Inspiration.... Where have you gone?

It has been awhile since I have posted anything on the blog. This is due to the fact that this blog springs from inspiration, and if treatment has done anything to me recently, it has left me feeling uninspired. Over the past month I feel like I have been merely in "survival" mode, struggling hard to keep up with the world around me. I would say that typically I am an upbeat and easy-going person, but lately I feel tired and worn down. Ironically at the same time as being fatigued I am often completely wired...like bouncing off the ceiling...wired and sleep at night is elusive. I had about three weeks of what seemed like non-stop nausea, however thankfully this seems to be passing! One of the side-effects of treatment is that it pushes your white blood cells extremely low, making you susceptible to other illnesses and infection. I ended up with a whopping infection in my mouth that required emergency dental care and antibiotics.  Anyways....enough whining from me......

On a much more uplifting note.....I have been riding my bike a little (on the trainer). I can spend up to 25 minutes at a time, but typically it is closer to 10.....but still this is something. I am hoping that soon I will begin to be able to spend longer on the bike. I need to get to the point where I am capable of riding 15 miles in a day again pretty soon in order to be prepared for the Fall Ride to Myrtle Beach. I have received a bunch of inquiries from others who want to join us...which is awesome!

Along this line I had 300 silicone bracelets made that are red and yellow and say "Stop Hepatitis C !" I am hoping that through donations I can generate some funds so that the bike ride can really raise awareness in the South Carolina Lowcountry. Send me an email with your address if you would like information about getting one (or more) of the bracelets. Please take this opportunity to learn more about Hepatitis C and to help to educate others.

In closing this post I would like to thank all my friends and family for your love and support during what has felt like one of the darkest times of my life. Even now I feel so blessed to have a deep faith in God and a belief that even the dark times in our lives contain great meaning and opportunities for spiritual growth. I am grateful that I have a source of inspiration which provides me a place to turn to sort out these trying times.


"As to your question concerning the meaning of physical suffering and its relation to mental and spiritual healing. Physical pain is a necessary accompaniment of all human existence, and as such is unavoidable. As long as there will be life on earth, there will be also suffering, in various forms and degrees. But suffering, although an inescapable reality, can nevertheless be utilized as a means for the attainment of happiness. This is the interpretation given to it by all the prophets and saints who, in the midst of severe tests and trials, felt happy and joyous and experienced what is best and holiest in life. Suffering is both a reminder and a guide. It stimulates us to better adapt ourselves to our environmental conditions, and thus leads the way to self- improvement. In every suffering one can find a meaning and a wisdom. But it is not always easy to find the secret of that wisdom. It is sometimes only when all our suffering has passed that we become aware of its usefulness. What man considers to be evil turns often to be a cause of infinite blessings."

-Shoghi Effendi

The 70 Mile Road Ahead... will you be on it?

All praise be to Thee, O my God, for the things Thou didst ordain for me through Thy decree and by the power of Thy sovereignty. I beseech Thee that Thou wilt fortify both myself and them that love me in our love for Thee, and wilt keep us firm in Thy Cause. I swear by Thy might! O my God! Thy servant's shame is to be shut out as by a veil from Thee, and his glory is to know Thee. Armed with the power of Thy name nothing can ever hurt me, and with Thy love in my heart all the world's afflictions can in no wise alarm me.

    -Baha'u'llah

One of the most curious aspects of taking Interferon and Ribavirin therapy are the vivid dreams that many people experience. On many nights these dreams are so real feeling that they leave me laying awake trying to make sense of them. I have always tried to ignore my dreams as I find them too confusing to think about...conscious living is perplexing enough without trying to comprehend the time I spend sleeping! Some of my recent dreams have been particularly confusing with scenes such as me sledding in deep snow down hilly streets of San Francisco. In other dreams friends who have passed away over the last couple decades have visited me. In one fabulous dream I was dancing to the Grateful Dead....Jerry was still alive and singing like the old days! One dream stands out from all the rest in that it seemed to provide me with a plan to go forward from where I currently stand.

About two weeks ago I awoke and told Lauretta that I had a dream that I had ridden my bicycle from our home to my doctor's office so that I could tell them "thank you" for the kindness and encouragement that they have given to me as I progress through treatment. I filed the dream under "nice ideas" thinking that I needed to make sure to say "thank you", but dismissing the other part. But this dream is persistent and has forced its way back into my dreams again and now it has entered the world of full consciousness.

One of the most obvious signs that I was slowly growing  sick was that the love that I once had for long-distance cycling gradually faded until I no longer rode my bike at all. I genuinely enjoyed the science of long-distance cycling as you try to strike that perfect balance between caloric intake and energy output...allowing you to ride as far as possible as long as the daylight lasts. Hepatitis C was gradually robbing me of the joys of my life and making some aspects more challenging, and I sat by confused and unaware as the virus continued to launch its assault on my body. The other day I awoke knowing that I needed to "re-file" my bicycle dream....from"nice idea" to "plan for recovery".I will take this ride...I have to. In order to be able to complete such a ride I need to begin training. Although I suspect that this may pose some challenges related to the long-term effects of interferon and Ribavirin, I know that is exactly what I need at this point in my recovery.

