Perspective

I was a reasonably successful musician, my band played with Faith No More and did well in national band battles and had a bit of a cult following way back in 1993.
Being an idiotic young man I admired Mike Patton’s eccentric crazy style in life and on stage and tried to emulate it, which unfortunately backfired and I ended up being hospitalized for psychosis and being a stubborn youth I lacked the insight to realize society demands a certain class of behavior.
I was in the mental health system for a reasonable period, but ended up beating them in court and have been free of it since.
The reason I mention this is that the rate of RA is significantly higher among people who have been treated with anti-psychotics.
My sister was also on anti-psychotics, literally 10 times the dose I was ever on and sadly she committed suicide 6 months ago.
I suppose I’m leading with this info just because hopefully a few people may find their situation isn’t quite as bad as they thought.
I developed RA about 8 years ago, it has been very aggressive and so far Rheumatology hasn’t been able to control it very well –
I’ve been on long term prednisone for years, about 10-15mgs daily and it has destroyed my appearance, skin infections, scaring, muscle wasting etc.
I always wear a beanie to hide as much of my forehead as possible as it looks quite shocking, white patches and deep scars.
Due to these factors I have basically become a hermit, making music when I can at home and obsessively working on my PC.
I was a fairly spiritual person but over the years have become quite cynical about most things, being alone with the TV and internet I think can paint a pretty bleak picture of the world, and facing red neck discrimination from strangers because you are a cripple and have had a mental illness coupled with spending years alone makes people seem quite crass and false.
Patience is something I spent a lot of time thinking about, it’s benefits and practice. I say practice because I have learned patience is a skill that takes practice, but if you understand it’s benefits to your emotions it is a powerful virtue.
Acceptance is the other and in my opinion the most powerful tool for dealing with problems like RA and grief in life.
I realized that nearly all of my emotional distress was caused by the ‘Why me?’ ‘It’s not fair’ ‘If only this & that happened’…
I came up with what I think is a clever answer to life’s problems.
Accept the present. (Present meaning now or in the sense of a gift)
I believe resistance causes stress, and this applies physically and emotionally.
So if you understand that wanting things to be different -past, present or future – makes you unhappy then you may understand what I am saying.
Accept the present and learn the power and practice of patience.
Then firstly, you will stop upsetting yourself wishing things were different and secondly when you’re having a bad time with your RA you can have the insight to remember you will laugh, be happy and have good days again.
I also think it’s important to remember when you are happy to remember things will get worse, so that when they do it’s not so crushing and unexpected, just as people say, “Don’t worry, things will get better” the opposite is also helpful.
Patience and acceptance are real things you can practice which help you deal with the hard times that come with RA, and honestly, understanding this saved my life.
Of all the galaxies, stars asteroids, space dust in the universe, of all the matter you ‘randomly’ could have been, your human, the big bang exploded into billions of galaxies 15 billion years ago and just happened to explode you into being human – Now.
15 billion years with an infinite future and you just happen to be alive now in the present.
Hardcore atheists will say if you roll a million sixes in a row on a dice it’s just as likely as any other outcome, and it is, but in the REAL WORLD if you rolled a million sixes in a row and said ‘That was just as likely as any other set of rolls’ and didn’t consider the dice was loaded or something was influencing the outcome you would be an insane idiot.
I say this as dealing with death is a big part of disease and a lot of intellectuals, studied in philosophy are experts in the art of the argument, and it can be quite unfair when an atheist breaks the faith of someone who doesn’t have much of an education because of their debating skills rather than the facts.
Any competent philosopher will tell you you can’t be sure of anything, so in my opinion there is always hope.
RA sucks but how you deal with it is everything.
Hope this helps someone at least.
(BTW – My profile star design has 7 points and 8 corners in the middle representing atomic number 78 – Platinum – It’s not a 5 pointed star and has nothing to do with witchcraft or Satanism)

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (6)
  • Erin Rush moderator
    2 years ago

    Hi Tika and thank you so much for sharing your perspective and a part of your story with us. As a person of a certain age, I have to say I am quite impressed that your band played with Faith No More. Goodness, no wonder you had some struggles, though. I think the hard rock bands of the 90’s weren’t known for practicing moderation!

