Health, Uncategorized

Living with an Autoimmune Disease

I have had an autoimmune disease since I was two years old. Back then I was diagnosed with JRA-Junior Rheumatoid Arthritis. I don’t specifically remember that time in my life but my parents remember it well. Lots of doctor’s appointments, lots of testing, and lots of tears from my mom. She tells me that potty training me was hard because I had trouble walking by myself…especially in the early mornings when my joints were particularly stiff so she had to be on top of it and carry me every time I needed to go to the bathroom. After a few months my mom finally got some answers and I was put on a medicine called Naprosyn which is an NSAID (Non-steroidal anti-inflammatory drug) and used to treat arthritis along with other auto-immune diseases. I also had physical therapy that my parents would do with me which included playing with silly putty and my mom says she gave me a lot of baths to help with the muscle stiffness and aches. My flare lasted about 5 months and I went in to remission once the medication kicked into effect.

Before I go any further, I wanted to share a link where you can read a little bit more about autoimmune diseases so that you can better understand them. Examples of autoimmune diseases that you have probably heard of include:

  • arthritis
  • lupus
  • multiple sclerosis
  • psoriasis
  • type 1 diabetes
  • Hashimoto’s thyroid disease

Hopefully that link was helpful and gave you a little bit of insight as to what autoimmune diseases entail and the pain they can cause.

Throughout my adolescent years I experienced infrequent mild pain. Mostly when the weather changed or when I was involved in vigorous activity like a weekend long softball tournament. My parents warned against certain activities like soccer since running is such a high impact activity so I tried to stay away from things like that. Other than that, I was able to me a normal kid and a normal teenager.

Fast forward to when I was about 23 years old. I don’t really remember how the flare started but I remember everything else pretty vividly. You know when you jam a finger and you get that tinge of pain when you try to bend it at all? Yeah, that’s what my knees felt like anytime I tried to move them. I remember trying to use crutches to help me walk better and on a particularly bad day I even had to call my mom to come over and help me get dressed for the day. On the Western Slope of Colorado there aren’t very many specialty doctors and my options were limited as far as rheumatologists. I decided on a doctor that was in my home town and went to visit to get some answers. After a few blood draws and appointments, the rheumatologist diagnosed me with lupus. I didn’t have all of the symptoms but she was confident that I had enough of them to diagnose me. She put me on a prescription for prednisone and methotrexate and I took those daily for 6 months. Although these medications helped my joint issues, they caused a heap of other problems. The side effects I experienced included swelling, weight gain, hair loss, mood swings, and pretty major depression. I cried every day for the entire time I was on the meds and one day I just decided that it wasn’t worth it anymore. I wanted to feel like my old self again, even if it meant having joint pain. When I finally had weaned myself off of the meds, I was so relieved to find out that I was no longer in a flare but was in remission.

I began to exercise and workout regularly to try to lose the weight and get back to my normal self and I succeeded. I got married, switched jobs a few times and had 3 kids all without any flares or joint problems. In the meantime I wasn’t happy with my original rheumatologist because I didn’t feel like she had given me very many options for medications nor discussed the side effects of the medications she prescribed me. She gave me a very scary diagnosis and I felt like she had left me hanging with no support. I had heard that a new rheumatologist had moved to the town that I currently live in so I set up an appointment to establish her as my new rheumatologist. I made yearly visits to her to build a relationship should anything go wrong in the future. At those visits we went over my previous doctors notes and drew more blood to run some more tests. My new doctor decided that she was going to re-diagnose me with rheumatoid arthritis. I had a few factors that made me appear that I had lupus but one big factor, my ANA, came back negative. I also didn’t have the face rashes, mouth sores, or nose sores that accompany most people with lupus. So with my new diagnosis I tried to stay healthy and active and continue to live my life!

