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#psoriaticcolitis

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"I was your be all end all,
Your rise & your fall.
I was the smoke in your lungs,
Tearing you apart.
I was the slur in your speech,
Nightmares to your dreams.
You said you wanna get to know me.
But I think our lifelines became too intertwined & now we've paid the price.
You cried, "love's like watching someone die"
We should have just closed our eyes.
Do we have bad blood?
Do you feel the burn from my touch?
Darling, I always knew that we were doomed.
I stay cold, feel the weight of the world.
Now I always, always walk alone without you.
I was your be all end all,
Isn't that pitiful?
Oxygen to your blood,
Lead in your lungs,
Always tearing you apart.
But I think our lifelines became too intertwined & now we've paid the price.
I feel the weight of the world, stay cold & watch it burn.
I always, always walk alone without you." #spoonie #warrior #wonderwoman #autoimmunedisease #chronicillness #chronicpain #raredisease #psoriaticarthritis #psoriaticcolitis #seizures #tachycardia #ptsd #anxiety #treatment #recovery #lyricsarelife #ispeakmusic #musicismyescape #deepinthought #imbetteroff #theirloss

3rd treatment of Simponi! It's been a particularly difficult week, but make up does wonders! Being sick doesn't mean I always have to look sick! Thank you to my @covergirl and @hourglasscosmetics for my natural look that brightens my cheeks and covers my chemo rash! There is always a reason to smile! #covergirl #hourglasscosmetics #cosmetics #spooniefashion #sickinstyle #spooniewarrior #fightingfoward #autoimmunedisease #psoriaticarthritis #psoriaticcolitis #spondylitis #fchemo #infusion #smile😊

My Dr telling me 'there is no cure' was absolutely devastating. I remember sitting there quite stunned thinking this can not be it for life. Our body's ability to heal is greater than you could ever imagine. You CAN get better. You CAN rebuild a healthy immune system. The temptation to drug and suppress as a quick fix is very real ... but this is true, long term healing through food as medicine 🌿 #psorasis #psoriase #psoriaticcolitis #psoriasisproblems #psoriasisskin #skincare #eczema #eczéma #eczemaproblems #dryskin #rash #skin #medicine #healing #beforeandafter #beforeafter #beforeandduring #beforeandafterpic

Last evenings chemo and steroid injections hit me fast and hard. Nothing I did would take away the head and neck pain or the nausea. I took some different meds in hopes I would just sleep through the worst of it but in all honesty I think those meds made me feel worse. Today's treatment we have ran very slowly as to not exhaust me too much more but I can tell you that my resting heart rate says I'm running a marathon. Oh well such is my life. Must Warrior On and keep fighting. #spoonie #warrior #wonderwoman #autoimmunedisease #chronicillness #chronicpain #raredisease #psoriaticarthritis #psoriaticcolitis #seizures #tachycardia #ptsd #anxiety #vasculitis #treatment #depression #recovery #hospitallife

Day 3 of "Hell Week" has been an interesting one. Remicade/Chemo makes me feel like I have ran several ultra marathons. I tend to start feeling bad about 5min into the fastest flow cycle...so like usual we had to back the rate down and then I got another 25mgs Benadryl. I'm exhausted and will be trying to go to bed early tonight as I have my brain MRI tomorrow morning. I'm beyond over this #hospitallife but I have no choice. Without these treatments I would not be walking still. Only a couple more weeks of this almost 7 month wait and I go to Hopkins. I am not sure what all will happen or what to expect but one thing I know is I'm not getting my hopes up. These are the next necessary steps in living with several chronic illnesses. #spoonie #warrior #wonderwoman #autoimmunedisease #chronicillness #chronicpain #raredisease #psoriaticarthritis #psoriaticcolitis #seizures #tachycardia #ptsd #anxiety #vasculitis #treatment #depression #recovery

Snuggled up at "home" and praying for some of the pain to settle. I've only slept about 6 hours since Monday and am hoping to rest while here. I honestly need a week off from everything to truly heal before the next spine surgery but that is not possible...so I will soak in what rest I can get and be thankful for My Tribe. #spoonie #warrior #wonderwoman #autoimmunedisease #chronicillness #chronicpain #raredisease #psoriaticarthritis #psoriaticcolitis #seizures #tachycardia #ptsd #anxiety #vasculitis #treatment

