Category

Experience

Coffee cup on counter

Emotional Breaking Points with Ankylosing Spondylitis

By | Experience, Featured | 8 Comments

When it comes to Ankylosing Spondylitis, and we hear the word “broken”, we usually assume it must mean a bone of some sort. But, in the case of this post, I’m focusing on emotions. This isn’t a disease we volunteered for and the challenges test our limits daily. I’m honorably a mother, wife, sister, aunt, and friend and to constantly battle to pretend is exhausting. I find myself wrestling with my words as they want to leave my lips as to catch them so my loved ones won’t continue to hear my broken record or complaining. Sadly, I’ve realized this has become their mindset or even worse that I’m exaggerating, but as you know there is no way to exaggerate this pain. It is real, if anything we underplay the pain for their sake. Although, I try to limit my health hurdles talk, I find myself venting to my loved ones. When something, unfortunately, consumes so many of your days between doctors, flares, insomnia, infusions, medicines, and so on, you pretty much live a life that makes this become one of your unintentional topics. So I continue on my path of pretending to be well.

A few weeks ago, I got to that point. The point so many of us hit many times in our journey. I broke. I shattered really. I was going about my normal routine of playing pretend and something triggered me to break. It was something that an onlooker would think was so silly, but for me it was that last and final thing that I just couldn’t pretend to smile through for one more second. I’m embarrassed to share it with you, but at the same time I know as fellow AS’ers it is vital that you know you’re not alone and hopefully you can empathize with me so I must tell you the simple silly final straw that sent my week into a tailspin. Ready?

A cup was left on our kitchen counter.

Can you believe it!? I mean how dare the culprit in my family drink something and not clean it straight away! Normally, I would’ve just put it in the dishwasher. This time, I broke into a million pieces. I went from there and just shut down to everything around me. I know it had nothing really to do with the cup, but I needed something to focus on, and I found it in the cup.

When I wear down like that I go through an array of emotions of what I like to compare to a visit to the zoo. I start at the lions. I roar in nice and loud, make my presence known. Really what that is in our AS world is I can’t pretend I’m not hurting for one more minute. I need to release all my hurt somehow. Next, onto the bears. I say this because they hibernate. My bed becomes my friend. I don’t want to be unkind with any frustrating words or be bothersome to my family since I’m not feeling well. Next, onto the aquarium. Here you can choose whichever aquatic animal your imagination desires. I relax in the bath to get the warmth on my hips and back for a bit. I have music on that relaxes me. Finally, as I begin to feel stronger I’ll move to the giraffes and go for a walk or to my Pure Barre class to start stretching out again. Trying to stay long and flexible is so important to our fusing bodies. It works for me, not sure why or how, but it does. If you haven’t found anything yet, feel free to try my zoo. If anything, it’s entertaining and keeps your mind busy.

I think as AS Warriors we can control so little of what is happening in our own bodies and it becomes extremely overwhelming. We look for any possible control we can have in our life. For me it was a cup, for you it may be grocery shopping or mowing the lawn, but we all have something that will make us break. Mine are different each time. I always think I’ll accept that I will not be able to control what is happening to my body, but to be honest I’m just too stubborn and hopeful. On one hand, I have never been good at taking “NO” for an answer, so the fight remains in me. The other end of this is my enormous feeling of hope. I truly believe if we continue to spread awareness, we will find a cure.

Roller Coaster

The Year of The Roller Coaster

By | Experience, Support | 2 Comments

As 2011 draws to a close, I can’t help but look back at the past year of my life which was full of so many ups and downs. Ankylosing Spondylitis can be a challenge. Throw in health scares, full schedules, and a pinch of drama and you might as well put on your seat belt and get ready for the bumpy ride. I know it may seem silly to say, but I don’t think I would change any of it. I would of loved to have things modified a bit to protect my loves ones, but each adventure made me a better person. I wish my loved ones never had to experience their hardships, but also know they too were strong enough to handle them. I would say the way I now view my surroundings and the people in it are as  if I am seeing it, experiencing it, for the first time. I now look at things with a different perspective. Those who know me well know I was never a person who loved surprises, good or bad. I liked to be the person in control, and any loss of it could send me into a tailspin of frustration. I always believed in a higher power, but I wasn’t a person who really, truly embraced my faith…that is until this past year.

