Ankylosing Spondylitis and Future Generations

  Today I received a call from my son's school nurse. My son wasn't running a temperature, but he felt dizzy, light headed, and nauseous. My oldest son went to the school and brought his brother home. As soon as he came in the door, I sent him to his bed. I tucked him in the bed and asked if he needed anything. He went to sleep quickly. I checked on him a few times. He looked so peaceful sleeping.

  This incident made me think about all of my children's futures. I pray they never have to face Ankylosing Spondylitis or any of the other illnesses that affect me daily. If you are a mother, you know how I feel. I would suffer any disease if it meant my children didn't have to experience it.

  My daughter has already been diagnosed with Raynaud's Syndrome. I don't think she takes the disease very seriously. I constantly remind her to wear socks or appropriate shoes to protect her toes. She does take better care of her hands thankfully. She wears gloves when it's cold outside. She has already had two surgery on both of her knees. She was in high school when her knees started locking up or giving out from under her. She had one knee surgery during her sophomore summer break and the other knee the next summer. At this time she is 25 years old and has arthritis in both knees. She goes through periods of extreme pain. I hope she doesn't need replacements for many years.

  My oldest son also has knee issues. It was recommended, when he was 17 years old, to have the same surgery his sister had. However, after seeing what his sister went through and the pain she has now, he refused to have the surgery. I didn't push him to have the surgery since he was adamant against it. He was diagnosed with Dyspraxia when he was in middle school. Due to the dyspraxia he has always been slow moving. He has never been able to fully participate in sports. He has an unusual gait and flat feet. He has chronic back pain. He began with back pain when he was a young boy. He was treated with physical therapy, TENS Unit, heating pads, and pain medication. I often wonder if his chronic back pain is the beginning of ankylosing spondylitis.

  My youngest son is very thin and tall. He is the only one of my children who has no knee problems. He doesn't complain with back pain either. He experienced a lot of acid reflux when he was a young child. From the age of 4 until about 10 years old he was prescribed medication for the acid reflux. He also has battled eczema from birth through his whole life. His eczema has been so bad that he has lost fingernails where effected. We try to be diligent to keep him away from soaps, sanitizers, etc that make his eczema worse.

  My children are the most precious gifts I have. I would feel terrible if I passed on my diseases to them. If they do end up with AS, I hope I can be a support system for them. I hope I will be knowledgeable enough to help them. I hope research and medications will be far advanced before they might face AS.

  In closing, I encourage you to spread awareness of our disease. I hope if you are financially able, you will donate to ankylosing spondylitis research. Do these things not only for our futures, but for the futures of our children and generations to come.

  Gentle hugs friends. May it be a pain free week.

Ankylosing Spondylitis Prognosis - What It Means To Me

  Yesterday I received an arthritis magazine I subscribe to in the mail. I began my subscription years ago, when I was first diagnosed. Back then I looked anywhere I could to get more information on ankylosing spondylitis. I found limited amounts even on the web.
 

   Eventually, I discontinued my magazine subscription for a period of time. This was mainly due to the magazine not having much information pertinent to my disease. At that time, it's articles were more focused on rheumatoid arthritis and psoriatic arthritis. However, my rheumatologist office usually has waiting room copies of this particular magazine. I would peruse it while waiting, I began to see more articles including AS. So I made the decision to resubscribe. It has some very informative articles that include ankylosing spondylitis. I am so pleased that newly diagnosed AS patients will have options for information that those of us diagnosed several years ago did not have.

  The article I was reading last night spoke to the likely factors indicating if your disease will be mild or severe. It covered three inflammatory arthritis - Rheumatoid, Psoriatic, and Ankylosing Spondylitis. It also had indicators for osteoarthritis in a separate footbar.

Ankylosing Spondylitis likely milder disease prognosis:

  • female sex
  • absence of hip arthritis or dactylitis (so-called "sausage" fingers or toes)
Ankylosing Spondylitis likely more severe disease prognosis:
  • male sex 
  • early age at disease onset
  • early development of hip arthritis
  • high sed rate
  • dactylitis
  While the article goes on to state that these are not set in stone, they are indicators. It also states if you experience the more severe indicators you should do all you can to live a healthy lifestyle. In my opinion, that should be your approach in either scenario.

  My personal life with AS has a majority of these indicators. I am female, have hip arthritis, have dactylitis, and consistently have a high sed rate. My prior sed rate had lessened to 41, which is still high, but better than 51 from three months prior. 

  So what am I going to do with this information? I am going to use it to help continue my motivation for exercise, weight loss, and healthier food choices. I hope each of you will use it to motivate you as well.

