Monday, November 09, 2009

A True Test of One's Spirit


Soul-searching.

Introspection.

Meditation.

Fear.

Lots more questions.

Intermittent tears.

NO ANSWERS.

A deep breath....the countdown begins.


Despite another appointment at the world-renowned Johns Hopkins to see the best vasculitis specialist in the nation, I left with no answ
ers.

That is right...nothing.


The very long road trip down to Baltimore yielded disappointment once again. After waiting hours to see Dr. Levine, he walked in and immediately said he was about to tell me something I didn't want to hear. He cannot help me.

To take you back a bit, I had PR3 and C-ANCA titers checked again and they have continued to be elevated. Most recently on 09/10/09 the lab work showed a PR3 of 16 and a C-ANCA that was still positive. The first doctor said it was definitely not myositis, but
perhaps Wegener's...a dangerous form of vasculitis.

According to the doctors at Johns Hopkins, I have mild give-away weakness proximally, but otherwise really normal strength. I suppose that is a "good thing!" Despite the pain all summer, I went to physical therapy and swam almost every day in our heated pool.

An EMG just showed mild chronic denervation/reinnervation o
f the C7-C8 myotomes and L4-L5 myotomes consistent with cervical lumbar radiculopathy, but there was no evidence of myopathic changes. No myopathic changes...hmmm.

The Johns Hopkins "guru" continued by saying that he does not feel my findings are consistent with Wegener's granulomatosis. (Well, finally some good news!) Although I do have a positive PR3 and C-ANCA antibody, there is no evidence currently of any sinus, pulmonary I have no evidence of any systemic involvement and has no symptoms of a vasculitic disorder.


Okay...no systemic involvement. No vasculitis. Sooooo....????

They also do not feel that I fit into a clinical phenotype of myositis. (That is what the first doctor told me, yet other specialists disagreed!) Dr. Levine stated that clearly I do have some rheumatic features with a history of Raynaud's phenomenon and possibly some sicca symptoms, although it is unusual that they are only unilateral. (Now, understand this is all autoimmune lingo!)

He continued by stating that I have not had a positive ANA or a
ny of the more specific lupus antibodies, but I clearly have a positive C-ANCA and a positive PR3 antibody that has been positive several times. Thus, he does feel comfortable in terming my specific phenotype as an undifferentiated connective tissue disease, although I clearly do not fit any particular phenotype of any of their autoimmune diseases.

Get this:

In addition, the JH specialists have reinforced at this point that my symptoms are mild and seem to have improved after treatment with both IVIG and Rituximab. "If the patient did not have any underlying inflammatory disease, it would be unusual that she would respond so well to such i
mmune therapies." DUH!

So...in layman's terms...I am not imagining my disease. I am really ill. Well, we knew that already!
Conclusion? I have a persistently elevated anti-PR3 antibody of unclear significance, and my doctors report significant benefit from Rituxan infusions. Though Dr. Levine cannot fit me into any discrete systemic rheumatic disease phenotype, the presence of the antibody and my response to Rituxan is intriguing; as such he suggests that I continue this Rx, and remain vigilant for the development of any signs of WG that might develop in the future.

Per the guru...Keep on doing what I have been doing. Why did I have to make two trips to Baltimore? I guess for peace of mind. But instead they left me with more questions.


Bottom line? I am sick. I have an autoimmune disease of unspecific origin. I am one of the 15 per cent of the population who does not fit "in the box." He did say that if my blood tests/urine tests/CT scans change...that this disease could develop into Wegener's or worse. I just need to be vigilent. Which I am.

Needless to say, I have been in a state of nothingness for several months. Just existing....no real emotions. I actually had made the decision to cease any future chemotherapy treatments and just live.

Of course my close friends and family are not very happy with that decision, but it is my body and my life. Some say they support me, others are quite upset. This is the reason why I decided to take a break from writing. I needed time to just be.

