My New Normal or Do You Want Some Cheese With That Whine?

Bear with me...this is going to be a looonnnggg post.

As I mentioned in this post I've been having some strange allergic reactions since the middle of April. Well, it turns out after several visits to two different doctors and lots of blood work the doctors have figured out what I'm allergic to and it's....MYSELF! Yes, you read that correctly. I have an autoimmune disorder called Chronic Idiopathic Urticaria (CIU). That's medical speak for...We don't know why, but you've become allergic to YOURSELF! If you're bored and you want to know more about CIU click here.

Without sharing information that isn't mine to share I will tell you that my family is replete with autoimmune disorders. The fact that I've made it 43 years without any autoimmune issues should be more surprising to me than this diagnosis.

The end result of this fun condition is hives and angioedema (swelling of the eyes and lips). Sometimes I can tell when it's going to happen - other times not. Let's just say on the mornings I wake up and can see my lips and my upper eyelids in my peripheral vision I know it's not going to be a good day. On more than one occasion Tony has had to go into work late or miss the entire day because I've been so swollen I can't see well enough to take care of Lily.





Don't worry. I haven't become obsessed with taking pictures of myself looking...ahem...let's say less than my best. It's just that when this all started it never failed that every time I went to the doctor I looked like my normal self. You know, like when you take your car to the mechanic and it won't make the noise you've been hearing for weeks! So, my primary care doctor actually asked me if I could take some pictures to show him...and as it turns out to show you, too. I don't know if I should admit this or not, but lots of days I've looked a whole lot worse than I do in these pictures.

Honestly, when I look like that I can't stand to see a mirror and I hate for other people to have to look at me. There have been times when I'm almost unrecognizable to myself. Unfortunately, sometimes I still have to go out in public...like when I've gone to the doctor's office, the pharmacy, and the lab. On more than one occasion I've actually had people pull their children away from me. Talk about life affirming. But let's be honest, I can't say that I blame them. Would you?

At any given time I can have hives in 3 different stages: past, present, and future. The old hives leave purple splotches that look like bruises, the new hives are fire engine red, and the hives that are about to appear are pinky/red with white circles around them. Doesn't that paint a pretty picture??

When I have a particularly bad flare up I feel like my skin is crawling or, better yet, like I want to crawl out of my skin. My skin itches like crazy, but I can't stand to touch it. Remember when you were a little kid and you had a really high fever and you couldn't stand for anything to touch your skin except the feel of your mom's cool palm against your cheek or forehead? That's exactly how it feels. Oh yeah, and speaking of moms...I may be 43 but when I'm sick I still want my mother!

I'm not going to lie to you, the last few months have been kind of rough and at times even a little scary. Three weeks ago I had a really bad flare up and ended up in the Emergency Room with an acute allergic reaction to myself. How weird is that?!? Really weird - trust me! In fact, now I carry an EpiPen with me at all times. We're talking seriously weird.

For several days before I ended up in the ER my symptoms kept escalating. I had crazy hives. Not a few here or there...we're talking thousands...literally. I do my best to keep this a family friendly blog so you'll just have to trust me when I say I had hives everywhere...and I do mean E.V.E.R.Y.W.H.E.R.E. Oh, and let's not forget the attractive lip and eye swelling. Can I just tell you how pretty I looked?!? Purty, purty, purty! If nothing else this CIU is doing wonders for my self-esteem ;-)

If I could have gotten my hands on a Burkha I would've worn it. On second thought...probably not...because what I really wanted to wear was NOTHING! Okay, okay, sorry about that visual.

Anyway, I digress...during this time I was in daily communication with my allergist. Who, by the way, I think is terrific. At one point Dr. K told me if I didn't notice significant improvement in 24 hours she wanted me to go to the ER and she would arrange for me to receive IV steroids since the 60 mgs of steroids I was taking orally didn't seem to be making a dent. Dr. K also assured me that over time I would learn to read the signals my body was sending and I would know when/if I needed to go to the ER. I remember thinking...um...okay...sure...whatever.

Later that same afternoon as I was standing there in my bathroom seriously preparing to take my clothes off so I could lie naked on the cold tile bathroom floor (because nothing was giving me relief) it hit me...maybe this is what Dr. K. meant when she told me my body would let me know when it was time to go to the ER!

