Jim's Place

The Magic of Christmas

Well, as has been so common of late, I woke up feeling awfully sick. But yet, I still have my joy... I still have a song in my heart... How can that be, Jimbo?! No doubt, I'm disappointed that I wasn't well enough to be in Texas to spend Christmas with my family...and being so sick certainly gets old! But, I'm okay... To still have my spark and enthusiasm for life when I feel like this is not only a Christmas miracle, but an everyday miracle.

Yes, I still feel the hurts, the pains, the frustrations and overwhelm that are inevitable when you're sick 24/7. This time of year, I especially feel that churning... ("Another year alone? Come on, Jim, you've got to find someone to share your life with!") But yet, I've still got my child-like heart and an excitement for those things I can still do...not that far away from that kid of so long okay who couldn't wait to open his big present sitting under the Christmas tree...

This year in particular the Holy Spirit stands out as being the best gift this kid has ever received... My body may be sick, but my spirit is well. I see so many people bitter, angry and just downright unhappy. More often than not, it's clear to me that the biggest cause of their misery is a profound spiritual void. My heart goes out to them. I've been down that road. Even though I was a Christian in my beliefs, there was still something missing and I just couldn't put my finger on it...

That something was the joy of the Holy Spirit. I've come to believe that having the Holy Spirit in your heart is a basic human need. If it's not there, you're going to hurt. And it's a painful void that even the best things the world has to offer will provide no more than a promising distraction. My prayer, is that everyone I know receives this same life-changing and even life-sustaining gift. I think I'm pretty darn good with my perspective, coping skills and determination, but frankly I just don't know how I could have come through such a marathon of adversity without the profound presence, strength and joy of the Holy Spirit.

As I'm sure you have surmised, my Christmas is going to be special after all. I'd sure like to feel better and I'm praying my new docs can figure out what the heck is going on, but in the meantime, I'm going to make the most of the magic of Christmas. I felt that magic as a young child and at the age of 60, it's still there... but not because of a brightly-colored package with a big bow, but because of a baby in a manger long ago. An innocent child, the Son of God, sent to save the world. I celebrate Christmas to honor the birth of Jesus, but also to celebrate that He still saves me every day of every year... Yeah, I guess I'm pretty lucky, because I get to open my Christmas "present" every single day of the year... :)

Way back in the summer of '96...

The first time I really started to think something was wrong was the summer of 1996. In 1994, at the age of 39, I took up bicycling as a serious fitness activity. By the end of 1995, 50-mile rides were almost routine for me. At 180 lbs, I was in the best shape of my life. My computer career had really taken off and I even joined the choir at my church. I had a great group of friends and we would frequently get together for barbecues, birthdays and pool parties and even go camping.  And finally, I felt I had recovered from my divorce in 1993. I really loved how my new life was coming together and was looking forward to finding someone to share it with...

1997 - Constant thyroid imbalances

But as the months went on, it became increasingly difficult to ride the bike. Clearly, my energy was fading. By the spring of 1997, I was barely riding the bike. Since I was being treated for a low thyroid condition, I suspected that might be the issue. Sure enough, the lab tests indicated I needed to increase the dosage on my thyroid med! I also decided to see an allergist and get better treatment for my asthma and allergies. I was excited to think that maybe I had a handle on my health issues and that I could finally get back to riding the bike! I did start feeling better, but there was still something obviously wrong. The next round of lab tests indicated my thyroid levels were now too high! What?! So my doc then lowered my thyroid dosage. That cycle would repeat itself for the rest of 1997 and into the spring of 1998. Eventually, my endocrinologist gave up, saying she simply didn't know why we couldn't get my thyroid condition under control. By the summer of 1998, I was up to an all-time high of 267 lbs and still not getting better. I was no longer riding the bike and now it was becoming a struggle just to show up for work...

1998 - Sleep apnea diagnosis and then the big comeback of 1999

I had been suggesting to my primary physician that I thought I should be checked for sleep apnea and he finally agreed. In July, I had a sleep study done and bingo! I not only had sleep apnea, but a very serious case - averaging 52 events(stopping breathing) per hour during the study! No wonder I was exhausted! I was thrilled to get a diagnosis and looked forward to getting on the CPAP machine and getting back on the bike. I made marked improvement over the next few months and felt confident enough in January 1999 to sign up to do the Leukemia Society's 100-mile bike ride in Santa Fe, New Mexico in May. I had a rough time staying with the training, but managed to get my weight down from 267 lbs to 233 lbs. I had to dig awfully deep just to finish the ride - 106 miles - but when I crossed the finish line I felt a huge sense of victory... maybe I'd finally conquered illness and could now get back to just living life...

