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Month: October 2017

Dealing with The Constant Change with Lupus

Dealing with The Constant Change with Lupus

This weekend was a whole new experience for me. Many of us with chronic disease try to fight for any independence possible. Whether it’s going to the store alone or indulging in our favorite hobby. I, for once, had to let go of all reservations and recognize assistance was the only option. For the first time, my husband pushed me in my wheelchair.

It wasn’t a rented or a temporary one. It’s actually mine, prescribed to me by my doctor, because I need it. When it showed up I was not sure how to feel. Should I be happy that I can get out more? Should I be ashamed that I need it? My feelings were all over. I am a thirty-four year old woman that looks healthy but can hardly walk/ stand for long periods. It’s not just Lupus that causes this issue. I also have Joint Hypermobilty Syndrome and Fibromyalgia. The combination makes it almost impossible to do much without pain.

I don’t want to get lost, I am grateful for my wheelchair. My point was more that I never thought it would get to needing one. I thought somehow I would get better. Getting pushed around in my neighborhood on my family walk made me so anxious. I kept thinking what if the neighbors see me? Or what of people don’t think I really need it? I don’t know why I even care. My kids were so happy to have me with them. Their smiles and nonstop talking helped calm me. They seemed so okay with seeing their mom being pushed in her wheelchair by their Daddy.

I realize I need to be more like my kids. They just want to go! They’re so resilient. Anytime I’m unable to do something because of Lupus or any of my chronic issues there is no hesitation. They don’t get upset, they don’t tell me they wish I was a “normal” mom. That’s me, I want that. I get upset. I am embarrassed.

It’s silly really, why should I be shameful of this? The lack of control is obvious. The ever changing symptoms are constant. Nobody would choose this. All the the adjustments you have to make, the relationships you loose, the dependence created. I’d rather just not go out. No walking equals no wheelchair which means no dependence.

You know what really happens though? I miss out. That day is forever gone. Wasted. I don’t get to enjoy the night air or hear my kids laugh. I miss out on life. I’ve tried to be tough through this. I have fought. I will continue to fight but I have been humbled in knowing it’s okay to need help. I lean on my loved ones and let them know how very much their support means to me.

I have a wheelchair. I need a wheelchair. I am not limited because of it, I am getting the chance to experience life in a whole new way. I am willing to make the adjustments needed in order for my quality of life to be at it’s best. Maybe it’s not what I thought it would be, that’s okay. I get the chance to live at the best of my ability. I refuse to give in, I am not stopping. 

 

 

 

 

 

*****please be kind, wrote freehand with limited edits****

Bonding with Others who Have Chronic Illness

Bonding with Others who Have Chronic Illness

Most of the time when I sit here I simply write what comes to my mind. I am not a professional in any sense. I am just a person who created an outlet because I felt alone. It’s not that I don’t have loved ones that care, it was more like they don’t understand. I feel lonely and isolated. They don’t mean to exclude me, they just don’t get it. That has caused so much anxiety within me. I felt confused and almost ashamed of this nasty beast called Lupus. It has taken me up to this point to be open and unapologetic. I am ready to be an open book, I want to connect with others going through the same issues, and most of all I need to accept that this is not my fault.

Yes, I blamed myself for this. I played the could of, would of, should of game. What if I did this or that instead. There were so many questions that would swirl in my head when all of this first started. As my disease progressed I felt overwhelmed and clueless as what was next. Especially because doctor after doctor made me feel like I may just be a crazy woman. I, for sure, thought this could all very well be all in my head. I thank God I had the fortitude to not give up and advocate for myself.

The short story is this, I don’t want any person to feel alone when dealing with chronic illness. There’s a whole community of people that need to connect. We all need to lean on each other because we are the ones who truly get it. In the last month I have just laid it all out there. I have talked about my health with an odd confidence. In the strangest way it made me feel more in control. I have been diagnosed with a list of issues but the top four would be: Lupus, Fibromyalgia, Joint Hypermobility Syndrome, and IBS. I can finally say that without being scared of judgement.

