Letting Myself Have Lupus.

“For after all, the best thing one can do when it is raining is let it rain.”
Henry Wadsworth Longfellow

Acceptance is a funny thing, especially when you are dealt a card in life that you can’t give back. Oh I’ve tried many times to give this back to the doctors. It’s a running joke I make to my PCP on a regular basis. He may not find it as amusing as I do but, it does entertain me from time to time to offer to give back my illness, it would make things simpler if that’s how it works. I’ve asked many times where the return box is because this isn’t working out so well for me.

I simply do not know how to be the sick person they tell me this requires me to be. My therapist says, that  in part is my fighting acceptance. I argue that I take my medications daily, I don’t revolt against the doctors. I have even stopped arguing so much when it comes to doing rounds of prednisone. What else is there to accept?

It still feels weird to say that I have a lifelong illness that affects damn near everything I do, want to do, or could possibly plan to do. It still frustrates me to have to change plans at the last-minute, is that where the final stage of acceptance would benefit me? Would it frustrate me less if I just gave in completely and let this horrible disease call the shots.

You see…I’m a bit of a control freak. I know shocker right? This really showed when everything in my life spiraled out of control and I starting obsessing over the tiniest little details I could control. It still is something I have to keep in check or it gets nerve-wracking. I have some tendencies that could be considered OCD. It is something I monitor and so far they haven’t gotten out of hand or disrupted my life too bad. I am a bit of a germaphobe thanks to this.

I’d like to take a moment and discuss what acceptance of an illness might look like on a ‘normal’ person level. You start feeling run down, you argue that it is just lack of sleep. Your throat starts hurting and your nose starts getting stuffy, man it must be allergies, because you don’t have time to be sick. Then everything starts tasting weird and the panic sets in, you realize that your friend or coworker was sick just the other day, and this is starting to look all too familiar. You fight it for a few more hours at work, and then all of a sudden you can’t go any longer and you go home early. You a few days into your illness by this point, before you have accepted your fate. You still go through feeling frustrated because it disrupts your schedule.

Why would it be different for a Chronic Illness? I would suspect scale wise I’m still right on track. (There isn’t a track)

Now imagine feeling like you are constantly fighting off the flu (accept it). You deal with constant pain in your joints, routine fevers, rashes, nausea (accept it). Doctors appointments so routine they know you on sight, who you are there to see, and can tell if you are there for a routine test or visit, or if its one of your flare visit, simply by the sound of your voice and appearance (accept it?). This is your normal. This is your life. This is what they tell you to expect for the foreseeable future, and unless they find a cure, forever, for life until you die. You will always be sick on some level.(Have you accepted it yet?) Then when you finally figure out how to manage your daily symptoms, and move forward with life, and find your footing, you encounter flares, you know those pesky things where you’re manageable symptoms all spike to off the charts levels and leave you barely able to hold it together long enough to think through what the next step needs to be.(Why haven’t you accepted it yet?) This is going to happen over and over. The hope is to find a treatment plan to minimize the impact, but the experts will tell you that sometimes flares just aren’t avoidable. That it is just something you have to learn to live with. (Wait you are overwhelmed with just the thought of this?)

Letting go of the healthy me, that woman who had a bright and shiny future ahead of me, and altering my plan for the future to allow for this new version of me to exist hasn’t been easy. It has been a lot to take in, a lot to mull over and consider. I’m an over thinker by nature and it usually gets the best of me I know, but I also know I’m usually ahead of the game when it comes to planning and having a backup plan in life.

Who knows when I’ll fully accept that I have Lupus and APS, there is not a time line on this type of things. Over the next little while, I’m going to figure out a new approach to self-care, a flare protocol, what this all really means for me. I’m truly going to work on acceptance. I’m going to work on figuring out what it means to let myself have Lupus.

