I Am Trying To Accept My Reality

These past few months have been eye opening for me, and not in a good way. It’s now been six years since being diagnosed with everything, and it’s finally setting in that keeping up with my health will never stop.

I’ve found that there are never breaks; it’s an endless cycle that I have to keep up with. Every six months, I see my rheumatologist for five weeks straight to get my gel knee injections. At least once a year, I know that I’ll have to go to a surgical center to have the nerves burned in my neck. This year, I was the very lucky patient who went twice for nerve burning, both in my cervical and lumbar spine. For months, I had both my rheumatologist and pain management doctor trying to help me with groin pain that extended to my lower back. I go to therapy every other week, and I go once a month to be seen by a nurse practitioner for my mental health meds. The list goes on, but it’s hurting me to write about all of this, so I’ll leave it there.

I have woken up many mornings just wondering what would happen if I stopped from the exhaustion of it all, but I know I can’t. If I do that, I’ll wind up having to start all the way back to square one some day, and it would only make life that much harder.

All I can do in this moment is to carry on and understand that this is how it is. I’ve become a stronger person because of it. It’s funny that “strong” is the only word I can ever come up with when thinking about what I’ve been through and what it’s made me into.

Moving into 2021

We are nearing 2021. It’s so weird to even type that out because, in a way, I’m still waiting to live my year of 2020. Personally, I had really high hopes for 2020; I felt like it’d be the year that I would start over, find inner peace and happiness, and figure out what I was meant to do here on Earth.

Since becoming ill, I feel like I don’t have an identity nor importance. I had a therapy session recently where I spoke about society identifying us by our careers and not by what kind of a person you are character wise. I was reminded that I tried working while very sick, and it destroyed me. I often forget that part. I gave it my all. It made my mental and physical symptoms that much worse, and I couldn’t do it anymore. I didn’t decide to not work for fun; the reality was that I couldn’t bear it anymore.

Why am I so hard on myself? I believe it’s because I still have to accept who I am now; I am disabled, but I so rarely use that word. I’ve accepted my diagnoses and all that has come with it, but I’m still trying to figure out who I am at this point in my life and moving forward. I’m more than just a career title; I know this because I would never look at my friends who are mothers and think any less of them because they weren’t physically going to a job each day. So why can’t I look at myself in the same way? Why can’t I see value in myself? It’s hard to look inward; that’s why therapy is one of the most difficult things you can ever do.

I’m still on a mission to find things that I believe will give me purpose. I’m taking this goal from 2020 into 2021 with me, hoping that I’ll have a clearer mind. The fear and uncertainty of this year with the pandemic left me with too much anxiety and no concentration. I couldn’t focus, only worry. Inner happiness was found, to a degree (thank you friends for having little ones that can make any day better). I found courage within to file for divorce when that’s the last thing I ever wanted in life. With courage, I found strength to exist alone…something that I hadn’t done in years.

For anyone who also planned to do a lot in 2020, I am truly sorry and feel for you. If there is anything that we can say 2020 did for us, it reminded us of what’s truly important in our lives and what we so easily take for granted. It gave us that time with our families that we usually don’t get to have. It showed us the beauty of nature and how we should appreciate it more often. 2021, please don’t be another shit show.

Are You Kind to Yourself?

I don’t think that I was ever kind to myself, even as a child. It’s hard to admit this kind of thing; it’s painful to reflect on your past and see that you’ve never treated yourself properly. It also leaves me wondering why I continue to allow such a thing to happen.

I don’t like to put blame on others, but in all honesty, I do feel deep pain when I think about how I was never raised to appreciate myself–pretty or ugly, thin or fat, and smart or fairly smart. Maybe it was the timing of when I grew up. Life today is filled with parents raising their children to be body positive and accepting, but that wasn’t the case then at all.

I was kind of just expected to do well in things, and it was not in my parents’ nature to make a big deal if I did do really well on a test or succeeded in anything, really.

