What The Kon Mari Method Has Taught Me

  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 didn't finish reading the ebook version. I am old school, I love actual books. Something about turning the pages, feeling the book in my hands keep me focused on reading. Therefore, I bought a copy of the book. I read through it in no time. I really didn't want to put it down. It was truly enlightening for me. I highly recommend the book if you are struggling with decluttering or downsizing.

  The Kon Mari approach tackles the whole house, not just one room at a time. It deals with a group of items. Such as books, you gather all the books in every room of your home. You ask questions to yourself about each book. You decide if each book is valuable to you. Does it bring joy into your life? If it does, you keep it. This method had never occurred to me. I formerly just worked on one room at a time. More times than not I ended up shuffling items from the room I was working on to another room of the house. This method keeps me from doing that.

  Since my Cosentyx has me feeling more energetic, I hope to complete my declutter before Christmas. However, with an autoimmune disease like Ankylosing Spondylitis, you never know how each day will be. I have decided that's okay. My clutter isn't going anywhere until I get around to it. Day by day or week by week I will get it all whittled down eventually. Sometimes, I question why I have to face this chronic, debilitating illness. There are days I think it is to teach me patience and that everything in life isn't going to be perfect. We have to accept that or this disease will pull us down quickly.

 I'm hoping each of you have learned to enjoy your life even if it isn't perfect. It's the only life we have. Live it well!

Gentle hugs to all my fellow Ankylosing Spondylitis fighters. 

Ankylosing Spondylitis and The "C" Word

  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't believe in mammograms. She is 81 years old now and has had one mammogram in all those years. She is very steadfast in her belief that mammograms are what causes woman to develop breast cancer. You can argue the known facts with her but there is no changing her mind. I guess after hearing her theory for so long, it starts to play in the back of your mind. 

  In the end, I did choose to  have my mammogram yesterday. I know with the medications I use for my Ankylosing Spondylitis I have an increased risk of cancer. Which is a very scary thought. I lost a dear friend earlier this year to cancer. She was only a couple years older than me. She first had breast cancer in one breast then the other, followed by cancer in her pelvis, ribs, and various parts of her body. It was so sad to see her go through the devastating effects of cancer. 

  Even with my rising feelings of dread, I will continue to have my yearly mammograms. I will advocate for all woman to have their yearly exams. I will cherish the memories of my sweet friend.

  Gentle hugs to all. May you cherish those close to you daily.

Turkey Thoughts and A Wood Cookstove

  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 that time it was just another everyday occurrence to me. I never thought about the skills my mom used to cook us a Thanksgiving meal or any meal for that matter. I remember she'd always make a Sweet Potato Casserole from her own canned sweet potatoes for Thanksgiving. It was my favorite. 

  She grew and canned a lot of our food. Of course, she canned on that old wood cookstove. You don't know how hot a house can get in the summer with a wood cookstove fired up for hours, canning homegrown vegetables, unless you've experienced it. Of course we didn't have air condition, but we would open all the windows and use box fans. My family would end up sitting on our front porch in the evenings  because it was cooler than being inside. It was such a peaceful time.

  My mother will be 82 years old soon. It was wonderful to have another Thanksgiving together. It was eye opening to look back on prior Thanksgivings and realize all my mom did for us. My mom is one of the hardest working woman I know. She has sacrificed all her life for her family's benefit. Probability stands that I may never face the hardships my mother faced. I admit I live a life of convenience. Push a temperature button on my stove, set a timer to check the turkey, and in a couple hours take it out of my oven. If the house gets too hot from all my cooking, the air conditioner will cool it off in no time. 

  Tomorrow I plan to give my mom a big hug. I hope we have many, many more Thanksgivings together. I hope each of you enjoyed Thanksgiving with your families. You are a big part of what I am thankful for this year. I needed a place to vent. You, my friends are the people I look forward to sharing my crazy life fighting Ankylosing Spondylitis with. Thank you from the bottom of my heart.

  Hugs my AS warriors!

 

Ankylosing Spondylitis, I Will Fight!

  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 last December. Thanks to crummy Ankylosing Spondylitis, we have to figure how to remodel on an almost nonexistent budget. However, with doing this bedroom for his birthday we kill two birds with one stone. Thankfully my husband used to be a contractor and I even helped on some of his jobsites. 

  Today my husband and I purchased the new sheetrock. In the past I helped my husband carry and install sheetrock. At Lowe's today I tried to help him load the sheetrock. If you've dealt with sheetrock before you know they are binded in pairs. We were purchasing the thinnest Gypsum board but I had trouble lifting it. I couldn't believe how weak I have gotten in these last few years. My husband pulled the bind paper and we loaded it one piece at a time. Even at that I was amazed that I struggled with it. It's crazy to be so weak I can't lift my share. Although my dear husband offered to carry the sheetrock alone, I want to help. 

  I decided I want to tell this monster disease a few things.........

 Dear Ankylosing Spondylitis,

Watch out! I am not going to let you take everything from me! I am determined to take back control of my life. I will fight you every step of the way and I will overcome all the obstacles you set before me.

