I Dream

I dream. I wish. I hope…

Side effects are not too bad but they are there. I have begun with headaches, stomach pain, where the hole in my jaw was has begun aching and I’m worried any latent infection that might have been there has been revived. I’m dreading making my check up sooner because it’s so painful to drive and my Endodontist is ‘far’ from where we live, and a mouth ulcer on my tongue is forming.

That’s, of course, is nothing compared to how susceptible I now am to sickness. JAK inhibitors are worse than biologics with regards to making you vulnerable to catching disease, and you all know how we had to stop Enbrel so it never achieved efficacy. One, because you can’t be on an immunosuppressant while sick (obviously) and because I kept getting sick, once even going to Trauma, so I never got a chance to take it long enough to see if it would put me in remission, so we quit.

This time, I’m armed with the N95 mask my pulmonologist said I should wear in busy places. I have sanitizer in my car- though not helpful when I go for my limping Sunday shopping because we use my husband’s car and I don’t have extra sanitizer and I know if I remove mine, I’ll forget to return it.🤦🏾‍♀️

I’m better prepared to try AVOID getting sick.

But I can’t ignore the extremely high risk of heart problems, hospitalisation due to severe infection – a mask doesn’t keep you safe from bacteria. Remember how I almost had it have surgery when my finger got infected? The liver issue is big. And according to my insert, “frequent” just as people in my groups have experienced. Mouth sores, painful acne, stroke, sepsis… Very dangerous even without my already having damaged lungs thanks to AS itself. 🥹

So, if the side effects don’t become so severe that like many others, my rheumatologist pulls me off the meds, and I can get rid of these horrible headaches, heal my current sinus infection and escape from too many mouth sores and having Rinvoq WORK, what do I dream about?

I want to be the cook and baker I used to be. My four little ones don’t even know that person. I used to made delicious vegan zucchini chocolate cake. (I mention it because it sounds weird out of all the things I used to bake, but it worked well!We all loved it.) I made yummy kiwi fruit ice-creams. I baked and cooked on the same day. Today, just cooking is a whole day affair (also because I’m still mothering and teaching and doing therapy) and it’s becoming worse. I’m in so much pain and fatigue that I’m missing out on full activity with the children. So with cooking, I end up finishing late at night in extreme unbearable pain and don’t forget, I already take 10 pain and anti- inflammation tablets a day. I end up still in worse pain the next day I cook.

I’ve now opted to order frozen cooked meals for the family and then I cook the vegetables or make the salad to go with the meal, and just season and mix the food according to our taste. Even that hurts. It just hurts less and is quicker to achieve.

I can’t wait till I can split up the middle two children’s meds without suffering, forcing myself to keep going till I’ve broken the ones that need breaking, removed tablets form their blister packs, putting them into the relevant child’s weekly pill container and needing to recover thereafter because it’s too much standing.🥹This disease is cruel!

I miss baking. I miss the smells, the help I used to get from my now teens as little children. How they enjoyed licking the batter from the bowl and whisk. I enjoyed it soooo much, ever since I was 13 years old! I’m too young to not be able to do this!

I dream about being able to do all the school work and vision, occupational etc therapy I set out for the following day, instead of feeling like I’ve deprived my children of my best.

I dream about taking walks. Driving my children to see nature, or to a play park. And enjoying watching them marvel at the animals. I dream about enjoying going to the beach with them. I haven’t gone in over a year- they go with their dad because after five minutes, I’m hiding how in pain I am and I’m the first one to eventually call it quits while the children are still having fun splashing in the water.

This was the last outing I took with them and you can see the impact it had on me. And it’s been over a year now that my Nalo has been done with her Pharoah phase.

I dream about being able to make the bed without pain. To change bedding and be able to hang washing without shoulder pain and arms just not being able to continue without a long break. I miss piling all our laundry into one basket per load and carrying it out in one go instead of taking a few clothes at a time… I miss ironing. Those activities are so soothing to me. I miss being able to clean my own bedroom!! I sweep only maybe a square meter and I’m in too much pain to continue. (I also miss dusting. Yes, I know I must use a wet cloth so the dust doesn’t fly around and trigger illness. My rheumy did tell me.)

Even holding the children’s tablets is risky because my fingers don’t close properly and I’m dropping things a lot these days. Closing the children’s bottles hurts my fingers when i have to press down on the lid.

I dream of painless hands.

I dream of lungs that don’t progress in their scarring. I have begun my winter cough and it’s frightening the children because it sounds like I’m sick. That smoker’s cough that worried the GP so much that she wanted me to return before even a week was over. My pulmonologist made it clear that only finding the right treatment would slow down lung disease progression.

I dream of exercising.

I dream of being able to read to the children in the evenings. I can’t even lie in bed and read like I did most recently. Holding the book causes shoulder pain.

I hope that I get stronger, have less pain, my lungs stabilize and the chronic fatigue go away so my daughter stops worrying about me.

I dream about being normal.

Please God, may this be the one to stop the inflammation in bones, tendons and ligaments. To stop killing my lungs. It is possible. May it be MY reality.

ETA- in the meantime, I’ve now got another painful white ulcer on my hard palate at the top right to add to the tongue sore. PLEASE, let this be worth the increasing suffering. I haven’t even taken the tablets for a week yet. I hope we have here in SA, the “magic mouthwash” the States have that they tend to give to chemo patients who have terrible mouth sores that at least temporarily numbs the mouth-apparently a mixture of numbing gel and what not. I’ve bought folic acid and L-lysine because people said those sometimes help with these sores. One poor woman was told to stop the treatment because the sores were not going. It was sad because her disease was responding.

This is one frustrating disease. We live on dreams, dashed dreams, hopes fulfilled and hopes denied.

I dream of minimal to gone away side effects. Some do stop after a few months.