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Sunday, December 10, 2017

Ankylosing Spondilities and Spondylitis family

Introduction

Hello, my name is Summer and I was diagnosed with Ankylosing Spondylitis in early 2016. I suffered through 19 years of undiagnosed symptoms prior to finally receiving adequate care from a knowledgeable Doctor. Today is going to be a bit different, though I will not be able to completely depersonalize this blog, but  this is going to be more about the factual scientific or medical stand point. There is a bit of confusion as to what is what and how it relates to individual care. I want to break the stigma that medical conditions must follow some text book guideline of how they behave. That being said, let's get more serious!

What Is Ankylosing Spondylitis

According to the Spondylitis Association of America Ankylosing Spondylitis is a form of Arthritis that primarily affects the spine, although other joints can be involved. It causes inflammation of the spinal joints ( vertebrae ) that can lead to severe chronic pain.


Ankylosing Spondylitis- Ankylosis ( meaning abnormal stiffening and immobility of a joint due to fusion).

Spondylo (meaning spine)

Itis (meaning inflammation)

It is also said that in more severe cases this inflammation can lead to ankylosis (new bone formation) causing a fused and fixed immobile position.

The Laser Spine Institute, states that Ankylosing Spondylitis can be referred to as Autoimmune or Autoinflammatory in nature. There is much debate as to which category it should be classified under. Autoimmune being when the immune system begins to attack your bodies own cells as if they were an unhealthy invader. AS does share some similarities with this  type of disease.

Autoimmune or Autoinflammitory

In an Autoimmune disease the body attacks an antigen that is produced by your own body. In short this means that an  autoantibody must be present to gain classification as an autoimmune disease. The tricky part is that in diseases like Ankylosing Spondylitis the body's immune system is involved but autoantibody is not typical found in those cases. 

Autoinflammatory means that the body is reacting as if their is a danger, but no autoantibodies are present. The immune system has two branches, the adaptive and the innate. The adaptive side makes antibodies that respond to a specific targeted factor. the innate side can respond more rapidly but with no specific factor in mind. This innate side is where proteins like TNF are found, and this is what generally is seen in autoinflammitory diseases.

So what does this mean, well for Ankylosing Spondylitis it is a little of both. Studies have shown infection spreading in animal testing by transferring the specific white blood cells from an unhealthy to a healthy subject. The result was the healthy subject adapted the disease, which makes it autoimmune. HLA-B27 also argues for the autoimmune side of things. However, bacteria have been suspected to cause some cases making it autoinflammitory along with it's lack of antibodies and it's connection to TNF protein. This tends to leave many in the dark about what category exactly this disease falls into. The bottom line is we need more research, study and time to make any better clarification than this.

If you have been given medical opinion that it is autoimmune, then your Doctor clearly feels confident you lean more towards that criteria than the other. I would also like to point out, that nothing says they can’t be both at the same time. The body is such a magnificent and incredible thing, and it can do anything it darn well pleases even if it falls outside of the textbook explanations of a disease criteria,

Spondyloarthritis

As if I hadn't given you enough to scratch your head over, I am about to make this a whole lot more complicated. AS is a member of the Spondylitis family, also referred to as Spondyloarthritis, Spondyloarthropathy and Spondylitis and SpA. AS is also classified in the family of Rheumatic Diseases, meaning successful treatment will only occur by seeing a Rheumatologist that specializes in these types of diseases and is believed to be seronegative in nature. Just how many classifications does this thing fit into? Well I am about to break it down for you.

Six diseases are currently included in the Spondyloarthritis family. Systemic inflammation is a key feature that separates AS from other diseases in the family. The six diseases are divided by the predominate disease factors. There are some main similarities with any SpA. These symptoms include, inflammation in the pelvis and back. Pain and swelling in other joints. Uveitis/Iritis of the eyes. Psoriasis rash of the skin. Inflammation of the intestines. Dactylitis of the digits and Enthesitis of the tendons and ligaments.