The last several days have been a roller coaster. Physically & emotionally. Yesterday, I saw one of my specialists. He informed me I'm no longer neutropenic but boarder line anemic. My vasculitis is in a very severe flare. The Psoriatic Arthritis is causing my right side to swell & my leg to with out warning give out. (I have fallen 6 times in the last 2 days) All of this would explain my complete exhaustion but not why my immune system crashed yet again. The strep throat with sinus infection are being treated with 3x strength oral antibiotics. Unfortunately as I sit here, attempting to relax, the intensity of kidney pain & low grade fever are becoming quite alarming. Hoping to make it through tonight & actually sleep more than 2-4 hours... I desperately want to avoid a trip to the Emergency Room as that would put me at even greater risk. I know I need at least 1 round of high dose IV antibiotics through my port. If not two. I am thankful my nurses left my line accessed today but I have to say my chest is soooo sore. Next week is supposed to be "Hell Week" but I can't do my chemo injections or have IV Remicade/chemo being on antibiotics with a fever & infection. I'm tired of recovering from one infection to only have a month maybe two months back on track until the next infection hits me! I want to run away & pretend none of this is happening. #spoonie #warrior #wonderwoman #autoimmunedisease #chronicillness #chronicpain #raredisease #psoriaticarthritis #psoriaticcolitis #seizures #tachycardia #ptsd #anxiety #vasculitis #treatment #recovery #mediport #accessed #frustrated

MOST RECENT

I always struggle with obtaining sleep. But since end of May it feels like an impossibility. In a 24 hour day I am lucky to get 5-6 hours of sleep. I normally can rally to get everything done that I need to but it's becoming increasingly difficult. The less sleep a person gets the more emotional they will be. Common side effects of insomnia are body aches, low immune system, over emotional, the feeling of despair, emptiness, craving high calorie foods, 😭crying a lot, confusion, disorientation & feeling beyond overwhelmed. I am struggling so badly at the moment & all others say is "well you should try this or that....well you should do this or that....I wish I could help you..." However, after so long I have indeed tried everything there is out on that market for "sleeping better". All I know is I'm planning a trip away very soon! A hotel in one of my favorite places & room service or uber-eats the whole time. It's a must so mid November I'll be enjoying my alone time. Finally! So I'm off to take more meds and pray I sleep. I hope y'all had a great weekend. To my Spoonies thank all of you who have reached out to me over the last week. It means the world to me.
#servicedog #workingdog #dog #dogsofinstagram #support #spoonie #warrior #wonderwoman #autoimmunedisease #chronicillness #chronicpain #raredisease #psoriaticarthritis #psoriaticcolitis #seizures #tachycardia #ptsd #anxiety #treatment

"I was your be all end all,
Your rise & your fall.
I was the smoke in your lungs,
Tearing you apart.
I was the slur in your speech,
Nightmares to your dreams.
You said you wanna get to know me.
But I think our lifelines became too intertwined & now we've paid the price.
You cried, "love's like watching someone die"
We should have just closed our eyes.
Do we have bad blood?
Do you feel the burn from my touch?
Darling, I always knew that we were doomed.
I stay cold, feel the weight of the world.
Now I always, always walk alone without you.
I was your be all end all,
Isn't that pitiful?
Oxygen to your blood,
Lead in your lungs,
Always tearing you apart.
But I think our lifelines became too intertwined & now we've paid the price.
I feel the weight of the world, stay cold & watch it burn.
I always, always walk alone without you." #spoonie #warrior #wonderwoman #autoimmunedisease #chronicillness #chronicpain #raredisease #psoriaticarthritis #psoriaticcolitis #seizures #tachycardia #ptsd #anxiety #treatment #recovery #lyricsarelife #ispeakmusic #musicismyescape #deepinthought #imbetteroff #theirloss

I know this spot. I like to lay on this spot. I watch Mommy carefully from this spot. This spot is where we wait for our room at the infusion center of the hospital 1-3 times a week. Momma doesn't like this spot but she knows she needs to be here.
#servicedog #servicedogflo #workingdog #medicalertdog #lab #blacklab #labrador #dog #dogsofinstagram #lovemyjob #worklife #support #spoonie #warrior #wonderwoman #autoimmunedisease #chronicillness #chronicpain #raredisease #psoriaticarthritis #psoriaticcolitis #seizures #tachycardia #ptsd #anxiety #treatment #recovery

