No RSVPs by Thursday and I have other commitments this weekend. SO this Sundays meeting is cancelled.
Go if you like, and if I hear from more than one of you planning to attend, I will let the others know they will not be alone. Otherwise, see you in June!
The meeting today is pretty much a bust. Meaghan and I enjoyed a nice dinner of some pretty good pizza they make on the premises. Tip: Try artichoke and olives!
We sold one Vasculitis Awareness T-Shirt, to Meaghan.
Now, lest you think the month was a waste, we have news.
At the UNM Outpatient Treatment Center (OTC) where they do the chemotherapy infusions, I made an official agreement to supply their patient education center with VF brochures. I left them a stack of 20 to start that I had with me, and I will deliver more in about ten days when we go there again. Let's see how many they go through in that time. I always include a sticker on the back with my local contact information in addition to the national information already printed on the brochures. Let's see if that gets any new people to the meetings.
Now I need to do the same over at Presbyterian. One of the Rheumatology Fellows here is graduating from his fellowship at UNM and may land at Presbyterian, so I will have a built-in connection there.
In other news, almost everything I have heard about Lovelace Rheumatology is bad. Not sure how to proceed, but I am not going to promote them. If any of you have information one way or the other, I welcome your feedback about your doctor.
I welcome your feedback about your doctor regardless. Would you recommend your doctor? Why? Why not? Come on, do tell!
On the other hand, patient anecdotal comments lead me to believe that Albuquerque Rheumatology has at least two excellent doctors. Based on the comments, Dr. Jacqueline Kim Dean and Dr. Leroy Arnold Pacheco. Their patients certainly like them.
The UNM doctors, Dr. Bankhurst, Dr. Sibbitt, and Dr. Johnson are all well respected and even liked. Meaghan certain likes Dr. Sibbitt who has been very responsive to her needs. We are not always happy with the red tape at this university hospital, but we are learning how to navigate the pitfalls. The doctors are great, it is billing and other that cause certain issues.
Next, we met two patients this month at UNM OTC who speak Spanish and one of them speaks no English at all. I was able to pidgin together a reasonable facimile of a conversation, but I do not have the medical terminology in Spanish, so in addition to my picking up a book on Spanish medical jargon, we also need brochures in Spanish language. I will ask VF if such are available, or I will arrange to get what I have translated here. Here in the land of sunshine and enchiladas we have plenty of resources for translation. I already know a professional translator who may be willing to donate his time for this. I will ask. I may also see about getting the best parts of the CNMVF website translated to include Spanish language versions. Anyone out there want to help with this??
In other news, Meaghan is now taking Rituximab. Wish her well and lets hope this lets her get the other meds down. She popped back up to Prenisone 60mg after flaring through March and April. Now deaing with renewed puffyness, and wishing for time to fly a little faster on that score. Tapers are slow...
Karla is busy with the symphony, and I have not heard from her in quite a while, but from her Facebook updates, it seems she is feeling okay lately.
I met a new patient last month, Luanne, who is housebound. I plan to call her in the next couple of days. Along with a couple of other housebound patients who cannot attend meetings. This may lead to some kind of quasi-teleconference meeting... At least that is the idea if I can figure out how to work it.
I also read in the latest monthly VF newsletter, that the VF Information packets are available now. Once I get a look at them, I will start planning to deliver them to local specialty clinics.
In addition to hopefully being a sorely needed source of good information, they are also a great way to introduce myself to the clinic administrators, and managing physicians in order to establish more and better connections to more patients.
Okay, pay attention. There is NO meeting this coming Sunday.
I think for my own peace of mind, I am going to make it a requirement to RSVP by Thursday night for Sunday meetings. I can always meet any individual you is interested in a one on one breakfast or lunch meeting.
Keep that in mind. If you cannot make a monthly meeting but know you will be in town for another reason, please call me up and we can get together for a drink or dessert to catch up.
One day at a time, let's put one foot in front of the other, and the next thing you know, we'll be walking out the door!
