Sadly this is not an exaggeration. I am 28 and have had 7, going on 8, surgeries since I was 18. I have been diagnosed with an autoimmune disease and still fighting to discover a reason for my persisting symptoms. I have easily seen dozens of doctors, probably closer to a hundred. I have had doctor’s laugh in my face, call me a liar, and brush me off entirely. I have been diagnosed with a dozen diseases, few of which were accurate. I have been on all sorts of medications and had all sorts of tests, treatments, and therapies. I have had so many blood tests, it’s a wonder I still have any blood left. I am gluten and artificial sugar intolerant. I have spent hundreds of thousands in medical expenses. I am a mess! But I am still here!
I am writing this to hopefully help others understand what it is like to be chronically sick and hopefully help others who can relate to know that they are not alone. I will start by summarizing my medical history, and then tell you what I learned from it, so you can understand where I am coming from. This will be a long read unfortunately, so you can probably skip to the end where most of the lessons will be, but some might be found throughout as well.
*Warning this article may be considered graphic for some. It shows some real incisions and scarring as well as depicts actual medical situations*
I was in my junior year in high school when my troubles began. I was very active, playing for both school and club volleyball teams and in varsity and regular choir. I had a few stressful events happen during this time that tried me for the first time in my life, but all in all I seemed fine. Except now, looking back, I see the warning signs. I was known for sleeping in class, fortunately my grades were good so I didn’t get in trouble. I just could not get going early in the morning. I also started gaining weight despite my activity level. I wasn’t eating substantially more but I was a bit depressed, so it didn’t really occur to me. I also began having severe PMS, sometimes that would cause me to miss school and were completely erratic. I tried a number of birth control pills to regulate and manage my period but most caused me to have substantial mood swings. I finally settled on the Nuvaring, which my doctor had recommended. I stayed on it for the next 6-7 years.
Still for the most part, my junior and senior year, It didn’t really occur to me or my family that I was sick. I was healthy, I struggled with my weight a bit but I had never been super tiny so it was just a constant insecurity.
In 2005, I graduated and went to college. It started out fine but I started feeling like I was having trouble focusing and was still gaining weight. I attributed it to stress and suddenly not being as active as I always had been.
Toward the end of my freshman year, I had a pretty severe gallstone attack. I was coming home from date night with my boyfriend when my side began to hurt unbearably. I felt like I couldn’t breathe and it was just this sharp pressure in my side and chest. It took over an hour for it to pass and I remember lying on the floor, crying, begging it to stop. The next day we set up an appointment with my dad’s gastroenterologist, and learned soon after it was a gallstone attack and I would need to have it removed pretty quickly. We scheduled the appointment for less than 2 days after that. It didn’t give me a lot of time to make accommodations for school, which ended up causing some problems later, but I just knew I couldn’t deal with it again. I was nervous, as it was my first surgery, so the day of, I was pretty worked up. I was prepped and ready when the doctor came and told me that the anesthesiologist was uncomfortable with my family history and wanted to reschedule.
See, I have malignant hyperthermia running in my family. Basically, it is an allergy to a certain type of anesthesia. I have never had a reaction but 2 members of my family have. There is no definitive test and over the last 10 years, more and more doctors have become aware of it and the protocols necessary to avoid and treat it. Unfortunately, at this point, it was not as understood and my anesthesiologist had never had a case before, so he wanted to brush up on it.
Overall, I am definitely glad he postponed it and admitted his discomfort, but I was very distressed because I had worked myself up so much for the surgery. Still, I ended up having it a few days later and it all went well.
This surgery was kinda a pain to recover from because every time I moved, I moved my abdomen, and it hurt. But other than that, it is basically just taking it easy. I spent the night in the hospital so they could monitor any delayed reaction to anesthesia and then just took it easy for the next few weeks. I would say, it probably took 6 months before all pain was gone from the incision sites.
All good for about 2 years. I was still gaining weight but college was a more sedentary lifestyle. I didn’t party much and I worked part time so I kept busy. I still struggled with sleep but figured it was because I was young and a night owl. I started developing headaches over this time. I, at first, attributed it to allergies. I have always has seasonal allergies but this was all day everyday. It started out as light headaches and gradually progressed to more substantial headaches that interfered with my daily life. About once every 2 weeks I would get one so bad I thought my head would explode. I would vomit and almost got to the point of needing to go to the ER. I decided I needed to get some help for this. I went to see my allergist and he suggested I see an ENT. The ENT did some imaging to discover I had a slightly deviated septum and pretty substantial sinus blockages. My septum was not deviated enough to warrant surgery but my sinuses were a problem. He said this could easily be causing my headaches so suggested I get a balloon sinuplasty. Basically they take a balloon on a stick, stick it into your sinuses and blow it up to open up the cavity. I agreed, hoping it would help stop my headaches. I had this surgery in 2007.
