Welcome,

 

If you have been following my Facebook posts for the past three years, you know I was diagnosed with a severely painful chronic illness known as Complex Regional Pain Syndrome (CRPS). However if you are not friends with me on Facebook let me explain it for you: CRPS is a nervous system disorder in which my nerve signals are constantly telling my brain that I have trauma in the right side of my body. It is the most painful disorder you can have. So as a result my body has a trauma response and is constantly sending signals for my body to respond trauma. This all means I’m in extreme levels of pain 24/7. This is not an over exaggeration, it literally means it never stops or shuts off. So, I never get a break from the pain, just some days might be lower pain days than others. Because it’s a nervous system disorder and not a muscular skeletal disorder, there is no comfortable position I can sit in that may lessen the pain. However, it affects my muscles, tendons, joints, etc. over time, which in result just adds to the pain. Because it attacks my nervous system, it can affect anything in my body that the nervous system controls, which is pretty much everything. So many of my organs have problems as a result of the CRPS. Since my CRPS started I have also been diagnosed with Gastroparesis, POTS, and I have also begun to have simple/complex focal seizures, which if left untreated for years will turn into grand mal seizures. I am on year three of battling this disorder and most individuals around year 5 or 6 of being untreated are having multiple grand mal seizures everyday.

 

So to be able to treat all of these accompanying disorders, we need to treat the cause to all of them, which is my CRPS. You cannot cure CRPS, however you can manage it and put it into periods of remission. To this day we have only found things to slightly manage my CRPS. We have tried every FDA approved treatment out there, including a spinal stimulator that resulted in me going septic twice, and undergoing multiple surgeries.

 

The stimulator was what I thought was my last shot at relief. I’ve spent many days full of tears and pleading with god to give me some sort of relief. I have really struggled lately to understand why I have been cursed with a life full of illness. My positivity has been draining. My body is absolutely exhausted from being poked and prodded and sliced opened and pumped full of drugs. I finally said enough is enough and I wanted to give up. I was tired and didn’t want to fight anymore. I was no longer enjoying life; I was only surviving it. I got to my lowest point and I just wanted to lie in bed and die. I no longer wanted to be in pain.

 

My family was devastated to watch me hit this point of losing all hope and feeling helpless. The doctors weren’t helping and so my family turned to the Internet. My grandma had recently read a book by a doctor out in Arkansas that specialized in CRPS, and had a clinic called “Spero Neurological Relief Clinic,” where she had a large success rate of placing patients into long-term remission or at least getting them down to pain levels of like 2/10. We had nothing to lose at this point so we looked her up and contacted them. They responded right away and my mom and I were on a flight to Arkansas that following weekend for a introductory consult. It was absolutely AMAZING!

 

They not only will be able to likely place me into remission, but also have an idea of where my life long health issues have stemmed from. If you don’t know my story or me well let me fill you in. Ever since I was 6 years old I have continuously battled with my health. At 6 years old I was diagnosed with viral meningitis, I then fought and survived cancer once and relapsed and beat it again, I was then diagnosed with asthma and cardiomyopathy as a result of my chemo, throughout middle school, high school, and college I had constant infections and viruses including but not limited to 6 months of mono, meningitis again and multiple cases of pneumonia and bladder infections. I was constantly catching every single viral infection that was going around. It seemed like my immune system could just never catch up. Then the pain started and everything just continued to get worse. Since December I have not spent a month without needing antibiotics for some sort of bacterial infection. We have always just assumed that because of my chemo, I will always struggle with a low immune system. However this clinic said that since the day I contracted meningitis, my body has not gone a day without fighting some sort of virus or infection and that is because my viral and bacteria load in my body has always been super high resulting in my body never being able to rebound. If we don’t solve this I will likely continue to be sick for the rest of my life.

 

This clinic is very holistic about their approach in that they treat the body as a whole rather than just placing band-aids over my CRPS symptoms and hoping for the best. I will be linking their website at the end of this so if you’d like to go read more about their clinic please do so. They have given me so much hope back, and for the first time since being diagnosed I can actually see a light at the end of the tunnel. Since being diagnosed I have mourned so many parts of myself and my life and my future. I can finally actually see myself having a some what normal life and a family of my own with the skills this clinic will give me to manage my disorder.

 

How this clinic works is I will need to move out to Arkansas with my mom for 3 to 4 months (some patients need more or less time in the program), and I will be going to treatment from 9am to 6pm every Monday through Thursday, and then Friday through Sunday are expected rest days. As part of the program they make new habits for me and create a whole new lifestyle that I am expected to keep up for the rest of my life and this will allow me to keep myself well managed in low pain. They will also help take me off most of my medications and give me the skills to managed my disorder with new lifestyle habits rather than meds, but if they feel I just cant do it without the medication, they will keep me on it and monitor me. This means no more pain meds!!!!! If you know me, you know this is extremely important to me as as I would like to have children and so I would like to manage my CRPS without medications. Between each treatment I will also be able to socialize in their common areas with other patients. When we were their for our initial consult it was so heart warming to see that every patient knew each other and they were all their to support each other and motivate each other. It is an extremely positive environment and network of people to be apart of.

 

As for the actual treatments they will be performing, there is a whole list so if you’re interested to see what they are please visit the link below. None of them are invasive so no more cutting, poking, or prodding. They do not allow any unnecessary trauma to the body until you are well managed and in remission. Meaning no surgery, if I break a bone it can only be taped and not splinted, no stitches or staples, no dental work, etc. We have to find ways around all of this, as it will cause my CRPS to spread to other parts of my body. You may also be wondering how these treatments are any different from what I’ve already tried and well they are not FDA approved. The downside to that is it is completely out of pocket in terms of payment. The program itself, not including supplements, medical supplies, food, housing, travel, etc. is a low ball of $50,000. Absolutely none of this is covered by my insurance, but I have no other choices. This is my shot at finally starting a life for myself! Imagine having to rely on everyone around you for most everything and having your disability hold you back from experiencing so much. Its extremely depressing and secluding, and I finally have a shot at solving all of this!

 

Right now my appointment is set for October 18th, but they have people that have to leave the program due to needing emergency surgeries, are just not mentally or physically strong enough for it yet, have family emergencies, etc. so they turn to their waiting list and get people in earlier than their set appointment. So they told me to anticipate an offer for an earlier appointment here soon.

 

So I very graciously ask you to please help me out to get me to Arkansas so I can receive these treatments and be granted my quality of life back. Please donate and share as much as you can! If you have any questions at all, I am very open and willing to share so please reach out! I will be sharing my journey during this program via my Facebook and my moms Facebook so everyone can keep up on my progress.

 

Thank you to each and every one of you who have taken the time to read this, share it, and donate. My entire heart is grateful to you!! This means absolutely everything to me.

 

With all my thanks and love,

Anna

 

H.O.P.E.- Hold On Pain Ends

 

(the link to Spero clinic-> Spero Clinic )

(Also their Instagram and Facebook are both called “Spero Clinic” if you would like to follow them. They are constantly posting updates on patients, and also are posting weekly graduation ceremonies for patients that finish the program.)