Fibro- My- What?

Hello my Fit For Fighting Fibro (F4) Tribe!!! Happy 2021! If you’re reading this you survived the craziness of 2020 and are surviving the pandemic.

It’s been 1571 days since February 10, 2017 the day my life drastically changed. 1571 days of guessing what pain I will have that day or that moment. 1571 days of not trusting this body I am in. I can hear “help me I’m stuck” or “I have fibro and I can’t get up”. If you read these and laughed you are my people!!! If you didn’t, please laugh it’s ok. I have learned to laugh and find something positive in every single day!

It has been so long since I’ve posted but I decided to post during this month because it’s Fibromyalgia Awareness Month. With that because I have Fibro and am not just posting about it, it has taken me all month for me to have time, my hands and fingers to work and no brain fog all at the same time. Today is the last day so here we go.

What is Fibromyalgia? Fibromyalgia is said to be “widespread pain” and is diagnosed by 18 trigger points and ruling out other illnesses.

Fibro is often masked or related to other conditions such as Lupus, Rheumatoid Arthritis, and Osteoarthritis. Doctors I have seen have said Fibromyalgia is based in the Central Nervous System (CNS).

I just googled it to make sure and wait for it……. google says the same thing. Guess all those copays were worth it. Well, maybe not. I mean they haven’t helped me. I guess they tried. Some of them anyway. Some of them were absolute whack jobs who I feel like got their degrees online. Also, telling a patient who is a 12 on a 10 pain schedule that the pain is not real and in their heads IS NOT OK!!! I digress. The CNS the part of the nervous system that contains the brain and the spinal cord. The brain sends and receives info to the body through the spinal cord. I have been told my CNS is out of whack. Really the doctor used those exact words. He then explained it as my body is sending out pain signals that aren’t really there to places where it should not go (arms, fingers, random part of leg, middle part of face, bottom of feet). Riddle me that! That is my FIBRO!! That is the answer to that riddle. Kind of sucks huh? Try having it.

Not only all of that but Fibro is called an invisible illness because you can’t actually see the problematic areas. But if you could see it here is what some areas would look like:

Update on life: I am 35 almost 36. The company I opened in June 2019 survived the pandemic and is doing well. I have learned so much being an entrepreneur and learn new things daily about: staffing (finding reliable people is so hard), billing (blah), accounting, social media presence, delegating and doing the job. It is truly a never-ending job. I published my first book. The title is “Maybe I Can Too” it explores the life of a young brownskin girl who is learning that hairstyles don’t limit the type of job you are capable of while watching her beautiful brownskin neighbor and being supported by her best friends. It is a story that is near and dear to my heart. Outside of experiencing a lot of the situations in the story, the story is a direct correlation to the world we live in today. From my point of view, often times women of color are found “qualified” or “less than qualified” based on our hair, the color of our skin or the way we speak. How wrong is that!! I used a ! instead of a ? because I am not asking, I know it is wrong. Extremely immeasurably wrong. If you are still reading I would assume I am preaching to the choir considering you obviously know I am a Black, brownskin, pro black (not anti anyone else) woman. If you are interested in my book please go to www.shanadawnbooks.com.

My family and friends are great!!!

I have come to a place in my life where I am having to let go. It seems in every area of my life I am having to relinquish control to feel better. While I have never considered myself a control freak I am realizing some of the traumatic experiences of life have left me desiring that control. Why? Because if I hold on to it, it doesn’t hurt. If I control the moving parts I can control the parts that hurt me. I can control the parts of me that get hurt. Make sense? Let’s dive in just a little.