I did get straight A’s. I went to college for free my first two years on a scholarship for graduating in the top 15% of my high school class. I graduated college with the highest honors. I knew this was an accomplishment, but I still didn’t feel as smart as others. I wasn’t ugly in my eyes, but I felt ugly compared to others. I wasn’t fat, but I didn’t fit the mold that society had created for me to fit in. I didn’t like sports, so I danced for 10 years instead. I wasn’t the worst dancer, but I also was definitely not Juilliard material.

I couldn’t find anything that I was good at or liked about myself. No matter what I achieved, I still didn’t think that was good enough. I would internally tell myself that I was a nobody, that I hated the way I looked, and that I hated myself as a person. I had personality characteristics that others would define as meek or lacking confidence, and I read deeply into that and believed it.

Through all of my twenties, I was anxious constantly, afraid to make mistakes at my job, and if I did, I couldn’t stop thinking about it. I’d say sorry over and over again, most times completely unwarranted, and I continue to do this in my life currently. It’s a hard cycle to break, and trying to undo thirty something years of seeing yourself this way is difficult.

You would think that I would have learned to be a bit more compassionate and sympathetic to myself since I became ill, but that couldn’t be farther from the truth. I took this situation, and I found ways to dislike myself even more. I was mad at my body for failing me. I was so depressed and feeling ugly on the inside that I told myself I was disgusting on the outside too. As I was trying different medications for the first time and also experiencing side effects of those medications, like weight gain, I was mad at myself for not being able to control it.

The only thing I can ever remember saying to myself that was remotely positive was that I was strong. It did take three chronic illnesses and two mental illnesses for me to see this. It took endless procedures and tests and horrific pain, but it’s the start of me trying to accept who I am and make something optimistic out of it. After being told by doctors that I was strong because I chose not to be put out for procedures that you normally would be put out for, that’s when it became apparent that maybe I wasn’t as appalling as I had told previously told myself.

It may only be one word that I’ve managed to let myself believe, but if I can take anything positive from this journey that I have been led to take, it’s that I saw the depth of how much strength existed in me. It came out because I was in the worst situation of my life, and for once, I acknowledged it instead of twisting it into something pessimistic. That one word was so impactful to me that I created a tattoo to put on my body that means to me “female strength”. Whenever I think I can’t face one more battle, I look down at my arm, and I am reminded that I can do it and get through it.

I hope that as time carries on, I am able to speak to myself in a kinder way. I may have only told myself one nice thing in my thirty-four years of living, but it was a word so powerful that I actually listened to it.

Dreams and Aspirations When You’re Ill

If someone were to come up to me right now and ask me what dreams or aspirations that I had for myself, I’m not sure how I’d react. Sadly, these type of questions are triggers for me. Any questions pertaining to a career, or family, or what I do in my free time agitate me because I’m so uncomfortable with myself. Even if I’ve accepted who I am now and the journey that I’ve been put on, this type of small talk still manages to get under my skin.

Normally, people might respond by saying that they aspire to travel around the world; others might hope to move up in their careers. I thought that I finally had one of my dreams come true of getting married, but just this past year, that dream of mine was destroyed when my husband told me he thought it was better for us not to be together and that he didn’t have feelings of love for me anymore. Side note…we were together for 8 years, and out of that time, we had only managed to be married for one year.

I thought that I had found someone that loved me and was willing to be there for me, for better or worse, and was going to be my partner for life, but I was greatly fooled. I, simply, don’t believe in divorce, especially when I feel problems can be worked out. While it was never said directly to me, I know that my illnesses had a lot to do with it, and I could sit here and hate the universe for putting these diseases on me, or I could take this as a life lesson and move forward. I have chosen the latter, as much as I hate the idea of accepting a loss so great that it makes me feel like I have a hole in my body.

For the past year, I have done nothing except try to live day to day. Inner demons have told me that I’m unlovable. Some days, I’ve thought to myself that no one would really miss me if I was gone. If someone could toss me so easily when we had a almost a decade of memories, I’m nervous that going forward, people will leave me again.

