Little Victories

"Success is made of little victories."  What's your little victory today?: Helpful Quotes
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Today provided cause for celebration. Today for the first time since the end of October my INR is back in range!!!! It was a solid 3.3! Today Dr. C said “See you back in a MONTH”! Today I sighed the largest sigh of relief I have sighed in a long time, simply because of a test result. This may also mean we have figured out the new dose of warfarin I will be on thanks to the manufacturer changes and hopefully when we recheck it in a month that will prove us right.

While at his office he also repeated the freezing of my wart that is hanging out on my right thumb. First time he froze it he used the canister of Liquid Nitrogen. This time it was old-school style with LN in a Styrofoam cup and a Q Tip applicator.  I don’t recall my skin sizzling during the first freezing. Was rather fascinating, or at least it was to me, but I’m a bit of an oddball when it comes to medical procedures. I do work on the fringe of the alternative medical field and therapeutic realm so I guess it isn’t all that weird. After the area around the wart heals from the LN treatment for a couple days I will continue with the adjunct Duct Tape Treatment that Dr C had recommended after the first freezing.

Talked to him about my last appointment with my Rheumy, the angry email that resulted due to the dreaded ‘roid’ rage that I sent my Rheumy and the fact that even though today is the last day of my Prednisone taper, I am not fully over the flare symptoms. So he recommended that that I email or call Dr. L and ask his opinion on extending my Prednisone or just relying on my at home treatments for my symptoms. I emailed, I’m still waiting on a response from Dr. L.

At least we had a small victory today, I rejoice in the small things and celebrate those every chance I get.

-N

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.

 

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.

Venlafaxine Yes, Sleep No.

(image credit:http://orig02.deviantart.net/ff8d/f/2013/055/2/5/insomnia_by_nightwolf7272-d5w2i1p.png)

I am coming up on the 3 week mark of making the switch from Mirtazapine and Venlafaxine. The first couple of weeks were definitely odd, and I’m sort of wondering if the transition from one medicine to the other is what shocked my system enough to trigger this current flare I am in. It wasn’t something that I considered would happen when I made the transition but I suppose going forward I should be more aware that changes like that may trigger a flare.

The good points about this medicine is that I’m definitely noticing myself being calmer during situations that would normally send me into a panic. It’s not 100% yet but it has definitely made a positive impact on my anxiety. Even at nighttime when I would normally have my nocturnal panic attacks, now I just lay awake with my mind racing through the problems that it is trying to solve, without the ensuing panic attack that usually follows those times. It has been nice to experience this lessening of anxiety. I may request the next higher dose at my next visit as I think it will be more beneficial. With that said, I’m also wondering if I had gotten to the point where Mirtazapine was causing me anxiety vs treating it because I literally felt a change almost immediately after I stopped taking that medication. It was enough I plan on mentioning it when Dr. C and I have a chance to sit down and talk about this part of my care again.

Sleep Still eludes me, I have many nights where either I snap awake between 2-4 to solve the world’s problems, yep my brain thinks it is a superhero! So I spend the next couple hours trying to convince it that there is nothing we can do to solve the problems it is thinking through during the wee hours of the morning. Now that the panic is less, it is really like a silly argument going on in my head. Seriously if they weren’t so damned annoying they would be rather comical. I’m following Dr. C’s advice and only taking Ambien every 3rd night of sleeplessness. It has been a cycle of horrible sleep and patchy sleep even on the nights I take it. There has to be a better solution to my sleep issues. The night after I got my Phenergan and Toradol shots this week I slept amazingly well. Best sleep I have had in a long time. Too bad I can’t just take Phenergan for sleep! I fell asleep curled up in my favorite blue chair and woke up long enough to drag myself to bed and promptly fell back asleep. It was amazing. I know part of my sleep issues are pain and nausea related, especially during flares like this one.

Someday I will have peace, sleep, and happiness, and be relatively pain-free. Hey, I can atleast hope right?

(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.”

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.

 

 

Triumphant Wings Walk to End Lupus Team

I have exciting news guys! I am made the first step to meeting one of my goals for 2015 this weekend! I signed up for a team spot for the Charlotte Walk to End Lupus Now! By going to the link you can join the team and either walk with us, or you can join as a virtual walker and help us with fundraising and the money you raise will count toward our team total!

