My Story – by Bret (part 2)

Thank you for coming back. Your emails have been very nice to read, and I truly feel your pain. The main objective of my story is to help others understand, and for you to hear from someone who has been very recently diagnosed with A.S. This article is aimed at the guys/girls who are brave enough to get online and check out some websites because they have A.S… This is for you.

The article may seem like the worst case scenario, but it is, as I have a severe case of A.S. So let’s talk about A.S. and if you should get tested.

Some of you may understand what I am going through, as you have been through it, but many of you may have fewer symptoms, less pain, and are vastly different from what I am experiencing. That is what is so difficult about this disease, about being diagnosed, and the unawareness of the blood test needed from your doctors. You have to ask for the test as it may never be asked of you. The blood test is called HLA-B27. If you are positive, your pain is real, your inflammation is real and your exhaustion is real. Try to see a rheumatologist, as they can accurately diagnose it. Again he may say its Rheumatoid Arthritis, and it maybe is, but always asks for the blood test. You could also ask for a MRI from the neck to pelvis. This will show if there has been any fusion of bones, extra bone growth, or stenosis (which I have just be diagnosed with). They tried 3 epidurals on my lower spine and it just lessened the pain. But they tell you, it is a 50/50 shot if it will work, as is surgery.

The earlier Spondylitis is caught, the better the chance there is that less damage has been done to your joints, tendons, and other organs of your body. If you do test positive, always realize there is hope. The awareness is growing, the medications are getting better, and the doctors are figuring it faster than ever before. But there still needs to be a push to get it to you, the person who has the pain.

After searching several websites, I have discovered how common this disease is and how many people are affected by it, or one of its many subcategories. It is very common, but forgotten many times by doctors. Remember it took 9 months get my RA diagnosed. My mother was 69 years old when she was diagnosed, and my brother was 32 years old. Both go to other prestigious hospitals in the area we live, so maybe it was just not understood here.

There are 2.7 million of us in the US, and 33 million worldwide. Making it more prevalent than Multiple Sclerosis and Cystic Fibrosis combined! That scares me so much. I now know that there are so many people out there that are living with incredible pain who have not been diagnosed. Meaning they are not on the correct medication or doing the correct exercises. That makes our job harder. I like a challenge, and I hope you do to. We need to get the word out and help these people.

An example of a sad and discouraging case: I was recently laid off and had my health benefits cut on the day they terminated my contract. That meant no pain killers or Humira until I found alternative health insurance. Even though I told them I had the disease, they didn’t fully understand how important health insurance is to a person with A.S. and how I need to be in touch with my doctors all the time. I am taking 18 medications and MRI’s need to be done. My dream team of 6 doctors are working on trying to help me with, eye examinations, x-rays, physical therapy sessions, etc. All of that now gone because my employer didn’t either care, or didn’t understand the implications when they took away my health insurance. I convinced them to give me at least 2 months more of health insurance. But I had to beg for it. Its demeaning, frustrating, and truly a horrible feeling of having to fight for your earned health coverage. I found out they even cut my insurance before they called me. Talk about life not being fair and corporations not caring or understanding for their employees at all. It didn’t used to be that way. Times have changed.

And sometimes the medications which are incredibly expensive, even with good insurance, your out-of-pocket expenses can be very large. Last year, my out of pocket, with good health insurance, was over $10k plus. I am hoping the Humira I am on is working, and my medication prices will go down. And now all the testing has been completed, I am hoping this year’s out-of-pocket will be less, but probably not by much. But the Humira is working and I feel it working, it just takes a long time start feeling the changes. Changes like not waking in the middle of the night because pain is shooting thru your body. I have incredible night sleeps now and sometimes sleep 9 or 10 hours. Exhaustion plays a very large role in my illness.

Your pain is still pain, and no one, not your doctors, family or friends, understand the pain you feel and what you are going through. Others with A.S. may not either, as it affects us all differently. But don’t let that discourage you. My doctors have tried so hard to keep my pain down and improve my life. And they are doing it!

If RA runs in your family and you are showing odd symptoms like: pain in the heels and soles of your feet, fatigue, pain in your lower back, buttocks, hips, or your knees, then I would suggest at your yearly physical you ask for the HLA-B27 blood test. If RA runs in your family, you should get your immune system tested – as A.S. is an autoimmune disease. You can go to a website to find other symptoms or look at the quick list on WebMD.

