I can’t believe it’s been over a year since I last posted here. A few months ago I wrote a long post talking about some of the upsides of having a chronic disease and how it’s positively changed my outlook on life.  The day after I finished it I opened it back up and started to edit it. I accidentally deleted the whole thing, couldn’t recover anything, got really mad, didn’t rewrite it and well here we are.
     I haven’t had the heart to start rewriting it because just a few weeks after that happened I had a multiple sclerosis relapse that I am yet to fully recover from and I haven’t been feeling quit as positive about my outlook on having a chronic disease. 
     This explanation is going to be a long one that I think I’m writing more for myself than for anyone else to read so please bear with me if you do read all of this.

                                                   This all started about 6 months ago. 


     I have a long history dealing with anxiety and depression, I had been relatively anxiety free for a few years and had been off of antidepressants for the past two years. Out of no where I started getting strange out of the blue anxiety and did not want to let it lead back to the constant anxiety I used to deal with. I wanted to nip this in the butt quickly and went to a random doctor I had never seen before and asked them to put me back on Prozac. They agreed to give it to me and I started it right away. Now the first time I started Prozac was so long ago I don’t remember the initial side effects, but man I don’t think they were as bad as they were this time. After just a day of taking it I started having almost 24/7 panic attacks that continued for a week. I couldn’t take it anymore and had to stop taking it. I also learned to maybe not go to random doctors I don’t know and convince they to give me medicine.
     This is where the multiple sclerosis nonsense starts happening. Sometimes when I get stressed for long periods of time weird things just happen to my body. Something that often happens is I lose feeling in one of my feet, usually my right foot. So as predicted, that’s what happened. Now normally this clears up after a few days and I have a day or two of minor discomfort as the feeling starts to come back. Oh boy, not this time. This time my foot stayed numbed for what I think was weeks and when the feeling started coming back the pain was in a whole different ball game.
     I dealt with the horrible pain for days before deciding to contact my neurologist. By horrible pain I mean waking up in tears daily from how badly it hurt. I don’t want to get into details of what happened with my doctor because honestly it’s not worth it, but essentially after a few days of calling and being ignored by their office I was eventually told they couldn’t see or help me despite me crying on the phone for help. After they told me this, my boyfriend (who has been an absolute loving and amazing saint through all of this. Really words can’t express how thankful I am for him) took me to the emergency room in hope of some finding some answers. 
     They ending up deciding hop me up on pain killers and admit me for testing. After an MRI showed a new lesion on my brain they kept me in the hospital for five days to administer two daily doses of intravenous steroids. This was a super boring five days but the pain and the numbness in my feet slowly started to disappear. I couldn’t wait to get home.
     The happiness of being home quickly wore off within an hour of getting there however. My mom picked me up from the hospital and brought me home to my apartment. The first thing I wanted to do was shower. I had ordered a shower handle to stick to the shower wall to help steady myself since the feeling in my feet was still a bit off. I tried for five minutes to attach it to the wall and the moment I gave up in defeat, I just lost it. My mom was waiting for me in the living room and I hobbled down the stairs as best I could bawling my eyes out to come find her.
