Many thanks to all those that donated! This donation account is no longer active. Thanks to your support, my partner and I were able to pull together the needed funds to get the care I needed at the time, and relocate to a place where we could have some support from family and live in a climate that better suits my UV Sensitivity.
However, the struggles of being a disabled mechanic/artist who does not currently receive SSI/SSDI are still very real. Please, if you find any value from this blog, please consider making a donation to the PayPal link at the top right of the page. I don't create these posts expecting anything but to help/entertain others, but when I'm flared up it's hard if not impossible for me to get my hustle on, so your support is still greatly appreciated. No amount is too small!
I'm also working on adding Bitcoin here! :)
Hello my beloved readers!
I do hope you all had Happy Holidays and a Blessed New Year!
Typing is murder for me right now so this will be brief.
I've been dealing with a major flare up in my symptoms, which has resulted in increased cognitive dysfunction (my brain is like a leaky sieve right now, its terrible), and a new issue where the muscles and/or nerves in my shoulders and back are spasming/tightening up and it feels like I've been in knots for almost a couple weeks straight now. I haven't found anything that alleviates it for longer than a couple hours. I fear it may be "myofascial pain" and will be discussing it with my PCP when I see him next week. Apparently, its a common issue amongst those suffering from Lupus or Fibromyalgia.
In the meantime, I will be very limited in how much work I will be doing on the computer. I do have this talk-to-text software to play with (many thanks to my buddy Amir of The Wisest and The Stupidest Podcast for the awesome Christmas Present!!!), so I am hoping to get some work done on some eBooks that have been knocking about in my brain-fogged mind for some time. But I have a feeling I will be creating exclusively video blogs for a while. Which I guess isn't such a big deal as my video posts get more views than anything else...which I personally don't get because I read blogs to, well, read, and tend to avoid video blogs like the plague...but I guess I gotta catch up with the times, and creating videos is far easier than writing for me right now.
I do plan on finishing my Holistic Health Tips (That Actually Work!) Series, which we can all use after the gluttony of the holidays I'm sure. Even I slacked a bit on what I ate and drank, and am paying dearly for it now in this "flare-up". Argh. What I would give to be "normal" haha.
Okay my arm is starting to feel like its on fire. Time to tie this up.
I created a short video update for my Medical Fundraiser, if you would like further details about my current health situation.
Thank you all for your continued support, love, and interest in my work.
You help me to keep a positive attitude and always pushing myself forward, even if it hurts a bit.
*Love & Light*
Renata Carmen
Showing posts with label Lupus. Show all posts
Showing posts with label Lupus. Show all posts
Saturday, January 11, 2014
Monday, December 9, 2013
A Quick Note Concerning Relationships and Chronic Illness - How Changing Your Mindset Can Change Your World
I have been deep in the grip of a flare-up in inflammation, which has put my Health Tips for the Holidays Series on hold. I will be getting back into that shortly.
In the meantime, I wanted to post something to keep this blog alive and kicking, but I'm in a ton of pain and have the worst brain fog and fatigue so it makes writing very difficult.
Thus, this will be short, and probably full of silly technical errors. Please forgive any that do appear.
In the going on 3 years now that I have been chronically ill, I have done a ton of research related to the matter. Some of my favorite sources are forums, where one can read the experiences of other patients.
Not only do these stories provide unique and invaluable medical insights, and help me maneuver the complex health system more efficiently, they also validate my feelings. To know one is not alone when you feel desperately so is like giving water to someone wasting away in the desert. It could save a life.
That is probably the most tragic common theme amongst the chronically ill. The tendency for loneliness is powerful beyond description. Over the last few years, I have felt so lonely and scared I was afraid I would go mad with grief and despair. That is why I got my cat, who turned out to be badass because she is a Norwegian Forest Cat - which means she is smart and can climb down trees frontwards and likes water (and all kinds of other fun facts I won't bore you with now)! I strongly suggest a companion animal if you are homebound and/or disabled, especially one that is smart and will get tuned into your moods and needs. Freya kitty knows when I'm not feeling well and gives me snuggles when I need it, she also knows when I'm sleeping too much and will harass me til I get out of bed and play with her.
Anywhoos, enough babbling about my super awesome kitty friend.
Back to the serious stuff.
Its damn near impossible to understand someone who is sick unless you have been there yourself.
My research has shown that those suffering from the onset of "invisible diseases" like Lupus, MS, RA, Fibromyalgia, and other immune mediated illness, are grossly misunderstood. The odds are stacked against us; we have a 50% chance of having a doctor give up on us (I've had a few), an equally high chance of being misdiagnosed with a mental illness (I've had a doctor try to shove Zoloft down my throat, even after a Psychologist announced my symptoms were not psychosomatic), and we have a 75% chance of losing our partner/spouse in the time it will take to get diagnosed, which is an average of 7-10 long years.