My AS has tested my physical and emotional strength time and time again. It is as if it sits there poking at me asking how much more it can do until I break. Many of us with chronic illnesses can relate to that annoying pain that tries to conquer us. It is up to us to silence it. I am currently on my 4th medicine, Cimzia, to try and control some of the pain and progression of AS. Sadly the pain is still not controlled. I will admit I have days where I wonder if I can really keep going on. The times when even opening my eyes or lifting my head from the pillow is a chore due to pain. Days when my hands, legs and feet are an embarrassment because I can barely use them. Sitting up straight is definitely out of the question most of the time and if I need a lot of energy, well, it just isn’t going to happen. After all of these “downs” I look “up” and realize there is a reason I was chosen to have these hurdles. God must truly believe in me, so who am I to disregard his faith in me? I instantly remind myself that I can push forward. It may take longer than a healthy person, but I will get there and in a positive way.

From the outside looking in my past year would really seem to test a person’s mental well-being. People seem amazed at how I approach the situations so positive. They see it as remarkable. I see it as the only way. The pattern of the year for me seemed to be good news, bad news, and repeat. I began secretly dreading good news because it meant shortly following bad news would arrive. Between my AS adventures with pain and medicine working and not working, my mother’s deterioration of health, my daughter’s cancer, misdiagnosis of cancer, and then a final diagnosis of indeed a malignant cancer for her, even the strongest person would break. I cried only a few times through all of this. I will admit there were days I wanted to, but feared if I did, I wouldn’t stop so I pushed forward. I have learned I cannot control what God has planned for us and must accept, or at least respect, the outcome he chooses. I believe life and faith go hand in hand. It is okay not always knowing the answers. Please know you are never alone in your battle, no matter what you’re facing.

To all of the people that either helped me through this ride with their amazing support or to anyone who has had a roller coaster year themselves, you don’t realize how positive, strong, and hopeful you can be until the only choice you have is to approach life in this way. I cherish the support of family. I have found extreme comfort in old and new friends. I have had amazing past friendships renewed and am absolutely grateful to have these people back in my life. I look forward to not only the year ahead, but to making many, many more happy memories with the people I love.

Sunrise

Conquer What You Can

By | Experience | 6 Comments

I always considered myself a strong person. I faced every hurdle that came my way without hesitation, and with courage and hope. I live a life with Ankylosing Spondylitis so every day can present a new adventure. To be honest, I wasn’t sure when I started this post if I was ready to share something that has consumed so much of my life recently. I was wrestling with the question if I was exposing to much. I realized if I have learned anything from having a chronic illness, it is never good to keep emotions bottled up. This new issue wasn’t even AS related, and those with AS know, this is a rarity for us. I thought if at least 1 person could relate to the crazy roller coaster ride I’m on and can find some relief in knowing they are not alone, it would all be worth me sharing this story. I am so used to hiding behind my smile due to AS, but this new test was more than my face could shield.

My story starts about 3 1/2 weeks ago. I really was in a happy place. It finally seemed as if everything was on the up and up for my little family. My AS medicine seemed to be doing the trick, we were settling into our new home and enjoying summer. Then all of the sudden, our world was turned upside down. We found out my daughter would have to face a huge challenge and she was only 12 years old. The doctor found a mass on a MRI and they told me she had cancer. They believed at the time it was of the muscle (Rhabdomyosarcoma), near the orbit of her left eye. When I heard that word from the doctor I literally felt like I was spinning downward. I had to sit down, catch my breathe, and walk back to the room where my daughter sat with no idea of what news was about to be delivered. I knew now more than ever no matter what emotions I was feeling I had to be strong for her. We walked in and she sat there with the innocence I had always wanted to keep for her, within seconds we would give news that would change her forever. I took a deep breathe as the doctor shared the finding with her. As tears poured from her confused eyes, all I could do was hug her and tell her she could win this fight. It wouldn’t be easy, but I would be by her side. My heart was breaking for her and this was something I couldn’t make all better. I was her mother, I was supposed to protect her from bad things and this demon that popped up had no idea who it was about to challenge. We would conquer. The wonderful doctors that cared for Alexandra were as aggressive as my mind set was so we instantly hit it off. Within days she was scheduled for her biopsy. We went to the hospital and she was so brave. A young girl who had never had surgery hid her fear with the smile I displayed for so many years. I saw so much of myself in her. You hear these horrible stories of other people’s kids and your heart aches for them, but you never expect it to happen to your own child. It was a nightmare I couldn’t wake up from. The biopsy was supposed to take 45 minutes and as I watched the clock and the 2 hour mark hit, I started to wonder what was going on. Were they able to take out the mass? This could be good that it’s taking longer. Then the doctor walked out, his head down and my fear set in. He told us that the good news was, most likely, it’s a vascular tumor and not muscular. He said in most cases this is a benign tumor, but we would not know for sure until we got the pathology report back. As we began to be happy, he began telling us about how she was bleeding horribly during the surgery (which is why it was taking so long) and they were not able to get all the biopsies they had hoped. They would have to depend on the 1 they did get to find out if it was malignant or benign. He then began rattling the list of things that could happen if we do not act soon. She could face blindness, life threatening surgery, internal bleeding and as he kept talking I went numb. I couldn’t hear anything he was saying. All I could think was…is this the good news?? This is MY daughter, not someone else. She has to be okay. He promised us he would get her through this fight. The doctors were very thorough by doing 3 pathology reports. It was benign! They diagnosed her with Lymphangioma, which is a vascular tumor of the blood vessels. They said she was definitely not textbook as how it presented itself, but we were all relieved she would not have to battle a malignant cancer. She has quite the long, challenging road in front of her, but we will get through this together with hope and a positive attitude. She will face many tests, treatments and surgeries, but I have seen her bravery and I know she can conquer anything that is thrown her way. She is her mother’s daughter. We do not take NO for an answer!