On September 14, 2010 I will cycle from Hemingway SC to Myrtle Beach SC so that I can thank my doctor and nurse and also so that I can officially begin my efforts to increase public awareness of the Hepatitis C epidemic. I would like to invite everyone to join me on my ride as I make my "dream" a "reality". Already there are a few of us planning to make the 70-mile trek. September 14th 2010 will be the first anniversary of  the start of my medical treatment to kill the Hepatitis C virus within my body, and will be three weeks after I complete treatment. I started treatment hoping to merely be able to endure and cope with it....simply to live through it. Today I am resetting my goal. I intend to complete treatment in better shape than when I started. I believe that with your continued prayers and encouragement this will be possible. I have realized that my faith, friends and family are a source of strength that can carry me through this. Remember...Love is Strong!


Please consider joining us on September 14th as we have a great time and educate others about HCV.


Keeping the Faith....killing the virus!
With love and gratitude,
Rus

Whatever You Are Doing....Keep Doing It!"

There are two ways of healing sickness, material means and spiritual means. The first is by the use of remedies, of medicines; the second consists in praying to God and in turning to Him. Both means should be used and practiced.

Illness caused by physical accident should be treated with medical remedies; those which are due to spiritual causes disappear through spiritual means. Thus an illness caused by affliction, fear, nervous impressions, will be healed by spiritual rather than by physical treatment. Hence, both kinds of remedies should be considered. Moreover, they are not contradictory, and thou shouldst accept the physical remedies as coming from the mercy and favor of God, who hath revealed and made manifest medical science so that His servants may profit from this kind of treatment also. Thou shouldst give equal attention to spiritual treatments, for they produce marvelous effects.

    Abdu'l-Baha, Baha'i World Faith  p. 375

On Monday October 19th 2009 I dragged myself out of bed and went to the local hospital's lab to have another round of bloodwork done. This has become a standard part of many of my weeks as my doctor watches the response that my body is having to the interferon and ribavirin, making certain that my blood counts (particularly my white blood cells, red blood cells and platelets) do not plunge dangerously low. I am learning more about these numbers then I ever did in the 2 years of anatomy and physiology courses that I took. When my rbc's initially began to drop I felt breathless and desperately fatigued......"just let me lay here for awhile" was my automatic response for a couple days. Fortunately Lauretta insisted that I get up and walk laps around the yard. One day when she stopped by my office she noted that I looked tired and dragged me out to walk laps around the cemetery behind my office...the irony of which did not escape me. What I quickly discovered is that even this mild exercise rapidly increased my stamina and energy level! So I started trying to bike a little....mostly using my bike on the stationary trainer.....more exercise...more energy! ....Go Rus! I would try to tell myself as often as possible!

In an effort to strengthen the chemotherapy I write inspirational messages on the syringes and pill boxes, often Sacred Verses or private messages of encouragement that some of you have said to me. Every drop of medicine that enters my body is blessed and welcomed in (which is hard when you know that it is going to make you throw up, feel dizzy, shiver and ache). These responses were the only way that I felt I could possibly endure the year long treatment that lay ahead of me. I needed to somehow be able to welcome and embrace these chemicals that felt like they were killing me?!

Another thing that I discovered is that although I had initially considered keeping this whole thing secret and telling only my immediate family, doing so would mean that I would be depriving myself of two very important sources of healing.....the healing power of prayers from as many of my friends and family as possible and the spiritual happiness that service brings to our souls when we serve others; in this case "serving" by trying to educate as many people as possible about the Hepatitis C virus. What I have discovered from this is that every day I have opportunities to serve others by providing encouragement and education to people who are just being diagnosed and their family members. With any medical diagnosis there are many questions and with one which is potentially life threatening there are even more. Helping others start to find answers is healing for me. In addition I have also been able to benefit from a growing number of people praying for my healing. It feels like each day I receive an increasing dose of prayers lifting me up and soothing my soul! Some of you I know have been praying hard!! I can feel it, like I have never felt before!!!

Anyways...as I often do....I have once again taken the winding road to the main point of this blog post....

Today at 3:45PM I got a call from my doctor's office telling me that they had received the lab results from Monday's bloodwork. I suspected that they must be calling to tell me bad news, as my next appointment is still 10 days away, not thinking that in addition to all the routine bloodwork that I have done every two weeks, they also had run a PCR assay test to determine what they refer to as my viral load, the amount of active virus in my blood (this test generally takes two weeks to get back so I was sure that they would not be reporting on it). My viral load had been determined to be 15,063,000 i/u prior to treatment, a level which is categorized as "very high" (the higher the viral load, the less likely it is that a person will respond to treatment...so this number was against me).

