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.

 

Home, My Body, Carrier of My Soul.

There was a time not too long ago I was at home in my body. I was confident, I felt proud of who I was as a person. I did not struggle with processing how others viewed me, nor did I care so much about how they viewed me. Body image was not a problem for me until a couple of years ago, now I can’t stop seeing the flaws, and it really cuts me deep when someone points something out. My soul feels trapped in a prison, rather than at home in this body. It’s like living in a foreign land, trying to learn a foreign language and all of the cultural beliefs, rules, and lifestyles. It is like figuring out a new normal, while having to accept your old life, the one that you loved, is gone forever.

Getting sick was not a choice I made, It was not something I asked for. When I first got sick, I had a friend very rudely asked me “Do you want to be sick?” This happened while I was trying to explain to her my concerns, my thoughts on what was going on and what my doctors suspected was happening. It hurt me deeply, I cried so hard day sitting in the restaurant with her. It ultimately was a turning point in our relationship and I put a lot of distance between us, and things will never be the same. That was the beginning of me questioning every relationship in my life, and how that person viewed me. I began being hypervigilant about what I said to people, and am still on edge about trusting people. (I have always had trust issues this just exacerbated them).

Getting sick also made me start looking at my flaws. First I questioned if I had done something to cause all of this. Then I questioned if it was the fact I was a little overweight. Then I started focusing on the fact that I had a rounder belly than the skinny girls, thighs that were bigger than a skinny girls. My hair wasn’t always perfect. My face is often red because of my butterfly rash. I have other rashes that affect other parts of my body. This ultimately made me wonder how other people saw my obviously broken body. I just felt (and sometimes still do) like I was completely broken by this, but I fight hard to regain the parts of me back that I can.

I have always been socially awkward. In the past I learned to deal with it and the small social anxiety was manageable. These days if my medication isn’t working properly or I am amidst a flare it is pretty intense. I have days where I feel trapped and I will just sit quietly if I don’t have the need to interact, being an introvert does not make this part of my prison any easier to deal with. This has been the single most isolating experience I have ever been through in my life, and it is hard once you feel isolated to remember to reach out to loved ones, and even the people you are paying to help you get through this. I do my best, and I’m getting better at that part. It is also hard to connect with people who haven’t experienced or been around someone with Chronic issues, they tend to look at you like you are talking crazy when you try to explain what your life is like. I’m still not sure how to deal with this part, other than just not talk about that topic much.

My hope is to one day have a soul that feels at home in my body again. I would like to be at home again.

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.

5 Things My Illnesses Have Taught Me

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  1. Appreciate the Small Things

    Those days where it takes all of my energy just to crawl out of bed. Those days when the pain is forefront in my mind and I know it’s going to be hard to get through the day, I try to keep focus and stay positive by tallying all of the positives in my life. Some days it gets down to the bare essentials, and the smallest things I have to be thankful for to keep me going, but it works for me, and it helps me stay centered and moving forward.

  2. Empathy and Deeper Understanding

    Since I was 11, I have suffered from Migraines. I’ve known Chronic Pain from them since I was 15, when they started being a more chronic issue for me. As the years have progressed, and now with the diagnoses of Lupus and APS and the complications I experience with these conditions, I have a deeper understanding of a wide array of ailments that people are faced with. I also Empathize with those that suffer from various chronic conditions. Likewise, when some comes to me with an acute pain, or ailment and tells me how it is impacting their life, I empathize because sometimes the acute pains in life can hurt much worse than the pains you deal with on an ongoing basis and have adjusted to deal with them. I have a whole new appreciation for the pain scale, and people’s own experience with it due to my experiences.

  3. The Power of Laughter

    I have had some pretty serious moments where the moment came that it was either laugh through it or break down and cry. I thoroughly appreciate being surrounded by friends, loved ones, and even a medical team that understands my sense of humor (and me) enough to know that when things get super serious, I need to be able to joke my way through it. A wise man once told me, if you can laugh your way through it, you’ll survive. It got him through 2 battles with Leukemia before the 3rd one took him from us. He laughed his way through it all. He is one of my heroes.

  4. Support Comes in Various Forms

    I have been fortunate with the various forms of support since I got sick. I have loved ones that are by my side and help me cope and fight each day. I have an amazing doctor and healthcare team that do their part to support and keep me going. Sometimes they even go out of their way a little and support me by listening that extra bit of time. My therapist that I see every two weeks has done wonders for that part of my care and support. She has also taught me various tools to help me cope. I have also found amazing support through online support groups specific to my conditions via Facebook, I have made a few wonderful friendships this way, and it has just helped having people going through similar things to talk to on occasion. That has helped me feel not so isolated.

  5. How to Survive

    Sometimes we don’t realize what we can truly endure and survive, until we come out the other side of it a survivor. I look back over the first part of my journey with my illnesses and the things I experience and at times I still break down. In the beginning when I would cry it was because I thought I was not strong enough to get through the things I was facing. Now I realize I was breaking down because I was trying to be strong at the wrong moments, and not allowing myself the chance to process, and heal. There are moments in facing life you have to stay strong, there are moments when you have to break down and let it out. Ultimately though, life shows you how to survive what you are dealt. It is up to you to figure out the rest. 

Venlafaxine Yes, Sleep No.

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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?

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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.”