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Posts Tagged ‘Raynaud’s syndrome’

Ethical Criminal Behavior

WARNING! The following article contains descriptions of a serious medical condition affecting a child, criminal behavior and illegal drug use. If any of these things offend you, leave now.

 

Raynaud’s restricts blood flow the the extremities. Black fingers look worse, but white indicated no blood or blood flow versus pooling of blood.

One should always be cautious when thinking someone else has it better. Money does not solve all problems and paying “anything” to fix a problem does not guarantee even the most limited of service or results.

It amazes me how many readers want to emulate my path in life. Frequently I hear a reader seeking a rural life coupled with a career in accounting because they read this blog. It was a path that appealed to me and one I enjoy. It might appeal to you as well, but you should always think hard and reflect on what is most important to you without consideration for what some crazy guy in the Northwoods of Wisconsin did.

Money causes people to overlook the less than desirable parts of their mentor’s life. Business, financial and family success are important indicators in people you wish to follow and learn from. What money doesn’t do is eliminate the most difficult decisions and medical issues.

Mrs. Accountant and I have two daughters, both with serious medical issues. If my path were different, one with less financial resources, it is likely at least one of my daughters would no longer be with us. Money withstanding, that fate may not be far off anyway as you will see shortly. (You can read more about my youngest daughter’s medical conditions here.)

 

Descent Into a Medical Nightmare

Heather, my oldest daughter, entered the world a bit early. Nineteen days in the neonatal intensive care unit was the start she needed to be a normal healthy child.

Heather has always been petite as she grew. Many foods did not agree with her so she ate little and is very thin. This is different from not wanting to eat. She wants to eat everything, but so many things make her ill.

By the time her age reached double digits she developed serious medical issues. She was diagnosed with Raynaud’s. Later scleroderma was added to the list. Both are autoimmune rheumatic diseases. People with Raynaud’s frequently suffer from scleroderma as well.

By high school Heather was so thin and was so unable to keep food in her that we had her institutionalized for a short while. She was so thin the police were called in because the doctors worried it was abuse. They realized quickly we had Heather into every doctor we could find searching for a solution. The institution was at just as much at a loss as the doctors and we were.

If you ever saw film of the Nazi concentration camps, that is what Heather looks like in her skivvies. I can’t tell you how scared Mrs. Accountant and I are by this. And it is not an eating disorder; she wants to eat! Recently Heather told us it has been so long since she felt hungry she doesn’t know what it means anymore. All too often what she eats goes right through her.

I can’t count the number of doctors Heather has seen or the number of medications she has taken. And Mrs. Accountant and I have not been sitting on our hands either. Medical research is a daily part of life in the Accountant household. 

Nothing seems to work. Every medication tried doesn’t improve the situation and Heather’s body has no more to give. This kid barely breaks 80 pounds (36 kilograms). She is 5′ 4″ (162 cm). As you can see, we don’t have room for another failure.

The last visit to the doctor took all the wind from our sails. The doctor gave up. She said there was nothing else she knew that could be done. Heather has tried virtually every medication known to man. She is in constant paid. Serious pain, the kind that brings tears to the eyes. It is devastating to watch and even worse as a parent.

One of the medications prescribed Heather is Sildenafil, aka Viagra. Raynaud’s usually isn’t a serious condition. But, as the doctor once said, Heather has the worse cases she has ever seen. With Raynaud’s blood flow is restricted, especially to the fingers and toes. Death of tissue and gangrene are serious possibilities. Discussion of the amputation of her first digit was recently discussed. 

Sildenafil is prescribed for men who need to “get it up”. In a family that can still laugh in the face of such dire consequences, I call Heather’s medication her “boner pills” and remind her not to get too excited when she takes her medication. The cats don’t like it when she acts that way.

Except it is getting hard to laugh. Sildenafil causes her massive headaches and pain throughout her body, especially in the area of a surgery she had years ago to deal with the same medical issues. The hope was Sildenafil would increase blood flow to her extremities. Unfortunately it only puts her in more pain.

Nothing seemed to work. Everything tried seemed to make things worse. It is unbearable watching a child in never-ending pain. I can’t imagine what it feels like to be her. 

And now the last doctor has given up. She said she doesn’t know what to do. She has joined the long list of doctors before her. The doctor then prescribed Tramadol for Heather.  