There are two main groups. Traditional SpA classification with the six diseases included in this category. The Newer SpA classification that only separates by two broad categories. I will talk more as we continue, for now let's look at the six diseases in the traditional family class. Ankylosing Spondylitis, Psoriatic Arthritis, Enteropathic Arthritis, Reactive Arthritis, Undifferentiated Arthritis and Juvenile SpA.

Ankylosing Spondylitis

This is an arthritis of the spine with typical onset from 17-45, it is difficult to diagnose. This is the most overlooked cause of back pain in young adults, and it is not rare. It is more prevalent than MS, Cystic Fibrosis and Lou Gehrig's disease combined. Damage to other joints such as hips, shoulders, and digits as well as impact on eyes, heart and lungs. In severe cases the spine can fuse solid. There is no cure for AS but early diagnosis can reduce stiffness and lower the chances for disability or deformity. A hallmark of this disease is inflammation in the sacroiliac joints.

Early warning signs are gradual onset back pain, worse in mornings or at night and with rest. symptoms longer than 3 months and positive response with NSAIDS. Reducing systemic inflammation and activity are key to minimizing the risk of fusion in joints or enthuses between tendons, ligaments and bone.  

The healing and repair process of inflammation over time is what eventually leads to fusion of the spine. This occurs because the damage leaves scarring of tissue that results in new bone formation. Not all cases of AS will lead to fusion.

Psoriatic Arthritis

This type of Arthritis can lead to fusion of the spine like in AS and they are genetically and clinaclly related. This being they both link to a connection with the gene HLA-B27. The hallmark of this disease being the Psoriatic skin rash. Symptoms include back pain, conjunctivitis, reduced range of motion, swollen joints, nail pitting and fatigue. Psoriatic Arthritis is also Autoimmune in nature. This being, the body attacks the skin causing Psoriasis and can eventually cause the Arthritis. This generally onsets in the 40's or 50's. The classic nature of this to cause inflammation in other area's of the body is why it is in the SpA family.

Enteropathic Arthritis
Enteropathic Arthritis is connected to Intestinal Bowl diseases. Individuals that have Chron's or Ulcerative Colitis are likely to have this type of Arthritis, about 1 in 5. The most common areas affected are the limb joints. Classic symptoms include abdominal pain. It is believed that long term damage of the bowls leads to bacteria leaking into the blood stream causing the arthritis. This however has not been confirmed by research. HLA-B27 is also connected to this type of Arthritis as well. The prognosis is much lighter than some, flares typically lasting six weeks and then subsiding for length in time.

Reactive Arthritis

ReA does not normally affect the spine. It can cause inflammation in bladder, genitals and mucus membranes. It is thought to occur after  a reaction to an infection. This arthritis can go away on it's own or can be severe enough to need medical treatment. Most cases appear as short episodes.

Undifferentiated Spondyloarthritis USpA

Symptoms of this type of arthritis are consistent with SpA but do not fit in any other categories. These are not conclusive enough to give a definitive diagnosis even though symptoms are there. Over time some people with USpA will develop enough criteria to get a diagnosis of AS or one of the other diseases.

Juvenile SpA

As it states, this form develops during childhood and usually has a prognosis for more severe outcome, Children tend to have peripheral arthritis as a predominate symptom as well.

Newer Classifications

This leads us to the newer classification, Axial Spondyloarthritis (AxSpA) and Peripheral Spondyloarthritis (pSpA). AxSpA is a much broader category of people with and without characteristic inflammatory changes of the SI joints on X-Ray.
This newer criteria is broken down into two main groups. Radiographic and non radiographic.Almost all people with AS fit into the radiographic category. Radiographic is when AxSpA is seen on X-Ray and of course, non radiographic is not seen. ReA, Enteropathic, undifferentiated and  Psoriatic arthritis can fit in either category.

