Spicebush Tea Trial On My AS, OA, Fibro, and Neuropathy

  My husband has been studying herbal medicine. He believes the medicine the Indians and settlers used is the key to treating today's health issues.

  I am not certain of my position on the subject, but I am willing to be open minded. 

  Today he and my son collected spicebush twigs, leaves, and berries. They made a tea with these. It smells amazing. Our house smells amazing after steeping the tea.

  I did some research, which I will provide a link to below. This article is very informative and interesting. Siteing actual cases of using Spicebush.

  I'll update after we do our trial use of the Spicebush tea.

  Gentle hugs, friends. Comment and subscribe at the top of my main page.

The Fear of Medication Changes in AS and Neuropathy

  Last night as I lay in bed trying to get to sleep, my feet were burning and my ankles ached. I have Peripheral Neuropathy. My neurologist prescribed Gabapentin about 3 years ago and has increased my dosage as needed. 

  I had an appointment with my neurologist last month. I told her my neuropathy symptoms are worsening, keeping me awake at night and causing me to fall more frequently. The doctor explained she could increase my Gabapentin, but the side effects would also increase. My main side effect being sleepiness during the daytime. If that side effect would hit me at nighttime it would be the perfect solution to my problems. Alas, no luck there.
After telling her I certainly didn't need more daytime sleepiness, she said Lyrica might be an option. Of course, I have saw the advertisements on television for Lyrica. My doctor told me I would need to discontinue the Gabapentin before beginning Lyrica. Therein lies the problem, my Gabapentin also helps control my pain from my Ankylosing Spondylitis. The thought of stopping my Gabapentin possibly sending me into a flare is terrifying. I told my neurologist I would like to take time to think about my options. It's been a month and I still haven't made a decision.
  I feel like I'm in a no win situation. My rheumatologist is considering changing my Enbrel injections to Cosentyx because my inflammation markers are high. The Enbrel does not seem to be working for my Ankylosing Spondylitis. 

  Should I change both my neuropathy and AS medication at the same time? Is it more sensible to change only one medication and monitor it's effects before changing the other?

  I also have the diagnosis of Fibromyalgia, possibly the Lyrica would make a difference in my pain levels. I know it is one of the most prescribed medications to treat Fibromyalgia. I have a cousin who also has Fibro, she tried the Lyrica. She had some of the worst side effects. At one point, she was suicidal. That would always be in the back of my mind if I choose to try Lyrica. With knowing that side effect, could I identify suicidal tendencies before they became an issue for me? 

  So many things to consider! I appreciate being able to share my thoughts on this blog. If any of you have experience with these medications, please comment. I'd love to have "hands on" experiences shared to help me make a decision.

Gentle hugs to each of you!
Fighting Ankylosing Spondylitis, Peripheal Neuropathy,
Osteoarthritis, Scoliosis, and Fibromyalgia daily.

👍If you enjoy reading my blog please comment and click subscribe at the top of my main page. I'm not a professional, just a regular person trying to make sense of my crazy life.

 When I am in the sun my arm gets a raised, hot to touch, red rash that burns. Does anyone experience this? Is this related to ankylosing spondylitis? Comments welcomed. Please click follow to join me.

Scoliosis - The Culprit Before Ankylosing Spondylitis

 I have been dedicating my blog to ankylosing spondylitis awareness, but I have several other diagnoses as well. I believe while AS is my main fight, these other diseases aren't making it easy for me to keep fighting. Today I want to share one of the other enemies of my body.

  It all began in my childhood. I can remember as an 8 year old crying with back pain. My aunt babysat me daily while my parents worked. She was an older lady, the kind who tells all those intriguing tales of the good ole days. My aunt was born in 1918, she was in her 60s when I was a child. I guess I equated her to a grandmother, since a majority of my grandparents passed away before I was born.  My aunt told my parents I needed to see a doctor about my severe back pain. Mom and dad were tobacco farmers, with a few cattle, plus they worked on a job 40 hours a week. They stayed so busy they really didn't see me very much. I mean I slept in their home, but I was dropped at my aunt's house when I wasn't in school. They didn't really see me during the most painful episodes.

  My aunt would massage my back when I was screaming and crying in pain. She would have me lay flat on the floor and press my lower back into the floor. Little be knownst to her or me, that was one of the exercises I would eventually be prescribed by my physical therapist. 

