Last year on the Summer Solstice, we shared our story publicly about José’s diagnosis. This year we’re battling a new beast: Covid.
We’ve been extremely careful over the past two years and even managed to travel extensively to and from the mainland—seven trips in seven months!—to participate in the Healey ALS Platform Trial and visit with family without getting sick.
Unfortunately, after a couple of recent events and time with family, I spiked a fever this past weekend.
At first, it was just a low-grade fever, body aches, fatigue, and an occasional dry cough. It soon progressed to high fevers at night (103), severe body aches, headache, chills, congestion, painful sore throat, weakness and fatigue. On Monday, I tested positive for Covid using a rapid antigen test.
While it’s one of the worst viruses I’ve ever experienced, it has yet to escalate to point that is unmanageable from home. We remain hopeful that I may be on the mend later this week if I follow the pattern of many people hit by the Omicron (vs. Delta) variant.
The challenge of course is that I can’t simply self-isolate to protect José. I’m his primary caregiver. On a typical day, while he’s at home I assist him with:
- getting out of bed
- transferring between furniture and his wheelchair
- getting in / out of the shower
- washing his hair
- getting dressed
- prepping and serving meals
- dispensing medication
- opening the front door when he needs to leave (or returns home)
- charging his wheelchairs
This is physically (and mentally, emotionally) demanding for a healthy person who also works full-time as self-employed business owner. Caregiving with Covid added into the mix is no joke. As soon as I realized I had a fever on Saturday, I self-isolated in one room of our apartment and only stepped out—after double-masking and washing my hands (or when in close contact, wearing an N95 mask)—to help José with anything he needed.
Under any other circumstances, we would gladly invite friends and family into our home to help. Unfortunately, José tested positive this morning, too, so we won’t risk exposing anyone else. Fortunately, he has mild symptoms thus far.
We alerted both his PCP and his neurologist as soon as he developed early signs, and are communicating with them daily. Because of this, they had already been able to do the legwork to check for any drug interactions with his current medications and were standing by for today’s test results. We were able to speak with his physician, who was able to prescribe Paxlovid (an anti-viral for Covid) which he’ll start taking tonight.
Between the quick access to the antiviral and staying current with vaccinations, including a second Covid booster in April, we’re hopeful this affords him some extra protection and a swift recovery.
Sidenote: I have some choice words for the folks who decided that caregivers should not be eligible for additional Covid boosters. What is the logic in not protecting the people who live with and take care of folks who ARE eligible and medically vulnerable?
We share all of this not to scare anyone, but to keep you informed. Updates on the blog have been less consistent since José’s participation in the Healey trial ended so we’re trying to shift to more frequent, everyday updates sharing our experience living with ALS. As always, we’re glad you’re here and promise to keep in touch (hopefully with happier updates!) very soon 🙂
Connie B Williamson
Sorry to hear y’all both have Covid. Praying hard for both of you. Those are simple and often written words but believe me; they are meant wholeheartedly! God feels and knows our love for you both!
Ray and Pat Cruz
You both are in our thoughts prayers. Have been for a long time. Get well soon. Abrazos. The Cruz Ohana.
Echoing “ABRAZOS”; holding you both high in mind….john & gonzalo
You BOTH continue to be in our prayers…I too clearly am baffled by some of the guidelines with COVID ….
Oh Jen! I’m so sorry you came down with it! That you both managed to avoid catching COVID over the last two years is a testament to your diligence! I hope the symptoms pass quickly and don’t hit you both too hard. Sending big hugs and well wishes for speedy recovery.
Anything you need, I’m available. I’m quad-vaxed & respect the virus by protecting myself with the precision of a burn care nurse.
When I was giving vaxes at Blaisdell (Queen’s) we initially vaxed caregivers. Then there was a supply shortage from the CDC & we were ordered to turn caregivers away, which was a moral conflict, but out of the nurses’ hands. Eventually the supply increased to the point of glut & wasted doses, and caregivers were again welcome. I don’t know if it changed again or what other providers were doing.
Both of you get well soon. 🙏🏼
Sending over the healing energy that abounds on Maui. My thoughts are with you. Wondering /hoping you can get some additional support during this difficult time. Mahalo for sharing and carrying on with such courage!
Sending you healing vibes from Maui! So sorry you’re both dealing with this – hoping for a swift recovery for you both!
Sending love and praying for a quick recovery!
Sending special prayers and love 💕 to both of you!!!
Sorry to hear you caught Covid despite your efforts. I hope you both have speedy recoveries. Prayers will continue for you both.
Get better soon you two! Also, the last pic is super cute, you should be jazzed to share it lol. Love you both!
Thinking about BOTH of you…and sending positive thoughts from….Anchorage. I’m visiting the cutest granddaughter in Alaska, and her parents. Daughter Susan got painful COVID (was it last fall?), despite full vaccinations at the time. Lost her sense of taste & small. But OK now.
Seriously, though…COVID is a hideous experience, and it’s terrible for you two to have to cope with it on top of all your other chores.
But I firmly believe you both will kick COVID out the door!