   I sign off today feeling thankful for the spreading awareness of our disease. May my blog also help spread awareness. May it be a source of information for the newly diagnosed, as well as for us that's been in this fight for a while now.


Footnote: Sighting article notes from " Arthritis Today"  March-April 2018 Page 28 What To Expect From Your Arthritis by Mary Anne Dunkin




Movement Is The Key - AS & RA Warriors

  Before I was diagnosed with Ankylosing Spondylitis, I had never heard of it. I knew something terrible was going on with my body, but I assumed it was Rheumatoid Arthritis. When I was a small child, my maternal grandmother was diagnosed with RA. We visited her every Sunday. I remember her crying in pain during some of those weekly visits. I also remember her recounting her weekly struggles and doctor appointments. As a child hearing these tales of pain in her shoulders or hands, I could not begin to imagine how your body could hurt so severely. My grandmother was fortunate in the fact that she was able to be active right up until her passing at age 84 years. I believe her body and pain would have been immensely worse if she had not been able to stay active.
  Following in my grandmother’s footsteps is my mother. Mom had episodes of significant pain during her 40s, 50s, and 60s. However, my mom is one of those people who is never still. She is constantly doing something. She helped my dad on our farm until the 1990s when my father passed away and we stopped operating the farm. During the farming years, my mother worked harder than some men. Neighbors frequently spoke of how hard my mother worked. The producers of our farm's income were cattle and tobacco. She helped put up hay, the almost extinct way of rectangular bales that you actually lift by hand. She’d throw those bales up on the wagon faster than anyone. Then carry them from the wagon and stack them in the barn with dad. She also helped dad in the tobacco patch. She’d hoe a whole patch of tobacco. When the tobacco was full grown, she’d cut off each plant and hand them to dad to spear on a stick. If you know about growing tobacco you know being the cutter means bending, lifting, and twisting. Those tobacco plants are pretty heavy, considering they are about 6 feet tall and still green with a lot of moisture in them. Some people would leave there speared tobacco in the field until the sun dried it, which made it much lighter to lift and hang in a barn. My daddy didn’t think you got a nice, quality finished product doing it that way. Therefore, he insisted we load it on a wagon, haul it to the barn, and hang it on tier poles in the barn as soon as we got the entire patch speared. My mom carried those heavy tobacco sticks which usually had about 5 plants on each stick. My dad would climb the tier poles in the barn and mom would hand those straight up while standing on the wagon to dad. Plus my mother worked a full time job, as well as farming. My mom was a power horse!
  During her early 70s she began experiencing more frequent pain. Her bounce back time was more significant as well. A day came when she had severe pain in her eye and head. Terrified, we went to an eye doctor. He said she had inflammation in her eye and prescribed steroid drops. However, the steroid drops didn’t help, she ended up in the emergency room. An MRI showed her optic nerve was highly inflamed. The emergency room doctor asked mom questions about her joints and other body aches. The line of questioning seemed odd to us since we were there for her eye pain. The ER doctor called a eye specialist in a neighboring town and had us drive immediately to that specialist. The specialist gave mom a high dose injection of steroids and he also questioned her about joint pain. After talking to mom,he said he would like to refer her to a rheumatologist because her symptoms could be a sign of an autoimmune disease. The rheumatologist was fabulous. She ran tests and sat talking with mom for about an hour. Mom was diagnosed with Rheumatoid Arthritis finally after all those years.
  Based on my family history, I assumed I also had RA but to my surprise it wasn’t. My doctor said RA and AS are both autoimmune diseases. Somehow I ended up with this weird named disease, Ankylosing Spondylitis. She said having one autoimmune disease increases your chance of having another. So who's to say what my mother's or my future may hold in store for us. I pray my children do not carry on the family history of autoimmune, rheumatic diseases.
  In closing, I hope everyone can see how movement helps keep us sufferers mobile. We’ll have our down days, but continue to get up and fight. My mom just celebrated her 82nd birthday. She’s still a “go-getter”. She inspires me daily.
  Gentle hugs friends!

My Weekly Weight Reflection - February 19, 2018

This week's weight loss is a disappointment. I don't want to make up excuses for my failure. I prefer to reflect and determine the steps I need to change.

  Where I went wrong.....

  1. I did not drink much water at all this past week. That truly was my greatest downfall.
  2. I gave into my cravings. Some days they seem overwhelming.
  3. I did not follow through with my plan to exercise more.
  4. I was more depressed during the past week.
  I could easily beat myself up for this failure. I don't think that would benefit me, in either weight loss nor my depression. I choose to move forward this week and just keep trying my best. I assume others have faced these types of set backs, if you have any tips, please share in the comments.

