Dealing With Setbacks

Dealing With Setbacks

As you all might have noticed, I haven’t posted in over a week. I was working on two different posts, but as can always happen, along came a setback. And it was kind of a big one. So I thought I’d use this blog post to share what happened and update you all on my health.

About a year ago I was in the hospital for dehydration, and as part of the tests they were running they did an abdominal cat scan to check for any problems. They didn’t find anything big, but they did see something that looked like a little mass near my right ovary. They said it wasn’t anything to worry about, so I didn’t worry about it. About three months later I had a kidney stone and ended up in the ER. They did a cat scan and an ultra sound, and they again saw the same mass about the same size and they told me again it was nothing to worry about. About four time since then, I’ve had sudden and severe right lower abdominal pain, and I took a pain pill and waited it out, and within an hour or so, the pain went away. I assumed it had something to do with the mass, but because it never lasted, I never worried too much about it.

Last Thursday around 6:30 am, I woke up with similar lower right abdominal pain. So, I did what I always do. I took a pain pill and laid in bed waiting it out. But the pain didn’t subside. About 9:30 I couldn’t take the pain anymore, and I knew enough to listen to my body that something was wrong. So I asked my mom to take me to the ER. (Now, I HATE going to the ER, so for me to ask someone to take me is a huge deal.) They got an IV going and gave me some serious pain medicine which helped a little but still didn’t take the pain away. I knew something was wrong. They did a cat scan, and it looked like the mass near my ovary had grown, so they did an ultrasound and that’s when things went south. The doctor came back and said they could no longer see my ovary because the mass had overtaken it. They immediately called in the on-call OBGYN who looked at my scans and said I needed surgery. That night. He also said that because of my MS the surgery wouldn’t be same-day. He wanted to keep me at least 12 hours. So they loaded me up with pain medication again and had my mom take me to a different hospital. (The hospital I was at doesn’t have inpatients, so I had to be taken to another hospital where they could admit me as a patient.)

They got me ready for surgery and then I waited. They gave me some more medicine (I’m telling you it was so difficult to keep my pain level under control) and then the doctor came in to talk to me. He said he looked at my scans again and it looked like the mass had overtaken my ovary. He looked from several different views and they couldn’t see any part of my ovary, so he said I would most likely lose the ovary in surgery. He said it was probably the only way. I was a little upset about this (I’m still in my 30’s and single and would like to possibly have kids in the future, and losing an ovary was a scary thought). They gave me the “happy juice” (the pre-surgery calm down medicine) and wheeled me into surgery. Next thing I remember was waking up violently ill. I come out of anesthesia so sick. I had told the doctor and anesthesiologist that, and so as a precaution they gave me the full dose of phenergran, zofran, another nausea medicine and put an anti-nausea patch behind my ear. When I woke up so sick the recovery nurse couldn’t believe it. She kept saying “If you’re this sick with all those medications, I can’t imagine you waking up after surgery with nothing”, which was of little help. Lol

I finally was able to wake up enough to not be sick and they took me upstairs. As soon as I was lucid enough, I had one question. Did I still have my ovary? The doctor was still there and that’s when he explained what happened. I still had my ovary. It turns out that the mass wasn’t on my ovary at all. Apparently the mass was on the back side of my uterus. It was slightly bigger than my uterus, so the part they were seeing near my ovary was the overhanging part. The reason the pain was so bad was because sometime the night before it twisted and was cutting off the blood supply to it and it was dying. And the reason they thought it was on my ovary was because when it twisted, it kind of “flopped” over in front of my ovary so it appeared it was on my ovary when in reality it was just sitting in front of my ovary. That’s why I was lucky enough to keep my ovary. He said the uterus didn’t lose any blood flow, so I was able to keep that too. They did the surgery laparoscopic, but they had to make the incision on my belly button about an inch larger than normal to be able to remove it. Also, he said it didn’t look cancerous so he felt confident in cutting it up into smaller pieces to be able to remove it. (Had it looked cancerous he would have made the incision even larger and taken it out in one piece.) He said they are still going to biopsy it to make sure it’s benign, but he felt pretty confident in that.

