Hello, I’m Lisa, a 29- (nearly 30 arrrgggh) year-old, recently married Primary school teacher.
I have psoriasis and psoriatic arthritis.
In my story:
My diagnosis journey
How I felt about my diagnosis
Thinking ahead about starting a family
February – our wedding month!
My thoughts about pregnancy
My life now
My diagnosis journey
I was first diagnosed with psoriasis at 15, I was taking my GCSE’s and my Nan died very suddenly. I knew of psoriasis as my Dad suffers, along with his sister and my cousin. I went through the usual tar-based shampoos/ointments/lotions and sadly nothing has ever really helped, other than sun, sea and a stress-free holiday.
I first started getting painful joints around four years ago. I did a marathon night walk in London for Cancer Research, with my mum. By mile twenty, I was hobbling and near on tears with my mum encouraging me to finish. I did complete it; I could hardly walk by the finish, but I did it. I put my pain down to the cold and pulling a muscle.
Fast forward to six months later and I woke with a large swollen knee and leg (same leg as before). It was burning and had a strange sensation. I went to my local walk-in centre, with it being the weekend, and the GP told me that I had more than likely pulled it. I went home, only for it to continue for more than a week. I returned to see the GP I had seen previously. She measured my leg, ran bloods and decided it would be best to give me a DVT shot as she had concerns. My results came back that I did not have DVT and it must just be a strain.
I continued to have ongoing niggles in my knee but tried to ignore them, due to the doctors saying I had pulled it every time I went. I then went to bed one night and woke with a swollen, stiff and extremely painful elbow. I couldn’t even undress myself or brush my teeth. My loving partner, Sam, had to do this for me.
This went on for nearly a week, so I made an appointment to see my GP. Once again, I “had knocked it”, and he prescribed some pain relief. I knew for a fact that I had not knocked it, as I’m like a little peach; I’m constantly covered in bruises from tiny knocks.
Within three weeks my elbow had gone down, but who was to rear her ugly head? My “Brit-knee” as it’s now called. My GP had retired the week before, so I saw a new GP. This was in April 2018. He had taken the time to read my notes and within five minutes he said, “We need to refer you to rheumatology, I believe you have a form of inflammatory arthritis and it’s best that we treat it early on”.
How I felt about my diagnosis
I was gobsmacked, absolutely shocked and felt like my world had been turned upside down. How could I have arthritis? I was 28!
I went to have bloods taken then went home. I got home to Sam and cried my eyes out. He is the most supportive man ever and tried to calm me down by saying it might not be arthritis and to stay calm until I had seen the rheumatologist.
The following week I phoned the doctor’s surgery to ask for my blood results and I was told that they were showing abnormalities and that I needed to see a doctor to discuss them – 10 days later!! It was a hellish wait time; you worry from the moment you wake to the moment you drop off. When I saw the doc, he wasn’t overly helpful. He said I was showing inflammation and anaemia but everything else looked good and he didn’t think it was RA.
My appointment came through for June 2018, a week after my 29th birthday. It was then rearranged to August 3rd, 2018. April to August had been the longest wait ever, it was a total limbo of unknown. I think those four months were the hardest.
August 3rd – I went to the hospital with Sam. I had the usual height/weight check then went through to wait for my Rheumatologist. I was the youngest person there, hanging out on the granny ward. I now realise after finding Arthur’s Place that I’m not alone, although I continue to be the youngest sat in the waiting room!
I went into the room and explained everything to my consultant. She then did some movement checks and checked me over. She instantly said, “you have psoriatic arthritis, I don’t believe it’s rheumatoid arthritis. We have the option of sulfasalazine or methotrexate to start with to get the disease under control.”
Again, I was gobsmacked.
Chat about this in our Facebook group
Thinking ahead about starting a family
The consultant went on to explain the risks of sulfasalazine and methotrexate and gave me some leaflets. She injected my knee with steroids, sent me for more bloods and X-rays of my hands, chest and feet, then off I trotted with my leaflets on my disease and medication.
My fiancé and I were getting married in the February and hoping for a family not long after, so I wanted to discuss my options. I discussed the treatment options with Sam and my parents. We all felt that methotrexate wouldn’t be right at this stage for me; I had read that some people experience hair loss, hangover days and general bleeuugh feelings and knew that methotrexate for me would be short-lived, what with the wedding and trying to conceive.