So, when I heard Denise's voice, the nurse from my doctor's office, I instantly tensed up and prepared for the worse....afraid that I was going to need to change my medications or stop treatment. I was not prepared for what she told me.

"Rus, Melissa (my doctor) wanted me to call you and let you know that we just got back your viral load test and after 4 weeks of treatment your viral load is 2500 i/u. Your response to the medicine has been unbelievable! She also wanted me to tell you that whatever you are doing....keep doing it!"

This means that I seem to fall into the rare category of "rapid responders" which is a very good thing!!!! It does not mean that I am "out of the woods" or that the virus has been eliminated from my body, but it does mean that I am positioned as favorably as I could possibly be at this time to eventually be cured of this virus!!!! Being able to beat the virus means that I need to continue to respond favorably to treatment and that my body continues to be able to tolerate it for the next 43 weeks.

A friend of mine who has supported hundreds of people who are on this treatment and who has herself been through treatment three times before being able to beat the virus, said "Rus, you have been granted a miracle! This is a genuine miracle from God to you!" I too believe that this is a miracle from God, but I also believe that you all, or as they say in my hometown, "y'all" are a big part of this miracle...y'alls prayers and encouragement have made this happen!

So my dear friends and family, following in the example of my doctor...I would like to humbly and with deep gratitude ask that, "whatever you are doing....keep doing it!" (and I'll add "Please!")

With deep love and profound gratitude,

Rus

 Keeping the Faith...Killing the Virus!

A Shout Out to My Girl!

And when He desired to manifest grace and beneficence to men, and to set the world in order, He revealed observances and created laws; among them He established the law of marriage, made it as a fortress for well-being and salvation, and enjoined it upon us in that which was sent down out of the heaven of sanctity in His Most Holy Book. He saith, great is His glory: "Marry, O people, that from you may appear he who will remember Me amongst My servants; this is one of My commandments unto you; obey it as an assistance to yourselves."

   Baha'u'llah

In the Baha'i Faith one of the fundamental principles is that marriage can be likened to a "fortress for well-being". While I have heard this for many years, and have sought to understand its meaning over the past several months it has become very clear what this means...at least to me. While I named this blog Russoul's Journey, it is much more accurate to describe it as a journey of a family or community. We are all journeying together, interwoven and interdependent in ways in which we can never fully understand. I feel this a lot lately.. often in places and at times which I do not expect. The power of unity is amazingly strong!

Lately this power or strength has been most evident to me within my own home, as I feel the benefit of my "fortress for well-being". Experiencing the challenges and hardships that life presents us is often not easy. It can be even more difficult when these challenges are visited upon those people who we love dearly. People who are so close to us that we want to do anything that we can to alleviate their hardships, and yet because of reality, we feel almost powerless because there is so little that it seems that we can do. And so it is ironic that although I am currently undergoing chemotherapy, I suspect that it may actually be harder on my dear wife, Lauretta. It is to her that I turn each week when I do another treatment and need to be reminded that although this is "hard", it is "good". She reminds me that the interferon and ribavirin that I am taking are "my army of light"...killing the virus that has been attacking my body. She calls me up and reminds me to drink more water and eat lunch or dinner. And most importantly she reminds me that I am loved! But I know that being there for me all the time (not to mention our kids) is not easy and it is tiring.

I have always felt unbelievably blessed to not only have met Lauretta, but to be married to her! I often wonder if those around me feel as blessed and lucky to have married their best friend! Somehow I suspect that this is often the case when people get married, but that they forget that building a fortress takes a long term commitment and that it is not easy. I believe that some of the stresses that people cite as destroying their marriage, could actually, with prayer and nurturing strengthen their marriage. I am not trying to claim to be an expert or to think that this is easy....but my current experience feels like it is strengthening my marriage in spite of the stress that it is causing.

One of the many blessings that Hepatitis C has brought to me is that it has reminded me of how much in love I am and to experience that love over and over throughout the day! It has also allowed me to feel what it is like to live within a "fortress for well-being", a marriage which keeps me safe in times of tests. I feel that being sick has strengthened our fortress and my personal faith in God. I pray that my dear wife is also having a similar experience and that she is feeling loved and nurtured throughout this. I try to share with Lauretta how much I appreciate her love and support...but I don't really know how......How do you really let someone know how much you love and value them? Do we take enough time to pause and let each other know?

I once called her and told her that I had broken down and then put goofy signs along the highway for a couple miles leading up to me, standing there with flowers and a sign telling her Happy Anniversary!

....anyways I just wanted to give a shout out to my BFF (best friend forever) and let her know that I couldn't do this without her! Lauretta, I Love You!!! It has been a long time that we have been traveling together and each year gets better! Thanks for all you are doing and for your committment and support along the journey!

This is Not About Me.....

Over the past few days I have been feeling a little worn down mentally by the treatment. The thought of a year dominated by pills and shots is a little maddening! It is a short step from there to feeling sorry for myself....doubting that I can do this......and then arriving at the most ridiculous of all rhetorical questions...."Why me?"