Last Thursday I packed up my girls, service dog and with my Momma we headed West. After 4-5 hours of driving we stopped for the night and continued on the next day. We finally arrived in Russellville, IL to surprise my Grandmother. Whilst there I had several specific things I had to do for my own mental health. One was to make peace with the fact I was not able to attend my Grandfather's funeral in 2013. It was tough but I sat there thinking about all he had taught and the Native Blood he gave me. #family #tribe #love #forgiveness #selfhealing #spoonie #warrior #wonderwoman #autoimmunedisease #chronicillness #chronicpain #raredisease #psoriaticarthritis #psoriaticcolitis #seizures #tachycardia #ptsd #anxiety #treatment #recovery #youtuber #youtube #vlog #vlogger #inspire #graveyard #rip

Yeah, you don't wanna make this work
You just wanna make this worse
Want me to listen to you
But you don't ever hear my words
You don't wanna know my hurt, yet
Let me guess you want an apology, probably
How can we keep going at a rate like this?
We can't, so I guess I'ma have to leave
Please don't come after me
I just wanna be alone right now, I don't really wanna think at all
Go ahead, just drink it off
We both know you're gonna call tomorrow like nothing's wrong
Ain't that what you always do?
I feel like every time I talk to you, you're in an awful mood
What else can I offer you?
There's nothing left right now, I gave it all to you
Oh, you wanna be friends now?
Okay, let's put my fake face on and pretend now
Sit around and talk about the good times
That didn't even happen
I mean, why are you laughing?
Must have missed that joke
Let me see if I can find a reaction
No, but at least you're happy
#spoonie #warrior #wonderwoman #autoimmunedisease #chronicillness #chronicpain #raredisease #psoriaticarthritis #psoriaticcolitis #seizures #tachycardia #ptsd #anxiety #treatment #recovery #lyricsarelife #musictherapy #icanteven #nfrealmusic #nf #rap #bluehairdontcare

It's been about a week since I posted but I want to send out a little something. Momma and I are doing all we can to manage the new issues and her physical limitations. We made it through Hell Week and today we have rested some and will be going out to explore a bit with the family.
#servicedog #servicedogflo #workingdog #medicalertdog #lab #blacklab #labrador #dog #dogsofinstagram #lovemyjob #worklife #support #spoonie #warrior #wonderwoman #autoimmunedisease #chronicillness #chronicpain #raredisease #psoriaticarthritis #psoriaticcolitis #seizures #tachycardia #ptsd #anxiety #treatment #recovery

#fchemo but love my treatment outfit! after a not so great week and feeling so tired and head full of water instead of brain , I needed a little pick me up. I feel like shit, don't mean I got to look like shit 👯 comfy outfit, comfy flats, and no ironing🤗 #hoorah
skirt: #necessaryclothing
shoes: #toryburch
earrings: #alexisbittar
#spoonielife #spooniefashion #warrior #simponi #psoriaticarthritis #psoriaticcolitis #autoimmunediseases #ptsd #spoonielove #treatmentoutfit #nevergiveup

My kids mean everything to me...they are my main reason for fighting 18 incurable diseases. I am the most fortunate woman to have always wanted a son and 4 years ago he came into my life. My two girls were 100% planned with my Drs and medication schedules...I love the fact they were dreamed about, planned for and not an accident. I love each of them so much but each one of them very differently. Miss Bree @heyyy.its.destiny and @phillionaire I couldn't be more proud of the humans you're becoming.
#mom #children #son #daughter #thankful #loyal #proudmom #smile #myheart #spoonie #warrior #wonderwoman #autoimmunedisease #chronicillness #chronicpain #raredisease #psoriaticarthritis #psoriaticcolitis #seizures #tachycardia #ptsd #anxiety #treatment #recovery #youtuber #youtube #vlog #vlogger #inspire

