Hypo-gamma-globulin-emia. Hypogammaglobulinemia.
I was born with it. It's a deficiency of immune cells. A total deficiency and I'd be a "bubble girl", but I don't have a total deficiency.
I have some immunogammaglobulin, but not nearly enough.
I wasn't going to do this yet -- I haven't even used my name yet -- but my gut says it's time to come out with it.
So that's why I get sick so much. Viruses, infections, the whole germy smorgasbord. It's not the only thing wrong with my health, but it's definitely the most serious thing. It doesn't define me, but it profoundly affects my life.
I was sick a lot from the time I was a baby, but didn't get my diagnosis until I moved to Boston and a doctor at Harvard Med School tested me for it. One of my doctors here in South Florida re-tested me and of course got the same results.
There is a treatment, a monthly transfusion, and it costs $4000 each time. My insurance doesn't cover it (a few do). I'm totally okay with that. This country has a serious health-care crisis. We can't afford it all. Better to spend the money on researching a less expensive treatment or, for example, on cancer research (and yes, I'm also a cancer survivor, but it had nothing to do with the hypogammaglobulinemia, which gets easier to type each time!). Some of the people closest to me disagree; they think it should be covered. I can see their point, too.
I've been hospitalized with different viruses twice this year (before I started blogging). And last month I had mono -- again. Mono, mono, mono, there's sooooo many kinds. When I was younger they used to call it "the kissing disease" because people thought you got it from kissing. I wish, if that would mean I spend most of my time locking lips!
I buy bucketsful of Purell and Bath & Bodyworks' Midnight Pomegranite foaming hand sanitizer (yum!). I wash my hands after handling anyone and anything, keep them out of my mouth and nose and eyes, and everyone around me tries hard to do that too (they forget -- a lot!). Sometimes I'm weak, sometimes not so much, but I always seem to have enough energy to be snarky ;)
And that's the story --
Oh, wait. p.s.: my name is Lori.
I feel like I just gave a press conference so I should end by saying, "I'll take any questions now."
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14 comments:
spec-freaking-tacular post lori.
Lori, I am so sorry to hear about your condition. Is it hereditary? I can't imagine being sick so often. I hope you stay well for longer periods of time.
Gotcha El, beauteous!
Tracy: Thank you, that means so much to me...and her "gotcha", for other people reading this, refers to an email conversation we had about the treatments not being covered, where Tracy pointed out that hospitalizations cost a lot of money too. And that's true. Mine haven't equaled anywhere near $50,000 in any year but that doesn't mean they won't, so she makes an excellent point. (Hope you don't mind me writing about our emails, Trace!)
Pat: It is genetic. Science was never my subject, but the way it was explained to me -- I hope I get this right -- is that our DNA is thousands and thousands of years old, and some things can lie dormant and then just show up. So some ancestor in the Middle Ages could have had this...and now I do!
Nice going, Lor. I even learned something.
Wow! Way to let the cat out of the bag. Kudos!
Oh my gosh. I'm feeling for ya. That must be tough, but you seem to be keeping your head up despite it all.
You are a fighter.You will overcome this h word I can't even pronounce.You are right about the health care system.Maybe some day that will change.Maybe,
Meanwhile stay well and think positive thoughts.
Yikes, that's a big scary word! Well, Lori, congrats on outing yourself. Freeing isn't? Stay well, mkay?
Hey, I've got exactly the same problem. I've been with it 4 26yrs now, but it was only diagnosed 6yrs back. I had a medical aid & was living and working in south africa. I then used 2 get that globulin therapy at the hospital. However, I lost my job & had to move back 2 my home country(lesotho). I no longer have medical aid and hv tried to survive by conducting intensive exercise often. This disease is hereditary & its the worst a person can have because its more like HIV, de difference being there r no ARV's 4 it
Anonymous: Wow. I have no idea how you found this blog but glad you did. I feel you, totally. I was diagnosed in fifteen years ago and none of my insurances has covered the globulin so I've never had it but on the other hand, I've never needed an aide either.
No question this illness is a burden perhaps only others with it can understand. I just got out of the hospital two days ago. Third time this year. This time it was an infection, last time a virus, the time before a virus and an infection. Which sucks (other than the beds -- I love the beds!!).
Be well, chica and come again. -- Lori
this was an amazing post Lor. New computer will try to keep up
Hey lori, its me again (the guy in lesotho). Sorry to hear about your recent hospital encounter. This is what I normally do: everytime I feel like I am getting an infection, I immediatelly take an over-dose of antibiotics and about 3g vitamin C. I them do push-ups, crouches, and other exercises. As a result I haven't been to hospital this year. I do the following exercises 5 times a week: 550 push-ups, 240 crouches, 120 arms workout with weights. I do each session for about 1 hour. This helps to keep infections manageable. Cheers my man and keep well. I would also appreciate to know your techniques of controlling this cruel problem.
Hey, Ratoka. A huge problem for me is that basically I never feel well so unless I have obvious symptoms like a cough or sneezing it is hard for me to know when I am sick. Two of the last three hospitalizations were a total surprise. If you wish please email me at elbee1114@aol.com and make sure I know it's you from the subject line.
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