What’s True In Our Minds Is True

I was in a fever induced sleep on the couch Monday evening when I was awakened by my roommate, Doug, announcing that one of his news apps had just released a breaking news bulletin that Robin William had been found dead at his residence. I groggily croaked some semblance of grief and sorrow and fell back into a troubled sleep. A few minutes later I was awakened again by Doug’s chilling words that it was an apparent suicide. I was speechless. Which given the fact that I had no voice (I still don’t have much of one thanks to this round of crud I have fallen victim to), I guess it’s best. I stared at the ceiling for a while thinking back over all the movies and shows. I thought about the laughs this man has brought me, the happiness. I thought about the tears, the sadness, and the other emotions this man who I have never had the chance to meet has been able to evoke from me. The more I thought about it, the sadder I became. My heart breaks for him, for his family, friends, and for everyone his life touched. Most of all, it breaks because in that instant that he made up his mind, he lost his last thread of hope for tomorrow.

As time passed more details were released about his struggles with depression and his addictions. Also as time passed it appears two camps formed. Those that understand and/or are supportive to the people who face such struggles and those who are using this as a platform to say negative and rude things. I will say that my own thoughts on suicide and how depression is faced recently changed due to my own personal dealings in life. First I lost a loved one who didn’t see any way out but to end their own life. Then more recently I have faced the deep darkness that depression, anxiety, PTSD, and the likes places on a person. Both of those have greatly changed my thoughts on how depression ‘is’ and how one could possibly get to the point where suicide seems like the only way out.

Prior to the two events I spoke of above, I like many people who have never faced such things, could not grasp how one could get to a point where suicide was the solution. Then after the one two punch of these two events, I realized it’s not a solution. See, depression and anxiety disorders lie to you. They break you down to a point where your reality is warped to the point that what you are seeing is so skewed that you can no longer see past the negativity. You can’t see that things will get better. It’s a scary place to be when all you are holding onto is one thread of hope. It’s hard to hold on to that last thread of hope when your whole world is growing dimmer with each skewed thought. I know this, because I was there a few months ago. Everyone around me was telling me to just to keep moving forward, to keep going. That things would get better. What I was hearing was, that I was failing and I needed to do something different. So I’d get up the next day, try a different approach, that wouldn’t make me feel better, so I’d still feel bad, and hear my loved ones saying the same words, but my skewed reality was translating it differently. See. Depression, and anxiety, they  LIE. They do so, so well though that their lies become our new truth. That new truth becomes our new reality. It’s vicious, and it happens seamlessly and without realization you begin believing things that weren’t true before, but all of a sudden they are.

There came this moment several months ago where I really scared myself. I held a bottle of medication in my shaking hands and I studied them for a good long while. I knew I held in my hands the perfect way to end it. To end the hurt. To end the fear. I was tired. So tired of being afraid all day long. So tired of crying. So tired of the panic attacks. In my skewed reality I didn’t see an end to the depression, nor the anxiety and fear. I was tired of living like that. All of a sudden it made sense and that’s what scared me. Suicide was not an answer as in it fixed the problem, it ended it. Much like when you get tired of someone bothering you online you block them. This was the ultimate blocking of yourself. With a deep breath I sat the bottle back down, tears streaming down my cheeks I realized I wasn’t ready to block myself. That’s the closest I have ever come to considering it though. What really stopped me was knowing how hurt my loved ones would have been. I couldn’t put them through that.

For them I can hold on to the tiniest thread.

For them, I’ll fight for tomorrow, always.

I’ve since thrown that medication away since I’m no longer on it. I started therapy once I was in a place to actually start dealing with the emotional side of all this and that has been the biggest help at regaining my hope.

So when I say my heart breaks for Robin Williams and his family, it’s because I’ve been there. I know what depression can do to a person. Each person’s battle is individual so I can’t say I’ve been exactly where Mr. Williams was that instant he decided he was ready to end it all, but I’ve been in a similar place. I also can say I’ve been in a similar place that many of his loved ones sit right now, after losing my own loved one due to suicide. My only hopes are that he has found the peace that he could not have here on earth and that his family finds peace and closure during this difficult time. It’s not easy being a survivor of a family member of a person that commits suicide.

I want to end with a quote from one of my favorite Robin Williams movie What Dreams May Come. It is all too appropriate. Even with the skewed realities due to depression and anxiety, that is what our truth is based upon.

“What’s true in our minds is true, whether some people know it or not.”

 

 

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.

 

 

This time Last Year

This time last year I was in a completely different place. I had just started having the major symptoms that would later to lead to my diagnosis of Antiphospholipid Syndrome and Lupus. To say I was scared, is a vast understatement.

