berkson, I have experienced almost every symptom imaginable (it seems).  My lab values have been all over the place and have had many doctors appointments and tests from my team here in Fayetteville.  Some days I felt like I just wanted to crawl under a rock (but was too sore the think much further). 

Apparently, these symptoms were part of my withdrawal from the prednisone and everything else I have been on in the past and my body was just plain angry.  Still, I have been trying to keep to "the plan" of getting off all my traditional meds and just maintaining the Low Dose Naltrexone and the Alpha Lipoic Acid infusions (4 every other week).  While on low dose Naltrexone you can not take ANY pain killers with codeine or narcotics, so even on my worst days...I just had to tough it out.  I really began to think it was never going to work and thought many times about pursuing another biologic agent (drugs that I have been on before that are toxic to your body and given via IV or self injectable).  ALL of them come with black box warnings to include dementia, cancer and other awful "side effects"

My lowest point was over 4th of July when I went to my parents house for the holiday.  My parents couldn't believe what little mobility I had (specifically with stairs and getting up and down out of chairs).  I went out to New Mexico on 40mgs of prednisone a day and over the 4th I had weaned myself down to 4mgs a day...but at a cost (not be able to move).  My dad suggested a round of steroid shots in a couple of larger joints to see if it would help me achieve some temporary (and maybe even more long term) relief.  He injected my left knee and right wrist.  I had a Bakers Cyst in the back of my left knee he aspirated and then injected the knee with kenelog.  I could not close my hands in a fist and the closest I could come was making a "C" with both he injected my right wrist on both sides.  I limped out of the office and rested the rest of the day.

The next day, I was like a new person!  I could walk, do stairs, make a fist with ease!!!!  I was so excited to have somewhat of a life back.  I knew that this was temporary, but I was going to take it after the 4 months I had experienced. 

Well, as expected I started to feel a little sore 10 days later and had one kinda bad day, but then it stopped.  I have hit a plateau and think that the LDN (low dose naltrexone and ALA) are finally doing their thing.  I strive for much better inflammation control, but it is MUCH better than before.  My rheumy's office called today and reported that my white cell count is finally close to normal 11,500ish.  I have been around 18,000-19,000 for 4 months.  I don't feel like i have an infection of any was just inflammation.  I am hoping that this lab value correlates to how I am feeling and will continue to go down along with my inflammation. I am still humbled by the fact that i struggle with such simple tasks that I used to perform with ease, but feel blessed to be able to just function in a reasonable state.  I am trying to take it easy on my body and continue to let the healing process take place. 

I am heading out to New Mexico for my next check up in mid August to see if  Dr. B has any other suggestions to further reduce my inflammation. 

So many of you have asked about me and how I am feeling and I wanted to make sure that i updated those of you who have been interested in my progress.  I praise God for the relief He has given me through this treatment and pray that He will only continue to heal my body.  Your prayers have encouraged me and supported me throughout these last few months.  I cling to the fact that wherever I go from here is His Divine Plan for me and that He gives me the strength to put one foot in front of the other every day(healthy or not).  May His Glory be shown through trials we face and may He use me through mine! the way...I am now on 3mgs of prednisone a day (not to mention 25lbs lighter than March)....WHOO HOO!

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!

Tuesday, March 29, 2011

Keepin' on keepin' on...

Sorry I haven't been very good about updates lately, but I have returned to life as usual...which is busy!  It is amazing how much more time you have away from home with 2 to 3 extra people helping you with everyday tasks...THANKS to Gaga, Susu and my precious hubby for all the help.  I LOVE YOU!

Well, so back in Fayetteville...I am trying to get my days under control.  I have run into many of you at schools, church, grocery, etc and you have asked how I am doing.  I am doing...not so great, but I still have GREAT expectations.  I knew this was going to be a long road and although I want immediate results they are not coming.  I think that the hardest thing for me is what I like to call the "unknown" factor.  To be quite honest (like I don't do that already), I don't now when this ALA is going to kick in, and it is that "unknown" that makes my days hard.  I long for the day that I can wake up and have a spring in my step instead of a limp.  Today was an especially bad day, and I think it is because I am trying to "get back in the swing" of things here at home and my body is trying to remember what that is like. 

