Lisa Marie Blair

Tag: Chronic illness

  • 025 // Bad News Day

    It’s a lot to get into, but some news I had been dreading to receive, news I had just begun to hope wouldn’t come after all, came today. Long story short, my medication is damaging my liver and even though it is keeping the inflammation in my colon at bay, I will have have to cease taking it and start something new.

    If you live in America and you have a chronic illness you’ll have some idea how stressful it is to deal with insurance companies during treatment changes. First, there must be a cost analysis done to find out if, and how much of the cost they will cover. This medication will more than likely cost thousands of dollars a dose, the same as my last medication. How much my insurance will cover and how much I can get assistance for the rest will take time to work out and there is a possibility that it won’t.

    In the meantime, I a ball of stress and anxiety, a state that actually triggers and worsens my symptoms. What if we can’t afford the new medication? What if I am allergic to the new medication? What if the new medication doesn’t work? What if, while I’m waiting for the cost analysis and the financial assistance, my symptoms return or worsen? What if, what if, what if…?

    Of course, worrying does nothing, and like all things, I just have to wait for answers to come and deal with them as they do.

    But that is easier said than done.

    These entries are inspired by the journal posts of Thord D. Hedengren

  • If We Were Having Coffee // Strong Enough to Examine, and Change

    If We Were Having Coffee // Strong Enough to Examine, and Change

    Hello dear readers! Happy Sunday and welcome. Thank you for stopping by for a bit of caffeine and catching up.

    Waking up was a little easier today than most Sundays. I think knowing that I have an extra day away from work tomorrow makes it easier for me to get this day going. A three-day weekend really makes it clear how much a four-day work week would do for the human psyche and soul.

    So, pull up a chair and fill up a cup. The sun is shining and the temperatures are rising fast. It’s going to be the warmest week of the day and I plan to get out and soak up the sun while I can. So, quickly now, let’s talk about last week.

    “Presently the small of coffee began to fill the room. This was morning’s hallowed moment. In such a fragrance the perversity of the world is forgotten, and the soul is inspired with faith in the future…”

    Halldór Laxness, Independent People

    If we were having coffee, I would tell you that last week was good, I think. It was certainly not bad, but it was long and tiring. I’m beginning to believe the problem is with me and not with work or the world. I’ve been feeling especially tired for weeks now and as someone who has a chronic illness, I have learned to pay attention to my body and to take action when something is wrong. Better to make a few appointments and run a few tests now before things get bad.

    I’m at the halfway point between last months infusion day and next month’s. I’ve had a theory now that my infusion days are set too far apart and that I would do better at six-week intervals rather than eight. This month I’m tracking my symptoms and energy levels so I can present my case to the powers that be and get my treatment plan revised.

    In the meantime, I’m taking one day every week to simply rest. I got the idea last week from Eclectic Alli’s Weekend Coffee Share post and gave it a try myself yesterday. I talked about it a bit last night already but I want to say again to anyone that needs to hear it, acknowledging that you need to rest, giving yourself permission to do so, and even seeking a little reassurance from loved ones as I did with my fiance, can really go a long way.

    I was able to rest without anxiety and without guilt. I was able to really rest.

    If we were having coffee, I would tell you that this week was an okay writing week. It was better than last week, but I’m still struggling to finish the drafts I start and I still haven’t begun work on my larger projects. This coming week I’m going to keep on doing what I am doing and trusting that I will keep getting better as long as I keep stringing words together either on the screen or on the page. I have to trust in the long run and broaden my focus from the day-to-day.

    I’m not really disappointed though because even though it might have been a less than ideal writing week, it was a stellar reading week! I finished both Homer’s The Iliad and On the Genealogy of Moral by Friedrich Nietzsche, two books I had failed for months to get through in 2018. I started The Alchemist by Paulo Coelho. It’s very different from my last two reads but I think that is how I proceed best through books by jumping from one genre or time period to another radically different.

    Next, I’ve got The Soul of an Octopus by Sy Montgomery, then a couple of volumes of Saga comics, and then The Collected Poems of Emily Dickinson.

    If we were having coffee I would tell you that we’re over halfway through Dry January and I am finally seeing some benefits. I’ve lost weight, a surprising amount of weight and I do feel like I am sleeping better through the night than I have in a long, long time.

    I’m starting to think now of if, and how, I will return to alcohol once the month is over. I’ve broken my dependence on the need for alcohol to trigger a relaxing response after a hard or frustrating day at work. I no longer need to come home and pour a glass of wine or make a margarita on those especially hard days. I no longer feel that social gatherings or events require alcohol to be fun. I feel like I have a little more choice about when I drink, and I don’t want to lose that.

    Going forward, I will regulate alcohol to the realm of “special occasion”. It will be a once a week or less indulgence. When I purchase alcohol I will buy in smaller quantities so that I don’t have so much to “get through”.

    Drinking alcohol isn’t inherently a bad thing, and while I did indulge regularly, I didn’t and still do not, consider my relationship to alcohol to be problematic. It’s like sugar or fast food, or coffee even, it just became a habit and I want for all my habits to be a little less automatic. I’m proud of myself for being strong enough to examine and change.

    If we were having coffee, I would tell you that as much as I enjoy chatting with you the morning is moving on toward midday and I’ve got shopping to do and maybe a lunch date with my lady if I can leave soon enough.

    I hope you had a wonderful week. I hope you made some progress and if you experienced any setbacks; I hope you know you can start again as many times as you need. Get out and see the sun if you can, and rest without one iota of guilt if you can’t, okay?

    Until next time.

    Written for the #WeekendCoffeeShare link-up hosted by Eclectic Alli.

    Photo by Nathan Dumlao on Unsplash

  • 019 // Permission to Rest

    I got to spend the day on my own doing all the nothing I wanted. Last week I read a post from Eclectic Alli where she mentioned giving herself a much needed whole day of rest per week to help cope with her chronic illness. I was inspired.

    So, I finished my book and started another one. I watched a few shows and wrote a few words on this draft and that, and when I was ready I got up, reorganized some cabinets in the kitchen and showered. That was it and that was enough.

    I’ve had plenty of lazy days before but this was the first time I didn’t feel guilty about it. This was the first time I gave myself permission and acknowledged the reason. I too have a chronic illness, and chronic pain and chronic fatigue have been kicking my ass lately.

    It’s good for my body and for my piece of mind to make room to recuperate regularly. I just wish it was easier to allow.

    These entries are inspired by the journal posts of Thord D. Hedengren