Relationships are complicated enough, but adding chronic illnesses into the mix increases complications exponentially.  In fact, being bitten by the love bug leads to all sorts of symptoms, side effects, and potential complications.

It’s been a long time since I’ve let myself like a guy.  So imagine my surprise to find myself with a good old fashioned crush on someone.  But I have all the symptoms of a crush.  Fluttering in my chest.  Racing heart.  Warmth in my cheeks.  Funny feeling in the pit of my stomach when I think about if he might like me back.  But it’s also brought up a lot of confused feelings – some not so pleasant.

I feel so inadequate because of my illness.  Why would he want me when he could have countless girls who are whole and healthy?

Dating me would mean dealing with all my limitations that even I don’t want to deal with – side effects if you will.  It would begin with setting the date pending me feeling up to attending.  Not being able to keep plans because of my illness has caused problems even with my closest friends.  Breaking a date wouldn’t exactly be the way I’d want to start a new relationship, but the possibility is a reality that would come with dating me.  Then when he’d pick me up we’d have to lug my wheelchair or walker on the date.  The first thing I want to explain to him would hardly be how to assemble my wheelchair.  At dinner he’d get a full education on my eating difficulties as I filled the waiter in on my food allergies and took pills with dinner that would allow me to digest my food.  Sounds like a pretty mortifying first date in all honesty.

I worry that I wouldn’t be able to do his favorite activities with who ever I date.  I can’t even do my favorite activities anymore.  I can’t go hiking or horseback riding or play tennis.  What if physical activities are an important part if his life?  How would I ever share that with him?

And then there’s the issue of feeling inadequate due to my appearance.  I’ve put on 150 pounds from being on steroids (Prednisone) to control my autoimmune diseases.  Though I’ve now lost a small portion of it, I still feel so physically unattractive.  Not to mention the horrible acne and hair growing in strange places the same medication has also caused.  I so desperately want to be thin again and have clear skin again if only so I will be physically appealing to guys again.

Then if things do work out after the initial shock of dating someone with chronic illnesses, there’s still all the complications that can arise down the road.  What if he gets tired of dealing with the day to day struggle of my illness?  If we someday get serious and get married, the reality is that having children and even sex itself can be difficult with a chronic and painful illness.  If we did have children, would I even have the energy to raise them?

I know.  I know.  Now I’m getting way ahead of myself.  But I don’t really know what else to say.  It feels like nothing I can say will explain how horribly inadequate my illness makes me feel.  I barely have the energy to be a good friend sometimes let alone a good girlfriend.

I hope that someday I find someone who can look past my illness and see me.  But until then I can’t help wishing that the love bug didn’t even bite me in the first place.

Appearances can be deceiving with a chronic illness.  Looking at a person you usually can’t even begin to see what they are going through.  Sometimes even your doctor can’t see what’s right in front of them.  Sometimes you have to spell it out for them.  Especially when you have a lot of symptoms and medical problems, I’ve found it extremely helpful to bring your doctor a printed list summarizing your medical history and list of symptoms broken down by category.

This serves another purpose as well.  When you have an unexpected and most unwelcome flare of autoimmune pancreatitis pain, you can distract yourself by making it into art while you wait for your pain meds to kick in!

Head over to Wordle to try it out for yourself (and feel free to link me in the comments).

Today a nurse told me I should live in a bubble.  She came to this conclusion because of all my allergies when I asked her to remove all the latex from the exam room before I entered it.  She seemed only half kidding.  She went on to interrogate me how I manage to survive going into public places.  Ouch.

I do have some very severe and even life threatening allergies.  It took multiple trips to the ER and at least twice that in doses of epinephrine to figure out I am severely allergic to yellow dye.  That one is very difficult to deal with.  It’s in everything… foods, medications, cosmetics.  And no one has ever encountered my that allergy before… especially not on a life threatening level.  I must check every ingredient on everything.  I often speak to the managers in restaurants to ensure that the food won’t contain any yellow dye.  Often I get them to bring out the ingredients that go into the food if they come in packages so I can check them myself.

It took two reactions to the pain medication dilaudid before my doctors and I figured out that it was the medication that caused my throat and air passages to swell until I was gasping for air.  Fortunately, on those occasions, several doses of epinephrine, benadryl, and steroids were able to get that under control and I was able to go home from the ER the next day.

As frightening as all those are, it’s my allergy to latex that scares me the most.  Latex is everywhere… especially in medical settings.  And having spent so much time in the hospital, I’ve had plenty of opportunities to be exposed to latex and increase my allergy to the point that merely getting to close to it could cost me my life.

I discovered this about a year ago while I was in the hospital for a flare of my pancreatitis.  I hadn’t been able to eat for several weeks so I had a procedure to have a feeding tube inserted.  When I woke up in recovery after the procedure I felt like I was drowning.  I couldn’t breathe.  I could barely talk but I managed to let the nurse know that something was very wrong.  Since I was still coming out of anesthesia I passed out again.  When I woke up the next time I was surrounded by doctors who were asking me if it was ok to put a tube down my throat to help me breathe, poking me to get blood gasses, giving me tons of different medications none of which were helping.  As I lay there fighting harder and harder to breathe, running out of the energy to continue, I really thought that I might die.  Each time I woke up there seemed to be more doctors standing over me.  I had never been so scared in my life.  When I woke up again I was being whisked off to the ICU.  I was started on drip of epinephrine and put on a machine to help me breathe.  That finally seemed to turn the tide for me.  I spent that night in the ICU, and the next morning I found out that the whole ordeal had been caused by me breathing in spores of latex from gloves being used on the patient next to me.  I still have nightmares about it.

Living with life threatening allergies is all about preparing and checking.  You’ll all be happy to know that I’m going to be starting my new medication Rituxin on the 17th of this month (being provided to me for free by the drug company itself).  The scary part (aside from the potentially life threatening side effects of the medication), is that I’m going to be getting it in a room full of other infusion patients.  In other words, there will be latex EVERYWHERE.  However, I’m making special arrangements with the head nurse of infusions to make sure that I will be as safe from latex exposure as possible while there.

Which brings me back to today.  Now where ever I go I make sure latex leaves before I enter.  Gloves, balloons, rubber bands, you name it… it all has to go.  And if god forbid something goes wrong I always have my epipen which should buy me enough time to get to the hospital.   Because despite that nurse’s rude comment, I don’t plan to spend my life in a bubble.  Life is way too short for that.