Thursday, June 30, 2011

Side Effects

Wow. So I started a new drug I've never had before last night. Um. Yeah. These side effects are not fun.

Side effects are not usually a picnic, but I will troop right on through them. I'll do that with these, but yikes. Maybe they'll subside after taking the medicine for a couple days, but the label indicates that symptoms could last for a month after ceasing the drug.

There are lots of things that people with chronic illness put up with, and medication side effects are a big one. This med makes you sleepy, this one keeps you awake, that one makes you fat, that one makes you want to tear your eyes out, this one will keep you in the bathroom until the rapture. Every medication is different and they all seem to have their own attendant problems. Some more than others, I'll admit, but sometimes you're on enough of them to make it seem like it would be better to just be sick. Luckily, I'm not yet to that point.

Most healthy people just switch medications when there are unpleasant side effects. I usually just suffer through, stiff upper lip style, because I know there are limited options and that the options grow increasingly limited as bacteria builds resistance.

I just wish I didn't feel so awful right now.

Wednesday, June 29, 2011

I don't know how you do it...

This blog post served as an inspiration and rallying call for me on what's been a tough morning in a series of tough mornings.

The IDF Conference tends to make me quite introspective and thoughtful about my (this is the first time I've actually typed these words and I just might cry) disability. Yes, it's a disability. Yes, it's difficult. It can be overwhelming and lonely, but I try my best to not let either thing get me down.

It IS a lonely disorder, because even at a conference full of people who have problems like yours, no one's problems are the same. Some are better, some are worse. While people are around that "speak your language," it's hard because you're still the only one fluent in "you." I know that is a difficult thing for most people to understand, and it's a difficult thing to explain. There's a desolation in knowing that you're the only one.

A dear friend has a colon issue and has yet to find anyone in the world with the same dysfunction. Expert physicians have heard of it, but no one can say they've actually seen a patient with the problem. That is lonely. Not a single person. This is not just presentation, this is entire disease diagnosis that she can't find anyone to share with. That's even more lonely.

But what does all this mean for daily living?

With rare orphan diseases, people are often sympathetic to what you're going through. I often hear "Well, I shouldn't be complaining to YOU about xyz illness thing I have going on. You have enough stuff to deal with." I do, but it's nice to know that other people get sick too. Granted, it's on a whole different scale, but sometimes it's nice to know that other people feel like crap.

I like to know that my experiences can help someone else, so I am happy to offer advice on OTC cold medication or explain the possible side effects of antibiotics. It makes me feel more like a whole person and makes my experience a lot less lonely. I may never get the sense that I feel normal or like everyone else, but, then again, who feels that way?

I am happier now than I've ever been, even with the struggles and challenges of illness. It's not easy, but there is a lot to be said for getting through. I do it because I still can, gosh darn it. I keep putting one foot in front of the other because it feels good to have a victory, however small it might be.

Tuesday, June 28, 2011

Numbers

As I mentioned, I went to several sessions at the IDF conference related to SCID and the recent initiatives to make SCID testing a regular part of infant heel prick screening. In these sessions, I learned about outcomes and prognosis for children who get diagnosed early. Those outcomes are great. There is a lot that can be repaired with Bone Marrow Transplant.

Then you look at older children at the time of transplantation and the outcomes are rather more bleak. This is sad to me because it would take only a little to get these children tested and treated early.

I read today about this little boy in India. His parents are struggling to get him a transplant at the age of 2.

I really hope he is able to get the transplant from his sister and beat the overwhelming odds against him.

Monday, June 27, 2011

Genetics, Confusion, and Me

File this under TIL at the conference...

I went to several sessions discussing both Severe Combined Immune Deficiency and genetics but I really didn't think I would have the same kind of revelations I have had.