     My entire body ached (I’m sure from laying still for five days), I was furious about how long this healing process was taking and I was just completely physically and mentally exhausted. I had hardly slept during the hospital stay out of the anxiety of hating being in the hospital and also the annoyance of a nurse, who I know was just doing her job, coming into the room every few hours in the middle of the night to poke and prod at me. I calmed down eventually and was thrilled to finally sleep in my own bed.
     The next day though started a whole other nightmare. While I was in the hospital I was never alone. My amazing parents, boyfriend and friends were always visiting me and took turns spending the night with me. I took two days off work when I left the hospital and it was my first time being completely alone. I thought I would enjoy finally having some alone time but damn did my brain have other ideas.
     I fell into a horribly deep depression, I honestly don’t even feel comfortable saying how deeply it ran. But it made me terrified of being alone. I was at the time living with my boyfriend and a roommate, so between the two of them there weren't huge gaps of time I would be alone at the apartment. But during those short gaps, or god forbid long gaps, I was just frozen. I really don’t even know how to describe what would happen, but it was awful.
     After a few days or weeks the pain in my feet started coming back. We did a follow up MRI which showed no further lesions, which was great news to hear, but that news did not stop the pain. That’s when the great medicine hunt of 2018 began. It was a few months worth of trial and error as my neurologist, who was just great, tried to find a medication to help with the nerve pain. This was an extremely difficult process for me. Each medication would take a few weeks to fully kick in, so I would often have to wait in pain for a few weeks only to find the medication wasn’t going to work for me. 
     But eventually we cracked the case and everything started to fall together. We finally found a  combination of medications that have now nearly eliminated the nerve pain I was feeling in my feet. I was put on Lyrica for the nerve pain and Cymbalta as an antidepressant. Cymbalta actually also helps with nerve pain and the combination of the two have been amazing for me both physically and mentally. Speaking of mentally, I started seeing a psychologist and a psychiatrist and both have been amazing. I was so hesitant to start another antidepressant after the nightmare I had with the Prozac previously. But the Cymbalta had no side effects and I think it has really helped with my anxiety.     
     I know I have said it before and I’ll say it again, but I think everyone should see a therapist at least once in their life. It’s just such a great relief to speak to an objective third party about your life and thoughts. I don’t usually like to talk a lot about being sick because I don’t like to feel like a burden to anyone. I know this is entirely in my head and no one is being burdened by me talking about it but it is still difficult for me. It has just been really great being able to dump all of my “medical baggage” on someone guilt free. 
     I have gone through phases in my life where every five or so years I feel the need to see a therapist. It is usually a long battle of finding one who first accepts my insurance and also is someone that I like. I think it’s such a waste of time to continue seeing someone who you just don’t connect with or feel comfortable with. As frustrating as it can be, the hunt for a therapist is always worth it to me, I don’t think that’s something you should ever just settle with. I got lucky this time around though and the first therapist I saw was right off the bat someone I really connected with. I still have some things to work on but I think I have finally found the perfect combination of medication and therapy for my anxiety and depression. 
     So, there is a happy ending to this story. Things are looking up for me both physically and medically. There have been a few speed bumps but damn it, I’m getting there. 

