But Where Are The Good Days....?

I constantly forget CFIDS symptoms that are legitimate. So I'll have these symptoms, then I'll freak out thinking it's something new, only to find out it's old hat. CFIDS it is. One of those "forgotten" symptoms is an upset stomach. I get it in a very special way. I get agita, all the time. Today I threw up in my mouth three times. That's a normal occurrence for me. Lately I've been having severe nightsweats. Yet another CFIDS symptom that I forget about, until I wake up drenched in what feels like a gallon of sweat. There are so many more symptoms, that majority of which I suffer from.

But this post isn't really supposed to list my CFIDS symptoms. This is more of a "checking in" post, catching any readers up to date on what is going on with me, physically and emotionally. If you care to know the truth in all it's forms, continue to read. If not, check back at my next posting?

On June 26 I had a horrible, sudden onset, muscle spasm and my trapezoids locked up. The only position that I wasn't in pain was tucking my chin to my chest. It was severe and paralyzing. Feeling hopeless and terrified, Kevin called my Physical Therapist, Travis, who gave us some suggestions: stretches & heat, but the muscles wouldn't release. I was in agony. I was sobbing, with bits of calm or just trickling tears, then sobbing more and more. 

So I went in to physical therapy. Travis did manual manipulations and while I was there my pec-minor on my left side started to spasm as well. (Incidentally a pec minor spasm can reproduce some of the same TOS symptoms, soooo awesome.) It was severe enough that the PT students could see my shoulder raising off the table. Travis got that to release but my traps stayed steel-rod-like. He hooked me up to electrical stimulation, which usually I have a high tolerance for, but I didn't that day. I made them set it much lower than normal. Within two minutes my pain got so much worse. The tears came rushing back. Kev went to get them, and at that point Travis said my pain was crossing the line and I needed to go to ER or Urgent Care. He said e-stim is a pain relieving modality and for that to set me off, I need to see a doc to check for fever etc....

I went to the particular urgent care place he recommended and the wait wasn't too long but it was awful because of how I had to curl up and tuck my chin to get pain relied. The doc prescribed me a stronger muscle relaxer. It definitely helped. I'm now only sore like I did a hard work out using those muscles, so I'm definitely getting better. Since then my PT appointments have only been light and gentle, to be careful not to flare anything up again. Since then I have had frequent, more minor spasms of my lats and my traps continue to feel as though I went through a strenuous workout.

I have no answers for what is going on with my back and neck muscles. I also have symptoms of TOS that I shouldn't be having this far post-op (blood pressure affected and other stupid things). There are no answers for that either. I've always been a medical mystery and it seems I always will be one. 

What came out of this was obviously more questions. The biggest of which was "but where are the good days?" I believe I was reassuring Kevin that this was just a freak bad day and I'd be better soon. Then he asked me, "but where are the good days?" In truth, I was reassuring myself as much as him because I didn't know why this was happening either but I wanted to believe what I told him, that it was just a bad day. I want to believe I'm due for so many good days. I wanted to believe it because I ask that same question both internally and out loud all the time. I get sad and scared and angry and I need to know where the fucking good days are hiding. The state of existence in which I live in is full of fear and unknowns. I do have good days (relatively speaking), but the bad days are overwhelming.

Something positive has come from this. It may be temporary, I don't really know. It has only been three weeks since this freak incident. But at least for now, Kevin and I are both consciously focusing on a change of perception. We are choosing to see more of the good. It's our way of creating good days rather than waiting for them to magically happen. Every day has good and bad in it, whether you are 10 different kinds of broken like I am or if you're a "normal" person who commutes to work. Good and bad everywhere. But the overall theme of the day, that's our choice. Believe me, I have enough bad that I cannot control--the last thing I need is to put blinders on and miss the good that is there.

So we are celebrating the small victories, whether it's something fun that I'm able to do or whether it's doing productive things. We keep some structure in my days so I have a routine conducive to my limitations, which helps maximize success. We are making our own happiness. 

