‘He Told Me I Should Give Up Running’ People talk about being in their prime, In 2013 I was in my prime. My running had really taken off, my 5k time was sub 21m and I could run a half marathon in 1h:48m. I’d also got my dream job and I’d found love, everything was going my way. 2013 was my year! - It was also the year I found a lump in my neck. I was soon diagnosed with thyroid cancer. The day before they operated to remove the tumour and my thyroid, I went for an extra long run. I remember running with tears in my eyes, while telling myself I was fit enough to take on anything. I’d never heard of a thyroid, so I wasn’t fussed about not having one anymore, I just focussed on the thought of being cancer free. Complications in surgery meant I’d also lost my parathyroid glands, meaning life on extra medication. Since treatment I get muscle pains and cramps, particularly in my legs. I also suffer with fatigue, sluggishness and difficulty concentrating, as well as unexplained weight gain - great! I remember my doctor advising me that running is something I shouldn’t waste energy on anymore, I should give it up and store energy for everyday activities. He seriously underestimated my determination to run. Although I take meds three times daily to keep symptoms at bay. Sometimes I’ll have a day when no amount of pills can give me what I need to function. A stressful day at work, excessive travelling or a day of graft in the garden tires me out more the average 33 year old. These days I live with an illness that means I must take notice about where I spend my energy. I’m usually in bed earlier than everyone else. Why would I fight myself to stay up past 9pm if it meant I couldn’t enjoy a run the next day? I taught myself to listen to my body and focus my mind, and I’ve learned to take the right amount of time to train for what I want. And against my doctors advice - I still run. Since being cancer-free, I’ve completed 5k in 19m:31s and a half marathon in 1h:38m. Beat that cancer! I’m running and blogging every day in January. If you like what you're reading, let me know! I'll respond to all your questions if you leave them below!
And... it's done! The hospital is cutting corners and giving milk jugs now. Life with disability. It's about to get a little real, people. Radically accept. We all have bodies. Sometimes they malfunction or function differently. So many expressions of difference, so many bodies shunned, shamed, or ignored. I see my many places of privilege. Access to health care being one humongous one. It can still feel monumental. This is my fridge. This is my urine. Life. Yes I worry it's gross. But you are strong. You can take it. Don't look away. But also, don't drink the (ableist) Koolaid. #24hrurinecollection #hypopara #diabetesinsipidus #detailsofdailylife #lifewithillness #disability #sick #weallhavebodies #lifeisreal #lifeisbeautiful
#mayoclinic #hypoparathyroidism #hypopara #hypocalcemia #endocrine #endocrinesociety #gondabuilding #rochestermn
I decided to wear my T-shirt for my appointment today. I am seeing a spine doctor today. It’s such a cool shirt! An easy way to spread awareness. I was able to@play
piano this morning. One of the volunteers asked if he could video tape me while playing piano. I said sure. Received a lot of compliments. Even with long day appointments. It’s nice to take a break and play piano. My local clinic has one. I have to call sign up to play. But at Mayo it’s nice you can just play.
This week I was admitted into hospital due to my #hypoparathyroidism
having a bit of a wobble. I have felt so frustrated, a bit scared (if I’m honest), tired, and sad, along with just sick. I came across this pic and it’s helped clarify the week for me, reminding me to breathe. The monitors I was plugged into told me I’m a breath-holder without realising it. If I can encourage anyone right now, it would be just to take a moment to be still and inhale, exhale... I’m doing it too... . . . . . #hypopara #lifeafterthyroidcancer
2 年前發佈 this time I was getting ready for my thyroid removal surgery. Just a blip until it wasn’t. I’ve learned a lot in these 2 years since becoming hypopara. One thing I already knew was that I keep pushing forward and I’m very blessed. #hypopara #hypoparathyroidism
#hypopara #hypoparathyroidism #endocrine #parathyroid #hypocalcemia
I didn’t take this photo. But posting to bring one last Awareness from the conference. Most are patients in this photo. A few are Doctors. I’m in the front with black and white top. I’m so glad I went to the conference. I thought I had heard most of it. Clearly a lot has been learned in recent years. So thankful for the scholarship to be able to attend. With clinical studies stating in 2019! It was great to meet some of the Doctors in the field. I just hope I qualify for the study. Majority of HYPOPARA due to thyroid cancer. Only less than 7 in this group had it due to non surgical. Out of those 7 I’m even rare than those folks. However Harvard Doctor Mannstadt is working on developing treatments for us. Be a long while before they are ready for clinical trials. But still amazing the progress medical science has made.
