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Tuesday, November 26, 2019

I only felt it right to choose now for my update. Its been 1 year since the day my Job said that I could no longer work and should file for my STD (Short Term Disability). It was only a month after that they said lets go ahead and do long term, and you no longer have a position here and oh you should file for SSDI (Social Security Disability Income) because it’s a requirement of filing for LTD (Long term Disability) with your work benefits. I have not held a job in 1 year as of now. It has been a long and extremely challenging year. One that I thought would end differently than it looks to be. 

When I stopped working my breathing issues had become enough of a problem that I couldn’t climb stairs without collapsing to the ground. My heart rate regularly staying in tachycardia at an average of 130 BPM resting and tiger on activity. I had abnormal x-rays, CT scans, overnight oxygen monitoring, holter monitoring, pulmonary function test and cardio pulmonary stress tests. Yet my Doctors couldn’t figure out what was going on. Nobody had an answer for me. 

As I continued to get sicker all my symptoms seem to be flaring due to the stress. My body was under from these new issues and my heart and lungs constantly working so hard. I was constantly having to increase my medication dosages and still getting no symptom control, to changing to new medications and still seeing no symptom control. This was a constant process all year long for me almost. 

Then in April, I landed in the hospital with abnormal EKGs and a heart rate in the 40’s low 40’s too. My body was used to a heart beating on overage 130 times a minute, so my body felt like my heart was basically stopping. 40 bpm was not enough to keep my body functional by any means. My labs came back out of whack, nobody had answer still, they just stopped my cardiac medications and sent me home after a few days and my rhythm went back to a normal rhythm. It took several days for that to happen though. Then I had to have a heart Cath to look at everything and was told they still had no answers. They couldn’t replicate the rhythms I went into to see a problem nor could they make my heart get to fast. 

By this time my PFTs (Pulmonary Function Tests) had leveled out and my Diffusion capacity was no longer declining. My Scans were all clear and nobody knew wha else to do for me. So I began doing more and more research. I wanted to know more about all the medications I was on. I was on 15 by this point. Turns out many of my medications could be the culprit, but so could AS. So what do we do. It was also at this point when I knew things had to change. I was now spending the majority of my time in bed. I didn’t go anywhere, I barely ate, I couldn’t sleep. I threw up multiple times a week, I was always bloated, Extremely fatigued, I couldn’t think straight, I didn’t have the energy, strength or motivation to shower or get dressed. 

During a week of repeat visits with my GP trying to regulate my medications to find some kind of control over my symptoms I received a phone call unexpectedly. My Doctor was saying stop these medications now. I don’t know how we haven’t looked at this sooner. He says, I think we have you taking some medications that are actually causing your symptoms to get worse. Now, you are my Doctor, how is it that when complain of the symptom of Restless Leg that you would prescribe me an insomnia medication that actually causes RLS to become more severe? Here is the response I got. “Well, when you come in and have such a lengthy list of symptoms even when we know you have a diagnosis such as AS that causes many of them, our time is short, and we can’t always focus on every symptom at every visit. So if you come in today because of insomnia but we don’t discuss your RLS then it’s often easily over looked because we just prescribe the first recommended medication that covered by your insurance. We don’t go researching to see if any potential symptom my interact with your body first. We just don’t have that kind of time in our limited visit.”

Boy did this make so much sense to me. After all, who has been prescribed something only to get to the pharmacy to find out that you can’t take this medication with one you are already on? The Doctors often don’t look at these things, they expect the pharmacist to catch it because that is their job. This has happened to me. So he says he looked over my medications and he decided to have me stop three of them and was placing me on new medications. Almost immediately I noticed a big difference in some of my symptoms. Then it really struck a nerve, They are my Doctors, they are here to help me achieve my best health not make me sicker. Yet here we are, I’m getting sicker and sicker at the hands of my drug peddling Doctors because all they think about is slapping that pharmaceutical band-aid on our health and not actually fixing our health. 

I set another appointment this time to go in and discuss stopping all of my medications. I had a fairly long conversation for a Doctor visit and it was a good one. My Doctor listened, he agreed and he supported my choice to stop medications. He agreed that maybe the pharmaceuticals were really more the problem than my actual health was. I made this choice and stopped all medications other than pantoprazole for GERD as of 10-01-2019 I have not had anything from the prescription category other than that one pill. In just this short time I went from not getting out of bed, feeling like I couldn’t do anything because I had no energy, or motivation, my heart and lungs wiped me out, throwing up constantly wiped me out, never sleeping wiped me out. I went from all that to actually feeling like I can have a life again. 

I Started using Cannabis when I stopped medications also. 2 months ago I had Stage 1 liver Fibrosis due to medication use, and a few weeks ago I had a completely clean liver scan. My restless leg was a daily thing, and so severe that throughout the day I was having massive tremors and spasms of my legs and it even started in my arms. Within days of stopping medication my RLS has gone to nearly none. I have maybe a few times a week a short period of annoying discomfort that heat usually soothe away. My vomiting has fully stopped and I was throwing up 4-5 days a week multiple times a day. My insomnia has gone from every single night to maybe 1-2 nights a week and even those nights are to completely sleepless like before, they armor just I wake up to early and can’t go back to sleep. My Gerd is better controlled but not gone, and not controlled enough to due without medication. My pain has gone from a steady 5-6 everyday with moments of higher pain to having minimal like 2-3 pain with occasional higher pain days and even some days with lower pain. I am eating better than I was and I’m getting up every day and doing something, even if its small stuff. I feel like getting up and doing stuff, I have motivation again. I have energy most every day. 

I have not yet altered my diet or added exercise into my routine, but I know with my new improvements this should be more beneficial than it was in the past. For example, it doesn’t matter how good you eat or exercise if your medications cause weight gain, or inability to lose weight. Which was also a problem, because some of my medications did and I failed all diet and exercise programs I tried. As for my attempt to be medication free, I want to stop the Gerd medication, but unfortunately the damage long term NSAID use has caused over the years has really jacked my stomach up and its going to take a lot of work to come off of. Prior to ever doing so  I need to have the acid build up under control in order to protect my esophagus from more damage and potential development of cancer. It is a fair trade, one medication to ensure that I hopefully prevent further damage, one medication that doesn’t impact my quality of life in a negative way. However, hopefully after December I will have updates on the potential of coming of this medication as well. 

I am improving, this is a good thing. My Pulmonologist agrees that maybe this is the right track for now also. The current plan is to reevaluate my PFT to see of anything has changed after coming off medications. If it improves then Medication probably caused my lung issues, if it has declined then AS is probably the culprit and I’ll need to reconsider using a biologic to prevent further lung damage. At this point it is still a waiting game and I dont really have answers, but I feel 90% better than I did a month ago, 6 months ago and a year ago. I’m not where I was 2 years ago, but I have hope. 

This isn’t a plead to have others stop medications, but more an advisement that you just never know when you actually feel worse because of your medications and not because of your AS. Please be aware, always question your Doctors medication choices. If you think a symptom has gotten worse after a new medication check to see if it might be a cause and don’t let your Doctor try and tell you its not that. Be an advocate for your healthcare and make your Doctor work for your not Big Pharma. I will also have a follow up blog about Functional Medicine Doctors and using  Functional Medicine to your advantage in your healthcare team. 

Wednesday, October 23, 2019

A System That Fails Only Causes The Weak To Suffer

Well my day just went to shit real quick. First of all I am pissed!! So let me warn you now that this may come off mean and potentially aggressive but I’m livid so I apologize if it does.

I had a phone call to ensure I was still eligible for food stamps today, this after they failed to do their job the first time around. That is beside the point. 

The biggest reason I am pissed off is because of a small statement the b*tch on the phone made. However we will get to that in a moment. 

