Endless Cycle…

Several weeks ago a couple things happened. I already mentioned I changed my anti-anxiety medication and my sleep medication. The update to this happening is that anxiety wise, for the most part I am in a much better place than I was while I was on Mirtazapine. Side benefit I have also lost 17.2 lbs since I changed to Venlafaxine and Trazodone. Granted most of the time I don’t have an appetite due Venlafaxine and the fact that I am also on Topiramate and my appetite is suppressed. This loss of 17.2 lbs has given me a total loss of my high weight at the time of getting sick back in May 0f 2013 so far to 35.2lbs. Still a ways to go before I want to check in with my doctor and get his advice on if I still need to lose a little more of if I’ve made it to where we are both happy with my weight. But at least I am finally making progress in the weight loss department. My suspicion that Mirtazapine was causing me to stall turned out to be right.

The second thing that happened shortly after the switch and the weight loss began was the pharmacy I use switched manufacturers of the Warfarin I had been getting. Apparently the old pills they were giving me were sugar pills because suddenly my INR started coming back high. My monthly INR checks were a thing of the past. I started going weekly again while we struggled to get my INR down. Finally we started making progress. Infact if you consider my weekly total dose prior to this happening was 110 mg and now my weekly dose is 92.5mg, you can see we significantly had to decrease my dose of Warfarin to get my INR to start staying in range again.

Meanwhile, I managed to develop bursitis in my shoulder, this is a story for a posting all on it’s own. I also developed a horrible tension headache/migraine which led me to getting a trigger point shot, that turned out to be way more exciting that necessary due to my body just being a barrel of laughs and having to always do something random to keep everyone on their toes (also deserving of it’s own post).

Currently I am battling a lupus flare, enduring another round of prednisone, a flare up of the trochanteric bursitis in my right hip which was doing amazingly well after my Rheumatologist did another injection at my appointment last week, until I did a silly thing. I actually thought I could get off the toilet like a normal person over the weekend after a trip to relieve myself. “No, No! We will have none of that missy!” said my hip. So I’ve been icing it, taking my meds like a good patient, and laughing at myself and the fact that I have managed to afflict myself with a toilet related injury (re-injure?) This type of stuff isn’t suppose to happen until you are much older right? Guess it’s time for safety rails, and grab bars!

Prednisone, ah yes my old friend. The magical drug that helps me get through flare symptoms, usually stops all the pain I’m having in it’s tracks and at the same time has the ability to send my emotional state of being bouncing all over the place. A few days into this taper I managed to become very upset by an email my Rheumy sent me. So I emailed him back. It was long, it included every issue I have ever had with any of our appointments, how things are being handled, and what I thought needed to be done. Once I get started I don’t usually stop when I’m in that frame of mind. After hitting send, I will say I had that instant ‘Oh crap, guess I’ll be finding a new Rheumatologist.’ Luckily we exchanged several emails, and I THINK, maybe this might have gotten us closer to being able to communicate and being on the same page. I follow up with one of their midline providers in Jan, and then see him again in March. I guess we will see between those two appointments how things go.

I get my INR checked Tuesday, and we will see see how high my inr has become during this course of Prednisone and with the extra meds I have had to take to deal with the pain.

Emotionally there is a lot on my plate, we are approaching the anniversary of my dad’s passing, holidays are generally rough all around for a variety of reasons. I’m doing a lot of thinking and processing right now. A lot of this needs dedicated posts to of their own.

Work has been great, and probably the most stress free area of my life. My client list is growing and working with my coworkers continues to be overall a positive experience that makes work enjoyable and not so much like work afterall.

So that’s what I’ve been up to since my last post. My apologies for not being around and posting like I had wanted to, but as you can see, life had some other plans for me. More posts with details soon. This time I promise.

 

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.

This time Last Year

This time last year I was in a completely different place. I had just started having the major symptoms that would later to lead to my diagnosis of Antiphospholipid Syndrome and Lupus. To say I was scared, is a vast understatement.

