“I was diagnosed with polymiositis when I was 31. I am a mom and had to do what I had to do to get better for my kids. I don’t want to ever forget the details. I park in the farthest parking spot because I am thankful I can walk. I want to share my story and remember how far I have come and how thankful I am for this life.
I am taking a shower by myself again and putting on shoes and stocks. I don’t take those for granted anymore. I have come so far in a short period of time. There is no cure, but I have faith that I will be cured and off medication. I changed my diet and started taking vitamins and herbs.
I have been married almost nine years to my college sweetheart. For better or worse and in sickness or health came too soon. One day it is fine and the next day he is feeding me. He is my lifesaver and worked around the clock at his job and taking care of me. He used sick time to take me to my appointments and got in trouble at work but he would not abandon me. We got lucky and found a doctor in Mobile who took me seriously and figured it out. Things could have turned out much differently.
It is hard to find people to talk to when you are sick. It is isolating and people don’t know how to treat you. I wanted to say, ‘I know one day I am going to be fine, but let me tell you right now how I am feeling. I need to tell you I am scared.’ Everyone wants to be so positive, they don’t know how to deal with fear. My fear is for my two young kids. What if they have to live without me? Some people are worse off than me. If God doesn’t choose to heal me, I will be okay.”
Here is Alana’s story….
Thinking back on it, I know now that I was having symptoms. It was a slow, gradual process with something being just ever so slightly “off” that just the week before I was sobbing in my bed in pure agony with my husband helpless to do anything but offer words of comfort and looks of worry, I was uncertain anything was truly wrong.
I was diagnosed with polymyositis when I was 31 years old. I was married with two small children and we had just decided to start trying for a third. I was living a typical working mom life. After I had my 2nd child, I didn’t feel like myself. I was exhausted all the time, something my OB/GYN told me was typical of motherhood. I shrugged it off, telling myself I needed to eat better, exercise more. A year or two later, I noticed I was waking up to fingers that felt stiff and old. Something wasn’t right. I asked my OB/GYN to test me for arthritis. I was told the tests all came back normal so I doubted myself, shrugged it off. Looking back, I regret that I didn’t ask what tests were run, I didn’t even see the results.
I started having trouble concentrating on the road, having to pull over because I felt like I was going to slam into every passing car because I couldn’t stay focused. I stopped eating and drinking in the car after I found even swallowing my saliva while driving felt like a life or death decision. I was terrified. I didn’t know what was happening to me. I started to think I was having some sort of mental health crisis and I didn’t know where to turn, who to tell, what to say… I was ashamed.
I started having trouble doing easy tasks. Flat ironing my hair required so much effort I was winded before I was even halfway done. I was taking clothes out of the washing machine to put in the dryer and I was so sore the next day, it was as if I had run a marathon. I told myself I was just out of shape.
I went to work one day and my coworker asked me what was going on with my eye, that there was redness or bruising around it. I went to the bathroom but I didn’t see anything. Days later, what was redness turned into full blown puffy and swollen eyelids and cheeks. My mom was concerned. I told her it must be allergies from the construction dust (we had been remodeling at the time). I took some allergy medicine and tried to ignore the questions my gut started to raise. After weeks of puffy face and no change, I told my mom I would go ahead and go see a doctor.
I didn’t have a primary physician at the time so I was worried about getting an appointment. After a call, informing me I wouldn’t be able to be seen for about 2 months, I was able to get in with another physician the day after I called. (I call these chain of events Divine intervention) When I went in, she asked me what I was in for. I told her about my puffy face, told her I wasn’t allergic to anything and I had taken Benadryl but it didn’t seem to be working. I then just mentioned to her casually that I had been having some pain in my upper inner thighs. I was honestly expecting a “you have allergy, try this prescription allergy medicine” spill. I remember her face as clear as day. She looked at me and said in her accent that she didn’t think this was allergy and that she thinks it is very good that I came in today and she was ordering blood work asap.
When I got home, I told my mom that I had blood work done and had to wait on the results. My mom said ok, “just pray your creatine levels are low”. My results came back pretty fast. I remember looking over them, saying to myself “ok, everything looks good, everything looks good. Great.” Then I saw my creatine levels. I started trembling, my eyes started tearing up. I didn’t know what it meant or what it was, all I knew was my mom said they should be low, and they weren’t.
I got a call from my doctor. My levels were 100 times more than they should have been. I was to go see a specialist and have more tests done ASAP. I was sent to a rheumatologist, scheduled for MRI, muscle biopsy, and an electromyography (EMG). My MRI came back and my rheumatologist was confident that it was probably polymyositis. I decided to cancel the EMG and the muscle biopsy.
