A strange and rather personal update from me this time. You see, in speaking with *Mollinda and ^jenepooh we realized that we had some things in common. It wasn't that we are all artists, or all women even though those are true. It was that each of us suffers from an illness that people simply misunderstand or are completely unaware of. Both of those brave girls had the guts to talk about it in their journals, and I told them I would do the same. Those of you that know me well enough know what I'm talking about, but there will be more information here than I have mentioned before.

I cannot stress how important awareness is. Without it, we can make no changes for the better, and thousands of people in desperate need of care fall by the wayside. This applies to every ill: not just those well-known enough to bear their own ribbons, and yet includes those as well. I'm here today to uphold my part of my promise to them, and attempt to raise your awareness of Primary Immune Deficiencies.

Chances are that you've met someone with an immune deficiency. Recent research by the Immune Deficiency Foundation state that 250,000 Americans have a Primary Immune Deficiency. They may not act or look sick, but their body lacks the ability to adequately fight off infection and disease. There are many classifications which fall under the umbrella of the term "immune deficiency", ranging from the mild to the severe. (An example, albeit unfunny example would be Disney's "Bubble Boy") It would be nigh impossible for me to explain each classification and the impact it has on the individual, as many times I have found the illness to be nearly as unique as the person. (And it would help if I were a doctor and had time to write that much information.) Most immune deficiencies are chronic and incurable, but may be treated by varying methods including oral antibiotics and monthly IVIG (intravenous immuno globulin) treatments. These treatments can help sustain the average sufferer and help them go about their lives almost normally. Unfortunately, this treatment is INSANELY costly, and is very seldom covered by insurance companies. Not enough companies are aware of the cost of maintenance for such a disease, without which the patient will suffer to a potentially lethal end. A well written, easy to read article about this troubling issue can be found HERE

The fact that people with potentially life threatening needs to receive treatments cannot afford even one visit per year when one visit per month is almost required in some cases is, quite frankly, deplorable and inhuman. To quote the author of the above article ( Dr. Hill ) "Gaps in treatment are not only dangerous to the health of these patients, but also result in severe emotional distress in many instances. IVIG is crucial to my patients, providing them with their only chance at living a normal and productive life. Needless to say, they often become distraught when they learn that Medicare's inadequate reimbursement policies limit their access to this life-saving treatment."

As someone with first hand experience with this frustration, I have difficulty expressing how unbearable it is to think that just because a disease is not as well known as others, it can be ignored and innocent people are left to die.

Please. I am begging you: talk about this. Write to your representatives about this trouble. Help us gain a voice to combat the sound of a roaring capitalist society. If you live in the states, write to your congressmen and women and tell them you want to see a change in the dispersion of treatments for Primary Immune Deficiency Sufferers.

You can keep abreast of all of the legal goings on here: The Immune Deficiency Foundation


Where do I fall in line under all of this?

Unfortunately, the nature of my disease (a variation of Common Variable Immune Deficiency (CVID) with autoimmune neutropenia) has caused me to build up an allergy to the IVIG treatments I used to receive as a child, the reactions of which are anaphylactic and can be life-threatening. The only treatment available to me currently without further research being conducted in this field is to treat every illness as it comes. Even after 40 years of research, the primary cause of CVID is unknown.

The inherent dangers of doing so are obvious, I should think. Chronic sinus infections, pneumonia, blood infections, respiratory infections and others can lead to end-organ damage, for which little can be done. At 26, I have already developed severe asthma I did not have as a child which inhibits my day to day life. Exercise is difficult, and I am constantly drained of energy. (this is a gross understatement) I can go from bouncing around the room to a high grade fever in less than 15 minutes. Trips to the emergency room are more common for me than regular check-ups. Anyone that looks at me is always surprised when I tell them that, in all seriousness, if I fall over to just take me to the hospital. Not because of the random seeming statement, but because I don't LOOK ill.

The grim outlook on my future says there are dark days ahead. There is a high mortality rate in CVID patients who develop a lymphoma, multiple surgeries may be necessary, and the high cost of maintenance medications greatly outnumber my monthly income. To shorten it for the sake of omgwtf: Danger: Sharp Curves Ahead.

Why in the hell am I telling you all of this? Certainly not because you need to know all of this about me, but because you should know this problem exists. If my experience can serve any purpose whatsoever, it is a real life example that things need to change. I am a real person. You know me or at least of me. You can now say you KNOW someone who suffers from it, and will continue to do so every day there is not treatment available.

HOWEVER. Do not spend time worrying about me; I've been dealing with it my entire life and I've accepted my future despite it's unpredictability and seeming unfairness. It is only as dark as I allow it to be. (And I am stubborn as everloving hell)

*Mollinda and ^jenepooh, I love you girls. Here are the links to their brave journals for April Awareness:

On a More Personal Level
Fibromyalgia: Now with Links!

And for something rather different, I completed an art piece which reflects a little about how I feel. I am dedicating it to fellow sufferers of CVID's, only two of which I know of on dA, a third counting a secondary immune deficiency. I will not list them to protect their privacy from my brashness.



I'll climb down off the podium now, but if you got this far...wow. Thank you.

NEXT JOURNAL WILL BE ALL HAPPY N STUFF!!! Promise!

Oh, and a fun aside: I ate at a waffle house today. It was love. Now I hope to see that I can keep the love waffles in my stomach.