Today, I am PISSED. Yes, you read that right. PISSED. I try my best not to get angry with the situations my illness puts me in, but when it leads to discrimination my patience runs out. I saw my PCP (primary care physician) today. It was not a pleasant visit. I left feeling like I am totally alone, and that I should just give up. Then when I got home and started thinking about the entire visit I got angry.
I was there for follow-up with my chronic health issues which we pretend are being addressed. I say pretend because it is a fact that all issues are not being addressed. Generally what happens is the most pertinent ones at that moment are addressed, and the others get put on the back burner. The back burner is where all the underlying issues go. At today’s particular appointment, I needed antibiotics for a sinus and ear infection. For whatever reason, my PCP tried to take the position that there is just no antibiotic he can safely prescribe. Whether this is because of actual concern, or covering his own ass in a “what if” scenario is up for debate. The last several months my gut feeling has been that I am being “handled”. I tell myself that I am just being paranoid because I really don’t want to think that of the PCP I’ve been seeing over 15 years.
(Side note: I have been diagnosed with Common Variable Immune Deficiency. My body does a very poor job at fighting off infections. Antibiotics are a necessity to fight infection, especially since insurance has denied to pay for Immunoglobulin Infusions.)
My PCP’s reasoning for witholding antibiotics is because of the reactions I have had in the last several years. This did not set well with me because I have explained till I am sick of explaining. I shouldn’t have to beg for antibiotics. It all stems from last year when I was put in the hospital with an infection. I immediately started reacting to the normal saline flush, then worse as they pumped me with normal saline IV, and then added Levaquin on to that. The cherry on top was being told by the hospitalist that they would not treat my reaction, and that I was being sent home hours later because they could not give me my daily home antihistamines in the hospital. Since when do we not continue daily medicines just because someone is in the hospital. In all my years as a nurse I have NEVER heard of anything so ignorant and absolutely false. My nurse, who began freaking out during my reaction because the hospitalist would not give her an order for my benadryl, had to go over this idiot’s head to get my reaction treated. Thank God, my reactions typically happen over minutes instead of seconds. So now, because of that incident, and fairly recent issues with one round of penicillin, my PCP out of no where has decided to take the position that there are just no antibiotics that I can take.
Common sense has flown out the window. Never mind that I have had antibiotics by mouth since then that I do O.K. with, those are now off limits according to him. And yes, I have tried taking in educational materials at my appointments. I have lost count how many times I have printed out medical journals and materials from The Mastocytosis Society. I have told them about every single resource that I know of and even requested they call one of the experts. But no one that I am seeing locally has been willing to do anything of teh sort. I continue to be told that you cannot have reactions to normal saline, and that it is highly unlikely I am allergic to the preservatives in meds. They refuse to even put in my chart the reactions I have had to normal saline and certain preservatives, yet all these medicines get slapped on my allergy list. Deny, deny, deny. That is the name of the game, and I am sick of playing. I left with a migraine from the stress after going round & round for an antibiotic.
To deny a patient appropriate treatment for an infection because of their mast cell activation disorder is discrimination. I hear stories like this more and more frequently in patient forums, and it makes me angry. Since when is it o.k. to deny care because of a rare disease or disorder? Since when is it ok to pick and choose what information a patient gives to support a biased fake narrative? If you think I am making this up, look it up yourself. I guarantee you that if you look at any chronic illness forum, especially the ones with rare diseases, you will hear this story over and over again.
My reactions didn’t develop overnight. It has taken years of being sent back out the door with no treatment and my symptoms ignored for it to become this severe. So this is why I am pissed. I am tired of not being listened to or believed. Trust goes both ways. It’s pretty hard to have confidence that a physician has your best interest, or even knows what the hell they are doing when you are told things that you know to be true are not true. It’s completely impossible to trust someone with your life that dismisses your symptoms. And I don’t know what to do other than keep doing what I’ve been doing and praying for an answer. I just can’t believe that the one doctor that has been helpful at all took such an attitude with me today. I shouldn’t have to defend myself or beg for care. It has left me scared and fearful of what is to come. Giving up would be a tragedy, but at the same time it seems to be the only sane choice given the local medical community. When I say I am alone, it’s not because I don’t have family or friends that care about me. It’s because I have no willing physician that will take the time to understand this illness. I have no partner in my care. Trust goes both ways. And, if my physician cannot trust what I tell them about my allergies, I cannot trust their judgement on anything.