Living with an Auto-Immune Disorder (Or; Why I Became a Hermit)

1:59 AM

Right now it’s 12:47 in the morning and I should be fast asleep. I’m up, however, and it’s not my choice. I’ve been happily married for six months, am in the prime of my life, and should be on cloud nine. Instead, this has been the darkest and loneliest period of my life thus far. You see, I have these giant, burning, itching, painful red welts all over my body, making it impossible to sleep. Where there aren’t hives, there are shadows--remains of the hives from yesterday that turn into bruises. I spend my days constantly asking myself if I should leave the hives alone (if I don’t scratch them, they burn), or scratch them (sweet relief, then stinging). I have hives on my palms and on the bottoms of my feet. In case you didn’t know, that skin wasn’t made to stretch. Those ones are particularly painful, especially in the days after when they become bruises. And, there are scars. Not physical ones, but the emotional ones that this ordeal has brought me. Fear, despair, loneliness, hopelessness, depression, they’re all there. There has been more damage done to my heart than to my body.

 It wasn’t always like this. I never had a single hive in my life (Mom, feel free to correct me if I’m wrong) until the month before my wedding. It made perfect sense though: I took on too many projects in planning my DIY wedding and was stressed and burnt out. A quick pack of steroids* and they went away, just in time to say “I do”. Michael and I enjoyed about one month of wedded bliss before I woke up in the middle of the night with my lip rapidly swelling. It takes guts to post pictures like these on the internet, so please, be kind:

this is for real.
 Crazy, right? After taking Benedryll to no avail, we made a trek to the ER at four in the morning. I was diagnosed with Idiopathic Angioedema, aka a random lip swelling. The ER doctor assured me it had happened to him before too, and that it would likely be a one-time occurrence. This was in October. About this time, my hives came back. I don’t remember the specifics of when; I just remember it was tied to my lip. They were uncomfortable, but not unbearable. My doctor prescribed another steroid* pack, and they subsided a bit. About a week after the ER visit, my lip swelled up again. This time it wasn’t as bad, and I knew that it would go away in time. It seemed strange that I was having inflammation despite being on steroids*. After this, it was all a blur. I fell off the face of the planet and spent my October-November at home alone. I often could not go out in public due to the hives and facial swelling; it takes about 3 days for my lip to return to normal. My eyes also started to swell shut on a semi-regular basis, which made me look like I had been punched. My body stopped responding to the steroids and I could not get any relief. My doctor was out of ideas and so I turned to an allergist in early December.
This lovely feature happened at least once a week and took about 3 days to disappear.

I was SO EXCITED for my allergy test, I was hoping to finally get some answers. On December 17, I waited 2 hours and 45 minutes past my appointment time for the allergist to see me. She spend 5 minutes with me before ordering food allergy tests. The results came back and I had tested positive for peanut, tree nut, and orange allergies. This made no sense to me as I rarely eat nuts and oranges had just become in season. I tried to explain this to her but she told me that I must be consuming nut products without knowing. I went home with newfound knowledge and an epi-pen.

Christmas Eve is my favorite day of the year. I love my extended family and enjoy celebrating our traditions together. I was especially excited to share them with Michael! Unfortunately, my evening was cut short due to the hives that had manifested all over my shoulders and back. My Mom, Michael, and I drove all over town to try and find a place open to get allergy medicine. Luckily, we found a 7-11. Despite taking 5x the recommended daily dose of Zyrtec, I awoke on Christmas morning with my eyes swollen shut. I had hoped to have a special Christmas Day with Michael and wanted to take many pictures of our first Christmas. Instead, I looked like a Cyclops and was so embarrassed for even my family to see me. Needless to say, my cute outfit I had planned did not get worn. Every time I had an outbreak like this, we tried to tie it back to nuts or oranges. There was minuscule amount of orange extract in my tea, therefore it had to be responsible for a lip swelling. Or, this sandwich must have been cooked in a pan with peanut oil, that’s why I had hundreds of hives. It still didn’t add up to me. If this were food allergies, my total elimination of these foods should have resulted in total elimination of the hives. And wouldn’t it respond to the buckets of Claritin and Zyrtec I was taking?

Despite my treatment of my allergies, I was still very ill. For the second time, my throat swelled up and made it difficult to breathe. I made yet another trip to the ER.

In January, at the recommendation of my Mother-in-Law, I got a second opinion. Dr. Baker and his medical assistants took a great deal of time and care in getting my medical history and symptoms. They were surprisingly and incredibly thorough. Dr. Baker took a look at my history and current conditions and immediately diagnosed me with Auto-Immune Hives.