My current state leaves me with small aspirations like getting through a week where I have multiple appointments; I aspire to push myself to get up every single day when my brain tells me not to. I don’t tell people about these, not because I’m embarrassed by it, but mainly because these would not be relatable to most.

On the other hand, I did dream big that 2020 would be the year in which I found my purpose here on Earth. Guess what? There are about four months left in this year, and I still have no clue what it is. I think this year has pretty much been a wash for most people; anything that anyone had set out to do or accomplish was affected by the pandemic. Maybe I’ll be able to figure out my purpose still, and maybe I won’t. I hope that one day it does become crystal clear though. Remember to keep dreaming, even if it’s the smallest thing you can think of.

Being Happy When You Are Ill

I was reading someone’s blog when I came across this question:

What do I need to feel happy on a day to day basis?

At first, I read past it, but it made me stop to think a little, and I thought it might be something interesting to explore.

I’m not the average person; I no longer think or live like the average person. I am someone who lives with illnesses, anxiety, and depression on a regular basis. I have had to stop working due to this. My goals of the past are no longer my goals of the present. The things I worry about are far beyond what others might have to think about.

My mood? I’ll just say that it’s taken years of practice now to fake that I am happy and live a life that I enjoy. Parties, social outings, and even just being around family are daunting. I’m so good at pretending to feel well that when I look at my handful of pills in the morning, it seems almost surprising. The truth is, I need all of those pills just to function at even a milder capacity than others.

If trying to figure out what I’d need on a daily basis to make me feel happy, at a minimum, I would say knowing without a doubt that someone cares about my life. If this sounds abnormal or pathetic to you, I’m sorry that you can’t understand it.

There’s a difference between depending on others for your own happiness and depending on others to feel like you have a place in the world.

With the depression that comes with my illness, I’m often confined to the ruminating thoughts in my head. Those depressive thoughts range from feeling like you are a nobody anymore in society to pure loneliness. I feel like I’m just a body getting out of bed each day only to do the same exact things that I did the day before.

If there was just one person, such as a friend, family member, or significant other that could tell me each day that I do bring something to this world and mean something to them, my life would be better. It would be a daily reminder that someone cared enough about me to reach out.

When you become ill, it’s very isolating. You have to cancel on people a lot, and you may lose people along the way who have a difficult time understanding.

In addition to that, I would have to say that I need my dog in my life to help me feel happy. A lot of people don’t understand the bond between a dog and their owner; I didn’t until I got one who rescued me at the time that I was rescuing him. He makes me laugh and gives me unconditional love, which is hard to find in people. He feels my mood at every moment of the day and adapts according to it. If I’m sad, my dog will be very attached to me. If I don’t feel well, my dog will lay down with me for the whole day and sleep with me.

There have been a lot of mornings where I haven’t wanted to get out of bed, but since I got my dog, I’ve had a reason that I NEED to get out of bed. I have to take care of him by feeding him and walking him. By that thinking, he NEEDS me to physically survive, while I need him to be the thing that pushes me to get exercise, get sun, and take a shower. If I wasn’t accountable for him, I think that I’d be in a very horrible mental state.

What this boils down to is that I need things that can show me compassion and love in order to keep myself happy. As long as I have those two things day in and day out, I know that I’ll be okay. It really says something about the type of person that I am. I try to be that person for everyone that I am very close with; I do daily/weekly check in’s and make sure that they know that they matter to me and that I love them. I give it out because that’s who I am, and I guess deep down, it does really matter in my heart that I receive something similar.

Of course, I do NEED food and water to keep me happy. (I get hangry.) However, aside from that, these are the things that truly matter to me. All things of materialistic nature I could do without.

What Do You Do For A Living?

It pains me that America has become a society where we now care more about what you do for a living than who you actually are as a person. Some might argue that they are their careers, and while I understand that to a degree, everyone still has their own personality and characteristics.  You are a human being, who was given feelings and emotions and have likes and dislikes for a reason.