The crash of '99  - from generic thyroid medication?

But my health took another dive late in the summer of 1999. The fatigue was worse than ever. When I saw a new endocrinologist he concluded that it was simply due to taking a generic thyroid medicine instead of the name brand. Apparently, the generics could fluctuate from one manufacturer to the next. Wow! That made perfect sense! No wonder I couldn't get my levels stabilized in 1997! So he started me on the name brand stuff - Synthroid - and I quickly started planning my next comeback...

I certainly felt better on Synthroid, but as I rolled into the Spring of 2000,I still wasn't back to my old self - not even close. No one seemed to have any ideas so  I just tried to push through it. I did pretty well, enjoying a couple of camping trips and doing stuff with my brother Danny, who was living with me while he went to school. My weight was back up and of course my doctors kept insisting that I wasn't going to get my energy back as long as I was heavy. That sounded logical, but my instincts told me there was more to it than that...

2000 - The tumor in my neck

In the fall of 2000, I noticed a lump on the left side of my neck. I thought nothing of it until it increased to about an inch in diameter. I had a biopsy done that was inconclusive, but my ENT doc said it had to come out. The surgery went well and the conclusion was that it was a benign tumor that she was sure was the cause of my fatigue. By the Spring of 2001, I was certainly feeling better so maybe that was it! Time to focus on getting the weight off and getting back on the bike! I did much better going forward, doing things like camping and even returning to my old hobby of flying radio-controlled sailplanes. But by the end of October, things started going south yet again...

2001 - Diagnosis of pituitary failure

By November 2001, I was sicker than I had ever been. I had to go on short-term disability leave from work. Eventually, I was scared... it felt like I was dying... My primary doc insisted it was simply depression and insisted all I needed was to start taking an antidepressant. I had been suggesting for over a year that we check my pituitary gland but he refused, always reverting back to his depression assumption. But I found another doc who would check it and sure enough the tests confirmed what I suspected - complete pituitary failure! Finally, it was all starting to make sense! So I started on full hormone replacement and of course started getting excited about kicking off 2002 with my next comeback!

2002 - The big crash and the end of my computer career.

My excitement didn't last long... I kept waiting to get better but before long, I was back on disability. For all that spring, I kept going back to work, then back on disability, trying to work, then back on disability. I gave it everything I had, but clearly wasn't able to do even the simple tasks in my computer job. I was finally let go in August. I spent the next couple of years trying to get answers but no one could explain why I was doing so poorly - when it was assumed that with full hormone replacement the pituitary issue wouldn't keep me from being able to function at an almost-normal level.

2004 - At my heaviest - 330lbs. And then the big comeback of 2005.

By the summer of 2004, I had ballooned up to 330 lbs and could hardly even stand on my feet for more than a few minutes. My  endocrinologist didn't know what else to do, saying that he was sorry, but that this was probably as good as it was going to get... and that I needed to be realistic and just accept it...

In the fall of 2004, I received a new CPAP machine - one that had an automatic pressure sensor. I figured it might work better than the old one and sure enough it did! I felt such an improvement that I went to the bike shop and bought a hybrid bike! I was too heavy to hop on my old road bike but the hybrid worked like a champ. I was only able to go around the block, but the important thing was that I was back on the bike! That led to my big comeback of 2005. Along with the new CPAP, and better managing my hormone medications, I was able to begin working out consistently. By summer, I was back on my old road bike. Using the Body-for-LIFE program I dropped over 100 lbs! Clearly, THIS comeback was the real deal! Finally!

2006 - First attempt at trying to restart the pituitary gland

I had a rough time in the Spring of 2006, which was expected since it was allergy season, but I figured by summer I'd be back on track with my fitness program. But I kept waiting and I wasn't feeling better. My  endocrinologist again insisted he was doing everything that could be done and that I couldn't blame everything on medical issues. What?! He strongly suggested that I needed to see a psychiatrist or I wouldn't get better. The psychiatrist laughed at my doc's assumption, saying he knew what depression was and I didn't have it! He said he was amazed at how happy I was, considering that I struggled with illness for so long. I figured it was time to get a new endocrinologist!