: Joseph Carpenter
Email | (505) 255-1366
PO Box 30888, Albuquerque, NM 87190-0888
CSS Parent, Daughter DX March '08
Central NM Chapter - Vasculitis Foundation
http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Thursday, May 21, 2009
Tuesday, May 19, 2009
Reminder: Chapter meeting in two days
There is a chapter meeting this coming Thursday evening at 6PM at the Albuquerque Grill.
There is another chapter meeting tentatively this coming Sunday afternoon at 2PM at the Albuquerque Grill. If you do not RSVP, I may cancel the Sunday meeting. Please take a few moments to do me the courtesy of letting me know.
Details on the Meeting page of the website.
Hope to see you there. I will have two sample 2009 Awareness T-Shirts with me that I can sell to you, and you can order more if you like.
Joseph Carpenter
Email
Parent, daughter with CSS (DX March '08)
Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.
There is another chapter meeting tentatively this coming Sunday afternoon at 2PM at the Albuquerque Grill. If you do not RSVP, I may cancel the Sunday meeting. Please take a few moments to do me the courtesy of letting me know.
Details on the Meeting page of the website.
Hope to see you there. I will have two sample 2009 Awareness T-Shirts with me that I can sell to you, and you can order more if you like.
Joseph Carpenter
Parent, daughter with CSS (DX March '08)
Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.
Saturday, May 16, 2009
Rituximab infusion - The next day
Meaghan was given an infusion of Rituximab yesterday. Well, the infusion day was a it of a roller coaster ride, but ended up a success.
For about a month, Meaghan and I both suffered a quiet anxiety while anticipating the infusion with great hope and great fear. The potential positive results means that other medications with some nasty side effects can be tapered down to lower levels.
On the other hand, the potential reactions to Rituximab ranged from nothing to sudden death. How is that for a range of options? Anyway, Meaghan experienced a fairly serious asthmatic reaction, which is to say she found it difficult to breathe. It is a pure statement of her condition that this is nothing we have not dealt with before.
One nebulizer breathing treatment with a medication called Albuterol cleared up her airways and after a bout an hours delay, she was able to complete the infusion. With the delays, she was in hospital over twelve hours for what was supposed to be a six hour infusion. But it is done now.
We are very appreciative that three nurses and two doctors who stayed late last night. The hospital was literally locked up when we left so we had to walk around the outside of the building to get to the parking garage. Then the elevator in the parking garage was broken so I hiked up to the 4th floor to get the truck. It was as if the powers that be did not want her to leave.
So, what about this morning?
I awoke to the sound of Meaghan singing in the shower. Yeah... singing.
She reported some pain at the injection site last night, but this morning it was all clear.
She had that asthmatic reaction during the infusion, but this morning her peak flow was 800. (Her normal daily is 700-750.)
Meaghan reported no pain and she was very excited.
Partly that could be the 60mg of Prednisone kicking in. She has been on that dose for several days now.
Partly that could be the fact that she got to attend the championship game for the State HS Baseball. She is the team manager for her school.
(I must interject here that her team did in fact win the State Championship. So, how many sixteen year old girls do YOU know who have earned a pin for their letter jacket as state champions in boys baseball?)
Meaghan had been prepared to miss the game, but the doctors all say, “Go with how you are feeling,” and she felt very good today.
Partly, and probably mostly, her positive outlook today could be attributed to the successful completion of this infusion. It is like a great weight was lifted off her shoulders. Last night, she even spoke to me of things related to the future, which is a topic I am not even sure she is conscious that she has avoided lately. The vasculitis flare makes a patient wonder if there will be a future, and if so, then will the quality of life be worth getting there? Now Meaghan seems willing again to look forward and that is very very good...
Rituximab has garnered successful results for many CSS patients. We have been hearing about it for a year now when we met other CSSers in June 2008 who were had participated in the clinical trials. They all seemed to love it. One went so far as to threaten bodily harm to any one who tries to take it away. Compared to chemotherapy and corticosteroids, these biologicals are a dream medicine. They are genetically engineered substances that target specific cells in the body and create a specific effect. It really is next generation stuff.
But like anything new, there is that big question mark about long term prognosis.