I can pinpoint the day that a lot of this started. You can read about it on my post The Day Life Changed. To summarize what was going on I was having severe dizzy spells, double vision spells, and had started seeing this bright zipping light dart through my vision field. Shortly after this I began having episodes of what later would be diagnosed as transient clots in my eyes. This wouldn’t be for a couple of months though when they clot in my right eye was diagnosed by Dr. B. Around this time I started having severe panic attacks and one of them landed me in the ER. I had developed Splinter Hemorrhages at this time as well, under all of my fingernails. The ER doctor that night dismissed these, and stated that I had PTSD from my miscarriage. He referred me to a PCP and sent me on my way after giving me a Hefty dose of Ativan and a prescription of Xanax.. This PCP also dismissed the splinter hemorrhages so I sought out my childhood PCP and it was he who, essentially saved my life this past year for the second time since I have known him. He took one look at them and knew we were looking at a clotting disorder. I owe Dr. D A Lifetime of Gratitude.

A lot has changed since this time last year. I returned to the care  of Dr. D’s for a few months,  now I’m no longer a patient of Dr. D’s. See he was 1.5 hours away, which was problematic due to the frequent visits, but more so my insurance that I finally got said I could no longer see him as a PCP. That is how I ended up with Dr. C as a doctor. I’m also pretty thankful for all he has done for me as well. I feel safer, more confident and he helped me build a wonderful team of specialists. That’s just the doctors. I was also diagnosed with APS and Lupus.

I feel a lot closer to my old self. The fatigue, debilitating joint pain, severe dizziness, and constant flu-like feeling I felt last Autumn-first part of Summer has started lifting. I can’t say I feel 100% but I was able to report to Dr. L at my last appointment that I think the Plaquenil and Imuran are working despite the flare I had in June. I just think we need to give Imuran a few more months to reach full impact. Life will still be full of doctor visits, medications, flares, and symptoms, but I think we are heading toward a more sense of normalcy. The simplest day-to-day tasks and being able to complete for my family, brings me so much pleasure.

I feel rather accomplished when I can look back and say, I’ve managed to cook dinner the majority of the week for my household. The small things add up to big accomplishments,  my grandpa always told me this when I was younger and it’s something I’ve always believed and carried through my adulthood.

Mentally/Emotionally, I’m in a better place. I still have panic attacks over having to return to the ER or hospital. Truth is they were not beneficial to me in the beginning. Even the night I presented with classic TIA symptoms, they sent me home with an Unspecified headache. It was later that week I was diagnosed with the Branch Retinal Vein Occlusion in my right eye and told I had permanent partial vision loss in that eye. Their fancy test had said I did not have active clots in my system. I guess it wasn’t sensitive enough to pick up microclots.I never want to go back to that hospital again.

Logically, I know should I have to go to the hospital, I have a better shot at adequate treatment now. Between my highly respected specialists, my PCP, and my medical records that are full of notes from everyone, my diagnosis, and how the hospital system that I am more likely to end up at, I know the outcome would likely be better this time around. I also know there is a plan in place should something happen. It doesn’t stop the fear, fear is an automatic response. I’m still trying to train my brain to process the fear better, to shorten the panic attacks, and to utilize CBT more effectively when they hit.

Therapy has done wonders. At my last session we talked about my fears that were based one what happened last year. We started getting to the root of them. Some of the fears are based on the unknown, and uncertainty, and a lot of that has been answered now, I remind myself of that now, and slowly I will release myself of those fears. The fear of the ERs, that will take time to work through. I think that fear deserve a post all of its own.

I feel confident that I’m headed in the right direction. I couldn’t even form words to express my fears this time last year. All I could do is cry. I really thought I was in the process of telling my loved ones goodbye, and that is a fear that will take me a long time to overcome. I’ll get there. I’ve learned a lot about myself through this process already, and I look forward to the lessons I still have to learn. I also look forward to see where I am at in this process in 6 months, and a year from now.

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!

 

Until Next Year

I met him in January. He stood a towering 6 foot something and had a commanding presence as he entered the small room I sat in. I was a ball of nerves when we first met. He is an older gentleman with a kind face that is often framed with a pair of glasses that are ill fitted. He moves them up and down his nose as he talks and reads from a thick file he has carried into the room. His expressions were stern at first, though as time has gone by they have softened and I’ve seen a couple of smiles cross his face. He remains guarded most of the time, I’m guessing given his profession it is a learned behavior.  I’ll admit when I first met him it was at a point where I wasn’t paying close attention so some details escaped me.Things such as his thinning hair, or the fact that he always wears a white coat.

I can remember when we first met one of the first things he told me was that I had to find a way to calm down. I was still at a stage that I felt that was impossible. That I thought it would never happen.  I’ve seen him 4 times now. Each time he would say I was doing  a little better.