I tend to stay away from publicly recording this part of my life but I’m sitting here, bored and pondering things. The red in the iv is only iron, not blood. It’s necessary due to my body not being able to tolerate any more tablets than it already does. (Shout-out to #hypoparathyroidism
). I’m so grateful to have access to effective treatment and skilful staff. #lifeafterthyroidcancer #hypopara #royalnorthshorehospital
Hypopara symptoms are kicking my ass today. Exhausted, everything hurts, my vision is blurry, and my feet are cramping painfully. On the plus side, I found a hypoparathyroidism forum today where I discovered that I should be able to claim exemption from prescription charges - should save me some money in the long run as I'll be on prescribed supplements for the rest of my life. #hypoparathyroidism #hypopara #hypocalcaemia #osteopenia
#hypoparathyroidism #hypopara #music #pianomusic
Entertaining two conference crowds the weekend of the 18th. I apologize for the background noise. The video will be unedited. I never know quite how to bow at the end. Anyhow I wrote these songs.
Featured reader Jaxon is almost 4 years old, and he lives in Australia!🇦🇺He is a very strong #HypoparaWarrior
!💪Thank you for being a wonderful reader, Jaxon!💙⭐️
#hypopara #hypoparathyroidism #hypocalcemia #endocrine #mayoclinic
My Doctor at Mayo Clinic approved this cue card. I love how simple yet every important info is on here. Some family do not have Facebook I thought I’d share here. This will be my last Awareness info about HYPOPARA until June 1st. Feel free to ask me anything about HYPOPARA. We can’t treat our condition with milk or dairy products. That’s one thing Doctor Levine made known at the conference. We do have a high calcium diet but not in replacement of medication. Feel free to ask! I’ll do my best to answer! I’m not a Doctor just 47 years of experience! Just glad we didn’t have to take a test this weekend! I felt like I was at medical school. But well worth it. I hope this brought awareness. For those who never heard of it.
I have a rare disease, acquired by surgical mishap in 2011. It is hard to manage, often a completely blinded tightrope walk. It can be rapidly fatal, and even in the best circumstances, is poisoning my body slowly. I also have a rare doctor who is tops in the world on this particular disease. She is only a 5 hour drive away. I am taking new, cutting edge medicine that helps. The injections cost many thousand dollars/mo. that is mostly covered by my insurance. I have an incredibly supportive family and community of friends. I just got back from the Hypoparathyroidism Association Conference, on information overload and grief for what feels like an unsustainable burden of management with dire and scary consequences. I also got to meet other patients who share some common ground and experience. I also met with dedicated researchers who clearly care about their patients. It's remarkable how grief, fear, and frustration, and gratitude can coexist. Holding hope like a live wire. #hypopara #hypoparathyroidism #raredisease #dialectics #grief #gratitude #community #support
#hypoparathyroidism #hypopara #endocrine #mayoclinic #nih
I normally don’t bring up HYPOPARA on this page. This is amazing we finally have our own awareness bands. Up until 2004 their was no info on HYPOPARA. Except two paragraphs in a 1950’s medical book. It has changed my life especially in this day in age. Pm me if you like to learn more. I have an amazing endocrinologists at Mayo Clinic. In Rochester, Mn. I also was under the care of Doctor Karen Winer for NIH clinical trial. Then Doctor Gafni the 2nd half. @so
blessed to know these specialists.
All the way from 🇩🇰Denmark🇩🇰 our spotlight reader Anton shows his courage with a dinosaur t-shirt!🦖 Anton is a Hypopara warrior, and we are so happy he is an #ArianaRoseAStoryOfCourage
**SOLD**Finished. My first ever portrait, inspired after doing a painting for my good friend @vanessa.puopolo
Work in progress. **RESERVED**
#mayoclinic #rochestermn #minnesota #hypopara
Another person with my condition was at Mayo same time as I was this week. We met up a couple of different times. We both have HYPOPARA. It was neat being able to meet. What a great place to meet to! Looking forward to our medical conference in October for HYPOPARA.