  Finally when I began my 4th grade year, my school had a scoliosis check. I was shocked and scared when the parent volunteers pulled me aside and asked a health department nurse to take a closer look at my spine. I remember being embarrassed and wanted to go back to class with my friends. However, the health department nurse had a list of questions to ask me first. She asked if my back hurt, how long it'd been hurting, and what my parents phone number was. Of course with my parents either working at their place of employment or on our farm, it was no easy task to get in contact with them. I went about my days aching but the fear of that scoliosis check day subsided eventually.

  In what seemed like months to a child, a letter was delivered to my parents urging them to take me to a local orthopedic clinic. As a child I was terrified by doctors so I begged for them to ignore the suggestion. After receiving that letter though it convinced them my aunt had not been overreacting. I truly had something going on with my spine. So an appointment was scheduled.

  The day arrived and my mom took me to the orthopedic clinic. There were kids in wheelchairs, on crutchs, and wearing various types of braces. As a child this was a very scary sight for me since I didn't know how scoliosis was treated.

  The nurse called me to come back to the exam room. Terrified, I just wanted to go home, even if I had to cry in pain every day. When the doctor entered the room, the first thing I see if a goofy necktie. This doctor was unlike any doctor I had ever met. He joked with me and sat down to chat. This doctor had the very best bed side manner for dealing with children. Later after I relaxed, he began asking about my back pain. He explained they were going to do xrays and what I could expect during that.

  After the doctor looked at my xrays, he told me I have two curves. One is more severe than the other. He recommended fitting me with a custom made back brace. The brace was from just below my hips to under my breasts. It had velcro straps all the way up the back. I always assumed that was to deter me from removing it myself. Sneaky! He informed me I will need to wear this 23 hours a day until I stop growing. Little did I realize that meant until I was 17 years old.

  The brace did help with my back pain to an extent. Although, we did not have air conditioning in our house or vehicle so summers were a misery in that brace. Mom would sprinkle cornstarch powders on me to help with the heat rashes I developed. I spent a lot of time sitting in front of a portable fan.

  Once I stopped growing at age 17, I was free from wearing the brace. Surprisingly, some days I wish I still had that back brace. As embarrassing and hot as it was, it held my back exactly where it needed to be. Over the years when I had worsening back pain I attributed it to my scoliosis, I didn't realize something else could be the culprit. At age 43, I was diagnosed with ankylosing spondylitis. Sometimes I wonder if my childhood symptoms could have been the beginning of my ankylosing spondylitis.

  My point is if you have continuing pain talk to your doctors. Don't just assume what's going on, ask questions. You know your body better than anyone, be your own advocate.

Clicking Along With My Cane

  Click....click....click....  This is the sound that followed me while walking through the mall last Friday. At first I didn't even notice the sound. I was using my cane which I hadn't used in a couple months.

  Let me back up and start from the beginning.

  My husband and I took a small vacation last week. We left on our adventure on Wednesday morning. It was a 4.5 hour drive. By the time we arrived at the campground, I was completely wiped out. Of course, we had to go purchase groceries for our stay, so no rest for the weary. I tried to rush through the grocery store but being in a store you're unfamiliar with can be frustrating. Why is every WalMart laid out different? They're about as confusing to navigate through them, as it is when they change their Great Value labels right after I became accustomed to the old label.

  After we finished grocery shopping and returned to our cabin, we tried relaxing. By that time I am hurting in multiple areas. Both ankles are swelling and my feet are burning. My knees, shoulder blades, and neck are extremely painful. Even my eyes feel like they're strained! My husband and I decide to go to bed early and are hopeful tomorrow will be a better day.

  Thursday morning comes with a sense of peace. We can truly enjoy the day today. At least that was our hope. 

  We decide to go look through some local antique stores. We both enjoy looking at all the antiques. It's a challenge to see who finds something that reminds them of their childhood. As I walk through the antique store, I begin to wear down. First my neck and shoulders begin aching. That deep throbbing pain, where you know if you don't lay down, you're going to be in unbearable pain soon. My ankles are tender from the swelling of the day before and feel as if the bones may break.