After the second treatment in two weeks, Meaghan will have a gap of 4-6 months between treatments. You know when it is time to take another dose because your vasculitis symptoms start to return, But she should be able to expect at least three months of improved condition. That is a merry break from daily pills and weekly injections. Oh, the pills and injections will continue for now, but there is a good chance she may be able to taper them down to a less harmful level.
Take Prednisone for example, there are many side effects, and long term use is almost as bad as the disease it acts to cure. The stuff tastes nasty, and puts your brain literally, “on steroids.” Those commercials that are out now about sports are mostly aimed at anabolic steroids, but the effect of corticosteroids is also a double edged sword. They do so much good they are referred to as miracle cures, and they can do so much harm that they are truly a damned if you do, damned if you don’t sort of deal.
So, Meaghan is feeling great today. That is what matters right now.
Tomorrow is another day. We will deal with it when it gets here.
: Joseph
For about a month, Meaghan and I both suffered a quiet anxiety while anticipating the infusion with great hope and great fear. The potential positive results means that other medications with some nasty side effects can be tapered down to lower levels.
On the other hand, the potential reactions to Rituximab ranged from nothing to sudden death. How is that for a range of options? Anyway, Meaghan experienced a fairly serious asthmatic reaction, which is to say she found it difficult to breathe. It is a pure statement of her condition that this is nothing we have not dealt with before.
One nebulizer breathing treatment with a medication called Albuterol cleared up her airways and after a bout an hours delay, she was able to complete the infusion. With the delays, she was in hospital over twelve hours for what was supposed to be a six hour infusion. But it is done now.
We are very appreciative that three nurses and two doctors who stayed late last night. The hospital was literally locked up when we left so we had to walk around the outside of the building to get to the parking garage. Then the elevator in the parking garage was broken so I hiked up to the 4th floor to get the truck. It was as if the powers that be did not want her to leave.
So, what about this morning?
I awoke to the sound of Meaghan singing in the shower. Yeah... singing.
She reported some pain at the injection site last night, but this morning it was all clear.
She had that asthmatic reaction during the infusion, but this morning her peak flow was 800. (Her normal daily is 700-750.)
Meaghan reported no pain and she was very excited.
Partly that could be the 60mg of Prednisone kicking in. She has been on that dose for several days now.
Partly that could be the fact that she got to attend the championship game for the State HS Baseball. She is the team manager for her school.
(I must interject here that her team did in fact win the State Championship. So, how many sixteen year old girls do YOU know who have earned a pin for their letter jacket as state champions in boys baseball?)
Meaghan had been prepared to miss the game, but the doctors all say, “Go with how you are feeling,” and she felt very good today.
Partly, and probably mostly, her positive outlook today could be attributed to the successful completion of this infusion. It is like a great weight was lifted off her shoulders. Last night, she even spoke to me of things related to the future, which is a topic I am not even sure she is conscious that she has avoided lately. The vasculitis flare makes a patient wonder if there will be a future, and if so, then will the quality of life be worth getting there? Now Meaghan seems willing again to look forward and that is very very good...
Rituximab has garnered successful results for many CSS patients. We have been hearing about it for a year now when we met other CSSers in June 2008 who were had participated in the clinical trials. They all seemed to love it. One went so far as to threaten bodily harm to any one who tries to take it away. Compared to chemotherapy and corticosteroids, these biologicals are a dream medicine. They are genetically engineered substances that target specific cells in the body and create a specific effect. It really is next generation stuff.
But like anything new, there is that big question mark about long term prognosis.
After the second treatment in two weeks, Meaghan will have a gap of 4-6 months between treatments. You know when it is time to take another dose because your vasculitis symptoms start to return, But she should be able to expect at least three months of improved condition. That is a merry break from daily pills and weekly injections. Oh, the pills and injections will continue for now, but there is a good chance she may be able to taper them down to a less harmful level.
Take Prednisone for example, there are many side effects, and long term use is almost as bad as the disease it acts to cure. The stuff tastes nasty, and puts your brain literally, “on steroids.” Those commercials that are out now about sports are mostly aimed at anabolic steroids, but the effect of corticosteroids is also a double edged sword. They do so much good they are referred to as miracle cures, and they can do so much harm that they are truly a damned if you do, damned if you don’t sort of deal.
