How Can I Help?

I got a phone call a few nights ago from Karl Johns.  You may not have yet had the privilege of having met Karl Johns, but if you went to high school with us, you know that Karl is a man among men.  In high school he was a football playing wrestler and was shaped like a triangle.  He also blushed and giggled if you dared tell him that you thought he was good at any of it.  Karl stood out as a fine example of Godly youth and I always admired him for it.  I had not spoken with Karl, I believe, since we graduated high school (mumble-teen years ago), until he called me out of the clear blue sky.

There were a few things which I did not take into account when I began this last, and most daunting, leg of this journey.  This endeavor of mine is such that I feel humbled and exposed.  Frankly, that is a scary place to be, and I did not consider just how scary full exposure could be.   I did not consider, also, the enormity of support that would step up from every page of my life’s story.   I have been sent daily reminders that every corner of my life is rooting for me and this keeps the scary at bay.

So, there I was, talking to Karl just like we are old buddies who always talk on the phone.  It was odd and really cool all at once. Karl tells me that he lost his job this summer (12 years solid security and law enforcement experience, fyi) and that he wanted to brainstorm some ideas for getting me to Israel and getting this MS done with already Karl’s enthusiasm was just what I needed right at that moment.  I got off the phone feeling ten feet tall and bullet proof.

So, how can you help?  You have come out of the woodwork to high five me and offer your prayers.  That is more help than I can express.  This is going to be difficult on a lot of levels, but I know that I will never be without support.

On Monday, I will post a list that breaks down the $140,000 that I hope to raise to fund this recovery mission and ways that you can help.  On Tuesday I will see my neurologist, go over my plans in detail, and get the MRIs ordered so that the doctors in Israel can be on the same page as my doctor here.   (For the MS patients following along: It gives me a degree of comfort that the doctors in Israel require documentation of my current status with MS.  I’ve had a (no chemo) adult stem cell clinic in Mexico accept me based on my word alone and that gave me immediate reason to pause.)

For right now, though, I just wanted to take a minute on this chilly Saturday morning to thank you for the donations, for the e-mails, for the comments on this blog, for the Facebook chatter, and more than anything, for your prayers.  I am bolstered by an incredible team because of a merciful God.

Tags: donate, friends, God, multiple sclerosis, prayer

About Donating

This will not happen without the financial support of all my friends and family and all of their friends and family and all of their friends and family.  To help, please help me get the word out with Facebook posts and e-mails.

Donations can be made at this website to a Pay Pal account using a credit or debit card, or donations can be mailed in to Westover Hills Church of Christ.  Make checks or money order out to “Westover Hills” and mail it to: Westover Hills Church of Christ | 8332 Mesa Drive | Austin, TX 78759.  It is easier for them if you do not put my name in the memo, but rather on a sticky note attached to the check or money order.  Please let me know when you send a donation to Westover, and the amount, so we can make sure it gets where you intended it to go.

In case you haven’t noticed my fancy new thermometer on the side bar, check it out!  We are already at $6,450 and we haven’t even started fundraising for real yet!  Thank you, thank you, thank you!!!

Head, Shoulders, Knees, and Toes

This post will serve as a baseline for what I am hoping will be a health graph that only goes up from here.  No more losses this year, team!

This will help in the months after the transplant to determine how much I have regained, and to determine any new losses.  Statistically, I should recover about forty percent of what I have lost already, while stopping any further disease progression.  However, you and I both know that statistics are not the determiner of outcomes.  God is.  Let’s shoot for 100 percent recovery, shall we?

I’ll start at the top and work my way down.