Through this nightmare I have been reminded to appreciate the little things in life. I learned how precious each moment can be with my children. The important role that the power of prayer, hope and faith play when it feels as if your world is crashing down. I learned what it means to have the right support system in place for my family. I know I should conquer what I can, but at the same time, know that some things are beyond my control. I was used to medical issues for myself, but when it comes to your child, it’s a whole other ball game. I have learned that my daughter, at the young age of 12, is one of the strongest people I know. She is facing so much unknown ahead, and is doing it with the courage of someone 3 times her age. She has already decided this new challenge will not stop her from doing all the things she plans in the year ahead. Her strength and hope to conquer what she can is simply inspiring. I will protect her with every ounce of strength I have in my body and soul. I may not be able to make this bad experience go away, but I can help her stay positive. I tease her about being an AmeriCAN, but in this instance, it is extremely important for me to continually remind her that she is stronger than any health hurdle that will present itself. She may have to live with a tumor, but she never has to live for it!

 

Necklaces

Untangling A Knot…and More

By | Experience | 5 Comments

Recently I had a four day adventure with Ankylosing Spondylitis. I didn’t know at the time that it was part of my AS adventure, but by the 4th and final day I realized the huge role it played. Let me warn you ahead of time that for some, this story may seem a little strange or funny. You may think that it’s something not worth getting upset about. If you have AS, you know any extra loss of control can set you on an emotional roller coaster, so please bare with me. It started with me unpacking things in the bedroom of my new home. I am so excited about our first home that I’m almost too eager to get everything unpacked and organized.

I was unpacking my jewelery box and found that all of my necklaces were tangled so of course, me being me, I had to fix this instantly. I wanted all of them separate so they would lay nicely in my new jewelery drawer. I had a history of getting them tangled and almost enjoyed the challenge of getting them separated (strange, I know). On this day, for the first time, it wasn’t easy. In fact, it was almost impossible. On day 1 I struggled for almost 4 hours while getting 2 of the 6 loose and put them away neatly in the drawer. Day 2 came and my hands were so sore from picking away at the necklaces that it was quite the challenge. Were the necklaces winning the battle? This was not acceptable. On day 3 it now became everybody’s fault in my home except for mine. In my exhausted mind, I was having trouble because the kids kept interrupting me and my husband wasn’t offering to help. Now in reality my kids were being kids, they wanted a snack, or asked normal questions like permission to go outside and play. My husband, knowing my stubborn personality knew not to ask me if I needed help because I would most likely get mad and ask him why he thinks I am helpless and can’t do simple tasks. My mind was tangled at this point. The three of them were in a no-win situation…and it seemed so was I. This day brought tears of the frightful feeling of losing control. I had tears from the loss of my temper, tears because I knew why I was, and shouldn’t, be acting so insane, and tears of pain, but I just couldn’t control my frustration. I NEEDED CONTROL even if it was just over untangling a few necklaces. At about 2am I decided to step away and try again in the morning. After a normal sleepless night, this time obsessing over how to get the necklaces loose, I woke the next morning in extreme pain. My neck could barely move, my hands were raw and my back felt as if I got in a full out brawl. I kind of did, but I believe it was more of a mental fight. Day 4 was going to be the day. I was ready to win. I felt like I was in the last lap of a race, tripped, but got right back up and kept moving. I needed a fresh perspective, strength and confidence that I could overcome this challenge. Instantly I was able to get more loose and I was down to the last 2 necklaces. I was in the home stretch. I told my husband I would give it a few more tries and if I was still unsuccessful I would allow him to step in. I was ready to ask for help. The pain once again convinced me that it would be okay to ask. The time came and went and those 2 stubborn necklaces were still combined. My husband, as usual, was my knight in shining armor. He helped me win.

