This is going to be a personal explanation of how Lupus affects my life. I’m not going to get into too much of the literal description, as we can find that online. This is the knock down, drag out, FIGHT against a disease that’s not known as anything other than something bad by most people. (Which I plan to shed some light on and help others understand.) Some of these symptoms are also experienced with MS, Fibromyalgia, and Chronic Fatigue Syndrome, etc. I’ll also explain the paths that I’ve taken that have helped to lessen the symptoms.
I went through years of misdiagnosis, as you can see here:
For those with family members or friends who just “Don’t get it.”, here are two of my articles that can help:
I’m going to start with an experience that I had recently. I live in Maine and this will be the first Winter since 2010/2011 that I’ll have my own vehicle. YAY, in so many ways! Uh Oh, in other ways. Namely, clearing snow off of my small SUV. My other option would be free Winter Relief Parking, with a 5 city block walk in the blusteryness. So, I decided to buy a nifty snow rake this year. On days that my arms work better than my hips, I’ll have an easier time with this splendid device.
I’ve worried that buying it would get pushed further down on my list of “To Do’s”, and as it gets colder, I have much more pain and less ability to venture out. So, I went to my local auto parts store. I hobbled in with my cane and asked the man for a snow rake. He looked shocked and told me that I was first to ask. I said, “Yep, getting prepared.”, with a smile. They had to go and dig it out of an unopened box. Another guy joked around that it was supposed to be 105 degrees the next day (not true). I replied jokingly, “If we get a freak storm next month, you know who to blame.” Well, when the guy came back with the snow rake, 4 male employees in there really started laughing and saying how ridiculous it was and how “she” should come back for another one next Spring, too (like I wasn’t even standing there). To which I replied, “It’s not that funny, guys.”, hoping that they’d knock it off before I had to make them feel completely foolish. Onward they go…getting more and more insulting. I looked to the ring leader and said, “I have Lupus and I’m not able to get out much, so I really appreciate this.” (My tone of voice showing that I didn’t appreciate it one bit.)
BOY, did they zip their lips and scatter like cockroaches! The one that I commented to could only mutter, “Oh really, Wow! Thank you for your purchase.” I finished my transaction with the guy next to him (who was the “105 degrees” guy, who then fumbled with my receipt awkwardly). I said my “Take Care’s” and hobbled my way back out.
Those men didn’t know that I had to choose that errand over a shower. They’re fooled by the fact that I choose to dress nicely (yet uncomfortably) when I’d really like to show up everywhere in my comfy, old gym clothes. They don’t realize that my hips are dreading the extra walking that I need to do and that I’m praying for them not to dislocate.
Lupus can be mild to life threatening. When your white cells send out antibodies to attack, there’s no telling what a confused immune system (from what I think is years upon years of exposure to toxic chemicals in our environment, food, and medicine) will target. My immune system has destroyed cartilage to the point where my ribs and hips can’t stay in place with even minimal pressure. I can’t open heavy doors or use my hip to keep them open. It has also deteriorated the lining of my bladder which is EXTREMELY painful. (This has its own diagnoses of Interstitial Cystitis, but it stems from the same issue.)
Here are some of the things about Lupus that the web won’t tell you. You should really live in a bubble. Yup, that would make life better. If someone with Lupus comes into contact with bacteria, they will be sicker than someone with a normally functioning immune system, and most times for about 3 times as long.
I’m very strict about washing all of my veggies that I eat raw with a 50/50 solution of peroxide and water. I also stay far away from any produce that’s showing signs of even slightly going bad. I had a 2 day vomiting episode from a too mushy, brown spot on a banana, never again!
If your allergies are triggered, a domino effect happens and signals your immune system to search and destroy. You can feel the “flare” throughout your entire body. Your eyes burn, your skin itches intensely, your joints and muscles feel like your worst injuries all at once, your nerves feel like you have a constant electric shock going through them, and your body feels like the time that you had the worst flu, but triple that.
The exhaustion that comes with Lupus can’t be related to anything that I’ve experienced before. Pretty much, it feels like anesthesia. Sometimes, I can sleep all night and have a 3 hour nap during the day, but barely have the energy to get my little dog outside. It certainly feels like you haven’t slept in days.