Peripheral Spondyloarthritis (pSpA) causes inflammation in the limbs rather than in the spine like in axial. Psoriatic is more typically found in this category while others can fall in either. it is also possible for a person to have both Axial and Peripheral arthritis. It is important to take note of the fact that Spondylitis and Axial/peripheral are umbrella terms. The traditional and newer classifications are often used together.

Spondylitis Association Of America

SAA is the premier resource for information, education, research and treatment. For 30 years SAA has been at the forefront of advocacy and research. They keep the most up to date news, information about treatment, medication and research on their website www.spondylitis.org Spondylitis plus is a great way to stay informed. Between the magazine, and pamphlets and EMS awareness DVD's they will do everything they can to be a voice for the Spondylitis community. SAA holds a credible application process for all volunteer support group leaders, and only work with the best rated, top of the line medical professionals.

The SAA works with a Scientific and Medical Advisory board and SPARTAN to provide research articles on Spondylitis. This organization created the first instructional video designed to make EMS workers aware of the potential risks of caring for an individual with AS. Many educational brochures have been created as well as the award winning Spondylitis Plus magazine.

Some Things Are Bigger

"Some things defy description and some things don't follow the rules of science. Some things are just larger than the sum of their parts." ( Spondylitis Plus Summer 2017 issue) When I read this line in the magazine last night as I was doing my research to write, it really stuck with me. I was a participant in a conversation yesterday that for the most part was someone trying to deny this very fact. It is probably one of the biggest medical mistakes anyone can make, assuming that anything is going to be textbook of the medical expectation defined in the school books and articles.

If life doesn't teach you more than one lesson, let it be that the body is an incredibly amazing and complex thing. Don't get caught up in the medical jargon or the wording of a paper, simply listen to what you know to be fact, and what your treatment team believes is best for you in that situation. I was lucky, once referral was made for me to see a specialist I have had the pleasure of working with  some wonderful Doctors who listen to me and how I feel.

Don't Get Hung up On The Small Stuff

This list of diseases and the different classifications and how they are worded, honestly should be the least  of our concerns. If we let ourselves get hung up on when we are allowed to call a disease a disease, we would never get any answers. They definitely don't know enough about the Spondylitis families, to give us all the answers.

My personal list of symptoms is rather long, and when you start throwing out so many different things, well, it becomes very difficult to determine exactly what is causing it. In the 19 years that I have suffered undiagnosed with symptoms, I had Doctors tell me I was crazy, that my symptoms couldn't all be related because it was to difficult to pin point what the cause was. I went to counseling, visited with a psychiatrist., physical therapy, GI Dr., Gyn, my GP, a Cardiologist and a Pulmonologist and Optometrist and a Neurologist. I was told I was a living episode of House at one point. Medications consisted of a long list of anti depressants, NSAIDS occasionally and some vitamins,  a heart rate medication, a bladder medication, meclizine and heart burn medication.


During this time none of the medications worked, so they were constantly switched around and test never providing any answer either. I was switched from medication to medication with no proper step down from the antidepressants, I only got sicker and sicker and I lost all hope and gave up. I stopped all medications and did not return to see any Doctors for 5 years. The only reason I even started going back to the Doctor was because of my eyes. I had started having bouts of Iritis. This painful symptom made me wish I could stab my eye out with a fork. I had no clue what to do so I went to the Eye Doctor for relief. Like I said above, some things defy description and don't follow science, and I am  a prime example.

Getting Diagnosed

Who would ever think that a visit to the eye Doctor would answer practically ever question I had. After the first flare, and it being extremely difficult to treat, I got it a second time my Doctor was curious at this point, and said he wanted to do lab work and asked me about  other health symptoms I had. He explained he was looking for a specific Gene, the HLA-B27 marker that is connected to Ankylosing Spondylitis. He ordered the test and requested I go ahead and get an appointment with my Doctor to set up Rheumatologist referral. So I did and I tested positive for the gene.