(Image Credit: http://a1.files.biography.com/image/upload/c_fit,cs_srgb,dpr_1.0,q_80,w_620/MTI5MTU3ODY5NzA5ODU5Mjk0.jpg)

Over the last two years in facing my illness I have faced many challenging moments. The struggles with the daily symptoms alone have been enough to make me want to give up at moments. The side effects to my meds are debilitating from time to times. Then you throw in a flare every few weeks or months and its down right overwhelming.

Yesterday as we were leaving my doctor’s office my best friend asked me a difficult question on our way back to the office “When do you know to take a day off because of this stuff?”. I sat for a few and then eventually was able to breathe long enough to tell him that I hadn’t figured that part out yet. I don’t know when to stop. I don’t know when I’ll be okay with my life pausing long enough to take a day or so off for a flare. My schedule right now is set up that on days I don’t have clients I mainly help out around the office and am here in case we get walk ins. It is a great set up. After my shots, I didn’t see any reason to go home and feel horrible for breaking my word about being there instead of at work. I already felt bad enough about needing to leave for the hour it took for us to run to my appt. Commitments and promises keep me moving forward. Giving someone my word, gives me a reason not to give up. It allows me to know that even when things suck really bad because of Lupus, I can still be a dependable person. It may not always be on my terms because my body gets hijacked from time to time, but I will always follow through with what I have committed to.

During flares it is almost like I go through this emotional drive to prove to myself and those around me that I’m okay, even when I’m not. There is a whole lot of frustration with the extra meds, I loathe being on prednisone, I feel yucky because of the flare, the extra pain distracts me, and the nausea is often enough to where it impacts my ability to eat. I approach each flare with the goal of doing what I feel is best for me. I’m learning quickly that no matter what you decide to do, or when you decide to do it though, there will always be criticism. Sometimes it is meant well. Sometimes it is simply because you didn’t do what the person you thought you should do. Those moments can make me feel like I have had the wind knocked out of me, and it is another instance where I consider giving up in this journey.

Continuing to fight, continuing to slowly put one foot in front of the other, and to deal with the symptoms as they come, and hope each day is better for the other is how I make it to the next morning a lot of the times. Hope gets me through the other times. When I’m all out the other two options, I fully admit I get through those moments I have to find one of my stronger support system members and let them help me. It hasn’t been an easy journey, there have been a lot of bumps and wrong turns along the way….and I have miles to go before I sleep.

In response to The Daily Post’s writing prompt: “Forward Drive.”

Do You Journal?

“Do you write in a journal before bed?”, he said it will all the seriousness needed yesterday. Several answers screamed through my head before I blurted out “I use a CBT app, (it’s called  Moodnotes, if you have iOS/Apple products)on my phone for when I wake up in the middle of the night having a panic attack.” He simply replied, “Maybe you should journal before you go to bed.”

It seems so simple. I did it for years. I think back over the several paper journals I had, over the LiveJournal I kept in my late teens/early twenties. Then one day I just stopped doing the one thing I enjoyed the most. I stopped writing. I’m not sure why, I’m not even sure if there was a real life reason.

‘No one wants to read this. It’s just a bunch of complaining and rambling’ 

It’s not for them. It’s for me. If it helps me sort through the craziness in my head write it. Simple answer back to the self-doubt monster that resides in my head. 

‘They will all think you are insane if you share all of those thoughts’

That’s what the private button is for. I don’t have to let people see all of me. 

‘Who really wants to know about what life is like with a couple of autoimmune conditions, get over it already?’

Uh shush, there are plenty of people who either have similar conditions or who love someone with similar conditions who want to read stories about people living and making the best out of life while they still can. 

Those are just three of the arguments I have been having with myself during my absence from my blog recently. 

It was resolved yesterday at a doctor’s appointment with my PCP to have my INR check, and to talk about my anxiety medication.  I’m at monthly INR checks now, even though my INR keeps dipping low and we aren’t exactly sure why. Could be the shots I’ve had to get in my hips due to bursitis (fun stories there…uhm no), could be the increased dose of Azathioprine. Or the weather, stress, or who really knows.

