“I want you get better, Mommy. I want you with me.”

Yesterday my babies came to visit me at the hospital. I’ve been here since Tuesday after my flare became so severe I was extremely dehydrated and writhing in pain on the floor. Before they left my little one asked me if I still had boo boos in my tummy and then blurted out the quote above. 

He’s 3. 

My heart breaks to see my children worry for their mommy and it aches for their hugs and kisses. Being separated from them these last few days has made me feel so isolated. It’s as if I’m missing an arm or a leg. 

Tomorrow I will get to go home. Tomorrow I will be with my babies. Tomorrow.




Think Of It As A Vacation

Saturday morning I woke up with a migraine. I’ve never had one before and it freaked me out. Due to the UC, I cannot take any over the counter pain medication but Tylenol. As you can imagine, that does little to relieve a migraine. Throughout the day it became progressively worse despite the fact that I slept most of the day. By 5pm it became so painful that I had tears streaming down my face and my skin was crawling. I begged my husband to take me to the hospital in hopes that they would give me something for the pain.

We dropped my boys off in haste to my parents and rushed to the ED. Once I had settled in and explained myself no less than 57 times and rattled off my list of medications another 43 times, they settled on a CT scan, a chest x-ray and a spinal tap for testing. See, due to the Symponi injections and Prednisone, I am at a higher risk for infection and specifically, meningitis.

Now, when you have a lumbar puncture done (I.e. spinal tap), you receive preliminary results within an hour that give you some idea of what the spinal fluid contains. But, to receive the full work up of what’s in there, you have to let the culture grow for a period of time which could be anywhere from 24-48 hours.

My preliminary results showed elevated white blood cells. Typically, for someone without my medical “complications” as the ED attending so aptly put it, that would indicate an infection of the spinal fluid. Because I am on all the medications that I’m on, the elevated white blood cells could just be from the drugs themselves. Because of the unknown and the risk of infection that my medications put me in, the doctors determined that they’d like to keep me overnight and allow the culture time to grow just to rule out meningitis. I had no other symptoms of meningitis (stiff neck, light sensitivity, unable to move limbs without pain, vomiting, dizziness, etc.) but they wanted to be extra cautious due to my medical history.

It is now Monday evening at 8:47. I am still in the hospital. The infectious disease doctor finally came in to examine me today. Upon this examination he quickly came to the conclusion that I do not look to be a patient with meningitis. I’m not sure if it’s the walking around by myself and having literally no symptoms that tipped him off but he looked at me and said, “I have seen many many patients with meningitis and you are not one of them. The cultures are still out but they will be negative.” I said, “Awesome. So I can go home right?” He told me, “Well, this is the first time I’ve seen you myself so I’d like to respect the other doctors decision to keep you until the results come back.” *insert me with a very confused look on my face*

So in short, I have now spent three nights away from my children and still have no promises of when I can go home. Tomorrow, I promise I will discharge myself if they don’t. I was on board with being cautious the first day but at this point it’s ridiculous. I haven’t had a headache since Saturday night and have had no other symptoms the entire time. This is basically just a waste of money and resources. Everyone keeps saying to me, “Think of it as a vacation!” I’m sorry, but I don’t go on vacations to places where they wake me up every two hours to check my blood pressure and poke me with needles, monitor my urine, and serve me extremely bad food, do you?

I hope you had a better weekend than me!