If you haven’t gotten a chance to read part 1 of Sue’s Story click here! For the rest of you who we left on the edge of your seats, without further adieu: Part 2.

During all of the rehab, about three years into putting my body back together, I started having hives.

Hives under my casts, hives in my hands due to moving the wheelchair, hives under my arms when I was trying short distances with cruthches….hives everywhere!!!

I saw my general practitioner, and her response was it was possible that a medication I was taking was causing the hives. We stopped the medicines including NSAIDS. No changes. Maybe then, she thought, it was the stress of all the rehab, arranging rides, me working using a wheelchair and having the heavy stress of knowing there were more surgeries, etc.

It was difficult. I have to say that going to the bathroom and having to actually get to it from the wheel chair until I had the arm strength was stressful; but the working?! No.  That was my lifeline, and as far from stressful to me, as it was my identity.

To prove my point that stress was far from a factor, I began to speak for the Victims Impact Panel; to drivers who drove under the influence, and met amazing people who made some very misguided decisions that caused life long injury on the lives of others, but truly wanted to make changes in their lives. The hives continued, but were picking up steam.

My primary care doctor sent me to an allergist. Testing indicated I was allergic to everything! Months later we did the test again, and I was allergic to nothing! I went through a myriad of diets, however the amount of hives and the amount of time they stayed around increased.

After several years, my primary care doctor highly suggested I see a counselor, as nothing was working, and maybe it was truly due to stress. I met with the counselor, and after three sessions, she suggested I buy a light-box to help my depression, and said the hives would go away, as the hives were being manifested though my depression.

I felt frustrated, but I’d never really felt depressed through this. Frustrated, yes. Depressed, no. I got in the car and shook my head.

Seriously? Maybe this happens, but I had never heard of giving yourself hives. The appointments with her were depressing.

I went to a rheumatologist at a dear friend’s suggestion– maybe she’d have some answers. She was amazing and so totally positive. She was sure that we’d be able to figure this out, but in the end, she was as baffled as anyone else. She suggested a new primary care doc because she was sure mine was totally off her rocker. So she sent me to one at Oregon Health Sciences University.

Dr. Amy, and the Nurse Practitioner Megan, who works with her in the Center for Women’s Health and Healing, took me on. They put me in touch with a dermatologist*Dr. Benjamin, who at that time, was also practicing at OHSU.

I talked to him about my journey, and the response was,

“I have no idea what it is that you have – definitely hives, and they have made a home in you, but I will not give up until we have figured it out!”

He was true to his word. He asked me to do what he called “Morphology Clinics”, where doctors from the area and medical students could come and see the “weird people like me” early in the morning, and work on their diagnosing skills. I did this quite a few times. With in a year, a doctor came through the “Morphology Clinic” and told Dr. Benjamin exactly what I had.

Chronic Idiopathic Urticaria (CIU). How did she know? It turns our her husband, an allergist, was treating patients with a drug not yet on the market in studies, and this disease is what they had!

Better yet, his clinic was in my town! I was shocked and just ecstatic! I also cried. I had no answers for quite a few years. It was a happy cry, as it meant that now we might be able to change the impact my illness was having on my work day, what clothes I wore, how my face looked on any certain day.

I might have an opportunity to live among those who were “healthy”.

Dr. James, well, I’d like to build a monument on his and Dr. Benjamin’s behalf! He saw me, knew what was happening to me, and had amazing grace and compassion. He gave me some various antihistamines to try, and started to get me involved in a trial for a drug not yet on the market. This is where I learned that I had a Mast Cell Disorder.

When drug didn’t work, Dr. James, Dr. Benjamin and I tried everything my insurance company allowed, and always off-label for its use. It wasn’t until recently that there came a drug that does miracles for CIU patients. I was just not one of them.

Everything had to be approved and approval takes time. Besides the “antihistamine cocktails”, I tried the following medications: Cellcept, Chromolyn, Colchicine, Cyclosporine, Dapsone, Desloratidine, Dexamethazone, Humira, Imuran/Azathiaprine, IVIG, Voltaren, Ketotifen, Kineret, Phototherapy, Plaquenil, Rituximab (twice – monthly and pulsed), Sulfasalazine, and Xolair.

My next step is Plasmapheresis. As always, I’m ready to try something that at one time helped someone else! For now, the plasmapheresis will be my last step on the road, unless they come up with another medication.

Why does one go to such great lengths to find the “Magic Key” that opens the door to freedom from CIU? Because it’s a giant hole of pain, inflammation and itching. It can change your body from vital to swollen and almost immovable in a very short time with no reason or a decent “Head’s up!”

It’s horrifyingly costly.

There is loss of work time, sometimes loss of jobs and loss of friends. How can you keep up with people when your feet are so swollen due to Delayed Pressure Urticaria? When your toes don’t touch the floor, and it feels like you have small semi-hard snails or slugs in your feet? It’s that whole “it feels like a rock, but it’s kind of mushy, too!” sensation that makes walking torture.

There is the loss of “sense of self”, as your hives ebb and flow, and who you are today may not be reflected tomorrow. I was still me in the wheel chair. Though it changed me.  People like me also get very painful angioedema in the face, joints and just about anywhere.

You can never plan ahead. You can’t keep up with your friends or family. You may lose your job, or in my case, retire before you want to.

The hives can be internal and external. I can have hives on my face, on my scalp, in my throat, on my tongue, in my colon… Well, just anywhere there is tissue!