CieAngel's Haven: The long road of having RA/Lupus...

Having Ra/Lupus for the last 20 plus years has been an experience in how much your body can fuck up😕. I went for surgery and 3 weeks later was a whole different person. One who couldn't walk anywhere without my feet turning colors and swelling. Who couldn't bend, hold things sometimes breathe right. Weeks and days where I couldn't get out of bed. Being told I had to stay away from people in case they may be sick because my immune system wouldn't stop after getting rid of a cold.
Having a tooth crack and going to the dentist and being told there is nothing in your teeth they all have to come out, not fun... Dealing with 2 months of them coming out because the can't do surgery because you have RA/lupus. Looking in the mirror and knowing what old you is going to like because she is now staring you in the face at 35, and you look like 60. Not being able to wear dentures because the RA is in your jaw. Dentures hurt because your jaw changes with each flare. Some days you can't even eat because of the pain.

Realizing your dreams of the future, your plans all took a nosedive because your to sick to do them.

Finding out that the meds they have you on for 10 plus years was cancer meds and you lost 5 years because of having no memory of them. Coming off the meds fog and realizing you don't know who your husband is and your kids have aged 4 years and you moved to a different place. Finding out you are only supposed to be on those med a year not 10 Plus. Finding out that the meds that are supposed to help you ruined your kidneys. So you have a choice or being in pain or dying of kidney problems.

Plus in between all this you still have flares, your skin hurts so bad you want to peal it off. You feel like you have glass in all your joints, you can't go out in the sun because it hurts you, but you need fresh air. You learn to do thing when it is overcast or at night. You learn what you can and can't do anymore and some stuff you have no choice but to do but you pay for it in pain and feeling sick. Being in the ra brain fog and losing time.

I have always heard the "oh you don't look sick or your to young to have this from everyone but 2 doctors who I was very lucky to find. I'm very lucky also that I had an amazing support system from my Husband, kids and in-laws. I was also lucky to be in remission for the past 7 years and right now I'm fighting to keep it in remission but slowly losing the fight. My first doctor told me I would be in a wheelchair in 5 years, that was over 20 years ago and I'm still not. I will do what I have to everyday to stay that way.
I'm not looking for sympathy, I'm hoping by writing this that it will help more people aware of RA/Lupus and other illness where you "Don't look sick"
Also writing this because I'm working on getting myself at a better place and this is some of the things I have to let go of. Because while you are living in this you really don't have time emotionally to deal with any of it to be able to cope day to day. So I'm dealing excepting me for who I am, how I look and trying to love the me that I am... Ra/lupus and all.