You know how some people say they don’t go to the doctor because they are fine and if they aren’t they don’t want to know because then they will get sick? Maybe there is something to this. It seems like once there was a name out there, a possible diagnosis, my body was like ‘ok, let’s start going crazy’. It seems like one day I was doing kinda ok and the next day I’m writhing in pain, Tylenol not working, sobbing and helpless as I cannot even turn over on my pillow by myself.
I went from a fully capable person to a person who couldn’t sit up in bed, couldn’t roll over in bed, couldn’t get out of bed, couldn’t adjust myself on a pillow in a matter of DAYS. My husband drove me to the doctor, no appointment, I needed something now. We spoke with the nurse there and explained what was going on. I got a prescription for prednisone and an official diagnosis.
By this time, I was no longer the fully independent person I was before, although I tried to hide it. I could barely walk, my husband was dressing me and putting on my socks and shoes, I could barely hold a fork to eat, my husband was helping me pick up cups so I could drink, I would lean against the stall so I could let the water wash over me because I couldn’t stand up by myself long enough to shower, I got braids because I couldn’t do my hair any longer, I couldn’t pick up my children, I couldn’t drive. I was in pain just from sitting, just from lying down. I was in pain just from being.
I was put on high doses of steroids and powerful immunosuppressants. I would go and get labs drawn every other week, making sure to take off the bandages or put on a jacket to hide the unsightly bruising before my children saw me. I saw a naturopathic practitioner and began taking vitamins, minerals and herbs and changing my diet. I was starting to feel better. I wasn’t in as much pain and I could move my neck by myself. My doctor wanted me off the steroids as soon as possible, so we tried to start a taper.
I got the news that my levels had gone back up while my parents were on vacation. I waited until their last day to tell them that I would have to start IVIG (intravenous immunoglobulin) treatment. My husband would take me to the hospital 3 days a week and sit with me while the nurse hooked me to my IV with the medication and my monitoring machine and checked my temperature every half hour for 4-6 hours. I would try to ignore the beeping and the wires while working on my laptop trying to make work deadlines.
After IVIG, I was able to maintain my levels while tapering the steroids. I was doing physical therapy up until that point but decided to stop. Thankfully, none of my muscles had atrophied and once the drugs stopped the inflammation, the muscle weakness wasn’t as marked.
It’s been a year and a half since my diagnosis and I am a walking miracle, as they say. Polymyositis is an extremely rare disease. The odds of a physician in Mobile, All. knowing what it was and being able to treat it was nothing short of a miracle. Many are not as fortunate. In my online support group, many people had to fly to different states and even different countries to get someone who knows about the condition. Early detection and diagnosis is crucial with this disease and sadly, misdiagnosis or trial and error with doctors leads many people not to have the exceptional results I have had.
So many things have changed since my diagnosis. Obviously, our baby plans had to be put on hold. I had to stop working for a long time and still work mainly from home. I still suffer from extreme fatigue and some weakness so I am unable to fully participate in many things. I am working to build up my strength and I am doing so much better, I cannot complain. I have moments where fear of relapse tries to enter my mind and my heart but I just put my trust in the Lord and believe that I am healed.
I am currently on half of the dosage of the immunosuppressant’s and I plan to be off the steroids completely by the end of this month. My goal is to be off all medication by my birthday this November. My doctor said he’s never had a case where the patient was able to get off the medication so we have been winging it as my dosage has gotten lower and lower. His office called and said my last MRI showed no signs of polymyositis, less that a year and a half after initial diagnosis.
I would not have been able to make it had it not been for my husband. I have to give him special mention because he kept everything going when it felt at times like my world was falling apart. He took over all of the household duties while continuing to work and also worked another job to earn more income. (Minerals and herbs, natural foods and special water, Co-pays, prescriptions, treatments, therapy, etc. isn’t cheap that’s for sure). He entertained the kids when I was too tired to even move, and he still does. He was and is my rock and I am so grateful to have him in my life and in our children’s life. I’d also like to thank my parents, my sister, Jessica for everything she did from bringing groceries to taking me to treatment and my Cousin Judson for being there no matter what. I love you all.
With my 32nd birthday only a few days away, I reflect on how far I have come on this journey.
Myositis is a rare group of autoimmune diseases that effects our very young to our very old. I was extremely lucky to get a quick diagnosis, find the right combination of medications and have my body react to them. Everyone is not as lucky, we have had to say goodbye to several members of my online support group since I joined not even two years ago.
I pray my story brings awareness to myositis and those of us living with it and those who have passed from it. Currently, there is no cure for myositis, but I’m hopeful.
Donate today: Alana’s Hope
To find out more about polymyositis and other forms of myositis, visit The Myositis Association (TMA) www.myositis.org
Special Thanks to the Doctors, Nurses and Phlebotomist’s at: Diagnostic and Medical Clinic Hillcrest Rd., Springhill Medical Center, Mobile Infirmary Diagnostic & Medical Clinic Springhill Ave.