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Sunday, October 22, 2017

The simple things

When you are fighting with an invisible disease nobody else understands the struggles you face. We all go through life doing little task day to day. Some of these are things you do everyday and a millions times a day. You honesty do some of them without really being aware of the energy spent doing it.

Yesterday after my shower I sat on the edge of my bed and began to put some lotion on. A task that frustrates me because I’m reminded of how dry my skin is most likely as a result of my disease. My skin cracks open and gets very very dry and rough in some spots. It’s a loosing battle that I doubt I’ll ever win. As I am doing this I notice I need to trim a toanail.

I literally struggled for 30 minutes trying to actually reach my little toe to cut the nail. Each position I tried brought more pain, I couldn’t turn my ankle in a way as to gain good access. I became so frustrated that I couldn’t complete such a simple task. Something most people probably do without a second thought.

I never really found the right angle, I gave up. I don’t like giving up and I definitely don’t like asking people to do things for me. I feel so useless when I can’t complete a simple task like that. How many millions of little actions do we complete in a day, why won’t my body let me do these things without screaming at me?

Well, I have started to believe that this is meant for something bigger. I refuse to think my body was just suppose to fall apart on me with no purpose behind it. I am choosing to believe that I am meant to reach out and help others. I hope to continue to see support and gain even more. I hope you all follow me on this journey.

One day I might not be able to cut any of my toenails, and maybe not even put on make up, but as long as I have a voice I will be standing up to #kicksomeAS  I hope to have an army of warriors behind me. Here’s to your day, making it through the simple things. Get out there and be a Warrior!


Monday, October 16, 2017

My Disease and it's impact on my family

Sure, it's easy to sit and talk about what I am going through. All my symptoms can be rattled off and placed on a list. Many of those can be treated with medication or controlled with lifestyle changes. What about the darker side of this illness? The side maybe even I am not qualified to speak on, as I am not an outsider, I am a suffer.

My family has been impacted and this is another reason exist. Not just for those of us who have the invisible illness, but for the loved ones of those as well. A long time ago, my children still very young began to suffer from the effects of my health. I was still in my twenties when I couldn't really tolerate pressure and constant touching. My children very young, 2,4,6 years old.

They still want momma to hold them and cuddle and play. By the time my youngest was in school,  5 years old I really held my children or played with them and was quick to move them when they climbed upon my lap. I just couldn't handle the pain. Mommy was always saying "I hurt to much right now, that hurts."

The bigger they got, the harder it was. I complained about not being about to do things, was always tired and feeling bad, needed them to understand I just needed their help. Instead they didn't understand why mommy was so angry and fussing all the time.  Our relationship dwindled to be far from what I ever dreamed my relationship with my kids would be.

They resented me, I struggled with depression and at times acted out by voicing my frustration for my kids to hear and see. I allowed them to feel as though it was somehow their fault my life was so bad. I didn't realize this was happening and until it was to late never understood my depression was killing my family.

I still don't have any idea how children are supposed to understand this. They are now 12, 14, and 17 years old and have watched their father die, their mother suffer years upon years with mostly no answers or relief. I don't understand, how are my children supposed too? The. To think somehow they are just supposed to take this burden and manage to get through it like nothing has ever happened.

It has torn my family apart and although I work tirelessly to heal that damage, it's going to be a constant battle. A long time commitment and every single day making effort to try and be different. My children are not the only ones to suffer. My siblings, parents and of course romantic relationship and friendships do as well.

My siblings and parents seek to understand with no ability what on earth I'm dealing with and how to help when all they have are words. Words can only go so far and when you know you can't truly take away someone's burden, how else can you help? So they feel they are failing to be supportive even though they are not.

Romantically, life's that much more demanding. I am in need of a great deal of emotional support and at times more physically. The role of housekeeper at times needs to be filled by someone other than me, forget cooking a meal for my partner...that's just not gonna happen if I'm to provide any type of effort in a relationship otherwise.

Then my friends, they feel abandoned and as if I am constantly flaking on them. I become the friend that's easy to stop talking to because I don't feel like going, or talking or doing. Yes I actively participate in my life, but everyday I do so in some form of suffering. Never is it fully and totally present in the moment.

So you think of all the ways that you suffer and never really realize just how much those around you do. They are losing a loved one. Watching you deteriorate before their eyes. Seeing you suffering in silence and depression knowing their words will only fall short. They hurt, they ache, they desire more with you and no idea how to get it within bounds that will be acceptable for you.

This is a whole new side of invisible illness that not many ever speak of. So today I write for those who are suffering along with me even if you have no idea how to help me get through. This disease isn't all about me, it literally is about every person in my life.


Friday, October 13, 2017

A message to those who are closest to me!

As I have started this new journey it just happens to coincide with more events going on in my life. These things range from medical to family and job. I am fairly certain I have reached out to many of you whom I'd call closest to me, so you are aware of what's going on more so than what I have voiced on social media. I'm still unsure to what extent some of you think this has affected me.

I'm strong and I fight and over come a lot. I currently feel weak and I'm in search of comfort and guidance and compassion and understanding and support from those who I know I can count on. I'm hoping that those of you who believe you are close enough to be in one of those roles, that you will reach out with your love and support. It's not easy to ask others for help or admit you need help. So I am just telling all of you who care, sometimes a person needs help.

