The Online Resource for Massachusetts Poverty Law Advocates

Feed aggregator

Buffets One Day, Vomiting The Next — Life With A Rare GI Disease

CommonHealth (WBUR) - Wed, 04/27/2016 - 11:14am

Melissa Adams Van Houten was diagnosed with a rare GI disorder in 2014. (Courtesy)

I am going to share some pretty personal information. Not a big deal to some of you, I am sure, but to me, it is huge. I am not the kind of person who does this — or at least I did not used to be. But things have changed.

In February of 2014, I spent a week in the hospital and was eventually diagnosed with gastroparesis, a disorder that slows or stops food from moving from the stomach to the small intestine.

I am guessing most people have never heard of this; I know I had not, prior to being diagnosed.

A Life-Altering Day

My life changed in ways I could not have imagined — overnight.

One day, I was able to eat at buffets, and the next day, I was unable to tolerate all foods and liquids. I was hospitalized with severe pain and vomiting, put through a battery of tests (including one particularly terrible one where they forced a tube down my nose and pumped my stomach). Eventually, I was diagnosed, but was given only a brief explanation of my illness and its treatment before I was sent home.

For the next few weeks, I was on a liquids-only diet, and was told that I had to gradually work my way up to soft foods and (eventually) solids. I am able to eat some soft foods, these days, in tiny amounts, but it is becoming clear to me that I will likely never again be able to eat “normal” foods in “normal” amounts.

Thinking About Food — Always

At first, I told myself that I would not let this stupid disease define or control me — it simply would not be the center of my life. But as time passed, I began to see how foolish this was. Every single day, every second of every day, I think about food. I see it; I smell it; I cook it and feed it to the other members of my household; but I cannot have it myself.

I look in the mirror, and I see a skeleton. I try to eat even small amounts of food, and I am in agony. I am weak and fatigued to levels I did not think were possible. Some mornings, I do not think I have enough energy to get out of bed. I can barely concentrate and function enough to do everyday tasks. And almost every single night, my husband has to help me up the stairs to bed because he is afraid that if he does not, I might fall.

My 11-year-old daughter has seen me vomiting, screaming in pain, lying on the floor crying, and on the verge of passing out. It has frightened her so much that she has asked my husband to get me Life Alert.

What I Miss

I grieve over the fact that I can no longer travel or get out of the house much. I grieve over missing family events and not being able to attend my daughter’s activities. I grieve over not being able to go out to eat, or on a picnic, or to a concert. I worry that I will not get to see my daughter graduate, or get married, or have children. I am not on the verge of death today (at least, I don’t think I am), but when I look in the mirror and think about how tired I am, I realize that people like this do not have long life spans — and it bothers me.

I get frustrated because people do not understand how my life is affected by all of this. If you were to see me on the street, you would likely not realize I am sick. I do not look very sick. And because most people are unaware of the effects of gastroparesis, they ask me all of the time if I am OK now. I can’t seem to convince them that I am never going to be okay again — not in the way they mean it.

I am told that I “just need to eat,” or that if I would only try yogurt, I would be OK. My own doctor accused me of being an anorexic and told my husband to “watch me.” Though I know people mean well and are trying their best to help, it still makes me frustrated.

What You Should Know

Here are a few things I wish people understood about this disorder:

1. It affects people emotionally and mentally, perhaps even more so than physically. This is a lifelong illness that patients have to cope with — always. The resulting lifestyle changes and isolation can be difficult to manage. The seriousness of this condition was not impressed upon me at the time of my release from the hospital, and I could not properly prepare for it mentally.

2. There are very few treatment options available and the few that do exist come with serious risks and side effects.

3. It often takes years to get a diagnosis, and even then, many doctors have never heard of this condition and do not know how to treat it. Specialists are few and far between.

4. Although it can be challenging, there is help available in the form of support groups, non-profits and advocacy groups. Don’t face this alone.

5. The complications resulting from this disease (such as malnutrition, dehydration and infections) are often serious and can and do sometimes lead to death.

6. I wish people living with this disease knew that they had a right to speak up for themselves and should not have to apologize for being ill. Gastroparesis imposes many limitations upon us, but this is not our fault, nor is it something over which we should feel guilt. We should expect and demand that others respect our struggle, and we should forgive ourselves for perceived “failings” over which we have no control.

Still, It Could Be Worse

I am angry because I am a control freak, and I do not like being a slave to this disease. I do not like having to rely on others for help. I have screamed at, smacked and pushed my husband away for simply trying to assist me more times than I can count. I have thrown things (including food) across the room in fits of anger. I have intentionally gone without eating — even though I know I should not — just to “show” this disease who is in control. Crazy, I know! I am angry because I do everything that I am supposed to do — eat the right things, exercise and ingest the known medications — and I am still sick.