Sincerely,
Fighting My Body Daily


  Hoping each of you have a productive, winning week!  Hugs my friends.  Never say never!

Can I Return To The Me I Used To Be?

  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 and energy to accomplish all of my "to do list". 

  This is a short post today, not a lot of my ramblings. I only wanted to share my experience on Cosentyx. My wish is it gives fellow Ankylosing Spondylitis fighters hope for their future. If one medication or other intervention isn't working for you, don't give up. Talk with your doctor and work on a new plan. 

  We all deserve to be the pain free, energetic people we used to be.

  Gentle hugs my friends!

Your Health Is Linked To Your Emotional Wellbeing

  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 experiences was when I found out my dad had small cell lung cancer. I was always a daddy's girl. No matter what I always knew my dad was on my side. The doctors gave dad a life expectancy of six months. I was pregnant with my first child and prayed my dad would live to see my child. Dad actually lived 6 years, he adored my daughter from the day she was born. Four years later I had a son, whom I named after my dad. Dad was thrilled with my son. Sadly, the day came when my dad passed away. That was another one of those sharp, knife through the heart experiences.

  The other incidents of me being blindsided were relationship related. When you open your heart to someone you risk being hurt. Sometimes the other person in the relationship may not even see how deeply they have hurt you. Everyone has their point of view and sometimes if you can't agree on it, it can lead to hurt, bitterness, and even loss of relationship. If one person sees an action as no big deal and the other person views it as devastating, how do you go forward? Human nature makes a lot of people want to hurt that individual as much as they've hurt you. Others bottle up their emotions which can lead to bitterness, depression, stress, or a whole host of medical problems. With our immune systems already attacking our body, placing more emotional issues on it only worsens everything. So, how have I dealt with these times of "knife to the heart"? In some instances, I reflected for a while before speaking with the person about it. They explained their views and apologized. While I did accept their apology, I will never forget how deeply it hurt. Thinking of it now brings it back as painful as ever. Some situations I have built a wall where I will not let that person enter again. I can move forward but will never regain the complete trust of our past.

  My advice is if you can forgive and move forward do so, even if you never forget. However, don't let anyone continue bringing hurt into your life. Your life and health are the most important thing! You must put yourself first or you will be no good to anyone. 

  Gentle hugs my friends. Have a wonderful Wednesday!


Postpartum Depression - Could Ankylosing Spondylitis Spur It On

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, “Snap out of it! You have a baby to take care of, you can’t be sad with such a sweet bundle.” Those comments didn’t help me in the least. I knew I had a precious gift. I knew I had to care for my sweet baby. I knew I should be happy. I didn’t know why such a hopelessness filled my every thought.
At the time I had my child, my unbeknownst autoimmune disease, ankylosing spondylitis hit with a fury. My hands continually felt like I had very thick gloves on them. Feeling my child felt distant and I feared I would drop him due to this odd sensation.
It was a scary, hopeless, overwhelming, panic stricken, feeling that never subsided twenty four hours a day. I finally called my dr, she had me come in immediately. She had instructed her front desk, I was not to sit in the waiting room, but instead be taken to an exam room as soon as I arrived. She came into see me as soon as she finished the patient she was in examining.
She knew the feelings I was experiencing. She shared with tear filled eyes, that I spoke of the life she’d faced not once but twice. She sat with me probably an hour, even though I’m sure all her exam rooms were filled with waiting patients. She told me of what she’d been told in counseling. She discussed the types of medications that can be used to treat depression. She explained side effects. She discussed how counseling could be beneficial for me. It was such a comfort to have someone who really, fully understood.
If any of you experience any type of depression, I highly urge you to seek treatment. Don’t wait, don’t postpone. It is so important to value yourself enough to get the help you need. I know sometimes there is a stigmatism to mental health issues but ignore these outdated opinions. There is help for you. There is happiness out there for you.
One thing my doctor told me that I will forever remember is…..
“I know right now each minute feels like a lifetime, but one day you will look back on this time of struggle and you will see it was just a blip, a tiny fraction of time, in what will have been a lifetime of happiness”
Wishing each of you a stress free, day of happiness!
As always,
Fighting my body daily

Writing A Blog To Raise AS Awareness - When You're Social Media Illiterate

  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 left for school. I found this time of morning, when no one else was awake to be my time of self reflection. In truth, mornings are difficult for most AS sufferers. Mornings bring stiff joints, aches from the night long tossing, and a body that feels years beyond it's current age. I found I can have a cup of coffee, take my morning medications, and post while my meds have time to ease some of my discomforts.

  As I began pouring my heart out on this blog, an amazing thing happened. After several posts, the stats showed people were reading my content. I remember rushing into my bedroom and awakening my husband, he works second shift so he sleeps later in the day. I couldn't wait to share with him that someone had read my blog. He very groggily told me, "that's great babe". I tried to contain my excitement until my husband got up later that day. At that point, I was beaming and my husband got excited for me as well. He wanted to read my blog. I think I shared more in my posts than I sometimes feel comfortable sharing with him in person. In the upcoming weeks that followed, my husband encouraged me to continue posting. He read each of my posts and shared his feelings about some of my subjects. He tells me I need to continue this, it helps me and it can help some other AS fighter. My page views increased and slowly my audience spread to other countries. I am thrilled beyond words each time I see people are reading my content. I am amazed people in other countries are interested in what I think or say. For that matter, I am amazed anyone is interested in what I say! I wholeheartedly thank each of you who are viewing my blog. I have a domain name now and plan to continue investing in my blog to help spread awareness.