ITS IN......ITS AMAZING! I'm excited haha I just did a injection and it didn't hurt cos I now inject into the wee hole in the port in my tum 😁 I don't have to stab my skin 4x a day I just whack it in this an I'm sorted yeyyyy I'm scared it's gonna fall off but I've been assured I should be fine lol I've been asking and pestering my consultant for this for so long and it's gonna do the job till we win our fight to get me the pump so I'll be getting the meds pumped into me all day but that's a fight cos of funding an stuff but I'm happy for now with this 😁 what's kinda strange is that I now have 2 ports for meds in my body.....I have my portacath in my chest for my infusions and the iport in my tummy for subcut injections it's kinda odd to have things like that in your body but it will help me day to day an they help me have a better life quality 😊 #iportadvance #makesmylifeeasier #chronicillness #raredisease #aps1 #hypopara #addisonsdisease
My hand shakes, I’m tired and weak. Looking at me, no one knows that a young woman can be so ill and walk around looking normal, and so they don’t understand. Life with hypothyroidism, hypoparathyroidism, and most importantly hypocalcaemia, is days like this. Shaking hands, spasms, zero energy. The inability to hold my hand perfectly still as I take the picture, and the knowledge that I still have yet even more medicine to take today just to stay alive. It’s hard, but I feel blessed that I’m even here, and that I live in a day and age where these conditions won’t just kill me. I’m shaky, but these things won’t keep me down. #blackandwhitephotography #hand #photography #personalstory #shakyhand #hypothyroidism #hypoparathyroidism #hypopara #hypocalcemia #perspective #contrast
I think people here 'low calcium' and think it must mean you get brittle nails and more fractures than most people, but it is so much more than that. . When my calcium drops below a certain level my brain stops working, I struggle to find words and how to form a sentence. I lose the use of my hands and forearms and my calves spasm so much that walking is painful. I get pins and needles in my eyes and mouth, and in a tight band around my stomach. . Hypocalcemia can cause your windpipe to spasm and suffocate you, it can cause your heart to stop or put you in a coma. . It's in many cases a lifelong battle to keep your levels in a safe range. I've said it before and I'll say it again, living with Hypopara is like living with diabetes without insulin or a home tester. . I'm home now, levels seemingly stable, more bloods done tomorrow and a new action plan in place. Feeling a lot better but soooo tired 😴 So a nap is in order! Unfortunately I'm not going to be able to cut dairy out of my diet to the level I wanted ☹️ but I have to keep my calcium in a good range and I guess I got more calcium from cheese than I thought 😂 🧀 . . . #hypocalcemia #lowcalcium #hypopara #hypoparathyroidism #lifewithcancer #thyca #thyroidcancer #cancerrightnow
I'm totally and utterly wiped out today.....had a solid 4hour sleep last night without waking up then I was back to being up an down till morning so that's a plus from the last couple of weeks.....i had the dietician today and then went and visited my granny then went to Morrison's for some shopping with my mum then the occupational health lady came out to give me my new walker and a stool for the kitchen so I can sit while I cook.....then I meal prepped so much healthy diet food/meals and my packed lunch for hospital tomorrow too.....now my back and legs are agony and the cocktail of opiates I take arnt even touching the sides and cos i had salad for lunch n not processed carbs my levels have crashed and I had pins and needles over my face and arms and spasms uuggghhhhhh living a normal life with chronic illness is so hard I really do struggle every day even on good days I struggle but hopefully getting referred to the physio, pain clinic and the gym will help maybe and losing weight will defo help put less strain on my thinning bones every time I move......I did good today though I managed to be done with the dietician like I've came on leaps and bounds from last year when I wasn't eating an what I was eating I was vomiting back up all because of stress of being in an abusive marriage but I'm eating and digesting an everything now she just said calm down on the junk so I'm doing that on my own and joining slimming world this week with my mum, auntie an gran so we can do it together and get healthy 😊 I'm proud that today I don't need to see the dietician again cos I'm waaaayyy better than I was and I managed to cook lots of stuff 😁 just got to get used to my bright red new walker and try am not sing postman pat while I'm out LMAO #chronicillness #spoonieproblems #chronicillnessproblems #pushedmyselftoohard #slimmingworld #pinsandneedles #hypopara #addisonsdisease #apstype1 #endocrine
Went for a walk with my mum today down levengrove park it was nice cos it was all blowey an not scorching lol I just love living back here it's my home and I like that we have a castle an stuff lol I think today was the furthest I've walked in ages so quite proud......I feel dreadful though since the walk I just feel exhausted and my body just doesn't want to move my limbs feel so heavy....my mind is foggy and slow today too which is typical Addisons disease symptoms of a bad day or flare day I felt dizzy and shakey all day but my blood sugars were fine so don't know what was going on but I have to just chalk that up to Addisons too 😔😖 this disease is invisible no one can see how I feel I felt on the very very edge of tears all day like I could cry now but I don't know why it's just that really emotional feeling you get in your chest and a lump in my throat so I've been terrible company all day and I'm sorry to my family for being bizarre all day but it's just so hard to put into words how I feel inside when no one can see it.....it's hard to have no control of your body an emotions and cos I can't sleep just now that goes 100% against me versus a normal bodied person ......I just feel deal and it's all my endocrine systems fault...or lack thereof actually that's why cos my whole endocrine system is dying bit by bit cos my own body is killing it and I only have like 1 thing left that works and if that dies (which is apparently pretty much a given) I'll also have type 1 diabetes sooo that's fun.....NOT! If you think I'm acting bizarre today hell wait till I have t1d to cap it off I'll need locked up lol #raredisease #addisonsdisease #badday #spoonieproblems #chronicillness #adrenalfailure #hypopara #autoimmunepolyglandularsyndrometype1 #autoimmune #endocrinesystem #ijustcanttoday #istillwentawalkthough
This was a practice run and I’m glad I did it because I needed it. Butterflies are not my strength, but this one got me in the groove to paint a neat “watercolor” butterfly for @vanessa.puopolo