As I approach the fifth year of my life with Loin Pain Hematuria Syndrome, I feel the need to return to this page and start over on its description. Life with a chronic illness is highly unpredictable, so many things have changed in even just the past year or so.
(First, a quick summary of my condition: I have a very, very rare and poorly understood kidney disease that causes chronic unbearable pain throughout my back and abdomen, sometimes further, and during flare-ups it can cause severe nausea, vomiting, dehydration, and of course, pain beyond your worst nightmares. I need to be hospitalized very often in order to keep control of my pain as well as my weight, which is terribly low. There is no exact science behind this condition -- no treatment, no cure. It is a life sentence. Basically I have been told that controlling the pain is the only way to maintain my life, and at the same time, I was told to never expect to see a pain level below 6/10. After developing this disease at 26 years old, I began finding it difficult to function on a basic human level; I am unable to concentrate on anything for very long, and I am stuck in bed almost all day every day. My muscles are so atrophied that at times I find it difficult to walk without help, and when I can move around a little, it is exhausting. As expected, living with chronic severe pain causes a lifetime of emotional pain as well. Every single morning is a conscious decision not to just give up, no matter how tempting. This disease has robbed me of my overall health, my independence, my friends and family, my pride, likely even my ability to have children. I have no idea where I will be in a week, a month, a year, or ten years. Needless to say, things aren't easy).
Most importantly, my illness finally forced me out of work. I was devastated to lose my job, and as much as I want to stubbornly leap back into the workforce, I have to listen to the signs of the universe telling me to slow down. I have not returned to work, but I also was not able to claim unemployment, and applying for disability is a years-long process that will require having a lawyer before I even begin, which requires money I don't have. I was finally forced to move away from my beloved home in Glenwood Springs, which has caused unbearable heartache in my life. I have had to move homes four times since then, which has made obtaining even sub-par medical care pretty much impossible until this point. I still do not have a stable, steady situation, so I live in fear of the day I am finally told that I cannot be treated because I have seen one too many doctors. Local hospitals are already refusing to take care of me, so home maintenance-care is key, but if I keep moving around, no doctor will help me. I am still being hospitalized way too often, and I cannot cope with a simple stomach flu without medical attention because my body has just had it. The more I am hospitalized, the less people want to help me. I need to start sticking with one place in order to repair my ability to obtain help. I am therefore desperate to maintain a home in my current location -- Thornton. Nearby is fine, as long as I'm in this general area so I can continue to see my current physicians.
Here, I have finally found the doctor I was looking for. He is a pain management specialist, and he is brilliant. I have not been seeing him for very long, just a few months, but that was more than enough time for him to put me on a waiting list for surgery. I am awaiting the phone call to schedule the implantation of a Spinal Cord Stimulator, which is a medication-free mechanism that essentially jams the pain signals being sent to my kidneys, in hopes of confusing the pain into nonexistence. Of course, nothing is foolproof, and if this surgery fails, I'll be looking at a different one after that, but I'll cross that bridge if and when I come to it.
My living situation right now is only what I can call very blessed -- dear friends of mine have taken me into their household for now, knowing that I cannot work. The obvious catch here is that it costs them a small fortune to support an entire extra human being who can hardly contribute to the household at all. I have not had a penny of income in over a year now; my only money has been in the form of gift cards on my birthday and Christmas. In a perfect world, I'd be paying my share of the rent and feeding myself independently; of all the things I value in life, my independence tops that list. It kills me daily to sponge off of the people I love. The best I can do right now is to try to spread out that burden a little bit in the form of re-sharing my GoFundMe page. I believe it only fair to share with everyone exactly where their donations would be going:
1) Living expenses: Above ALL else, helping with rent payments, plus grocery expenses, and basic necessities (think shampoo).
2) Fuel: my car has been sitting in a hospital parking lot for weeks now because I cannot afford to get it back home. I am pretty worried that it's been towed by now, actually, so you see where this makes the top of the list!
3) Medical care: Though the government is assisting me with my health expenses right now, I never know when that will cease. I never know if they will choose to stop covering me, or if they will choose not to cover my spinal surgery. I have NO idea how much this surgery may end up costing me, so I have to be prepared for anything. Waiting any longer for this operation is not an option. I also just need to be able to pay for co-pays, medications, and I have a dental bill that needs attention from when I knocked six of my teeth out during a seizure last May.
4) On that note, avoiding debt. I absolutely cannot get into debt, but my needs are increasing.
5) Art supplies. Yeah, this one is a bit random, but in order to sell any artwork, I need to be able to create it. And right now, the cost of supplies seems to be what prevents people from being able to purchase anything from me. I'd like to be able to meet my clients halfway!
6) Savings. If there ends up being anything left after the above, it would thrill me to be able to save a penny or two. I need to be thinking ahead, and this includes finding my own home, but we all know how hard it can be to throw down a hefty deposit plus rent at the beginnng of a lease, so I want to be ready when the day comes for me to be back on my own. Hopefully by then I'll have income from SOMEWHERE, but I'd like to be ahead of the game.
Those who know me well know how much it eats away at me to ask for help, and they also know that I will wait far too long to ask for that help. I'll wait until things are a mess, and then I'll give in. Guilty as charged. I am suffering a great deal of anxiety these days over my inability to care for myself at all, and sadly, most of this comes from my complete lack of funding. I've finally decided to reach out to you all, because it isn't just affecting me anymore. I am burdening others beyond what is reasonable, and that is never okay with me. So I ask for your help in hopes of easing some of the burden that comes with being close to me. Please do not give any more than you feel comfortable giving; please do not put yourself out in any way; please do not feel obligated! Every little bit does help, but I know it also helps you all, so if you need it, keep it!
Thank you so much to everyone who has stuck by me these past several years as I've battled my disease, tremendous loss, and the toll it all has taken on me. The person you once knew is still in there somewhere, I promise. I am hoping with all my heart that she will be able to make a comeback after this surgery. Until that day, I hope that you all will continue to ride this crazy roller coaster with me. I stay on it for you. Because without you, who am I? :)
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