I think about the others who have this disease who are so much worse than I am. There are thousands of posts in my Facebook feed every day from people who have had to go to the ER or back in the hospital for dehydration, pain or other such conditions. I know so many people now who have feeding tubes or ports for nutrition. I know many who have developed other serious conditions because of the gastroparesis. I sometimes look at them and think that this will surely be my future, too, and it scares me. There are times when I am in such agony that I can do nothing but cry — lie on the floor and beg God to just let me die. He does not — and I am so thankful that he ignores those moments.

I mostly have a good attitude about my situation and try to make the best of it. I feel blessed that I have been given so many years with the best husband and daughter anyone could imagine. I am truly thankful for each day I get to spend with them.

Sharing The Burden

What I do understand is that it is somehow important to me to let people know what I go through — what all people with this disorder are likely to go through.

I share these personal details because I think it is important for people to better understand this disease. But I think it is equally important to share how much I have been blessed, and to let others know how much they matter and how much of a difference they can make.

I first joined a Facebook support group because I wanted to know what treatments and medications others like me had found helpful — but I hated the idea of support groups. I was there for information only; I just knew I did not need anything like support. Not for me! So foolish! You cannot imagine the blessing these online groups have been.

I have learned much, for sure, but I have received so much more than information. I have received more support, understanding and kindness than I ever could have dreamed. I have made friends that I feel I have known for a lifetime. I tell people all of the time that I hate this disease, but I dearly love all the people I have met because of it.

My neighbors have cooked meals for my husband and daughter; they have watched my child and my pets; and they have offered to transport me to and from appointments. My family has come to visit me, even though I know it is horribly inconvenient for them — and they have also stayed away when I have asked them to.

Do not ever be convinced that you can do nothing to help, that you do not matter. To those who are struggling, your efforts to understand, your cheerful words, your helpful attitude and simply your willingness to contribute and be present, make a difference.

Melissa Adams Van Houten is a wife and mother who was diagnosed with gastroparesis in 2014. She now advocates for others stricken with this life-altering illness. 

A version of this story first appeared at Health Story Collaborative.

Categories: Health Care

Budget Process Improvements Can Help States Make Better Decisions

Center on Budget and Policy Priorities - Tue, 04/26/2016 - 4:56pm

Virginia’s recently enacted 2017 budget creates a unit within the Joint Legislative Audit and Review Commission to track the cost and effectiveness of tax incentives designed to promote economic development.  That’s a positive step:  our 2014 report Budgeting for the Future lists oversight of tax expenditures (tax credits, deductions, and exemptions that reduce state revenue) as one of ten proven, common-sense planning tools that can help states

Categories: Benefits, Poverty

At Least 40 Students With Mumps, Harvard Reports

CommonHealth (WBUR) - Tue, 04/26/2016 - 2:18pm

Harvard University’s campus in Cambridge, Mass. Several students have recently been diagnosed with the mumps. (Elise Amendola/AP)

Harvard University officials report 40 cases of mumps at the school.

Lindsey Baker, spokeswoman for Harvard University Health Services, said six of those cases were reported on Friday.

Baker said health officials at the school are worried there could be an even larger outbreak before commencement next month, because the virus lies dormant for two to three weeks after a person is exposed.

Since the illness is quite contagious, students who have tested positive for mumps are put into isolation for five days, she explained.

At least 12 students are in isolation as of Tuesday for suspected or confirmed infections in the wake of the outbreak.

Categories: Health Care

The Death of an Assassin: The 151st Anniversary of the Capture of John Wilkes Booth

In Custodia Legis - Tue, 04/26/2016 - 9:26am

John Wilkes Booth’s sister recalled that when he was a young man, he met with a fortune teller who told him he was destined to lead a short and troubled life:

Ah, you’ve a bad hand; the lines all cris-cras. It’s full length enough of sorrow. Full of trouble. Trouble in plenty, everywhere I look. They’ll be nothing to you. You’ll die young, and leave many to mourn you, many to love you too, but you’ll be rich, generous, and free with your money. You’re born under an unlucky star. You’ve got in your hand a thundering crowd of enemies—not one friend—you’ll make a bad end, and have plenty to love you afterwards. You’ll have a fast life—short, but grand one. Now young sir, I’ve never seen a worse hand, and I wish I hadn’t seen it, but every word I’ve told is true by the signs. You’d best turn a missionary or a priest and try to escape it.