My Only income is the death benefit check I receive for Keith and Alie as I’m still waiting on social security and my lawyer says that could take years. My oldest son is working but has not moved out yet. I don’t see a financial benefit from him being here. He is an adult and saving to get his own place. 

He won’t be living here much longer, but now suddenly it means I’m no longer eligible for food stamps because they refuse to separate his income on the application due to him being under 22. 

Basically saying that there is no exception when you are under that age, but if he was 23 and we claimed we ate/purchased separately they could separate it. So an age limit of 22 while my adult son is old enough to move out in his own (19) isn’t allowed to by federal law be legally separated from the household income no matter what the circumstances are. We don’t eat together and we don’t purchase together, but it doesn’t matter that he is a young adult trying to start his life and it takes income to do that.

I don’t have the additional income to replace those food stamps without taking from my sons income or going back to work and giving up on disability knowing that could be damaging to my health. 

My son won’t be able to move out any time soon if I have to rely on his income for feeding this family. It will cut hundreds of dollars out of his monthly earnings which isn’t much as he doesn’t work a high paying job. So I’d be taking more than 1 whole check each month from him. Then I would need to still figure out how to get him into a place and reapply.

They are telling me that if he moves out I won’t be approved until I can show proof of his new residence. So I need  documentation that he has indeed moved out to get back on food stamps which already wasn’t enough but we made due, and that’s already with me just feeding three of us because James does handle food for himself. So that amount would drop because my number in the household would drop and I’d still be struggling to feed me and the other two kids. 

Oh but I have a 16 yr old who would like to earn money and not be required to use it to support his family either. So basically if I actually allow my children to work to build work experience and learn how to become functioning adults for the world my family will be penalized for it and we won’t be able to afford to pay for food. 

That’s absurd because a child should not be held accountable for supporting their parent or siblings. I’m livid that they don’t have exclusions for young adults trying to start their lives out. I’m livid they don’t have exclusions that give you access when you are applying for disability, it should just be an automatic as long as the case is active you are eligible situation because my sons income isn’t a guaranteed source of income for me. 

If he moves out tomorrow, I would have to reapply and to get approved I need to prove he moved so I need the verification and they said he had to have a piece of mail. My guess is a lease and mail when the time comes which could take time because it could be a month before the first acceptable piece of mail arrives at a new address. So I’d be without food for at least a month regardless. 

I feel that just abruptly cutting people from programs is extremely harmful. They should say okay you are no longer eligible unless these things change by ex date. And that way you have a chance to adjust and make arrangements without ever losing the benefit and being in a financial emergency. 

Now all this being said I’m angry our system isn’t designed better. A system mind you I paid taxes into for many many years in order to have access to such services if I ever needed them. Now I can’t even have the security of knowing I have that. 

The news obviously had me crying and I’m complaining to the b*tch on the phone about how unfair it is that if he was just 23 they would separate the income and how unfair it is that my family will suffer because of a stupid requirement and how unfair it is that My family will suffer, no matter what route I take.
1. I go back to my health declined and my family suffers.
2. My son pays the difference to support us and help us through and then can’t move out which starts a loop of dependency because he needs the home and I need the income. 
3. I make him move out and wait out the loss and prove he move and take my cut and get food stamps back with no way of replacing the cut funds because my son can’t financially afford to help now that he is in his own. 

This is when the stupid things got said. She had already apologized for the loss of their father knowing I receive a death benefit check and having discussed that just moments before I was told I was denied. Then she says to me I should count myself lucky because most people with no job don’t have the kind of income I do. 


I should count myself lucky that my kids dad died? That I receive a death benefit check? You fucking call that luck? 

Well, yeah...if it wasn’t for that check my kids and I would be homeless but lucky??? I don’t consider myself lucky to have their father be dead! Nor do I consider myself lucky that I’m sick and was unfortunately not well enough to continue working. Thus needing food stamps to begin with. That is not what I call luck nor do I appreciate anyone trying to belittle my situation just because he made good money that resulted in a good social security payout to his children. 

That money is not a life long resource for us. It will end completely in 4 years. By that time if I don’t have SSDI I won’t be able to pay for a place to live without going back to work. Hopefully it does not take that long but my lawyer didn’t make it sound like it would be any time soon. 

Our system is broken and it fails the people who need it the most. Do you know that the state says I should budget $56 a week to groceries for a family of 4 breakfast, lunch and dinner for a week. That doesn’t buy enough food for shit! Especially not when the foods that are better for me to eat cost more money. The shit I can buy cheap is all high inflammatory and processed with additives and chemicals and not good for our bodies. 

Our system should not be allowed to set regulations on you that say your 22 yr old child’s income can’t be separate from yours hell they shouldn’t even be allowed to do that at 16 because how on earth is it fair to tell a 16 yr old that wants to work to buy things and hang out with friends that it is their duty to spend that money supporting their family? We should not be asking minor children to step up and be the adults. We should not be telling adult children they are not allowed to maintain a separate income from an adult parent while they attempt to move out on their own as a brand new young adult member of society. 

They wonder why the lower class never succeed, it’s because our programs are designed to keep them struggling for life. Not to actually help them. Cutting food stamps with no grace period is just as bad as cutting a patient off of certain medications without titrations down first. It can cause serious problems like depression, financial burden and more. 

I just got to a place where I felt I could afford to buy my kids Christmas presents this year, and now that money has to buy food. That’s not fair. I didn’t ask to be living this way when I had kids. I was financially stable when I had all three of my kids. I didn’t ask for their father to become a drug addict and die, I didn’t ask to become a single mom because I thought I’d be married to him the rest of our lives, but drugs got in the way of that and I had children to think of. I didn’t ask to get sick. I didn’t ask for it to take me out of work. I didn’t ask to be living in poverty but life had different things in store no matter how much I tried to have it be different. 

I’m upset because I have been failed by my government. They forgot people like me exist and just set rules that are out dated for the way society functions today and honestly based more on bias that everyone on food stamps is abusing the system. I see so much hate towards people on food stamps and how they are all abusing the system. Well, this is why they abuse the system. People in real need with no other way to get help have to find ways to cheat the system in order to feed their kids. My personal opinion is your income guidelines need fixed. You still can’t afford to buy food at the eligibility requirements you set. 

You forget people need toilet paper and shampoo and razors to shave and clothes to wear and gas to go buy groceries and insurance for the car to go get the gas and laundry detergent and dish soap, and what if my car breaks down, and monthly medical expenses, then the kid needs clothes and forget me having dental or vision care because my insurance doesn’t cover that and I can’t afford to buy any so I do without which isn’t good because my health is important. 

It is time for change and I seriously hope everyone hears this and votes for change and assistance where it is needed. Stop being judgmental of those on assistance and start having some understanding that there is far more to the situation then you may realize. 

Tuesday, October 22, 2019

A Year in the Life of Spondylitis

                                                               A Year In the Life of Spondylitis

As each day passes my Facebook memories remind me that it’s been almost a year since I stopped working. As I typed this I found myself struggling with the word to use in that sentence. “Since I had” “Since I made the choice” “since I was put out” and none of them really felt right. In October of last year my symptoms took a turn for the worse fast and by early November I was no longer working and by December I had applied for Disability. I didn’t want to stop working so it really wasn’t a choice. I didn’t really think I had to stop working because I thought it would go away. I could have pushed through it and stayed longer. Unfortunately my employer wasn’t going to allow that. They put me out of work and because I wasn’t improving and only getting worse they requested I go ahead and file for my work disability. It was then that I realized I probably won’t be going back to work. 