I can pinpoint the day that a lot of this started. You can read about it on my post The Day Life Changed. To summarize what was going on I was having severe dizzy spells, double vision spells, and had started seeing this bright zipping light dart through my vision field. Shortly after this I began having episodes of what later would be diagnosed as transient clots in my eyes. This wouldn’t be for a couple of months though when they clot in my right eye was diagnosed by Dr. B. Around this time I started having severe panic attacks and one of them landed me in the ER. I had developed Splinter Hemorrhages at this time as well, under all of my fingernails. The ER doctor that night dismissed these, and stated that I had PTSD from my miscarriage. He referred me to a PCP and sent me on my way after giving me a Hefty dose of Ativan and a prescription of Xanax.. This PCP also dismissed the splinter hemorrhages so I sought out my childhood PCP and it was he who, essentially saved my life this past year for the second time since I have known him. He took one look at them and knew we were looking at a clotting disorder. I owe Dr. D A Lifetime of Gratitude.

A lot has changed since this time last year. I returned to the care  of Dr. D’s for a few months,  now I’m no longer a patient of Dr. D’s. See he was 1.5 hours away, which was problematic due to the frequent visits, but more so my insurance that I finally got said I could no longer see him as a PCP. That is how I ended up with Dr. C as a doctor. I’m also pretty thankful for all he has done for me as well. I feel safer, more confident and he helped me build a wonderful team of specialists. That’s just the doctors. I was also diagnosed with APS and Lupus.

I feel a lot closer to my old self. The fatigue, debilitating joint pain, severe dizziness, and constant flu-like feeling I felt last Autumn-first part of Summer has started lifting. I can’t say I feel 100% but I was able to report to Dr. L at my last appointment that I think the Plaquenil and Imuran are working despite the flare I had in June. I just think we need to give Imuran a few more months to reach full impact. Life will still be full of doctor visits, medications, flares, and symptoms, but I think we are heading toward a more sense of normalcy. The simplest day-to-day tasks and being able to complete for my family, brings me so much pleasure.

I feel rather accomplished when I can look back and say, I’ve managed to cook dinner the majority of the week for my household. The small things add up to big accomplishments,  my grandpa always told me this when I was younger and it’s something I’ve always believed and carried through my adulthood.

Mentally/Emotionally, I’m in a better place. I still have panic attacks over having to return to the ER or hospital. Truth is they were not beneficial to me in the beginning. Even the night I presented with classic TIA symptoms, they sent me home with an Unspecified headache. It was later that week I was diagnosed with the Branch Retinal Vein Occlusion in my right eye and told I had permanent partial vision loss in that eye. Their fancy test had said I did not have active clots in my system. I guess it wasn’t sensitive enough to pick up microclots.I never want to go back to that hospital again.

Logically, I know should I have to go to the hospital, I have a better shot at adequate treatment now. Between my highly respected specialists, my PCP, and my medical records that are full of notes from everyone, my diagnosis, and how the hospital system that I am more likely to end up at, I know the outcome would likely be better this time around. I also know there is a plan in place should something happen. It doesn’t stop the fear, fear is an automatic response. I’m still trying to train my brain to process the fear better, to shorten the panic attacks, and to utilize CBT more effectively when they hit.

Therapy has done wonders. At my last session we talked about my fears that were based one what happened last year. We started getting to the root of them. Some of the fears are based on the unknown, and uncertainty, and a lot of that has been answered now, I remind myself of that now, and slowly I will release myself of those fears. The fear of the ERs, that will take time to work through. I think that fear deserve a post all of its own.

I feel confident that I’m headed in the right direction. I couldn’t even form words to express my fears this time last year. All I could do is cry. I really thought I was in the process of telling my loved ones goodbye, and that is a fear that will take me a long time to overcome. I’ll get there. I’ve learned a lot about myself through this process already, and I look forward to the lessons I still have to learn. I also look forward to see where I am at in this process in 6 months, and a year from now.

On The Road To A Happier Place

I see a therapist. I call her AL. I started seeing her at the end of April. Chronic Illnesses or at least for me, awoke a lot of fears and anxieties that I didn’t realize I had. Or maybe I did and they just became overwhelming as I became sick, became sick. Damn-it that still seems so weird to me. Became sick, I don’t get to get better though. I am a Chronically Ill person. That has led to an insanely intense fear of becoming a burden to my loved ones. Now that I have a couple of chronic illnesses that have unpredictable courses, this fear overwhelms me at times.

