Speedy Gonzalez

I am so extremely fortunate to be able to run my IV so fast. Makes it much more manageable. :-)

The Weight

I am naturally a fixer, a people pleaser, and someone who just wants to see other people happy.

That's the worst part of living with PIDD for me. It's not about what I feel or how I think about the dreams I've lost or the life I never had, at least not most of the time. The thing that bothers me more often is seeing those I love suffer. I watch them from afar, wishing there was something, anything, I could do... It is a big deal for me to be able to acknowledge that and try to let some of it go.


Letting it go is not easy for me. A dear friend is in a hospital right now where she should not be, where she should never have been in the first place. Due to what I feel is medical malpractice, she was left with minimal IVIG replacement and no one investigated. None of her doctors were bothered until she contracted several strains of mycobacteria. She will have permanent damage from this infection. IF she survives it. Sure that sounds morbid, but that's where things are right now. My friend's life is on the edge of a knife. She just spent 18 days in a hospital. She was released and re-admitted for severe GI tract problems within 36 hours. This makes me so angry. So unspeakably livid. WHY did none of her doctors investigate protein wasting when she could not hold on to her IG product? WHY?!??!?! Various forms of enteropathy are extremely common among CVID patients. Meanwhile, she's been symptomatic for months (sporadically, but STILL).

So now she's in a hospital fighting to figure out what's going on. Fighting to remain stable. Fighting for her life. Again. It's really not fair to her. There's really nothing I can do to help her. I would rather see her in a large medical center. I would rather see her getting evacuated to the National Institutes of Health. Why don't her doctors see the severity of her case? She shields me from it, but I can tell and I'm hundreds of miles away. Why must their professional hubris stand in the way? Why why WHYYYYYY!??!?!?!

I need to believe in a Christmas miracle. Pray for her. She deserves better.

An Ode to Nasonex and Symbicort

Sorry I've been neglectful, but life has been... intense.

Today's blog post is about my love for my winter regimen. I always forget how much better I feel when I do them once the weather gets cold and dry... I sleep better. I feel more energized. It's amazing.

So this song goes out to Nasonex and Symbicort. My life really would suck without you.

Eyeball Update

Ok, so I haven't been the most compliant when it comes to certain life functions... like getting my eyes checked for hydroxychloroquine retinopathy like I'm supposed to. Part of that is because I tried to find eye doctors I actually liked that were competent and that was easier said than done. One didn't have the machinery, another did a half-way job and had a super crowded, loud waiting room... and made me wait an hour and a half before even getting called back to wait some more for the doctor. I was slightly traumatized by that last one, so I had to summon my courage and find a new opthamologist.

I did! Finally went in yesterday. My eyes are apparently in wonderful shape. No issues at all. Everything normal. HA! That's a phrase rarely associated with anything in my medical sphere. I'm proud of myself for putting on my big girl pants and going.

This doctor made me sit and look into a machine for what seemed like forever to check my field of vision. Then she tested my eye pressure and did an examination of my retina and my macula to ensure that there were no complications or signs of retinopathy. ALL CLEAR! Now I have a follow up in 6 months that I certainly intend to keep. Yay for new doctors actually being competent and pleasant.

My Achy-not-so-breaky Heart

So my heart issues discussed previously are all related to premature ventricular contraction.

I don't need medication for it.

I can apparently live with it, as it isn't dangerous.

But it IS annoying. If it doesn't improve, I may need to go on meds just for my own sanity.

Goodbye, Little Friend...

... AND GOOD RIDDANCE! That thing got so annoying by the end. I still think it is an amazing device, but I'm sure glad not to be wearing one anymore. I accidentally miscounted days and took it off after 13 days, but I'm pretty sure that will be ok.

I am not so much looking forward to the next steps in the process or trying to go get a chest xray now that the doodad is gone.

I really don't want to have a stress test. I don't want an echo. Don't want, but have to. HARUMPH.

Flu Vaccine Made Me Sick!

Ok. No. No it did not. That's not how the flu vaccine works. You can't get sick from the dead virus. You can have some discomfort and such, but it did not give you the sinus infection or whatever you think it gave you. I have just seen too many folks on my facebook and twitter feeds talking about how their flu shot MADE them sick. They report it on the news as though these subjective stories are fact. Unless you have the flu strain that they shot into you, you definitely didn't get it from the flu shot.

There is loads of scientific research that backs me up in my assertion. There is zero credible evidence that supports your "flu vaccine made me sick" argument. Sure, you might get a fever or something, but that means the vaccine is actually working. Your immune system is pumping up to learn about the new buggies your doctor injected. Isn't that cool? I can answer that for you. It definitely is.

I understand that some people have a harder time with vaccines. Some people have allergies. The allergy folks get a pass from me, actually. Don't get a flu shot if you are allergic to its components. Otherwise, even if you get a mild reaction, get a flu shot. You'll protect yourself and those around you. While you're at it, throw in a Dtap if you haven't had one recently. Especially if you know/love/are around children or the immune compromised. Whooping cough is no joke and the numbers are on the rise.

Anyway, back to the flu vaccine. Where do you get the flu vaccine? Doctor's offices. Where do sick people go to get medicine? Doctor's offices. Not a coincidence.

Marvels of Modern Medicine

More often than not, I feel like my own medical experiences are somewhat miraculous. 100 years ago, the first pneumonia I had in 8th grade probably would have killed me. If that didn't, the pneumonia at 19 certainly would have. Or perhaps one of the numerous infections I'd had before that were treated with antibiotics. There are a million and one ways nature (and, perhaps, Darwin) could have taken its course. I mean, I don't make antibodies. My body doesn't do a very good job of fighting for itself... Yet here I am, living a full and relatively healthy life. Amazing.

Recently, I have been reading some news articles that speak to the miracles achieved by the application of science in medicine. These things range from the simple, like using vinegar to help find pre-cancerous cervical lesions in places where PAP smears are difficult, to developing oxygen foam to help in critical medical situations. It is truly wondrous to me.

I am so thankful for all the medical pioneers out there. For all the doctors who learn about and use these treatments for their patients. For all the nurses who are dedicated to the best patient outcomes. I know I would not be here without them and without the pioneers who developed the treatments that have saved my life and returned quality of life to me. I am eternally grateful.

Say Hello To My Little Friend...

I went to my PCP's PA because I feel cruddy after exercise. Like super cruddy, not out of shape crap, but something isn't right. It didn't fell like asthma, didn't feel like an infection, didn't feel like anything I've experienced previously. Just felt really strange...

The doctor did an EKG, which revealed some abnormalities with my heart rhythm. This could be caused by one pacemaker being weak and another one taking up for it, it could just be the position of my heart in my chest making the test funny, or it could be something else entirely. We determined the best next step would be the cardiologist, especially given my status as a complicated patient. She had her admins call for me and make my appointment. Yeehaw.

