Pemphigus Vulgaris: Part 4 Where I am now

If you haven’t read the first three parts, please read them first here: Part 1, Part 2, Part 3.

Pain isn't always visible!
Pain isn’t always visible!

I’ve now shared with you how it all began, and what pemphigus is. To wrap things up, I want to talk about present day, where I am now over six and a half years later. Most people would assume my darkest days were the beginning, where they could see my issues, they would be wrong. Even then I was full of hope, I kept thinking maybe tomorrow, maybe next week, maybe next month, as suddenly as the pemphigus had come it would leave. Over the years instead, the pain has persisted. Day after day, until I think I can’t take another day of pain, but somehow, I do.

Thanks to two chemotherapy treatments I received in 2013, I’m off of immunosuppressant’s in exchange for killing off my antibodies. The pemphigus however, is still on my scalp where people can’t see it, there are various hard plates on my head that can be painful. From the neck down, my body aches and stiffens filled with pain. My rheumatologist told me recently that she believes it’s myalgia along with the pemphigus, since I already have an autoimmune disease my body just kept on attacking itself and caused many other issues over the years. I can’t walk, or stand for long periods of time, before the pain goes from bad to excruciating. Even as I write this, I can feel the pain in my fingers and I’ve learned daily it’s only a matter of time before they begin to cramp up from writing. But still I write.

I would say my darkest days were not the beginning, but rather my darkest days were the past 8 months, between losing my last job and being more invisible than ever.

Let me tell you something about chronic pain and chronic illness, people forget. They will forget you have pain because “you don’t look sick” or just because it has been years since the first diagnosis. Not only will they forget, they will also disappear. And when they do reappear, they will make really stupid comments that will be hurtful and cut into your soul, even now the insensitivity of those people who I would assume should know better because they were “close” to me, pains me deeply.

If I could keep a job, I would love to be working right now.

I’m not sitting at home because I’m just living the dream, I’m really not. When I wake up in the mornings oftentimes I cry from the pain. The worst time is the mornings and at night when my entire body is full of pain and so stiff I can barely move. Both of my doctors have told me work is not a good idea right now, and for once I’m ready to listen.

I’ve pushed myself back to work twice while my body was in pain, and twice the repercussions of those actions emotionally and physically broke me down lower than I could bear. Still, I felt I wasn’t good enough because I’m 26 years old with two degrees but no career to speak of. I believed the lies that others whispered into my life that I need a job and a steady paycheck, that somehow if you’re not chasing the American Dream, no matter if you have illnesses that prevent you from doing so, that you are not good enough. That you are suddenly nothing but a burden.

And when you start to believe those lies, that’s when the darkness settles in and thoughts of suicide run rampant.

I refuse to hurt myself anymore just to prove myself to anyone, just to make some money. Where is all the money from before? I barely made any, I have nothing to show for those times except pain. NOTHING is worth the cost of your health. And by believing those lies and placing my identity in it, it led to a depression so deep and dark, that it took a total rebirth to be free of it. You can read about that here.

Please, remember us. Remember all of us who suffer from chronic pain and diseases. Think twice before you try to give advice, or be helpful. It’s not helping us to say we don’t look sick. It’s not helpful when friends and family don’t check up on us, it’s really not that hard to send a text or a message over social media and ask us how we’re doing. And when we talk, all you have to do is listen. You probably can’t solve our problems unless you have a miracle cure.

I wanted to wait until I was all better to write this. But I honestly don’t know when that will be, or if that will be. And that’s okay, I still believe for a miracle. Maybe not today, but maybe tomorrow, or next week, or next month. Maybe next year, one day the pain will be gone. It’s what I cling to, day after day of my suffering. I think often of the woman in the Bible who suffered with the issue of blood for 12 years.