Prior to getting in with the Rheumatologist, I ended up with my third flare of Iritis and in both eyes this time. The right eye was so bad that we never got it under complete control, My eye is permanently damaged from it and my eye Doctors are stumped. They had to actually do research to determine the next course of action, and we had to call every pharmacy in 3 cities to find one that could even order the potency level of eye drop I needed. This drop so potent that I had to return to my eye Dr. for each use because to much could cause heart complications. I now have to regularly go in for a quick pressure check because my right eye no longer dilates, it is stuck in the glued position that occurs from the sticky particles that build in the eye during Iritis. They love to see me, and always want to look at my eye under the scope just for fun, they informed me how rare it is to have something like this occur.

Ankylosing Spondylitis

AS is the diagnosis that I was eventually given and I still see my GP regularly, we can't get enough control over symptoms for me to make it more than 6 weeks without seeing them, not to mention I am still developing new symptoms as well. This leads me to the next interesting fact, Did you know that most people who get a diagnosis in the autoimmune/autoinflammatory category usually end up with more than one diagnosis? It is also extremely hard to find a full medical team that all understand your symptoms and all work jointly to provide the best possible treatment.

This is the number 1 reason this has become such a passion of mine. I am determined to bring others faster relief, nobody should have to suffer for 20 years. Number  2 would be because there is so much confusion out there and we need to do everything we can to fix that. I became a member of SAA because they are the best when it comes to research, awareness, fundraising, and providing valid and reputable information to others. They work closely with the top groups like SPARTAN and use works published by highly esteemed medical professionals.

I am hoping by providing a more detailed and research based rather than just a personal account  of AS that I can begin to make a difference in the level of confusion involved here. Yes these diseases are referred to as Arthritis type, but trust me they are the farthest thing from being just Arthritis!  I am so blessed that I am able to turn my diagnosis into a gift. I am getting to build something that allows our community to feel validated after so many medical changes, confusion, and lack of common knowledge. I look forward everyday to going out and KICKING SOME AS.

Here's to Kicking Some AS

References

www.spondylitis.org
Spondylitis Plus Magazine
www.spineintitue.com
www.spartangroup.org

























Wednesday, November 29, 2017

Pain can only lead to strength

 Don’t let it defeat you

I won’t sugar coat anything, when I write it’s raw and it’s real knowledge from my life. That being said, some days just flat out SUCK! I most definitely get knocked on my butt my share of days. I however have a choice and so do you. You can choose to get defeated or you can get up and Kick Some AS! Yesterday was one of the hardest days I have had in a very long time. So I stopped what I was doing and I rested for a bit, put a pain patch on and then went to work living my life. My life is far from what some call normal, but I live it the best way I can because I refused to be beaten by this.

Make your  HLA-B27 Be positive

What does that even mean, make your HLA-B27 Be positive? Let me first clarify that to those who don’t know, HLA-B27 is the gene connected to AS (Ankylosing Spondylitis) and you absolutely do not have to have the gene to have AS, and you can have the gene and not have AS. I am HLA-B27 positive meaning I do have the gene and of course I have AS as well. When I was struggling with my day yesterday that phrase make my HLA-B27 be positive came across my mind. The term positive is supposed to be a good thing, I think we can all agree that being diagnosed with a chronic pain,  disabling, life long disease that can’t be cured is the farthest from a positive thing.  That’s when I realized that I have the power to make it a positive thing and I have done just that.

Kick Some AS

Kick Some AS is much more than a hashtag, or just a term I toss around lightly. In the past 2 years of being diagnosed I have seen many ups and downs. One day not long after diagnosis I was out hiking this massive beast of a trail up in New York. I kept saying to my self “man this trail is kicking my ass” but I didn’t give up, and I didn’t let the fear of unknown, or the fact that I was alone defeat me, I was going to accomplish this goal. Once I made it to the top, it was all down hill from there and that’s the easy part, so I felt better than I had ever felt. I was bruised, bleeding from a few minor scrapes, sweating horribly, hungry and tired, but I made it! That’s when I realized that if I can do that, I can beat this thing too. Kick Some AS became my motto and began my undying passion to bring others support and comfort when they might be struggling.

