Tuesday, October 30, 2018

Sorry for the extended silence

Wel it has been far too long since my last post. I have many time thought, even planned, on writing something sooner but obviously that never happened. Sure, getting caught up with summer vacation was a factor, and the process of getting back into a routine afterwards, but I cannot say that was the sole reason. As I have stated previously, one of my main intentions for this blog was to represent the entire journey of the protocol, not just the success at the end. My previous posts have covered some of the challenges and complications. I think it’s fair and accurate to say the protocol is difficult and tricky. There is a fine balance between PTH, vitamin d, and calcium. There are others as well, but that seems to be the big three. Those three are in addition to the already present challenges due to the condition. I cannot say that it is true for all, but it does seem that there are others in a similar situation. The protocol requires consuming 2.5 L of water, everyday, which would be challenging for most, but is compounded by the loss of bodily functions due to the disease. In addition, a substantial amount of elemental magnesium is necessary, which can negatively impact bowel control.

This disease takes away memory, strength, mobility and replaces it with pain and discomfort. I think it’s very difficult, more like impossible, for someone without MS to fully understand extent of the continuous pain. The pain combined with the quantity of water makes for less than enjoyable nights. Despite sleeping, going to bed at a reasonable hour, to wake almost as tired as the previous day. To roll out of bed knowing that this day will be draining physically and emotionally once again. Not wanting to open up and share with those around you, thinking “What’s the point?” or not wanting to feel like you are burdening others with your problem...a problem with no solution. It’s a bit of a self fulfilling prophecy: not sharing with those around that want to hear, listen, support and at the same time feeling forgotten, alone.  In a previous post I stated one loses hope with MS. I understand the need to open up and include those around me to help combat that feeling. Unfortunately, its not that easy when it feels that everything is just one problem, one challenge after another. Feeling like it might just be easier, better for all, if I just keep these things to myself, so that way only I have to deal with them.

I want to feel as if I am not alone in dealing with this condition, yet somehow I am reluctant to include others, open up and share all of the trials and tribulations. I suppose partially because I feel it will seem like I am constantly complaining. Another aspect is believing that if those around me really knew the whole picture, they might feel the need to feel pity. Even more troubling is the possibility of making sad those around me because there is really nothing that can be done currently. It feels as if that would cause the sadness to expand unnecessarily.

I want to be part of the solution, not the problem. Hopefully this blog, the protocol can prove to be the solution for me and hopefully many others...

Wednesday, May 9, 2018

Looking forward to May and the days that follow...


Well May is here and having hope once again. I have been struggling with my calcium and creatinine levels. It has been suggested that I tried increasing the quantity of my daily water intake. So I am now trying to do 3 liters of water each day instead of 2.5. So far, this has been successful. I think ending up short when striving for 2.5 was a problem; however, but the additional 0.5 liter gives me a little more wiggle room on those days when I do not obtain the desired goal. It has only been a couple of weeks, but both numbers have gone down. Not substantially, but I am curious to see what it I like after a couple of months, hopefully even better.

 

So getting my test results back at an acceptable level is the first bit of good news. Another change is I am now working with Dr. Anderson from St. Louis. During our first meeting, which was over an hour, long, he took the time to explain what we would be doing, and why. More importantly, he also described what could be done when the expected results did not happen. In addition, he had me do several tests that I had not done previously, and the results were very encouraging. One of the tests was the ANA, which indicated that I should not require additional quantity of vitamin d for the protocol to be affective. The other was the 24 hour calcium test which revealed that my body is safely able to process the current level over vitamin d, and there is room to increase once again, safely. So I have once increased the amount of vitamin d. I am not yet at the levels where the protocol will be effective, but it does seem like there are benefits to the additional amount. There is some reassurance to having an understanding as to the question “why do much vitamin d?” As Dr. Anderson said, I am once again on the right path, a comment I really believe and feel to be true. As said above, I am once again excited and looking forward to the future. Cross fingers, and let’s see what’s in store for me.

Tuesday, April 10, 2018

April is here, yeah Tax Day....not!!

Well April is here, and continuing along with the protocol. I am checking my calcium every three weeks, and so far everything is looking good, or at least not bad. I do wish my calcium was slightly lower, but at least it is not at a level in which I need to be concerned or stop the protocol once again. so nothing significant to report as the moment. It is good that there is nothing negative to comment about this time, it is frustrating that there is nothing positive as well. So going to try to stay positive, fingers crossed, and hope for the best. I have a couple of walk video that I will post shortly. Once again, do not really see anything different between these and previous once. Remaining grateful that there is nothing negative, but slightly disappointed that they do not include anything positive.

Sunday, March 25, 2018

time is flying by...