Sunlight triggers rashes that feel worse than a horrible sunburn. When it’s 80 degrees or above outside, it feels like I can’t breathe properly and like I’m carrying around twice my body weight. When it’s 40 degrees or below, every bone in my body feels like how a sensitive tooth does when you eat or drink something very cold. Bone chilling pain is an understatement.
Lupus causes you not only to bruise and injure easily, but healing time is severely stunted. Your body’s healing mechanism is actually malfunctioning and is off doing damage somewhere, instead of its job.
Lupus affects your cognitive function. Since Lupus eats away at any tissue it pleases, brain tissue isn’t off limits. Your memory goes from snappy to sluggish. You find yourself having trouble forming sentences properly. Following conversations and directions is harder and you’ll need to write EVERYTHING down.
Lupus comes along with sister diseases like Sjogren’s Syndrome and Raynaud’s Phenomenon:
Sjogren’s Syndrome can have similar systemic issues as Lupus, but the unique issues are that the immune system destroys your moisture producing glands, so you don’t produce enough saliva, or lubricating tears. It affects your skin, lungs, and nostrils as well. Breathing can be painful. It feels like you have a coating of sand or baby powder in your eyes, nose, mouth, throat, and lungs.
Raynaud’s Phenomenon causes circulatory issues that lead to cold hands and feet that turn blue-ish purple, or pale yellow/white. Having this on top of arthritis in your hands and feet makes using them very difficult. Add onto this that these numerous conditions cause neuropathies (nerve irritation) that also lead to numbness and difficulty with dexterity. I’ve found that I can only wash a few dishes at a time because my strength doesn’t last that long. I’ve also realized that I can’t knit without a loom, or play guitar (a newly learned skill) for very long. My novice, at best, piano playing skills have gotten rusty, too.
If you stay in a stationary position for too long (standing, sitting, or lying down), your joints will freeze up like the Tin Man. Gentle movement and stretching help this. I tried Aquatic Therapy and found it to be too much of a strain on my system. This is coming from someone who couldn’t wait to leave work to spend two hours at the gym. Here’s the old me in the Summer of 2007:
I can’t even begin to tell you how many people think that all I need is exercise. I miss this ability terribly and I strive to get back to it, yet I know what my body is and isn’t capable of right now. I even had a doctor tell me that all I needed to do was Jumping Jacks. I fired him and now refer to him as “Dr. Jumping Jacks”.
I watched my father go through Lupus for a year and a half before my diagnosis. I saw him flare, then save up energy to get on a ladder to clean out the gutters, then be in bed for a few days afterwards. That’s what happens to me as well. When I’m active one day, I find myself in bed the next.
Bodies with Lupus only have so much energy. I think that it’s because the body is always on attack and uses your energy that way. I tried to push through this early on in diagnosis and paid the price. I’ve learned to change my “plans” to “intentions” so that I don’t constantly feel like I missed the mark. You can read more about this in my article here:
I’ve learned to live moment by moment. I recently put together a bookcase that I had the pieces of sitting in my living room for 5 months. I knew that I’d eventually have a good enough day to complete it. I also knew that I’d pay for it and I’m still recuperating from putting it together on 9/4/13. However, the accomplishment far outweighs the pain.
Some with Lupus have much worse symptoms than I do, some can still work and exercise. Just like Cancer, Lupus invades every body differently.
Intestinal issues are rampant in people with Lupus. Celiac Disease is common. I have that under control, yet I’m still struggling with my digestion. I can eat 2800 calories a day and still continue to lose weight. There’s some sort of malabsorption going on. This comes from an imbalance in good gut bacteria, which is killed by the MAD (Modern American Diet). I’m increasing my intake of Fermented Veggies, Sole, Aloe Vera Juice, and Pau D’Arco tea. These are all healing agents.
I’ve noticed that diet plays a HUGE role in the severity of symptoms. For 2 years, I decided to try an extensive Elimination Diet and found the culprits of many things that increased inflammation, migraines, rashes, and fatigue. I plan to write on this topic in the future.
