A Snails Pace Matters

I took a walk this morning!! Such a huge thing when I have the desire to go AND the ability to go at the same time! My husband is at work and yesterday He was also able to work all day without coming home to make my lunch (which is huge!). My body still aches and runs fever from inflammation and from an over stimulated brain, my heart rate is still far too high causing blood pooling in my legs and feet making them swell, my headaches still persist and I’m still in bed most of the time using a heating pad to ease the aches and an ice pack to keep from over heating. I may have had my young daughter bring me 2 slices of cold pizza for lunch yesterday because I couldn’t even walk to the refrigerator and get it and put it in the microwave. But that’s because I spent the energy I did have on crafts with her and much needed paperwork/research that needed to be done for my husband and talking to 2 separate doctor offices to schedule another appointment and some needed testing for me (it’s all about prioritizing the little bits of energy).

This thing called life is really hard, tons of mental and physical limitations, but truly, this is the “easiest” it’s been in 4 years and I WILL NOT take the little things for granted. I refuse to forget where I’ve been and where I can easily be again. This journey of chronic illness and mental illness never goes away but it does go up and down. The fear of the next down is a constant threat to steal the joy of the ups. Not only that, but sometimes I have to look really hard to find “good” in the midst of so much hard. That’s one of the reasons I started focusing on the fact that “the little things are the big things”!

When my daughter was diagnosed with an extremely severe and terminal heart condition my whole perspective on life changed. The things that used to matter didn’t anymore and the little things seemed huge! We just focused on surviving and every moment and every milestone was an un-promised gift. We’ve continued to have multiple unexpected challenges but truly the perspective of cherishing the little things has been an important piece to fighting to keep moving forward. I can get discouraged at how sick I am and my major limits and then I remember that 2 years ago I couldn’t even take a shower…as in, the idea seemed unreachable! Most days I was never even able to leave my bedroom. I needed help for basic care. I was so sick that I had to go out of state and I spent 2 months at the Mayo Clinic getting intense testing and invasive (painful!!) treatments. I got pneumonia and went septic (it was scary, although I had excessive memory loss from treatments during this time which is a whole other set of trauma). I was so fragile and so so so sick. Now I shower regularly and while it’s hard it’s also just something I do without thinking much about it!

So ya, it may have taken me years to get here and I may still have a life that looks significantly “different”, I still need tons of rest, I use a wheelchair when needed, I go to therapy, I have to have regular treatments, I see a lot of doctors, I take meds, I lose the ability to walk and talk occasionally, I fight the darkness of mental illnesses, etc. But I also feel some new strength, some new hope, I get to spend more quality time doing fun things with my daughter, I can (usually) take care of my own basic needs (except for food), I can run short errands on good days, I can drive on good days, I can do light exercises, I can help my husband carry the load, I can help and encourage friends, etc.

So now do you see why the little things are such big things to us? We fight for our lives and the little moments are what give us glimpses of the reason we fight! They refuel us to keep going, they gives us tastes of heaven. They remind us that there is good in the midst of pain. We find purpose when we look forward. They say “not to look back because you’re not going that way” and boy is that true when you are talking about things you can’t change, BUT when I start to feel discouraged by my slow progress I look back and, as it turns out, even when you’re moving at a snails pace, if you keep going you can cross a lot of ground! Keep going friend maybe one day you’ll take a shower without even thinking about it and then it will hit you, “I JUST TOOK A SHOWER!” And that is so worth celebrating because “the little things really are the big things”!

Keep Fighting,

Dawn Harris

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Transparency in a World That Tries to Silence You

Can we talk about transparency for a minute?

Gosh this is a tricky word or rather a tricky concept.

There are usually two scenarios in those who really struggle with their mental health. One are the people that are open and vulnerable and share their struggles with friends, family, social media, and even strangers. The second are the people who try to hide it, to keep it in, to keep going looking as normal as possible, and never letting anyone know that are fighting a raging mental battle. Now, yes there are lots of variations and combinations of the two scenarios I just described and truthfully most people are a mix of the two, but they at least tend to lean strongly one way or the other.