So after 18 hours in the hospital post-op, I was able to go home. It was so nice to be able to be in my own bed and with my family. I really do have an amazing support system. I had wonderful members from my church stop by to check on me and bring meals in for the family. My internet best friend was amazing and sent inspiring and encouraging quotes to my phone several times a day to help boost my spirits and help me to feel better. I have felt so loved. I have also been in a lot of pain. I had post-op bleeding for several days, which is normal but painful. I’ve had pain inside that has started to get better each day (after about the third day) and pretty serious incision burning and pain. I’ve also been exhausted. For the first three days after surgery, the only physical thing I did besides getting up to go to the restroom or to bed, was to go outside and walk to the end of my block and back three times a day on my doctors orders. Monday I went to a different doctors appointment, then stopped for lunch with my sister, then ran with her to get some blood work and then stopped at the store for a moment, and by time I got home I was in so much pain and so physically and mentally exhausted. That was a rough day. So I rested a few more days and didn’t do much. One day I helped make dinner, and one day I organized my room and went through my winter clothes. After both of those days I was tired, but not as exhausted as before. Yesterday I got out of the house and treated myself to a manicure, and today I went to my sisters house and we did a few little crafts and then played wii. Just anything to get out of the house and feel human again.

All of this was so unexpected, but it taught me something so important, which is to listen to your body. I had had this pain before, but I knew it was different when it wouldn’t go away. I have had severe pain before, but the fact that the pain medicine in the hospital wasn’t helping was a sign to me that something serious was wrong. And, while I hate going to the ER, I knew I needed to because my body told me. I think it’s so important that we listen to our bodies. We know what’s normal for us. Pain for me is normal, but this kind of pain and lasting for so long isn’t. It’s important that we advocate for ourselves.

Anyways, that’s why I haven’t posted for awhile. But I’m working on a couple of great blogs, and I’ll try to post twice this next week, so keep an eye out over here for some exciting things. And thank you all so much for you love, support, encouragement, thoughts, prayers and kind words. I really do appreciate all of you and the love you send to me. I hate being sick, but I’m grateful to be a part of this amazing spoonie family!

Kayla

Taking Care of Yourself

These past days, I've been reflecting on Lady Gaga's statement of her struggle with fibromyalgia and emotional problems, which got me thinking about my very own experience with fibromyalgia and arthritis. And the more I read about her own struggle with her own words, and about all the media coverage, the less I understand the need of humans to differentiate between physical and mental conditions. Because let's be real folks, one thing reflects in the other, and so. 

I've had fibromyalgia for 6 years now, and it all started after I officially got diagnosed with depression. I was just adjusting to this last condition, and some weird stuff started to happen. Suddenly I felt very tired, I constantly overslept, the pain all over my body was unbearable, I started getting bruises and frequent hair loss and lack of mobility. I asked my psychiatrist, who send me to a rheumatologist and she confirmed I had this thing called fibromyalgia. 

With arthritis it was different. I've just arrived from a trip, and I had this horrible bronchitis, laringitis and all those itis. As I took care of myself, I found myself bend over in a 90 degree angle because of a sudden pain that stroke my spine and neck. Later, I saw how my hands, my wrists and fingers swell up and got red and hot and huge. As I got ready to write some letter, I saw I couldn't bend my fingers to hold a pen, and that I had no strength at my hand whatsoever. This wasn't fibromyalgia. This was new. This was a different kind of pain.

I went to the doctor and he told me I had reactive arthritis, but that I needed to brace myself because in a percentage of the population, with previous autoimmune conditions and musculoskeletal stuff, it tends to stay and it would become a chronic condition. Otherwise, if I was lucky and normal enough, the antibiotic will get rid of it.

I knew right then that I was in the tiny percentage that will get chronic reactive arthritis. My health had never been my best, and I just knew. God, I even had gotten lice that were treatment resistant, and didn't left like for two months. And as a prophecy, I write this 9 months later with arthrtis.