  I struggle to keep moving. My husband has went off in another section of the store and I don't have my cell to call him. I slowly look at items, thinking if I just stop for a moment the intensity of the pain will subside. As I fight to look normal to other customers in the store, I am reminded how much ankylosing spondylitis has changed my life. I am 46 years old and I can't walk through this store without excruciating pain. What a different life this is as compared to my childhood dreams of my adult life.

  I don't want to ask my husband to leave because of my pain, this is his vacation also. I want him to enjoy himself. He does so much for me and our kids. He deserves so much more. I battle my own body until my husband comes to find me because he is ready to leave. I try to hide my pain from my husband, I don't want him to worry.

  At the cabin, I take a hot shower and my husband rubs my ankles. After a pain pill and a muscle relaxer, I sleep soundly.

  Friday morning, we sleep in a bit and then decide to check out the local mall. When we get out of the car my husband hands me my cane. I guess I'm not as good at hiding my pain as I thought! As I walk through the mall I begin to listen to the click, click sound of my cane hitting the floor. What a blessing to be able to walk, even if it is with a wore out, old cane. I may be beat down at times by ankylosing spondylitis, but I will continue to keep clicking along. It's my new life.

I Will Make It Through Today! (Did I Convince You?)

  I am really not looking forward to today.....

  Anyone suffering from AS knows when we overdo ourselves, we end up hurting more and dealing with extreme fatigue. I have a feeling it's going to be one of those days.

  My husband and I are leaving in the morning for a much needed vacation. Today I have to pack, shop for groceries for my sons, clean the house, and take my mom to urgent care for a possible UTI. After all these years you would think I would know better than to procrastinate until the last day. Oh well, I'll tackle one thing at a time.

  If I don't make it to the grocery store it'll be okay, the boys will survive. My oldest son already suggested I could leave money and they'd eat out each night! I don't see that happening haha.

  It is so nice that our kids are old enough to take care of themselves, the house, and the dog. Plus they will keep an eye on my mom also. I absolutely loved having little kids, one of my greatest joys, but having the freedom to take a vacation is wonderful as well.

  Our daughter got married in July. It was an amazing wedding. I am blessed beyond measure to have such a great son in law. My daughter and he had dated for 5 years exact on their wedding day. They had what I consider a huge wedding, 100-150 people. Of course, I had at most 15-20 people at mine. Big difference!! I know any of you that have helped plan a daughter's wedding can understand how it consumes your whole life. I made it through all the festivities flare free, but the couple months following have been unforgiving. I'm thankful ankylosing spondylitis didn't rear it's ugly head until after the wedding.

  My husband and I are taking this short vacation to relax, reflect, and reconnect. After a very busy year we need it.  If I can make it through today, tomorrow we'll be on our way!

  Hugs to all you mommies and daddies fighting AS. May it be a pain free day!

Strangeness Follows Me

  As I face the day ahead I like to start out with a smile. Things seem to go better when I smile.

  Therefore, I thought I'd share a little laugh with you. My life can be a bit strange and I tend to have strange experiences. An example would be my former job where I was a worm counter. Yes, you heard right I counted nightcrawlers, mealworms, etc all day for 3 years. I'll explain that further in a later post. Somehow strangeness just finds me....lol.

  Today I want to tell you about my odd Walmart experience. Last winter I was at Walmart with my mom. We always have a weekly Walmart trip together. On this certain day, my mom went on over to get groceries while I went to the pharmacy. As an ankylosing spondylitis patient I spend a good deal of time at my Walmart pharmacy. That day I chat with the pharmacy employees, pick up my meds, and head over toward groceries.

  I am taking my time looking at this and that. I cut down a less crowded aisle near ladies pajamas. That was mistake #1. I hear behind me someone walking quickly. It was one of those things where you're in your own thoughts but suddenly aware of another person. Mistake #2. I thought, "man, I need to get out of their way". It sounded like they were on a mission. I didn't want to delay them.

  After pushing my buggy over to the side of the aisle, I look at some leggings. I'm thinking this fast walking person will pass me and I'll get back on my way. Yep, that was mistake #3. That was not to be the case though, as the steps stop right beside me.

