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!

Daily Gratitudes Week 4

(Image Source: http://improvementlist.blogspot.com/2013/11/be-thankful-and-show-gratitude.html)

I can’t believe another week has gone by already! It has been a busy week and I’ve had a lot of exciting things happen this week. I’m hoping to have time this weekend to make a couple of blog posts about a couple of things that are mentioned in this post. I saw my Rheumatologist on Monday and it was a great appointment. The biggest news from this week is that I started a certification program to become a Reflexologist! I should be finished and able to accept clients by summer. Here’s my week of gratitude posts: 

January 22- January 28, 2015

1-22: Funny movies before heading to Concord. Sharing future plans with people who are excited for me. Making steps towards obtaining a goal. Well meaning people, even if they leave me scratching my head sometimes. Zazzle snuggles. Precision in language. That my good friend became a brand new RN as of this week AND she gets to start her new amazing job earlier than planned! It is amazing when good things happen to those that deserve it.  

1-23: Fuzzy boots and the warmth they provide. Hot coffee on a cold morning. The exchange of ideas in a positive environment. Spotify. Mexican Food. Hot Coffee on a cold rainy evening. Hanging out with my two favorite guys. Laughter. Warm PJs. That bedtime is nearing, because cold rainy days zap my energy and are painful, plus I didn’t sleep all that well last night. 

1-24: Being able to move, even if it were at a slower pace this morning. Tramadol. Moving forward with plans. Sharing news with supportive folks in my life. How fluffy the clouds looked this afternoon, truly beautiful. Catching up with a friend via phone. Moments of personal realizations, chances to learn from them, and the ability to process that information. 

1-25: Milder weather, beautiful afternoons. Relaxing evenings. Early bedtime (though tomorrow is going to be a long day, with an early am Rheumatology appointment) to start the day off. Not feeling as stressed about this appointment as I have the last few appointments with Dr. L. Figuring ways to occupy the brain space has led to less anxiety. I’m glad I’m at a place where this is an option, unlike before when I couldn’t overpower the thoughts. Acknowledgment that this is for the moment a comfortable place to be, even if there are still some rough emotions being dealt with. 

1-26: A positive Rheumatology appointment. Feeling more confidence in my healthcare team and enjoying the freedom that provides. Entertaining comments about looking younger than I am, nurse thought I was 18. Call me amused. That silence often speaks louder than words, and says more than the spoken word ever will.

1-27: Supportive advice. New beginnings, paths, and the chance to learn something new. That today had a later start to it than yesterday. I’m not so sure I can do early mornings every day, this is not news though, I’ve never been a morning person. Good thing I’m around people who are accepting and understanding of this knowledge.Vanilla latte with an extra shot of espresso helped jump-start me today. Earlier bedtime tonight hopefully. 

1-28: Hot coffee. Feta Cheese is amazing with shrimp. I have officially started my Reflexology studies. My instructor is the founder of the school, and the conference call with her was awesome. I was pleasantly surprised at how much information I had retained from when I was first introduced to Reflexology several years ago. Having things to share that do not seem mundane and boring. The ability to say, no I can do that tomorrow. Spending the evening with my hubby. Relaxing evenings cuddled on the couch. 

4 weeks into my gratitude posts projects has shown me a way to rethink through things. I have an alarm set on my phone for 8:30pm every day that reminds me to take a few moments to pause and think about the day. For those few moments, even if I’m having a bad day I think about it with only gratitude. As I think back over the day, I slowly start to see that even in the negative, adverse moments in life, there is usually something I can be appreciative of. That is one of the tools I first learned in therapy, reframing thoughts, and learning how to think differently to get around unhealthy thought processes.  (Previous Daily Gratitude Week 3Week 2, Week 1)

What do you have to be thankful for this week?

Days 11-20 of 365

Sorry this post is a few days late! I was busy this week with a couple of appointments and my birthday! The highlights of this week include my 31st birthday, an appointment with my therapist, and a shortage in my Azathioprine which you can read about here. Emotionally it was a mixed bag. The shortage of one of my medications, as you can imagine caused a little bit of stress. Luckily it was short lived and the situation was alleviated quickly. Therapy is an every two week appointment and I have made leaps and bounds in dealing with the emotional processing of being diagnosed with two chronic illnesses, issues with my dad, my miscarriage, and a few other issues I have been shouldering. Oh and I also got a new hair cut, which allowed me to talk to a stylist about my plans to do something fun with my hair in a few months. The plan is to dye my hair purple, the question is shade(s) and how creative we want to get with it. I’m thinking I want to have fun with it, since the timing will be around the time Lupus awareness month is and purple is the awareness color for Lupus.

