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#Hydrocephalus #ChronicIllness #ChronicPain #VPShunt
Head and eyes are hurting again. Am I surprised? No. Do I want it to stop? Hell yes.
I wish I could go to sleep right now...
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When will it END?
I get (late) up for the day.
My shunt starts over draining because I’m standing/sitting upright.
I get a bad headache.
I lay down and take a nap to counter that.
Then I end up only getting to sleep at 2 or 3 am.
And I get up late the next morning...
Somebody please help me end this crazy cycle 😒
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I don't know if this is a migraine or what, but it feels horrible. My eyes hurt. The part on my head where the shunt starts is so sore. And my head is throbbing. And I thought sitting in the dark would help... #Headache #Migraine #VPShunt #Hydrocephalus
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Medication
So I've been taking Nurofen, for the pain associated with my head, for the past week. It helps with hydrocephalus headaches and migraines.
But not so much with this pain I have around my shunt.
I'll either have to find something to help with that or just accept that I'll be living with this constant, alleged nerve pain.
#hydrocephalus #chronicillness #chronicpain #InvisibleIllness #VPShunt
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Hello, Hello!
Hello, all you Mighty folks. I’m “new to the crew” - just downloaded the App this evening. I’m excited to join a new platform connecting with a community of people struggling, surviving yet thriving just like me
I’ve battled the beast of brain cancer twice. Got 7 brain surgeries under my belt in 6 years. Been cancer free 🙌 for 5 years now! Though everyday remains a struggle with ALL the side effects, I’m still here! I’m fortunate to be alive despite all I’ve lost. So, I hope to connect with this community of people gettin’ through it, one breath, one step, one day at a time. 😊#Hello #braincancer #Cancer #Survivor #thriver #BrainSurgery #Epilepsy #Mobilityissues #AnaplasticEpendymoma #SideEffects #Radiation #necrosis #VPShunt #Community
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The masks I wear....
Sometimes I look in the mirror and I don’t recognize myself. The masks I wear has transformed a beautiful woman into an aged basket case. The masks I wear puts a smile in public even though my pain feels like it is tearing my thoughts from my mind. Each masks covers pain, stress and confusion. The woman I once was is now a figure I don’t recognize. Face swollen, eyes dark, teeth breaking I stare into the mirror wondering how did I get here? Who took my life? Who am I really? When will I find myself; and accept that this is who I am? I don’t think I’ll ever accept my state of being; but my masks make living in the moment a bit easier. My masks cover all my insecurities; but sometimes I think my masks hurt me even more than I think. I get into my head when silence falls. Night time is when I take off the masks and I look at myself again. I see this woman; she’s broken but holding on to one thing... her sanity.
#Broken #masks
#MightyPoets #poets #poetsandwriters #IIH #Depression #Anxiety #ChronicIllness #Swolleneverything #BipolarDepression #BipolarDisorder #help #IdiopathicIntracranialHypertension #VPShunt
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Life’s hard reminders... #EhlersDanlosSyndrome #ChiariMalformation #AvascularNecrosis #Anxiety #Depression #Caregiving #Cancer #VonWillebrandDisease #Survivor #VPShunt
This is one of those hard moments...
I’m hanging out in recover after my TAP block. This wasn’t my first. It won’t be my last. But it was my hardest.
Last night was one of this true painsomnia nights, I maybe got an hour of sleep. No position was comfortable. The more pain I was in, the more my anxiety rose. Thoughts pouring into my mind about everything this last year has brought and if I was going to be ok. Earlier in the day mom had actually asked if I had my moment yet, and I hadn’t. Sure I had cried, but I hadn’t let myself FEEL the emotions running through me. So I felt them, and then I FELT them.
Every single one of my disorders and ailments can be triggered by stress and anxiety, and when I let myself feel, it hit all at once.
