Roll With Me...

in #walkwithme6 years ago (edited)

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Hi folks! Today I will be posting a walk/roll with me blog. I won't be doing much walking at all unfortunately, my Progressive RA has jacked my feet up really bad so I will be utilizing a pimped out wheelchair as much as I possibly can. I have an appointment today at 0830 for a medical infusion for my Multiple Sclerosis so I'm going to let you guys tag along with me to the hospital so you can see what I see.

As I said before, my appointment was for 0830...here's a picture of my watch while in the waiting area.

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It's pretty boring so far and my nerves are already shot from dealing with incompetent people prior to even getting here. During the trip to the hospital I was trying to multitask by making phone calls for other things that needed to be done and it was a total disaster as well as a huge waste of time. Therefore when I arrived at the hospital, I was already in a bad mood...hence my pouting face above.

There's not much going on around the waiting area now. There's a Starbucks close by but I don't need anything out of there.

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There's several soda and snack machines nearby if you need to get your sugar on, again...nothing I need is in those machines either.

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Time check...

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Another pout face...

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Hmmm a hospital with a sanitation grade of 94, do yo think that's good?

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My co-pilot for the day...

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Ah what's this? An armed guard emptying out an ATM machine. Little does he know that there's a heavily armed Bandito right behind him on the ready to save his life if need be. Can you tell what kind of gun he's carrying? Spoiler alert...It's a Glock :)

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Yep, he caught me taking a snap of him...

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I wonder how much loot is in those 2 strong boxes? I'm afraid I can't answer that question like I could the gun question.

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My special bag that goes with me every time...

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YAY, WE GET TO GO TO MY ROOM!

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Long long corridor down to the elevators, I hate it for my co-pilot.

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When we get up to the 11th floor, we were originally assigned to be in a room with other patients receiving infusions.

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This is a very long process (about 8 hours) and I Iike to keep to myself during this time. I usually put in my earbuds and watch a movie, take a nap or something. Well, it never fails that I tend to attract unwanted attention much of the time and the last time that I was put in this room with everyone else, I ended up getting in to a heated debate with a very closed minded and ignorant person. This person wasn't a patient but was there with a patient waiting with them. They were making very negative comments about police officers as a whole. The nurse kept glancing over at me giving me a slight grin as if she was trying to let me know that it was okay and just ignore them. The nurse was fully aware of my career in law enforcement and could tell that I was getting aggravated. Even my wife was whispering to me to just calm down. But they just wouldn't shut up and I couldn't stand to listen to them spread ignorance around any longer so I assertively put the person in their place and corrected them on everything that they had said. I could tell that my nurse was about to have a nervous breakdown and that she was not used to confrontations in her workplace.

The next infusion that I had, I was placed in a room all by myself. I felt like I was being punished but rewarded at the same time lol. I felt like the bad boy in the group but actually came out smelling like a rose by scoring a private room with a bed. I talked with my nurse later and she knew that I was eventually going to say something and she thought that it would be best to keep us separated from now on. I just smiled and told her that I wasn't going to complain 😁
I think that where I had to put up with so much negativity from the public in my career that now I really don't give a shit and it doesn't take much for me to tell ya like it is. I try to stay civil and keep cool as much as I can and most of the time I will just remove myself from either a conversation or someones life before it gets to a boiling point. The block button can be a wonderful thing 😉

So with all that being said...here is my room for today. My normal nurse wasn't here today so I had to let them know that I'm supposed to be put in timeout lol.

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And this is my view...

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They went ahead and got an IV started but we have to wait for the medicine to arrive.

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And were still waiting...

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These new nurses don't know what the hell they're doing when it comes to these specialty infusions, I'm really missing my regular nurse. Blood pressure rising, gettin hot! Ordering the boss to turn down the AC in the room.

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Gonna try and take a nap guys before I pop a vessel. To be continued...

@bluelightbandit
Non Ducor, Duco

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Man, I hate hospitals and clinics, and I am a retired nurse specialist! Times have changed and so has the care you receive. The older I get, the less I like being kept waiting and unfortunately, I always get stuck with an ignoramus within 20 feet of me! It is a pandemic! I hope the rest of your visit goes better...

