#hypopara

320 posts

Today was full of bests. I ran with Kevin Best, Lucy Best, David Best & Hannah Best. We then had the best coffee served by Amanda Best while Annie Best had cuddles with Matty 🐾 I also knocked 31 seconds off my parkrun personal best! Oh and it's day 54 of my running streak! 5k a day baby!! 5k in 21:14 🥇👌🏃🏼 Today was the best!! #happyrunner #happyrunning #parkrunday #parkrun #parkrunuk #saturdayrun #redder #runnersofinstagram #secretrunningsociety #redjanuary2019 #runstreak #day54 #runblog #run #runeveryday #thyroidcancer #runningwithanillness #hypocalcaemia #hypopara #hypoparaathlete #runningattitude #runspiration #inspiration #best #bestdayever #personalbest #rothwellparkrun #springheadpark
Today is the 50th day of the year. I know that because today is my 50th run of the year. Before work this morning I ran with a friend and colleague. My job was to pace marathon-man @cooljoolz so he could achieve an outside sub 25 5k. Today we enjoyed dashing around Windsor Castle and along the river Thames. We dodged swans and due to poor planning we ended with an up hill sprint to end! And Julian got his sub 25 with seconds to spare! What a way to celebrate my 50th runstreak. That's two achievements between us and we've not started work yet! #happyrunner  #happyrunning  #tuesdaymotivation  #redder #runnersofinstagram  #secretrunningsociety #redjanuary2019  #day50  #runblog  #run #runeveryday  #REDJanuary  #hypopara #hypoparaathlete #runningattitude #runspiration #inspiration #5kaday #5kperday
This is totally my favourite parkrun, based on the shape of the course! 😏... 🍆 I love visiting new parkrun courses. It means I can set a personal course time, then beat it next time! Although this one was quick enough! I did it in 21:55 for 5k 🥇 #happyrunner #happyrunning #parkrunday #parkrun #parkrunuk #saturdayrun #redder #runnersofinstagram #secretrunningsociety #redjanuary2019 #day47 #runblog #run #runeveryday #thyroidcancer #runningwithanillness #hypocalcaemia #hypopara #hypoparaathlete #runningthroughcancer #runningattitude #runspiration #eggplantemoji #willyrun #drawmyrun #rude #dicking #dickingaround #rothwell
‘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!
No pensé q iba a llegar a ver esto. Medidor de calcio como de glucosa. Por ahora solo el aparato sale 10 mil uss en Usa. Me verán medir.. Algo llega. #calciobajo #hipoparatiroidismo #hypopara #medidordecalcio
Another crash, another infusion. Wee hours of boredom in the ER. Thank you charged phone. And the doctor asks, what do you, the many-year expert on yourself and your rare disease, think of this plan? Thank you, Doctor! That's good medicine. #knowyourselfbest #scarycrash #calciumcrash #lifethreatening #crappydisease #raredisease #hypopara #nosleepinsight #callbutton #hospitalgown #beautyinboredom #closeupphotography #emergencyroom #lefttomyowndevices
Sorry for my radio silence, I'm currently hypercalcemic which means my desire to sleep every hour of the day and brain fog is at 100% (whereas my appetite and awareness is at 0%) 😑 I always need a huge rest after the holidays, being busy literally wipes me out 😴 . . . #chronicillness #thyca #spoonielife #cancerblogger #ukblogger #nebloggers #hypopara #hypercalcemia #lifewithcancer #cancerrightnow #whatsicklookslike
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
Somewhere between the Flying Nun and a Texas 10-Gallon. I am a woman of many hats. #24hrurinecollection #kidneys #hypopara #detailsofdailylife #meanwhilebackatthelab
Hypoparathyroidism is a #raredisease with multiple symptoms. Meet Conor, living with the genetic form of #hypopara . He shares his patient journey along with others living with this disease on hypoparaanswers.eu. Follow the link in the bio to watch their stories. #hypopara #hypoparathyroidism #familylife #raredisease #diseaseawareness #patientgroups #nonUK #nonUS
For the first time, #hypopara patient Fiona shares her story with us about how this #raredisease affected not only her health but her family and work life. Watch Fiona’s story by following the link in the bio. #hypoparaanswers #hypopara #hypoparathyroidism #familylife #raredisease #diseaseawareness #patientgroups #nonUK #nonUS
Il est des jours plus compliqués que d’autres où les cairns sont difficiles à trouver. PTH, tu me manques depuis 11 ans. Mais je m’accroche! #hypopara #hypoparathyroidism #alfacalcidol @EpiHypo @HypoparaFrance #hypopara #hypoparathyroidism #maladiesrares #raredisease #diseaseawareness #rare2aware