So, Meaghan is feeling great today. That is what matters right now.
Tomorrow is another day. We will deal with it when it gets here.
: Joseph
Wednesday, May 13, 2009
Perspective on death and illness
Let me talk about death.
She might die on Friday when she gets her first infusion of Rituximab. Death is one of the known side effects. No kidding. It is rare, but it puts me in mind of serious thoughts.
Women are the statistical majority of autoimmune patients. Thus it seems a dark irony that women are in a slightly higher risk category for death by side effect of this medication. Perhaps it is par for the course. Would I feel this way if it were me who had to face the needle on Friday? What are the actual odds of a bad reaction? Does it even matter? Whether it is one in ten billion odds or whatever, still has the important part... the one. Which one is she? Is she the one?
Swinging the pendulum of fate... She might die, or she might come out with an improved condition. That much has been true since the day she was born.
So... How do I feel about that? I mean about my daughter maybe dying?
Numb.
Just bleeping numb.
Stuck in between hope and fear. Leaves me feeling a quiet calm akin to feeling nothing. Is this a good thing? It certainly makes it easier to function. Like being in the eye of the storm. Chaos rules all around, but here -- in the center -- it is possible to remain calm... How does that work anyway?
Meaghan has been flaring off and on most of this Spring. It is her first vasculitis flare since the diagnosis, so she and I did not know how to recognize it at first. Just the usual never ending daily wondering about little perks or drops in this symptom or that symptom, and wondering how and if this or that might be related to vasculitis. Is this just some "normal" symptom? Is that...?
What is a "normal" symptom when anything and everything might or might not mean something in relation to the vasculitis? Plus, when the question: "What does it mean doctor?" is met with --- Silence --- because the doctors are also trying to figure this stuff out. Talk about jumping at shadows! Chronic illness is really very complex.
Meaghan has to deal with this condition largely herself, but never alone. Like every other life skill, managing her condition is something only she can do well. As her parent I am always there, but I also encourage her to take the lead as much as she can to prepare for the someday when I am not there to help her.
She is learning that if you stick around long enough you get to learn how to discern the significant symptoms from the non-remarkable ones after some gaining experience on the roller coaster ride to vasculitis hell. And there is much good and bad advice alone the way, even from the initiated.
So, back to my topic... I have come to grips with the possibility that my child could die at almost any time, or with good luck and good treatment she could live to be a hundred years old. This freaky uncertain existence gives me perspective on life that I might only have approached in a purely academic sense prior to this past year. Eyes open instead of eyes shut. Knowing anything can happen, at any time, so why worry? But I do worry anyway. Can't help it.
She is driving a car now, and could get smashed to bits by a cement truck on the way home from school, so what is the difference? In fact a car accident is possibly more statistically likely than anything else she is dealing with.
She might even die in her sleep if her cat does not stop sleeping on her face. Just kidding... probably.
So, you might expect her to stay in bed all day and never go out. Right?
She has had quite a few of those sorts of day. They are not fun.
Now, let me talk about illness.
Chronic illness I mean. Not the regular kind where people, "get sick then get well again with a pill." That does not count here. Whether it is the flu or any other acute condition... no matter. Go cry to someone else who will listen to you whine about being sick for a day or a week. Chronically ill people typically do not complain as much, because they know what it means to be really and truly ill. You are sick for a lifetime.
Chronic illness is a 24 hours per day, 365 days per year, ordeal. It is something you survive more than get over, because the entire point of it being called "chronic" is there is no cure. Moreover, it is not simple to diagnose or treat. You don't "get better" in the same way other people get better from an acute illness.
Wishing for remission is like wishing a deadly killer wolf which has been raiding your farm will go raid the neighboring valley farms for a while. You have some nights free of tyranny, but you always know that wolf can come back. So you must remain vigilant.
