10/24/12  Keep Swinging 

Two weeks ago I flew to Virginia to meet with a vascular surgeon as per suggestion from my last meeting with Dr. Arata.  After a presidential campaign-like whirlwind trip that lasted 25 hours with stops in New York, Baltimore, Washington, DC, Annandale, VA, and Minneapolis, the upshot of the meeting was that I am way too high of a risk to do another vein reconstruction.  The risk for loss of patency (i.e. won’t stay open) is high, and more importantly, the inability to control bleeding in the existing scar tissue is a real concern.  This is similar news to what I’ve got from several vascular docs before.  The doc in Virginia is, however, requesting all my films and procedures from Dr. Arata so they can consider some other options for me.  We’ll stay up on that. 
After that news, I re-contacted Dr. Arata to set up another inverventional procedure.  I got home yesterday after that.  This trip was to try and find a way to either re-open the graft or to reconnect the native jugular to the base of the superficial temporal.  As a side note, this was procedure #11 for me.  It was #9 with Dr. A (the other two were at Mayo), and this was the fifth location I’ve been on my back in a gown while he poked his tools inside.  The staff at Pacific Interventional knows me quite well.  Not sure if that’s a good thing……..

Anyway, Dr. Arata found a few things.  First, the bypass graft done by Mayo Clinic last August was outright gone and essentially absorbed into my existing tissue in the surrounding area.  I guess it said to itself, “I’m not needed, so I’ll just take my ball and go away.”  So anything to do with the idea of opening that or saving it is out.  Gone.  Not an option.  Second, he wasn’t able to navigate his tools inside the vein(s) to reconnect or stent any of the native jugular because of the spaghetti bowl mess I have in there now.  Third, the collateral that has been developing since the bypass graft clotted is actually doing well and has formed into a decent pathway. 
While I was lying on the table in a sedated state (by the way, I vaso-vagelled again), Dr. A told me about these things he found.  In my state of loopiness, I asked him what the plan was, and he told me there is a good chance we could reconnect the original native veins together by a kind of hybrid surgery/intervention procedure where the surgeon gains the access to the area and he does the stenting.  He said he would discuss this with some surgeons in the coming days.  He told my wife of the findings as well.

As I went to the recovery room and then headed home with Kathy, I began to think about many things surrounding my condition.  The obvious connection I have to open veins and better walking is well documented for me, so the things I thought about were more related to this opening of the vein and why this is so difficult.  I thought about how the technology has evolved in the past couple of years to address the clotting issue on initial CCSVI procedures.  I thought about how the venous bypass last August was so successful but was rendered useless when it clotted again.  I thought about how fortunate I was to have Dr. Arata right there inside my veins with the tools and the knowhow to gently pry open my collateral a little more but made the choice to not do that, knowing if that collateral clotted from an intervention I’d get worse.  The decision to stop then and there and consider other options was great.  Leaving me no better and no worse and with other options to consider was just a great medical decision. 
Mostly I thought about what was next.  I have to keep swinging.  If I stop swinging, I might get a walk, but it’s more likely I’m going to be out.  This is a long at-bat.  I’ve swung 11 times at these CCSVI pitches and I’m still not out.  I’m down.  I’m wondering “why me.”  I’m wishing this wasn’t such a huge part of my life.  But I’m not out.  With 11 strikes, the only possible way I’m still up to bat is I keep swinging and fouling it off.  I get enough of a piece to stay alive.  It might end up being one of the longest at-bats in history, but I’ll keep swinging until I miss completely and I’m out or I get some solid contact.  It seems this is just my nature.

We’ll explore the possibility of this hybrid surgical/intervention, and in the meantime I will also look into the idea of furthering the reduction of the inflammation, which heightens my symptoms, by other means.

9/24/12  Doggone it……
I went to see Dr. Arata in LA a couple weeks ago to see how the collateral was holding up in the left jugular.  I was beginning to feel some more of that irritating presence in my left temple, my legs have not been doing very well over the summer in the heat, my bladder is almost devoid of any emptying pressure, my bowels not doing quite as well as before despite the magnesium, and in general I feel a bit of a decline from my last post.  The good news is the brain fog and morning headaches seem to be not returning.
Through an MRV I learned my collateral is holding steady and the right jugular is still doing well, so it remains fairly clear about the correlation between my MS and my veins.