Several months have gone by....summer is over and the cool crisp autumn air has enveloped the northeast. The beautiful leaves of the changing season have reached the ground and the New York Yankees have won their 27th World Series! YAY!

Goldie amidst the beautiful fall landscape at Southards Pond in Babylon.

Through it all, my strong sense of self has remained in-tact. I know what I have to do. I have to live. And in order to live, I must continue my treatments despite the fact that I hate having that damn poison running through my veins.

Enjoying a relaxing day out east in Montauk with my Mom!

The saying is true:

Defeat may test you; it need not stop you. If at first you don't succeed, try another way. For every obstacle there is a solution. Nothing in the world can take the place of persistence. The greatest mistake is giving up.


2010 will be my year. I will complete my doctorate degree and begin the next chapter of my life. Over the last few months I have been tested over and over again in many aspects of my life. But despite it all, I see a light at the end of the tunnel.

Believe it or not, the long term disability company continues to spy on me...as if I am hiding something from them. Here I am...in all my glory. Look...can you see me? I am pouring my heart out. Have you seen me trip over my own feet....drop my fork as I try to eat dinner...choke while I am drinking a cup of tea? Yes, I am ill...but I still have to try to live. And if I can get outside and do something "fun" that I will...no matter what.

Mark my words...I will defeat this disease...whatever it is...and then all of the insurance companies can kiss my ass. Am I angry? You bet I am. Not at the world....just the system. But they will not win. I WILL WIN!

As I begin my next round of chemotherapy treatments this week...I ask you to pray with me:

God, please grant me the strength to release all negative energy in my body, mind and soul to the sublimating light of your healing light within me.

For it is so, and so it is.

Amen.

6 Comments:

Anonymous Chris Kowal said...

Praying with you, girlfriend. God, how FRUSTRATING that trip must have been. Your spirit is the BEST. As I am going thru some uncertain times in my next chapter, I will think of you. Strength in numbers, right? Love you Bev-that was a cute pic in Montauk...Chris

12:38 PM  
Blogger Sharon said...

you're damn straight you will kick its ass. i haven't come all this way to hear you say you quit. besides we have a mini-golf rematch. i want my stinkin' trophy back lady............fair and square!!
love you kid, always have, always will. 33 years and counting and won't stop till we hit 75. that would make us 93!!
love, sharon

4:21 PM  
Blogger Andy said...

I can't possibly comprehend the depths of despair that you have been experiencing but I most definitely can marvel at your strength and the quality of character that you continue to show us. You set an example for all of us, and I am happy to know you.

Andy

2:16 PM  
Anonymous Jessie Matei said...

Continue to fight and celebrate Life and who you are in this world. Continue to do things that affirm your spirit and bring you joy. You are blessed to have so many people around you that love you. Feel the love and may it give you strength and courage...Peace, Cousin Jess

3:31 AM  
Anonymous Anonymous said...

I was just looking for some patient experiences with Rituxin and came across your blog. I usually wouldn't leave a comment but I you are so beautiful and articulate I wanted to wish you well and tell you that I prayed for you - even though I don't pray very often.

I was diagnosed with RA at 24 and there has never been any doubt. I am 45 now and we are running out of stuff to throw at it and looking at Rituxin.

Although I don't have the frustration of a mystery diagnosis (which sounds like hell) I do feel frustrated. I feel like we are going about this all wrong. And of course I hate that the "cure" is always something we would normally consider toxic - like Methotrexate or Rituxin.

I wish you love. I wish you well. I wish they would figure out a humane and elegant way to get our bodies back to the way God surely meant them to be.

Until then I will continue my regimen of extremely hot baths, narcotics when I think I need them and watching trashy TV while I do my exercises. Things I never allowed myself to do when I was running an advertising agency - back in my workaholic past.

6:06 PM  
Blogger Cheryl said...

Took me 27 yrs to get a dx of mtcd...*rolleyes* Doctors are such amazing investigators..NOT!
Until the blood work showed something, it was one fight after another with them. Sad really, to be sick and have to argue with doctors.

5:59 PM  

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