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.

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12 thoughts on “On The Road To A Happier Place

    1. Yes! It’s been a learning experience, facing a lot of things I didn’t realize I needed to face and I’ve learned a lot since meeting AL. A lot of the tools, I already had, I just needed a gentle reminder they were there and how to use them again. It’s amazing how bogged down you can get when you are living in fear, and covered with anxiety and depression. Your whole perspective is skewed. It is amazing to me how differently the world looked a few months ago vs how it looks to me today, and really the only difference is that I have a different perspective on things.

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      1. I’ve experienced that same feeling. It took me a while to get over the anger, disbelief and shock. When I did I could take action based on What I knew to be true. I understand this is what you’re doing. The hit; the reaction; taking stock; the action; and finally recovery of self.

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  1. Nicole you are always there for your husband and your best friend and everyone in your life. That is the best thing we can do and all that is needed – just to be there for the ones we love.

    Do not feel that you always have to be doing things – it is not necessary. I relate to what you say about not getting better. That was one of the most difficult things for me to get my head around when I got sick. Now, twenty years later, I don’t even think about getting better. My life is fine and as time passes I find that fear subsides. I wish all good things for you Nicole. 😊

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    1. Maria, You’re right, I am there for them during the times they need me. I need to get better at allowing them to return the favor. I’ve just never been good at being on this side of the coin. We aren’t conditioned to be chronically ill, or to have chronically ill people in our lives. From the time we are little, we are taught if you get sick, you take meds and you get better, or that the sickness will eventually go away. Then when we are faced with something like a chronic illness it takes us a while to change that perspective. I’m getting there, but there’s still that little voice that chirps every once in a while ‘hey, even with all these meds, you aren’t going to get better.’ So it’s frustrating to know I have to take all the meds, so I can function, but I still won’t get ‘better’. Then when you are trying to explain that to someone that has never faced a chronic illness…. sometimes they look at you like you are an alien. It’s a really odd position to be in. I know in time it will fade to the background, and just be a part of who I am. I look forward to that time. 🙂 I admire you btw and you give me so much hope! Thank you!

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      1. Sometimes I think that we are so conditioned to believe that everything can be ‘fixed’ and that there is a simple solution to every problem that it is astounding to realise this is not always true.

        Many chronic conditions remain mysterious because no-one knows what causes them. I am so very glad if I can give you hope, Nicole. Today I am visiting another art gallery in Sydney in a trendy suburb called Surrey Hills which has some really cool shops! Have a wonderful day, my friend. 😊

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      2. That is true, and when you find yourself in the ‘unfixable’ category it can really affect your whole perspective, mood, an such. Dr. C asks every few appointments how I’m doing and if he thinks I’m holding back he asks Doug if I’m really doing as ‘good’ as I say I am. I don’t usually hold back. I’m a straightforward individual. When it sucks I tell him when I’m coping well I tell him that too. I did well with this last flare. Who knows how the next one will affect me. Lol
        Oh can’t wait to hear about the art gallery! After my inr check yesterday we went and saw the new Transformers movie then later had dinner and coffee out. It was a stormy and rainy evening.

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      3. Good to hear you did well with your last flare. Flares used to scare me once but I cope well now.

        We visited the Brett Whitely gallery. He is one of my favourite artists – a brilliant draughtsman and painter. There was a special exhibition of his portraits including a very beautiful painting of his wife, Wendy.

        I bought a book about the gallery as a souvenir.
        Today we visited the Botanic Gardens in the Blue Mountains and it was 6 degrees C with blustering winds! Hope it’s warmer where you are, Nicole. 😊. Hope you had a great night out, too! (Despite the stormy weather)

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  2. Good for you for seeking therapy. CBT really works and can provide so much relief mentally. It’s weird all of the tricks our brains can play on us. Good luck to you, you’re in my thoughts! 🙂

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