Doctor with the Google Glasses!

Today I had a follow-up appointment with my Rheumatologist.  Some of you may remember my  post about my appointment with  Dr. L  Return To The 6th Floor Office back in May. To summarize briefly in that appointment we talked about the frustrations of insurance companies, he asked me to see a dermatologist to have my skin biopsied to confirm my diagnosis of Lupus that way.

I did, see a Dermatologist by the way,  on Friday. It was a mostly uneventful appointment, except for the prescription of a very expensive steroid lotion I am to use the next time my rashes appear. When I say very expensive, retail value is $415, Thank goodness I have insurance that allowed me to bring it home for $5, otherwise it would have stayed at the pharmacy. I am also to Dr. W  immediately so they can get me in for biopsies. He did review the pictures I keep of my rashes and he concurred, they are lupus rashes.

Now back to today’s appointment. To say I was nervous about today’s appointment is an understatement. It started Thursday. I had received a call on Thursday from someone in his front office stating they no longer accepted my insurance and that my appointment was canceled. After a very panicked 10 minutes the same woman called back saying she had made a mistake and that she had added my appointment back to the schedule.

When we got to the office this afternoon I mentioned this to the check in lady, and she just laughed it off. I had already decided I was going to mention it to my doctor so I didn’t press the issue.

After a short wait I was called back by my doctor’s awesome nurse. Aside from the front office staff, the staff at his office is plain awesome. She checked my vitals, reviewed my meds. Then she looks at me and says “Dr. L will look a little different when he comes in today.” “Oh?” I questioned. “He will be wearing google glasses, here you can read about them while you wait for him.” she handed me a flyer excitedly and then exited the room. I handed it to Doug so he could read it while I   filled out this little form I have to fill out at each appointment about my pain level, how it has impacted me the past week, and how all parts of my illness have impacted me. Then I read it. They are implementing them to help decrease the time their doctors have to spend behind computers and to increase the time they get to spend with their patients. Basically there is a small camera and microphone in the google glasses and they transmit information to the doctor’s assistant who can then enter the information. The assistant can also feed information to the doctor during appointments that helps them to better assist the patient without the doctor having to dig through files and the computer, or having to leave the room to research. They haven’t fully integrated the system yet, but it sounds pretty snazzy.

Dr. L came in and we had our usual appointment and I told him about my sun-induced flare in June, we talked about increasing my dose of Imuran briefly but decided not to. He then did the Jointman exam, which involves him squishing my joints and then going to the diagram on the computer and marking which ones are tender and/or swollen. After that we talked about other aspects of my illnesses. He then told me what labs he was ordering for the day, just general lab work today, and that he would see me back in 3 months.

Before we parted, I told him what had happened with the phone call. As you can imagine he was not happy. He listened, said that was unacceptable, and that there was not an issue with my insurance marked in my file. He then brought in the manager of the department the issue had originated from, it was discussed, and it will be handled. The lady I spoke with today was very apologetic, She assured me that my insurance was definitely accepted at their office, and they had a great contract with them so she had no idea what they person who called me was thinking. She also said that is not how things were handled when there were insurance issues either. That if one ever arises I was always given the option to remain a self pay patient, and that I would not just be dropped as a patient as this woman had tried to do.

All in all this appointment definitely eased my mind in a lot of ways. I know I’m in good hands, and it let me know that Dr. L will stand up for me when there is an issue. There’s a lot to be said for a doctor that is willing to do this. It can be rare to find that quality these days. My next appointment is at the end of October with him. Maybe I can talk him into letting me wear the Google Glasses next time!

 

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Dear Lupus Flare

Dear Lupus Flare,

Hi there. It appears we are getting to know each other real well this week. I get it, trust me, I got the memo, YOU are not a fan of the sun, or stress, or maybe even the chickpea salad that I made over the weekend  that was oh so tasty. Please stop. You put me on notice. I’ve listened, I’ve lessened my time outside, I’ve even seen my doctor 3 times this week because of you.

I wish you or someone could explain to me why you are messing with my INR so bad. It had been so stable for almost 2 whole months. What gives? This past week you caused me to have THREE INR tests, at THREE different appointments on THREE different days. Monday was low enough, 2.4 isn’t cool man! Tuesday showed hope of rebounding when I was back at the office. That’s the day we figured out we were dealing with you. Dr. C gave me the option of starting Prednisone at that point or riding you out and letting you pass on your own.  I didn’t take into account that not all flares show up as pain. At least we figured it out. At that appointment Dr. C said to come back Friday (Monday at the latest) to see Cindy for my INR check. I chose to keep in on Friday since my INR was low the previous day. See…. I’ve already learned I can not trust you.

My choice not to start Prednisone on Tuesday was based on the fact that my INR was 2.7 on Tuesday so I thought, ‘Meh, if the pain doesn’t get any worse, I’ll leave things be.’  That was a mistake on my part, trust me….that mistake will not be made again.

Wednesday, was crap. If I hadn’t of known better I would have sworn I was coming down with the flu. I felt like utter poop. Thanks for that. I got a lot of snuggle time in with my pets, caught up on emails, and got some quality chat time in with some friends I hadn’t talked to in a while. So by sidelining me you actually helped me slow down enough to catch up with the loves in my life. Thank you for showing me I need to slow down. Thursday came and I didn’t feel much better, less flu-like, but still ran down and crappy. I mustered up the energy to shower and prep my meds for the following week, ate meals and well that’s about it.

Friday morning arrived and we headed to see Cindy. You can imagine (no you can’t) my frustration and disappointment when I saw 2.3 on the screen as the INR machine finished processing my result. After reminding Cindy this was way too low for me, (Remember my Range is 3-3.5-4ish? Yea) She went and grabbed Dr. C. I felt horrible, I was supposed to just see her. I wasn’t on his schedule and then all of a sudden, here I was a random patient added to his probably already busy schedule. I can’t begin to express how appreciative I was that he was willing that do that. I know there are plenty of doctors that would not of. Luckily my doctor….is not like most doctors.

