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.


Venlafaxine Yes, Sleep No.

(image credit:http://orig02.deviantart.net/ff8d/f/2013/055/2/5/insomnia_by_nightwolf7272-d5w2i1p.png)

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?

Walking Through Murky Water

(Photo credit: http://www.whitefaceregion.com/files/images/Spencer_Morrissey/Camp/Fog.jpg)

Sometimes, I feel like I’m walking through murky water when I’m dealing with my anxiety. I spend a lot of time trying to figure out what is really happening, and what my brain is trying to tell me (negative cognitions/perceptions/interpretations). Too often when you deal with depression and anxiety you are faced with a reality that is misguided by your own mind, because it lies to you and tries to make you believe things that aren’t fact based. It can be a daily battle to learn how to recognize the negative thought process and how to retrain your brain to rethink. I utilize Cognitive Behavioral Therapy often to deal with my anxiety and panic attacks as well as my negative thoughts. It helps to clear the murky waters a good bit.

Though this week it has been extra murky, I mentioned in my last post that I had begun the process of switching from Mirtazapine to Venlafaxine. I’m on my 5th day of the new med and the same of skipped doses of the old med. As you might imagine this has been an interesting last few days. There hasn’t really been a change in my anxiety or panic attacks, it’s about the same, still there. I’m thankful it hasn’t increased with the change of medication. I have developed a few side effects or maybe they are discontinuation effects of Mirtazapine, I’m not sure which. I’m pretty sure these are side effects of Venlafaxine: Coffee tastes almost metallic right now, nowhere near as bad as what I went through when I first started Topamax a couple of years ago. For the first 3 days I felt like I had electricity prickling just under my skin. I yawn like crazy for the first 2 hours after I take a dose of Venlafaxine. That has proven to be rather annoying. The worst thing is the nausea, hopefully that will eventually subside. I have also noticed a definite decrease in my appetite and the amount I can eat at meals. I’m not sure if the increased sleep issues are because of the discontinuation of Mirtazapine, or the mid afternoon dose of Venlafaxine. I’m also experiencing muscle jerks that are rather annoying at night when I try to sleep. It makes sleeping rather frustrating.

I’m hopeful as things level out and I’m on the new med for a while it will prove to be worth it and the side effects will ease off. Hopefully eventually the murkiness will clear and I’ll find some inner peace. Hope.

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.

A year of Emotional dealing.

A year ago I started seeing a therapist. A year ago a began the amazing journey to processing what this new life would mean for me. A year ago I was a different person than who I was before I got sick and today I sit here a different person than who I was when I first got sick. It’s been an interesting journey. I have been through some battles that many do not know about. Unless you were there during my struggles you probably do not know what I faced entirely. I’m a strong woman and I knew it was going to be a long process of learning to live with my illnesses.
She has helped me come to terms with the different obstacles that I encounter with being sick. From the daily symptoms, medications, side effects, to the limitations that they put upon me. She has given me the tools to process how they changed my life. She allows me to talk things out, to process and has helped me on the journey of accepting this new life.
In the beginning there was a lot of uncertainty. A lot of unknown, too many questions. I learned quickly that I am rather afraid of the dark abysses of uncertainty. I did not deal well with not knowing what was going on with me. I dealt even worse with the fact that people kept telling me there was nothing wrong, even though I knew there was something going on. People let me down. People hurt me. My trust in the medical community decreased greatly during the first few months of my illness. I was left with a form of PTSD because of some of the things that happened. It has taken many sessions of talking about the details of what transpired to get me where I am today with recovering from those first few months of being sick.
Truth is, I’m a different person. I will never be who I was before I got sick. Life changed, I have adapted, and with that I have changed, mentally, emotionally, physically. I have grown in many ways. I have learned some new skills with dealing with my anxiety. There isn’t a day that goes by that I’m not affected by my illness in some way. It’s amazing how much of an impact this had, and how much changed, so quickly. I’m also always amazed at how quickly people judge me for changing, before they realize everything that I went and still go through. If anything this whole journey has been a very eye-opening experience.
I’m just now getting to a point where I can voice clearer to the people closer to me what my day-to-day life is like, and realize that even though they spend every day with me, even they didn’t realize what the last 1.5 years has been like entirely for me. Learning how to better communicate what I am going through has helped me deal with things because has lessened the feeling of isolation greatly. It is a work in progress.
Therapy and learning to deal with emotions and anxiety will always be a work in progress. Well worth it and a journey I’m willing to take and invest in.
I’m excited to see where things are in this department in 6 months, and again this time next year. It’s a process and I know it isn’t a linear process. I’ve been all over the place, and there are many aspects still left to process. I’m grateful for the progress I’ve made, for the peace I have been able to receive, and look forward to the healing still to come. It was therapy day again today. There’s a new table in my room. It’s larger and a little intrusive compared to the smaller black one that use to be there. New table aside it was a great session. Cover a lot of things today and I go back in 3 weeks.

Just book it, we will figure it out later

Here we are in March already. Time is flying and I blinked somewhere back in January and lost an entire month. The good news is, I didn’t lose an entire month to Lupus. Nope this time I lost it to normal life! I lost it to my studies of Reflexology, to being productive and just busy.

Things are going reasonably well for me right now. I’m about halfway through my certification program and I should be at a point of accepting clients by June. I’m rather excited about this. I would be lying if I tried to say I didn’t have some anxiety about how my body is going to hold up when I start working again. I will be in a supportive office with other amazing therapists and I know it will be an amazing experience though.

I was first introduced to Reflexology as a teenager by my aunt, who passed away from Autoimmune Hepatitis, so I feel rather passionate about my connection to this modality. In a way it is a way for me to keep her memory alive and honor her. I remember many a conversation with her about various reflex points and how they could benefit me. Especially the ones for migraines and nausea, as I have suffered from migraines since I was 11. As you can imagine my studies are bringing back some wonderful memories.

As far as health wise I had a small flare in my symptoms at the beginning March due to the bipolar weather we have here in North Carolina. The hot the cold, hot the cold weather pattern cause me a lot of pain in my joints and a few days of a continuous migraine. Luckily I was able to skip the round of Prednisone this time and just take a shot of Toradol and Phenergan to knock it down enough to get through. My INR has been amazing stable though, and in range. We’ve spaced my check to every 3 weeks now. That means on average I’m only going in 1-2 times a month now for those checks. It has been amazing, and such a change than every 2 weeks. I’ll enjoy this while it lasts!

Therapy is going well. She keeps reminding me I’m doing extremely well and that I can space my appointments out to 3-4 weeks but I honestly think keeping them at every two weeks is what is keeping me in the space that I am emotionally/mentally. Knowing I have that outlet, and safe space where I can go and get it all out every couple of weeks. So for now I’m going to continue seeing her every two weeks. It’s working, it’s not broken, why try to fix it.

Life is overall good. Busy, and never seems to slow down but good. I still have to take momentary pauses though when my body reminds me to. That’s something I’m not sure I’ll ever get use to. The days where I’m tired for no reason other than it’s just a brain fog, fatigue ridden lupus day. My time out days. I’m learning to use those for constructive things though. For now I use them for studying and catching up on small tasks. I’m not sure how I’ll handle them once I start seeing clients. But as the running joke at the office goes “Just book it, we will figure it out later.”

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.”