I had been having breathing issues and heart issues since 2017 so it really wasn’t a huge surprise to me that things got worse. I just expected it would improve, I though it is just a flare I will recover and go back to the way I was. The way I was had changed a lot since this all started in 2017. A former hiker, I was no longer able to do that. I was handing off responsibilities to my children at home. They did more cleaning and cooking and helped me more than they should have needed to. I bought a cane, was utilizing a chair to assist with showers and getting help with anything I needed. All of this because I needed to maintain the energy to hold down a job. To provide for my family. 

My health did not improve and I went from a chronic cough that wouldn’t go away and getting short of breath with many activities to not being able to climb stairs or lift more than 10 pounds or walk enough to go grocery shopping. I had to sit for showers, I had to rest before getting dressed after showers. I was out of breath by the time I got dressed. The struggles breathing resulted in my heart rate sky rocketing, oxygen drops and coughing fits that resulted in vomiting, which resulted in peeing and sometimes leaking stool on myself. This was a daily occurrence unless I just stayed inside my home and did little to no activity. That increased my pain. I wasn’t sleeping and more symptoms became aggravated. 

During all of this My Doctors ran numerous test and added tons of medications. We went through several changes and never got it right. I just kept getting sicker. I ended up by April having such severe issues with my heart rhythm that I was admitted to the hospital having nonspecific intraventricular conduction delay disturbances, and several other abnormal heart rhythms along with being very bradycardia and hypotensive. This led to a heart Cath in July. My lung volume and diffusion capacity continued to decline. Monitoring showed issues were present but scans couldn’t visually see a problem. Test results showed there was a problem, but Doctors didn’t have any answers for me. 

Here we are almost a year later and I honestly felt like I was losing all quality of life. I thought I’ll never be able to fully enjoy being active again and who knows how long it will take to find the answers. While I still don't have answers, things are improving. I made a choice to stop all pharmaceuticals and it was the best decision I ever made. My heart rate seems to be more stable. My lung function is no longer declining at the moment. My spasms have nearly stopped. I have not vomited in almost a month. I went to a corn maze and enjoyed myself, while it was exhausting and I got a little short of breath, I didn’t need my cane, and I didn’t have to sit down and I was able to keep up with the kids. I have been sleeping and my pain is even better controlled. 

I have not opted for no treatment, I am using Cannabis now as a replacement to all the pharmaceuticals. I was on 15 prescriptions a day, 39 pills a day if I was lucky that was all. I am only 38 years old. It really started to dawn on me that medication could be a big part of my problem, as it has been in the past on more than one occasion. I really didn’t want to go down that road again. So I decided to speak to my Doctors. They all agreed that maybe the medication was a problem and supported my choice to stop and use cannabis instead. I still see my doctors but I’m taking only 1 prescription medication now and that is for Gerd. Unfortunately I tried to cut that out as well but my stomach is just not in a place to tolerate not having the medication yet. Or I guess I should say I am not willing to be that miserable. 

I don't believe I am cured, and I don't believe that I will never have my symptoms worsen or that I ll never require the use of medication again. I just know right now in this moment I feel better than I have in years. I feel pretty great considering all things. I know that my breathing problems still exist and I know that if I do certain activities that it will get the best of me. I need to be patient with my body. I don't know what the future holds for me but I know that this has brought a whole new desire for me to push awareness of the dangers behind pharmaceuticals and the benefits of using cannabis as a natural treatment option. Stay strong and Kick Some AS 

Friday, August 16, 2019

I Don't Have Enough Energy to Be Sick

I Don’t Have Enough Energy to Be Sick

Over the course of my journey one might say my health rapidly declined. From the avid hiker doing 5k’s in 2016 to the now unemployed 37-year-old awaiting a disability hearing in 2019. That fast, I went from traveling the country to hike, to fighting for air, having a cardiac ablation and electrophysiology study, hospital stays for abnormal EKGs, declining pulmonary function, Liver fibrosis, and multiple gastrointestinal issues. A girl who once provided medical care in emergency settings and could spit out vital signs and record medically important information without missing a beat, now can’t remember a 4-digit code longer than a minute and has to have things repeated constantly because my body is so fatigued, so exhausted that all I have the ability to do anymore is be sick. 

Don’t get me wrong, this hasn’t stopped me, I put my heart and soul in to advocating, raising awareness and trying to change the future for others like me. Sometimes, I have to take a step back and rest. However, resting truly brings to light how much worse things are. This is why I have an important topic I want to discuss with you al today. That being, why exactly has my health declined so rapidly? How do I fix this or can I even fix this? The Answer, is pharmaceuticals, that is why my health is getting worse. By all means if you find relief, use it, by please, I urge you do not accept something that truly isn’t working and genuinely has impacted your health for the worse. 

When I first got sick, the answer was NSAIDS. The go to treatment for inflammation. Sure, accept that it destroys the rest of your body. They don’t regularly monitor your liver function when you are on medication for no reason, it is because these medications come with the known risk of causing liver problems. Do you know what else NSADIS do? They cause stomach problems. So, here I was hiking, living life, working, caring for others, and all of a sudden I started slowing down, until I just couldn’t anymore. NSAIDS caused severe GERD, which even after over a year being off all NSAIDS, I still have uncontrolled GERD and require yearly EDGs because of the damage. I know have Barrett’s Esophagus and require biopsies to monitor for signs of cancer. I have to have procedures done to attempt to repair my lower sphincter every year. I am developing rings of scar tissue around my esophagus, causing swallowing, digesting and I have spasms of my esophagus. My stomach and intestines are biopsied every year as well because of constant inflammation, and abnormalities. Then of course, I developed Liver Fibrosis. 

Digestive System Chaos

It is moments like right now, that make me question how anyone doesn’t understand why those of us who are fighting chronic illness never have any energy. In this very moment, my body is battling the many different things it is feeling all with absolutely no energy. I need to throw up, yet my body is so fatigued that I can’t even physically make that action happen. When I finally do end up in that dreaded position, as my body uses all its limited means to react to this unpleasant symptom, it triggers 50 more actions that my already depleted state struggle to manage all at once. 

I know it doesn’t sound pretty, but I already struggle to feel enough air in my lungs, the unrelenting urge to vomit from my many intestinal issues won’t go away and now I’m relentlessly coughing, and practically trying to perform acrobatic skills in order to not have other bodily function issues during the process. Who really wants to read about this? I know I don’t, but this is about being real, and honest and telling the world what being sick everyday is like. So yes, I vomit and often in those moments I am trying not to piss and shit myself! When You get sick with something that is systemic, no part of the body is safe. Now, I apologize for the TMI but this is life, and when my energy is gone, I definitely don’t have the strength to battle those components all at one time. 

I’m currently getting ready to have yet another extensive test to look at my digestive system. A relentless day of long waiting, being uncomfortable, probably frequently needing to have bathroom breaks and all in hopes of answers that just may not come. I do have intestinal issues that we are not certain what they stem from, could be the Ankylosing Spondylitis, could be something else altogether, and yes, could be medication related. We just don’t know. Yet part of my issue is that the Medical world is not really here to help, and neither is the insurance company. 

I should not need to battle my insurance company to pay for a medication to treat nausea and vomiting when there is a perfectly good, free, safe and effective plant that could be used to help treat this. Instead, I have to suffer the symptoms, get denied by insurance, told I have to pay high out of pocket expenses to get little benefit. Or constantly be begging the doctor for more help getting a few more pills at an affordable price. Why should I have to fight so hard? Especially when a solution is available that could help if ingested. It is an anti-inflammatory get, immune modulator, and it balance our internal cannabinoid system. It decreases stress and anxiety in turn improving your gut health. 

