‘My sister arrived to find me trying to clean up another bladder accident. She pulled out a pack of Depends. ‘Well I guess you WILL be needing these!’ I reluctantly took the pack from her, and put on the adult diaper.’

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“In July of 2017, I bought a pair of shoes and after a few wears my feet began to feel numb and tingly. I thought the new shoes were causing the pain so I stopped wearing them. I could not have been more wrong! At the beginning of Aug 2017, my brother-in-law married my friend and I could barely make it through their special day as a bridesmaid because of my painful, numb, tingling feet in my high heel shoes. My husband and I loved working out together and doing outdoor activities and he noticed my stamina was not the same. At this point I just thought I was doing too much and needed more rest. We have two boys so I was always busy with their sports and activities. The numbness and tingling in my feet got severely worse to where it hurt to stand up for long periods of time. I thought I needed to increase my water intake, decrease my alcohol intake, stretch more, stop exercising so long and hard, start incorporating yoga into my workout routine, rest and sleep more, and probably start back eating some meats because I was vegan. By mid Nov 2017 I felt like every muscle in my body was fatigued and sore. My entire body was now constantly in pain, I was severely weak, and I began having difficulty walking, using my arms and my hands, and I was always tired. My health issues were now affecting my work and life. I was trying not to complain but I finally had to tell my husband how bad my symptoms really were; especially since all my symptoms were invisible.

Courtesy of Crystal Dorion

Our 10 year wedding anniversary was coming up on Nov 24th and I knew I wasn’t going to be able to truly enjoy it with him like we both wanted to. Plus he was noticing I wasn’t working as much as I had been so I needed to speak up. After working in corporate environments for years I had finally fulfilled my childhood passion of becoming a Licensed Cosmetologist, but now I was unable to continue doing what I loved because of my physical decline in health. My hands and fingers hurt so bad and were so weak I could not shampoo my clients hair. The styling tools became too heavy for me to hold in my hands. My feet and legs felt like they could barely support my body weight. I refused to stop trying to work until one day my co-worker’s client pulled me to the side after she observed me leaning on the salon chairs, holding on to the walls when I walked, and moving like cement was settling in my body. She quietly whispered to me, ‘baby are you alright? What’s going on with you? I’ve never seen you move like this and it is worrying me! You’re always smiling and skipping through the salon, what’s going on?’ As I tried to hold back my tears I answered her honestly and said, ‘I don’t know what’s going on and it’s worrying me also!’

The next day the medical doctor called me to personally go over the results of my bloodwork and to tell me she did not know what was going on with me. She explained that she could clearly tell I was in pain when she examined me but felt as if my condition was out of her scope of practice. I thanked her for being honest and asked her to refer me to a neurologist who was recommended to me by one of my clients. Over the Christmas and New Year’s holiday, my family did their best to keep me uplifted but it was obvious everyone was worried about my health. We told the boys, ‘mommy’s back was hurting and causing lots of pain’ but I had a doctor’s appointment in January so we would find out what’s going on and I would be better in the New Year. We had no idea how devastating 2018 would be!

On Jan 4, 2018 I attempted to leave home by myself to run a quick errand. Shortly after getting in the car and driving off I realized this wasn’t a good idea. I became very dizzy while the car was moving and my vision was blurred and doubled when looking from right to left to check for oncoming traffic. I was behind another car as we approached a red light and things got very scary when I was unable to press my foot firmly on the brake pedal to stop the car. I kept pressing my foot down on what I thought was the brake pedal but my feet were so numb, tingly and weak I honestly couldn’t feel anything. I had to quickly put my caution lights on and pull up the hand brake with all my strength in order to prevent from hitting the car in front of me. As the traffic light turned green, I sat in my car with the caution lights on breathing heavily, shaking, sweating from panic, and in more pain because I was so nervous about the accident that almost happened. As I sat in the middle of the road with cars blowing at me and aggressively passing me, I bursted out crying at the thought I had no business trying to drive in my condition just like I had no business trying to continue working in my condition. I gripped the steering wheel as tight as my numb hands and fingers could, I yelled out loud in the quiet, still car, ‘What is my condition? What is wrong with me?’

I cried hard that night as I explained to my husband what happened in traffic. I could see worry in his eyes as he tried to console me. He told me I was going to be just fine but deep inside we were terrified and uncertain. For the first time I admitted to myself and to him I was scared. Through my tears and choked up voice I blurted,’I’m scared of finding out what’s really wrong with me; I’m scared of how fast my health is declining; I’m scared I won’t be able to be the super mom and wife I have been; I’m scared because I’m not able to work…I’m just scared! I was sobbing uncontrollably. He held me tighter, and began rocking me back and forth as my body went limp in his arms. I cried myself to sleep.