At the last conference, I learned that my having a primary immune deficiency isn't quite as random as I'd been led to believe. My grandfather passed away from complications resulting from Scleroderma, an autoimmune disease. My father has B12 neuropathy, more than likely related to an autoimmune dysfunction. These are connected in an interesting way. They all are connected via the T-helper cells and are basically sides of the same coin. It was as though a light went on in my head and I finally understood.

I found out through further research that my grandfather's family had a history of such diseases. My great grandmother wrote of symptoms that sounded like autoimmune problems in her letters to my grandfather. Also, such autoimmune conditions are more common among the Amish. My grandfather left the Amish and took the gene malfunctions with him.

Sitting in several genetics lessons, I had been told several times that CVID is not really connected to any particular gene. There are several that are related, the TACI gene being the most recently discovered one, but there is no clear path for genetic testing.

Then I went to a genetic counseling session. One of the mothers in the session pulled me aside after to tell me that the RAG dysfunction genes run in the Amish and have been shown to relate to B Cell disregulation, similar to what happened in my family with the autoimmune problems and my PIDD. It has specifically tied to SCID.

Uh. What? The next step will be to discuss this stuff with my immunologist at my next appointment. I am not terribly sure about how I feel with this stuff. I am going to have my T cell function checked. There is a distinct possibility that I could actually have a SCID variant rather than CVID. Wouldn't that be interesting?

Importantly, though, is the information this gives me and the genetic testing possibilities for my siblings and cousins. There is the chance that they could pass such a dysfunction on to their children. We'll have to trace it up and out to figure that out, but it certainly concerns me for my future children. It's a tough thing to learn, but would be a good thing to know.

Sunday, June 26, 2011

Indigestion

I thought I would post more about the conference and the wonderful things I learned. Well, I had the best intentions, but it just didn't work out that way and I wondered if there was some greater reason.

I was hoping it may have something to do with the fact that I've been stressed by external issues, and I really wish I could blame that. I feel strongly that there's something deeper at work. I just feel like I have a form of brain indigestion.

Uh. What?

Well, I think there has just been too much information uploaded to really be able to distill the valuable things yet. I am trying not to be too hard on myself, but that is a really challenging thing to do. It is difficult to explain properly. My mind feels like a brita pitcher. the top is full, and is slowly dripping down to give me the information that is most useful to me. I am working on it and will post about things I learned, but right now, it's just a little overwhelming. I know I learned things that were a relief as well as things that are a little scary. Eventually, I will share them with you. I promise.

Thursday, June 23, 2011

Hi From Phoenix!

Hey Guys!

I didn't forget about my blog, I'm just moving... and traveling... and now I'm in Phoenix for the Immune Deficiency Foundation's 2011 Conference. I'm here for patient education and connection with others. It should be a great time. I'll be posting some reactions to things I learn and hopefully will share some helpful things with you. In the meantime, here's a lovely photo taken from my balcony about 5 minutes ago... :-)



Nice view of the golf course, eh?

Friday, June 17, 2011

Autism and Vaccines

Autism is a sad disease and I can understand why parents want answers. What I don't understand is why, despite REPEATED scientific studies, people still believe there is some connection between autism and vaccines.

First of all, most of the claims are made surrounding mercury in vaccines. Guess what? There isn't mercury in childhood vaccines now. According to the CDC "Since 2001, with the exception of some influenza (flu) vaccines, thimerosal is not used as a preservative in routinely recommended childhood vaccines."(link)

So how, may I ask, could this nonexistent mercury cause elevated hormone levels requiring the prostate cancer drug lupron, as the recently-indicted doctor in this article suggests for his patients?

That's right. It can't. Get real. You should vaccinate your children because it protects them (and people like me) from things like measles. Let's use the hypothetical situation and say mercury in vaccines DOES cause autism (even though we already established it doesn't). What happens if you don't vaccinate? Your child could very well die of measles. Cases of deadly childhood diseases, like measles, are on the rise across the country. I'd rather have a living child with autism than one who died of measles.

