Tuesday, May 21, 2019

An update

For the past week or so, I have been feeling slightly better....which means I still have pain and fatigue and in general feel very unwell, BUT, I am not in as much pain and I am not as fatigued as I was for a while there.  I am not sure if it is because the medication I was put on is starting to work or if I am simply in-between flare ups right now.  Either way, I am trying to not take it for granted.  Yesterday, I was able to accomplish a lot (for me).  I made a trip to the dollar store for some things we needed (we really needed a toilet scrubber, okay!) cleaned the bathroom which has been atrocious lately due to my lack of ability to clean consistently, and managed to finally finish the mountain of dishes in the sink!  I even decorated my wreath with some fake flowers from the dollar store! Every time I look at it, it makes me smile. Of course, after all of that, I was quite exhausted.  However, normally after such tasks, my hands and feet would be extremely inflamed, swollen, and painful.  Last night, this was not the case, for which I was quite thankful.  As my upcoming appointment with my rheumatologist  approaches, I am fearful of what may come but I am trying to remind myself that worrying over worst case scenarios does nothing but rob me of joy, happiness, and peace.  Still, I am anxious over how the appointment will go and what the outcome of it will be.  I have a few concerns to bring up at the appointment and after so many years of not being listened to by doctors, I am somewhat fearful as to whether this doctor will listen and address my concerns or not.  A million 'what if's' play through my mind and I have to remember to shut them up and not let them gain foothold in my thoughts (which I am not always the best at...but I am trying).   

I am slowly (very slowly) trying to find joy and happiness in the little things in life.  There is such an immense peace in letting go of your stress and anxiety and all the concerns that are swirling around in your mind and simply being.  Even ten minutes in the fresh air, admiring my roses and plants can lift my spirits and calm my soul quite a bit.  I am slowly trying to implement things into my life that will promote healing in my body and soul.  Of course, this is also difficult and stressful due to our current financial situation, but I know my God will provide and my sweet husband and I will persevere.  Right now, my focus is on the little things that I can control, such as what I eat and what I think.  Food has always been one of my vices.  I eat when I am sad, I eat when I am happy, I eat when I am angry.  Training myself to have self-control when it comes to food and to keep myself from eating things I know will bring the opposite of healing to my body is hard for me.  Extremely hard.  If I'm being honest, I am quite addicted to sugar and am well known among friends for my sugar intake, so it is going to be a struggle to cut back on sugar.  I also am struggling with not eating gluten.  During some of our financial issues this year, I have gone back to eating gluten for convenience and due to money (okay, and I also just really love McChickens, and Whoppers...I admit it).  I know that I need to go back to not consuming gluten so that is another aspect of my life that I am trying to tackle and get under control.  There are many things about my health that I cannot control but I can control what I eat so I am striving to make good decisions with that.

This post really doesn't have anything of value or knowledge.  I simply am sharing where I am at right now in this journey with my health and with life in general.  Life is hard but I am hopeful that better days are approaching.           


Why I speak out on the rights of disabled people

I speak out and talk about disability rights and chronic illnesses and disabilities quite frequently these days.  I know many have noticed.  I know some may wonder why now?  Did my diagnosis of RA really spur me into this fanatic who speaks out on disability rights and who constantly speaks up about the hardships that chronic illnesses and disabilities have on people?  The answer is yes...and no.  My diagnosis gave me the courage to speak up but these issues have been on my heart for a long time.  These words are words that I have swallowed back time and time before, never having the courage to speak up.  My diagnosis simply gave me the courage I lacked; my diagnosis gave me 'proof' of an illness and disability that has wracked my body for years. For so long, I have felt as if I had no claim to the disabled community or the chronic illness community.  I had no diagnosis.  No doctor knew what was wrong with me and many gave up on me and pushed me to the side.  Despite the symptoms that often took over my body, I felt as if I had no 'proof' for those around me.  I felt as if those around me felt like I was making it up or exaggerating.  If doctors hadn't been able to discover anything wrong with me, then there must not be anything wrong with me.  Who would believe me if the 'professionals' couldn't even find something wrong with me?  So, I remained silent.   But, now, I have a diagnosis.  Now, I have the 'proof' of my illness - the expertise of a doctor to back me up and to say that I do, indeed, have a chronic illness.  I have dealt with this illness for years.  The diagnosis does not change that.  It simply brings affirmation to my years of sickness...years where I remained silent.  So now, I am no longer silent.  I speak the words that have been caught in my throat for so long.  I speak up for the rights of a community that is so often ostracized, neglected, and cast aside, a community that is often deemed by society as unworthy of rights. 

There is a proposal coming together right now that pushes to use social media (such as Facebook and Instagram) as a means of identifying if those on disability are 'truly' disabled.  This is not okay.  It may sound okay; If people are abusing the system and collecting disability money when not disabled, they should be found out and punished.  Of course this makes sense.  The problem, however, is that people with disabilities and chronic illnesses are not always bedridden.  We enjoy life when we can.  We go out with friends when we can.  We are allowed to have fun times just like any able bodies person. A picture on social media of a disabled person out enjoying a day at the lake with friends does not mean they are not disabled.  There are not many people who post pictures on social media when they are struggling with their disabilities.  I don't post the pictures of me in bed, ice packs, heating pads, and pillows surrounding me as I deal with a flare up of my illness.  I post pictures of me when I look good and when I look happy...as do most people.  It is already a difficult feat to get on disability.  I know this. Anyone with a disability or chronic illness knows this.  To add to this difficulty the need to constantly watch what we post on social media in case the social security administration decides that we post too many happy and 'healthy' looking pictures is unacceptable.  For many with disabilities and chronic illnesses, the money they receive from disability is how they survive.  Without it, they would not be able to afford food, housing, sometimes even medications.  Without it, they would die.  I am all for making sure that there is not fraud when it comes to receiving SSDI.   However, there are already extensive measures in place to avoid this fraud.  In fact, fewer than 4 out of 10 applicants are awarded disability benefits.  Investigating someones social media posts and pictures in order to 'prove' they are not disabled is violating and insufficient evidence to deprive someone of their income (usually their only income) that keeps them alive, keeps them surviving, keeps them from homelessness and death.

This is only one example of society's absolute disregard for the lives of disabled peoples.  I urge and encourage you to be aware and to do your part to support the rights of disabled people.  We are human beings and we ask to be treated as such.