Today was a day where I could only do the bare minimum. The bare minimum is okay. Just being okay is sometimes the best I can do.
Oh, I don’t like it but I don’t like it because I’ve always worried about the judgement of other people. Well, here’s the truth; even if I try to hide it, I’m not myself and those who really know me see through it. Some will stay and some will go. I need to be okay will that. My autoimmune diseases and chronic illnesses will always be a part of me. I’m in acceptance mode with that. Some friends will get on board. Some won’t. I’ve officially passed that choice and/or burden onto them.
I’m okay with sometimes just being okay. If all I do is get up, brush my teeth, and put on leggings and a top, that’s okay. There is freedom in letting go of caring about the judgement of others. No pretending anymore. No pressure. It’s being okay with just being okay.
This is the life I was given and I’m doing the best I can with what I have. And that’s okay.
Writing is my passion. It always has been. It doesn’t matter what you ask me to write about, I’ll love it. College was an oasis of wonder for me. I loved writing essays. I loved to challenge the status quo or argue a point or share what I thought on a topic. And when they dropped creative writing in my lap, I practically melted on my keyboard. But wait. Then later on people started paying me *in real cash money to write. I was published in several publications and even in a couple of books. When an agent came to me (yes-she came to me) asking for a query and signed me with her agency? I died, went to heaven, made St. Peter slap me upside the head and came back to do more writing. I love it that much.
And then came the chronic daily headaches. And the migraines. And the bone crushing fatigue. Those are not good conditions for writing. In fact, it’s like I’m in prison with these health issues when it comes to my beloved passion and that isn’t fair. In fact it sucks. Someone recommended I try Dragon or another voice to text app but that isn’t the same. It’s not the fingers flying over the keyboard. Or the rush you get when you almost feel like you are no longer in the driver’s seat because the words are flowing so fast the story has taken over and your hands are merely the method to bring the story to life. Now, when I write for a long time, I pay the price in pain. My head. My eyes. My joints. I’m being literal here. I literally pay a physical price to write every word on this blog.
Oh, but what a beautiful price it is. I love writing so much. I love every thing about it. It is truly my passion. So when you see a blog post from me, know that is truly a labor of love. I wrote it from the prison my body locked me in and I refuse to let it hold me back. Words. My words. My stories. I won’t stop. This is my passion. My love. The one thing I know will always be soothe me even when it hurts me.
(Warning: This just may be the most boring post you’ll ever read from me. I just wanted to educate y’all before we move forward.)
One of the things that is going to change around here is the fact that my “babies” are grown up. I have a 20-something, a just about to be 20, and a high schooler. So, my days as a momblogger are fading. Their stories are theirs to tell. I’ll still share some of our family fun because, well, we aren’t the normal family. We are loud, sarcastic, (at times) inappropriate, and we have one helluva good time. There is too much fun to not share those family times.
However, when it comes to my stories, you’re going to hear more about my medical conditions. It’s not that I want to whine or gain symathy. I have a dog for that. You should just understand that every day, all day, every hour, every minute, I am effected by one or more of my chronic illnesses or syndromes or nasty little devils that make my life a living hell most days.
I won’t list everything I have going on because that will be the most boring post EVER. But the big three – or as I like to call them – the mighty triad that wants to kill me or least make me suffer. I really need a meaner sounding name for them, come to think of it.
Anyway, the chronic issues I am dealing with are:
Chronic daily headaches & chronic migraines (and their good friend cluster headaches). And yes that does mean every singleday I have a headache at or above a pain level of 5 or above. That is a good day. I also have a minimum of 12 migraines a month. A good month. Those are just examples. It can be worse. It is rarely better unless I have been in the hospital and they have medicated it down to a zero pain level. That usually takes about 9 days of nonstop IVs.
Fibrmyalgia is along for the ride. I don’t even know how to explain all of what fybromyalgia does. But I can share what I go through with this.
Chronic muscle pain or spasms (like having the flu all the time, 24/7)
Severe fatigue (Again like the flu. You need a nap after a shower.)
Insomia (which is a bitch seeing as you are so fatigued but sleep is not going to happen)
Your body feels all kinds of stiff when you first wake up. (Feel like I’m Rice Krispies with the snap, crackle, and pops going on.)
