Time Changes Everything

Do you know those days when you wake up and there is nothing left, and you are so completely consumed with emptiness that you could drown in your own tears, and there is nothing that could save you? You know, those days where if you don’t change something, and I mean something big, you will suffocate and that will be the end of it. The literal goddamn end of you. I can’t tell you how many of these mornings I had before I finally made the change I needed to make. I can’t even tell you what made me finally do it. What I can tell you is that on the other side of that change things are falling into place. Even though things are tough right now, I’m no longer drowning, I’m not suffocating. The total and complete emptiness that I felt is subsiding.

The hardest thing I have ever faced was going through the end of a relationship prior to ending it. Those gut wrenching emotions of a heartbreak are meant to be felt in private not sitting on the same couch as your spouse. What I recall most vividly is the complete sense of aloneness that I had began feeling shortly after my diagnosis. It echoed louder and louder as the end drew closer. I was so angry by the end of the marriage that all it took was that one last argument and just like that it was over, I had to end it. In the heat of the moment while on a trip to be with family, I chose not to return home in the capacity of the loving wife. The next time I entered our home was to begin the process of moving my belongings to where I was staying. I also packed my cat and her things into my friend’s car and brought her back to my hometown that night.

I stayed a few nights with friends but ultimately I ended up staying with my folks. It is an adjustment and I finally understand the say ‘you can’t ever go back home’. You can return to family, you can return to the location you grew up in, even the house you grew up in, but time’s cruel trick is that it changes everything it touches, the people, the relationships, even the emotions. You can go back, but it will never be what it once was.

I know I made the right decision for both of us, not just myself. Someday, I hope he sees that as well. In the end I couldn’t come home again, time changed everything, both of us, the emotions, the relationship, and there was no way to  go back.

32 Things

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Yesterday was my 32nd Birthday. In honor of it I’m going to give you  32 random facts about myself.

  1. My favorite color changes ever so often. I almost always have two at the same time. Currently Purple and Teal.
  2. Autumn and Spring are my two favorite seasons, with Autumn winning the top spot.
  3. I drink way too much coffee these days. Yep, I may have a Keurig addiction folks.
  4. I make some of the best  pork carnitas you’d ever eat, seriously better than most of the restaurants in our area.
  5. I have trust issues that started before I could begin forming memories.
  6. I know more than I say, and often people think I’m not paying attention because I don’t say a lot or engage in a situation that I feel is wiser to stay out of.
  7. Up until this year I was a Pumpkin everything person. Last fall, my taste buds informed me that pumpkin spice is no longer the preferred fall flavor, or maybe its a phase, we will see this coming fall.
  8. People tend to tell me the most random things, especially strangers who approach me at coffee houses.
  9. I seem to have entered the year of reconnecting with people from my past.
  10. I had to take a step back to realize I wasn’t alone.
  11. I have 4 tattoos and plan on getting several more. All with meanings.
  12. I find the calm before storms, and the calm snow provides to be utterly breathtaking experiences.
  13. I grew up in the country, then moved to the city. Now I want to find something in between.
  14. I carry a knife that matches the knife my Pawpaw carries.
  15. In case you didn’t get it from the fact above, I’m a Pawpaw’s girl, even at the age of 32.
  16. I’m a cat person who wanted a pug and ended up with an amazing 100+ lb Alaskan Malamute and our roommate/best friend’s 100ish lb dog as household members. I’m sure we can fit a couple more cats and a pug in here somewhere.
  17. I had a hedgehog until he died a few weeks ago. He was an old man by hedgehog standards. RIP Max.
  18. I grew up camping and fishing. I miss those days.
  19. I tend to binge watch tv shows on Netflix due to both my schedule and my patience level.
  20. I cuss a lot. I use all the bad words. I’ve actually made someone cringe because of this.
  21. I can start a fire like it’s my job. One for warmth, I’m not a Pyromaniac. Though there was that one time I caused a small forest fire with a flaming marshmallow. Oops.
  22. I love intense dark chocolate. The darker the better.
  23. I listen to a lot of Folk/Indie/Americana music.
  24. Growing up I thought one of my friend’s Dad hated me. Turns out it was a case of tough love.
  25. I attended a girl scout camp that was overrun by frogs, big frogs, tiny frogs. Frogs everywhere!!
  26. I met my husband online…before it was a cool thing to do. We’ve been together for 12years, married for almost 6.5 years.
  27. I’m a Certified Reflexologist, which is an alternative medicine modality  I have been around since I was a child.
  28.  I prefer the mountains to the beach.
  29. I am not a morning person, and morning people that can pop awake and have in depth conversations frustrate and confuse me. (My husband is one of those types).
  30. I didn’t start feeling like an actual adult until I hit my 30s. My 20s were more confusing than my teenage years, I refer to them as my second adolescence often.
  31. I’m bisexual, and find it rather hilarious when folks assume since I married a man that I am no longer attracted to the ladies. I usually just stare at them in silence and blink until they change the subject. Awkward!
  32. When I don’t know something about a topic that comes up, I tend to put it on a list of “things to be researched”. I’m a knowledge sponge and love learning. However, this has been known to annoy others around me. People are strange, me included.

Faithless? No, Just Jaded

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(img credit: http://datatrans.wpengine.com/wp-content/uploads/2013/02/jaded.jpg)

Some time ago, when I was but a young girl, I lost my faith in God, humanity (most of it anyways), and in this world every surviving.  I learned as a little girl big churches are full of deceit, hypocrites, liars, cheaters, people pretending to be something they are not to save face among neighbors. This was not a religion nor community I wanted to be a part of. I stopped attending church as soon as the decision was mine to make. Before you think I need to be saved in this regard, I am not lost, I am solid in my core believes. I have maintained my own Spiritual concepts since then that I based my faith, and moral code in. These are the things that help shape me into the person I want to be.

Some time not too long ago I lost faith in myself. I was shaken to the core by a couple of medical diagnoses, and that triggered a process in which I felt like I lost myself. Actually more like I felt as though the old me died and I was being forced into being this new version of myself that I didn’t ask to be. I lost faith in my ability to adapt, in my ability to survive, in my ability to live under this new circumstance and expectations. Slowly I have been working through these complications. Someday my faith in myself will be as strong as it was before I got sick.

You see while I may not have the typical faith when it comes to religion, and at the moment my faith in myself is a little shaky, I’m not faithless, just a little jaded.

 

 

Post inspired by WP Daily Prompt: Un/Faithful

Little Victories

"Success is made of little victories."  What's your little victory today?: Helpful Quotes
(img via Nomadic Lass http://www.girliestgeek.com)

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.