1)      I’ve had my left internal jugular vein open and close so many times this is undeniable.  Every time my vein has been opened up, my condition improves.  Every time my left jugular has clotted back down, my condition worsens.  And it’s not just subjective.  All my friends, family, coworkers, etc. all notice the difference.  I’ve had 9 angio/venoplasties and one vascular reconstruction.  The improvement after the reconstruction is quite well documented, and I sit about 13 months post op after it clotted about 6 -7 months ago with symptoms slowly deteriorating.  It doesn’t get much more obvious than that.

2)      For me, the left jugular has a greater impact on my walking and bowel/bladder symptoms than the right.  I have a slower reaction to the loss of blood flow with the right open and it seems by having the right open my brain function, brain fog, morning headaches, and the like is still good, but there simply isn’t enough flow on the left side to keep my legs and pelvic symptoms under control. 

3)      Given my problems are accentuated by the left side blockage, and the symptoms are more slowly building because of the collateral that formed on that side, what can we conclude, if anything?  Is the collateral allowing blood flow equal to, more than or less than prior to any intervention?  Is it deoxygenated blood, loss of blood nutrients, or the venous hypertension contributing to those symptoms?  Is it all, both, or neither?  How close is the blockage and associated back-up to the lesions in my head?  Are these lesions sensitive to hypoxic or stagnant blood?  Are they sensitive to the pressure build up?  Is there a way to transvenously stimulate the lesions to promote healing?
The most frustrating thing in this disease, beyond the quality of life, is the constant onslaught of nonsense I read in every medical journal or article that reads something like “MS is a disease affecting the auto-immune system, causing the body to attack the myelin sheath.  There is no cure, but there are treatments that can help improve the quality of a person’s life.” 

So let’s be clear.  I live with this every day, I can feel the symptoms, I’m reasonably intelligent, and I’m pretty in tune with my body thanks to an athletic history.  MS is not an auto immune disease.  It shows up with neurological issues that affect people in thousands of different ways.  It is rooted in vascular hypoxia, and the treatment (and possible cure) is to improve oxygen transfer to levels of normal people let the body to heal from the inside out.  Yes this is my opinion, but one day this will be proven through the proper scientific methods.
For now, I’m awaiting a consult for another vascular surgeon; a guy who understands what we’re doing here and gives me the best probability of success.  Because I have the two bad jugulars, I’m down to a few limited choices on how I can get my left jugular flow improved so the upstream veins in my head can deliver proper oxygen transfer.  I have two useless jugulars on my left side right now (native was stented then bypassed, and the graft shriveled up) and I have enough of a vein left below the skull to potentially attach another graft.  I could possibly wait for the collateral to fully form into a proper vein, them incrementally balloon it over 3-6 procedures to get the flow up to the desired levels.  I’m willing to take anticoagulants – even indefinitely – if I have to, but I do have to tread lightly so the next thing I do has the best chance of success. 
6/11/12    I'm afraid to Jinx it.......

As I had previously posted, I was riding a bike and using the Abdoer Twist in my living room to begin the process of getting a move on with the slow process of recovery.  And it was having interesting results in that I could do the bike for a reasonable period of time and actually walk after.  Since that time, I've had some interesting twists (no pun intended).  My right leg, the injured one, has been very slow in healing, making me realize just how badly I injured it.  My left leg, the one more affected by the MS, is hard to determine how its coming along because the right leg is so weak. 

I finally went to see a doctor about my injured right leg.  An MRI revealed I tore the PCL on the right knee and in the process of dislocating the right hip, it has caused a disruption in the ligaments giving me a clicking sensation and causing me to have a pain reflex and fall down.  One fall was at a casino, so I guess I let that opportunity to cash in slip away.......

The doctor ordered Physical Therapy for my right leg, so I started going to a rehab clinic 3 times a week.  Also a few weeks ago, we took a weekend trip over to Lake Powell. Despite the cooler weather that weekend, my son really wanted to play in the pool.  I ended up playing around with him in the water and found that taking some weight off allowed me to move my legs around quite freely.  I even reached a point where I could stand with the 170 pound beast riding on my shoulders.

On the drive home from Lake Powell, my wife and son convinced me to join the new gym that opened up in town.  It's a national chain, has a rock wall, all kinds of sport courts, a pool, and a million exercise machines.  So between the physical therapy and the pool work, I somehow have ended up becoming a bit of a gym rat again. 