He came in, talked to me, decided to call and involve my Hematologist in the process, and all of a sudden two doctors were being involved in this issue. Do you understand why this frustrates me? (I know you don’t). He had called Dr. M to see if we should do a Lovenox Bridge to tide me over while my INR rebounded. Lovenox is a different anticoagulant that works on a different clotting cascade that does not react to Vitamin K and the other things that Warfarin interacts with. His thoughts were, it would be sort of like an insurance policy while I came back into range. There are several issues though. Even with insurance, its expensive, it would be 1-2 injections I’d have to give myself a day, bleeding risks are slightly higher, and I’d have to come in for at least 2 more INRs in range before I could come off of it. So in a way it was great news when Dr. M said we didn’t need to do the bridge. Apparently with my Anticardiolipin Titers as low as they were last time, I am at a lower clotting risk right now. So at least that is good news. So we decided I’m on 17.5mg until Monday and I’ll see him then to get my INR rechecked.

Oh, did I forget to mention…..the  Prednisone? Yep you are on notice Flare. Your days here are numbered.

Goodbye at the soonest and no love,

Nicole

In the Lupie-Loop Edition #2

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.

Left to Right: Nicole, Mellow, Doug, Miranda, Jenica, Nails of Penny, Paula,
Left to Right: Nicole, Mellow, Doug, Miranda, Jenica, Nails of Penny, Paula, Nakul

Yesterday was Lupus Awareness Day AKA Put On Purple Day. So we did just that! I also put out the word on my Facebook Page, blog, Twitter and to several friends that it was POP Day and a few of them chose to take part in the day with me! Here are some of their pictures.

The first 3 pictures are of me, my husband, and my best friend Doug. We are wearing shirts that we made! Pretty awesome right? Mellow and Doug are my main supports and have been through the toughest days of all this craziness with me. Without them I am not sure how I would have made it to this point. I truly am blessed to have them in my life.

The lady in the spiffy purple dress suit is none other than Miranda, one of my closest and longest friends. We’ve been friends since we were 5 years old. That’s 25 years and counting! I will admit to shedding a couple of tears when I saw this picture. She’s head to ankle in purple for me! I love this woman to pieces!

Jenica wore purple scrubs to show support! I have known this lady since college. We bonded during a class trip to DC and have been close since. She has Fibromyalgia so she understands the chronic illness dance and has been one of the people I have leaned on the a lot during all of this. She’s always sending me funny texts or snaps to brighten my day. It never fails no matter how busy she is, she finds a moment here and there to let me know she still cares and is there. She’s awesome!

My friend Penny painted her nails purple for POP day! We actually met online a few years ago and became good friends. She always makes me feel comfortable talking about Lupus and APS and never makes me feel like I’m being judged. I’m forever grateful for that. Plus we tend to have a lot of fun when we hang out. We can always find something entertaining to do.

This next lady, her name is Paula. I’ve only known her for a few months, but let me tell you she has become a good friend of mine already. I met her in an online support group for APS. Through conversations we have gotten to know each other and have become friends. We both were diagnosed with Lupus almost at the same exact time. We talk a lot about everything and she’s always there to remind me to keep going. She’s pretty awesome and I’m grateful to have her amongst my supports.

I met Nakul from the blogging course I did earlier this month. After I made a blog post stating that I was going to wear purple he contacted me and said he intended to do so as well. I asked him to share his picture with me and he posted it to my Facebook Page. I hope you will take a moment and check out his blog, Eat All Fresh. It is a wonderful blog about cooking and eating fresh food.

I am estatic that these folks took part in the day along with me! I know from my own experience that it made a difference. At dinner alone I had two different conversations about Lupus. The hostess asked me what Lupus was and I explained what it was. She had never heard of it before. I told her I had it, and she said she was sorry. Then when the waitress got to the table she asked if we were an organization and I told her no, and explained why we were wearing the shirts. She then told us that her mom had Lupus. I asked her how long and she told us that her mom had been diagnosed with Lupus around the age of 30, the same age I was! That seems to be a rather common age of diagnosis I am seeing.

Overall yesterday was a fantastic experience and I am glad we took part in Put On Purple. I can’t wait to do it again next year. Every little step to raise awareness is one step closer to better treatments, and hopefully one day a cure.

 

 

Lupus can be an expensive disease to treat. Average annual direct medical costs exceeds $20,000, with the average increasing to $63,000 if the kidneys are involved.

A few Quick Facts:

  • Lupus is an autoimmune disease.
  • Lupus can damage any organ in the body.
  • Lupus can cause life-threatening consequences.
  • Ninety percent of the people who devPostselop lupus are females.
  • It can take several years to get properly diagnosed
  • There are 11 diagnostic criteria for Systemic Lupus
  • Not all people with Lupus have the Butterfly Rash but it is fairly common in Lupus patients
  • Positive Lab Results are not required for a diagnosis of Lupus (I did not have positive SLE antibodies at the time of my diagnosis but I have Lupus)
  • Lupus is not contagious

 

How can you help?

Visit Lupus Foundation of America for a few ideas on how you can help raise awareness, volunteer, find clinical trials and other ideas to help those suffering from Lupus.

 

 

Don’t forget Put on Purple Day  is coming up on May 16th! Wear Purple to show raise awareness and support for those affected by Lupus! If you decide to participate  I would love to see pictures of everyone participating! On the 16th I will post a picture of myself in my Purple Shirt, If you would like please comment on that post with links to your pictures.