Acute patients take a pill, and maybe sleep-in for a day or three, then they get better. Chronic patients just have good days, and bad days. More accurately, you have the morning you can tolerate, and the afternoon where you wish you could disconnect your nervous system from your conscious mind, and the next day it might happen in reverse. There are good or bad periods in each and every day. It never ends.
It is like riding the roller coaster to hell, but of course the fear, uncertainty and doubt will torture you on the way there. Not to mention the pain. And to make things really interesting, let's take the whole family along for the ride so they can watch you suffer.
As a parent and caregiver I do not get to take my babies' pain away. I do not get to make it all better with a kiss. I have to stand by, mostly helpless, while she suffers. It really really sucks. So I often talk about this in terms of WE. We are a team, and We are suffering this illness, though do not think for a second that I forget she is the one with the actual disease. Still...
We are brave. We are strong. We are hopeful. We are so many other euphemistic things that it is tedious to even list them now. But We keep going. She keeps going, and I keep pushing her, picking her up, and letting her cry when the feelings of anger, despair, and literal pain and agony get to be too much for her to hold her emotions inside.
And I try like crazy not to let my emotional baggage leak out on her. I fail at that, by the way, more often than I care to acknowledge. But We keep going.
People on the outside never understand what these patients go through. Those of us who are close enough to mostly get it, still have this sure knowledge that we really have no idea, and never will... We caregivers do what we can to get into it, but mainly MUST maintain some distance to preserve our own "non-Prednisone inflamed" emotional reserves so we can be there to support the patient when our chronically ill loved ones feel like giving up. We have to keep going too.
So, I say again... You might expect her to stay in bed all day and never go out. Right?
She has friends and family who love and even adore her.
She is doing more than well in school, and excels above average at most of her subjects. This at a school full of very bright kids. She is respected by her teachers and by the peers who matter.
Before asthma stole her wind, and then peripheral neuropathy wrecked her foot, she had the pleasure to participate in sports and saw success as a starting athlete who played most of every game because of her valuable contributions to the team.
She has participated in arts and music. She spent several summers as a camp counselor. She has been involved with Junior Civitan, Model UN and Mock Trial. She is one of the editors of the school poetry magazine and is now working to found a new school publication for best student essays.
She is one of the 2009 Make-A-Wish recipients, and her first wish is to travel to England and visit the original 100 Acre Wood from the Winnie-The-Pooh stories. If international travel is disallowed, then she will journey to Disney World in Florida and have the kind of special access that Disney affords to Wish Kids.
She is going to participate in an EPGY Summer Institutes High School course this year at Stanford University. No small achievement just being accepted, and I have no doubts that she will do very well once she is there.
So yes, in spite of the vasculitis, she is living well.
But even with all that...
Because of the vasculitis, none of the rest of the good parts can be enjoyed fully without some of the shiny being ripped off.
Just ripped off the surface. But you know... it is still mostly shiny if you choose to look at it in just the right light. Just turn it this way, and that way, until you can see the glint...
Perspective, I said... Yeah... This is a hard one.
A few minutes before I started writing this, I saw a mother pushing her invalid son in a wheelchair. He was old enough to be at least in High School, driving, dating, getting jobs, etc. Instead, he was tied in the chair to prevent him falling. He was drooling and yelling like a baby. It was impossible for me to understand what he was saying.
She just wiped his chin, and kept going, answering whatever he was mumbling that she has somehow learned how to decipher. I imagined how she must do EVERYTHING for him....
Just pause there and reflect for a moment on what EVERYTHING must mean for a seventeen year old boy...
... He probably has a bleak future compared to some. Compared to my daughter... and my future is perhaps better compared to this woman who is literally giving her life for her son. (Though in practice that is in a much less literal sense than some would suggest when they use that phrase.) Still, her quality of life has been set aside for his greater good. How much each caregiver sacrifices is highly relative.
That is perspective.
My daughter could be dead.
My daughter's condition could be worse.
These are small concessions to the afflicted, but they are concessions nevertheless. Nobody wants to be told, "Buck up Charlie! It could be worse!" But hey, lets face it, it could be worse.