“I felt like I was no one, that I had no life anymore.” Natalie was diagnosed with chronic #hypopara following thyroid surgery and since diagnosis, many aspects of her life have changed. Hear Natalie’s first-hand account on hypoparaanswers.eu, (follow link in the bio) #hypopara #hypoparathyroidism #familylife #raredisease #diseaseawareness #patientgroups #nonUK #nonUS
#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
I can always tell when my calcium is lower than normal, but the Chvostek sign is always a good indication too. #hypoparathyroidism #hypopara #chvostek #hypocalcemia
Some may cringe at this or think I need mental help..but the truth is..since my body has fought to heal itself and has been in pain for the last 6 years, it has next to no time for “happy”. You know, the kids do something amazing and a feeling arises inside of you?! Yea, that part of me has been buried so deeply, or even neglected because my body has a more important job..to heal itself. So my body isn’t naturally excited or enthusiastic 😞 anymore. So weird to say out loud. 1-you may not understand 2-you may think I’m crazy But the fact is, God has carried me..carries me still🖤 and when I physically can’t feel “happy” as I once unconsciously knew it...He gives me JOY. Joy that I don’t have to do this alone. Joy that He saved me and I’m eternally grateful! Joy that even though I don’t “feel” it, there is so much to be thankful for! If you can relate to me, know you’re not alone! These holidays quickly approaching will be the best yet🖤 You are loved and you’re not crazy. You’re human🖤 Photcredit @seekingservanthood #joyunspeakable #whenyoudontfeelhappy #joyremains #fightingautoimmunedisease #strongertoday #godisourstrength #hypoparathyroidism #hypopara #autoimmunedisease #autoimmunedisorder #holidaysarehere #joyishere #thankfulforfamily #iamhuman #thankfulforthelittlethings
Being watched is double-edged. Glad to be monitored and cared for. Disliking the feeling of shame coming with surveillance. I hate coming to the ER. Ugh. Grateful for friends and family. And the ER team's watchful eye today! #raredisease #hypopara #hypoparasucks #hypocalcemia #danger #calciuminfusion
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.
Hippocrates had it right: do no harm. Sitting on the parchment exam table scroll evokes a feeling of negotiation for wellness and sovereignty. Medicine has a lineage, as does my body. Respect. My treaty on the parchment says, doctors and I agree that we are to be a team. That I am the expert in me. That we will all be our best listeners, and that not knowing will be ok. #patientpatient #teamwork #patientexperience #sick #butyoudontlooksick #chronicpain #medicine #nomagicwand #nomagicpill #donoharm #lookingforanswers #itsoknottobeok #itsoknottoknow #raredisease #hypopara
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
This also struck me as funny and a little accurate:). Thanks Warda! #hypoparathyroidism #hypopara #calez #calcium
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
Can't believe I'm 2 months into my PhD already, where has the time gone 🙈 . I don't want to blow my own horn, but honestly somedays when I'm having a really bad time healthwise, I realise how much I have going on, that I could use as an excuse to do nothing. I could easily say well I have cancer and 3 chronic illnesses / disabilities and therefore will sit and rest all day everyday . But I don't and I never have because I don't want anything to stand in the way of achieving my dreams and goals. . You'll never hear me being a victim of circumstance, because I honestly believe life is what you make of it ❤️ . . . #tbt #graduation #thyca #cancerrightnow #lifewithcancer #interstitialcystitisawareness #interstitialcystitis #painfulbladdersyndrome #mastcellactivationdisorder #hypopara #hypoparathyroidism #spoonie #spoonielife #chronicillness #chronicpain #youngcancer #cancerinyour20s
Oh yeah! Got myself some Sandocal today thanks to my favourite pharmacy assistant! No sucking chalk for me this evening. It's the simple things in life, eh? #cancermama #cancerconvalescent #cancercrew #hypopara #hypoparathyroid #lowcalcium #sandocal #calcium #calciumsupplement
#hospital #lupuslife #lupuswarrior #lupus #hypopara Don't keep your dreams in your eyes. They may drop down as tears. Keep them in your heart so that every heartbeat reminds you to fulfill your desire.
