Living Life with WRAP and Autoimmunity Illnesses – Linda’s Story
When life feels out of control and many triggering events occur, it can be difficult to maintain wellness and trust that you are the expert on yourself. Using your WRAP can help to maintain your quality of life as you continue your recovery journey.
by Linda Meyer
When I look back to the time when my first psychiatric crisis appeared, I didn’t realize there was something happening that eventually became one of the most complicated triggers of my life. That trigger was having physical health struggles and having 5 auto immunity illnesses; Hypothyroidism, Sarcoidosis, Lupus, Pernicious Anemia and a clotting disorder called Antiphospholipid Antibody Syndrome.
That trigger was not only the physical and emotional toll of not feeling well, but also the fact that doctors could not diagnose why I was not feeling well until many years later when I had a biopsy, and again years later when I almost died from a massive saddle pulmonary embolisms after being released from an emergency room when they misdiagnosed me.
In the earlier years I experienced fevers, debilitating joint pain, memory and recall struggles, severe headaches, muscle pain, vision problems, mouth sores, stabbing chest pains and severe tiredness. At that time I was a mother of young children and it not only became very hard to manage myself physically but it became very difficult to care for my newborn baby and toddlers.
Not understanding this led to subconsciously being re traumatized and hypersensitive to many of my old triggers of past trauma that I was totally unaware of until I became familiar with WRAP and learned how to ‘peel apart the onion’ to reveal the true triggers and learn to manage my life more effectively.
Some of the triggers I experienced included:
- Not having control of my body
- When my body flares
- Doctors not being able to help me as I thought they should
- Being misdiagnosed
- Not trusting many doctors
- Physical pain that I could not find relief from
- Side effects to medicines (which caused more diagnosis’)
- Re-occurrences and flares of symptoms
- The challenge that no matter how much I plan, each day will be unpredictable
- Not have control of my life
Not having this control has affected not only my life but my family’s as well – especially taking care of the house, cooking and maintaining the scheduled events with my children. This was, and still is, a very important trigger that I have to constantly re-frame, make sure I don’t criticize myself and begin the negative thinking or what I call “stinkin’ thinkin”. When this becomes difficult, I make sure I use my Wellness Tools – especially the fun ones I did as a kid, like playing pinball.
When I have a flare with my physical symptoms, it usually tells me I have been doing too much and I have learned to just be gentle with myself and do what I can without feeling inadequate or not good enough. I have also learned to validate the way I feel and stay positive, although this can be difficult, I try anyway and make sure I maintain my Daily Maintenance with my routines – yet allow for some expanding of those routines in regards to time and expectations.
Because my family is aware of my WRAP, they understand my needs and have learned how to help and support me as this has become very natural in the way we function as a family on a daily basis.
I always have to stay aware of my health, especially if there are any subtle changes or if I quickly go into crisis. My WRAP and Crisis Plan – which was originally created for my emotional health – is now mainly used for my physical health because if I don’t maintain my wellness by taking responsibility to handle what is going on, advocate for the right doctors (even if it means I travel two and half hours to the specialists I need at Johns Hopkins Hospital), continue to educate myself by reading and learning about my illnesses, and support myself with chosen friends/family and online support groups, I might not be alive today.
What is most important for me is that I continue to have hope even if it means another pulmonary embolism, inflamed lungs with pain, frequent trips to the ER or changes to my steroid dose which has caused more physical side effects.
Even after all this awareness, what keeps me strong and well is knowing I have a choice in my actions plans and a crisis plan that all of my doctors are aware of and I insist they all communicate together to ensure I do not have any unexpected problems. Blending together a group of doctors was difficult at first but having this has also helped them as they have become a team to help me stay comfortable and alive.
What I have realized most in all of this is that the psychiatric struggles I had could have been a result of neurological side effects of the autoimmunity illnesses especially Sarcoidosis. Either way, the journey of being traumatized and having experienced over 27 Psychiatric hospitalizations in 5 years led me to being introduced to WRAP. WRAP has helped me handle the way I respond to having lifelong autoimmunity illnesses along with a life threatening clotting disorder.
I have become a living vision of my WRAP that I created myself and I consider my life experiences a blessing in disguise as I have become such a stronger woman because of these experiences. I continue to re-frame many of my struggles that come up and find positive thoughts to handle them everyday. Although I almost died a few times, I am alive, and I will continue to offer hope and Peer Support to others who struggle with their own autoimmune illnesses.
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Linda Meyer founded The Support Place Where HOPE Lives in 2014 to offer others what she couldn’t find in her own struggles of finding HOPE and support from anyone who had similar ‘lived experience’. Linda struggled to find this in her own severe late life trauma crisis and with her struggles with an unknown life threatening physical illness in the early 2000’s.