It’s also hard to diagnose it because injuries are happening to you and you aren’t putting it all together like I did. I slipped 2 lower lumbar disks at age 40 doing reverse crunches at the gym. I developed asthma at 41. My right hand started to not be able to grasp things as tight as it could before. I developed sleep apnea. My eyes kept swelling up in the night and I wouldn’t be able to see in the morning. I thought it was pink eye. But it happened every other week for months. And then my knees would give out and I felt unbalanced some of the time. Then I fell down the marble stairs.

After the stair fall, I call it the trigger factor, the last year had been hell. My whole body was in incredible pain. That’s when I finally went to the doctor as something had to be wrong. All of these injuries happened within the last 5 years, before that I was in perfect health. But it took me that long to figure out I have something very wrong. I have had this all my life, but it didn’t show itself until I was 40.

I missed this also… my family. My mother was has had back pain starting with her neck, through her thorax to her lumbar. She has surgery once that saved her from not being able to walk. But like several of us, she claimed her back injuries were from whiplash on a roller coaster, doing laundry in her twenties, and twisting wrong. But amazingly she never got tested for RA. She herniated her first disk in the 80’s after driving with some friend straight thru from Chicago to Miami. But we came up her “trigger”; she was on a high school bowling team. She has spent the majority of her life in pain 24/7, and sometimes has episodes where she cannot get off the couch for weeks, or needs a cane to walk. She thought it must be due to physical injuries she had while she was younger. At my insistence I pushed her to get tested for HLA-B27 and she tested positive. Now we are waiting to see what kind of AS she may have. It may be classic severe RA like myself or sub category like my brother. Because of her age and the other health issues she has, we will have to wait to see what type of medication she will be placed on. But because I pushed her, she found out what had been wrong all the years, not her doctors. And hopefully she will finally find relief from pain over 50 years.

But we are handling this as a family by supporting each other and getting thru day by day. Keep Calm and Carry On as Churchill once said.

And let me tell you about my brother. I admire him a great deal. He was a high school and college athlete, a walk on football player to a major university. His “trigger” was a spider/bug bite at age 8. The JRA went into remission at age 13. He was pain free for 19 years. But then again, in 2004, at age 32, he was diagnosed with Seronegative Spondyarthritis. It took doctors 2 years to find the right medicine for him, which was Enbrel. After being on Enbrel for a few years, he incredibly went into remission again. Remember only an estimated 35% of all people go into remission. He has been pain free since 2008, although I believe he has episodes, he just doesn’t like to talk about it. He sometimes stops taking the Enbrel. I don’t think it’s a good idea, and this is a disagreement we have a lot, as the disease is still within him and it can appear once again. If he continued to take the Enbrel I think he would stay in remission. But he has chosen how to handle it himself. He fears the side effects of his medication. A choice we all have to make. The damage that has been done to him is in his wrists and neck as cartilage has been destroyed, and bones have fused together. This damage was done before Enbrel. Again the earlier you find out if you have AS, the better chance there will be less damage.

Even though I had AS all my life, I personally believe, my asthma was caused by the damage done to my lungs, and the constant polyps that grow inside my sinus cavities (I have had 2 surgeries to have them removed) which has cause permanent scarring and tissue loss. My doctor has set me up with a stress test, to see if any damage has been done to my heart. It’s a rare organ to get damaged, but then again, I have a severe case. That should occur within the next month and as I write this article. The more information I can share with you, the better.

My brother is now being very proactive by having his twin daughters tested. They are both athletes as well, and are only 12 years old. But one of them has had pain in her feet and knee pain. We are hoping for a negative result, and that it is just growing pains. But being proactive is the key, and I admire him for taking the steps that will definitely help his daughters in the long run. The early they catch it, the better chance for less damage and less pain as long as she receives the right medication.

Well folks that is it for now. I hope for relief for all who read this. You are not alone in this. We are all in it together.

Bret


You can read Part 1 of Bret’s story here.
If you’d like to reach out to Bret or discuss anything about his story so far, you can do so by leaving a comment below. He is also happy for you to email him on his public email address at bsmstompsAS@gmail.com.

Does this story sound familiar? If you have a story you would like to share with others, then we’d love to hear from you.

 

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Ricky was diagnosed with Ankylosing Spondylitis in 2010. Exactly one year later he created Endless Trax, his personal blog about AS, to document his experiences and help inspire others. Living by the motto “your condition may become you life, but that doesn't mean your life has to become your condition”; Ricky has strived to be a positive role model and advocate for people with Ankylosing Spondylitis.

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