Today was the most recent of our meetings. Today will be the last time this year. Today he said I looked great, the best he’s seen me since we met. He kept repeating that I looked great. That he was really happy with how well I looked. He said that he was happy with where things are, that I am in good hands and that he is pleased with how I’m being cared for. Today I saw a side of him that I had never seen of him, that let me know why he was on my team. It was almost bittersweet hearing I won’t see him until this time next year. Then again, at least that means he isn’t planning on retiring yet. Today I saw my Hematologist, Dr. M. Today he also said that my care was better off with my Rheumatologist because I have a Rheumatologic Disease with a Hematologic Manifestation.Those are  big fancy words for “Lupus with a side of blood clots”. He will mainly be in the background in case of emergencies, consults, should I need surgery and those sorts of things.

Our meeting Today was brief, packed full of information and he vetted the Dermatologist Dr. L wants me to see. He also was happy to hear I was getting a medical alert bracelet. Today before we parted, he told me he was happy to see I had calmed down from when we first met, and that he knew I was going to be okay. It was over quickly and we parted ways. I headed to the check out and scheduled my first appointment for 2015. I won’t see Dr. M until June 8, 2015, assuming nothing major happens that requires me to see him beforehand.

That Other Illness- Antiphospholipid Syndrome

I know I haven’t talked about my other illness a whole lot. I guess it’s about time I start explaining what it is. In addition to Lupus, I have Antiphospholipid Syndrome. APS is an autoimmune disease which can cause frequent clotting in arteries and veins and/or miscarriages. The clotting results from the presence of proteins in the blood called anti-phospholipid autoantibodies (commonly called aPL) formed against the person’s own tissues. These autoantibodies interfere with coagulation, leading to increased clot formation or thrombosis (in which blood flow stops due to a clot). It is a hypercoagulable state and requires lifelong treatment, usually with anticoagulants such as Warfarin or Heparin. Though treatments should be decided upon with your doctors. Only they will know which treatment plan is best for you based upon your presentation of the condition, your own personal situation, and other varying factors. 

Sometimes APS is referred to by other names. I have 5 different doctors and I have heard each one of them call it various things. I’ve even one of them call APS several different things during the same appointment.

  • Hughes Syndrome
  • Anticardiolipin Syndrome
  • Lupus Anticoagulant Syndrome
  • Beta2Glycoprotien Syndrome
  • Sticky Blood
  • APS
  • APLS
  • LA Syndrome

While men can get APS, just like with most autoimmune conditions women are at a much more increased risk for developing APS. It can occur at any age but it is most commonly diagnosed between the ages of 30-40. It is also more commonly seen in people with Systemic Lupus as a secondary condition. However, it can occur outside of this population as a primary condition as well.

There are some major symptoms of APS. Blood clots and as a result heart attacks, strokes, Pulmonary Embolism, DVTs and  Miscarriages, are all common Clinical symptoms of APS. Not everyone that presents with a clotting event has a large blood clot as their presenting event. I did not. My presenting clotting event was a clot in my right eye called a Branch Retinal Vein Occlusion. This is a small clot in one of my retinal veins. It has left me with a small area of blindness in my right eye. I also had a miscarriage that my doctors are pretty certain was caused by a combination of APS and Lupus. This is the reason I am on Warfarin and the reason I have to get my INR checked so often. I will be on anticoagulants for the rest of my life. It may not always be Warfarin. They may eventually approve one of the newer ones for my condition, or they may decide some other anticoagulant is a better fit for my situation. Only time will tell though.

Most of the time APS is diagnosed after a presenting clotting event or after several miscarriages. Patients with the antiphospholipid syndrome can have a variety of antibodies to molecules called phospholipids in their blood. These antibodies include DVRL/RPR (a syphilis test that can be falsely positive in these patients), lupus anticoagulant, prolonged PTT, beta 2 glycoprotein I antibodies and anticardiolipin antibody. To be diagnosed with definite APS a person needs two positive test results spaced at least 12 weeks apart. Antibody levels can fluctuate over time and you may test positive for one type of antibody one time and another type of antibody another time.

For more information on APS please visit these links:

American College of Rheumatology- Antiphospholipid Syndrome

Hughes Foundation for people with antiphospholipid antibodies

Mayo Clinic-Antiphospholipid Syndrome