6th Floor Office Appointment Notes.

Into the parking garage to park. Down one elevator, up the next. The familiar pattern leads us to my Rheumatologists one office and to the doctor that I have slowly realized everyone else defers decisions to and is more concerned with. The weirdest adjustment I’m dealing with right now is that since getting a Rheumatologist, everyone wants to know what he is saying, what his decisions on everything is.They are much more concerned with who my Rheumatologist is. It seems like an overwhelming amount of power of my care lies with this individual. This in turn is requiring me to learn to put a great deal of trust into him. Slowly I’m getting there. After being “burned” by a few doctors in the beginning of getting sick,  I find it harder to blindly trust doctors these days so it takes me a while. Each appointment though I get closer to being comfortable with the amount of trust I must have in Dr. L.

Last week I had my 1st Rheumatology Appointment of 2015. Overall it was a positive appointment, Dr. L was in a great mood and we covered a lot of the concerns I had with my conditions and medications. My Rheumatology appointments tend to cause me more than the other doctor appointments but this one went smoothly and other than the fact that I am still waiting on pending lab results, which has me scratching my head a little bit as they are marked as received. Hopefully soon I will be able to see the results as well.

I went over notes from my last flare with him that happened back in Nov. and how Dr. C and I handled it, he was okay with how things played out. If I should experience another once before my appointment in May I am to try get into see him. If not I’m to document it with pictures and such as best I can. I told him about the rib pain I experience during flares and he made sure it wasn’t my liver or gallbladder (I tried to tell him I was sure it wasn’t). He wanted to be sure. I also experience a cyclic flare in my joint pain that coincides with my menstrual cycle so he wants me to try taking Naproxen beginning mid cycle (or thereabouts) to stay in front of the pain to see if that helps prevent it from getting too bad. We went through our usual sequence of the joint squishing and I was happy to be able to tell him I was in less pain than previous appointments.

I talked to him about my desires to walk in the Lupus Walk in May and he told me that would be great, as long as I remembered to wear my sunscreen. Which made me realize why they hold the event in the evenings… D’oh!!! Sometimes my brain takes a little time to process. haha!

I’m pretty sure he was on a mission to see how many times he could say Lupus during my appointment. He issued a reminder that my INR was better off being kept 3-4 and that he would send a note to Dr. C stating his thoughts and notes from this appointment. Fair enough. Hopefully those notes will reach Dr. C before my Follow up with him next week. That would be helpful.

We discussed the fact that azathioprine was a little difficult to refill last month and that the pharmacist said I may have to switch medications due to the shortage. He didn’t seem a fan of that thought process, and neither did I. So he called me in more refills of it and the plan for now is to continue on that path unless we heed to go another direction. The medication is working well and I am for the most part stable. That is something to be happy about.

My next appointment is an 8am appointment in early May. Hopefully he will be in a good mood then as well! He is rather hilarious when he is in a good mood!

Good News from the 6th Floor Office

Last Monday, October 20th,  I had my October Follow-Up with my Rheumatologist, Dr. L. It was a late morning appointment. I recalled vividly the checkout lady cheerfully telling me that it was ‘the best time’ to have an appointment at their office. I have to say I disagree with that sentiment. Getting into the parking deck was anxiety inducing. The two cars in front of us, seemed to be lost and just stopped, dead in their tracks causing a back up at the entrance. Have I mentioned I’m not a fan of parking decks/garages to begin with? Yea, I’m not. We managed to get around them and went a different direction from the lost ones to find a parking space. Then we headed to the first elevator. Down to the first floor lobby of the medical plaza, that is also connected to a large hospital, we made our way. Then across the lobby and to the second set of elevators so  we could go up to the sixth floor waiting room.

I was excited and rather anxious. It takes me a while to get use to a new doctor and get comfortable. Dr. L also is sort of the one that calls the shots as far as my treatments and such goes. He is also the one that runs the bigger, more in-depth, and as you can probably guess scarier tests at this point. Granted most of the time they come back as we expect them to and there are fewer surprises at this point than there were a few months ago, but still Rheumatology appointments are a bit stressful still. Not to mention there is the whole mess of having my joints squeezed and pressed on, which sometimes is quiet painful and uncomfortable.