John Wilkes Booth. Photograph by Alexander Gardner (1865). Library of Congress Prints and Photographs Division, http://hdl.loc.gov/loc.pnp/ppmsca.19233

By fate or coincidence, on April 26th, 1865 John Wilkes Booth met his death at the age of twenty-six. After twelve days on the run with co-conspirator David Herold, Booth found himself surrounded by the 16th New York Cavalry and detectives Baker and Conger at Richard Garrett’s Farm near Port Royal, Virginia. Booth was sleeping, but was alerted to the approaching soldiers by the barking of Garrett’s dogs. He tried to escape, but the Garretts had locked the barn from the outside, fearing Booth and Herold might make off with their horses in the middle of the night. After a heated interrogation of the family’s patriarch, Richard Garrett, who insisted that the men had fled into the woods, the soldiers turned to question his son, John. John Garrett directed them to the tobacco barn. The soldiers demanded that the Garretts seize Booth and Herold’s weapons, threatening to burn their property if they did not comply. John Garrett was directed to unlock and enter the barn, where he told Booth and Herold that they were surrounded and that they should give themselves up. Booth accused John of betraying him and John retreated from the barn.

The soldiers renewed their call for Booth to surrender, threatening to burn the barn, but Booth held his position. David Herold, who mistakenly believed that his auxiliary role in the conspiracy would spare his life, was allowed to emerge from the barn and surrender.  Conger directed Richard Garrett’s sons with placing kindling beside the barn. Booth noticed this and ordered John Garrett away from the barn. Booth then asked for a chance to save his life, offering to settle the matter with a duel. Baker responded that he was ordered to take Booth prisoner, not fight him. Though Booth was greatly outnumbered, Baker, Conger, and Doherty (who led the 16th New York Cavalry) did not want to place the men in any unnecessary danger. Sergeant Boston Corbett repeatedly volunteered to enter the barn and fight Booth, with the idea that the ensuing struggle would cause Booth to discharge his weapons at Corbett, leaving Booth unarmed. The offer was refused, and the Cavalry set fire to the barn. Booth was left with three choices: commit suicide, fight his way out, or resign himself to die inside the blaze. Booth chose to fight. As he made his way to the door, he placed his carbine upon his hip, as though he were bringing it into a firing position. Sergeant Corbett, who had been watching Booth through a gap in the wall of the barn, fired, striking Booth in the neck. Booth was then pulled from the burning barn. The shot left him paralyzed, but it did not immediately kill him—he lingered for approximately three hours on Richard Garrett’s porch. Only able to speak in a whisper, Booth said, “Tell mother, I die for my country.” Booth asked to see his hands, and when they were shown to him, he remarked, “Useless, useless.” Booth died as the sun rose.

Sergt. Boston Corbett, 16th N.Y. Cav., who shot J. Wilkes Booth, April 26, 1865 / Brady, Washington. Photograph by Matthew Brady (1865). Library of Congress Prints and Photographs Division, http://hdl.loc.gov/loc.pnp/ppmsca.40669

The Library of Congress has a page detailing the contents of President Lincoln’s pockets on the night he was assassinated by Booth at Ford’s Theatre. You might also wonder what Booth was carrying when he died at Garrett’s Farm. Given his reputation as a handsome actor, it comes as no surprise that several of the items were photos of women, one of which was Booth’s fiance. He also carried a small pocket calendar that he used as a diary in which he declared that he had “too great a soul to die like a criminal” and asked god to “spare me that and let me die bravely.”

The Cavalry intended to take Booth prisoner so that he could be interrogated to determine if he was part of a larger Confederate conspiracy that might implicate top Confederate officials, including Jefferson Davis. Corbett, claiming his hand had been directed by divine providence, had frustrated that effort. Corbett explained to his commanding officer that he opened fire because he believed Booth was about to emerge from the burning barn and open fire upon his fellow soldiers, and he had only intended to disable Booth, not kill him.  Corbett received a small portion of the reward money allotted for the capture of the Lincoln conspirators and enjoyed a moment in the spotlight that soon faded. He later found work as an assistant doorman for the Kansas State Legislature, until one day, possibly angered over an impious remark,  he drew his revolver in the statehouse. Corbett was arrested and confined to an asylum, but later escaped.

Sources consulted:
John Wilkes Booth: A Sister’s Memoir
The Insane Story of the Guy Who Killed the Guy Who Killed Lincoln
Manhunt: The 12-Day Chase for Lincoln’s Killer

Categories: Research & Litigation

Pages

Subscribe to Mass Legal Services aggregator