And I've seen that depression and anxiety make it so much worse. I've realized that when I'm in crisis, I have to wear a cane next day and I can't practically use my arm or hand. I've seen that when my grandpa got a terminal cancer diagnosis, I limped for a week. Just today, I had a fight with my brother and I'm writing his article single handendly because my left knuckles are the size of grapes. 

So yes, probably non of these past diagnosis I've talked about would be cured from here until my death. But I know we can make our lives easier by taking care of our mental health, of our emotions, of our thoughts and our interactions. If people or situations are way too hard to handle, you've gotta be cautious and remember, your body will show that up. You've gotta remember that your mental condition is way too precious, and you only get one. Heaven knows, sometimes you don't even get one. So feel free to avoid people or situations that will make your health worse,because the illness by itself is hard enough, for you to add things up. Don't feel bad, and even, encourage yourself, to avoid contact with situations and people that exhaust you emotionally. Screw people who will criticize you. They aren't the ones living with a chronic illness. You are. And kid, as the odds and medicine aren't on our favor, we've gotta watch for ourselves. 

Mariana

Meet our new blogger - Mariana!

Hello friends,

My name is Mariana Solarte, I'm a 23 year old colombian, who will be getting her psychology bachelor in a few months. I decided to became a mental health advocate and writer last year, when I was diagnosed with chronic major depressive disorder, in addition to the anxiety  and suicide ideation I had battle my whole life, fibromyalgia for the past 6 years and arthritis for 10 months. When I saw that pretty much every condition I had didn't had a cure, I got rid of all those "I'll do_________ when I get better and normal again" and replace them with "This is what we've got, what are we gonna do with this kinda broken, kinda dark, but hopeful life ahead of me?" I started writing in a personal blog, called Beyond the Diagnosis: Fighting the Stigma, and then for The Mighty and became a suicide prevention advocate for TWLOHA. So, pretty busy, life changing last year. I'm very honest about my pain, but very decided to keep making the best out of it and never letting my conditions define who I am and who I'll be. I adore my family (specially my 3 year old godson), sunflowers, the ocean, any kind of candy and sleeping. When I'm not writing, I'm normally napping. Hope to help you, and learn from all of your stories. I'm here for you, and I'm proud of being part of this!

IG: beyonddiagnosis

FB page: Beyond the Diagnosis: Fighting the Stigma

Is There a Better Way?

