Follow-Up with Dr. C

He wore purple for Lupus awareness! Have I mentioned how awesome my doctor is?
Dr. C wore purple for Lupus awareness! Have I mentioned how awesome my PCP is?

 

Shirt we made Dr. C for Lupus Awareness
Shirt we made Dr. C for Lupus Awareness.

It made my day today when my doctor walked in and pointed out he was wearing not one but two purple shirts for Lupus Awareness! One of them being a shirt we made for him! I wish I could have gotten a picture of him in it, but I at least have a picture of the shirt from before we gave it to him. There is a story behind it and hopefully he won’t mind me telling it on here. My friend Penny and I ran into him one day at lunch and were chatting with him when the waiter happened by and asked him what he did for a living. He replied “I’m a Family Physician at HFP”. The waiter looked at him and then asked, “Is that like a doctor?” Dr. C replied “Yes it is exactly like a doctor”. After the waiter returned inside much laughter ensued. It was rather amusing. After I told my husband the story, being the screen-printer he is, it quickly because a shirt slogan and I gave it to Dr. C at my next INR check.

Today was a follow-up appointment with him. This appointment was on the books a month ago and was supposed to be the appointment where we talked about the fact I had started Imuran and caught up on notes from my last Rheumatology appointment. Since I started Imuran ahead of schedule we didn’t have to do that part. For the most part we have already seen the impact it is going to have on my INR and warfarin dose. For me it appears very little impact is occurring. One this I did forget to mention at my appointment and I will make a note to tell Dr. C next time is that this is absolutely the max dose of Imuran I’ll be on because of how my test results came back when Dr. L tested how I metabolize Imuran. That is the one piece of information I forgot to mention today.

I did tell Dr. C that Monday’s appointment overwhelmed me, left me in tears, and that it was like a completely different doctor had walked into my appointment than the Dr. L I had met at my previous appointment. I told him about Dr. L’s sudden change of mind that we really need to track down the antibodies to prove Lupus and that it caught me off guard a good deal. I showed him the information on the Dermatologist that Dr. L wants me to see for the skin biopsies. We talked it over and he is leaving it up to me unless it comes down to Dr. L requiring me to have them done to continue treatment. I showed him the codes that were on my paperwork that I had to give to the checkout lady at Dr. L’s office and he was able to explain what the medical codes meant. I was correct that the first code meant Undifferentiated Connective Tissue Disease and the other two codes were apparently just reminder codes to my insurance company that I am on high risk medications (Imuran & Warfarin). With that being said, he did tell me that both himself, Dr. M and of course myself still all believe this is Lupus. He reminded me that Dr. L is one of the older doctors, so his Dr. M but not all of the older doctors are stuck into the older way of diagnosing Lupus. I told him that I had learned through looking at my medical records from Dr. L that my ssDNA (single strand DNA antibodies) were moderately high when his lab tested me for Lupus a few weeks ago. The problem with this antibody is that I A) didn’t test positive enough for their likings and B) it is not specific to SLE. It CAN show up with Drug induced Lupus,  Rheumatoid Arthritis and Chronic Hepatitis. Today we discussed that we are pretty sure I don’t have Hepatitis (We have had many conversations over liver issues because my aunt died from Autoimmune Hepatitis and I am terrified of liver issues now),  my Rheumatoid Factor does not support a diagnosis of RA. I am on one drug that can sometimes cause drug-induced Lupus. Here’s the thing though, at the time of the test, I had not been on it for very long, certainly not long enough to cause DI-Lupus AND all of my symptoms predate the start of Lisinopril. So we are again pretty sure this is SLE. I also have anticardiolipin antibodies, which is part of my Antiphospholipid Syndrome, the blood clotting disorder. However, this antibody is pretty common in Lupus patients that also have APS. Confused yet? Yep my medical conditions overwhelm me and cause me to research and ask lots of questions.

So where we stand today is much like I said earlier in the week, It’s still Lupus. We are treating it and hopefully things will slowly start to improve as we continue to do so. Speaking of treatments I told him I thought one of the things that upset Dr. L was that I hadn’t been taking Naproxen as he had instructed me to do between appointments. The thing is I’ve had conversations with both Dr. C and my Hematologist, Dr. M and both of them have in the past laid out the risks of taking Naproxen while on Warfarin. So I’ve erred on the side of caution and used the methods that Dr. C and I have figured out worked for me. I have a topical gel that he prescribed that does wonders when my joints start swelling and it has the benefit of being an NSAID that I can apply directly to the afflicted joint and it’s not systemic so I don’t get the interaction with Warfarin that I get when I start taking Naproxen. I also have a pain med that Dr. C prescribed and when the pain gets too bad I take it. The truth is most days I just deal with the pain because I hate taking pain meds. Even when I need them I hate taking them. I’ve spoken of my dad’s drug issues in the past, just knowing what his addictions did to him cause me to question if I should even get near pain meds. I know there is very little risk in me becoming an addict, I don’t have an addictive personality, unless you count my scarf obsession, my yarn collection, or silly things like that. Still they make me nervous so I don’t take them unless I need them. The last time Dr. C called in a prescription for Tramadol he gave me two refills, I have yet to use the first refill. I still have most of the first prescription left. Granted we ended up having to do a round of steroids in the midst of all this but even those aren’t a long-term option to fixing my pain. Luckily though Dr. C is understanding where I come from with my issues with pain meds. I explained to him the deal with Naproxen and that Dr. L wants me to start taking it at the rate of 1-2 in the mornings and 1-2 in the evenings and that he seemed upset that I hadn’t adhered to this treatment plan. I told him that Dr. L had also said that he has plenty of patients on both meds that have no problems. We both agreed that he probably does, but perhaps none of them have Dr. M telling them not to take Nsaids. I do have a follow-up with Dr. M coming up at the beginning of June so I will also talk to him about all of this then as well.

INR SheetWe also checked my INR at this appointment. It has been 10 days since my last INR check. We had been doing it every week but recently Dr. C said we could start spacing them every 1-2 weeks. I’m not comfortable enough yet to go the full two weeks so I’m splitting it up and going every 10 days for now. I also want to Dr. M about this before I go making too many changes to the frequency of my INR checks. I figure if I’m going to have a Hematologist I should ask him these sort of questions. Today my INR was 2.9. My goal range is 3-3.5(ish). We don’t tend to freak out if it’s a little over. We decided to leave my dose the same because I’m pretty sure the dip is due to this stress induced flare I have brought upon myself this week. Word of caution, stress is not good for folks with autoimmune conditions. It tends to cause a flare in their symptoms. For me it has caused a flare in my joint pain and fatigue and a small dip in my INR. The really cool thing about this dip in my INR, was even though it was lower than we want it to be it didn’t dip me into the range that causes me to have major issues with my APS. Until recently my INR was still in a range where if it dipped it was dipping low enough I would have transient clotting events, dizziness, migraines. This time, it was comforting to see that even with this flare the dip took me just below my target range, and that was still high in the therapeutic range which means clots are of very low risk! Next week I have therapy with AL on Tuesday, then my next INR check and the labs Dr. L is having Dr. C run for him are on 6/2, Dr. M is 6/9.

Overall it was a good appointment. He was able to reassure me and remind me that I still have some control in this insane situation. Plus he wore Purple! Yes he is that awesome! He has another patient that has Lupus and it is sweet that he is showing support for us. Not many doctors would have gone this extra step. It was a small act that says I care! That goes a long way and I hope he realizes how much that means to me.

 

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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.

 

 

 

 

Lupus symptoms vary from person to person by some of the symptoms are more common than others. Here is are some of the more common symptoms. For more information click on the Picture.

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!