This surgery was not too difficult to recover from, but was definitely not any fun! They stick this packaging in your nose to keep your passages open for about a week while the inflammation goes down. Then you go to a follow up where they pull it out of your nose with some tweezers, which I kid you not, feel like a giant booger being pulled from inside your brain. Very uncomfortable, not so much painful though as awkward. The worst part about this, for me, was that anything I did hurt my face. Eating, talking, bending over, hell even breathing haha. I lived off soups and drinks I could drink with a straw for about 2 weeks. I also had some good dizziness and nausea bouts associated with this. Oh, plus your face is swollen and your eyes bruise a little, so super sexy.
kinda like this…again, not me and this is after a rhinoplasty.
I would say it took me about a month to recover completely from this surgery, including bruises to fade.
Surprise, surprise! My headaches didn’t go away! Okay so maybe not a surprise, just really annoying. So my ENT sent me to a migraine doctor. The first one blew me off entirely. He told me if I lost 20 pounds, my headaches would go away, and walked out without another word. Ya…
So my ENT sent me to a different migraine doctor. This one tested me for all sorts of things: migraine associated auras, my hearing, my vision, my balance, my reflexes to visual and auditory stigma…everything. And it was awful! There was this one test in particular that was brutal; they blind you with these goggles where they can monitor your eye movement but you can’t see anything. Then they vary pouring cold and warm water in each ear. This tests your vestibular system. But OMG, it makes you feel like you are spinning and makes you SO nauseous! and you have to do it like 4 times! OMG I left that place feeling like I had been through the ringer for hours. The results yielded semi-helpful results but no cause. I was officially diagnosed with migraines with light, smell and some sound auras. This basically means that I have migraines and some lights, smells, and sounds can trigger or exacerbate them. Fun!
Still, this did not address my everyday headaches. So they gave me a pill. It was supposed to dull my headaches..it did…but it also made me nauseous, made me feel like my head was floating and made me irritable. I didn’t take that very long; it was almost worse than the headaches. So I settled for OTC pain relievers again.
I was still gaining weight, not sleeping, had unexplained aches and pains, daily headaches, irritable bowels, lethargic, exhausted, irritable…it was a bad time.
It started out well enough; we went on our yearly vacation, this time to Disneyworld. I loved it!
And soon after I would be attending a vet tech seminar that I was super excited about, and graduating with one of my degrees…so I was looking forward to a good year.
Then on Feb 10, 2009, I witnessed a friend and coworker murdered. Needless to say, there was a lot of stress and coping and recovery with that.
When you feel yourself starting to panic or spiral. When your breath and heartbeat quicken and you start to sweat and feel yourself losing control- Say “STOP” out loud. Then close your eyes and hold your breath for as long as you can. This will literally force your heart to chill out. Then open them and focus on something around you. Go outside and feel the warmth on your skin and note how good it feels. Look at the green leaves of the trees and try to count how many shades of green you see. Listen to the birds twitter or the steady hum of traffic and let it soothe you to know that the world has not stopped, it is still humming along; and thus you will be okay. And just let yourself breathe. If the thoughts begin to creep back in, it’s okay, just refocus on another tree or maybe the shape of a cloud or the bees flitting from flower to flower. Refocus and breath. Eventually, your heart will slow, your breathing will become normal, the fear and anxiety will ease. You have made it through that horrible moment, it has passed. And you will feel like maybe you can make it through the next moment.
I settled on a doctor I found on Yelp that had pretty good reviews. I was pretty impressed; she seemed to listen to me and immediately gave me referrals to additional doctors to work on a team approach for addressing my symptoms.
This is a great video that explains the types of SVT. Mine was structural and genetic. The fix: an SVT ablation.
Before surgery, my doctor wanted to be sure that my symptoms were only coming from my heart, so a month before surgery was scheduled, in November of 2009, he asked me to get off of the Nuvaring. he said in some cases it could obscure the results. And guess what…my headaches disappeared within a few days! I spoke to my GP about this and did some testing to discover that it had somehow built up in my system and was causing me to eat more and have greater hormonal fluctuations! This was a concern because I had been on it for about 6 years…not good, but I was relieved to have that out of the way. It did not, however, effect my heart problem. So we proceeded with surgery.
Now I discourage anyone from using it!
An SVT ablation is basically where they sedate you, then speed up your heart in order to cause the SVT to start up so they can see where EXACTLY it is. You need to be awake so that you can tell them if there is a problem. Lots of patients report not remembering this or not feeling anything…I remember EVERYTHING and it hurt! So next, they stick in a tool that will cauterize the ends of the extra connection. They insert this through a catheter that they have put in your neck as well as ones they have put into the femoral arteries near your groin. The cauterizing hurts…a lot..it feels like a firecracker was set off in your chest. I am not sure I could do this again if the connection ever grew back (but I probably would). I do not want to discourage anyone from getting this surgery, because afterwards, I have been heart problem free….but to give a true account of my own experience with it.