I’ve always been a woman who likes to control every situation, AS is teaching me otherwise. I’m willing to admit that sometimes help is necessary. I may not like it, but it’s also something that is a part of my life now. It doesn’t mean I am any less than another person, it just means that I have to learn limitations. It might sound crazy that I got this much out of a simple 4 day adventure to untangle necklaces, but it is a fact. I have a chronic disease, with no cure, that will give me good and bad days of health due to something I cannot control. Having AS is a constant learning and teaching process. It is also an acceptance process. I may be tangled some days, but give me a few hours or days, and I will once again be gently organized and somewhat free from the knots of pain.

 

Sunset girl

Why Not Ankylosing Spondylitis

By | Experience | 4 Comments

If I counted the number of times I said the words “why not” per week it would be astonishing. Ankylosing Spondylitis is not necessarily the original reason I began to use these two magical words, but I have found it has increased its place in my vocabulary. When you are a child these words are a daily occurrence used toward your parents, teachers and whomever challenges your wants and needs.  As an adult, you find you also use these, but in a way that you are almost reasoning with not only the person on the other end of the conversation, but also with yourself. There are many ways these two sparkling words can be spoken. In many different tones and situations. Here are a few examples I like in every day usage.

  1. Why not! Meaning – I don’t understand why you are telling me this. I don’t like your answer.
  2. Why not? Meaning – I already messed up my diet. Sure I’ll have a piece of cake. I’ll hit the gym tomorrow.
  3. Why not? Meaning – Bad luck runs in cycles, so of course this is happening.
  4. Why not? Meaning – I have an open schedule, I would love to travel with you.
  5. Why not? Meaning – Although it sounds risky, I’m willing to give it a try.

Now, let’s look at the list when it comes to AS. The meanings are a little different. These words reiterate the extra thought AS sufferers and many others with chronic illnesses have to put into their daily lives. We find ourselves answering the question before we even ask it. Reminding ourselves how these two small words will have such an impact after they are said. Our simple words will turn our day, and/or days ahead, good or bad almost instantly.

  1. Why not! Meaning – I don’t like what you are saying Stop trying to take everything away from me! I want control of my life!
  2. Why not? Meaning – I’m in horrible pain. I could go ahead and eat that piece of cake since the damage is done for probably the next few days. What’s another day?
  3. Why not? Meaning – I have a million things to do, I’m in extreme pain, and have no more energy left. Let’s add to it. I might as well try since tomorrow I may be bed ridden.
  4. Why not? Meaning – I’m having a good day, and I don’t have any treatments scheduled for a few days. I would love to travel with you.
  5. Why not? Meaning – Although it sounds risky, I am at the end of my rope. I’ll try anything to ease the pain. I want to be able to enjoy daily life to the fullest again.

It really is amazing to me the impact these two, plain every day, words can display. We must remember to never stop questioning. Whether it be good or bad. I often stress the importance of us being our biggest advocates. I don’t mean only to the doctors. I do also mean to ourselves. We know what is best for us. Our answers to the glorious words “why not” is in the end, our decision. We must make the best one for us. Why not?

Doctor visit

The Doctor Trail

By | Experience | 3 Comments

As I was going over my calendar for the month, I realized the number of doctors’ appointments scheduled. All are specialists that either I need to see as a result of, or a preventative due to, my Ankylosing Spondylitis. After catching my breathe from adding up the various dollars in co-pays and lab bills ahead, I began to think about how many doctors it took before my official diagnosis of AS. I painfully wonder if they could of  just found that missing piece one day earlier could things have been different? Maybe not, but unfortunately I will always have that “what if” in the back of my mind.