Once putting that question out into the air it is hard not to start moving down the path of "what does God have against me" or "what did I do to deserve this?" Today while praying I believe that God answered all these questions for me! It came to in the form of the picture below.

I believe that I have been blessed with the opportunity to make a difference in this world...even if it is a very small one. Over the past two decades God has given me everything that  I need to be a survivor. At the age of 22 I was desperate and faithless, with my spirit crushed from addictions to drugs and alcohol. Those of you who knew me then will no doubt remember how far down the slope I had slid. And yet with 1 prayer, 1 plea to God uttered in desperation moments after I was admitted to Binghamton General Hospital's detox unit, I was given a complete and total reprieve! This is the miracle of faith.Today as I edited this photo suddenly it clicked that this is not about me.

You may remember that in 2000 I began cycling as a means of raising awareness for HIV, a horrible virus which I felt was spread primarily by fear and stigma. Of course I realize that this is not really how it is spread...but this is what has allowed it to spread with relatively little resistance, as people felt that it "was not their problem". I did not know why at the time, but I was deeply moved by the hope and strength that I encountered in many of the people that I met who were HIV positive. I drew strength from watching the HIV positive cyclists, take fistfuls of pills and then get on a bike and ride for 100 miles. I had no idea that my life was running a parallel course. I took part in the AIDSRide because I needed to do something that was harder than anything I had ever done before. But the ride was much more than that. It was not about me, but about educating others about the horrors of HIV.

On July 9th 2009 I suddenly began learning about Hepatitis C, a virus that I knew nothing about and had heard no one talk about.....surely it was rare. Actually there are more than 5 times as many people in the US with Hepatitis C as HIV, a total of about 5 million people infected in our country alone!

If so many people have Hep C than why aren't more people talking about it? Amazingly because most of them don't know they have it and most doctors never order the proper screening to diagnose it!

Since so many people have Hep C there must be a great deal of support and education for people who have it. Wrong Again! One of the cruelest parts of Hep C is that due to misconceptions and stigma, most people suffer in isolation and silence...scared that people will pass moral judgment if they tell their friends that they are HepC positive.

This allows the virus to spread....under the cover of ignorance, fear and apathy.......

Which brings me back to my rhetorical question, "why me?".....

I don't believe that God gave me Hepatitis C so that I can "learn a lesson", but I do believe that God has given me opportunities to learn lessons, so that I can help others learn as well. I will not be a "victim" of Hepatitis C. I will not be silent and hide in fear and isolation. I will seize this as an opportunity to educate others.....because this is not about me. This is about the 5 million plus citizens in the United States who are living with the virus. This is about the 170 million people in the world who are living with this virus. And most importantly this is about finding a cure for the millions of people who are known as "non-responders", who cannot be cured with current treatments. Because someday I will be gone....and it is my intention to make certain that this virus will also be!

Why me? Because God has let me know that this is not about me. This is about us, trying to do what has been impossible thus far, and what some still say is impossible.

Because if you never try....you never succeed!




Keep the Faith! Kill the Virus!

Love is Strong

Last Monday night I received my second weekly injection and the impact was “pretty intense” for a few hours afterwards. Anyways Tuesday I was still dragging and spent much of the day sleeping. My children knew that I was obviously not feeling well and offered a prayer for my relief. On Wednesday morning when I awoke I felt great! As I first woke up and was still lying in bed I remember thinking that I felt the best that I had in a very long time! Just after waking, my youngest son Ruhu’llah presented me with a handmade get well card which touched my heart. In addition he handed me a cut out heart, with a message that was so profound it has become more so each time I meditate on it. It stated simply, “Love is Strong”, from Ruhi.
Yes Ruhi, Love is Strong! And the love of those around me is the strongest medicine that I could ever have!
It strikes me as being incredibly ironic how often we speak of the negative or destructive “powers at work” in the world around us overlooking the power of love. We are in danger of being able to only recognize the lack of love; failing to take note of the transformative and healing power of love.
Love is strong!!!! Now there is a thought for the day…….why do we forget that?

When you love a member of your family or a compatriot, let it be with a ray of the Infinite Love! Let it be in God, and for God! Wherever you find the attributes of God love that person, whether he be of your family or of another. Shed the light of a boundless love on every human being whom you meet, whether of your country, your race, your political party, or of any other nation, color or shade of political opinion. Heaven will support you while you work in this in-gathering of the scattered peoples of the world beneath the shadow of the almighty tent of unity.
You will be servants of God, who are dwelling near to Him, His divine helpers in the service, ministering to all Humanity. All Humanity! Every human being! Never forget this!
Do not say, he is an Italian, or a Frenchman, or an American, or an Englishman, remember only that he is a son of God, a servant of the Most High, a man! All are men! Forget nationalities; all are equal in the sight of God!
Remember not your own limitations; the help of God will come to you. Forget yourself. God's help will surely come! 
When you call on the Mercy of God waiting to reinforce you, your strength will be tenfold.
Look at me: I am so feeble, yet I have had the strength given me to come amongst you: a poor servant of God, who has been enabled to give you this message! I shall not be with you long! One must never consider one's own feebleness, it is the strength of the Holy Spirit of Love, which gives the power to teach. The thought of our own weakness could only bring despair. We must look higher than all earthly thoughts; detach ourselves from every material idea, crave for the things of the spirit; fix our eyes on the everlasting bountiful Mercy of the Almighty, who will fill our souls with the gladness of joyful service to His command 'Love One Another'.

