Yes. Treat-a-versary is a made-up word. But that's what I'm celebrating today! I have been on IVIG for over 10 years now. That's a long time.
Let's do a little math, shall we?
I've gotten one treatment about every 4 weeks for the past 10 years. That amounts to about 130 treatments. Each treatment is pooled plasma from between 1,000 to 10,000 donations That means, conservatively, I have benefitted from over 130,000 plasma donations. Let's say each plasma donor gives weekly... that means I have benefitted from the generosity of around 250 people.
Amazing. People are amazing. Science is amazing. Medicine is amazing.
Wednesday, July 24, 2013
Wednesday, July 17, 2013
Prescription Costs
We're a little more than halfway through this calendar year. Since the beginning of 2013, I've spent almost $400 on prescriptions. You read that right. Just general maintenance... and I have a great prescription drug plan that allows me to get my IVIG for $30 per month. Most prescriptions are $8 or $15.
Insane.
This means I spend around 1.5% of my income on medications, and I don't have that many. So I guess that puts the ACA's estimate of spending 8% of family income on insurance into perspective for me.
Insane.
This means I spend around 1.5% of my income on medications, and I don't have that many. So I guess that puts the ACA's estimate of spending 8% of family income on insurance into perspective for me.
Tuesday, July 16, 2013
Working on My Fitness
For the first time in a long time, like really really long time, I'm actually able to engage in physical activity without extreme pain and/or feeling like death warmed over afterward. This is a huge development. I think there are a combination of factors playing into this. All good things, but all things that have taken a long time to come to fruition.
First, the plaquenil. Where would I be without it? My fingers are less swollen, to the point I may have to get my college ring re-sized. That's how long my fingers have been sausage-y. They almost look elegant. They're still short, but they aren't so stumpy. My joints hurt less, meaning pain doesn't keep me from trying to work out again tomorrow, or leave me feeling like I may have done permanent damage to myself. I feel actually good and limber after working out, instead of stiff, pained, and unable to move.
Second, I really think the airway clearance is making a huge difference for me. When I started this, I thought it was a little silly, to be honest. Why would I need to do this crap forever? Couldn't I just do it when I am not feeling well? No. The answer now is clearly no. I need to do it. I haven't been able to run without feeling like my lungs were burning since... I really don't remember. We thought it was asthma, which I guess it still could have been, but now I do not even need an inhaler when working out. My bronchioles don't burn. I used to get the feeling I'd run a very long distance after ver short ones. Now, I can go and go and push myself. That is amazing.
What do I mean by go and go? Last night, I ran 4 miles on the elliptical, if you can call that running. My average speed was between 7 and 8 miles an hour. Seriously! I can hardly believe it myself. Granted, it was on the flat setting on the elliptical, but I still think that's something to be proud of, especially since I've only been working out for the past week. I only just got the guts to do it. It makes me want to cry a little because I've been at points when walking a half mile was difficult, even in ideal weather. I've been at points when I dreaded coming to work because of walking from the metro to my office.
This is freedom to me. I can do things I want to do. I can get in better shape. I can be fit. It wasn't long ago when I didn't think that was an option for me in my life, other than trying to do some walking and not lose the function I have. Amazing.
First, the plaquenil. Where would I be without it? My fingers are less swollen, to the point I may have to get my college ring re-sized. That's how long my fingers have been sausage-y. They almost look elegant. They're still short, but they aren't so stumpy. My joints hurt less, meaning pain doesn't keep me from trying to work out again tomorrow, or leave me feeling like I may have done permanent damage to myself. I feel actually good and limber after working out, instead of stiff, pained, and unable to move.
Second, I really think the airway clearance is making a huge difference for me. When I started this, I thought it was a little silly, to be honest. Why would I need to do this crap forever? Couldn't I just do it when I am not feeling well? No. The answer now is clearly no. I need to do it. I haven't been able to run without feeling like my lungs were burning since... I really don't remember. We thought it was asthma, which I guess it still could have been, but now I do not even need an inhaler when working out. My bronchioles don't burn. I used to get the feeling I'd run a very long distance after ver short ones. Now, I can go and go and push myself. That is amazing.
What do I mean by go and go? Last night, I ran 4 miles on the elliptical, if you can call that running. My average speed was between 7 and 8 miles an hour. Seriously! I can hardly believe it myself. Granted, it was on the flat setting on the elliptical, but I still think that's something to be proud of, especially since I've only been working out for the past week. I only just got the guts to do it. It makes me want to cry a little because I've been at points when walking a half mile was difficult, even in ideal weather. I've been at points when I dreaded coming to work because of walking from the metro to my office.
This is freedom to me. I can do things I want to do. I can get in better shape. I can be fit. It wasn't long ago when I didn't think that was an option for me in my life, other than trying to do some walking and not lose the function I have. Amazing.
Monday, July 8, 2013
I Dreamed a Dream
I had a dream about a PI friend last night. He has had a long struggle trying to maintain some semblance of normalcy. We hadn't heard from him in some time, so a friend messaged his family to see if there were any developments in his condition. In my dream, we learned of his passing and it was all very sad. We sent flowers to the funeral and organized fundraisers in his memory. It was very vivid to me and left me feeling very uneasy about his condition in reality.