Hemp Helps Me it Can Help You

It is time we put an end to the laws that ban the use of a plant! It is time we let the people gain access to the things that can help them naturally. No waiting on insurance to decide if you have the right amount of money, coverage or anything else, they don’t have the right to dictate the quality of life we get, and neither does the government! I am proud to be working on a project with an amazing team to bring the progress needed to provide such change. We are all advocates wanting to fight for those who need and deserve to feel better. Our group is on Facebook, Instagram and Twitter at Greener Pastures Hemp Expo and our website is greenerpastureshempexpo.comPlease come join us if you want to be a part of spreading the word, or just need help knowing what might work best for your medical conditions. We have several people battling with medical issues that limit their abilities working on this team so we have knowledge, experience and connections. A non-profit has been formed under the name of Sri-Cities Hemp Awareness Coalition because that the goal, spread awareness, bring community together and help others through education and other sources. 

This is definitely a new passion of mine, as I am using CBD to help manage some of my symptoms and so far I have decreased several medications without any issues. I no longer take anxiety medication, I’m also no longer taking sleeping medication, and a few of my stomach medications have been able to been dropped down. This is only after ingesting for a few weeks too. We have plenty of success stories and would love to hear from you. Also, don’t forget to follow my blog here at k.kicksomeas.comfollow me on Instagram, twitter and Facebook Kick Some AS, Giving Spoons and Giving Spoons to kick some AS as well as A Spoon for of CBD/THC helps the medicine go down. Last but not least if you are in the local east TN region please check out my support group on Facebook Bristol Spondylitis Support Group and email me at

#KickSomeAS #GivingSpoons #GivingSpoons4AS #GreenerPasturesHempExpo #TriCitiesHempAwarenessCoalition #WalkASOne #BoardMember 

Thursday, July 4, 2019

Patient Leader Recognition

Let's Talk Awards

If you have not heard, there is a group called WEGO Health that has created a recognition process for patient leaders. This is such a wonderful thing. To have so many people out their fighting to bring awareness and support to those in need, they deserve to be acknowledged. Across all forms of health advocacy there is a way to recognize those that put their heart into helping change the way for others to come. For some people this may not be a big deal, but let me just tell you that suffering from a chronic not well understood disease, that the work these people do truly does make a difference. I of course would do this regardless, but it is just unbelievably meaningful that a group of people decided that patient leaders deserve to be acknowledged. You can nominate people for being a patient leader hero, for their work in advocacy with the community, or even on social media. They offer awards for all social media forms and blogging as well.

Being Nominated

I have had the great pleasure of being nominated for now 5 different categories, and this means so very much to me. I can't even begin to express the absolute honor and pride I feel just for having nominations. I put my heart and soul into working with and for the AS community. My absolute dream is to turn Giving Spoons into a World Wide known and successful support system for those suffering from Ankylosing Spondylitis and other forms of Spondyloarthritis. As some of you know my dream is to offer support emotionally and physically. I won't to build a community of people that are connected and able to be there for Doctor appointments, or surgeries, going to the ER, offering rides to get medications, and even creating a family to celebrate holidays with. I want this because far to often I see others talking about the lack of support they have. No way to get to appointments, nobody to be there when they have a need for care after a surgery. I not only want this, but I want to have the ability to financially cover medications, help pay bills, by needed medical or assistive equipment, food and even clothing and other potential needed items. Id love to offer care packages to those in need. Something I want to be of no cost for those who are struggling.  Having the ability to be recognized for the efforts I am putting forth could help me achieve this dream.

How Can You Help

Well, I can't do this alone. I need as much help as I can get. So what can you do for the AS community? You can go online to WEGO Health Awards Nominees and search my profile Summer Canady and endorse me. You can endorse me once for each award nomination so a total of 5 times. You can share this post, my other posts on social media and ask others to help me achieve something great for the AS community. They may not understand Ankylosing Spondylitis but everyone understands supporting a good and worthy cause. So simply just tell friends and family that someone you care about greatly has been impacted by health issues but is trying to do something good with the circumstances and that it would truly mean the world to me and you if they just went online and clicked that endorse button 5 times. It's that simple. They don't have to give money, or do anything else. Just go endorse. Hey if they want to scroll through the nominees they may even discover something else they just think deserves the credit too. Endorsements are kind of like voting and will be open until the end of July.

What Happens After That

Well, the 3 top endorsed nominees from each category automatically move to finalist, then a panel of judges will select 2 more for each category making a total of 5 finalist in each of the 15 categories. The panel will judge and pick the winners. Winners are then invited to Las Vegas to be acknowledged at the ceremony. Opportunities to work with over patient leaders, participate in advocacy and awareness events and be a board member for a year with WEGO Health. all of the opportunities are huge for someone working with a disease that just has so little recognition. This kind of opportunity could open up countless doors and provide incredible resources and connections. Not only could this be the chance I need to help make Giving spoons be the dream I want it to be, but it could also lead me to the connections that help me find all the answers to my health issues as well.

Show Me and the AS Community Some Love

I do this for hopes to find better health outcomes for myself, but in all honesty, I do this because I don't want others to suffer the long times before diagnosis, to be struggling financially, to have inadequate health care, to be so misunderstood, but most importantly in hopes that the medical community gain a better understanding of Ankylosing Spondylitis and the complications that can come from having it or from not having a timely diagnosis and treatment plan. I also want to see improvements in medications because so many of the things available are very damaging to our bodies long term. This is just not acceptable. So please, show the AS community some love by just hitting that endorse button those 5 little times.

Thursday, June 13, 2019

Trauma In The Procedure Room

I wanted to let everyone know I'm okay physically and working on the mentally. This is something I felt needed to be talked about.  Yesterday's procedure from start to finish was just one very bad experience. I had an Electrophysiology study with Ablation.

They didn't find any damage and said the issues I'm having are from a naturally sensitive heart. (Go figure, nothing about me is normal) I'm likely to have episodes on and off all my life. (Yay me) I need to really listen to my body and learn triggers. Now, let's move on to the fun stuff.

This was the most horrific thing I have ever experienced in my life. From the scheduling down to the procedure. It all started with my procedure needing to be rescheduled more than once. This was very inconvenient. They did not listen when I told them about limited ability to have someone be there. Part of my family lives out of town, the other part works full time and it's not always easy to get a last minute day off, especially if it keeps getting changed. The office didn't care. It became even more clear upon my arrival yesterday.

 This date was finally supposed to happen at 1p. I get there and they say I'm an hour early. I'm not scheduled until 2p. I had to wait on them to get a room ready for me. So I'm sitting in the waiting room, waiting for them to come get me. Less then an hour wait they call my name and the lady says I'm scheduled for 4p. (Shock and are you kidding me followed) she was not. How on Earth it changed in the amount of time from my check in to then I don't know. They even said he was ahead of schedule.

My friend needed to run out and they took her number and said she had time. I sat in holding and it really wasn't for all that long and they came and took me back. Never called my friend or anything.

Once I'm back there they get me all setup and tell me I'm not allowed to move at all. Then everyone disappeared and I couldn't see anyone and the voices all sounded like they were at a distance. I laid like that for a few minutes and then the Dr. Comes over with the anesthesiologist and they say they are going to numb my leg and give me sedation.

The whole procedure only lasted about an hour or so. Thank God too, because from that moment on it was like a freaking horror movie. I did not get numb, he didn't even check to see if I was he just started putting the catheters in. 3 of them and it hurt a good bit. Enough it made my body tense up in reaction to the pain. My back arched up off the table and everything. I never got sleepy. At all! Nobody told me I'd be awake. Or that they were starting. I can't see anyone again. Sounds are in the distance. Then all of a sudden the most severe pain I have ever felt in my life started. Right in my chest. Because he was manipulating my heart. Ten doesn't describe it. It was so severe that instant tears were flowing down my face. My entire body would tense and I was trembling because the pain was that bad. I couldn't even speak, I just couldn't make myself because it hurt so bad. Nobody was saying a word to me, or checking on me. They were all chatting like they were at a Friday night get together. When someone finally checked on me they didn't seem to care. They told Dr. and they gave me more medicine but didn't bother to see if it was any better then walked away again. So I literally laid there for the entire thing feeling this God awful pain. Feeling alone, and scared, and confused, and abandoned. A little compassion would have been so nice.

