Thursday, December 9, 2010

Minnesota Days - Real life in Room #316

Part 1

The Patient Advocate took his monthly trip to Minneapolis in October. This blog post will be long - and is not for everyone. I will split it in three parts as some readers might find this tedious and boring – and will want to skip over it.

The PA flies to Minneapolis from Philadelphia for one week every month. His daughter is housebound in St. Paul, now for over five years (sick for eight). The PA rents a studio apartment (Room #316) near Loring Park in Minneapolis. The building is a former hotel reputed to have had Liz Taylor and Jackie Gleason as residents. Can this be true? These days this rental building is full of young and elderly oddballs, almost all of them dog owners. The PA is not a dog person so this makes for interesting confrontations in the elevator. Young women with Doberman pinchers invite the PA to share the small elevator, but the PA politely declines, preferring at that point to take the stairs.

It is a strange, uprooted and disjointed life that the PA lives in Minneapolis. It is full of constant daily pressures. The PA chooses to live in Minneapolis, eight miles away from his daughter, as he wants ”his own life”. The Patient Advocate prefers not to live in his “daughter’s town”. She needs her space. This has proven to be a very wise decision.

Fighting ME/CFS takes money - and lots of it. Through long-ago “good fortune” (those were the days), the Patient Advocate owns a small apartment in lower Manhattan. The PA short-term rents this apartment for cash, traveling on an almost weekly basis to NY from his home outside of Philadelphia. The Patient Advocate cleans the apartment, does the laundry and greets the visitors – mostly folks from Europe or Australia. The PA has become very adept at cleaning and doing the laundry. The PA is especially good at cleaning bathrooms. All money received goes directly towards his daughter’s support and treatment. The Patient Advocate and his wife have completely rearranged their lives, financially and otherwise, to give priority to the betterment of their daughter. .

On a Thursday night in late September, the PA spent five hours at JFK waiting in weather-related delays for his Sun Country flight to MSP. He finally arrived in Minneapolis at 3 in the morning. The PA slept a few hours, and then started his tasks.

First up was an appointment with one his daughter’s doctors. This particular doctor – a gal - visits my daughter in her home once a year – an unheard of situation in this Progressive state. Generally doctors do not make house calls in Minnesota, a state with heavily regulated medical care. The PA's daughter has not been able to get to this doctor’s office for five years.

The Patient Advocate makes contact with his daughter’s doctors every three to six months. These consultations allow the PA to update a particular doctor about current treatment plans and future possibilities. It is a form of “checking in”. These doctors are sympathetic - even though the might not know much about ME/CFS. Most importantly, they are willing to write prescriptions, or to order routine (or experimental) tests. The Patient Advocate has assembled a cadre of physicians from all over the world who are contributing to the recovery of his daughter.

This particular physician has gained a growing respect for ME/CFS. She has “come around” from initially thinking the Patient Advocate's daughter’s illness with psychological. This physician is one of a handful in the Twin Cities with whom you can have a conversation about ME/CFS. This bastion of perfection - these Twin Cities, this wonderfully balanced community - is a backwater for ME/CFS. Ignorance prevails in Minnesota and most medical practitioners think this illness is a psychological disease. Bless their little hearts.

On this particular Friday morning, the Patient Advocate tells the physician about XMRV and about the current breakthrough research. Much of the conversation is one-sided – a bit of a lecture - with the PA talking about XMRV, the WPI, the NIH, and the crossover of ME/CFS into the infectious disease category. Along the way, the PA asks for suggestions on Infectious Disease doctors in the Twin Cities. It is the Patient Advocate’s opinion, based on unfolding events, that his daughter’s “illness” definition has moved into an Infectious Disease category. This has been obvious to the PA – a sculptor - since the very beginning of her illness - but now the evidence is piling up.

The PA is intent on getting his daughter an Infectious Disease doctor in the Twin cities, someone who will put his or her mind to real treatment or maintenance possibilities. (Incidentally this does not mean that the PA is looking for someone to dish out antiretrovirals. The need is much broader than that.) The Patient Advocate’s daughter has been without a real doctor for her entire illness. She does not have an attending physician, someone who can admit her to a hospital if necessary. This is a disgusting and shameful fact. One negative aspect is that it puts the PA himself in the position of being a quasi-doctor, and of making medical decisions. This is the reality of ME/CFS. It does not take much imagination to understand that this is a highly unwelcome position to be in - and a source of a certain amount of irritation and anxiety on the part of the Patient Advocate.