First of all, Antiphospholipid Syndrome, is an autoimmune blood clotting disorder, puts me at a higher risk for strokes, heart attacks, DVTs, PEs, and other clotting events. I have already had several transient clotting events, as well as a clot that lodged in one of my Retinal Veins and led to a small area of blindness in my right eye. This has left me fearful of any change to my vision, as I can never be sure if it’s the start of another clotting event, a side effect of a medication, or even migraine related at first. This has been a major source of anxiety. I can tell you now, the mere thought of more vision loss, causes an instant panic to run through me. Blindness would definitely cause me to be more dependent upon my loved ones, and thus more of a burden. So far my clotting events have all been micro-clots. It is my hope and the hope of my doctors that we can stop any more events from happening, and especially prevent any large clotting events from happening. I still live in fear of the next one happening though. I’m not sure that fear will ever go away, regardless of the amount of therapy I undergo.

Now let’s talk about this other diagnosis that is out there looming. Lupus, another autoimmune condition, with no predictable course. Even my diagnosis is going on an unpredictable course. I don’t at this time have the positive labs to ‘support’ a ‘definite diagnosis’ of Lupus as my Rheumatologist says. So instead I am being treated for a ‘Lupus-like Illness’ because my symptoms are ‘highly suggestive of a ‘Lupus-like illness’ (do you think perhaps….because it IS LUPUS????). Another phrase that has been thrown in the mix is Undifferentiated Connective Tissue Disease. Which is sometimes a catch-all used by doctors when they want to say ‘hey we get it, something is wrong, but we can’t make a definite diagnosis at this time so we are going to label you with UCTD and treat you for Lupus without calling it that at this time’. I know my family history, I know my symptoms. I know what I’ve read, and what the Lupus Foundation of America’s website and many other resources have said. This is Lupus, seronegative at this time, but nonetheless, this is Lupus. It will eventually be supported with Labs, I just have to get sicker first, yep that’s how it seems to me. I’m not sick enough yet. Of course in July I’ll see a Dermatologist so we can see if we can track down the elusive antibodies that way to see if we can at that time ‘definitively diagnose’ this as Lupus. As I told my PCP, the Rheumy can call it what he wants, I know what it is, as long as he continues to treat me, I really do not care, other than being frustrated over how things are playing out. I also know, eventually the labs will be positive, eventually he will get what he needs to definitively diagnose me (unless he retires first), see….. I can wait this out, I know these things take time, I’m doing my best not to go anywhere, despite my fears of the alternative. Lupus or UCTD, whatever you want to call it at the moment, has an unpredictable path. It can attack any organ, at anytime. It can lead to disability at any time, and it can lead to more dependency upon loved ones.

Both of these conditions combined have been caused me a great deal of fear. I know, I know. You shouldn’t stress over what we don’t know about the future. What we know today could all change tomorrow. That’s part of the problem. My entire life changed in a matter of a few weeks. I’ve just recently started getting things back on a track that makes somewhat of sense with how I saw my life panning out. Of course there have been changes implemented to the original plan. I had always seen myself as one that would end up in the caregiver role for my family, to now be in the position of the one that may very well be on the receiving end of that relationship, it has been a bit of shift in how things are viewed. It scares me. I’m not good at being ‘sick’. I never was when it came to acute illnesses, and I’m not sure how I’m suppose to do this long-term.

This past week was a prime example, I had a flare, so on top of feeling physically ill, I mentally/emotionally beat myself up because I felt like an inconvenience/burden. Al and I talked about this at my appointment today. I told her that Friday alone I managed to inconvenience two doctors because of all of this. She stopped me, and reminded me, that it was sort of their job to do these sorts of things. We talked about that aspect of this and I agreed, but still I felt guilty. Then I mentioned how much of a burden I was for my husband and best friend and that I feared it was just going to get worse as time went on, and what if I couldn’t pay them back or show my gratitude enough. We talked through these issues, and by the end of the appointment I had gained better ways of confronting these specific cognitive distortions. Cognitive Behavioral Therapy has been very beneficial so far for me. I can’t say it has fixed everything, it probably never will, but it has given me another tool with how to combat the thoughts I struggle with on an almost daily basis. This alone should help me with my fears, anxieties, and the depression I face while dealing with my illnesses. It’s a work in progress, it will be for some time to come, but I’m on the road to a happier place.

Lost- A sense of losing one’s self

Last week when I posted Lost, a poem I wrote, I had no idea it would quickly become my most popular post. It seemed to resonate with many of my readers. The loss of one’s self seems to be a common occurrence with the chronically ill, especially at the beginning of the diagnosis. I have received many comments, messages, and have been asked by several if they can share my poem on their own blog. I was humbled by this. The words flowed easily as they truly came from the heart. I have struggled for months with this sense of loss. It wasn’t until I began seeing my therapist a couple of weeks ago that I truly knew what to call it. It was at that first appointment with AL that I finally learned what I was experiencing.