Now to confuse the story a little more, I'll add another element.  A friend recently told me about the benefits of taking iodine.  A few drops a day to help clean things out, he said.  I figured it couldn't hurt.  so I added this to my good food, protein rich, magnesium and other supplement diet. 

Fast forward a couple of weeks now.  After a few weeks of therapy, pool work (i.e. walking, running, jumping, squats, etc. in the water), and iodine, here's what I can report. 

1) I go into the gym with a limp on my right leg.  I come out limping on my left.  The right loosens up and strengthens during the workout, but the left (remember it's more affected by the MS) fills up with lactic acid and feels like I just finished a marathon.  Both legs are becoming stronger though.

2) I have been coughing up more mucus than I have in years.  It's gross but the cleaning out effect is quite remarkable. 

3) My urine is dark and smells awful, and no clear urine has passed in a couple of weeks.

4) My bowels have been dark and gross as well.

5) I feel stronger overall in my body than I have in 5 years. 

6) I've put off posting to the blog because I don't want to jinx it. 

I can't put it off anymore.  Too many people follow this and have requested the update.  So I'm breaking down and posting the update, reporting that I feel pretty darn good, the left temple presence is minimal except during the hardest workouts, my legs are both strengthening, and perhaps most notably, I am sleeping through the night without having to go to the bathroom.......more consecutive nights than I've had in a long time. 

4/11/12  Riding a bike like old times

I had another visit at Mayo Clinic yesterday with a cardio-thoracic surgeon.  I'm always so amazed at how prepared these doctors are when they walk in the room to talk.  Most of the time they know more about me than my parents, and this visit was no different.  I discussed the symptoms and we discussed the risks.  Overall I am much better off since doing the CCSVI in Oct 2010, but not as good as the height of my recovery toward the end of last year. 

Doc looked at my latest intervention on 2/28, and he thought it was a good thing that my right jugular was huge and though my left side was occluded, it had formed a good sized collateral that seems to be relieving the pressure somewhat on the left side.  We had a nice lengthy discussion, almost an hour, and his final offering to me was that the surgery could be done, he'd be willing to do it, I'd likely survive it, but he'd have to go into my chest to attach to the inominate vein or the superior vena cava whic increases the risk and lengthens the recovery, and also it would very likely disrupt the collateral that has relieved some of that pressure.  Most of all, he felt the risk of loss of patency (i.e. the vein staying open again) was not good.  In short, he felt that I was clotting the left jugular because the flow dynamics were simply not calling for it, and it was closing up essentially from lack of need. 

Who knows if that's right or not, but it does represent one plausible theory.  So that's two Mayo Clinic doctors recommending against another surgery.  Still waiting on some more appointments.

So what's this about riding a bike? 

I have an exercise bike in the living room and I ride it in the mornings while watching TV.  I get my pushups in and I do my abs on my abdoer twist, and get myself pretty limber, but since I hurt my right leg on the dirt bike again, I haven't ridden the exercise bike.  Now, I have to admit that part of the reason I don't like the exercise bike is because I usually ride it for 10 minutes then have to sit on the couch for an hour or so because I can't walk.  Well, in the ever changing world of the wonderful disease, suddenly I'm riding this bike like I used to before the disease.  All last week and Monday and Wednesday of this week I rode for 30 minutes or so and got off fully walking and able to carry on with my day.  I've also noticed that my ability to hold urine has improved a little and that the bowel seems to be heading back toward less constipation and more control.  Small improvements to be sure, but noticeable. 

I haven't been able to ride a pedalling bike for any length of time for 2-3 years or more.  Now suddenly I can ride the thing for 30 minutes and get off and walk around.  What gives?

4/2/12 What do we fight for?  Is it worth it?

One and only time on a horse......Los Osos, CA
After coming to the full realization that my left jugular is now flowing like a muddy arctic river in December, most of my efforts now have turned to what to do about it.  I had a vascular consult with a Doc from Loma Linda in Southern California and another visit with Dr. Stone at Mayo last week.  I have several calls and records in to others and I have a few more consults scheduled, which I'll share after they take place. 

The Doctor at Loma Linda initially had a lukewarm repsonse to my case, but as Kathy and I talked about it with him, the interest level rose to the point where he took it to the conference level with his staff and will get back in touch with us shortly.  We were quite encouraged after that visit, because after we left they caled right away to get some more details and dates.  We also got another call from one of the docs we had been waiting on for a few weeks, so the drive from Loma Linda to Phoenix was a pretty upbeat.

