Working from home today as I think I have a cold…not the flu! I hope!
Working from home today as I think I have a cold…not the flu! I hope!
…well… air hockey!
Bruises and a table top air hockey game should NOT go together. Had so much fun though!
I do this weekly.
It stings, but doesn’t hurt. I hate doing this, but I know it helps me.
Lupus, Rheumatoid Arthritis, Sjogren’s Syndrome, Raynaud’s Syndrome—crap. So…life.
Hey, y’all! It’s Carmen again. As most of you know, my mom has Lupus and had gastric sleeve surgery to aid with symptoms. I wanted to take a minute to talk about how this surgery from last year impacted me.
Before my mom had the sleeve surgery, Lupus kicked her butt. She had “down days” where she felt so fatigued and pained that she could barely move in her chair in the living room. She had to turn down outings with friends and family because her Lupus made her feel so tired (the “Spoon” theory is so great at explaining it).
Fast forward to Thanksgiving 2016. It had been just a few months since Mom had the surgery, and I couldn’t keep up with her when we were Black Friday shopping. She had so much energy, and I didn’t know what to do! It was like she was an entirely new person.
This summer, we went to Disney World – Mom’s first time to Disney since the weight loss surgery. When she was first diagnosed with Lupus, walking around the parks took a toll, and we rented a scooter to help Mom get around. This time, I wanted the scooter. Sure, there were moments that we both wanted to sit on a bench in the air conditioning, but it was so amazing to see her so full of life and enjoyment.
Since Mom has all this new energy, I feel inspired (or obligated) to get in shape myself so I can keep up with her. My excuse that I’m a typical tired college student can’t work this time, because Mom is also going back to school while working full time at the college (it’s awesome that we call each other and complain about classes – FINALLY she understands). 🙂
It has been an adjustment, but it’s definitely one for the better. I’m so thankful that Mom would have FOMO (Fear of Missing Out) as much now. She still has a down day or two, but instead of Lupus kicking her butt, she’s showing it who’s the real boss.
Behind today…not feeling well.
Hi, this is David, Jerry’s husband. She has asked me to put this post together to talk about how her weight loss journey has impacted the people in her life. Well, I have definitely been impacted, so I think I can offer up some observations.
There have been two major effects that immediately come to mind. First, physically, Jerry has SO MUCH MORE energy than she did before! In the past year and a half since her surgery, it’s almost like I have a brand new wife, and a brand new life with her. Before, most weekends were spent with Jerry resting, recovering from the efforts of her work week. More often than not, if we had plans on the weekend, we wound up either canceling, or I would just go alone. I hated it, but I also knew that the only way she would be able to get through the upcoming week was if she had the downtime she needed over the weekend. I know she hated it just as much as I did, but she really didn’t have much of a choice.
Now, she attacks her weekends with a vengeance! The need to “be productive” is deeply ingrained in Jerry, from her German mother, and so these days, things get done. Often times now, *I* am the one that needs a rest. Our children and I both laugh now about how much effort it requires to keep up with mom. After spending so many years on the couch, Jerry is making up for lost time, and I am loving the change.
I will admit, it can be exhausting sometimes, and it did take some time to adjust. When she was heavier, and dealing with the extremes of her Lupus, I gladly assumed a lot of the housework – laundry, dishes, shopping, etc. After her surgery, she started to taking on more and more of the household chores. I felt guilty the first few times she took on the laundry – I was so used to trying to maximize her ability to rest, it was hard to watch her dive in. But, over the months, we have gradually figured out a really good balance between the two of us. She does the dishes, and I put them away. She cooks, and I shop. Neither one of us feels like we are doing too much, and neither one of us worries about the other one doing too much. We really are in a good place, and both so much happier now. 🙂
The second major impact Jerry’s surgery had was more of an emotional one. When she was at her heaviest, and dealing with the worst of her Lupus symptoms, the phrase that often echoed in my head was “10 to 15 years”. That is the estimated life expectancy of someone with severe Lupus. And I couldn’t imaging only having 10 to 15 years more with the person that has made me happier than I had ever been. And so I deliberately focused on savoring and enjoying every moment I had with her. Knowing that, in all likelihood, her disease would steal her from me far too soon, made every moment I spent with her all the more important.
But now, with the loss of so much weight, Jerry’s symptoms are far less intense. She is still affected, and always will be, but not nearly to the level she was before. And now that she has the energy to exercise, and improve her health even more, I am hopeful for a much longer life with her. Make no mistake, I will never have enough time with her, but now I at least look forward to more. And I still savor every moment.
I hope I have provided at least a couple of ways that Jerry’s weight loss has impacted me, and us. In summary, I can say, it was one of the best decisions she could have made, and I will be forever grateful that she did.
With upwards of 4,000,000 Americans suffering from Sjögren’s, it is one of the most prevalent but less known autoimmune disorders. This is because Sjögren’s is not a “cookie-cutter” disease, often being overlooked or misdiagnosed since symptoms can manifest in various ways and affect every patient differently.
I have had Sjogren’s for about 7 years (tested positive). My main compliant is that my eyes are so dry that I have to have eye drops and antibiotic cream on my eyes daily. Oh, and the fatigue. I have most of the symptoms listed, but they are moderate in levels. They are more apparent in my times of major stress. But most have been manageable especially since I have had weight loss surgery. Just being able to move more has helped my overall physical symptoms.
So…thank you for reading…and I hope I have brought a small amount of awareness to Sjögren’s today.
Last week I saw my Rheumatologist, and we decided to take me off of the Methotrexate shots. I had been experiencing too many of the side affects, and really felt the need to get off it.
Really won’t see the benefit until a couple more weeks go by, but excited that my immune system can recover. I would really like to see how my body is without a lot of immune suppressing drugs. One day.
I take two shots weekly on Sunday evenings for my Lupus.
This weekend has been bad for me with my Lupus, bones are aching and fatigue is heavy. Doing too much lately and my body said rest.
I don’t like it but it is something I still deal with. Seeing my Rheumatologist this morning hoping to stop taking one if these shots. I have really like getting off of most of my medicines with my weight loss. I really, really don’t like giving myself shots.
“No is still a great word. When need be, let’s have the guts to say it: to someone pushy, to someone manipulative and to someone in the mirror. When we need to say no, let’s learn to say it right then instead of putting if off for days and dreading it like the plague. Get it over with.” – Beth Moore
Saying no in the mirror today. Mind wants to go and do, and body is not up for it. So, no is okay today. It should be everyday when we need to say it. Why don’t we allow ourselves a break?
Slowing down this weekend. Enough is okay.
Love and blessings.