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Welcome

Wow, do I have some nerve, well really it should be plural, as I have some nerves. But that really doesn’t sound right. This blog is about my journey through the maze of doctors, tests, procedures, and medications as they try to figure out what the hell is wrong with me. Basically, I have some yet undetermined neurological condition that goes back 15 years now.

Since I didn’t start this blog until 2019, I’m going to have to go back, way back into the archives of my brain to recall some of this older stuff, but it is really important to see everything as a whole. good thing that I kept notes throughout the years. Once I get all the history out of the way, then it will be a more traditional daily type blog, but for sure not every day.

If this is your first time here, start here and click next post at the bottom right to read the posts in order.

I would like to thank my wife and two children for helping through all this and being my support system. You guys really help me through the hard times and you have had to put up with a bunch of them over the past dozen or so years.

Notice: This is my blog, not your soapbox. I speak my mind and it is often unfiltered, if you get upset or offended, I could care less. You can simply surf off to the next web site. I’m offended that you are offended, so don’t even bother wasting your time to complain, it will fall on deaf ears.

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What a Year This Week Has Been

Enbrel Injections
What a year this week has been

So let me state this couldn’t be any more of a truer statement this week. I have had every intention of going onsite to work this week, but so far I have racked up telework hours. I’m sure it won’t be long until they tell me to come in or I will lose my job.
 
It seems like the Enbrel injections are working for the RA side of the house, but either the weather, the Enbrel or something else is causing a massive flare on the Fibromyalgia side of the house and then it looks like my Diverticulitis might jealous that the RA and the Fibro are getting all the attention. I can’t say for a fact that it is the Diverticulitis, it could be a side effect from the medications, just not sure yet. Everything I eat makes me super nauseated and upsets my stomach.
But it has been a very trying week. I’m just so thankful that I can currently telework, but I have to be on-site next week, no excuses.
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Men’s Health Month

Men’s Health Month

The purpose of Men’s Health Month is to heighten the awareness of preventable health problems and encourage early detection and treatment of disease among men and boys. This month gives health care providers, public policymakers, the media, and individuals an opportunity to encourage men and boys to seek regular medical advice and early treatment for disease and injury. The response has been overwhelming with thousands of awareness activities in the USA and around the globe.

Links
http://www.menshealthmonth.org/

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World MS Day

World MS Day unites individuals and organizations from around the world to raise awareness and move us closer to a world free of MS.
In 2009, the Multiple Sclerosis International Federation (MSIF) and its members initiated the first World MS Day. Together we have reached hundreds of thousands of people around the world, with a campaign focusing on a different theme each year.
MSIF provides a toolkit of free resources to help everyone to take part in World MS Day. Anyone can use these tools, or make their own, to create positive change in the lives of more than 2.3 million people around the world.
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Package From Enbrel

Enbrel Injections

Contents of the PackageI received a package from Enbrel today, it contained a nice set of instructions, FAQs and how-to’s and a nice little insulated travel pouch to put my injectors in. Thank you very much Enbrel

What I found missing were any instructions on how to use the pouch effectively and it would have been nice if they put a little reusable ice block with it. So my question is do I put ice inside the insulated bag or store the closed bag inside an ice chest? I think that the concept is to put the carrying pouch inside the white plastic bag and then put that in an ice chest.

I really appreciate their thinking on this, but it just seems to fall a little short, kind of like the sharps container and alcohol wipes.

The wipes really get me, I know they are cheap and I could easily pick them up myself (which I did), but Enbrel being a biologic, one would think that they would send you wipes and preach about using them in an effort to help keep infections at the injection site down.

 

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No Joke

Enbrel Injections

I’m so reluctant to post this, but maybe someone out there can use this. RA and Fibro are no joke. I never imagined myself as a 50yo and need help walking at times, some days (like today) barely being able to get out of bed (it’s 3p.m. and I’m on my third nap).The physical pain and mental anguish can at times be too much, which turns into depression. The self doubt from feeling so tired, so exhausted, so useless also turns into depression. This shit is no joke.

I was once a very active, physically fit US Marine and today I can’t get out of bed. This mornings strip to the farmers market has done me in.

I’m not looking for sympathy, that’s not me, but this blog is a way for me share with others.

I will keep fighting!!!!! If you are dealing with something like this, you CAN keep fighting too, you must!!!!

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Fibromyalgia Awareness Day

Fibromyalgia is an immobilizing, difficult to manage and not widely known disease which affects many men and women worldwide.

It’s a disease which is about seven times as likely to affect women than men, and although it usually is seen in people between the ages of 30 and 50 it can appear in sufferers of any age, whether elderly or child.

Fibromyalgia is a difficult disease to diagnose; there isn’t a specific set of testing which is able to find and diagnose it, and the symptoms that sufferers experience are often attributed to other diseases before fibromyalgia is presented as the culprit.

Fibromyalgia, which affects more than 12 million Americans, is a musculoskeletal syndrome that may cause some or all of the following: widespread pain, tender points, incapacitating fatigue, anxiety, depression, migraines/chronic headaches, irritable bowel syndrome, irritable bladder, insomnia, hypersensitivity to cold/hot, swelling, fibro fog (inability to concentrate/focus), difficulty remembering, numbness, stiffness, decreased energy, noise, light and odor sensitivity, and skin sensitivity.

Symptoms may come and go, lasting a few minutes, an hour, a day, a week, a month or a year.

Resources:
National Fibromyalgia Association
Fibromyalgia News Today
Fibro Center

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Fourth Injection Today

Enbrel Injections

Fourth injection today and either I’m having a major Fibro flare, I’m coming down with something or I did something wrong with the injection. I feel like hell today. So nauseated, dizzy and just general malaise.

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Back To Work

Back To Work Sign

I was fortunate enough to have some leave saved up and knowing that I might have a rough time with the Enbrel injections I was able to take some time off and work with my boss to telework some time so I can get accustomed to how I feel after the injections. I had read on some Facebook support groups for Enbrel that I might experience some troubles getting accustomed to the injections. I’m glad I took the time off from being on-site.

Today is my first day back at work and well, it went well. I wasn’t nauseated or dizzy, but I’m still wiped out at the end of my work day. My brain is all over the place and I can’t type for crap, but I’m moving forward. It seems that the pain is way down as is the stiffness. Too bad that I’m still taking all the meds, ugh I really want to get off the Hydroxychloroquine and cut back on the gaba (the weight gain is killer with that junk, but it certainly works for me).

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Feeling Rough

Enbrel Injections

I kind of feel like crap today, so I’m not sure if I felt this way the days after my injections or not, I wasn’t really paying attention. But today, my hands and feet hurt, I have no appetite, little energy and my right knee (the one that I had surgery on), keeps reminding me every five or so minutes that it is there and it isn’t happy about something. It keeps shooting this electrical shock through my knee and it is of course set to level 10 and shocking the hell out of me. This is the type of shock that when it happens, my whole body jumps from the jolt.

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May is Lyme Disease Awareness Month

May is Lyme Disease Awareness Month. Activists throughout the United States use it as an opportunity to organize walks, 5K runs, showings of the Lyme documentary Under Our Skin, and other events to help educate the public and/or raise funds for research. Some write letters to their local newspapers, share information via Facebook, Twitter, and Pinterest, or tell their story via a YouTube video. Some work with their city, county or state officials to obtain proclamations of Lyme Disease Awareness Month—which can result in media coverage.

Resources:

LymeDisease.org

Global Lyme Alliance

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