At Mayo, Dr. Stone flat out told me he felt the risks of another surgery were signficantly higher than the first reconstruction and said he isn't going to do it.  I have a lot of respect for him professionally, so I won't go into the sordid details of our discussion, but suffice it to say he doesn't want to be the guy who sees my last breath. 

As we drove home from Phoenix on Friday, we had 5 hours or so to digest things before we hit the truly amazing Hoover Dam bypass bridge.  Why does my left jugular keep clotting?  I don't have a hemotology makeup conducive to clots.  My legs don't have DVT, and my arms and legs actually look fairly muscular.  My head isn't swollen, my eyes aren't popping out of my skull, and one of the thigs Dr. Stone said was that if I didn't have MS, as a vascular surgeon he wouldn't even consider the surgery in the first place, let alone the second.  Said it would be something tantamount to medical blasphemy, because veins collateralize and return blood to the heart.  My blood pressure is normal, too, so that's another reason.

So why does it keep clotting?  The right side is huge and flowing beautifully.  Is that the cause?  That I'm returning the volume of blood needed to work properly so the left side collapses enough in low flow conditions to start a clot?

It's a million dollar question to be sure.  But even more challenging is what to do about it?  Here's the rundown on the dilemma.......

1) The MS disease itself seems to be at bay, with no attacks for quite some time. 
2) The overall symptoms have been stable for a little while.  I was getting a LOT better through the end of the year and then pulled back a lttle bit, but not to the point I was when I started this whole thing.  My left leg was getting elephant-like, and I've maintained the normal leg look.  Urinary symptoms are a little worse, walking is a little worse, bowel is a little worse but still much better than before.
3) I have a little bit of a presence (like a dull ache) in my head, left side, from the temple to the upper jaw, that seems to escalate when I try to exercise.  It subsides a little when I clear my ears as if I am on a plane in the climb. 
4) I feel like I'm hung over on most mornings and it takes awhile to get whatever is in my head to drain out and get things going. 
5) The left jugular, though plugged up, has collateralized to a surprisingly large degree.  It isn't a nice straight drain like the native should be, but it's about a third of the size of the right jugular.

If I have another vein reconstruction, I face all the surgical risks such as death, nerve damage in other areas, etc., and the possibility of yet another failure.  If I don't have the surgery, I face the probability of the left temple presence worsening, and MS coming back active, taking me down another notch and/or adding more failures to perhaps my arms which are currently unaffected.

It's torture.  I can't believe I have to go through this type of analysis at 46 years old.  Why don't I get to run or even walk like a normal person?  Why do I have to have every business meeting interrupted by a bathroom emergency?  Why can't I just bend down and fix something like I used to?  Or take my son to Colorado to ski during spring break?  Some might say it's hell.

I often wonder why I go through the fight every day.  Is the chance of a worsening MS condition worth the chance of a severe surgical complication?  Can I live with myself if I get worse without contuing to try?  Is another reconstruction just going to result in another clog?  Is it possible to gently open the collaterals with the angio balloons?  Is there another way?

Then I see my wife and son.  There's no torture.  There's no hell.  There's only survival and a search for answers.  I figure I'll go see somewhere between 5 and 8 vascular surgeons, then sit down with all the data and discussions and make a decision on how to best proceed.  In the meantime, I'll keep my head up 90% of the time and minimize my sorrow for the other 10%. 

2/29/12  Is Silence Golden or Bad News?

The facts are the facts, so I guess I just have to report them and let the rest fall where it falls.  After doing so well for a few months, I began to feel a few little problems in Mid-January.  I lost a little bit of spring in my step coming down stairs, I had trouble on the motorcycle riding down hills as I started creeping up on the tank by not holding myself back on the pegs, and perhaps most telling, I was starting to feel that presence I have in my left superficial temporal vein when the blood isn't flowing.  Knowing I had an appointment at Mayo in 2 weeks, I decided to wait and go to that to see if some of my fears were coming to fruition. 

On February 13th I headed to Phoenix and had an ultrasound done of my jugulars.  After being in the room with the tech who does the test for an hour, and then having the radiiologist come and try to find it, I knew things weren't going well.  The long and short of it was 100% occlusion of the left jugular yet again.  I then went to my appointment with Dr. Stone who, after reviewing the films, extended his hand to me and said as we shook, "Well we tried."  When I asked about further options, he advised he wasn't going to do the surgery again because in his opinion the risks outweighed the benefits.