The new endocrinologist gave me a stunning assessment on our first visit. His theory was that maybe my pituitary gland was actually still functional, just mostly dormant. If that was the case, occasional activity from the pituitary gland would cause all sorts of erratic hormone levels making it impossible to get my levels dialed-in and explaining why I was still struggling so much! I was stunned by his theory, but it sure made sense! I then had a pituitary stimulation test done and son-of-gun my pituitary gland responded! Unbelievable! He then proposed that we try to restart the pituitary gland using a long process of slow withdrawal from the hormone medications. Although there was a slim chance that it would work he insisted that it was my only real chance to get better. So for the next few months, I gradually tapered down, hoping this would actually work restart my pituitary gland.

2007 - The 2nd attempt to restart the pituitary gland

The  specialist had warned me that tapering off of hormone medications such as Cortef - which is what was being used to maintain cortisol levels - could be as rough as withdrawing from heroin. I was skeptical of his warning until I started getting down to the lower doses. I felt exhausted and started experiencing anxiety, claustrophobia and sleep difficulties. Eventually, I reached my limit and increased my medicines back to the old levels.He was disappointed that I had aborted the withdrawal, but I just couldn't live like that. In the Spring of 2007, I figured I'd try the withdrawal process again, but by April, the side effects were so severe that one night I found myself so desperate that I called a suicide hotline. I wasn't suicidal or even close to it, but I was so anxious and emotionally being stretched that I really needed to talk to someone - now! - and since it was 3 in the morning, I couldn't call friend or knock on a neighbor's door! Anyway, I abandoned that withdrawal attempt as well and figured I'd just have to live with my greatly diminished health...

2008 - The 3rd attempt to restart the pituitary gland...and then a miracle.

In January 2008, my doc suggested we try the withdrawal process one more time, but this time we would go much slower. The plan was that we would take a year instead of just 6 months and hopefully avoid the severe side effects that I experienced before. I figured I had to give it just one more try... After 6 months, I was encouraged because I wasn't having any severe side effects. Then in August, my doctor informed me that the lasts lab tests showed that my pituitary gland had restarted! Amazing! Miracles do happen! Now, I truly do have a new life!

2009 - Diagnosis of Celiac

For the rest of 2008, the focus was on continuing with the withdrawal process until I was completely off of all of the hormone meds. In the Spring of 2009, after being on full hormone replacement since 2001, I took my last dose of Cortef. Because it was allergy season, I wasn't surprised that I was still dragging. I figured by summer I'd  be back to riding the bike and feeling the full benefits from my restarted pituitary gland. But by April, I was as sick as I had been in years. It was the same flu-like symptoms and fatigue that I had been told all these years was because of the pituitary disorder! Apparently, that wasn't true! I was stunned! What the heck happened?! None of my docs had any idea and once again I decided I'd better put on my doctor hat and sort this out...

I had unexplained skin rashes that first appeared in 2001 and my dermatologist never was able to effectively treat them. They had been better in recent years, but were now back with a vengeance. I then started asking myself what condition similar to mine was treated with any of the meds I was taking for the pituitary issue and thus would flare up after withdrawal? After lots of research, I came across info on Celiac. I'd never even heard of the illness, but sure enough it  sounded like what I was going through! When I saw the part about Celiac causing skin rashes, I knew I was really on to something! Eventually, tests confirmed what Dr. Jim (me!) had diagnosed. I started on a gluten free diet and by the end of the summer I was rolling up miles on the bike like I hadn't since 1995...

2010 - The big comeback and my first 100-mile bike ride since 1999.

The spring of 2010 was the usual downtime due to the allergy season, although it hit me harder than I expected. But by summer, the pollens were down and I was back to putting in long rides on the bike. I was clearly far from well, but by putting most everything else on the back burner I was able to do enough training to complete a 100-mile ride in October. Shazam! Now we're talking! I really looked forward to 2011, hoping I could take my fitness back to the high level it was in 1995. I still hadn't made it below 230 lbs, but that sure beat the heck out of 330 lbs in 2004!

2011 - Back on the couch

I wasn't surprised that I was derailed again by illness as the 2011 pollen season unfolded... this was pretty much standard procedure every year. It wasn't like what most people think of when they think of allergy issues. I had started every day since early 1996 with a significant level of sickness. Triggers such as gluten and pollens raised it to a profound level. The various medical conditions along the way certainly made things even more debilitating but even on my best days, I still was far from normal functioning. My best time of year was usually August through October, but in 2011, my good time of year never showed up.