So, I called Mary Beth and asked her if she could drive me to the hospital. Let me tell you her response time is better than 911! No joking. Not only that, but she also comes complete with babysitting service. Mary Beth was on my front porch before I hung up the phone and she had Katie with her to stay with Lily.

Because the Waters girls never like to miss a good party, Patti came to the ER to join in the fun. As usual the 3 of us acted like we were at a Happy Hour instead of the hospital and that was exactly what I needed! Well, okay, that and the 3 IV's the ER doctor gave me!

I received really great care in the ER. Not only from my sisters, but from the doctors and nurses, too! I was seen immediately and was given the first IV within minutes of arriving...and then the next 2 a little later when they realized the first one wasn't going to be enough.

My family has been incredibly supportive since this whole craziness began. Not only by keeping me amused in the ER, but also by taking Lily out for a few hours so I can have some quiet time, stopping by with flowers, running errands for me, and I could go on and on.

My dad has become Lily and my private chauffeur. In fact, that's what Lily actually calls him, "Our chauffeur." Lily will say things like, "Is our chauffeur going to drive us or are you?" Isn't she a riot?? As for Dad, he refers to his new found driving duties as, "Driving Miss Lily."

To "manage" the hives I'm taking A LOT of medicine. I take 4 different prescription strength antihistamines a day and an obnoxious amount of Benadryl (300 - 450 mg a day) if I'm really itchy. Hence the need for "our chauffeur". I'm not sure how well these medicines are managing my hives, but I do know they make my mouth feel like the Sahara Desert!

I'm also taking a pretty steady diet of steroids. I hate taking the steroids and my doctor hates prescribing them. It's just that right now it's seems that steroids are the only thing that will quiet the hives when they get out of hand.

Have you ever looked at the side effects of taking steroids? It's awful. Staggering really. While they are fixing one thing they can be damaging a whole lot of other things. I have been weaned off the steroids several times since this all began, but it seems like a few days/weeks later I end up needing to get back on them.

I have gained a ton of weight since this started. I think that has a lot more to do with the hand to mouth disease (aka eating everything in sight) I develop whenever I'm nervous or stressed than with the steroids...but I'm gonna go ahead and blame the steroids if that's okay with you.

The "upside" of the steroids is they make me pretty hyper and that helps to compensate for the sedative effect of the mega doses of antihistamines. Actually, it over compensates. In fact, if you're looking for someone to come and alphabetize your canned goods or your spices at 3:00 a.m. I'm the girl for the job. Call me.

The good news is that the doctor that is considered the best at treating CIU is at Johns Hopkins. Practically in our own backyard. The bad news is my appointment with him is not until October 5th. I am on a waiting list to be seen earlier if possible. However, his office was quite candid with me and said they rarely have cancellations or no shows because...well...he's considered the best at treating CIU and people come from far and wide to see him.

Here's a little strange coincidence. My good friend, Barb, also has CIU. Barb and I met about 20 years ago when we worked at the Operations Center of the same bank. Barb has been dealing with CIU for more than 2 years...and with her crazy friend calling her with questions about it for about 2 months!

Tony has been very supportive since this whole thing started. I know it's really hard for him to see me like this and not be able to "fix it". You know what I mean? I'm sure this will come as quite a shock to you, but some days I've been less than entirely pleasant. So not only does Tony have to deal with his wife looking like The Creature From The Black Lagoon...he has to deal with his wife acting like The Creature From The Black Lagoon!

By far the hardest part of all of this is the effect it is having on Lily. It scares her. I scare her...and that kills me. I can't imagine being 3 years old and wondering/worrying what your Mommy is going to look like on any given day. Heck, I'm 43 and I'm having a hard time wrapping my brain around it!

Even though this hasn't been easy on Lily she is still her sweet, silly self. I know I promised I would try to stop posting cute Lily-isms. I lied. I just have to share these cute things Lily has said recently:

• Mommy, I know why you have hives. Because you like to eat bagels with cream cheese and hives.
  
• Mommy, you are a hivey mess!
  
• Mommy they're not like bee hives...right? There's no honey in them...right?


• Mommy, you don't have any hives today. I'm so proud of you!

I warned you this was going to be a long post. If you're still with me thanks for letting me get this off my chest. Please know I understand having hives and swollen eyes/lips is a minor inconvenience in the grand scheme of things. I do realize there are far worse things that many mothers have to deal with everyday. I guess I'm just feeling sorry for my itchy self tonight. Thanks for letting me whine...again.