As someone who is chronically ill, the question of what I do career wise (and it’s usually the first one to be asked), makes me speechless. It’s not the question that makes me uncomfortable; it’s the mere fact that I don’t know how to go forward from here.

This one question unravels one more and then sends me deeper and deeper down the rabbit hole. I, first, have to announce that I am sick, and I’m sick enough to where I don’t work. The confusing part is people cannot grasp this, no matter how many ailments I describe or the severity of them; it all comes down to me looking like I’m perfectly fine on the outside.

After I get the confused, one foot out the door look, I state that it took me three years of fighting for myself to be approved for disability. At this point, they may or may not understand that this statement means that I have some kind of money coming in, but they still think I should be able to work.

What I then do is describe what my last full-time job was before becoming ill and the toll of trying to work with my conditions. If the person is still standing in front of me after I’ve said all of this, then I will go on to say what some of my favorite hobbies or current interests are.

The main point I’m trying to make here is why can’t we start off by asking what someone likes to do for fun or where their favorite place to eat out is? Why can’t the career question come after you have started to get to know the person?

Our culture is one where everything is always on and moving forward. We feel like we can’t waste a minute of our lives on someone who, ultimately, won’t fit our criteria. Saying you don’t work or don’t work because you are unable to is associated with negativity. You’re either thought of as being lazy, a gold digger, or you have no life goals.

I’d say the majority of people will believe that you chose the path of not working. It’s rarely ever perceived as this life situation happened to you, and you’ve had no choice but to adjust to it.

Personally, I care more about how someone treats me or others above what their job is. You could have the most meaningful, impactful career and be the biggest asshole to people.

Why has our society succumbed to this thought process?

It’s very confusing to me, and I think about it a lot more than I should.

The next time you meet someone for the first time, I challenge you to not ask them about their jobs/careers until the end of the date (if you’re dating) or towards the end of the evening if meeting new people through others you know. You might just see that human beings are quite amazing, even without knowing what they “do for a living”.

My Latest Sjögrens Symptom

For anyone who has Sjögren’s, I was recently surprised when towards the end of the day, my eyes were hurting so badly.

I couldn’t look at a screen, be it a phone or the tv.

I didn’t know whether heat or ice would be the better option, so I tried both.

I used eye drops that I had, but I had no relief.

As those of us who experience any kind of illness can tell you, I did the worst thing possible and began googling. Normally, I wind up stopping the research after just a little while, mostly due to the fact that I read about horrible secondary illnesses that it could be or become scared of what tests might have to be done.

This time, I landed on an actual source of help. It had a few at home things to try and was helpful. The first thing I found out was that this could have begun due to too much “screen time”. I had initially figured that maybe it could have had something to do with that, but I really didn’t think I was on my phone or computer any longer than usual. Next, there was a recommendation to buy blue light glasses, which happen to be everywhere right now. After reading from a few different sources, it became clear that there wasn’t any medical evidence to back up that blue light glasses did help from straining your eyes; it was merely just people giving their opinions that they felt a difference. Needless to say, there were no blue light glasses purchases for me that night.

I then continued to read on, and it said to buy “Preservative Free Lubricating Eye Drops”. I looked at the bottle I had just used, and nowhere did it say that it was preservative free. I wondered why my doctor never specified this. Perhaps it’s something that an eye doctor would know more so than a rheumatologist. It didn’t really matter because I don’t have coverage for any type of eye exams, so I figured K would try to see if these specific drops helped any.

I bought Bausch + Lomb Soothe Preservative-Free Lubricant Eye Drops, Box of 28 Single Use Dispensers at just under $10. They were the cheapest kind with the highest ratings. I’ve been using them for three or four days now, and I have not experienced that overtired, sore, throbbing pain that I had prior.

I guess that small detail about them having to be preservative free really did matter after all. I wanted to let anyone know who may experience pain like I did that this might bring some relief to you. The internet can lead you to a lot of fallicies and dead ends, but sometimes, it may also lead you to a helpful answer.