Like I have said before...I KNOW THIS IS GOING TO WORK!  The prednisone is slowing the process (down to 17mgs).  I have had concerns about how my body would react to coming off the prednisone this quickly without the daily infusions, and I think my fears are being realized.  My last infusion was on Sunday and I am not feeling as good today as then.  I was going to wait for 2 weeks to get my next infusion, but we are going to move that up to this weekend.  Dr. Berkson suggested more frequent infusions here at the beginning, so I probably need to follow the Doctor's orders.

So....I have decided to be optimistic and make a list of a few things that I look forward to when I  kick this RA in the rear:
1) wearing my wedding ring again...i just love what it stands for
2)I have promised my kids I am going to buy a bike to ride with them (they are too fast for me on foot)
3) Turning a doorknob without hesitation or anticipation of pain
4) Putting on my own tennis shoes. 
5) losing 20lbs of prednisone weight
6) wearing my watch (I have put 4 links in it and how now given up)
7) sleeping in another position then flat on my back and sleeping through the night
8) walking barefoot (can I get an AMEN Liz?)
9) picking up my sweet baby when he says "carry me, mommy"
10) Giving God the Glory for my healing in His perfect time through this ALA/LDN

My posts will be less frequent, but I will update as needed!  Thanks for continuing to pray and may God reveal His timing in His perfect way and that I can be open to learning every day from this process....

Friday, March 25, 2011


So here I arrive at my 18th infusion in 2 weeks.  I have four more to go and I will take a short break and resume one of two options.  Either....two infusions twice a week; or 1 week of infusions per month.  Dr. Berkson would prefer the 2 infusions a week, but logistically, I don't know if I can swing that living 4 hours away....sooo we are going to see how my first week home in Fayetteville goes and gage whether or not I can make it at least two weeks on this lower prednisone level (still at 20mgs) without daily infusions.  If not, I am going to have LOTS of windshield time.  I am willing to do WHATEVER it takes with this ALA to make me feel better.

So a big box arrived today...MY SUPPLEMENTS.  Dr Berkson is not just about treating a patients' condition with ALA/LDN, but a general overhaul of your health and well being.  I have never been a big fan of supplements because I never know which one to take, if what i am taking is beneficial, if the product is of quality, etc, etc, etc.  Basically...I saw them as me having really expensive urine.  I usually stand in the aisle at the pharmacy spending about an hour reading the labels, looking at the price and usually pick one based on the packaging...I know, not very educated, right?

Dr. Berkson has changed that for me.  Since there is no regulation on the manufacturing of supplements, there is legitimate concern about what you are actually getting.  Dr. B has toured each of the manufacturers facilities that he recommends so I have a greater faith in taking the vitamins and minerals he suggests and appreciate that he has taken the time to overcome this hurdle for me!  I am going to give you the list of supplements he suggested for me....this is not a recommendation for you to take what I am taking, but I thought that if some of you are already taking some on my list you might change the brand knowing that it comes from a reliable source.

The Big One (Multivitamin with Iron)  from Metabolic Maintenance (MM)
Alpha Lipoic Acid (MM or Biotech)
B Complex (MM, Biotech or Carlson)
Selenium, (MM, Carlson)
Fish Oils - Omega 3's (Nordic Naturals)
Rebuild ( calcium from MM)
Vitamin D (Carlson or MM)
Zyflamend ( New Chapter)
Curcumin ( Biotech)

Hope that helps some of you who stand in those grocery store/pharmacy aisles and stress over what to choose.  I now am reminded that price does not reflect quality, packaging although pretty is pretty for a reason (for people like me) and ingredients are important if you don't want subscribe to expensive pee!

I am feeling about the same today as I did before I left for New Mexico.  This is encouraging to me because I am still coming off my prednisone and not feeling any worse.  I am frustrated by the fact that I have to come of the pred SOOOO slowly and am trying to figure out how fast I can actually taper.  I can tell it is inhibiting my progress on my new treatment.  I am trying to be patient, but can't wait to be the vibrant and active wife, mother, daughter that I once was...

Love you guys!