Here are the pictures from Days 11-20

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You can see my entire 365 Project: 365 Days!

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.

Markers of Time

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According to my TimeHop app, that was my status a year ago. Pardon the few grammatical and spelling errors. October, 11, 2013. That date, I’ll never really forget it really. It’s a day I play over and over in my head frequently. It was a very stressful day. The amount of emotions that I was experiencing, I don’t think I can begin to quantitate.  That day I had started the day by calling the office that has become my office that oversees my eye care to inquire about prices. After speaking with the lady for a few minutes she informed me I was having symptoms that needed to be seen that day, and that it couldn’t wait. She was concerned I had a Detached Retina. While I knew there was something wrong with my eye, I knew that wasn’t the answer. She scheduled me a late afternoon appointment with the man I affectionately refer to as Dr. B. He is a Retinal Specialists. He is said to be one of the best in our area. Honestly, he is the man you want to see if you need a Retinal Specialist.

I remember sitting in the waiting room scared to death. I had never been to an office like this. Prior to all this craziness my vision was perfect. I never needed to get vision tests other than the ones I needed in school. I was a little overwhelmed at the whole process as they ushered me through the process. In one room, into one exam chair to do the vision acuity test, dilating drops, fill out my medical history information. Then back to the waiting room. It was the end of the day almost so there weren’t that many people left. Then in to the room with the retina scanner. After I had fully dilated I was escorted to another room with an exam chair. An older,  tall and lanky doctor strolled in and introduced himself after a short wait. He took a quick look into my eyes, and then informed me that I had a clot in my right eye. Essentially I had a stroke in my right eye, you can read more about this appointment in the post called : It’s like a Stroke In Your Eye and It’s like a Stroke In Your Eye Pt. 2

I remember the crazy emotions that coursed through me as I listened to him talk. Honestly, one of the strongest emotions I felt that day was relief. This was the first answer I had to what was going on with all the bizarre symptoms I had started experiencing after my miscarriage. Because of this appointment with Dr. B, I was able to convince my PCP at the time to start me on Warfarin. Later on due to Dr. B being my doctor I was starting on Plaquenil at his insistence prior to being diagnosed with Lupus. I also contribute finding my Hematologist to him and one of his colleagues. My Hematologist handed me off to my Rheumatologist. My amazing healthcare team is, what is, largely because of Dr. B.  I had no idea how things were going to transpire a year ago. All I knew was this doctor was able to tell me what was wrong, and gave the most likely reason to why it had happened.

At the age of 29, you don’t expect to hear you have a blood clot lodged somewhere. Especially not in your eye, that’s something that is seen much more commonly in older patients. In someone my age, it was more likely to be seen in patients with Lupus and Antiphospholipid Syndrome. Looking back, I’ve come along ways since that post. I’m no longer pleading with people to listen to me and to take me seriously when I tell them something is wrong with me. The people who matter, listen and take me seriously.

At the age of 30, I’m still learning a lot about my conditions, the medications I’m on. My anxiety level is a lot less than it was a year ago. I know part of that is because I have taken the time to educate myself. I have made connections through support groups with others that are going through similar things.

Last year I couldn’t think ahead more than a few days without getting overwhelmed at the thought and crying. Now I’m excited to see where my frame of mind is this time next year, when that status rolls around on the 2-years ago list.

Oh and incase anyone is curious, even with the damned blind-spot in my right eye (that looks sort of like a shark shaped blob when I close my left eye)….my vision is still 20/20 in both eyes!

Appointment Free Week

I can’t remember the last time since October that I’ve been able to say the following words. I did not have a single doctor’s appointment this week. No INR checks, No impromptu drop in appointments with any of my doctors, no lab visits, not even a therapy appointment. There was no checking processes, no waiting rooms, nothing this week. It seemed very odd. Appointments have become so routine that it seemed very odd not having one this week. I did enjoy it though. I know as things settle down I’ll have more weeks that are appointment free. I also know as time goes on I’ll appreciate this freedom more than I did this week.

