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Amanda

Food choices

The Diet of an Ankylosing Spondylitis Champion

By | Diet | 25 Comments

The diagnosis of Ankylosing Spondylitis presents many questions. The most common seems to be what we can do to help relieve some pain. As I am sure many fellow AS’ers also do, I head to the web to see what I can research on this confusing disease. There is some mixed feelings on whether the diet you have plays a role in the encouragement of flares. I can’t speak for all AS’ers but, I know for me, changing my diet definitely effects my pain.

Carbs Controversy

One of the first things my doctor suggested to me as far as a lifestyle change with AS was to cut down on my carbohydrates. Me, being a huge pasta and potato person found this one tremendous challenge. I did follow the doctor’s orders and cut down and to my sad surprise, I felt a difference. My doctor said carbs can cause inflammation. I still “sneak” some carbs but I do pay for it later. In fact, I just over-carbed last week and can I just say the past few days are reminding me why I tried to cut them out! Some professionals say that the no-carbohydrate diet doesn’t work but that it’s this, that, or the other food that plays a role in the inflammation. I will stick with what I know works for me, and that unfortunately means less Italian for this woman.

Can We Eat Anything?

AS’ers we are told to reintroduce ourselves to food. We are being stripped of our energy, mobility, mental well-being and now our food…what else will AS try to take? It is recommended to eat more fruit, vegetables, meat, fish and dairy; and less bread, rice, pasta, cakes, chips and potatoes. It is also clear that fried, fatty, and sugary foods also need to be removed from your ankylosing spondylitis diet. This will help reduce your body’s unhealthy immune response. So these are all reasonable but what this list leaves out is that even the “allowed” foods on the list are not always good. Dairy for example effects many AS’ers because of GI problems many of us have associated with our AS. I am a huge fan of fruits and veggies but even then our list gets cut down some more since some of those can hurt us. So although I am aware that what professionals may mean is that we need, like in all diets, to eat the “bad” AS foods in moderation, I selfishly admit that this is a HUGE problem for me. I miss my pasta, potato and green pepper life and wish that things could be easier.

Share With Me

Have you modified your diet? What works? What doesn’t?

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/

Winter weather

Weather vs. Ankylosing Spondylitis

By | Featured, General | 13 Comments

Now that Fall has arrived I sit and wonder what the cooler weather will bring to my adventure with Ankylosing Spondylitis. I’m not sure how I exactly blocked out last year’s colder season, but realize it is here to stay, at least for a few months. When it comes to a person with AS I have learned that it all depends on the individual patient on weather preference. Some love the warmth of the Summer, some the brisk chill of the Winter months and some of us just want a split of the two. You know, the “perfect” weather.

Summer Sighs

As I bundle up and head to the bus stop for school with my kids I’m already hoping for the warmer days. I then think I must have forgotten those days where the heat left me almost immobile. Those days just recently slowed down since September just left us. With AS I look for every opportunity for pain relief and would often head to the pool to cool off in hopes that maybe the pain would be a little less. I would then get out of the pool and that Georgia sun is once again scorching down on me and instantly swells my body all over again.  Air conditioning is definitely a best friend of mine in the Summer time. I was always a sun bunny in the past but, unfortunately, I have had to learn my limits now.

Winter Woes

The cold nights keep me snuggled up looking for any form of relief from the stiffening of my joints. When Winter comes, for me, it is pretty impossible. The winds can be brutal here in the Winter which makes our cold weather slap me around a bit.  I never know if it will effect my hands, feet or back that particular day but unfortunately I wake up knowing something is going to be sore daily in those few months. I have accepted Mother Nature’s cruel weather tricks, but really wish there was something more than a heating pad and meds I could use to find some relief during the frigid weather.

70 and Sunny

For me, there is NOTHING like a Fall day. Not to hot, not to cold, just perfect.  The sun shining yet not with radiating an uncomfortable heat or cold.  A stroll around my neighborhood with the cool wind blowing gently through my hair.  The air massaging my skin as to say, Mother Nature is not a complete witch, she does want you to enjoy some type of weather. I seem to feel more energized and just happier all around. I guess it comes back to when you feel well physically, the emotional drain picks itself back up to help you push on.

