I was diagnosed with Lupus about a year ago maybe a year and a half and to say it’s been a journey is an understatement. Mind you I’m months away from turning 50 and this lady didn’t see that one coming but I wanted to do this editorial because of what I’ve learned and dealt with since the initial diagnoses. I wanted to shed some light into the process of treatment and emotional ups and downs as an individual coping with this new chapter that my body is going through. Mind you this is what I’ve gone through everyone goes through it differently and copes with it differently so please keep that in mind as you read this.
The first question you might have is the same one that I had and that was why did it take so long to come to the light that I even had it?
Well it seems that normally it takes years for you to get the diagnoses because if your not looking for it, some of the common symptoms are the same for other illnesses as well and I also have a condition called PECOS and so like I said if your not looking for it you could just assume everything was just of the PECOS and as I grew out of my teens and early 20’s I didn’t have any major health issues until I got the PECOS diagnoses. Now it’s no secret that I’ve shared on this site that during covid I was injured and that’s where my Lupus Journey actually began. Not aware of it yet but BOY did I find out. I worked in healthcare and during Covid I took care of isolation residents and not knowing I had an autoimmune disorder I caught a few infections that doctor’s referred to as a super storm of infections which caused a wound. I spent 3 1/2 months on bed rest and because of Covid my physical therapy was delayed. In my mind that was going to be my challenge getting my strength back in my hip because I had to wait. Limited walking, exercise or bending. But my body wasn’t regrouping like the doctor thought it should. Especially my new Primary doctor. So she started the process to figure out what was wrong and that’s how we came to the Lupus chapter to this story.
Now if you look at the picture on the left side of this page you can see I am not a small woman so part of my journey is dealing with doctors who feel like there’s nothing wrong with me that losing weight can’t cure. Don’t get me wrong I will never say being overweight doesn’t help me but it’s not the root of everything that can be wrong with a person especially me.
So with that being said PLEASE try to understand a persons frustration because there is no straight answer to the why? How? Looking for knowledge to understand can be difficult for them let alone to explain to others.
You have to reduce your stress drastically but in the beginning for me was the joint pain. Like I said everyone has different experiences with lupus but the joints for me are making up for lost time. the best way I can describe it is like your sockets are throbbing like someone hammered them back into place instead of twisting them. That’s your shoulders, neck,elbows, fingers, wrist and ankles. You can sometimes get a warning that it’s coming but also none but to the outside looking in you look fine. I can say that discovering lupus has been a blessing and a curse.
I thought growing up I had a high tolerance for pain but I can say with a smile I was soooo wrong. I find humor even in the darkest aspects of life and this is no exception. I feel blessed when I can inhale with ease and sharpen my sarcasm when I can’t because you can’t get comfortable to inhale air. I’ve learned I’m not the strongest person that I thought I was and I also learned who’s there for me honestly and not just because you don’t want to be talked about because you’re not. Going through a Lupus journey is very costly and I don’t think that’s ever really talked about. With good fare or no insurance the process drains you not just mentally and physically. There are medications and some treatments that not all insurances cover so you have to keep that in perspective when it comes to treatments and not be afraid when you learn that there are so many different aspects of the illness and when you show signs of them….you have to inform your doctors. Like there’s something called Lupus brain fog. You would think it’s just a memory issue but it’s not. It deals with your nervous system and seizures. Which means more procedures and tests and medications and side effects etc. etc. In the beginning seizures are like when you’re ticklish and someone comes from behind and finds the worse spot and makes you jump. The worst part is wiggling around with no control not even being able to close your eyes as it happens. You’re stuck in your head until it passes and pray that it will pass soon. Then turning into a ginnie pig to figure out what’s right to help control your body to live better BUT again while you’re going through this you look normal. The fatigue is looked at as lazy when you just want your drive back but you’re lucky if you make it out of your bedroom. Your energy is low most of the time and you have to learn how to express this to your loved ones and not sound like you’re giving excuses because as I repeat you look normal. But besides your loved ones you have to remind yourself of this to yourself.
Lupus attacks your organs, skin, kidneys,heart,lungs, nerves or blood cells. When you have lupus symptoms, you are having flares or relapses. When your symptoms get better, you are in remission. Lupus may get worse very quickly. There is no way to tell when a flare will happen or how bad it will be. When you have a lupus flare, you may have new symptoms as well as symptoms you have had in the past. Lupus attacks usually caused by some type of Inflammation is a key ingredient to some flares no matter what part of your body is affected. Changing your diet helps and moving around definitely helps but you have to pace yourself. And coming from a person whose lungs takes the longest to regroup its the slowest to regroup from so slow as a snail with breaks in between simple things like doing laundry or cooking but remember I look NORMAL during this process so keeping that balance of knowing what you have to do along with what people expect of you is very different. I’ve learned to not ignore the bad behavior of others and their idea of being lazy vs being sick and not affecting my mental health along with you already beating yourself up for not being YOUR normal. Because as much as I want to say you can change people, reality is you can’t always and learning to get use to it helps you focus on what you should focus on and that’s your health and not that person’s bad behavior because their not living your life you are. Plus a thicker skin can’t hurt either.
What I would want people to understand is that before you open your mouth with negative opinions and comments to think? If you really know that person is the situation they are in is something you think they are content with? Is this the life change they saw themselves having? Is your attitude helping or hurting them? Like I said I’m only going from what I’ve been dealing with and in a short period of time. It’s a lot of information to process at a slow pace. Support groups are widespread but not on a constant basis, so when people say you never know what another person is going through until your in their shoes, try to remember that when your dealing with someone going through something. It’s a process and kindness goes a lot further than you think these days. I have a small group of people I can go to for bad days and I’m learning how to let people see the really bad ones when that’s the last thing you want to share even when that’s the only thing that’s happening. I think once people can get past what the LOOK of illness is I believe that more understanding is possible and common ground is reachable.
Thanks for reading!
Deidre Gibbs
HPS Magazine 