2012 - Still on the couch

I rode out the allergy season in 2012 mostly on the couch, but when summer arrived I once again didn't see my usual improvement. My thyroid disorder, Celiac, sleep apnea and asthma all seemed well under control so I just didn't understand why the underlying illness continued on at such a debilitating level. I then started to reassess my medical history and look for a common thread. Clearly, most all of my stuff over the years was driven by an underlying autoimmune condition - where the immune system attacks the body. My doctors pretty much agreed, but still had no answers as to why I still felt so sick much of the time. The general diagnosis was autoimmune-driven chronic fatigue, but no treatment was prescribed. Basically, I was told I'd  just have to live with being sick and that compared to their other patients they thought I was doing extremely well! Small consolation!

2013 - The big comeback of 2013...and then a rough 2014

I then figured that my best bet was simply to address the main triggers - gluten and pollens - with the goal of minimizing the flare-ups of the autoimmune condition. I had been getting allergy shots for months and made it a goal to stick with them. When the new year rolled around, I was determined that 2013 would be my big comeback year. Based on the previous 2 disappointing years, it took a lot of work and faith to get my confidence back. But I stayed with my fitness program and noticed right away that this allergy season wasn't derailing my exercise program. The best I could figure is that the allergy shots had finally provided the maximum benefit and that was helping keep the autoimmune condition at bay. I still felt sick every day, but at least it was workable. However, I had enough energy to do my daily workout, but not usually much more than that. So I pretty much put everything else on the back burner and made getting the weight off my top priority.

By November, I had dropped an amazing 90 lbs in 2013! I was thrilled to see things finally come together! I was even able to participate in a couple of time-trial bike races! Holy smokes, this was a whole new life! I got back a few pounds over the holidays, but started 2014 with tremendous excitement, anxious to get those few pounds off and within a few months finally be back at my normal weight. But I had an unexpectedly rough January and February with the daily sickness usually being at a profound level. I was still able to get in a workout here and there but once again illness was starting to derail my big comeback. I had missed my monthly allergy shots last December because I went out of town for Christmas and figured that maybe that was a key factor behind this rough spell. But I had been back on allergy shots for over a month now and wasn't getting better.

I then started seeing a new rheumatologist in March, and he was confident that he could help me get much better. He said that the constant sickness was attributable to my Chronic Fatigue condition and was amplified by my systemic autoimmune disorder. That sounded logical and I was excited about the medication that he insisted would help me a lot. The medication - Nuvigil - was originally designed to treat people with issues related to working night shifts, but had been also shown to be effective for people with conditions like mine. At least, according to my new doc's experience with his patients.

The Nuvigil certainly did take the edge off the sickness and I was excited to think that it just might greatly increase my functionality. But as summer approached, I was still too sick to resume my exercise program with any consistency. He increased my dose to 250mg and I figured maybe the Nuvigil just needed more time to reach full effectiveness. But the next thing I knew, the summer was over and I again found myself on the couch wondering what happened to make 2014 so much rougher than 2013! My allergy doc mentioned that pollens were worse this year and I'm sure that played a part, but there's just got to be more to it than that...

So, here I am, in 2014, a few days before Christmas, still looking for answers. I did a little better in September and October, getting in quite a few bike rides. I had hoped that meant I was on my way back, but then my body inexplicably took a nosedive at the beginning of November, and I've been mostly on the couch since then. I've been sicker than I have in years and I don't have any idea why. For the first time in over 20 years, I was too sick to fly back to Texas to spend Christmas with the family. It seems so bizarre that despite all of the breakthroughs and discoveries along the way, that after 18 years of fighting illness on a daily basis and seeing doctor after doctor that there is yet another medical mystery to solve.

Funny, but despite illness derailing so much of my exercise all these years, I still thought of myself as an endurance athlete. Even when I was 330lbs and it looked like I wasn't going to be able to ride a bike again. I'm anxious to find out what's making me so sick lately, so that I can get back to riding the bike instead of the couch! It seems like it might be another endocrine issue, but who knows. How bizarre all of this seems... But I'm still here and I've still got a fighting chance to get my health back. I've always marveled at my fitness friends who were able to complete a 26.2 mile run, but then again, I think they probably marvel at my endurance as well. Their marathons took a few hours, but I'm still struggling to complete mine... the toughest endurance event of my life - a marathon that began long ago... way back in the summer of '96...