I was in remission for 7 years and then the disease hit me again. I was about to turn 30 and life was going perfectly. I had started a new workout program to help lose the last of my baby weight and I remember one day telling my husband that I was sore. And not in a typical after workout sore but I told him I could feel a flare coming on. I was scared for what would happen and I knew that my mental attitude could not be where it was last time because I had kids now and they needed their mom to be happy and healthy. So sure enough, the flare progressed. I wasn’t able to play on a volleyball league that I finally had got invited to, I wasn’t able to participate in several activities with my MOPS friends like our annual night hike, and I couldn’t go to the gym or do any sort of physical activity, including running around with my kids. I also had a hard time carrying my newborn around and taking Cason to and from school. A few times I had to call my parents and ask them to come over and get Cason and take him to school because I just couldn’t do it. When I did take Cason to school I left Kinsley and Kellan in the car because lifting them out and carrying the carseat was impossible…and the other moms gave me dirty looks and judged me for leaving my kids in the car.

I was scared of medication so when I went to my rheumatologist to get help I decided against the Plaquenil that she recommended. I tried using CBD oil, cannabis salves, essential oils, ibuprofen, and changing my eating habits. It has now been about 6 months in this flare and last week I decided to visit my rheumy again. After discussing my current issues with my rheumatologist, she felt like she needed to change my diagnosis again and has changed it to Psoriatic Arthritis. I have a few specific joints that flare up and swell that she said is symptomatic of Psoriatic Arthritis. Usually those with PA also have Psoriasis, which I don’t have, but my doctor warned me that future flares could bring that on. I told her I was ready to take the medication but that I wanted to know all of the potential side effects that I could be facing. Loss of vision, hair loss, weight gain/loss, mood swings, nausea, stomach pain, dizziness, headaches, and skin rashes were among those side effects. Everyday that I am not in remission, is another day that my body is fighting itself and eating away at my joints. I have done my due diligence and now I just have to pray that I will have little to no side effects.

I have been on the medication for about a week and so far I’ve had a few headaches but thankfully nothing else. I have also joined several support groups on Facebook for people living with RA and those taking Plaquenil. I am hoping that the Plaquenil kicks in soon so I can be the mom I was before my flare. The mom who could run around and play football with Cason, play in Kinsley’s princess castle, and crawl on the floor with Kellan. I have a much better mindset this time and I am determined to not let this disease dictate what I can do. I will not let it limit my activities. I will not let it control my moods or emotions. I can only hope that my flare ups continue to be few and far between because these gaps in my life are tough. They are physically, mentally, and emotionally tough.

Those with chronic illnesses aren't faking being sick. They are actually faking being well..png

Thank you for listening to this post and learning more about autoimmune diseases. It’s important to spread awareness so no one feels like they have to suffer in silence. I will keep you updated on my journey:)

xo

~Samantha

9 thoughts on “Living with an Autoimmune Disease”

  1. I have been struggling for years with what the doctors believe is an autoimmune disease, but they haven’t been able to pin it down exactly. Right now my diagnoses are fibromyalgia and CFS/ME, but there is rising suspicion I may actually have Ehlers-Danlos, so I go for testing for that soon. It is not an easy life to deal with chronic illness/pain.

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  2. It definitely is not. It’s the first thing I think about when I wake up and the last thing I’m thinking of before I go to bed. Prayers that you get a diagnosis and find a treatment plan that helps you feel better! You’re not alone!

    Liked by 1 person

  3. Great post! Thanks for sharing something so vulnerable, my mother suffers from a few auto immune diseases so I have seen the pain they can cause and just pray I never have to feel that pain at the level you or she has.

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  4. Hi Samantha, thank you for sharing. We understand the struggle of having to deal with an autoimmune disease and recognize your strength. If you would like to learn more about autoimmune diseases and ways to improve your health through functional medicine (such as food therapy and movement therapy) check out our blog! We have lots of resources that you may be interested in 🙂 #spooniestrong

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  5. Sorry to hear about your struggle with autoimmune disease. I have Sjogren’s Syndrome, which causes pretty significant joint paint, and I’ve been blogging about my struggle to get diagnosed by my rheumatologist on my site (autoimmunewarrior.org). I’ll look out for another update on your health journey!

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  6. Oh I’m so sorry to hear that you are struggling too. Finding a diagnosis can be the toughest part. Mine has changed about 5 times so even though I have one now, who knows if it will stick with me forever. I will definitely check out your blog!

    Liked by 1 person

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