Wednesday, March 23, 2011


We finally got the Alpha Lipoic Acid yesterday (Tues).  I received two infusions yesterday and one this morning..we are back on track.  9 infusions to go...prednisone down to 20mg.  My kids have LOTS of questions about the "hole" in mommy's hand, the "water" and how fast it is dripping...they touch EVERYTHING which drives Susu (my mom) crazy because it is contaminating her sterile field.  They are so sweet to gently hold my fingers and kiss the IV tubing....again...driving susu batty.  Oh, and Taylor (2 year old) announced this morning that he "needed that needle in his arm... 'i sick too'"  We think he has a raisin stuck up his nose, so we need to tend to that first, then we will see about a needle in his arm!

On a different note, I would like to thank all of you for supporting me through prayer.  I cannot tell you how encouraging it is to me during this time to know that the power of prayer is at work on my behalf.  We know He will hear and answer our prayers (Psalm 86:7).

If you know me at all, the "limitations" my disease process has put on me is extremely humbling.  I am one who does not like to seek help and certainly don't like to ask for it.  My husband caught me tying my shoes with my teeth not too long ago and now makes sure they are tied every morning before he parents have recently taken over that role in his absence while on a business trip.  How humbling is that?  They thought they had that skilled covered when I was 5, right?  Gripping is an issue for me.  I use my hands pretty darn well, heck, I own a food business (where I am the only employee) which I consider my "therapy" because it feels good to move my hangs around to limber them up, but have lost strength in my grip.  I love it though and look forward to cooking in the future...pain free!

Another example...sitting in a dad and I saw a movie while in New Mexico and when it was over we both moaned as we ascended from our seats.  He said, "Don't you get so stiff sitting in movies?"  I replied..."Yes I do!  Uh, Dad, I don't mean you any disrespect, but you are also 35 years older than me."  Again...humbling to feel 70!  Learning to ask and accepting help is a skill I am working on.

I have never been angry at God for my RA, but I have asked the question....Why me?  I don't have the answer to that question yet, but I am learning more and more everyday during this period. We are given "trials" in our lives to teach us in areas we fall short and to allow us to grow closer to our Creator.  The opportunities He uses vary, but they nonetheless get our attention.

First, I am a bit of a "controller".  I like to think that I have it all figured out and forget to ask God what He thinks of my wonderful plans.  I don't think that God wants me to live in pain, however I think He is using my disease process as a wake up call  to remind me of HIS plan for me.  (I must be REALLY stubborn for Him to bring me to this place, I guess I better sit up and take notice).  I need to listen and obey to His plan for me.

Second, I do believe He is using me during this trial to encourage others.  My desire is to bring Him glory and point to Him in all that I do.  He has given me a positive attitude and a personality that is "upbeat", so I tend to wear a smile throughout just about anything, including pain.  I don't mean to pat myself on the back when I write that because I want to give God the credit. So many people have approached me in the past couple of months to ask me if everything is ok.  I have tried to not bring attention to my RA so many didn't know I struggled with it, but nothing like 40mg of prednisone, 20 lbs of weight gain and a glorious moon shaped face to bring out those gentle questions...he he he.   However, people have told me during these last couple of months that they are encouraged by my attitude regarding my health and it has helped them with health situations they are faced is my opportunity to point to HIM.  He is the only reason I could have been so positive.

Off the record...I have been a total basket case these last two weeks, and I am so glad He has taken me out of the paths of those needing encouragement (I think He has, but He is so awesome and knows no limits so I guess He could be using me even now in my lowest moments).  I cry about every 10 minutes, which is SOOOO not me, I am usually rock solid when it come to emotion...which makes me laugh and confused at the same time.   I have new neighbors in my subdivision and I have passed their house about a dozen times before I left for New Mexico intending to stop and introduce myself, but every time I drove by....i was crying...didn't want them to think that they moved in next to the crazy, hysterical lady down the street. When I was home that one night before coming to Hot Springs, I ran to my other neighbor, who knows my situation, threw money at her and asked her to go buy them a gift certificate or something from her aloof neighbors.    I am blaming it on the prednisone....I blame EVERYTHING on the prednisone these days!

So I have finally come to the realization that my RA is in fact a blessing.  I am blessed because I can encourage others, I am blessed with a God who will not leave nor forsake me, I am blessed with the greatest family support system, and blessed with friends who care enough to pray for my healing.