I didn't even know the cardiologist's name, which, as it happens, is the same name as an ex of mine. I find that sort of disturbing and amusing at the same time. His manner disarmed me and reassured me. He took the time to look at my case "on paper" to see if there was anything that jumped out at him. He listened to me and encouraged me to share symptoms, even when describing them proved difficult. Then... He put this thing on me:

Hello, cybernetic organism!

This Zio Patch will be on my chest for about 2 weeks. Sounds like great fun, right? I can't tell you how I'm brimming with excitement at having to find ways to wear high necklines to avoid questions. Super fun! He set me up with some other testing in early October, so I won't know anything until at least then. I just hope they find something and that something is easily fixed. Blargh.

If you're reading this, it's because you pay attention to my blog. I don't necessarily feel like talking about this, so please don't ask if I know anything. That only adds to my stress and I do not want to talk about it right now. Trust me, you'll know if it is something important. Right now, as far as I am concerned, this is just another "ologist" in the mix.

Accidental Support for the Chronic Disease Community

I really hate the political climate in this country. Sometimes more than others. Right now, I feel like screaming. Mitt Romney came out in support of those with pre-existing conditions on a Sunday news program, only to have it walked back by his handlers. Twice.

I believe that Mr. Romney really does want people with pre-existing conditions to have access to the insurance market... one that is affordable. His record in Massachusetts reflects this. His campaign tries to distance him from these positions and diminish what they mean for many Americans. It makes no sense to me that people believe that the free market will solve our health costs and will make health care accessible to all Americans. Our system has only made care less affordable and less accessible. To continue the old way would not provide much to anyone but the very healthy. That kind of defeats the purpose, no?

People with simple issues get denied all the time or told they must pay a ridiculous sum because of their knee injury decades ago or a BMI that is too high. I guess, all things equal, if we had control of our health, it would make sense. But there are many people with many conditions who do not have much, if any, control of how sick they get. I don't know why this is such a mystery. It's not fair that those people who, through no fault of their own, have health conditions that preclude them from getting insurance. These people die. I don't think that's what Jefferson had in mind when he wrote "Life, Liberty, and the Pursuit of Happiness."

Things I DO Believe

Talking to medical nonbelievers is astonishing to me. I don't understand why or how there would be a vast conspiracy by all doctors to make you sicker. It just doesn't make sense, but people insist on the veracity of their belief in this.

I believe wholeheartedly that the majority of the medical profession really does want to help. They really do want people to feel better. I think when doctors suggest certain courses of action or drugs or exercise or whatever, they really are suggesting what they think will lead you to the longest and best possible life. Quality of life certainly plays a role here.

I also believe there is some major conflict of interest on the part of some physicians. There are instances of preferential prescription of one brand over another or deciding to trial a patient on an expensive treatment because they have some kind of kickback. I think these instances are exceptional and rare, rather than some sort of conspiratorial collusion between doctors and the pharmaceutical industry. In fact, I would be willing to wager that most doctors would rather just be able to give their patients the medicines they needed without regard to cost. I have heard stories of doctors purchasing medicines for their patients to help with conditions like asthma to ensure that the patients need to see them less.

I believe in our medical system. I believe in its ability to change and adapt to new treatments, new ideas, and new methods. It seems to me that when we get stuck in "the way things have always been," we wind up with worse outcomes and more issues. I much prefer when our system tries to go with the state of the art or tries to forge a new state of the art. I think a lot of this will become even more important as the number of hospital-borne infections increases and antibiotic resistance grows. Doctors and hospitals will have to innovate for the sake of their patients.

I really don't understand how someone can truly believe that the medical establishment has nothing for them. Even a "hey, everything looks great, keep doing these healthy things" is SOMETHING. Most often, though, I find the nonbelievers are those who are trying to hide that they don't feel well, or those that fear that the doctor will take them to task on their unhealthy lifestyle. Either way, I think some truths need to be heard.

I Don't Believe

Lately, I have been doing a lot of thinking about recent advancements in medicine, including promising developments in some of the most mysterious diseases, providing lingering hope for people.

I can't help feeling like that will never be me. Any incremental change in the knowledge about the workings of the immune system feels glacial. The current base of knowledge seems sparse at best. If they don't understand the underlying mechanisms, how can they even begin to fix what I never had?

Maybe I've become jaded, but it all just feels so remote and hopeless sometimes. I remind myself to be thankful to have a treatment, as many don't have that. Even if it is a pain, I would rather have it and some semblance of normalcy.

Nightmare: Arm Surgery Edition

Sometimes, reading other people's accounts of their medical ordeals makes me feel better about my own. Call it schadenfreude if you will, but it isn't like I want them to have a bad experience, rather, I fell like I am not alone in my own bad experiences.

My family has had its share of medical nightmares and terrible experiences with physicians. Sometimes, even under the best circumstances things go wrong. My brother was misdiagnosed when he had a torn knee ligament and wound up destroying his meniscus. He opted to have an experimental surgery to replace the meniscus using a donor one. To make a long story short, an internal staph infection took over and cost my brother more tissue and his knee is now worse off than it had been.

When I read this story in the Washington Post, I couldn't help but think of my brother's issues and his continuing journey. There have been many experiences that have taught me to be an informed patient and, much like this man, I read medical literature to learn as much as possible and stay current with what is happening. I want to have more understanding of my doctor so that we can work together on a treatment plan. This seems only reasonable to me. I think more patients would experience better outcomes if they became more invested in their care.

The author also puts forward some interesting statistics and some ideas for implementing changes in the field of patient safety. I wholeheartedly agree that it is absurd that one can get more information on a $30,000 car than they can on open heart surgery. It is wrong and definitely something I hope changes in my lifetime. What if doctors got outcomes ratings like the health department gives to restaurants. Would that C+ rating make the doctors work harder and make patients think twice? I don't know, but I can't help but think it would increase the accountability. Implementation would be a difficult proposition, though, and I can't say I know what would be best for the measures. I'm sure the AMA and other physicians boards can come up with something... I would really like to see that happen. A girl can dream...

Issues Voting

I don't necessarily want this blog to be a political one, but my readers should know how important access to health care is to me on a personal level. I really think it is a human right, and it makes me so sad to see people not be able to have access to the same medical care that I have simply because they were not born in the right situation. I've been extremely fortunate and I know many aren't as lucky as I have been.

As a teenager looking forward to voting for the first time, I never thought I would be a single-issue voter. As a chronically ill person, I find there is no more critical choice I can make. I also find it silly when other chronically ill people or parents of chronically ill children don't see how important it is to actually understand the issues and how important their votes can be to making sure they continue to have access to adequate medical care.

The current GOP platform with regards to health care is pretty straightforward. Turn everyone to the private insurance industry. Reading between the lines, it also reveals a complete lack of concern for the poor, the disabled, those who do not have personal agency. The current plans would curtail Medicaid, which has been a critical help to parents of sick children. It would make sure that single adults like me would just be totally screwed if they couldn't work. It's not fair. It's not right. But somehow, reducing costs by cutting people out of the health care system seems to make sense to these folks. Whatever happened to compassion?