That is perspective. It actually helps in some small way. I listed some of my daughters accomplishments earlier, and those are no small feats for any healthy person. For someone with autoimmune vasculitis, they are monumental achievements.
Just making it through a year of High School in spite of a great many medical related absences is an accomplishment. She has done that and much more by focusing her efforts. I did not do that. She did that. I am proud of her.
So where is the stone mason? I want to commission a statue. At the unveiling, we will hear the Master of Ceremonies say, "For Perseverance in the face of overwhelming adversity, this statue is dedicated to... Insert the name of your vasculitis patient here."
So, yes. I am thankful for the shiny parts.
And I am worried about what Friday will bring. I hope the Rituximab medication will work as it has in so many others and bring her some relief. I worry that it might not live up to its billing, even though it seems the anecdotal evidence suggests that most CSSers who have taken it report they are happy with the results. We know her doctor will be careful and take appropriate precautions. So we have hope.
Not a totally happy missive, but really just an honest one.
Joseph Carpenter
Email
Parent, daughter with CSS (DX March '08)
Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.
I am faced with the imminent death of my daughter, Meaghan.
She might die on Friday when she gets her first infusion of Rituximab. Death is one of the known side effects. No kidding. It is rare, but it puts me in mind of serious thoughts.
Women are the statistical majority of autoimmune patients. Thus it seems a dark irony that women are in a slightly higher risk category for death by side effect of this medication. Perhaps it is par for the course. Would I feel this way if it were me who had to face the needle on Friday? What are the actual odds of a bad reaction? Does it even matter? Whether it is one in ten billion odds or whatever, still has the important part... the one. Which one is she? Is she the one?
Swinging the pendulum of fate... She might die, or she might come out with an improved condition. That much has been true since the day she was born.
So... How do I feel about that? I mean about my daughter maybe dying?
Numb.
Just bleeping numb.
Stuck in between hope and fear. Leaves me feeling a quiet calm akin to feeling nothing. Is this a good thing? It certainly makes it easier to function. Like being in the eye of the storm. Chaos rules all around, but here -- in the center -- it is possible to remain calm... How does that work anyway?
Given a choice between Hope and Fear, I choose Hope.
Meaghan has been flaring off and on most of this Spring. It is her first vasculitis flare since the diagnosis, so she and I did not know how to recognize it at first. Just the usual never ending daily wondering about little perks or drops in this symptom or that symptom, and wondering how and if this or that might be related to vasculitis. Is this just some "normal" symptom? Is that...?
What is a "normal" symptom when anything and everything might or might not mean something in relation to the vasculitis? Plus, when the question: "What does it mean doctor?" is met with --- Silence --- because the doctors are also trying to figure this stuff out. Talk about jumping at shadows! Chronic illness is really very complex.
Meaghan has to deal with this condition largely herself, but never alone. Like every other life skill, managing her condition is something only she can do well. As her parent I am always there, but I also encourage her to take the lead as much as she can to prepare for the someday when I am not there to help her.
She is learning that if you stick around long enough you get to learn how to discern the significant symptoms from the non-remarkable ones after some gaining experience on the roller coaster ride to vasculitis hell. And there is much good and bad advice alone the way, even from the initiated.
A sidebar...
Okay... So why is there no sanctioned mentor program in the larger vasculitis community? Why not figure out how to get more experienced patients together with those who are new to this so they can share what they know? I mean Shannon Morgan is great -- fantastic in fact -- but is there a larger effort to track down these unknown vasculitis patients and support them? Maybe that is our job, your job, my job. They are our kin if you think of it broadly.
Ahh... You say go to Yahoo and check out CSSISG, Saavy, Wegeners4Parents, VasculitisSurvivors, etc. etc. Good... Good... but what about the one on one approach? What about people who are not on the Internet? How to reach out to them so they know they are not alone?
That is what local chapters like CNMVF are for? Okay, more good... but what about those who cannot come to the meetings and also do not have the Internet? What about the children? What is happening with these people?