 Let me back up a bit: I have a severely low thyroid (it's an auto-immune thing). I was diagnosed about 4 years ago when I literally could not move or get out of bed. While it is a lot better, I still struggle with it. My dose is continually increased every few months (it’s ridiculously high right now). I know it needs to be changed when I disappear from the world for a few weeks and sleep (my friends know this well). When one has an auto-immune disorder, it is very likely for them to develop another. I am one of those lucky people! In a nut-shell, my body is mimicking the allergies (which is why I can test positive for different things at any given time), and attacking itself. Hence, the hives. I learned that my epi-pen was useless: my throat closing, while painful, would not hurt me. It would stop at a certain point because it was not an allergic reaction. Essentially, it was a giant hive inside my throat.

Dr. Baker gave me a cocktail of FOUR different allergy medications, in hopes of treatment. There was also another option available to me if the medications didn’t work: an injection of Xolair. Xolair is a medicine that is FDA approved for asthma patients. It is also known to treat chronic hives, and is in the process of being FDA approved for that category. It is currently not covered by insurance companies. Dr. Baker offers the Xolair leftover from his asthma patients to his chronic hives patients. Some patients only needed one or two doses and were cured; others need it as little as once a month. Patients are only required to pay the shot fee, and, if it works, Dr. Baker’s office petitions the insurance company to pay for it in the future.

 The allergy medication held things off for about two weeks. After doing a lot of research on Xolair, I was feeling quite optimistic. Of the results and testimonials posted, the Xolair success rate was extremely high. It seemed as if I had finally found my answer, and, in February, I got my first dose.
This was a normal, everyday smattering of hives before Xolair. Since I began the Xolair, they are now golf-ball to base-ball sized welts.

And there it was! Sweet relief. Ten GLORIOUS days where I was able to leave the house freely, see my long-lost friends, and wear clothes that were cute instead of loose and sloppy. I finally felt the freedom I had been yearning for months. And then…they came back. And they came back worse than ever. Instead of having hundreds of little hives, I had baseball sized ones all over my body. It was horrible, burning pain. I made an emergency appointment with Dr. Baker, and he thought the Xolair was worth another shot. I was not convinced, but was willing to do anything for relief. After my shot, he sent me home with a very high dose of steroids. Three more days of hives and then I got another ten days of relief. Then they were back, and still worse than ever. For the first time since my diagnosis, my lip swelling came back again. I was a mess. Michael and I decided to give the shot one last go. On March 14th I received my final dose of Xolair. Normally it takes three days and the hives disappear. It has been almost a week and I have horrible welts all over my body. This is especially discouraging given the cost. Though we are only required to pay for the shot fee, it's well over $100 (after our deductible was met) per shot. They also charge an office visit fee ($200) to "release" you after the shot. This makes my three shots of Xolair nearly $1000. That's a lot of money for something that is actually making things worse.

So what’s next? Michael and I are looking into a nautropath. My final option in conventional medicine is to take a pill that would be really hard on my body. My body is in poor shape and has been through enough; therefore I am saving that as a last resort. If I do decide to take the medication, I will be seeing a doctor at OHSU.

So what does this mean? This ongoing saga has been the darkest point in my life. I don’t know if or when I will ever be able to work again. That’s a scary prospect considering the thousands of dollars in medical bills the doctor’s visits, medications, and ER visits have cost us. My husband is working 50+ hours a week and coming home each day to take care of me. My skin is often too painful to touch so he does not get the affection he deserves. I would venture to say that about 98% of the people in my life have no idea how severe and hard this has been. Hives don't seem like a big deal, but these hives? These are life-altering, depression inducing, no-good, rotten ones! I spend most days at home, alone. That does not help things. We adopted Teddy to keep me company, and that has helped immensely. I love that little guy! To be honest though, it’s still a pretty lonely life. I think the worst part about this is the prospect that I might have this forever. Outbreaks are supposed to come and go, but mine is still here. If it doesn’t go away, I will not be able to have children. I cannot be a mother in this condition (I can hardly be a wife). It breaks my heart thinking about it, because that is my greatest dream in life.

February and March were/are the lowest point of this whole journey. I had answers and hope in my hands and they were taken from me in one fell swoop. When the shot is over, the hives are worse than ever before. I have no hope of leaving the house, even for a small errand. It’s too painful to have anything touch my skin. To be bluntly honest, I’m incredibly lonely here by myself all day (have I mentioned that already?). Teddy helps, but it’s still difficult. Michael’s heart breaks for me and he has a hard time staying positive. We’re a grumpy, pessimistic house most days. I cannot express how wonderful he has been. I can’t imagine working so hard and having to take care of someone. He picks up the slack and does the chores I am unable to do. He puts up with a messy house because I sleep most of the time during outbreaks (I have a medication that knocks me out. I’ve been known to sleep in until 4 pm. because of it).