I decided to make a list. Either my slight obsessive compulsive trait or just the fact that I’m more of a visual person, made me feel compelled to finally put it down on paper. I was taken back, if not amazed, that the list was so long. I had a moment of frustration. Why had nobody on this list ever thought of sending me to a Rheumy? Why were so few educated on Ankylosing Spondylitis? A lot of the healthcare professionals on the list were doctors I had seen, been sent away, and then sent back to again for another consultation. I was passed around like a deck of cards for years to only end up with a losing hand until now.

  1. Primary Care Physician
  2. Neurologist
  3. Urologist
  4. Gastroenterologist
  5. Cardiologist
  6. Dermatologist
  7. Psychologist
  8. Psychiatrist
  9. Nutritionist
  10. Physical Therapist
  11. Osteopath
  12. Oncologist/Hematologist
  13. Rheumatologist

After I finished, I realized that My Rheumy was “lucky 13”. I admit, I did laugh at the coincidence. Sometimes I feel the only way to keep from screaming is just to laugh. I look back at how many of these doctors sent me away with either the “you’re losing it” theory or just an honest, “we don’t know, we can’t help you” result. After reviewing my list some more and wondering why nobody caught it earlier, I began to feel a sense of gratitude for my diagnosis. My Rheumy saved me in more ways than he may ever realize. He gave me the confidence to become my biggest advocate. I had known something was wrong and refused to give up until I got an answer. A person can only mentally handle so many “wrong” answers and I was beginning to question myself until I met with him. It really does take a lot of wrong answers to find the right one.

I’m  even more aware now how important it is to spread awareness for Ankylosing Spondylitis. If more people were educated on the signs and symptoms of AS I may have saved myself and others years of frustration. With all of us getting the word out, we may be able to help others receive a diagnosis earlier. Together we can help set things straight!

Smile

The Many Expressions of Ankylosing Spondylitis

By | Experience, Support | 6 Comments

I have been told for as long as I can remember that I give my thoughts and feelings away with the expressions on my face. I think I’m fooling someone with a forced smile, giggle or silence portrayed. After meeting many others with Ankylosing Spondylitis I have learned I am not alone in my “smiles”. We often hope that if we put on a front of sorts, people will treat us normal or judge us less. I’m here to say this is so untrue. I recently was at the store and was having hip and neck trouble that day. I was moving a little slower than normal. I was hearing the “hurry up” comments and sighs but even with my never ending strength I just had to accept faster movements were not in the plans that day.

AS’ers, I question if our smiles of strength are the right thing to do? An emotional breakdown can happen for me once in a while. I try to wait until I’m alone, without family or friends around so they will not see the extreme pain I have inside and out. I’m worried enough, so why put the extra pressure on them. I know how wonderful it is to have other AS’ers to talk to, but sometimes I just wish the rest of the world understood how real our pain can be some days.

You and I both know our pain is real, but if the average person looks at me I look “normal”. I’m young, still mobile and living your average suburban lifestyle. I go shopping, care for my house, carpool and give the love needed for my children no matter how much I may pay for it later. You would never know that I have something that constantly stops me in my tracks. The extra fog and nausea of pain medicine, muscle relaxers and the fun injection days that really can knock us down just add to the point of having no other choice but to never give up hope. We also have the scary list of side-effects and possible future additional health issues that come up throughout our AS adventure such as, kidney, heart, lung, fusion and cancer issues. You want to scream out as to how much more we can be tested with our strength, optimism and faith.

So what are my expressions really saying? To me, they express a hope for a better tomorrow. Not only for me, but for all that suffer, whether it be from Ankylosing Spondylitis or another disease that can control or “hide” our real pain. Below is my list of what I feel is the “mastered” expressions I use on the bad days. Don’t get me wrong I do have genuine smiles, but I can use the same ones just to shield, not only loved ones, but myself from the pain I cannot control.

  1. A Smile – If you can’t see me cringing in pain, you won’t know the pain is there
  2. Biting the inside of my cheek – I do this instead of yelling out the frustrations
  3. Pressing my bottom lip – If my mouth is forced shut no sounds of desperation are heard
  4. Attempts to sit straight – Hey, I can look like everyone else if I can stand the stabbing pains for a bit
  5. Sarcasm – It can help hide anything, right?
  6. A look of thought – If you think I am pondering something you won’t think I am really wondering how long this specific flare will last or what I can do to relieve it
  7. Laughs – Shielding pain with laughter is the best medicine
  8. Silence – This says it all

I am lucky to have a strong support system through my husband and some of my friends and family. I know that as long as I continue to “smile” and stay optimistic the future will be bright. I may never find complete relief from pain and may have many more obstacles ahead with Ankylosing Spondylitis, but hope should never be put off until tomorrow. We must keep it alive daily.