So, back to my topic... I have come to grips with the possibility that my child could die at almost any time, or with good luck and good treatment she could live to be a hundred years old. This freaky uncertain existence gives me perspective on life that I might only have approached in a purely academic sense prior to this past year. Eyes open instead of eyes shut. Knowing anything can happen, at any time, so why worry? But I do worry anyway. Can't help it.
She is driving a car now, and could get smashed to bits by a cement truck on the way home from school, so what is the difference? In fact a car accident is possibly more statistically likely than anything else she is dealing with.
She might even die in her sleep if her cat does not stop sleeping on her face. Just kidding... probably.
She will live, or she will die. What really matters is how well she lives while she is here.
So, you might expect her to stay in bed all day and never go out. Right?
She has had quite a few of those sorts of day. They are not fun.
Now, let me talk about illness.
Chronic illness I mean. Not the regular kind where people, "get sick then get well again with a pill." That does not count here. Whether it is the flu or any other acute condition... no matter. Go cry to someone else who will listen to you whine about being sick for a day or a week. Chronically ill people typically do not complain as much, because they know what it means to be really and truly ill. You are sick for a lifetime.
Chronic illness is a 24 hours per day, 365 days per year, ordeal. It is something you survive more than get over, because the entire point of it being called "chronic" is there is no cure. Moreover, it is not simple to diagnose or treat. You don't "get better" in the same way other people get better from an acute illness.
Wishing for remission is like wishing a deadly killer wolf which has been raiding your farm will go raid the neighboring valley farms for a while. You have some nights free of tyranny, but you always know that wolf can come back. So you must remain vigilant.
Acute patients take a pill, and maybe sleep-in for a day or three, then they get better. Chronic patients just have good days, and bad days. More accurately, you have the morning you can tolerate, and the afternoon where you wish you could disconnect your nervous system from your conscious mind, and the next day it might happen in reverse. There are good or bad periods in each and every day. It never ends.
It is like riding the roller coaster to hell, but of course the fear, uncertainty and doubt will torture you on the way there. Not to mention the pain. And to make things really interesting, let's take the whole family along for the ride so they can watch you suffer.
As a parent and caregiver I do not get to take my babies' pain away. I do not get to make it all better with a kiss. I have to stand by, mostly helpless, while she suffers. It really really sucks. So I often talk about this in terms of WE. We are a team, and We are suffering this illness, though do not think for a second that I forget she is the one with the actual disease. Still...
We are brave. We are strong. We are hopeful. We are so many other euphemistic things that it is tedious to even list them now. But We keep going. She keeps going, and I keep pushing her, picking her up, and letting her cry when the feelings of anger, despair, and literal pain and agony get to be too much for her to hold her emotions inside.
And I try like crazy not to let my emotional baggage leak out on her. I fail at that, by the way, more often than I care to acknowledge. But We keep going.
People on the outside never understand what these patients go through. Those of us who are close enough to mostly get it, still have this sure knowledge that we really have no idea, and never will... We caregivers do what we can to get into it, but mainly MUST maintain some distance to preserve our own "non-Prednisone inflamed" emotional reserves so we can be there to support the patient when our chronically ill loved ones feel like giving up. We have to keep going too.
So, I say again... You might expect her to stay in bed all day and never go out. Right?
Let me tell you... In spite of the vasculitis, she is living well.
She has friends and family who love and even adore her.
She is doing more than well in school, and excels above average at most of her subjects. This at a school full of very bright kids. She is respected by her teachers and by the peers who matter.
Before asthma stole her wind, and then peripheral neuropathy wrecked her foot, she had the pleasure to participate in sports and saw success as a starting athlete who played most of every game because of her valuable contributions to the team.
She has participated in arts and music. She spent several summers as a camp counselor. She has been involved with Junior Civitan, Model UN and Mock Trial. She is one of the editors of the school poetry magazine and is now working to found a new school publication for best student essays.
She is one of the 2009 Make-A-Wish recipients, and her first wish is to travel to England and visit the original 100 Acre Wood from the Winnie-The-Pooh stories. If international travel is disallowed, then she will journey to Disney World in Florida and have the kind of special access that Disney affords to Wish Kids.
