Yesterday I had another Synvisc injection in my left knee. There's still some tenderness and weakness in both knees, and my knee caps still stiffen or lock up if I don't take frequent breaks in my physical activity, but it feels safe to say the treatments and therapies are truly helping. I am in less pain and I am getting a bit stronger. I am slowly feeling more capable and optimistic about simple tasks that have been so hard, like running errands and being on my feet in public for maybe an hour at a time. Longer if I can take more breaks.
The PRP (platelet-rich plasma) in my right knee and the Synvisc injections in my left knee seem to be doing what they should be doing, even if my progress is slow. My plan is to continue training at the YMCA and get Synvisc injections again in another 6 months. I will hopefully hold off on more PRP since that's so much more expensive, and it's become a burden with scar tissue on my veins.
In all of this experience with my knee injuries and arthritis, I've had many doctors (not lipedema experts, mostly knee surgeons) tell me that weight loss will not happen from activity. Instead, they insist it's all about the food. Unfortunately, they'll often go on to recommend eating patterns that might sound healthy, but in reality, cause more lipedema/lipo-lymphedema flares for me.
I have learned (perhaps the hard way) that movement TRULY matters. My lipedema progresses much more, and my health declines more swiftly whenever I am mostly housebound. We were mostly housebound in Tennessee for a few years before Sophie started school when I didn't have a car or driver's license. It was incredibly hard psychologically and physically. The same thing with my knees and pneumonia keeping me at home. I have found it's imperative that I can move and get out of our apartment often—otherwise my weight stagnates or increases.
Careful food planning is also vital, but I have never found it to be enough. It has to go along with lots of physical activity for me. Even then, progress isn't dramatic like one might hope.
At the moment, I am pleased to see that all of this hard work is finally paying off. I am beginning to feel better and lose some of the weight I gained with my double-knee pain and pneumonia. Two weeks ago, I was 15 pounds heavier. Things are finally moving again.
The downside to all of this is how much time and money it takes for me to make any progress. Keeping up with all of my treatments is as consuming as having a demanding full-time job. Except rather than receiving wages, I pay to participate. The payment I receive is in the improvements I am slowly making. It costs money to go to the Y, to work with the trainer, to eat well for my lipedema, to take all of my medications and supplements as needed, to attend all of my doctor and therapy appointments, etc.
I feel a deep amount of guilt about that, but I don't know how to fix it, either. Our society and our healthcare system are setup so backwards! In the grand scheme of things, I still think the very best thing I can do is focus on my health, which improves our quality of life.
As I start making progress here, it becomes a bit easier to write about what's working, and perhaps that can inspire others to tackle their own challenges, too, rather than giving up or thinking "It's too late."
It's never too late to try.
I am having to start over virtually everything in my life and rebuild it all after 40—it's definitely like relearning how to walk. It's very awkward and messy. I'm wobbly on my feet.
Yet it's important.
My lipedema went untreated for thirty years. I think that's the big picture to hang onto. It feels so awful and embarrassing to have been struggling through all of my treatments for a few years now, but that's a genuine effect of the medical ignorance that got me so far advanced into my disease.
I am hopeful, then, to be able to get back on my feet by sharing my lipedema journey, which is inevitably becoming my mobility and fitness journey, too. Along with unpacking all sorts of pain, shame, and trauma.
Both fitness and weight loss are very difficult subjects for most of us in the lipedema community. It gets more and more challenging for advanced patients like me.
Diet and exercise really don't work for us the way most people, and even most doctors believe that it should. These things are very personal, too. As lipedema patients, we must find what works for us to help us feel our best and limit our flare-ups, pain, and swelling. Also, we have to avoid getting back into disordered eating patterns.
It's a lot to manage at once, and we have to focus on getting into the best shape we can, for us. We can't compare ourselves to others.
Currently, I am having some issues with my left elbow again, so I am trying to avoid too much swype-typing on my phone, which exacerbates the problem. Which also makes writing harder since it's my dominant arm. We don't have a computer and keyboard, so it might be time to at least look into keyboard attachments for tablets so I can work from home with less stress on my body, as I get back to more writing.
I've also found that I cannot wear my glasses anymore to type when my phone is in my hand. Actually, I now have to take them off if I want to read anything close up. I've read that's a common issue for nearsighted folks as we age, but that's been a really weird adjustment for me.
All of this... above has contributed to my very slow trickle of writing since the fall and my monumental health decline. It is hard for me to talk about just how much my health has suffered with my immobility, or even how challenging it's been to get a little bit better.
Ever since my left knee began having problems about 9 or 10 months ago, making it a bilateral issue, my whole quality of life went downhill. My confidence was also fully shattered between September and December, with everything that went so wrong.
I wish rebuilding all of these things was a quicker endeavor, but I know that's not realistic. So I am taking it all one step at a time. On the one hand, I feel that's very naive. After all, how can I keep going without working like I used to? The bills keep coming. On the other hand, I AM working. I'm working constantly in a costly field that happens to not pay the bills, by focusing on repairing my health and mobility.
So, that's where I am at. It is a precariously hopeful place.
Tomorrow, Sophie is off of school for Good Friday. Easter weekend is an awkward time for me. I have a lot of childhood baggage and even lipedema baggage with the holiday. Obviously, many people love it and I am happy for you if it's a good time. It's simply a bit weird for me and my experiences with spiritual abuse and the barriers lipedema brought into my life.
This year, I couldn't make up an Easter basket for Sophie, so I was honest with her like I was about her birthday—that I didn't know what I could afford to do when money is so much tighter right now. She said she's not disappointed about not having an Easter basket this year, and that she's always thought it was a weird holiday anyway. She also doesn't get the egg‐bunny-Jesus connection so many people love down here.
So, I lucked out. We're not going to do much in the way of Easter. Just try to enjoy the long spring weekend. Some of you might recall that Sophia decided to go vegan in January, which is actually good for my lipedema/lipo-lymphedema because animal products can produce excess lymph fluid and inflammation for us. She's still going strong on that, which is awesome, meaning I'm not the only vegan in the household. Sophie’s also getting into fitness, and her teacher says that seems to have been a real confidence booster for her at school—she's now trying new things, like the monkey bars, and that's also great for Sophie’s hypotonia (she was born with low muscle tone, and it's actually a neurological condition).
That's what's going on with us. Focusing on health, mobility, and fitness. Trying to get myself back on my feet, financially and physically. Getting ready for Sophie’s 10th birthday on April 9, and her birthday party on April 21. Next week, we also have to go to a court hearing for her last name change (she wants my last name). On April 22, I see Dr. Amron again for a virtual appointment.
Sophie has a big dream for us to move to a more Blue Zone friendly place. I admit, I would like to be closer to lipedema specialists and simply live in a less humid, more walkable place. She also dreams about going back to Disneyland after I've regained more mobility. She especially wants to experience Christmas at Disney someday.
I think these are good dreams for a 10 year old in her situation. She knows I'm working on my health to benefit our future and get back to doing the writing I am called to do. It's hard for her to miss out on much of the family fun her peers talk about, but she's also very understanding about my disease.
Thank you so much to everyone who has keep cheering us on through this whole process. I hope to make something better and better with all of this mess.