Laura Story has a new song out that has great meaning during this time in my life.  I have included the lyrics below if you are not familiar with the song.  The blessings of my RA have definitely come as raindrops and the tears are ubiquitous as well as sleepless nights....all mercies in disguise as they lead me closer to the arms of my Father in Heaven!  AMEN!

We pray for blessings, We pray for peace
Comfort for family, Protection while we sleep
We pray for healing, For prosperity
We pray for your mighty hand to ease all suffering

And all the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if your blessings come thru raindrops
What if your healing comes thru tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise?

We pray for wisdom, Your voice to hear
And we cry in anger when we cannot feel you near
And we doubt your goodness, We doubt your love
As if every promise from your Word is not enough

And all the while, You hear each desperate plea
And long that we’d have faith to believe

Cause what if your blessings come thru raindrops
What if your healing comes tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise?

When friends betray us
When darkness seems to win, we know
That pain reminds this hearts,
That this is not, this is not our home…..

Cause what if your blessings come thru raindrops
What if your healing comes tears
What if a thousand sleepless nights are what it takes to know You’re near

What if my greatest disappointments,
or the aching of this life,
Is the revealing of a greater thirst this world can’t satisfy.
What if trials of this life,
The rain, the storms, the hardest nights
Are your mercies in disguise?

Monday, March 21, 2011

Ready, Set....uh oh!

Well, here I am in my super new swanky infusion site.  I have the best infusion nurse in the world who treats me as her own (bc she is my CRNA mom) a board certified surgeon on site to tend to my emergency needs (which I haven't had any), a comfy couch to relax on while I watch my children play Geo Trax and build Lego houses and spaceships....unfortunately....we have no drug!  My dad prescribed and ordered it last Tuesday and it was to be shipped to his office by Friday.  When we arrived in last night my dad ran up to pick up the Alpha Lipoic Acid from his office, but it was not there.  sniff, sniff

We have called the company and they are overnighting some tonight, but sadly I am missing two days of infusions.  That is ok, because I am going to take this opportunity to explain how I was driven to go down this road since some of you have asked....

As I have said before, I was diagnosed at 21(I am 34 now) and immediately started on what was considered the "gold" standard of treatment at that time:  plaquenil, voltaren, alzulfidine, prednisone and methotrexate.  I was diagnosed fairly quickly because these "lupus" type diseases run in my family.  My sister had already been diagnosed with dermatomyositis, and my paternal aunt with polymyositis. With this information, the team at Emory decided it was the best treatment.  I felt better and actually continued on this treatment for many years (except I stopped the voltaren because I think it made me feel a little crazy, however it was hard to tell which of those was doing that...probably the prednisone, but again, who knows).  As we moved, I moved my treatment to "BIG" treatment centers.  The next place I was treated was Duke University.  I mention my treatment centers, just because I believed that the most current treatment and latest breaking disease news would be available to me and I followed their suggestions to a T.

I continued down this road for many years....THEN...I had a baby!  This seemed to change EVERYTHING for me healthwise.  I was always fine during my pregnancies, but it was very hard for me to recover postpartum.  Nursing was something I wanted to provide for my babies, but if I nursed them...I couldn't start any other treatment plan for myself....I could be on prednisone, and prednisone alone.  My next rheumy suggested the new biologics.  Now, I was a drug rep for Merck for years and have a great respect for the pharmaceutical agents we have available.  The science and technology behind them is quite amazing!  I was ON BOARD for the biologic adventure.

The first agents I tried were Enbrel and Humira.  I gave each 6 months to work and neither worked for me. Moved to Remicade.  Remicade was the drug that I say "changed my life'...I never felt better and was a new person....that was the first time I took it.  I took it for 1 year before deciding to have another baby.  After, my second was RA worsened again.  My new rheumy (can you tell I have moved alot) didn't want me to start back on Remicade because of the risk of an allergic reaction.  So I decided on Orencia.  It worked ok, but I eventually had to have my foot operated on to scrape out the inflammation around my ankle and repair torn tendons.  My doc then agreed that maybe Orencia wasn't providing enough control....then came Actemra!  Didn't work....I finally had had it and returned my conversation to sweet, dear Remicade that worked so well.  I was SOOOOO excited,  my first infusion was a breeze and I actually felt a little better, got to my second infusion and BOOM...anaphylaxis!  They had premedicated me to prevent this, they stopped the drip, tried to let me recover...but once they restarted it...they decided it was too dangerous and I couldn't get it.  Not breathing=NOT FUN!  I was heart broken.  Then I arrived at Rituxan....You know the rest.