The awful “fibro fog” where I have retention of Dory from finding Nemo (Feel free to call me Dory. Seriously, my retention is horrible a lot of the time.)
Migraines (YIPPEE) and tension headaches. (YAY)
Feeling anxious (Me? Yep!) or depressed (Duh)
Tingling in the face, arms, hands, legs, or feet (Too often to count. Like the pins & needles when your foot goes to sleep)
Exercise kicks my ass (even more than before)
(And the one no one talks about) GUILT Seeing as it is an invisible illness, I am always apologizing or feeling guilty if I have to nap or not go out with the family. Guilt sucks.
Now Lupus is the one I know the least about because it scares me the most. I realize that is not the wisest route to go, but that’s me. I am very aware of the chronic headaches, migraines, and cluster headaches and I do know my fybromyalgia but when it comes to Lupus I can only tell you a few things.
With Lupus, I know my ANA is very high. (Meaning the my good cells are really awesome at kicking my own body’s butt.) What I do know that has shown up:
Fatigue (Like with fibro, it is worse than the flu)
Fever with no explanation (I wake up every day with one and have one many nights)
The butterfly rash on my face (So not a big fan of this)
Hair loss (It’s bad enough that I see grey popping in. I don’t need to lose what I have.)
Swollen joints (I mean it is seriously hard to put a bra on, people.)
Dry mouth & eyes (I literally never leave home without a water bottle and eye drops.)
Kidney issues (This is also a side effect of all of my meds. Need the meds, need the kidneys.)
Gastro issues- (Like reflux so bad it is burning my vocal cords and changing my voice)
So, there you have it. That is a day in the life of Chronic Jenn. Anyone want to switch? Nah! There is no one I would ever wish this upon. I take it upon myself before I’d ever wish it on someone else. I’ve got this. I’m kind of a badass now.
I don’t know how to say this so I am going to say this as if I am just talking to a group of my friends. Okay?
So many of you have followed me through this journey of trying to discover why I have been suffering for years with chronic daily (as in every single damn day of my life) headaches and migraines. Back in April of 2014, I was hospitalized for 9 days while they ran tests and tried to get the pain under control. I started to find relief around day six. (Wouldn’t you know it?)
While I was in the hospital they ran many, many tests. Some of those test results came back not so very encouraging. My focus was on finding relief from my headache pain and that was basically all I cared about. I finally found an amazing new neurologist with a new game plan to kick these headaches back to hell where they came from. Long story short, my new neuro was going over my test results and called me to go over other, non-headache realated symptoms. She then sent me straight to my former rheumatologist who them put 2 +2+ 6 +7 together and came up with Lupus.
A couple of weeks ago I was diagnosed with Lupus.
I hate that sentence. I really, really hate that sentence.
A couple of weeks ago I was diagnosed with Lupus.
I can’t even cry about it. I want to. I want to rage. I want to break things and scream. And cry. But the urge is stronger to just lie on the floor and just be. Just lie there until the whole damn world makes sense again. Or I can make sense of it. I don’t do any of that. What does that even mean? I’m pretty sure it means I’m in massive denial. Or I’ve finally snapped.
Right now we don’t know what the connection is between the daily headaches/migraines and the lupus. I’m sure we’ll be digging that up and trying to connect the dots now. All I really know is that I am in pain. I hurt. I mean, I really hurt. Every day. And, yeah, I’ll say it: This sucks. I’ve also heard that lupus doesn’t travel alone but likes to bring along other autoimmune friends. I know they see inflamation in my thyroid, so let’s hope that is the only friend invited to this party.
I don’t know what else to say.
Apparently (according to the doctor and even if I am in denial) I have Lupus.
“Sometimes your heart needs more time to accept what your mind already knows.”
So many of you have been so wonderfully kind with your emails, texts, calls, etc checking up on me and my headaches. I haven’t really known how to write about it. I mean, I have friends who are dealing with things that are so much worse than what I am dealing with and they are my heroes. They are fighting for their lives. I’m just fighting for normalcy and answers. Ironically, every answer I get sends me to a new “ologist” with new questions. And it all started with headaches.
