2. I was diagnosed with it in the year: 2004

3. But I had symptoms since: 1995

4. The biggest adjustment I’ve had to make is: Learning to adjust to a reduced energy level and being careful of how I use my body – any pressure will make me swell.

5. Most people assume: That I’m faking it, or that a disease like this can’t be that debilitating to live with.

6. The hardest part about mornings are: Not knowing what the day will bring. Most of my swellings occur overnight, so waking up is always an adventure!

7. My favorite medical TV show is: Scrubs. FOR SURE not the “House” episode that featured – and totally botched – Hereditary Angioedema.

8. A gadget I couldn’t live without is: My cell phone.

9. The hardest part about nights are: being alone. When Jeff was working third shift, I constantly worried that I’d have a big swell and not be able to reach him, or get to the hospital in time. Now that he’s on second, I worry a bit less, as he is home before my attacks usually start.

10. Each day I take __ pills & vitamins. (No comments, please) Eleven, and none of them are a treatment for HAE.

11. Regarding alternative treatments I: am surprised at how many people think that they are a cure-all. I have a blood protein deficiency – my body doesn’t make a certain protein, or the protein that it makes is defective. There is no herb or acupuncture or massage technique in the world that is going to make my body make a protein that it doesn’t know how to make.

12. If I had to choose between an invisible illness or visible I would choose: invisible. Some of the time I’m “normal” and it’s nice to be able to pretend that I’m not sick.

13. Regarding working and career: I am in the fortunate situation that I worked with a company with a great disability system, and that I have been able to not work since June, 2008. My quality of life has gone up significantly. However, I am in the unfortunate situation that their claims administrator has not taken the proper time to learn about my disease and how it impacts my ability to hold a job, and is trying to throw me off of benefits. The Number One qualification of any job is to be able to show up, and I don’t do that very well.

14. People would be surprised to know: that this disease even exists.

15. The hardest thing to accept about my new reality has been: how ingrained work is in society. I hate telling people I don’t know that I’m “disabled” when they ask what I do for a living, cause I look fine if I’m in public (if I’m all swelled up, I stay home). So I just say that I don’t work, and I either get a sarcastic “That must be nice!” (yeah, it is…but I get to have a chronic illness instead!) or asked how many kids I have to justify my staying home. Work isn’t everything, and I’m glad to have “dropped out” of the corporate scene, even if it IS due to illness.

16. Something I never thought I could do with my illness that I did was: have a successful pregnancy, and deliver a healthy child.

17. The commercials about my illness: don’t exist. HAE is very rare…I’ve seen estimates of 1 in 10,000 – 150,000 people have it. It’s considered an “orphan” disease, and advertising for it would be silly. You don’t want to ask your doctor if Cinryze (the only available treatment in the US, and one that won’t work for me) is right for you. If you have to ask, it isn’t!

18. Something I really miss doing since I was diagnosed is: being able to take long walks.

19. It was really hard to have to give up: oddly, working. Again, so much of identity is tied up in that. I’m glad that I did – I feel so much better! – but I had to have a whole re-discovery period.

20. A new hobby I have taken up since my diagnosis is: being a crafty, crafty bitch. I have picked up most of the crafts since I started having symptoms (i.e., my entire adult life), but the last year or so I’ve really been able to spend time on stuff, and learn a lot of new techniques. Also, I have met some AMAZING crafters in the last year (you know who you are!).

21. If I could have one day of feeling normal again I would: take a long walk, and wear something constricting.

22. My illness has taught me: that many sick people are portrayed as being either whiners or heroes. Most of us are neither and both.

23. Want to know a secret? One thing people say that gets under my skin is: “And HOW does that impact your ability to work?”

24. But I love it when people: Get it. Get me.

25. My favorite motto, scripture, quote that gets me through tough times is: I may not have gone where I intended to go, but I think I have ended up where I needed to be – Douglas Adams

26. When someone is diagnosed I’d like to tell them: This sucks, and it’s frightening. It’s hard to get care or find a doctor that knows about this. It’s hard to make people understand you. But you need to stand up for you, and live the life that you want.

27. Something that has surprised me about living with an illness is: the community that people build around nothing more than having an illness.

28. The nicest thing someone did for me when I wasn’t feeling well was: take me grocery shopping, when I was almost blind from my eyes being swollen, and help me cook dinner for the party that I was bound and determined I was going to have that night. Thanks, Sarah! (New Years Eve, 2004)

29. I’m involved with Invisible Illness Week because: it’s important for people to realize that those around them might be more than meets the eye. I need to remind *myself* of that fact, and be more empathic (and try to lead other people to empathy by example).

30. The fact that you read this list makes me feel: thankful that you held on this long. If you want to know more about me and my illness, you can visit my “swell blog” at swellgal.wordpress.com. I haven’t updated recently, but that’s about to change.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

Woke up with lower right lip swelling at about 6:00 a.m.  Was resolved by 2:00  p.m. when I went to pick up my sister.  Fairly mild as far as lip swellings go.

I went an entire month without any swelling.

This is the first time I can remember since the three month break I had the year I graduated from college.  (At least, that’s when I think it was…that was a long time ago.)

Hey, Di (I can hear you thinking), why do you think that is?

I have a theory.

Although we are not sure what protein it is that I am missing (the docs seem to be leaning toward the thought that it is not C1 esterace inhibitor, but something else that holds the mast cells together), we know that having infusions of FFP (fresh frozen plasma) helped me out.  We think that the donor plasma has whatever protein I don’t have, and therefore heads off my symptoms.

I haven’t had plasma in almost a year, and probably won’t until I deliver this baby (for sure) and finish breastfeeding (speculative).  Therefore, I have had pretty regular swelling.

Until I got pregnant.

The doctors have told me that some women do really well when they are pregnant, and some women do really poorly when they are pregnant.  So far, I seem to be in Category A.  So what it is about pregnancy that has made my symptoms go down?

I think it’s the increased blood volume.

When you are pregnant, your blood volume increases by about 50%.  That means I have more protein floating in my body than I normally do.  I am guessing that the extra blood volume/protein presence has brought me up to “normal” levels, and lessened my swellings.

Since, again, we don’t know what protein I am missing/doesn’t work in me, there is no way to test this hypothesis. There doesn’t even seem to be a way to count/test the efficacy of many proteins other than C1,so it’s not like we can look at before/after labs (and, since there is nothing interesting in my labs anyway, the docs have discontinued making me go through a five-vial blood letting once a year).

It will be interesting to see if this trend continues for the rest of my pregnancy…watch this space!

Started with right hand overnight Friday/Saturday, which is continuing now (8:30 p.m.) and right eye which is starting to go down.

Friday, 11:42 p.m.

Saturday, 11:39 a.m.

Saturday, 1:49 p.m.

Saturday, 6:51 p.m.

It is now Sunday, 11:17 a.m., and I am starting to go down, and just look like I have had collagen gone terribly wrong.

Nothing new to report on the doc front – no change in therapy, no change in diagnosis, we’ll talk more about delivery at my next visit. Boooring.