Autoimmune and allergic disease and my daily routine

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We all have a morning routine.  Most women’s involves hair and makeup, but mine’s a little different.  I’m very set in my ways, mine is almost exactly the same every morning.

I wake up.  I assess what hurts most, just a habit.  Usually it’s my spine, hips, shoulders, wrists and feet.  Often when I stand up and weight bear, that assessment changes.

I hobble to the kitchen and boil the kettle for coffee.  I like a nice, strong coffee in the morning.  I have had to adapt to not being able to have milk anymore – dairy allergy. Rice milk is watery and insipid, but it’s better than black coffee.

I take my pain medications – Targin 10mg if my pain is a 6, 20mg if my pain is higher than that, and 10mg of Oxynorm.  Targin is a slow release form of oxycodone and oxynorm is immediate release oxycodone. Then I hobble back to the couch to wait for those to kick in.

Oh wait, while I’m waiting for the kettle to boil I use my moisturising eye drops, because my eyes are always dry and gritty, especially in the mornings. I also take my thyroid replacement hormone for Hashimoto’s Thyroiditis.  I heat up two wheat packs, one to strap to my lumbar spine, because my spine is always at least an 8.  I have to ignore my spine in my overall pain assessment, because that pain is always there.  And I heat up another to stick on whatever else might be hurting. Usually that’s the right shoulder, although the left one is competing.  Lately my upper abdomen demands its turn at the heatpack as well.  My liver area is still tender, and every day I get a few sharp pain attacks. They are brief – five minutes or so – thankfully.

Ok, so pain meds on board, heat packs, thyroid, eye drops, back to the couch.

My kids get up and they grab breakfast and we chat about the day ahead and watch the morning show.  By 8am they are both on their buses to school.  By now I know how well my pain meds are working. If I have miscalculated and taken 10mg of Targin but am still in bad pain, I will take another 10mg of Targin in the hopes that the higher dose will get me moving.

If I’ve taken 20mg and the pain is still an 8, I realise that today is going to be a knockdown day, and there’s nothing I can do about it.

I head back to the kitchen and take my Prednisone (currently 15mg), Metformin for Polycystic Ovarian Syndrome, Folic Acid because it helps with my hormonal mood swings, and Aspirin for stroke prevention.  I also take (prescribed) vitamin D, because my levels always seem to be on the low side, and a probiotic supplement.

I’m reading more and more research about the gut and the microbiome, and its relevance in both autoimmune and allergic disease, and while some of it is clearly pseudoscience, there is a lot of value there.  I don’t know if my supplement can really provide the probiotics I need, but I have read enough positive research to feel it can’t hurt, and it’s very possible it will help, particularly with Eosinophilic Esophagitis.

I also take L-Arginine as recommended by my cardiologist to help with the endothelial dysfunction that raises my risk of athrosclerosis due to Coronary Microvascular Disease.

Then I try to have breakfast. Some days I just can’t face it. But I am really trying to eat, even though I don’t have an appetite. The lack of appetite may be due to my current acute liver disease, but I try to get down some gluten free cornflakes with rice milk, or porridge…something light and simple.

I usually remember somewhere along the way to grab my hearing aid and put it in.  Often in the morning when my kids get up and I realise that I can’t hear them, and that reminds me.  My hearing seems to be deteriorating rapidly and I find its not helping as much as it used to.  I’m not entitled to another free hearing test for another year though, and honestly, its low priority compared to everything else.

My most recent addition to my morning routine is a bronchodilator medication to open up my airways and allow me to breathe easier.  I have a spacer, and I take 2 puffs of Ventalin (albuterol) every four hours, or whenever I need it.  It works fast, and though it does give me head spins, it’salready helping. I can breathe much more deeply now, and get a full lungful of air.  Great feeling.

I’m even hoping to try a light exercise session today, but that might be my inate optimism kicking in. Until recently gym was a part of my weekly routine – on a good week I would get my 3 sessions in.  Recently I have been twice in the last four weeks.  Not doing so well on that front, but I’m ever hopeful.  I haven’t actually spent much time upright yet, so I will do some dishes and washing and reassess how I feel after that. If I get to gym, I will take my puffer in case my lungs don’t enjoy the exercise. My doctor has recommended light exercise and to slowly increase my cardiovascular exercise.  My lung function is as good as it is because I have been cardiovascularly fit most of my life. I used to run 5km most days, to keep fit, and to relieve stress.  I always knew it was good for me, but I am very glad that I led that life before this chronic life took over.  I would be in much worse shape had my lungs and heart not been in such good shape back then.