This particular doctor feels that most if not all the I.D. doctors in the Twin Cities will be resistant to engaging a patient like my daughter. However this doctor does identify the HIV clinics in the city - and she makes one quite specific suggestion, which was very helpful (This didn’t pan out). She also offers to send along a query to the HIV clinic in her own hospital, and asks the PA to write up a concise short paragraph on his daughter’s situation.

Part 2

It is October and a beautiful month in Minnesota, particularly for biking (Soon it will be ice and snow and cold biting wind, and this the Patient Advocate cannot get out of his mind.) One of the positives about the Twin Cities is that it is a very bike-friendly city. The Patient Advocate brought his bike when he first rented an apartment in Minneapolis. Almost immediately it was stolen. The PA found a bike shop and bought a used one - and he has been able to hang onto this one. Moving around the cities on a bike slows things down - but it is a great stress relief. Yes, the Patient Advocate too has stress! And biking has other compensations - as you can get close to nature. The irony does not escape the PA that while he exhausts himself biking around the cities, his daughter is confined to her room, exhausted.

During his visits to Minnesota the PA has various major and minor tasks that keep him busy. The days are long and hard. Each trip presents its special problems. On this occasion one of the PA’s tasks is to establish an “Oasis area” - embracing the rooms in which his daughter spends her time. Recently the PA did the ERMI mold test with Mycometrics. Surprisingly it came back with mold at the 92% level (of the national average). Whether this test is reliable is not clear - nor is it a simple matter to interpret the results. However this elevated mold test in combination with several elevated Shoemaker tests (c4a and MMP-9) indicate that mold might be a player in his daughter’s situation. Since it is impractical to consider moving, the prudent thing to do is to get rid of (or neutralize) the existing mold in living and sleeping areas. The Patient Advocate is aware that this is a complex problem, far beyond his powers to decipher. But the PA must do what he can do.

The washing of these rooms takes place in stages over the next several days. It entails washing the floors, walls and ceiling with a non-allergenic soap, followed by vinegar and water. Vinegar is reputed to inhibit mold. The PA is good at washing although it a boring job. All excess paper products are removed from the rooms and placed elsewhere in the apartment. In this way this set of rooms are made free of mold on existing surfaces. With the arrival of a second Aireox hepa air filter (from Needs), the area is made an “oasis”. Maintenance washing will have to be done.

During these week-long visits the PA tries to retain his own personality. The Patient Advocate does things to maintain his sanity –foremost amongst these is going to the orchestra. Minnesota has one of the finest orchestras in the world, although judging by attendance, there seems to be little local recognition of this fact. The director Osmo Vanska (personalized locally as “Osmo”} is a compelling conductor and has whipped this orchestra in shape. The Patient Advocate has heard the Minnesota Orchestra in Carnegie Hall in NY, where, because it is center stage, they play out of their heads. This weekend they played Brahms' stupendous 2nd symphony. The orchestra and biking, along with an occasional play, are the outlets that the Patient Advocate allows himself from his “tasking”.

Early Monday the Patient Advocate biked six miles out to St. Louis Park to see another of his daughter’s doctors. The bike ride was quite fine and it was a beautiful early morning. The PA had the illusion of biking into the country even though St. Louis Park is only a suburb of Minneapolis. The PA’s daughter has not seen this doctor in five years. This doctor is willing to talk about his daughter’s situation. His help is greatly appreciated, although it is recognized that this is not a good way to do medicine. He is the principle go-to guy in the Twin Cities for CFS.

This visit is roughly a repeat of the Friday doctor consult. The Patient Advocate wants to keep this doctor informed of what is going on in the larger world of CFS. This very compassionate and independent doctor is pinned down trying to help his many patients. He struggles for acceptance in the Twin Cities; and the PA is always a bit worried that this doctor will not be there the next time the PA wants to see him. These managed health care environments seem to have a way of “disappearing” independent doctors.