Over the next two weeks leading up to my Neurologist appointment my balance became much worse. I was stumbling, tripping, and falling all over the house. On the day of my neurologist appointment I was very hopeful we were finally going to get some answers. After extensive questions, a thorough examination, nerve conduction tests, and bloodwork, I was informed I had nerve damage in my hands, fingers, legs and feet-peripheral neuropathy-but the neurologist needed to wait for all test results to come back in order to find out what was causing it. I was so excited when the day of my follow-up appointment arrived. We arrived a bit early and nervously awaited the news. My husband looked at me, took my hand and said, ‘I just want you to know that whatever the doctor says we are going to get through it together!’ I teared-up and opened my mouth to say thank you, I love you, but before any words could come out we heard a door open and my name was called. We looked at each other, stood up and began walking back to talk to the doctor. With a monotone voice he said, ‘the last time you were here I conducted nerve tests on your hands, fingers, legs and feet, and the test showed you have significant nerve damage-as if something is attacking your nerves. The nerve damage is causing muscle atrophy which is why you’re experiencing extreme weakness and fatigue. I was hoping to find an answer from your bloodwork as to what’s causing you this problem, but your bloodwork came back perfect. I tested for everything I know to test for-even Lyme-however nothing showed up. I’m going to have to refer you to a NeuroMuscular Specialist. My office manager has already called a few of the specialists to see who would be able to see you the soonest, so just wait for them to call you for an appointment okay. Good Luck!’

He then stood up and extended his hand to me for a handshake but I was still in shock from his last few sentences so I didn’t move. Before he could reach for the doorknob I yelled, wait! As he turned around I said, so that’s it? You have no answers for me and you’re sending me to another doctor?! He sat back down and said, ‘I know you were hoping for answers today and I apologize that I can’t be more detailed but your condition is out of my scope of practice so I need to send you to a specialist okay. You all have a good day.’ He nodded, stood up, then walked out of the room. My husband immediately looked at me as tears were streaming down my face and said, ‘baby calm down.’ I yelled, HAVE A GOOD DAY? GOOD LUCK? REALLY? I couldn’t calm down. I bursted into tears thinking I came for answers today and I still don’t know what’s going on with me and he wants me to go back home and just wait!

Walking became more and more difficult and I was having trouble making it to the bathroom to use the commode. After several bladder accidents, my oldest sister-who lives in North Carolina-was growing weary with me playing the waiting game. I remember her crying voice through the phone saying, ‘you could die waiting to see a specialist, please just go to the Emergency Room and refuse to leave without some answers.’ She also suggested I wear Depends because of my bladder accidents. She knew I would be against wearing adult diapers so she told our youngest sister to just buy the Depends and take them to me.

On the morning of February 13, 2018, I was home alone and having a difficult time breathing when my oldest sister called. She heard the distress in my voice and started crying. She immediately called our youngest sister who was getting off work from her hospital shift and begged her to go check on me. ‘Thank you Lord’ I whispered out loud! I tried not to complain to anyone, but I needed help. My youngest sister arrived to find me trying to clean up another bladder accident and we both laughed when she pulled a pack of Depends and said, ‘well I guess you WILL be needing these!’ I reluctantly took the pack from her and put on the adult diaper. I felt so many emotions as soon as I put it on. I felt sad for myself that I needed to wear it, embarrassed, and confused because I still didn’t know what was going on with me. I began hyperventilating. My sister tried to calm me down but I panicked more with each breath I was struggling to take. I felt sharp pains in my chest and as if I was about to pass out. I think I need to go to the emergency room, I whispered. My sister knew I didn’t like going to doctors or hospitals so she became nervous as she realized I must not be feeling well if I asked to go to the hospital.

Courtesy of Crystal Dorion

I’ll never forget I was so weak and in so much pain I needed a wheelchair once we arrived at the medical clinic. She saw in my records I was there in the emergency room only two days prior and she said they should have admitted me then. Upon a thorough physical examination and talking with me about the start and progression of my symptoms, she informed me her initial thoughts were I had one or two types of rare NeuroMuscular diseases in which my immune system was attacking my nerves. She said she would have to perform specific single fiber nerve testing to determine for sure. Before we left I asked one last question. ‘Will I recover from this?’ The room became silent. The doctor hesitated to respond then said she couldn’t answer that question at that time. She then said, ‘I will tell you this, you have significant nerve damage and I’m not sure the damage can be undone.’ I immediately started crying. She asked me not to cry and said that’s why she didn’t want to answer the question. She took my hand and said she would see me on Monday. When he got into the car he wiped my tears but his eyes were now welling up. He grabbed my hand then looked at me with a firm eye contact and said, ‘I don’t care what the doctor says, you are going to overcome this okay?!’ That night and the next three days were physically awful. My pain level was a 20 on a scale of 1-10! My hands, legs and feet burned as if they were on an open flame grill. It hurt my face to chew food, my throat to swallow, and my eyes to be open for long periods of time. I grew weaker each day. I felt as if I was wasting away. I moaned, cried and prayed for God to heal me and take the pain away.