These people seem to think that charities will spring up to help these people. If that was the case, how come there are so many preventable deaths in this country? The lack of access to health care is not something that most people can even begin to comprehend. If they do, they think it only happens in the third world, not here. There are actually very few options for getting help with insurance, copays, deductibles, etc. Somehow, though, this is supposed to magically materialize once the funding is cut. Many of those with power in the GOP party are very wealthy. I don't see a Romney hospital for the poor, despite the fact that he could certainly afford it.

It irks me to no end that these people claim to have America's best interests at heart, but they can't find it in themselves to care for the "least of these" by providing simple access to health care.

Blaming the Fathers

There have been tons of interesting developments in the medical world recently, and several that strike me as important.

First among these is a new study that suggests the future of the human genome is in peril because of the increase in the average age of fathers. After generations of blaming developmental delays on some shortcoming in the mothers, it turns out that it very well could be the father's old sperm that could be to blame.

I find this to be both exciting and frightening at the same time. It speaks to the increase in many genetic issues, including autism and developmental delays, but it also speaks to just how wrong the medical community can be when they lack fundamental understanding.

The New Yorker has a great article about this phenomenon and the possible outcomes here. Definitely very interesting.

Manageable...

I have a feeling that now that I'm actually typing this out, I won't feel this way anymore, but here goes...

I feel very much like I've reached a point of manageability with my medical stuff. I feel stable for the first time in a long, long time. I still get fatigued, I still have pain issues on occasion, but generally I really do feel like I could feel this way for the rest of my life and be fortunate.

I guess coming back from vacation will do that, along with a long stint without antibiotics. This is almost what normal people feel like. It's a good thing.

My feelings of guilt are hard to manage sometimes, though. I have friends who are struggling with this stuff and can't seem to get a firm grip on anything... on treatment plans, on doctors, on which medications to take... It's so complex and it's hard to see friends go through such struggles, especially when I feel pretty good more often than I don't. It's something I often deal with, but I know they don't begrudge my happiness and well-being, so I should respect that and try not to feel guilty. Work in progress, obviously.

Don't get me wrong here, I'm glad to feel good. I'm even more glad that this has given me the opportunity to kind of spread my wings and seek out a new primary doctor. My first visit was great. I should be getting some blood work results this week, so hopefully no surprises there. It's kind of nice to go in for an annual physical and have no real problems to discuss. I'm sure that will change, but for now, I am doing my best to enjoy it.

New Product Coming to Market

I was fortunate enough to be part of an investigational study of a new IVIG drug... and now that drug is coming to market! The results of the study of the drug can be found in the Journal of Allergy and Clinical Immunology.

I really liked the product and may seriously consider switching to it from Gammagard, depending on what Baxter does about ensuring their supply chain. I never want to be without product and I really don't want to have to change products back and forth because companies can't get their acts together. So far, I haven't felt much impact from any Gammagard shortages, but I really don't want to. Perhaps, this new product will be easy to get. I already know I tolerate it well.

It's an exciting day! :-) More competition among producers is a great thing!

Who You Gonna Call?

Having a rare, chronic illness can be distressing at times. People often feel frightened and alone. At first, after diagnosis, the doctor you trust most often can't help you or explain what is going on very well... partially because they don't necessarily understand it all that well. As patients, this is a difficult thing to face, especially when Google is one of the most misleading ways to find information if you don't exactly know what you're looking for.

This is where illness friends come in. I look at the illness communities on Facebook and just think about all the questions people ask. Questions of why or how. Questions of who or when. Questions of what. Distressing symptoms are altogether too common when you have an immune deficiency, so you feel a little silly running to your doctor with them all the time...

That begs the question, then, of who you CAN turn to... Your sick friends. Inevitably, someone somewhere has had or heard of what you have. It is group think at its best. "Hey, sick people. I have a problem. Anyone have any ideas? What should I ask my doctor?" Some people even think they are asking silly or stupid questions, but I've learned that none of the information gained can be taken for granted. I don't know how many times I've explained infusion reactions to doctors... information I learned through trial and error and the experience of others. It would be difficult to properly explain what it means to actually understand what is going on better than the medical professional who is supposed to be helping you. It's a weird world, living on the medical margins. Your best bet is really to be plugged in to a community to help you.

I definitely still need my doctors and nurses, but my sick friends make appointments so much easier and have really improved my quality of life through their generosity of spirit and their generosity of knowledge. Thank goodness for them.

To My Readers

Generally, I use this blog as an outlet for my own personal thoughts and feelings about things I run across on the internet. I refrain from using personal information about others whenever possible to get my point across.

Please understand that if you find something objectionable here, it is my own opinion, my own information, and my own responsibility. If you have an issue with what is posted here, please let me know, either via a comment or another means of communication.

Thank you.

Oh Crap. Alzheimers.

Let's start off by saying I do not begrudge other disease groups access to treatment. I don't wish for people to suffer.

Now that's out of the way, I am really frightened by the prospect of Alzheimer's patients receiving IVIG as a treatment. The therapeutic dosage I've seen online is something like twice as much as the PIDD dose every two weeks, instead of monthly. There are already rumors of shortages and talk that we may see the worst plasma situation since 2005. 2005 was scary. People couldn't get treatment. Doctors could not locate product. Not a good thing. This shortage scare is happening now with (I would approximate) 1 million people using the product, all of them rare diseases. This shortage is happening in an economic slump when there have historically been more plasma donations because people are strapped for cash.

Why else does this concern me? Alzheimer's is a "fashionable" disease. It has name recognition, celebrity boosters, etc. Any development with Alzheimer's is huge news around the world. There are also 5.4 million people with Alzheimer's in the United States. Using two-four times as much product. It is worrisome that the Alzheimer's lobby might get legal protections for their use of IVIG, which would trump mine. We have very few advocates, Alzheimer's has many very powerful ones.

My best hope is that they would develop a monoclonal antibody for Alzheimer's that would target the beta ameloid protein, but that is years of very challenging science down the road. 

IVIG is the only treatment for CVID. There is nothing else even in the pipeline to treat me.

Alea Iacta Est

I signed up with the One Medical Group. So far, it seems like it is extremely straightforward and their online system is great. I have booked an appointment with my preferred PCP for next week. We shall see how it goes, but right now, I'm excited.

One of my most hated of all activities is appointment scheduling for my doctors. This online option is the bomb diggity, at least as far as I am concerned. I can just go in, pull up the appointment calendar, select my chosen doctor and time I want and BAM! Done. All set. No calling and haggling over what is available or trying to figure out if they have an appointment around a certain time. No more trying to explain to the medically illiterate receptionist about what the problem is and why it is urgent. I can just write all of that in the notes field. My appointments are guaranteed to start on time and I'm only asked to arrive 5 minutes early, instead of the usual 30 minutes for first appointments.

I gladly welcome the medical profession into the 20th Century. I certainly hope this is the beginning of a long, beneficial relationship with this practice.

PS - I understand how privileged I am to have access to such a service. I am incredibly grateful.

BRB Getting Cured Now...

