Welcome To My New Life Fighting A Disease I've Never Heard Of Before....... Ankylosing Spondylitis

  I have been steadily decluttering my home. It amazes me what we have acquired during 26 years in this home. I think we become blind to items when we see them daily. I cleaned a huge contractor size trash bag of clothes and miscellaneous items out of my oldest son's bedroom and closet. My trouble is sometimes I have an emotional bond to my kids childhood items. I remember how cute they looked wearing certain clothes or how attached they were to certain toys. The funny thing is when I ask my kids if they want to keep the item, most of the time they said "no". I was shocked when they first began telling me to donate items. I finally realized I wasn't hanging onto the items for their memories, it was for my memories.    One day I watched a lady on YouTube, she was downsizing and decluttering. She recommended the book "The Magic of Tidying Up".  Some people may recognize it as the Kon Mari method. I first checked out the ebook version from my local library. I...

  I'm not sure if it's just me or if everyone experiences this, but there are days I don't want to leave the house. It can be days before a scheduled appointment or task, that I begin to dread the thought of going. There are days that I hurt and ache too much to go anywhere. Those aren't the days I'm describing. It's just a mounting sense of dread that holds me back. I can schedule something and even look forward to that event, but as the event draws closer my eagerness turns to apprehension. My mind is consumed with "should I cancel" or "maybe I can leave early". I begin to question myself as to why I even scheduled the event in the first place.    I had my annual mammogram scheduled for 2:30 yesterday. Last Friday, I began thinking maybe I should cancel. My thoughts were, I have had a mammogram every year, so I probably could put it off until next year. I mean all my prior mammograms have been clear, no lumps or cysts. Plus, my mom doesn...

  Thanksgiving is a wonderful time to reflect on our many blessings. It is also a time to cherish family gatherings. We celebrated Thanksgiving at our home on Friday. Thursday was not an option due to my oldest son's work schedule. On Saturday we were invited to the home of my daughter's in-laws to eat Thanksgiving dinner with them. We truly enjoyed both days. Each was filled with much laughter and more food than we could possibly eat.   I was thinking back to my childhood Thanksgivings. My mother cooked on a wood cookstove during my early childhood years. I can not imagine cooking a turkey that way. I remember mom would have to keep an eye on the wood, not putting in too much, but enough to keep the oven temperature stable. We had running water from a well. However, we had no hot water heater, so there was always a big canner of water sitting on one end of that stovetop. Mom always knew where the stovetop was the hottest and moved her pots and pans around accordingly. At th...

  Saturday night was torturous. I rolled and turned all night. My hips and lower back were in severe pain. I think, as a friend suggested, I may have overdone myself. Also, I have been noticing my weekly Monday dose of Cosentyx has me feeling wonderful until Friday or Saturday. I assume that's why my doctor is having me do a five week loading dose. Fingers crossed when I begin my monthly injection it will be effective for the full month.    Monday morning I was psyched to get my injection. Exactly as the prior two weeks, by midday I felt so much more energetic. My husband took some vacation days from work this week. He and I have had a productive start to our week.   My youngest son will be having a birthday soon. He wants a new bedroom, since his sister got married last July we have an extra empty room. My husband and I thought a good birthday present would be to remodel the room my son wants to move into. Our money has been tight since I had to give up my job l...

  I didn't want to celebrate my upbeat energy after my first Cosentyx injection. I was fearful it might only be a placebo effect. This past Monday, I had my second Cosentyx injection. My doctor wants me to do a loading dose of one injection per week for five weeks. After the five weeks I will begin a monthly injection schedule.    I am still trying to hold back on my excitement, because I don't want to loose hope. However, I must say after this second injection, I feel so energetic and alive! I told my husband I feel more like myself every day. It is a feeling I am slowly remembering, it's so familiar. It has been a very long time since I felt like myself. It's scary that my life had been so consumed with pain and fatigue, that I had almost forgotten what it feels like to be me.   I am making progress on my housework and looking forward to the upcoming holidays. I know the previous few holidays have been exhausting. Maybe this year will be filled with happiness a...

