Tammy Freeman

@tammyfreeman2020 | contributor
Although none of us would choose to have whatever brings us to The Mighty, I believe in the community of support this site offers. I write about my own experiences that I think are fairly universal in the chronically ill population.

My Experience With Brain Surgery Recovery

Recently, I had brain surgery. I had a non-cancerous brain tumor that was impacting a large portion of my brain. When people ask me how I’m doing, I try to be honest but also put a positive spin on it. For example, “I’ve been better but I’m definitely healing!” But today I’m in a lot of pain. This is so hard. I am struggling. I’m 17 days post-op. When I wake up in the morning, I feel very much like myself but with a headache. And then I get out of bed and see what kind of day it’s going to be. I don’t feel like I just had brain surgery until I try to do something. I don’t feel weak or out of it or dizzy or just not like myself. When I wake up in the morning, I just feel like me. And then, every day is different. The last few days, and today, are really hard. The severed nerves are growing back and it burns and feels like lightning around my entire scalp down into my neck, shoulders and back. It feels like there’s a strap around my head and and it pulls really tightly every so often, but not constantly. I have this constant headache deep, deep, deep in my head. My doctor told me to be prepared to live with that headache for a year or two, but it will lessen over time. My hair laying on my scalp feels really heavy, but I can’t pull it back because it tugs, which is overwhelming. Forget brushing my hair or taking a shower. I’m wearing a beanie right now because the very light pressure helps a lot. There’s no predicting the nerve pain. Nerve regrowth and regeneration, and then rewiring the brain is inconsistent. And saying “inconsistent” is an quite the understatement. I have power surges where I’m suddenly super energetic and focused and funny and I can do anything. I love these times. I’m hopeful that these power surges are a sneak peak of who I’m going to be soon. When this happens, I do kinda feel like the me that I know, the me that I was before all the chronic pain started seven or so years ago. I have trouble swallowing solid foods, so I’m eating a ton of soup and fruit, whatever’s soft. I can speak normally, but in spurts. I can chat for an hour, but then my throat hurts a lot and I get hoarse. I’m still not making/taking phone calls. It’s just too much. I can, and want to, hang out with friends, but I can’t really plan it because my energy and pain levels aren’t consistent. I am at home with the heater on right now, and I’ve got shoes, socks, fleece pants, a sweater over a long shirt and a beanie and I’m still cold. In an hour or so, I’ll change into shorts and a tank top. I didn’t expect hot flashes, but here I am. I drop many items that I pick up with either hand. I run into walls sometimes and really just in general my coordination is terrible. Earlier today I tripped on a box and I almost fell, but I landed in a standing yoga pose instead. My memory is awful! I’m told I ask the same question three times a day. People have to tell me the same thing over and over. I cannot keep up with what day it is or what I did yesterday or if I’ve eaten. I did a cognitive assessment at speech therapy and I did fine on the cognition part, but I failed the memory part. In general, though, I don’t have a great memory, so I just can’t make myself believe this is totally a side effect of surgery or medication. My cousin took me to the grocery store yesterday and I’m pretty sure she felt like she had a toddler with her. I’d be just standing around, confused, not sure what I was going to get, and then getting olives because I remembered we talked about olives, so that must be it. We need olives. She actually sent me to get peanut butter. What she’d actually said was that she didn’t like olives and we already have some at home anyway. I just got confused. I did an audiogram yesterday with my regular audiologist, as I have a hearing aid in my left ear. My hearing hasn’t really changed that my much. We compared my test yesterday with my last one, and one part was a little better and one part was a little worse. So while I feel like I can’t hear anything, the audiogram indicates there’s not a substantial change. Maybe my brain is overloaded and that’s why I can’t hear anything. Maybe I’m just overwhelmed. Or maybe I’m not paying enough attention. Day to day, my attention span is that of a gnat. It hurts to read and I can’t focus on the words in the book. Television makes my head hurt, as does my cell phone. I spend a lot of my day with my dog. I had a goal to finish my master’s program by August, but that’s extremely unlikely. And I’m ok with that. Nobody plans for a brain tumor to come along and take over your life for a few months. One of the reasons I’m so open about what I’m going through is because it just helps me to write. Writing is therapy for me. Another is because everybody has problems, and we have to take care of each other. Maybe, by me talking about it, other people will feel encouraged or less alone, even if they don’t comment or reach out. Ask me questions about the tumor or Hashimoto’s or fibromyalgia or endometriosis or whatever else I have. Or tell me about what you’re going through. Let’s talk. Let’s go walk the dog. Let’s take care of each other. You know your secrets are safe because I won’t remember what you told me anyway. Brain Surgery: Zero stars. Do not recommend. Recovery sucks. It will get better. It’s definitely worth all this pain and I’d do it again if I had to. But it’s really, really hard.