Sometimes we may not know how to ask for it. Other times we may not really understand what form that help is best provided. I know over this past year I have learned a lot about owning my feelings. I have learned a lot about not fearing when I am falling apart and just reach out to lean on my loved ones.

I currently feel like I am alone, I know I am not. However, I feel that way regardless. I don't know if anyone really understands how I feel and how stressed out I am. From day to day I am wondering how much longer my body will keep going. If the next time I bend over will be the last time I do so without being able to stand back up straight. I'm worried about financial situations and maintaining my job. The holidays coming up and keeping my home in order and not allowing my family to fall apart while all the stress surrounds us.

I probably worry more than I need to, but I have a kid going through something tremendously difficult, my health issues, a fiancé with health issues and in need of surgery. I can't help but worry. I am trying to take care of everyone including my children's mawmaw who has nobody else and another child that needs mom to be there too.

This is a lot to talk about, but AS is enough in itself to cause depression which I do have, just not as severe as it once was. It also causes anxiety, and all this has that triggered even worse. Then to top it off I am battling an upper respiratory infection that is knocking me for a loop. I'm depleted and run down and trying to go and go and I just don't have much to left.

My body needs sleep, I need comfort. I want momma to hold me and tell me it's all gonna be okay. I want daddy to hug me and show me I'm safe and secure. I need an out pouring of love to lift me up because I am just falling to my depression and anxiety. I need my support system by my side. It's crazy but this is my life, I get weak and sometimes I need you. All of you. Each one of you fill a role and help me stay balanced and in track.

It's not fun living a life of suffering everyday. Especially when those days get the best of you. I'm scared and I feel alone. So I'm just sharing a more deep and personal side of how this all affects me daily. It's a scary world and it's a painful world. One full of criticism and lack of compassion. So I'm hoping this does not fall on deaf ears and that everyone just stay a little more in time to what your loved ones might need.


Wednesday, October 11, 2017

The unknown life of constant weird symptoms

Today I spent my day at the ER for reason other than my own, while sitting there my hand began to bruise or so it looked. I only noticed because it was throbbing and going numb like it usually does and I looked down and saw the bruise just coming up.

So I was now being checked in to be seen myself. Blood work and X-rays were ordered and it was discovered that my back was covered in what they called modeling or blood pooling. Very blotched pattern of a bruising on my back. This has not always been there.

They said it looked like blood issues and started naming off auto immune issues that can connect to such symptoms. The test results for my X-ray came back with evidence of swelling in the tissue and blood leakage as well as a bone type deformity. As anyone aware of AS knows, it causes extra bone growth better known as fusion in areas that have been highly damaged. So is that what this is, or is it something else and if so...what and why?

My labs, came back with abnormal readings several things high and some low. All of them being things that point to again the list of auto immune issues and blood issues the doctor rambled off. So here I sit wondering why he sent me home telling me my test were normal and just to follow up?  I also wonder what next ', what else is my body going to do to me? Why is this my life? I am suffering more and more each day.

My back pain is so excruciating that it's beyond bearable. All the symptoms combined are becoming unbearable. I don't know how I am supposed to physically continue to function yet, here I sit pushing on because I wasn't given a choice. My spoons are depleted for weeks to come and unfortunately crap just got even more in depth with my family and job.

I am facing intense stress emotionally over family situations and potentially a higher demand for added work on the job. It's like nothing can happen one thing at a time it's all or nothing. My only outlet is working on this. Becoming more knowledgeable and preaching more and more on awareness and research. So please people, I beg of you share my words. Get this information out and let it be known and read by as many as social media will allow.

Invisible Illnesses tack a drastic toll on the individuals suffering and the families of those suffering. We must get these diseases cured! Let's not just fight Ankylosing Spondylitis but all Illnesses that fall in this category from depression to mental to physical.


Saturday, October 7, 2017

The past year I have been on a journey of sorts. I have been researching and learning all that I can about Ankylosing Spondylitis. Why, because I was diagnosed with this and it is not only part of my life, but because of how I have struggled over the years it has become a passion of mine to find and help others with similar diseases.

This journey has led me to find a wonderful group of ladies that I hike with and they participated in my first ever AS Awareness hike this year on World AS Day. This will be a yearly event that in time I hope can become a fundraiser. I also hope to eventually hold 5k and other challenges to benefit AS. I will use all my experience to raise awareness and research for the Spondylitis Association of America. Which I became a member of this year as well. I have also officially signed the papers for starting My local area's first support group sponsored by the organization. This will be the first one for the state of Tennessee sponsored by SAA.

This is an exciting adventure for me and I hope that you all will share in my journey, help grow my success and raise awareness and research for Invisible Illnesses like mine. Twenty years of suffering with no diagnosis or treatment is far to long. I don't want anyone else to ever miss out on the years of life that I have. I missed out on so much because my body hurt to bad, because of clueless doctors and undiagnosed symptoms. I hated being touched, I was depressed, my social and family life suffered.

Now, I'm struggling to gain control of my symptoms even with treatment, but at least I am on a road to improving. Some days are hard, other days are harder. It's never easy, but relief lies in at least knowing that I am finally getting help. I am beyond excited to build on this future, I hope one day to be bringing about big change for others. I hope to become a big voice in the AS community. With the support of all my loving family and friends, my voice will grow.

I hope to one day see each and every one of my friends on social media sharing my journey, donating to my cause and promoting awareness for my disease! Together we can Kick Some AS!!!!