For my longtime followers you know how personal this Walk and fundraiser is to me. Lupus affects me personally as well as many of my family members. I will walk proudly on May 16th.

Please Support Walk to End Lupus Now! Each year, thousands of people across the country join forces with the Lupus Foundation of America and walk with one unified purpose – to end lupus. Your generous gift goes towards solving the cruel mystery of lupus while supporting groundbreaking research and providing caring support to those who suffer from its brutal impact.

 

You can make a donation easily by clicking the “Give Now” button by going to the following link – See more at: Nicole Davis’s Support Page. All donations made on the following page contribute to not only my personal goal, but to our team goal! All funds raised through the following link go directly to the Lupus Foundation.

 

Or you can donate to the team here team, Triumphant Wings. If you go to the team page, be sure to chose one of our team members to donate to so our team gets credit for your donation! Our team members by name are Nicole Davis (me), C Davis, Douglas Dillman, Zakia Ruffin and Erricka Faw. If you view my blog on the site, you will also notice a donation link on the top right hand side. That is another easy way to donate to the Lupus Foundation.

 

Current Team Goals

  • Team Members: 5 out of 10 – 50% there!
  • funds $35 out of $1,000- 4%

I will leave you with a short video on Lupus.

2014 The Year in Review

Wow guys, It’s hard to believe that we are sitting here and it is the last day of the year! I have been doing a lot of looking back this past week over the last year and I am simply amazed at the last 365 days of my life. I know it would be insane to try to do a complete capture of it in one post but I figured it would be fun to do a post where I try to highlight a few moments. Thanks you to all of my readers and subscribers for being along for the ride this year! I look forward to another year of blogging and telling my story next month. Living with chronic illnesses is always unpredictable and I don’t always post as regularly as I want to. Sometimes this is because I’m feeling unwell, other times it is simply because I’m feeling amazing and taking that opportunity to enjoy life while I can. One of my resolutions for 2015 is to try to post a little more frequently though and to stay a little more connected with my readers. Feel free to poke at me if I go missing for too long guys! 

2014 In Review It’s a little long, but It’s a list of a whole year!!!!

January (Prior to starting Triumphant Wings)

  • Began Plaquenil/Hydroxychloroquine.
  • Found current Hematologist, Dr. M.
  • Antiphospholipid Syndrome Diagnosis was confirmed.
  • Switched PCP’s and became a patient of Dr. C’s. Honestly one of the best decisions I ever made with my healthcare. They take such good care of me at their office.
  • INR was raised to 2.5-3.5 by Dr. C & Dr. M.
  • Look back at old posts on FB and such I was still pretty emotional over my APS diagnosis. I was still in limbo with part of my diagnosis, and looking for answers and still in a pretty bad flare  that I had been in since August 2013.

February

  • Dr. M ruled out adrenal failure and problems with my adrenal glands.
  • It snowed, while pretty and the most snow our area had seen in a few years, this came with the price of worsening pain and swelling in my joints. This led me to finally accepting the fact I needed meds to deal with the pain.
  • I made that appointment with Dr. C that led to pain relief. I told him my issues concerning my dad and pain medications. I cried my eyes out at that appointment, and he understood, and gave me options for relief. A step in the right direction.
  • We were already throwing Lupus around at appointments but the official diagnosis wasn’t in yet.
  • I was starting to appreciate small things again, which was the first sign that my stress level was receding finally. I’ll always remember the first couple of sunrises that seemed beautiful again and not foreboding. It is the small things guys, always appreciate the small things.
  • Had the last Retinal “TIA” that I have experienced on Feb. 7th after my INR fell to 1.8. This is HUGE being prior to switching to Dr. C’s care, raising my INR and such I was having them every few days. I’m now sitting here a week shy of 11 months of being clotting episode free!!!!! (Aside from some tiny micro clots under my fingernails…which I will more than likely always get from time to time due to having APS and Lupus).