Anky What

When I first heard the phrase Ankylosing Spondylitis from my Doctors, I said just that Anky what? Then when I began telling family or friends they said the exact same thing. My children when I came home the day I was diagnosed and told them what I had, they immediately said “Mom has a prehistoric disease, she has ankylasaraus spindlefiber.” From that day forward that’s what they have called it, my dinosaurs disease. I was clueless and began a relentless research of AS. I discover a non profit organization and began the work of becoming a voice for the AS community. I’m my State there was not a support group, so I completed an application to become the leader of  the Spondylitis Association of America’s first leader of a support group for the state of TN.  Having my dinosaur disease has turned into something hugely positive. I have been able to spread so much awareness, learn from others and from myself. I am a better, stronger person because of this, and that is why I can say my HLA-B27 is Positive. That is why now when I encounter people, that don’t look at me confused and say “you have Anky what?”

Self help is the first step

I only needed a year to figure this one out, well I suppose you could say 19, because I refused to do anything to accommodate the way I felt prior to diagnosis. Mostly because people kept saying I was just crazy or depressed. I’m no longer ashamed of when I need a little help. I am super independent, so allowing anyone else to help me in anyway has been very hard. I understand more than ever that I must take care of myself first. I make myself rest when needed, I ask for help and I adjust my lifestyle to fit my pain level day by day. This allows me to participate actively in my kids, families and friends lives. I can work, maintain a relationship and have the energy to keep on going to build Kick Some AS into something wonderful. I’m not afraid to tell my Doctors what I need or how I feel.  If I didn’t do this, everything in my world would come crashing down. I am the only parent my children have, so I don’t have a choice, and I refuse to let my kids think this is something that will prevent them from achieving their dreams and goals if they are ever diagnosed with it. I’m a spoon yielding warrior in battle and my blue ribbon hangs proudly as a badge of honor because I get to help others help their self.


Now get out there and Kick Some AS

Friday, November 17, 2017

Someone asked me how I do it, I said I wasn’t given a choice!

Inspiration comes from the strangest places


It took me longer than I planned to sit down and write this time. About two days ago inspiration struck at the strangest moment. I was getting dressed for work and it just really sank in how difficult that task was. I know I have talked before about those simple task we do everyday, however I don’t think it will ever be something I will get used to. It’s just not supposed to be that hard to complete the daily task of life. It is much more than just cutting toe nails, it’s putting shoes on, shaving my under arms, writing, typing, putting on a seatbelt. My body simply does not want to cooperate.

36 Going on 96

I know, you are thinking I must be exaggerating, surely it’s not that bad?  Yes and No! Obviously I don’t think I can be compared to someone in there mid 90’s, but some days it sure feels like a few of those lucky enough to reach that age are doing way better than me. I actually asked for a shower chair and a claw grabber for Christmas, and not because I’m lazy and short. It just really came to my attention that I may actually need to adapt a few things to better work with my bodies limitations. Let’s face it, I’ll never get any better so all I can do is make things as easy as possible for myself. If this means sitting down when I get dressed or shower, I’m all for it. I will take the easy road any way I can in order to keep blogging as long as possible. Then it will be time to vlog or use voice to text.

To Vlog or Not to Vlog

That is the question my friends, should I go ahead and start doing some vlogs now? Should I be doing that in conjunction with my writing? That’s probably not a bad idea, and I need to work on my social skills a bit anyway, if I am going to lead a support group. Bet you would never guess I have social anxiety and truly hate facing new people and new things, especially when they involve talking to new people. All of these things have not just impacted me in a way that’s made my life more challenging, but it’s also been the greatest blessing. It is forcing me to become comfortable with my less than perfect side, pushing out into the social world and causing me to spread my wings a bit. I have been blessed with the opportunity to turn a bad circumstance into a wonderful learning and growing experience. So next time you get down on yourself, think of the positive that you could make. Lemons=Lemonade right? Until next time....

