To a lot of people a Lupus diagnosis is a terrible thing, a shock, a disappointment, something that changes how they will live their life, something that they cannot deal with. However, I am so strangely happy to have this diagnosis because I know my body is sick. There is no question in my mind about that! I can’t get better until Dr.’s know what is wrong, believe my symptoms and treat me, so I am fine with this diagnosis. I’m relieved! I just want to get help!
“I don’t feel very much like Pooh today,” said Pooh.
-A.A. Milne
“There there,” said Piglet. “I’ll bring you tea and honey until you do.”
Lupus isn’t the death sentence it once was. Most cases can be controlled and most people can go on to live normal life-spans with proper treatment. The most commonly used drug is the anti-malarial, Plaquenil, or hydroxychloroquine, made from quinine. Doctors aren’t 100% sure how it works but it does and its a very safe drug to use, even safer than long-term ibuprofen. It keeps my immune system cells from attacking and attaching to my normal cells so my body doesn’t feel exhausted like its sick all the time, and doesn’t start arthritis pain and joint swelling. (How many, many times over the years did I have to cancel plans because I felt so terrible?) I stopped making plans and accepting invitations because it was so hard. I lived like a recluse because this disease owned my body. I was very, very ill. I made plans to not replace any of our senior pets when they died and to move into a smaller house when my baby graduates because I could not care for my pets or home anymore. I shopped for and made plans for that wheelchair because I could not stand or walk long. I was getting worse and worse. It was so scary. I literally wasn’t going to be able to work this year.
But now? Now I am free. Free of pain, free of sickness, free of exhaustion, free of brain fog, and free of pain. Did I mention I’m free of pain? I feel like Ive been given a second chance, like Ive been healed and born again all rolled into one wonderful big package of freedom.
I feel like my life has changed so much in just over a few months. I’m scared it will go back again, but I haven’t been pain-free for this many consecutive days in years.
However I still have and will always have Lupus. And over the last 4 months I still have bad days and even flare-ups. So I’m researching the best ways to take care of myself. I will be managing this disease for the rest of my life. But honestly, I’ve been trying to manage it forever- I just didn’t know what it was.
First things first- I try to let my family know that they are always first in my life, no matter what. Yes there are times when I cannot put them first but I don’t want them to feel that they are not loved because they are. God is first too. I pray, a lot. Just talking to God throughout my day and practicing stopping and being grateful for what I have is important to me and it makes a huge difference. I can only do this life with him and through him.
I can do all things through Christ who strengthens me.
Phillippians 4:13
Then, I take care of my heart and soul! Stress is not good for autoimmune conditions and can cause flares. I say no to a LOT of things, or I say not now, maybe later. I put up with a whole lot less bull than I used to. Managing chronic pain helps you cut that crap and shove it away real fast. Lol Here are other things that help with stress:
I have a “soft start” every morning. Mornings can be really hard, especially during a flare. If I’m in a flare I have a lot more pain and I usually wake up with a migraine so I will have black tea, ibuprofen and my plaquenil right away to get to feeling better. I light a candle or use a very soft light, watch a soothing youtube video (love The Unexpected Gypsy, & Kristin & Georg) art journal, do my makeup and drink my tea warm and cozy in bed. Then I dress to shoes and finish getting ready. I try to follow my Flylady routines no matter what. They are like autopilot by now and they set me up for success. I pre-make family lunches every weekend so I can just grab and go on to work after getting ready. At work I also follow my Flylady routines! At the end of the day I try to have a “soft end” when I go to bed. To me this means soft light, maybe an old movie, book, let creativity happen. Fill my soul. Prayer and faith journaling. It is also a pleasure to look on pictures of my family and my lovely things like my favorite china cup and little beautiful treasures. I know that sounds silly, but it really does help.
Another thing that keeps stress at bay is being proactive, not reactive- which is a huge thing with the Flylady system. And it works. As much as I can do I do before I need to have it done-menus, laundry, cooking, cleaning, lesson plans, copies, etc. I can’t tell you how many, many times this has saved me. It also cuts the stress a lot. The terrible thing about Lupus is I never know when I’m going to feel awful. When systems are ready, in place, and stocked(!) you don’t have to think, plus I can still function even when I don’t feel good! My husband is a huge help. He often times has to step in a help me and I can always count on him. He is such a blessing to me.
Mental health is part of the stress problem too. I have found that journaling my problems has helped me immensely the past year. I use The Unexpected Gypsy’s journaling prompts and have found this to be an excellent way to help me open up and heal parts of myself. It helps me a lot- one of the things I’m working on is learning to set and keep appropriate boundaries. I’ve spent so long being ill and keeping people away because I was too sick to even have friends that I am trying to do better on that front. I keep telling myself to open my gate (my boundary gate)! I also practice faith journaling which has brought me so much comfort for years and has given me renewed faith in and strength from God.