Oh and I’m getting married.

     My journey through school has been a long and strange one since being diagnosed. I never had any trouble with classes in high school, but college turned into a whole other ball game. I was diagnosed with MS when I was 18 during my senior year of high school. One of my diagnosing symptoms was that by the time I got home, I couldn't remember a lot of what teachers had said. At the point, I didn't realize that MS could cause cognitive issues and was lost on what the hell was going on with my brain.
     I don't talk a lot about what it was being diagnosed in high school. In some cases I feel like it was the perfect time for it to happen. When you're 18, your invincible. No 18 year old wants to think about chronic diseases let alone believe that they could actually effect them. It was kind of just this weird thing that was happening to me. I didn't take the diagnosing process to seriously, though that was I'm sure nothing more than a coping mechanism. I almost completely distracted myself from the process. I just had to see a few doctors every once in a while, other than that I had completely detached myself from it.
     But then it was real, and this the part that I wish came at a different point in my life. Either when I was much younger or much older, just not then. It was a really self deprecating and accusatory time in my life. I thought almost everyday about what I could have done differently that would have prevented me from getting MS. Maybe if I had never smoked pot or never drank it wouldn't have triggered whatever started this, or maybe this was happening because I was recovering from an eating disorder and that must have been what messed up the chemistry in my brain. It just didn't seem like a random thing, this was personal and I didn't know what I had done to deserve it.
     I was pissed, this was my senior year, this was supposed to be fun. I remember once I was sitting in Engish class and started having a panic attack, because I was I'm sure probably thinking how it was my fault, and I just left. Didn't say a word just got up, grabbed my things and left. My school had a lot of on campus police officers and a guard in the front of the parking lot to make sure no one was leaving that shouldn't be, I don't remember if that guard was there or if I even looked. I just got in my car and drove, I drove in circles until it was the time I should be coming home from school. This eventually became a regular occurrence.
     I skipped a lot of class, and no one ever questioned it. Teachers had seen the doctors notes and knew what was going on. They either thought I was in doctors appointments or was sick or God, they were just giving me a break. I felt like if I had to deal with this crap, I was going to milk it. I do remember though having just one class that I would ever feel like going to. It was the class for my school news paper. It was only an hour long, which in the scheme of a day is nothing, but I remember just always looking forward to it. It was an hour that I just didn't have to think about it, it was an hour for whatever understood reason no one asked me about it. I remember the teacher being the only one I had I had who wouldn't treat me like someone outside of my diagnoing process. The only one who would genuinely ask me about class work without expecting the response of "I can't do it because I'm sick." It was just a very accepting space, and I don't think I ever thanked him for that.
     Most kids were skipping school and smoking or going to the beach, but all I was doing was driving in circles and hanging out in parks. A few times a week I would leave school, drive in circles for an hour until my friend was awake, then I would pick him up and we would go and sit in parks. For hours, just sit in parks. It was exactly what I needed. I was grasping at any opportunity to not have to talk about it. I felt really jipped at this point, I was throwing up and sick all of prom night (and not for the fun reason), I missed my high school graduation, I missed being excited to go away to college, but I didn't let that stop me from going.
     I was thrilled to be going away to college, looking forward to being around people who wouldn't ask me how I felt all the time, but it didn't go as I planned. When I got to college it was like someone else had taken over my brain. I was studying in the same ways I always had, yet for the first time in my life, I was failing classes. I began to slump into a deep depression and had a difficult time coming to terms with these new cognitive issues. I stopped going to classes, it began to seem pointless to show up. I started having horrible panic attacks that would make studying even more impossible. I spent almost the entire year held up in my dorm room, unable to get my head around anything. As expected, I failed every class I took that year, and decided I needed to come home.
     The next year I decided to continue taking a full load of classes, but was going to take them all online. I had still made no changes to my learning style and expected things to go smoothly. Well, they didn't. I would read a paragraph from a text book and instantly have no recollection of what I just read. I couldn't keep an attention span long enough to watch a lecture and things started to feel impossible again. This year did not go much better than the last and I began to think that college was just not going to be a possibility.
     I took a semester off to just give myself a break and figure out what I really wanted to do. I had always intended on graduating from college and had no idea it would become such a disaster. It was then I really took a step back and figured out how I needed to do things. I started taking just a few classes at a time, I had learned that a full course load was just not an option for me. I slowly got through my AA by the time I was 25. Most people would not be that proud of not finishing their AA until they were in their mid twenties and at first I as embarrassed, but I was damn proud of myself. Getting that far in my education was one of the hardest things I have done. My mom framed my diploma and people have thought it's a joke to get such an insignificant thing framed. But I worked my ass of for that, and I don't care how insignificant it seems, I am proud.
     At this point with my AA finished, I have taken on the challenge of finishing my English degree. I am back to taking classes online because that's just what works best for me. I don't need to remember everything someone said to me in a classroom hours before, if I forgot anything it's still all there on the computer. I am still only taking a class or two at a time, I'm not taking any right now because I haven't been able to figure out to balance my current job with school. But, I'm not embarrassed by that. Maybe I wont finish for a few years and there is nothing wrong with that. I don't think there is anything embarrassing about wanting an education. It doesn't matter if you are 30 in a classroom full of 18 year old, there's no age limit on an education.