In addition to talking about XMRV, the WPI, and research into ME/CFS, we discuss thyroid regulation. Some of the hormonal problems of ME/CFS, like Hashimoto’s, have to be managed by the patient (and her advocate). Outside professional help is useful in that it can confirm the direction taken. Thyroid regulation is complex and elusive. Having more than one opinion is necessary in order to make a knowledgeable decision.

These doctor consults are difficult for the Patient Advocate - as the doctors never drop their “professionalism”. The PA surmises that most doctors do not like to talk to patient advocates. The normal doctor patient relationship becomes too skewed. While the Patient Advocate always remains polite and appreciative, the PA can never tell what these doctors think of him - whether they think the PA is desperate or on a hopeless mission or just full of shit. Most certainly they feel that the balance of control is not right and something is out of kilter. The Patient Advocate remains undeterred in and pushes forward.

The Patient Advocate mentions XMRV and the doctor says that he follows it a little. The doctor is surprised that the PA had been able to find out where to get the test done, and that has actually had it done. The PA is surprised that the doctor is surprised. After all, the PA has handed this doctor all sorts of sophisticated tests from obscure labs all over the world. The PA urges the doctor to look at Peter Cairns’ videos on the WPI. Clearly this doctor could use some more information than he is getting, and the PA tries to provide it. The PA gets the sense that none of this “adds up” for this doctor - and it is a very long way from the daily grind of dealing with his patient population. Who knows how to bridge this divide?

During the course of any particular day there are daily tasks – endless small errands, shopping for food and treats (coconut juice, homemade flaxseed crackers or wild rice organic chicken soup, for example), going to the FedEx to copy test results or to fax letters, writing in his journal, cleaning his daughter’s apartment, picking up pharmacy prescriptions – all attendant to picking up the slack of an invisible life. In addition the Patient Advocate does his regular several daily hours of research and communication on the internet – including the writing of this blog.

Lest the reader think everything moves in a certain pre-ordained direction, the Patent Advocate can disabuse them of this. Any sense of any success or of things going in the right direction is shaky at best and comes in the smallest of doses. Most of the effort is expended to maintain the status quo or to keep things from back-sliding. Finally there are the interactions and circumstances that bring with them the sense that things are not going in the right direction, that realization that the situation is becoming further tangled. In other words, there is a great sense of defeat, both small and large. One example follows.

Part 3

This trip includes a particular irritation. For no particular reason, the overzealous local township has taken it upon itself to make sure the apartment in which his daughter lives is up to code. We are supposed to believe that these people are “just trying to help”. They are unaware of and indifferent to the fact that they are directly threatening my daughter’s health. The inspector is a young fellow who feels that he needs to be extra vigilant, especially since there is nothing particularly wrong with the two-apartment house. Having the constant threat of inspectors and carpenters lounging around and dropping in as they see fit, is a great source of stress for my daughter. These “inspections” and their follow-up “cures” have precipitated a number of crashes for the PA’s daughter.

The Patient Advocate spent a great deal of time trying to protect his daughter from this insult. How does the PA tell a bunch of Minnesota dolts that their existence and presence is bad for his daughter’s health? Of course the first thing that they wanted to do was take out the stair lift - installed with great care to code requirements several years ago (by the PA himself). This stair lift is the lifeline of my daughter, and allows her to occasionally get down on the porch or out into the yard for a few minutes. With zero information about stair lifts in his brain, this neophyte inspector sees danger. The Patient Advocate has to appeal to State regulators and local stair lift inspector records to try to fend off this inspectors’ zeal to prove that this stair lift was unsafe.

Many very minor problems were cited in my daughter’s apartment. For instance there was a non-structural crack in the ceiling of the kitchen that allowed for a few very small flakes of paint to appear. Despite the fact that this is entirely a cosmetic situation the local “enforcers” required that the entire kitchen ceiling be scraped and repainted. In order to keep painters out of my daughter’s kitchen for the two or three days necessary to do this job, the Patient Advocate took it upon himself to do it. Of all the situations in the 67 years of the PA’s life this was one of the most absurd.

