• Nichole Castillo

Top 10 Lupus Must Haves

The same way that there are certain supplies you may need for work or some of your hobbies, there are medical supplies that are must have when you have Lupus and other autoimmune diseases. These are the top ten items I have found to always carry with me when I’m on vacation or going to be out of my house for a while. You can find all of these items on my Amazon List which will be included in this article.

1. Blood Pressure Machine – Many people with Lupus are on Beta-blockers. When on Beta-blockers, it is important that you take your blood pressure before taking your medication. Usually, if your blood pressure and heart rate are low, many physicians will say to skip that dose so that it doesn’t drop even more so – but check with your physician first! Amazon has these on sale for anywhere from $18-$50 depending on your budget. This one is mine!

2.  Small First-Aid Kit – If you have low platelets, are prone to accidents, and need to be very careful every time you’re, well, anywhere, then you should very much consider purchasing a small first aid kit to have in the car or carry in your purse. Along with band-aids, mine has butteryfly closures, gauze, swabs, an emergency blanket, strip wound closures, eye pads, hypoallergenic tape, and more! We even added a bleeding kit which fit nicely. We usually take this everywhere we go, especially when we head up to the mountains. Though this might run a little more on the pricey side, starting around $40, it is well worth it! Here is the link.

3. Thermometer – A basic that every person with an autoimmune disease should have. It’s no secret that we are prone to running low fevers, and especially with the pandemic, it is even more important to be aware of what your temperature is. I go one step further and record my temperature, but more information on that later. These can be picked up at any pharmacy or local grocery store – though may be a bit more difficult to find now and start around $15. We use this one at home.

4. Sunblock – The sun is everyone’s worse nightmare! I swear sometimes I get headaches just by looking outside! So, we want to make sure that we are well protected, so that we don’t break into a flare. Our skin is so sensitive that it is vital that we use the right protection. When I asked my rheumatologist what sunblock would work best, she recommended Neutrogena Healthy Defense Daily Vitamin C & Vitamin E Face Moisturizer. It is a great light sunscreen with SPF 50. This is ideal for wearing to work or on errands and is great for everyday use. If you’re looking for something a bit heavier because you’re going to be outdoors, then I would go with Neutrogena Sheer Zinc Oxide Dry-Touch Sunscreen Lotion SPF 50. It is also water resistant and hypoallergenic. They both start around $10-$20 depending on size and where you buy.

5. Portable Daily Pill Organizer – With all of the medications we take, it is a mission to make sure we take the correct ones at the right time on the right day and throw in some brain fog, it becomes a nightmare! One way I’ve combatted this is by purchasing a daily pill organizer. I made sure to buy one of the bigger ones to hold ALL of my pills and each day is split into mornings and evenings which is great for me. In addition to this, I downloaded an app called Round where you can input all of your medications, the dosage, and schedule of when you need to take it, and it will alert you every time you need to take your medicine. What I like most about it is that it is like a checklist so you can take your meds one by one to ensure you’re taking the right ones. And the app is free! The pill organizer however will run you about $10.

6. Oximeter – This is a new one that I admit I just bought and apparently should have had for a while. Now, many people with autoimmune diseases are no strangers to chest pain and costochondritis, but when exactly is the pain too much? Well, to answer this question, my doctor had me purchase an oximeter so whenever I have chest pain, I can measure my oxygen levels. This happened, I want to say, after my second visit to the Emergency Room when my oxygen levels were below 85. The oximeter will also tell you your heart rate. This albeit pricey purchase comes in very handy especially when trying to decide whether or not to go to the hospital. They go for about $26.99, but I’m sure you can find it for cheaper online.

7. Heating Pad/Blanket – This is a savior when you’re in great pain and need something cozy and comforting. I can’t begin to tell you how many times I must have fallen asleep with my sleeping pad on. Luckily, it has an automatic timer and turns off by itself! So, before I used to use the clay heating pads that you would microwave and get a few minutes of heat from and then Angel introduced me to the most amazing invention – electric heating pads/blankets. For real, these things are awesome! If you don’t have one, do yourself a favor and get one ASAP! They’re about $20 depending on where you buy it. Personally, I’ve gone through a few and my favorite brand is Sunbeam because it lasts FOREVER!

8. Compressions Socks/Gloves – So, you wake up and the very first thing you feel is stiffness in your hands, feet, just everywhere. You take a few minutes to warm up, but it’s just one of the worst parts of your day. Try compression socks and gloves! I started using them a couple of years ago and they have made all the difference. The compression feels so nice around my fingers and feet and after a while I either forget I have them on or don’t need them anymore. They’re pretty reasonably priced, around $10, and totally worth it!

9. Salonpas Lidocain 4% Pain Relieving Gel-Patch – Sometimes we get pain in random places. We have joints everywhere and we never know what’s going to act up next, which is why I love these patches. You can put them on anywhere and unlike many other lidocaine patches, these actually stay put! I use them for across my back, my thighs, anywhere I’m in pain. I do use them sparingly though because they aren’t the cheapest, but I am very grateful for them. They have saved me from having to take more pain medication than I’m comfortable with. Try them out!

10. Thermos Vacuum Sealed Water Bottle – I know many people probably already have one and this might seem weird, but you’d be surprised at how often people get dehydrated and when you have Sjogren’s for example or are taking medication that dries your mouth out, it is so very important to stay hydrated. By the time you realize you’re thirsty, you’re already dehydrated. I know for me at least, every time they give me fluids at the hospital, my heart rate will go down and I feel much better (I have to get better at drinking more water too). So, I cannot stress how important it is to make sure you are drinking enough water. I’ve found that what gets me in the mood to drink water is to get a fun water bottle that also keeps my water super freaking cold, I do not like room temperature water and this water bottle does the trick! I think what motivates me to drink water is buying a reusable water bottle that I really like or perhaps one of those with the water schedule and motivating quotes. Bottoms up!

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