Share With Me

AS’ers – Which do you prefer hot or cold? What helps you through those uncomfortable weather days?

Support System – Can you notice a change in your AS loved one when the weather changes, either physically or emotionally?

Workout woman

Exercise and Ankylosing Spondylitis

By | Exercise | 16 Comments

You get the diagnosis and then you get “the list”.  The list of options of what works, what doesn’t, and what might help you live pain-free or at least with a little relief. You hear the word exercise. I know my first thought with that was ya right! Try and exercise when you can barely stand for longer than a minute without feeling pain. After much thought on this “advice”, I figured I might as well give it a try. I was at the point where I would try anything at least once to try and relieve some pain.

Gym Time

I walk into my local gym for a little cardio and some arm and leg sculpting.  Every intention is to conquer the world today.  I jump onto the treadmill and decide I will push myself a little.  I was feeling good that day,  I could do it. To my, somewhat, surprise I did great.  I got off the treadmill and felt a little better. Knowing it may be short lived I headed over to the weights. I was a workout machine!

Superman Wasn’t Even This Brave

I finished my workout, went home and planned my classes for the next week. I was doing Yoga, pilates and core classes the rest of the week, while still fitting in straight cardio and some weights. Great plan! I was ready, I had energy I forgot existed! The next day came and I had a great Yoga class that was slow moving and meant for people with sore joints. It was extremely helpful with all the gentle stretches. The next few days and workouts came quickly and I was on fire. Then it was time for the pilates class. I know many of us have the SI joint pain and I am no exception. Little did I realize that the day I chose to go we were focusing on the hips, butt and lower back area. OUCH! I pushed through the class and well, let’s just say, I am quickly learning how often and how hard I can workout weekly!  I did indeed push myself, just maybe a little too hard.

The Aftermath of Ambitious Plans

Although I was a little sore that evening, I still had this amazing energy that I truly missed and was again ready to take on another class the following day. I was a workout rookie but I felt like I was turning a new leaf when it came to my AS. I found the miracle that was giving me pain relief. I closed my eyes and then my alarm sounded bright and early the following morning. I could barely lift my body out of bed. I was hurting BAD! I wasn’t sure if it was from just one class or from the combination of a straight 5 day workout. Which by the way I was told to take breaks in between days but I never listened before so why would I start? I was going to feel better fast!

My Workout Conclusion

Despite my first AS improving exercise experience ending in a bit of disappointment, I truly do believe it helped and hopefully will continue. I keep up on cardio and Yoga but have found that weights are a little harder for me than I had hoped. My hands can barely handle gripping the 3 pound weights for too long at a time.  I have learned that on my harder days that it is okay to skip the gym and just try to get in a few minutes of gentle stretching at home.  I also attempt pilates class still but have found if I need to step out early that it is okay to listen to my body when it cannot handle any more pressure. I’m no Olivia Newton John but I do try to make exercise a part of my daily routine. It seems to give me a little extra boost and as all AS patients know, every little bit of extra energy we can get is cherished.

Share With Me

AS patients:  Do you exercise regularly? If so, what works best for you? How are the after-effects of a weekly workout for you?

Support System: Are you an AS workout buddy? Do you notice a difference in your loved one when they got a workout in? Positive or Negative?

Pain pills

Side Effects of Relief

By | Treatments | 3 Comments

It’s treatment day. You’re ready for some relief even if it is just for a day or two. As you prepare yourself you remember that in a few hours you will have to first experience some uncomfortable side effects, but try to remember it will be worth it when you can walk without feeling like you just got beat up in a bar room brawl due to your Ankylosing Spondylitis symptoms.

