One of the hardest things to do when a person is very sick or in sorrow is to leave home: our nest, our refuge...safety. When our local ER doc said, you need to go to a big city with a lot more resources than we have, we realized, we needed to move and move fast if we stood a chance of saving my life. I was rapidly losing my ability to tolerate any food I ate without setting off a hyper allergic reaction. We had to go somewhere else, or not.
At one point in June we had a long talk about what the next months might hold for us. Physically moving until we found the right doctor or doctors; dealing with being very ill and intolerant of food while trying to negotiate driving, living in strange places and going to ERs; daily stress for my DH and just incredibly awful suffering for me; and, oh the money. It was going to be at best a slog, with no guarantees. I asked if I could let go. DH said no. So we held on, literally at times for hours with me hanging on to his hand and watching his face to get through ten seconds, a minute, half an hour, a day.
With the intervention of a head nurse known to a friend, the ER doc in our community hospital started treating me as real and not a head case. At her urging he gave me IV Salumedrol, a steroid injection which bought me time to get to Seattle.
By now the Kossack network was in full swing, and we were on the run, trying to survive.
Little did we know it would be the last time we would consider the Kit House our home, a place to live, our own nest and palette of our lives.
One thing we have learned over the last fifteen or so years, some health care providers will do whatever is necessary and actually make their observations and conclusions seem logical and straightforward. Others, far too many, will observe a storm in a person’s body, look at the pieces and conclude the problems are separable, complex, unidentifiable and too much. The patient is sent away with nothing done. Another rather large component adhere to what an infectious disease doctor at Oregon Health and Sciences University (OHSU) told us is axiomatic: “if it’s not the doctor; if it’s not in the books; it’s the patient.” This translates to psychiatric and self induced somatic illness diagnosis. The patient is sent away with nothing done.
We had to be our own advocates, learn what we could and actively search for answers.
The challenge if we accepted the fight to live, was to find the doctors who would look at the entire picture and determine a cause and solution. We stood a better chance in Seattle where there are several competing medical centers and schools than in Oregon where one medical school calls the shots for the entire state as far as standard of practice and approach to illness.
So began our search. A five hour drive to Seattle, with a two night reservation in a hotel as close to the center of town as we could find. Move one. Seattle was booked up the last week in July. Any hour could mean a need to be in ER where at least we would get life saving measures. By now I was close to only tolerating water to prevent extended reactive episodes. My Rescue Ranger editor, vcmvo2, put us on the right path about runaway inflammation or cytokine storms Cytokine Storms, and most certainly helped us buy time to get out of town.
Our Oregon-based medical team and we were in agreement that the underlying cause was reactivation of Borreliosis (Bb) [known by the disparaging term “Lyme Disease”] caused by large doses of antibiotics to to treat Pertussis and overlapping pneumonia that I came down with in late May and June. The doctor in Seattle who has followed me in remission for the last several years also agreed and asked that I have a chest port installed to aid the eventual use of IV antimicrobials and possible IV hydration and nutrition. I arrived in Seattle with this chest line in place, and was seen by my Bb treating doctor. He tried me on a few small oral doses of recently tolerated antibiotics, with reactive results.
We had moved to a B and B in West Seattle near enough to ER and to the doctor. Move two. The place was in the lower part of a nice home, but the owner was oddly distant and in the end kept our deposit saying we had caused major damage to her walls. We didn’t have time to fight this, and money was flying through our fingers like moths.
After a week of attempts, and me on a pure fast of nothing but water by then a couple of weeks on, he asked that I be admitted to Swedish Hospital. At one time the crown jewel of Seattle hospitals, but in a state of disarray, while they were unbeknownst to us in transition to an Oregon-based hospital take over by the Providence system.
Among the list of differential diagnoses submitted was only one neuropsych possibility, which from experience DH and I know is not a good thing to include. Sure enough Swedish landed all over that one, and looked no further. I, a robust Sicilian Amercan, with a dollop of Alsatian, suddenly developed "anxiety" about food. It was all in my head.
