Return To The 6th Floor Office

This Morning I had my 3rd appointment at my Rheumatologist’s office. Dr. L is the newest member of my healthcare team and I was sent to him by my Hematologist, Dr. M and my PCP, Dr C.  He dropped a little bit of a bomb on me this morning by saying we couldn’t officially call it Lupus on paper because of how my lab work is presenting. We know it is Lupus, all of my doctors know it is, but on paper for now it is coded as 710.9- Undifferentiated (or Unspecified)  Diffuse Connective Tissue Disease. He went on to say my symptoms and signs are highly suggestive of Systemic Lupus and suggested I bring on a Dermatologist to get my butterfly rash and other rashes biopsied if we want a conclusive diagnosis of SLE. For now though we are calling it Lupus in appointments and we know it’s Lupus, but to my insurance company because they like to have things backed up by positive lab work I have UCTD. This doesn’t change much. He will still see me regularly, I’m still being treated for Lupus, I’m still on Imuran and he took over my  Plaquenil prescription from Dr. C.

He did go over some of my labs with me and what I learned was my ssDNA IgG Antibody was moderately high, but not high enough to declare it high enough for a positive SLE diagnosis.  My IgA immunoglobulins are very high, and one of the things that typically makes this high is Lupus and other autoimmune responses. Normal range for IgA is 69-380 set by the lab that ran these tests, My count came back at 522. There are a few other things that can cause this value to be high such as such as cancer or cirrhosis of the liver or long-term hepatitis, but we are pretty sure none of those apply. Why can’t that value be used to support my diagnosis of Lupus from an immunological stand point to the insurance company? This is so frustrating!!!!

Dr. L wants me to see a Dermatologist. He said if we want a conclusive diagnosis of SLE one way to locate the antibodies may be through a skin biopsy. I’m not sure how I feel about having a chunk of my skin removed in pursuit of the elusive antibodies. The rashes I experience are on my face and arms. What if we don’t find the antibodies on the first try? How many times do we biopsy before we give up and just wait until they accumulate enough in my blood stream to count as positive enough?

How long before I’m sick enough to make my insurance company happy? That is what this boils down to. I’m just starting to get Lupus is how it appears to me. I’m early in the process and not sick enough to really count as far as insurance companies are concerned. Why can’t the diagnosis of Lupus by not one of my doctors but 3 of them and the agreement of a 4th be good enough to make the insurance company happy? Nothing has actually happened on this front, Dr. L is just being an amazing doctor and trying to stay in front of any issues that may occur with them. I know this. It still frustrates the hell out of me.

I spent several hours after the appointment being various levels of upset and angry. I have cried, yelled, cried some more and went through moments of wanting to move my appointment with Dr. C from Friday to earlier in the week. That won’t really accomplish anything other than he’s a comfortable person to talk to, would get my referral to the Dermatologist in place a few days earlier, and would get my INR check out of the way for the week. There’s no real reason for me to move it, but the desire to do so is there. I won’t do it, all of this can wait until Friday and hopefully I will be calmer before then. Today’s appointment left me feeling powerless again. Even after I realized I didn’t have to get the skin biopsies unless I chose to, part of this whole process makes me feel like I’m not in the driver’s seat anymore. In 6 short weeks Dr. L went from yes this is Lupus to we know it’s Lupus but we have to put something different on paper. Briefly it felt like he was giving up on me. He wasn’t otherwise he wouldn’t have continued my Imuran nor took over my Plaquenil prescription but the emotion was still there.

After I got home I logged on and checked what had been added to my file from the appointment, One of the notes that got added to my file from the appointment was Dermatitis from drugs and medicines taken internally. What the hell? First of all. NO. These rashes and skin irritations predate all the medications that I am on. They have been diagnosed as typical rashes caused by Lupus, by none other than Dr. L himself in the past AND his PA… Not to mention Dr. C and Dr. M. So no… No they are not Dermatitis caused by my medications. I’m assuming drugs is being used to categorize OTC medications? I am not a druggie. I have given him no reason to think I am a druggie and he has given me no indication that he thinks I am an addict. I am, however, the child of an addict and wordings of things like this do trigger negative responses from me. I had almost made it back to a happy spot in my day but this leveled me. The tears came back, my stomach flipped and I am pretty much done for the day. I’m going to show this to Dr. C on Friday.  This my friends is part of the reason I don’t like seeing multiple doctors. I’ve already had this talk with Dr. C. Now I’m going to have it with Dr. L. I  have an issue letting people in. This is part of the reason why I haven’t brought this subject up to him and now it seems maybe I should have. I know I mentioned my dad was an alcoholic and an addict but I don’t think I went into the emotional turmoil that it causes me. So I’ll talk to him about it when I return to the 6th floor office in July.