Tramadol is a highly addictive prescription for moderate to severe pain. Heather refuses to take the medication because she does not want to become another statistic in the opioid epidemic destroying America. Like I said, she is a good kid. If the paid gets to be too much she will relent, but she doesn’t want to go down that path.

All the while this is unfolding I am immersed in research material on Raynaud’s and scleroderma. Scleroderma is especially insidious as it hardens the skin. The disease moved inward, attacking her internal organs. Heather’s lung capacity has been dropping rapidly. One lung is approximately half calcified or callused or whatever the medical term is for a lung that is one lump of hard scar tissue.

A few months back I found a possible solution in a baby aspirin. I read about this before many times and discounted it as too simple a solution.   

It started when I asked Heather a series of questions. At some point I mentioned aspirin with the warning aspirin thins the blood (which could help blood flow to the fingers and toes), but could make it difficult to stop bleeding. It was then Heather informed me she doesn’t bleed when cut. Just the thought of that makes me shiver. Not bleeding seems like a good thing, but that is far from the truth. Not bleeding when it is normal to do so means blood isn’t where it should be with proper pressure.

Heather’s response solidified my thoughts on aspirin. I told her to start with a baby aspirin three times a day. My recommendation was to test dosage and see how she reacts. I was comfortable with the recommendation and dosage because aspirin is so well understood and a baby aspirin three times a day is less than one adult dose. Heather is 24.

Heather is very thin. This old picture shows her low weight.

I asked Heather to also call the doctor to make sure there would be no interactions with other medications she is taking. The doctor’s response was shocking.

The doctor didn’t see anything wrong with interactions, but was more worried about a potential stomach ulcer from long use. She didn’t like the solution I found.

What! She just prescribed a powerful and addictive pain reliever and is worried about a stomach ulcer from long-term aspirin use!? Really! 

I promised not to use certain words on this blog anymore as it is a family publication. You do not understand how hard that is for me to do at this point of the story.

I also have many doctors who read this blog and are also clients. I will refrain from my opinion of the medical community at this point as well. My child, my baby, is dying! And all I get is an addictive pain reliever and admonishment for even considering a low dose of aspirin? 

The doctor relented and said one low-dose aspirin per day would be acceptable.

We also asked the pharmacist if there would be any issues. He checked and said there were none. He also said aspirin was the first thing that popped up on his screen for the medical issues affecting Heather. Why hasn’t the doctor been exploring this simple therapy? The need to keep the patient sick so she can make her house payment? I know of no other explanation.

Here is the kicker. The aspirin had an immediate and positive affect. With Raynaud’s the fingers and toes are frequently black from low blood flow and snow white when there is no blood at all. Within days her fingers and toes were the most normal pink I have ever seen them. Ever!

The toe they were talking of amputating started to hurt. That is a good sign as if means the tissue is still alive! A few weeks later even that toe showed good color.

Best of all, Heather gained two pounds. It isn’t much, but it beats the constant drumbeat to the graveyard.

Unfortunately, the solution came too late. The damage was done. Internal organs would have healed if the solutions were discovered 10 years ago. But is wasn’t. Her stomach is a mass of scar tissue and the lungs are not healthy. Heather is also in pain constantly. (The pharmacist also recommended only one low-dose aspirin per day as well from the material he looked up. I wanted a larger dose to deal with the pain. Heather settled on one dose per day with another dose at night if her fingers turned black.)

Time had run out. It is bittersweet to find the answer to a serious problem after it is too late. Her digits are better, but internal organs need time to heal and time is up. The increasing weight didn’t continue. If only I had more time. If only there was a way to give Heather’s body more time to heal before time ran out.

And that is where one last piece of research came in. I knew of this solution for some time, but it will require me commit a serious crime. And it has me thinking about ethical criminal behavior.

 

Crime Spree

What I am about to share is something I never in a million years would ever have thought I would do. What I am contemplating is so foreign to me I barely believe I will do this.

The alternative is no better. Standing around at my daughter’s funeral with my hands in my pocket telling people as they offer their condolences, “At least I didn’t commit a crime.” seemed rather cowardly to me. I cannot stand idly by as Heather deteriorates. The doctors admit they are out of ideas. Well, I never run out of ideas and I never quit. (Maybe when I’m dead I’ll stop. Briefly.)

There is a product that works as good as aspirin (has the same qualities as aspirin we are looking for in this instance) and also reduces pain and increases appetite. Yup, you guessed it. Weed.

