That Really Is The Question

By | Treatments | 2 Comments

I’m not sure if Shakespeare knew the impact his words would have when they first poured on to paper. “To be, or not to be: that is the question: Whether ’tis nobler in the mind to suffer the slings and arrows of outrageous fortune, or to take arms against a sea of troubles”. It’s a great question. If I am looking at these words and try to relate them to my Ankylosing Spondylitis, I wonder how far will I go to keep from a flare, be able to get some sleep or just have a day with a little less pain? Can I just “be” me, through even the worst of pain?

I must admit I’m currently feeling a little less than my best since I’m due soon for my next injection and the previous dose has had its magic, feel good powers wear away. I get frustrated because I know it’s close, and I even try to convince myself the only reason I’m hurting is I know it is almost time. I start with the “what ifs”. If I didn’t know it was coming would I really still hurt? Is it just mind over matter? I have so much to be happy for right now in my life. I keep trying to ignore the horrible pain and the complete exhaustion I am experiencing at the moment and focus on all the good. I want so badly to take full advantage of all of these extra exciting events in my personal life, but as many people with AS know, you attempt to give 110% and when you end up with several sleepless nights of pain as a result of giving your all, unfortunately, it can catch up to you, physically and emotionally.

So now having to wait a week until I get that little help of relief from Simponi, I have to turn back to the pain medicine which is something that can interrupt a person’s day. I was able to put the pain meds away for so many weeks I think I got spoiled a bit. My schedule is full during the day running errands and playing taxi for my children so pain medicine isn’t on the agenda when driving is needed. I will be honest that I do enjoy having the busy days. I love that I get to “be there” for my kids and husband when needed, but I wonder if sometimes when I am feeling less than my best if I am really there. I’m also in the process of moving into our new home so I have no time for the daily brain fog that so many lovely pain medicines offer. Deep down I get a guilty feeling if I take one during the day. As if I am doing something wrong trying to help ease the pain. I know that this guilty feeling I have is a bit silly, but I just can’t seem to shake it. I want so badly to feel “good” that I get to the point that the results of brain fog outweighs the pain. The loss of being able to control my situation is all very overwhelming.

Living with Ankylosing Spondylitis does fill each new day with choices. You have no option but to make them. If you have AS you know that there are definite plus and minus points with each action you take. Do I choose to push forward at whatever cost? I can’t speak for others, but for me, YES! Life doesn’t stop for AS, so why would I ever stop for it! If it means I get a bit run down or attend a few events a little foggy it will be worth it knowing I never let AS get the best of me. I choose to “be”. That’s my honest, simple answer.


Our planet

The Science of AS Miracles

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Are the few moments of good results with Ankylosing Spondylitis scientific or miracles? I recently watched a show called Miracle Detectives on The Oprah Winfrey Network. It is about 2 people who search out what some call miracles, one a believer and the other looking for a scientific explanation. Me, being a firm believer in miracles had my interest sparked instantly. You quickly realize that there are so many people in our world that have extreme faith. It is refreshing to say the least. On the other hand, you also learn how many people want to prove them wrong. It’s such a shame that some have nothing better to do than dampen a person’s spirit. I know for me, when pain is at its peak, my faith helps to push me through. It is not for me to say what a person should believe but it is just that, what an individual person believes. Who are we to take that away?

Every time I step up to the pharmacy counter to purchase more medicine or go for another medical test I hope for a miracle that today will be the day the pain will go away. I sometimes feel like a hypocrite to be honest. I consider myself a person strong in my faith but at the same time am the first to turn to the science of medicine to find relief from the pain. I think it takes both science and faith to create a miracle. I can’t tell you the amount of times I have heard it is all about mind over matter. The people that say that usually don’t experience the pain from Ankylosing Spondylitis. AS’ers you know the people I’m talking about. The ones that “know” what we should feel, but in reality could never fathom our best day battling AS. I’m definitely all about keeping a positive frame of mind but some days that can only take you so far.

The amount of scientific treatments that are available on the market today for AS are a miracle in themselves. I feel that we have to embrace aspects of science combined with our beliefs. Whether you believe in miracles or not, you should always grab a hold of the hope that things will get better. Maybe not today, maybe not tomorrow, but eventually.

I believe we all have a purpose in this world. Whether it be to teach, learn or experience, we are truly here for a reason. Trust me, I question “why” all the time I was given this disease, but I continue to learn from it and consider the fact that I am here a miracle. I’m constantly reminding myself that God only gives challenges to people who can handle them. If I had a dime for every time a doctor has called me a miracle patient due to my long history of multiple health issues I would be a millionaire. I wish for all of you to be your own miracle. Believing in yourself and doing everything you can to continue giving 110% to your battle with AS, whether it be scientific or faith-based, is your first step in being your own. Each of you helping to spread AS awareness is what helps to make you one of mine. Thank you for being the miracle AS needs.

Pain pills

Side Effects of Relief

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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?


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?