The following video gives you a more general view of an ablation and probably less scary perspective than mine…please don’t be discouraged if you need it! It was worth it!
This puts us at the end of 2009. Whew!
This year was almost, dare I say it, uneventful.
The first few months were dedicated to recovery. In terms of incisions, this recovery was easy. I had a few small ones on my inner things and one on my neck but they were very small and healed quickly. My heart, on the other hand, took some more time to heal. The hardest part was feeling exhausted all the time. It almost feels as though your heart is heavy in your chest. Even simple things like walking down the hall or upstairs were exhausting for a while. It was even harder because this was the first time no one could physically see my scars, so it was harder to understand and explain. I would say it probably took a good 6 months before I was doing my daily activities without any tiredness, even with some light exercising. But I would say more like a year before I stopped worrying about my heart when I exerted myself. In comparison, this recovery was pretty easy.
I struggled with finding doctor’s that would listen to me. My GP was just not helping me alleviate my symptoms, and I was still gaining weight, despite being off the Nuvaring. I knew I had to take it easy with my heart but I wasn’t eating enough to keep gaining weight. By this point, I was starting to give up. I really just felt that I was broken. I was tired of surgery and tired of recovery and tired of always feeling bad every single day. Plus my relationship was on the rocks because of my health issues and I just couldn’t take anymore stress.
I finally got to a point where I felt I did not need therapy anymore so I wrapped it up. I decided to focus on school since so many other things were falling apart in my life. I was just ready to move on.
The beginning part of this year had kinda floated by, culminating in a really low point in my relationship, when I was told he was embarrassed to hold my hand. That was pretty hard on me. I got kinda self defeating at this point and definitely suffered a moderate amount of depression. Thankfully the second part held some answers.
In August, I happened upon a flyer in the mail for a free dinner lecture on hypothyroidism. The flyer said ‘ do you have undiagnosed hypothyroid symptoms? If so, come to our free dinner lecture and learn all about what is really wrong with you.’
Intrigued, but skeptical, I convinced my mom to go with me. There we met Dr. Charles Webb and he was talking about his program Imagine Wellness. He was pretty convincing and a lot of what he said rang true. He invited those who were interested to come for an appointment to talk one on one. My mom and I thought this was a pretty good deal, so I signed up. Upon first meeting with him, I explained my whole spiel…it’s obviously a lot.
He listened and nodded and when I was done, told me ‘you have Hashimoto’s thyroiditis and I am going to prove it to you.’ He sent me for a blood panel which included a test for the antibody against your thyroid. Sure enough, I had it. I couldn’t understand how so many doctors had missed this, and when he explained it, I understood why. Hashimoto’s is an autoimmune disease in which your body produces antibodies against your thyroid. Similar to a car’s engine sputtering out, you will experience periods when the thyroid works fine, times when it produces more than required (hyper), and times when it is attacked and not producing enough (hypo). Eventually, the thyroid will shut down completely because the immune system will win, at which point I would have to be on thyroid replacement hormones.
At this point, I was 23. The last thing I wanted was to spend my life on a pill, so I asked what I could do to prevent this. He told me get on a gluten free diet. What?! This was a little before the gluten fad really caught on so I had no idea what that meant. He explained that I had leaky gut syndrome due to gluten. Now this can get a little complicated, so I will probably write another entry on this alone, but basically leaky gut syndrome is when your body becomes sensitive to a certain substance in food, for example gluten. Think of gluten like a bumper car; here’s this substance that every time you eat it, it rams your intestines, weakening the bond between cells. Eventually, if it keeps ramming the same place, that space between cells is going to form a hole. Through this hole, small amounts of gluten will be able to break off and float through. On the other side of the hole is the bloodstream. Now that piece of gluten finds itself inside the bloodstream, able to go anywhere in your body. A white blood cell, a cell that defends your body from foreign objects, see this gluten and recognizes that it is foreign. It sounds the alarm. Problem is, gluten looks a lot like thyroid hormone. So when the alarm goes off, every fighter cell gets a picture of the enemy, gluten, and goes on the hunt. But some mistake thyroid hormone for gluten so they attack the source, the thyroid instead. The cure then is multifaceted: Don’t eat gluten- this means no new holes in the intestines, no new escapees, and no more case of mistaken identity.
* Please be aware this is a very simplified explanation of Hashimoto’s and gluten associated sensitivity. Please do not mistake this as medical fact- there are no bumper cars in your body*
Unfortunately, food allergies/ sensitivities travel together (other things like to sneak out of the hole too), so I went on the food elimination diet to figure out what else caused my body problems. This is a pretty cool diet that I will explain in another post if anyone is interested, but the idea is to first do a cleanse, then to eat a completely allergen safe diet while slowly introducing a new food back into the diet to see if it causes you any adverse symptoms. This took me about 3 months and I was very happy when I was done with it. What I did learn was that I also have a sensitivity to artificial sugars, so I got off those too.