I had high hopes that today was going to be a great appointment. That today was going to be another step in the forward direction and that it was going to be another step to building trust and a lasting relationship with my doctor. Some of that happened. He did prove to me he’s not just hanging me out to dry. He proved to me that he’s willing to do what it takes to get me to prove the diagnosis we know is there. It’s just a frustrating process. Leave it to my body to do things backwards. I should have known this would be the case. Over the years I have had some odd ball medical issues. Of course… Of course it’s going about Lupus backwards as well.

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32 thoughts on “Return To The 6th Floor Office

  1. What a frustrating day for you! It really is a crime how much control insurance companies have over our healthcare.

    I think everything you’re feeling is totally justified. I’m amazed that you are able to hold on to any sense of logic throughout this and yet I can hear if in your words. I’m afraid my emotions would be in charge, if I was in your place.

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    1. I wrote this approximately 6 hours after the appointment. It took me that long to become logical again. I went through various emotional stages in the process. There was a lot of crying in that time. Doug commented at one point that he’s learned after appointments like that…that I’m pretty much done for the day. I lose the ability to focus, to interact, and I pretty much get lost in my head. It’s one of the things I’m seeing my therapist for. I get stuck and can’t get out of it. I lost 6 hours today because I couldn’t get out of my head. I even kept telling myself I needed to and I still struggled so yea my emotions over take me during times like this. BUT I’m handling it better these days than I did in the beginning. Doug also commented that a few months ago I would have just agreed to letting them taking a chunk of my face no questions asked, at least now I am asking questions like ‘is this really worth it?’ and ‘is this something I really have to do?’ He is right. In November I agreed to a couple of extremely invasive procedures out of fear, deep down I part of me knew I didn’t need them, but fear over road reason and I agreed to them. I’ll consider this a step in the right direction emotionally. I agree with bringing a Dermatologist on board, BUT I do not think we need to start taking chunks of my skin off at this time. I’m at least willing to hear what he has to say but I think I want to keep my skin in tact at this time. LOL

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      1. I think you have to take even the smallest step as a victory. And I’m in total agreement with you- let your skin stay on your face for the time being! 🙂

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    1. It is. I’ll take all the personal growth in this area I can get, even if its tiny steps. I’ll talk to Dr. C Friday about seeing the Dermatologist, because honestly he probably would be a valuable member on my team because of the skin involvement but I don’t think we need to start taking chunks of my skin to do tests just yet. I think that might be overkill. In the grand scheme of things it doesn’t change anything, and it really just speeds up the process of what will eventually happen on its own if we give it enough time with lab work. At this time I think it is best if we wait it out. I’m hopeful the doctors agree with me on this. They should.

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  2. You are a very strong person, Nicole. I admire you. 🙂 Stay strong and you will continue on towards good health and happiness. Your story is indeed frustrating. Sending you positive thoughts on your journey. 🙂

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    1. Maria,
      Thanks, I’m teetering on the edge of a better mindspace this morning. Trying to accept that they are just words on paper and that nothing really changed. Lupus has got to be one of the most frustrating things I have encountered though and I wish it didn’t have to be. This is part of why it can take several years for a person to get a diagnosis of Lupus. There’s so many pieces to the puzzle and so many doctors are hesitant to give an official diagnosis without all the pieces fitting perfectly. I hope you have a lovely Tuesday! See you in the Covey! 🙂

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      1. It took me a while to be diagnosed with RA. I remember being mystified about these new pains I was getting. Eventually a rheumatologist gave me the news about my arthritis. Glad to hear it is a better day for you, Nicole.