 This upcoming week I plan to......

  1. Drink more water!
  2. Exercise more!
  3. Increase protein!
  4. Snack on healthy foods!
  Ok, here's my shame.....

Last week's weight: 220 lbs
Current weight:       222 lbs

Hoping you each have a pain free, joyous week. Hugs to each of you!

Ankylosing Spondylitis Has Robbed Me Of Being Desirable

  Happy Sunday! It's a gorgeous, sunny day at my house. After weeks of snow and rain it feels so great to have sunshine pouring into our home.

  My goal for today is to go for a long walk on our local walking trail. I'm writing this while waiting for my husband to get ready to go with me. The exercise will be good for both of us.

  My husband had aortic valve and aortic root replacement 6 years ago. He has never returned to the same person he was before the surgery. He sleeps for hours and hours, sometimes all day. Unless I nag him, he'd spend all weekend in bed. I find myself longing for the "go-getter" he used to be. He was energetic, fun, and wanted to do things with me. He used to get me in the vehicle and we'd drive nowhere in particular. Sightseeing was our adventure. We'd camp, hike, and talk for hours. He also used to write me love letters, buy me flowers for no reason, and call me just to say "I love you". I miss those little things. When I ask why he doesn't do those things anymore, his response is "if you ask me to do it, I can't because it wouldn't be my idea". I suppose that makes sense to him. Three years ago all I asked for Valentine's Day was a love letter. I still haven't got one, as a matter of fact I haven't got anything. I know that sounds materialistic. I can see his love for me daily. The way he has taken care of me when I'm in pain with a flare of my AS, is amazing. He will help me put my clothes on when my body doesn't want to cooperate. I couldn't make it through this battle with Ankylosing Spondylitis without him. My husband is my rock.

  I guess my fear is he has took care of me so long that he may not see me as a woman. Maybe I'm just a patient fighting a disease that weakens me. Ankylosing Spondylitis and Scoliosis has deformed my body. Pain and medication side effects have made me twice the size of the woman he used to be attracted to. I know it's tiring to always be needed. I wish we could time travel back to before his surgery and before my AS issues. To have one more day of that free spirited, all consuming love and attraction would be my greatest desire.

  If you are in relationship, I hope you can achieve a separation of disease and desire. After 33 years of being in a relationship (almost 29 of those married), I think our lines have blurred. Maybe today I will attempt to bring our spark back. Hummm....this could be interesting!

  Have fun today friends! Gentle hugs to you!

Learning To Work At A Slower Pace With AS

Today I thought I'd share our videos about remodeling our son's bedroom. I posted earlier about trying to help my husband with this project. It was a slow process. Ankylosing Spondylitis is so unpredictable, one day I may feel like I can conquer the world but be bed ridden the next day. It has taught me to make flexible plans and just go with the flow.
(Pardon the horrible mess!)
The video below is an after remodel look.
(We still had a few things left to do when I filmed it. I hope to do another video later to show the crown moulding, closet completed, and the awesome gaming cabinet my husband made for our son.)


To follow our journey remodeling our mobile home, as well as restoring our vintage travel trailers, subscribe to our YouTube Channel.   Mobile Home & Vintage Camper Mom

I'm hoping to learn how to edit my videos, I was happy I got my video uploaded lol.
I'm so far behind on technology, it's a wonder I can turn a computer on! I have to ask my teenage son for assistance with everything online!

My Weight Loss Has Begun.... Now To Stay Motivated!

  I wanted to update you on my progress with my weight loss. I hope to post a weekly update. I think it will help keep me motivated. I'd love to hear ways you stay motivated. 
                                                              
                                                             EXERCISE:
  This past week the weather has been horrible so I didn't walk much. As anyone with ankylosing spondylitis knows there is a limitation on types of exercises we can do. I have tried more stretching this past week. I think when I can get outside and walk I will see more progress.


                                                             NUTRITION:
  I have monitored my carb intake and calories. I upped my protein intake this past week. It helps me feel full longer. I also increased my water intake significantly. Normally, I might drink a 16.9oz of water once or twice a week. I know...... not good, right? This past week I drank 3 or 4 bottles of water daily. At first it was difficult to drink that much water but as the week progressed my body craved it. I only had one sugary soda during the week. I feel really accomplished drinking that much water and not having a lot of soda. As an AS patient, who is prescribed methotrexate and other medications, I need to increase my water to flush the drugs from my body systems. I have been terrible at this. I hope this increase in water will benefit both my kidneys and liver. My goal for the upcoming week - no sodas. I also want to increase my vegetable intake.