As it turns out, those fears have some basis. My friend heard from him today and found out he's been diagnosed with IPEX Syndrome. IPEX syndrome is often found much younger, so I'm very concerned for his prognosis. It is a defect in the T cells that leads to total chaos in the immune system. Immune deficiencies, autoimmune problems, ridiculous allergic reactions to almost every food. It makes sense based on his experience, but it's shocking to me that it wasn't figured out sooner.
So now my friend will prepare for the first line treatment for IPEX... a bone marrow transplant. He's very fortunate to have 2 matched donors and will undergo the treatment this fall. I'm thankful at this point for the developments in the transplants and the fact that even a partially successful graft will make a huge difference in his life. I just hope the rest of my dream does not become reality.
As it turns out, those fears have some basis. My friend heard from him today and found out he's been diagnosed with IPEX Syndrome. IPEX syndrome is often found much younger, so I'm very concerned for his prognosis. It is a defect in the T cells that leads to total chaos in the immune system. Immune deficiencies, autoimmune problems, ridiculous allergic reactions to almost every food. It makes sense based on his experience, but it's shocking to me that it wasn't figured out sooner.
So now my friend will prepare for the first line treatment for IPEX... a bone marrow transplant. He's very fortunate to have 2 matched donors and will undergo the treatment this fall. I'm thankful at this point for the developments in the transplants and the fact that even a partially successful graft will make a huge difference in his life. I just hope the rest of my dream does not become reality.
Wednesday, July 3, 2013
Proper Handwashing
I must say, one of the greatest things I saw at the conference was the amount of handwashing. I'm not talking the splish-splash a lot of people do coming out of the restroom. Oh no. This was full contact, soap-and-water, honest-to-goodness excellent handwashing.
To be honest, I'm often grossed out by people's lack of hygiene. I mean, I'm no paragon in this area, but I do wash my hands like a pro. It's so important for the prevention of all sorts of nasty buggers. It's the most effective way to protect yourself from TB, C-Diff and a bajillion other nasties.
So good job, IDF Conference attending women! I saw you wash your hands and wash them well.
For more information on the benefits of proper handwashing, visit the CDC's handwashing website.
To be honest, I'm often grossed out by people's lack of hygiene. I mean, I'm no paragon in this area, but I do wash my hands like a pro. It's so important for the prevention of all sorts of nasty buggers. It's the most effective way to protect yourself from TB, C-Diff and a bajillion other nasties.
So good job, IDF Conference attending women! I saw you wash your hands and wash them well.
For more information on the benefits of proper handwashing, visit the CDC's handwashing website.
Tuesday, July 2, 2013
Conference Wrap-Up
I promised a run down of my experience at the IDF Conference in Baltimore. It was pretty good, as far as information goes, but I always feel like it's the same few sessions over and again. I am usually able to get a few granules of information from the talks, but I always wind up feeling like they are all for the newly diagnosed. And not necessarily the newly diagnosed with certain issues, but the straight up new to the community folks.
For example: I went to a lung disease session, as I was just diagnosed with bronchiectasis, because it was supposed to be about new treatment modalities. Instead, they spent the time talking about common complications, etc. Which is fine, but it's hard not to want a little bit more in-depth conversation about what to expect. I did get some indication that my doctors are doing the right things, which is nice, I suppose.
New this year were some encouraging prognosis statistics... for the 60% of CVID patients without autoimmune complications... so, not me. It's kind of frustrating for them to start trumpeting about new statistics and such when they don't apply to so many of the patients. It's sad, too, because one of the hardest parts of all this is not knowing what to expect. I expect positive things, but sometimes it would be nice to have some sort of reassurance from experts.
I was especially encouraged by the survey results from the survey on women's issues they took recently. It demonstrated that CVID patients can have normal pregnancies, normal children, and all of that. So that was nice.
I have to say, though, sometimes the conference is hard to watch. Why hard to watch? Because it's so poorly done from a logistics standpoint. It was very clear to me, with my meeting planner hat on, that they were trying to save money. How was this so clear? No beverages. That's right. No coffee for breaks, coffee was taken at the end of breakfast, and not enough coffee was provided for all that wanted it after dinner. The Hilton had clearly been given limits for how much to serve and when. Sad, when you consider that most of the population needs pretty consistent levels of hydration not to feel like poo. Why would you not move dinner to a larger venue instead of doing 2 seatings? Why not have more "safe" foods instead of mayo-based salads outdoors in the summer? Why were foods not marked for allergens in a community with high levels of allergies? Eating anything but meat-laden things would have been difficult, so I guess it's good I'm not a vegetarian, vegan, or gluten free. YIKES!
Next conference is in New Orleans. I have now fully learned my lesson and will make certain to bring my own food to the next one, or have some brought in, along with as much liquid as I can reasonably carry.
For example: I went to a lung disease session, as I was just diagnosed with bronchiectasis, because it was supposed to be about new treatment modalities. Instead, they spent the time talking about common complications, etc. Which is fine, but it's hard not to want a little bit more in-depth conversation about what to expect. I did get some indication that my doctors are doing the right things, which is nice, I suppose.
New this year were some encouraging prognosis statistics... for the 60% of CVID patients without autoimmune complications... so, not me. It's kind of frustrating for them to start trumpeting about new statistics and such when they don't apply to so many of the patients. It's sad, too, because one of the hardest parts of all this is not knowing what to expect. I expect positive things, but sometimes it would be nice to have some sort of reassurance from experts.
