Do You Journal?

“Do you write in a journal before bed?”, he said it will all the seriousness needed yesterday. Several answers screamed through my head before I blurted out “I use a CBT app, (it’s called  Moodnotes, if you have iOS/Apple products)on my phone for when I wake up in the middle of the night having a panic attack.” He simply replied, “Maybe you should journal before you go to bed.”

It seems so simple. I did it for years. I think back over the several paper journals I had, over the LiveJournal I kept in my late teens/early twenties. Then one day I just stopped doing the one thing I enjoyed the most. I stopped writing. I’m not sure why, I’m not even sure if there was a real life reason.

‘No one wants to read this. It’s just a bunch of complaining and rambling’ 

It’s not for them. It’s for me. If it helps me sort through the craziness in my head write it. Simple answer back to the self-doubt monster that resides in my head. 

‘They will all think you are insane if you share all of those thoughts’

That’s what the private button is for. I don’t have to let people see all of me. 

‘Who really wants to know about what life is like with a couple of autoimmune conditions, get over it already?’

Uh shush, there are plenty of people who either have similar conditions or who love someone with similar conditions who want to read stories about people living and making the best out of life while they still can. 

Those are just three of the arguments I have been having with myself during my absence from my blog recently. 

It was resolved yesterday at a doctor’s appointment with my PCP to have my INR check, and to talk about my anxiety medication.  I’m at monthly INR checks now, even though my INR keeps dipping low and we aren’t exactly sure why. Could be the shots I’ve had to get in my hips due to bursitis (fun stories there…uhm no), could be the increased dose of Azathioprine. Or the weather, stress, or who really knows.

The other result of this appointment was a change in my anxiety medication. After two years in a love hate relationship with Mirtazapine I am now beginning a slightly different medication call Venlafaxine, more commonly know as Effexor. He also prescribed Ambien for those nights I can’t get my brain to hush and I need to sleep. I’ve been down the Ambien path before, I know the ins and outs, I’m not too worried about that one. Venlafaxine….I’m just along for the ride for the moment, and hoping it is a better fit than Mirtazpine was in the end.

“Do you journal at bedtime?” No. But I’m going to start attempting to write every day again. Not all the posts will be made public but a lot of them will. It may be me remembering things with mist covered eyes, but I seem to remember being able to cope better during the times when I was keeping some form of journal. So in a month when I check back in… I’ll be able to tell him that I’ve started that process again.

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.”



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.

Parts of Me

Life is lived outside the doctor’s offices. Life isn’t just about test results, exams, referrals and prescriptions. I do, I live a life outside the appointments. It’s good, full of fun, great people, and normal people activities. It’s also full of thoughts that I wish I didn’t have to think. It’s full of thought processes I wish I could skip over.

There’s a part of my life that I have fought, that I have tried hard to say that I have accepted. I am Chronically Ill, that isn’t going to change. I have to come to terms with this. I have to stop fighting the thought processes that go along with that. I have talked great lengths with my therapist that I’m on the edge of acceptance but I’m not there yet. I still fight it. I still get scared, because what does acceptance of all this even mean? In part, it means letting go. It means letting go of the healthy me that is no longer. It means saying goodbye to what I thought was the future that was ahead of me. It means accepting that I am not completely in control. It means having to learn to be okay with not being in control.

There’s a funny thing about that, I never thought this would  be an issue. Yet here are coming up on what I consider the year mark of when I started getting sick and I’m still having momentary freak outs over the loss of control that these two illnesses have brought into my life.

There’s also an interesting thing that happens when you get a chronic illness, you have to learn how to have that condition. It is true there is no set way to have Lupus or APS, but I find myself occasionally thinking, I just simply do not know how to be this sick person they seem to require me to be. It was pure torture to start taking so many medications at first. I went from relying on natural remedies and holistic cures, to having a miniature pharmacy in my bedroom. Yes, I am 30 years old and I have a pill-box, with AM and PM slots, and a key fob that I carry my pills around with me. It wasn’t a gradual occurrence, it was abrupt, like slamming into the side of a wall. It hurt my soul about as much as well. Then over the course of a few months I found myself on an anticoagulant for the rest of my life, and then a few months later I was placed on a high risk immunosuppressant. Both of which require frequent lab work because they are risky medications.

So what does acceptance really mean? It’s learning to love me again. It’s learning to trust my body again. It’s learning to trust these new people in my life, my doctors. There is a whole lot of learning going on. I still feel like I’m navigating a foreign land with a really shitty map that I’m having to write as I go along. I’ve met an awesome tour guide along the way, and slowly we’ve added others that have specialties. Trust is building. My footing is becoming firmer. One day I will be able to say I have fully accepted this part of my life. One day Lupus and APS will just be, parts of me.

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

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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”

Where My Demons Hide

This song has special meaning to me. I can’t get it out of my head. Around the time I started hearing it excessively on the radio, was the time my body started failing me. It will forever be a reminder of when my body started showing me signs of having Antiphospholipid Syndrome. and Lupus.

I know my family and friends have probably heard me talk about APS and Lupus under they are tired of it, and unfortunately they do not always hide this fact very well. I admit it, I’m obsessed. I can’t stop thinking about the illnesses. I can’t stop researching, learning, and considering how their existence in my life will impact my future, my husband’s future, my mom’s future, my best friend’s future, everyone’s future. There’s a whole lot that they have already changed and they have only been a part of my life for a few short months.

I’m at Dr. C’s (my PCP’s office) at least once a week for my weekly PT/INR check to see how well my Warfarin is doing at anticoagulating my blood.

(And the blood’s run stale) That line of the song always makes me skip a breath. Because in a lot of ways, due to APS, that’s exactly what my blood does, due to the antibodies, it thickens and it runs slower through my veins, and therefore increases my risk of clotting, it is stale. 

I do consider my illnesses, Demons of sorts, Demons I will live with for the rest of my lives, They have symptoms, I will learn to live with, they also have anxieties they cause, and because of being chronic illnesses, they have made me have to think about a lot of things normal 30-year-old women don’t have to think about, obsessively.