The List

Whether you’re in an infusion room or do an injection at home I now know the side effects don’t discriminate on location. The list can include; serious infections, compromised immune system, headache, blood disorders, nervous system disorders, allergic reactions, Lupus-like syndrome, Psoriasis, weight gain, weight loss, rash, abdominal pain, nausea, injection site pain, diarrhea, bleeding in the gastrointestinal tract, mouth ulcers, hair loss, bone marrow suppression, liver problems, risk of cancer, kidney failure or even heart failure. Yet even with this long list most AS patients come to a point to try anything to relieve the pain. Sure there are NSAIDs, DMARDs and “tips” on how to relieve some of the pain without having to start an advanced drug and/or TNF-a (tumor necrosis factor alpha) blockers but unfortunately for some, those aren’t enough.

We Make The Choice

I did weigh the pros and cons but knew if I were going to fight this head on I had to do whatever was in my power to try and move forward. We didn’t “choose” to have AS but we sure can “choose” to fight it. We may not be able to control the outcome but knowing every effort is given to at least try is a success in itself. We may have a disease that leaves us powerless in so many ways but treatment is ours to rule.

A Plethora To Get It Right

It may take 1, 2 or even 3 to find some relief. For some AS’ers, no drugs will ever work but again, we get to the point where we at least want to try. I tried Remicade first and it ended up causing more bad then good for me. I now have a blood disorder but it is monitored and I can keep moving forward. I’ve had my first Humira injection and quickly learned I still have my same side effects. Every AS patient has a different list of side effects. Mine last for 2-4 days. I get a killer headache, nausea, stomach issues, a rash and my hair has thinned a lot. They seem like the longest days, but I hope that relief will be the end result so I try to keep positive although during the moment it can be really hard. I did experience some relief between my 5th and 6th Remicade infusions for about a week each time but my 7th and 8th were of no success and then the blood disorder came about so it was time to move on. I’m optimistic that Humira will work eventually. I figure at this point I have no reason not to believe. I have only had one treatment with it so I will give it time. I think one of the things that keep me going is the hope that I will not necessarily be pain-free, but one day be relieved of some.

Share With Me

AS’ers:  Do you have side effects after treatment? What helps to relieve some of your side effects?

Support System:  How do you deal with your loved one’s side effects?

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?

Infusion

A Treatment of Hope

By | Treatments | 2 Comments

For some patients, the multiple medications offered for Ankylosing Spondylitis can be a blessing, but for some, it is an ongoing nightmare.  As a patient all you really want is relief.  Relief mainly from the pain.  The pain physically and emotionally.  You get diagnosed with a disease that can try to control you.  You hear it has no cure, that it will only get worse.  The frustration level is at its peak and then your Rheumy tells you he has something that will ease some of the pain and possibly even put it in remission.  There is the hope that you have been searching for to put your life back in order.  A ray of sunshine…or is it?

Remicade, the Path I Chose

My doctor chose Remicade for me to try first.  He explained the pros and cons. He said it has had amazing results for a lot of his patients.  I would sit in a chair for 2-3 hours hooked to an I.V. getting an infusion.  It would target specific proteins in the body’s immune system to help control the development of inflammation, significantly reducing painful symptoms.  In diseases like ankylosing spondylitis, TNFα-neutralizing medication can cause your immune system to attack healthy tissues in your body and cause inflammation and damage.  If these diseases are untreated, it can cause permanent damage to the body’s bones, cartilage, and tissue.  Remicade can lower the ability of your immune system to fight infections. Serious infections have happened in patients receiving Remicade. These infections include tuberculosis (TB) and infections caused by viruses, fungi or bacteria that have spread throughout the body.  We can’t leave out fever, cough, fatigue, nausea, warm, red or painful skin, cancer, or even heart failure.  Seriously?

So I don’t know about you fellow AS’ers but I seem to be prone to the oddest illnesses.  I don’t get your standard colds, I get pneumonia.  I don’t get low iron, I get Idiopathic thrombocytopenic purpura (ITP), not a pulled muscle in the back, but AS.  Because of my odd way with illnesses I was a little worried that I could have the bad side effects easily but still decided I was at the point that I just needed relief from the pain.  Results vary by person of course, but for me it took until the 5th infusion to notice relief.  I felt like the “old me” again!  I was finally able to get back to my “normal” life.  Then, after about 2 weeks, I was back to where I was before Remicade.  The pain was awful.  I tried to stay positive.  I was so thankful for even the few short weeks of relief I did experience knowing there are some who do not even get a few hours.