I opted for sulfasalazine and a high dose of naproxen, I went back at the end of August to start my medication.
Sam spent his life researching ways to help and booked me into weekly yoga classes. These helped to keep me calm and I really enjoyed them, however, my Brit-knee did not appreciate it and after every session it would inflame.
By November I had been up the hospital for regular steroid injections into Brit-knee and my shoulder as this had seized. I felt that my treatment just wasn’t working. I couldn’t take the Naproxen as it was messing with my stomach. My lovely rheum nurse had run out of ideas because of my limitations on meds. She spoke with my consultant and they agreed to up my dose.
Dec-Jan was pretty good! It was a revelation, I walked like I had no issues and could climb stairs without wanting to cry. It was fabulous!
The end of January came, and it was time for my Hen Do in Bath. It was truly amazing, my family and friends really treated me. The alcohol did not like me, but a spa session the day we came home helped to relieve the pain.
February – our wedding month!
I was so concerned that I would flare and end up hobbling down the aisle. Sam had laughed it off and told me not to worry and that he would marry me either way.
Saturday 16th February 2019, our wedding day. It was the most beautiful day ever; we loved every second of it. It was so special to share our day with everyone we love. I couldn’t help but laugh during our vows at the “in sickness and in health”, he’s certainly done that!
Obviously with it being my wedding day, I had a few drinks (not many though!) and danced the night away to our amazing Beatles band. I had taken my low heels off as soon as the first dance was over, still by 9pm I could hardly walk, my knee was no longer there! It was one big fat tree trunk that was red and hot. I went to the bar for ice and the lovely lady looked at me like I was mental when she asked, “what have you done dear” and I replied, nothing, it’s arthritis.
I am a stubborn lady and would not let Arthur ruin my day. Yes I wanted to cry and I ached from head to toe, but it wouldn’t stop me!
Of course, our wedding photos also contain lovely bruises on my arm from having bloods taken. It wouldn’t be my wedding without bruises on show, haha.
The wedding is over, major blues, but we still have our honeymoon to look forward to along with the hope of a baby AND we’re going to Florida.
My thoughts about pregnancy
I have a few worries when it comes to a future pregnancy, motherhood and Disney!
• I worry that my pregnancy will be even harder than most women with the pain in my hips and extra weight on my Brit-knee. I have decided to wean myself off the medication as soon as I’m pregnant. Current research says it’s ok, but it will play on my mind.
• I worry about the birth and how I will cope. I know I’m a strong person and my pain threshold is quite high but it’s still on my mind.
• I worry about days when I’m flaring and how I will cope carrying the car seat, getting the baby in and out of the car and cot, changing the baby, walking and playing with the baby.
• I worry about passing my psoriasis and arthritis on to my children.
• I worry about going to Florida and how I will cope walking round the parks. I have emailed and been told to get a DAS card, even though I don’t see myself as having a disability. I feel like a fraud.
I think with any disease like mine, you have to try to keep a positive mentality. It’s flipping hard at times and some days I do want to stay in bed or on the sofa (and that’s ok!) I have found a big pregnancy pillow is great in bed when your knees are flaring!
Speak to your loved ones; Sam is incredible at spotting when I’m hiding the pain and will run around getting me ice packs, treats and pillows – he’s a star.
My life now
I continue to work full time with my little people, it can be really tough and some weeks I can’t get down on the carpet to teach them or read stories.
I try to keep my life as normal as possible; I never say I can’t do that because of my arthritis. I try to adapt or take things with me that will help. Packs that can be cooled or heated are always helpful, decent shoes- I’m always on the lookout for stylish, comfy shoes- give me a shout if you find some!
I enjoy going for dinner with my friends and family, spending time with my three nieces and love days out with my family.
Definitely always know your limits, if you’re feeling tired then stop for a cuppa and rest.
I am always hopeful for new research and remain hopeful that something amazing will come along in the near future. I am determined to raise money for arthritis research once my disease is under control.
For now, I’m concentrating on my new husband and our future plans together.
Mrs Azzopardi-Cleere x