  Have you ever found out something about someone close to you that shook you to your core? Something that blindsided you? Something that the hurt is so severe you will feel it for the rest of your life? Something that feels like a knife going through your heart?   If your answer to the above questions is "no", I hope you never experience that kind of pain. However, I dare say there are more who have been there than not. If you have love, friendship, or really any kind of relationship you probably have experienced at least some degree of this hurt.   Why do I bring this subject up you ask; the hurt I described above can be devastating to us with autoimmune diseases. The deep hurt suffered in our emotional health spurs our disease to kick into high gear. Ankylosing Spondylitis looks for opportunities to strengthen it's hold on our bodies.    Some may say, I am fortunate because I can count the number of times I've had this deep hurt on one hand. One of my ...

Yesterday was my yearly checkup. I always dread going for it but I love my doctor. She helped me through some of the lowest times in my life. She delivered all three of my children. After my third child, I slipped into a deep, dark, postpartum depression. My doctor isn’t like typical doctors, who never share their vulnerabilities. In her past she has had two nervous breakdowns. Some people in my community, ask how can you trust a doctor who has such a history? Thankfully, there is a lot of people in our community who views her breakdowns as I do. It’s a strength in my opinion, my dr doesn’t try to hide her struggles. She is not a robot. Life and issues affect her just as it does her patients. She has no problem sitting and really talking to her patients. She doesn’t only read her patients medical charts, she knows their families and cares. When I experienced my postpartum depression, she sat and listened to all my worries and fears. She wasn’t like my family members who said, “S...

  If you follow my blog, you've learned a few things about me.  #1... I am not a professional writer, I'm sure I make many editing mistakes. Sorry! #2... I started this blog as an outlet for my emotions, but it has grown to be an instrument to promote awareness of Ankylosing Spondylitis. #3... I have never blogged, tweeted, or had a domain name before starting this adventure. I didn't even know what a domain name was!   To expand on #3 a bit, my children laugh at my computer skills and knowledge. Until a couple months ago, I had no idea there was so many social networks online. It overwhelms me!   My teenage son helped me begin setting up my blog on Blogger one day before school. Unfortunately, his school bus arrived before we added all the gadgets on the layout. I did the best I could, adding gadgets if they sounded useful to me. You can see how lost I was without my son to educate me.   I would sit down to write a post in the mornings after my son le...

  I'm looking forward to today. That's a huge thing for anyone with an autoimmune, degenerative disease to say. Most mornings my attitude is more guarded, since it's a toss whether it'll be a good or bad day. However, based on my day yesterday, I have hope. Hope....is amazing!   Day before yesterday, I received confirmation that my quantiferon TB test was negative. If you've read my blog for a while you know I had received an inclusive result on my TB test. I researched what an inclusive result means and basically it could be due to tech error or due to a person being immunosuppressed. Both of which sounds reasonable in my situation.   My doctor didn't want me to begin my new medication, Cosentyx, until I received those negative results. So finally I had the all clear to begin my Cosentyx. I injected around 5:00p.m. Monday afternoon. I really like the "sensoready" pen. When I was on Enbrel there were times I had trouble getting the top button to ac...

  As I have mentioned, I had to give up my employment last December. I try to find projects to occupy my mind when I feel well enough to produce something. Sometimes it may take me many days to finish the project, due to the fatigue or pain Ankylosing Spondylitis bestows upon me. My husband would say some projects have taken years and are still incomplete. Specifically, a train cross stitch I began for my son's 5th birthday, my son is now almost 22 years old and it's not completed yet. I'm not sure why I can't seem to finish it. It has become a inside family joke. There isn't a lot left to do on it, maybe this will be a Christmas present this year.   I decided since we are now a one income family, I need to "make" as many Christmas presents as possible. I am self conscious about sharing my crafts with family and friends. I always fear it's not good enough or not perfect.   That fear has been the story of my life. Looking back on my life, I have alw...