The remainder of this year was so busy spent learning how to go gluten free and participating in Dr. Webb’s treatment plan, that it went pretty quickly.
I learned a lot about nutrition really quickly, and while I did not have the drastic weight loss some did while going gluten free, I did notice a HUGE improvement in my symptoms and was able to lose some weight. I no longer had the mysterious joint pain in my legs and arms. My headaches were much further apart and less extreme. I was feeling less lethargic and irritable. I was less depressed and starting too feel more optimistic. I had much fewer instances of irritable bowel. Overall, I just felt a lot better. I had replaced my pharmacy of prescription drugs with a pharmacy of natural supplements and vitamins. I was taking a ton of pills each day, but all in the efforts to reverse the damage that had been done with gluten. And at my 6 month appointment, we found that it was working; my thyroid levels had remained the same. I.e. we had slowed, if not temporarily stopped, my thyroid from being attacked! Things were looking up.
Yay Graduation! I graduated from college with 2 bachelor’s degrees- a BS in Biology and a BA in psychology. I had finished my applications to veterinary school and was just waiting on acceptances.
Still, I found myself with a good deal of down time so I got a temporary full time job at a veterinary clinic just until I got the results from all my applications. Turns out that answer came around August; I would be going to the island of St. Kitts to attend a U.S. based veterinary school in the Caribbean!
I was stoked! I hired a personal trainer to help me get into swimsuit shape, and with his help and lots and lots of working out, I was able to lose some weight, but even he was surprised at how little. I knew this wasn’t the complete solution because of the difficulties I still had with weight loss and hormonal fluctuations, but it was such a good start, I remained optimistic.
The rest of this year was spent working out, packing and prepping for the move to a foreign country, and working a bit. I was feeling much more optimistic, but apprehensive about life in a third world country, being away from family, making friends, school, and being away from my long term boyfriend.
January 2012…Hello St. Kitts. A beautiful island; blue water, lush greens, warm sun, great island breeze. BUT it is a very poor country. As a tourist, this would be a nice place to visit…to live, not so much.
I don’t want to seem like a spoiled American, but there are definitely conveniences in the states that I just didn’t get on the island. For example, consistently clean running water- whenever it would rain, the sewer and mountain water sometimes would get into the pipes and render the water undrinkable. You definitely have to boil your water and run the risk of giardia in the local cuisine. Also, consistent power…the power is always going out, which is mostly a problem because then the AC turns off and it can get stifling, but also because it will go out for hours at a time and your food in the fridge might spoil. Because of this, I was unable to keep much in my freezer. AC- I have always been cold natured so rarely use the AC at home, but in Stk, you have to because it gets so humid. The problem is, AC is very expensive. I used it very conservatively for about 2 hours each night and over 3 months, my bill was $1000. Oh, and almost everything except clubs and bars closes early. So paying bills or running errands AFTER classes is almost impossible. Most importantly though, for me, was the food situation. First, no one there had any idea what a gluten allergy was, so eating out usually was quite a risk and I got sick many times. Since I don’t eat bread, and an island diet is mostly paleo, I was able to mostly get through the day without problems. The 3 biggest obstacles were: seasonings- some jerk seasonings have MSG. 2) Snack Food- almost all of the quick food or snacks you could get at school or at the grocery store resembled American fare- sure I could find pizza and burgers and twinkies, but gluten free was really difficult. In fact, if I wanted bread, I had to make it or have it brought from the states. 3) Fast Food/ Delivery- As a college student, this is taken for granted. During those days you just have to cram for finals and there is no time to cook, you order a pizza. Unless you are me, living on an island where the only 2 delivery/fast food options are an Indian food restaurant or pizza. Basically, there were no fast food options for me, I had to cook or plan my meals out in advance.
Alright so island living is hard, and that wasn’t even the half of it. And after 8 months on the island, I found myself back at home, figuring out what to do next.
This was a difficult time for me emotionally because I really felt like I was starting over and like I had just wasted all this time and money for nothing. On top of that, my relationship was still rocky and I had begun having trouble with my knees.
They would pop every time I walked, and it was painful. Turns out my IT bands, extend from the hip to the knee, were tight and were popping out of place every time I moved. I wish I had known before what I know now about possibly loosening them through exercises and physical therapy, but I didn’t. So I listened to my doctor and went ahead with bilateral IT band release surgery (both knees at the same time). That was scheduled for December 2012. Right before that in November 2012, I would be having my wisdom teeth removed under anesthesia because they were embedded in the gums.
Wisdom teeth went smoothly, just looked like a chipmunk for a bit and constantly had to flush food out of the holes in the back of my mouth while they closed up. Fun!