It's all perception. Instead of choosing to be bummed when yardwork wipes me out and causes immense pain, we make that a good day. Pain and exhaustiion, good? No, not really. But it's definitely good that I felt enough strength to do some of the yardwork. The alternative is me being too tired/weak to get out of bed and spending the day laid up watching life go by. And the structure helping this is scheduling an evening of rest that night and a lazy day-after. My body being dead after that work is inevitable, but it is a choice whether I celebrate the successful work I did or whether I pout and dwell on the post-exertional malaise. Change of perception, bam! 

So where are my good days? They're somewhere in my mind in between the bad days and the pity parties. They're in beautifying my home with roses, lilies, and butterfly bushes. They're in spending a long weekend with family, even if my sleep schedule confuses everyone a little. They're in a day at the beach with my nieces, even though my body had to be told to suck it up to get out of bed. 

30 Day Chronic Illness Challenge (Days 1-4)

 

This is not going to take 30 days, because some questions will either have already been answered or I just won't feel like answering... It may be less than 30 days because I'll answer multiple in one day & skip some. Or it may take more than 30 days because I'm easily distracted and disabled. So there you have it. But we shall start now.

Day 1: You already know my name is Shanley. You also know the illnesses I have from my post "What's Wrong With Me".

Day 2: The aforementioned post lists all my diagnoses and gives details of life with half the list. There will be a part 2--I promise.

Day 3: Redundant

Day 4: Some are awesome. Some suck. Most guys used to break up with me over it. Then this one guy decided to marry me because of it, so.... lol ;)  I've said this before, there are mainly 3 types of people: 1-those who don't know what to say & pretty much never talk to you because of it, 2-those who try really hard to empathize but end up saying the most insensitive things (coming from a place of good intentions), and finally 3-those mythical, majestic people who say the right things!

You Guys Make My World Less Small

You people in the real world have TGIF. I used to, but now I often forget what day of the week it is. I've also, occasionally, forgotten the month. But I digress. I thought my version of TGIF could be a really uplifting, positive post.
It isn't written by me though. It's written by you.
Sometimes when people reach out to me about this blog, they apologize, more or less, for getting in my business. But please, get in my business. My world is small and everytime someone reaches out, it gets a little bigger.
The messages here are by no means all-inclusive of every FB message, text, or email that I've gotten, and clearly I can't include phone calls (like the 20 minute call from Hawaii yesterday!). Oh, and for once, none of this is about Kevin's awesomeness (even though we can all agree he has been the rockstar of caregivers). It's really all yours. YOU ARE AWESOME TO ME AND FOR ME TOO!!!!
Friends, I want you to know that these messages are a huge part of the reason I have this blog. As I said, my world is very small and isolated lately. Thank god for technology, because I can reach out and connect, and through this my world has become slightly bigger. Every time you tell me I inspire you, I feel more strength to keep fighting. Every time you share a problem that feels similar to mine, I feel less alone. Every time you send me these kind, loving words, you lift me up and you keep me going. You cannot possibly imagine how much every one of these means to me.
And that's a bonus reason I'm doing this post. Because the next time I get really down, I have an easy place to go to find so many blessings and so much love all with a single mouse-click. Re-reading these I wonder, what did I do to deserve you guys?
**Disclaimer: I removed things that gave away identities from the messages, because what you've said to me is personal, and it's not my place to put it out there. I'm just trying to share the wonderful love and kindness you've all bestowed upon me. If I slipped and you feel people reading will guarantee know it's you, message me and I'll go in and edit the post if need be.
So once again, thank you all. Love-love-love, Me.

PS--those of you that say I'm inspiring you through whatever your tough times are, talk to me... I'm home alone all day, so I'm available for those in need of a chat. Seriously. People always think "oh I can't share my problems with a chronically ill person, because my stuff will seem so trivial" but that is NOT true. Being able to talk to someone about "normal" problems, like family issues or dating stuff, make me feel more normal and connected. I will never feel your problems are trivial, everyone's pain and struggle, no matter how big or small, is real and valid. And being there for others lets me feel productive, like I'm contributing to the world. So lean on me. I promise, it will HELP me.

Okay, and on to what you loves have sent me......


"Hey Shanley!