The people that lean toward the first scenario are often labeled “needy”, “attention seeking”, “dramatic”, “weak”, “negative” etc.

The people in the second scenario are often labeled “strong”, “positive”, “normal” etc.

Here’s the problem. No matter what we do, we can’t make everyone happy. As you can tell from my blog and mental health advocacy, I lean strongly to the “bare it all” side of the road but I do believe there should still be a bit of balance.

I had someone who reached out to me privately to ask for some advice based on my experience in the mental illness fight. I know this person has struggled a great deal with mental illness and after talking to them more, it was apparent that it was a far greater struggle than I had known. To look at this person’s social media and life you would really think they had it all handled and here’s the tricky part, this person even shared about some struggles publicly (but only rarely and certainly not even close to sharing the extent of the problems they are facing). I was saddened that even I, a fellow mental illness sufferer couldn’t see through the “good”.

The problem with this is that there is a difficult line to find between putting up healthy boundaries by protecting your privacy and not airing your dirty laundry,  and putting up a false front by coming across as okay through fake vulnerability (sharing only the smallest bit of struggle to get you some support but not enough to make anyone uncomfortable or be labeled “needy”). Now, I know some people are embarrassed or don’t share just because they think sharing openly is unnecessary, but I do know this, if I hadn’t been sharing openly, not only would I feel completely stifled trying to fake my way through life surrounded by fake “friends”, but I wouldn’t have been accessible for the multiple questions I get about treatment and getting help because no one would know they could come to me. Because I share openly, people know I’m not uncomfortable talking about mental health and they can be vulnerable with me! There is nothing more rewarding for me in this journey then helping someone else, it really gives my suffering purpose!

If you are suffering and fighting in silence, I don’t blame you in the least, in fact there are a lot of times I wish I could go back and undo all my openness, because to be quite frank, as maddening as it is, I would have so much more “support” if my story wasn’t so “messy and complicated”. But every time I get to help a fellow mental illness sufferer or every time I get a true friend, I realize that as hard as this road of vulnerability is, it’s worth it.

I’ve written about suicide a few times before, but If somebody takes their own life or decides to tell their story years after the severe struggle, the response will be what it always is “Why didn’t they ask for help?”,  ” I had no idea they were struggling”, “they hid it so well”… etc. This makes me crazy! Not only is that shaming someone for being sick, but they are also taking the guilt off of their own shoulders (for not accepting mental illness) and placing it on the person that was only in that position of isolation because they where trying to make society as a whole comfortable by not talking about it! Seriously, you talk about your mental illness, you’re “labeled” and if you don’t talk about it you “should have”. There is no winning.

Look, as a mental health advocate I encourage openness but I can not and will not say it is the easy road. And all those people who make those ignorant comments after someone is gone… they actually aren’t there when you “ask for help”, their behavior doesn’t change when they “know you are struggling” (unless you consider distancing themselves from you as change, that they will do). It’s pathetic. Why would someone want to be open about their struggles when all it gets them is isolation, being misunderstood, and a label of “attention seeking”, “negative”,  “needy”, “dramatic” or “weak”?

I totally get the appeal of only sharing the smallest part of your struggle so as not to scare away the friends you do have. But once you start to really share the hardest parts of your mental illness it’s only the fake ones who fade away. The true friends will lean in and learn to understand. They will be the ones to come in and lift you up.

You don’t have to share your story, but man, I’m passionate about it. I know so many people are suffering in silence and if we all share our lives and our stories, maybe someday society will change, maybe we can make a positive difference for those who come behind us. Our children and grandchildren may grow up in a world where a mental illness is respected, treated, and supported instead of hushed, mocked, and ignored!

I’m not saying you can’t still be lighthearted and have fun with your friends and family. Please do! People need to see that mental illness doesn’t have a “face” that you can laugh and have fun and then be suicidal and crippled by anxiety later the same day! They need to see the “downs” too, not just the “ups”. You don’t have to tell the whole world, you don’t have to be a public mental health advocate to change the world, just start with your circle. Challenge yourself to be uncomfortable enough to be vulnerable. I strongly suggest that you find an amazing therapist to be a consistent stable support system for you during your mental health journey. Not only will it help you grow and develop healthy tools to fight the darkness, but it will also help you when you feel rejected from people you thought would be there for you that disappear when you are honest.