So I finally dusted myself off after sobbing in the shower at 3am. Woke the family up and got ready to come to Presby. Where the registration ladies know my name, Starbucks knows my order and Interventional Radiology puts me in a room and lets me get myself ready.
This time though, the staunch reminder of our situation was staring me in the face. Usually my dad is always there to help on procedure days. With one or both kids. We have been so Blessed to have him the last 6 years helping whenever we need him. But my mom needs him more in her fight against #Cancer . So my husband handled the day and the kids and made this all work.
But it’s also a reminder that I’m also still a patient. I need to give myself Grace and remember that my fight also needs fought. Today I rest. I heal physically, mentally and emotionally.
Tomorrow is a new day. 💜
With pain comes strength 💪🏻
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It’s been a while... #CVID #SeizureDisorder #Disability #IntracranialHypertension #VPShunt #IVIG #MultipleSclerosis
So it’s been a long time since I posted... having multiple rare disorders are a pain, literally. Starting my subQ IgG replacement therapy seems to be giving me my life back with each infusion. My VP shunt that has been broken over a year is going to be fixed soon. I met the best neurosurgeon and I’m thrilled.
These new partial complex seizures are a whole other story. I will be worked up for MS soon because that’s exactly how it presents. With new med adjustments still these everyday moments of sudden fatigue to the point I can’t move or talk but can think are driving me crazy. It’s brief by 20 min later I’m perfectly fine but when it happens it’s like extreme slow motion. Then it’s like I freeze no talking no moving just freeze. I can think just not respond. I know that I have to give it time but it’s hard. I finally felt like I had my life handed back to me but every little bit someone says... not today and BAM I’m froze. I understand in a couple weeks I will have my shunt back up and running which can give me my life back and upping my IVIG can help so much too I just have to push through this flare up. It sucks during the process but I can make it.
One step at a time, one day at a time. I just have to hold my head up till then.
Just a little longer and hopefully it will be okay.
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Just hanging on.... #Depression #ChronicIllness #IntracranialHypertension #POTS #VPShunt
Once again I have let my family down, once again I didn’t do enough, once again I’m not enough.
I have spent more years sick with multiple disorders triggered by a traumatic brain injury in 2007. I have had my ups and downs like everyone else. My health use to appear relapsing and remitting, I would have a bad few weeks followed by a good month. Slowly the bad days started outweighing the good ones. Now I may get 7-10 good days a year. I have pulled myself up and went through unspeakable things along the way that was emotionally and mentally and some physical literal torture.
I was happy to find the love of my life a little over a year ago who is beside me always and helps with our two kids, they were my kids from a previous horrible marriage but my boyfriend took them in as his own. Still my extended family doesn’t understand what I’m going through. They have no clue how much pain and how my daily life actually is. My sister who is younger has a toddler and a new born, her husband is about to ship out for a year and wants to go see him before he leaves. I want to help her but I am just hanging on enough to take care of me and my kids while my boyfriend works. I know I can not adequately watch her two kids by myself for a couple of days. My kids are getting older so I am able to manage care for them and myself alone but not adding others to it. I hate that my family feels as though I let them down. I hate that the only time I ever ask for my kids to be watched is to go to the doctor or hospital and that it gets thrown in my face if I can’t do this than they may not be willing to help when I have to go to the hospital anymore. I want nothing more than to be able to watch my niece and nephew. I want to be able to work full time, I want to be able to travel and be a super mom who does all these fun wonderful things but right now I’m just hanging on moment by moment. It’s hard to feel like because I’m sick I let my friends and family down. I don’t want to be that way but I also want to live and not overdo it and end up admitted to the hospital again. I wish they knew how I felt and what is really going on behind the fake mask I have to put on around everyone else, but they don’t. I have finally become happy with me and my household but outside these walls of my home I can’t function. I would do anything for them to truly understand.
Like the song, “sometimes it all gets a little too much”, right now it’s just a little too much. So I’m going to try and hold my head up and realize that soon this too will pass.
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