I just read through all of your blog posts (yes, like a creepy stalker) and there are a few things I want to tell you. First off, I want to say I am sorry the surgery did not help as expected. That really sucks, and you are absolutely inspiring for keeping your chin up through all of your struggles. In tandem with that, it's good to know that you're allowing room to be vulnerable- I am a firm believer that allowing yourself to feel vulnerable, sad, and scared really makes you better able to cope with what you are going through. It can be overwhelming at times- feeling like you are literally suffocating in emotions, but taking it one day, one minute, or one second at a time and breathing through it, accepting those feelings- That is testament to your incredible strength. 

I am also really happy that you found a blog as a "mental dump" outlet. I know that when life gets overwhelming it is unbelievably important to get it all out- it is therapeutic and relieves some of the stress. I would like to thank you for sharing your struggles, and triumphs with me (and the internet). It's important that people know and hear about invisible diseases, and I think it's wonderful that you are sharing your personal experiences.

I have struggled with _____, another invisible disease but it is much more well known. I've been thinking about starting a blog detailing some experiences I have had with the hopes of helping others. Reading your blog has been absolutely inspiring, and I'd hope to inspire others as well.

I'm not sure if all of this rambling is actually doing anything, but I was compelled to email you about my feelings on what you've written. So I guess what I want to say is that you are a strong, compassionate, woman who has been dealt a really tough hand, but you have the fire in your heart that gives you the determination to succeed and overcome these shitty obstacles. I can't even begin to tell you how inspiring, and encouraging that is- especially to people like me, who suffer from invisible diseases.

I see on Facebook that you moved - but I googled it and you're only an hour away from me. Please PLEASE know that if you ever need anything, a plush shark, a box of chocolates, some cheer-you-up flowers, a shoulder to cry on, a person to cry with, a helpful ear to air complaints, pains, thoughts to- I'm your girl. If you ever need anything, anything at all, I'm a text or call away.

Love you, keep your beautiful chin up!"

"I am so sorry to hear about all that you are going through... _____ showed me your scar on Instagram and my heart goes out to you, I can't even begin to know all that you are going through but I know that you have made a difference in my daughter's life, not knocking _____, but _____ is constantly saying well it's different because in soccer we were a family,  I hear her repeat that theme over and over again, I hear such admiration in her when she talks about you, not just as a coach but as a person. I am so lucky that she had you for a coach but even more lucky as someone that she looks up to not just for winning  but also a strong, confidant young woman/ I hope you can get the relief that you seek from this pain. Take Good Care of Yourself and Heal...."

"So I started following your blog recently after seeing one of your fb posts... and from what I can tell, life kind of sucks right now, huh? Although your gratitude made me smile. I'm sorry your surgery turned out the way it did, more so I'm kinda pissed. Do I have any right to be pissed for you? Idk, but I am - it just seems like shit. If you get the chance to reply to this, do let me know what actually happened? 

I'm also totally here if you just want to rant and bitch about anything and everything, cuz I think you have every right to at this moment. I also wanted to say that I think Kevin is amazing. I'm in awe of him and you too 😊

I really hope to hear back from you, I've been missing our chats!"

"Hey Shan, I am so enjoying your blog...writing is so therapeutic...but of course my heart aches for you....i wish we lived closer...so sad that you are so ill & lonely...if you would feel comfortable would you please send me your address...would love to drop you a card ...or something homemade & sweet??? Do you have any food restrictions??

Thinking bout you lots...and sending hugs"

"I was thinking of coming over  around 12:30. Is that alright? Do you need anything? Would you like me to pick up something for lunch?"

"Shanley i knew u were sick but had no idea to what extent. I've been reading ur blog and the tears just started flowing. Besides being unnaturally beautiful on the outside lol, ur soul, ur heart shines. Ur an amazing woman and I have an ever deeper admiration of u. I felt a connection with u when I met u for some reason. Shockingly cause I don't like ppl a lot lol. I resonated with ur tough girl attitude. I understand that completely. I just met a guy and I actually like him so naturally I wanna take off running!  I'm trying to be cool about it on the outside and not show him complete crazy.  Idk how to do this dating thing. Ur words have given me some hope for myself, eventually lol. I just want to know what can I do for u?  I wish I drove and could just sit on the couch and nap, talk, whatever with u sometimes. I'm at a loss for words. I can't believe u can't get disability. I just want u to know that I will be here if u need someone to talk to or lean on. I know u have a lot of friends and family an ur husband is AMAZING. But one more won't hurt. Ur a hero in my eyes. I wish u nothing but happiness and less pain. More light and love.  Namaste"

"Keep blogging, it's very powerful and I know you didn't ask for my opinion, but I can't wait to see you to deeper with it.... I know it's been a long journey, but I really hope you start feeling better soon."