My Business:

As some of you know I started my own company in June of 2019!! Despite the pandemic we are still going strong! I am so thankful for that!! My business and I have been managing a pretty dense caseload under some new policies in the middle of a pandemic, but, are navigating through them. This year has been very different from the rest. I have been challenged in many ways but I have grown so much as a employer. Whew!! Employing people is a hard job!! Finding people who care, can do the job, and have a heart and will to do the job is an even harder job. It seems not many people are looking for work these days. I have learned that not everyone has a good work ethic and knows how to respect an employer. Who knew? I sure didn’t. I digress. Despite the many many mountains we have climbed this year I do believe we handled them with grace and above all else we survived and are heading into our 3rd year in business. Three years where I have run a company that is helping kids. Three years of doing exactly what I love. Three years of knowing that I can help change the trajectory of a child’s future. Praise the Lord!!!

My Diet:

I am still vegetarian. I am working with a doctor to try and get my weight under control to see if it will help with the fibro. He recently put me on fish and veggies. Salmon and Tilapia to be exact. I hated it!!! Absolutely positively hated it! The smell was bad, the taste was bad and I begin to get nauseous at the sight of fish so I am back to not eating it. I am trying tofu for the first time. So if anyone has any great tofu recipes please let me know.

My body: In November I had plantar fasciitis symptoms in my left foot. I felt like it was from Fibro but am not sure. I think I blame everything on Fibro. I have not taught a fitness class since then. Wow I am just realizing it has been that long. No wonder my body is tight!! I am planning to start back teaching kids zumba this summer. EEEK I am so nervous. I have so much anxiety with making plans now because I don’t feel like I can depend on my body. So having to make plans straight up scares me. I have been erroring on the side of not making any because I dont want to let others down if I dont come. Oh no, I am becoming a hermit!!!! I’m a cute one but stilI… I have been having more painful days lately. It is also Spring and we have had quite a few rainy days. Some of you may feel like we haven’t but my body responds to a shift in the barometric pressure. That means whether it rains for 30 min or all day, my body feels the shift. All the rain mixed with the increase work load, my body has just been out of whack!!

Pool Therapy: I was down graded by my rheumatologist to the nurse practitioner. Let me tell you, that was the best thing that cold have happened. She is great! She listens. She listens. I could stop there but she also listens to understand and tries to actually help in a way the patient wants and not just from the text book. She gave me a prescription to pool therapy. It is great!!! I have been to pool therapy before and did find some relief this is completely different. I absolutely love it. I mean yall know how cheap I am, well insurance doesn’t cover this so I pay out of pocket twice a month to go. If I could go more I would. It sucks that health insurance doesn’t see a need for therapy outside of land. Pool therapy actually allows me to remember a body without pain. It’s nice. It’s definitely a feeling I want to have more often. I have learned many stretches and names of the body parts that are jacked how to start helping them. She says one of my hips is “stuck” and my sacrum is tilted, and that I hold my body. We talk a lot about me “letting go” and how much work I have to do to get there. It is a constant battle. Who knew letting go was so hard.

Chiropractor: I recently went to the chiropractor and on their board was “sacrum” and on their new patient sheet was “fibromyalgia” and they look like me (not a deal breaker if they dont but the fact that they do is AMAZING). They confirmed and could see everything my pool therapist said. They say when the spinal cord is out of whack then the entire body is. I definitely can’t argue with that 🤷🏾‍♀️. I have an actual appointment this week and I am very excited about it. I feel like this is another step to me having more good days!!!!

Symptoms: So as I said earlier I’ve been on the struggle bus. Most recently the biggest issue has been fatigue and lower back pain. I have only had 2-3 really really bad days where I wanted to go to the hospital and just lay there until they fixed me. I know from previous experience that they will do nothing but when my pain is at that level I am hopeful that they will try or at least give me something strong to make it bearable. My hands and fingers have been hurting also. It hurts to move them. So I am trying to be more conscious of how I use my energy and how tightly I hold things like the steering wheel and my phone. Practicing that “let go” or “release the hold” method. I try to preserve my energy and more complex body movements for work. Which means I am not working out as much as I would like to. I typically get off work and go to bed. On most days the pain rotates between my: upper and lower back, sacrum, butt muscles, hips, wrists, face, shoulders and feet. I have had very few allodynia (skin pain) days. With today being a holiday and me up and moving since 6am, working out and cooking I am worn out. The past few days my back has been burning. Tonight I am feeling a little nauseated. I get that way when my pain levels jump up.

