#riptotheoldme

As a woman who is viewed as being an “inspiration” and “strong” in my adversities, I feel like a total fraud. I’m not a saint, I’m not always positive and I have dark days and thoughts I battle with. The people who are close to me in my life know I struggle with very debilitating health problems that keep me bedridden for weeks, even months at a time. However, when a shower isn’t the most exhausting task of the day and I still have energy left to “tame my mane” and put on makeup, I aim to go out and paint that smile on my face to the point where I literally feel my face twitching so much from trying to keep up on the smile and clenching my jaw so hard in between to try to not have to break down in tears of pain and have to leave, retreating back to my bed, waving my white flag. My friends that I spend time have said before to each other that they wouldn’t know I was sick at all if I never mentioned it to them, or if they never saw me in a wheelchair or struggling to take steps with my walker.

I have Addisons Disease, (my endocrine system is unbalanced because both of my vital glands, the adrenal and pituitary are not producing the essential hormones to balance me out, causing a laundry list of side effects and constant adrenal crises leading to over two dozen plus hospitalizations), a pituitary tumor, Neuropathy, several GI issues, a biatch of a migraine that has not left me since I was 22 (I guess my migraine loves to hate me and can’t live without me–I’m now 28 years old), Fibromyalgia–chronic widespread pain that keeps me from being able to move most days, Chronic Fatigue Syndrome, Hormone Deficiencies, Metabolic Acidosis, Osteoporosis, and also suffered from Pancreatitis while the docs were treating me like a guinea pig, TMJ, several vitamin deficiencies, blood clots, DVT, and the inability to walk due to extreme chronic weakness, chronic sinusitis, a cyst behind my right eye, no immune system, syncope, etc, etc. Seriously, the list goes on and I’m tired of listing it. I’ve undergone countless testings, localized lidocaine, steroid and Botox injections all over my back, neck, head, face, knees, elbows, shoulders and spine. I’ve been through countless procedures and surgeries to try to get my pain under control so I can feel just a tiny bit normal by lowering my pain levels.

I honestly can’t remember what it feels like to not hurt all over. That’s why I signed off on them surgically putting tubes and wires in my head to try to make this nightmare end. I was willing to try anything and was promised so much by the doctors that actually took me on as a patient (back when I had the naive hope of being healed completely) until later, the doc came back to the stainless steel sterile procedure room, back where I had well over one hundred+ needles of lidocaine crunching into my skull and back three times a week, and I look up to my doctor who as he walks in, his head hung, not making eye contact after all these several procedures and time later. Still avoiding my eyes, he tells me that he has exhausted all “avenues” and procedures he knows of that can help my pain and quality of life–the things he so carelessly promised a twenty-something year-old that he could help get me back to my old self and finally be cured of this hell. I have been given up by so many Western and Eastern Specialists.

(Please do not tell me what worked for your friend’s sister’s cousin–I’ve researched and heard it all.)

Every single doctor I have ever been referred to has given up on me. Stop right there–try to climb into my life for a second and imagine how heart breaking it is to have the best of the best doctors GIVE UP ON YOU. The kind doctors and specialists who have always succeeded in helping their patients before don’t care for me very much when they come across my dysfunctional body because it’s such a challenge and they don’t have the time to work in someone who isn’t a textbook patient. It has broken my spirits so much as it feels like rejection in a sense after every single doctor appointment I go to that is obvious they don’t know what the hell to do with me besides prescribe Prednisone and some preventative migraine meds. I lost hope after the first dozen doctors and never wanted to go back, especially after one particular “Dean of Ethics” specialist doc at a prestigious university here in California who was telling me to lose weight (I weighed 125, he on the other hand weighed well over 280 pounds!) ignored the fact that the reason why he thought I needed to lose weight was because I was suffering from Cushing’s from taking such high doses of Prednisone(I.e. “Moonface” reaction to high prednisone dosages, I was on 65 mg/day , and as I tried to explain these things to him, he wouldn’t even bother to look at me. This pretentious doc simply looked down at my chart, skimming it through hurriedly, mentioned he had to get to his scholarship applicant (obviously a way more pressing issue for him!!), shut my file and proceeded to tell me that if things continue, I will die before I see my 30th birthday and that he was not willing to take on my case because I live an hour plus drive’s away. Believe me, I would LOVE nothing more than to name this doctor and put him on blast, create some kind of clever hashtag with his name and the University who gave said “doctor” the ironic title of being the Dean of ETHICS while treating his patient (me) with so much disrespect, speaking to me so horribly that I wished I could have recorded it, and the fact that he was obviously more concerned for a scholarship applicant than a very sick young woman patient of his, pleading for help and direction as to what to do with this pain and diagnoses speaks volumes of his character and "ethics".