"Hi Shanley,

I just read some of your blog and wanted you to know that you are on my mind. I am thinking of you and praying for you. I can't imagine or fully understand what you are going through and I don't always know the best way to put feelings into words, but I am a big fan of quotes, proverbs, and poems. I am hoping that some of these quotes I found can offer you words of encouragement.....

"Let someone love you just the way you are - as flawed as you might be, as unattractive as you sometimes feel, and as unaccomplished as you think you are. To believe that you must hide all the parts of you that are broken, out of fear that someone else is incapable of loving what is less than perfect, is to believe that sunlight is incapable of entering a broken window and illuminating the dark room." ~thethingswesay.com

"An arrow can only be shot by pulling it backward. So when life is dragging you back with difficulties, it means that it's going to launch you into something great. So just focus, and keep aiming." ~unknown

"I'd be unstoppable if not for law enforcement & physics." ~unknown

"Giving up on your goal because of one setback is like slashing your other three tires because you got a flat." ~christinekane.com

"10 years ago we had Steve Jobs, Bob Hope and Johnny Cash. Now we have no Jobs, no Hope, and no Cash." ~unknown (pinterest)

"Tears are prayers too. They travel to God when we can't speak." ~ Psalm 56:8

"The strongest people are not those who show strength in front of us but those who win battles we know nothing about." ~unknown (pinterest)

"I can't promise to fix all your problems but I can promise you won't have to face them all alone." ~unknown (pinterest)

"Never apologize for what you feel. It's like saying sorry for being REAL." ~ILIKETOQUOTE.COM

I hope you smiled at some point. Keep your chin a up and keep writing."

"I just read your blog post. It reminds me so much of my grandparents. They had the strongest love I've ever known and I feel honored to have even been able to be in its presence. I know we haven't kept in touch over the years, but that number right above this message sent December 2007, still works. And I'd encourage you to use it if you ever need an ear to listen or mouth to distract you and perhaps offer advice on something I can't begin to understand, but feel for nonetheless. Keep your chin up, Shanley. We're all rooting for you."

"Hey shan! I got to tell ya- I enjoy reading your blogs- I'm learning about your sickness and I continue to keep you in my prayers! Loved your beachy pics with your hubby- beach pictures are always my favorite! (No make up needed!) I wish you didn't live in _____ bc I sure would love to catch up! Hang in there girl, it doesn't sound easy but with love of your family and hubs I have total confidence your tomboy self will be back! Xxoo"

"And oh em gee shanley we all hope you get bettrr.  This terrible you dont deserve this your are the best person I have ever met ! I know you will have somyhing good coming around the corner soon you deserve It ! :( please get better !!!!!!!!!!!! ♥

......I dont know where I would be with out you . You have really been a big helping hand."

"I miss you so much. I love you.

I actually just started crying when I typed those texts. I'm sad for what you've lost, I'm sad I don't see you anymore, that you can't really talk to me, we still love each other the same but our friendship is different now and I miss you a whole lot. <3

I am glad you started the blog but it does make me incredibly sad when I read it, so I don't do it often. I feel like, I'm a nurse and I should be able to help you. I have all the education, but it is so useless in helping someone I love so much. I don't want to make your struggles about me, I hope I am not coming off that way..."

"Hey Shan I know you've been feeling down lately with all the medical stuff , I just wanted to tell you to stay strong. You are always there for me and everyone on the team, You are a gorgeous person Inside and out, and you can make it through anything. Get well soon Shan, love and miss you."

"Love your modeling pics on IG and super love your tri hair (of course). I'm back in the hospital. Sigh. Hope you're feeling a little better. Glad to see you blogging."

"That happened to my aunt when she had knew surgery. She was 23 at the time. In her 40s now. And has multiple surgeries which never helped. Sorry that's not encouraging news.. I really do wish the best.... That sounds terrible. I thought I had problems too young with a bad back."