Antibodies, the Devil of Remicade

As I would go for my blood work every few weeks we noticed that my counts were becoming more and more of a problem.  I was so upset.  He would tell me what could be going on and they were of course the scariest things possible.  I was not ready to fight any other battles.  I hadn’t even been able to defeat AS yet, how could I take on more?  He sent me to an Oncologist/Hematologist and a Cardiologist.  It was the scariest few months I had ever had to experience.  It was kind of funny because both doctors found it humorous that I sat in their offices and told THEM that I knew I couldn’t and didn’t have a cancer or a heart issue.  I literally told them I didn’t have “time” to add them to my medical history.  Thankfully, I was right.  I did have a small leakage in the heart and was diagnosed with a blood disorder, but they were both something that just needed to be  monitored.  I received a get out of jail free card this time around.

I went for my 6th, 7th and 8th infusion and finally was told I would need to stop Remicade immediately.  Antibodies were on the attack.  They were attacking my organs full force.  As I was ready to break down and tears welled in my eyes he quickly assured me we could try something else.  A sigh of relief was let out.  There was still hope.  I could get pain relief.  As far as my organs were concerned, his thoughts were that with stopping the Remicade the organs would mend themselves.  I just need to continue being monitored.

They say that when one door closes another one opens…perfect for my TNF experience.  Many AS patients go through several medicines before they find one that works.  I am not the only one that had to experience the bad side before I get to feel relief.  I will be starting Humira as soon as insurance approves it and am extremely optimistic that this will be the one that works for me!

Share With Me

AS patients – What medicines have you tried?  Did you have a good experience, bad or both?

Support System – If your loved one has started a medicine to relieve their pain, what has your experience been after treatment day with them?

Boxing

Staying Positive When You’re Getting Your ASs Kicked

By | Support | 15 Comments

A positive frame of mind can get you through anything right? Even during a flare?  Maybe. But, boy is it hard to try to keep smiling when you have gone on 2 hours of sleep and can barely sit still because every position stiffens each joint within seconds.  I like to try and give myself a little pep talk daily.  I have fought many different health battles throughout my life, not just AS, and have always somewhat defeated my obstacle.  I do know eventually I will feel some relief, I have accepted that it will never completely go away but I refuse to let it get the best of me.  I must say the challenges do keep me on my toes.  It seems when I let my guard down that is usually when something sneaks up on me.  When I was diagnosed with AS, I had already progressed but figured this was something I could kick.  I knew nothing about AS at that time and figured it was just a few aches and pains.  I had lived with health problems for so long that  my high tolerance of pain could easily get me through this.  It was going to be something else I could take medicine for and the pain would be gone.  I did not account for the medicine not working, flares and the unfortunate side-effects that come along with AS treatments.

Quit Complaining

There have been so many times that I have felt that this is what friends and family have wanted to say to me.  AS’ers you know the “look” you get.  The rolling of the eyes, the scrunch of the nose or raised eyebrow.  The look that says you don’t look sick so stop complaining.  I try my hardest not to “complain” but it has become a challenge all on its own.  You want to be able to share with your support system that you need them yet not be a burden or the outcast.  You begin to avoid others just so you don’t slip and say an extra ouch or mention you may need a little rest.  Without your loved ones you may literally not be able to make it through your day.  How will you walk up or down the stairs, throw in laundry, open the juice, or even be able to get your shirt buttoned?  Your hands, neck, back and knees are in so much pain that you feel helpless.  I think this is one of my biggest frustrations.  I have always been so independent, even with my past medical history, and now with AS, I just have to accept that now I can’t do this on my own.  For those who know me well, know “can’t” is not a word I like to say.  I am still learning that can’t and limits are two different things.  I am learning my limits daily and hope to eventually accept that I do have some.

