If you follow my Facebook page, you know I’ve been suffering for several weeks from intense spine pain. I saw my rheumatologist Wednesday and was diagnosed with spondylitis, which is inflammation of the spine. As of right now, my lower spine and neck are the areas most effected (although the pain radiates out to other areas). The pain is so intense I’ve been physically ill and have lost 8 lbs over the last 5 weeks. NOT that I’m complaining about the weight loss, but weight loss due to terrible pain and disease is definitely not ideal.
I’ve often said I would never use biologic medications to treat my psoriatic arthritis, but what a difference a few months can make in the life of someone living with an autoimmune disease. What a difference a few months have made in MY life. Autoimmune diseases are often completely unpredictable, as I’m experiencing first hand. My husband and I are in agreement that I can’t continue experiencing pain at this level. Pain takes its toll on a family, and plain and simple, my family is suffering… I’m suffering.
This wasn’t a decision I wanted to make, but it was one I had to. If the spondylitis is left untreated, my spine could suffer permanent deformities. My spine is one part of my body I don’t want to mess with. I’m 32 years young. I have two little girls and a husband who depend on me. I have the rest of my life to live, and I want to live it as healthy and pain free as possible.
This past Wednesday at my rheumatologist’s office, I had my first injection of Humira. I will continue to give myself Humira injections every 2 weeks. Since Humira suppresses the immune system, making me more susceptible to infection, I feel it’s extremely important I try to keep my body as healthy as possible to process this new medication. My eating habits will not change.
I really don’t know how I feel about all of this… I do know I’m numb and completely overwhelmed. As soon as my husband and I left my rheumatologist appointment, we learned our oldest daughter, Kylie, had fallen off a teeter totter at my brother’s house and landed on her elbow. That night we took her to the ER, and were told it’s fractured. I’ve been so wrapped up in taking care of Kylie and what she’s going through that I haven’t had a chance to process everything. I’m just waiting for it to hit me, and I’m sure when it does, I will require several tissues and some really good gluten and dairy free ice cream.
“My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever.” Psalms 73:26
Oh Megan! My heart goes out to you this morning! You are an incredible woman with a strength like none I’ve ever known! My thoughts are with you and your family right now. Hang in there, lady 🙂 I know I’m far away, but if there’s ever anything I can do…
Shirley Braden (@Shirleygfe) says
Sending you the biggest and most comforting of hugs, Megan! If I could I’d be right there beside you with the box of tissues and the gf/df ice cream. I’d even make the ice cream for us. You choose which flavor. 😉
Linda Stoddard says
Thanks for sharing this. I think you made the right decision–I’m struggling with the humira issue right now. I have RA and so far methx isn’t cutting it, but the cost of humira is a big factor. My co-pay alone is $300 a pop and my rheumy says I’ll need injections once a month (at this point anyway). I’m keeping my fingers crossed that the humira gives you relief and hopefully prevents further damage. You already have an important edge with diet, so you’re already doing all you can on your own. Take care and let us know how this progresses! xoxLinda
Linda Stoddard says
p.s. Hugs to little Kylie too!
Priya (Yallapantula) Mitharwal says
Take care dear. I am sure things will get better. I hope “humira” helps you recover and your daughter feels better soon. You sure do need that bowl of ice-cream. Keeping you in my prayers.
ashley weaver says
Ohh Megan I’m so sorry things aren’t going so well for you. Know that you’re in my thoughts and prayers and I wish there was something- anything!- I could do to help. We love you guys and hope things look up soon! <3
Cathleen Wallach Hollister says
I hope you are better soon. You have to do what is best for yourself and use all resources available to be well. Thanks for sharing and you are in my thoughts.
Kaye Corbin says
Huggs to you all. Tissue are a good thing, have a good cry and then move forward. In the short time I have followed your blog that is one thing I have learned. Feel the disappointment and then find a path that works with it.
If cost is going to be a factor in your treatment (or Lina S.) check out the co-pay assistance program that Humira and most biologic manufacturers have. They will pay for most or all of the co-pay and the insurance picks up the rest. For Humira look at http://www.humira.com/global/financial-assistance.aspx
Good luck, and you are NOT giving in, you are following the necessary course for your body right now.
What an awesome scripture to help you through the tough times! Hang in there in the arms of a loving Father.
Oh no, Megan! What can I do to help you? I highly recommend a good cry for getting out some of that stress and emotion, but please reach out and ask if there’s something any of us can do to lighten your load. Help with the girls? Pick up some groceries? A hand with some housework? Don’t be afraid to accept help!
Mairi Kincaid says
My heart just aches for you. God is walking beside you every step of this journey. I want you to know how much your recipes have helped me in the past few weeks. I was recently diagnosed with chronic Lyme disease which is a nasty illness and requires a gluten free and anti-candida diet (no sugar or fruit, low/no carb) while undergoing treatment. As silly as this may sound, your sugar free chocolate bars have been a saving grace. In a time of what feels like intense deprivation and restriction, that is the one dessert that I can have and it feels truly decadent. Sometimes when you’re feeling bad it is helpful to know that you have helped someone else. I want you to know that you have helped me so much in a very difficult time. I will be praying for relief from your pain and wisdom in your treatment decisions. Thank you so much for what you have done for me.