• Mind: I suffer from moderate cognitive thinking fatigue.  A healthy brain can start a repetitive task and be doing it on auto pilot by round three.  My brain fatigues of thinking after round two and by round six I am a high strung, anxious, panicky mess.  In other words, if I was asked to make ten pies, you would not want to eat pies 6-10.   I cannot handle more than one task at a time.  It has been a very long road for me to really see how limited I am in that regard.
• Eyes:  I have limited peripheral vision and experience a small degree of pain when moving my eyes from side to side due to damage on my optic nerves.  I often get migraines that start right behind my left eye.
• Face:  Between 3-7 times a day, I experience trigeminal neuralgia.  This is a very painful spasm that comes suddenly and lasts for up to one minute.  It is brought on by touching my face, brushing my teeth, smiling, eating, drinking, wind on my face and, oddly enough, sudden loud noises.
• Throat:  After about five minutes of using my voice (reading out loud, for example), I experience a sensation in my throat much like a large lump when one is about to cry.  It is very painful and I find that I must work to “talk around it” if I hope to continue speaking.
• Neck:  If I decide I would like to put my chin near my chest for any reason, I can guarantee that I will get an electric shock sensation down my spine.  This is called L’Hermittes sign.  It is annoying most days, but down right adding insult to injury when I am trying to stretch my way out of some other ms induced pain.
• Rib Cage:  The tiny muscles that rest between each of my ribs are in near constant spasm.  This creates a sensation some call “The MS Hug”.  Some experience it so badly that they have a difficult time breathing.  Mine has caused me to hunch over in a position that has caused other spasms in my lower back.  As far as my regular MS pain goes, this symptom is near the top of my list.  Most days, I feel as though my ribs were being crushed to fine powder.  Sometimes my breathing becomes tight and I have to talk myself down from a near panic attack.
• Arms and Hands:  My eye – hand coordination is surprisingly good for a kid who used to be a quadriplegic.  I have significant muscle weakness in my hands that can be mistaken for a lack of coordination because I often drop things.  If I cannot see my fingers, I do not know what they are doing.  Do not ask me to blindly dig at the bottom of my purse.  It never works out well.  My arms tire very easily and I have to be careful to parcel that energy out, because when it is gone, it is gone until the next day or two.
• Bladder:  I have a classic “MS Bladder.”  I put a link there so that I wouldn’t have to paint a picture.  Some patients have severe problems in this area.  My issues are minor annoyances.
• Hips:  I have spasms in my lower back that radiate through my hips and down my legs.
• Legs:  My balance is pretty good, considering, but it takes a whole lot of energy to stay upright, so I would say that my legs have maybe one hour total of daily walking around energy on an average day.  This includes time spent standing to wash dishes, fix dinner, walk from laundry room to kitchen to bathroom, etc.  Any more time standing or walking puts me in a deficit for energy.
• Feet:  I experience drop foot to some degree in my left foot.  This leads me often to put into practice the “tuck and roll” technique that a very wise occupational therapist taught me at the very beginning of my ms ride.
• Toes:  My big toe on my right foot is numb.  This is not a big problem for me, but, seriously.  I’d like to have my big toe back too.

In addition to these symptoms, I have insomnia and overall fatigue.  There are other things that come and go as I get more tired, but I figured this list of standard symptoms would be a great baseline for comparison.

I find that dealing with all of these symptoms through the day makes it difficult for me to reign in my emotions and present a good attitude.  It is no small thing the way God has bolstered me up for this challenge.

Latest News

There are two approaches to Hematopoietic Stem Cell Transplantation (HSCT). One method is called “myeloablation with autologous HSCT transplantation” and the other is called “lymphoablation with autologous HSCT transplantation”.

The first version is full chemo with bone marrow transplant, while the second version is a somewhat less intensive round of chemo with bone barrow transplant. The data only goes as far back as 9 years, but so far the results of both as applied to MS is identical. The less intensive chemo was developed, in part, by doctors with International Center for Cell Therapy & Cancer Immunotherapy (CTCI) in Tel Aviv, Israel (along with Dr. Richard Burt, the neurologist at Northwestern University who is currently in phase III trials of this approach.)

Lymphoablation with autologous HSCT as a protocol for MS is so far available only in the United States and in Tel Aviv (to the best of my, and others, research.)  I do not meet the protocol for the phase III trials in the United States, so I applied for admission to the hospital in Tel Aviv.

On this past Sunday morning, after two weeks of waiting by the phone, I received word that the doctors at CTCI would accept me as a patient.

This is not something that insurance will cover and I will be enlisting the assistance of friends and family to raise funds to make this happen.  I have a confidence that this will not be a long process.  My family and I are currently speaking with the proper folks to get the ball rolling and I will update as I know more.

For now, I will be starting the needed steps to prepare my body for the gauntlet and my family for the journey.  Please join me in worshiping a God who does not leave us abandoned to our misery.

Tags: God, hematopoietic stem cell transplantation, multiple sclerosis

What’s the Plan?

I was going to try and use my own words to tell you what I am planning, but then I remembered that I took freshman Biology twice to get a solid B-.  What follows is an excerpt from Neurology Reviews, vol 14, No 8, August, 2006:

Immunomodulating treatments are currently the only established forms of therapy for multiple sclerosis (MS), but by and large these treatments have been only partly effective for most patients. Based on the results of experimental models and on clinical observations in patients with malignancy and patients with MS, hematopoietic stem cell transplantation was proposed for the treatment of autoimmune diseases and has been shown in several clinical trials to be at least moderately effective in patients with MS. A newer strategy—high-doseimmunosuppression (also known as immunoablation) plus autologoustransplantation, which involves the complete eradication and reconstitution of the patient’s bone marrow—has shown promise in early studies and is now being investigated in ongoing phase II trials.  