The Hidden Trauma

This past weekend, I was showering when I saw what looked to me like a piece of lint on my body. I pulled it off of me, and there was blood.

Trying to add it up in my head took me a few seconds, and I held the “lint” up to my face only to reveal that it was a tick. My first reaction was that if I had been bitten, I needed to put the tick in a container to show the doctor.

I reached outside of the shower, grabbed a tissue, put the tick in it, and I turned the shower off. I started hysterically crying and from there, I couldn’t stop for about 30 minutes.

In 34 years, I have never been bitten by a tick. New Jersey is very prone to ticks, but I managed to get through life without getting them on me. I wondered how long this tick had been on me.

I was googling like a mad woman, with information saying that if it had been 24 hours, there was a likely chance that disease could have been passed on to me, depending on what kind of tick it was. My final thought was that I couldn’t handle another illness on top of what I have already.

After I got my mind in the put the tick in the container and finish showering mode, I just continued to sob. It became clear to me that my experience all of these years with my various illnesses had done a lot of unseen damage.

I like to think that I’m tough; I try to not complain and often times don’t realize the amount of pain that I’m dealing with because I have tolerated it for so long. However, in this moment, I understood that maybe my strength was being confused with burying my trauma.

When you take lots of medications and deal with mental and physical pain, you kind of shove everything you are coping with below the surface. This time, it just hit me in the exact spot to where I became exposed and my walls I put up cane crumbling down.

I know I’m bound to be diagnosed with more things along the way, and at this point in my life, I don’t think I can take another hit. That I now know.

I was going to immediately going to a quick care when it happened, but knowing I have an appointment this week with my rheumatologist, I figured I would give it a few days and talk to him about it. I know that I worry excessively. I know that I tell him every single ailment that I can feel going on, but he actually listens and I am so grateful for that.

I can only hope that he doesn’t share the same concern about it as I do.

When I first began seeing doctors for the health issues that I was having, I would have never pushed. I would have mentioned whatever was bothering me, let the doctors respond, and I’d do whatever it is that they said or recommended.

As time went on, and I felt like more and more was being brushed off, I actually gained a voice. Being silenced had the opposite effect on me than it should have. If one doctor wasn’t taking me seriously, I proceeded to the next. If another doctor only felt an x-ray was necessary and it came back that everything was normal, I pushed for the next test.

The message here is that we know our bodies best; we are the ones who have to live in them and suffer if we experience pain. A doctor can say that a test showed nothing, but ultimately, I can feel inside if something isn’t right.

Take my knees, for example. I started to have swelling in them, extreme weakness, and deep pain in both of them, right around the time of my diagnosis, and the pain hasn’t stopped since. I was told that it had to be my fibromyalgia. Nothing abnormal came back on my x-ray, the multiple times that various doctors sent me. I tried gabapentin, Lyrica, Cymbalta, and Voltaren over the course of a few years, all while the pain persisted.

Certain days, I would randomly feel throbbing pain. Other days, my knees would be weak, and I’d have to wear a support brace. Ice felt good, but it was ice–when it melted, it was nothing.

I eventually got to a point a few months ago where I told my pain management doctor that the pain would just not go away, and I explained how deep into my knee the pain went. He had already done an x-ray, so without hesitation, he told me to go get an MRI. A few days later, I received the results, and to no surprise, they actually found things going on. I felt relief at the fact that I knew something was there, and it felt like I was being validated. At the same time, I felt upset because something did show up.

Without using medical terminology, a cyst was identified in one of my knees. My doctor also told me that it showed that my knees were lacking the fluid necessary to properly move my joints. I was told that as I got older, I would develop horrible osteoarthritis if I didn’t take precautionary measures now.

Genvisc is what my doctor suggested. It’s a series of five gel injections. I go once a week to get them. Another term for these shots are “chicken shots” because that’s where they come from. The injections are actually hyaluronic acid; this is injected to replace missing joint lubricant. I began getting these right before the pandemic, but I had to take a break after shot number two when things became bad. I am going for my last shot this week.

