Ok, so I usually always try to focus on the positives when it comes to my health and although having lupus is incredibly challenging physically and emotionally, I have to count my blessings because I know that someone always has it worse. I was going to "vent" a bit tonight; you know- how I (and Im sure most of you too) feel as though we have nothing left and really have to dig deep to find strength some days. I had a pretty emotional week, after countless hours spent at the doctors- it turns out Im having some adverse side effects to the medications which aren't reversible. So now what- I laughed as the doctor explained that the medications I’m taking to "help" me have also hurt me. I had a few hours of self pity and allowed myself to cry over it, which I haven’t done since my rheumatologist first told me I had systemic lupus. I had to dig really deep this week for strength and positivity. Even as I write this blog, I feel selfish in a way for complaining because I have SO many wonderful, beautiful things in life to focus on.
I am finding so many positive aspects about blogging, one being that even if no one reads what I write, I feel so much relief talking about my struggles (and growth) dealing with lupus and life. This is something that I don’t do in my personal life; I don’t want to “burden” my family, friends, or husband. Instead, I hold in everything I feel and lately I am being suffocated by this disease- I just want to scream at the top of my lungs “I’m in pain and I feel horrible- and putting a smile on and acting like I’m as normal as you is HARD!” With that being said, I want to thank you for listening, and posting, even if I may seem like a downer (which I try to avoid at all costs at home and school). Thanks guys- I appreciate you and feel so comfortable being honest and spilling my guts:) and I know I will grow stronger as a person with each new battle I have to face.
Hi Stephanie,
ReplyDeleteI am sorry that the very medicine you thought would help you, has hurt you. I thought something might be going on because we hadn't heard from you lately. Don't worry about venting - you need to get rid of some of the stress. And we're here to listen and support you. No one will judge you here. I it's wonderful that you do all you do.
Do you want feedback on the writing? I think it's clear and concise. My one unanswered question would be what have been the side effects exactly? Do you have any other options? Are other medicines available?
Do you know which piece you are going to pick for your final project? I'm getting nervous about all of that. Pat said to add details to mine but I have no idea what they should be.
You aren't alone, everyone feels overwhelemd at times, and it's perfectly acceptable to vent.
ReplyDeleteI think your writing is clear and well organized. I hope the doctor's figure out the appropriate meds so you can feel better (instead of lousy).
Thanks for your support on my writing- I have not yet chosen a piece to edit and revise for week 8. I’m still a little unsure about what to do.
ReplyDeleteMary Beth, to answer your questions- the side effects of the medications are severe, but rare. It can actually cause serious visual impairments including blindness. The eye doctor and the surgeon discovered that there was already damage done to my eyes that is irreversible. There aren’t many options for lupus patients in terms of medications. I have already spoken to my rheumatologist about other options because of the fact that I have been so ill it’s been hard to do day to day work and now Im also very concerned about losing my eye sight. My health has been a major stressor over the last few weeks and for this reason I have been a bit MIA. I feel so bad about that