It’s okay I’ll make up for it later on in the month. Next week I have two appointments, INR check and AL. They are on the same day at a comfortable distance apart that I don’t have to rush between them, yet close enough that I won’t have to figure out a bunch of things to do to occupy the space between.

The following week I will meet my Dermatologist for the first time, and we will discuss these skin biopsies that my Rheumatologist (Dr. L) wants me to have. The week after that I’m scheduled to see my Dr. L and I will also be trying to schedule my monthly follow-up with Dr. C and my INR check, for the day after my appointment with Dr. L. Oh and I’ll be due another appointment with AL then as well. So I’ll pay for this doctor free week then.

Now for what I’ve done with myself during this week of freedom. I’ve gone wild! I’ve eaten all the green stuff. No okay really I didn’t. I wish I could though. I’m seriously missing Spinach this week, and Kale. We were talking about putting a fall garden in last weekend and I realized most of what I would be planting were the high vitamin K veggies. That is problematic since I have to limit my intake of those veggies.

I have felt mostly back to ‘normal’, well as close to normal as I have felt since I got sick last year. I’m convinced I’ll never feel completely normal again but as far as my new normal, I have felt mostly normal this week. So I’m thinking this last flare is over. Bonus!

We visited a couple of parks to get some exercise in and to just be out in nature for a bit. I’m still fighting the having to stay out of the sun, but I’m being smart about it. I’m making sure I put my sunscreen on every 2 hours and I made sure I wore my floppy hat. We also made sure to stick to the shady parts of the park. That helped. I didn’t feel like utter crap afterwards.

I also did a lot of catching up around the house. Yep, being sick, chronically, has gotten me way behind on my chores. I feel really bad about this on occasion. I look at the house and get overwhelmed at times and don’t know where to start to get caught back up. Before you start trying to imagine the state of my house, It’s not THAT bad. I do have two other adults living in my house that have helped it from getting Hoarders bad, or one of the other TV shows bad. But, it’s not up to my standards. So I’ve been picking a project and tackling it when I have the energy and my pain level allows me to and getting it back in shape. A little at a time it will be back to my standards. Plus cleaning helps when I’m feeling extra anxious. It’s much more effective than just sitting and doing nothing.

I’ve also cooked some amazingly delicious meals this week. I have a passion for cooking good food for my loved ones and when I am unable to do so, this is again something that makes me feel really bad. So being back at a point where I can do this majority of the time, makes me feel like I’m contributing again. It’s the small things in life I find the greatest pleasure in.

This afternoon I’m spending time at a local coffee shop. I’m meeting up with my husband in a little while to run a couple of errands and then we will spend the evening together. I started chicken marinating in Pineapple chili sauce prior to living the house for dinner. I’m thinking of firing up the grill when we get home and doing the chicken, grilling some corn, and I’m not sure what else. We are all off for the 4th, so we will spend the day going to our little neighborhood 4th of July Parade, and then doing other stuff throughout the day. It’s Friday night so we will probably grab dinner and coffee out. None of us are big on fireworks so I doubt we will go see them, we will see though. The weekend is in the air, no real set plans so not really sure what we will do, hopefully make the best of it though.

 

Tilt A Whirl Kind Of Day

The answer as to why my INR was low yesterday….. the beginning of a flare. Today I was hit with spells of dizziness that landed me back at Dr. C’s office. Dizziness was one of the things on the list he told me I should return before Friday if I started experiencing. So when I started having dizzy spells this morning around 11 I called and got his last available appointment at 4.

I spent the day between the before the appointment taking it easy. Doug and I watched How To Train Your Dragon, ate lunch and assembled my Medical Bracelet that finally arrived. Stay Tuned for a separate post dedicated to it! I continued to have dizzy spells throughout the afternoon, even after eating, and making sure I had adequate fluids. We thought it might be my blood pressure dipping too low so we checked it at one point and it was 123/77.  Yesterday at my appointment it was 130/86.

Doug and I got to Dr. C’s office and went in after Mellow called as he got off work. I signed in and we sat down to wait for the check in process. A little later I was called up and one of the ladies signed me in. It never fails when this lady checks me in she argues with me over if I have a copay at their office or not. Even though she can clearly see on their copy of my card I have no copay for my PCP. The convo this afternoon went like this

Receptionist: “Do you have a copay today?”