It actually took me nearly two years to get an official diagnosis of “chronic daily headaches” and “chronic migraines” on my medical records. (Why, yes, I am a little bitter towards the careless asshat GP doctor who shall not be named who I was going to for nearly 20 years who couldn’t take the time, effort, or have the ability to figure this out. But then again, he probably doesn’t know his ass from his elbow so that might have held up the diagnosis.)
I’ll keep it brief because let’s face it, no one wants to read the medical woes of someone else unless it’s gory (it’s not) or scandalous (it’s not) or it is worthy of good gossip (it’s not-though some have asked in hopes it is).
So here’s the confusing low-down. My internist ran a lot of tests on me. Some of the blood work came back indicating a need for me to go see a rheumatologist. (Still no headache answers but attempting new meds to help.) Now armed with new meds and the rheumatologist, we did many, many blood tests. I asked if she was checking to see if I had an autoimmune disease. She said with my history and previous blood work, it wasn’t an “if” it was more like a “which one” situation. From those we discover autoimmune issues with my blood and my thyroid. (The thyroid has me heading off to an endocrinologist.) Because that is so normal and boring, the complete Lupus panel came back with super high inflammation numbers that would indicate Lupus but without the inflammation and results you’d see in other organs that are present in someone with Lupus. (Not normal.) So we are just in wait and watch. (It is sort of like receiving a box in the mail stamped all over with “Fragile: Broken Glass Inside” and you open it and it is full of unbroken coffee cups. It makes no sense. But, you are careful with those cups and check them often for cracks and chips.) Was the mistake in the results? A freaky blood thing? No idea. One possibility that is being tossed around with all of this crap is that Fibromyalgia is at work and messing everything up. A lot of those benchmarks are showing up. (How rude!)
And still? No headache answers.
However, I have FINALLY found an amazing neurologist. In fact, she is one of the top neurologists in the state at one of the top neuro clinics in the country. I hit the motherlode with this one. Now, instead of another doctor throwing another medication at me, I have a doctor who listens to me and seems to connect the dots. In fact, I now have a team of specialists working with me. It feels amazing to be working with traditional medicine, biofeedback, physical therapy and accupuncture all together with one person leading them. I knew from the reputation that I was going to one of the top places in the country but to experience the level of care has been a huge relief.
My first appointment was nearly 3 hours long. A lot of talking and background information. I also received some injections. Eighteen to be exact. Yep, I had the big fun of 18 lidocaine injections in my neck, temple area, and forehead. And, yes, it hurt like you’d think it would. But it did give me relief. Next up we’ll probably start botox. It just depends on the frequency and severity of my headaches and migraines as to what path we take next.
We still don’t have answers. I still am in a lot of pain but we are all working together to figure it out. I will admit it gets frustrating trying to juggle all of the specialists dealing with all of the crap but my neurologist has been amazing in taking charge of all of them. Even the ones that usually take point, are listening to her.
I’ll be honest. It gets frustrating. I’ve had some recent changes that have thrown us a curve ball so we are staying on top of it.
It sounds like a crazy cruise through WebMD. I wish. But? This is what I am dealing with right now. That is one of the reasons I have kind of shied away from the blog. I shared this with someone (though I should’ve known better) and already received a snarky remark about it. This is not what I want. This is not where I want to be. I don’t like sharing my health issues. I have lost some online opportunities because someone in charge thought I couldn’t handle it. (I know what I can and cannot do and I *will* tell you. Trust me. I know the price I will pay if I don’t and I do not want that.) I’ve had snarky comments. I’ve had people tell me that if any one person had that much going on they would be nothing more than a curled up, weeping, ball of crazy– that it was impossible. (Hello! Have you met me?) I keep to myself for the most part. In fact, I have even pulled away from those who love me because it’s too hard to be “that person” who has issues. So, it is so much easier to bury the pain and issues. Well, not as much easier as I feel like less of a burden. And at this point, that’s the best I can to for those around me until I can get all of this insanity under control.
PS- Sorry I didn’t keep it brief. If you made it this far, thanks for hanging in there with me.
PPS- No this will not become a blog about health.
PPPS- Do you have any chocolate? I could really use some chocolate. Thanks!
