Sad news to report to all of you following this blog

Hi all,
My name is Lisa, I am Bills daughter. On November 6th, my dad received an infusion for prevention of osteoporosis. When I went to hook up his IV on the 7th,(for his TPN) he was experiencing what we assumed were side effects from that infusion - general malaise and flu like symptoms. My brother, his girlfriend and their baby decided to meet me there that evening as we had all been trying to connect for a while and hadn't seemed to be able to make it work.  Right away we could tell that the problems he was having were quite severe and after not being able to find a thermometer we sent my brother to the drugstore to buy one and some ginger gravol to try and help with the nausea dad was experiencing.
After finding that my dad had a temperature of 105.8 or 41C and having gone through a septic central line a couple of years ago I told him he had a choice - either I would take him to the hospital or we could call the ambulance.  We decided on ambulance. My brother and his girlfriend left to pick up their other kids and I followed the ambulance to the hospital.  Upon arrival, his fever had disappeared and after countless blood tests that showed nothing they decided to admit him and wait for blood cultures to come back.
By Monday the 10th they still had no idea what was happening.  I went up to see him that afternoon and had to wear all kinds of infection control clothing just in case, but everything was continuing to come back clear.

He was posting pictures of himself in the hospital on his facebook and making jokes

This one he captioned "Latest thing in leg wear. Eat your hearts out ladies"

Tuesday I texted to say I was on my way up and did he want anything.  He asked me not to come up as he had developed a cough and any amount of talking made him worse. I asked again throughout the day if he was sure he didn't want me to come up and he finally told me that he really was fine but if I was that worried about him I could come for a short visit.  I decided to take him at his word and told him I would be up the next day after work.

Well, I got a call from the hospital at 1:30 in the morning saying that he had gone into respiratory distress and that they had intubated him. In shock, I made my way to the ICU to see what in the world had happened. I immediately asked if he hadn't signed a DNR as I knew being intubated was among his worst nightmares. No DNR as they did not believe that he was in that serious of a condition when he was admitted. Thus began the long wait.... since he had not left anything in writing stating his wishes if something like this happened, I had no recourse but to wait while they struggled to find some kind of answer as to what had happened. The doctors were giving very different information to me and to my brother as my brother was very hopeful that he would be able to recover from what he viewed as a setback.  We finally managed to convince the ICU doctors to back off on his sedation in the hopes that he would regain consciousness and be able to tell us for himself what he wanted.

Finally, on the morning of the 16th he woke up. I was already on my way to the hospital for the day and when I got there he anxiously indicated through the help of his nurse (he couldn't talk as he was still intubated) that he had something to tell me and that he wanted my brother to be there and for him to bring his baby so my dad could see him.  He had already "talked" to the ICU doctor and they needed both my brother and I there... Mike got there as quickly as he could and with the doctor my dad indicated that he wanted the breathing tube removed. As euphemistically as humanly possible (gosh - these doctors need to learn to face death as an option) they asked him if he realised the probable outcome of his decision.  He indicated emphatically that yes, he realised, but wanted the tube removed.

They removed the tube and he immediately became more relaxed. He held the baby, the baby drooled all over him and he was extremely happy. The nurses had indicated to him that if he was feeling nervous or anxious that all he had to do was ask and they would offer medication for the anxiety as well as for pain.

After many injections of morphine and anti anxiety medication, he eventually lost consciousness again and they finally removed his oxygen mask and he passed away shortly thereafter with my brother and I beside him.

The final, official cause of death was alveolar hemorrhage - apparently not common in Scleroderma  but common in Lupus. So, basically, he bled out into his lungs and although they tried giving him pulse steroids, it obviously had no effect and in the end his Scleroderma got the best of him.

I know that he was an inspiration to many people (although he often lamented the lack of comments on his blog even though he could tell people were reading it).  We knew that the Scleroderma would eventually get him but the suddenness with which it came was a huge shock to all that knew him.  Even though he was optimistic and involved fully in life, this disease ravaged his body in a way that I have not seen in other people with the disease. I thought that I had best post an update to let those of you who knew him through this blog know what happened.

Love everyone every chance you get...

-Lisa

Meditation and Scleroderma

This could just as well be titled Meditation and ______ (pick a disease) because meditation has been proven to be effective in the treatment of any number of chronic diseases, arthritis  being the most studied.  Jon Kabat-Zin is undoubtedly the best known researcher in this field and has authored several books on the topic as well as founding The Center For Mindfulness at the University of Massachusetts.

On a more personal level, I have been meditating for about twelve years and I am convinced that this practice has been instrumental on both the psychological and physical levels.  Firstly, it has been the most important tool I have for stress reduction.  Of course I'm stating the obvious when I say that having a chronic disease such as scleroderma can be extremely stressful.  Meditation can help by making you more aware of your emotions.  The more you meditate the more you are able to see negative emotions as soon as they arise and, like the proverbial  snowball rolling down the hill, it's easier to stop emotions at the early stages before they grow into something that's harder and harder to control.  Meditation accomplishes this through the practice of watching and quieting the mind.  There's nothing mysterious or mystical about it. At the simplest level, it's sitting quietly, paying attention to the breath, watching distractions, both internal and external, as they arise, acknowledging them and then going back to watching the breath.  This ' watching of the mind ' make us more aware of our emotions and how they operate and we thus gain more control over them.  

As a concrete example, I am constantly dropping things on the floor because of poor mobility, strength and grip in my hands.  This can be doubly frustrating because I am unable to bend over to pick anything up off the floor which means every time I drop something I have to go get my reacher to pick it up.  Now this often becomes frustrating with the potential to make me angry which, in turn,  could lead to a high level of stress.  But it doesn't.  And that's because I am able to spot the anger at that very first instant just as it begins to arise and before it gets any worse, I simply acknowledge it, stopping it in its tracks before it takes me over.   Without my meditation practice I am absolutely certain that all the hurdles I face each day would make my life much more unpleasant.  

It's also common knowledge that stress contributes to the level of pain that we experience.  Meditation, as noted above, can decrease stress and that means less pain.  It's as simple as that. 

Again, based on my own experience, I believe that it may be possible to directly influence things like Reynaud's.  Initially my Reynaud's was quite painful and I would spend several hours a day holding onto one of those microwavable heat bags to keep my hands warm and ease the pain.  But then I started a visualization practice, a form of meditation, where I pictured the blood flowing through the vessels in my hands and after I'd practiced this for some time, I can't be more specific than that I'm afraid, my Reynaud's symptoms started to lessen to the point where I no longer needed the heating pads.  That was over three years ago now and nothing has changed.  Of course this is totally anecdotal and not proof by any means that it was my visualization practice which caused of the lessening of my symptoms.  On the other hand, it certainly didn't do any harm and I continue to use a modified version of this practice for other symptoms.

Sorry for being so long winded here but, as is probably apparent, I truly believe that meditation can compliment the other treatment options available to individuals with a chronic disease and the only side effects are that you will be a happier person for it.   If you've never tried it, please consider giving it a chance.  You've nothing to lose.  Here's a link to some simple guidelines for establishing a meditation practice.