A lot of people fear what they don’t understand or put down what they don’t know. Well, something I never thought I would need came this week, I received my wheelchair. This was a huge step for me, I have fought getting one. I was encouraged to move forward but I was scared. I didn’t want people to see me in a wheelchair and think I didn’t need it or even worse think I was disabled. You know what? I am disabled. I said it. I need the assistance of a wheelchair, I need help from others, I am unable to do daily tasks on my own, and I refuse to feel shame any longer. I need to focus on my quality of life. Lying to myself or being fearful of what others think will only hold me back from living MY best life.

So, I (kind of) went off on a random tangent. I figured if I have these thoughts running through my mind others may be experiencing the same. I am only one person trying to get through everyday with chronic pain (among other issues). I’ve realized how much I value building relationships with others experiencing this. People that without question after question know what you’re describing. You guys are my people, we get each other and I need that. The encouragement that together we can get through it.

Tomorrow is going to be another day that we all are blessed enough to live. We may not get to run outside, climb mountains, or simply clean our homes but we get another day. I am going to enjoy my children’s laughter, hold my husband as tight as my body allows, and indulge in the healthiest unhealthy food I can. What will you do? My hope is there is at least one thing that makes your day shine a little brighter.

Three Tips To Help Deal with Lupus

Three Tips To Help Deal with Lupus

Let me start off by saying that it took a long time for me to feel like I could enjoy life again. Not because I didn’t want to, but because I didn’t know how to with all the pain I was in. There were so many days lumped together that became a blur. All I hoped for was my pain to ease and my mind to clear. Time after time I just wanted comfort. I hoped there would be a day I’d go back to “normal” again. Then, one day I finally realized this is my new normal, this is my life, and I had to find a way to live it the best way I could.

I am not an expert when it comes to Lupus. I am just a woman who has it and tries countless things to live my best possible life. What works for me may not work for you. That is completely okay. Everyone’s experience with this disease is different. I just want to build a community where we can talk and be there for one another.

There is a lot of things I have changed in my life in order to adjust. Instead of giving you a long drawn out list that you barely skim through I want to share three quick tips that have helped me put my mind at ease. When I started progressing with Lupus I felt lost and very alone, even with loved ones around me, I still do at times. It can be very isolating to know something is wrong but not be able to figure it out. In my case, it took two years for a diagnosis and to be put on the correct medicines. I am not perfect, I have more setbacks than I’d like, but I am LIVING. I refuse to stop pushing, with these three steps I tend to be able to do that with a little more grace.

ONE: Listen to your body.

I know that seems pretty self explanatory but when you have Lupus your body/ mind can feel like its playing tricks on you. There are so many ups and downs, twist and turns, it’s easy to feel discombobulated. What may feel like a small headache can turn into a full blown flare, or you feel like you need a nap but skip it…because do you really need it?? You may think you can totally push yourself to do that extra chore or time with friends, but you end up being out of it for days, weeks, or longer. That’s the thing I learned from Lupus it’s never a couple hours of recovery when you misstep. It takes a lot of time to heal. It’s an exhausting disease, if you feel tired then sleep, if your body say’s no gluten then don’t eat gluten, if it hates the sun then stay out if it. There’s things you can do to try and prevent flares but it is vital you get in tune to what your body is telling you. Once you start listening to your body you’ll be able to communicate clearer to your loved ones and Doctors.

TWO: Don’t waste your time.

Lupus warriors have limited energy. A lot of times our days are dictated by how we feel. Don’t spend time doing things you hate or with toxic people. This was probably the hardest step for me. It is especially hard if you’re a “yes” person. I learned to focus in on what really mattered to me, what/ who I valued, and with those who felt mutually. It’s not worth it to constantly be making yourself sick because your loved ones don’t get it or to feel guilt. You have to learn to love you. There’s no other way. Time is precious.

THREE: Stay away from stress.