I was warehoused for almost a week the last week of July. No food was offered, even though I asked for observed food intake with standby emergency support. The hospitalist, a frightened and over her head LPN, told us that we had a DNR (Do Not Resuscitate) in place and that they wouldn't intubate if swallowing or breathing became an issue.
We both "fired" her on the spot and plotted my get away. Thankfully the MD in charge relieved us of the need to flee by coming and telling us there was nothing that could be done as they didn't have the know how. In this particular system each practitioner is a silo with little or no consultation or collaboration with other specialists.
We left Swedish and moved briefly to a La Quinta Inn nearer University of Washington while we waited for an apartment near the U. Move number three.
I was also referred to an Environmental Medicine doctor who is a last resort for the most sick of people.
We tried to establish with University physicians, and oddly the first contact was with a Lic. Nurse Practitioner, whose job was to coordinate me to specialists such as asthma, neuro, GI, and so on. The schedule stretched out for months and the urgency we felt was not matched except in one case by a nutritionist. I was nearly a month at an average of 2-300 calories a day, down 18 pounds. We got into our apartment. Move number four.
DH needed to go home to check on things, show watercarrier4diogenes around, and bring back some things we needed. The call went out thanks to llbear. Within a couple of days a wonderful Kossack from a hundred miles away came to stay, fetch things, take me to the hospital as needed, and be a good companion as could be. Her husband checked on her to be sure we weren't mashers, and really a woman in need was there.
We were both IT people, and hit it off right away. She is truly amazing. She is a quilter and word was out that SaraR and Winglion were working on a quilt for Regina.
The long fast slowed inflammation things down just a bit, and I was able to start some soups and broth-based food. This interlude lasted about a week.
Somewhere in there, friends brought up Harry for the first time since we had been in Seattle. We needed him and he needed us. We picked the apartment because they took woozles. It started out at $125/night but after a week we negotiated down by half, and felt lucky. We were people in a hurry: desperate to be where there are smart and caring people; frantic to find a place close to a good hospital; searching for answers.
We continued along two tracks: UW ER/physicians and the Environmental Med MD, not knowing how things would pan out or be the way forward.
Our records from Swedish caught up to UW, and my previously attentive ER residents and attending MDs began to park me when I showed up. I often would sit for hours in ER waiting rooms hoping not to need to be admitted. The first few times there, they were great, but once the neuropsych diagnosis from Swedish showed up, even IV saline was off the menu. I languished in their system.
By now I was starting to have trouble even drinking water at times. Things were getting dicey. Enviro doc was developing a working theory about what was going on, and was ready to trial in succession several easily acquired meds.
The first one only triggered the reaction. He felt I had several days to a week if I couldn't eat or drink water. I began a compounded med used for asthma in Europe in a capsule form. At last, something I didn't react to. A beginning.
Fanfare for the Common Man: Aaron Copeland
We made plans to see my Infectious Disease doctor now working in DC, for the second week in October as I was making slow progress and we could possibly envision travel by air.
While waiting for an apartment to open up we stayed in downtown Bellevue in Adoba (Microsoft) corporate apartments. Move number five. Poor Harry, he just wasn’t used to all the trucks, city noise and traffic coming at him from all four sides. He was one stressed doggie.
We leased an apartment, at the end of August for 90 days, nearer the one doctor who elegantly and simply sorted out my physical problems. Move number six.
In yet another hospital system, but with referrals from a doctor so well thought of and set up with a pcp for the first time in a long while. Finally, we could look ahead, a week, two weeks, a month or two.
Our visit to DC in October was more than we could have hoped for.