Then IT band surgery went pretty well too. But recovery was very difficult: in retrospect, I would still do both at the same time rather than opt for one at a time, but I had no idea how difficult this was going to be.
This was a very LONG recovery; probably a good 9 months before I could do most of my regular activities. Biggest obstacle I later found out that I should have been sent to physical therapy early on; instead I had to request it at about the 6 month mark.
Here are my knees about 1 week after surgery..check out that swelling! and those colors!
My boyfriend got accepted into the sister medical school of the veterinary school that I went to, so we spent the rest of the year getting him ready to live on an island. Good thing he had a heads up from my experience!
This year started off with a trip to Dominica. Yes, I am the crazy person that goes on a trip to a foreign country to go help her boyfriend move only 6 weeks after double knee surgery…ya. haha. It was a crazy experience; very difficult. I had a lot of depression during this time because I was stuck in the apartment all day long, because we couldn’t go do anything fun, and because I was very jealous (don’t get me wrong I was also very proud and very happy for him) of him because his life was moving forward and I felt stuck. I was hoping Dominica would help our relationship, but it didn’t give it the lift it needed to last much longer. This is where I got the beautiful picture of a dog on a beach that I use for my blog though.
A few months later, my boyfriend and I fell apart. It was very hard on me. We had been together for almost a decade and for a long time had planned on getting married. But sometimes things don’t work out, no matter how much you love someone. And sometimes it has nothing to do with love but with timing and growth; we had grown up together and unfortunately, some of the same experiences led us to very different paths in the long run. I do not like to air my dirty laundry and by no means do I want to bad-mouth my ex, because for the most part, he was wonderful to me and is a very good man, but I do want to bring up some of the issues we had in order to address them later in the lessons part. One of the biggest hindrances we had as a couple was my health. It is hard to stand by and watch someone you love be sick all the time, or not be able to share experiences with them, especially when you are young. And unfortunately, the active lively girl I had been when we met was a bit of a far cry from the surgery prone sickly girl I had become. That’s hard for him and for me. In addition, the question of children was one that was really important and very influenced by my health. I honestly felt as though having my own children was not in the cards for me; between my health and career goals, I just didn’t know. That was not okay with him. He was okay with adopting but having his own kids was also ‘a must’ for him. And I wasn’t sure if I wanted to or even if I could give him that. So in the end, it is better we went our separate ways, but let me tell you that getting over a decade long relationship, has been no easy task, and in many ways I still have a lot of healing and growing to do.
Recovery was going pretty well and around March I got a part time job as an administrative assistant. This worked because I got to sit a lot so my knees didn’t get too stressed. I started attending physical therapy around April and it went pretty well. I was making good progress in bending and kneeling and squatting.
I even met a guy whom I started dating. He has been helpful to me because he had been divorced a few years back so could relate to the healing that I needed to do. Plus, he thought I was perfect and was willing to wait for me to heal. Both were very helpful at this time.
In September, I decided I could not deal with my life not moving forward, so I decided on going for something I was good at…nutrition and wellness. So this naturally led to the field of chiropractics. I had my reservations about being a chiropractor, namely that I wasn’t sure I was passionate about it but I was good at it. I decided any path forward is better than standing still. So I applied to 5 chiropractic schools.
In October we got into a car accident. *Facepalm*
A car rear ended us on an access road going about 60mph. We were going maybe 20mph. We were thrown across 2 lanes and into the guardrail. Everyone survived.
But not without significant damage! The guy who hit us was driving one of those cube cars or something very very similar.
My boyfriend and I incurred 2 severely herniated discs each. He had one so severe that it was causing substantial compression of his spinal cord. We got a lawyer who sent us to months of physical therapy, steroid shot injections, and eventually to a neurologist to assess how badly we were injured. It was deduced we would both likely need surgery on both of the herniations. Great! *sarcasm*
Worse, the guy had nothing…no money or assets so we only got a small insurance payout, which barely covered the medical expenses we had already accrued. They would not be paying for us to actually have the surgeries we needed. Super frustrating.
This also, unfortunately, caused my physical therapy for my knees to be brought to a halt because the exercises to my knees caused pain in my back.
So the rest of 2013 was spent coping from a bad breakup, working to stay sane, waiting on applications, and doing daily therapies for my back.
2014 wasn’t really a year I was looking forward to. I knew it was going to contain more therapy, working with the lawyers, and possibly surgery. So when I started it, it had a lot of the same frustrations and depressions from 2013.
Around May the case was closed and we received the tiny amount that was left over after medical expenses. I put mine towards surgery. We decided that my pain seemed to be less bearable daily (maybe I’m a wimp) so I would get mine done first. We set out for surgery which was set for August by the time the case and legal stuff finally let us move forward.
I received all my applications back and was accepted into all 5 schools! I settled on Logan University in Missouri because of it’s great reputation and emphasis on wellness.
