This is an email I received from a very dear friend of mine.
I hope your body leaves you alone. I don’t know how you do it, but you’re a strong woman dealing with your health issues. maybe we don’t see the behind the scenes feeling, but you seem to handle everything well, rolling with the punches, kicking and screaming. hang in there!
And she’s right.
You wouldn’t know it from my FaceBook Status Updates.
And you wouldn’t know it from my recent blog posts.
And you certainly wouldn’t know it from hanging out with me.
But I’ve been very high anxiety.
And on the verge of having a complete meltdown.
Actually, I did have a complete meltdown.
And it wasn’t pretty, people.
It was the kind of breakdown where I got completely drunk, yelled at my friends, and then I sobbed hysterically and uncontrollably for hours, while hyperventilating, in my mother’s arms. I screamed with every fiber of my being, from the depths of my gut, and then some. Leaving me utterly depleted, complete with swollen puffy eyes.
That kind of breakdown.
And here’s why…
It’s no secret that I have Crohn’s Disease and Severe Food Allergies. And it’s no secret that everything in my life changed after I was diagnosed. I had to give up my job and I had to give up my house. And even though that totally sucked, I knew I was lucky enough to have a loving family to come live with.
Eventually, I came to terms with those illnesses. And I learned how to make the best out of bad situations. And miraculously, some of my health issues started to improve. I wasn’t getting as sick, as often, and a lot of my Crohn’s symptoms began to subside. In fact, I haven’t had a Crohn’s episode in over a year.
Sadly, my food allergies have been progressively getting worse.
And let’s not forget that fateful day when I almost died from eating a salad. Like for real. After that experience my Immunologist/Allergy Specialist sent me for some tests. And that’s when we discovered that I am allergic to everything on this list.
Obviously, I have to be very careful about what I eat. I have to read all of the labels on all of the packaging. And I don’t eat out in restaurants. I always carry an Epi-Pen. And I always take Benadryl as an “Appetizer” before any meal. But sometimes even that doesn’t help. And I still end up in the hospital. It’s life threatening, yes. But mostly, it’s very annoying.
I’ve been diagnosed with some new shit. Like new shit that I can’t even spell or pronounce properly.
And I’m finding it rather difficult to deal with.
Over the past four months, weird things have been happening with my body. Like, waking up in the morning with really puffy hands and feet. And it can take several hours for the swelling to go down.
I’ve also been having difficulty walking up and down the stairs in my house because of excruciating knee pain. I’m limping around like the television character House, sans the cane and sans the vicodin. Just the other day, while driving my car, the pain in my right knee was so severe my foot went completely numb. It was as though my entire leg went dead. And it scared the crap out of me.
And also, I’ve been getting really sick, really often, again. Like with strep throat, and bronchitis, and walking pneumonia. Apparently, I can’t just get a regular cold. Nope. That would be way too easy.
And, top of everything else?
The thing that’s been the most troubling is that I’m having weirdo Allergic Reactions even when I haven’t eaten anything.
For instance, one morning before I even drank a cup of coffee, half of my upper lip looked as though I had a collagen injection, gone awry.
[*I have no idea why my finger looks like that of an alien.]
And then I had another really bad Allergic Reaction, after eating a couple of blueberries.
Where I walked around looking like I had been punched in the mouth.
For FIVE days.
in. a. row.
And that’s when my Immunologist/Allergy Specialist decided I needed to have more tests. He was fully expecting my results to come back negative.
So I went to Lab-Corp to have my blood work taken.
Now anyone who knows me, knows that I am a fainter, and a passer-outer, a crier, and terrified of needles. Luckily, they know me over there and they carefully placed me in the Children’s Ward.
When my blood test results came back?
Everything showed up positive.
1. I tested positive for ANA. Which is a test that helps screen for autoimmune disorders and is most often used as one of the tests to diagnose systemic lupus erythematosus (SLE). ANA should be followed by additional tests. Therefore, I was referred to a Rheumatologist.
2. I tested positive for Hereditary Angioedema. Which explains some of crazy swelling issues. There is no cure, but luckily, there is no need for any further testing. I just have to live with it.
3. I tested positive for Thyroid Peroxidase. Which means my thyroid levels came back way off the charts. Most people are around a level 45. Mine came back at level 168. As such, I was referred to an Endocrinologist.
Instead of getting myself all worked up, and instead of freaking out, I immediately scheduled appointments for both the Rheumatologist and Endocrinologist. Because hey, maybe they will have some answers. And even better, maybe they will also have the proper treatments and I can get on the road toward better health.
First, I set out to see the Rheumatologist.
He, of course, wanted to run some more tests to find out what’s specifically causing the ANA test to come back positive. Because there are so many different autoimmune diseases, overlapping each other, he needs to be able to rule some things out.
So… I had to go back to Lab-Corp for more blood work.
And they placed me in the Children’s Ward.
Then I went for some X-Rays to check and see if there’s any damage to the bones in my knees.
Now, I don’t mind getting X-Rays. In fact, out of all of these tests, this one is the easiest. I just don’t like medical machinery, in general. It looks so scary.