These statistics blew my mind when I first came across them last year (Or maybe it was the year before? And of course I can't find my source now. Dang brain fog! I'll find it again and post it when I do).
But I can attest to the challenges that the onset of a debilitating illness can create in your personal life, especially with the one you love.
My boyfriend and I had just moved in together a few months before I started getting really sick. Within 6 months I was on an extended medical leave of absence from my blossoming career, which I wound up having to walk away from just a few months after that. As money and health problems continued to build up, we found ourselves being overwhelmed by the situation. Its like being caught in a rip tide and no matter what you do to get out you keep getting sucked back in. We were starting to argue. I was so stressed out about my deteriorating health I couldn't focus on anything else, any of the "real world" stuff. This left my boyfriend to carry the burden of acting as head of household, my caregiver, and my boyfriend. The stress started to create cracks and rifts in our relationship, and we were headed for destruction. We would have crashed and burned had we stayed that course.
But instead of becoming just another statistic, we were able to make our situation better.
To an outside observer, it would appear that nothing's changed.
We are still broke. I'm still sick. I'm still sensitive to all forms of UV light. I'm still unable to work. We still have a host of challenges to overcome.
So how have we come so far together, and learned to smile despite the pain?
When you find yourself in a situation you're unable to change, "don't wish it were easier, wish you were better." We delved into personal development and psychology and all kinds of studies. I will list specific titles and so forth that we have found especially helpful in a future post.
Change your mindset and you can change your universe.
Learn to be truly grateful and you will realize you already have everything you need.
During times of great struggle, love should bring you together, not push you apart.
Keep laughing, always!
I could keep spitting similar anecdotes, but I will finish this with a music video I recently saw for the first time. It does an absolute perfect job of illustrating what I'm trying to say, and after watching it I knew I wanted to include it in a post. The couple makes me think of my boyfriend and I; their situation is a beautiful metaphor for how changing our perspective has changed our world. Its so good, it makes me cry my eyes out.
I hope it touches you also.
What are some of your favorite methods for overcoming challenging situations?
*Love & Light*
-Renata Carmen
Please, if you find any value from this blog, please consider making a donation to the PayPal link at the top right of the page. I don't create these posts expecting anything but to help/entertain others, but I am a disabled mechanic/artist who is not currently receiving SSI/SSDI and when I'm flared up it's hard if not impossible for me to get my hustle on. I'm also working on adding Bitcoin here! :)
In the meantime, I wanted to post something to keep this blog alive and kicking, but I'm in a ton of pain and have the worst brain fog and fatigue so it makes writing very difficult.
Thus, this will be short, and probably full of silly technical errors. Please forgive any that do appear.
In the going on 3 years now that I have been chronically ill, I have done a ton of research related to the matter. Some of my favorite sources are forums, where one can read the experiences of other patients.
Not only do these stories provide unique and invaluable medical insights, and help me maneuver the complex health system more efficiently, they also validate my feelings. To know one is not alone when you feel desperately so is like giving water to someone wasting away in the desert. It could save a life.
That is probably the most tragic common theme amongst the chronically ill. The tendency for loneliness is powerful beyond description. Over the last few years, I have felt so lonely and scared I was afraid I would go mad with grief and despair. That is why I got my cat, who turned out to be badass because she is a Norwegian Forest Cat - which means she is smart and can climb down trees frontwards and likes water (and all kinds of other fun facts I won't bore you with now)! I strongly suggest a companion animal if you are homebound and/or disabled, especially one that is smart and will get tuned into your moods and needs. Freya kitty knows when I'm not feeling well and gives me snuggles when I need it, she also knows when I'm sleeping too much and will harass me til I get out of bed and play with her.
 |
| My gloriously fluffy Forest Cat (Skogkatt) and Companion "Freya" |
Anywhoos, enough babbling about my super awesome kitty friend.
Back to the serious stuff.
Its damn near impossible to understand someone who is sick unless you have been there yourself.
My research has shown that those suffering from the onset of "invisible diseases" like Lupus, MS, RA, Fibromyalgia, and other immune mediated illness, are grossly misunderstood. The odds are stacked against us; we have a 50% chance of having a doctor give up on us (I've had a few), an equally high chance of being misdiagnosed with a mental illness (I've had a doctor try to shove Zoloft down my throat, even after a Psychologist announced my symptoms were not psychosomatic), and we have a 75% chance of losing our partner/spouse in the time it will take to get diagnosed, which is an average of 7-10 long years.
These statistics blew my mind when I first came across them last year (Or maybe it was the year before? And of course I can't find my source now. Dang brain fog! I'll find it again and post it when I do).
But I can attest to the challenges that the onset of a debilitating illness can create in your personal life, especially with the one you love.
