When I last left off, I was diagnosed with two immune problems: too many allergy antibodies, and not enough infection-fighting antibodies. We decided to address the allergy antibodies first and hold off on treating the infection-fighting antibodies. It was made clear by my nurse practitioner that my lack of infection-fighting antibodies is more correlated with stress than most people. The more stress, the fewer antibodies I produce. It is very important for my immune system to reduce stress as much as possible, and I would possibly be able to avoid having antibody infusions or injections.
Stress reduction in order to live. No problem. Especially with two children adopted from Africa in the last year, and a husband who works four nights a week and all day Saturdays and Sundays, in addition to me working full-time. Still, it was manageable.
Then my boss resigned. Not the one that was diagnosed with the brain tumor, the interim boss after that. He’s giving plenty of notice, and is definitely being helpful, but it’s become clear that I need to step up my responsibility at work in a very short period of time. There is no one else in place at this point that can do it. But I’m still pretty sick.
Stress reduction in order to live. Now it’s a problem.
So I went back to my allergist/immunologist physician and did nothing short of beg for IgG antibody replacement. It was really rather pitiful, actually. But in my perspective, I’m somewhat begging for my life and my job, which are both pretty important to me. I cannot stop my children from bringing home viruses and bacteria from school. I cannot quit my job. The only variable is giving a boost to my immune system.
He said no.
Now, in his defense, he has never seen me sick because I only see the NP when I’m sick because he’s booked months in advance. And in his mind, because I was about to get anti-IgE Xolair, he didn’t want to do two immune therapies at once.
He told me, “You just need to work on reducing stress in your life.”
I kind of wanted to punch him in the face. With the love of the Lord. And maybe call down some fire and brimstone. And tear up the $600 bill he’s going to send me for that sound advice. And mail him the pieces.
This week, I finally got my first injection of Xolair, which will reduce my ability to have an allergic reaction, although it takes several months to really see the benefits. It’s a two hour process to get the injection and then you have to see a medical provider afterwards, all the while having lots of vitals taken, peak flows measured, and a nurse giving you the stinky fish eye across the room because Xolair has a surprising side effect of causing anaphylaxis. I felt a little yucky and had some blood pressure issues, but I lived.
So three hours after my Xolair injection, I met back up with the NP who has been seeing me. I blabbered on about all I’ve been through, and the changes in my responsibilities that have occurred since we last talked. She believes I should start IgG and wants to start the approval process. She has seen me really really sick. I have scared her on numerous occasions. After all, no one is more stubborn about asking for medical help than a medical provider themselves. She is going to talk to her supervising physician (my doctor) and see if she can get him to change his mind.
Meanwhile, I start my third month of running a fever. I start my seventh month of having a productive cough. I wash my hands even more obsessively than before. I avoid crowded places with coughing people and perfume.
And I wait, stuck in the middle between two medical providers and what they believe will make me well.
2 thoughts on “Stuck in the Middle”
This makes me go crazy as I read through this! Please Lord heal our beloved Robin (even if she does want to punch her dr in the face!!) or move mountains to give her the medical care that her body needs. We love you, Robin. We are praying for healing! Thanks for the update–we’ve been wondering how you have been feeling.
JoEllen (and Burke too!!)
If you haven’t done so already, you need to look at Protandim. People with totally messed up bodies are finding tremendous help. http://www.ABCLiveIt.com is a 12 minute Primetime investigative report. I hope things go “weller” for you today!