Welcome Back- Tales from the Dark

welcome-back-kotter-10

I am baaaack. Where have I been? No where spectacular and not in rehab. I am going to be honest and spill some raw truth– I was in a psychologically-dark place. A place where I looked forward to my next pill-induced coma so that I can be numb to EVERYTHING.

From November to December, I have been feeling the what I can only describe as the “lupus funk“, and as time went on, the funk got funkier. I was depressed. Overall, I just felt shitty with myself and my situation.  Every since I was diagnosed with lupus, it has been a battle- not only was my health failing but it had affected every aspect of my life. Because of lupus: 1) I had to move-in with my parents, 2) every move I make has to be supervised, 3) I am in bed by 7pm only to wake up in the middle of the night with pain, 4) I am always exhausted, 5) I can no longer drive, 6) all my money goes to medical bills, and 7) I am socially dead to the world, and etc. etc. etc. And to top it off, I still had to try to keep myself out of a hospital. I am sorry to have to admit this, fans, but I wanted to give up. I was tired of fighting and tired of smiling with hope so that others around can be assured that “everything will be OK”.

And that is why I have been absent for a good chunk of time. The reason I started this blog was to provide support and encouragement to my fellow warriors. I was certainly NOT in the state of mind for dishing out sunshine and rainbows (I couldn’t even queen out properly!), and therefore, refrained from writing. If I had written during my months of depression, it would have looked very similar to the chapters of a Judy Blume novel, a la Are You There God? It’s Me, Margaret. (*If you do not understand that reference, look it up, or you can trust I made a reference that was simultaneously brilliant and hilarious!*) My head was one hot-mess; not only was I blue, I was in a constant fog of confusion. I did the blog-community a service by sitting out for awhile.

So, why am I writing now? Easy- I feel psychologically more stable and do not have urges to swallow a cocktail of yummy drugs for reasons other than pain-control. I have been seeing a therapist on a weekly basis so that I can cry and have realizations. Plus, I hear fabulous people have therapists. 😉  (Diva approved)  I realized at the beginning of this year that:

1) I lost 2 months of precious time. We all know that lupus does not come with the gift of time. As lupus patients we are constantly told of the many “chances of this happening” or a “risk of that happening”. I was a baby who focused on the negative and spent all her time in bed feeling sorry for herself. Not the way to go.

2) I am still lucky– even with lupus. I have the best support system in my family, true friends, and my fellow lupus warriors. AND even after the crap year of 2012, I am still able to take a breath and stand on my own feet (with a little help from a member of my support system or cane).

The point-of-the-story is not to have pity-party in my honor because there are people who have it so much worse than I do. I am fortunate enough to be able to write this down. I write this awful truth in hopes that if you are in a “dark funky place”, you are not alone and have every reason to be depressed. Up to 60% of lupus patients will experience clinical depression, which is most likely the result of the continuous series of emotional and psychological stressors associated with living with a chronic disease. Helplessness and hopelessness are two common feelings associated with depression. Also, keep in mind that lupus flares can trigger depression. Just remember, that there are many resources out there to help you and that you are not alone.

Stay Fabulous!

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3 thoughts on “Welcome Back- Tales from the Dark

  1. My dear Diva… I feel your pain my friend… literally! I am so sorry (and no this is not pity it is empathy), for I know all too well the physical, mental and emotional pain you are enduring. I too, have been in a lupus funk/fog for months. But this is nothing new to me. I was diagnosed with lupus in 1985 and have had dozens of flare-ups over the years, however this last one (which started in January 2012), is kicking my ass a year later! I’ve been on steroids since March, 2012 and tried every flippin lupus treatment known to man (except Benlysta which I cannot start because I’ve lost 20+ lbs in the last 3 months and I am too weak and unstable to handle it) since then. NOTHING IS WORKING!!! And lets not add insult to injury, but in September 2012, I found out my husband of 23 years, and together for 26, has been having an affair for the last 2 1/2 years (maybe longer) and have reason to believe (after having done some serious investigating) that he’s probably been unfaithful during our entire 26 year relationship. Needless to say, I am devastated, and this type of “pschological stressor” is kicking my ass even more. Sometimes, I don’t even know how I get out of bed everyday. I think the only thing that keeps me going are my kids, Gianna 21 and Joey 18. There is a light at the end of the tunnel for us my friend, albeit dim and far away, but it is there. We just have to stay focused on that light. I will pray for you my friend. Stay strong and as you say “stay fabulous”!

    Mary Grisanzio-Capparelli

    • Thank you for sharing your story. I am sorry you have to go through this in addition to fighting a flare! I am glad that you have support from your children. They are lucky to have such a strong woman as a role model. You are absolutely fabulous!

  2. I’m so glad to see you that you’ve updated, and on my birthday too! I come here on days I need to connect to a Lupie when no one else understands the crazyness of this disease not even the doctors! No pressure, lol but really you do inspire! Thank you! *hugs*

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