KickSomeAS

Thursday, November 2, 2017

My AS was meant for more

I have wrote many times about what symptoms I have and what this process has really been like. Most of the time, I am still putting on that brave face. I act as if it's all okay and I  don't need anything. I try to be real and give you the raw truth, but it's hard to be that vulnerable. The fact is that it is the biggest fight I have ever fought. Each day is a battle and some days I lose! Many times I lay in my bed because I don't have the energy to do anything else. I am not lazy, I am not giving up. I truly don't have the strength sometimes to get out of bed. I toss and turn hoping I can sleep, but sleep never comes and the pain never stops.

Every minute of every single day for 19 years of my life I have felt pain, years ago it was a minor ache that I could pretty much ignore at all times. It began to increase and I wanted someone to comfort me, rubbing my sore body soothed me just a little, heat became a really good friend of mine, as it seemed to dull the pain enough for me to sleep. Then one day it just became impossible to ignore anymore. I needed to seek medical guidance on what was causing this pain. Little did I know that it would be years of stressful Doctors appointments filled with no answers, a course of constant changing medications that did not work but made me sicker, and no motivation to continue fighting. I gave up, I had lost hope that anyone would ever find the answers.

As the years went by I found myself dealing with increasing levels of pain and more symptoms showing up. I wondered over and over why this was my life. I wasn't the person I wanted to be and I wasn't sure I ever could be. I felt lazy and unproductive because I never wanted to do anything. I wanted to just be able to relax as much as possible. This meant no house cleaning, or hanging out having a good time with friends and family. I shut everyone out and I avoided everyone that I could. I felt like nobody would understand. Some of the people in my life already believed I was making up the way I felt.

I created kicksomeAS because after my diagnosis I had an answer, I knew why I felt so bad. I became determined the more I learned to not let this disease take over anymore of my life. Sometimes I still have really bad days. I can spend hours just trying to make myself build up the strength to get out of bed on my days off. Something I have figured out along the way is that I can't just force myself into everything. It is just as important for me to let my body rest and recover as it is for me to fight for a life I can live everyday. I will be the first to tell you that I still ask that question, why me? Why is this my life? The more of my heart I put into kicksomeAS the more I believe that I can make a difference.

Did you know that there's not a single support group in the entire state sponsored by an AS non profit organization? How about this, did you know that The Spondylitis Association of America is at the forefront of research, education and awareness? They do not receive any government funding so they rely on the donations of others. They use the money they receive to do fundraising, research, and spread awareness, not to line the pockets of some CEO. I have had the privilege of getting involved with this organization to begin the process of making kicksomeAS something much bigger.

I need support from all of you, so if you read this, if you follow what I post, then please take the time to find my social media pages and follow me there as well. If you live in the Tennessee, southwestern Virginia, Southern Kentucky, Southwestern North Carolina or Northern Georgia area and cant find anyone near you that offers a good support group than please feel free to contact me. I am available to talk, or offer any assistance I can. reach out to me by email at kicksomeas@gmail.com find me on istagram under kicksomeas facebook group Kick Some As as well as following me here at k.kicksomeas.com and of course be watching for me to post about the KickSomeAS support group that I will be starting in January of 2018.

I look forward to building kicksomeAs into something big. I am working on all the things I need to begin fundraising and of course will always be doing my part to spread awareness. I have learned that I am not alone, there is someone out there who understands exactly what you are going through. I never thought for a minute that I could use my diagnosis for so much good. It is very empowering to know that I can take control and make this life anything I want it to be. When those days come around that I am struggling to get out of bed, or new symptoms pop up and I sit waiting for more answers, I remind myself that I must kick some AS. I have gained so much strength because of that. I don't let it rule my life, and you don't have to either.

Join in on the fight to #kicksomeas and become a part of something great. I look forward to growing and learning with all of you. Now get out there and .....

KickSomeAS

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!

#kicksomeAS

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 Kicksomeas.com 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.

#kicksomeAS

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.

#KickSomeAS

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.


#KickSomeAS

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!!!!