#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.
I cried for 2 years straight. I cried myself to sleep for 2 years. And God never decided to abandon me because I was “being a baby “ or “holding on” to the old me. Instead..He held me tighter. He sang over me. He wiped my tears. He cried. He prayed for me. How do I know?! Because I am here today. I am here today full of hope. And learning joy along the broken road❤️ #lookup #lookupchild #morethanaconqueror #warriorprincess #godinme #lethimdohisthing #iamhischild #joyunspeakable #hurting #healing #chronicillness #raredisease #hypoparathyroidism #hypopara #hypoparathyroid #autoimmunedisease #fighter #survivor #onwardandupward #bigthingscoming
My legs cramp easily..Something to do with calcium depletion 🙃 One thing I won’t give up...wearing my heels❤️ I may be hurting some days😂 but I’m gonna hurt cutely🤪 Another score find from my local @rossdressforless ! Business ready. Church ready. Date ready. All you need is a super cute pair of shoes to take any outfit to the next level! #classyheels #highheelslover #prettyshoes #femininestyle #girlystyle #wearprettyshoes #prettyheels #dressuptime #classyandsassy #flatsorheels #hypopara #hashimotosdisease #survivors #raredisease #wontstopme #becausejesus #heholdsme #blackheels #wardrobestaples #classyheels
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 #chicago Chicago Illinois HYPOPARA conference. This is Dana board chairman of HYPOPARA association.
#hypoparathyroidism #hypopara #endocrinesystem #endocrine #hypocalcemia #medicaldoctors #hypoparsthyroidismassociation #mayoclinic #nih #nationalinstituteofhealth With James Sanders from HYPOPARAthyroidism Association. I don’t normally mention this except once a year. With our conference weekend. Wanted to bring awareness to calcium condition I have. I have known James since the beginning. His wife couldn’t make it this year. He helped me meet Doctor Karen Winer from NAtional Institute of Health. (NIH) Also my current Doctor Bart Clarke of Mayo Clinic.
#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.
5 years fighting an autoimmune disease. 2 years suffering with hair loss. 1 year. 1 year using my favorite shampoo ❤️ And the best part..it just keeps getting better! If you suffer from stress, postpartum, or an autoimmune illness, dm me! Fighting these beasts is hard enough. Your hair doesn’t need to suffer too😳 Let’s bring back your luscious locks! #hairloss #hairlosssolution #favoriteshampoo #monatbeforeandafter #autoimmunedisease #fightingautoimmunedisease #hypoparathyroidism #hypopara #luscious #luscioushair #fullerhairfullerlife #fullerhair #thickerhairplease #thickerfullerhair #postpartumhairloss #stressedout #healthyhairjourney #fighthairloss #healthyscalp #healthyscalphealthyhair
#ArianaRoseAStoryOfCourage brings smiles to kids in children’s hospitals all over the world, including @childrensatl !
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 reader!
Dags att lämna in massa använda sprutor och få ny tom hink på apoteket. Dessa små sprutor och andra mediciner är vardag för min dotter som lider av en sällsynt sjukdom. Min kämpe❤ Någon därute som har ett barn med samma sjukdom i Aylas ålder 7 år som vill prata? Har en jämnårig i Danmark men inte hittat nån i Sverige. #hypoparathyroidism #sprutor #sällsyntsjukdom #parathormon #mindottersvardag #kämpen #mammaskämpe #minälskling #drottningsilviasbarnsjukhus #underforskning #hypopara
Pysslar så smått med att få iordning....Men min kropp är inte med mej idag....har nog varit lite för mycket sista tiden💖💖💖 #eds #hypopara #diabetes #blodsjukdom #diskbråck #jävligt trött
**SOLD**Finished. My first ever portrait, inspired after doing a painting for my good friend @vanessa.puopolo
Work in progress. **RESERVED**
Testat oxidering på silverarmband med peridot, topaz och lite 18k. Gick lite trögt, som det så ofta gör nuförtiden när Hypoparan slagit följe! 🤔 #silversmithing #handmadejewellery #handmade #silversmide #handgjort #hypopara #hjärndimma
#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.