So February came and went, and March is almost finished. I do wish that there was some news to share. At the same time, not having anything to say could also mean that there is nothing negative to report. Trying to look at things positively I suppose. My calcium is still a challenge. At least it is not above what's considered acceptable, high, but not dangerous or alarming. Still trying to remain hopeful and optimistic about visible and noticeable improvements. Other than that, just continuing along day by day. I want to see, feel, know, that things are getting better. Trying to be patient, just not exactly my strength...

Friday, February 9, 2018

Goodbye January

Well the month of January for the year 2018 has come and gone, in what feels like a blink of an eye. I do wish that my progress from the protocol was happening as quickly. My calcium is still high, not over the threshold, but bumping right up against it. For that reason I am still taking significantly reduced amounts of vitamin d. I mentioned previously that I was adding PectaClear. I will acknowledge that the first couple of times it left my legs feeling like the were encased in lead. Walking was so difficult, and I fatigued significantly faster. After a month the experience is different. I am not sure if this is because I am getting accustomed to PectaClear, or maybe it is being effective, and the heavy metals are being removed from my system. So without the lessening of these undesired compounds in my system, my body feels negativity because of the PectaClear. I have also added Disolvatol in response to the kidney stone. I am also hopeful that this will help reduce the calcium levels in my blood. I was supposed to have a doctors appointment that had to be rescheduled because of an unexpected event on his part. So no date yet when that will happen. When it does I will request for the some tests to monitor how my calciums levels are currently. Hopefully they continue to decrease so that I can slowly increase my levels of vitamin d. I am trying to be patient and remain hopeful, but it is difficult when one is not noticing any improvements, or reason to be excited. I have been timing my walk from the car to the office in the morning and from the office back to the car in the evenings. Trying to use this as an indication of how I am doing, how things are progressing. Something a bit more measurable than my saying I am "feeling good". For the past month my times I have higher than I would have liked. While not my worse times, usually 15-20 seconds slower than what I would have called my previous "normal" times. Last night I was 20 seconds faster in the evening than my morning time. It was the first time in over a month my time was back within my previous "normal" range. I am really curious to see the time next week. Was this an aberration,  or will times remain in the previous range. Better yet, will the time to continue to decease, giving me a positive indication that I want, need.

Friday, January 12, 2018

hoping the best for the new year

Well we are nearly two weeks into the new year, already. So I completed my first blood test, and unfortunately my calcium score increased to 10.1. So while its still in the "normal" range, it moved in the wrong direction, and is vey close to the upper limit of the range, 10.2. So a little disheartened and frustrated as I am really trying to do everything correctly, and yet my scores are going in the wrong direction. This was with only 30k of vitamin D, so very far away from desired amount of about 80k that it seems will be required for my body to really improve from the protocol. So after a temporary frustration and being down, now trying to figure out what else can be done to lower my calcium score as  stopping the protocol is not an option. In addition, taking this small dosage is not really helping me get better. Sure, it might be preventing me from getting worse, but that's not the same thing as getting better, getting a quality of life back. So while I had the disappointment of the lab work, I did receive my shipment of magnesium and PectaClear. The day after taking it, I have noticed that my legs feel so much heavier, and my walk is slower, much more difficult. I have looked in the groups, and other people have noticed something similar, being told that is an indication that it is actually working, doing something. I am not sure if that really is the case as it is too early to notice any differences. I will remain hopeful that this feeling are because of something positive happening, moving me one step closer to getting better. I cannot really think of anything else of significance to share.  So let's see what the next lab work shows, and wha new challenges and obstacles there will be to conquered while on the protocol. Thankfully I think I have stopped losing weight, but it seems that I am regaining it slower than I would like, unfortunately.

Friday, January 5, 2018

2017 in review

As I was researching the protocol I was able to find plenty of testimonials about how well someone was doing after being on the protocol, typically for years. Unfortunately, none of these included a depiction before starting, or updates showing improvements while one the protocol. providing this type of information was one of my main motivations for this blog. Giving some insight of the starting point and the journey, just the final outcome. Admittedly, I have not done a very good job sharing the bad ties, my difficulties. It has been brought to my attention that this doing more harm than good. People need to understand when they are having a bad day, a rough time, that they are not alone. That while it might not be desirable, the rough times are a typical, unavoidable, part of the protocol. That it is only temporary, that the final goal is still obtainable. 

So here are some of the videos I took during showing how I walked.. Some days are better than others. Once again, I am trying to stay positive, optimistic about 2018.

Before started the protocol

First month

The second month

The third month

Month Four

The next month

End of year

So there is a glimpse of 2017. Once again, trying to document the before and during of the protocol for others trying to learn more about the protocol. So here is hoping that next year the videos will include a little less of a limp, increase stability and a faster pace.