  I turn to see a woman probably in her 30s. As I looked her way she says "hi, you look so pretty today". I am somewhat taken back because I have no idea who this woman is. She seems genuinely happy to see me and she is complimenting me. Mistake #4. Maybe I do know her from somewhere or she has mistaken me for someone else. I respond thank you. She said she had been chasing me to tell me how pretty I look. At this point I'm getting a weird vibe. lol

  In my mind, I am recalling the pharmacy tech telling me to guard my prescriptions. They have had some incidents of individuals snatching bags of prescriptions out of people's cart. So I am on high alert now. I take my free hand, wrap it through my purse handles and grasp my prescription bag in my hand. I think I am so stealthy, no one is going to steal from me.

  The lady continues talking, although I kind of zone out. That's mistake #5 if you're keeping count! She said something about it being really cold outside. I reply accordingly. All of a sudden this lady pushes her hand under my armpit. I am speechless! She actually rammed her hand from behind me under my arm pit! She says "it's really warm in there". What the heck is going on????? I jerk away from her and start walking. She follows me. I am thinking, "holy cow! Run, run, run"! She mutters something about needing to go find her mommy and daddy. Mind you this is a 30 something year old woman.

  I take off, zipping down laundry detergent aisle, past end caps of chips, and the cooler of eggs. I finally see my mom at the end of the water aisle, I rush down to her. I know the irony is I'm 46 and practically running to my mom! Haha

  Mom asks where I have been so long, she thought I got lost or something. I tell her it was definitely a very strange situation that held me up. She looks confused. I let her know I will tell her all about it later in the car.

  By far that is my weirdest Walmart experience! Thanks ankylosing spondylitis for making me a slow walker and a person who tries to avoid crowds. Moral of this story, don't cut through those deserted back aisles without your momma and always were deodorant!  LOL

  Have a spectacular monday friends!

One Good Day Equals A Bad Day

  Yesterday my mom called to chat. She had been to visit my sister. Mom mentioned my sister was cleaning her bathroom walls. Which got me to thinking, I haven't washed my bathroom walls in such a long time I don't even remember it.

  My clean freak of a mom would croak if she knew that. However, when I was employed I just didn't have the energy to do much housework. Basically I came home, fixed my kids a quick bite to eat, took a shower, and went straight to bed. I typically was in bed by 8 pm. I know that is crazy early but I had to be up every morning at 4:55 a.m. for work. Plus as most of you with anklosing spondylitis can relate, I had some nights of rolling and turning. Hip pain, rib pain, neck pain, and burning feet are my worst nighttime AS visitors. I wish I could be one of you super woman who work a job, have a spotless house, and are moms. I applaud each of you. I have many times felt such disappointment in myself because I can't keep it all up. My family deserves so much more than I can give most days. Ankylosing Spondylitis doesn't care how much it costs me in self worth. No wonder we deal with depression and anxiety.

  Back to my bathroom walls....I took all my pictures down and moved everything to the hallway. I got some hot water with Pine Sol and I washed down every wall. I am almost ashamed to tell you how filthy that water was when I emptied it. I had no idea my walls were that dirty. They looked clean or so I thought. Haha maybe I just don't see what I want to avoid! Cleaning the walls boosted my mood, so I tried to scrub my bathtub. That entails me getting on my knees by the tub and leaning in to scrub it. I don't know if any of you have arthritis in your knees, I have osteoarthritis in both of mine. Let me tell you, after a minute the shooting pains in my knees were so bad I had to drag myself up with the help of my toilet! Not a pretty sight! I know my husband has just sat down in the living room so I yelled to ask if he could possibly scrub the tub for me. To my surprise, my teenage son says he'll do it for me. He did an awesome job. I love Magic Erasers to scrub my tub. My son practically wore one down to a shred cleaning that bathtub. Oh, and just to clarify I do regularly clean my toilet, sink, tub, and floor. It was only the walls that were forgotten.

  After my son completed cleaning the tub, I proceeded to clean all the fixtures. I hung a new shower curtain. I mopped the floors and put down a new rug I bought at Kirkland's. It is thick and absolutely the best bathroom rug I've ever had. It feels like you're walking on clouds. Kirkland's is a favorite store of mine. The rug I bought was on clearance for $14.97. Worth every penny! I always check out the clearance section at every store I visit. Great deals waiting to be had. I ended Saturday feeling so accomplished and satisfied.