What's all this churning about?!

Anyone with an "invisible" chronic illness is painfully familiar with that churning inside that comes from the need for validation and support - for those you care about to accept your illness as being real and every bit as debilitating as you say it is. Over the years, I've come to terms with that and feel that I rarely let people who don't "get it" get to me. However, there has still been a daily churning that had puzzled me. Am I still worrying about what other people think? Am I letting the world get to me, just because I don't look sick? Perhaps, those are still issues, but they aren't really at the heart of this particular internal turmoil...

I've got a good handle on the relationship issues associated with an invisible chronic illness and I think I've learned to cope with it all pretty well. I've accepted that this is just a harsh reality and I try to focus on what I can do instead of what I can't do. Basically, I'm quite a happy camper considering these very trying circumstances! So where's the inner turmoil coming from?! In a nutshell it's quite simple. When I wake up with that profound run-over-by-a-truck sickness, all sorts of alarms and sirens go off! It doesn't matter that this has been a daily routine for many years, my brain is still screaming "Danger! Danger! Something is terribly wrong, Jim!" Of course, I know that! But it's like hitting your thumb with a hammer. It doesn't matter how many times you've bashed your thumb before, you're still gonna say "Ouch!". You're still going to have to deal with the shock to the system, the pain and the healing - and questioning how could I be so clumsy?!

Basically, the churning for me consists of the ongoing need to square things with myself. Not to gain anyone's acceptance, approval or support, but simply to come to terms with the inevitable questions and confusion that comes with an obscure, erratic and debilitating illness...

Do I have the right diagnosis?

Shouldn't I be doing better than this?

Are my doctors using the best treatment or should I find new doctors?

Are they missing something really big?

Is there something I'm doing or not doing that's making things worse?

Is this just the way life is going to be?

I hope this insight is helpful. It can be easy to assume this kind of emotional turmoil is because of what someone said or a self-esteem issue or that you have the wrong perspective - when it's simply part of your inborn survival mechanism being kicked into overdrive by a relentless illness. Trying to ignore or brush it aside is kind of like a fire alarm going off and not even checking to see if your house is on fire...

A Christian nation?

I think even an amateur historian would find indisputable evidence that America was founded on Christian and Biblical principles. A truly tolerant non-believer would accept that reality and not raise hell about the various Christian symbols, traditions and influences that are ingrained throughout the American system of governance.

To remove all vestiges of Christianity from the state would rip the heart out of what has made America the most enduring and shining opportunity for freedom, liberty and prosperity in human history. Instead of the utopia that atheists suggest it would create, the truth is that it would be hell for everyone - even those who don't believe in heaven or hell.

"Bah Humbug!"

Usually, by the first of December I'm "Mr. Christmas" - excited about sending out Christmas cards, putting up lights and decorations and visiting family and friends. Even with the illness, I'm usually thrilled about the holidays. But so far, I'm just not into it at all.

A psychologist might assume it's depression, since a hallmark of depression is losing interest in things you used to love to do. And when you're fighting a chronic illness day-after-day and even simple tasks have become overwhelming then of course you're depressed! Right?!

Well, not exactly... It took me many years to figure out what was going on underneath the surface. I'm not saying depression is not a common factor in scenarios like this for many people with chronic illness, but for me that isn't it...

In a nutshell, it's basically the self-preservation mechanism kicking in. When a person goes through extended periods of stress, pain, fatigue, etc. you reach a threshold where your brain refuses to voluntarily do anything that has even a little bit of stress/pain included. That includes even the fun stuff. It's not an attitude problem. It's not an outlook issue. It's not that you need a new perspective. It's simply that you need a break... You might be able to push through a few tasks, but your brain is going to fight you all the way.

Now, it can certainly be helpful to try to adjust your perception of a task. There have been many times where I've been able to work through this self-preservation roadblock by telling myself that the task isn't as hard as I perceive it to be or just taking the approach that I'll just give it 5 minutes and then I can stop if I still don't feel up to it. Of course, this chunking big tasks into smaller tasks is pretty much a daily necessity for anyone with a chronic illness, but my goal here was mostly to illuminate that even with the best outlook, perspective, determination and tons of optimism that with a chronic illness you're likely to be living close to your brain's limit of stress. And when you reach that limit, even the fun stuff might be a challenge...and it's not a matter of mood or state of mind, but simply your basic human need to get a break from the pain...