Problems and Other Tips
Always consult your doctor for any over the counter supplement, treatment or modality. I am sharing with you what works for me. There are lots of shady individuals out there that are selling products that do not work or bust after using them once. Be aware of scams and research what works for you. My Lupus and its friends (other secondary illnesses) have come uninvited to my body and leave me with symptoms of pain, dry mouth, mouth ulcers, itchy skin, sun rash and more.
Pain
Back in the 1980’s, I really didn’t have too much pain, I was in good shape working out, watching what I ate, and still chronic illnesses visited me. Fatigue is more than being tired, at 22 years old I had to take a nap every day.
Body pain came next, which started slowly; then I could not even be touched or hugged- my skin hurt. I am a huge hugger and now feared it, people would shake my hand when they were introduced, and their squeezing of my hand would ache until well after the greeting. My knees, shoulders, back, feet- it all ached and was crazy. So, what did I do about it. I did water exercises, yoga and light stretching. I shook your forearm instead of your hand. I had to say not now for a hug or touch. I took Motrin and took medication. Some medication worked, I had allergic reactions to most or couldn’t take something because it affected this or that organ or blood test. Now, I take medication that keeps my Lupus and friends lab work in check, it does not help all the pain or keep me from flaring. My go-tos for pain are Motrin/Tylenol, Voltaren cream, Salon Pas, ice packs, heating pads, massages, stretching and Chiropractor which are all approved by my doctor.
Dry Mouth/Ulcers
My dry mouth was followed by a lupus friend, Sjogren’s syndrome. (Pronounced, shoogun’s) or however you want to say it. Medications I was taking also affect my dry mouth. I do take fish oil that seems to help some, check with your doctor before trying anything new. Sjogren’s affects my eyes, mouth, vagina and skin, it dries everything out. The medication for my dry areas did not work for me so I went back to what works for me. You need to listen to your body and may need to make adjustments as you go along. For my dryness I use sugar free lozenges or gum, dry mouth toothpaste, dry mouth mouthwash (I prefer Biotin Products), drink lots of water, Replens, Eye drops 3X or more a day, sunglasses to keep wind and sun out of dry eyes, lots of lotion for skin, (Cerave is better than Nivea) Brand names are up to you, I have spent a ton of dollars trying so many- hope these work for you.
Brain Fog
Brain fog may be referred to as forgetful, haze, or even brain dead; it’s more than forgetful, it is trying to find the word to describe something, and you can’t think of it, so you play charades or just clam up. For me, it’s all the above and with menopause it’s worse. How to help brain fog, I know I need more sleep, I write lists, reminders on phone, I ask my family to help me remember. I look at my calendar before I sleep, when I get up and in between. I have learned this is cognitive function at its worst. It’s hard to focus on things, recalling things, multi-tasking, following long conversations, headaches, not sleeping, paying attention, mental exhaustion and irritable mood swings. I know people who keep journals, which seems to help. I believe you must give yourself grace. Being Chronically Ill, keeps you juggling so many health balls on top of normal life responsibilities; the balls get out of whack, and some will be dropped. It’s okay to do less-give yourself grace.
Itchy Skin
Itchy skin, the thing that keeps you from sleeping. I am not itchy due to a new cleaning product or lotion I use. No, it’s a chronic itch and you will use anything to stop it. I have scratched my back with a hairbrush, scissors, whatever I can find. I use hydrocortisone, prescription anti-itch medicine called Triamcinolone Acetonide Cream and I use clear calamine lotion. I cut my nails so I don’t open wounds that can get infected and then have other issues. My prescription is from my dermatologist. Cotton light clothing is best for me too.
Sun Protection
Lupus can flare up by the sun or ultraviolet lights, so I have a few sun tricks that have helped me. Even when the sun is not shining wear sunblock under your make-up, on hands, arms, chests, earlobes and legs. I use Neutrogena SPF 30 or more. It is not sticky and goes on great under make-up. Now you need to heap it on! I had a doctor tell me it should fill a shot glass for coverage of each area. I wear sunblock every day, sunglasses when I go outside and wear both at the dentist office or any office or building with bright lights. Your practice of using sunscreen will become routine, now a days many over the counter ones can be used in your tax-exempt saving plan FSA or HSA. SPF clothing is good for protection from the sun. A lot of companies sell SPF clothing, and the styles have improved over the years. You can find SPF clothing on clearance and save money. The dye RIT has an SPF dye that you can wash your regular clothes in to help you stay protected. I wear clear zinc on my face and if I feel like I am burning or appear red while in the sun. You must keep reapplying for the duration of your day. I have found cute hats with wider brims in the golf apparel shop and just about any market.
Emergency Bag
Chronically Ill people have a bag or list of things to put in a bag for Emergencies. Many times, a regular appointment can turn into a stay at “Club Med”. A hospital stay is stressful enough to know what you need for some comfort while in Club Med. Preparation will help with your success and positive mind set. I use my travel carry-on with wheels. In the carry-on I keep underwear (I am not a fan of being commando), toothbrush, toothpaste, my mouth lozenges/gum, lotion, lip balm, hairbrush with hair ties, my kindle, phone and chargers with plug, $5, any other personal item you might need and a cozy blanket. You do not need medication they will not let you take them. No snacks you most likely won’t be allowed to eat, if you can eat use the $5, it comes in handy. Most floors in the hospital have snacks and beverages and a menu for meals. A plug and phone cord once cost us $40 from the hospital store, so don’t forget those. Now you are in the hospital and everyone and their uncle wants to visit. It is totally up to you. For me it depends if I am in extreme pain, I will not be nice and hopefully not awake so no. Never first thing in morning – doctors are doing rounds and all visitors should step out of your room for your privacy. In the morning you are getting cleaned up either on your own or with help, again not a good time. I find that between 9:30am-1 or 2pm are best times. Visitors need to plan on only staying about an hour. Hospital patients need rest to heal. Of course, it is nice to get visits. It all depends on many factors and don’t be shy, set your boundaries.
Doctor Approval
I keep reiterating to check with your doctor or health provider before taking any supplements or medications, I have a good reason over and above of covering my butt. This is a true story of a very good friend; I have permission to share and will not use real names.
Many people have a poor opinion of themselves. When I gained 70+ pounds I was mortified, uncomfortable in my body, couldn’t tie my shoes, many people had unsolicited advice and were not nice. So not only do you know you are overweight, but people judge you for it. If you have never experienced this, you are lucky, but I do believe many people have unfortunately been there. You want to improve yourself and sometimes exercise and dieting are just not enough, so you turn to the internet or that great supplement that promises you will lose a ton of weight in a month, and your beach body will be fabulous.
I caution you because my friend’s son tried a Green Tea supplement in hopes to lose weight and get healthy. This young adult was an EMT and wanted to lose some weight. He was getting ready for work like any normal day, and he did not make it. He called his mom and told her he did not feel good and went to the ER. He was sent by ambulance to a trauma center hospital where his liver was shutting down. Within a day or two this young, knowledgeable, talented man was pronounced dead. His parents found the supplement in his apartment and after further research found out the Green Tea supplement he took does affect the liver. It is still being sold today on Amazon and in many stores. Before purchasing anything for weight loss, or your chronic illness, please investigate it, ask your doctor and medical specialists first. In your search for the quick fix, you may create another issue or have a terrible outcome.
The experts on the internet are not doctors or pharmacists and do not know what medications you take or have reacted to in the past. Many drugs are contra-indicated, which simply means should not be taken at the same time. If you want to try something, talk to your doctor about it.
Other tips coming soon..