Do I feel sorry for myself? You better believe I do. Yes, it could be worse or life-threatening, but I'm allowed to sit back and say, "This SUCKS"! But I undoubtedly believe there is a greater purpose to this mess. Michael and I will be stronger for it; he has above and beyond fulfilled the “in sickness” part of our vows. I should clarify that I'm not looking for sympathy. I don't want people to feel sorry for me. If I were to ask for anything, it would be encouragement. Prayer, kind words, a hug (well, actually on most days this would be a horrible idea, haha), or whatever. Checking in with me means more than I could possibly express. I know I'm not alone, but sometimes it's hard not to feel that way. Thank you to those who have supported me and cared for me during this terrible journey. I am beyond grateful.

 So there it is. I’ve been a hermit for six months and now the world knows why. I don’t have an endgame, I don’t know when/if I will go back to being normal. But today I have hope, and hope is enough. I have hope that the naturopath will be beneficial in some way. I have hope that our marriage will be stronger as a result of this. I have hope that I will truly appreciate the days of relief I am given, and not take such a wonderful gift for granted. I have hope that this physical and emotional pain will draw me nearer to Christ, even though, in all honesty, he seems quite far away these days. The hope I have today is enough. After all, the hope I have today is slightly more than yesterday and a little less than tomorrow.

*Steroids. What a lovely little beast. I am not a fan of them because it makes me lose complete control over my emotions and attitude. Happy one second, sobbing the next, raging mad, then sobbing, then back to happy. It literally can change in a second! I've gone through 4-5 packs so far, which is 4-5 weeks of being a CRAZY person. Poor, poor Michael.

You Might Also Like


  1. Allie,
    I'm so sorry for your pain, fear and despair. What a sad beginning to a wonderful new life with Michael, however, you now know exactly who you married-a strong,committed, loving man.

    I suffer from Rheumatoid Arthritis, which is an auto-immune disease as well. I'm on immune suppressing medicines that literally suppress my immune system from attacking itself. I don't know, but your doctor would, if any of these have been approved for your condition. Such as Enbrel, Humira, Remicade (which I take) or maybe even Methotrexate (a chemo drug I use)it's worth checking into.

    My suggestion for getting through this dark period is to tell yourself it will ease- eventually- you must believe this, I cannot stress this point enough, it will ease, make it your mantra until you believe it. I've spent time on the dark side (too much actually) and if you can relax into this period, give yourself license to be cared for it may reduce your stress (big bad player with these auto-immune diseases)thus reducing the flare-up. I'm not saying accept that this is it, just accept that this is it for now and work through it. In my experience when I'm flaring my fear of the permanency of the situation sends me to a place of utter despair- the only way I can deal with it is to believe "this too will pass".

    You may be aware of the 5 stages of grief? These same stages apply to chronic disease- please take a look at them. You can't rush the stages but at least you'll have some insight as to where you are emotionally.

    I'm praying for all of you, there is nothing worse than the inability to help those you love.

  2. Morning Allie !

    Have you consider that maybe your thyroid medications could explain the swelling ? I don't say that you should quit them, I'm on thyroid medication myself and I appreciate so much the changes... But maybe you could read the fine prints to see if one the side effects could produce such pains. I am on Synthroid since 5 years with 125mg and on Cytomel 5mg, and didn't see a side effect so far, but I know the list of side effects is big and could grown bigger.
    I hope you're gonna find what's going on with your body very soon. Go on with your scrapbooking projects, it's a good therapy.
    Take care,

  3. Oh Allie, I am so sorry you're going through this! I had no idea and my heart is breaking for you! Please, in all honesty, let me know if you need anything. I'm seriously not just saying that. I know we haven't been as close since we stopped rooming together but I do want you to know that I love you and value you. You are such a special person, Allie. I'll be praying my heart out for you!

  4. Praying for you! I really hope you figure out a long term solution for this ongoing problem, would love to get together again and hang out! Our if you ever want to have a movie night in I am always game!

  5. I found your blog on the bucket. Just wanted to say I'm so sorry you're going through this. I'm not going through what you are medically, but am treating for another condition which has be temporarily disabled at this point. If you ever want to talk feel free to pmail me. My user name is desflo. I pray you find a solution.



Like us on Facebook