This may not always be avoidable but when it is STEP AWAY. Stress is almost a sure way to have a flare of some type. Evaluate what are absolute things you need to be thinking about and what you can remove. This can be from dealing with people to things. If it stresses you out and you don’t NEED it, delete it. I know it’s not always that simple but with practice it gets a bit easier. An extra tip is I clearly stated to all my loved ones that stress is a no-no for me and I didn’t want any part of it. They either respect it or don’t (if they don’t refer to tip TWO.)

Look, Lupus isn’t going  to magically go away. Although we all wish it would. It is a part of our lives that we now have to consider at all times. I love myself enough to make the adjustments needed to be a better warrior, wife, mom, sister, daughter, and friend. I hope you do the same. We are not alone, we have each other, this network of people fighting to live their best lives with a nasty beast called Lupus. Just keep fighting… KEEP GOING.

 

 

 

***Please be kind, wrote freehand with limited edits***

 

Is it Possible for Relationships to Survive Lupus?

Is it Possible for Relationships to Survive Lupus?

I was recently asked what has changed the most regarding my Lupus diagnosis. I replied “everything” because in reality that is the exact truth. There’s not a part of my life that hasn’t been touched in one way or another by this disease. I take medicine daily, I don’t go in the sun, I avoid being out of the house too long or at all, I lean on others more than I ever have, I lack energy, I eat completely different foods, and on & on. The list is long and it gets a bit depressing to talk about. After thinking about the question I realized there was one key word. What has changed the most... and I immediately knew it was my relationships with others. Simply said, the ones that matter will be there and those that don’t won’t.

Ok, okay. It’s actually not that easy.  There’s a lot of growing pains and heartache. There was for me anyway. I learned a ton about myself, the people I thought would be there, & the people that actually were. The thing is, nobody is really prepared to go through anything like this. The daily ups and many downs of a chronic illness. The constant cancelled plans because you can’t move without pain or the continuous need for help .The desperation for understanding with acceptance and unconditional love. It is a monumental type of thing to take on, you can’t half-ass your love for someone with this disease. That also goes hand in hand with the person experiencing Lupus not being able to put energy into something that will cause them hurt or stress.

Let’ just put this out there as clear as possible, Lupus and stress just don’t go… even more so Lupus and sh*tty people are a big o’ no no. Let me spell it out IT’S NOT WORTH IT. There are only so many hours in everyday. We (people with Lupus) sometimes (most of the time) only get a very little bit of time everyday to feel somewhat good. I will be damned if I am going to waste it on people who don’t value me or me not value them. What would be the point!? Spend your time with those you love and love them fiercely!

I was really surprised by the change of most of my relationships. There were two people that didn’t surprise me at all and I am so very thankful for them. There is one person that has been there for it all, the very worst of the sicknesses and aches. The person that will pick up the pieces when my brain just can’t. In all honesty, I only have a handful of people that continuously FOUGHT to be by my side. No matter how hard I tried to push them away. When I say a handful, I mean exactly five people.

I use to think you needed an army of people or the more that were in your corner the happier you would be. Although my circle has always been small, it’s teeny tiny now… maybe like half a circle. I started to recognize patterns in people and it zapped my energy. I felt completely drained after being around them. There were also the people that if I wasn’t able to offer some kind of value to their life then they didn’t need me. Like me, just being low energy and sick but still me was not enough. It was such a confusing time. Not only was I learning I have some serious health issues but I was also learning how to deal with the unexpected change in all my relationships.

There were some people that I firmly believed would always be by my side no matter what. That there was no way in heck we weren’t going to be an active part of each others lives. but somehow, someway they just weren’t there. It’s as though they vanished. Why? I don’t know. They say one thing. I see another. I still love them dearly but those relationships have to fall to the side. I realized I HAD to be selfish and if those relationships could not survive my health issues then maybe they weren’t as valuable as I thought.

So, What is the biggest change since Lupus has slowly taken over my life? The people I have in it. I am more aware who I spend my time with, who I let in. I have a clearer picture of the people that love me unconditionally and are okay with me being vulnerable. I know who I can lean on and trust. 

It’s another one of the twisted weird gifts Lupus has given me. I’ll forever be grateful for each and every person that has been there for me through this. That love is something I can’t ever put into words. For them and for me I am going to keep fighting like the warrior I am.