Community Voices

🤣Silly Topic Of The Day 🙃 What is somethong everyone looks stupid doing?🤪

<p>🤣Silly Topic Of The Day 🙃 What is somethong everyone looks stupid doing?🤪</p>
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I have a brain tumor.

The end of September, I went to New Orleans with a friend. We go almost every year. This year, we had had a really great day, followed by a good seafood dinner. And then we were walking back to the hotel to soak in the hot tub when I began having a visual disturbance called an aura. It wasn’t like double vision. It was more like kaleidoscope vision, where I could see everything 10x. My friend asked me if I was ok, and I said that I was, which wasn’t true and she knew it. She propped me up on her hip and tried to get to me to the corner so she could call a cab.

The next thing I knew, we were in an ambulance, and the EMT was asking me, what felt like over and over and over, who the President is and what year it is. I felt small, puny, insecure, confused. I don’t remember this but I’m told I said that it was 2016 and Bill Clinton is the current President. He’s not even my favorite former President, so I don’t know where that came from.

I was admitted to the Emergency Room for evaluation. My friend couldn’t come because of COVID. A lot of people came and went out of my room. My blood pressure was low, but my heart rate was around 130 and climbing, so they brought me an anxiety medication. The docs decided to do a CT scan to rule out the very unlikely chance there was an abnormal growth in my brain. I slept. I remember transferring from one gurney to the next, but that’s it.

And then, in walks Captain NeuroSurgeon. Seriously, this guy obviously thought he deserved a superhero cape and glitter. I remember very little, but I remember him saying, picture this in the classic superhero stance, “I’m not a nurse, I’m a NEUROSURGEON.” and I actually laughed. I think I perked up because I was sure he was about to tell me the seizure was a fluke and I could go on home now.

But then he said, “You have lesion on your brain.” and everything got foggy again. I don’t remember much for a long time. We did an MRI to get a clearer look. And then Captain NeuroSurgeon came back and told me they’d likely admit me for immediate surgery if it was his decision, but it wasn’t his decision because it was shift change. The next one was also a little bit arrogant, but he was way nicer. Went by his first name, assured me there was no reason to admit me and that was a dumb thing to even suggest. I was assured several times I do not have brain cancer. A couple of neurologists stopped by. A couple of radiologists too. The one that found the tumor came and talked to me, and I remember nothing that we discussed, but I remember feeling cared for and safe.

The nurses brought me warm towels every time they refilled my water cup. They walked beside me if I went to the ladies room, but didn’t help me unless I asked. They’d stop and chat some. Tell me stories and laugh at my jokes. I have no idea what we talked about, but it was so nice of them to spend time with me. They had the radio on. They were wonderful. I have more experience than I care to with this kind of thing, and far and away University Hospital in New Orleans was the best hospital visit I’ve ever experienced.

So I got discharged the following day around 12:00, I think, with the instructions to find a local neurosurgeon and take this medication that makes me feel drunk. I will acclimate to it, and I’m doing better with it now. But man that first week I was at home, I remember calling my dad and telling him, “I have to tell you something important.” But I have no idea what I told him. I called him again later on, several days later, to tell him again in case I got it wrong. It was rough that first two weeks. I had about four or five hours a day where I could work and I’m so very thankful for the professional team I have.

My type of brain tumor is epidermoid. It’s on my brain stem. I know very little about it, except it was formed in utero and even though this is the first I’ve heard of it, I’ve had it, lurking and growing back there, my whole life. It’s possible that it’s contributed to some of my chronic health problems, but we won’t know anything for some time. I’m trying not to get too caught up in unreliable internet sources, and that’s actually fairly easy, because this is a rare tumor and there’s not a lot of literature.