I'm reopening my Etsy shop soon with some exciting things for spoonies ❤️ . I'm also planning some Christmas things, because let's be honest Christmas starts in August 😂🎄 . . . #watchthisspace #underconstruction #chronicillness #chronicpain #disabled #invisibledisability #cancerrightnow #cancersucks #etsy #interstitialcystitisawareness #painfulbladdersyndrome #hypopara #asthma #thyca #mastcellactivationdisorder
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
Date night 💋 Managed a full 2.5 hours outside the house 🙌 . . . #hypocalcemia #hypoparathyroidism #hypopara #lifewithcancer #cancerrightnow #thyroidcancer
#teasnob so went for a #coffee Confirmed my special status #suchfun #invisibleillness #hypopara #hypothyroidism #raredisease #gettingonwithlife #livinglife going to enjoy fun day with family. How are you going to enjoy your day?
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
*Werbung wegen Personen/ Markenmakierung* Hallo Ihr Lieben💕 Hier seht ihr zwei weitere Fotos von gestern. Warum ich genau diese zwei Bilder ausgewählt habe? Weil man auf diesen Bildern genau sieht wie ich mich freue. Für die meisten ist das denke ich normal, dass man immer Strahlt, wenn man z.b so über ein Stoppelfeld galoppiert. Bei mir ist es leider nicht immer so, dass ich Freudestrahlend in den Stall fahre. Seit ich vor 2 Jahren mein Pferd verloren habe und ich Mitte letzten Jahres auch noch erfahren habe, dass ich eine ganz ganz seltene und nicht heilbare Krankheit habe, da ist meine Lebensfreude dann noch mehr in den Keller gefallen. Mein Pferd war 16 Jahre in meinem Besitz und ich denke jeder, der sowas schon mal erleben musste, weiß wie sich das anfühlt, wenn der beste Freund einfach für immer weg ist.😢 Ich habe Puk zu verdanken das ich überhaupt noch reite. Er hat mir geholfen trotzdem weiter zu reiten und er zaubert mir doch manchmal ein Lächeln ins Gesicht❤ Und ich habe die besten Freunde im Stall und den aller besten Freund der Welt , die alle immer hinter mir stehen❤❤ Ich werde euch gleich noch das Video von Gestern mit der Drohne auf dem Stoppelfeld zusammen schneiden 💖💕 #horse #scheckenpower #pferde #reiten #dressur #springen #photos #photographer #pferdefotografie #horsesofinstagram #horsephotographer #Pferdefotos #Pony #ponylove #pferdeliebe #pferdesport #equestrian #horsepower #dressurreiten #springreiten #Galopp #pferdemädchen #stoppelfeld #horsephotography #drohne #djimavicpro #nikon7200 #eskadron #hypopara #hypoparathyroidism
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
Oh and heres my stencil I did today. I'm still working on it. This symbol represents my condition called Hypo-parathyroidism. #hypopara #chronicillness #drawing #art
Heres another drawing I'm working on today. Its the symbol for Hypo-parathyroidism. I'm also going to make this into a keychain with "Shrinky dinks". #hypopara #drawing #chronicillness #keychain #hypoparacanada #art
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
Rose and I are spending the next month away staying with family in England - here are all the drugs I've got to keep me going! #pills #medication #hypopara #hypoparathyroidism #chronicillness #chroniccondition #calcium #nhs #cancermama #cancercrew #cancerconvalescent
Gettin twitching on the bottom of my foot this evening... The life of low calcium! #lowcalcium #Hypopara #chronicillness
Home finally ❤️ . Calcium has bumped right back up. Some more tests are being run on my bloods to try and work out why my calcium and vitamin D have suddenly started dropping much lower than usual ☹️. Yesterday's levels were almost as low as after my first surgery! . Now time to rest and eat all weekend before my urology investigation surgeries on Monday 🙈 . #norestforthewicked . . . #hypopara #hypoparathyroidism #hypocalcemia #calciumproblems #cancerrightnow #hospital #hospitallife #painfulbladdersyndrome #interstitialcystitis #infusion #nhs #lifewithcancer #cancerblog #bloggerlife #blogginggals #healthblogger
#Hypoparathyroid #Hypopara Awareness Day. Learn more about this rare #hormone condition on our website http://ow.ly/ywIb30kiiMj
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