The Dr. comes over tells me he hasn't found anything yet but he isn't done yet. Then says he can't give me any more medicine and walks away. So I just laid there praying I'd pass out so I didn't have to endure the entire thing.

Emotionally I was all to pieces when it was over. I just don't understand how or why they would think that's an okay situation. To completely ignore a patient laying on a table having things poked around inside their heart. I mean the thought alone is scary. To not talk your patient through what's happening, offer no compassion, and just allow them to lay there confused, scared and hurting not understanding why, it's just not acceptable.

I feel like a complete idiot for allowing it to bother me, but it did, a great deal. It was definitely something I'd call a traumatic experience. You here those stories of patients waking during surgery, this is what it seemed like, except I never went to sleep. My leg never got numb and I didn't even feel the slightest bit drowsy.

I have talked to others and read plenty about it, it is a procedure that can be done with me under sedation. So why on Earth would that just make me suffer? I have a high tolerance to pain. I am not a wimp, so it's not a matter of it just being I can't handle pain. They gave me pain medicine and a sedative medicine but neither of them did a thing for me. Maybe my body just didn't respond to what they gave me, but why is it that someone didn't do something to make me more comfortable?

Just the simple gestures would have been nice. Staying within my line of sight and talking to me. Holding my hand, letting me know what's happening and to expect pain. Those things can go a long way. Instead, I might as well been in a room all alone, because that's how I felt.

I suffered through a procedure to not get any real answers or solution. To just be told that it might happen again. Then to top it off, a Dr. Comes in hours after the procedure to talk to us and has the nerve to say to me "maybe you just need to be more calm so your heart doesn't race" and literally holds his hand up for a high five! I wanted to high five right in the face! Then he had the nerve to seek praise from me as well. Giving thumbs up and asking me "I did good right?" No jerk, you didn't. Yes, you said I could go home, but you came in here and basically told me my heart issues are my fault because I'm not calm!

Talk about frustrated. I was certainly frustrated and I feel I had every right to be. I still managed to find smiles yesterday though, even through all of that, because I'm actually not a miserable stressed out person. My experience was awful, but it's taught me more valuable lessons I can use in being an advocate and raising awareness. So overall, at least I got something out of it.

Take care, stay strong, and always Advocate for what you deserve. Don't take crap like this. Report it, don't feel bad for it and be sure to focus on healing mentally after an experience like this. You don't want it to be a life long trauma for you.

Tuesday, May 21, 2019

Validation at it's best

Along my journey I have been given many opportunities. Things I never dreamt being sick would lead me too. Meeting people and developing life long relationships. This has been an experience I want to talk about some. I'll get more into the details in a moment. First I want to talk about something that I have seen a great deal of concern with. That's the pharmaceutical world. When you are sick, not only is that the last place a patient expects to find validation, but it's also the last place we expect to find compassion, or even a desire to learn how to best help us. It's always been a part of health care that a patient tends to feel is all about profit. Quantity over quality. I'm happy to say that this blog is going to talk about the complete opposite of that, in the most POSITIVE way I have ever experienced.

This weekend was my first opportunity to be face to face with members of a pharmaceutical company and have the chance to discuss my journey with Ankylosing Spondylitis. When I tell you this was an INCREDIBLE experience, I just don't know how to make that word have enough emphasis to truly make the impact it needs to. A very small group, just 9 of us were invited to speak with the Eli Lilly Company. Per their request, they wanted to get a real understanding of a patient and their journey with this disease. Everything was about us, what can we teach them! I can't tell you how incredible that was to hear. Coming from something we as patients have little faith in, I HAVE NEVER FELT MORE VALIDATION then I did this weekend.

See, we deal with having an extremely expensive medication available for treatment, and no other options. This is often the case. You see companies extend the time before generic medication can be used. You see prices go up, not down over time. It leaves patients with little hope that treatment will ever be affordable. What about all those commercials we see on TV? The people always look like the healthiest person, capable of anything. They never show struggling people, really sick. Then what's that tiny writing at the bottom of the screen, as the voice over rambles off as fast as possible 30 different potential side effects right before adding "for a full list of side effects please see..." We are already sick, who has time to deal with all the extra problems the medication that's supposed to help us causes?

With this company, one of the things we got to discuss, was a need for affordable medication that also isn't going to destroy another part of our body in the process. Like with many medications, you risk liver damage, kidney damage and gastrointestinal damage. It's just putting enough back to compensate what it takes. We should not have to weigh the odds of risk verses benefits.

Something else in this meeting, was a statement another member made. We don't have a health care system. We have a sick care system. It's not about proactively treating people to prevent illness. It's about masking symptoms and being told no by insurance companies, all while feeling like crap and just wanting adequate care. Insurance companies dictate things for people they have never met, and have no understanding of. Yet, they make a decision in a matter of moments based on what? It's not our best interest!

You have patients you can't get good care because they can't afford it, while others receive top of the line. Again, because insurance makes a decision for us. About what we deserve. Doctors don't want to put the time and energy into patients they won't get good pay for. So they dismiss you, and give you the run around because that's the only real way they can make money on poor patients.

We need to see a system change, and maybe it starts with companies like this just caring enough to listen to the patients. I truly enjoyed the experience and I look forward to seeing what comes in the future. Together we can make a difference.

Wednesday, April 17, 2019

50 Shades of Advocating

What is an Advocate

Almost immediately I knew I wanted to look into advocating when I was diagnosed. So the big question was, what does that mean? The easy answer, it means I'm going to help others in need of support, provide education and make people aware of Ankylosing Spondylitis. This is in no way a small task, and for people that choose this path that are dealing with health issues, its a monumental task. One that should not be entered into lightly. You need to understand what you are accepting by taking on this role. You are saying, yes I will stay up to date on research and medical information. I will help others find accurate and accountable resources. I will help educate by using accountable and accurate resources when I see something inaccurate. I will make myself available to others in need. I will become a public figure.

So what happens to all your hard work when you are sick? As things in my life have continued to worsen, I have had lots of questions about my projects, my efforts as an advocate. What happens if I am to sick to lead my support group? Who will answer emails and messages if I'm just not capable? Will all my dreams and hard work go to waste? What about all the people I was helping get through another day? If I'm gone will anyone find enough value in Giving Spoons to keep it up? For me, I think the same arrangements should be made as for anything else in your life. You don't have a family without deciding who will become responsible for that family when you die, so you should be ensuring that the family created by your advocating has someone to care for and provide for them when you are gone. So I did just that. I have plans for who will take over my awareness projects. It is documented in my final plans what should happen. I have someone designated if I am too sick. My family will not suffer because I knew when I took this responsibility on that I had to do just that, be responsible on my good days and my bad.

Don't put the weight of the world on your shoulders

None of us can do this alone. We all need guidance, support, comfort, something at some point along the way. We will all probably have questions too. If you want to be an advocate, I think its important to know your limits, and not exceed them. It's also important to know you can ask for help. You don't have to take on the world alone. We are a community of caring people and we want to help, that's why we are advocates. Some days I think to myself, I just can't listen to another person insult me for my choices on treatment, or lifestyle. Other days I am thriving on the recognition something simple gained. For each defeated moment, there are at least two positive ones. It has been nothing but a blessing for me. I have had other people attempt to steal my work and offer it to others to use as they see fit. I have been praised endlessly for something so simple that was just what someone else needed in that moment.