So in August I had my cervical discectomy and fusion done. This was kinda crazy because I was supposed to matriculate in late September, but that clearly never stops me haha.
The surgery was easy, I was in the hospital for a few days after because I had trouble with the pain. Here comes the hardest recovery I have ever had! Now before you read further, don’t think it’s because of the surgery, mine was purely because of months on pain meds prior to it! I had a lot of trouble regulating my pain because the pain meds that they give you after, Tylenol 3 or Norco, I had been on for the 8 months prior to that while in pain management therapy. So I definitely was experiencing tolerance!
This pic is of week 1. * Be warned, it’s kinda gross!
So I up and moved in mid September to matriculate with my class. My parents, my boyfriend, and I drove from Texas to Missouri…it takes a solid day. It was kinda a hard trip for me because I was uncomfortable with my giant neck brace on. Still I was grateful they were moving me because I could not have done it myself! My apartment is super cute and I have a whole blog entry about it so go check it out!
By the end of the first week of school, every knew me, because I was the girl in the neck brace.
Ya, so that was interesting.
In a nutshell, I had quite a difficult recovery trying to go to school full time and deal with my pain. My boyfriend ended up moving to Missouri to help me out because daily tasks were just too hard. I also had to go down to part time because just sitting in class all day was too hard.
I went through 2 pretty substantial withdrawals from meds and a case of whooping cough *random, I know*.
If my boyfriend had not been there to take care of me, I have no idea how I would have gotten through the semester.
I was able to work it out with the school that I could take off a couple of semesters from school to get my lumbar surgery in February. They worked with me quite a bit and were able to arrange it so that I could take a nutrition masters program online while I was recovering, so I still was working towards my goal. I appreciated this immensely.
This finally brings us to …
So I was supposed to have surgery in February. I started my online classes and had my boyfriend stay in Missouri to watch my apartment and the cats while I came down for surgery. BUT when I arrived a week before surgery, insurance decided that they were no longer going to cover it unless I had extensive psych evaluations. Great. *sarcasm* So in a nutshell, we spent the last 2 months petitioning to bypass the extensive therapy and finally won! Ugh! Only took off 2 additional months and wasted a whole semester for it! But now it is scheduled for April 16. Finally! I am not excited about the surgery because I am basically signing up for 9 months of painful recovery, but I am ready to get it over with and move on with my life. I hope this will be the last surgery for a good long while.
My online classes are going well, and if all goes as planned, I will end the semester with straight As. I have to finish my classes a few weeks early so surgery doesn’t conflict, but that’s fine with me. My boyfriend will be visiting soon and bringing my cats to say hello. So in the meantime, I have lots of homework to do and organizing of my stuff for the months after surgery. I know I still have plenty of health issues to address in the future but I am hoping that this is one more step to better equip me to finding the answers and to getting better. Guess we will see!
Alright so strap yourself in for some knowledge! Haha! I am writing this because I would like to believe that someone somewhere will benefit for having read this; From having heard my hardships and what I have learned from them. It’s the only real reason that I can come up with that would make it all worth it…ok well maybe if it saved the planet from an apocalypse, but other than that.
First lesson, you can’t plan life; it’s about the journey. I had very definite plans when I was in high school about how my life was going to go and I guarantee you it did not include sickness or not finishing grad school or breaking up with an 11 year boyfriend. But life happens and planning it just makes it harder to cope with. I’m not saying don’t make any plans for your future, just that you should pencil them in rather than write them in stone.
Second, learn to roll with the punches.
This is one of the hardest lessons you will ever learn and you will spend your whole life learning it. Some people just get it, they naturally don’t take defeats that hard and they move on quickly. Sometimes it depends on the situation; some you take hard, others you brush off. For me, my health and all things associated with it have always been one I take seriously. So when it effects other parts of my life like relationships or career goals, I take it hard. That is unfortunate, but it is how I am. My lowest point was when I got back from St. Kitts, had to start over with school, lost my boyfriend, was recovering from one surgery and needing another. They say that if you relax in an accident or when you get punched-you don’t tense your muscles, the damage is less. This is the same idea. I let myself get so worked up over things, caused myself more damage, and forgot the big picture. Yes Stk didn’t work out- but it was an experience many do not get to have and I met some amazing people out of it. It made me stronger. So I have to start over with my career- it’s a chance to pursue something else. I lost my boyfriend- but it was better for both of us since neither of us was really happy. I was RECOVERING from surgery which means getting better. And so I needed another surgery-it’s just one more step showing me the way to health.
*my mom is probably dying at all this optimism (she thinks i’m a pessimist lol)*
But really, life is going to hit you and sometimes it’s gonna knock you smack in the face and off of your feet and you aren’t going to want to get up. But if you relax your muscles for that hit, mentally prepare yourself that you know the path is not gonna be smooth and straight, you will better equip yourself to roll with those punches.