     I never thought I would ever say that I missed working in retail. It's not so much retail that I miss, but more so human interaction. I'm currently working at a very small office with only 7 people. I'm sure they are all fine people, but we are on the phone all day and hardly interact with each other. I think its just been bumming me out lately that I don't interact with anybody for nine hours a day.
     Sure I'm talking to people on the phone all day, but that is entirely different than actually talking to someone. People get the same superiority complex that they get when speaking to someone over the internet. Something about not being able to see the person your talking to seems to make it ok to talk to them like they just stole your lunch money and kicked your dog. It's just easy to disconnect emotions when it feels like you are just talking to a machine. Which really is what it feels like when your talking to someone on a computer or over a phone sometimes. You are physically talking to a machine, it makes it hard to realize there is a person operating that machine.
     I'm sure I've talked about this on this blog before, but I just really enjoy people. I'm sure I complain about them all the time in past retail jobs, and just in day to day life. But I think humans are the most interesting thing in the world. Consider your entire life, all of the people you know, the things you've learned, the things you've felt, the things you love and hate. Now consider that every single person in the world has a completely different image in their mind when they think of the same things. Its like our world is full of an infinite number of smaller worlds inside of every persons head, and I just think thats really neat. Even when I deal with someone who is acting like an ass, I still enjoy just thinking about how different their world is from mine.
     It's almost like this job has been training me though to stop interacting with people though. I noticed I hardly ever even text anyone anymore, I think just because I am so used to not talking to anyone all day. So if you feel like I've been MIA lately, please just keep prodding me and try to crack my post work shell. I leave work with the full intent of talking to everyone and anyone I can lay my eyes on. But then by the time I get home, I'm just tired. My post work routine for the past few days has been to take a shot, eat a pickle, call my mom and hide in my house. For that at least I'm glad I live with my boyfriend and three other guys. It gives me a built in group of people I can talk to with out having to to my pajamas off and interact like a real person.
     Usually while I'm at work I spend a lot of time planning all the things I'm going to do when I get home. But, I get home and generally none of it happens. My body and brain are just not cool with this whole 9-5 thing. By the time I get home I have no energy left and then the weekends are generally spent catching up on all the things I didn't have the energy to do.
     I have had a hard time coming to terms with multiple sclerosis fatigue in that sense. It infuriates me that sitting at a computer all day makes me so tired. I feel like I have no reason to by tired and try to proceed as normal but then my body reminds me, hey girl your exhausted. I've been reading a lot about MS fatigue lately, hoping someone on a foreign blog will have the cure for it, but I haven't found that magic pill yet. It's just something that I need to learn to except, sometimes this dumb disease just makes you tired.
     Which seems so stupid, everyone is tired. But its a special kind of tired. I have actually been brought to tears reading forums of people with MS describing their fatigue and then describing how not one person in their life understands it. But then it is so nice to be able to see that there are people out there who's little personal worlds are similar to mine.

     Oh hi Internet, it's been a while. My life the past few months has sort of been an endless blur of quitting jobs, being fired from jobs, literally being allergic to a job, sulking and finding new jobs.
     I had been working for 5 years at a customer service retail job. It wasn't the worst job, but it was by no means the best. It was stressful at times and underpaid as is any retail job. I had been wanting to leave for a while but was tipped over the edge when new management began to treat me and my chronic disease as a burden. It is extremely painful to feel unwanted for something you have no control over. 
     The other difficult part was medical benefits. I interviewed and was offered jobs at a hand full of places that sounded great, but none of them offered benefits. Not having health insurance just isn't an option for me. It made it uncomfortable having to decline job after job.

     I vividly remember the turning point when I had just started a new medication. My entire body felt like it as on fire and my throat started to itch and feel tight. I called the drug company to ask about side effects and they told me it sounded like an allergic reaction. I remember watching my sweetheart of a supervisor telling management that I needed to leave to seek medical attention, because well I don't know all signs seemed to be pointing to my throat closing, and watching the manager roll his eyes and throw his hands up in the air. I instantly decided this wasn't an environment I needed to be in. P.S clearly this seemingly allergic reaction didn't kill me, it turned out to just be normal side effects. I had a real shitty few weeks adjusting to the new medication but now its actually the most successful MS drug I've been on. I'm sure I'll do a post someday about how amazing it is to take a pill instead of a daily injection.

     The process of looking for a new job at that point was a nightmare. It became a moral dilemma of checking yes, no, or I do not wish to answer when applications asked do you have a disability. Yes I do have a disability, no I don't feel like I do and I also do not wish to answer. I legally can not check no, I don't want to say yes and checking I do not wish to answer seems the same as pressing yes.

     At this point in the blog I wrote out a few paragraphs explaining and bitching about all of the different jobs I've gone through. I decide to delete all of it. It was just a lot of unnecessary negative energy. I realized I don't need to publicly validate myself for all these jobs. But long story short I guess it was just a weird few months.

     I will say though one of the most difficult things for me at all of these new jobs was relearning how to learn. When I first started my customer service retail job, it was at the beginning of MS causing cognitive issues for me. So my learning process wasn't hindered yet. It is extremely difficult for me to catch on to new jobs and systems as quickly as I am expected and hoping to. It's extremely frustrating completely understanding something one day, and then hardly remembering it the next. Even more frustrating then that though is the reactions of my peers at work looking at me wide eyed and confused wondering how I didn't know these things yet.