So, for today’s blog I wanted to talk about the struggles of being born with a disease/disablity verses being diagnosed at a later age. I saw a message thread the other day where this exact topic was being debated, and there were very strong opinions for both sides. So I thought today would be a good day to talk about it. Now, I don’t have any facts, and I only know what it’s like from one side, but I still think I’ll discuss it here. For those of you who don’t know, I grew up healthy. (You can read my whole personal story a couple posts back on this blog.) I ran track in junior high, I danced all through high school, I was working as a security guard and going to police academy when I started getting sick. So I had a very normal and active childhood. Sure, I got sick once in awhile, but nothing chronic or long lasting. And depending on which day you ask me, I’ll tell you a different story about whether I’m grateful for that or not. On a basic level, I’m very grateful for the opportunities I had growing up. I’m so glad that I lived such an active life. I have amazing memories from late-night dance group parties breaking down the stage after weeks of performances and hours of fun on the bus going from track meet to track meet. I feel like I lived a full life through my junior high/high school years. There are memories that I will have for the rest of my life. I’m grateful for the 5 years I spent working as a 911 dispatcher and for the friends I made and experiences I had. Some of those experiences helped shape me into who I am today. I literally listened to a lady being stabbed to death while she was on the phone with me waiting for officers to arrive. I was lucky enough to be able to meet her months later when she stopped by to thank the officers who got there with less than minutes to spare and the dispatcher who stayed on the phone with her so she knew she wasn’t alone in what she thought was going to be her last minutes in life. That experience is something that changed me permanently and helped shape the way I see things day to day. I had several experiences like that and I am forever grateful for those. I am grateful that I was able to go through police academy. I was half way through when I started getting sick, but some of those friends I made are friends I still have to this day. All of those things are things that I am grateful to have as my memories and experiences. So why do I sometimes say I wish I had been born sick instead of getting sick later in life? Because I know what I’m missing. I feel like I was living a full life and then lost all of that. I miss being able to work a full time job and go to school. I miss being active. I miss having these amazing life experiences that only living a full life can give you. I sometimes wonder if it wouldn’t have been better for me if I had just always been sick. If I had grown up sick and never had the opportunity to do these things, I wouldn’t feel like I was missing out on so much. I wouldn’t know that things could be better because I never would have experienced that. And then I think about not having had the opportunity to have those experiences and I start to think that it is better that I got sick later in life. If I had been born sick I never would have had the chance to be on sports teams and groups or have had the amazing job opportunities that I had. You can see how I go back and forth about which side I think is best. And yet I feel like a hypocrite saying that if I had been born sick I would have missed out on things. I’ve talked to several amazing individuals who were born with chronic illnesses and have had them their whole lives, and they don’t feel like they’ve missed out on anything. And the truth is, they haven’t. They’ve lived just as full of lives as I have. They’ve had opportunities in their lives that they feel people who didn’t grow up sick missed out on. I have a friend who was in certain clubs at school because they weren’t active, etc and she made the best memories in those clubs with her friends that she still has today. She feels like if she hadn’t been born sick, she never would have joined those groups. Her family is active and she believes she would have been active too had that been an option. But because it wasn’t an option, she joined non-active groups and feels like she’s the most blessed because she did. I don’t know if any of this is making sense. I think it’s hard to explain because it’s hard to know. Fortunately for most of us, we were either born sick or became sick later in life. I know a few of you were born with some illnesses/disabilities and gained more later on, but most of us are in one column or the other. So how can we compare? I don’t think we can, and I don’t think it’s fair to try. But just because we aren’t comparing doesn’t mean the questions don’t cross our minds. On days when I so desperately miss working full time and being in the police academy, I find myself wishing I had been born sick so I wouldn’t know what I was missing out on. But on the days when I enjoy thinking back on the amazing memories I have, I am grateful that I had the opportunity to live life the way I did for so long. Which way is better? There’s not a right answer. All opinions on the subject are valid. So what do we do? I guess the best thing to do is to be grateful for what opportunities we had and try not to compare yourself to others who are ill. Everyone has a different life/illness story. No two people are the same. Even two people who were born sick and have dealt with illness their whole lives will have very different stories and opinions. When we’re missing out on something we used to do, or wishing we would have had the opportunity to do something we never were able to do, just remember that things are ok. A small part of everyone wishes things in their lives were different. I think the most important thing is to remember that everyone is different. We all lived different lives, had different opportunities based on our surroundings and will continue to live our own lives in our own ways. Kayla