I never used any illegal drug in my life, but always said if I ever got cancer and was in pain I would have no moral objection to using weed if it made sense medically. I also don’t look down on people who use weed recreationally. I see no need to try it myself, even though weed seems to be innocuous compared to alcohol and nicotine (two legal drugs).

Weed is still illegal (very illegal) in Wisconsin and at the federal level. Michigan allows recreational drug use, I understand. 

Heather’s situation is acute. Smoking weed would be really bad as her lungs can’t take such an assault. But edibles offer serious promise. Research, including long discussions with people who have used edibles for medical reasons (usually cancer) and recreational users has me convinced this is worth trying. I even ran across a lady with Raynaud’s that came to the same conclusion and has used weed for years to deal with the pain, eating and blood flow issues.

If this will reduce or eliminate Heather’s pain while increasing appetite there is a lot to like here. If we can get some weight on this girl her body might start to heal itself, eliminating the need for illegal medications in the future.

Neither Mrs. Accountant, my girls or I have ever used an illegal drug. It is something so foreign to me it is almost impossible to believe I am contemplating this. Of course, I can’t do this in Wisconsin. Law enforcement has no problem allowing people to die in jail without proper medication. Like some doctors, it’s job security. (Yes, you hear a tinge of bitterness in my voice.)

This will require a trip to Michigan or Colorado or some state where it isn’t illegal (at least on the state level). 

One person I spoke with while researching weed recommended a benefit. I explained money isn’t the issue. I would give all my financial wealth to save my daughter without a bit of remorse. What I can’t do is help her from a prison cell or stand around with my hands in my pockets.

 

Ethical Criminal Behavior

As of this writing I have not yet committed the crime. But I see no way around it. Driving to Michigan is still a haul and my guess is Heather will need regular dosing as most medications require. This isn’t going to be easy.

So why am I publishing a confession? Remember what I said about standing around at my daughter’s funeral making excuses for being too cowardly to take steps to save my daughter’s life? I could never live with myself if Heather died because I didn’t have the balls (that is as far as the language will go here) to save her life due to a law that said it is better to allow your child to die than take the medication.

I do not take this decision lightly either. I always tell people my reading tastes are catholic (lower case “c”), which means universal. That is only a little white lie. The one thing I try to avoid is books on illicit drug use. I don’t watch movies or TV with such activity either. I find nothing appeals at all in drug abuse. In fact, I find it repugnant.

And now, after I raised two wonderful, moral, ethical girls, I am considering this. Heather is shocked by my recommendation since she knows my feelings about illegal drugs. She also admitted once, when in serious pain, she was willing to try anything, including weed.

 

Financial Blog?

I imagine some will wonder what this is doing in a financial blog. Well, medical issues are a major financial issue, especially in the U.S. Medical problems have destroyed more than one small fortune in the past in the Land of the Free.

Today is Thanksgiving Day here in the States (the publication date). I have been the luckiest man alive and am forever grateful to God for all the blessings bestowed upon me. Yes, my family has many medical issues. But as Jordan Peterson once said, everyone you meet is either fighting a medical issue, has a family member doing so or someone close to them is. If you meet that lucky someone who is not, they will in a short period of time. It is the nature of life.

Illness is the norm. Treatment the solution. Modern technology has given us the tools to solve many medical problems. Our sensitivities have not kept up. As a society, we are willing to have laws that prevent very sick people from having comfort. As a society we are willing to have laws that prevent cure in people with cancer and other illnesses. As a society we still have maturing to do.

Even if you live in a country with universal heath care, illness still affects your finances. If you can’t work, money becomes an issue.

This is a personal finance issue. It is also a moral and ethical issue. 

As stated earlier, people sometimes want to emulate me. I discourage that kind of behavior. However, if faced with an ethical or moral dilemma, I wanted you to have my story, Heather’s story, as a reference to help you make the right decision.

Society has no room for people with my attitudes toward life. If this blog goes dark you will know what happened.

I read a lot so I also have plenty of references to pull from also. A Tale of Two Cities by Charles Dickens might be the best selling novel of all time with over 200 million copies sold. Many people remember the opening line:

It was the best of times; it was the worst of times. . . 

What people remember less are the final words of the novel:

It is a far, far better thing that I do, than I have ever done; a far, far better rest that I go to than I have ever known.

What I am about to do is very unnatural to me. It stands against everything I believe. This is what I call ethical criminal behavior.

And only the courageous and truly wealthy, those wealthy in here (pointing to my head and heart), can do.

 

 

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