    You brought up a lot of great points about life with RA and mental illness. I am so glad you took the time to really share your own evolution as an individual, in both a spiritual and physical sense. I thought, in light of what you shared, that you might find this article on positivity relatable — https://rheumatoidarthritis.net/living/attitude-is-everything/. I am sorry that you lost your sister to mental illness. I am glad we are living in a time that is at least starting to take steps to treat mental illness as the disease it really is. I know it’s far from perfect, as do you, but I am optimistic that the experiences of individuals like yourself and your sister will not be in vain. I hope you have good memories of her and a good support system to be there for you on the not-so-good days.

    Thank you again for sharing. May I say that it sounds like you have packed quite a lot of living into a relatively young life? I hope you are able to create a lot of music while you are staying home. I know many of our members can relate to not wanting to deal with people that don’t understand RA. I hope you have some good friends that can take you out once in awhile. As you well know, sometimes there is nothing like hearing some live music. Maybe you will find the time and energy to catch a performance in the near future.

    Wishing you a good day, Erin, RheumatoidArthritis.net Team Member.

  • Tika author
    2 years ago

    Thanks for the positive feedback, read “Attitude is everything”
    So true, don’t know if any of you guys have heard of “The Delayed Choice Quantum Eraser” experiments but to me they show that the old “Mind over matter” saying isn’t just a cliche.
    Thanks guys for giving me a place to share, cheers.

  • Eebtool
    2 years ago

    Tika,
    How ever we got here, be it some sort of holy design, a roll of the dice or just dumb luck, we are here now, and wherever we may be going could be just as awesome as how we started. As to what you have been through, glad you are still hanging on for the ride.

    My wife and I share a thought that is very much like what you have just posted and it goes like this.
    “So life handed you a bad deal, what did you learn from it and what are you going to do with this new information” Hopefully in the long run, we can look at our own RA and use what we have learned and it will help us to make the best of it.

    ROCK ON!

  • Tika author
    2 years ago

    For sure, whatever caused us to be here you have to make the most of it, too easy to dwell on the negative unnecessarily.
    I agree with your last paragraph too –
    RA has definitely taught me a lot of things I would not have learned if I never had it and I definitely find it easier to cope with things quite easily that most people would probably stress and fret over – It’s not all bad.
    Have a good one.

  • 2 years ago

    Welcome aboard!!

    It’s always interesting to hear about the struggles of others in relation to these ‘autoimmune’ diseases. It also fascinates me how much these diseases can affect ones psychological well being. When I began to realize how directly these diseases affect mental health and overall stability, it really floored me and made me look at people that have psychological issues way differently. I now believe that many (if not most) of these people are not just off or crazy, they are literally sick (in most cases in my opinion) and, like with RA and other serious disease, our healthcare system has failed them.

    Personally, I have found great success treating myself as if I have a bacterial infection, which is something that scientists suspected as a cause of arthritis early as 1935. I use cannabis oil (Full extract or RSO), as well as a myriad of supplements and my health has went from less than dismal to a more positive, lower level struggle. I feel way healthier than ever before, I look good and can exercise like normal now, but I still deal with minor symptoms as well as the emotional struggles that come with a disease that you have to constantly tend to.

    I respect the way that you are dealing with your struggle in a positive manner. And, you are right, perspective is everything!

    Thanks for sharing!

    Here are just a couple of links that show the relation between RA and systemic bacterial infections.

    These 2 are pub med links.

    https://www.ncbi.nlm.nih.gov/pubmed/10402069
    http://immed.org/illness/autoimmune_illness_research.html

    And here is a link to a center that specifically treats patients for these types of infections (not to promote, just to show that places like this exist). http://www.thearthritiscenter.com/content/home-page

  • Tika author
    2 years ago

    I’ve always felt with RA, reactive arthritis is more common in the initial stages than we think.
    I think there are so many things that cause an inflammatory reaction that the sheer number of causes is half the problem.
    Interesting at the bottom of the second article where it mentions ‘stealth infections’
    I have Sero-negative Rheumatoid Arthritis which means I don’t have the gene normally responsible for RA, and being a fairly logical sort of guy I assume there is a reason why my body is attacking my joints, and my white blood cell count is always high.
    I definitely agree with you I just think as in my case it’s like looking for a needle in a haystack –
    Is it something in my environment, diet or another hidden condition setting it off?
    Cool that you have it relatively under control, hopefully once I’m on TNF inhibitors in a few months things will improve for me too but I know what you’re saying –
    If they don’t know the cause all they can do is treat the symptoms which is not an ideal method, i.e. for me being on long term prednisone has caused all sorts of other problems.
    Thanks for the links.

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