Hello again, dear friends. When I made my Bloggyville comeback appearance last week, I tried to be upbeat and lighthearted. It’s never easy leaving a place you love for a while then returning later only to be greeted by a lot of new faces who look right through you because you’re a stranger and not seeing some of the familiar old faces you used to love. The same is true of taking a lengthy break from the blog as I did.
The fact is, while I often see things that either make me think they will be the subject of my next short story or the subject of my next blog post, the life I was living didn’t allow my body to go much beyond just having the thought to do such tasks. It’s been quite a roller-coaster ride since I was diagnosed with Lupus in 2016, not to mention the couple of years before that with the host of medical problems I was experiencing and getting no answers from the numerous doctors I saw.
I thought that once I was diagnosed and finally had a name for what ailed me, things would start getting better. That was not the case. Keep in mind that I’m also dealing with Gastroparesis caused by my Lupus, so that means I still vomit more days than not, and I’m very limited in what I get to eat and keep. My family has started saying, “Are you going to eat that meal or just rent it for a while?” Gastroparesis typically occurs in people with diabetes, and what happens is the food they eat does not digest past the stomach, and since it doesn’t move along as it’s supposed to, it can cause their blood sugar to spike even hours after having eaten their last meal. In my case, my gut gets so inflamed, the food just sits there until it hurts so bad I have to get rid of it in the only way I know how. Which is a visit to hug the porcelain god.
I took steroids daily for more than 2 years to try to get everything under control, not to mention chemo for 4 months. Because of all the poison I was eating in the form of “medicine,” my skin thinned to the point I can see my veins, and just scratching an itch can make me bleed or have a “hickey” that lasts for weeks. The slightest bump into something can make me get a large, ugly, violet bruise. All the meds made me lose even more of my already-falling-out hair along with other unpleasant side-effects.
But my body was still in such excruciating pain, I saw no quality of life.
And then my rheumatologist announced she was leaving her practice to move to another city. Fast forward a few months until I got in to see the new rheumatologist who took her place. The new doctor’s husband is diabetic and has Gastroparesis. What this meant for me is that (even though this G.I. affliction was out of her scope of treatment) I finally had a doctor who actually understood at least part of what ailed me.
But worse than tossing my cookies (oh, how I wish I could really have cookies!) 5 or 6 times a week, I just hurt! Everywhere! I typically have a pretty high pain tolerance, but this was too much to bear. I mean, it was like this (and this is factual… not embellished for comic relief): My 10-pound cat would try to sit on my lap, and I’d scream in agony because it was as if my femurs were being broken in half. I’d knock on my son’s door to call him to dinner and I’d recoil because it felt as if I’d dislocated every knuckle. I’d roll over in my sleep and wake up crying out because it was as if my ribs were cracked. I’d sit on a kitchen chair and grimace because it felt as if my spine and my tailbone had been fractured. In reality, my problem was this: MY SKELETON HURT! Every. Single. Bone. I had no better way to describe it.
My new rheumatologist, because she understood better than most about Gastroparesis, realized that I was losing nutrients during my frequent time on my knees, and as it turned out, my Vitamin D was acutely deficient. (Your levels are supposed to be between 30 and 100 and are optimal between 40 and 80. Mine was 9!) And when your Vitamin D is low, you don’t absorb the calcium you also need to help keep your bones healthy and strong. Turns out that the steroids and chemo I took are known to deplete Vitamin D, the anti-malarial I still take daily to preserve my organs is known to deplete Vitamin D, and my unwilling pastime of barfiness also depletes the Vitamin D. Additionally, I haven’t eaten any of the foods rich in Vitamin D (milk, fish, eggs) in more than a year because they make me puke. And because of the Lupus, I can’t get out in the sun which is another source of Vitamin D.
(Side note: when I had the iron and B-12 anemia, that caused pain and total exhaustion, but that pain was nothing compared to this.)
So, I was put on a prescription level of D3… If you take an over-the-counter supplement, you will either take 7,000 or 14,000 IU’s in a week’s time. I was prescribed 200,000 IU’s a week for the first four months, and now take 100,000 IU’s a week for maintenance. And I finally feel so much better! Oh, I do still get the aches and pains from Lupus, but those are nothing compared to the deep bone pain in every bone from the low vitamin supply.
I’m also still dealing with the puking, but at least now when I lose my meal, I don’t feel as if my kneecaps are being bombarded with nun chucks as I kneel to do so. So, half of my battle is won, and I can’t tell you what a relief it is not to live with that kind or that level of pain in literally every bone in my body.
While my experience has soured me on the current state of America’s healthcare system and the bureaucratic “rules” that go along with it (because no other doctor I saw went out of their way to even recommend a simple, inexpensive blood test that literally could have saved me from months of torture), it also woke me to the idea that there must be an inordinate number of people in third-world countries (and likely even closer to home) who don’t get enough to eat or at least quality nutrition, and they must live as I did every day – with their skeletons hurting. And that thought hurts my heart.
Let’s chat: Have you ever experienced a broken or fractured bone? Have you ever experienced a severe vitamin deficiency? Did you ever realize that a mere missing vitamin could cause such severe pain? When you are diagnosed with something out of the ordinary, do your thoughts ever turn to how someone else in the world might be dealing with a similar condition but for a different reason?
#LupusAwareness #GastroparesisAwareness
So the Eastern “cure” for this condition is this magic pill called Betaine Hydrochloride with Pepsin, which is basically artificial stomach acid coupled with a digestive enzyme (the Pepsin). A person should start off taking one with each meal. If, after the meal, your gut burns like hell, then you don’t have that condition, and you should not take any more pills. But in my case, I was to then work up to increasing the pills by one per meal each week until I’m digesting well. I’m now up to eight pills per meal. But even though that’s a lot of pills (and I HATE swallowing pills!), I’m so happy to not be hugging the toilet every night. I still have to puke roughly two or three times a month, but being as I was at that much per day, I’m not complaining in the least. (And the few times a month this has happened lately, it’s been when I’ve been at the end of my rope with stress.) Because I’m at least for the most part able to eat and digest food again, my B12 and iron deficiency anemia has gone away, my color is back, my hair isn’t falling out like it was, my vision has improved, and I’m not nearly as tired as I was. I still don’t feel one hundred percent yet, and there are still a ton of foods I still have to avoid or else I swell, but I feel incredible compared to how I felt earlier this year when I was at death’s door.
Rachel Carrera, Novelist 