I have had Lung disease, liver disease, and heart complications all limit my abilities. Becoming disabled, having to get through some financial struggles, having failed relationships with friends, family and significant other. I  Brought home by children dying father and cared for him on his death bed. I took on the responsibility of being his mothers power of attorney. I'm dealing with a troubled teenage daughter, and homeschooling her. I started the first support group in my state, and created social media accounts all geared towards advocating and awareness, I started this blog, and a project called Giving Spoons. I am a board member to another non-profit. I have 9 million irons in the fire, but I have help. Back up when needed, people I can turn to when it is becoming to much. I have a team of people I can depend on to help me ensure my health is number one, and that if I'm down, my family, my community doesn't suffer for that.

More than one way to advocate

For some people, advocating to the level I try isn't going to work, or just isn't what they want. That's okay too. Nothing says you have to advocate a certain way, or do a certain amount. You can find what works for you and your community. We are all a community, but once you start projects like support groups, you will see that you form a community inside a community. You become known to those people as something much more. You are the reason some people have a glimmer of light. You give them the strength to push forward. You might be the only person they have tried to seek support in. It is ultimately a responsibility to ensure that you are doing right by your community. That's why you should have arrangements in place for when you need self care.

If you can't balance the need, and the work for your own self care, maybe a leadership role isn't for you. Maybe giving support from the sidelines is the best role. The point is, there is no wrong way to be an advocate, nor is there a lack of need of any role. The most important thing, is to remember that If you take on the role of a leader, you are taking on responsibility for a community that looks to you for guidance and support. Be sure you understand the great toll this can take, and be aware of how much you have to give. Set your limits, make a team of people to help ensure you and your community are heard, and supported at all times. These are things that I have recently been thinking about a lot. Because I am a support group leader, and sometimes people are going to express their disappointment in you. We are not perfect, and we are sick, but so are they. We can't loose sight of that. It just so happened that I was confronted with such a hurtful situation.

Be the umbrella in the storm

As I was feeling worse and worse, my strength depleted, my body physically and mentally exhausted.  I knew even though it was time for my support group to meet, I wasn't in any shape to attend or lead in anyway. I had not yet created my team of back up help, or alternate methods to provide that group setting. It was that day that showed me just how important the role I had was. I wasn't just a person, I was a leader that others seeked out for understanding and hope. I contacted all my regular members and told them of the cancellation due to me being much sicker on that day. It was about twenty minutes after the scheduled meeting time when I got a phone call. Not a pleasant one either. This gentleman had never attended a meeting, we had never exchanged any type of communication. He was very angry that I wasn't there for the support group.

I apologized over and over, and explained what was going on with my health in that moment. He. did not care, he informed me I had a responsibility and that if I couldn't be responsible then I shouldn't be leading the group. I again, explained I'm diagnosed, and as a sufferer of AS you should understand the unpredictability, the way it can make you feel! His response, was yes, but you took on this role and we came a very long way to find out there was no meeting, and that's not acceptable! I offered to meet with them because I felt so bad that they had drove several hours, but how was I to know? I couldn't possibly know someone would come from so far and not reach out to me via email or phone first. I realized right then and there though, I did choose this, I started this, and I just left them hanging because I felt bad and had no back up plan. That definitely wasn't responsible on my part. So yes, our lives can be challenging, and things can make a turn for the worse, but every storm runs out of rain. Until it does, be the umbrella, offer some kind of protection because we all have storms.

Thursday, March 7, 2019

A Story of Love and Addiction

In The Middle Of A Memory

It is moments like this when it hits me the hardest. In the middle of a memory, but something is missing.  I have so many moments like that this year.  Our daughter will be graduating from 6th grade and transitioning to Middle School. Our son will be graduating from 8th grade and transitioning to High School. Our oldest boy, he has fell in love, turned 16, gotten his learners, learned to drive and went to Junior Prom. Later this year he will get his first job, his drivers license and attend the Candle lighting ceremony to transition into his Senior year. That’s a lot of memories to miss out on.

Maybe its just because I am the mom, doing what mothers do and worrying about my children. This is a moment that only reminds me of all of those moments to come, the ones when my children will be heartbroken that their father is not there. One day there will be weddings, and a sweet little girl with no father to give her away. Then come the grandbabies and no pawpaw for them to cuddle and play. I cant even begin to imagine what feelings these children hold inside. I only think maybe, just maybe these thoughts don’t cross their minds. All of these thing have come so quickly, its not even been a year since you’ve gone. I know you’d be proud of them, they have so much of your personality in them.

Fairytales Do Come True

See those children I speak of, they lost their father just 9 months ago. It wasn’t some freak accident or another unexpected tragedy. It was to addiction, drugs of evil consumed him way before his time.  One boy and I are the beginning of this tale, the heart of the pain and it’s not easy to tell. It most certainly started a story of fairytale sorts, yes the kind that start off Once Upon A Time. This man used to dream of a girl, a faceless girl that always brought him peace, comfort and protection. He talked in such beautiful words describing the way that he felt and the visions he would see. He had lots of time for day dreaming as he was a trucker you see.

As fate would have it, their lives would cross paths, one of those meetings that you know someone greater than you had a hand in. From that moment forward he knew she was the one. She was young beautiful and he was a wild dirty trucker who thought he never had a chance. Little did he know that she was crazy in love with him too.  As the days go by, she discovers his book, the stories he’d wrote and how she took on a new look. The dreams now showed a face and that face it was hers. She never really understood the depths of his love, but she never needed too. It wasn’t long before a child was on the way, the first born a son. Suddenly this man changed in a way no one ever expected. He no longer wanted to be just a wild dirty trucker. He wanted to have a family. He proposed and they were married. their family continued to grow and before you knew it there would be three.

Whiskey Lullaby

It would seem life was going well for the lovers, family that is healthy and happy, thriving job, you would think they had it all. Greed began to set in as he liked the money and what it was providing them with. He thought to himself, what does it hurt to take a little stay awake hit. One pill turned into two and two turned into three. Money started going missing and there was no explanation. Bills not getting paid and come home less and less. He started wanting to send the kids off to the grandparents and throw parties with the young 20 something neighbors on the days he would be home. It was this very behavior that finally gave away to the truth. This young bride and mother of 3 was now watching the man she had loved for 9 years of her life turn into someone else completely. He wanted to be drunk, and was flirting with girls and then it came…Whose got a line of Coke!

A shattered girl turned and walked away, into the darkness of the night, she walked and walked hoping that her nightmare would go away. It didn’t seem to matter how much she walked, the ugly truth awaited her at home. She made a decision not to bring it up that night. She kept it all in and waited for him to leave on the road again. If you are familiar with addiction, you will know that he didn’t even realize there was a problem. Over the course of the next month she tried to talk to him about the missing money, and the unexplained charges and past due bills. She knew the money should have been there, but it was nowhere in sight. He came up with lie after lie trying to just cover up the truth. Eventually he grew tired of her nagging and accused her of cheating, that had to be the answer to all the money missing and she was just trying to blame him as cover up. Frustrated and broken, she gave him one final ultimatum, come clean or she was leaving! He made his choice and told her he was cheating and that’s what it was. She packed her things and left that day.

The Beginning Of The End

I guess he never thought it would drive her away, I guess addicts don’t think about the consequences of a lot of things. You see, he still really did love her, a love so deep that her walking away was going to be the death of him and not even he knew it. He never really knew how to deal with pain. Alcohol and recreational drugs were the answer to that. He put all that behind him when he became a family man, the moment she said, I’m Pregnant, he turned away from everything without even a blink of an eye. Suddenly he was thrust into a world of hurt and pain like no other. He had not only lost his wife, he lost his family, 3 beautiful children that were his world. It was a heartache they didn’t make a strong enough fix to hide. The day he came home, and found her gone, he started going harder and harder on the drugs. It was pills and cocaine and pot and alcohol, every single day. He stopped seeing his kids, and even his own parents for a while.

