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.

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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

(Image credit:http://7-themes.com/data_images/out/64/6990593-purple-flower-macro-30248.jpg)
  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. 

Markers of Time

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According to my TimeHop app, that was my status a year ago. Pardon the few grammatical and spelling errors. October, 11, 2013. That date, I’ll never really forget it really. It’s a day I play over and over in my head frequently. It was a very stressful day. The amount of emotions that I was experiencing, I don’t think I can begin to quantitate.  That day I had started the day by calling the office that has become my office that oversees my eye care to inquire about prices. After speaking with the lady for a few minutes she informed me I was having symptoms that needed to be seen that day, and that it couldn’t wait. She was concerned I had a Detached Retina. While I knew there was something wrong with my eye, I knew that wasn’t the answer. She scheduled me a late afternoon appointment with the man I affectionately refer to as Dr. B. He is a Retinal Specialists. He is said to be one of the best in our area. Honestly, he is the man you want to see if you need a Retinal Specialist.

I remember sitting in the waiting room scared to death. I had never been to an office like this. Prior to all this craziness my vision was perfect. I never needed to get vision tests other than the ones I needed in school. I was a little overwhelmed at the whole process as they ushered me through the process. In one room, into one exam chair to do the vision acuity test, dilating drops, fill out my medical history information. Then back to the waiting room. It was the end of the day almost so there weren’t that many people left. Then in to the room with the retina scanner. After I had fully dilated I was escorted to another room with an exam chair. An older,  tall and lanky doctor strolled in and introduced himself after a short wait. He took a quick look into my eyes, and then informed me that I had a clot in my right eye. Essentially I had a stroke in my right eye, you can read more about this appointment in the post called : It’s like a Stroke In Your Eye and It’s like a Stroke In Your Eye Pt. 2

I remember the crazy emotions that coursed through me as I listened to him talk. Honestly, one of the strongest emotions I felt that day was relief. This was the first answer I had to what was going on with all the bizarre symptoms I had started experiencing after my miscarriage. Because of this appointment with Dr. B, I was able to convince my PCP at the time to start me on Warfarin. Later on due to Dr. B being my doctor I was starting on Plaquenil at his insistence prior to being diagnosed with Lupus. I also contribute finding my Hematologist to him and one of his colleagues. My Hematologist handed me off to my Rheumatologist. My amazing healthcare team is, what is, largely because of Dr. B.  I had no idea how things were going to transpire a year ago. All I knew was this doctor was able to tell me what was wrong, and gave the most likely reason to why it had happened.

At the age of 29, you don’t expect to hear you have a blood clot lodged somewhere. Especially not in your eye, that’s something that is seen much more commonly in older patients. In someone my age, it was more likely to be seen in patients with Lupus and Antiphospholipid Syndrome. Looking back, I’ve come along ways since that post. I’m no longer pleading with people to listen to me and to take me seriously when I tell them something is wrong with me. The people who matter, listen and take me seriously.

At the age of 30, I’m still learning a lot about my conditions, the medications I’m on. My anxiety level is a lot less than it was a year ago. I know part of that is because I have taken the time to educate myself. I have made connections through support groups with others that are going through similar things.

Last year I couldn’t think ahead more than a few days without getting overwhelmed at the thought and crying. Now I’m excited to see where my frame of mind is this time next year, when that status rolls around on the 2-years ago list.

Oh and incase anyone is curious, even with the damned blind-spot in my right eye (that looks sort of like a shark shaped blob when I close my left eye)….my vision is still 20/20 in both eyes!

Time Changes Prespective

It’s amazing how much time can change things. The leaves on the trees are dark green again. A few of them are starting to turn brown at the edges. The grass is darker green this time of year. The birds are busily gathering seeds and eating out of the feeders I have out for them. It’s hot, the kind of heat that makes you sweat just sitting still. It’s August, in North Carolina. This is our hottest part of our summers August and September. A few more weeks and Autumn will be here.

It’s a time of reflection for me, I’m noticing things this time of the year, that I simply didn’t have the mental capacity to do so last year. It’s nice, but at the same time it makes me sad that I missed out on it last go round. It’s not something I’m going to dwell on, but it is part of the grieving process. I’ve been down this last week. Mainly because I’m teetering on yet another flare, and it couldn’t come at a worse time, well I’m sure it could, but seriously the timing for this one is bad. Saturday is our wedding anniversary. We have plans and I don’t want to be the reason they are put off, or that we have to change them. My INR has been low for two readings in a row and I’m due back Friday for another check. So as I sit here and watch the little grey Titmouse ferry seeds from the feeder to a tree branch nearby to eat later, I’m taken back to last year.

It’s hard not to think back to the earlier days of my illness. It’s hard not to get lost in the fear, the unknown, and before I know it, I’m crying again. Before I know it, I’m a raw ball of emotions. That’s one of the things I find a lot of people do not talk about when it comes to Chronic Illnesses, the emotional toll it takes.

I learned a lot this past year. I learned a lot about the health care system, insurance companies, and pharmaceutical companies. Most of all, I learned a lot about myself and my emotions. In the earlier days, it was pure fear. Now I deal with a lot of anxiety and depression that is left over from the initial fears.

I do not deal well with the unknown. Put me in completely uncharted waters, and I freak out pretty bad. If this makes me a bit of a control freak, so be it. I like to have a little control in my life. This whole being diagnosed with two chronic illnesses thing, has left me feeling powerless, helpless, and at times out of control of my own being.

I did not become an adult that knows how to ask for emotional support. So if I call you and just break down crying, or I start blubbering, or talking really fast, that is my attempt at saying, Please I need you right now. Or if you look over, and I’m just crying silently in the car, it’s because I feel safe being with you. I’m much better at being there for people, than being the person that needs someone. This even affects my relationship with my healthcare providers. I often catch myself feeling guilty over needing to see them so often, or having to call them to ask them questions. Or heaven forbid they need to step in for an impromptu appointment, or call one of my other doctors for a consult, my guilt factor goes through the roof then. I’m constantly having to remind myself that it’s their job, and that I need to let them, do their job. I really suck at being this ‘sick’ person.

I never realized it was possible to grieve for yourself, until I started the process of well self-grieving. It’s not like grieving a person that has passed away. It comes and goes. It hits at the most random moments, and sometimes it’s more paralyzing than anything I’ve ever experienced. Some days I’m okay with this new life I have no choice but to live. Other days, like this past week when I’m having the extra doctor appointments due to my INR being too low and being on flare alert, I’m reminded that my life is never going to be normal again. It’s almost like leading two lives at times. There’s still enough of the old me left that at times things are still the same. Then there are weeks like these where I can’t help but face the music. There’s no timeline on how long a person grieves themselves when they become ill. There’s no one telling me how long it will take before the heartbreak of these weeks to wear off. I just have to keep moving through them. So that’s what I do. Because I know now, that these weeks do end. The good weeks do come. Yes, unfortunately there are more bad weeks ahead, but I can’t focus on those. It is my choice what to do with my energy and I choose to focus on the good weeks.

So While I’m sitting, taking a moment to watch the birds busily go about their day around me and remembering, I’m also reminding myself to look forward. Always find a way to look forward.