Sick Forever: A Rheumatology Update

01058407-92f6-4682-941b-51ee4ebb6cd8I went to my rheumatology appointment yesterday, and I left the visit feeling very overwhelmed and rather upset, too.  Dr. Courtney went over all of my recent tests, labs, symptoms and quality of life since my last visit 6 months ago.  She became quite concerned while we were going over my symptoms and how bothersome they are becoming.  It was decided that we need to add an additional immune suppressant drug to combat some of my Scleroderma issues.  The drug that she wants me to try is called Methotrexate, and it is a low-grade chemotherapy drug.  That scared me, and that is the one fact that my doctor left out when we discussed it in the office.  That made me a little uneasy, but given the stigma with cancer treatments, I’m not really surprised that she left that little tidbit out.

da833d53-ceea-4744-99da-70bb9da97370Hearing that my Scleroderma is progressing to the point that it’s worrying my doctor really affected me in a way that I was not prepared for.  I hadn’t realized that I was this sick until yesterday’s appointment.  I guess I should have realized how bad it was getting considering how much I’ve been hurting and struggling lately, but I haven’t put much thought into it.  I’ve been so busy doing everything for everyone around me that I haven’t given myself the time to assess my own needs.  That’s how it goes when you’re a mother.  The kids always come first, even if you’re sick forever.  I don’t allow my illnesses to be an excuse to not be present in my children’s lives, but at this point it’s already interfering with them.  I have no idea what to do and I’m driving myself crazy trying to figure everything out all at once.  I need a second to breathe but everything and everybody is coming at me so fast I can’t even catch my breath, let alone deal with the mountain of obligations calling my name.

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In addition to the stress from my appointment yesterday, I received notification from my health insurance that I should be receiving home health care.  There are several tasks that I struggle with on my own, but Michael has been helping me for a long time now and he seems to be handling it just fine.  I’m not sure if I’m comfortable with strangers coming in to help me yet, but it definitely made me look at my situation from a different perspective.  This is the problem with invisible illnesses.  We often convince ourselves that we’re not that sick and that doesn’t do anybody any justice.  So for now, I’ll be declining their offer.  I’m just not ready for that leg of my autoimmune journey.

0a326cd8-6553-4930-9a4f-4a3eab3090d2Amidst this very upsetting revelation that I am, indeed, sick forever, I found myself reaching out for my mother.  I know, crazy idea since I’m grown, right?  Still, in life’s most difficult moments, it’s always my mother that I want.  I wasn’t raised by my father and my mother was all I ever had, so naturally that’s who I reach for.  Well, the conversation was too upsetting for her so I was left with my own crazy thoughts for far too long.  I question my own worth every time I’m brushed off by my mother and even though she reads every single blog, she still has no clue how much she hurts me.  Sorry to say it here, but it’s the only outlet that I have when I’m constantly being pushed away.

bff546ab-d29b-4728-be54-ef9d723f4abaThe emotions of my day went into overdrive last night and I spent hours upon hours crying in Michael’s arms about all of this.  Everything.  Every single little detail that has been bothering me lately came out in the form of an emotional waterfall.  I lost all composure and didn’t even care who saw me like that.  It was scary.  It was ugly.  It was necessary and today I feel so much better for letting it all out.  The whole scenario made me realize, once again, that it is Michael and I against the world and I can’t rely on anybody in this world, except him, to be there for me.  In my darkest moments, he has always been by my side and with him, I know that it will always be this way.

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