So…… In 2009 I had an unexplained Pulmonary Embolism originating from a DVT. Yes, it was scary. Yes, it was painful. Yes, it was awful… and Yes, I’m lucky to be alive. However, this is a blog for another day. I mention this because as I share the latest on my current health saga this will become important background information. From here on out I will refer to this event as a PE; typing Pulmonary Embolism isn’t very fun. I’m going to tell you about my day on Tuesday. It would seem that I get either one of two extremes from my trusty health care professionals. They’re either going to pieces over, what I would call, mild symptoms… or they are ignoring, what I would say were the more pressing issues. I’ll elaborate, but first I must begin with the fact that I’m sick.
OK, I know, you know, that I know I’m sick. However, this time I ‘m not talking about the chronic kind, I mean I caught a bug, more specifically, bronchitis. Not good when your immune system is confused and not really up to par. I’m not entirely sure how I managed to catch these nasty little critters but I’m not surprised what with a compromised immune system and all. I suspect that my children, whom I can’t very well keep home from school, were the carriers of this infirmity. My suspicion is that my infection was passed on to me by my little “bug traffickers.” It probably happened something like this. “Hi Mom, I’m home from school.” The “bug trafficker” approaches and reaches for a hug and a kiss, equivalent to him saying “Yo Mom, I’ve got somethin’ nice for ya’ right here!” That’s how I imagine it anyway, not having any real experience or street cred in this area I could be wrong. Commence the deadly hugging and kissing all wrapped up in two cute little packages that I just can’t resist.
Here I am and for the first time in a week I can actually think straight. Well… not really but we’re going to attempt to update you with a blog post. Oh this is a bad sign, I’m referring to myself as a “we”. Maybe I’m speaking for the “we” that includes all of the bacteria that have settled into my chest. I haven’t showered in… well, DON’T JUDGE ME! Showering with RA and AS has become difficult and painful anyway, add the aches and pains of illness on top of that? I SAID DON’T JUDGE ME! I feel as if I’ve been hit by a freight train, trampled by some cows in the adjacent field, followed by a moose (not sure where he came from) who is now sitting on my chest. Add to that the fact that they gave me cough medicine with codeine and I think I might actually be hallucinating as well. Not that the codeine is the culprit, it’s the codeine in conjunction with the prednisone, neurontin, and so on… You get the picture. Drugs interacting with drugs and I’m not sure whether or not I should put my pants on my head and tie my shoes over my ears or just not bother getting dressed at all.
That is today, yesterday and the day before were 100% worse. Can you imagine? Me either, except I was living it. Ugh! I was thinking of going to the Dr on Monday but when it came right down to it, I just couldn’t even drag myself there. Pathetic… So yesterday, that would be Tuesday I guess, I made an appointment with my GP. Only having a week of this under my belt, usually you run the risk of going in for a visit and having them tell you that it’s viral or hasn’t progressed enough for them to justify antibiotics. I get this lecture all of the time and it makes me crazy! I see where they are coming from but if they only knew how many times I chose not to come in because I knew it was just a cold. I know my body better than that! It is aggravating because every time I go in seeking antibiotics and they give in to my request, lo and behold, I feel better within 24 hours. Who knew!?! Seriously, I need to write a book for medical practitioners about how to really listen to their patients and appreciate that we might actually know a little something about our bodies. Besides, it’s not like I’m sitting there with the shakes begging for narcotics. I digress…
This day was a little different. I got the opposite end of the spectrum. These days when they see that I am taking Humira and prednisone they are immediately inclined to treat me with something, even if it is viral, because it can easily get out of hand when your immune system is… “under the weather.” Additionally, because I’ve had a PE, anytime I mention that I feel tightness in my chest, everyone PANICS! They must have my chart flagged because the scheduling center asked what they were seeing me for and I mentioned that I had a cough with cold / flu symptoms. The operator asked for my name and after a few seconds of silence she says, “hmmmm I think you’d better speak with a nurse.” Eye rolling ensues because I know exactly where this is going. Now, I can’t really blame them. After all, a PE is a very serious event, but I think by now I know what one feels like and can tell the difference between that and a bacterial infection.