I was especially encouraged by the survey results from the survey on women's issues they took recently. It demonstrated that CVID patients can have normal pregnancies, normal children, and all of that. So that was nice.
I have to say, though, sometimes the conference is hard to watch. Why hard to watch? Because it's so poorly done from a logistics standpoint. It was very clear to me, with my meeting planner hat on, that they were trying to save money. How was this so clear? No beverages. That's right. No coffee for breaks, coffee was taken at the end of breakfast, and not enough coffee was provided for all that wanted it after dinner. The Hilton had clearly been given limits for how much to serve and when. Sad, when you consider that most of the population needs pretty consistent levels of hydration not to feel like poo. Why would you not move dinner to a larger venue instead of doing 2 seatings? Why not have more "safe" foods instead of mayo-based salads outdoors in the summer? Why were foods not marked for allergens in a community with high levels of allergies? Eating anything but meat-laden things would have been difficult, so I guess it's good I'm not a vegetarian, vegan, or gluten free. YIKES!
Next conference is in New Orleans. I have now fully learned my lesson and will make certain to bring my own food to the next one, or have some brought in, along with as much liquid as I can reasonably carry.
Monday, July 1, 2013
Reality Bites
I spent the past weekend in Baltimore at the IDF Conference (which I will get into in more detail later) and it was a good time to catch up with friends... at least for the most part. It always leaves me pretty run down, but this time it was an extra special dose of exhaustion.
On Saturday night, for the first night in about a week, I took my sleeping medication. I had a blissful night of sleep, about 10 hours. I woke up feeling pretty good... until I looked at my phone. Three missed calls from people who never call me (they usually text) and a flurry of texts. Uh oh. Come to find out, a friend had to go to the ER on the last evening of the conference. I'm actually surprised more folks don't have to go in, but she was the second (and I think last) that had to go, at least of the deficients I know.
I get up at around 8:30, see all this stuff, hop in the shower, throw my things into my suitcase, then hurry over to the University of Maryland Emergency Department, where they were keeping my friend for observation. I'm really thankful I got over there when I did to help her explain things to doctors, etc, because it's really difficult to explain when benadryl has rendered you nearly unconscious and makes it impossible to focus. I was also able to use some of my lung knowledge gained by looking at scan slides to help explain to the docs what they were seeing with N's scans. That was good.
I was certainly glad to be there to help her out, but it also set off some personal alarms with me. Perhaps my own fears of traveling alone are more warranted than I had previously thought. It's a little scary to see someone so close to you in age be in such need of assistance. I mean, we were absolutely 100% there to help her, but I wonder what would have happened if it had been me, alone, several hundred miles from home. As much as I would like to think I'm not limited by CVID, I really am in some very important ways. This demonstrates more than ever that I need a travel buddy always. I'm grateful that B was there on the other end to help me get my things out of the hotel and checked out and all of that, but I'm really trying to evaluate the plans I have in place and the ease with which my doctors can be contacted. It matters more than I would like.
Thursday, June 27, 2013
Wednesday, June 26, 2013
Funny Things on the Internet...
The internet is a wild and wonderful place. It's downright weird when you have a chronic illness. Especially one that is rare and people like to pretend they have. Also, if it is frequently misdiagnosed. But then, sometimes, there are special gems you see on the internet...
Things like the following:
Things like the following:
I AM SELLING MY SON'S MILD HYPERBARIC CHAMBER TO GET HIM IVIG IF INTERESTED PLEASE MESSAGE ME.
Oh, internet crazy... A hyperbaric chamber is not going to do anything for the immune system. Why are you using it for CVID? Or do you just have an old one lying around that you're trying to sell to pay for your son's treatments? Did you get a chronic case of the bends and need an in-home hyperbaric chamber? I am intrigued... and, obviously, highly amused.
Thursday, May 30, 2013
Just... Stop
A lot of people like to say "Common VARIABLE Immune Deficiency... because it is different with every patient!" It is and it isn't... and here's what I mean:
It's variable not because the presentation is so different (even though it does vary somewhat), but rather in large part because patient experience is so different. I have lung problems. Not all CVID patients do. I don't have GI problems, in large part, but a lot of CVID patients do. Some of us have sinuses that are worse than others, and no one really knows why some of us are so much sicker than others. That I will grant you.
BUT... and this is a BIG BUT...
The diagnostics are pretty straightforward. You do not have CVID if you respond to pneumovax. You do not have CVID if your IgG level is not 2 standard deviations BELOW NORMAL. This is a pretty low number, not just "out of range." Many many people are out of range and have no issues. It must be marked decrease in your serum levels. Ok? Ok. Now, with this reduction in IgG, you must also have reduced (or nonexistent) IgA or IgM. Not low IgG paired with normal IgA and high IgM. That's not CVID. Not. No. It isn't. Just stop. Also stop saying you have hypogammaglobulinemia when you have normal serum levels. Thanks.
I understand diagnostic criteria can change, but this has been standard for like 10 or 15 years. There are tons of folks who decide they have the symptoms (uh, what? You have fatigue? Definitely CVID ermmm no) without having reduced serum immunoglobulins and they respond to vaccine. I'm sorry that you feel crummy, but your feeling crummy is NOT THE SAME as mine. NOT THE SAME AT ALL. Yes, this makes me a little outlandishly ragey, but it has taken a long time to find people who truly understand, because so many people are like "I HAVE THIS" when they don't. You can insist all you like, but that doesn't change your blood chemistry.
