Hey Everyone!
To recap where we left off, I
finally got on a new Biologic Medicine in order to help me with my condition. Furthermore, I was temporarily on Prednisone to help me with my condition until this new drug kicked in.
I gained a much needed 35lbs of healthy weight back. I was just unsure if it was the Prednisone or the new Biologic drug that was helping my condition.
In the last health update, I also shared that whenever I come off of a drug that puts me through withdrawals, I get pain in my colon for a few days.
Likewise, when I take a medicine like an infusion, I also temporarily have pain in my colon. For example, when I came off of Tylenol, it hurt for a couple of days. Also when I took a Reclast infusion or Iron Infusion, my colon also hurt for a couple of days.
I shared this, because I was scared to come off of the Prednisone. Coming off of the Tylenol and taking a Recast infusion was annoying, but not the end of the world. Prednisone on the other hand is extremely harsh, and I was simply
nervous to come off of it.
Not only would it be harsh on my system to come off of it, but also I wasn’t sure if it was the Prednisone that fixed my health or the new Biologic Medicine.
I finally got off the Prednisone on November 28th.
As suspected, it was much more difficult to come off of compared to anything else. It was also way more harsh than taking other infusions.
On day three, I poured out blood into the toilet, it was so harsh. However, with each passing
day, my colon got better and better. As long as I don’t run into a situation where I can’t walk due to running out of breath, and as long as I keep this healthy weight on, I feel that I’m fine. Remember, I recently went 6 months without being able to walk more than 14 feet without collapsing on the couch or bed due to becoming out of breath. This was mainly due to internal microscopic bleeding that was not letting me rebuild my iron and hemoglobin stores. Even Iron infusions would work at that
point.
A month has gone by since I came off of the prednisone, and I am still walking 2.5 miles a day and doing crazy stretching each day. Furthermore, I haven’t lost a single pound!
That’s crazy great news and the absolute most important thing to me.
However, since I came off of the Prednisone, I am at times very achy all over.
When I was on low dose Prednisone, even at 2.5mg per day, I felt like Superman. I literally thought that from all of the stretching and
exercising that I was doing at the time, that I was going to become younger again like the days before I got sick just a mere 5-6 years ago.
However, when I came off the Prednisone I was back to being achy all over at times.
The good news is, all of the muscle and endurance I built up stayed. Furthermore, all of the stretching progress stayed.
It’s crazy the difference though from being on Prednisone and not being on it. I’ve stated in Newsletters that I always have a back
up if I run into problems. I can just go on Prednisone and it works for me. However, after seeing what happens when I get off, even from just 2.5mg, it makes me feel like it would not be good to do long term. If I crash like this after stopping only 2.5mg, then it’s obvious to me that the long-term impact wouldn’t be good.
I am so achy at times, it’s crazy, and if I were to just take 2.5mg of Prednisone, it would take all of that away. It’s so tempting, but you know me, heck no.
I
can still do all of the exercises though.
It’s kind of comical. I’m like an old man getting down onto the Yoga Mat. However, when I start going it’s easy and I just look like a youngster. The stretching progress is there, and I just have to work with the aches. I lock into the stretch progressions that I made with no problem, lol.
Also, when I go to walk 2.5 miles, getting up off the couch is a chore from being achy from coming off of Prednisone. However, when I start walking, I
have no problem whatsoever, until I go to lay down back on the couch lol.
When I was on Prednisone, everything was so easy. There would be no aches and I wouldn’t think twice about exercising. Now, there is a, “I don’t want to” component involved since I came off of the Prednisone. However, I always do it. It’s like I want to be lazy now, but on Prednisone, there wasn’t even an inkling of laziness.
It’s not like I’m pushing myself too hard in any incident.
I was so couch
ridden and dormant for so long. When I got on Prednisone and started stretching again, I had to be very careful. I had to get my body used to stretching again and past the potential injury phase. For example, from being dormant for so long, I had to make sure I didn’t get a back or neck injury as I was gently getting back into these semi-advanced stretches.
I got scared a couple of times, but I was completely fine. I passed the danger point, and my body is now able to do amazing stretches
once again. For example, upward facing dog I had to be careful of my lower back. At first, I just got on my elbows for a few seconds, and I did it that for a week. That is the top image below. I then went longer and longer. Next, I got onto my hands with straight arms. Now I can go full out as long as I want without any issues. That’s the second image below. I bypassed the danger of injury phase by going slowly. I was doing that with all of my stretches.
I think also my muscle memory helped my situation. I did so much stretching in my past, my body just locked right back into it. I also used to lift really heavy weights before my Raw Days. I feel like my muscles just jumped back quick from muscle memory there too.
I do still have hope though that I can get my body back to being like it was before I got sick in a much younger state. I
haven’t given up yet. My body may simply need to balance out from the Prednisone and maybe it will take time. Plus the exercising I won’t give up, and I hope that’s my ticket to fixing my body.
At times, I feel like I am there, but at other times, it’s the total opposite.
I’m definitely stronger and more muscular. I’m still doing the squats on the arm of the couch with no weights lol. I’m protecting my knees by not going all the way down. At some point I’ll try doing the squats
from the regular cushion of the couch instead of the arm of the couch.
I’m also doing a warrior stretching position where I barely go down at all on my knees. I tried to go a little lower today and it seemed to be cool as I build up strength. In the beginning I went fully down on my knee in the warrior position without thinking. I used to be so used to it that I just did it. I slightly messed my knee up. However, it fine in a day or two.
