I am so relieved that it is 2017!  I am happy to say that I am feeling my usual self today. But it was hard work getting back to emotional and physical status quo — because the last four months of 2016 was absolute shit!

This blog post is about how the emotional stress of a major life event collided with my Sjögrens, caused a major Autoimmune Disease relapse, and what tools I used to pull myself back up to my usual state of normal. I also, now, have a game plan for the next major life event!

It has been exactly four months since my Father’s funeral. He was a diabetic on dialysis and we had watched his health decline rapidly during the year. When he entered the hospital for (another) infection, it was not a total surprise that he decided to reject dialysis. He simply said, “I’m done”. And we believed him. We supported his wishes and 10 days later he was gone. We had an amazing family experience (Dad, Mom, me and my brother) as we stood vigil at his bedside sharing stories and love. It was a very good death, and I am thankful for this.

Major life stresses, like death, happen. No one can prepare you for how you might react, so you need to trust that you know yourself best (and you know what will help you most). Managing my Sjögrens while going through all of this was a challenge, and ultimately not wholly successful, but I was able to keep myself together to get the critical things done. I wanted to give myself the best chance of being present for my Dad, my Mom and brother, and to be able to be an active participant in the work that happens after death (the funeral, the house, the family grief, the mourning friends).

Grief and Autoimmune Disease: Drug and Self-care Regimen

I thought preparation would help me avoid a relapse. To prepare I:

  • Built a complete eye, nose, mouth care program at my parent’s house to stay on top of dryness. I tried to keep a strict schedule of care.
  • Brought fish oil, probiotics, vitamin C, Miralax and kept a regimen.
  • Increased my Plaquenil from 400mg/day to 600mg/day.
  • Increased my Vitamin D3 from 5,000IU/day to 10,000.
  • Got a massage twice when in Seattle to help with muscle pain.
  • Got in hot tub at my parents’ house in evenings to relax.
  • Had a back-up Rx for prednisone should I need it.
  • Asked friends for help (such as rides to the airport).
  • Rested in the afternoons, even when I didn’t really want to.

From August 15-October 21st I was able to:

  • Travel between San Francisco (where I live) and Seattle (where my parents live) three times. Staying long periods of time.
  • Be with my Father and family.
  • Help plan the funeral and transition personal records from my Father’s name to my Mother.
  • Kept important work afloat. (Thankfully, my work team was very understanding and supported me).
  • Care for my injured dog when I was home (a longer story).
  • Go to a Sjögrens 2-day meeting in NJ that was important to me.

I believe my regimen did help me accomplish the critical items during an emotionally difficult time, but then I must have been in denial about how I was really feeling. That last trip to NJ was simply UNWISE.

Was I being stubborn or in denial? Well, it is my personality to be a bit of both, but I often wonder where that line is…that line that I sometimes think I can push beyond without harm. But when in crisis, I have learned that it is NOT the time to test my boundaries!

From October 22nd-November 15th I was in a full blown relapse.  At first, I thought I had the flu since I had a fever over 100 for 10 days and could not move. (My relapse fevers have never gone over 100.) I talked with my Rheumy and she suggested I see my PCP and sent a battery of tests to add to any labs he wanted to run. We ran everything. My PCP stated the flu had not hit town, yet, and that he suspected a relapse.

While I waited for lab results, I pulled out my Stages of Autoimmune Grief & Life, knowing I had some work to do. I certainly had to look at denial pretty heavily. (If you have read my blog before, or seen me speak, you know I often need to confront denial.) Because I was in a full relapse, I also had to consider if my depression was situational or if it was teetering on clinical and I should ask for medical help. As I worked on assessing the stage of grief and the level of relapse I was in, I was able to create a program that helped me get my feet back on the ground and by December I was feeling much better. This took a lot of sleep and self-care at the relapse level! I also had to ask for more help from friends (dog walking, a grocery run) and I decided not to care about a dirty house. I quickly went from denial, to depression, and then rested on resignation (three stages of my Autoimmune Grief Stages).

I was able to go back to Seattle and spend Thanksgiving with Mom and my brother’s family — our first holiday without Dad. On my return home, I continued resting in December and performed the required amount of work to keep everything in working order. I was thankful that I moved through depression and did not need to consider medication. I knew I was on my way out of the relapse when I started to get very bored with  all of the rest…but I knew I had more time to spend in recovery-mode.

Now that I am rested, and sitting squarely in a mode of acceptance, I recognize where my boundaries are and I am beginning to feel the stirrings of motivation. I know that there is more grief work with my Mom and brother, the kind that only time can address, but I am glad to be through the crisis part of it. I am planning my next trip to Seattle soon ( I stayed home for Christmas) and I will be taking these lessons with me.

Tips: When Grief and Autoimmune Disease Collide

Major life stresses happen and they are (even more) challenging for people with systemic and chronic illnesses. In fact, very happy life events (weddings, births, new jobs) can also tax us. I now know that I can handle a lot when I’m prepared and I hope I have learned that adding more activities on top of the critical events is just NOT a good idea. In fact, it appears that my relapses might happen anywhere from 1-3 weeks AFTER the major stressors have ended (which is a good new lesson).

So next time I have a major stress event, I am going to follow a different plan:

  • Be prepared.
  • Know my critical items required (and make that list pretty small)
  • Work my plan to achieve fulfilling the critical items (even when they are over a long period of time).
  • Assess where I am in my Grief Stage and Energy level often.
  • Do NOT add anything just because a relapse has not (yet) occurred!
  • Eat healthy (I ate comfort food and a lot of carbs which did not help me feel better. Next time I will know that the trade-off is not worth it).
  • Rest well for a couple of weeks before engaging in new items to see if any relapse symptoms arise.

I’d like to think, in difficult situations, that we can do better than we hope…but I also think it is wise to accept that to simply cope and be present is success.

If you have Sjögrens, Lupus, RA or another chronic illness and you have some tips on how you’ve handled a major grief event, please do share!

Now about my labs. Good news is they were no worse than last year at this time (when I felt OK). Bad news is they were already looking pretty bad. So in December I had my first two rounds of Rituxan. I thought I’d write about that as the drug benefits unfold! I seem to be one of those odd people that functions better than what my labs say…and you know what… I am thankful for that!

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