“The soldiers are drinking, smoking, partying, and up to shenanigans.”

The title is Dr. Elizabeth Seymour’s description of my compliment immune system. It made me giggle LOL! Unfortunately, Mast Cell Activation Disorder (MCAD) is confirmed a second time. I was hopeful they would tell me I did not have it and there was some other problem that had a simple solution.

It has been a challenging three weeks in Texas. Some additional issues have been unmasked during my time here, and of course, they are weirder and complex. Why should weird and complex change now?!?! LOL!

I forgot how reactive I was in the past, but the last three weeks have been a reminder. I had to be off my prior regimen for testing, but the difference this time is I now have a “rescue” plan in place that is safer. I was wondering what I would do if I ever had anaphylaxis again because since the dysautonomia developed Epi pen use was a scary intervention with a likely arrythmia.

The first week of testing was the most challenging with many, many, reactions and “rescues.” The rescuing continued during my time here, but staff changed how many tests we would get through in a day. A mixture of rescue antigens individually dosed, tri-salts, buffered vitamin C, and oxygen brought me back many times during the past three weeks and I am grateful to have this new plan. The information obtained during the last three weeks is priceless.

Remember the meme I posted on one of my previous entries? If not, it is part of this blog entry because it is now true, I am truly reactive to the universe-it used to be a lighthearted joke! LOL! The test results explained why it has been so hard for me to fully rejoin society and why I have so many problems for days afterward when I try. I am highly reactive to many things including perfume and laundry products, and all VOC’s commonly found in office buildings. I learned about all the terrible things in perfume, and this is also a plea to the public to stop increasing your toxic cup and mine.

Acceptance can be a complex and challenging journey. I am not the first woman with breast implant illness to develop MCAD, and I will not be the last. At the specialty clinic, they have seen this since the breast implants of the 80’s. I asked the top breast surgeon the right questions when I decided to undergo breast reconstruction including questioning the very small print that I could barely see about implant autoimmune issues. She said she had not seen it in her 20-to-25-year career. “Look the silicone cannot travel.” Too bad she did not know or did not believe that the shell of the implant sloughed off after implantation. She still performs breast augmentation with breast implants. This signifies to me she still does not believe they can cause harm. There was no updated research at the time to compare the implants of the 80’s to the implants of 2011. I found myself revisiting feelings of anger at breast implant manufactures during my time here, but I do not want to live in an angry, resentful place, so I let those feelings go quickly.

While I look forward with positivity, like I always do, I also revisited feelings of sadness. I wish I had known then, what I know now. I wish I had found the Facebook support groups that helped me piece together what was wrong with me, back when I was making the decision about breast reconstruction. I wish I was one of the quick healers, and I wish the consequences of my decision to undergo reconstruction did not result in MCAD. I wish those who love me and are closest to me did not have to see me struggling and must change their lives to keep me safe. I wish we did not live in such a toxic world where manufacturers are allowed to do whatever they want with very little consequence, if any consequence. The earth, animals, and lives are being impacted severely. I worry how a toxic world will impact my daughter and stepchildren, who are young and impressionable and believe if the product indicates it is safe, it is. Kids are developing immune system issues and cancer at an alarming rate. It was rare, 40 years ago.

While I revisited some negative feelings the last three weeks, it was just real and honest. I choose not to let my mind live in a negative space. It is important to me to practice gratitude daily as part of healing. I want to thank Dr. Seymour and her amazing staff for taking the time to educate me, “rescue” me, and for not being surprised by anything I told you. I am grateful to the alternative providers who have helped me along my healing journey. A huge thanks to Dr. Doyle and her staff in MN for also believing everything I reported, even when it did not make sense. You were the one that figured out what was wrong with me. Thank you for not making me feel like I was nuts, like some other providers have. Dr. Doyle and her staff have always advocated for my best interests and tried to help me achieve better baselines. I am grateful for Melissa at Healing Within, who is my hydrocolon therapist, for the many chats and expertise. I am grateful my daughter still loves me, and encourages me to keep fighting, even though there were times I had no energy and was too ill to be the mom I wanted to be. When I regain my energy, I will join the alliance to to fight for a safer world for my daughter and my future grandchildren. I have tremendous respect for my wonderful husband, who stood by me through all of it. My health issues started eight months after we met. We have been together nine years. He stood by me, researched for me when I was too exhausted and cognitively impaired, he found the breast implant support groups for me to read the warriors stories and piece together what was happening to me. For seven years he drove to me, sometimes up to 1.5 hours, to see me even if I only had an hour or so to see him. We have only been married for two years and “for better or worse, in sickness and health” has been challenged many times. He has wiped my tears and celebrated my gains, supported medical leave, and now a job loss due to my employer no longer wishing to medically accommodate me. He encouraged me to re-launch my business. He knows how much I love working with others to support their healing journeys-my clients inspire me and bring me joy. I am thankful for my family, who support and love me. My aunts are like my sisters, especially my aunt Penny who listened when I cried and was frustrated and experienced loss. There are not enough words to express my gratitude, respect, and love for all who have supported me on this journey. I am grateful for new friends and old, who I know are there if I need them.

