For the ones I love, please read…

On another note:

Today I am feeling like I may not ever make a difference with getting awareness out there. I’m feeling hopeless in this whole situation. Im not the kind that has ever given up easy, but lately, specifically yesterday and today, I feel like I am literally fighting a never ending battle. I’m sick of this damn CVID, I’m sick of people not giving one crap, I’m sick of the politics, I’m sick of being sick, and not getting answers.

Im making this as brief as possible, because I am beyond exhausted, still sick, etc.,

I have had abnormal visual problems, I have been seeing black spots in my vision at all times while outdoors, cloudy or not. It’s beyond annoying. I went to the opthomologist 2 months ago, his response, ” never heard of such a thing from any other patient ” yeah, go figure. He referred me to an opthaneurologist. After five hours, a ton of tests, and three specialists consulting, their final diagnosis, was “we don’t know”. Again, Go figure. This is why I am so sick and tired of the medical field. There professional solution, live with these spots drifting through my vision every day for the rest of my life and they are not floaters. And I am supposed to deal with this because, as usual, there are no answers.

Today, I went to our local CVID get connected meeting. I’m usually energized and feel so much better after our meetings, not today. As much as I want to raise awareness, it just doesn’t seem possible. The limits placed on us, the financial strain, the medical issues, and so forth are becoming insurmountable. There isn’t an agency, nothing, nor anyone, that can, will, or wants to help.

I watched two of my fellow cvid ers cry over their personal battles with insurance.  Insurance  hoops are a huge hurdle for us with CVID. They would rather us die, than receive treatment. I just feel like I may be at the end of my interest in these meetings.

I hear a lot of talk about folks wanting to raise awareness, but I’m also hearing a lot of excuses as to why we can’t. I’m also realizing that the powers that be, may have some of the volunteers hands tied. These “powers” that be is the only organization that can help. I think I’m beginning to see the politics involved even more, even with this admired organization.  It’s a money game for them, period. I first realized the extent of the political power at the National Convention.

Ive been sick, throwing up for two weeks, and have lost a lot of weight. I have no energy, my housekeeping and what some think is simple like preparing a meal, I haven’t been able to do, which in turn raises my anxiety….and my husband really is of no use and gets angry because of my limits.

im sick of being sick, I’m sick of not being heard, I’m sick of fighting, I’m sick of people ignoring me, just feels like a complete losing battle. I can’t be the cheer leader for change by myself.

Sorry so Grimm, but this is just the truth.  It’s all taking its toll. Honesty, it’s a realistic day of someone that suffers from an invisible illness, and it’s just one day in the life of someone that has a freaking rare disease.

What do you think?

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