I’m also not saying that you have to share everything with everybody. There are a lot of things about me that you all don’t know. Things that are personal that aren’t relevant to my advocacy. There are things you should keep private that only need to be discussed with a therapist or a close safe circle. Those aren’t the things I’m talking about. But if you are struggling deeply and you feel like you can’t say anything because it will make the people around you uncomfortable…share it. It’s okay to be uncomfortable. That’s vulnerability, that’s working toward finding who your true friends are and working toward changing the world for a better future.

Keep Fighting,

Dawn Harris

Less Stable Ground

Ha. So much for that more stable ground I’d been enjoying.

I am unfortunately back on the downward swing here with my depression.

I know that my brain is telling me that it’s time to go back for more TMS treatments. I’m learning to listen to my body and to read the signs of decline earlier than I used to. Over the years of treatments I’m really getting a better understanding of myself and how I operate. But it’s still hard for me.

I struggle to get help when I start slipping like this. First, I think “I’ll just wait a bit and see, it might just be a bad day and I’ll probably feel better tomorrow”. Second, I think, “surely I’m not already declining, it’s probably all in my head, maybe I’m not trying hard enough, no one is going to believe me that I’m going downhill yet because they can’t see it”. The third thing that keeps me from getting help is money. Treatments cost money and we are drowning in debt already because of my many health issues. On top of all of those “reasons” not to reach out, I also almost immediately start that intense self blame game and feelings of “not worth it” rush over me. It’s really hard to fight for yourself when you don’t feel worth fighting for and you feel like a burden, and you feel like you’ve let everyone down, and you are utterly and completely mentally exhausted.

But I am reaching out. Because I’ve been on this ride before and it doesn’t get any better on it’s own. And as bad as this feels, it gets worse…much much worse without help. So I’m calling my doctor’s office first thing in the morning and going in for a treatment to hopefully stop this decline in it’s tracks and head back north.

My heart for this blog is to be a place where people feel less alone in their struggles with mental illness or chronic illness and also a place to educate those who are supporting loved ones with mental or chronic illness. My goal is to be 100% honest, yet my fear is that in sharing the absolute truth it may be discouraging to my readers. For example. For some who struggle with mental illness all they have to do is reach out to a doctor, start a new medication for about 6 months maybe a year or two and then wean off and continue on with their lives and the medication works wonderfully! I’m really happy for those people but that’s just not my story.

I cringe when I hear people who have had that experience or even those who haven’t but don’t really “Get” mental illness, telling people to reach out for help, telling them there is a medication to help…etc. I cringe because that’s not always the case. Yes, reach out for help, ABSOLUTELY. But sometimes you have to actively seek new treatments for a decade and still struggle every.single.day. Sometimes, they can’t get it under control like they all promise and sometimes all the commercials and well meaning friends (and even strangers) will tell you what it will be like and they couldn’t be more wrong. And friend, that is painful. Mind-numbingly painful. You start to wonder what your problem is? Why isn’t it working like it’s “supposed” to. And unfortunately you may even have family, friends, and most devastatingly, doctors who blame you for they way you feel. Shaming you into believing you just aren’t trying hard enough, or that you just need to be more positive, or try to exercise and eat healthier…etc.

Friends! These ideas are all good things, but even the very best things cannot cure mental illness!!! They can assist us. A healthy body helps when we are trying to heal our brains, but if the only “mental illness” they’ve experienced can be fixed by a brisk walk and drinking a kale smoothie and having happy thoughts about fluffy puppies then I hate to break it to them, but they didn’t have depression, they had a bad day! Again, these are tools to keep in your mental health toolbox, but they can not cure an imbalanced mind and anyone in your life who is making you feel less than just because they don’t have the answers to help you should not be part of your care team.

So if you’re new to the mental health journey, perhaps your story will be easier than some. Perhaps the first medication you try will bring you relief and your life will continue on. If that is the case I celebrate with you and recognize your struggle is still significant and you are brave!