I'm not saying you don't necessarily have a Primary Immune Deficiency, but what I'm saying is what you have is NOT what I have. So. In summary... JUST STOP.
It's variable not because the presentation is so different (even though it does vary somewhat), but rather in large part because patient experience is so different. I have lung problems. Not all CVID patients do. I don't have GI problems, in large part, but a lot of CVID patients do. Some of us have sinuses that are worse than others, and no one really knows why some of us are so much sicker than others. That I will grant you.
BUT... and this is a BIG BUT...
The diagnostics are pretty straightforward. You do not have CVID if you respond to pneumovax. You do not have CVID if your IgG level is not 2 standard deviations BELOW NORMAL. This is a pretty low number, not just "out of range." Many many people are out of range and have no issues. It must be marked decrease in your serum levels. Ok? Ok. Now, with this reduction in IgG, you must also have reduced (or nonexistent) IgA or IgM. Not low IgG paired with normal IgA and high IgM. That's not CVID. Not. No. It isn't. Just stop. Also stop saying you have hypogammaglobulinemia when you have normal serum levels. Thanks.
I understand diagnostic criteria can change, but this has been standard for like 10 or 15 years. There are tons of folks who decide they have the symptoms (uh, what? You have fatigue? Definitely CVID ermmm no) without having reduced serum immunoglobulins and they respond to vaccine. I'm sorry that you feel crummy, but your feeling crummy is NOT THE SAME as mine. NOT THE SAME AT ALL. Yes, this makes me a little outlandishly ragey, but it has taken a long time to find people who truly understand, because so many people are like "I HAVE THIS" when they don't. You can insist all you like, but that doesn't change your blood chemistry.
I'm not saying you don't necessarily have a Primary Immune Deficiency, but what I'm saying is what you have is NOT what I have. So. In summary... JUST STOP.
Wednesday, May 29, 2013
Working Hard
No, I didn't forget I had a blog. Life just happened. It's already been a busy time, but it's about to get even more busy. Argh.
I had a tryout for Jeopardy! last week in NYC. It was so much fun! I am exhausted from the trip, but really glad I did it. It's one more thing I never thought I would get to do that I've done now. :-)
Lately, since the second bout of the flu, I can't seem to feel better or get enough rest. Work, even though it is a slow time right now, has become more of a challenge than before. Now I feel like I just want to go home, put something in the microwave and just vegetate. I don't. I make an effort to cook dinner and meet up with people and do things. Sometimes, I wonder why. I just want it to be like it was when I first graduated from college. I was so much better off then. I guess I will be better about this when I get accustomed to new normal. Right now, though, it's crummy.
Sometimes, I wonder if trying so hard is even worth it. Why can't I just fold the cards I was dealt and get new ones? Wouldn't that be nice? I'm tired of pushing. I'm tired of doctors. I'm tired of trying to play normal. I know I shouldn't hold myself to some "ideal" or "normal" that I can't attain, but it is difficult not to. It's hard not to say "well, that person seems to be able to do that just fine, why can't I?" It's hard not to wonder if there is a way to make life easier. There really isn't. And it's not as if I can stand on some street corner and proclaim how awesome it is that I am just able to make it through another week.
Sometimes, I wish more people could see and appreciate how hard it is.
Then my mom sends me this "Honey I love you so much and am proud of the way you work so hard at having a good life. I know it isn't easy." Somehow, it helps.
I had a tryout for Jeopardy! last week in NYC. It was so much fun! I am exhausted from the trip, but really glad I did it. It's one more thing I never thought I would get to do that I've done now. :-)
Lately, since the second bout of the flu, I can't seem to feel better or get enough rest. Work, even though it is a slow time right now, has become more of a challenge than before. Now I feel like I just want to go home, put something in the microwave and just vegetate. I don't. I make an effort to cook dinner and meet up with people and do things. Sometimes, I wonder why. I just want it to be like it was when I first graduated from college. I was so much better off then. I guess I will be better about this when I get accustomed to new normal. Right now, though, it's crummy.
Sometimes, I wonder if trying so hard is even worth it. Why can't I just fold the cards I was dealt and get new ones? Wouldn't that be nice? I'm tired of pushing. I'm tired of doctors. I'm tired of trying to play normal. I know I shouldn't hold myself to some "ideal" or "normal" that I can't attain, but it is difficult not to. It's hard not to say "well, that person seems to be able to do that just fine, why can't I?" It's hard not to wonder if there is a way to make life easier. There really isn't. And it's not as if I can stand on some street corner and proclaim how awesome it is that I am just able to make it through another week.
Sometimes, I wish more people could see and appreciate how hard it is.
Then my mom sends me this "Honey I love you so much and am proud of the way you work so hard at having a good life. I know it isn't easy." Somehow, it helps.
Tuesday, April 30, 2013
Next Steps... Lung Spa Day!
I saw my pulmonologist yesterday. I have been SUPER GOOD AND COMPLIANT with my airway clearance, but I'm still not feeling great. The pulmo thus decided that it is time for me to have a bronchoscopy. I'm not thrilled with the prospect, but it makes sense given my situation. We want to see what's in there and what the best approach will be going forward.