    Abdu'l-Baha, Paris Talks

Signposts

I know that I have shared that this portion of my journey began with a visit to the doctor for a basic physical. What is interesting to me, is why I went for the physical. On June 27th, 2009 I was at Southern Dharma Retreat Center for a weekend of dancing and singing, inspired by Sufi dances and singing sacred verses from all different religions. The weekend culminated with a dance in which we all were praying for the healing of the people of the world. It was at this time that I was given the clear and unmistakable message that I needed to seek medical care. I don't often feel truly guided to do anything (nor do I spend much time dancing and singing, but it is something that I would encourage others to check out). I don't know how to describe what I had happen, but I was told clearly that now it was time to go to take care of myself. The experience was so profound that when it happened I felt scared and confused, fearful that something very bad lay ahead of me. Later that afternoon, as I sat silently meditating and praying I felt this fear replaced with serenity and peace, and I began to feel confident that whatever lay ahead, God would give me what I needed to face it. This feeling has stayed with me nearly every moment since then.

I believe that God sends us signposts all throughout our journey, but unless we know "how to read", or take the time to read them, we stumble along in darkness or rush forward at unsafe speeds oblivious of the beautiful landscape that we are rushing past. When we remain open, we receive countless confirmations from God each day, guiding us as we move forward. My personal experience has convinced me that in order to be able to recognize these signs it is important that I spend time each day focusing on my spiritual development, praying, meditating and serving others.
 
Lately I have realized that the part of my journey that I am now on has hit a steep uphill section. I can feel it. Some steps are hard to take and yet still I need to keep putting one foot in front of the other, more deliberate than ever. The path is hard and slow, a much different pace than I am comfortable with. Suddenly I feel shifted back to living very much in "today"...in the "minute"....in the "second", that I am presently experiencing. Every 12 hours I take another dose of Ribavirin and wait to see what happens (so far the side effects have been pretty well tolerable.... although I seem to be experiencing what a friend called "Man-o-pause"...a series of intense, hot flashes...thankfully this only lasts about an hour at a time).  My Outlook calendar fills up with meetings months in advance, and I am living minute-to-minute.

One of the blessings that has come with this slower, more deliberate pace is that I feel like I am noticing more of the beauty around me. God's grace is more evident than ever. As I type, a night of insomnia is ending with a beautiful sunrise! All around me I am seeing people caring and helping each other. And perhaps one of the greatest blessings that I could ever experience is that I know that I am not traveling this journey alone. I am surrounded by friends and family and we are all climbing this mountain together, uncertain what lay ahead, but moving onward up the mountain towards an unseen peak.  I am privileged to have your accompaniment. I am thankful to each and all of you! And, I am thankful to God, for the signposts along the way!

Things could be worse....much, much worse!

Monday we began the chemical warfare against the virus....and yes I am using weapons of mass destruction. I had initially thought about naturopathic treatments and then I watched a nifty video online that showed the virus replicating up to 10 TRILLION times per day...and I was like...OK... so lets call in the heavy artillery! I will be using natural treatements as a complement and post treatment. Fortunately I have the coolest doctor on earth...or at least one of them...and they are completely willing and supportive of me researching and trying things that I am drawn to try...providing that they are not known to have a harmful effect on the liver.

So yesterday I took my first doses of riba and my first injection. It turns out giving yourself an injection isn't such a big deal.  Throughout the day I felt kinda icky and sweaty, a little bit nauseous and on edge...but I have felt much of this for a good long time...so I don't know if it was meds or virus making me feel that way.

Tuesday morning I awoke and  immediately started laughing as I remembered a conversation that I had with the doctor on Monday in which she implored me to exercise at least 10 minutes every day. As I began to enter into the world of consciousness and realize what I was feeling like the thought of exercising was nothing less than humorous! Feeling the way that I felt at that moment I was more likely to light myself on fire than I was to exercise! LOL!!! I was not sure if I could even stand up...although I did....motivated by the fact that I had drank 120 ozs. of water yesterday and I understood the implications if I didn't stand up and amble across the room quickly!

Once I got up and started the day I realized that the feeling that I had felt strangely familiar. Then it dawned on me I was feeling absolutely and totally hung-over. Like I had just been on a three-day non-stop bender! Like I had taken twelve different drugs in pursuit of the ellusive knowledge that I thought the universe was trying to hide from me and that hallucinogenic drugs were going to allow me to discover! I had been here before.....