Autologous hematopoietic stem cell transplantation was first studied [in the US] as a treatment for MS in the late 1990s [and in the early 1990's in Europe]. Results have been analyzed in both single-center andmulticenter trials and collectively in a retrospective study by the European Group for Blood and Marrow Transplantation (EBMT) retrospective study. Of the 85 patients with MS in the EBMT database, 74% were found to be progression-free at three years from transplantation, a percentage that is fairly consistent with all transplant studies in MS reported to date.

(note that the date on this is 2006.  The numbers continue to remain at about 80 percent of patients seeing a complete stop to the progression of their disease.)

Here’s how my friend the scientist, George Goss explains it:

“As a curative treatment HSCT works by changing the body’s overall T- and B-lymphocyte epitope (antigen binding) repertoire, inactivating autoimmunity (making the body’s immune cells “antigen naive”) which results in restoration of immune self tolerance. This is often referred to as “resetting” the immune system which stops the underlying MS disease activity & progression. Once achieved, the body then has a chance to repair (or compensate for) existing neural damage that is not undermined by further MS disease progression, often resulting in substantial and lasting symptomatic improvement.”

Let me explain this to you the way I explained it to my ten year old daughter:

“Multiple Sclerosis is simply a bad immune system.  HSCT is a procedure that takes the bad immune system and shuts it down before booting it back up to be a disease free immune system.  While the procedure itself is grueling and not to be taken lightly, it is the only medically offered hope for MS patients who wish to stop the progression of their disease.”

I understand that chemo is a radical choice to be making when death is not on the line for me as it is for a cancer patient who faces the same choice.  The possibility of this not working is there.  The possibility of this being fatal is there.  But, when I hear “possibility”, I hear “maybe”.  My reality right now is that my body is declining.  It cannot be measured day to day, as I have good days and bad days, but the reality is that my ability to live comfortably is slipping away at a steady rate year to year.  I will not die with MS, but I will live a long and brutal life.  That is my reality.  When I hear “reality, I hear “absolutely.”

The science of what I want to do is not new (commonly referred to as “bone marrow transplant”).  The application of this procedure to MS is only as new as 20 years ago.  I feel confident that this will be standard protocol in the USA for the treatment of MS, as well as a host of other immune dysfunctions, by 2020-2025.

This is huge, I know.  I heard about these studies when I was about three years into this disease and it all seemed kind of drastic and unnecessary back then.  I am so very happy to know that God continued to prick the minds of science detectives for all these years.  A jerk doctor told me when he diagnosed me that, “This is an exciting time for MS!”  Maybe he was a jerk, but he may have also been right.

Edited to add: If you are an MS patient looking for more information, George Goss’ blog is a fantastic clearing house of info and is a great place to start.  Good google phrases to get you started are:  ”Autologous hematopoietic stem cell transplantation, autoimmune dysfunction”, “HSCT, multiple sclerosis”, and, “nonmyeloablative transplant, multiple sclerosis”.  Just copy and paste any one of those combos into your search engine and you will get a whole lot of great information.

Tags: chemo, hematopoietic stem cell transplantation, medicine, multiple sclerosis, progressive., rrms

Step One

So, what on earth am I doing and why have I called you all here to this corner of the www for a chat?

I’ve had MS for 17 years.  It is a miserable, mind numbing, soul zapping, body robbing, personality draining disease.  I honestly cannot lodge a complaint large enough for what MS has wrought on my body and mind.

Perhaps you have known for 17 years that I have MS, but maybe you were never really sure what MS is.   That’s okay.  I know all about MS, but only because I have it.  When I was diagnosed, I called it “Multiple Scoliosis,” which would in fact be a terrible disease if that existed, I’m sure.

MS stands for “Multiple Sclerosis”.  Multiple meaning, of course, “many” and Sclerosis meaning “scars”.  These “many scars” are all around and in my brain and spinal cord.  It is a disease of the immune system wherein the immune system has too much free time and starts to attack the myelin sheath around the nerves in the brain and spine.  The disease is not in my blood.  It stays only in the immune system that swims around my brain all day.