Disabled and Facing Devastation

I’ve been thinking about what to write this week, and my thoughts keep going back to what is happening in Houston and how that’s affecting those with disabilities or disease. For those of you who don’t know, Houston has been inundated with flooding. Hurricane Harvey made landfall a couple of days ago and record amounts of rain have fallen on and around Houston. We’re talking feet of rain in less than a week. They’ve had creeks, dams, and levies break, spilling over into neighborhoods. They’ve had thousands of people displaced and thousands who were stranded and had to be evacuated. All of these people are now spread throughout the city in different shelters and makeshift refuge sites. Here’s something that a lot of people don’t know. Weather can have a direct affect on symptoms of a disease. I have MS, and the heat literally makes me ill. I don’t even have to do anything in the heat. Just being outside or in a car on a hot day makes me sick. I get shaky, nauseous, my hands and feet swell. There are days when I’m literally trapped in my house because I don’t have the energy to go out in the heat. Different diseases and disabilities have reactions to heat, wind, cold weather, etc. It’s something that we can’t control but that we face daily depending on where we live. To say that the weather in Houston is negatively affecting so many with disabilities would be an understatement. Stress also plays a big role in aggravating symptoms of disease and disability. Any kind of stress can be debilitating. I can only imagine the stress that the people of Houston are feeling right now. They knew a hurricane was coming their way...stress. They then are being inundated with epic amounts of rain that is threatening their homes...stress. Their houses begin to get flooded and they are needing to leave their homes immediately...stress. They then are being evacuated, some walking through waist deep water and having nothing but the clothes on their back, heading to absolutely who knows where...stress. They are now living in refuge setups or convention centers with thousands of other people...stress. The thing I’ve been thinking about is this, what if this was me? This is just my situation, but think about this and try to understand what just one person would be facing in a disaster. I sleep with a cpap every night. I have severe positional sleep apnea and get very sick if I don’t use my cpap. Would I have left my flooding house in a hurry with that? What about my medications? I take 7 pills every morning, 4 in the afternoon and 18 at night. Would I have been sound of mind enough to grab those before evacuating? I use crutches to walk. Now, I probably would have taken those with me, but can you imagine walking through waist deep water while using crutches? To say that would be difficult is a huge understatement. And then say I made it to an evacuee site. The lucky people have cots to sleep on, but many are sleeping on the ground. I would maybe be OK to sleep on a cot, but only for a night or two before I literally wouldn’t be able to walk because of the pain. Now, say I was stuck sleeping on the ground. I wouldn’t be able to. I can’t get up and down off the ground, let alone sleep there. And it’s not because I “need a comfy bed” or something like that. I literally just can’t get up off the ground and if I slept on something hard like the ground or a cot, I would not be able to move my legs after a very short time. Imagine if I lived in Houston and that was my situation. It makes me sick to think about if that happened. Now think of all the people who are actually living this situation as I write this. My heart breaks for them. I saw a picture of a nursing home waiting to be evacuated. It was so sad. There were older people sitting in their wheelchairs in water literally up to their chests, just waiting for boats to arrive. Imagine the people who have oxygen and can’t get around easily. I follow a girl on Instagram who is on 18 hour feeds with a feeding tube. I follow another girl who has a picc line. Those are things that require a lot of medical supplies. They would be lucky to evacuate their houses with all of those supplies, and even luckier if they were able to find them at the evacuation centers. They’d have to go to the hospital and hopefully get their in time and then if they did get their in time, hopefully the hospitals have the necessary supplies. These seem like such simple things on a day to day basis, but when you don’t have them, you aren’t OK. You need to eat, to breathe, to be able to take your medications. These are things that people take for granted day to day, but not when you’re the person who needs them and is without them. I hope the message you’re taking from this is one of understanding. Their are stories all over the news about the difficulties the people in Houston are facing, but I feel like so many of the real stories aren’t being told. And it’s not just people who are sick. Think of the people who have infants. Do they have diapers, bottles, milk? Think of the people who don’t have diseases or disabilities but who are sick. Just last week my cousins were sick, 3 of them had the flu so bad they couldn’t get out of bed and the baby had croup. Think of them having to find medical help. Do they get help as soon as the others who have major diseases? I’m just heartbroken thinking about all the “what-if’s?” for the thousands of people facing such a devastating future. And while I’m thinking about every one who is suffering, my thoughts and prayers are especially with those living with chronic disease or disability and having to deal with all the added extra stress. To all the spoonies out there, PLEASE know that you’re not alone. We are here for you. There is a whole community praying especially for you. Don’t give up Houston. We will stay strong for you as long as you need! Kayla