I go in on Thursday morning to have my lungs scoped and basically washed out. I've taken to calling the lavage portion a spa appointment for my lungs. Friends tell me this can be pretty miserable feeling, but that it can help you on the road to recovery and to feeling better in the long run. I am hopeful it is that way with me, so my lungs can get rid of the gunk in them and the airway clearance can help keep them clear.
Not that I really want to have a bronchoscopy or lavage or any of this. Sometimes, we just don't get a choice. Sometimes, we just keep moving down the path because we're supposed to and because, in the end, it's what is best for us. Still, though. This stinks. Another thing to add to my list of surgical procedures. ARGH.
I am quite thankful to have a treatment team that I trust. This is one of those times that I have to remind myself of that. I would rather not need them, but I'm so glad I have them when I do.
I go in on Thursday morning to have my lungs scoped and basically washed out. I've taken to calling the lavage portion a spa appointment for my lungs. Friends tell me this can be pretty miserable feeling, but that it can help you on the road to recovery and to feeling better in the long run. I am hopeful it is that way with me, so my lungs can get rid of the gunk in them and the airway clearance can help keep them clear.
Not that I really want to have a bronchoscopy or lavage or any of this. Sometimes, we just don't get a choice. Sometimes, we just keep moving down the path because we're supposed to and because, in the end, it's what is best for us. Still, though. This stinks. Another thing to add to my list of surgical procedures. ARGH.
I am quite thankful to have a treatment team that I trust. This is one of those times that I have to remind myself of that. I would rather not need them, but I'm so glad I have them when I do.
Thursday, April 11, 2013
Say Hello to My Little Friend...
It's all fine and good... except I got zero training with it. Nothing. I did get an instruction sheet for how to clean it, so I guess I should be grateful for that? Sigh... It's always something. I had to track this sucker down for 2 days trying to make sure I had proper authorization or whatever I needed... and now I get to figure out how to use the darn thing.
Monday, April 8, 2013
65 Roses
No, I don't have Cystic Fibrosis. But! I do get to pretend like I have it and do their airway clearance method with hypertonic saline!
Ok, I'm not necessarily thrilled with adding a 30 minute breathing routine to my day, and I can't exactly say that I'm hopeful at this point. Frankly, I'm not. I feel kind of dejected and hopeless about owning a piece of DURABLE MEDICAL EQUIPMENT. There are reasons I am not on sub-q, and not having medical crap around is one of them. I have to figure out how to maintain sanity while feeling like a "patient" every day.
So we will just focus on the positive aspects of what is going on, leaving my mental health state out of it for the time being. I will sort that out eventually.... BUT! The good news is that this doctor is both aggressive and conservative in very smart ways. We're waiting out the bronchoscopy for another 2 weeks to see if this regimen helps my lungs clear the ball of junk. She thinks it is just mucus at this point, rather than a fungal ball. Also, the extent of the bronchiectasis is limited to the part of my lung where I feel it. That is both disturbing and oddly reassuring. I was hoping that getting rid of the mucus plug would help my lung feel better... but who knows now?
The hypertonic saline is described pretty well by the Cystic Fibrosis Foundation here. Maybe it won't be totally unpleasant or will help me unwind. I kind of doubt it, but I have to do it anyway.
Ok, I'm not necessarily thrilled with adding a 30 minute breathing routine to my day, and I can't exactly say that I'm hopeful at this point. Frankly, I'm not. I feel kind of dejected and hopeless about owning a piece of DURABLE MEDICAL EQUIPMENT. There are reasons I am not on sub-q, and not having medical crap around is one of them. I have to figure out how to maintain sanity while feeling like a "patient" every day.
So we will just focus on the positive aspects of what is going on, leaving my mental health state out of it for the time being. I will sort that out eventually.... BUT! The good news is that this doctor is both aggressive and conservative in very smart ways. We're waiting out the bronchoscopy for another 2 weeks to see if this regimen helps my lungs clear the ball of junk. She thinks it is just mucus at this point, rather than a fungal ball. Also, the extent of the bronchiectasis is limited to the part of my lung where I feel it. That is both disturbing and oddly reassuring. I was hoping that getting rid of the mucus plug would help my lung feel better... but who knows now?
The hypertonic saline is described pretty well by the Cystic Fibrosis Foundation here. Maybe it won't be totally unpleasant or will help me unwind. I kind of doubt it, but I have to do it anyway.
Wednesday, April 3, 2013
The B Word
Sorry I've been bad about updating. There has been a lot going on that has taken a great deal of my brain space.
It's been a rough six weeks since I returned from vacation. My breathing never returned to normal and I feel really run down. At my March infusion, I discussed this with the doctor and we agreed that I should have a high-res CT scan. That scan turned up some reasons for my feeling crummy that I was not even slightly prepared for...
I have the first spots of bronchiectasis in my lungs. That's the B word. The word which scares me more than I can fully express. I know many people who have it and, just from seeing them, I have an idea of where this leads. The saddest part is that my infections have been well-controlled and reduced by proper IG replacement, so there's not any reason I should be getting this. I should be fine. My lungs should not be getting damaged. Yet, here we are. Why? Who knows!?!?! My doctors certainly haven't shared anything enlightening.