And, why is it always freezing inside of the hospital?
Not wanting to waste any time, next, I went to see the Endocrinologist.
She, of course, wanted to run some more tests to find out what is specifically causing my thyroid numbers to come back so high. And she explained how my own body inappropriately attacks the thyroid gland as if it was foreign tissue, forcing my pituitary gland into overdrive as well, which, in turn, causes all kinds of other issues.
So, I had to go back to Lab-Corp for more blood work
And they placed me in the Children’s Ward.
[*I really hope I never have to see another needle, for as long as I live.]
I think the worst part of this whole ordeal has been waiting for the results.
Waiting is the worst, people. Because no matter how hard I tried not to I still played the “What If” game inside my head.
But being sick and running around to a million different doctors appointments has NOT been ALL bad.
There have been some positive things too.
Just when I thought I was going to lose my mind, a fellow blogger and very special friend, surprised me, with an amazing present. It’s a whole book of dragonfly photos taken by the VERY talented Cheryl Duford. And it’s super personal, and super thoughtful, and SOFA KING awesome. It’s even purple!
And I was soooooooooooooooooooooooo touched that I had tears in my eyes.
But later that very same day, I received some disturbing news.
My Endocrinologist determined that I have yet another autoimmune disease. And it’s called Hashimoto Thyroiditis. And quite frankly, I think that sounds more like a Japanese Anime Cartoon than anything else.
I have to admit my heart sank a little bit after hearing that news. I didn’t even want to Google it to find out any more information because that would have made it too “real” for me.
And I wasn’t 100% ready to accept it.
Until my darling friend, and fellow blogger, Chris Dean, said this:
“Dear Meleah, Your crack about your new autoimmune disease sounding like an anime? I could NOT help myself! You’ve got your awesome Crohn’s gear and you’ve got an Epi-Pen in your other hand. Oh! And pink fuzzy slippers of course. *grin* Please…don’t hate me!”
And then she drew ME as a Japanese Anime Cartoon!
[*The toilet paper on my belt is definitely my favorite part.]
And I never laughed sofa king hard in all my life.
Something truly funny had come out of all of this.
And that’s when I realized, what I may lack in good health, I certainly make up for with wonderful friends. I am truly blessed and ever so grateful. Seriously. I wouldn’t have been able to deal with any of this, and I would never be this strong, without the love and support I get from my family and friends.
But then, things took another turn in the wrong direction.
When I got another phone call.
This time it was from the Rheumatologist.
He explained how he reran my blood work and the ANA test still shows a positive result. And also, my blood work tested positive for Sjögren’s Syndrome. [THE FUCK? ] He stated just because the blood marker is there doesn’t mean I absolutely have it because there are other autoimmune issues that could have given me a false positive, like Lupus, and that I should come back to his office to discuss my diagnoses, in person.
With everything going on, I’ve been limping around acting happy and fine. I’ve had a smile on my face and a strong attitude. But all the while, I’ve been holding in my feelings. And I’ve been stuffing down the stress, and worry, and concerns. I’ve been using all of my escapism tools, but in reality, those tools have only been making matters worse, not better.
And I didn’t even realize I was running away from my feelings, until I drank entirely too much Grey Goose, and everything suddenly hit me at once.
And I totally snapped.
And that’s when I had a complete breakdown.
I sobbed hysterically, and uncontrollably, while hyperventilating, in my mother’s arms.
And I couldn’t stop, for hours.
I can honestly say I haven’t cried that much, or that hard, in years.
But, it was absolutely necessary.
And aside from the headache and crazy puffy eyes, I felt much better, after having such an emotional dump.
I think am slowly coming to terms with my new medical issues.
And I think am slowly figuring out my limitations.
And I totally believe that I will be able to “Find The Funny” in all of this, eventually.
Because let’s face it, life is way too short to dwell on the negatives.
AM I RIGHT?
1. As of October 11th, according to my Endocrinologist, my blood tests confirm the Hashimoto Thyroiditis diagnoses. Which is totally fun to say, especially when you say it with a Japanese accent. But, even though it’s another autoimmune disease, it will be manageable via medications such as Synthroid.
2. As of October 16th, it’s been 100% confirmed by my Rheumatologist that I have Sjögren’s Syndrome, except that I don’t have the normal Sjögren’s symptoms such as dry eyes and dry mouth kind. Nope. Because that would be way too easy to deal with. I have the type of Sjögren’s that is more like LUPUS. Or, SLE [systemic lupus erythematosus] which explains my actual symptoms such as pain and stiffness in the joints with mild swelling, numbness, tingling, and weakness – in my hands and feet, and extreme fatigue. Oh, and we need to be on the look out for any inflammation that may flare up in my lungs, liver, and kidneys, because people with this disease have abnormal proteins in their blood. Which basically means my immune system, which normally functions to protect the body, is reacting against its own tissue. Also, I am at an increased risk for cancer, specifically of the lymph glands [lymphoma].
That’s about it.
If you liked my post, feel free to subscribe to my rss feeds