Loss of self, and the grief of the healthy me. It seems so simple now. These two phrases explain so well, what I have struggled so hard to explain to my loved ones for weeks, no months. The best I could come up with to explain it to them was to say: It was as if one day I was picked up and sat down in someone else’s life. There literally was this one moment where I went from being completely okay to where I was no longer the healthy woman I thought I was. I had to learn a new language, a new lifestyle, and even my social life has been impacted.

I still catch myself at moments thinking ‘Dear God please wake up, this can’t be me. This just can’t be happening.’ It has been an adjustment. I’m still not there yet. I don’t know when I will be there. I don’t know when I will truly find myself again, but I hope when I do, both parts of me remember one another.

Let’s talk about these differences Lupus and APS have brought into my life: Continue reading “Lost- A sense of losing one’s self”

Emotional Dealing

(Image from: http://weatheringthestormbp.com/wp-content/uploads/2013/04/e3d0f15470243e3f766e7b5a4c1fad1f.jpg)

 

Today was the day I took a step toward a better tomorrow. Today was the day I saw my therapist for the first time. I’ll call her AL. Today I began the process of gaining a better way of coping with everything that is going on. I have the tools, I just need a better way of utilizing them. Somehow during all this craziness I lost my coping abilities. I think it happened about the same time I became so utterly overwhelmed with the medical bullshit that I couldn’t see three feet ahead of me any longer. I gave myself a chance to figure it out on my own. I realized I couldn’t, so I sought out help. Dr. C referred me to the group AL works with. They paired me with her. First impression is that they paired me correctly!  Continue reading “Emotional Dealing”

The Day Life Changed

#work #wemakesigns #vinylgraphics

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I stood in this spot, 9 months ago. I was there with Doug, we were installing vinyl graphics on the window. These vinyl graphics to be exact:

As I stood and watched as he masterfully applied the graphics to the window, I was struck with dizziness, at the time I thought it was low blood sugar. Later I would realize it was the my body alerting me that there was something going wrong. It was a late July day. It was hot, humid and it was not even noon yet. I remember telling Doug and the lady we were doing the graphics for that I needed to sit down. After a few minutes the dizziness passed and I felt better. We finished what we were there to do and then went and ate lunch. We came home and Doug got ready to go to the place he works for massage. After he left one of our friends called and asked if I wanted to take a day trip the next day to my hometown to show her and her kids around and to see my family. I told her I’d love to. I didn’t mention anything that had happened because at the time I thought it was an acute issue. I phoned my mom after that and told her of our plans to visit. While I was on the phone with her I was hit with a double vision spell, this was the first of what has turned out to be many of these spells. Looking back I wish I would’ve gone to the doctor then. Though honestly I am not sure it would’ve made a difference, I went a few weeks later, with the same symptoms, and it still got me to the same diagnoses of Antiphospholipid Syndrome and later Lupus.

July 23, 2013, that is forever the day my life changed. Since that day I have felt like I was picked up and sat down into some random person’s life. It is almost like being dropped into a foreign land and expected to survive. I’ve had to learn a new language, medication names, medical terms, abbreviations. (R means Thursday folks! I learned that this week). 9 months, granted this journey started with my miscarriage, but I didn’t realize it, but I know thinking back I was aware 9 months ago something was wrong. 9 months I’ve known something was wrong. I often catch myself thinking, this is not me, this isn’t happening. I know it is, I know it is real, but there are moments, I really wish I would wake up and things would be back to the old normal, that life would be simple again. I will endure and I will get through the tough parts of this. I can remember early on my old PCP asking me if I was depressed, I think at that time I was still too scared to be depressed, and now I’m honestly not sure if I know the answer to that question or not. If I read the clinical symptoms of depression, then yes I am depressed, but it’s much more than that isn’t it? I’m still waiting on the Therapists to call me that my PCP has referred me to. I look forward to talking to them. One of my personal goals is to be able to come off of Mirtazapine at some point, which I am actually on for anxiety and insomnia but it is an antidepressant. I haven’t set a time frame for this, nor have I even mentioned it to my doctor. For now it is beneficial, it helps me sleep at night, it keeps the majority of the anxiety at bay, and it doesn’t leave me feeling like an emotionless zombie. Though I admit there are days I wish that were the case.

I’m going to end this because as I expected this has rendered me in tears. I still can’t talk about the first part of my journey without crying. It’s all part of processing it. If you are still reading thank you for letting me share my story with you.

 

I leave you with a peaceful picture and the namesake of my hometown. This is one of the places I took my friend and her two boys. I really thought that day may be the last time I would see this place. It was so beautiful. I’ve been back by a handful of times these last few months and each time I go I snap a new picture.:

Moravian Falls #falls #northcarolina #whereigrewup #waterfalls

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