But if you aren’t new to this fight. If you chose to be brave and reach out for help many years ago only to have that “help” fail you over and over again, if you have been on all the medications, going in for all the treatments, having all the tests run, bouncing from doctor to doctor until they have exhausted their resources and yet again come up empty, and your uniquely complicated brain still leaves them all scratching their heads in confusion, then this hug is for you. This big tight hug, is to remind you that it isn’t your fault that your brain is wired differently than the others, reminding you that with new medical advancements there will always be hope, reminding you that you are the strongest of the strong even though I know you feel so.very.weak. The truth is you haven’t given up, you are still breathing and that is a victory beyond what most people could ever fathom. I see you. I see you crying because you really blame yourself because it seems to get better for everyone else. I also know you know deep inside of your heart that you ARE doing the very best you can and you couldn’t fake this away for anything in the whole world. You are a warrior.

Keep Fighting,

Dawn Harris

More Stable Ground

Hi friends, I’ve been missing writing in this space. My computer went down but we are up and running again and I’m grateful to be back.

I don’t know about your personal journey with mental or chronic illness but mine seems to come in waves. Up and down, quite dramatically, even from one day to the next. The down being the deep that is the worst kind of pain and the “up” being less actually “up” and more “less severe”. Mountain tops and valleys. Only my “Mountain tops” are really just solid flat ground. I don’t really get to a happy place but “more stable” feels quite “happy” compared to the valleys. Does that make sense?

I don’t have bipolar but I do have severe, chronic, treatment resistant, depression that is debilitating. And I have a lot of up and downs that come along with it. I’ve tried so many medications and nothing helped at all. I’ve had ketamine IV infusions (a fairly new treatment of depression using the anesthesia drug Ketamine at low doses), I’ve also had 14 sessions of ECT (Electroconvulsive therapy or “shock therapy”), and finally I’ve landed on TMS (Transcranial magnetic stimulation) treatments.

Out of all of the treatments and medications that I have tried, the only two that had any positive effect whatsoever has been the ECT and the TMS. Unfortunately the ECT was quite invasive, EXTREAMLY painful, and left me with pretty severe memory loss so the doctors said it wasn’t safe to continue. That is when we switched to TMS. My experience with TMS and the positive effects from it have been more gradual than with the ECT (which was more “on” or “off” for me). But it wasn’t until my last two rounds that I really started to get the stability that I’ve been craving!

For most people getting TMS you go in daily Mon-Fri for about 6 to 7 weeks and get the pulses on the left side of your head for depression and the right side for anxiety. They usually give 5000 pulses at a power level of 120 (but go up to 140). We realized with my third doctor that these settings were just overstimulating my brain causing instability. So we set my own protocol. Only treating the left side, only 4000 pulses, and only up to a 90 power level and it has been so much better! Best piece of advice in this department is FIND THE RIGHT DOCTOR! My first doctor was pretty absent and my second doctor was a major pill pusher and kept thinking the higher the power and the more pulses the better. The doctor I have now has been amazing at listening to me while I listen to my body.

I just finished my most recent round of TMS two days ago so now I get a two week break before I go back in to see my doctor and get a maintenance treatment. I do have to go in for maintenance which is a bummer but if I don’t keep up with about 1 treatment a week then I slip back in the dark hole pretty quickly. It’s amazing how GOOD “okay” feels in comparison to the deepest darkest daily battles of depression. TMS isn’t a miracle cure all, or a one time treatment thing, but it has absolutely changed my depression battle for the good and makes what used to feel impossible feel much more possible and for that I’m so thankful.

It took about 7 years of ACTIVELY trying to find a depression treatment that worked for me… I wanted to give up a few thousand times in that time. Doctor after doctor offering hope, even promising results, but time after time every attempt failed. I’m still moderately to severely depressed everyday, but there is a bit of a lightness to parts of some of my days that wasn’t there before. There are tinges of motivation or anticipation that weren’t there before. It’s progress, and for the first time in 7 years it’s somewhat consistent. I plan to maintain the maintenance and then in 3 months time go in for another daily (6-7 week) round. Hopefully I’ll be able to build on what we accomplished this round!