Courtesy of Crystal Dorion

February 19, 2018 finally arrived! All I could think about was today is finally the day for answers. Upon completion of the test the doctor and her medical supervisor came into the room to deliver the results to me and my entourage. It was as if we were holding our breath as she began to talk. She said, ‘the test results showed you tested positive for CIDP-which stands for Chronic Inflammatory Demyelinating PolyNeuropathy. CIDP is a chronic inflammatory response in your body that destroys the protective covering around the nerves and this causes extreme weakness and gradual loss of sensations, reflexes, sensory and motor skills. Over time, this damage leads to disability in the arms and legs and in some cases permanent paralysis.’ She proceeded to say, ‘I also believe you have a second rare NeuroMuscular Disease called Myasthenia Gravis (MG), which affects voluntary muscles causing symptoms such as weak drooping eyelids, blurred or double vision, slurred speech, difficulty chewing and swallowing, extreme weakness in the arms and legs, chronic muscle fatigue and difficulty breathing. There is no known cure for either disease; only treatments. We will need to start you on a high dose of steroids today and see you back in 30 days for a check-up to see how your body is responding. The steroids have several side effects-weight gain being one of the most prevalent-but I’m sure you’d rather gain weight than be permanently disabled right?!’  She said, ‘It’s going to be okay Crystal, we have faith you’re going to fully recover sweetheart.’ I nodded my head yes while my hands were still covering my face.

My follow-up appointment was simply depressing. I had gained weight from the steroids but lost more of my independence. I was wearing adult diapers everyday, my hands were basically useless; I couldn’t even scratch myself when I itched. I needed help getting out of the bed, getting on and off the toilet, getting dressed, cooking, eating, etc.  Every other treatment my doctor discussed sounded harsh, damaged tissue and organs, and I honestly did not want to try anything else. But once again, the doctor put fear in me if I didn’t try another treatment, my physical condition would get worse.

I spent the next few weeks engulfed in research about the diagnoses I had received and the various treatments. It all was very depressing. The new treatment my doctor wanted me to try was an IV infusion that required administration by a nurse. . After two days of starting the infusion treatment I had a very bad reaction and had to be hospitalized for two weeks. Being in the hospital gave me time to reflect, rest and pray. I vowed to put my trust in God and listen to my inner voice more-the voice that kept telling me not to have that infusion treatment. Having to be hospitalized was a tremendous set back in my health. I lost more strength, wasn’t able to walk, was totally dependent and needed around the clock care once I was released. The amount of support I received was overwhelming. Everyone chipped in to help out in some way.

Courtesy of Crystal Dorion

I decided to add natural herbs and supplements. I trained hard in physical therapy as if I were going to the gym to workout. I started doing my occupational and physical therapy exercises at home. I started resting more, stressing less and staying positive; I will get better. I missed my youngest son’s soccer practices and games, I missed my oldest son’s track meets, and I missed all but one of my his football games. I made a promise to him I would fight to get better so I could attend at least one game, and I did. When I went back to my doctor for a check-up on October 18, 2018, she was very surprised to see the change in me. I was happier, more energetic, and stronger. She asked what was different. I told her my attitude, my faith, my determination, physical and occupational therapy, and I was only taking the medication once or twice a week only when needed. My check-up on January 31, 2019 was great.

My prayer for a long time has always been for God to bless me so that I can be a blessing to others. Since I decided to stay positive and fight back through this ‘health obstacle’ I am simply amazed at the amount of people who have told me I inspire and motivate them. I was even invited to speak at a church to tell my story and how I choose to have faith and fight back. I am nowhere close to where I want or need to be for physical independence, but I will remain hopeful and do my part to continue getting stronger and healthier until I’m fully recovered!”

Courtesy of Crystal Dorion

This story was submitted to Love What Matters by Crystal Dorion. Follow her on Instagram here and here. Submit your own story here, and subscribe to our best stories in our free newsletter here.

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Read more inspiring stories about people dealing with chronic illness here:

‘One thing that’s become apparent throughout my chronic illness is, as a society, we’ve become so conditioned to view disabled people to be ‘an inspiration.’

‘The doctors said, ‘Good luck. There is no cure.’ I didn’t think I was going to make it. My siblings were scared for me.’

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