Typing a letter

Meloni’s Ankylosing Spondylitis Story

By | Experience | 5 Comments

United Voices for Ankylosing Spondylitis was created for us to all share our stories and we are honored to have Meloni be our first “Guest blogger” and share her experience with AS. Thank you so much Meloni for your courage to help spread awareness through your story.

Ankylosing Spondylitis Mom

I’m a mother of 2 beautiful daughters and I have a WONDERFUL husband and BF of 20+ years. Ankylosing spondylitis (AS) was not what I wanted to join my family. About 3/4 years ago I started having terrible pain in my lower back and my hands and feet were so swollen and hurt so much. I went to my PCP and she did TONS of blood work trying to find out the cause of all the swelling and pain. I was checked for everything from lupus to rocky mountain spotted fever! I was referred to a rheumatologist (rheumy) who did an exam, looked over my PCP’s records/tests/x-rays and he came to the conclusion that I had fibromyalgia. He started me on “drugs” and I had very negative reactions to every drug he would try and the pain and swelling was only getting worse. All the while my husband is saying you don’t have fibro. You need to find another doctor. A scheduled return to my PCP and she asks how I’m doing-etc and I tell her that rheumy’s diagnoses was fibro, meds aren’t working….all the while she’s looking over all HER tests again and says..”YOU HAVE ANKYLOSING SPONDYLITIS”…you are HLA-B27 positive…I have ankle what??? He missed it! Why didn’t my rheumy see this???

I’m referred to a new rheumy. She immediately diagnoses my AS and starts treatment–more tests, more x-rays, bone scan. Can I say my first visit to her I broke down in tears—finally I know why I feel this way, and then the tears of WHAT?….what happens??? Me? NO! I don’t want to have this. She had printed only about 20 pages of information for me and it included a picture…a picture of a man and his AS progression-the curved bamboo spine. I cried all the way home and talked with Lang. Showed him the picture–“I don’t want to look like that”…he says, “well don’t wear those shorts”. Can I just say how much I LOVE this man of mine!

I do worry about what my future holds, but a good thing is that I know who holds it! With my husband and God I can get through this terrible disease. So for now…..I give myself a shot in the stomach of methotrexate every Wednesday evening-this is a chemo drug and yes, I do have side-effects (nausea and hair thinning). On Thursday I give myself a shot in the leg of Enbrel. On Fridays or Sundays (depending) I give myself a shot of B12 (or I get someone to help with this one). I take folic acid everyday because I’m taking methotrexate. I also take pain meds when needed. On Friday I take a very HIGH dose of vitamin D (found that autoimmune patients are usually low-I was VERY low). I also take one other drug (for inflammation) that some are saying I’m not supposed to take with the methotrexate because it does increase the risks of liver and kidney failure (now there’s something you want to hear), but my doctor says that’s not true.

I live with AS and most folks don’t realize that I have this terrible disease. Or if they do, they don’t know what it is and they certainly don’t know that just getting out of bed is a “job” in itself. I do “things” that I know I shouldn’t because I know the next day is going to be very painful. So why do these “things” you ask…because for the most part, it’s just “life”. It’s living! I refuse to stop “living”.

I ask you to learn about AS. To realize that yes, I do have a handicap permit and I do look fine, but there are some days that the walk is too far so don’t stare and think shame on me for using it. I ask that when you look at someone who looks “normal” to understand that maybe they aren’t. I ask that when you hug me, hug me gently–and NEVER pat my back. If I don’t shake your hand, it’s not an unfriendly gesture, it’s just usually they are hurting and you will squeeze too tight, or another reason, I’m taking Enbrel which compromises my immune system and I really don’t need your germs.

My saddest day–learning my youngest is a carrier. My prayer is that her AS never “turns on”. That it NEVER invades her body. I pray that God will protect her and guard her against this evil disease. At that moment you feel as if you’ve failed as a parent–how could I give such a terrible thing to my child, then I realize that she’s not mine but God’s and I hand her to Him for protection.