Carry on my warrior friends, we are in this together even though it sometimes feels so frighteningly lonely. You are brave and your life is worth fighting for! Don’t give up on finding hope! New medical advancements are on the horizon we just have to hang on a little bit longer!

Keep Fighting,

Dawn Harris

Deep Darkness

I want this blog to be a place where others who struggle with mental illness and or chronic illness, can find support and encouragement, and also a place where others can learn about mental illness and chronic illness, but most importantly a place where suffering hearts don’t feel so alone. Mental illness and chronic illness have to be the most isolating things in the world. The up and down, the ability to function one day and the loss of function the next, and unless you’re the one feeling it, it’s very hard to understand.

I don’t know about you, but I find myself in a constant state of desperately trying to convince the world of the reality of the depth of the darkness that is mental and chronic illness. Sometimes I wish my illnesses could be seen on the outside, more than just looking tired or frail. Big, deep gaping wounds, bruises, dark circles. Sometimes I want to look as bad as I feel, my bloody body, scraping over glass and hot coals, unable to walk or stand. It might sound dramatic to those who haven’t experienced this kind of mental pain, but some of you are nodding as you read along because you get it. You really get it.

Some days the depression is so deep that I can’t even speak. I can’t even sit up. I can’t eat or drink. Somebody lays next to me, physically holding me so I’m not alone, so that I can feel something, anything, as the tears slide out of my eyes. Sometimes it’s a bit of a steady flow of tears as the hours tick by, other times it’s body wrenching sobs. And yet, I may have seen a friend or stranger just the day before or the day after. I’m sure I looked a little tired without make up and wearing sweats but I’m also sure I smiled and carried on a polite conversation. I may have been honest when you asked how I’m doing, I may have said, “I’m okay, I’ve been struggling lately with depression but I’m getting the help I need through therapy and treatments”. But they don’t have a clue. If I’m there, even if I’m honest, they can’t possibly grasp the depth of the struggle. If I’m not there and say, oh I’m sorry I can’t be there I’m not feeling well. Again, they can’t possibly understand what that means, because even the best intending humans can’t seem to grasp what they can’t see, and unfortunately you can’t see brain torture.

The reality is deep, dark, and ugly! Depression is so much more than a bad day or a negative attitude! It is when your brain steals your reality, fills you with only lies and pain, you can’t feel any connection to those you love most, you become so weak, you become numb to everything except pain, and you truly wish, even beg, to die. It is a beast. It is overpowering and all encompassing. If you are reading this and nodding along because your heart has felt this deep darkness too, I’m so sorry!

The thing we must hold onto is that the darkness does lift and even though, perhaps your deep depression, like mine, is often reoccurring. We are stronger then we feel. It’s vital that you have at least one person that you can tell the darkest parts to, someone who sees it with their own eyes. Someone who will laugh with you when you laugh and cry with you when you cry.

I’m going to end today’s blog with this poem I’ve recently come across that was amazingly accurate of my experience on this journey. The isolation is real and at times so painful it’s hard to continue on. But despite the suffocating depression, I’m still breathing and so are you!

Solitude

BY ELLA WHEELER WILCOX

Laugh, and the world laughs with you;

Weep, and you weep alone;

For the sad old earth must borrow its mirth,

But has trouble enough of its own.

Sing, and the hills will answer;

Sigh, it is lost on the air;

The echoes bound to a joyful sound,

But shrink from voicing care.

Rejoice, and men will seek you;

Grieve, and they turn and go;

They want full measure of all your pleasure,

But they do not need your woe.

Be glad, and your friends are many;

Be sad, and you lose them all,—

There are none to decline your nectared wine,

But alone you must drink life’s gall.

Feast, and your halls are crowded;

Fast, and the world goes by.

Succeed and give, and it helps you live,

But no man can help you die.

There is room in the halls of pleasure

For a large and lordly train,

But one by one we must all file on

Through the narrow aisles of pain.

Keep fighting,

Dawn Harris

New Year

Man, the “New Year” is always a hard time for me. Well, holidays in general are always a hard time for me. Some of it, is that my depression worsens around things that are supposed to be joyful. But mostly, I always wonder if it’s the last year I’ll have with terminally ill daughter.