He jumped into one relationship after another with someone who could provide him with yet another drug to cover up the pain. Each time they failed miserably and each time she came to the rescue and  helped him back on his feet. She tried so many times to get him help, to offer him help, to even take him back in order to help him get his life back. It didn’t matter, by this time he was to far gone, he was addicted and now it was even harder to cover up the pain.  Then his father passed away and he spiraled out of control. The man who can’t deal with pain, suddenly couldn’t find a reason to live any more. It seemed that from this moment on it was all about trying to find what drug would finally end it all. He went to jail, was in and out of rehab and she still did everything she could to have his back along the way.  She tried to show him he was still loved and cared for and that he had a reason to live.

The day tragedy struck

He pushed her as far out of his life as he could, he did everything in his power to make her hate him and, Trust me she did. He was on Meth so regularly that it became difficult to tell when he was and wasn’t high. It just took more and more to kill all those feelings that never went away. It was now showing in every way that he had destroyed his body. She tried to tell him to get help, see a Doctor, anything because if not he was going to die. He told her every time, “Nothing can kill me.” Then came the day she got that phone call. Even though she knew he looked like death, it was still a shock she will never forget. “Jim is in the hospital, it’s bad, he may not make it.”  This is not a phone call anyone wants to get. Especially not when you have to turn and say those words to your children at 11, 13 and 15 years old.  She thought She was going to hate him forever just because she was going to have to say those words to his kids.

She anxiously awaited news of his status and prepared the children for the news. The call comes in and its still bad, he is headed to Abingdon hospital. That didn’t last long, he is on his way to Johnson City. By the end of the night all we knew was he is in ICU and on a Ventilator and they said it is drug related.  The next day at the hospital she walks in to see him weak and helpless and something in her heart just shifted. She couldn’t be angry, as much as she wanted too. Her heart simply broke for her children because she knew now it would be true. He came around and was taken off the vent, His children visited him and he struggled to share some private words with them. Then he listened as the Doctors talked to his mother and her. He had gone for a long enough time and done such a large amount of drugs that it had destroyed his body. His heart was in no shape to survive among the many other issues he had.

He didn’t believe the Doctor when he told him he had 6 months or less to live.  In fact he argued then that nothing could kill him, and he would walk out of the hospital. That night he would be on a ventilator again. It seemed like forever that this continued and finally people started asking for decisions to be made. His mother didn’t want to do this even though we all knew his wishes. I talked the Doctor into getting him off the vent one last time and making him answer those questions. They did, and oddly enough it turned into a wonderful day for him. He told them no more vent and he didn’t want to be on machines and to list him as DNR. He still told them he wasn’t dying though. He ate like a king that day and spent time with all of his family including two special people from his past who had came to show support and love. She would sit by his side every morning and every night holding his hand while he cried out in pain, until the day he decided he wanted to go home.

Then your pain was no more

They told him he could only be released on Hospice and that they would get it all set up. He still didn’t think he was going to die. Upon her arrival to the hospital that morning she was told the news, he is being released to hospice, “do you know if his mother is on her way?” She contacted his mother and then began asking questions. She told them he can’t go home with her, she just cant take care of him and he doesn’t need to be around the drugs.  She knew she needed to take him home with her, so they began to set it all up and explained to him what was happening. The nurses then explained to her that he didn’t have 6 months, they would be surprised if he made it 2 weeks. He once again had a wonderful day, he enjoyed time with his children and had some long over due meaningful conversations with her. He told her not to feel responsible, but that he was sorry he didn’t do better. He was sorry he ruined his family and he was most of all sorry he didn’t know how else to deal with the pain of losing them. He told her in all these years, its always been about covering up the pain of losing them. He loved her so much, that he couldn’t face what he had done.

Over the next 3 days, he quickly faded, but she knew in her heart she did the right thing. He finally had his family back, and he found peace in her forgiveness. She took care of him and provided him with that place of peace, comfort and protection that he had long ago dreamed of. She still isn’t sure if it was confusion, or the heart talking, but in the final days he needed her, her asked for her and he found comfort in her. She was his wife again and he referred to her as so. He went to sleep peacefully with her by his side holding his hand. The next morning, she new this was it, and she called his mom to come. They talked with the children and they all surrounded him with love. She held his hand and wiped his forehead calmly reassuring him that it was okay. He took his last breath and she kissed his cheek and whispered I love you.

Suffering of an addiction

This didn’t put an end to their pain, it simply was the beginning to a whole new pain. She didn’t know how to feel after losing him. She didn’t understand why it hurt her so bad. She felt for her children, but she didn’t understand why she felt more. Slowly she learned that it was all meant to bring a sense of peace. She feels him with her often and always in times when she needs guidance and comfort. He is protecting her now. She feels sad for the memories that he wont share in, and she wants their story to live on in the children. She has vowed to share only the love and the good so his grand children will know the man he once was. His children will grow older, and every day look more and more like him. They will move on to become someone and his memory will live on.

His name will not be forgotten, and his death was not in vein, he sacrificed a great deal, because he offered his life for her to understand the precious value of real love. See she never really understood it, not until those final days. She always wondered why she wasn’t good enough, and how a father could abandon their child. Now she understands his pain, and knows that even though he was weaker than the love, his love was real and true. She understands now that she has value and deserves a love that’s grand. She knows he found his peace and his life ended just the way he had always wanted it too, by her side and holding her hand.

Monday, February 18, 2019

What’s in a name, Spondylitis terminology

I Was Diagnosed, But Now I’m So Confused

It was actually February of 2016 when I got my diagnosis of Ankylosing Spondylitis. As you can imagine, I had no idea what that meant. That is, outside of the minimal information my Doctor provided me with. “It’s an auto immune disease that effects the back.” That’s the extent of what I was told. So I came home and I started doing research. I have worked in healthcare my entire adult working life, minus a few months. This has taught me a lot about reputable websites to do such research. I know, how can you ensure that I am providing accurate information? I am going to leave you some links so you can check out information for yourself. This blog is going to break it down more for you though. I came across words that only confused me. What did it all mean, where did I even fit in the list of terms? Spondylitis, Spondyloarthritis, Spondyloarthropy, Ankylosing, Undifferentiated, Non Radiographical. The list was overwhelming to say the least. I’m going to try and help out with that a bit.

As you already know, so many terms can be very difficult to fully understand. To think that diagnosis has improved over the years changing or adding to those terms, it doesn’t help clear things up at all. Then you have Doctors who are not familiar, and give it a name that either is outdated, no longer used or even incorrect. How are we supposed to learn anything about these terms when many Doctors don’t even understand them? We also have Doctors that are stuck on old research data, and stuck in old ways of treating, as well as diagnosis. Being in several social media support groups, I regularly see conversations come up regarding this very problem. People will literally argue about the facts. Then people who don’t know anything aside from what their Doctor told them pick up on inaccurate information, or explanations. This leads to countless people misunderstanding the actual terms and what they all mean.

Stay In The Know

There are so many words connected to the community of Spondylitis. First of all, there are umbrella terms which are used to describe a group of diseases with certain character traits. Then there are old classification categories and new classification categories. After that you have specific disease names. As well as the classification of auto immune verse auto inflammatory.  To just say this, it’s easy enough to see why there is confusion. Now I’m going to tell you that someone with Ankylosing Spondylitis can fit into more than one of these terms. So, how do we know what words to use when talking about our diagnosis, and what does it mean when our Doctors use certain words? Today I’m going to try and help clear that up. You can also check out my blog Ankylosing Spondylitis And The Sponyloarthitis Family.