Create. Every day I can. Put the pencil in my hand and make a mark.
Listen to the brush swish in the water- it knows where it wants to go.
Now, on to other ways I can live beautifully! The next thing is taking care of my body. This means listening to it, but also making it do what it doesn’t want to do (cough, exercise, cough). Exercise is so important and the reason that I believe I have lived for years managing my Lupus pretty well while not knowing what it was. I have a Schwinn Airdyne exercise bike and I ride it every night possible for 20-30 minutes. I have done this for the last 16 years. Exercise does make a difference! It slows disease progression and reduces all symptoms! I primarily ride in the evenings during the school year. I sleep like a baby after my workout and a shower. If its summer then I don’t ride as much. I swim laps in the pool. Swimming is amazing for my mental and physical health. The extreme mindfulness of breath holding, the feeling of the water, the workout- its glorious! I swim after lunch and feel great all day. (I don’t seem to have the SPF sensitivity of a lot of people who have Lupus- but I still wear sunscreen and stay mindful of my time outside.)
I had to find exercise that was right for me. I knew if I had to drive to a gym it wouldn’t happen- I never knew if I was going to feel bad. I wanted it to be no big deal to exercise- just hop on the bike and do it! I also needed something I could do inside. I don’t feel comfortable exercising in public. Mornings were terrible for me. Afternoon or evening exercise was much better and I was able to stick with it! Watching tv, reading, and music while I pedaled also helped to turn off my brain and distract it from its “stinkin thinkin!” Because my brain was always trying to talk me out of exercise!
Next is food. There are lots of people that will tell you that you can go into remission through diet changes. Maybe that’s true for some people, but its never worked for me. I try to just be mindful that I eat fruits and vegetables and that I get plenty of lean proteins- beans, chicken, tuna, shrimp, turkey, eggs, are all favorites. One thing that has helped me has been intermittent fasting. Its helped me maintain my weight as I get older and break some really bad lifelong food habits like snacking. It has not helped my Lupus, but it has helped my overall health.
What do I do when I am having a flare-up (symptoms are back)? It depends on how bad it is. Last year I would have to miss work and sleep and be in writhing pain all day. Now, with my appropriate medication the flares aren’t too bad. I just follow my advice to myself (above) to help and it does. The flares can last days, or even more than a week ( they used to be almost constant), but they are manageable. They are typically made of three things:
Fatigue- I try not to fight this and as soon as I can I go back to bed and rest, even if I had to work all day. Doctors used to tell me I was depressed because at times I would sleep for 14 hours a day. Nowadays its not too bad. A 15 minute nap or going to bed a couple of hours earlier is all I need.
Brain Fog- honestly I had no idea this was Lupus. I thought I had ADHD, but as the Lupus got worse I found that there were times when I couldn’t remember things at all or even speak! It would just come out as gibberish, or very mixed up. Thankfully this doesn’t happen often!
Pain- the big bad wolf of the story. This is why I have slow, soft mornings. During a flare I have swollen, popping, painful joints-they can be anywhere on my body but of course, the last two years has been my lower back, hips, and pelvis. I also have pleurisy pain aka the devils grip in my chest which feels like knives slicing into your chest when you breathe. Then there are the migraines which are like the first horseman of the apocalypse- a warning of whats to come. Now that all of this is under control you can see just how happy I am to have finally gotten help!
As I was writing this I had to go to the ER one night. I had horrible, horrible chest pain that was very much like pleurisy, but only around my heart and it happened whether or not I was taking breaths.It woke me up out of a deep sleep. I didn’t think I was having a heart attack but I didn’t know what was going on. After testing concluded I did not have a heart attack I learned you can get a type of Pleurisy (inflammation around the sack of your lungs) from Lupus inflammation in the sack around your heart called Pericarditis. It was so, so painful, and so scary. I’m fine now and recovering, and happy to know that there was no damage to my heart. But ugh, sometimes I just get so sick of being sick.
I hope this finds you well. I promise I’m not turning this blog into a medical/health blog. It’s just that the last few months have brought some big changes in my life. I also hope that by sharing my experiences I can help someone who is sick with Lupus and doesn’t know what is wrong. This was me for years and years. I was always told I didn’t have Lupus because I don’t get the face rash. 30% of Lupus patients don’t!
Hopefully this post helps anyone struggling with illness, long or short-term. Again, my best advice is pray. He is always listening and working for your good.
Tender-full hugs to you from Kansas Street,
-Jaime
Life on Kansas Street 