My journey to remission will not be achieved in three more months, I know that now, and I accept it. It realistically will be at least another year, but I will be in a much better place in three to six months. It might be a while before my next blog entry as I am focused on healing, growing my business, and finding additional employment opportunities if an employer will accommodate my needs. I have something to give, and I am not broken.

I close this entry with hope and peace. I am tired, but ready to battle soldiers-you WILL stop drinking, smoking, partying, and participating in shenanigans in my body because my will and desire to heal is stronger and I have an army who will help get you back in line! My healing story is not over yet…

Howdy from Texas!/Travel Tools

Hello All! I took a flight to Texas, and I arrived alive (obviously) LOL!!

There definitely were challenges along the way starting at the airport. The moment I stepped out of the car, perfume everywhere and I was still outside. After sitting in the airport for a while, my white, bright sclera started to change into allergic red and I got a headache, my right eyelid swelled, and was itching a little. I premedicated prior to leaving my home, but ended up taking more antihistamine while sitting in the airport. I was extremely nervous the night before and I was awake since 2 am. I have not traveled in years due to Mast Cell Activation Syndrome (MCAS), my hair was still brown the last time I traveled (now gray). I spent most of my night meditating and neural retraining exercises to calm my mind down because my body was becoming reactive from worrying so much, it worked and my body calmed down.

Thankfully, the environmentally-safe condos where I was staying has an agreement with a local transport provider for pick up to and from the airport that is safe as well. When I arrived at the condo, I was pleasantly surprised at all the precautions and mindfulness that went into making a safe space for people like us (thank you Susie). There are short term and long term residents at the condo, and everyone I met was so kind. I got to know one of the long term residents while sheltering during a tornado warning. The start of my stay started off with tornado sirens! Memorable! Those from TX were not worried at all. I was a little challenged from the exposures during travel, but nothing worsened while in my condominium; I feel very safe here. The feeling of safety is Priceless.

Friday-I had to stop significant components of my protocol in preparation for Monday. I still looked and felt impacted and by early afternoon the rashes were starting to emerge. I am soooo sooo foggy, but my night was brightened by seeing one of my clients. :) I used my additional tools to get through. I had a challenging night sleeping as I was not feeling well during the night. I am 99% sure it is from stopping some meds and supplements, but I ordered a Covid-19 test since I was traveling. The owner is so sweet and she provides all transportation, I would feel awful if I had Covid-19 and she got it. Thankful all the delivery services exist now so I did not have to go out in public, but many things arrive fragrant, which is maddening. Covid-19 test was negative. I will take another one on Monday before I leave for the clinic. One Texan I met said they do not worry about Covid-19 or masks here.

I brought the following tools to help me while traveling: Calendula lotion & Camilla oil for rashes and burning skin, extra antihistamines (H1&H2’s, but have to be off while testing), respiratory oils (cannot use in condo), masks, personal ozone device and plug in, castor oil packs (continue detox and liver support), foot detox pads, glucose tabs (for reactive hypoglycemia, just in case), blood pressure machine to monitor dysautonomia, which often flares when I am reactive, and spirulina and chlorella, and other binders. I am also equip with my Peloton app for daily yoga and meditation, and I perform my neural retraining exercises daily.

By Saturday afternoon, I am starting to see hints of clearing in my eyes. The other part of my sclera has a blue tint again. For me, I am pretty sure the blue tint comes from metals getting stuck because it clears when I am on my normal detox regimen including colonics. It often correlates when I feel “bogged down” with toxins. Blue sclera can also be caused from a collagen disorder, iron deficiency and other conditions. I will share more as I progress on this journey. Thank you for your support and kind words, some of you have reached out and I greatly appreciate it. This journey can feel lonely even when you are right next to someone.

