Some time ago, when I was but a young girl, I lost my faith in God, humanity (most of it anyways), and in this world every surviving. I learned as a little girl big churches are full of deceit, hypocrites, liars, cheaters, people pretending to be something they are not to save face among neighbors. This was not a religion nor community I wanted to be a part of. I stopped attending church as soon as the decision was mine to make. Before you think I need to be saved in this regard, I am not lost, I am solid in my core believes. I have maintained my own Spiritual concepts since then that I based my faith, and moral code in. These are the things that help shape me into the person I want to be.
Some time not too long ago I lost faith in myself. I was shaken to the core by a couple of medical diagnoses, and that triggered a process in which I felt like I lost myself. Actually more like I felt as though the old me died and I was being forced into being this new version of myself that I didn’t ask to be. I lost faith in my ability to adapt, in my ability to survive, in my ability to live under this new circumstance and expectations. Slowly I have been working through these complications. Someday my faith in myself will be as strong as it was before I got sick.
You see while I may not have the typical faith when it comes to religion, and at the moment my faith in myself is a little shaky, I’m not faithless, just a little jaded.
Over the last two years in facing my illness I have faced many challenging moments. The struggles with the daily symptoms alone have been enough to make me want to give up at moments. The side effects to my meds are debilitating from time to times. Then you throw in a flare every few weeks or months and its down right overwhelming.
Yesterday as we were leaving my doctor’s office my best friend asked me a difficult question on our way back to the office “When do you know to take a day off because of this stuff?”. I sat for a few and then eventually was able to breathe long enough to tell him that I hadn’t figured that part out yet. I don’t know when to stop. I don’t know when I’ll be okay with my life pausing long enough to take a day or so off for a flare. My schedule right now is set up that on days I don’t have clients I mainly help out around the office and am here in case we get walk ins. It is a great set up. After my shots, I didn’t see any reason to go home and feel horrible for breaking my word about being there instead of at work. I already felt bad enough about needing to leave for the hour it took for us to run to my appt. Commitments and promises keep me moving forward. Giving someone my word, gives me a reason not to give up. It allows me to know that even when things suck really bad because of Lupus, I can still be a dependable person. It may not always be on my terms because my body gets hijacked from time to time, but I will always follow through with what I have committed to.
During flares it is almost like I go through this emotional drive to prove to myself and those around me that I’m okay, even when I’m not. There is a whole lot of frustration with the extra meds, I loathe being on prednisone, I feel yucky because of the flare, the extra pain distracts me, and the nausea is often enough to where it impacts my ability to eat. I approach each flare with the goal of doing what I feel is best for me. I’m learning quickly that no matter what you decide to do, or when you decide to do it though, there will always be criticism. Sometimes it is meant well. Sometimes it is simply because you didn’t do what the person you thought you should do. Those moments can make me feel like I have had the wind knocked out of me, and it is another instance where I consider giving up in this journey.
Continuing to fight, continuing to slowly put one foot in front of the other, and to deal with the symptoms as they come, and hope each day is better for the other is how I make it to the next morning a lot of the times. Hope gets me through the other times. When I’m all out the other two options, I fully admit I get through those moments I have to find one of my stronger support system members and let them help me. It hasn’t been an easy journey, there have been a lot of bumps and wrong turns along the way….and I have miles to go before I sleep.
I’m not one to shy away from spicy food, not even my chronic illnesses will change that! I love heat, when done right. Call it my little piece of rebellion, my little corner of culinary masochism. I am a cook, I can create some amazingly tasty dishes. I also know my way around spicy foods. Not everyone shares my love for the burn. So I have over the years adjusted my desires to fit within limits. Occasionally we will be out for a meal and I will indulge in a dish that is above the comfort levels just so I can feel the warmth of the spicy burn as it engulfs my taste buds.
Spicy food really isn’t a form of self-torture for me. I truly do enjoy it, when it is done right. Throwing hot stuff in a dish just to call it HOT does not deem it a Spicy dish done right. Spice is meant to augment the flavors within the dish not to be the flavor. It should compliment the dish, not overwhelm it. This makes me want Thai food, it is one of my favorite ways to consume the heat, and one of the best ways to achieve the Ring of Fire!
This was written in response to The Weekly Challenge. I feel I need to express this is in no way a suicidal expression. This does express my concern that my conditions may lead to my death some day. hopefully no time soon, that is the nature of both of my conditions though. It is something I’m having to come to terms with.
I have journaled for as long as I can remember. It’s never been a continuous thing though. There are long parts of my life that go undocumented and there isn’t a record of it, that is in any concise easy to follow medium. There are bits and pieces of it every. I like to write though, and I have over the years became pretty good at various forms of the art.
When I became sick last year, I started writing again as a way to cope with the anxiety that I was under. The not knowing, the fears of not having a diagnosis, and then the fears of finally having a diagnosis, then that diagnosis turning into two. I was diagnosed with Antiphospholipid Syndrome in November, and then Lupus earlier this month. The anxieties of changing doctors, all of it. It’s been a journey to say the least.
I finally decided to make my journey public, because I know there are others out there that can relate no matter what their chronic conditions are, we can connect and can find common ground to relate to one to another and find ways to support one another. Success for this blog and for myself is finding a way to grow from this, to help others and to remain positive when everything seems to be stacked against me. I will prevail, I will endure, and I will fight the good fight.
This song has special meaning to me. I can’t get it out of my head. Around the time I started hearing it excessively on the radio, was the time my body started failing me. It will forever be a reminder of when my body started showing me signs of having Antiphospholipid Syndrome. and Lupus.
I know my family and friends have probably heard me talk about APS and Lupus under they are tired of it, and unfortunately they do not always hide this fact very well. I admit it, I’m obsessed. I can’t stop thinking about the illnesses. I can’t stop researching, learning, and considering how their existence in my life will impact my future, my husband’s future, my mom’s future, my best friend’s future, everyone’s future. There’s a whole lot that they have already changed and they have only been a part of my life for a few short months.
I’m at Dr. C’s (my PCP’s office) at least once a week for my weekly PT/INR check to see how well my Warfarin is doing at anticoagulating my blood.
(And the blood’s run stale) That line of the song always makes me skip a breath. Because in a lot of ways, due to APS, that’s exactly what my blood does, due to the antibodies, it thickens and it runs slower through my veins, and therefore increases my risk of clotting, it is stale.
I do consider my illnesses, Demons of sorts, Demons I will live with for the rest of my lives, They have symptoms, I will learn to live with, they also have anxieties they cause, and because of being chronic illnesses, they have made me have to think about a lot of things normal 30-year-old women don’t have to think about, obsessively.
Had you met me when I was a curly-haired little 5-year-old and asked me what I wanted to do when I grew up, I would’ve simply answered: I will be a famous writer. This remained a dream of mine throughout my childhood, through my awkward years as a teenager. I saw my way through my twenties still saying, someday I WILL be a WRITER!!!! Here I sit at 30, wondering how I’m going to achieve this goal of being a famous writer and I finally realized where I was coming up short. The words won’t write themselves.