And then I realized...no, I have not! I was not drunk yesterday. I was not weaving through the streets of my home town...ranting and raving at those people who crossed my path. I was not hiding somewhere getting high and not caring about the impact that it had on me (or others). My actions yesterday will not put me at risk to go to jail. I did not cheat anyone so that I could have more money for drugs or booze. I remember where I was and what happened yesterday.

I suspect that feeling hung-over and crappy will get old if it continues for the next year straight... but I realized this morning that I have lived through worse...active addiction. I have already spent a large part of my life hung-over.I am grateful that as lousy as I feel...I am clean and sober. Things could be worse....much, much worse. I am not hung-over....I am healing! I am blessed beyond words!

Now...about that exercise...I'm still not too sure....

Prayer for patience

"Resort ye, in times of sickness, to competent physicians"

Resort ye, in times of sickness, to competent physicians; We have not set aside the use of material means, rather have We confirmed it through this Pen, which God hath made to be the Dawning-place of His shining and glorious Cause.
-Baha'u'llah, The Kitab-i-Aqdas


Following my last visit to the gastroenterologist, I realized that although the doctor and physician assistant were both nice people and probably very effective with some diagnoses, it was clear that the treatment of Hepatitis C was not their specialty. Lauretta reminded me of the above quote which provoked me to go to an appointment with another doctor who I had called and spoken to. I am so glad that I went to the appointment as I found a competent physician who is both passionate about her work and compassionate in her treatment of patients. I have been praying and asking God to help me find a collaborator and He sent me one! At the moment that I was told that I had Hepatitis C I felt absolutely alone…..gradually I can feel more people and more support starting to build around me. I do not feel alone, and in fact I am finding that I can be of support to others who themselves are just finding out that they have Hep C.

Next week I start a year long course of treatment. While the treatment is very hard for many people to tolerate and it often does not work, for those who respond to it, it is a Miracle Cure. I believe in miracles and have in fact already been blessed by several in my life, so I am on board and will start the treatment on Monday. I had the meds (Interferon and Ribavirin)delivered by UPS on Wednesday and I welcome their arrival. I am not a big fan of taking medication and have tried to take it as seldom as possible over the last 2 decades, but I am viewing these particular meds as a Silver Bullet against an evil assailant. These drugs provide HOPE for the hundreds of millions of people who are faced with this virus, and who would otherwise have very few other options at stopping this slow killer.

I would of course welcome your prayers for my family and to increase the effectiveness of the treatment and that all goes well.Please feel free to forward this blog to others who you think would be interested in joining us on this journey. Also please feel free to add comments if you would like.

Say for me love

A song for the day.....


Years ago a dear friend of my dreamed that she was walking across a bridge and she encountered me. Startled to see me on the bridge she asked, "Rus, what brings you here?"
"Love", I replied.....

turn up your speakers, click below, close your eyes and enjoy....

Living of Love

Dear God...please send me a sign....

Today I went back to the gastroenteroligist for my second appointment. The first time I went I left feeling a bit discouraged and confused, as you can tell from my previous post. One of the most amazing things about this journey so far is that there are roughly  4 million people in the United States that are infected with Hepatitis C and yet as best as I can tell each person is trying to individually negotiate their way through treatment. While their are some online and national resources out there, many of these are tied to drug manufacturers. At the local level it seems very hard to feel like you have a clear idea of what is happening or what to expect. It is like I am on a personal quest for information and that I have to gather and try to sort out and make sense of. I could not do this with out Lauretta's help.

....anyways....I'm digressing a bit......

I have been praying a great deal lately that I would feel guided and that God would help me to know the right thing to do. Lauretta has also been praying and asking that I have clarity and be guided as I try to decide what to do in regards to treatment options.  So today I was given the go ahead to start treatment. Treatment is kind of brutal...a year of interferon injections and daily doses of ribaviran, both pretty heavy drugs. Some people are unable to complete treatment due to the side effects, but most make it through. I am pretty confident that I will do well, but I would be lying if I did not say that I was a little scared. After we left the doctor's office I did not know whether to jump for joy (because I was going to start actively fighting the disease) or to cry. I asked Lauretta to drive because I was feeling much more inclined towards crying. We drove up the street and stopped in a parking lot where we started to talk and I started to cry.

Suddenly Lauretta laughed and said look, pointing across the parking lot at this:

 

I had been a little bit afraid of the next year, thinking that it was going to be a tough one. But I know now that it will be a Good Year and God will be with me every step of the way!!!!!

I know your thinking I made this up...but honest...it happened just that way! 

God is Good All the Time!

A few miles back...

The following is a post from a support group website that I belong to written a couple weeks ago. It casts some light onto some of the things that I have been experiencing. One of the things that is so striking to me already is that I am going to have to be my own case manager and advocate. It is unnerving how common this disease is and how little resources and support there is available in South Carolina.