                                                  DOWN TO THE NUMBERS:
  I am happy to say I weighed myself this morning and I am down 6lbs! 

Last Week's Weight..................226 lbs
Today's Weight ....................... 220 lbs


  Not a huge loss but I am still happy. Wishing each of you success in your weight loss journey.


  Hugs to you friends!

A New Prospective

  Hello friends. If you visit my blog you will see some changes. I was tired of my old theme.

  I don't know if it was only me, but I felt the look of it was tired and sad. My new background feels more upbeat and happy. I hope it makes you feel happy also.

  My daughter says she thinks I have Seasonal Affective Disease (SAD). When it's rainy and gloomy my mood is gloomy. I literally have no energy. I hurt more with my AS during those days. However, if the sunshine is flooding my home, I am so much more energetic and happy. I accomplish much more on sunny days. Of course ankylosing spondylitis is an inflammatory, arthritic disease so rainy, damp weather will cause us more suffering and pain. I don't know if I have SAD but I decided to add as much happiness and brightness to my days as possible.

  I carried this idea to my blog. Why not feel energetic, hopeful, and happy when reading a blog? I'm still tweaking some of the gadgets.

  Let me know what you think about it. I'm open to suggestion....

  Thanks!


The Deepest Pain Of All

  I'm wondering if you've ever felt the kind of pain that cuts you to your core. I'm not talking about Ankylosing Spondylitis pain. We deal with it in one form or another daily. I'm speaking of emotional pain. The hurtful pain that makes your heart ache. I've experienced some painful emotions in my 46 years but there are a few that stands out as the worst.

  Sometimes I wonder do the people who inflected those wounds know how deeply they hurt me. I think some probably realize, but then there are others who may be oblivious. How can someone hurt you deeply and not realize? I think they must be very self absorbed individuals. I try to always be respectful of other's feelings. However, being human means sometimes we all make mistakes. Sometimes you might say something that was meant one way but taken a complete different way. I have worried when I think I might have offended someone. Literally, I can't sleep from worrying about it. My grandfather passed away before I was born, but I've been told by many people that they never heard him say a bad word about anyone and was always willing to help people. I strive to life my life in such a manner as to leave such a good testimony behind when I die. 

  Thinking back to those deepest hurts brings tears to my eyes today. You know it was a deep hurt when years later you can sit down and still cry about it. One of those times involved someone very close to me. You think you know someone so well, you think they would lie down their life before hurting you. I don't know if this person did what they did thinking it would be hidden from me or what their thought process was. I will never get over that hurt. Not to be dramatic but I don't think a physical cut could have hurt any worse. I've moved forward but that pain holds me back in some ways. I'm not sure they can understand what they took from me. My sense of safety was shaken. 

  Then there's the hurt of giving your best to something and hearing it wasn't good enough. I pushed myself beyond my limitations. I was proud of myself. I felt good, accomplished. In hearing peoples comments later, I realized they thought I could've did better. I live with knowing I gave it my all but the pain of comments still hurt. This happened years ago, but I continue to push myself and do my best. As long as I know I've hit my full capabilities, I will be happy. I'm a bit of a perfectionist in some ways, I don't want anything done half way. I can drive people crazy in that sense, just ask my husband. haha!

  I hope if you haven't experienced this deep hurt, that you never do. If you have been hurt deeply, I hope you can move forward and not let it scar you forever. Dealing with an autoimmune disease has us fighting our own bodies. If we allow our emotional pain to fester, our body will suffer more. Here's hoping you can find a way to deal with your emotional pains.

  Gentle hugs until next time!

A View Of Self Injecting A Syringe

  Now that I have been taking Cosentyx syringe injections for a few months, I thought I'd share my experience.

  I began with a loading dose of one injection weekly for five weeks. My rheumatologist supplied me with five Cosentyx auto-inject pens. I've blogged about my euphoria feelings during my loading doses. I had energy like I hadn't experienced in years. I felt like the old me, the one who could function without pain. I won't go into all of that since you can read it in my earlier posts. I will say my experience with the auto-inject Cosentyx pen was much better than with the Enbrel and Humira pens. In this post, I want to focus on the syringes, in case anyone is facing injecting for the first time.

  Once my insurance approved the medicine, my home delivery pharmacy shipped my medicine. To my surprise, they sent me syringes instead of auto-inject pens. I never open my box until the day of my shot, so I didn't realize until it was too late.