I will probably never be that fit again, but any fitness and cardio exercise will improve my lung function. I just need to go gently.  Totally my forte…haha.  I also need to do some resistance training for my muscle strength and to support my joints.  Some core work to support my degenerated spind.  I’ll do some bodyweight work at the gym if I’m feeling good after some light cardio.  Very light, very slow, very simple stuff.

Ok, so that’s eyes, ears, arthritis, insulin resistance, cardiovascular risk, hormones, gut health and lungs taken care of. High maintenance? Me? What makes you say that???

I use my eye drops several times a day, if they are quite bad I use my gel with vitamin A.  It is much thicker, and does a better job of moisturising and soothing my eyes.  It does stop me from seeing for a while though, so I only do that when I really need to.  I use the gel every night before bed, to moisturise my eyes overnight.  Very sexy look.

My vision is often blurred, but my ophthalmologist says my eyes are fine.  I was worried it was something neurological, but I really don’t know.  Keeping my eyes well moisturised is a start.  I often get stabbing headaches behind my eye or straight into my temple.  I can’t explain those, and have nothing to treat them.  They pass relatively quickly though.

Some days I wake up with severely inflamed eyes. They are red, painful and extremely light sensitive. I have had uveitis, scleritis, inflammation of various parts of the eye.  When that happens I use the gel, get myself into a darkened room, close my eyes and cover my head with blankets. The pain can be quite extreme and all I can do is wait it out. Usually four hours or so, and its bearable and I can come out from under the blankets.  This hasn’t happened in a while though, perhaps Xeljanz was helping with that too.

I take another dose of metformin at lunch time, and another at bed time.  I use capsaicin cream on my lumbar spine, I find it provides heat which soothes the pain, and it doesn’t smell like a locker room.  I continue with heat packs throughout the day, and on the worst days I spend the entire day under my heated throw.  My favourite thing is my heated throw.

By 2pm I need another dose of oxynorm (10mg of oxycodone).  Some days I need it sooner.  Very rare that I can get by without it, but while I was on Xeljanz I did have days where I could get by until 3 or even 4pm. I was also on less prednisone. But Xeljanz is gone.  I’m not on a DMARD of any note, and I have one last BDMARD (biological) choice left.  I see my rheumatologist tomorrow to discuss the situation. In light of my liver function and my lung function, I don’t know that I am healthy enough to start anything new right now. I’m also not sure I’m game.

I do have to drop my prednisone dose, however.  15mg per day is far too much. But right now I need it.  I need to stay stable for a while.  Tapering will introduce a whole new can of worms that I’m not ready to deal with right now.

Each evening I take another dose of metformin, and my hypertension medications.  I take two kinds of blood pressure medications, an Angiotensin II receptor blocker, and a thiazide diuretic which also dilates the blood vessels to decrease blood pressure.  These two medications are very effective and my blood pressure is finally under control.

I suspect no longer being on a biologic also helps, as I never had high blood pressure before I started biologics.  I really need to think hard about whether trying another biologic is right for me.  I haven’t had a lot of success, and there has been quite some harm done.  I have two to choose from, Rituxan and Actemra.  I can’t really think too much about it right now. I’ll see what my rheumatologist suggests, but this time I am making the final decision, not her.  I am leaning towards Rituxan, because it also treats CNS vasculitis, which is an ongoing suspicion for my neurological problems.  I am hoping to get a second opinion before I start anything new though.

And I take my Plaquenil.  It IS a DMARD (disease modifying antirheumatic drug) but it is the mildest one, and it does very little on its own. It’s main effect is in increasing the efficacy of stronger DMARDS like Methotrexate and Arava.  But it is good for people with Lupus, not even sure why, but I keep taking it for that reason, and because it isn’t doing any harm.  That’s pretty much where I’m at.  If a drug isn’t doing any harm, I consider myself lucky!

Lately most evenings I take a Valium.  And then another later so that I can sleep. I’m all out of Valium now, so I’ll have to try sleep without it.  Being that I also can’t drink my nightly glass of red, sleep is difficult.  I miss my glass of red – it did help with pain reduction and it did help me relax and get to sleep.  But until my liver is working much better than it is now, it’s not an option.

I have some melatonin, which helps me sleep sometimes.  I usually have trouble staying asleep though.

Just before bed I brush my teeth and fill my eyes with my prescription eye gel.  Lots of goop. But it helps a lot with eye inflammation.

And that’s it, I think.  My daily routine.  Simple, right?  So with all of that going on, I should be superwoman, right?  Well…not so much. But without all of that, I’m sure I’d be much worse.  And it’s just normal for me now.

Normal chronic life.

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