It can be easy for us as patients to believe our Doctors know what they are talking about. In reality, a lot of Doctors still don’t understand Ankylosing Spondylitis. This can leave us without the best information. As you see your medical team, if they use an umbrella term rather than a specific diagnosis I urge you to speak with your team and get them to be more specific. Anyone that would like brochures on Ankylosing Spondylitis and such, please feel free to reach out to me or the Spondylitis Association of America. We can get you the brochures for free. You can take this information with you to the Doctor to help them better understand your health situation.

Understanding Terminology 

The umbrella terms used in the AS community are Spondylitis, Spondyloarthritis and Spondyloarthopathy. All three of these terms are referred to as umbrella terms because they overall cover each off the diseases in the the different classification groups. This means if a word
is used, the individual is referring to a group of diseases and not one specific disease such as AS. If    your Doctors tell you that you have Spondylitis, Spondyloarthritis or Spondyloarthopathy please dig deeper and have them be more specific. I also urge you not to use those terms as if they are enterchangable for the diagnosis of Ankylosing Spondylitis, this is not accurate. While yes any of those words could be used to describe AS, it would not be specific to AS. So in other words, you would be talking about AS, RA, PsA, ReA, or any other diseases within the umbrella category. The reason I discourage this is because we have enough trouble getting AS recognized in the community
as well as understood. If we use the umbrella terms, then we are not really teaching anyone about AS, we are also allowing the confusion that they are all the exact same thing, which isn’t accurate either.

Classification Of A Disease 

We have the Traditional and the Newer classification groups then we also have the Seronegative classification. That’s also a lot of terms to help confuse matters even more. All diseases that fit under the umbrella terms mentioned previously will fit into one or more of these classification groups. So, yes you could use an umbrella term, but then how would we or a patient know what that means unless they also know what classifications they fit into. The older  traditional classifications was broke down into 6 diseases. Ankylosing Spondylitis or AS, Enteropathic Arhtritis or EnAPsoriatic Arthritis or PsA, Reactive Arthritis or ReA, Undifferentiated Spondyloarthritis or USpA and finally Juvenile Spondyloarthritis or JSpA. Here we are again with several more terms. This however helps understand why it’s important not to have the habit of solely describing a disease with the previous mentioned umbrella terms, or by the Classification terms either. We as patients need our Doctors to help us understand fully where we fall on the scale.

With the newer classification group things got narrowed down a lot, but if you think that helps the confusion any, you are wrong. The newer preferred method to use only has two classification groups.
 All of the actual disease names we just discussed fall into one of the two groups. However, many
older Doctors either don’t know about the new classification, or just won’t use it. Leaving the confusion ever so great if they choose not to be specific. In our newer groups you either fit into Axiel Spondyloarthritis or AxSpA, or Peripheral Spondyloarthritis or pSpA. Axial Spondyloarthritis is defined by two of its own classification groups. You will either have Radiographic Spondyloarthritis, or Nonradiographic Spondyloarthritis. I just keep throwing more and more words at you. You might even have a classification of Seronegative Spondyloarthritis.

Axiel  And Peripheral Spondyloarthritis

If you have been told you have AxSpA you will either have Radiographic which includes Psoriatic, Reactive, Enteropathic or Undifferentiated or our great friend Ankylosing. Or you will have Non Radiographic.  This means that you show evidence on X-ray image. However, sometimes it’s seen on MRI or CT before it is on X-ray. So depending on your doctor and what images they prefer you could be bounced between the two if you change Doctors or see multiple Doctors.That doesn’t actually mean the diagnosis has changed. It just means one Doctor has seen changes on an image other than X-ray while the other only looked at X-ray and saw no evidence. It does take longer to appear on X-ray so this is possible. Most people with AS fall into the Radiographic classification, however some

With pSpA you are going to have more symptoms in the peripheral areas in other words you will have symptoms more often outside of the spine, in other joints. This group could easily be any of the diseases mentioned and in fact often times patients with one of the classifications often develope symptoms that put them into both classification categories. With peripheral there is no connection to imaging. It’s simply classified by having symptoms primarily not in the spine. Then we can even be given a diagnosis of Seronegative. What does this mean? It just means that you have no RA factor
present in the blood and have a stronger connection to HLA-B27 involvement.

Autoimmune Verses Autoinflammatory

Now we have the great debate on what is AS. Is it autoimmune or auto inflammatory? Well, nobody really has enough information to go on for this. It is preferred to be called Autoinflammatory. In our immune system we have the Adaptive and the Innate system. With the adaptive we develope antibodies to fight off viruses. In an autoimmune disease we have a malfunction and our adaptive system attacks the bodies healthy cells. Our innate system in a way does the same thing accept it’s not fighting a virus. It is fighting any foreign or harmful invader. The innate immune system triggers inflammation which in turn can lead to damage when the immune system has a faulty mutation. This means the innate system is triggered by our healthy cells and it attacks. Either can attack anything in the body.  Due to the lack of antibodies produced in an autoimmune issues, we are considered to have an Autoinflammatory issue instead. This just means those antibodies are not present but our immune system is still attacking healthy body cells and it is in turn causing an inflammatory response.

So How Do I Know What Ankylosing Spondylitis Is

Well, a good question, and surely you can see why this can be so confusing. My simple answer is that it should always be referred to as the disease name itself. Any of the diagnosis should be. If I have skin cancer I’m not going to just say I have cancer. I’m going to say I have Skin cancer, or maybe even just say I have Melanoma. Because if I just say cancer it could be anything from skin to lung. Nobody would know. So yes I advise only using the exact disease name.  However to answer your question I’m going to give you a rundown that will also explain why it’s so complicated.

If I’m diagnosed with Ankylosing Spondylitis, yes I have a Spondyloarthopathy or either of the other
 enterchangable umbrella terms because that isn’t the actual disease. If I just say that though, which one is it? Okay, we know I have AS, but am I going to tell people I have the newer classification or
the traditional classification? No, because that’s not actually a disease. Plus how would anyone even know what I meant, for all they know I could be saying I have diarrhea. If my Doctor prefers the traditional he is just going to say that I have Ankylosing Spondylitis. Pretty simple. However if he prefers the newer he may say I have  Unradiographic Spondylitis. So what would that mean, do I not have AS? It’s important to have the Doctor clarify, because you might not have AS, but you very well could have AS. How would you know what it is if you don’t ask? After all RA isn’t the exact same as AS. AS or Juvenile AS is the only thing discussed here that can lead to fusion of joints. While RA limits mobility it isn’t fusing, it’s crippling by deformities and destroyed tendons and ligaments. RA doesn’t form brittle bone like growth or turn tendons into a boney like state. Clearly neither are good.

So what if I changed Doctors and one said I have AS while the new one called it non Radiographic Spondyloarthopathy? It could mean a few things. Maybe the new Doctor is only depending on X-ray images while the old one may have used MRI or CT. Damage to the joints shows up sooner on MRI and CT than it does X-ray. So you definitely need to ask more questions. Yes you can have AS and not have evidence on X-ray. Now that we know this, what if they said I have Peripheral Spondylitis? Well, that can still be AS. You would just be having symptoms that are primarily not in the spine. Same thing if they say it’s Seronegative. It can still be AS. So you can have AS and clearly the umbrella terms cover that. You can also fit under any of the classification terms. You could also have more than one diagnosis that happen to fall into different classifications. That’s why it is important to use the actual disease name rather than any of the potential identifiers.

I hope this helps clear things up and shows the importance of using the actual disease name when discussing your diagnosis with others and with Doctors. I encourage you all to try and get your Doctors on board with this as well. I promise if a Doctor says this information isn’t correct, please reach out and request information to provide them. You may also look up information at links similar to what I use. Keep in mind even some websites use terms as if they are enterchangable for the
disease name, but they never should be used that way.

As always Kick Some AS