After reading about ALA/LDN and patient experiences, I figured I had to try it.  You know the definition of insanity, don't you....trying the same thing over and over and expecting different results.  That is what I was doing.  The big Pharma drugs are great, but the only problem is that our bodies are too smart for them.  We block one pathway of inflammation and our diseases get better, but eventually they find another pathway to use.  On top of that, our immune systems are suppressed and we can't fight anything.  The ALA/LDN promotes a healthy immune system that upregulates and actually helps us FIGHT the matter the pathway it chooses.  I may or may not have a response to this treatment but it TOTALLY make sense.  I want to FIGHT this...make my immune system as strong as possible!  No one can say that I haven't given the other route a fair shot! I am!

I don't think that I will see the true power of my ALA/LDN treatment until I am off my immunosuppressants.  The Cellcept and Prednisone are suppressing, while the ALA/LDN is upregulating so they are working against each other right now.  I have stopped the Cellcept, but I can't simply stop my prednisone.  I have to come off it slowly.  I am having the experience in the mornings when I take my prednisone where I actually feel worse after I take it.  When I get up, I am obviously stiff, but about 30min to an hour after I take my prednisone my knuckles throb like they never have before, and I have a general sense of feeling worse.  This does pass, but I think what i am experiencing is the two agents (prednisone/ALA) battling each other. 

Hopefully I can write tomorrow about getting a infusion!

Saturday, March 19, 2011

My Sweet Kids

Well, I have finally made it home to Fayetteville!  My hubby and kids were here to welcome me with lots of hugs and kisses.  :-)

Last night, I was telling the boys good night on the phone and Adam finally asked, "Mama, where are you?".  I think it was the first time he actually realized I was gone!  They had such a good time in Montana, no one knew Mama was gone....he he he   I am pretty sneaky!

Anyway, when we drive up in my Dad's car (who they call Gaga) they got so excited....sadly, not because I was in it.  My kids are literally obsessed with my dad's car.  They LOVE that it has a "movie" in it (our car does too, but they just don't get to watch it very often).  Gaga has VERY different rules and they get to watch movies to their hearts content when they are in his car.  So I think that they think that I opted out of skiing in Montana to ride around with Gaga and watch movies for the week.  They kept asking me what movies I watched.  Kinda cute. 

Well, I didn't get any infusions today, but will go to Hot Springs tomorrow to start my last 6 days of infusions.  That means I have 12 infusions left for the loading period.  I am feeling not as good today as yesterday, but expect to have good and bad days here at the beginning.  To have a few good days littered in would be an improvement from where I have been.  Then, maybe there will be a few more good days, a few more and a few more....

The response time varies from patient to patient.  From the patients I spoke to with RA it seems to be anywhere from the first day to 3 months.  One lady I met had a response the very FIRST infusion.  The other patient from Hot Springs had a response at 3 months or so.  It seems to be dependent on how much crap (excuse me...toxins) you have in your body when you arrive.  The lady who had a response the first infusion had stopped EVERYTHING 3 years before ALA and had decided to just live in pain.  Her hands were frozen closed and she was shuffling around and looking into a wheelchair.  Since she had no toxins in her system, she seemed to response very quickly.   She now walks fine (and dances), and has full use of BOTH of her hands.  She receives treatment every 2 months or so.  She is 73 and looks better than ME!

The other patient from HS, had just completed chemotherapy from a lymphoma she received from taking Enbrel...ironically the treatment for her lymphoma was Rituxan (the drug that I was to be on before I started ALA).  After she received Rituxan for her lymphoma...she headed to Dr. Berkson and ALA/LDN.  It took 3-4 months for her to see a response due to the Rituxan and Enbrel working their way out!  She is now a new woman with very few limitations physically.  She has amazing energy and no inflammation to speak of. 

These responses are exciting and encouraging to me!