Unfortunately, my experience with Lupus has been disabling. I’ve received a lot of questions regarding the disability process. I’ll be writing about my 2 year battle for SSDI in the very near future. I used to work 50 hours a week, spend 8 hours a week at the gym, and go hiking or some other activity on the weekend. Lupus leaves you with a mind that wants your old lifestyle back in the worst way, but with a body that won’t cooperate. I realize that it took over 34 years for my health to deteriorate to this point, so with my new found healthy living, I’m wondering if I can reverse the damage. One thing about me is that I have hope even in the darkest of situations. I believe that has kept me from embracing Depression and Anxiety. Not that I haven’t had my fight with it, you can read about my journey through Depression and Anxiety here:
While there are many symptoms that haven’t budged yet, I’ve been able to heal the lacerations on my eyes from Sjogren’s Syndrome, naturally. After many costly and ineffective drops and ointments, I found a real solution to the problem. You can read about that here:
I’ve also been able to greatly reduce my inflammation by knowing the Inflammation Factor of foods. You can read about that in my article here:
There are many things that have made Lupus worse for me because of their chemical or hormonal make up, or the process of creating or refining them. Also, anything that’s estrogenic has made life worse for me by prompting migraines, difficult menstrual cycles, and flares in general. Here’s a list of only SOME of the things that I’ve removed from my home/diet:
- Commercial Toiletries
- Commercial Household Cleaners
- Table Salt (Pink Himalayan Salt can stabilize mineral imbalance from a poor diet.)
- Garlic/Onions (Anything in the Allicin family.)
- Nightshade Vegetables (Potatoes, Tomatoes, Peppers, etc.)
- Animal Products (Including all forms of Dairy.)
- Beans (Due to Phytic Acid.)
- Citric Acid
- Titanium Dioxide
- Oats (Estrogenic)
- Soy (Estrogenic) (And, it’s NOT the health food that it’s touted to be, that’s all marketing for Big Business. More on this to come!)
I’ll be writing an article on Soy, and my personal experience with it, soon. Here’s an excellent book about “The Hidden Dangers of Soy”. Dianne Gregg’s story was written as if she was talking to a friend, but her informative sections were factual and concise:
I urge you to start reading labels and type just one thing a day into Wikipedia. If you scroll to “Health & Safety”, or read the about the process of production, you’ll wonder why we even ingest these things. Additives like Carrageenan are known to cause gastrointestinal disease in laboratory animals, including ulcerative colitis-like disease, intestinal lesions, and ulcerations. Everything that I’ve removed from my diet leads directly to disease. We ARE what we eat. The cure is literally right under our nose, it’s our mouth and what we choose to put in it. Also, I honestly believe that GMO’s are also to blame for the rise in all disease, including Lupus.
Now, I eat a very strict diet. I hardly ever eat outside of the home and when I do it’s at a Thai restaurant down the road that I’ve modified a veggie and rice dish to remove everything that would cause me to flare, or get sick. I’ve found that animal products make my life much worse. So, even though I drooled worse than a dog when it came to bacon and cheese, I choose differently now because I want less symptoms. You can read my article about Vegan benefits here:
I know that it has helped because I spend less time in bed. I used to only get out of the house twice a week for maybe 6 hours, tops. Now, it’s 3 times a week for about 9 hours! My good days are still not predictable, but my progress is giving me more hope for the future.
I’ve also learned how much our thinking impacts our health. Here are a few of my articles that will help you to see how our thoughts affect our body and prevent the possibility of healing:
While I haven’t been able to heal anything other than small things (For now!), I’ve seen major improvements in many little areas. Those little things all add up! Some things are still very hard for me. I’ve only been on the path to healing through diet for 2 years, with most of the major diet changes having been just in the past 6 months. So, I definitely need to give it more time.
My last piece of advice is on Food Combining. Did you know that there’s a way that our bodies work their best? And, it’s not the balanced meal that the FDA suggests. Here’s the link to many informative charts on this topic:
I’ll be writing in depth on how Food Combining has helped me, in the future. I’ve learned that most of what the government tells us about health is FAR from healthy. Remember, they’re out for profits! The sicker and more addicted to food we are, the more money that Monsanto, Insurance Companies, Hospitals, and Pharmaceutical Companies make! It was easier for me to quit smoking than to stop eating certain processed foods. I believe that’s from the HUGE amounts of addictive chemical additives in them! They’ve got us HOOKED!
Please question everything that you’ve ever been told about health and you WILL be healthier for it!
I look forward to continuing to tell you how I’ve healed, little by little. Thank you for being part of my journey.