By the time of the visit the working theory was that I have Mast Cell activation especially GI, mouth, esophagus, but underlying it all is activation of Borreliosis, and possibly other infections I am known to be harboring. The GI component is most likely caused by infection and inflammation of the Vagus nerve especially in the upper GI. It explains so much, and gives us a path forward. DC doc wants local doc to work with me for awhile longer on the inflammation and added in meds for quieting Central Nervous and Limbic systems. Both doctors agree and are working together.
For some reason, each time we prepare to move, I become grief-stricken about leaving our home of eighteen years. If loss of a home can cause the loss of heart, this is what it feels like.
My tests came back showing both organophosphates and organochlorines in my bloodstream. As I was fasting, the stored chemicals leached out of my fat stores and were captured in tests. Both doctors agree, going home for very brief patches to retrieve things we need, supervise work needed and to organize for the change of seasons is all we can manage. But going back to our valley is not an option.
In the twilight of sleep as I awake sometimes before I am fully present, I feel as though I am in my own bed, at home, and with no worries. I stretch out and think of all the plans we have for our Kit house. And then, and then, reality seeps in and I realize again, that we cannot go back to live. With the under lying infections my immune system is already taxed, but chemicals we are not adapted to only adds to the load the immune system must cope with.
A friend, knowing our ongoing attempts to live with persisting ill health for the last fifteen years, the isolation and challenges, asked if we experience joy. I was shocked at the question but after reflection realized that we may not have conveyed the moments of joy and pleasure we have had with friends, the beauty of nature and simple savoring of wine or meals. Those things don’t go into the Christmas letter.Time can go by very quickly when a person is busy with illness. But we have even in this last six months looked out and seen the golden leaves of Autumn; wisps of cloud in NW fir stands; felt the freshness of ocean air on a ferry; lost ourselves in live music.
While I was slipping into increasingly dangerous episodes, Kossacks were swinging into action: Aji put out several diaries asking for help: Regina needs help -1;and updating here Update on Regina; Kitsap River put out another request for help when I was captive in a hospital system that is nuts, not me. Regina in the hospital; llbear put out the word for someone To come help for the weekend while DH went home to get some much needed things Seattle Kossack to the rescue; and for someone to come live in our beloved Kit House. We were taken under wing by watercarrier4diogenes our home and Regina's official uncle.
We talked with Kitsap River, loggersbrat, and my new angel from eastern Washington, who had to live with one of my ER escapades as DH was retrieving things from home.
I decided unlike any other place I have travelled to, not to decorate or embellish my surroundings as we moved through various lodging. During my professional years, if I stayed a week in a motel near a job site, I took candles and framed family pictures for my room. Always home no matter where I was working.
Now we have a most wonderful quilt designed and lovingly built by SaraR and Winglion.
Here it is on our bed.
We have leased an apartment east of Redmond, no further from an ER than where we are now in Issaquah, but closer to the environmental med md, and nearer to a very nice doggie park/ranch for Harry with beach access to the Snoqualmie River. Move number seven, this Friday.
Some things our quiet and wonderful SaraR spearheads: Community Quilt Projects, which is shared with her sister, winglion. They have brought comfort and solace to so many and not only Kossacks. Sara is also rounding up lists of the skilled crafters, artists, writers and other talented members of our Kos community: Kos Katalogue. Who knew we have so many with so much to give.
The lease is for a year, after which we will hopefully be launched into a new chapter of our lives together. This home we will decorate and embellish with our things starting with our new quilt.
We have no claim to future comfort or success, but we are going forward each day. And we know this: home is our friends, our Kossack community and where we can sleep under our new beautiful quilt.
I don't often stay in touch because sometimes I don't have much new or good to say, or literally the energy, but oh to have ordinary conversation and ordinary cares to share in ordinary ways.
We have many friends who have reached out and let us know they were there to help. Some unseen and and unheard like my friend, Karen,
she knows who she is and the intense work of Aji, Kitsap River, llbear, watercarrier4diogenes, citisven and so many more Kossacks and friends.
And so we give thanks for the riches of spirit we share and receive.