 25 And a woman was there who had been subject to bleeding for twelve years. 26 She had suffered a great deal under the care of many doctors and had spent all she had, yet instead of getting better she grew worse. 27 When she heard about Jesus, she came up behind him in the crowd and touched his cloak, 28 because she thought, “If I just touch his clothes, I will be healed.” 29 Immediately her bleeding stopped and she felt in her body that she was freed from her suffering. – Mark 5:25-29 NIV

Her story resonates with me every time and I’m in awe of a faith, a desperation for a chance to be free of her suffering that led to her healing. It encourages me to hold on and have hope, in the darkest days when I’m in bed crying from the pain. When I wonder why so few people understand that they can’t see my pain, but I feel it. I’m a very positive person, because I have to fight the darkness and depression every single day. My positivity doesn’t mean that I’m okay, chances are, I could cry at the drop of a hat. But I allow myself to cry when I need to, it’s the only reason I’m able to smile so brightly.

Starting this blog has been one of the hardest and best things I’ve done, telling my story has brought so much support and yes, understanding. Rare disease and chronic pain are hard roads to walk alone, we need support more than we ever did before. So if you know someone who is suffering, reach out, be there for them. Don’t forget us.

I thank you all for reading this far along, for taking time out of your lives to look into mine. And I thank everyone who has supported me, for all of the true friends who have been forged through the fires and for all of the new friends I have met. Thank you. Keep on journeying along your path, no matter what life brings your way, if you know who you are, that is all that you need. You are a child of the king, and he loves you more than anything. Yes, suffering will happen in this world, but you can get through it, you can get through anything with him, because he’ll always be with you.

Stay encouraged, and be blessed.

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9 thoughts on “Pemphigus Vulgaris: Part 4 Where I am now

  1. I do think that myalgia is triggered by other things! I believe mine started with mono. I have SCEBVS now- which means the “mono” virus still exists in my system and it flares up now and then– usually when I’m run down or stressed out. That has led to my fibromyalgia and cfs. So much more needs to be studied about all these links to other issues. I found out a lot of people with fibromyalgia have the same food sensitivities (asparatame, msg, etc) that I do AND that many of them are also allergic to mosquito bites! The human body is full of mystery and I for one would love to see headway made in the many auto immune disorders.

    I so feel your pain with the “Get a job, you don’t look sick, etc.” Ugh. Thank you so much for bravely sharing your struggles. Sometimes just knowing you’re not alone helps. I am so thankful to know your “invisible pain” journey hasn’t stopped you from writing. Your so gifted. Keep writing through the pain, love!

    Liked by 2 people

    1. Yes I have had SO many things triggered not only from my autoimmune disease but medications as well, hypothyrodism, acid reflux, I had glaucoma for a while thank God that didn’t stay! And arthritis and such. I’m hoping with all the technology available today that they will start to see what a serious issue these things are and find some cures as we keep spreading awareness.
      And thank you, I’m glad I’m not the only one who goes through the “Get a job, you don’t look sick!” Sometimes I’m just at a loss for words. I’m glad you understand and it’s inspiring seeing all that you do in spite of it!

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  2. Rebecca–Surely for now your “job” is to rest! Maybe you’d be surprised to realize how your story affects other people. I’m glad you’ve taken the time to write it, and hope you will continue to take us on your journey. ❤

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  3. I was recently diagnoised with Benign Mucous Membrane Pemphigoid. I also have Celiac and Meniere’s disease. I can not imagine what you are going through. I completely understand about the comments though. If I looked like what I felt like people would be scared! I will pray for your health and mental well-being!

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    1. Yes they would be! I’ve contemplated making a T-Shirt or something so they can see it lol. Sorry to hear about your diagnosis, but I will be keeping you in my prayers as well! I’ll put you on my prayer board 🙂

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  4. Dear Rebecca,

    My name is Ashlee. I’m co-founder of the Youshare Project, with the mission to connect people around the world through true, personal stories. I recently stumbled across your blog and read several of your posts, including Pemphigus Vulgaris Parts 1-4. You write beautifully, and your story is incredibly compelling. I’d like to invite you to check out our website and ask if you would considering submitting a story. I think your story would make a wonderful youshare, because not only would it inspire others living with chronic illness, it would also shed light on what it’s like to live with Pemphigus Vulgaris and other similar illnesses for friends, family members, and co-workers of those affected.

    If this sounds interesting to you, I would love to email you directly with more information (including ideas on what to submit) and formally invite you to adapt your story to youshare and share it with the project. You have my email address and website. I hope to hear from you soon.

    Best,
    Ashlee
    http://www.youshareproject.com
    ashlee@youshareproject.com

    Like

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