There are few things that make me angrier than when people come into facebook groups about my illness and start talking about how they can cure this and fix that through some combination of diet, exercise and/or supplement pills....

The latest is a woman extolling the virtues of a Raw Vegan diet. Ok. I understand vegan diets have their place in this world, but DO NOT tell me that the "medical establishment" wants me to be sick. My doctor would like nothing more than to never have to see me again. I think he'd be the first to tell me about the MIRACLE CURE.... especially if it was so easy. If I had to eat nothing but raw radishes for the rest of my life, I would. I don't like radishes by themselves, either. It isn't for lack of effort that I am sick. Boy, do I wish it was. Oh man, would that ever be nice.

I think the reason it annoys me so much is because it's like these people think I WANT to be sick and I WANT to get IV treatments every month. Let me just tell you how much fun it is to sit in a chair, get poked several times, have refrigerated plasma protein pumped into your veins, and cost the insurance company $10-12k per month. SUPER FUN HAPPY TIMES! Everyone should do it. Uh. No. I wouldn't wish this on my worst enemy. I wouldn't allow someone to do it for me, even if they offered. It is kind of awful. I glaze over it a lot, but it's really terrible and I wouldn't want to put that on someone else. If there was any viable choice for me not having to do this for the rest of my life, I would take it. I would even be willing to participate in dangerous medical trials (depending on the hospital, of course, I'm not completely crazy) if it meant a cure for me or for people I've grown to love through this disease.

I wouldn't trade or change my experience for anything, as I think it has made me a stronger person, but I really would love it if no one had to become stronger in this way. It's not fair, it's not fun, and it's most certainly not a choice.

Rights of Disabled Person > Your Allergy Issue

Imagine this scenario. You are allergic to dogs. You are in need of a service animal. You get a service pig. The pig is just as well-behaved, well-mannered, and well-trained as any seeing eye dog....

You need this animal because you have seizures, you can't turn on lights, you're blind, you have any number of issues and can't function on a day to day basis without help, and your service animal has provided you with a level of independence and freedom you've not had since before your injury, blindness, ever in your life.

This is not a stretch of the imagination. Service animals provide a level of independence and freedom to the people they serve. I applaud the USDOT for making rule changes that allow these valuable animals on board planes. I can't imagine needing such an animal, but I also can't imagine denying these people the right (and it is a legal right under ADA) to bring their animals with them.

As with anything, there will always be naysayers. Why is it that people think their allergies or whatever entitle them to deny other people their legal rights? You can take a benadryl or a claritin or whatever... These animals aren't pets. Not even close. Some people who need service animals wouldn't be able to travel without them. It makes me sad that people would even consider this an issue. Please be compassionate to others and realize that these aren't pets. These are animals who serve.

To Concierge or not to Concierge

I have been thinking for a little bit now about getting a new primary care physician. I LOVE my current PCP, but her office isn't terribly convenient to my work and it can be very difficult to get the appointment time I need. She's completely focused on me when I'm there, though, and she knows me and deals with things... but I sometimes feel something lacking. I really enjoy talking with her, but she's not necessarily proactive in helping me with things and I am not entirely sure she's still a good fit for me.

In comes an offer for an affordable concierge physician service. They have a snappy website. They offer online scheduling for same-day appointments. They have specialists in women's health and complex conditions... and an office that is a 5 minute walk from work. It seems like a good idea, but what if they aren't as good as the current PCP? What if I want to go back? Will she feel betrayed?

I understand this is certainly a first world problem that I am fortunate to have.... and that many people even in the US don't get this kind of choice. But with choice is coming confusion.... What to do?

Dancing in the Streets!

The Affordable Care Act has been upheld by the Supreme Court.

I know some people are all mad about it, but you know what? I DON'T CARE! I AM HAPPY AND EXCITED!

I have seen a lot of different reactions, and it seems like the more people understand the law, the more people support it. This brings my heart joy. It will change health care for the better in this country... It certainly can't make it worse. 

Right Foot: Reconciled

It turns out the foot pain I was having last week was a sprain of the lisfranc ligament (or so the podiatrist thinks). I have been in special tape and a surgical shoe since Thursday. I can take off the tape tomorrow and I CAN'T WAIT! I've been unable to get that foot wet since it was taped. I can't even begin to contemplate how nice it will feel to get the tape off. I'm still in the surgical shoe until at least Thursday. Sexual.

I am so happy to have had a simple problem that seems to be resolving with proper medical attention in a short amount of time. How very refreshing to have something so straightforward.

I hate you, foot

Dear Right Foot,

Why must you be so difficult? I've been so nice to you, and yet you repay me with pain. I just want to walk to my usual places and do my usual things, but you're making this process impossible. I'm totally gimpy. Hopefully, the doctor can see us soon and will fix you right up. Somehow, I fear that this might go on for a bit until we figure it out.

HARUMPH TO YOU, FOOT!

No Love,
LRM

Alien Cancer Dolls

Sorry for the absence. May was crazy-go-nuts.

Back to the business at hand. Mattel has released the images for the "True Hope" dolls. They look like aliens. Don't believe me? Look at the pre-order page. Please tell me how exactly having glamorous looking cancer patients help anyone? We already know how I feel about this, but they're actually worse than I thought they would be. Sad, considering how bad I expected them to be.

Why not make a doll with dark circles and gaunt features or prednisone moon face? Because I guess the idea that someone would ever be unattractive while ill is distasteful and won't sell dolls. It saddens me, because if you are really looking for something that resembles what you see in the mirror, these dolls aren't it. "Why don't I look like the cancer doll?" It's kind of heartbreaking. Why not make a chronic illness doll with removable hair and prednisone moon face, complete with an infusion set? That's a little too real, I guess.

Sick People on NPR

Today the fine folks at NPR posted to their Facebook page asking for people like me to interview for a story about being sick in America. Those of you who read this know pretty well how I cope with being sick and what it takes to do it. This is an important story to tell, even if they don't pick me.

I hope they pick me, though.

A friend who works for an NPR affiliate posted the status on my wall saying she wants to hear me on NPR. I find it oddly reassuring that when my friends think of sick people who would appropriately represent the chronically ill, they think of me. In fact, I am honored. I doubt they will pick me, but I DO have a great radio voice...

Pit Crews and Systems

Making systems work is the great task of my generation of physicians and scientists. But I would go further and say that making systems work — whether in healthcare, education, climate change, making a pathway out of poverty — is the great task of our generation as a whole.” (Atul Gawande)

This particular TED talk is one that speaks to the current crisis in medicine. We have cowboys and mavericks when we need pit crews that work together as a system. It's quite interesting and certainly worth the 20 minutes.

More Awareness...

April is PIDD awareness month. We've discussed this already. I feel like this week is "be aware that you might die of this stuff" week. Or, conversely, "look how lucky you are to be alive with this" week.

2 children I did not know, but were close to others in the community, passed away recently. These kinds of news stories shared by those I know hit close to home for me and remind me how tenuous things can be for those with rare diseases.

