So yesterday was #rarediseaseday and I pretty much missed the boat. To be honest I think I may have done it on purpose. For as much as I talk about having to self advocate for your health, I also am often worried that I’m allowing my disease (Cushing’s Disease) to become my identity. I don’t want my life to constantly revolve around my illness.

To be completely honest the last 4 months have been hard. I have been off work since my surgery in November. I’ve been living off of EI, which has run out and now I have to go back to work next week…and I am super scared. I am scared of letting people down, am I ready to go back? Am I going to push my self to much? Am I letting fear hold me back?

If someone were to have watched me for the last 4 months with out really knowing what has been happening they probably would think I am super lazy, unmotivated and boring…and they wouldn’t be wrong. I have spent most of my time watching reruns of The Big Bang Theory and Friends. In truth I found it very difficult to find the motivation and more importantly the energy to do much else. Even though this was my second surgery it was nothing like my first and a whole new experience. Unfortunately it was labeled as a failed surgery and I feel like the only thing I got out of this whole thing is a sinus infection that never goes away, bad neve headaches from where they screwed my head to the brace and more unanswered questions that leave me so frustrated that I just cry… all the time. I cry more than even my husband knows. Along with the physical pain, the emotional pain is almost worse…. I can’t just take a pill and hope it helps. I feel depressed and defenseless and defeated. I used to be so positive and believe that being positive was the key to recovery…and maybe it still is, but that was also easy to believe when I thought my first surgery was a success. This time around not so much.

This time around I have an amazing support team which almost in a way makes me feel worse. I feel guilty for being so… bleh and depressed and numb. I am surrounded by so much love its unbelievable. When they ask me how I am, I lie. I say I’m ok. I’m feeling good/better so that they don’t worry about me. I feel guilty that they care…I know it’s so stupid to think this way. I feel like if I tell the truth and tell them that I am not ok, I am letting them down, that I’m disappointing them. Or I feel like I’m being judged…you’ve been off work for 4 months, sitting on your ass and you still feel like shit? So this is why I chose not to make a big deal about Rare Disease Day. I feel guilty about talking about myself and my “problems”. I don’t want my friends and people to think…oh there she goes again or ya ok we get it you have a disease…blah blah.

Ok so there are a small group of people who do know exactly what I’m going through, people who I can open up to who I know will not judge me and I am so unbelievably thankful to have them in my life. So now that I have come clean about not being ok I will actually explain why. As I said I am in pain. I am experiencing very bad neuropathy from developing type 2 diabetes as a result of being insulin resistant. This means that my body over produces insulin and my body doesn’t know what to do with it. This results in nerve pain. Most people develop this pain after years of being diabetic, but of course I get it now. I get it in my hands, in patches on my legs and weird itchy patches on my back. Unbelievable itchy skin that nothing will help. I have bad back pain and even had to used a cane for the longest time. I get bad neck and shoulder pain. I get very bad headaches that I can pinpoint to the spots where my head my screwed into a cradle they use during surgery. They must have hit a nerve because I shouldn’t be having pain still 4 months after surgery. The surgeon said it should eventually go away…. right. The most frustrating physical issue I have as a result from the surgery is this constant sinus infection. My sinuses clog so badly they hurt, I can’t breathe and the mucus has to come out somehow so it’s either my nose or my mouth which means my throat is raw. I get scabs that build up on the inside of my nose… like huge crusty snot tubes…they eventually work themselves out and its pretty gross. I take photos of the really big ones…like 2″ long. I have an appointment to see an ENT but not till April. You can imagine my frustration.

I also get what I like to call flair ups. I guess maybe it’s a cortisol hight. My fat pad will burn, my body will bloat, my joints will hurt, my stretch marks will inflame, turn red or purple and it feels like a belt of pain around my waist. My feel will also swell. It’s super fun. All of this on top of my insomnia…its 3:10 am right now. My prime sleeping is from 4am to 12PM. Then I usually need a nap around 4… this is not a life. This is why I spend so much time on the couch. I do often try to get up and go out and when I first start I’m usually ok but I soon tire and need to rest. If I over do it, even just a little I am pretty much out for the count the next day. I am learning to put limits on my self. I still have a hard time concentrating on a single task and get very overwhelmed very quickly. I have attempted to clean my room…like really de- clutter because I am loosing it, like 4 times but I find the task so daunting and unattainable that I get a panic attack before I even start. I try just doing a little at a time but I get distracted by the bigger picture and lose it. I am so defeated by the fact I don’t have the energy to tackle basic every day tasks.

I have allowed myself to fall into old habits, bad habits. I have allowed my depression to get the better of me and use shopping as a way of grabbing into a fleeting moment of joy. Which was very easy to do since this has all taken place over Christmas and many birthdays. You see I love to shop for gifts for my family and friends. This unfortunately is at the cost of my maxed out credit cards. I have fallen into my debt pit of despair once again. I use shopping as a crutch. Yes I have a problem. That’s the first step to recovery right? Admitting I have a problem? I have also exchanged superficial “health care” for the kind that will actually matter. I believe that if I looked healthy on the outside maybe I’ll be better in the inside. I am constantly battling my self love issues. I have body dysmorphia. I always think the worst of myself, always have. And with having a “Cushing’s body” my self esteem is way worse. There is a seemingly unending war between myself and my body. I choose the words seemingly because I am trying to catch myself when I choose definitely negative words that can put me in dark places. Like I said seemingly instead of just never. Nm just something I’m trying to fix. Anyways. I feel like I am trapped. Trapped inside this body. I feel a huge disconnect between my inner monologue and what I am physically. It’s very frustrating. I have such desire to do so much more. From the little things like haveing the energy to clean my room, put laundry away, bake a cake, heck go to work. To the big things like open a bakery, travel, be an influencer (my guilty pleasure dream). I want to preform again, god I miss singing. And I want to be a mom, and there is a really big possibility that will never happen for me. I feel so held back because of what I can’t do. Which is ridiculous because I shouldn’t be sitting here feeling sorry for myself. There are sooo many people in this world who have way bigger limitations and they don’t let it stop them…so why a I? Just the thought of getting started is exhausting. Speaking of exhumation I am finally tired. Good night.