  This morning however is a very different story. I woke about 8 a.m. because I needed to do some cooking for our church homecoming. Oh, my goodness! Getting out of bed was horrible. My legs from my knees down feel like the bone is breaking with each step. My lower back is on fire. My shoulder blades have knifes going through them and my neck is very loudly crunching when I turn my head. So much for feeling accomplished. I make it into my very clean smelling bathroom. That wonderfully plush rug is the only thing that feels good to me right then.

  I have my morning handful of assorted medicines with a cup of coffee. Mom calls to ask if I'm getting my cooking done for church. I begin to explain my body aches but mom isn't one to dish out much sympathy. She tells me how bad she feels but she's already completed her 4 or 5 dishes she is taking. Don't take this wrong. I love my momma dearly. She is so good to me and my kids. She will do anything she can to help us. She has even offered to help clean my house. Mom has rheumatoid arthritis, OA, gout, and pseudogout. Mom is my hero, she won't let her illnesses break her. She is 81 years old and most days gets around better than I do. I think because she is such a strong force against her issues she just doesn't want to hear my complaints. I even feel bad for complaining to her about my aches and pains. However it is hard to not be able to vent or have someone's shoulder to lean on every once in a while. I guess that's how I ended up here, talking to you guys!

  I guarantee many of you know exactly what I mean when I say one good day = a bad day. In the end I think it was worth it. I know when this ache leaves my bathroom will be a source of pride because I did it! (With a teenagers help haha)

  In case you're wondering I did get my food items ready for church. My husband lended a hand with that.

  Ankylosing Spondylitis - a give and take relationship! It gave me enough energy to clean but then it took all my energy today. What a crazy life!!

  Hugs AS warriors!

Couponing To Help Our Family

   I'm sure a lot of you will relate in trying to save your family money at the grocery store.

   Due to the progression of my ankylosing spondylitis I had to give my job up in December 2016. That was a very emotional decision for me. I may write about it at a later date. This post is about couponing since we are a one income family at this point.

   I tried subscribing to our local newspaper in order to clip Sunday coupons. I found this to not be cost effective. Some weeks I only used a couple of the coupons, paying $2 per paper was a losing proposition. I canceled my subscription after 2 months. Of course that was not as easy as it sounds, the newspaper office called constantly offering me better rates. At one point I might have restarted my subscription but after being called 4-5 times a day, I said forget it. Why doesn't telemarketers report the consumer said "no" and stop calling?

  Back to my subject!  ;)

  I found a wonderful site www.passionforsavings.com This site has helped me so much in my journey to save money. The lady posts all the best deals each week. I highly recommend starting your couponing on that site. On the site there is a link to coupons.com where you can clip and print coupons to use at your local stores. Best of all it is free!

  I was super excited the other day, I found an amazing deal on Purex Laundry Detergent.
I printed a $2 off 2 bottles of Purex from coupons.com (through passionforsavings.com)
I am a member of Saving Star, a rebate type site. They had $4 rebate when you spend $15 on Purex Laundry Detergent. Then to my surprise my local WalMart had sticky coupons on the Purex bottles for buy 2 get 1 free.

I paid $6.97 x 3bottles = $20.91
$20.91 - $2 coupon.com = $18.91
$18.91 - $4 Saving Star rebate =$14.91
$14.91 - $6.97 Buy2 get 1 free sticky coupon = $7.94

If I divide $7.94 by 3 I actually ended up paying $2.65 per bottle. Now that's a huge savings on my family budget. One thing we always have tons of is dirty laundry lol. I shouldn't need to buy detergent for quite a while.

  I find myself zooming in on coupons since I began this journey. I am always on the lookout at our stores. Sometimes people in my area clip coupons and if it's something they don't need, they leave the coupon on the shelf. It a pleasant surprise.

  One more tidbit because I know I'm dragging on and on. Sorry!
When I began couponing I shopped based on the coupons I had in hand. This ended with me having items I typically wouldn't buy. Now I get coupons only for things we normally use. I know that may sound confusing but it works best for our situation.

  Couponing is probably a strange subject for a blog about ankylosing spondylitis. Couponing gives me a sense of purpose, contributing to our household. AS may prevent me from employment but I win in the end when I keep our house stocked.

  Ankylosing Spondylitis may slow me down but I will fight it every step of the way!

Ankylosing Spondylitis Will Not Win

Some days AS tries to get me down, but I always  remember this saying. 