The other result of this appointment was a change in my anxiety medication. After two years in a love hate relationship with Mirtazapine I am now beginning a slightly different medication call Venlafaxine, more commonly know as Effexor. He also prescribed Ambien for those nights I can’t get my brain to hush and I need to sleep. I’ve been down the Ambien path before, I know the ins and outs, I’m not too worried about that one. Venlafaxine….I’m just along for the ride for the moment, and hoping it is a better fit than Mirtazpine was in the end.

“Do you journal at bedtime?” No. But I’m going to start attempting to write every day again. Not all the posts will be made public but a lot of them will. It may be me remembering things with mist covered eyes, but I seem to remember being able to cope better during the times when I was keeping some form of journal. So in a month when I check back in… I’ll be able to tell him that I’ve started that process again.

Just book it, we will figure it out later

Here we are in March already. Time is flying and I blinked somewhere back in January and lost an entire month. The good news is, I didn’t lose an entire month to Lupus. Nope this time I lost it to normal life! I lost it to my studies of Reflexology, to being productive and just busy.

Things are going reasonably well for me right now. I’m about halfway through my certification program and I should be at a point of accepting clients by June. I’m rather excited about this. I would be lying if I tried to say I didn’t have some anxiety about how my body is going to hold up when I start working again. I will be in a supportive office with other amazing therapists and I know it will be an amazing experience though.

I was first introduced to Reflexology as a teenager by my aunt, who passed away from Autoimmune Hepatitis, so I feel rather passionate about my connection to this modality. In a way it is a way for me to keep her memory alive and honor her. I remember many a conversation with her about various reflex points and how they could benefit me. Especially the ones for migraines and nausea, as I have suffered from migraines since I was 11. As you can imagine my studies are bringing back some wonderful memories.

As far as health wise I had a small flare in my symptoms at the beginning March due to the bipolar weather we have here in North Carolina. The hot the cold, hot the cold weather pattern cause me a lot of pain in my joints and a few days of a continuous migraine. Luckily I was able to skip the round of Prednisone this time and just take a shot of Toradol and Phenergan to knock it down enough to get through. My INR has been amazing stable though, and in range. We’ve spaced my check to every 3 weeks now. That means on average I’m only going in 1-2 times a month now for those checks. It has been amazing, and such a change than every 2 weeks. I’ll enjoy this while it lasts!

Therapy is going well. She keeps reminding me I’m doing extremely well and that I can space my appointments out to 3-4 weeks but I honestly think keeping them at every two weeks is what is keeping me in the space that I am emotionally/mentally. Knowing I have that outlet, and safe space where I can go and get it all out every couple of weeks. So for now I’m going to continue seeing her every two weeks. It’s working, it’s not broken, why try to fix it.

Life is overall good. Busy, and never seems to slow down but good. I still have to take momentary pauses though when my body reminds me to. That’s something I’m not sure I’ll ever get use to. The days where I’m tired for no reason other than it’s just a brain fog, fatigue ridden lupus day. My time out days. I’m learning to use those for constructive things though. For now I use them for studying and catching up on small tasks. I’m not sure how I’ll handle them once I start seeing clients. But as the running joke at the office goes “Just book it, we will figure it out later.”

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!

Nationwide Shortage on Azathioprine!

Life is full of twists and turns and misadventures when you have a chronic illness. Have I mentioned unexpected twists and turns? I’m learning slowly that sometimes even the things you think you can count on, sometimes come with glitches. This is part of life, even for us Lupies.

One of the best pieces of advice I was given early on was to always refill my medications a few days before I truly run out. My pharmacy refills them 6 days before I run out because I have them set to auto-refill. It has turned out to be a feature that has saved me from running out of a couple of my medications because of supply shortages a couple of times. See, I’m on a couple of medications that are considered special order and a lot of people aren’t on them so there are times they do not get ordered until one of us ‘special cases’ refills their medications for the month.  Always refill your medications with about a week to spare. It gives you enough time to figure out anything should problems arise. Like happened to me this week.