  When I was first diagnosed with Ankylosing Spondylitis, I felt so alone. I found it hard to get information on the disease. I finally found a support group online, who have been very valuable to me. With this blog and the number of people viewing it, I feel like I am not alone in my passion for helping others with Ankylosing Spondylitis. You give me a reason to smile each day. Thank you for being my inspiration to spread awareness. Hopefully, someday with awareness spreading, the medical field can discover a cure for this monster we face.

  In closing, I wanted to thank the lady who commented on my Halloween Happenings post. She and I had conversed back and forth. Today I tried to update some of the gadgets on my blog. Sadly, my updates somehow deleted her comments on my posts. Being computer naive I don't know why this happened, but I do apologize to her. I hope she will understand my accident and continue to read and comment. I love hearing from everyone.

  Gentle hugs friends! May your covers lay lightly tonight and peaceful sleep be yours!

Comparing Humira, Enbrel, And Cosentyx Injection Pens

  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 actually click and inject the medicine. Sometimes this caused me to have to stop and reposition the pen until finally it injected. My humira pens always worked fine when I pushed to inject. However, the Humira pen had such a small window to view the final colored insert that signaled the vial was completed, I found it difficult to see. I learned with the Humira pen I could listen and hear a swish when the last of the medicine went into me. Therefore I didn't have to rely on that tiny viewing window as much. This Cosentyx has a huge viewing window that goes completely around the pen, not just a tiny window. I can see the medication in the pen very clearly as well as the colored insert when the pen is empty. Another thing I like about the Cosentyx pen is I can see the needle inside the tube. With my prior medicines the cover around the needle was dark and I could only check the needle by peeping up the end of the tube. I often tried to see if my injection site pain was correlated to a bent needle. With my new Cosentyx sensoready pen I can see if there is an issue with the needle. For those of you who are afraid of needles or just don't want to see the needle don't worry, the covering is opaque around the needle. So you don't even notice it unless you're a curious kitten like me.

  Yesterday, I had a marvelous day. I had energy and felt like the "me" I used to be. Oh, what a glorious feeling! I wondered if I could receive benefits from the Cosentyx in less than 24 hours or if I was experiencing a placebo effect from it. Whichever it was, doesn't matter at this point, I just want another day of it! I have high hopes for my day ahead and for my new medication.

  May each of you have a pain free day with much joy in it!
  Until next time my friends, gentle hugs.

Self Doubt & A Dishcloth

  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 always felt I had to be perfect. I have suffered an extreme amount of anxiety due to thinking what I did was not perfect. I have shunned away from opportunities due to the fear. I internally always think someone else could have did better than I. This overwhelming fear has extended to every aspect of my life. Even cooking meals for friends or gatherings has caused me to worry. Thinking the food may not taste as good as if someone else cooked it. How can one person have so much self doubt? I'm not sure where the fear came from but I remember it as far back as when I was 6 or 7 years old. It's strange I can recognize my fear of failure but can do nothing to rid myself of it.

  While raising my three children, I have always tried to teach them not to allow fear to hold them back from anything. When my daughter was a young teenager I encouraged her to travel with classmates to Europe, even though inside I wanted to hold her closely by my side. I encouraged her to travel, make new friends, and try new adventures. When she was deciding on a college, she had planned to live at home and commute daily. After touring the college she chose, I encouraged her to live on campus and experience life as an independent young woman. Thanks to my daughter's life experiences, she is my window into living a life I was never able to, because of all my self doubt. My middle child also has had amazing experiences. He works as a community servant and deals with a huge variety of situations and people. He has faced difficult days but triumphed above all of them. My youngest child is still unsure of himself in many aspects. I encourage him to step out of his comfort zone. I know he has a bright, brilliant future ahead of him. My children are my heroes, my greatest joys. I have been given the most wonderful job of all, raising these three exceptional human beings.

  In writing this post, I intended to share a picture of the craft I am making for the ladies on my Christmas list. Somehow I went off that subject on a long and curvy road about self doubt and fear. Perhaps I needed to vent or maybe this will be an encouragement to someone in need.

  In closing, I will get back to my homemade gift. I am crocheting each of the ladies on my list a couple dishcloths. The dishcloths are not perfect by no means. I may have missed a stitch here or there. Some may be a tad larger than others. Some are definitely not square, but they are being made with love. I hope my friends will enjoy them and overlook their imperfections. Working on these dishcloths have given me a sense of accomplishment and kept my mind off my disease. While I crochet these I am the winner, not Ankylosing Spondylitis!



  Have a fabulous Monday friends. Don't allow anything to hold you back this week!