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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!
Hi Janet, I’m sorry about your dad. I also had a crappy last four months to 2016 as one of my best friends died from cancer and I was traveling to RI, from Mass, to spend time with him and help care for him.
I cannot adequately put into words how difficult this was and the huge impact it had on my Sjogrens… which is why I have yet to write about it on my blog. He died 2 months ago and I am still having physical struggles.
Thank you for sharing your experience.
I am sorry for your loss Christine! This is a process that is difficult for everyone…but it does seem to hit us extra hard. I hope you have a quick recovery back to your own “normal”!
Janet,
Your blog posts are so insightful. They capture so much of what I feel. My biggest struggle is with the phase you call denial. I try to continue to operate at warp speed and about every 5 to 6 months Sjogrens fights back. However, with a very busy professional career and being a mom to two boys, it is sometimes hard to prioritize the rest and recovery time. It is nice to see how you have come up with ways to try balance a rewarding professional and personal life with the condition. The thing I notice for me is that while I am in the various stressful situations that I don’t flare. It is actually when I finally have down time, such as going on vacation, that the flare triggers. I guess the mind does really play a part in it all. Keep blogging! Thank you.
First, thank you for your condolences. Second, I agree with you that the mind is so powerful! I have the same pattern of being able to get through so much and think that I’m OK because I haven’t crashed…only to crash when I take a break and my body receives the signal “It’s OK to break-down now”. This last life event did not even wait for that. So be sure to take care of yourself, which is easier said than done (especially with two kids and a career)! I will be writing more on denial soon…it tends to be my nemesis as well.
Also I am so sorry about the loss of your Dad. It was so wonderful that you could be there for him in the way you described.
I am sorry to hear your lost. May God give you patience to carry on
Thanks for this post. It is so helpful for people like myself who suffers from Rheumatoid arthritis.
The way you have detailed it how to be prepared is amazing.
I also find it very helpful how you have written about the days you were at your parents.
I think this post will benefit loads of people who go through grief.
Thank you for sharing. I haven’t seen your blog before.
What struck accord with me is “denial ”
I been diagnosed with SS since 2003. When you’re not being overwhelmed by disease it’s easy to forget the dark days. However we need remember to have a plan in place. Because once a relapse hits you might not remember it.
You have remind me to get my plan ready.
Take good care of yourself Anita!
My deepest condolences on the loss of your Father. Your mother is a very blessed woman to have you as a daughter-to help her with everything difficult that needed to be done. I’m wondering what kind of lab tests your doctor ordered for you?
I had a large number of labs run for several conditions for which my Rheumy and my Internist were concerned. Too many to list, but it may be an interesting blog post in the future. Thanks for the suggestion.
This is the first time I have read your blog, and I liked it so I signed up and look forward to reading more. This blog made me feel vindicated. My husband had a major health scare Mid September involving flight for life and the whole shebang. He was hospitalized an hour away. I am a one person office, and at that point the only wage earner, so I did lots of commuting. I would have killed for some Prednisone. In January I asked my Rheumatologist for a prescription for Prednisone to have on hand he acted like I was crazy and in fact pretty much told me no. But at the end of the appointment without saying another word he added the prescription. I had been thinking I was asking for something I shouldn’t have until I read this blog! Thanks so much for sharing your Sjogren’s life!
One of the most important relationships I have is with my Rheumy! I think she is exceptional…how she listens to my needs and has learned to know my personal strengths and weaknesses. It is not every Dr. that fulfills a request (such as having Prednisone on hand) but I’m glad you asked and are prepared for the next potential “crisis”. Prednisone is not the back-up plan for everyone, but it has been helpful to me. Good for you, Vickie, for asking for what you feel you need…and thank you for sharing your comments!
I am a reluctantly retired nurse who lost my Mom about 6 months ago due to Alzheimer’s Disease. I flew back to CA to take care of her at home for the last weeks of her life. It was the toughest thing I ever did. She also had dementia and was combative. I would do it again but you do need someone to give you an hour or two break so you can stay the distance
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I also have Sjogren’s Disease, peripheral and cranial neuropathjy, RA, Fibromyalgia, and a couple of other things
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I am glad that I had that time with my Mom.
Thanks for sharing Susan. It is difficult to go through the loss of a parent and is made extra challenging with Autoimmune issues. I hope you have a good support system and have been taking care of yourself since the loss of your Mom. All my best to you and my deepest condolences.
Janet, great post! I just happily discovered your blog through Reasonably Well.
My condolences on the loss of your father. I empathize with you; I lost my mom August of 2016. Unfortunately, I did not take care of myself as I should have as my mom’s terminal illness took a fast turn to hospice care and end of life. I’m so happy that I was able to care for her in her home and be with her as she passed; incredibly sad yet beautiful. It wasn’t until after the memorial, after all the activity slowed down that my disease became an inferno. My sjögrens, et al is still out of control due to many reasons.
I love your post on the stages of grief. I would love to see you do a post on guilt. Guilt is something I’m continually struggling with as a wife, mom of three, daughter, sister and friend.
Be well and thanks so much for sharing.
Rhonda, thank yo so much for your comments….and my condolences on your Mom’s passing. I’m glad that you also felt the beauty in her passing (as I did with my Father). I think and post on guilt is a fantastic idea. I can have some guilt myself, and I don’t have children to add to that. I may call upon you for a discussion about your feelings of guilt to add additional perspective to my own thoughts! Take care!
The best way to combat grief is to be an over achiever in the special things that make mr happy. I have st least 10 happy places to visit daily. My 3 websites, book (full of short stories ) and my fashion line leave very little room for noticable setbacks. Every now and then I can feel myself slipping health wise but I dive into my work
After loosing my dad, mom, two sisters and one brother, keeping busy with my designs truly gives me strength.