As I reflect back over the last year and over the last several years I am overcome with pain and sorrow for all that we’ve endured. I know people say to think positive, to look at the good not the bad, and while that’s good advice, sometimes the reality is that there is way more hard than there is good. I’m not saying this for self-pity or even for your pity, but more just as a reflection and acknowledgment that it’s okay to struggle.

Good things can happen in the midst of sorrow and in the midst of hard and it’s important to recognize those good things, to hold onto those good things, to remember those good things. But it’s also okay to acknowledge the big, the hard, the heartbreaking, the losses, the struggles, etc. You see with so much illness- chronic, mental, emotional, physical, there is a deep isolation, a lack of understanding. Not because people don’t care, but because they just can’t understand what they have not lived.

I am lucky enough to have a few really great people in my life, number one being my amazing husband, number two my family, they are learning more about me and I feel closer than I’ve ever felt to them before, not to mention they really showed up for me this last year at a time when I needed them the most. But it also hurts to have lost so much on this journey. So many people just don’t understand, either they don’t want to, or they can’t, people who burn out, people who walk away, people who question the “realness” and the “gravity” of what we face, and it stings to my core.

This last year one of my closest “friends” called me up out of the blue one afternoon and accused my husband of stealing over 20 thousand dollars from them during a construction project he helped them with over 3 years ago. She was so angry she said she didn’t even want to discuss it and that they had already contacted a lawyer and they were planning to take legal action. I’m not sure there is a word or even a phrase to describe the complete shock and hurt I felt. We went through every last shred of paperwork we could find from the job to find what they could possibly be misunderstanding but we couldn’t find anything. Now here’s the thing. This job did go bad, I mean everything that could go wrong did go wrong, but never once was anything dishonest or shady on our part. We told them what was happening every step of the way. In fact, by the time the job was finished we didn’t get paid a single penny because even though we had done about $40,000 worth of work and we had put in over $11,000 of our own cash (that we didn’t have to spare!). We had sunk it all into the job to do our best by them, to be the people of integrity that we are. The thing that’s even more ridiculous is that all of this happened and they pretended that everything between us was fine FOR 3 YEARS! I’m talking lunches, hang outs, pool nights, birthday party’s, football games… I had never so much as had a tense conversation or confrontation with this friend and we were really close! Finally, after multiple threats that they would sue us and ruin us we talked to a lawyer, we knew we were innocent but had never had anything like this happen before so we needed guidance. He told us that not only were we innocent but if anything they would owe us money. He suggested we try to settle it out of court to save money, because even if you’re innocent you have to pay lawyer and court fees. So we asked if they would talk with a mediator, he yelled and complained and threatened some more before saying he would think about it. He agreed and someone we both trust found us a lawyer to work with. We contacted the lawyer and our “friends” never contacted us again. We don’t know if we’ve heard the last of them, but we suspect they finally realized that they made a mistake and don’t want to admit it to us or be found out in court. I tried reaching out once via a simple card, but it was not answered, so now I’m trying to find a way to move forward, to accept what I can not change, to let go of the injustice that we have faced. It’s been over 8 months since this traumatic, emotional, tsunami and the damage it has left in the aftermath has been devastating. Not only were we completely caught off guard, but the accusations are so far from the truth that if it wasn’t so painful it would be laughable. Now I’ve not only lost one of my closest friends of 10 years but we’ve also lost our mutual friends who I don’t get to see anymore. And because they are holding the lawsuit card we have to suffer in silence as they go on living these lies. The emotional stress set me back severely in my mental health and my physical health. I’m not sure I have ever felt so alone in my entire life. To lose about half of my “friends” ( you don’t have many when you’ve been sick for 9+ years) over complete lies and not a single one contacts you to even see if it’s true. It is devastating, absolutely devastating.