        I had a lovely Tuesday thanks. It was sunny and had lunch outdoors with my brother. Hope you have a good day as well. I will have more time to read blogs now that the work schedule of 101 is over! See you, Maria. 😊

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      2. The thing is, I WAS diagnosed. Then this last appointment it was like talking to a completely different doctor. All of a sudden he did a 180 on things he had said at my previous appointment. Not sure if he was having an off day or what. He’s still continuing my treatment so obviously he still thinks something is wrong, I’m guessing he’s just wanting to make sure we dot all our i’s and cross all of our t’s. At my previous appointment he said we didn’t need positive lab work to officially diagnose SLE, then at this appointment he said we would need them to have a conclusive Lupus diagnosis. Definitely left me confused and with more questions than answers. At least he didn’t stop my treatments or tell me I no longer needed a Rheumatologist. I see my PCP Friday for my monthly check in and to have my INR checked so I’m going to fill him in on the details of this appointment and tell him I’m completely confused and ask him for his advice on how to proceed. I know he will stand by the Lupus diagnosis, he has been convinced this is Lupus since I switched to his care back in Jan. So now we wait for the one missing piece that will give allow my Rheumatologist to declare it super official I guess.

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  3. Very frustrating to have to go through this when you have already been diagnosed. You have enough to put up with dealing with the Lupus as it is. Chronic pain puts stress on a person and the last thing you need is more stress. Waiting for test results is no joy either. No wonder you are tired of this. I know how worn out I used to be after all the testing. At least you are still on the same treatment and I hope it is helping you.

    Thanks for all the hard work you have done setting up the facebook page for coveyview. I feel this will be an interesting venture. Wishing you a happy day Nicole. 😊

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    1. It is, I swear at times I feel like a walking medical experiment. Then he springs the ‘go see the dermatologist, let him take skin biopsies…may that is how we can find the antibodies.’ on me…Yea….he’s asking me to let this other doctor take chunks out of my face. I don’t care how small or big they may be…. it’s my face. The treatments will do me good, they are the kind that we won’t see full benefit for a few more months. Which is another reason I know he wouldn’t have left me on them if he didn’t truly believe we were dealing with Lupus.
      Covey View has offered me a great distraction during all this so I’ve had a lot of fun working on it. 🙂 Still trying to figure out a few small details behind the scenes
      Hope you are doing well!

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  4. Yes, my treatments took months to be effective sometimes. Distraction is a good thing and the time I put into coveyview helps me, too. If there is anything I can help with please let me know. I think a separate page for communication and a page for posts is a good idea, as you say. 😊. Sitting at the computer wears me out. Sometimes I need to take time out. However, I feel that it is definitely worth it. I don’t have an iPhone and do most of my work on the computer. It’s like you said in your post – sometimes the body just says stop! 😊

    Lovely to chat, Nicole. You are doing a wonderful job at coveyview and with your own blog. Cheers, Maria.

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    1. Thank Maria, I really appreciate it. It does seem that most of the treatments take a while to kick in. Tomorrow I have some writing projects to work on, have a couple of deadlines looming and will have the house to myself (I hate being alone btw, that’s a new thing use to really enjoy my alone time) but I figure I’ll take advantage of the alone time and focus on the articles I have due out. Then I’ll do some blogging as well. I have some reading to catch up on too! Should be enough to occupy the few hours I will be by myself.
      Nicole

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  5. Life has been a bit hectic here. My fridge stopped working and then my brother had a power shortage at our parents house. It turned out that fridge has had it, too. Both fridges were pretty old. So off to shops to buy fridges – one delivered yesterday. Fairly big job changing fridges – emptying out and re-stacking. Really had it when I was finished.

