Okay…so I suppose I owe an update to everyone. I hate sharing private information on social media…or on any public sharing format…but I did leak a bit of info out throughout the year, that I’ve been super sick. And, the more I prayed about it, the more I thought I should share, here, as well. In hopes that maybe this might help someone else out there with similar diseases or experiences!
Suffering Alone
I’ve been super sick since 2002. Sick as in grinding stomach pain. Non stop. You know that feeling when an upset stomach hits, and you am have to get to the bathroom super quick? And you’re hot and cold and a bit white in the face? That’s what I feel like all the time. It began when I was 18 and still continues. It’s not just the bring-you-to-your-knees stomach pain I deal with every day. But also-diarrhea 13-18 times a day. (Gross, I know) And because it’s gross and embarrassing, I have kept it a secret as much as I can-only the people really close to me know about this…because if you’re around me enough, you catch on. So, even though this is incredibly hard for me to talk about, I feel the nudging to share, anyways. Because what if there are more people out there, like me, suffering…but to embarrassed to talk about it? Or to seek help?
Onset
I have been able to manage my problems through strict diets and holistic healthcare. And several dr. Appts and procedures and testing (oh the testing!) along the way. With no answers. Or, physicians who blankly stared at me, leaving me with feelings that I was making all of this agony up. Or- even better- doctors who won’t even make eye contact with me or take me seriously at all. But then-February 2020 my unknown illness seemed to have flared into a whole new level of pain and sickness. Now, compounding what I was already dealing with, I started vomiting nonstop. I couldn’t keep anything down. Not even water. 2 weeks out of this, and I was beginning to get concerned and decided this was not some stomach flu but the kids brought home to me. I was scared. And for the first time in my life-I couldn’t hide my disease away. I couldn’t skirt doctor appointments and treat my symptoms myself. I needed help.
Flares
Lots of chronic diseases “flare” and I’ve also found out it’s super hard to diagnose lots of diseases. For me, this flare I’ve been in for a year, has me throwing up every single thing I eat or drink. Literally. I’ve lost 122 pounds and counting. (The key is to not keep counting down forever, which seems to be the trend) Looking back, it’s almost a blessing I’ve gained so much weight in these last four back to back pregnancies and years of breastfeeding 😬😂. The nausea is stronger than a stomach bug and never stops. I have constant, grinding stomach pain that even keeps my blood pressure permanently elevated. I have rashes. Shakes. Nerve damage. Can’t eat. Blurry vision. No way to control my body temperature. Numb hands and feet. Neuropathy. Malaise. And I could go on. Those of you that are really close to me, have heard the details. Something I will not share here. And with chronic illness, it can be confusing, because sometimes you can’t see it on the outside. Or that I appear to be doing “lots of things”. Well, that’s basically because I am one tough chick. And partly, sometimes, I’ll be blessed with a day, where I feel good. But then, crash that evening.
Diagnosis
I’m still seeing specialists weekly. And also have several procedures and surgeries coming up. I’m still accumulating diagnosises as well. I see a neurologist, oncologist, gastroenterologist, my primary care, hematologist, and an endocrinologist. I also have to go out of town soon, as well.
Here’s what I’ve currently been diagnosed with (insert vulnerability here):
Raynauds Phenomenon
GERD
Autonomic Neuropathy
IBSD
Severe, chronic Gastritis
Severe idiopathic Gastroparesis
All of these are chronic diseases I have to deal with the rest of my life. And they are both diseases AND symptoms. The gastroparesis is the most devastating and is usually caused by damage to the vagus nerve. So the docs think all these diseases are being caused by one bigger autoimmune disease. And that’s why I practically live at the doctors.
Lots chronic Illnesses are both symptoms (of bigger illnesses) and diseases.
But let’s talk about gastroparesis. Have ever heard of it? This disease is devistating. I have about the worse case you can have and it is just wrecking havoc on my body.