So…yeah…I have walnut-sized brain tumor. This is bananas. I’m having trouble fully grasping it all. I’m confused and weak. Stunned.

I have a brain tumor.

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Community Voices

What symptom is most present today?

<p>What symptom is most present today?</p>
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How do I get my doctor to give me something for anxiety without making it seem as though I am drug seeking?

I am not even sure of which doctor to ask. My primary or my Rheumatologist?! All I know is that I get so freaking frustrated and mad at everything and then I can’t breath and then I’m exhausted from trying to control it or hold it inside. #Lupus #Anxiety #Depression #newlydiagnosed

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What's your Favourite Netflix series? after the books, Netflix often helps me to distract myself from bad symptoms📘🖥

<p>What's your Favourite Netflix series? after the books, Netflix often helps me to distract myself from bad symptoms📘🖥</p>
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I Struggle With My Chronic Illnesses and I am Not OK

I have fibromyalgia, Hashimoto’s thyroiditis, spondylosis and endometriosis. I have changed my lifestyle, the way I eat, sleep, socialize and so forth, so I can make the most of each day and use my “spoons” as efficiently as possible. My first diagnosis came in 2014 and they’ve been coming about one more each year since then — an array of women’s health and autoimmune problems. If you looked at me, you’d never guess. You see my smile, my boisterous laugh, my interactions with my colleagues and clients, and you think I’m great. Maybe even athletic because I have a naturally muscular build. The thing is, I’m finally at the point where I can just accept, admit and say out loud: I’m not OK. I’m struggling. I love my job, but it is stressful. It’s pretty fast-paced and no two days are ever alike. I have a lot of responsibility I take very seriously. I started a food pantry at my church, and I work with the youth group. I love doing it. It’s usually good for me, but it feels sometimes like just another thing I’m not doing right. I’m working hard to build routine and processes into my entire life — how I manage my nutrition, sleep, social life and so forth. But the truth is: I’m overwhelmed. I’m tired. I’m in pain. I have anxiety I just can’t manage. I miss “me”. I can’t keep up. I am not OK. Regardless of all the changes I’ve made, the medications I take, the alternative therapies I’ve tried, the second, third, fourth, fifth doctor’s opinions, I am forever changed. And I can’t see how it’s in any way positive. I’m struggling to accept myself and my limitations. I don’t really know what those limitations are, because they change seemingly daily. I want so very badly to be in a daily routine, I can’t even explain how badly I need a routine for the sake of my mental health, but I can’t manage to get myself into anything consistent because of pain and energy levels that change daily. This is grief. I am grieving the version of myself I used to be. In the last several years, I’ve changed medications, diets — anything you can think of — all in the hope I’d find some semblance of the life I had in mind for myself. But that hope has to change into a hope I can still love myself and be at peace with this version of me. I’ve been trying to be the old me, with not enough respect for the new me. So, I’m finally at acceptance — not peace, not yet — with the knowledge I’m a new me. But with this acceptance comes anxiety. What can I do? What can I not do? How do I establish routines for myself? What am I going to do wrong? What am I going to fail at? When is everyone going to realize I can’t keep up? When am I going to make a tremendous mistake that ends my career? I am not mad at myself, nor do I pity myself. I’m depressed and anxious, and just getting by. It’s hard. I don’t know what else to do right now. Just cope and keep on keepin’ on until I am OK. I tell everyone I’m fine, and if I’m not fine today, I’ll be fine tomorrow. But the truth is, I am not OK. Can you relate? Let Margaret know in the comments below.