Third, Remember you are supposed to make mistakes, to carve out your own path. If you didn’t, the path would not be yours to travel, you would be traveling someone else’s.
This is the part my dad can’t stand. With all his years and wisdom, he always wants to edit the choices I make. He says ‘when you see a train coming at your child, you can’t help but yell for them to get out of the way’, which I can totally appreciate. But I don’t see that train yet, and I deserve the right to make my own choices. *now if its a literal train, please give me a heads up*.
I met a girl in stk who said that ‘if she failed out of vet school she had failed at life because that is all she had ever wanted and it was all she wanted to be’. She also said that ‘she spent her whole life trying not to make mistakes because they ended up ruining your plan’. Unbeknownst to her, she has taught me one of the greatest lessons I have ever learned in what I DO NOT want to be; and that is perfect. I know, crazy talk. But seriously, some of the greatest lessons I have ever learned came from my mistakes. They have made me into who I am and I am constantly looking at how far I have come and how much I have grown. Why would you ever regret mistakes you made? You made them with the best information you had at the time. You thought it was best for you. How can you beat yourself up for that? I also don’t want to put all my eggs in one basket, so to speak. I am not defined by any one aspect of my life. I am not going to ‘fail at life’ if I fail out of school or royally screw up a relationship. I think this attitude sets you up for failure and serious problems down the line, so I really really hope that you look back on your choices and don’t regret them. You are human; you are allowed to make mistakes. And those mistake will help determine who you become. Whether you choose to learn from them or to ignore them, whether you change direction or keep down the same path; they all determine who you are and you should never regret that.
Fourth, Do not hide your scars. Scars are the body’s way of saying you were stronger than whatever tried to hurt you.
How many of you are guilty of this? I know I was, for a very long time. And then I had the luxury of going to stk. I could start over, be whomever I wanted to be with people who did not know me. Now I know that’s a luxury most people do not get it but you can still make the choice at any time to be the person you want to be. I always was ashamed of my health issues, thinking deep down that they were somehow my fault. That the scars were a visual reminder to serve as punishment for mistakes I had made in some crazy screwed up way. *ya, not logical, I know*. But in stk, I decided I was going to be more open than I had ever been. I was going to tell people my secrets and fears and see what happened. And it was refreshing for me and for them, or so I am told. It was nice not to feel ashamed of things that happened in life because when it came down to it, they happened. I can spend my life running from it but it doesn’t change that it happened. So I embraced it. I did experience a good bit of heartache when I left stk and many of the people I had poured my heart out to ended up falling to the wayside. And it hurts to lose a friend you were so open with. But I made a few really good ones that were well worth the effort. And really, it’s so much work running from who you are, the choices you’ve made, the skeletons in your closet…and it hurts your soul. It’s so much easier to acknowledge that I am flawed, I am not perfect, and I have scars. I am lowering the bar to a realistic expectation, not some unachievable height that I will break myself trying to reach.
And now, with a much more visible scar on my neck, I can say this more than ever. People ask me all the time what it’s from and I find myself in deep, meaningful conversations with people because of it.
Fifth, We are all here to touch people’s lives and to be touched by others. If I spend my life hiding who I am and what I have learned, I am not helping myself or anyone else. If I spend my life being myself and learning from my mistakes and from the people that I meet in my life, then I am enriching my life and their lives in the process; and that’s the whole point isn’t it? Remember that everyone you meet has something to teach you and can learn something from you as well. Go in to relationships open hearted and willing to give and receive and you will surprise yourself at how much you learn and grow.
Sixth, don’t let pain take away your softness. Don’t let it harden your heart so love and happiness cannot find their way in. The greatest thing you can do for yourself and for others is to stay soft and to stay kind. Life will do it’s best to make you change, but if you remain this way, you will most certainly win in the end.
Now to the nitty gritty.
Seventh, Shit doesn’t get easier or lessen, you just learn how to deal with it better. I hate when people say that ‘it will pass’ or ‘it get’s better’ because they are empty meaningless sentiments. It doesn’t go away, I just learned how to deal with it. Let’s use an example. Think of each problem you have right now as a shit patty and then pile them nicely on top of each other.
Now we all know that poop is biodegradeable, so eventually that pile will go down, but it’s going to take too long for us to consider reasonable, so for coping purposes, we are going to deal with the entire pile. Responsibilities from work, family, friends, partners, bills, health, and kids are always going to be there. Those shit patties are not going away. But let’s say the boss decided to lay on a massive caseload that is going to take you FOREVER to finish. That is a giant shit patty that gets added to the very top of that pile. And it squishes the ones beneath it making everyone a little uncomfortable right? Well, you could quit but then you just replace that shit patty with a new ‘looking for a job’ shit patty. So that didn’t help. All you can do is find a better way to arrange the shit patty *please wash your hands after* so that it isn’t squishing your other responsibilities. Make sure you work more productively while you are at work, maybe even skip lunch so it doesn’t effect your family life so much…that kinda thing. These are conscious choices we make to make life more bearable but it does not mean that life got easier or that problems went away.
