Saying hello

Blog entry posted by Rowena Ilagan, Oct 9, 2017.

Hello fellow CFS-ers!

Thank you for stopping by at my blog! It's a work in progress, so before I go any further (and give the lay of the land), I wanted to share some background about myself and my journey with ME/CFS.

I'm a 4 year veteran with this illness, with concomitant conditions of fibromyalgia and multiple chemical sensitivities. My integrative M.D. and LAc. believe my illness was triggered by two incidents: #1 antibiotic overuse which paralyzed my immune system (I was constantly coming down with a bug/flu-like conditions nearly every month in 2013) and #2 environmental exposures (possibly from work; I was a scientist before testing employee exposure to occupational hazards such as mold, lead, asbestos, dust, and noise). I went on disability in 2013 and then transitioned to retirement due to medical reasons/disability a little more than a year later.

I have had some improvement in the last year, but still struggle with chronic infections and other symptoms (attributed to chemical exposure and reactivation of EBV, mostly fatigue or malaise and the niggling sore throat). When I pick up a bug, I can be down for weeks or longer, which makes holding down a traditional job difficult. I'm sure many of you who work (even a few hours a week) can attest to this. I started dipping my toe back to the "working world" in the summer 2016, first by doing remote editing (pro bono) of stories submitted by patients to the CFS nonprofit Solve ME/CFS Initiative. Later, I was offered a short term contract position from them, helping with special projects (such as writing a caregiving guide for ME patients) and promoting the organization's work on various social media channels (ME-centered Facebook groups like ME Action, ME/Fibromyalgia is Treatable, and the like).

Since finishing up my remote gig, I have been helping out a bit as a caregiver (mostly for Alzheimer's/dementia patients, although I have taken care of people who have recently had surgery, adjusting to limitations with MS, recovering from a TBI, or struggling with alcohol dependency). I will start training as a co-facilitator on how to manage chronic illness this month. I enjoy taking classes whenever I can; I guess you can call me the forever student! I took a one day a week class on how to be a community counselor and then later a short term course on Alzheimer's and dementia. (Along with caring for a lady with Alzheimer's presently, my mother has also been diagnosed with the condition. I am her back-up support when her live-in caregiver is not available).

I am trying to carve some kind of professional life with CFS, fibro, and MCS in tow, and I'm still finding my way. I was trained in the sciences (chemistry, physics) and have either been working in the lab, doing a bit of research, or teaching for years. With the MCS obviously, chemical exposure is out of the question. I do enjoy helping others, learning, and being creative and for the time being, try to work around the symptoms of this condition while attempting to do the above! I hope to expand on my caregiving work, perhaps by seeking out training in occupational therapy, doing creative projects like documenting the faces of caregiving, advocating for people with invisible disabilities like ourselves, learning new skills such as copywriting, and applying for post grad studies. Before I came down with ME, I had done anthropology research abroad; I miss reading about and doing studies on this subject terribly. I love learning about different belief systems, metaphysical ideas, and ancient healing practices, as it definitely mirrors my journey with ME. (As an offshoot of getting this illness, my intuitive and empathic abilities got amped to the nth degree. I will definitely be talking about these interesting topics in the future!)

Thank you again for taking the time to get acquainted with me. I look forward to us learning and sharing thoughts with each other on our journey with ME and our various interests/passions. Take care all and until the next blog entry!
SueJohnPat, voner and Pen2 like this.
  1. Rowena Ilagan
    Hi @Pen, thank you for sharing your experience! Wow, that can definitely do it, checking on the hay for mold spores! Yikes! Have you noticed a positive difference with your symptoms after not being exposed to mold? I know some people have taken extreme measures with mold avoidance. I must have made over 10 home moves to dodge both mold and chemicals. Rowena P.S. I'm sure it was nice having that time to spend with the horses. I'm an animal lover too. Spending time with them is so healing.
  2. Pen2
    Hi @Rowena llagan, I too was exposed to a lot of mold, and my chest CT showed former fungus infections which I never knew I had. I worked on a horse farm where I had to check the hay for mold by smelling it. Not ever did I think about the affect it could have on me. Oh well right?!
    I still loved my horse days.
    Hope you are having a
    Happy Day,
    Pen
  3. Rowena Ilagan
    I think you might be right ITITJ; the LAc. I consult with thinks that perhaps I was being exposed to mold already before being officially diagnosed with ME/CFS.
  4. IThinkImTurningJapanese
    "My integrative M.D. and LAc. believe my illness was triggered by two incidents: #1 antibiotic overuse which paralyzed my immune system (I was constantly coming down with a bug/flu-like conditions nearly every month in 2013)"

    It sounds like you may have been ill before the antibiotic overuse.
    JaimeS likes this.
  5. Rowena Ilagan
    Hi Perchance Dreamer, thank you for reading my long intro and commenting on the post today! It's good to get acquainted with someone else on this forum with MCS and fibro too. I think for me the chemical sensitivities has been the one of the most difficult to manage. I have had to make several home moves because of it. How about yourself? Has the chemical issue been challenging for you too? To answer your question about LDN, yes my integrative M.D. actually prescribed it to me some time ago and I was taking it for several months. He simply said it can help with autoimmune issues, although I can't really tell what kind of effect it had on me. For pain and sleep, he prescribed CBD oil. I usually see the M.D. and LAc. back to back to make sure I can tolerate what they give me before I start taking anything. For now, I am currently on some herbs (to mitigate my reacting to chemical exposures whenever I go to an assisted living facility) and also Mg the old stand-by (suggested by a naturapath). Thank you again for your comments and suggestions!
  6. perchance dreamer
    Hi, Rowena. What an interesting background you have!

    I have fibro and chemical sensitivities, too. It's tricky sometimes when you have several conditions that can cause overlapping symptoms.

    Have you ever considered LDN? I've asked my doctor's office to prescribe it for me. It seems to help a number of people with immunity, pain, and sleep. However, it seems to have a powerful effect on the body, so you have to figure the ideal dosage and also whether to take it in the morning or at night.

    Good luck!
    Rowena Ilagan likes this.