Now I must go to a pulmonologist to get further evaluation, to include investigating the "opacity" in my lung... aka what could be a fungal ball. I've had fungus and yuck in there before, and I've had a bronchoscopy before, but this time I'm really frightened and tempted to just ignore it as long as possible. As it turns out, the medical establishment is with me on that. I called to try to get a doctor's appointment with the pulmonology group I (and my PCP and my rheum) think is most qualified to treat me. I had a particular doctor in mind, so I called. They didn't want to get me in until May 1, and not with the doctor I wanted to see....
Enter my beloved primary medical group. She talked to them and let them know my situation... They will be calling to schedule me ASAP. I feel much better since she seems to be taking me seriously and doing her best to help me as she can.
The immunologist, on the other hand, is making me feel like I'm crazy right now. I know that's not the intent, but that's the result. Telling me that I just "didn't get along" with the last pulmonologist makes me realize that he really wasn't paying attention when I told him what happened and when I cried in his office. I definitely will not be using his recommendation of another "nice guy" pulmonologist. Especially since my primary cautioned me against using that doctor specifically and the rheumatologist cautioned me against his practice generally.
I hope to get in some time in the next week or two so I can find out what is going on and get whatever testing needs to be done. I just want to feel better.
It's been a rough six weeks since I returned from vacation. My breathing never returned to normal and I feel really run down. At my March infusion, I discussed this with the doctor and we agreed that I should have a high-res CT scan. That scan turned up some reasons for my feeling crummy that I was not even slightly prepared for...
I have the first spots of bronchiectasis in my lungs. That's the B word. The word which scares me more than I can fully express. I know many people who have it and, just from seeing them, I have an idea of where this leads. The saddest part is that my infections have been well-controlled and reduced by proper IG replacement, so there's not any reason I should be getting this. I should be fine. My lungs should not be getting damaged. Yet, here we are. Why? Who knows!?!?! My doctors certainly haven't shared anything enlightening.
Now I must go to a pulmonologist to get further evaluation, to include investigating the "opacity" in my lung... aka what could be a fungal ball. I've had fungus and yuck in there before, and I've had a bronchoscopy before, but this time I'm really frightened and tempted to just ignore it as long as possible. As it turns out, the medical establishment is with me on that. I called to try to get a doctor's appointment with the pulmonology group I (and my PCP and my rheum) think is most qualified to treat me. I had a particular doctor in mind, so I called. They didn't want to get me in until May 1, and not with the doctor I wanted to see....
Enter my beloved primary medical group. She talked to them and let them know my situation... They will be calling to schedule me ASAP. I feel much better since she seems to be taking me seriously and doing her best to help me as she can.
The immunologist, on the other hand, is making me feel like I'm crazy right now. I know that's not the intent, but that's the result. Telling me that I just "didn't get along" with the last pulmonologist makes me realize that he really wasn't paying attention when I told him what happened and when I cried in his office. I definitely will not be using his recommendation of another "nice guy" pulmonologist. Especially since my primary cautioned me against using that doctor specifically and the rheumatologist cautioned me against his practice generally.
I hope to get in some time in the next week or two so I can find out what is going on and get whatever testing needs to be done. I just want to feel better.
Wednesday, February 27, 2013
The American Dream
I've been thinking about a lot of future-related things lately. Having friends who are struggling to find their path along with news about the economy and coming sequester is making me somewhat introspective.
What would happen to me if I were furloughed? Not a pretty picture or a thought I really want to have. It could happen to me, though, depending on how the cuts go. Do I find it likely? No. Is it still on my mind occasionally? Absolutely. We work on many federal contracts and I support them. I believe I would be paid out of our reserve funds before I would be furloughed, but there has been no clear pronouncement of that fact. I just have to trust that they'll do the right thing.
Losing that large a chunk of my income would not completely ruin my finances, but it would leave me less able to pay my bills. I already know I would have to cancel services and cut back majorly... probably eat a lot of rice and beans... and it would not be fun. I feel for those people who haven't been as fortunate as I or those who are just starting their careers and face this issue. It's not fun to live paycheck to paycheck and even less fun to lose even a small bit of a check, or to have it delayed.
My own start in the professional world was rough. I did not make enough money to make ends meet or to pay for my medical stuff. It's hard to be healthy when all you can afford is $1 or less per meal because you're paying for so much that you can't help and you can't control.
I keep hearing people talk about the American Dream and how it is the dream that your children will be better off than you are, able to do the things you weren't. I feel very often that my parents' dreams for us have been stunted by the choices of their contemporaries. I don't have the money or the energy to further my education. I would perhaps have the energy if I was able to quit work and just focus on school. I can't. I will never own a home unless I somehow fall into some financial windfall or someone just gives me a house that is near the medical care I need. It's a catch 22. I can't afford (really) to live in a city, but I must not only live in a city but in particular cities to be able to access the care I need. Not to mention having to live here to get good enough health insurance through my employer.
Is this really what we want for ourselves and our future? I'm trying to be a productive member of society, but I have trouble keeping my head above water because my life moves from crisis to crisis because of illness. I'm finally feeling stabilized now and looking at the havoc my various issues (not just health but things like unemployment) have caused and it's frightening to know that I'm one of the lucky ones that are better off. Yikes.