This metaphor *because I know you love it so* also applies to past burdens. That guy who broke your heart left you with a ‘getting over him’ shit patty. Well over time, that shit patty is covered with other shit patties until before you know it, it is squished somewhere in the middle and doesn’t matter so much anymore. This is ‘moving on’; it didn’t go away, it just became less ‘pressing’ than other shit.
Haha okay I’m done with my metaphor. And excuse the language, it just had to be done.
Eighth, strength is not about being strong or brave; it’s about making the only choice available to you; to be strong.
I cannot tell you how many people have told me how strong I am or they wish they could be as strong as me. Now, don’t get me wrong, I appreciate the compliment, but it is giving an award for something you did, not because you were strong or brave, but because you did not really have another choice. Now that may sound bleak or humble but it’s not meant to be either. When you kick a dog into a corner he only has a few options and only one leads to life. He can give up and lie down to die, he can wait and hope someone will save him, or he can fight. This is what real strength is. It is knowing that I do not know what lies ahead of me but if I do nothing, nothing will change. Strength is just the will to survive, which is something I cannot completely give myself credit for because a lot of that is instinct too.
I am about to pull out my nerd card….I love Buffy the Vampire slayer, which if you have noticed, will soon have it’s own addition to my blog. Yay! Okay, but there are a few really apt quotes and I want to share them with you.
The point I want to get across here is not that you are actively making a choice or failing to make a choice. You fight because it is all there is to do. If I didn’t fight my health battles, then nothing would ever get better and my health would continue to spiral until one day it killed me. I would never feel better, I would never have good days, and there would just be pain. More and more pain until I died. Sure fighting is hard, but it’s not as hard as giving up. So sure, if you want to call that bravery or strength, go ahead. It’s more of an avoidance of pain in my view. But it’s more about just making the choice to live a life worth living.
Ninth, *almost done!* health battles are battles you will always fight alone. This may seem bleak but it’s really not. I will tell you right now that it was harder to watch my parent’s faces when they heard I needed heart surgery than all of my recoveries combined. It is harder to share how much daily pain you are in because people don’t know how to help you. Now, I am by no means saying keep it all in and don’t share, but I am telling you that fighting it yourself means you are in control of how much other people hurt because of your illness. And that’s really empowering because you can’t control the illness, you can’t control how hard it is or how much it hurts, but you can control how much it effects the people you love. Part of being strong and loving someone is protecting them from things that will hurt them. No, you do not and SHOULD NOT carry that load on your own, but not telling them every excruciating detail helps them cope with something they have no control over. If I told my family and friends just how hard every day was, just how much pain I could be in, just how much I wanted to give up, they would be devastated and constantly worrying about me. Had I told my parents how terrified I was about going into heart surgery, how would that have made the situation better? It would have fueled their worries and made them more protective. This is kinda a double edged sword because I don’t want to tell you to keep it all to yourself because that is selfish and not good for you or your relationships. However, telling the people you love just how much pain you are in only ends up making it harder on yourself and on them. I don’t really know a better way to say that so I hope it is coming off right. I wrote a post a while back about how families can help you cope and themselves cope during chronic illness. You can find it here. I think it gets the message across pretty well, so I am going to send you that way if you want to read more on it.
And tenth, on the dark days, and oh there will be dark days, take a moment to breathe. I am going to repost the tips from my therapist on dealing with anxiety in a second, but really take the moment to breathe. You will get through this, you will learn to cope. You are strong and you are capable. Look in the mirror and tell yourself that. Funny thing is, deep down, you already know that. And I am here to reassure you that you are right.
Here is the advice from my therapist:
When you feel yourself starting to panic or spiral. When your breath and heartbeat quicken and you start to sweat and feel yourself losing control. Say “STOP” out loud. Then close your eyes and hold your breath for as long as you can. This will literally force your heart to chill out. Then open them and focus on something around you. Go outside and feel the warmth on your skin and note how good it feels. Look at the green leaves of the trees and try to count how many shades of green you see. Listen to the birds twitter or the steady hum of traffic and let it soothe you to know that the world has not stopped, it is still humming along; and thus you will be okay. And just let yourself breathe. If the thoughts begin to creep back in, it’s okay, just refocus on another tree or maybe the shape of a cloud of the bees flitting from flower to flower. Refocus and breath. Eventually, your heart will slow, your breathing will become normal, the fear and anxiety will ease. You have made it through that horrible moment, it has passed. And you will feel like maybe you can make it through the next moment.
I hope this post helped you and I appreciate you sticking with me until the end. I would love to hear your thoughts and comments or any other lessons you have learned about illness and surgery. For more of the fabulous quotes I referenced here, check out my Pinterest board To Be or Not To Be.