March

  • My friend Jenica gifted me a necklace that has a seahorse (real) in a little glass jar. Symbolic to me because I dreamed of seahorses the entire short pregnancy before I miscarried in May 2013.
  • Dr. C decided my INR would be better in the 3-3.5 range. I completely agreed and that is where it has been since. I have felt much better since we have been keeping it in this range. Granted it falls out of this range during flares and for other reasons but if we can keep it in this range as our baseline I feel a lot better. Not every patient with APS benefits from a higher INR range, but I am one patient that does!
  • I had my first Malar (butterfly) Rash that was confirmed by a doctor. Well actually two doctors, and two nurse practitioners, included one that is the PA of my Rheumatologist.
  • I had my first appointment at “The Office on the 6th Floor”  (my Rheumatologist’s office) It was with his PA, she ordered a bunch of tests, and said that she was pretty sure I had Lupus, even if it didn’t show up in my lab work.
  • Started cooking more meals at home again, which means I was starting to feel better. I had been on Plaquenil for about 3 months at this point.
  • End of March came a pretty significant flare, with one of the worst Malar rashes I have experienced thus far.
  • I also started Triumphant Wings on March 31st!!! So a lot of things from this point will be a recap from April through the summer months. I’ll try not to bore you guys too much.

April 

  • SLE/Lupus appeared in my medical history for the first time in print. Significant milestone right? You can read about that appointment in the post Printed Words Echo the Loudest. I also quickly got an explanation of Seronegative vs ANA positive. UCTD and my favorite one that is used when describing me by my Rheumatologist so far is ‘not yet diagnostive Lupus’. Basically I have Lupus but my ANA is still negative at this time. My other labs, well they aren’t positive enough. I still meet enough of the other criteria to be diagnosed with SLE though so that is why I am being treated and diagnosed. Confused yet? yea Lupus is not a textbook disease and sometimes it is a tricky one to pin down. Dr. L is concerned that when my ANA does start returning positive things are going to be really bad, so he wanted to get in front of things. I’m blessed with a team of very smart doctors. Blessed I tell you!
  • I met Dr. L for the first time in April. He also ordered labs to make sure my body metabolized Imuran properly so we could start me on immunosuppressants.This was the second time SLE was added to my diagnosis the same week. You can read about that on the post Office on the 6th floor.
  • A dear friend of mine passed away in April. He was a long time suffer of Chronic Illnesses, and had suffered from a number of complications from birth. He was truly an inspiration and someone who always took time to enjoy life to the fullest.
  • I got a chance to say thank you to the PCP that took care of me when I first got sick in 2013 and had been my PCP when I was a child. I had to leave his care due to insurance changes and miscommunications with his nurse led to my abrupt departure from his care instead of the gradual departure change over to Dr. C’s office that I had discussed with him. Nonetheless the change was finalized by early February and I have been well cared for since.
  • Remember when Dr. C had the student Dr following him (Appt with Dr. C and the Student Dr. and The Expected-Unexpected Reaction to Vaccines), and I got the Pneumonia & Meningitis vaccines? Remember how I had to go back the next day because they spun me into a crazy flare? Yea I laugh about those two visits now but when they actually happened I was pretty scared.
  • I started Imuran/Azathioprine in April, ahead of schedule due to this flare. That also means that the test Dr. L ran returned that I was able to metabolize it, I’m a low metabolizer of it so we have to monitor my dose of it and I’m on my max dose of it, 100mg, that’s it. He is very hesitant to try any higher than that.
  • April 27th I began seeing my Therapist. This was a HUGE milestone for me. It has been an amazing step in my self-care and has done wonder in my emotional state of mine. AL has a lot of experience helping clients deal with chronic illnesses and her office did an exceptional job pairing me with her! I started seeing her weekly and now I see her every 2 weeks. I’m not going to mention every appointment with her, but I want to emphasize the importance of her role on my healthcare team. Without her, I do not think I would have made the strides in acceptance and processing the emotional side of being sick. I am forever indebted to her because of this. It is an ongoing and beneficial relationship and I still see her twice a week.
  • Warmer temps meant pretty flowers, baby birds, and more time spent walking at parks from my posts on Facebook, instagram and such.