What does my future hold…I don’t know, but I do know who holds it! I can do all things through Christ who gives me strength.

Check out more of Meloni’s blogs

Meloni’s posts hit home for me. So many of her posts seem to be a page out of my own experiences. It is always comforting to know we are never alone in our fight to live with AS.

http://asmom-meloni.blogspot.com/

Friends at beach

The Disease That Keeps on Giving

By | Experience, General | No Comments

It is said that people come into your life for a reason, and for me, that is so true.  I have realized that having Ankylosing Spondylitis has brought me across some of the most amazing people.  The many AS patients I have met in the infusion room and online are a huge comfort.  They help me to know I am never alone in my fight.  Although with the multiple frustrations and lonely days feeling I have to constantly battle this disease I am still comforted with each new person I meet that can and/or will attempt to understand my pain.  Since my original diagnosis with AS, I have been sent to several other types of doctors to rule out different illnesses that have sprung up throughout the process of my treatments of AS.  One that sticks out to me is my visits to the Oncology/Hematology office.

My New Friends

I think the first visit was the hardest.  I felt almost ashamed of my pain and exhaustion or even being at a point of hopelessness.  Vividly remembering my days before my first visit being so silently scared and angry that I may have to fight for something else and wondering why me?  Then I walked in, with a full head of hair and not fully dependent on another.  I didn’t need someone to sit next to me in a chair holding my hand to convince me I could be strong enough.  I already knew this, I knew I could fight without wondering if tomorrow would come for me.  As I looked at these worried faces, bruised and weak I wished I could make it better for them, I wished I could give them some of my strength that I thought I didn’t have before I opened that door.  I wanted to shed tears for them but knew this was a place of hope for them.  Maybe today they would be in remission or find a cure.  I hoped for them too.

As I sat filling out paperwork I met a man who openly began to share his story with me.  He was in his 70’s, fragile, sitting in a wheelchair but with the spunk of someone younger than myself.  He told me of his diagnosis and his experiences.  Instead of talking about the negative he only spoke positive.  He talked of his family and his hobbies.  How he found more time to appreciate his surroundings.  As he talked of his life, a young mother, with thinning hair chimed in as she attempted to chase her toddler through the waiting area.  She shared how she she was diagnosed when her child was a few months old and how she just prays daily for a few more minutes with her child.  Not a few days, but minutes.  Not once did either of them look for some sort of pity.  As I listened to their stories I was left speechless.  Those who know me, know I am hardly ever without a word to say.  I could not say I understood because I didn’t know what it was like to wonder if today was my last.

I walked back to the area where patients were getting chemo.  I watched as they were getting frustrated from the nausea or just plain old exhausted from the energy it had stolen.  As I got my blood drawn and the nurse cheerfully asked how I was feeling I gave my answer with guilt.  I was feeling well.  I met the doctor and immediately he told me I was in the clear for right now.  It was a huge weight lifted off my shoulders.  Round one went to me.  I again was feeling ashamed of my self-pity that I had earlier in the day.  As I walked out I passed both the older man and the young mother.  We said our goodbyes and wished each other well.  Little did they realize the impact that they had on me that day.

I Can Do Something

I realized that there are definitely people out there with worse health problems but that also it was okay to feel a little shafted with the AS diagnosis.  My AS was blessed upon me to help me appreciate what I do have in life, to hold it, and to cherish every “good” moment.  I need to remember when I want to give up why I am holding on so hard in the first place.  I look in my kid’s and husband’s eyes and know there is a reason to keep on staying strong.  I’m allowed to feel upset but have to also know that there is hope.  I may not have a cure for my disease but that if I could not win this one battle I could still do something to help.  If my words could help just one person, like the words of my 2 new friends I met that day, and show that having courage and hope can mean so much, I will have succeeded.  People with AS do not “complain”, we struggle with the question “why” this disease is so uncontrollable.  We want others to not “pity” us but to “understand” us.  It is frustrating when we cannot explain our pain because it is not a visual illness.  Because of this, we can hurt as much emotionally as we do physically.  I will hold tight to my stubborn ways and never allow myself to give up this fight.

Share With Me

AS’ers:  Has AS “helped” you in any way?  Has meeting other AS’ers helped you to find comfort in knowing you are not alone in this disease? How do you help spread awareness?

Support System:  How have you tried to help comfort your AS loved one?  What works?  What doesn’t?  How have you helped spread awareness?