We All Need Something to Lean On

Today I want to talk about crutches...both literal and metaphorical. When I first started needing crutches, I was hesitant. I didn’t mind using them around the house, but I wasn’t really fond of using them in public. I was using real crutches (the under the shoulder kind) and I hated the inevitable questions (“What happened to you?”), hated the physical effort it took to use them (my arms would be so tired) and hated being “that girl” who needed something to help her. Part of me didn’t want to accept that I needed help to walk, something that comes so easily to everyone else! I would avoid running errands because I felt like I was always being looked at. I avoided events and social gatherings because I didn’t want to have to tell people what was “wrong” with me over and over. Finally my doctor prescribed the forearm crutches and it was better than I thought it would be. My arms wouldn’t get as tired, and I started agreeing to go out more. I’ve noticed that with the forearm crutches I get the “Whats wrong with you?” question a lot less. I think people see those type of crutches and assume it’s not a broken leg or something like that. It was about that time that I finally started to accept that I needed help, and also started to appreciate the help they gave me. I’ve also learned to appreciate the help that they are. As much as I resisted them, I really needed them. My legs are so weak and shaky, but with the crutches I feel more sturdy. I feel like I can do more with them than I could without. And I don’t feel embarrassed by them anymore. I have really learned to embrace them. I’ve decorated them with a colorful cloth wrap and I think they’re really cute. I know that doesn’t matter to most people, but it matters to me. Now lets talk about metaphorical crutches. We all need something or somebody to lean on. And it can be just as difficult to accept those crutches as it is to accept the physical crutches. Admitting that we need help or support can be one of the hardest things we face. I felt like it was going to be an imposition to those around me. I felt like people would judge me for needing something with me to help comfort me. But I’ve also learned that those “things” can be just as important as the actual physical support that we need day to day. Metaphorical crutches can be anything. I have a necklace that says “You are my person” and I wear it every day. It is a comfort thing to me. It is my constant reminder that my sister is my best friend that she is there for me every hour of every day, no matter what. I forgot to wear it one day and I almost had a panic attack. My mom didn’t understand why I wanted it so badly, but it’s my thing. It’s that thing that I keep with me to remind me that I’ve got this. That’s the thing about metaphorical crutches...they don’t have to make sense to anyone else. They are for us. They are what helps us handle each day, and that’s what matters. I hope that we can all learn to accept these “things” to lean on. When we finally accept the things we need to help us get through each day, we become stronger and more confident. It’s these things that help prove to us that we can get through each day. It doesn’t matter if you need crutches to help you walk. What’s important is that you can still walk. It doesn’t matter that you need a silly “thing” to help you get through each day. What’s important is that you are making it through each day. Find hope in the things you lean on, and know you’re not alone. We all need something to lean on! (There’s something I’ve been thinking about as I’ve been writing this. I don’t want to come across like I know everything. I sometimes feel like a hypocrite. It’s not that I don’t think I’m qualified to be discussing living disabled with other people, because I have a lot of experience at it. But I don’t ever want to sound like I think I know everything or have it all figured out, because I don’t. I’m here to learn as much as anyone else, and I’m just grateful for the opportunity to share what I’ve already learned to hopefully help or encourage others.) Kayla