My boyfriend and I had just moved in together a few months before I started getting really sick. Within 6 months I was on an extended medical leave of absence from my blossoming career, which I wound up having to walk away from just a few months after that. As money and health problems continued to build up, we found ourselves being overwhelmed by the situation. Its like being caught in a rip tide and no matter what you do to get out you keep getting sucked back in. We were starting to argue. I was so stressed out about my deteriorating health I couldn't focus on anything else, any of the "real world" stuff. This left my boyfriend to carry the burden of acting as head of household, my caregiver, and my boyfriend. The stress started to create cracks and rifts in our relationship, and we were headed for destruction. We would have crashed and burned had we stayed that course.
But instead of becoming just another statistic, we were able to make our situation better.
To an outside observer, it would appear that nothing's changed.
We are still broke. I'm still sick. I'm still sensitive to all forms of UV light. I'm still unable to work. We still have a host of challenges to overcome.
So how have we come so far together, and learned to smile despite the pain?
When you find yourself in a situation you're unable to change, "don't wish it were easier, wish you were better." We delved into personal development and psychology and all kinds of studies. I will list specific titles and so forth that we have found especially helpful in a future post.
Change your mindset and you can change your universe.
Learn to be truly grateful and you will realize you already have everything you need.
During times of great struggle, love should bring you together, not push you apart.
Keep laughing, always!
I could keep spitting similar anecdotes, but I will finish this with a music video I recently saw for the first time. It does an absolute perfect job of illustrating what I'm trying to say, and after watching it I knew I wanted to include it in a post. The couple makes me think of my boyfriend and I; their situation is a beautiful metaphor for how changing our perspective has changed our world. Its so good, it makes me cry my eyes out.
I hope it touches you also.
What are some of your favorite methods for overcoming challenging situations?
*Love & Light*
-Renata Carmen
Please, if you find any value from this blog, please consider making a donation to the PayPal link at the top right of the page. I don't create these posts expecting anything but to help/entertain others, but I am a disabled mechanic/artist who is not currently receiving SSI/SSDI and when I'm flared up it's hard if not impossible for me to get my hustle on. I'm also working on adding Bitcoin here! :)
Tuesday, October 22, 2013
Catching up with the Times - First Vlog Post! "Organic Doesn't Mean GMO Free"
Greetings All!
Apologies for dropping off, again.
Since I last posted here, I have been working through a very comprehensive Elimination Diet.
I am putting together a write-up about my experiences and discoveries thus far, but I have been detoxing in the process (yes, detoxing from food!) and so have been extra "inflamed" as I call it. Lots of pain, brain fog, and debilitating fatigue. I keep telling myself its worth it, and it is, but its the most difficult challenge I've faced yet in my life, which is saying something considering I've seen some shit.
Since writing has been challenging for me due to my cognitive dysfunctions, and crappy ergonomic chair and desk set-up, I've been playing around with the idea of starting a podcast. I don't have the proper equipment just yet for that, so for the interim I plan to post rants on YouTube.
Here is my first one, inspired by some facts I picked up this morning while browsing the Interwebs.
I hope you find it informative, entertaining, and inspiring!
After watching it a few times I've started nit-picking it to death, but we all have to start somewhere, and I am excited to experiment with different forms of media.
Thank you so much for watching! I'm eager for constructive feedback.
What topics of research are important to you as a fellow "Chronic Badass"?
Please, if you find any value from this blog, please consider making a donation to the PayPal link at the top right of the page. I don't create these posts expecting anything but to help/entertain others, but I am a disabled mechanic/artist who is not currently receiving SSI/SSDI and when I'm flared up it's hard if not impossible for me to get my hustle on. I'm also working on adding Bitcoin here! :)
Apologies for dropping off, again.
Since I last posted here, I have been working through a very comprehensive Elimination Diet.
I am putting together a write-up about my experiences and discoveries thus far, but I have been detoxing in the process (yes, detoxing from food!) and so have been extra "inflamed" as I call it. Lots of pain, brain fog, and debilitating fatigue. I keep telling myself its worth it, and it is, but its the most difficult challenge I've faced yet in my life, which is saying something considering I've seen some shit.
Since writing has been challenging for me due to my cognitive dysfunctions, and crappy ergonomic chair and desk set-up, I've been playing around with the idea of starting a podcast. I don't have the proper equipment just yet for that, so for the interim I plan to post rants on YouTube.
Here is my first one, inspired by some facts I picked up this morning while browsing the Interwebs.
I hope you find it informative, entertaining, and inspiring!
After watching it a few times I've started nit-picking it to death, but we all have to start somewhere, and I am excited to experiment with different forms of media.
Thank you so much for watching! I'm eager for constructive feedback.
What topics of research are important to you as a fellow "Chronic Badass"?
Please, if you find any value from this blog, please consider making a donation to the PayPal link at the top right of the page. I don't create these posts expecting anything but to help/entertain others, but I am a disabled mechanic/artist who is not currently receiving SSI/SSDI and when I'm flared up it's hard if not impossible for me to get my hustle on. I'm also working on adding Bitcoin here! :)
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