What would happen to me if I were furloughed? Not a pretty picture or a thought I really want to have. It could happen to me, though, depending on how the cuts go. Do I find it likely? No. Is it still on my mind occasionally? Absolutely. We work on many federal contracts and I support them. I believe I would be paid out of our reserve funds before I would be furloughed, but there has been no clear pronouncement of that fact. I just have to trust that they'll do the right thing.
Losing that large a chunk of my income would not completely ruin my finances, but it would leave me less able to pay my bills. I already know I would have to cancel services and cut back majorly... probably eat a lot of rice and beans... and it would not be fun. I feel for those people who haven't been as fortunate as I or those who are just starting their careers and face this issue. It's not fun to live paycheck to paycheck and even less fun to lose even a small bit of a check, or to have it delayed.
My own start in the professional world was rough. I did not make enough money to make ends meet or to pay for my medical stuff. It's hard to be healthy when all you can afford is $1 or less per meal because you're paying for so much that you can't help and you can't control.
I keep hearing people talk about the American Dream and how it is the dream that your children will be better off than you are, able to do the things you weren't. I feel very often that my parents' dreams for us have been stunted by the choices of their contemporaries. I don't have the money or the energy to further my education. I would perhaps have the energy if I was able to quit work and just focus on school. I can't. I will never own a home unless I somehow fall into some financial windfall or someone just gives me a house that is near the medical care I need. It's a catch 22. I can't afford (really) to live in a city, but I must not only live in a city but in particular cities to be able to access the care I need. Not to mention having to live here to get good enough health insurance through my employer.
Is this really what we want for ourselves and our future? I'm trying to be a productive member of society, but I have trouble keeping my head above water because my life moves from crisis to crisis because of illness. I'm finally feeling stabilized now and looking at the havoc my various issues (not just health but things like unemployment) have caused and it's frightening to know that I'm one of the lucky ones that are better off. Yikes.
Sunday, February 17, 2013
Sad and Scary
The past week has been extremely busy for me at work and have been eventful in the PIDD community in the most unfortunate way. I found out that a couple of very different patients passed away. It weighs heavy on my heart in many ways.
The first was a man named Mark. He was a CVID patient like me... and he was doing very well. So well, in fact, that there was no issue with him getting an outpatient surgery. He had the procedure and developed meningitis. This was a well-controlled patient on adequate replacement. That's part of what makes it so scary for me. He died because of a "routine" procedure.
The second was a 12 year old boy named JP. JP actually had an immune deficiency that is considered by some to be less severe than mine. JP also had other complications and issues that he was constantly fighting. It's so scary because his pneumonia started out much the same way my first big sickness did. He was fine and then, suddenly, he wasn't. I am just so struck by how much his family must be hurting right now. I can't imagine losing a child, a sibling... It's got to be amazingly difficult.
Situations like this give me a big case of the "What Ifs." What if I hadn't gotten better? What if my family doctor hadn't been on top of things when I was in middle school? What if I had gotten meningitis after one of my many outpatient procedures? What if my family had to make the decision to remove life support? What if? I am both jarred by these stories and thankful that I'm still here.
The first was a man named Mark. He was a CVID patient like me... and he was doing very well. So well, in fact, that there was no issue with him getting an outpatient surgery. He had the procedure and developed meningitis. This was a well-controlled patient on adequate replacement. That's part of what makes it so scary for me. He died because of a "routine" procedure.
The second was a 12 year old boy named JP. JP actually had an immune deficiency that is considered by some to be less severe than mine. JP also had other complications and issues that he was constantly fighting. It's so scary because his pneumonia started out much the same way my first big sickness did. He was fine and then, suddenly, he wasn't. I am just so struck by how much his family must be hurting right now. I can't imagine losing a child, a sibling... It's got to be amazingly difficult.
Situations like this give me a big case of the "What Ifs." What if I hadn't gotten better? What if my family doctor hadn't been on top of things when I was in middle school? What if I had gotten meningitis after one of my many outpatient procedures? What if my family had to make the decision to remove life support? What if? I am both jarred by these stories and thankful that I'm still here.
Thursday, January 24, 2013
Dear Mister President
President Obama,
Let me start out by saying congratulations on winning a second term. I voted for you both times because of your promise kept on trying to reform the debacle that is the US health care system. It wasn't everything I had hoped it could be, but you did something that many presidents had tried and failed to do, so kudos. Thank you for being so dedicated to making real strides in universal access to care. It's super important.
I'm writing to you to say how disappointed I am. The law does not go far enough. It does not set up a system by which we can buy into the federal health care system. It does not offer adequate improvement to Medicaid, and does too much for Medicare recipients. I'm sure I'm one of the few that would say that, but there are many Medicare recipients who can receive, frankly, way too much care. Care that they don't need. My friends on Medicaid, however, can't access the medications they desperately need that their doctors have prescribed. Breathing medications, medications for GI problems. It is ridiculous that disabled people who are often in most need of competent care are the least likely to be able to access it. That's a huge problem.
Also, this does not solve the issue of qualified medical professionals. Why is there a primary care shortage in this country? I think it's tied to the lack of medical schools, the need for tort reform, and the expense of medical education. Often, the poorest medical students go into the primary care field because they have experienced the real need first hand, but perhaps more middle class students would go that way if it felt in some way manageable. These doctors experience huge demands and little reward for their time. There's no real "doctor paycheck" for them. They work long hours in hopes of being reimbursed a pittance for what they've done. That's why the specialty fields are so packed. You get to have banker's hours, with interesting patients that don't call you at all hours. How nice!