Is Ankylosing Spondylitis Even Real Words

    Finally after years of joint aches, inflammation, fatigue, and chronic pain I had an answer. But what the heck did they say I have? I sit silently taking it all in, trying to focus on what I'm being told. To be honest, I don't think I heard a fourth of what the NP told me after that strange sounding name of the disease. Here I am with an answer, THE answer. Is it wrong to feel relief? Happiness? How can I be happy, I just learned I have some weird sounding disease. Yet the flood of relief is overwhelming.

     I think I may be taking this news oddly compared to other sufferers. Sitting in that little exam room all by myself, I have learned the pain is legitimate. I have suffered this so long without answers at some point I began to wonder is it all in my head. Is what I'm feeling real? I certainly know I hurt but could my mind be controlling all of this pain. I have told the long list of doctors what I experience. Some of them seem to listen and have a genuine concern, but on the flip side is those who look at you like "another pain pill seeker". Until 2014 I had no medical insurance, which I believe adds to the stigma because they cannot understand the fact that I have suffered for years without seeking a specialist. If they had cared to listen I could have explained but you can't explain something to someone who doesn't want to hear. 

      At some point, I hear the NP tell me it is a lifelong, debilitating disease. Wait, lifelong and debilitating? What exactly does lifelong, debilitating mean? In what seemed like time standing still but in reality was at most a minute, my mind thinks death before my kids are grown. I see an image in my mind of me in a wheelchair, dependent on my family. I assume the NP could see the fear in my face. She slowed down considerably and explained what these terrifying words meant. My disease will never be cured. It will be my companion for the rest of my life. This strange sounding disease will not be a gentle companion, it will continue eroding, fusing, and trying to destroy my body. It is an autoimmune disease. Basically my immune system sees my own body as a foreign invader, my immune system decides it will destroy anything that isn't "me". If only I could open my immune system's blinders and say, "hey, that's my spine, my hips, it's all me!" There is a battle going on inside me. No wonder the fatigue can knock me out for days at a time. 

     My NP says the rheumatolgist recommend I begin methotrexate immediately. Take 6 methotrexate pills once weekly. Pick a day. Okay, I pick Sunday. She says every Sunday night take 6 of these pills all at once. What is methotrexate hits my lips, but the NP is already explaining. Methotrexate is a chemotherapy drug used in treating my type disease. I am in shock at this point, I mean the serious has been put in seriousness. I have a disease so formidable I need a medicine used in chemo. This is real. I am sitting here in this room and this is real. So, how long will I be taking this chemo drug? Indefinitely. Indefinitely? Will my hair fall out like others on chemo experience? Yes, but that is why they prescribe the use of folic acid in combination with methotrexate. Apparently some really smart person discovered folic acid pills taken daily can slow the hair loss. I have really thick hair so the NP thinks with the folic acid my hair loss may not be evident to other people. I think to myself, why am I sitting here worried about my hair? Shouldn't that be one of the last things I am thinking about? 

      The NP finishes all her dialogue and asks in a cheery voice, any questions? Umh.... I say I'm sure I will have many questions but the only one I can form right then was, "can you write that name down for me?" She states of all the questions she's been asked when delivering a diagnosis I am the first who has asked that question. That's the way my mind works haha. She graciously writes the name of the disease I am sharing my life with on a little piece of paper. I hold it in my hand like a treasure while saying my goodbyes, checking out at the front desk, and scheduling my next appointment. 

       I walk to my car where my 19 year old son is waiting to drive me home. I get in the car and we begin our drive in silence. My son casually asks what the doc said. I say she told me the name of the disease I have. My son asks what the name is, I start to cry. I said, "I can't even say it." Through tears I share what I can remember of the information. After calming down, I call my 22 year old daughter at college. She anxiously asked what the dr thought was going on with me. I said "I can't pronounce it but I'll spell it for you." I proceeded to spell the two words. My daughter asked me to repeat the spelling. After spelling it to her a few times she said something that made me laugh. The first laugh I had since finding out my diagnosis. 

      My daughter asked, "Mom, are you sure that's even real words? It sounds like made up words." 

      A-N-K-Y-L-O-S-I-N-G   S-P-O-N-D-Y-L-I-T-I-S

      It really is real words!