Walk A Mile In My Shoes

Walk a mile…with AS…yeah right!  You wouldn’t wish your pain on anyone.  It is hard to explain what you feel.  AS’ers we all know exactly how it feels but what I want is for our pain to be accepted.  You finally get an explanation from a doctor and feel welcomed in the AS community that your pain is real, you then go into the “real world” and you are right back to where you were before your diagnosis.  Lost, alone and feeling out of control.  Thankfully, I can’t say this happened to me by all of my family and friends.  I have a few loved ones that have become my biggest supporters.  They are there for me, if for nothing else, but to let me vent and then not judge or tell me to get over it.  They accept that I have Ankylosing Spondylitis and want to learn whatever possible to help me through this journey.  You guys know who you are and I love you for never making me beg or feel like a burden.  You don’t expect a medal for loving and supporting me.  Me, with AS, not me, the person who can always be positive.  You expect nothing in return for your love and support and I can’t stress how lucky I am for having you in my life.  To our family and friends who brush us off let me just say, we will gladly carry this pain for us both so that you will never have to experience walking a mile in our shoes.  I can’t express enough the hurt that I feel when I find out the whispers that have gone on behind my back.  I always end up hearing about them and at this point should not be surprised, but to be honest, it still hurts.  Although you may not support us we will still continue pushing forward.  Our bones and body may be weak, but our souls are not.

Smiling Doesn’t Always Work

AS patients are known to try and “hide” the pain.  We add a little smile, take a few extra deep breaths and add a little more make-up just to try and pretend we feel “normal”.  What about the week before our next treatment when the TNF’s have worn off or you are in the midst of a flare?  What about when the frustration has once again set in because you get your latest labs back and now you are told you have to worry about whether new complications have arrived?  You want to stay happy and smile.  You ask yourself how much more can you possibly take; trying to remember you are only given what you can handle.  I look at my loving husband and beautiful children and remember what keeps me going.  So yes, smiling doesn’t always work but in the end, I will try my hardest to keep positive.  I know there is no cure but that also doesn’t mean I just give up.  I could throw my hands up and say forget it and wilt away.  I am not that person.  I will not allow something to tell me how to live.  It may not seem like it right now but with the proper attitude, a strong support system, and medical care we can all smile again.

Share With Me

AS patients – What helps you stay positive?  Any advice to fellow AS’ers on how to get through those down times?

Support System – Do you have any little things you do to help your loved one with AS keep positive during their darkest times?  Does your loved one seem to “hide” it?  Do you honestly feel burdened at times?

Bed and pillows

Are You a Morning or Night Person?

By | Experience | 7 Comments

Is this really even a fair question? This question can haunt a person with AS.  You wake in the morning and take almost 20 minutes to get out of  bed because your body has decided it does not want to cooperate with you today.  Let’s not even mention the fact that you probably have only gotten about 1 hour of restful sleep since you are constantly waking throughout the night in pain.  Night time comes around and you’re tired, you want to sleep, but you cannot.  The hustle and bustle of the day has exhausted you and along with that add on a couple cute swellings, bruises, aches and pains to top off the evening.  The nausea and headache from your most recent treatment has you so uncomfortable that the thought of even trying to get settled for the night is way out of reach.  So how does someone with AS really answer this question?  Well I guess it depends on the moment.

I want to be a morning person

I can’t remember what it was like to wake up in the morning and pop out of bed.  Did I ever pop?  How I would love to open my eyes in the morning and not have the first thought in my head be something negative.  I am extremely thankful I woke up but would really be happy if I didn’t hurt.  I pray that the morning has brought me a pain-free day.  I am already grumpy and I haven’t even lifted my head yet from the pillow but can feel that my body wants to bring adventure for the day.  I like to use the word adventure a lot when it comes to my AS.  I think it adds a little something extra. A little pizazz to the pain. Lol.  I drink my coffee to wake up enough to get the kids off to school and of course grab a bite of something so I can take my meds without getting sick.  So now I want to go to the gym and get in some cardio to keep my lungs and heart nice and strong.  I also want to try to get in a pilates or yoga class to help with my reducing flexibility.  Now, I know in my mind if I do all of these things it will be great but I will also choose to not do anything for the rest of the day then.  Do I have any errands that must be done today?  Do the kids have any activities after school?  I must choose wisely.  So as I sit and think what will I accomplish for my day I start to wonder what it would be like to just do something in the morning without really having to worry about the consequences of the evening or next several days after due to, what would seem to be, a simple decision made for my day.  I can make myself so angry and frustrated once I start.  I get jealous of my husband’s “Mr. Morning” happy attitude.  He gets up with a smile and is off to work within an hour.  For me, I need to allow at least 2-3 hours to get ready.  I might have to wear my hair back that day because my hands are hurting so I can’t hold my straightener.  Make-up, as all ladies know, can be a project.  I have to add a little extra foundation to hide the newest bruises I got from just rolling over in the middle of the night.  I am at the point now that I get excited when my face does not have a bruise so I can go make-up free.  I know that even healthy people have “bad” mornings.  I know it is not just me but I would love to not have to plan my day around my “what ifs”.