But it isn't necessarily these healthy children from healthy parents that suffer the most. Children with issues like Primary Immune Deficiencies and cancers like leukemia can't fight of these germs at all. They also receive little to no benefit from vaccines. Not only do you endanger your child by not vaccinating, you also endanger me and very vulnerable kids that come into contact with your child.

Wednesday, June 15, 2011

Life Expectancy in the US is down...

Am I surprised by this story and infographic? Not exactly. It makes me sad, certainly, especially since it isn't right areas that are being impacted. It's poor, rural areas. Many of these places have conservative governors who would restrict Medicaid spending to ease their state budget woes.

I feel that this is very short-sighted for several reasons. Medicaid isn't exactly glamorous. You have to be extremely poor to receive it in most places. Then you're restricted in what you get done and how and where and by whom. It limits your ability to have much say in your care, especially since it really doesn't cover all that much.

The idea that someone wants to cut health care to the poor is abhorrent to me on many levels, but the fact that they use the economy as an excuse... the same economy that is forcing more people to delay care or onto the rolls of Medicare.... it fails to inspire much confidence in their humanity. Sure, give tax breaks to businesses and the wealthy when times are good, but poor economic outlooks are no excuse to increase these subsidies and decrease help to the poor. Poor people don't choose to be poor, for the most part, and really can't help it if they're poor and sick.

This trend is here to stay, my friends, and I don't see a way to reverse it until we're able to give people good, affordable health care on a consistent basis.

Monday, June 13, 2011

No More Salad Bars...

I went to a wedding this past weekend of a lovely sorority sister of mine. I did something I shouldn't have. I ate from the salad portion of the buffet.

Why is that such a bad thing? If lettuce and other veggies are not held at a cold enough temperature bacteria start to grow. It takes a lot of this bacteria to hurt most people, but as you know, dear reader, I am not a normal person. I have found that cucumbers and tomatoes are special culprits of this, but I've had problems with almost every raw veggie you'd see on a salad bar, so I usually shy away. This salad looked so tasty and I'm trying to eat more veggies... I think you can see where this is going...

It's gotten to the point where I fear eating at buffets and plan such that I can be sure to be near a familiar or private bathroom if I'm going to eat at one. I also have to be careful to make sure to avoid it entirely if I'll be in a car. I can't even eat at Subway anymore. I have found that their subs make me ill because of the veggies. Of course, I could get something with no veggies, but I always think "it will be ok this time" and eat the veggies and WHOA WITH THE REGRET!

So, in short, if you're serving salad to immune compromised or deficient people, please keep it very cold after cutting it. Thank you in advance.

"What'd you do to your arm?"

A colleague asked me that today after I came in after IVIG.

I could have used it as a teaching moment and probably should have, now that I'm thinking about it.

I could have told her about having a PIDD and what it means and how I essentially got a new donor-provided immune system today. I could have told her how important it is that people donate plasma and how beneficial it is for people to do so regularly. I could have let her know that I don't miss work because I'm flaky or a hypochondriac.

But...

I just told her I had a blood draw. I guess I did, so they could check my IgG levels, but that's not the primary reason for the bandage on my arm.

Oh well, I suppose.

Friday, June 10, 2011

Medicare IVIG Access Act

Just a quick note to encourage you to support the Medicare IVIG Access Act. Basically, this bill would fill the holes in the current IVIG benefit for Medicare recipients. This way, they'll be able to receive treatment in the home setting. The best news? Not only does it offset the costs of the program, it also offers a net savings to the federal government. Win win! Unfortunately, my community is small, so it's hard to get the attention of members of Congress... But with YOUR help, we can. Please take a moment and contact your members about this.

Thanks!

PS - The IDF supports this measure. More info can be found here.