Me: “No.”

Receptionist: “Are you sure?”

Me: “Lady I’m here at least every other week, I’m pretty sure I know what my copays are.”

Receptionist: “Are you here for a physical?”

Me: “No”

Receptionist: “Are you sure?”

Me: “You can see the reason for my visit on your screen.”

Receptionist: “Are you sure you don’t have a copay?”

Me: Blank stare on my face

I’m usually a lot nicer and chattier with the front desk ladies. Dizziness does not make for a friendly version of me though. The lady that usually checks me in was quietly smirking behind this lady at our exchange. At one point she mouthed, ‘I am so sorry.’ Finally she finished her line of questioning and printed off my paperwork for the nurse and let me go sit back down. Which was great, because I was starting to get really dizzy standing there, and I told her that a couple of times. It would not have been good if I had of fallen out in the floor.

A different nurse processed me for this appointment, a nurse I had never worked with. I’m so use to Cindy, Dr. C’s main nurse that it always catches me off guard when a different nurse calls my name. She came to the waiting room says “Nicole” I just sat there assuming she was asking for someone else. After several seconds in a more urgent tone she goes “Nicole Davis!” Oh that’s ME! Doug and I stood up and followed her to the scales. Weight was down a lb from yesterday. Then off to the room we went. No fever, good sign. Pulse was okay, O2 was good. BP was 116/77, even lower than it was earlier in the day. I mentioned to the nurse that Dr. C probably wanted my INR checked and she said she would go ask Cindy. She left said that he was running a little behind and told me to be patient and hang tight. We are good at entertaining ourselves while waiting in the rooms at appointments so it was all good.

We were busy chatting when Doug pointed out that my butterfly rash had returned. My face had felt warm for a little while, I took a look and sure enough there it was across both cheeks and bridge of my nose. A few minutes later we heard Dr. C ask Cindy if they had gotten an INR on me, they told him no and in he came. “What happened?” ……Wait is this a repeat of yesterday? “I missed you so I came back.” I blurted out. Yea I’m an awkward individual. Then I told him about the dizziness and he pointed out the butterfly rash, asked about the level of joint pain which were hurting a good bit. Then he asked if I had increased the amount of time I was spending in the sun over the last few days, activity level, and questions about other known triggers of Lupus flares. He then said Cindy would be in to get an INR and that if it was any lower than it was yesterday we would be doing a Lovenox Bridge while we rebounded to my target range. I was so happy he brought this up because if he hadn’t, I was going to suggest it myself. He said other than that we were looking at doing another round of steroids because it was becoming evident we were dealing with another Lupus flare. Why on earth my INR drops like this when I flare, I have no idea but it’s a definite pattern that we have documented.

He went out to take care of another patient or something while Cindy came in to check my INR. To our surprise it was 2.7. It was up a whole 0.4 points from yesterday! When Dr. C got back to the room he said luckily we didn’t have to do the Lovenox bridge, but we would keep that in mind for future dips like this. He did tell me to go ahead and do the extra day of 17.5mg tonight as planned. Then I go back to my regular doses the rest of the week. It was the end of the day so he sat and talked to me a bit. He gave my medical bracelet his stamp of approval. He also is sending a referral to another Dermatologist that accepts my insurance. Apparently the one my Rheumatologist wants me to see doesn’t take my insurance, even though my insurance says he does, that makes no sense to me. The appointment at least calmed the worry that my INR had fallen even lower than it was yesterday, confirmed that I was flaring again, and allowed us to discuss a few things at a leisurely pace since I was the last patient there for the day. It’s up to me if I want to take Prednisone or if I want to ride this flare out since it’s not as severe as my last one. We will see how I feel tomorrow and I’ll make a decision about the steroids for tomorrow in the morning. They come with their own risks and issues so we try not to use them unless I absolutely need them.

He told me I could either keep my INR check on Friday, move it to monday and he’d be fine with that or I could move it to Tuesday, but he wouldn’t be all that happy with that but it was up to me. I am leaving it on Friday and we will go from there. I left out a bunch of things. I’m tired and my brain isn’t processing properly. I guess after being on a tilt a whirl all day that is to be expected.