Brooke had ataxia telangiectasia and died at age 16, much beloved by everyone who knew her. You can read more about her life here.

Giovanni was born with NEMO. His life inspired people around the world to become bone marrow donors, even though he never found a donor match himself. You can read more about him here.

These are just two of many stories. Some are more hopeful than others, but stories like these are the ones that make me the most sad, but at the same time grateful. Grateful that we had a loving family doc that kept me healthy all those years so I didn't know I had a PIDD. Grateful that I am now able to access world-class care that keeps me well and ensures a good quality of life. Grateful that I am one of the lucky ones. My heart goes out to these families and the many others who never know the name of their child's disorder.

Ain't nobody got time for that...

I might have to use this in the future.

I am the 1%

There's an article I ran across on Facebook examining the statistics of health care spending in the US. Quite an interesting way to look at the spending to try and devise ways to control it, I suppose. That's an admirable goal, but there are some things in the reporting of this story that gave me pause.

Of course people on public health care use more care... Those are the elderly, disabled, and most ill among Americans. That makes a lot of sense to me, but seems to lead to the opportunity for those who oppose universal health care to say "well, if you give it to people they use more." I believe that assertion to be patently false, but that's not really the issue here.

I also found it interesting that the racial divide is certainly not what some folks would lead one to believe. The way that politicians talk, hispanic immigrants are what's costing so much and making our health care system so expensive. Turns out, that's definitely not the case. Sickly older white women are really what costs us so much money. Interesting.

An Aware World

I would be remiss if I didn't mention that April is Primary Immune Deficiencies Awareness Month. Whoop tee doo. Every year I post a bunch about it, every year it's the same. People ignore it because it's not their issue. Ok whatever. That's fine.

This year, I've decided to go with a different thought path. What would the world look like if it were more aware? More specifically, what would the lives of my friends be like if we lived in a world where PIDD wasn't so strange or foreign or scary or... insert your favorite negative adjective here. It's always going to be a life altering diagnosis, but it doesn't have to be a life-ending one.

My friend G would be studying for her PhD in vocal performance and pedagogy. Her coloratura would be known in the opera community as one of staggering power and emotion. She would travel the world, in demand for her pitch perfect interpretation of Rossini. She would draw crowds wherever she went. Her classical albums sell consistently well and she lives quite comfortably. The adoring crowds love her vulnerability and are impressed that she balances her busy career with motherhood and chronic illness.

My friend L would be doing a number of things. What I most see her doing? I think she'd have her own dance studio, where she'd share her love of ballet with students young and old, teaching them the techniques she learned at ABT and Joffrey. The positive and creative atmosphere would inspire her students and attract world-renowned talent for masterclasses in her studio. She would host special performances of her studio's award-winning performances for children from the local hospitals, knowing that, because of her great team of doctors, she was able to live her dreams.

Why are these scenarios not the case? My friends were not diagnosed or treated properly. In some cases, they still aren't. They could have been. It could have been a different world for them. I hope that, someday, little girls like G and L will be able to fulfill their dreams and not feel so limited. I hope that PIDD becomes something that can be more benign and not cause lung damage, ridiculous infections that require a year on antibiotics, and will be something that is more manageable. I want PIDD patients to have full lives. All of them. Not just the lucky ones who are blessed to be diagnosed early or have uncomplicated presentations.

Compliance Milestone!

Today marks 8 weeks of oral medication compliance.

WOO HOO!

Saturday is dinner at Rogue 24... :-)

Choosing Wisely

Today is the day. Choosing Wisely is releasing the lists from physician organizations regarding the "Five Things Physicians and Patients Should Question." As a patient, I question a lot more than these things, especially when it comes to procedures and testing. At some point, you have to be aware enough to realize that there has to be a line drawn somewhere.

One thing I find very interesting is that two of the lists invoke the recent study about sinusitis and antibiotics. I really hope the general public can and will seize on to this idea of waiting to get antibiotics. It will improve outcomes in the long run and help prevent secondary problems like antibiotic resistant strains of bacteria and gastrointestinal infections that can come from antibiotic exposure.

It's also interesting about the timing of difference high tech scans. I think that people are given far too many of these tests because they insist on them. They raise Cain until someone gives in to them and gives them unnecessary testing. I'm all for being thorough, but I believe that people in this country are far too quick to demand more and more intervention for silly things, like the common cold. Even with healthy immune systems, good musculature, solid bones, you won't be healthy all the time. Sometimes, things need to run their course. Obviously, this is different for people with chronic conditions, but I think even in our community we need to consider what is going on.

On Being "Good-Natured"

I got an interesting compliment from my immunologist, Dr. S. At my April treatment he asked me how I stayed so good-natured... How it is that I don't let the many -ologists and such get me down. Well, I don't really have a choice. At least in my reckoning of things, I can either deal with things in a constructive manner or I can wallow and complain. A happy life is not made up of our complaints or our shortcomings...In so many words, you must play the hand you're dealt. My hand just happens to be a little complicated.

This is not to say I'm good at this stuff or have it figured out, because I'll be the first to tell you I could be MUCH better at it. Why has it been so long since I've been to the dentist? I will blame finances, which is only partially true. I just couldn't deal with another regular medical-ish appointment at the times when I've had dental insurance. I'm only just now getting to the point where I can face it and it feels like a huge step for me. It isn't that I want my teeth to rot out of my mouth, I just couldn't overcome the emotional hurdle... until now. I am committed to taking better care of myself, my whole self, so I can be as healthy as possible. It may not be as good as the immune competent folks, but it will be better than what it could be.

When thinking about what makes you have a happy life, it isn't what most people assume. I think that this post gives good insight. It's not about what you have or who you are, but how you choose to react to things and what you choose to hold on to. It's hard to put into practice, but I think, in the end, if you can at least do a majority of these things on a given day, you'll have a much happier existence and can also be "good-natured."

"Wellness Educator"

Aww. My insurance company is so adorable. Calling me incessantly about asthma until I agree to be in their wellness program... At least now the calls are going to be monthly....

Today's callback was from an RN at the company who actually had to have me explain to her the reasons I'm on certain drugs and why I'm not on others.... Really, lady? You've never heard of metformin for PCOS? Uh... ok. You've never heard of an asthma patient whose asthma is secondary and who doesn't want inhaled corticosteroids? Asthma docs who prefer steroid sparing, especially since my asthma is ridiculously well-controlled? I think she asked me 3 times why I'm not on inhaled steroids. "I know they can cause infection complication, but..." There's your answer lady. "I figured that, but I have to ask." Yes, I am sure you do, but you don't have to ask several times.

At least she complimented me on being informed. She was also curious about my having children. WHAT IS IT WITH PEOPLE!??!!? I swear, health professionals are really curious as to whether you will be birthing babies or not. It was kind of strange, but I explained the genetic links, the fact I probably wouldn't pass it on, and the fact that I will be looking into genetic counseling before I decide about having kids. It's kind of an intense conversation to have when she's spent most of the call asking about corticosteroids.

Punk'd

I feel kind of bad.

