Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Guest Post: 'Alisa's Story


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My name is Alisa Belskis. I am 42, married and have 2 girls ages 13 and 16. I have chronic back pain after have 3 surgeries including a fusion of my low back. I have early onset DDD and have 3 more discs that have collapsed and are fusing to themselves. I also have POTS and get chronic kidney infections.

I am a Nurse not practicing anymore. I was an outdoor enthusiast including being certified in Outdoor Emergency Care doing ski patrol, hiking with my dog, kayaking and stand up paddle boarding. Helping people is my passion. I do not practice as a Nurse due to pain. Sitting and standing are super hard for me. I do run a small business from home helping others gain confidence and teaching about skincare.

This first began in 2014 when I was 38. I was doing ski patrol and thought I had pulled a hamstring. Kept working as a nurse and hauling people down the mountain in a toboggan until it got so bad I couldn’t sit. When my leg turned completely numb, I saw my Dr.

Initial diagnosis was pretty easy with MRI. I had an initial microdisectomy which should have healed in 6 weeks but the disc ruptured again. Had the second surgery and the same thing happened. After the two surgeries, the disc space was unstable so it had to be fused. After the fusion, I had complications. I had blood clots to my lung and leg leading to a stent in my belly. That’s when I found out I had POTS. My heart rate would not come down in the hospital.

Then came the hard part. No one knew why I was still having pain. I kept going to PT with no results. This only led to more pain. My surgeon eventually told me I had failed back syndrome which is a catch all for back surgeries that don’t end up delieving pain. I had to research to see what else was out there. The doctors had no idea what to do. I sought out 2nd and 3rd opinions to find out that the 3 levels above my fused site were collapsed. Since they are now fusing to themselves, the surgeons do not think trying to break them apart and then fuse them would do me any justice. So here I sit, doing my own research trying to relieve pain. I’ve been to massage therapy, water therapy and have come up with a compound that I had my Dr. make at the pharmacy to use topically. I’ve tried every natural therapy I can find on the internet and within fb groups. Mostly hot packs and laying down help with the pain.

Alisa

When my back flares up, I’m usually confined to the couch for a few days. When I’m feeling better I still lay all day and do small things like 1 load of laundry or light vacuuming. Usually 1 thing a day. The pain can go from burning down my leg from a damaged nerve to muscle spasms preventing me from standing or generalized low back pain.

Depending on what I do and how stressful and event is, it can take me up to 3 days to recover to baseline. A long car ride will throw me over. Sitting in a chair getting my hair done may take me a day. All depends on how much I do. I try to use my home remedies to help me through a flare along with my 11 prescriptions. Laying down and using my tool box helps.

The POTS is triggered if I forget my heart pill. My kidney infections come back if I stop my daily antibiotics. I have a pain patch, an oral pain medication, heart meds, anxiety meds, nerve pain meds, antibiotics and sleeping meds.

My biggest tip is to research your doctors, research different treatments, accept any limitation and not push it because you feel guilty or because you feel like you are missing out. Basically reinvent yourself if you can’t to anything you used to be able to do and be happy with the little things.

All of this has impacted my life in a huge way. I can no longer do my job I went to school for, cannot do any of the outdoor things I did, do not go out and see friends, spend my days watching movies and basically watch everyone else do things. My friends have big stayed in touch with me. I decided to start my own business to network online and help people that way. That brings me joy and passion. It has kept me from doing everything including exercise and even watching my kids sports.

It has severely impacted my relationships. People forget about you if they don’t see you. It’s hard for my family to all of a sudden be caretakers all the time. My kids don’t have a “normal” mom that can take them shopping etc. or cooking.

I remain positive because I get to be around my kids all the time as they grow up and don’t miss out on that. My home business online has helped ton. I have hundreds of women and men cheering me on and I get to meet and help people all the time. I’m also super compassionate towards people’s illnesses and help them through a lot. Lot of people ask for nursing advice which is always nice.

My hope for the future is to make people more aware of the social isolation an illness can have and how to manage that. It has taken me 4 years to figure it out and I’m still learning. I hope doctors keep researching better ways to control pain if they don’t have options to “fix” the problem. Advancement in research and teaching would be very helpful. I wish there were more services to help families cope when you don’t qualify for aid. The picture of me doesn’t really show much. Just me on the couch in pain.

- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -

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