I've had my fair share of disappointments in my life. Witnessed things no one should ever see. Survived pure hell. Cried millions of tears & laughed 10million laughs. Several years ago I started the journey of sharing my crazy chronic life with the world through Social Media. I am so happy to know I've positively impacted thousands. I get DM's daily thanking me for my posts & to keep going. I have not & will never take those messages for granted. I have saved every single one of those messages. The past years have taught me a great deal about myself but more importantly about the actions of others. Sadly I have fallen into always seeing the best in people even when my gut tells me other wise. Ending in heartbreak for me when they've used me completely, taken my compassion as attraction & so much more. I sit quietly as they blame me for a relationship death. I could list their names but TBH that would do no 1 any good & that's not what I'm about! However, I'm getting highly pissed off at this point. So this is a message to the Trolls... **I would like to kindly ask you to stop reporting my posts on all Social Media Platforms. I've never been reported more than I have in the last week & a half! Your personal hate for me is pathetic as you do it hiding behind a screen sitting in your place of personal comfort. Please remember I'm in this business & see the underworld of socials for my clients. I have people in high places that owe me favors so the more this behavior continues I will have your identity fully released to me & not just the general location your "report" came from. I don't want to get nasty or out who you really are. I don't want to be pushed to a point where rage takes over rational thought. So I will ask again....Please STOP! This is bigger than your feelings about me.**
I want to continue to be here for y'all. I thank each one of you for your support. One Love from Me to You...🖤
#trollsgetoffofmypage #nohate #spoonie #warrior #wonderwoman #autoimmunedisease #chronicillness #chronicpain #raredisease #psoriaticarthritis #psoriaticcolitis #seizures #tachycardia #ptsd #anxiety #treatment #recovery #youtuber #youtube #vlog #vlogger #inspire

After finding out our house-guests would not be coming for their planned trip we had a discussion about "what should we do now that ALL of our plans had to be canceled?" Should we just cancel our days off or keep those days to get caught up on some stuff?!? All original plans adjusted...we got through lots of Family/Life Business items. Spent a day hiking and lots of time spent with Tribe. Ending in Tattoo Date Day yesterday. Overall the time was spent well and as I opened my eyes this morning I truly wasn't ready for Single Mom Life the next few days 😔I am missing having people around me today but I am holding onto the fact that even with my emotional pains I've had a pretty good last few days. I'm looking forward to a very busy next couple weeks...busy helps my mind stay focused on other things and not dwell in bad areas. Then after this next few weeks I'm taking my girls on a road trip. So much to do but all leads me to happy places.
#spoonie #warrior #wonderwoman #autoimmunedisease #chronicillness #chronicpain #raredisease #psoriaticarthritis #psoriaticcolitis #seizures #tachycardia #ptsd #anxiety #treatment #recovery #youtuber #youtube #vlog #vlogger #inspire

We did a thing today. We hiked up a mountain! Hard work but I was able to help Momma as she wore my lead around her waistline. I pulled a little harder when she would ask me to... I can't believe we did it. Happy Momma makes for a Happy Puppy.
#servicedog #servicedogflo #workingdog #medicalertdog #lab #blacklab #labrador #dog #dogsofinstagram #lovemyjob #worklife #support #spoonie #warrior #wonderwoman #autoimmunedisease #chronicillness #chronicpain #raredisease #psoriaticarthritis #psoriaticcolitis #seizures #tachycardia #ptsd #anxiety #treatment #recovery

As I'm laying here trying to fall asleep my heart is racing it's sore & my chest walls hurt. The over all body pain is to a point where I tend to cry a lot throughout each day. I am an anxious mess thinking about what the Drs official decision/outcome will be. I'm so very stressed and doing all I can to stay afloat. I have little left of me to give and almost ALL of my spoons I get are from my 3 amazing children. They are my reason why...it would be easier to give up if they didn't need a Momma. They are worth every spoon I spend on them!!!! So if I am making an effort it's because I want to! It's because my heart wants to! It's because I can't see my life with out some people in it. I've been told far to many times to count "if I lost you I wouldn't be able to survive!!!" Well all I can say is "look at y'all...out there surviving and shit without me!!!" As I'm heading into a very very busy next two months I will hold onto my kids very tightly, snuggle more and laugh as much possible.
Also please don't forget to subscribe to my vlog and watch my posts. They are a better way to know what I'm going through on a day to day basis. The link is in my bio. Thank you all who have already subscribed. One Love ❤️ #spoonie #warrior #mother #son #daughters #smile #wonderwoman #autoimmunedisease #chronicillness #chronicpain #raredisease #psoriaticarthritis #psoriaticcolitis #seizures #tachycardia #ptsd #anxiety #treatment #recovery #youtuber #youtube #vlog #vlogger #inspire

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