Passing on the Queen

Sunday, August 2, 2009 | A Rambling story
 

Thursday I  went to the Gastroenterologist  all fired up and ready to do battle! I took a list of questions in with  me and was in a pretty good mood. The nurse that did my vitals told me that I would love Amy, the Nurse Practitioner, and that she was the "Queen of Hepatitis C". Things were looking good.

When Amy came in she was very reassuring, letting me know that I am probably not as much of a Biohazard as I was feeling the other day! In spite of what the nurse at the urgent care told me, I probably have not given Hep C to my kids or even my wife!  I knew that….but hearing her tell me was very helpful. (note: Thank GOD, I now know that I am the only one in my family with Hepatitis C!)

Things were going pretty well and then she began to talk about treatment. As she started in talking about responders and non-responders I could feel myself starting to drift off.  "It is chemotherapy but it is a different kind of chemotherapy, milder and over a longer period of time than for cancer". (Is she trying to tell me that this is going to be a kinder, gentler chemo? Hmmmmmmm…I'm not sure that I buy it)…..

…….At this point I can feel myself drifting up towards the ceiling. My brain is also drifting, but in a different direction, having apparently cut ties with the rest of my body.  "...and sometimes patients who have successfully cleared the disease from their system, relapse after 6 months….".   I am vaguely present.

"Do you have any questions?"

I glance at my list in my hand and answer timidly, "no, thank you for your time" (shhhh…don't wake the dragon). I have quietly conceded the days battle.

I have left almost completely. When suddenly my secret weapon springs to action, almost startling me.

"Are there any alternative or natural treatments that can be used or that might help?" asks Lauretta, my wife.

The Queen is not pleased. "No", she replies as her mouth tightens and the corners curl. "Some of the non-regulated by a government agency herbs actually cause harm to the liver. If they were helpful I would have heard of them and pharmaceutical companies would have picked them up and be selling them".

Lauretta had asked THE QUESTION that I needed to have asked.  Suddenly I realized that the Queen, while she is nice and kind, and pleasant, is in essence a pharmaceutical rep/ salesperson.  She knows Peg and Copeg and everything else is outside of her realm. While this may be satisfactory for many, it is not for me.  Even though I expect that I will do the Peg/Copeg tx I want to feel like my doctor has something more to offer as well. 

I guess my main feeling is that whatever route I choose to pursue, it is probably going to be hard at least at some point and when I reach that point I want to feel like I can have absolute confidence in my careprovider. I know that they cannot guarantee outcomes, and I am OK with that….but they do need to guarantee that they will respect me and try to work as a collaborator in my treatment. I view it as I am building a "treatment team" and while the doctor may have a critical role, so do my wife and I.

I left the doctor's office feeling discouraged and confused, (still only partially in my body) but fortunately Lauretta helped to get me back in the game  (and in my head)by reminding me that I had some positive steps ahead of me to take. We drove over to the hospital and I had blood drawn so that I could learn my genotype and viral load, and I scheduled an ultrasound of my liver. These two things are actually big progress.

Over the weekend I have done some research and I have found another doctor's office who specializes in Hep C! On Monday morning I will give them a call and try to schedule an appointment. Hopefully by the time the lab results come back I can get an appointment with them. I don't need a Queen...or a King.....or even a Princess or Prince.....I need a collaborator.

The Dangers of Traveling Alone

I know that at least some of you are saying.."why are you doing this....why are you blogging about this stuff?"
Over the past several weeks I have prayed, meditated, consulted with my wife and others in an effort to determine how best to handle this situation and to not simply endure, but to fully embrace it. My only real frame of reference is my experience recovering from drug and alcohol addiction. By accepting the fact that I was an alcoholic and addict in 1989 I was able to begin the healing process. I quickly became part of a community as I began to reach out to others who were also trying to escape from destructive patterns of behavior. While I initially connected primarily with people who were coping with similar experiences, I gradually recognized that while we each have our own daily struggles, we all have our own daily struggles. Suffering and hardships are an important part of the human experience and in fact strengthen our character and our connection with God.

O SON OF MAN! For everything there is a sign. The sign of love is fortitude under My decree and patience under My trials.

-Baha'u'llah

Often we feel that our hardships are ours alone and we fail to realize that they cause us to rely on each other. I don’t believe that this is an accident; God wants us to rely on each other. It was only when I had been beaten into submission from drugs and alcohol that I was ready to ask God for help. God came through! This experience also required me to ask others around me for help, something that was not particularly easy for me. They came through as well! Although I did not realize it at the time, my mind and heart were being opened up to an entirely new reality; one which has been much more fulfilling than I could have ever envisioned! My struggle with addiction, which at one time isolated me from those around me, connected me to the people around me at a very profound level. Unless and until I was willing and able to admit that I needed help could I get any help and begin to experience a sense of unity with other people.

