Atrial Fibrillation Part II

I had my appointment today with my Cardiologist to go over the holter monitor I had to wear for two weeks and about the irregular heart beat that was picked up (Atrial Fibrillation). He explained everything to me and advised me to speak to my PCP about this so that my PCP can give me a referral (to be seen in the department I work in), probably put me on Warfarin, and have me follow up with the referral within a week or less. I was lucky enough that a spot was available tomorrow. I just wanted to get everything started before I have to go back to work next week Friday. I’m not ready however according to the Benefits Specialist who has our documented FMLA hours used replied to my email letting me know that as of May 2nd (when I return to work), I will not have FMLA anymore. I sent him another email just to re-confirm that but instead of asking for that, I asked him if I would be at zero or if I was already in the negative. I really don’t know how this happened since he gave me my FMLA unused balance over the phone before I submitted my TDI forms. When looking at my calculations, I thought I was safe to say that I had two weeks saved up that I would need to last me until mid November when I would need to get the FMLA re-certified.

I’m really not that thrilled about Coumadin, especially at my age. I don’t need to take a medication that is very important to manage as you don’t want your blood to clot nor do you want it to be too thin (especially if you fall and get a gash and start bleeding out). I remember reading someone else’s blog that also has an AFib and on Coumadin medication. If you have this, could you please tell me more about your story. Is it going to make my Lupus worse? Did you notice any more or worsening symptoms after you started the medication? Did you experience any crazy, notable, or merely something you had never experienced before while on Coumadin? I have done some research on it after I received the initial call from my Cardiologist’s nurse but most of it is “textbook” and because I have Lupus, I now know better than to listen to only what the textbook says. Especially since Lupus manifests itself differently in every individual at different levels. And sometimes the textbooks do not mention everything you may experience and Lupus is never predictable anyway.

I liken Lupus to a hurricane. It comes full force at you, devastating every thing that stands in It’s way (any organ, tissue, one’s nervous system, joints), anything and everything it so whimsically chooses. And since everything that I have mentioned are a part of “me,” and possibly “you,” we are essentially under a vicious attack at times. After the first round getting my Lupus and Membranous Glomerulonephritis under control, I was doing much better in comparison to what I had at that time come to terms with as my newly defined “life.” I was eventually told by my Rheumatologist and Nephrologist that I was in remission yet I still had to take a few medications (nothing heavy duty) and all of the symptoms of the disease didn’t go away. However looking back, it was good to still be able to go to work and not have to call in, not needing FMLA for years, and it was no longer necessary at that time to take any of those extra prescriptions that made me feel like I had a “pharmacy” in my kitchen cabinet. Many times back when I was going through my first major Lupus flare, I often wondered if the side effects from the medication was even worth taking it. The pills were supposed to basically slow down the progression of a disease that had no cure and also had the potential to lead to more diseases that have no cure. The Prednisone was the worst for me and as I lie there in bed back then, I just wanted to hurl those pills into the trash. My quality of life was nothing, I felt like I was dying inside, not only physically but mentally and spiritually. I felt like “the living dead.” But finally the hurricane “passed through” and my Lupus ended up retreating for quite a while, I naively believed that I was in the clear forever and just had to deal with different pains (ranging from “tolerable” to “severely cruel and intolerable”), to nausea, exhaustion, etc. It’s crazy how sometimes it takes me a while to name all of the different symptoms I have due to Lupus since I’ve lived with it for so long now. I don’t remember life without all of these restrictions and limitations. After being weaned off all the medication except for the few, it felt like the hurricane was finally over. I was able to do more than I could in months. But just like a hurricane, I have found that it was the eye of the hurricane I was living in while I was in remission. As soon as the eye had passed, the worst part of the storm was quickly approaching to destroy more than it previously did.

I’m not sure if I’ve said this before but I really don’t like people to ask me how I’m doing. I have gotten tired of saying, “Ok,” “better than usual,” “Eh,” “better in some ways, worse in others,” etc. I am through trying to explain to everyone what it’s like to have Lupus and exactly how I am feeling that day. Who wants to hear a “list of complaints” anyway? Isn’t that what it seems to come down to if you have never experienced anything other than good health, maybe bronchitis or a severe cold at some point in your life? Today a handful of people asked me how I was doing, I tried to avoid as many people as I could. My nurse at the Cardiologist’s office knows me and asked me how I felt. Can you believe that she asked me that same question about five times? So I had to find five different answers, or I guess I could’ve used the same one as she was not listening to my very brief answers. It was very irritating at the very least. I’m not excited at all, more so a little afraid and disappointed that I have to start Coumadin. Sometimes I want to get a Girl Scout sash and make illness, procedures, and surgery badges. Mines would almost be full by now. A useless and morbid thought, yet if I get one more diagnosis I am going to scream. Someone asked me the other day if I had Diabetes and my answer was, “Not yet.”

Another beautiful sunrise.

Another beautiful sunrise.

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6 Comments (+add yours?)

  1. jessieefrost
    Apr 24, 2014 @ 00:37:52

    I know how frustrating it can be for people to ask how you are feeling. My recent change in mindset, in which I want the world of “healthies” to better understand the world of “lupies” without any sugar coating has lead to my present bluntness. Typically I over share and succeed in ducting others, scaring them off and venting my feelings all at once. Could work,but least to help yourself? AF certainly doesn’t seem great though! I hope you don’t throw any clots until everything is sorted, strokes are unpleasant!
    Good luck chick x

    Reply

    • mkingr
      Apr 24, 2014 @ 14:35:12

      Maybe that’s what I’ll do next time. Tell them everything in detail and that would certainly make them think twice before asking me again. ๐Ÿ™‚ And it would definitely help to vent. Thank you for the suggestion, I guess I’ll be able to try that real soon. ๐Ÿ™‚

      Reply

  2. Athena OfAthens
    Apr 24, 2014 @ 08:49:18

    Iโ€™ve been nominated for the Liebster Award! This allows me to nominate other bloggers as well and Iโ€™ve chosen you. Hereโ€™s the link to the rules and what you have to do next! http://lyrallya.wordpress.com/2014/04/23/liebster-award/
    -Athena

    Reply

  3. lupusreallysucks
    Apr 26, 2014 @ 02:36:53

    I went through the whole heart thing years ago. For a while I was on Cardia and Nitro. For myself, I have come to the conclusion that all these additional diagnosis are more for the doctors benefit than mine. I have been on Cardia for irregular heartbeat, Nitro for Angina, Synthroid for hypothyroidism, inhalers for asthma….etc. But all of these things seem to come and go, something that would not normally happen if I just had just one of these things. The doctors were really perplexed when, after a year of being on Synthroid, my thyroid suddenly sputtered back to life and I had to be taken off the medication. I have concluded that all of it is just lupus and when it attacks any particular organ it can cause symptoms of all sorts of things….but usually temporarily. So the real challenge for me is sorting out what is actually something else going wrong or just lupus making it temporarily go wrong.

    Reply

    • mkingr
      Apr 26, 2014 @ 11:20:49

      That’s kind of what I was thinking about this diagnosis. I’m just hoping that my INR tests will come out good and they can take me off of Warfarin. I really didn’t want another medication but with the risks and having congestive heart failure a couple of times I wanted to play it safe. I do wonder though how “safe” all of these medications are. Thank you for sharing. It helps me to not worry as much. ๐Ÿ™‚

      Reply

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