Lupus POOPUS, Finding The Positive

Lupus POOPUS, Finding The Positive

I have to say, I would of never taking this many leaps in my life if it wasn’t for Lupus. Uggghhhh, You ever get tired of hearing the name of your nemesis?? In my case it’s Lupus POOPUS. I know..I know such a clever play on words. That’s what happens when you have three kids and have to explain the challenges of poopy Lupus. Damn! There’s that word again! Before I even knew why I was experiencing so many issues I decided it was time for my outlook to change. I gained the greatest gift through my hardest trial.

Just picture me, a mom of three, looks perfectly healthy (maybe even fit to some), slender, tall, active with my children. I take pride in my family and household. I chose to be an at home Mom from the time my oldest was born. I did ALL the daily tasks that makes a typical home run. I was vibrant and sassy. I played with my kids, dance parties in the living room, why not!? Playing sports outside, duh! Going to the park, always…

Then, a slow progression, that I desperately tried to ignore took over.

The active, playful, keep everything in order mom became the no energy, fatigued, always in pain, laid out on the sofa mom.

This is the woman that prided herself on a clean home and helping her kids with their homework every night. I became lifeless. It hurt to move, everything became a daily challenge.

I know it sounds dim. This isn’t for the faint of heart, for the ones that want to sulk. It will eat you alive if you maintain that perspective. I could tell you all about my hair falling out in clumps or being in severe pain after each shower (yes, all those movements cause pain), I can focus on my fingers hurting all the time (even as I type) along with every other joint, I can complain that I can’t sit anywhere for long periods (esp in vehicles), don’t even get me started about having to dodge UV rays (I’m basically a vampire), or lastly (for the sake of this post) how I’ve had to change my whole lifestyle including my diet. Yes, I could talk about all that, in great length actually but what the heck does that do for me, nada! If I am being true to myself and who I am all this has been the most twisted gift I have ever received.

The feeling of no control and not being able to live fully gave me the beautiful perspective of how valuable LIVING is (DUH! you’d think I already knew that concept). Not just being alive but actually living. Making conscious choices for my everyday and finding the good. Look, we all have things to be upset about. WE ALL HAVE A STORY. Who says mine is easier or tougher than yours? It’s up to me to say, Girl get it together and live yo life! (side note: I purposefully put yo not an error) I started to see things I took for granted. The smallest things made me so freakin happy.

As I am writing this I kind of giggle. One of the things that make me super excited is whenever I find out something I love is gluten-free. This can be make-up, food, hygiene products, whatever…. I never realized how much of our daily lives have that one ingredient, and that one ingredient can cause me a whole lot of being  in uncomfortable pain. Another thing is whenever I go to a Doctor’s office ( bc I am always at one) and they have comfy chairs. I get giddy like yeeessss my body is going to ache a little less from this. I mean, it really is the small things!

I was forced out of my norm. I know I was not doing my best, I know I was just going with the flow not pushing myself to achieve. I oddly feel I am more positive due to my experience. I see the value in easily getting out of bed every morning or being able to go grocery shopping, just being able to be active in any sort of way is a gift.

There has been a lot of trials but more triumphs. Specifically in my relationships with my loved ones. I have been able to love harder, my circle of people got tighter, I have MY tribe. The ones that refuse to leave my side. There’s no greater feeling than to know you are loved even when you’re in your most difficult stage of life.

I am amazed at how much Lupus POOPUS has changed my life. Not the parts of my body that hurt or the adjustments I needed to make but instead my appreciation for everyday. I fell in love with myself. I love my husband and kids more. I repaired relationships and let go of toxic ones. I put value into what I put my energy toward and refuse to waste on things/ people that don’t matter.

In a crazy way Lupus POOPUS has forced me to find what makes me happy. I am a blessed woman. Lupus is NOT my burden, it’s given me strength. I will LIVE with it every day with pride and awareness. I have forever been humbled but I am learning to handle this journey with grace. Lupus does NOT define me, I define Lupus. I am a warrior!