When patients can't get in to see their primary doctors, they rely on urgent care and emergency rooms. Is that really the system we want to build? See your primary doctor for your yearly physical, but when you actually get sick, go see a stranger doctor that has no idea what your history is like. One that does not know you. I understand the purpose of urgent care and the need for emergency medicine, but I think the ER doctors I've met would rather treat real emergencies, rather than patients who waited too long to see their family doctors when they had pneumonia... because they couldn't get an appointment. Ridiculous.
I know you can't fix all of these things, but I would like to see some additions to the ACA that could touch on at least a few of them. Or start making movements in those directions. I know you've got other things to focus on, and I know getting Congress to do anything is impossible, but I really wish we could do something about all these things together.
All the Best,
LRM
Let me start out by saying congratulations on winning a second term. I voted for you both times because of your promise kept on trying to reform the debacle that is the US health care system. It wasn't everything I had hoped it could be, but you did something that many presidents had tried and failed to do, so kudos. Thank you for being so dedicated to making real strides in universal access to care. It's super important.
I'm writing to you to say how disappointed I am. The law does not go far enough. It does not set up a system by which we can buy into the federal health care system. It does not offer adequate improvement to Medicaid, and does too much for Medicare recipients. I'm sure I'm one of the few that would say that, but there are many Medicare recipients who can receive, frankly, way too much care. Care that they don't need. My friends on Medicaid, however, can't access the medications they desperately need that their doctors have prescribed. Breathing medications, medications for GI problems. It is ridiculous that disabled people who are often in most need of competent care are the least likely to be able to access it. That's a huge problem.
Also, this does not solve the issue of qualified medical professionals. Why is there a primary care shortage in this country? I think it's tied to the lack of medical schools, the need for tort reform, and the expense of medical education. Often, the poorest medical students go into the primary care field because they have experienced the real need first hand, but perhaps more middle class students would go that way if it felt in some way manageable. These doctors experience huge demands and little reward for their time. There's no real "doctor paycheck" for them. They work long hours in hopes of being reimbursed a pittance for what they've done. That's why the specialty fields are so packed. You get to have banker's hours, with interesting patients that don't call you at all hours. How nice!
When patients can't get in to see their primary doctors, they rely on urgent care and emergency rooms. Is that really the system we want to build? See your primary doctor for your yearly physical, but when you actually get sick, go see a stranger doctor that has no idea what your history is like. One that does not know you. I understand the purpose of urgent care and the need for emergency medicine, but I think the ER doctors I've met would rather treat real emergencies, rather than patients who waited too long to see their family doctors when they had pneumonia... because they couldn't get an appointment. Ridiculous.
I know you can't fix all of these things, but I would like to see some additions to the ACA that could touch on at least a few of them. Or start making movements in those directions. I know you've got other things to focus on, and I know getting Congress to do anything is impossible, but I really wish we could do something about all these things together.
All the Best,
LRM
Wednesday, January 16, 2013
A Broken Canvas
As often happens, I was contemplating life this morning while in the shower. Many times I come up with nothing more earth shattering than an idea for what to make for dinner. Sometimes, though, my brain gets to the nitty gritty thinking tasks that are easy to avoid.
Why am I sick? Why do I have this life? What if I was dunked in the waters of the Jordan? Why wouldn't that cure me?
For good and numerous reasons, theodicy and the concept that faith is not a shield remains a troubling issue for many people. But for me, it's not about the failure of God to create miracles in my life. It's the triumph of God's love over this imperfect mortal coil.
It's as though God has decided to paint my life across a broken canvas. It has holes, it's not ideal, but, thanks to the other blessings in my life, it's beautiful. Each of our canvases has imperfections. Even the most beautiful and wonderful lives are marred by pain of their own kind. Just because it isn't visible or obvious doesn't mean it's not there.
My dysfunctional body has shaped me into a person that I have begun to love. It's not easy to live here, in this time/place/situation, but I am thankful that I'm here. A hundred years ago, or even more recently, I would have died far before this point. God put me in this time, this place, and in this body. There is a lot to be grateful for, even if my canvas is full of gouges, holes, and blemishes. It's my own beautiful painting.
Why am I sick? Why do I have this life? What if I was dunked in the waters of the Jordan? Why wouldn't that cure me?
For good and numerous reasons, theodicy and the concept that faith is not a shield remains a troubling issue for many people. But for me, it's not about the failure of God to create miracles in my life. It's the triumph of God's love over this imperfect mortal coil.
It's as though God has decided to paint my life across a broken canvas. It has holes, it's not ideal, but, thanks to the other blessings in my life, it's beautiful. Each of our canvases has imperfections. Even the most beautiful and wonderful lives are marred by pain of their own kind. Just because it isn't visible or obvious doesn't mean it's not there.
My dysfunctional body has shaped me into a person that I have begun to love. It's not easy to live here, in this time/place/situation, but I am thankful that I'm here. A hundred years ago, or even more recently, I would have died far before this point. God put me in this time, this place, and in this body. There is a lot to be grateful for, even if my canvas is full of gouges, holes, and blemishes. It's my own beautiful painting.
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