This doctor was the last straw to steal my hope for a long time. I bawled my eyes out as soon as I walked out to the lobby. I stared out through the window at the palm trees, and realized my life will NEVER go back to the way it once was. I also realized that most of the people and doctors I will come to meet in my future will always treat me differently for the rest of my life, because I am a new Laura, and not in an upgraded kind of way like I wish it could be. I’m the sick version of Laura, and I’m not the best version of her in any way.

I never thought my life would consist of doctor appointments, pharmacology, and spending so much time in hospitals unless I was working at one. I am not the kind of woman who relishes in not being able to work and having nothing to do. I am unable to drive because of my syncope, migraine and medications. No wonder why I have lost so much interest in life when I can’t even do something simple on my own like drive a few blocks to get a drink from Starbucks and read a book for awhile, or even go to the mall and shop alone. I miss going on my spontaneous road trips to the beach by myself. The old Laura used to go out and spoil myself on my days off from work and enjoy spending time alone out in the world. Now, I can’t go anywhere without making sure it works with someone’s schedule to drive me and push me around (I’ve been stuck in the wheelchair since a couple weeks after my bday in March because of repeated adrenal crises this year and complete full body weakness, so I’m still fighting to get out and on my own feet) to take me where I need to go, and it’s rarely for the fun or spontaneity of it. Most the time, I have to write a list of things I need and hand over the cash to who is willing to help me out (or shop online) because I can’t even handle being out to run errands most the time.

I miss being the strong, normal, happily able-bodied version of Laura.

I hate how I allowed so many people to steal my hope, my joy, but I LOATHE these diseases the most for stealing so much about and from ME.

I miss being me in so many ways. I used to pride myself in my work ethic, my independence, and would find ways to liberate myself, “just because” I could.

Now all I’m doing is spending my days in bed curled in a tight ball, trying to not cry, staying away from all sounds, lights, and drama.

I just can’t handle things anymore like I used to. If someone starts to vent to me, I literally take on their problems and start going through an anxiety attack. I don’t know how to be a good sister, daughter, aunt or friend anymore. I feel like everything I try to do always falls short compared to what I used to be able to do effortlessly when I was healthy; how I was able to express the love in my heart for others was so much easier back then because I didn’t hold back. Now I can’t even get out of bed to be there for the big and small events in the lives of those I love.

Can one still be considered a friend if they literally can’t handle hearing your problems without getting ill and can’t commit to hanging out, because chances are they have to cancel?

I know it’s my first post, and it’s not inspirational–it’s real, completely honest and from my heart. In the beginning of this I said most people wouldn’t know I’m ill and I like it that way, but when that means people start to question whether I truly am ill and say “it can’t be that bad” because I “seem just fine”, it’s like I am hurting myself in a way by not letting people in to see or know I really am struggling, badly every second of the day. It’s like I do myself an injustice in a way when I try to act like I’m fine and paint the smile on. I struggled for a long time when I was first diagnosed because I was open about what I was going through and my “friends” back then weren’t very supportive and I felt so alone. I thought I was burdening them and making them get angry with God that I wasn’t getting better. After awhile I felt like I had to lie just so they could hear what they wanted to and leave me alone, but then there were also those fake people who asked what was wrong with me just to know to be part of the drama – you know the kind of people I’m talkin about!! Everyone has those fake people in your life that pretend to care only to use what you’ve shared with them as a topic of gossip for later. I isolated myself for longer than I care to admit, so I’m not gonna sugar coat this first blog of mine. I am not appeasing anyone here, this blog is for me and those who know what I’m going through because they’re going through it, too. This is my outlet, not a place where I need to force a smile and find the silver lining in the clouds.

Just “let me be” here. It’s the only place I can speak my thoughts without judgment for not being optimistic all the time.