Tuesday is the day that the PA's daughter gets IV treatment. This also often involves doing a blood test at the same time. The Patient Advocate arranges all the ordering of test kits, along with the paperwork and the shipping. He is handed the blood by the IV nurse and then he goes into action mode. While much of this testing procedure has become routine, obstacles are always arising - as there is a slender thread connecting the home-bound ME/CFS patient to the real world. In this instance an underling at the FedEx refused to ship the package - as it contained a “liquid” and she claimed that she was prohibited sending liquids from her shop – this in spite of having checked it out with the manager that very same morning. Multiple trips to FedEx are always necessary to make things happen. Making sure of every detail is part of the PA’s job. The PA had a sharp exchange with this gal, threatening her for her impertinence - and the blood sample eventually was shipped out in time.

One of the things that the Patient Advocate likes to share with his daughter is juicing – vegetable juicing. Several years back the PA latched onto this idea, and it has developed over time. The PA enjoys going to the Whole Foods, lugging, slicing and juicing the vegetables. Vegetable juice is like gold. The PA and his daughter make a load of juice with her Omega 400 juicer. The juice is made from lettuce, tomatoes, carrots, beets, cucumbers, red peppers, celery, garlic, and ginger. The PA’s daughter believes that juicing is good for her. How could it not be?

The Patient Advocate had a phone consultation with a third MN doctor on Tuesday. The PA and this doctor talked about the methylation protocol and the PA's daughter’s improved reduced glutathione status on the recent Vitamin Diagnostics test. We talked a bit about mold, and the doctor gave me some suggestions. We discussed thyroid regulation.

This doctor is very hip to XMRV - 8 of 10 of her lyme patients have tested positive for XMRV. She will be going to the ILADS conference in Jersey City. The Patient Advocate alerted her to the talks of Montoya, Marcus Conant and Brewer and she was appreciative of the heads-up. She made a suggestion of an Infectious Disease doctor at the UM. The PA wrote this doctor (along with 60 other I.D. doctors in the Twin Cites), but of course the PA did not get a reply.

The PA writes up a summary of every doctor consultation. Everything needs to be written down and communicated to other members of the family - so that they are clued in on what is happening (in case the PA drops dead on his bike). Years of detailed note taking pays off in various ways.

Wednesday morning the Patient Advocate finally figures out how to put his bike on the front rack of the buses - so that he can move around town faster. The morning also involves sending test results, mailing stuff at the post office, emailing with a lab, going to the medical supply company to discuss the alleged “problems’ with the stair lift, calling to get the specs on the stair lift and buying replacement batteries, buying artichokes (The PA’s daughter likes artichokes), and going to the hardware store for paint supplies.

Tuesday the PA climbed up on his ladder and sanded the ceiling of his daughter’ kitchen. It is difficult for a 67 year old to do this, but the PA has done this many times in the past. The PA has to do this job as it is preferable to a situation where workers come into my daughter’s apartment and make her sicker. The local code enforcer has zero interest in the particulars on the subject, even after a long conversation with the Patient Advocate. The threats to a ME/CFS patient come from every conceivable direction, and it is the job of the Patient Advocate to try to protect his patient. Sometimes the PA is successful in this enterprise, sometimes things do not work out - and the jerks of the world accomplish what they want.

The time in MN is not leisure time. From the rise from bed at 6 until the retirement at midnight the day is full of one consternation or squabble or uncertainty after another. For instance in a routine matter of a blood draw there can be massive complications. The system is not built for home draws, and very few people understand what it takes to do these tests out of the home. All sorts of people tell me that they would do the same if their own child was sick. The Patient Advocate know that this is not true. Most people, most healthy people, are not equipped to do this job. .

Thursday was mostly sucked up with dealing with apartment doings. The Patient Advocate met with the safety inspection person and went over the specs of the stair lift. This Bruno stair lift is one of the best, most reliable and most expensive in the business. For the moment let’s forget about the PA's acquisition of this stair lift through Craig’s list - at a bargain basement price. For every patient advocate looking for a stair lift, there is someone else desperately looking to unload one. The Patient Advocate hopes that he was able to convince this particular inspections fellow that this was not a flyby installation, and that it had been maintained by one of the best medical supply companies in the Twin Cities. It seems that the inspector will insist on a few minor changes, but that the stair lift, the lifeline of the PA’s daughter, will be able to stay. The entire situation was bizarre and ate up a great deal of time and concern on the part of the Patient Advocate - to say nothing of the effect on his daughter. ME/CFS is a stress related disorder and this kind of stress is pure murder.