Night time, is it really the right time?

So the exhaustion of the day has set in.  Time to relax…ha ha, that was funny fellow AS’ers wasn’t it?  I believe sarcasm makes everything better!  The throbbing feet, hands and spine are almost too much to bear. You look forward to sleep just because the pain is so bad that you know if you are at least asleep you won’t “feel” as bad but you also have yourself prepped for another night of tossing and turning.  You get invited to go out for drinks with friends but are so sore at this point that you have to cancel…again.  So now disappointed and once again frustrated you miss out on something fun.  To be able to put on my dancing shoes and head out for the night would of been amazing but again the choice came and I had to dissect what will happen if I choose to go.

I’ll take Happy Hours 4pm – 7pm

I’m not sure about others, but for me, I seem to have a little burst of energy around this time of day.  Not every day, but I have noticed when I do; it seems to be in this time frame.  It is kind of funny to me that it is during these specific hours as if I am on a “natural” intoxication.  The pain is a little less and the fatigue seems to take a little breather for me.  My husband probably likes it because his dinner is prepared and the kid’s homework is done so he doesn’t have to take care of picking up the slack for me.  He definitely chips in when needed though.  I think about my day thus far and I had already had a next to impossible morning and an extreme bout of fatigue during the early afternoon so I figure that a few hours of possible energy are an amazing blessing.  I know there are many AS patients out there that do not even get that little break per day.

Share with me

AS patients which do you prefer, morning, night or are you an HH fan like me?  Do you get a “break”? What does your routine consist of to help you get a few extra restful zzzz’s?  Any routines to help you get moving in the morning?

For our loved ones out there, how do you feel about our ever-reducing energy?  How much has it affected YOUR daily life?

Support beams

Support Systems Are More Important Than They Realize

By | Support | 4 Comments

After being diagnosed with AS I remember thinking in my car on what seemed to be the longest drive home ever, how do I explain this to my loved ones?  I have had health problems all my life but they were things that I COULD explain, not a disease that I knew nothing about.  How do I explain something that I don’t understand myself.  I have 2 small kids, how do I explain to them that mom’s bad days will be days that I need a break or maybe a little extra help from them?  I may not be able to take them to the park to run around, shopping at the mall or go on the green-way for a walk because even a 1/2 mile walk will knock me on my butt for days after.  How do I break down and accept that their real life super hero may not always be so super 100% of the time?  I felt so out of control!  As a person who has always needed to be in control of things, even down to little details, this was going to drive me insane! My doctor stressed how important it was to share the information with my support systems but I just couldn’t grasp that.  Why would I want to put any extra stress on my husband, kids, friends or family?  There are people out there fighting worse health problems than this, who am I to feel helpless? I could do this alone, or, so I thought.

It’s okay to break down

I did indeed tell them I was diagnosed with Ankylosing Spondylitis, I just didn’t let them know how bad it could get some days. Those who know me well, know if I want someone to know something, I will tell them, I just have to do it on my own time, in my own way, not when I necessarily “need” to. I needed to accept the changes in my life before I could share it with anyone else. I would walk into the doctor for my monthly check-up and just break down.  I felt like a basket case. It was the only place I thought I really could, as if I would be shunned from family and friends if I opened up.  I wasn’t good at expressing emotion.  Tears weren’t okay for me. I had always encouraged others to let out their feelings, but for me, personally, I wouldn’t allow it. Growing up with health problems I learned not to express the pain to protect my loved ones, but now being older I realize how much that was for a child and have learned from it. The doctor would tell me my break-downs were a normal stage and it was okay to cry, I just needed to find the courage to do it with my loved ones also.  I would need their support. He said a break-down now and then is good for a person, it shows character…that actually made me laugh for a moment.  He, learning my personality quickly, knew my sarcastic way of thinking and liked to throw in a few remarks here and there.