May

  • Lupus Awareness Month! It was the first ever awareness month I took part in. So there were a lot of posts that month to my blog, fb, and instagram that dealt with Lupus facts, and my contributions to raising awareness. It was a lot of fun and I plan on taking part in LAM again in 2015.
  • I also hit a point in May where I finally accepted that I had to listen to my body. That I couldn’t just keep pushing through the pain and fatigue. That my body felt that way because it was sending me a message. Since I have started listening to those signals, I recover from flares quicker, I don’t get so sick during flares, and I can generally stave off flares from going full-blown if I start resting and really pay attention to my body.
  • I wrote a Poem called Lost which deals with the loss of one’s self when faced with chronic illness. It remains one of my most popular posts to date and One of my favorite poems that I have written to date.
  • I broke down and bought the first of my wide-brimmed hats to protect me from the sun.
  • Several of my friends, family and even my PCP, as well as myself wore purple on Put on Purple Day this year.
  • I had a follow-up visit with Dr. L, who decided that if we wanted to confirm my SLE diagnosis I should see a Dermatologist and have skin biopsies taken.
  • I started accepting that one of the biggest issues I have with all of this is the sense of loss of control.
  • I remembered with a heavy heart the miscarriage I had the previous year on May 29th. The loss of my child is not something I will ever forget.
  • Saw X-men Days of Future Past in theatre. Awesome Movie. Well if you like those types of movies anyways. Which I do!

June

  • I got my first Medical ID bracelet from Endvr, I now have two! I still need to write a post on them. That is on the list to do early in 2015!
  • I started exploring how to make Lupus and APS just be a part of who I am, instead of defining who I am. I have been accused several times of allowing them to define me. What people fail to realize is how bad things were in the beginning. They weren’t there for the worst of it, they didn’t experience the things I did. They didn’t spend weeks trying to figure out what was wrong with them, then months trying to figure out treatments that were effective.  It’s okay. I forgive those people and their accusations. They also do not understand the process of being diagnosed with a chronic illness and what one goes through when that happens. It’s as individual to a person as the grieving process is. We are respectful of that process and I wish more people were accepting and understand of the process people go through when they first get sick and learn they have a life threatening and life altering disease. Especially two at the same time. It’s damn overwhelming and I think anyone in there right mind would probably check-out for a bit while trying to make sense of it all. I did. I also picked myself back up when I got to a point I could and have begun moving forward. It is a process. It will always be a process. There will be glitches along the way, and I will deal with them as I have to.
  • I saw Dr. M, my Hematologist for the last time in 2014. He cleared me and told me that my care was better off with Dr. L and that unless I had another clotting event or surgery he was just a consultant pretty much. Dr. C has called him a few times with questions but I won’t see him again until June 2015. I owe him a big thank you. He got me to my Rheumatologist who has turned out to be a pretty neat guy. We have differences in opinions and ways of doing things but all in all Dr. L is the kind of doctor I need in charge of my autoimmune issues. (He’s  got immunities!) My best friend recently made me watch that movie for the first time…. Bonus points if you can tell me the name of it?!?
  • I started working with Cognitive Behavioral Therapy and learning my Distorted Cognitions and how to utilize CBT to squash my Anxiety. This has been one of the best approaches to getting my anxiety in check. There are still a few problem areas but CBT has definitely done a world of wonder to getting me to a calmer state of mind.
  • Flare in June, INR fell like a brick, dizziness, Prednisone, extra doctors appointments, Dr. C phoned Dr. M, yea that was a crazy flare. I felt like poop. It was all because I spent extra time under the big fall o fire in the sky. Craziness I tell you, pure craziness.
  • I saw Dr. B, my ophthalmologist for my check up. My Retinal Vein Occlusion was completely healed. While I will always have a blind spot where the clot starved the retina of blood flow, it was good to hear it had healed and didn’t have to be closely monitored. I had the testing done that needed to be done since I am on Plaquenil as well. All was good. I do not see Dr. B again until July 2015. He is another doctor I owe a world of gratitude to. He set me on the path to a proper diagnosis, recommended Dr. M to me, and vetted Dr. L and assured me that I was in good hands. Not to mention he is a top rated Retinal Specialists. Yep I’m that lucky!
  • We saw Transformers in theatre in June!

July

  • Enjoyed my first Appointment free week of the year. We celebrated by living a normal routine, and visiting a lot of parks it seems. We are boring people have I mentioned that?
  • Went to the Color Festival. It was hot, there were colors everywhere. It was in the middle of a flippin’ cow pasture. There was NO MEAT at this event.
  • I started baking cupcakes and other baked goods like crazy in July.
  • Saw Dr. W, my Dermatologist for the first time. He’s like a 12-year-old trapped in an adult’s body. Super high energy and excited about everything! Still waiting for a rash worthy of biopsy though.
  • Dr. L had Google Glasses at this appointment. The geeky side in me was so excited. I wanted to put them on! Maybe one appointment I’ll ask!