In trying to figure out how best to cope with the recent news that I have a chronic disease, my first impulse was to try to hide this from others. I was fearful and embarrassed, afraid that others would think less of me. Within a couple days I quickly realized that by trying to keep a “secret” from everyone around me, I had to build walls and remain guarded with everyone that I spoke to. If I told someone, and then asked that they not tell anyone else, I was putting them in a challenging position. At times I felt like I was not being honest with people around me, as I was giving vague and half true answers to my friends and family members. I believe that truthfulness (even if it makes us a little uncomfortable) is the cornerstone upon which healthy individuals, families and societies are built.

Truthfulness is the foundation of all the virtues of the world of humanity. Without truthfulness, progress and success in all of the worlds of God are impossible for a soul. When this holy attribute is established in man, all the divine qualities will also become realized.

-Abdu'l-Baha

Based on these two realizations; the universal nature of hardships and the importance of truthfulness, I decided that the proper response to being diagnosed with a life threatening disease is to talk about it openly and honestly. I believe that such an approach has two potential benefits. The first is that I think that it is the healthiest and most healing approach for me personally. I (and my family) can benefit from the support and prayers of friends and family around us. Secondly, and more importantly I fervently pray that at least one other person can be inspired to reach out to those around them and ask for help in coping with the hardships of their life. I hope that through this I can be able to support those around me as well.

The scary things in life are always scarier when we feel alone. This blog is a humble effort to encourage an ever-widening circle of love, in hopes that none of us will ever feel that we are traveling alone.

"Well...How did I get here?"

And you may find yourself living in a shotgun shack
And you may find yourself in another part of the world
And you may find yourself behind the wheel of a large automobile
And you may find yourself in a beautiful house, with a beautiful Wife
And you may ask yourself: well...how did I get here?

-David Byrne

On June 26-28 I went with my wife and a couple of dear friends to a Buddhist retreat center in Western North Carolina. For three days we prayed, meditated, sang Sacred Verses from the worlds religions and danced like Sufis (think whirling dervish)! This is not something that we typical do, but a vacation for the soul if you will. The spiritual energy that I could feel rising within and around me was unbelievable. As we past the weekend in silence (when not singing) I could feel an inner peace and strength growing. Along with this inner peace I could hear a voice from within telling me to go the doctor and get a physical.

On July 2nd at 10:22 am I stopped by a local walk-in clinic and asked for a complete physical. What ensued was rather disturbing...a brief discussion with a physician assistant, a glance in my ears and mouth and an order for bloodwork. At the time I was mystified, as I felt like it was by far the least "thorough" exam that I had ever had a medical professional give me. 48 hours later I was informed that my liver enzymes were significantly elevated and more blood was requested. On July 9th I returned to the walk-in clinic and was handed a computer generated print out that stated that I had Hepatitis C. I think that I will never forget the look on the nurse's face as she told me, and I will always wonder if she could see me as I floated away up into the corner of the room as she continued to talk to me and tried to reassure me.

Now....some time has passed....and I have moved from that point (though I have to be honest...I am still floating around at times...wondering what is going on). But now, I know that she did not give me bad news....she gave me news that may well allow me to continue to live a much longer and healthy life! The PA who I thought had given me the worst physical of my life had ordered the one lab test that I needed!

Yesterday I was driving and I was yelling along with the Talking Heads song "Once in a lifetime". I heard the line, "and you may ask yourself: well how did I get here?" And I heard myself yell, "by the Mercy of God".

The next part of the journey...welcome aboard!

Over the past couple decades I have discovered that the thing that I cherish most in life is "the journey". Each of us travels through this world on our own individual journey, and yet at the same time we travel together. This blog is my attempt to capture and share my journey with others and begins with me standing at a significant crossroad in my life. Having recently been diagnosed with a chronic disease, Hepatitis C, I am faced with some big choices about the path I will choose.

While I suspect that I will have thousands upon thousands of choices to make on this part of the journey, each with an implication for my overall health, my sense is that I am now faced with one of the most significant that I will need to make...this is the choice between "Hope" and "Despair".

At some points in my life I would have had a hard time making this choice. Fear, anger, insecurity and lack of faith were the main drives which determined my choices. Today I believe that even some of the hardest things that life confronts you with, things that you pray would never happen, actually provide us with opportunities to grow, to feel God's Grace and Mercy and to experience love...these are the signposts on the path of"Hope". This is the path that I am choosing, although I may need your encouragement to stay on this path when the journey gets hard. My road map and North Star for this journey are the Writings of Baha'u'llah. These Writings have provided a consistent and unfailing source of inspiration and understanding since I first read them in 1989. At this time the following quote seems particularly relevant:

O SON OF MAN!
My calamity is My providence, outwardly it is fire and vengeance, but inwardly it is light and mercy. Hasten thereunto that thou mayest become an eternal light and an immortal spirit. This is My command unto thee, do thou observe it.

(Baha'u'llah, The Arabic Hidden Words)

Welcome aboard the journey.........