I was told originally that these shots would last through the summer, and I would need to continue to get these. Until when? I’m guessing eternity. Have they worked? To a degree, I think slightly and slightly is better than no.

If you want to know how bad they hurt, I’ve had varying scenarios. The first injections, I passed out, and I have a very high pain tolerance. The second injection was better, but I couldn’t walk that day or the next. After the injection, it feels like your knee is so full that it could snap while walking. It’s partially numb, partially full of pain, incredibly difficult to walk on without being in pain, and although I’ll continue to get these, I wouldn’t say it’s an easy peasy little thing to get through.

By the third injection, I was expecting the worst, but that one wound up being my best. I was able to walk around a little that day, unlike the prior injections. The fourth one gave me SO much pain. I actually bruised from those injections. So, my fifth one will be a mystery, as all of the others were unpredictable.

I feel a few different emotions about all of this. Why couldn’t I have been heard the first and second and third times I complained about my knees? Why did I not hear about these gel injections until five years after my diagnosis. Why was I only presented with this type of treatment after another doctor of mine pushed for further testing? I’m not angry by any means, but the message here is to keep pushing for yourself. Keep advocating. The only person who can truly describe what’s going on is you.

Changes

I was able to download a copy of the e-book that I recently posted about that I’ll be featured in. I got around fifty pages in before I became antsy and started to search for my story. There was a lot of anticipation there; I hadn’t read my story since I was asked to look at any editorial changes that had taken place. Before that, it was my submission back in 2016.

The title of my piece is called “Wishing I Had a Heads-Up on My Autoimmune Illnesses”. Upon re-reading it, what struck me was the sentence where I said I had been suffering for a year and a half. A year and a half? If I was writing now, it’d say five years and seven months. My journey oddly still feels new while also feeling like I’ve been put through the wringer.

Reading that made me feel deep emotions of sadness while feeling proud at the same time. I felt sad because it took me back to my start, when I was so unsure and scared. It made me feel like I was living that part of my life again and struggling to figure out how I was going to get through each day. The sense of pride came from looking at where I was then and where I have managed to get in just a few years.

I’ve gone through many procedures, tried countless medicines, tried doctor after doctor, and found myself thinking many times that not living anymore would be less painful. While I am still trying different medications, I have a core set that seems to be keeping things under control. I eventually found myself a small crew of doctors that are here to support me and don’t discredit my pain. All of the procedures done were well worth it; all of the tests rendered to me helped to paint the picture that every symptom I’ve had is a reality.

I think different areas of the piece are reminders of the growth and acceptance that I’ve had over this time. There was a point, after this was written, where I realized that I was mourning the death of who I was prior to becoming ill, and I went through that cycle a couple of times, going forwards and backwards before ultimately accepting who I am now and trying to be at peace with it. It shows me how going to therapy and talking openly about everything that I am going through has helped me. I no longer try to hide the fact that I can no longer work or that I suffer from different mental and physical illnesses.

I no longer think about the life that I could have had; I now choose to focus on a life I can live, even if that means adjusting things or planning ahead. The most recent thing plaguing me in life is trying to figure out what I can contribute in/to the world; I’m spending a lot of time seeing what kinds of things make me happy and how I can make some kind of an impact.

This leads me to the book.

What started out as a small writing submission to someone has lead me to being a published author. Writing prompts on The Mighty took my stories to hundreds of thousands of people. I received comments on my work from people thanking me for getting it right on the message I was presenting. It feels so amazing; I never thought I could do anything like this. I grew up so shy and not being very open to many people.

I feel passionate about telling stories from the viewpoint of those of us with invisible and chronic illnesses, and I am going to continue to pursue it.

I’ll end with this quote:

“The man who moves a mountain begins by carrying away small stones.” ― Confucius

I like to think that these small achievements are adding up to something great!