She is going to participate in an EPGY Summer Institutes High School course this year at Stanford University. No small achievement just being accepted, and I have no doubts that she will do very well once she is there.
So yes, in spite of the vasculitis, she is living well.
But even with all that...
Because of the vasculitis, none of the rest of the good parts can be enjoyed fully without some of the shiny being ripped off.
Just ripped off the surface. But you know... it is still mostly shiny if you choose to look at it in just the right light. Just turn it this way, and that way, until you can see the glint...
Look for the shiny.
Perspective, I said... Yeah... This is a hard one.
A few minutes before I started writing this, I saw a mother pushing her invalid son in a wheelchair. He was old enough to be at least in High School, driving, dating, getting jobs, etc. Instead, he was tied in the chair to prevent him falling. He was drooling and yelling like a baby. It was impossible for me to understand what he was saying.
She just wiped his chin, and kept going, answering whatever he was mumbling that she has somehow learned how to decipher. I imagined how she must do EVERYTHING for him....
Just pause there and reflect for a moment on what EVERYTHING must mean for a seventeen year old boy...
... He probably has a bleak future compared to some. Compared to my daughter... and my future is perhaps better compared to this woman who is literally giving her life for her son. (Though in practice that is in a much less literal sense than some would suggest when they use that phrase.) Still, her quality of life has been set aside for his greater good. How much each caregiver sacrifices is highly relative.
That is perspective.
My daughter could be dead.
My daughter's condition could be worse.
These are small concessions to the afflicted, but they are concessions nevertheless. Nobody wants to be told, "Buck up Charlie! It could be worse!" But hey, lets face it, it could be worse.
That is perspective. It actually helps in some small way. I listed some of my daughters accomplishments earlier, and those are no small feats for any healthy person. For someone with autoimmune vasculitis, they are monumental achievements.
Just making it through a year of High School in spite of a great many medical related absences is an accomplishment. She has done that and much more by focusing her efforts. I did not do that. She did that. I am proud of her.
You have to look for the silver lining. You have to find the shiny parts. It is the only way to keep going.
So where is the stone mason? I want to commission a statue. At the unveiling, we will hear the Master of Ceremonies say, "For Perseverance in the face of overwhelming adversity, this statue is dedicated to... Insert the name of your vasculitis patient here."
So, yes. I am thankful for the shiny parts.
And I am worried about what Friday will bring. I hope the Rituximab medication will work as it has in so many others and bring her some relief. I worry that it might not live up to its billing, even though it seems the anecdotal evidence suggests that most CSSers who have taken it report they are happy with the results. We know her doctor will be careful and take appropriate precautions. So we have hope.
Survival is a matter of maintaining perspective.
Not a totally happy missive, but really just an honest one.
Joseph Carpenter
Parent, daughter with CSS (DX March '08)
Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.
Regeneration of tissue
Sent to me by Carlene Hobbs. News segment highlighting cell regeneration and the future of growing organs from the body's own cells. A medical break though.
This is a pretty compelling reason why everyone, and especially patients with chronic illness and their loved ones, should support medical research in general and stem cell research in particular. Check out the news story from CBS News.
This is a pretty compelling reason why everyone, and especially patients with chronic illness and their loved ones, should support medical research in general and stem cell research in particular. Check out the news story from CBS News.
Wednesday, May 6, 2009
Vertigo, Imbalance, Dizziness resources
Vestibular Disorders Association | Vertigo, Imbalance, Dizziness resources - Home
http://www.vestibular.org/index.php
"Vestibular (inner ear balance) disorders
Vestibular disorders can cause dizziness, vertigo, imbalance, problems with hearing, nausea, fatigue, anxiety, concentration, and other symptoms. They can deeply affect a person's day-to-day functioning, ability to work, social relationships, and quality of life."
http://www.vestibular.org/index.php
"Vestibular (inner ear balance) disorders
Vestibular disorders can cause dizziness, vertigo, imbalance, problems with hearing, nausea, fatigue, anxiety, concentration, and other symptoms. They can deeply affect a person's day-to-day functioning, ability to work, social relationships, and quality of life."
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