     It constantly feels like I'm being talked down to because of it. I think talking down at someone is one of the most disrespectful things you can do. I'm sure a lot of times no one means any harm by it, but seriously think about the ways and words you use to speak. I consider almost every thing I say before it leaves my mouth. That may be a reason I'm so quiet, because by the time I've worded something the moment has passed. A lot of people do just have harsh voices they are unaware of, and I guess I am a little sensitive. But it has been become an extremely difficult part of working now. 

     I've finally found a job thats manageable though. It pays me enough to, you know survive and stuff. But the thought of worrying about maintaining a job in the brain of chronic disease is very much still present. I've only been at this job for about a month and still daily I have moments of "why can't my brain figure this out yet." This job also does not have health insurance, another thing that keeps be constantly worried. I am currently on a cobra plan from my original jobs health insurance, but it will end in about four years. Which I mean is great, thats a damn long time to keep insurance after you've left a job. But I know I can't stay at this job for years to come because I will eventually need to leave for a job with insurance. 

     I feel like I could go off on a pamphlet length rant right now on how tiring it is to have to revolve so many things around health insurance. But, I'll save that for another day. 

     I am very grateful for the job I do have though. Despite the weird few months, this is the best I've felt both physically and mentally in a long time. 

     I've been learning a lot about my limits lately. Sometimes if I'm feeling well, which is more times than not, I forget that I have a chronic disease. This isn't necessarily a bad thing, in fact I think its a pretty damn good thing. But it's not such a good thing when I have decided to stay out all night multiple nights in a row and forget about the physical consequences.
     I missed out a lot on my early twenties. I was diagnosed when I was 18, so it was all still pretty new. I had extreme anxiety due to the disease, and put a lot of limitations on myself. I was also sick a lot, thats when I had most of my MS flare ups. So the majority of my nights were spent at home, if netflix was around then God knows the damage I would have done.
     But lately, I have been wanting to simply enjoy myself. My anxiety is diminished, I have been doing great physically and I've just been wanting to put MS in the back of my mind. I've been staying out a lot later and more often and it sucks realizing that my body is not going to let me do that. I need sleep. My body gets very, very upset with out sleep. I get dizzy and achy, it just exacerbates a lot of MS symptoms. It's just frustrating when your body and your head aren't on the same page.
     When I was diagnosed I made a decision to stop drinking alcohol. I assumed it would mix badly with the MS, or maybe not mix well my medications. I was having a random conversation with my mom about a month ago, and the topic of why I stopped drinking came up. Upon discussion I realized that it would in fact not effect anything MS wise, I mean as long as I'm not getting plastered every night. So its been a fun month figuring out what I like to drink. The last time I drank I was 18, and I think drinking at 18 generally is just a sea of cheap beer. So it's been pretty funny being 26 years old, having my first legal drink and having to ask people to explain different drinks to me because I genuinely have no idea.
     So far the conclusions have been that I think all beer tastes the same, and its all gross. My beer loving boyfriend I'm sure is sick of explaining all the vast differences between different beers to me just for me to make a stink face after every sip. I seem to only like fruity things where you can't taste the alcohol at all, so basically I'm a girl. One thing though I've really learned about being hung over, is that it is way worse with MS. So I have definitely learned my limits in that respect.
     All in all its been a fun, and well not so fun, experiences learning how my body reacts different levels of fun having. I think it's all about finding a balance, and I think I almost have mine.