Before I go, if you have prayer request please let me know because God is still God and He is still good!!! I have not been healed yet but my healing is absolutely coming! I wholeheartedly believe that.

I will keep you all updated on everything above and I encourage you to release things in your life that don’t serve you. Find the positive in every situation because there is one.

Peace, Love and Pain free days.

Short-term Faith in the Valley

Hello FT4 Tribe,

I am finally back! I apologize for the long break. I have been drafting a post since the end of June. I’ve also been in a flare since then. It has been hard finding a good moment to write when my hands are working and I can concentrate. I also wanted to make sure I had something to say that was worth reading. After Sunday I feel like I can finally post! I will share what’s been going on with me at the end of the post.

Now to the good stuff!!

Have you ever had events happen to you and you’re on a high and then all of the sudden there’s nothing happening. Nothing. Nothing good, nothing bad, just nothing. Nothing special. Nothing amazing. There may be a feeling of winds blowing causing you to sway. Or there may be storms that come that scare you. Or a feeling of just something in your way. It’s not big but it’s annoying! Well, that’s how I feel and have felt the passed few weeks. I’ve had some pretty amazing life changes happen but since things have been a little blah. Nothing amazing but nothing horrible either. Everything is just a little mundane. Don’t get me wrong I am thankful for what I have!!! Some may say “who does she think she is to expect good things all the time, to expect blessings and favor all the time? Well….. why wouldn’t I? I am a believer, tithe payer, I work hard and I put good things out so I expect good things to come back to me. Plus what’s wrong with expecting amazingness 🤷🏾‍♀️. I feel like I’m just existing. I’m going through the emotions and actions on life. Kind of like I’m am on auto pilot. Have you ever felt like that?

Yesterday I was awaken at 1:30am by my dogs barking. It startled me. I woke up thinking “do I need to get my gun or is it an animal outside or can I just pray about it and go back to sleep”? I chose to pray about it and went back to sleep 😂. I cut on the fan, cooled off and went back to sleep. I try not to use the fan because being cold isn’t good for my body. Well at 3:30ish I felt pain shoot from the base of my skull to my hips. I was lying on my stomach, on my heating pad and body pillow. As bad as the pain was I couldn’t move. I wanted to get up but it hurt worse to move so I didn’t. I wondered what happened? Yesterday I was 90% pain free. I made it a point to not do much so I wouldn’t be in pain. Yet here I was IN PAIN! IN SEVERE PAIN! The fan! That darn fan!!! It got me. I couldn’t cut it off because I couldn’t move. Ugh!!! I decided I wouldn’t go to church. I didn’t want to move. The outfit I picked out was no longer appealing because it was going to touch my skin. And it’s soooo cold in church. The thought of continuing to be cold gave me anxiety because I knew that equaled more pain! I couldn’t handle more pain. I laid in the bed in pain and for hours trying to go back to sleep. I finally did because at 7:16 my alarm woke me up. Although the pain was less severe I still couldn’t move. Church started at 8am. At 8:07 I was still in bed. I wasn’t going. Then I thought “I would find a way to get up and go to work”. So I counted to 5 and pushed myself off of my bed. I threw on a dress that was long enough to cover my leggings. I wear leggings underneath to provide warmth and keep my skin protected. I got to church and my pastors wife (also my pastor) was asking the church to allow the spirit to lead the service instead of being stuck in a traditional routine. I think sometimes being so strict on how service should look could cause people to miss their blessing 🤷🏾‍♀️. Afterwards another female minister got up to preach. Typically I am not thrilled when we have guest speakers. Today was no different. I had already reached my goal of just going to church. I didn’t really expect anything else while there. Now, the woman that spoke was anointed but I just didn’t feel like listening. (Wheewwww in hindsight I see that spirit almost messed me up).

