Friday, December 30, 2016

Facing Forward: Valerie

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name:  Valerie
Location:  North Carolina
Diagnoses: Fibroymalgia, CFS/ME, Hashimoto's Thyroid Disease, Raynaud's Disease, MTHFR gene mutation, IBS, Osteoarthritis, Scoliosis and Lyme Disease
Age at Diagnosis: I was diagnosed with Fibro, CFS, Osteoarthritis, IBS and Raynuad's disease in my late thirties. My Hashimoto's, MTHFR genetic mutation and Scoliosis diagnosis came just a few years ago and I was diagnosed with Late Stage Lyme Disease at the age of 43 this past March. I have been sick for nineteen years.

How are you currently treating your condition?
Lyme disease is difficult to treat and there are many, many options. Right now, I am under the care of a Lyme doctor who is treating me with antibiotics, tinctures, and supplements. A typical day of treatments consists of over fifty pills and tinctures which I take at various times throughout the day. It is a lot to handle, but I am hopeful to see improvements soon!

I am also taking supplements to support my MTHFR issues. I see a rheumatologist for my arthritis problems as they have become much more severe within the past year. I try to eat a gluten-free diet to improve my IBS and Lyme symptoms.

Since I homeschool my children, I try to rest when I can and not set my expectation levels too high! I have learned to pace myself and take frequent breaks.
What are the biggest challenges you have faced since your diagnosis?
When I was diagnosed with Lyme disease this past March, I was relieved to finally have a real answer as to why I had suffered so much over the past nineteen years. That relief was short lived when I realized that Lyme is not recognized in North Carolina by the CDC or main stream medicine. I have had to fight every inch of the way to get the treatment that I need.

It is equally difficult to explain my illness to my friends and family. They often struggle to understand what I am going through and that I am not able to do the things I used to do!

Treatment for Lyme is difficult at best. The treatments that have been prescribed for me, have made me sicker than I was to begin with. The common saying that you have to feel worse before you feel better definitely applies to Lyme disease treatments. I hope in time to see a real improvement.
What are your favorite tips and tricks for managing everyday tasks?
I have a terrible habit of pushing myself to the limit.

Learning to pace myself and take frequent rest breaks has been a real learning curve for me. If I fail to do this, I can count on being down for days. Pacing, as boring as it sounds, is my best friend. 

My mantra has become Rest to live and live to rest.
How do you manage to keep facing forward every day?
Being real and wearing the reality of the sickness I am fighting on my sleeve so to speak helps me to feel that I am not so alone. By letting those who are closest to me see the struggles that I face, they are able to help me when I need it the most.

My family is my biggest support system, I am so thankful for them.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
If I could go back, I would go back nineteen years ago and ask to be tested for Lyme disease. Because I did not realize that Lyme is in North Carolina, I did not ask to get tested when I first got bitten by a tick! By waiting nineteen years, this disease has progressed to far beyond what it should have. It has permanently damaged my heart and nervous system. I am forever changed because Lyme did not enter the picture as a possible diagnosis for so many years!
Do you have a blog you would like to share?
I blog over at Lilacandlyme.com about my journey with chronic illness and the insights and lessons I have learned along the way. If you are interested in learning more you can connect with me there. You can also connect with me on Facebook, Twitter, and Instagram.

Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.  

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