    Will have to do this again later in week when new fridge gets here for my place! 😊. Seems there still is life outside blogging. Lol! I am really enjoying reading the blogs in my reader when I have time. I don’t mind being alone – as long as it’s not for too long! Cheers, Maria. 😊

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    1. I use to really enjoy my alone time. That was before the clotting disorder the Antiphospholipid Syndrome portion of my duo. Apparently having clotting events and a ‘stroke’ in my eye was enough to render me anxious about being alone. I’m trying to move past that, and I know in time I will but for now it still makes me really nervous.
      I’m sorry the fridges went out, it seems there is always something breaking around the house. We had to replace our deep freezer a couple years ago and it was a bit of an ordeal. Not something I want to go through again anytime soon. That’s for sure.
      Oh I should probably add laundry to my list of things to do tomorrow as well. That shouldn’t take too much work though. Hubby cleaned out the dryer vent a couple weeks ago and boy did that make a difference in how the dryer dries! It’s like a brand new dryer again!

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  6. It is not easy being alone when you are not well, I know. Glad you husband did such a good job with the dryer! 😊. I have just done a rough draft for the guidelines for posting in coveyview if you want to check it out and see what you think! 😊. I made a page.

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  7. I am new to your blog, the title really struck me though. Autoimmune diseases are really tough to deal with. First and foremost they are tough to get a diagnosis, the hardest is to live with them. I wanted to comment on your post because you said you weren’t sure about getting a plug of skin taking out. My mother had the same symptoms as you, the butterfly and rash on her arms. When they couldn’t tell positivly she had the plug taken out. I am really glad she did. It has been over 8 years and her Lupus is under control. Meaning no break outs from rashes. I wish you the best of luck and will be sending up some prayers. Doctors sometimes don’t always have the answers. 😀

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    1. Thank you for taking the time to respond to this! I have questions! Did they have to take a plug out of her face? How big of a plug? Did it scar? How long did it take it to heal? Thank you so much again for responding to this!
      My Rheumatologist has left me on the two meds that I’m on to treat Lupus, which to me tells me he is pretty sure it is Lupus otherwise he wouldn’t have left me on them. I’m on Plaquenil and Imuran. Plaquenil is also used to treat my other condition but Imuran not so much. So logically I know he thinks it’s Lupus as well he’s just well I don’t really know what he was doing Monday, unless it was the wanting to make sure we have all of our ducks in a row.

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  8. You are very welcome, these things are really scary. If you have never faced a situation you don’t know what to expect. My moms plug was taken from the back of her neck, I guess really you would say more on the shoulder are right close to the neck. The plug is not big eather. You remember the erasers you put on the top of your #2 pencils? It is only about that wide. I don’t remember how deep though. My moms took a couple of months to heal completely, that’s scab and everything.
    I could try and answer questions the best I can. Have you checked out the Lupus website? It is hard to tell with Doctors sometimes what they are thinking. 😀

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    1. I’ve been reading the Lupus foundation website pretty much every night but haven’t looked up info on the plug test yet. Was still getting over the grumpy that monday’s appointment left me with. Part of that was because that appointment was like having an appointment with a completely different doctor than the one I had been seeing. Seriously it was like an alien had took over his body! The words he was saying just didn’t connect with things he has said in the past. Maybe he was having an off day I don’t know. I have my monthly follow up with my PCP (though I see him more often than that for my INR check) but we get together monthly to go over notes from my other doctors so I’ll fill him in on Monday’s appointment and whine to him about it and get his opinion on things. He’s usually pretty good at making sense out of the craziness that happens with my specialists.

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    1. He’s a pretty awesome doctor! Out of all my doctors I know I can count on him to get things taken care of. I’m definitely interested to see what he has to say about this latest development.

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      1. Yep! Plus I also know if all else fails he will have my back and will continue treatment plans. I try to remind myself of that when I start freaking out.

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      2. That is very true…and wouldn’t you know, I’m paying for it today, joint pain, fatigue and even a mouth ulcer…. I’m half hoping the mouth ulcer sticks around until friday so Dr. C can document it and send a note to Dr. L for me.

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    1. Nance,
      Thank you. It’s been an interesting journey to say the least and will be for a while. I’ll update after tomorrow’s appointment with what my PCP has to say on the latest developments. He’s been convinced this is lupus since he first met me back in Jan, so I’m pretty sure he isn’t going to ‘un-diagnose’ me…It’s a journey and I just have to remind myself that even during weeks like this everything will be okay. I’m still on the meds that are helping make me feel better. That right there is a pretty strong indicator that we are dealing with Lupus.

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