"sorry to see the recent events with your body and health 😔 praying things get better babe."

"I wish there was something I could do for you 😩Your such a good woman... I love you and I wish I could be there for you. I will be back In town June 12-16 - If you need someone to wash & dry your hair..😪😁"

"Heard everything got worse!:( I really hope everything gets better and im sure it will!! I love you lots and Im here if you need anything shan"

Negativity Jumped In & I Needed To Check Myself, So.... GRATITUDE LIST A-Z

Does the negativity matter? Probably shouldn't, but it feels like it. Please stick with me, I need to vent the negativity, then I'll get to gratitude. I PROMISE! (Or if you don't want to read the vent, scroll down to the positivity. It's not like I'll know!!)

I'm in the process of losing my house. (I have a stack of medical bills a foot high, most from the few months I was uninsured, some from even with insurance!) And so of course, the mortgage also became very challenging.

POP QUIZ:   How do you pay for out-of-pocket health care and housing when you are too sick to work and you are denied disability by the government?
ANSWER:  Oh, I don't have one, I was hoping you did.

So times are tough. Clearly. I thought I was going to get a renter for my home and I was thrilled. I'd still be a little behind on the mortgage but I'd get a chance to catch up. But then my Realtor screwed the pooch big time, time and time again. So that deal fell through. And now the bank says my "grace period" to put off paying is over.

This leaves me with one real option: a short sale. (Unless any of you are secretly rich and are interested in charity cases?!) In case you don't know, a short sale is when your bank says, okay, you can get out of this and we'll sell the house for a loss. You still may have to pay those months of debt, and the hit to your credit score is nearly as bad as a foreclosure.

Anyway, the girl from the bank I was talking to on the phone about this had a stereotypical valley-girl voice, and was overly cheery. I don't know about any of you guys, but while detailing my health and financial struggles and hearing someone talking to me like that, it kind of make me want to strangle either her or me....just to make it stop. Like, please?!

So I get through it; I'm scheduled to discuss all this with a case manager next week. And she leaves me with, "Well, I hope I've solved all your problems. Thanks so much for being a valued member of the BAC mortgage family! You have a spectacular rest of your day!"

I'm sure some of that is standard shit she HAS to say, but Oh-Emm-Gee, did she actually hear what we discussed??  Yup. Problems solved. Valued member about to lose that mortgage. And spectacular day, yeahhh she definitely wasn't listening to the medical stuff I said. I don't HAVE spectacular days anymore. I have constant pain. It's not spectacular. It's just not.

Here's where I get better. After realizing I can't strangle her, because I don't even know what time zone she's in. And I don't want to strangle myself. That REALLY won't solve anything. And I really don't want to stew in this all day either. So I go through my metaphorical box of tools and think this is a time that calls for a gratitude list. Without further ado, here's my A-Z Gratitude List:

A- Ash, Amanda, Amy S-F, & Alkaline Trio
B- Blaze, Baltimore, basketball, baseball & Bryce Harper
C- Casey, coffee, cardiologists, & coaching
D- Dad, DD3, doctors, & Denny's
E- Erika & Eastern Shore of MD
F- FCB, friends, & family
G- Gavin & gay marriage equality
H- Hockey, Holtby, & hospitals
I- Ice skating & ice cream
J- Jill B for washing my hair when I couldn't
K- Kevin, Kerry, Kali, & Keurig
L- Love & life
M- Moo, M&M's, Molly, Moshe, Mom & mixtapes
N- Noelani, neurologists, & neurosurgery
O- Old-timers & the ocean
P- Pete, Pipeline Soccer Club, PHS, & perspective
Q- Quest Court
R- Rose gardens, red roses, & Reece's Pieces
S- Soccer, sports in general, Steph, & Sara
T- Tattoos, Third Eye Blind, twizzlers, & traveling
U- Undergrad years at Salisbury U
V- Vivian, my new friend & vows
W- Wifey & Warfields
X- X-ray machines. Yeah, I'm a sick kid. Medical technology is super important.
Y- Youth sports, youth mentoring, young love
Z- Zebras, of the Rainbow variety. The almost 22 year old one, and the almost 2 year old one