Here are some of the advanced stretching
moves that I do. They are pretty impressive.
Now this next image below looks pretty crazy, and you may think to yourself, how on earth do I do that so well in such a short period of time. To be honest, it is the only stretch that I ever kept up with, even when I got sick. It was a necessity for me. I’m telling ya, when I go into this position below, I can seriously unload 5 tanks of gas, lol. (Yeah, I know, too much information!)
There are times where I feel absolutely wonderful and I can’t believe it. When I’m just walking, I can turn my head and spine so far from all of these twists that I am doing and it feels great. Sometimes I’m not even achy, but other times I am.
Don’t get me wrong, I’m doing absolutely fabulous. You have no idea how great it is to go on a 2.5 mile walk when I couldn’t even walk more than
half the distance in my house before. It’s absolutely wonderful and I shouldn’t be complaining. I also go up a nice sized hill twice on my walk. I also healed an injured leg from being dormant in the hospital bed. That’s a whole other story.
So it’s now a month later coming off of prednisone, I have maintained my weight, and I am waling up a storm. The new medicine seems to be working. However, I got a blood and stool test, and my inflammation down there is still through the roof. I’m
fine with it, it’s not impacting me in any negative way, and it may be from balancing out from coming off of the Prednisone still. I’m a mess from that aspect.
I was supposed to have an appointment with the new GI doctor who had me do these tests to see my next moves. However, they cancelled my appointment and said that it’s too crazy and he can’t see me until April, lol. Many doctors left the network in my city and he had to fill in or something.
Therefore, I sent the tests back
to my Mayo Clinic GI Doctors instead, and we’ll see what they say after the New Year.
Going on 3 airplanes when we go back to Ecuador at the end of July, I feel is going to be like coming off of or taking medicine for me to where it will have a negative impact on my colon. I feel it’s going to be ugly, but I also feel that I will make it through ok, and after a few days of pain I should be fine. I just have to be careful with what I eat. For example, if I eat eggs at a motel or something,
you never know what they put in them.
I also think that maybe my “improved” diet that I shared with you guys is having a positive impact and helping me with how healthy I am today. I shared that I eliminated fish from my diet. When I did that, I also eliminated mayonnaise. I think this had a very positive impact on my health. I don’t think that fish is bad. I’m just an alien compared to others when it comes to food from being on a Raw Vegan Diet for over twenty years. I’m super sensitive,
and things impact me more than others.
For example, if you were to take a tablespoon of arsenic, it would kill you. However, if you were to take just one drop of arsenic, you should be fine. You could then slowly build up to a tablespoon of arsenic by slowly taking a little bit more as time passes. Then you can take a tablespoon without it killing you. However, if you built up to a tablespoon of Arsenic and stopped taking it for 20 years, the tablespoon of arsenic would then kill you
since it’s all out of your system now.
For over 20 years, I ate practically only water with the Raw Vegan diet. Therefore, denser foods are more difficult on me compared to the average person.
I just have to be very careful with what I eat. I don’t mess around anymore with cheat days or anything like that.
Regardless, of the inflammation in my colon, I feel that I am doing great. As long as I maintain my weight and I am able to walk long distances, I am happy and good. The
worst case scenario is that I now have a back up if I fall sick again, and that is Prednisone. I know it’s not good for me long term, but it’s better than death or not being able to function at all. It’s so cool that I need very little, probably because I am so sensitive.
One of the main reasons I fight endlessly for my health, is for my children. I don’t want them to suffer if I lose my mind or end up in a wheel chair. I think my brain will be ok, because of all the vegetable juice
nourishment I give myself all of the time regardless, even when I am malnourished with malabsorption. At this moment, the malabsorption is cured with these new meds. As long as that’s handled, I don’t worry much about the inflammation. I almost feel like that inflammation may also be incurable with this autoimmune disease that I have. However, we’ll see what the doctors say. They may up my dosage of my new biologic due to it, or they might just say to wait longer for the new med to kick in more,
because it can take time. It may just be how harsh coming off prednisone was. Time will tell.
Lastly, I’m in the midst of doing a set of 3 iron infusions. The first one was rough, but I recovered in a couple of days. The second one threw me for a loop, and I am scared to death to take the third iron infusion. On this second iron infusion, I was talking to the nurse, and it somehow came up that there is sucrose in the infusion. That’s literally white table sugar. I need the iron, so I was
just like whatever. I just want to get myself set up with my health for Ecuador as much as possible, because we are going at the end of January.
When I got home, I looked up how much of the infusion was sugar. It was 30%! That’s a minimum of one gram of sugar. That night after taking the infusion, I got an excruciating headache and I couldn’t function. This happens whenever I take too much sugar, which is always usually by accident, lol. The headache didn’t happen on the first infusion.
Maybe I just know now that it has sugar and my body produced that effect, or maybe because my diet has improved for so long that I am now too sensitive for it? I don’t know, but I had to take Tylenol or I would have been up all night in excruciating pain. I then had to take the Tylenol the next afternoon and night. We’ll see what happens tonight, but I prefer not to take Tylenol. It’s been a long time since I’ve needed it.
So Tuesday, I have my last Iron Infusion and I’m scared, lol. I’ll
see how I feel and determine if I’ll do the third one or not.
That was fun!
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Thanks everyone for your support!
Sincerely,
Matt |
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