You are allowed to be both a masterpiece and a work in progress...

Hello All!

I hope you are well.

About five weeks ago, I changed my detox strategy and it is working! My eyes were brighter, my muscles and joints hurt less, less rashes, improved cognition, and more energy. Heavy metals are detoxing! I am grateful for progress!! Unfortunately, within progress, there were some additional challenges discovered in my home. I am currently at a family members home while my home is being remediated for the third time. Sigh…while at my family member’s, there are not zero allergens (mostly due to her neighbors apartments), but I made a discovery while being away from home again. I discovered another contributor in my home environment without an easy and cheap solution. Knowledge is power, but come on, enough already!!! LOL! I am grateful for the full nights of sleep free of nerve pain and itching while I am here, but the bright eyes are fading.

Due to a staff member at a clinic wearing too much perfume, I nearly had anaphylaxis a couple days ago (this would have broken my record of one-year anaphylaxis free) and could not complete some testing. This flared dysautonomia symptoms as well, so back to very minimal activity, monitoring blood pressure and heart rate while my body calms down. I will try again next week with precautions in place (I spoke to clinic). I just hope I will not have to start betablockers again as I gained 25# last time I had to take them.

Fortunately, following up on a referral, I found a clinic in Texas that specializes in mast cell (histamine issues) and breast implant illness. I will visit them in March for two weeks for treatment (do not worry, I made myself available every evening and weekends for my clients while I am there so I can still work). I am hopeful what I learn during my time there will continue forward progress. Everything I learn about my body helps me to help others. I choose to embrace the challenges as more learning, but the guilt of how this condition impacts others is still hard to let go.

Guilt is a challenge. We hired an environmental expert, who has been so helpful. The consultation was not that costly, but the recommendations are. He found a gas leak-fixed, our sub pump stopped working and was growing algae and/or mold-replaced, and we installed a radon system. The list is so long on the improvements we still need to make, then we found mold in the laundry room, which is outside my bedroom. It was a slow leak present for some time due to poor professional installation (at least this is my understanding). Tests are pending on what type of mold. I already have mold issues in my body, I do not need more. So much money going out the door right after losing my fulltime job. My husband has been supportive, but this is so hard on him too. The guilt resurfaces, I am having trouble letting it go. I deserve to heal and live in an environment that is healthy for my body, but there is no easy way or cheap way to get there. My husband deserves his wife back fully. I am sure many of you can relate. I must guard against letting the guilt consume me, definitely testing “for better or worse, and in sickness and health.” He has been dealing with the sickness part since about seven months after we met, but it was truly love at first sight, so I keep fighting and he keeps supporting. We have to intentionally make time for us that does not involve problem-solving. We are so in love and we both hold on to what we thought it would be like when we finally lived in the same house. There are glimpses of that projection, but we are both grieving a bit as reality gets in the way.

Another three months...

Hello Everyone!

Checking in to provide an update as I start my next chapter in the journey to achieve remission. Unfortunately, five months ago I experienced a set back that pushed mast cell activation syndrome (MCAS) to another level to include dysautonomia. For the last five months, my activity has been severely limited and I am dealing with new challenges as a result of the dysautonomia, but I keep working to adapt and continue pushing forward to achieve the goal of remission. I definitely have a new understanding of what some of my patients went through with spinal cord injuries as I manage some of the same issues, but differently related to the autonomic nervous system. My functional medicine physician also ordered some specialized toxicity testing that was sent to Germany for analysis; the results are helping with some targeted detoxing efforts. As disturbing as the results were to me, it has been useful with planning the next chapter of healing/detox (detoxing has always been tough for me).

Since my last blog entry, I lost my fulltime job as my employer no longer wanted to medically accommodate me…more loss, but I am looking forward. My self-employment is showing potential for growth and I am grateful for this, but this can take time. Meanwhile, I continue to look for another job with benefits that will accommodate me.

I am exploring my treatment options for the next chapter as I am still focused on getting MCAS into remission. This may require out of state treatment for a period of time. Following up on a referral, I found a clinic that has been treating breast implant illness and histamine issues since the 80’s; I am confident they can help me and I am grateful for the collaboration/coordination of my local providers.

My next entry may or may not be from a warmer, sunnier place…stay tuned.