Wednesday, June 8, 2011

Painful Emails

So last night I went to a potluck dinner with some other couples my boyfriend and I are friendly with, hosted by a couple with 2 small children. I overheard someone mention something about the youngest possibly having chicken pox, or having a fever. I wasn't sure quite what to do. Do you make an issue of it in the moment or do you wait and see or does it matter? I didn't necessarily want to disclose my illness to them or have them know that I was anything but perfect and normal. I like having those bubbles of people...

That bubble is now burst so I can find out if I was exposed to chicken pox or not. If so, I need to start antivirals or at least talk to my doctor about it, especially since I have a trip planned in 2 weeks. It sucks.

How do you tell someone "hey I maybe eavesdropped and heard something and I got 99 problems" and have them not look at you in a different way? The email is simple and straightforward, but it breaks my heart a little bit to think about it.




Hey [Friend]
Lisa thought she overheard someone say at dinner that [Baby] recently has chicken pox, is that right?

Either way, in the future, if the kids are sick or just getting over something, could you let me know ahead of time? Lisa has a Primary Immune Deficiency and doesn't make antibodies so her immune system doesn't work well.She is susceptible to get sick easily, even from childhood diseases (she could get chicken pox twice a year or more if she kept getting exposed to it).

Thanks
[Wonderful Boyfriend]


Uh yeah. I just feel sad. I know I shouldn't but that doesn't make it seem more fair or less silly.

Monday, June 6, 2011

Sick in Public

There's a lot of commentary about Steve Jobs today during his announcement at WWDC. Some people are excited about iOS5, some are excited that 10.7 Lion is going on sale for $29.99... but there are a lot of people who seem to be worried about the way Mr. Jobs looks. He looks like a sick person.

I have mentioned that there are times that I like not looking sick. This is one time I am reminded why. People speak about their worry for him and concern for his health because he has dropped a great deal of weight and is known to have liver problems. He no longer looks like the robust picture of a man full of vim and vigor at the head of a successful multinational organization.

Part of me wonders what is wrong and hopes it isn't serious. Another part wonders if people wouldn't talk more if he didn't look sick. What if he was dying and looked like he did 10 years ago? Would anyone comment that he'd been on this leave and looks perfectly fine? I think there would certainly be some folks who did, but certainly not as many as discuss his potential medical problems now that he looks sick. Think about it. If he looked robust, I don't think there'd be nearly the same level of fear around Apple and its future. It's interesting.

Thursday, June 2, 2011

So I guess that European vacation is out...

They've discovered a new strain of E. Coli in the latest European outbreak (article here) and, frankly, that's a little scary. It's especially frightening to know that they can't yet pinpoint the source of the infection. Gah!

I think there are many systemic things that we as humans do that make us unhealthy. Keeping the animals we eat as food on huge lots instead of more natural settings is one. There's evidence that even grass feeding cows for a week prior to slaughter drastically reduces the E. Coli they produce. I firmly believe that we should take the time to consider what it is we take into our bodies. Grass fed cows produce more methane, which adds to global climate change, but they also don't make us sick in the short-term. They also take up more space, which is a problem, but not insurmountable.

This also illuminates the fact that the American food safety system should be a priority. I worry for the folks I know in the UK who have PIDD that may contract this bug. People with normal immune systems are having trouble fighting it off. I can't imagine I'd survive very long, were I to contract it. The potential for food borne illness is a big reason why I try to eat more naturally and organically. It scares me that such things will happen in the United States, especially since Congress has decided it doesn't need to properly fund the FDA and hasn't given them enough enforcement rights. Which MAKES SO MUCH SENSE! I will never understand why the FDA can't get help. Oh yeah, that's right. Big food interests block this kind of legislation... I think Americans really need to consider their food supply system and the protection of it because it will happen here and it may happen to your children. Or to me.

Wednesday, June 1, 2011

On The Teevee

Neat! There's a PBS show called Healthy Body, Healthy Mind.

They did an episode about Primary Immunedeficiencies. It's quite interesting and explains some of the issues at a high level.

Enjoy!