This is going to be a long one and it’s going to be alot of word vomit. Honestly I’m not sure how to write this and express how I feel. I’ve never truly said my deep thoughts to anyone, not Maureen, not Cheryl, not my therapist, no one. I have a hard time expressing my feelings verbally and tend to just stuff them down inside. Anyways, here I go…
I guess I should start by explaining how it started. I have been feeling pain in my hands, wrist, feet and ankles for awhile. One day the pain was so bad I couldn’t squeeze the cleaning bottle at work. I was literally crying. That was the day I knew that I needed to see a Dr. This wasn’t just pain from my workouts. Something was really wrong with me.
I go to the PCP, she gives me meds and wants to see if it helps. I go back a few times and she finally does bloodwork. Next thing I know, I’m being told to call a rheumatologist and that’s when it all changed…
If you know anything about trying to see a Rheumatologist sometimes it takes months to get an appointment. I am in the process of waiting to see my 2nd opinion and I made that appointment in June, I’m not seeing her til December. Hopefully that gives you an idea what it’s like. I however got lucky and was able to get an appointment within 2 weeks with the original doctor.
So the process starts, they send you for blood work and all that good stuff. I was scared because I can’t be sick. I’m the one who takes care of everyone and everything at home. I’m the one who gets the boys to point A and B. I’m the one who they count on the be at every event to cheer them on. I’m the one who plans and takes them on adventures. If I’m sick, what is going to happen to our life.
Well our life, my life, changed because I was diagnosed with LUPUS SLE. Lupus can not be cured. Lupus is this evil chronic illness that causes my body to basically attack itself. And every ache and pain I’ve been feeling and pushing off, well, it now all makes sense. My body hates me and that’s that.
I basically lost it but didn’t let anyone see. I wasn’t sure what to do because I still have to work, be mom and do all the things. I was told to slow down. But how the heck do you do that when you work full time and raise 3 very active boys. I was FRUSTRATED and ANGRY! I DONT HAVE TIME TO BE BROKEN! And I’m going to tell the truth and he might not like that I’m writing this, but my husband isn’t the most supportive person in the world. He doesn’t understand nor care and I feel alone.
So I started on meds and my body started to change. I gained weight even though eating wasn’t on my to do list and I was still working out often. My hair started to fall out but the worse thing of all my anxiety and depression came back with a vengeance. Sleep wasn’t happening at night and during the day all I wanted to do was hide under the covers and cry.
Other things started happening, like reactions to the sun. Getting dizzy and nauseous out of no where. Lupus is so strange and sometimes their is no rhyme or reason for why!
How can I be like this? I still have to work and be mom! It’s been 2 years now and I’m still trying to figure out how to live with Lupus and be everything to everyone. We are still trying to figure out which medications will help me. Nothing is really working and I’ve been in a flare more often then not. I mean the Dr called me a mystery! Which is why I’m getting a second opinion.
I have more good days then bad at the moment thanks to Maureen helping me find supplements that are helping me. I’m hoping they will keep helping forever but who knows. All I do know is I’m trying my best to live this life, to not drown in the pain and depression. If it wasn’t for my 3 boys I don’t know where I would be, if I would be alive if I’m honest.
Dealing with this has changed me and not in a good way. But I’m trying very very hard to dig myself out of this dark hole. Each day, week, month, gets a tiny bit better!
Anyways I’m going to stop rambling now that I made myself cry again! Until next time! Xoxo Sharon
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