Every day is a new day

It was August 2016, I had just returned from an awesome adventure in Gunnison National Park, CO when my world was turned upside down. I began to experience aches and pains quickly dismissed as battle wounds from my recent mountain adventure.

After a couple weeks had passed the pain and swelling spread throughout the left side of my body, traveling from lower back to wrist and foot. I couldn’t grasp a teacup, was having trouble opening doors, operating zippers and buttons. I hadn’t connected the pains I was having at that time nor did I understand what I was up against.

I no longer felt like the same person that I was just a month prior nor was I capable of putting a brave face to what was happening. I began to feel scared. Really scared. And, for the first time in my life, I went from playing the role of helping others to the one always seeming to need help. My husband, children and mother turned into caregivers. I felt tremendous guilt over all of the help required by others just to get through a day. I feared the worst wondering if I would ever be able to function again.

I was misdiagnosed twice before landing in a hospital bed unable to walk. I underwent every imaginable test and scan. I was treated by several specialists via a series of the strongest antibiotic cocktails administered intravenously. I lost hair due to reaction of all of the hard core drugs. I was laid up missing my kiddos field hockey and baseball games, weddings, girls nights, day hikes . . . well, you get the picture. I missed my mobility, independence and life as I knew it.

While hospitalized with the condition now traveling from left to right side of my body, I was introduced to a Rheumatologist who ran additional bloods and quickly connected the physical pain, swelling & presentation to chronic inflammation resulting in the diagnosis of Psoriatic Arthritis.

It took three months for the prescribed biological to kick in. After six months, and some orthopedic shoes, I started feeling semi-normal again. Eight months later, I became obsessed with reading about autoimmune diseases convinced that what was happening to me was a condition that I could conquer. I hung on to hope that the trigger was bacterial and after a year passed, I could discontinue my dependency on the biological that kept my immune system from attacking my body.

Fast forward to today and no such luck . . . .I still rely upon the biological, but have not given up the fight. I have come a long way. I can function and my inflammation levels are down. And, while I accept that I am genetically predisposed (HLA B27), I continue to research and experiment with my diet being mindful of triggers.

Two years ago, if you asked me what an autominnue disease was…I couldn’t tell you. Instead, I may have simply replied “you are what you eat” not fully realizing the depth of this truth. At that time in my life I felt fantastic. Never looked better and was loving life having fully committed to a plant based whole food diet. The daily menu read fresh fruit, veggies, nuts, seeds, legumes & quinoa ( and plenty of them). I had replaced flour bread with Ezekiel sprouted grain products. I even replaced traditional flour pastas with lentil and chick pea versions. It was all about how much I had gained instead of lost. I was far down a path of wellness, or so I thought.

I was operating under some very basic rules: If it was plant based, unprocessed and did not contain additives such as oil, sugar, meat, or salt – the more the merrier! I had established some go to favorites not realizing that the combination was a perfect storm for leaky gut and chronic inflammation.

Since then I have limited some foods consumed prior, and in abundance, such as; evening shades, legumes & quinoa that were later proven to aggravate my condition. I have also introduced healthy omegas from sources such a fish, coconut, olive and hemp oils.

And, while I still believe today that “you are what you eat”, I have learned that a diet is not a one size fits all solution. It is instead a personalized and delicate balance.

Listen to your body and find your own balance

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (7)
  • Fatfinger
    6 months ago

    I’m HLA-B27 too.

  • bbthodges
    7 months ago

    Wow! I know what you mean. When I was first diagnosed about 6 yrs ago, I searched through everything I could find…the internet, magazines in doctors’ offices, my rheumatologist’s office, etc. I was scared to death about what I might be facing and for the rest of my life.
    One thing that helped me was that I finally had an answer to so many things that I had experienced for a long time.
    The exercise and diet part is difficult for me. I am 70 yrs old and have numerous conditions in addition to the PsA. Having IBS since a young girl had a strong influence on what I can eat. I am taking physical therapy now to help my gait and strengthen the muscles in my legs. I have Peripheral Neuropathy in both feet and legs and have no feeling like sticking a needle and I don’t feel it but I still have terrible pain in both. I am loosing the strength in my legs and have a big problem walking without falling. I am using a walker now.
    Anyway, I had some knowledge of this type of disease. I have hemachromatosis which is a blood disease that causes too much iron in your blood. The treatment is to have phebotomies to take off blood so that your body will make new blood with less iron. The bad part of this is that you are born with it (it is hereditary) but it is not diagnosed until you are an adult and have to get a special blood test. I was diagnosed when I was 50 years old. What happens with this disease is that the iron attaches to parts of your body and that is what causes so much trouble to you. It particularly attacks the liver and can cause cancer and be fatal. hemachromatosis itself is not the devil, it is the seriousness the iron causes.
    So these types of auto-immune diseases are very serious and can really scare you. Each day is a new experience.

  • marcisnydee author
    7 months ago

    @bbthodges I’m so sorry to hear of all of your struggles. You certainly are a fighter! The connection of age/timing with receiving accurate diagnosis is scary making it all the more important to share like you have. Thank you so very much. The more we share with each other the more knowledge we have I advocate for ourselves. Do you have much help in your daily routine from others? A network of supporters family and friends? Any alternative treatments or things you have found that help your day to day outside of PT? Keep up the good fight

  • VickiN moderator
    7 months ago

    Wow @marcisnydee, thank you for sharing this! You know, I too followed a plant-based diet to the letter and found my autoimmune disease getting worse and worse (it seemed so bizarre). I only discovered later that nuts, beans, and bananas were aggravating my condition. I’m glad that you are continuing to live your truth and listen to your body. Warmest wishes to you, I’m thankful to have you here.
    -Victoria, Community Moderator

  • bbthodges
    7 months ago

    Wow! VickiN it was quite an eye opener with your message to marcisnydee about the foods that are not good for you. I have been eating the same beans, nuts and bananas. It is so confusing to me as to what is best for me. I have gotten so many ideas for diet that it drives me crazy. I don’t know what to eat that I can afford to buy. Thank you so much for all your helpful messages. You are so kind and helpful.

  • marcisnydee author
    7 months ago

    Thanks, @vickin! The diet connection deserves more attention and research$$$. In absence of extensive medical research we have each other. Our voices and sharing of stories truly does make a difference. If publishing my story helps just one person then it is well worth the time. I think creating a journal of daily diet and lifestyle choices can help understand triggers. Well before I began experiencing the symptoms of PsA I started blogging about my plant based nutritional journey not realizing how valuable this information would be to me later. I eat a banana every day. Will have to experiment with eliminating. Nightshades and beans were major culprits for me.

  • bbthodges
    7 months ago

    Marcisnydee you are so right about researching diet for this culprit. I am so confused about what is the best diet for me that I like and can afford to buy. With PsA and IBS I am very limited as to what I can eat. Some days I have terrible nausea all day and then again I have terrible diaherra all day (never can spell that word right). Having very limited resources it is very to get items that some research suggests. I really do appreciate what you and VickiN say about your own experiences with diet. Thank you so much. Have a wonderful day.

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