The Curly Haired Chica says
Thank you for sharing, Megan. It sounds like an agonizing decision, but I will pray that it relieves you of your pain and that your lives return to normal. I know your faith is strong and appreciate it so much that you allow that to shine through. I do too, and I’m so thankful to see that I’m not the only one! God is good and He will continue to guide you.
Blessings to you and your family.
“Curly Haired Chica”
I’m 16 (almost 17), and have missed so much school due to back stiffness and muscle pain as well as widespread nerve pain throughout my body. My doctors thought I had spondylitis as well, but it was ruled out. So far it looks like I might have fibromyalgia (YIKES) so I definantly know how you feel. Just keep hangin’ in there! I hope you (and Kylie) get to feeling better. Who knew teeter totters could be so dangerous?!?! Enjoy your yummy gluten and dairy free icecream! 🙂
I’m with Gurb on this one. I have PsA, I am guessing for almost twenty years (I started with symptoms in my early twenties) but with four pregnancies I went into remission and was able to keep off meds for a good part of it. I remember my first flare up and wow, it was intense. For me, the diet helps a lot but if I get to that point where I stop responding to the diet, I would do it too. Megan, it sounds like you were really taking good care of yourself leading up to it and I bet your body will be stronger for it. I will be forever grateful changing my diet, on meds or not! Oh, and poor kid, “funny bone” yeah right, elbow injuries hurt! Wishing you a stress free summer.
I am sending a big hug and lots of positive energy your way. I am happy you are doing what will make you most comfortable. As a mother, you have to take care of your health and wellbeing too. Take care friend!
Ahhh hugs Megan! Thinking and praying for you and your family during this time! Poor Kylie … I can only imagine how a fractured elbow feels!!
Oh Megan…I’m so, so sorry.
Thank you for sharing with us. I think it’s important to share our journeys with others. You WILL be helping someone out there, if not making someone feel like they are not alone.
If we lived closer I would be there helping you Megan! AND make you a month worth of ice cream! I’m sure you have a wealth of support around you though. I have no idea what you’re going through, but I can relate with my miserable Crohn’s flares and lupus lung flares. So I can only image this pain and inflammation in my spine. It’s unbearable! And I’m so sorry to hear about your daughter. My goodness.
I wish I had something poignant to say here. I can only imagine what this life challenge is like for you, Megan. Please keep us posted, okay. You’re amazing.
Hugs to you and your family,
I have PA. I’ve had it since I was 14 years old. I’ve always been able to deal with the ups and downs it has given me. I’m tough you see. I work hard to stay healthy and I remain positive in the face of adversity. I always get the best of my illness. Till now. Now things are different… and I am a bit hopeless.
In the past 2 months I’ve barely been out of bed. I’ve finally got a new specialist here in the UK (Just moved here 3.5 months ago) and for the first time I had Biologics suggested to me… I think in Canada (where I hail from) they were just out of my price range because my specialist there wanted to keep me on Methotrexate.
I’ve been on Methotrexate for 6 years…my flare-ups have become more and more frequent and seem to last longer… recently I started experiencing pain in joints I had never had it in before… my rib cage for example.
I would really appreciate if you detail your experiences with this new medication… I am terrified to take it… but I have lost my job and being far from my family… my husband is my soul carer. He works long hours to pay our bills since I am no longer contributing which leaves me home alone unable to do much (having a shower is quite a feat)… We need a solution. I want to get my career back… I want to be able to have kids… I know not everyone gets to have that… but if taking Biologics will get me those things… then I will do it. Im very passionate about living life to the fullest (who isn’t?) so I am willing to take the steps necessary.
Thank you so much for sharing your experiences! I have just gotten on word press… and although its depressing reading about so many other’s struggles… it is also so good to hear there are other options, solutions and more imporantly hope! Thanks again!
MAID in Alaska says
Thank you everyone for all of your comments, sharing your personal stories, well wishes, etc. I hoped to respond to each of you individually, but unfortunately time and life in general have prevented me from doing that. I wanted you all to know that I appreciate you – and all of your comments. Thanks again for all of your support!
Love and Hugs,
I so appreciate all the information you post on your blog. I have the same types of arthritis as you but haven’t reached the point where I need lots of medication for it. I also vowed to myself that I would never take biologics but am encouraged by your experience with them. Thank you so much!
Cindy Monroe says
If at all possible, try Red Light Therapy, I have RA and Fibro. It has helped me not to totally fall apart. I get mine at the local Tanning Salon.
Many people with painful conditions have benefited from ‘earthing’. Simply making sure you’re body is the same charge as the earth. Here’s a documentary about it, probably you have seen it. It’s from your part of the world.
Here’s an article about it
Thanks for sharing the bread recipies, I will try one.
Bernard from Australia
Thank you for sharing the article! I’ll check it out. 😉