The poor employees of the insurance company's wellness program that draw the short straw and have to call me really must think they're being punk'd somehow.

This one was pretty spectacular. Keep in mind I have brain fog, so I'm paraphrasing except the outrageous quotes. They're real.

"Is asthma your primary health concern?"
No. More like tertiary.
"Can you tell me what your primary concern is?"
Common Variable Immune Deficiency
"Say that three times fast..."
**sigh**
"Can you repeat that?"
Common... Variable... Immune... Deficiency
"I have never heard of that."
Yeah. It's pretty rare.
"Can you tell me more about it..."

This victim actually wins the prize because she wanted to know more about what I have and why it matters. Good for her, but man. Those first couple reactive comments were not so much fun for me. I was pretty sure I'd made the wrong choice to go forward with the program. She was very nice and tried to understand, so maybe it will be good after all.

I can't say I'm looking forward to the "nurse calls you" portion of this adventure, though.

Feeling Normal

I got a moment to speak with a friend who has breast cancer. She is through chemo, but currently undergoing radiation. I asked her what I often ask sick people... whether she gets to feel "normal" yet. She judged this to be a perceptive question, answered, and we closed our conversation... but I was still thinking...

Why is it that no one has inquired about this friend's self care? Mental health? General feeling of well-being? I mean, I know being sick is challenging, but I think we all get that. What we as a culture often fail to understand or embrace is talking to people about how they are emotionally. Do you get to feel any normalcy seems like a perfectly honest question to me, and one that perhaps we should ask more often. It gets to the heart of what a person needs to feel more calm, more sane, and, yes, more normal.

You get a lot of really honest moments with questions of normalcy. Sometimes, it even leads to tangible things you can do to help. In this case, my friend has done a great job seeking out the support she needs among other breast cancer survivors in a support group. She said that she now sees that what she feels is on SOMEONE's scale of normal, even if it doesn't register for the larger part of the population. Someone has validated her feelings, her experience, her emotions. This is so important for anyone who has a chronic illness... This is the best way to feel less alone.

Have IG, Will Travel

Personally, I can't see giving myself sub-q and turning my once-monthly 3 hours office visit into a 3 hour weekly ordeal. That being said, there's something nice about the flexibility offered by subcutaneous IG administration. No appointments, no nurses, just you.

There are lots of folks in the PIDD community who take advantage of this and even travel with their medications. This led to me investigating the TSA regulations. Our medication is not supposed to be x-rayed, but it seems that TSA regulations require that it be x-rayed if they can't visually inspect it. I suppose, along with other documentation, one should also bring the product insert that outlines this.... hmm.

For further reading:
http://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1059.shtm

Well, Hello Kidneys...

I started feeling like utter crap over the weekend. Then my left flank started to hurt. I have treatment on Monday, so I figured I could wait it out until then....

It got worse. I had to take pain meds for my side. I called and got an appointment with my immunologist. He agreed with me that it seemed like a kidney infection, so we took labs and I started on bactrim.

Two things: I am officially not allergic to sulfa drugs, which my siblings are. I tolerate bactrim quite well.

The labs came back yesterday morning. Everything was clean. So we don't know what's going on, but I think the bactrim is making me feel better, so I think I will just keep the silver lining and not look too much under the hood to see what's going on right now. I just need a break.

Limitations Exist.

"Limitations only exist if YOU let them"

Again, a facebook friend has provided the fodder for a blog entry.

As much as I'd like to pretend there are no limitations in life, let's all be honest here... There are PLENTY. I think that many people put up false limitations and don't live to their potential, but there are also people for whom platitudes like the above are actually hurtful. They make us ignore or deny our limitations, disregard what our bodies are telling us, and can actually lead to long term problems. I'm so glad for people who can live a life without limitation...

I am not one of those people.

Correct Specialists

People really like to avoid proper care.

This is the only explanation I have for the behavior of some folks. If your knee was broken, you wouldn't see an ear, nose, throat doctor, would you? Why do people insist on avoiding qualified immunologists?

I understand some people can't travel, but talk to me when you live more than two hours from the closest qualified doctors. It's worth it on these things to get it right. Going to an infectious disease doctor for diagnosis of an immune problem, especially when you have access to immunologists, is just silly and seems very much like you have some kind of munchausen problem, rather than a real immune deficiency.

I guess my opinions here are colored by the fact that I had to drive 45 minutes to get decent medical care as a kid, then drove an hour and a half or two hours to see my immunologist while I was in college. It's really not that far, especially when you have such a rare disease presentation and potential diagnosis. There are folks that fly to other parts of the country for better care from experts. An hour and a half is nothing in comparison.

Edit: In traffic, my current doctor is an hour away.

SUSHI BOAT!!

Sometimes, incentives are necessary to ensure medical compliance. After a full week of being completely 100% compliant with my oral medications, a SERIOUS accomplishment for me, my dear boyfriend has determined that after 2 weeks, I get a reward.

What is that reward, you ask?

A SUSHI BOAT!

He knows what gets to me.

Military Insurance

I have several friends who are in the military or belong to military families. In the recent budget released by the president, military insurance takes a hit.

The Military Officers Association of America reports that might have to end up paying $2000/year for premiums, along with an increase in deductible to about $320. Tricare is still some of the best insurance around, covering many conditions private insurance balks at.

Let's put this in perspective. By changing the structure of their insurance for a government savings of over $13 billion, the veterans and their families have to pay more. Meanwhile, private insurance rates are going up 25% for some folks and more for others. Just for myself last year, I paid over $1600 for premium costs... and that's only covering part of my premium because my employer covers most of it. Many employers are using this premium cost shift as a way to save money. Should the federal government really be expected not to follow suit?

I think members of the military and their families experience a lot to protect the country and that we should provide for their care, but at what expense? At what cost to the general populace? I can't afford the kind of care that tricare recipients receive freely. Sure, they will have more out of pocket costs now, but they'll still have access to some of the best insurance in the country. Many of those in federal service pay a lot more for their care.

Antibiotics and Sinusitis

Today, the American Academy of Allergy, Asthma, and Immunology linked to a study recently published by physicians at the Washington University School of Medicine. I'm sure the study will cause a lot of hubbub among doctors and patients because it essentially recommends just symptomatic treatment for most sinusitis, siding with a recent CDC panel's recommendations.

I, for one, am glad to see that serious work is being done to discuss what works and what doesn't for the average patient with sinusitis. Overusing antibiotics puts patients with chronic problems at higher risk for complications from antibiotic resistant bugs. Further, I think that most people go running to the primary care doctor for antibiotics at the first signs of discomfort. I think physicians should be much quicker to recommend symptom relief and much slower to dispense antibiotics. It would be better for people in the long run. People should also realize that it takes time for their immune response to fully kick in and remove the pathogens. In this study, patients treated with amoxicillin and patients treated with placebo had the same results 10 days out.