So this year beat me up and left me limping, but so have the last 9 years. Some people might say I’m negative when I don’t look forward to the “New Year”, but the truth is I’m not strong enough to look forward to a whole year. Maybe because they have all been “more than normal, exceptionally difficult”, but mostly I think it’s because I live a hard life. It’s okay to acknowledge a hard life. Yes, there will always be someone who has a harder life, but it’s okay to feel sadness over your own hard. It’s true, life isn’t fair. So just as I’ve done so many times before, I’m going to follow my mom’s sound advice and instead of looking forward a year I’m going to look forward one day, one hour, one minute, or even one tiny second at a time. Whatever I can handle. And I’m going to celebrate the good and I’m going to allow myself to grieve over the bad. I have no reason to believe that this year will be any kinder than the last 9+ brutal years, but I do know I can make it for each next second and so that is what I will focus on.

Keep Fighting,

Dawn Harris

Life Recap

ERP or “Exposure Response Prevention” is changing my life! It is the best OCD treatment I’ve ever had! TMS “Transcranial Magnetic Stimulation” is also a part of my regular treatment regimen and it has just been FDA approved to help treat OCD so it is a win win win win for me, hitting my depression, anxiety, OCD, PTSD all in one treatment with little to no risk of side effects! It’s still far from where it needs to be, but definitely seems to be moving in the right direction!

I’ve just started seeing a new doctor…yet again, which means a lot of new tests will be run over the next few weeks. If I had a dollar for every doctor, stranger, or even a friend that has described the last 9 years or our lives as a “living hell” I’d be a rich woman. But I will continue to seek out answers and healing because my life is worth the fight.

Hey you, yes you, your life is worth the fight too. Just in case you needed to remember that today.

I’ve battled so many illnesses, severe treatment resistant depression, anxiety, PTSD, OCD, multiple chronic illnesses, fibromyalgia, POTS, IBS, acid reflux, central sensitization disorder, multiple physical deformities and disabilities, faced terminal diagnosis of my closest of the close, lost 2 dear friends to suicide, lost one of my best friends to a manipulator, over 10 surgical procedures in my family and under anesthesia way more times than that, too many hospital stays, more doctor visits than I can count… literally hundreds (thousands?), 4 states of doctors, specialists, tests, and treatments, multiple rounds of physical therapy, years of counseling, sepsis, syncope, pneumonia, colon biopsy, hormonal imbalances, a ton of CT scans and MRIs, so much nausea and vomiting, spinal tap, spinal fluid leak, blood patch, EMG test, needle muscle biopsy, heart condition(s), constant headaches, EEGs, endometriosis, malnourishment, pic line and TPN, low blood sugar, restless and nightmare filled sleep every single night, 6 Ketamine treatments, 14 rounds of ECT, many ER visits, over 100 TMS sessions, biofeedback training, fighting to gain weight, slurred speech, loss of leg function, bed and wheelchair bound, Iron infusions, swollen stomach, swollen legs, swollen feet, body pain from head to toe, chronic fevers, so many meds, so many side effects, so many unanswered questions and so many unsolved problems. I could probably go on, but I think you get the idea.

Yet, here I am, 9 years later. Still fighting for my life. I’d be lying if I said it’s just because I’m too strong to give up. I have, on multiple occasions, begged God through sobs to just make my heart stop beating. I’ve said “I can’t do this” a million times. But I will never take my own life. I’ve seen and first hand experienced the pain it drenches those closest to the one lost in. So as long as my heart is beating I have no choice but to keep living. Because no matter how hard it gets, my lungs keep filling and emptying (even if only at 75% function) and my heart keeps pumping (even if it’s two sizes too small and functioning similar to a person in heart failure). I’m not fighting just for me, but I’m fighting for all the people who love me, I’m fighting for all the people who will hear or read my story and perhaps find the strength they need to also keep fighting. This life is so very isolating, but I see you. I’m with you. I’m for you. Don’t quit my friend, look how amazingly far you have come!

And maybe just maybe you will eventually come to a place where you dare to dream again. Where you dare to believe you have a future of more than pain, doctors, and mere survival. I’m getting there. It’s been a long 9 years, and it’s not even close to being over, but I’m starting to hope for a future that is more, where my life and this journey has purpose. Starting with you. Thank you for reading my blog, I hope you feel loved here.