I have no intention in this blog to be disrespectful to any doctor, especially those who had offered me help and hope, but in making that assessment, I don't think Dr. Stone really considered my future as an MS patient who is currently 46 and otherwise very healthy.  I'm as good a candidate for surgery as anyone, and I'll take a 3 or 4 month recovery over a slow decay any time.  So suffice it to say my trip to Phoenix wasn't so enjoyable.

The following two weeks saw my left leg continue to tingle as though I were sitting on a table with my feet off the ground, and I felt my balance continue to wane a bit.  I didn't lose much elsewhere over this period, but it was clear that I've slipped back some. 

I contacted Dr. Arata again to see what to do and after the scheduling process, I went to see him yesterday in hospital.  While on the table, he poked around my left jugular and found it was completed impenetrable from both the bottom and the top (as a side note, to access the top of the clot, the wire catheter went all the way from my groin up through the right jugular, around my head and down to the left jugular.  It looked like a big shepherd's crook).  That was the bad news.

Dr. Arata told me that native veins have small, hairlike pieces that hold the vein in position and help provide the blood and oxygen, but a graft like I had absolutely required the blood to be flowing from the top in order for it to survive.  He told me the graft had essentially died and shrivelled up inside my neck.  That was worse news.

There was some good news though.  He was worried that I might have lost the capability to have another vein reconstruction, but the procedure yesterday showed him I was a great candidate for a second surgery, given my overall health, age, condition of the jugular below the skull, and other factors.  While I was still groggy on the table he explained it to me and also called my wife, so as I drove home, we talked about it at length. 

One of the stated goals found in this blog is to rid myself of this disease.  I think I've actually already done that because I haven't had any MS attacks for quite some time, and while I cross my fingers that I won't have another, I do say this with some confidence.  So if the disease is out, the damage needs to be repaired, and this means there really isn't any option.  Surgery is what's needed to get the vein open again, and I have the benefit of learning that I will probably have to stay on an aticoagulant for a longer period of time, perhaps indefinitely, to help avoid the graft failing again. 

Dr. Arata's staff is working on getting things set up.  In the meantime, I sit here at my computer reporting once again, that CCSVI, while it has risks, is correlated to MS at least for me.  And anyone that wants to say this is a placebo effect would be incorrect. 

1/30/12 My leg looks like a leg again

My son Jake has been posting up some videos of us out on the dirt bikes lately.  We got a GoPro helmet camera and this has become one of the ways we can document how things are going.  Unfortunately, we haven't done such a good job at editing them so what you have it a rambling on of us riding through the trails here in Nevada, so we will try to get that edited asap.

We went for a ride again over the weekend.  Sunday the 29th was up to a spot we call the garden of eden for some skinny trails, both single and slightly wider than single track.  I ended up doing literally thousands of whoops (bumpity bumps or moguls for the skiers) until my legs felt like they were going to fall off.  I've developed a new way to go over the whoops, kind of a hybrid method between how I was doing it (i.e. slogging through them sitting on my butt while holding on for dear life) and how they are supposed to be done (standing on the pegs in the athletic position letting the bike do the work underneath).  It's made the ride a lot quicker and more fun, and my legs seem to tolerate it well. 

Ah yes, the legs.  Those appendages below the butt that are supposed to give us the ability to ambulate perpendicular to the ground at a speed commensurate with the needs at the moment.  I remember when mine did that.  I've forgotten what it feels like to run or even jog, and I don't remember walking without having to put a great deal of effort into it.  No question my walking is better, but I'm not out of the woods yet. 

The big thing to report today is what my left leg looks like, namely a human leg that matches up with the right one.  The bumps on my ankles are the same, and I can see my veins and other features on the top of my foot.  Just before my first CCSVI, my left leg was swollen.  No features were visible on the top of the foot, and it looked a bit like my foot was inside a balloon.  I got the CCSVI and immediately noticed the features the next morning, but as I clotted up each time over the fillowing year, I had various degrees of swelling show up.  Then in August after I had my vein reconstruction, my leg looked like I got iinto a knife fight for awhile, then it was swollen up for a bit, the wounds wouldn't heal for awhile, and then I managed to get contact dermatitis from the neosporin.  The thing has even looked like a memory foam mattress from the edema.  Today, it looks like a leg.  Still have the scars from the sutures, but it looks like a leg. 