This weekend my Pharmacist called and informed me that Azathioprine, my immunosuppressant was on backorder and that she was trying to rush order it from another supplier. She said Saturday that I could come by Monday to pick up my other prescriptions that were ready to pick up and check on the status of that one. So that is what I did. Unfortunately she learned that Azathioprine is backordered at all of the manufacturers with no stated date of release for the next batch. I told her I would be out of this medication Thursday and asked her what I should do, and she told me my two best options was to either ask around at the other pharmacies in the area to see if they had enough in stock to cover me for this month, or to have my doctor change my medication to another medicine.

I thanked her for her advice and then we quickly made a game plan for how to proceed. I knew my best option was to check with the other pharmacies and since we were near two other pharmacies we decided to stop in and check with them on the way home. We stopped at the first and to our delightful surprise they were fully stocked and made it a breeze to move my prescription over to them and within 30 minutes I was covered with for the month with Azathioprine. I wish my stress level had dropped that quickly, but it took a little longer for it to return to normal. I can honestly say that may be the happiest and most thankful I have ever been for Wal-Mart in my entire life! So glad they were able to take care of this and I’ll keep that in mind should I run into any more issues like this in the future, but as soon as I can I’ll move my prescription back to my ‘home’ pharmacy at Target, because I have been so pleased with how attentive they have been, they really do go above and beyond to take care of me there.

 

on ASHP.org the following statement about Azathioprine appears:

Azathioprine Tablets

[09 January 2015]

Products Affected – Description

Azathioprine tablets, Roxane
50 mg tablets, 100 count bottle (NDC 00054-4084-25)
50 mg tablets, 100 count unit-dose (NDC 00054-8084-25)

Azathioprine tablets, Zydus
50 mg tablets, 100 count bottle (NDC 68382-0003-01)
50 mg tablets, 500 count bottle (NDC 68382-0003-05)

Azasan tablets, Salix
75 mg tablets, 100 count bottle (NDC 65649-0231-41)
100 mg tablets, 100 count bottle (NDC 65649-0241-41)

Reason for the Shortage

  • Roxane, Salix, and Zydus cannot provide a reason for the shortage.
  • Prometheus Laboratories states the reason for the shortage was increased demand.

Available Products

Azathioprine tablets, Mylan
50 mg tablets, 100 count bottle (NDC 00378-1005-01)
50 mg tablets, 50 count unit-dose (NDC 51079-0620-06)
Imuran tablets, Prometheus Laboratories
50 mg tablets, 100 count bottle (NDC 65483-0590-10)

Estimated Resupply Dates

  • Roxane has azathioprine tablets on back order and the company cannot estimate a release date. The product will be allocated when it becomes available.
  • Zydus has azathioprine tablets on allocation.
  • Salix has Azasan tablets on back order and the company cannot estimate a release date.

Related Shortages

Updated

January 9, 2015; December 5, 2014; October 3, 2014; August 29, 2014, University of Utah, Drug Information Service. Copyright 2015, Drug Information Service, University of Utah, Salt Lake City, UT.

– See more at: http://www.ashp.org/menu/DrugShortages/CurrentShortages/Bulletin.aspx?id=1123#sthash.i8YVyGIJ.dpuf

 

Incase you ever need to check or find out info on drug shortages here are a couple helpful links:

ASHP Drug Shortages

FDA Drug Shortages

 

I really hope this resolves soon. When I inquired about why this was happening, I was told that the demand on the active ingredient has increased, and they are having a supply end problem. Well obviously! Hopefully they will get this sorted out quickly. Plaquenil/Hydroxychloroquine has also been on backorder for months and I have had several different manufacturers over the last few months since the shortage of that medicine began. At least it has been easier to locate for my Pharmacy! Guess that is the tricky part when you get put on specialized medications, sometimes things get tricky and you have to juggle things a bit to stay medicated properly.

 

 

Markers of Time

IMG_9771

 

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!