Tag: recovery

breath control

For the first time since my surgery for Chiari malformation on Monday, I actually slept through the night last night, which felt amazing. Here in the US, we also ended Daily Saving Time last night, so, even though it looked like I was up early, I had to add an hour to account for the clock change.

I do still owe you a surgery post but, right now, I wanted to share what has already improved since my surgery.

By the time I left the hospital on Wednesday, my balance was much improved, so that I could reliably walk without having someone nearby to help steady me if I got light-headed. I could also walk in a straight line, if that was what I intended. Balance problems have been a constant for over two years now, so having it already improve so much feels like a miracle.

The other thing that I noticed while still in the hospital is that the blurring in my left eye is much better. I can see for long stretches without any blurring but can still have trouble when I’m most tired.

The exciting thing this morning was that it seems that my breath control is improving, too. I was participating in All Saints’ Day mass via a recording and was happy that I could sustain the phrases in the opening hymn, “For All the Saints.” It’s been frustrating to have to breathe way more often than a singer should need to – and there is certainly much room for further improvement – but to have a noticeable improvement already feels great.

All these things are most likely due to the restored cerebrospinal fluid flow. I had a lot of testing to rule out physical problems with my eye, inner ear, lungs, etc., so we knew there was not a problem with the organs themselves. Rather, there was a problem with them getting proper signals from my brain.

Improved breathing is particularly important for me. I had been getting out of breath easily, for example, from walking up a flight of stairs or from lying on my stomach. It seemed that it was likely due to dysautonomia, which is common in people with hEDS and/or Chiari malformation. One of the fun features of my surgery had been difficulty keeping me breathing because I needed to be prone so Dr. Klinge could access the back of my head and neck, but they had modify the body position they usually use because I would unceremoniously stop breathing, even though I was intubated.

Obviously, we are still in early days of a recovery that is expected to last 3-6+ months, but I’m stunned at how much has improved already. I have to remind myself that symptoms that haven’t changed at all yet may well improve over these coming months, just more gradually as my brain heals after 2 1/2 years of not enough cerbrospinal fluid circulation.

I am so grateful to Dr. Klinge and her whole team; to Lauren Eadline, my wonderful NP who specializes in patients with hard-to-diagnose-and-treat disorders; and to all my family, friends, and readers who have been so supportive throughout all of this and continue to uphold me.

Onward (but with still a lot of rest breaks)!

One-Liner Wednesday: down day

After singing a gig with Madrigal Choir at a senior living complex last night, today is going to be a down day to recover to be ready for a big out-of-town medical appointment tomorrow and another gig on Friday.

Please join us for Linda’s One-Liner Wednesdays! Find out more here: https://lindaghill.com/2026/03/25/one-liner-wednesday-are-they/

Harvey

I join with the millions of people in the US and around the world in sending thoughts, prayers, and charitable donations to those affected by tropical system Harvey. The amount of damage from the winds and historic amount of rainfall is mind-boggling. Recovery will take years and some locations will not recover at all.

When my area suffered two record floods of the Susquehanna River, I learned a lot of lessons that, while our geographic and demographic situations differ, applies to Texas and Louisiana now:
– There is no way to adequately prepare for a flood of that magnitude. No amount of prepositioning of supplies and personnel could cover such a vast area with so much destruction over some many days. Yes, lessons can be learned for the future, but don’t waste time now casting aspersions. There is too much work to do.
– Accept help! I volunteered in a flood relief center in my town after the 2011 flood. We sometimes had problems getting people to accept the food, cleaning supplies, and other help we had available. They wanted to forgo it in order to leave it for someone worse off than they. We had to gently explain that everything had been donated to help those affected by the flood and that that included them; there was plenty to go around. On a larger scale, this goes to the question of whether the states accept help from other states and countries. They should graciously accept offers to help, in the same spirit in which they have offered help in past disasters. Obviously, there needs to be coordination so that donations mesh well. I know that the New York governor has offered the services of our Air National Guard because the need is so great and Texas has already mobilized all its available forces.
– Don’t argue about whether it is a 500-year flood or a 1000-year flood. Those probabilities were based on historic records that no longer apply due to climate changes. My area suffered two record floods in five years. Areas flooded that had never flooded before. A number of lots that had had homes on them have now been bought out and converted to green space because the flooding threat is too high to have people continue to live there. If you are going to rebuild in flood-prone areas, you have to be smart and elevate homes, build protective wetlands, and minimize impermeable surfaces. Which brings me to my last point…

– Accept the science about how storm strength and mobility are affected by global warming. Michael Mann helps to explain the factors that made Harvey so destructive. (More information and links can be found here.) Yes, there have always been category 4 hurricanes, but the warmer surface temperatures of the Gulf of Mexico and the higher sea level made the rainfall and storm surge higher than they would have been in years past. The lack of steering currents kept the storm spinning in the same area, dropping over three feet (one meter) of rain over a large area. This same mechanism had a hand in the first record flood here in 2006, which was caused by a stationary front, as was a flood a few years ago in the Boulder, Colorado area.

Part of what we all need to do going forward is pay attention to preparing for increasingly severe weather. We need to think about resiliency in our building, zoning, and planning. We need to look at restoring natural aids, like barrier islands, dunes, and wetlands. We can place offshore wind turbines strategically to help blunt high winds. We can move away from fossil fuels as quickly as possible so that warming does not cross over into the catastrophic category. We can’t afford wishful thinking about the latest severe storm being once-in-a-lifetime. We need to work together to help each other recover and prepare for the future.

 

Anyone?

[sidles in, switches on the lights, and looks around]
Hello? Anyone still here?

Oh, good! A few of you are still checking in! My apologies for the dearth of posts lately, with just a scattering here and there.

Life has been busy and I wanted to do updates. The most important is regarding my mom, known here as Nana. She spent several days in the hospital last month with pneumonia/congestive heart failure and was sent home to the apartment she shares with my dad, Paco. She was very fatigued and weak, so we have enlisted help. She now has home care coming in several times a week for monitoring and physical therapy. There have been doctor visits, a new medication regimen, and some more tests ordered.

It’s great to have home care in, because it means having a nurse case-manager to oversee and co-ordinate the various health-care providers involved and to serve as the one-phone-call resource for questions and problems. This is especially important for us this week, as B and I leave tomorrow to visit daughter T in Missouri. It brings peace of mind to know that the home care team and the staff at their retirement community are both on duty to watch out for Nana and Paco while we are gone.

I’m hoping that I will have time while we are gone to do some catch-up posts. Music, poetry, travel, and transportation will be likely topics.

Stay tuned.