We are soo much alike lol.

Ahhhh man, sux you have to deal with this. Is this life long procedures or just for a little while? You got that guard pretty good. He has that look of "He knows that you know that he knows" you are on to him!

There's no known cure for either one of the diseases that I have so my choices are either to take treatments that the doctors recommend (which are extremely expensive and risky) or try natural health remedies like totally revamping my diet to try and heal my gut. Some people believe that a leaky gut is related to causing autoimmune diseases. And a leaky gut can be caused by eating a variety of foods.

So unless there will be a major breakthrough with these diseases, these treatments will be necessary. This makes the 3rd type of treatment that I've been on since 2013. The first treatment was self injected shots that were horrible to administer every other day. The side effects were flu like symptoms that lasted for 24 hours, so if you took a shot every other day, you pretty much felt like shit all the time. These shots cost around 5,000 bucks a month.

After giving up on that treatment I switched to a more aggressive and powerful medication called Tysabri. This medication had a good track record of keeping the disease at bay and also helped boost energy which is HUGE for MS patients. The downside to this one is that it in increased my chances to developing PML, a deadly and nasty disease that can either kill you or turn you in to a vegetable. https://en.m.wikipedia.org/wiki/Progressive_multifocal_leukoencephalopathy

Just as soon as the Tysabri started helping me feel better, my chances for PML were rising rapidly and it was recommended that I should come off of it or continue to take extreme chances that would only continue to increase in a short amount of time. This was also the same time when my Progressive RA kicked me in the ass really, really hard. This medication was administered once a month at the hospital and cost 10k just for the bag of fluids, not counting the hospital bills for their troubles.

After giving up Tysabri for obvious reasons, I'm on my current infusion that is supposed to work on both autoimmune diseases at the same time, unfortunately it doesn't work wonders for either one. It has been keeping any new scars from forming on my brain and spinal cord so far but I still feel like hell all the time. The drug doesn't do much at all for my Progressive RA either. I still have to take other drugs and steroids just to function daily and that's not good. This is pretty much my last option as far as medical treatments goes. Hopefully something new and better will come out soon or better yet, a cure.

I've tried changing my diet to a Paleo type lifestyle and that was really difficult. Not so much as me changing the way I eat but that also meant that my wife has to change also and thats where the problem evolved. She works very long hours and trying to prepare every meal just right became too much for her unfortunately. We started off strong but fell off the wagon. We're in the process of trying to change again. It's a very difficult thing to commit a 100% to, especially when one person works all the time and the other feels like hell and has no energy. It's just something that needs to be done. I need to try and find the energy to go do the grocery shopping myself and help with preparing all the meals. That would help her out, which would in turn help the entire situation out. But finding the energy and not being in too much pain for me to take on this responsibility is a pretty big tall order.

And yeah, the guard knew something was up lol.

Geez man, I can't even imagine what it must be like. I hope there is a medical break through that can help you out in the near future. The MJ must help a bit but it can only do so much.

Hang in there @bluelightbandit.
Big batch cooking is where it is at.... prepare food once, but enough for 3 meals ahead. You have to prep the food that will heal you (in advance) so that it’s just as convenient as the crap that’s lending to the disease processes (MS and RA).
I have to come and teach...soon.

We'll get there eventually...

Nice post. Enjoyed the read and how it was split up with the pics. Feel better and try not to let the walking dead manipulate your mood. The view rocked by the way! Enjoyed.

Thanks for taking the time to read and comment, I'm glad you enjoyed it!

Thanks for taking the
Time to read and comment, I'm
Glad you enjoyed it!

                 - bluelightbandit


I'm a bot. I detect haiku.

Please no vessel popping... I want to read the rest of this "adventure" tomorrow. Keep on!

I don't think I popped any but they probably weren't far from it. Horrible day...horrible day!

Lol......"Ordering the boss......"
I love it but I know that you put a "pretty please" in that,
😂🤣🤣🤣😅

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