Her message was about being desperate for God to move. I thought that was pretty cool. Then she gave these lyrics by Smokie Norful

Not a second of another minute.

Not an hour of another day

But at this moment with my arms outstretched

I need you to make a way

That got my attention. That’s exactly how I have been feeling the last few hours. Like Lord come now! Heal me now! Help me now! She spoke from Mark 5. The story of Jesus raising the woman from the dead. Of course I love this story. I mean who doesn’t get excited about hearing of Jesus preforming miracles! In the middle of her short (🙌🏾) sermon I heard “valley” in my spirit. That was kind of odd because it didn’t really have anything to do with what I was hearing from the word. I heard it several more times so I wrote it down to go research it later. To summarize the a man asked Jesus to help his dead young daughter arise. There were people around who taunted him and ask why was he bothering Jesus when the girl was already dead. Jesus heard them and told him “don’t be afraid, just believe” (Mark 5:36). Jesus then put all of them out!! Sounds like what we need to do when we are praying and believing for something but we are around people who don’t believe in us or that He will do it. Let the haters go! Cut them off! Get away from them! If you can’t move them then move yourself!! Jesus separated them so He could perform a miracle! STOP THE PRESSES! Think about that for a min! How many times did He separate you so He could bless you? Whew!!!! At the end of her story she said “my purpose today is to encourage you and tell you what that it may be hard or overwhelming but God is coming to your aide and pray for you who need help”. She called for people with cancer to come down. Not me. She called for something else. Wasn’t me. Then she said “if you need healing from anything”. I thought “I already got prayer for this. I already believe I’m healed. I can’t keep going up there for the same thing”. See how quick the enemy works? He shot his shot🙄.

Well I went anyway. I got to the altar and stood in the long line of others who needed prayer. As I was standing there the choir sang “We claim a healing” over and over. I began to feel like I was going to battle. I was getting stronger! Like maybe I was going to be ok. Then I heard “valley” again. Tears started running down my face. Sometimes you gotta just let it go.

As she got closer to me I began preparing what I was going to say, how I was going to say it and how to throw in prayer for someone close to me too. Ok y’all ready for more awesomeness?

Pause for dramatic effect

The spirit filled healing team of two got to me me and they spoke! One said “God told me it was you” the other followed with “it’s your feet and legs” as she knelt down to pray over my shoeless feet. Y’all!!!!!! I was straight up ugly crying, body shaking and crying out. Did y’all catch that? I was preparing and coming up with a plan BUT when they got to me I didn’t have to say a word because they already knew! All I had to do was come down!!!! So many times we are preparing and planning when God has already worked it out. He is just waiting on us. Waiting to see if we will be obedient and be faithful! They prayed over me and my body followed by my Pastor who sealed the prayer! Why did I break down (other than this)? I broke down because at that moment I knew He heard me. I knew He knew my name. Out of all of the places, all the people in the room, He told her my name! I was feeling so unworthy, insignificant, unimportant, forgotten and over looked! But ohhhhhh BUT GOD! He knows my name! He knows my cry like a parent knows the cry of their child mixed in with 100 other cries. I am (we are) that important to Him!

As if that wasn’t enough in Sunday school we studied 1 Samuel 1:9. This is the story of barren Hannah. Verse says 19 “and God remembered her”. Now God was just showing out!!! So like Him! Going above and beyond for His children!

Short Term Faith:

Sometimes it’s hard to keep my eyes on Him and my faith strong when I am in so much pain I can’t see my way out. Or when: I can’t physically see, the pain is so great I can’t breathe, I’m having panic attacks when I look at the weather for the week and see rain, I feel like I’m walking on bone that are breaking, having panic attacks for an unknown reason. It’s hard to remember the Son in the middle of the storm 😉. Now my long- term faith is unwavering! I know that He is the I am. I know He will heal me of this regardless of what the doctor says. But my short/term needs work! But how do I do that? By putting more word in me! By reading it, listening to it, studying it. By talking to Him and telling Him how I feel and LISTENING to Him. How is your short-term faith? If it’s not as strong as your long-term think of some ways to work on it. If you have something that’s worked for you then please share in the comments section.