My Story

I thought that for my first post, I would share my health story with you all. I grew up relatively healthy. I ran track as a teenager and I was a dancer in high school. I had some health problems (I had my appendix and gallbladder removed in high school) but I recovered quickly and got back to life. About a year after graduation I got very sick with pancreas issues. The opening to my pancreas had grown closed so no fluids could get in or out causing me to be very sick. I spent a lot of time in the hospital getting fluids, medications and tests. I spent approximately 9 months of 1 year in the hospital. I even turned 21 in the hospital. But the doctors eventually figured out what the problem was and I had a surgery where the doctors basically cut the opening to my pancreas wide open and then sewed it open so it wouldn’t be able to scar closed again. After a couple weeks in ICU and a couple more in the hospital, I was finally better. But the problem was, I had been taking serious pain medications for approximately 2 years and my body was dependent. I started to suffer withdrawals. After consulting with my doctor, I spent 2 weeks in an inpatient rehab facility getting my body used to not having medication. This was a very difficult time for me. I felt very guilty that I had let my body become dependent on these medications. But after rehab and some time, I got over those issues too. I was finally healthy. I started working as a 911 dispatcher for a large police/fire department and I was also working as a security officer. I was going to school studying criminal justice and was half way through the police academy. I was going to be a police officer. That was my dream. I worked in jobs to prepare me for law enforcement and I took every possible criminal justice class I could. My dream was coming true. My life had a plan. I was going somewhere. In 2010 I started having problems with my lower back. I completed the first half of the police academy and decided to take a break before starting the second half so I could get my physical health back on track. But I kept having debilitating pain in my lower back that prevented me from walking or moving for a week or so at a time, but then I would feel better for several weeks and then I’d have another “episode”. In February 2012 I had an episode that didn’t go away. After an MRI it was determined that I had ruptured a disc in my lower back and needed surgery. I was put on bed rest for 3 weeks before I was able to have a back fusion surgery where they put a metal plate and 3 screws in my back. It took some time to heal from that surgery, but it eventually happened. But I continued having weakness in my legs and we couldn’t figure out why. My doctor said I had healed completely and normally from my surgery, but I was still having problems. I went to see a rheumatologist but they cleared me from having any problems they could take care of. Then I went to see a neurologist. During this time I started having a lot of pain in my neck, but I thought it was just a pulled muscle. I told the neurologist all of the things I had been through and all of my current symptoms, and she decided to test for MS (Multiple Sclerosis). One of the tests for MS is an MRI of your brain and cervical spine. This happened in early 2015. When my doctor got the results back, she immediately stopped treatment and sent me back to the neurosurgeon. I had 2 ruptured discs in my neck. After a lot of fighting with my insurance company, I finally had neck surgery in the fall of 2015. I had to have 2 discs in my neck removed and replaced with artificial discs. After this surgery is when my neurosurgeon diagnosed me with DDD (Degenerative Disc Disease). This diagnosis meant that the other discs in my back and neck will continue to slowly deteriorate and I will eventually need more surgeries, fusions and/or disc replacements. While I was dealing with recovering from surgeries, I kept getting weaker and weaker in my extremities. As soon as I was cleared from the neurosurgeon, I was sent back to the neurologist. I went through an array of tests including balance, eye sight, spinal tap, blood work, and the list goes on. After all the tests, it’s been determined by 4 doctors that I have serologically-negative MS (Multiple Sclerosis). Serologically-negative means I have all the symptoms of MS, but the tests show negative (patients can have the disease sometimes for 5-7 years before the tests show positive). Last year I started throwing up every time I would eat. We kept a list of everything I ate and every medication I took, and nothing was the “culprit” for making me throw up. We did a swallow test, several intestinal tests, a cat scan, an xray and blood work and the doctors finally diagnosed me with gastroperisis. It’s been hard to deal with. I have to drink a lot to stay hydrated (I get easily dehydrated and even spent a week in the hospital because of dehydration), so having a disease where the stomach doesn’t empty very fast makes drinking a lot difficult. I also take about 5 medications to keep my stomach working normal. And through all of this, I was tired ALL THE TIME!! I did several blood tests and visited several doctors, and was diagnosed with chronic fatigue. The problem with chronic fatigue is that there is no cure. There is no medication to make it better. I just have to deal with it. I take a lot of naps and deal with being tired pretty much all the time. It also has been a difficult disease to deal with. My social life has changed drastically since I am so tired. I don’t go out very often and I go to bed very early. I am just physically exhausted by early evening. So over the course of the last 4 years I received all 4 diagnoses and applied for permanent disability. After 2.5 years of waiting (and not working so I was reliant on my parents financially for everything) I was finally awarded permanent disability last summer. It was such a blessing. I remember opening the letter and reading the determination. I was elated. I started crying because it was such a blessing. I couldn’t believe that after all I’d been through, I was finally going to have my financial independence back. I thought I was so happy. But it turns out that it’s been a hard pill to swallow. It was the final reality check that this is my new life. I will never be a police officer. I will most likely never work a job again. It’s been difficult, but I’m at a place of acceptance. I still have hard days, but I’m ok with my life the way it is right now. I’m disabled. I’ve accepted that. I have to live at home because I need help with daily tasks and I’m unable to drive, but I’ve accepted that. (Luckily, I have amazing parents who help me and are so patient with me and meeting my needs.) I am back to taking a LOT of medications, and some of those are the same medications I became dependent on before, but I go to a pain clinic and have amazing doctors who help me and keep a watchful eye over what I take. My life is completely different than what I thought it was going to be, but I’m ok with who I am and what my life is. Do I get offended when someone at the store gives me a dirty look for driving one of the riding carts? Sure. Do I get discouraged at night when I have to take ALL my medications again? Of course. But I know how blessed I am to be where I’m at in my life. I’m Kayla, I’m disabled, and I’m ok with that. Instagram @kayda_a and @disabled.not.unable