     I was talking to my boyfriend over dinner the other night about how much I love writing this blog, but that I've had nothing new to write about at the moment. My health is great, my mood is great, there are no new MS things to rant about. He brought up a great point, that that in its self is something to write about. I write on this blog only when I have something to say about living with MS, and if reading this blog is your only insight into my life than it would seem that I'm always struggling. But I'm not, and I appreciate the good days more than anything.
     MS makes me grateful for the smallest things. Days that I can see clearly, feel both my feet, wake up with out the room spinning and walk in a straight line are all days I'm thankful for. One of the great things about having MS is that it has made me thankful for so many small things that I used to take for granted.
     I talked recently about having started a new medication, it was giving me some trouble for a while. But things have turned around and it has since been amazing. I haven't been on it long enough to see how its effecting the progression of the MS, but in terms of side effects alone, they have all dissipated and this is the best I've felt on a medication in years. Taking a pill twice a day has been amazing compared to injecting myself nightly. It's so nice being able to just take a pill and go to bed.
     I had a neurology appointment this past Monday and my doctor said it was one of my best visits in a while. There is a check list of current symptoms you have to fill out before you're appointment, and this was the first time in a while that I only had one thing to check off. That one thing was fatigue, which I talked about recently. My vitamin D levels were a little low, but everything else looked great. I hate going to neurology appointments because I never know how its gong to turn out. I have gone to countless appointments feeling great but then finding out that there are things wrong. So it feels amazing when I find out that my body feels the same way I do, because sometimes we don't agree on things.
     I have been beyond thankful for my family and friends who have been there for me in the last four or five months when I was going through some hard times in both my physical and personal life. It makes a world of difference when there are amazing people supporting you when you are going through a hard time. It is even more amazing that once that time is through you have the same people to enjoy the good times with. I have been incredibly thankful for my boyfriend, who is very much responsible for the good mood portion of my life. For my parents, who I love dearly and have continually supported me in every aspect of my life. All of my friends, who are a constant ring of support and love, and for my best friend, who inspires me daily and is the hardest working person I know.
     A few days ago I opened a time capsule that I made in my class in fourth grade. It was to be opened in 2015 and I had forget about it before this week. I was nervous to open it. I assumed that fourth grade me expected to be married with children and have an amazing career by the time I was 25, all of which has obviously not happened. I opened it expecting to be disheartened and disappointment I hadn't met fourth grade Teresa's expectations. But I opened it anyways. Where I was to write my expectations for the future and what I thought my life would be like, the only thing I wrote was "when I grow up I want to be a writer, because I love to write and it seems fun." So, I guess I'm on track after all.
   

     I am often open and descriptive when talking about most things that are happening to me due to multiple sclerosis, but chronic MS fatigue is something I have never been able to really describe. Fatigue is the most common MS symptom and is the reason most people with MS stop working, and it sounds like the dumbest thing in the world.

     You're just too tired.

     Not in pain, not numb, not tingly, just tired.

     I have maybe two or three weeks of extreme fatigue a year. Not enough to hinder my ability to work or function on a regular basis, but they are horrible weeks. It's like everything is impossible. It's not even that you feel like you want to constantly sleep, you just don't have any energy, and there is no reason. It always makes me feel horrible. I will have absolutely no excuse to be tired, I will have had a good nights sleep, maybe even slept in, but it feels like I haven't slept in days. It's really hard to explain that, no, I'm not being lazy, but my body physically will not allow me to do things.
     I'm generally a pretty tidy person, clutter drives me nuts. But when I get on these fatigue kicks, I have zero energy to do anything about the clutter that's driving me nuts. I leave the clothes on the floor, the papers all of over my desk, and my bed unmade. A good way of seeing what kind of day I'm having is to look in my room to see if my bed is made, but don't do that, that's creepy. It just makes me feel gross to not be able to do such simple tasks. My absolute least favorite thing about being fatigued is cooking. When I'm alone I have zero desire to cook anything. I'm vegan, so I tend to have to do a lot of cooking. I get too tired to cook which puts me in a bad mood because I'm hungry, but then the being hungry gets me ever more tired. Its an annoying never ending loop for days. I have had more granola bars for meals this week than anyone ever should. If I never had a granola bar again for a long time that would be great.
     I came across this video a year or so ago and it was awesome seeing  someone else explain exactly how I felt, especially someone my own age. Generally, most MS groups and forums are filled with people much older than me.

     Like I said these weeks don't happen very often for me, but it is definitely happening this week. I started a new medication recently and my body is just completely run down from adapting to it. It feels like I can sit all day but the inside of my body is running a mile a minute and its exhausting. The only great part of these fatigue weeks is that I feel a little justified in my netflix marathons. So for now I'm just going to ride out the week with Bob's Burgers.
     To further prove this complete exhaustion, I just put this post on my pastry recipe blog instead of this one.