Here’s where I get excited.  For 17 years my brain, and every impulse of it, has been firmly submitted to destruction.  I have rejoiced in God’s leadership and holding of me so that I could stand firm and be a witness to His glory during that time.  Now, I think I get to be a witness to the pleasure He takes in healing His children and you all get to be a part of it.  How cool is that!?  Is this not going to be fun to watch?

Step one: Please pray for every step.  I am in a hurry and I need each step to be leaped over like hinds’ feet on high places.  I will be making a post in the coming days about what I am hoping to do, right now I would just really appreciate mass prayers.

Tags: disability, God, healing, multiple sclerosis, prayer, progressive., rrms

Before I Go On…

I started this blog both for my loved ones to stay informed about the steps I’m taking and to provide my personal story to the MS community.  I am very excited about what is available right now and I want to be able to share this with as many as would like to be a part.  There are a few points I feel I must make before I go any further in discussing the options I am pursuing.

The first point is that I feel very strongly that God’s hand is on this process and has been for 17 years.  I believe more now than I ever have that He can reach out any time He pleases and heal my body.  I also believe that He created medicine and the people who research it.  I believe that, given the proper tools, people can have a huge hand in assisting God in the miracle I am now seeking.  I am not seeking a medical cure because I have given up on God, but rather, I am seeking a medical cure because I believe God has called me to it.

The second point I feel I must make is that this is my personal journey.  Naturally, I believe that I am making the wisest choices using all the information made available to me.  It is very possible that you, or someone you know, has tried something else that you or they feel strongly about.  I will not use this blog to tell you that your method is flawed, and I ask that you offer me the same respect.  The subject of “curing” MS is a very touchy and sensitive one.  I am not wanting to enter that frey.

Thank you for following along.  I will keep posting as things progress.  Here’s hoping it’s a brisk pace.

Tags: God, healing, medicine, multiple sclerosis

In the Middle

After I lost my health insurance in 2004, I stopped taking Copaxone.  I expected to begin having regular attacks again, but instead found that I noticed no marked period of new symptoms as much as I was experiencing a slow progression of old symptoms with the occasional slow moving new one added in.

I continued like this for the past 7 years.  If I was asked, I would honestly answer that I was doing same as always.  It wasn’t until I took an honest look at my health in 2004 versus 2011 that I realized just how much I have lost.

In 2004 I was able to walk 2-4 miles in the heat of the day while pushing a double jogging stroller loaded with kids and purchases.  I walked grocery stores, malls, and thrift stores with ease.

In 2011 I am able to walk one mile with assistance and only in the cool of the day and with no stopping.  I must have no other plans for the rest of the day if I take on this exercise.  I now only walk in stores if it is a quick trip.  Anything longer than twenty minutes means I need a scooter.

In 2004 I could easily stand for up to thirty minutes in one place.  If pushed, I could stand for up to one hour, though this would be a big deal.

In 2011 I find that standing in one place for more than two minutes is almost impossible before I must sit down.  The inability to stand is making scooters and wheelchairs more common around here.

I’m not a doctor, but I consider myself an expert on MS and my body.  I can easily assume that my MS has turned from a relapsing form to a progressive form. This is not unusual, though I have decided it is unacceptable.

This stark change in my abilities to simply function day to day, coupled with the addition of painful spasms and muscle atrophy, has brought my MS to my full and complete attention.  I can no longer quietly sit and hope that it gets better or stops on its own.  It will not get better without intervention.

Tags: disability, multiple sclerosis, progressive.

In the Beginning

When I was diagnosed with relapsing remitting multiple sclerosis (rrms) in 1995, I was a 17 year old who needed a walker to get around. Lots of steroids, youth and God’s merciful kindness saw my disease remit to a point where it became more annoyance than disability for the next 10 years.

I started out on the every other day injections of Betaseron, until I developed antibodies to it after two years. I then began weekly injections of Avonex. I had two exacerbations while on Avonex and found the side effects of flu like symptoms to be severe. I was then taken off Avonex and began daily Copaxone injections. While the injections site reaction of painful raised bumps all over my arms, legs, belly and rump was quite uncomfortable, I was exacerbation free for the two years I was on Copaxone.

Then I had two back to back pregnancies. I, obviously, stopped taking Copaxone during pregnancy.  I was fine in the first with my daughter, but experienced a flare-up while pregnant with my son and again six months after he was born. I began the Copaxone injections and experienced no distinct exacerbation, but saw some amount of gradual symptom ramp up.

This was my status at 27 in 2004 when my husband lost his job, I lost my health insurance and I went “off the grid” with treatment.

Tags: avonex, betaseron, copaxone, multiple sclerosis, pregnancy, steroids