Shelley S. from Calgary Alberta Canada
Updated: Oct 13
Thank you from the bottom of my heart for reading my story. This is my journey over the past 7+ years ....
For the past 7 years I have had ongoing battles with chronic pain, fatigue and migraines. I used to have a fairly active lifestyle and then the aches and pains that started as a minor nuisance (I chalked them up as normal after I turned 40!) became a normal every day thing. Going for walks, sitting or standing for long periods, or even laying down continued to bring pain and discomfort on a daily basis.
Over the years, various physicians had diagnosed me with illnesses ranging from depression, lupus, to fibromyalgia. Imagine having constant migraines , severe sleep issues, tremors, feeling chronic joint and muscle pain throughout my entire body, extreme flu like symptoms, and having your doctor shrug their shoulders to tell you that it is all in your head and I should make an appointment to see a counselor and get on antidepressants. I tried it all but to no avail, my symptoms just kept getting worse. Many didn't believe that I was ill because I didn't look sick on the outside but I knew something wasn't right.
Spring of 2015 I was referred to a Wellness clinic and after further testing and paying $500 to send my blood to California as they don’t test al 3 markers in Alberta for Lyme, I discovered that I had Chronic Lyme Disease, co-infections, and possibly early onset Lupus (which was later misdiagnosed, big surprise). It was a relief to finally have a diagnosis, yet never knew what it was or how I got it. I then learned that Chronic Lyme Disease is not an illness that is widely accepted by western doctors. In fact, many are of the opinion that Lyme Disease doesn't exist in North America, particularly urban communities. You could Google thousands of websites, trust me I certainly have, to form an opinion on Lyme Disease but the bottom line is, I have it and so do and millions more with the numbers growing rapidly every year.
Since April 2015, I had received ongoing treatments for Lyme through the wellness clinic. The treatment process to date had included strong doses of antibiotics, probiotics, penicillin injections in my buttocks, mineral IV's (which I couldn’t take after the second one due to small collapsing veins) and a multi-range of supplements. Some of these treatments are covered under benefits plans, however, most are not if it’s not on a prescription pad’.
Due to my illness, I was unable to continue working during the middle of 2015 and had to quit my job under my doctor's recommendation as it was getting harder and harder to maintain a regular work schedule due to the chronic pain, foggy head, and fatigue just to name a few. Obviously, losing my income has had a negative effect on monthly income, but was managing so far because the treatment costs were somewhat manageable, however, I had then learned that those costs were going to go up considerably depending on treatment and through what source.
In 2016, my course of treatment (as mentioned previously) where I received as many as 3 penicillin-based injections per week, each costing $100. This course of treatment lasted a minimum of 6 months and after all those treatments the doctor told me that it didn't work and they couldn't do anymore for me leaving me in more pain than before my treatments and thousands of dollars in the hole with no improvement.
After all my research day after day, I heard of a Chinese medicine doctor, whom is a godsend! After my first consultation she ran different tests and found many co infections that were never tested for or dealt previously with along with the antibiotics/penicillin injection treatment just worsened my condition. Since then I have been working with her on and off for the past few years now with many new supplements and Chinese medicine, which I just received wonderful news recently that the treatment is starting to destroy my co infections which means once it does we can start treating the Chronic Lyme Disease.
That being said and finally after such negative and disappointing news from my past treatments I thought I was finally on the right track but yet again the financial stress ‘paying out of pocket’ derailed, with every doctor appointment costing me no less than $700 every time (with this amount going up the longer I had to quit my treatment on numbers of occasions, praying every day for people like myself with chronic illnesses that there will be a cure or more supporting insurance companies that can help us.
Fast forward to year 2020 .... well I had stopped treatment a few times over the past few years as I couldn’t afford it, then because of all the antibiotics I contracted C. Diff, which is an intestinal disease. I had also heard about trying to get a fecal transplant that it would help with my Lyme and infections but it would cost me $2500.00 (I had a colonoscopy and the results indicated my cdiff was gone after treatment).
Needless to say, my life has been turned upside down. I lost many friends and am terrified to work a full-time job but don’t have any other option in order to stay on a treatment and pray I go into remission.
Due to COVID-19 I lost my job so once again I am unable to be on my full treatment as we can barely afford living in this economy on one income plus treatment expenses and of course, finding another job has been unsuccessful, which it terrifies me - if I do get one will I be safe having this compromised immune system and exposing myself to this pandemic?
My spouse, mom, dad, and sister have been wonderful through it all but I even feel and see that it exhausts them over so many years and they try to understand but they can’t. Unless you’re going through it you can never truly know how much pain physically and emotionally we go through. I feel like I mourn the loss of who I used to be every day.
I just want my life back ......
I would be forever grateful. Words can't express how much appreciation I have for each and every person who has supported me, and those who have walked away from me is a blessing in disguise due to the stress of having unsupportive people in my life – this is still heartbreaking considering one is my father.
I just want my life back .....
Much, much love to you all that battle a chronic illness, healing hugs and prayers go out to everyone every moment of every day.