August

  • Mellow and I celebrated our 5th wedding anniversary. We celebrated with a day trip to the mountains of NC and to a cheese factory that we like to visit.
  • Was sick with Bronchitis for half the month. Recovery for the second half of the month. INR was wonky most of the month. Lots of Appts at Dr. C’s office because of this.
  • Robin Williams’ suicide happened during this time. Being sick and ordered to rest as much as possible in the wake of this event meant I had a lot of time to think back through my Dad’s death all over again and a lot of time to mourn the loss of one of my favorite actors.
  • Saw Guardians of the Galaxy and Into the storm. Guardians of the Galaxy was awesome. Into the Storm was an extremely stressful and intense movie. Much more so than we were prepared for going in.
  • Made a new batch of laundry detergent. (8/25) Last batch lasted 2 years! Woohoo!

September

  • I picked up my crochet hooks and began crocheting again. Another huge milestone. My fingers are working much better again! A lot less swollen and can function properly, with a lot less pain. It makes hobbies such as crocheting much more enjoyable! This is one of the reasons I disappeared toward the end of the year. I was busy crocheting Christmas Presents!
  • I got my Flu Shot for the year! I was one of the first people to get it when it came available at my PCP’s office because I am on immunosuppressive therapy and Plaquenil. It was the first Flu Shot I have gotten since I worked in Early Childhood Education. I am required to get one every year now.

October

  • I hit the 1 year mark of my Branch Retinal Vein Occlusion, Dr. L becoming my doctor, and of starting Warfarin as my anticoagulant. Milestone Jackpot!
  • I saw Dr. L for the last time in 2014. He ran labs. My Kidney Function Tests were completely normal when Dr. L tested them! First time since they started testing abnormal in August 2013. It was such good news to get, I felt I needed to throw a party to celebrate. I did not however, throw a party. I see Dr. L a few days after my 31st birthday in January 2015.
  • Doug brought home apples from New York. We made a lot of things from said apples. Apple cobblers, Apple pie. We even made several quarts of Applesauce.
  • Several crocheting projects were started and completed during the month of October.
  • Several baking projects were also completed and consumed.
  • I dyed my hair a color called Chocolate Cherry. It is a deep burgundy brown color. A wonderful fall/winter color.

November

  • More crocheting and baking projects.
  • Flare. Prednisone. Extra trips to Dr. C’s office.
  • Thanksgiving was a household event this year. Hopefully next year I will be fully back up to speed and able to invite people over like we use to. If not I’m not going to beat myself up over it like I did last year. I’m giving myself space to just be, and to be where I need to be at the given points in time.
  • Mellow’s Birthday, Celebrated with cupcakes, time with friends, and gift giving.
  • I made Dr. C’s office cupcakes to say thank you for all they have done for me this past year the week of thanksgiving. I had an INR appointment so it was convenient. A wise old man (my grandpa) once told me to always take care of those that take care of you, and that little acts of kindness and gratitude go a long ways in this world. So I always try my best to show those that take care of me how much they mean to me. Especially when they go above and beyond time and time again. I didn’t feel that a simple Thank you was enough this year, so they got super special Pumpkin Cupcakes.

December

  • Took time to remember the passing of my dad, he has been gone 3 years now.
  • Crocheted like a mad woman up until the last-minute possible to get gifts finished!
  • Put up a tiny Christmas tree this year because we weren’t sure if Timber (one of our dogs) would eat our other tree and the ornaments.
  • Baked Eggnog Cupcakes for AL’s office to say thank you for all they have done for me. I also gave her a scarf for Christmas.
  • Took Dr. C and Cindy scarves that I had crocheted them to my Dec. follow-appointment on 12/23.
  • Get to cut my Blood pressure medicine in half for the next month to see if we can start considering decreasing the dose officially or stopping it all together. So far my BP is staying really low. Like clinically low at times. I know this because my grandparents bought me a blood pressure monitor for christmas so I’ve been taking my BP periodically throughout the day every day since Christmas.
  • Spent Christmas Day with my family back home. Loved seeing everyone. Then we came back home and got back to the normal  life the next day.

So that’s it. That’s the Snapshot view of 2014. Sorry it was long so I think it is acceptable. I will try my best in the next week or so to post a list of my resolutions, goals, and thoughts for 2015.