The study's authors were careful to exclude those with chronic sinusitis, ear infections, chest infections, and other complications to get a better picture of what the average person with a normal immune system and normal sinus presentations would experience. I am hopeful that the next stages of the investigators' work will yield some positive outcomes and treatment procedures for those with sinus infections... hopefully, they'll be antibiotic free.

Entitled Parents

So we all know how I feel about using children as an excuse. I know it's difficult to be a parent and I have all the respect in the world for those who choose to become parents and are dedicated to their children.

There comes a time when this becomes absurd. Being a parent shouldn't entitle you to any special privileges. Maybe I'm just tired and unsympathetic right now, but just because you spawn some progeny doesn't mean you should get more sick leave.

Yes. A friend with a new baby was complaining that because she has to take care of 2 people she should be entitled to two times the sick leave. Nope, sorry. You chose to have kids. I didn't choose to have a disease that has me spending a lot of sick, vacation, and unpaid leave to care for myself. Just because you've decided to have kids doesn't mean you should have more rights to sick time than I do.

In the first year of life, new parents are entitled to 12 weeks of FMLA. Mom and Dad both have that option (should their employers be large enough), so that amounts to 24 weeks of leave. Yes, babies get sick often and can often make the parents sick also, but that shouldn't get you more leave. Heck, you should feel lucky you have paid leave at all. There are millions of parents in this country who don't have paid leave of any kind, let alone the ability to take FMLA time, even if they are legally entitled to it.

"Children are the future." Yes. They are. But your child's future doesn't make you more important than me, especially not in the eyes of the law. Parents get a lot of leeway for a lot of things and people don't ask new parents for favors. Take what you can get and please, for the love of all that is good, just shut up about what a challenge it is. Talk to me when you've been going to work for the better part of the last 4 months while sick enough to take a sick day.

Note: many of the parents I know are not like this, but there are a vocal few who seem to think they're better than I am and more deserving of the ability to have time off when they or little Timmy are sick.

FSA nearing depletion...

I am an extremely fortunate person. I have an FSA and am able to elect to have money taken out of my paycheck before taxes.

I am usually more on top of things than this, but I logged in today to find that my poor balance is now at $16.45. Poor FSA. I elected $2000 this year, to help cover my travel to the IDF Conference in Phoenix, but apparently, I misjudged. It's amazing, especially considering how many OTC things I do not submit for reimbursement, etc. I know next year won't be quite as expensive (I'm probably skipping IDF retreats this summer) but YIKES. At least things turn over on March 1.

It's expensive to be sick. Blargh.

THE SKY IS FALLING

Oh wait. No it isn't.

So there's a manufacturer's shortage for many medications in the US right now. This happens sometimes, yadda yadda, not usually an issue. Most of the time there's something else to use. Besides that, there has never been a shortage so dire that I was denied product and I've been on almost a decade.

This is not the case with some people's preferred brand of IVIG, so if there's even a RUMOR of a shortage people totally freak out without taking 2 seconds to think and perform a simple google search.

Supplies of Gammagard, my product of choice, are currently "tight" per my specialty pharmacy. My infusion is in 2 weeks, but yet they will have no problem supplying my product. Ok. Great. Fast forward to today, when people are absolutely flipping out when they found out they might have to use another product. THEN the rumors start to fly. They're selling all our product to Europe, etc.

This is when I get frustrated. You're panicking people who already have anxiety problems potentially and making them think this is some kind of emergency (it's not) so why not take it down a notch and wait until you can get someone on the phone in the morning? Because that wouldn't be as dramatic? Sigh.

Like I said in the group...
-Not all pharmacies are having problems. Mine isn't. I called on Tuesday and everything is fine.
-The IVIG manufacturer in question has supported our community in ways unprecedented with other companies. They've also said NUMEROUS times that PIDD patients are an absolute priority to receive product. Off label uses (which use a great deal of product) would be last on the list.
-Only 3 facilities for the company are authorized to produce product to sell in the EU. 1 of those is in the US. Meanwhile, it doesn't even make sense for them to send product from US to sell in Europe. IVIG is cheaper per gram there.
-These shortages wouldn't happen if there were more healthy plasma donors. Donations fall off during the holidays, so if patients want to ensure a good pool, they should convince people to donate plasma more often.

I wish people would give a little more consideration before flying off into some land of rumor and total bull and would give even more consideration to sharing that stuff with others.

Excuses

It is unusual for me to not volunteer to take care of things. As many things as I can for as many people. Lately, though, I've not been able to do as much due to the aforementioned series of sinus infections (my sinuses still ain't right, but that's another post for another time). I am finding that this results in dirty looks from people, as though I'm not doing enough, or pushy emails about why I've not completed things more quickly. I am but one person. I can only manage so much.

This brings me to an issue a friend pointed out on facebook. Why is it that parents get so much leeway for leaving early, not showing up, being generally unreliable, when folks like me, who try their best but have a disease that gets in the way, often wind up holding the bag? I understand that parenting is difficult, but so is living with a chronic illness. I do not whine about it. In fact, if you know about how I'm feeling in a given day, feel lucky because I do not share that information freely (except here, but... not everyone reads this, so I digress) for fear that people will not see me as normal.

I never use PIDD as an excuse to get out of something. If I say I can't, it isn't because I just don't want to, although I guess feeling so crappy you don't want to do something could qualify in that case, but I won't count it. Other people are able to make me feel SO GUILTY when I'm taking their time away from their precious babies (they grow up so fast, you know?) because I can't manage to add some additional task to my plate. It isn't fair to me. If your kids are going to be your primary priority, say so from the outset and don't volunteer to help just to be on the list. Don't push your work on me because you can't actually do what you've said because, odds are, I am working hard to meet my own commitments.

The Red Flags of Quackery

I submit the following without comment:

From Sci-ence.org

Dear Sinuses

Dear Sinuses,

You had the audacity to rudely keep me up last night. I had to get up several times to clear you with saline rinse. this is not ok. NOT ACCEPTABLE, SINUSES! DO YOU HEAR ME!?!?!?! I think you're just angry because Cipro is over too soon. I understand. I'm kind of bummed, too, because we were doing so well. Now, not so much because you've decided to be difficult. I thought we had an understanding, but apparently not.

Please help me get the crap out of you before this gets any worse.

Thanks,

Me.

Facebook Status "Awareness Month"

ADHD Awareness Month is September.
Autism Awareness Month is April.

Why am I seeing status messages that say that they are now and that you should definitely change your status to whatever disease thing? People are total sheep. They add whatever disease they're connected to to such status messages and post them. I saw one once that stretched the limits of belief. Did you really need to list the 86 diseases you think are invisible on that status? No, probably not. Did anyone become more aware of your particular illness because of that status? No, probably not. Would they become more aware if you posted information and helpful tools about your illness? Probably more than with just a status message.

I really can't understand all the status-message-chain-letters around. Have we not learned that lesson in print? Ok, then via email? No. No, we havent. I understand you want to be sympathetic to whomever posted the status in the first place, but how about offering a casserole, or if you're far away, send them a nice email or card? Why does your status message need to say "If you don't post this as your status for an hour, you hate all people with cancer?" The fact of the matter is, it doesn't need to say that.