Gastroparesis is NOT CURABLE. You can treat it and have surgeries to help alleviate the symptoms. But there’s no cure. And I have about the worst case you can have. What is it? It’s the permanent paralysis of your stomach. My stomach is completely shot. If I eat just a bite of food, it will stay in my stomach for 3 weeks to a month, before gravity drops it, finally, into my intestines. This is because all my muscles and nerve endings don’t communicate with my tummy anymore. So, even if I have a bite of food, I throw it up. I usually can drink a bit of water and I can drink 1 ensure shake a day. That’s it. And that’s my life for the rest of my life. My case is so severe, I can not have raw veggies, meat, hardly anything, ever, again.
Also, it causes more than not being able to eat. It causes the Raynaud’s phenomenon. My hands and feet are blue and cold all the time now. It also causes my autonomic neuropathy. This causes me to have numb hands and feet all the time. I also have uncontrollable shakes and tremors in my hands several times a day…which impacts my art. And the daily stomach ache and nausea! Oh GOD! It’s like having the terrible flu and bubble guts ALL THE TIME. I even get woken up at night from the pain and puking. And a lot of other things. Autonomic neuropathy also makes me sweat a lot, and be ice cold at the same time. And we won’t even talk about how I went from zero meds, to about 20…and that’s just to function a bit!
So because I have zero stomach function anymore…I am at risk for beazors, hair loss, malnutrition, no immune system (at all), difficulty regulating body temperature, bladder inconsistence, and so much more. The disease is progressive and I have a procedure I keep putting off, scheduled, to cut my pyloric sphincter, so that way food can fall into my intestines a bit more easily. But, it’s still not a cure. And I have about a 55% chance to have only SOME relief with the surgery. There’s also other treatments. And talks about J and G tubes for nutrition (a semipermanent nutritional tube that is put in me, to feed my body formula, so I don’t waste away too quickly). Also, if it gets too bad, I may have to have my stomach removed 😩.
Adjusting
So these diseases have me a prisoner to my home, basically. Thank GOD we live in my dream home! I can’t tether far…because I never know when I’m going to be brought to my knees in pain or just start puking (gross, I know). It is absolutely miserable.
I also am still emotional and physically adjusting to everything. Having no appetite ever. Mourning the loss of raw veggies in my diet. Learning how to cook for my large family, without being able to taste it…or feeling jealous or like I’m missing out. Breaking bread together is a long-time human tradition that I really feel like I’m missing out on. And coming to terms with that there’s no cure. At all. Ever. My stomach is dead. Literally.
Gratitude
However, it’s hard to be too down about anything, because God puts these blessings and comforts all around me, every day. An amazing husband and loving family. So much support. The farm. The beauty of nature. Feeling thankful and grateful for the things I do have.
I really wanted to share this today, because for one, I don’t think many people even know about this debilitating disease, and two, I need to just announce it, so everyone knows and I don’t keep having to explain things. Yes, I’m super sick. Like, really really bad. And no, I don’t feel better. I’m learning that this is something I just have to “deal” with for the rest of my life. So if you’re my friend, and feel like I haven’t been around much this past year, that’s why! If you’re wondering why you’re just now hearing about this, it’s because I’m modest and also don’t like putting all my personal business out on social media. I don’t want to be defined by my illness. But I also think, at this point, I should make everyone aware.
Be Kind
And, please take the time to consider everyone else suffering their diseases and challenges. Both with outwardly visible, as well as, invisible chronic diseases. It can feel a bit isolating when people say, “wow! You look great!” (Edit-I LOVE being told I look great! 😂 I’m just saying sometimes things don’t appear as what you may think. Also-I do stay super fit and active on the farm! All my doctors, as well as any health-minded individuals would agree, that exercising and staying active are great pain management, and overall good advice, for anyone dealing with chronic illness) Or, “how sick are you, really? Because you’re able to work on the farm, and you do so much!” This is because I CHOOSE to. I have to live with this. So even on days I can barely get out of the bathroom or bed, I force myself to. I have the option of making that conscious decision. Two choices. I can succumb to my diseases and be a victim. Or I can fight against it and do what I can to still have some sort of quality of life! That decision is mine! This disease has taken a lot from me, but I will fight to still see the beauty all around me.
If you’d like to know more about Gastroparesis, please reach out and I’d love to share with you ALL the information I’ve learned along the way!