Trying to Handle Life With Chronic Illness

I have Hashimoto’s, fibromyalgia, spondylosis and endometriosis. I also volunteer with my church and Team RWB, a veteran’s service organization. I’m married and I have a full-time job, and I’m a Reservist in the Army for at least three more years. I do my best to handle all my commitments and to be where I’m supposed to be and to stay organized, but it’s hard. I think staying busy is hard for anyone, but when you throw in chronic pain and fatigue, it’s overwhelming. I simply can’t do everything. Even when I write things in my calendar, sometimes I forget to look at my calendar. Just this last weekend, I had a commitment at church, and the weather was bad, so in my head, I didn’t have to be anywhere. So when they texted me at 11:14 (service starts at 11:15) as a reminder, I just froze in embarrassment. I told the coordinator that I was so very sorry, I completely forgot, but that I was wrapped up in heating pads and cats. She assured me it was not a big deal and she had it covered. In the grand scheme of things, it’s very minor thing, but I felt, and still feel, terrible about it. These situations are particularly hard for me because I’m doing so much to take care of myself. I get plenty of sleep every night, I drink nearly a gallon of water daily, I take my medications and supplements, I do yoga daily, I go to physical therapy, I have coping mechanisms for anxiety, I follow a pretty stringent diet, I go to so many doctor appointments, the list goes on. Being chronically ill requires a change in lifestyle and fairly constant planning (food, medications, heating pads, etc). All of these things help immensely, but I still have bad days, which trigger a depressive response. Despite everything I do, I’m going to have these illnesses for the rest of my life. So I get sad and frustrated. I try to take it a day at a time; it’s hard to make plans because I don’t know how I’m going to feel. And that makes me sad and frustrated to the point that it affects my self-esteem. I’m doing everything I can. But the bottom line is I’ll never be the same. No matter what I do, there’s no cure. So on good days, I’m thankful. On sluggish days, I just push through. On bad days, I shut down. I communicate to my circle that I’m down for a day or two and hope they’re understanding. They usually are, but I want to be reliable. I want to be on top of everything. This fatigued, depressed, frustrated, unreliable person isn’t who I want to be, but it’s who chronic illness has made me. I use the old school paper calendar in my purse, where I not only record my daily symptoms but also any plans that I make, I put reminders in my phone, I ask friends to remind me about plans. I texted a friend the other day, “My favorite necklace is in my console.” She thought I texted the wrong person, but really I just needed someone else to know where it was in case I forgot. I sign up for reminders from every doctor’s office and the pharmacy. I only schedule one social thing a weekend because I don’t want to overcommit and run out of energy. I have medication and disposable heating pads stashed everywhere. I volunteer because it gets me out with people, even though I sometimes have to cancel commitments. I still occasionally feel like I’m never going to get on top of all this, and it’s really hard to accept that this is my life now. But then on good days, I feel like myself and I’m thankful and happy. I have learned not to overdo it on good days, because then the next day will not be a good day. Before I developed these illnesses, I was a dedicated distance runner and routinely ran 20-25 miles a week. I was a gym rat and a social butterfly. I am resentful of these illnesses taking that from me. I want to go get lost in my own thoughts during a 10-mile run. I want to spend an entire day at an outdoor music festival, not caring that I’m getting dehydrated and eating a ton of fried food. I wouldn’t say I’m new to chronic illness, as I was diagnosed two years ago. But obviously I’m still getting accustomed to my limitations. Some days are just harder than others, and today is hard.

Community Voices

You need to (insert unwanted advice)....

OMG! If one more person gives me unwanted advice, I’m going to loose my SHIT!!!

You need to.....

Exercise more
Rest more
Get out of bed
Eat a paleo, vegetarian, vegan, plant based diet
See a physical therapist, psychotherapist, gastrologist, auto immunologist, and any other ologist they can think of
Get acupuncture, massages, cryogenic therapy, sun therapy, Myers cocktail, oxygen therapy, Botox
Take vitamins A B C D E F G ........
Ask for help
Be more independent
Try the latest whatever that someone told them about
Drink more water
Try this medicine
Stop taking that medicine.

How about, stop trying to solve my health challenges and pass me some chocolate! lol
#Fibromyalgia #PMDD #IrritableBowelSyndromeIBS #Pain #Migraine

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Attention Span

Has anybody found my attention spa-------I've lost my drink, I'll give my dog a bath, wait no, let me fold my laundry, ok I'm going to study now but first let me get a blanket, where are my fuzzy socks. Oh here's my grocery list, I'll run to the store real quick, why is the bathrub running, why am I wearing fuzzy socks.

UUugghhhh.....

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