Hopefully soon it will work like a leg. 

ps. Since increasing my magnesium intake I have averaged two unassisted bowel movements a day.  What an immense relief this part of the puzzle is. 

1/9/12 New Year, New Learning

Anyone with MS knows there are times that trying to deal with this disease is just overwhelming.  I have thought many times that if I just stayed where I am now and didn't get any worse I could make it to the end of my life feeling ok.  Then there are the times when I ask myself, "what's next?" when something goes wrong or I have a day that doesn't seem to be an improvement.  It sometimes feels like driving down a long, narrow, winding road at night with just the parking lights on.  With no idea what's around the next corner, a quick sense of relief is soon followed by the challenge and uncertainty of the next one.  It's exhausting, and no matter how many corners you make it around without being hit, you can never let the guard down.

As my legs continue to strengthen (I'll post a video of me coming down stairs soon) and my nights of waking up in a soaked bed seem to fade, it's hard to not feel like my 10-try CCSVI was worth it.  grueling, disappointing, frustrating and irritating as it was, Dr. Arata and Dr. Stone combined in ways they will likely never know to get me on a path where I feel I can not just avoid those dark corners, but to actually shine some bright lights down the road.  It's hard for people who have never known me as an athlete to think of me as an athlete, and wonder why it's so difficult for me to accept being hindered.  I don't often see people who knew me before the disease, so I'm out of sight and out of mind.  Doctors don't see me on a daily basis and only try to address their specific disciplines.  My son is only 13 (nearly 14) and he kind of understands but not really.  So it's up to my wife and I to figure things out.  And I say this again....my goal isn't to just "not get worse."  I want this disease out of my life.  Period.  And that is what I will achieve.

Between searching the internet, talking with friends who are doctors, and friends who are non-doctors, it's clearly a lengthy road to recovery.  CCSVI is still not well understood by the medical community, and many people who have had their veins opened up have not experienced much relief and/or had complications.  Because I had the initial relief from the hypertensive environment and 
I continue to see something measurable fairly regularly, I have the benefit of feeling what is happening.  My thought is the MS disease itself is gone and now I have to weather the passage of time for the nerve damage to heal.  Nerve cells take the longest to repair in our bodies, so this makes sense.  It also makes sense that, if true, I will regain function in the reverse order that I lost it.  So from the day my veins were finally opened back in August, my daily mission is to do anything I can to keep improving.  Easier said than done, but any progress is hope.

Lately the thing that seems to be improving is my bowel function.  Perpetually constipated for the past few years, my wife and I have come across magnesium in our research.  It seems I have had a magnesium deficiency for some time and didn't know it.  Both times when I was in hospital in 2011 my exit was delayed because I was low on magnesium.  I thought that was surgery related and didn't put much into it, but as we began to research the symptoms of magnesium deficiency, it became clear this was something we needed to research further. 

Many symptoms of magnesium deficiency are also symptoms of MS.  Only 1% of the magnesium in our bodies circulates through the blood, and therefore extrapolation of magnesium blood tests does not suffice as a true test of the levels of magnesium in our bones and cells.  Many articles state that magnesium helps in the enzymatic reactions of some 300 bodily functions.  Calcium contracts muscles while magnesium relaxes them.  Magnesium is absorbed into the lower intestine and colon and helps hydrate that area, easing constipation.  Too much magnesium leads to diarrhea, so it's not too difficult to experiment on the proper levels.

The main problem with Magnesium is it is not well absorbed in many forms.  I have tried numerous pills and supplements, and also injections, with no real success.  We recently tried a product called Natural Calm, which is Magnesium Sulfate in powder form that is mixed in water, and this seems to be doing the trick.  Between the CCSVI, i.e. improved blood circulation, and the introduction of more magnesium into my system, my bowels are working much better.  No more enemas and frustrating mornings trying to clear out before a meeting.  I'm much more regular too, another clear sign of improvement.  

As 2011 ended last week and 2012 rolled in, I closed my eyes for awhile and I wondered if this would be the year things turn around.  It's been a tough road for these past 5 or 6 years.  Between the economy and this disease with all of its complications, I have wondered many times what I did to deserve all this.  The answer never seems to show up, but perhaps if I can turn it around and keep improving this year, the experience will have been worth it.