I am not made of steel

I had to accept I was not made of steel.  I had to be selfish and find support for me.  I needed help and finally accepted I could not face this alone. I was always annoyed by the people who complained about EVERYTHING, I didn’t want to be that person. Little did I realize I was not alone.  There was a select few I decided to share the “real” pain with.  They were people I knew would never judge me.  They would listen with the open ear I needed and wouldn’t tell me I was wrong or even (as petty as it sounds) go behind me to gossip of what a complainer I was being.  I know it sounds silly to think about people who will talk behind your back but at that time that was what was going on in my head, not wanting to be “that” person.  The one everyone avoided because they didn’t want to listen to their complaining.  I can pass on the medical description to my support system but how do I really explain it to them? I searched for a way to tell my loved ones what it felt like to have Ankylosing Spondylitis.  How do I tell them I am sick when I don’t actually “look” sick?  Unfortunately, people sometimes only believe what they can “see”.  It was actually recommended to me by one of the support groups I found online to share an article called the “Spoon Theory”, by Christine Miserandino.  The web link is http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf. It is about a woman that has Lupus and it was her way of explaining what she was going through to a friend.  What it actually “felt” like to be sick. Although I do not have Lupus it explained my days so well that I put it out there for my support system to read.  The explanation in her article was amazing for anyone who has an illness or disability.  It was as if she took a page of a day in my life and wrote it down for all to read.  It stressed how important our “spoons” are daily and how so many “healthy” people take them for granted. I could instantly tell the people in my life who thought I might be a little insane and the ones who genuinely wanted to be there for me.  I have a very good friend who said something to me when we were younger that has stuck with me. In times of obstacles you learn who your true loved ones are. I found this very relevant when I decided to share my “news”.  Was I over thinking their reactions?  Possibly?  I couldn’t shake the feeling though that some just didn’t “get it” and soon I just began to slowly distance myself from them for both of our sakes.  It wasn’t fair to them to have to “listen” to me and it was definitely not fair to me to not have the support I needed to face the newest challenge in my life.  I am human, we all have stress, but I didn’t need any extra stress if I was going to give 110% to this challenge.

The best help of all

Although I still have my days where I feel like a burden to my loved ones because I can’t do the little extra or I need to vent about the yucky feelings, I do know that I am very blessed to have people who are there for me.  Without them the bad days would be even harder to get through.  They don’t even realize the little things they do like just pouring me a glass of juice because I can’t twist the cap, a call/text/email just to say hello, or just showing that time was given to look up information on AS really gives me comfort.  As an AS patient, I wish I could really explain what a “lonely” disease this is to our loved ones. It’s frustrating and confusing.  All I can stress to our loved ones is we DO need your support. A helping hand, an open ear and heart, these things can make our day.

Share with me

Question time.  If you are an AS patient, what are some of the great things your support system can do/does for you?  What has worked?  What has not? Do you prefer to be alone?  I know some days, I must admit, just being left alone is the best “help” I can get. How did you explain Ankylosing Spondylitis to your loved ones?  What reactions did you get? What are your biggest frustrations? What are you most thankful for?

If you are support for a person with AS, what do you do to try to help? What has worked?  What has not? What questions do you have about Ankylosing Spondylitis? What kind of support would you like? How did you feel when you were told your loved one has AS?  What are your biggest frustrations? What are you most thankful for?

As you see, the questions are pretty much the same whether you are a fellow AS’er or their support system.  This is why spreading awareness is so crucial.  We have so many unanswered questions and together, if we get the word out there, we can help us live “with” AS, not “for” it!