Besides all of this, most of the "Awareness" stuff I see on Facebook is just thinly-veiled name dropping. How about, instead, we actually learn about these illnesses, the warning signs, all of that kind of thing? Can we post those as an alternative to these silly "awareness" photos and messages? Because those might actually help someone come to a diagnosis or figure out what's going on with their situation. But no one wants to know that the really have that disease or diagnosis, do they?

Cancer Barbie

I have all the sympathy in the world for little kids with cancer.

Since we've gotten that out of the way, I shall start my tirade. WHY DOES THERE NEED TO BE A BALD BARBIE? Oh right, there doesn't. Little girls shouldn't need a Barbie who looks like them, because, guess what, no one actually looks like Barbie! Shocking, but true.

I don't feel this makes a big contribution to any sort of well-being for these little girls. How about their friends and family make them feel beautiful outside of any references to dolls or external matters? How about we make them feel valuable and beautiful for being who they are and being brave in the face of all this?

Some people on Facebook seem to think this is the best idea in the world, and it seems to be catching on. They also seem to think that nonprofits actually make money on social marketing schemes. News flash, kids: social marketing makes very little money for these nonprofits and much more for the corporation they are "partnered" with. It's greenwashing. How about instead of a cancer barbie Mattel spends that development expense on just GIVING TOYS TO THE KIDS AT ST JUDE'S. How novel. Using a channel that already exists to do good. GO FIGURE.

EDIT: Also, do kids really need to be so focused on being sick all the time? I don't think so. I think the bald barbie idea just brings attention to "oh you're sick, you need a different barbie, not the ones you've always had."

Yay!

You'll never guess who gets to start yet another course of antibiotics today!?!?! Oh wait. You're reading this, so you probably CAN guess that it's me... especially after our conversation on Monday.

I started having symptoms on Friday of some sort of nastiness... Had IVIG on Monday. I was really excited because it seemed to be working and taking care of the buggies because I felt better yesterday. I guess I burned through that segment of my IVIG, because the bugs are back with a vengeance. Now I have a NASTY cough, all kinds of colors escaping... Let's just summarize and say it's not pretty. Back on antibiotics I go. I was on for most of December, so I'd hoped to have a break. Sigh.

I just want to feel well.

Sinus Complications

Today I had IVIG. I also have another sinus infection. At least that's what seems to be happening. I have a prescription for Cipro that I am to fill and start taking on Wednesday if I'm not feeling better.

The doctor and I discussed the increased infections I've been having, and we've come to the conclusion that there is more testing in my future. Basically, we'll treat this infection then see how long it takes for me to get another one. When I get the next one, especially if it is soon after stopping antibiotics, I will go in for an x-ray of my sinuses so we can see if there's anything structural that could be causing my issues. If there is that possibility, we'll go from there as to what happens next. I'm over all this and wish I could just fix it. Quickly and permanently. I'm tired of being sick.

Medical Dictionary

I really don't mind sharing knowledge with people. I don't at all. In fact, I am glad to share what I've learned with others.

What annoys me is when those same people won't take the time to do a simple google search before asking me to do it for them. I get that I'm good at googling and finding information. I am proud of that. If you expect me to help you, though, you have to show at least some initiative, or it gets to be overwhelming. I'm usually finding out things about my own diagnoses or symptoms or what have you. It's hard for me to take on research projects of your common cold. It's a cold. Take Mucinex. GAH!

I will jump in to facebook conversations about symptom remedies, though, because I really feel like people are in the dark about that stuff. The cold medicine aisle is confusing for me and I KNOW what I'm looking for. Specific brand guidance, etc, can be extremely helpful for people, and I realize that, so I try and do what I can. I also try to tell them active ingredients that will help certain symptoms. That leads to some interesting auto-corrects on my phone, as you can imagine.

I just don't want people to feel like I am a substitute for asking their doctor questions, I guess. I have walked a long road of confusion and questions to get here, and I think there's a lot of value in finding these things out for yourself and having a discourse with your medical professionals about what you find. Talk to your doctor. If you can't, find a new one. They're your partner.

Cytokine Storms

I read a lot of news articles, especially if they have to do with matters of health, new developments, etc. Sometimes this seems like a waste of time, but many times it seems to spark an interest in me to dig a little deeper. Granted, that doesn't always (or even often) happen, but it does make me think.

This article got me thinking about how little we know about how little we actually know about the function of the immune system. The idea of cytokine storms is an intriguing one to me for many reasons. I have many friends with PIDDs who have gradually started experiencing autoimmune co-morbid illness. What if... and here's a fundamental question no one knows the answer to... but what if the whole autoimmune stuff was something akin to a cytokine storm? Our bodies don't make antibodies and the rest of our immune system works overtime and produces this typhoon of overproduced crap that damages our bodies.

The things that stand out to me that gave me pause were the stuff about what happens in a cytokine storm and how the flu virus is contained in the lungs, but we experience other symptoms due to cytokine response. What if that same cytokine response is the reason people with CVID still experience lung damage while on proper IG replacement? Or what if it is the reason we have joint pain (even outside autoimmune diagnosis) Or what if.... there are many things I am thinking it makes sense for. All the repeated infections just make our bodies go completely haywire. It makes sense to me, anyway.

Medically Supportive Relationships

There are lots of folks out there who do not begin to understand what goes through my head on a daily basis. That's perfectly fine and reasonable, as a majority of people have no need to understand. The people that I am closest to, though, need to have some idea of what goes on with me and what to do in the case of an emergency. The ones who spend the most time with me have that information and more because I've equipped them to help me, should I need it.

But what about the day-to-day stuff? How much does my boyfriend need to understand, for example? This comes up in many discussions online and in many circles offline. I am a little disappointed because the couple who received the painful email has not one, but two sick children. One had a cold and now the other seems to be catching it. The little one had immunizations a week ago. I am praying with every fiber of my being that it wasn't the ones I'm supposed to avoid. I heard all this at dinner last night, when they were discussing the fact that the child had a fever. GREAT. We already had this discussion. If I get sick now, we're going to have to have a conversation again, DO NOT WANT.

Generally, my boyfriend is great about these things, but in this instance, he kind of thinks I'm worried about nothing. I just got over being sick for about 2 months, I would rather not get sick again for a little while. I understand that I seem a little nutty, but it matters to me. I don't want to wind up infected all the time and not being able to work. At least the people in my life are supportive and understanding when I do get infected and when I need to go to the doctor. There's no sense that I'm faking or being manipulative.

On the other side of the coin, there are those whose significant others and families both have no idea and also have no concept of the import of regular doctor visits and proper medical attention. I can't fathom being in a relationship with someone who told me I was not allowed to go see doctors without him. I can't imagine being in a situation where I couldn't get to my doctors. It is a scary thought, but one that many patients face. I do not ever want to be in that position. At least I know if I were stranded somewhere and needed to go, my boyfriend or my father would be first in line to make sure I got there safely.