The nurse comes on the line and is asking all of the leading questions that I must have answered a million times over by now. “Are you having tightness in your chest? Is it worse when you’re lying down or sitting up? Can you breathe deeply without any difficulty? Have you experienced any injury or trauma in the past week?” The list goes on. Some of these questions are difficult to answer when I know where they are going because I’m thinking to myself, “Um, when you have bronchitis your chest feels tight.” However, I know the minute I mention this, the dreaded ER will creep its way into the conversation. If I answer that my chest is fine though, how will I get the help for the bacterial infection ravaging my lungs? Oh the rocks and the hard spots, will they ever go away? So I answer by stating that yes there is tightness in my chest but I feel that it is due to the fact that I’ve had cold symptoms over the past week.
Silence on the other line… Here it comes… “Well according to your chart you’ve had a PE and you’re no longer on a blood thinner regimen so I’m thinking that maybe I should send you to the ER.” My heart starts pounding, self-doubt creeps in, and I have to remind myself that I’m sitting there perfectly fine other than the fact that I’m crawling with irritating microbes. So I stand my ground and tell her that I’m sure that all I need is an appointment with my GP. After utilizing my considerable haggling skills, she tells me that if I PROMISE to keep my appointment she has an opening at noon. Then she adds the ominous caveat, “They may still send you to the ER, so be prepared for that eventuality.” Oh sheesh! So commence the phone calls for help with child care etc… What do you say? It is so unfair to those I impose upon to help because I can’t really tell them what is going on. I called around to a few of my wonderful and ever willing helpers but no one was home. So I decided to take my youngest with me.
I must take a moment to share a word about my lovely children. They have had to accompany me to so many Dr appointments that it is just a way of life for them. I get comments about how well-behaved they are and sadly I think that it isn’t anything I’ve instilled in them, rather it is probably due to the fact that they’ve had to sit quietly through countless Dr visits. The part that saddened me the most on this day was that Alex had to miss school. He’s had to miss preschool at least twice in the past two weeks because of my health and that just breaks my heart. Ever positive and full of sunshine, Alex didn’t seem to mind, but I did. The ugly “mother guilt” reared its head. It hurts that my kids have to sacrifice so much on my behalf. A quick visit to the candy aisle in our grocery store helped but deep down I knew that candy was never going to make up for the fact that my health takes it toll on everyone around me just as much as it does on me.
I went to the appointment with fingers crossed that the Dr would keep his wits about him and just give me antibiotics without a fight. I definitely didn’t want to head to the ER either so I was determined to keep it from the conversation. Of course he was running late and by late I mean an hour and a half! This makes me so mad because you know that if you were to walk into your appointment even 15 minutes late you’d run the risk of being turned away and charged a no-show fee. Not so when the Dr is the one behind schedule. I was somewhat mollified when they brought Alex some grape juice and cookies, a happy five-year old makes a happy mama! The Dr comes in, takes one look at me, and says “You look awful!” To which I respond, “No offense, but I only come here when I feel awful…”
Long story short, thankfully he was on my side. Yay for me! I avoided the ER, again yippee me! And because of the Humira I didn’t even have to lobby for antibiotics! I couldn’t get out of there fast enough. Every nurse I passed looked at me as if she might call an ambulance any moment. Remind me to at least do my hair and put mascara on next time I go, I hadn’t realized just how “awful” I looked. It must have been bad because when I stopped at the pharmacy they looked at me as if I might crawl over the counter in full zombie mode and attack them in like fashion. Maybe a quick mirror check would be in order before I leave the house again.
So there it is in all its glory. My update for the week, hope you enjoyed! I sure did… I think… I’m not really sure. That’s what I get for writing while under the influence of “bugs.” I’m off to bed where I obviously belong until I’m no longer in danger of scarring little children for life!