Lastly, the PA painted a final coat of paint on the ceiling of his daughter’s kitchen. The Patient Advocate used paint that was VOC free and this went fine, except for the paint that dripped all over his face and arms. It is difficult to paint a ceiling.

The PA buys some flowers for his daughter, kisses her goodbye and gets on a plane back to Philadelphia and begins preparing to come back the next month. And so it goes, month after month after month.


  1. Both tea tree and lemon essential oils are very effective in eliminating mold. I used this method last month to get rid of the black mold from my boyfriend's carpet. I used 5-6 drops of lemon oil in a small bucket of warm water and a scrub brush.. the mold is GONE - one vigorous scrubbing was all it took, this also works for hard surfaces as well. You can find essential oils at health food stores (I think Whole Foods might have them as well).

    Thank you for sharing your story- your daughter is very lucky to have you as her PA.

  2. Thank you, Patient Advocate. You have given us a small glimpse into your life dealing with your daughter's illness, and I think this is what love looks like. Your daughter is fortunate to have you, who love her so much that you do all this.

    I know it could not have been easy to reveal all these details of this struggle, but all through your story, I kept wanting to ssy, "Yes, that's how it is. Patient Advocate really knows." I don't know why I'm surprised. Everything you write is so honest, I should have known.

    You are a blessing to your daughter, of course, but in your sharing, you are a blessing to all of us. Thank you.

    Patricia Carter
    XMRV+, 24 years ME

  3. A touching story of love and dedication. We should all be so lucky to have such a Pa (and PA). I've also used vinegar for treating mold, but have had better luck with Concrobium Mold Control which is also nontoxic. I just spray it on any obvious mold in my basement and it really puts an end to the musty odors and my sneezing and itching.

  4. Your daughter is so blessed to have you. And I have never used the word blessed before.

  5. Thank you. The story really made me emotional. As a single mother (ME/CFS ill for ten years and bedridden for 3 months) I've been taking care of an Asperger son and another son with IBS. The thruth is that the health of my kids matter more to me than my own screwed up health. Your love for your daughter is amazing and not of this world. Not many parents go through similar ordeals. I hope you just realize that next to the fact that you are a big help for your daughter, you are a big help for me too. You became my hero.

  6. Wow. Just Wow.
    My parents disowned me after I became ill and couldn't take care of myself. It's been over 22 years now. They didn't want the burden. I became homeless as a result.

    They never gave me a dime let alone of themselves.

    I don't think my father ever gave me flowers even when I was well.

    You live what love is.

    I hope one day I will experience that kind of self sacrificing love from another human.

    Thank you for giving me something to imagine and hope for.

  7. My mother didn't even bother to tell my father when I was first diagnosed with ME/CFS. I guess it didn't seem important enough. I was pretty much on my own. If only our parents were all like you.

  8. This is what love looks like. Extraordinary love.

  9. How many of us do you suppose have fallen through the cracks of society and ended up in this netherworld...patients and carers alike?

    Thank you, Patient Advocate

  10. Thanks for sharing your story. This is what ME/CFS does to those who don't have the illness personally. The medical neglect and the venal politics surrounding this illness harm millions of suffers as well as those who are still engaged with those patients.

    Your love and devotion to your daughter made me weep in empathy for you and for her.

    I wish I, and all the other suffering CFS patients, had someone like you in our corner. Like most ME/CFS patients, I have no advocate and it is nearly impossible to get others to understand how paint fumes or noise, stress and commotion hurt us.

  11.'ve no idea how much I wish I could seriously ask you PA to adopt me..diagnosed in 1991 CFIDS/Chronic mono..have fought same fight on my own....right down to Paint fumes..THANK-YOU..<3

  12. I would like to second what Patricia said.

    Contrary to being boring, your blog was the highlight of my day. They say that empathy is healing, and you are able to express so much empathy for what ME/CFS life is like for patients and carers.

    Thank you for your blog and your understanding.

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  14. God bless you...I am so awestruck by your lovingkindnesses. I don't know how else to say this but "Im so proud of you!"


  15. I kept saying, "Yes."

    "Yes, that's how it is. Yes, that's true. Yes, it's in the details."

  16. It has been "one of those weeks" managing Blakes business as well as my own. Thank you for giving me a glimpse of another parent doing what I do. I almost feel relieved. Best....Julia....