My Lupus Arsenal
With chronic illness, it takes a lot of “equipment” to manage my day to day activities. I mean it’s not just your prescribed daily medications. For me, it’s an arsenal. I suffer from lupus, Raynaud’s syndrome, Sjogren’s syndrome, fibromyalgia, costochondritis, chronic fatigue, chronic UTIs, vitiligo, chronic GI issues, RA, hypothyroidism, MCTD (mixed connective tissue disease), and for kicks, endometriosis.
With these diseases, there is a large number of medications I take, and equipment needed to survive. These make my life more comfortable. Sadly, with medications come side effects. Managing side effects of medications, interactions, etc. is also a second full-time job. However, over the years I have created these routines that have helped me and I hope I can help up you in your lupus journey.
Creams such as Voltaren, Estrace, are also used daily and/or as needed. Voltaren is a great pain and inflammation topical supplement. Estrace is used to combat the effects of medications like prednisone and Sjogren’s syndrome.
Which leads to auxiliary medications. If I have chills and fevers or flank pain, I take my already written scripts to the lab. Upon results, I triage per my doctor’s orders. With chronic kidney and organ infections, it is critical to attack the issues quickly to prevent further issues. Post the lab draw I start with a standard antibiotic, till results are back. In which case I may have to change the antibiotic for the bacteria invasion once results are in.
Unexpected flare-up items
At times there are unexpected flare-ups. Luckily with technology today, I do not need to necessarily be in the doctor’s office for treatment. For example, with flare-ups, I can easily send the doctor pictures of flares. If treatment is needed, I have all the necessities at home awaiting medical instruction. At times it is to take prednisone, Medrol pack, I have these items on hand.
Sometimes with an RA or connective tissue flare, a little support goes a long way. Compression socks also help me move on bad days. I have every joint brace and firmness on hand. These items tend to be a bit expensive. I have collected mine over the years or as needed immediately.
Heating pads and icepacks
Heating pads and icepacks are also a necessity of daily life. Waking up stiff, heat helps grease the wheels. Sometimes ice helps, but it has to be followed by heat due to my Raynaud’s.
Heated vest and heated gloves
With Raynaud’s you never know when you need a little heat. I find if I keep my core warm then my extremities are warm. So even in summer months, I'd rather sweat than feel the pain of pins and needles in my hand. My light weighted vest is great for varying days, but if I get a chill, I just turn it on to warm me up.
As if the medication I am on isn’t enough, supplements do exactly that. Supplement my life. Things such as vitamin D are a necessity to keep my deficiency up. Many of the medications create nausea, constipation, or diarrhea. So digestive health supplements are a necessity to make it through the day.
Cups, stem, and massage tools
At times when my connective tissue and fibroids are unbearable. Soft massage techniques tend to be lifesavers since regular massage therapists tend not to work for me.
What's in your arsenal? I would love to hear your tips and tricks to make it through the day. I know I can still learn plenty from others. I hope you were able to take a little something away from this that might help you with your lupus journey. Till next time.
Did you have the Epstein-Barr virus (EBV) or Mononucleosis (mono) before learning about your lupus diagnosis?