A different nurse processed me this time. She seemed new and I hadn’t seen her before on any of my prior visits. While going over my medications she struggled pronouncing the two medications Dr. L prescribed to me AzaTHIOprine (Imuran) and Hydroxychloroquine (Plaquenil). I feel if you are going to be a nurse at a Rheumatologist’s office, you should quickly learn the medications you are going to be encountering. Those two are fairly common and I know Dr. L prescribes them frequently, as he told me they are two that he relies on a lot. Other than that minor detail, I liked her a lot. She was personable, considerate, and listened to what I said. She also made notes of everything I said and not just parts of what I had to say for Dr. L. After she was finished with her part of the appointment she stepped out.

After a short wait Dr. L came in and we went over how the last 3 months had been. He asked if I had gotten my flu shot yet, and I told him yes and provided him with the date. We talked about my last flare, triggers, and what I was doing to keep my symptoms at bay. He was pleased to hear that things were improving and we both agreed that there wasn’t a need to add any new medications or to increase the dosage of either medication. Which with Imuran, we really can’t because of how I tested as a metabolizer of it back before we started me on that medication. I’m pretty much at my high dose already. It was a short appointment and he sent me to the lab for some routine tests to make sure my body was tolerating Imuran properly still.

Before going I asked him about Antiphospholipid Antibodies and their significance. The first time I tested positive for APS I tested positive for Anticardiolipin Antibodies, the second test  I tested negative for Anticardiolipin antibodies but positive for antibodies against Beta 2 Glycoprotein. I wanted to know if that meant my clotting risk was lower, which was what my Hematologist has indicated. Dr. L told me that wasn’t the case, that B2Gl was a subset of Anticardiolipin and both were antibodies against phospholipids which put me at an increased risk for blood clots. I relayed that information to Dr. C, my PCP the next day at my routine INR check.

Thursday I received an email from Dr. L and it was one of the best emails I have received in a while. Not only is my body tolerating Imuran perfectly fine, my kidney function has returned to normal! For the first time in over a year my kidneys are functioning 100% normal! Thank goodness! I can only assume that the combination of Plaquenil and Imuran are doing the trick at keeping my immune system from attacking them or whatever was going on that had my creatinine elevated for several months.

I see Dr. L again in January, a few days after my 31st birthday. I’ll have a new list of questions for him by then I’m sure. For now though I’m just really happy with where things are with my treatment.

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!

 

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.

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.

Resources for People with Lupus & Their Families- Expanded

Over the weekend you may have seen me post this image already. I wanted to take a moment and expand upon this a little. There are many resources for help and support out there for People who have Lupus and their Families.

This Flier points out a few quick excellent ones. Definitely check the Lupus Foundation of America’s website and find your local chapter, they can link you to local specialists, support groups and other resources in your area. They also offer free educational material and services as well as a lot of information to read about Lupus.  You can also call the 1-800 number and talk to a health educator if you have specific questions you can not find answers to.

You will notice Listed is a link for Clinical Trials, through clinical trials and research we get find better treatments and eventually a cure to Lupus. Without volunteers and participants this Research isn’t possible. If you are interested in helping find better treatments and paving the way to a cure please see how you can help today!

Other resources for help that were not mentioned in on this flier are your doctors, especially your Primary Care Physician and your Rheumatologist, they probably know you better than any of your doctors, and they will also be great resources for things like counselors and ideas on physical activities that might fit within your physical abilities. Your Rheumatologist may also know of other Clinical Trials in your area that may not be listed with the LFA. Also the larger hospital in your area may be a good resource for information, support groups, and finding educational information about Lupus.

There are also a ton of online support groups, When I was first diagnosed with Antiphospholipid Syndrome back in November, one of the first things I did was search Facebook for support groups, I was surprised at the amount of groups there were. I joined several of them. Some are better than others. I’ve left a few of them, and have learned which ones are most beneficial. Once it became apparent I was also looking at a diagnosis of Lupus I began joining Lupus support groups on Facebook as well. Fair warning there are A LOT of them. A few tips on Support groups on Facebook, some are open which means everyone on your friends list can see what you post. Some are closed which means they cannot. Some are private which means you will have to be invited to the group. Also pay attention to the rules and regulations. Some are stricter than others.

As you can see there are a lot of resources available. I encourage you to take advantage of the ones you think would be beneficial to you and your family!