The Valley:

The typical definition is a low area between hills or mountains. The Bible, however, refers to the valley in several different context. It can be a place of healing, restoration, decision making, suffering m, and battles. A few of the many valleys talked about it the Bible are:

Valley of Shadow of Death: dark and hopeless place

Valley of Eschol: a place of decision making

Valley of Kidron (Jehoshaphat)- where battles take place

So after researching “Valley” I began to think how does this relate to me and what I’ve been going through and feeling lately? I realize that I am in my valley. I am in a place/season in life where God is holding me if you will. Where He is showing me things, making sure I am where He needs me to be before He can take me to the next level. I’m facing trials, defeating giants, making decisions and learning to rest. My trials are mental and physical. Ive said before that for me it’s a cycle. My physical state effect my mental state. Then my mental effects my physical. For example: my pain levels shoot up and after so much time of being in pain I have a panic attack. Nausea sets in. Stress that I’m dying cause I can’t breathe and wondering will the pain end sets in and makes the attack last longer. Then my body shuts down. It’s a crazy and unfair cycle!

This entire day was a set up!!! God was waiting on me to see if I would do my part by showing up at church. It was a sacrifice but comparing it to His….there is no comparison. He showed me and told me that He hears me and then he showed me where I was in life. Those times where God comes in and cancels all of your doubt are the moments that just put you in awe!! I have to learn to keep the faith and remember that He will heal me in the hard moments. That short-term faith while I’m here in my valley.

Prayer request:

– Angela: healing in kidneys

– Vic: healing in kidneys

– Gunner: continued healing in Brain stem

– Nathan: continued healing in brain and body

– L. M: increase in sleep

– W.B: give peace and strength

– R.C: comfort for family due to a death

– all suffering from mental & physical illnesses

– those fighting cancer

– those fighting depression

– those fighting an invisible illness

I really hope that this has at least made you think. Please leave me a comment! I love reading your thoughts. If you are interested in what’s been going on with me keep reading. If not, have an amazing day!!!

The last few months have been tough! I have made it because of God, encouragement from my mom and dad, prayers from my friends, support from my boyfriend and my Zumba friends! Over the past few weeks panic attacks have come back. I’ve had 3. I’m really not sure of the cause but I think they are pain related. I’ve also been under a lot of stress. I started a business, family stuff and my body is tired. I rest a lot but my body is still exhausted.

Symptoms:

– blurry vision

– muscle fatigue

– muscle cramping

– skin sensitive to touch, air and clothing

– sensitivity to cold

– leg and feet pain

– pain in ribs and chest

– difficultly concentrating

– extreme exhaustion

– lower back pain

– hip pain

– difficultly breathing

– sensitivity to smell. Lately I’ve been smelling like a spicy metal. It’s very random yet aversive!! I smell it in: colognes, perfumes, chapstick, sir freshener, taste it in all sprite and some Mountain Dew 🤷🏾‍♀️.

These are some of the memes that have helped me. Fibro followers I’m sure you can relate. Everyone else probably can too lol.

Obviously this…..

It’s crazy how sitting can exhaust me. The other day I drove home from around the corner and I needed to rest when I got there. 😂😂😂

Well…until God heals me! I will not be doing this for the rest of my life. I have plans!!! Like being a wife, mom and business owner that’s active in everything!!

Pretty much🤷🏾‍♀️And to cope with all of the changes and accept my limitations.

Weather gives me straight up anxiety. I look and calm myself down at the same time.

I made it to the gym 3 days in a row and then my flare got worse. Every time I try and get in a routine my pain gets worse and I have to stop. My mind wants to go everyday but my body is like “uhhhh no” But I am down a total of 14lbs!! I’m excited!

Have an amazing week! Thank you all for encouraging and following me on this journey!!