Awareness is the Key ~ A peek into my personal life...xoxox
by Jodi~Lynn on 03/08/16
Good Morning ~
Today is the day we celebrate the ground hog coming out of the shadows...but today is also the day we try to take Rheumatoid Arthritis out of the shadows too. I poke fun at myself a lot, write funny status’, call my self t-rex but you all don’t see the TRUTH behind this horrible journey that I have been on for 2 years. PLEASE KNOW - I am NOT writing this for sympathy -- But for the FACT alone.. It can happen to anyone; and it is FAR from just a little “arthritis” pain... Today - I think I will give you a peek into what this DISEASE is really like for us. Yup - I, myself, always thought of Rheumatoid like regular “arthritis” ~ never really understanding the impact and the consequences that one has to go through. One day back in March 2014 - I literally went to bed “Normal”..and never woke up to “Normal” again. At my age, It was hard to comprehend that the woman whose son called her “man mom”, doing everything from picking up a stuck atv,( yes, picking up), able to do anything he needed me to do ~ was crying in the bathroom because I couldn’t dress myself, brush my teeth, do my hair. My son has helped me get dressed, take my shoes off, open my meds etc Childproof is now our enemy! LOL - NO mom wants her son to see her like that.My mom - having her own issues, having to come help me because I was stuck in the tub or blowdry my hair..I couldn’t lift my arms up ( hence T-Rex nickname) without screaming in pain and having them “lock”. my wardrobe went from my fancy high heels to blinged out canes and a brace for every part of my body you could imagine. I still love my heels, but they don’t love me..LOL --- My legs were basically the same ~ Swollen, bakers cysts, excruciating pain - and Everyday - a NEW pain, a NEW issue would present itself. Waking up in the morning and NOT being able to get myself out of bed- arms, shoulders, frozen to my side. What used to take me 10 minutes, now takes me about 2 hours. Often this disease is misdiagnosed as fibromyalgia, Lyme, Lupus, etc....as with me - I was misdiagnosed with co-infections from Lyme for over a year. My daily routine consisted of 800 mg of antibiotics a day which in actuality, did nothing but allow to let this disease seep deeper and deeper into my body. I was in so much debilitating pain for so long - I was trying to accept that as my NEW normal...who the hell can do that? When we were blessed enough to find a great RA doctor, after a 3 month waiting period - he put me on prednisone. No other doctor had ever done that. All the emergency room visits, or trips to the hospital because the pain once in my leg literally made be pass out, they NEVER looked at RA..just gave me a painkiller to get by. I took the prednisone and within 2 days..I felt “normal”..I was like a maniac. I cleaned, I was able to reach up high, I had energy - It was near Christmas when we first moved into our home and i felt so blessed..a Christmas miracle in my eyes..YET - going to bed every night ( which was awesome because i hadn’t slept an entire night in months) and knowing this feeling of me being me again - well, it was temporary. It was and IS like living in a nightmare..I was scared and am so afraid because you never know if that is the last minute you are “normal”. I am a tough girl, independant...I went/go to work everyday regardless of how bad I hurt. I am stubborn to boot so asking for help back then..or even now, is a problem. The doc went through the process of bringing all the swelling down in my body and we were able to control the disease again with a medication. I knew then, again, only temporary. Your body begins to get immune after a year or so. There’s a trade off though - I take this medication so I can function, yet the medication in addition to the disease - is taking away my eye sight, thinning and whitening my hair, ruining my kidneys and it known to have cancer causing side effects. It is actually the less invasive medication out there for this disease. You are literally taking low dose chemo drugs - everyday! So even though i am up and going, and slowly going - I am happy to be...yet in the back of your brain, you are still dealing with the fact that you will get sicker...if NOT from the disease...from the medication you need to function. All RA patients are different. It presents itself different. Some people can make diet changes and that helps, some don’t need the tough meds, some are on infusions, some - have died. There is no guide book. No rules. The biggest memory I have about when I felt the LOWEST during this journey was I was hurting and “frozen” so bad, i was in the recliner. Todd & Dev had found a beautiful house right by the water and Todd always said the water was good for my soul. He made that happen!! Here is this awesome guy, who within 3 months of meeting a girl, found himself having to help dress this girl - poor guy. Who would want to stick around for that? Yup - that stays in your brain too!! Anyway - The slider curtains were drawn closed so I couldn’t see the water, but i was stuck in the fetal position, arms froze, staring towards closed curtains. I couldn’t even roll myself around..He comes home from work and see’s me “staring” at a blank wall...(sad thing was, I had been there for hours. My mind was racing..and disgusted with myself) ~ without a word, picks me up and moves me so I can see the water - he let the sunshine in..It was like a million dollars for me at the time - yet at the time - it was the worst feeling knowing I needed someone to HELP me. I don’t like asking for help - from anyone - never did. This disease if anything, has made me realize, that we are all NOT the super hero’s we want to think we are. Being positive about life - feeling blessed regardless but it is a fight - Everyday... It’s a fight from yourself, a fight with yourself, a fight with the pain, a fight...fight,fight, fight...and it is exhausting. ( mentally and physically) and to think....... I thought it was just SIMPLE ARTHRITIS........Simple arthritis. Things that make you shake your head or you would cry, you have to add humor to it...I got in a battle with a deli bag! I could NOT pull apart the plastic zipper thing. It took me over a half hour to get the microwave dish back into the microwave last week because my arms couldn’t go up that high. Devin and Todd used to bust my balls by holding my coffee cup up high on me..we laugh - what can ya do?? Laughter - It’s about the only thing I know I can still pull off. What I let people see and how I present- well. it is like living a double life. I belong to some support groups and I have met some “lifetime” new friends who suffer as well. It is amazing when you see the strength and it gives you strength....most people couldn’t survive a day but we have NO choice. We all look great...our makeup, hair, going to work, being moms and significant others, chores, responsibilities - we can not NOT do it...but be aware....we cry ----- constantly-- you just never see it. The disease is also classified as an autoimmune disease because certain immune cells malfunction and attack a person's own body. Meaning our good cells are attacking our bad cells..but they get confused...like kicking our own asses. We deal with fatigue, brain fog, fevers, insomnia, depression, dry eyes, dry mouth, loss of range of motion, balance, dental issues, joint deformity, flares, remissions. pulmonary fibrosis, pleural effusion (excessive amount of fluid in the lungs), nerve problems, gastrointestinal complications, skin complications, and kidney disease and shorter life spans. That's just a sampling from a more extensive list of possible systemic effects which can occur with arthritis and related rheumatic diseases. In fact, extra-articular manifestations can develop even when there is little active joint involvement. “There are over 100 types of arthritis. Systemic involvement is more likely with inflammatory types of arthritis. For example, chronic systemic inflammation can be indirectly linked to causes of death in rheumatoid arthritis due to serious infections, cardiovascular disease, lymphoma, and accelerated atherosclerosis. Systemic disease is serious. Bringing inflammation under control is essential. “ Osteoarthritis is not considered a systemic disease because it affects only the joints and not other organ systems. So - as we tgo about our day today - Please give attention to the groundhog...but please - Give ATTENTION and AWARENESS for this horrible disease..There is no cure.....but there is HOPE in slowing down the progression in some of us...?