  I have always used the automatic pens, never syringes. Years ago, I told my diabetic mother in law, I could never stick a needle in my stomach. Never, say never! Lesson learned. I was needing my medicine and all I had was a syringe of it. Thankfully my oldest son, who is a first responder, did my first syringe injection. My second monthly injection, I decided I had stabbed myself with that auto-inject pen for so many years, surely I was tough enough to do my own syringe injection. I cleaned my chosen spot with alcohol wipes, removed the lid from the needle. I lowered the syringe toward my stomach, pointing the needle at my sanitized spot. The closer the needle got to my skin, the more my hand shaked. My husband laughed at my uncontrollable, shaking hand. He offered to inject for me, but I was determined. I took a deep breath and with the needle trembling like a tiny earthquake, I stuck it in my belly. It was hard to push the needle through the first layer of skin and tissue, but once it got through that "tough" part, it just slid like their was nothing inside my belly. That was the weirdest feeling ever, I will never forget it. I don't know if that is just a feeling you get doing self injection or if nurses feel that hollowness when they inject needles in patients. I must say that even with the shaking it did not burn as bad as those auto-inject pens. I have injected my third syringe as of this posting. This last injection was much easier. My hand didn't even shake. Although, after pulling the needle out I realized I was holding my breath. By next month I might be able to relax while injecting haha. In my honest opinion, I actually prefer the syringe. I don't miss the burning of the pens. I don't miss the way I always jumped when the pen clicked, even with expecting it! If given a choice, I would chose syringe every time.

  If you are facing injecting for the first time, I hope my post helps. I tried to explain what I was feeling, hopefully I didn't scare anyone. Just keep reminding yourself, you are tough. You can do this! You fight Ankylosing Spondylitis everyday. You are an AS warrior!

  I hope this is a pain free, enjoyable week for everyone.
  Gentle hugs friends.


How Can I Lose Weight and Lose The Shame

  I wrote, not too long ago, about I need to lose weight. As many of you know that is easier said than done. At my last rheumatologist appointment I was dreading stepping on the scales. This dread was compounded by my mom standing close enough to read the scale. My mother has not been kind about the fact that I weigh too much. In fact, she has had both my sister and I in tears many times.

  I hold my breath as I step on the scale, as if that will help me weigh less. The digital readout flips between a couple numbers and finally stops at my weight. I currently weigh more than I ever have in my life. Even more than during my pregnancies! 

  I wish I could blame it on medication side effects, but that would only be one component. Last year, I was changed from Humira to Enbrel and then from Enbrel to Cosentyx. I also had flares last year that were treated with steroids. 

  I know a lot of my habits were the culprit. I have never been a healthy eater. From being anorexic as a teenager and weighing barely 100 lbs as a senior in high school to now being obese. My intention is to eat healthier but after a few days or weeks I give up and return to my old eating habits. I crave salty food daily. I fight these cravings for a while but eventually give in to them. I'm not sure why salt is the focus of my cravings. 

  Lately, I haven't been exercising either. I love to walk on a local trail, but there were some muggings on the trail. My husband doesn't want me to walk alone on the trail anymore. I've tried to get him to accompany me but he has no interest in that. His response is he gets enough exercise at work. Although, he weighs more than ever as well, 196 lbs. When I mention that fact to him, he turns the conversation back to my weight problem. I leave with the impression that as long as he weighs less than me, he thinks he's fine. He is great at giving advice but never follows it himself. During our weight/exercise talks I usually end up with hurt feelings. Sometimes it's just not worth it.

  I'm going to the grocery store this morning. I'm going to try to buy healthy choices.

  I need motivation!
  I need exercise!
  I need focus!
  I need to lose 100 lbs!
  
 I'm putting this out there as a I usually try to hide it from everyone.... I weigh 226 lbs. That's even hard to type! I'm tired of hiding behind people in pictures because I am ashamed of my body. I'm tired of trying to hide the size tags when I buy new clothes. I'm tired of buying a couple sizes bigger so it won't cling to my stomach. I'm tired of being ashamed to take a selfie because of my fat double chin. I'm tired of being embarrassed to attend events at my children's schools because of my weight. I'm tired of not attending my husband's Christmas work dinner because I'm ashamed of my body. I'm tired of feeling my husband is ashamed of my body. I'm tired of hearing the mean comments.

  Hopefully I can post weekly updates. Maybe you guys can help me stay on track. Any ideas? Tips?

  Thanks my friends. May you have a pain free week without AS rearing it's ugly self. 

  Gentle hugs AS warriors!