CIDP Awareness and my personal journey

CIDP Awareness and my personal journey Fighting an Autoimmune Disease Chronic inflammatory Demylating Polonueropathy. C.I.D.P .
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The good and the bad of my CIDP road . It's not a journey , it's a s**t show on legs. But one l'm great to walk again wi...
08/04/2025

The good and the bad of my CIDP road . It's not a journey , it's a s**t show on legs. But one l'm great to walk again with .
🥰 Tania

07/04/2025

Hi Everyone, just letting you all know my name is Tania . Given the reply comes from CIDP Awareness Page l thought l'd let you all know who l am .
As lve always mentioned, this is just my own personal journey. The videos and photos l upload are only mine own personal treatment days . I'm just wanting others with CIDP know l'm here for support also . And to help raise awareness to other's with this crappy disease. I get it , l get you , l see you 🥰 Tan

25/02/2025

Hi there , well it's been awhile since l've updated everyone. As they say no news is good new's. And we'll yes it is good new's. I get to finish plasma exchange this year. It's been 6 yrs of it , and given they said ld have it for 2 yrs l'm happy to be saying goodbye to it. I'm going to miss seeing the staff who've been with me since day dot . But lm so happy l've made friends out if afew of them .

04/06/2024

A huge thanks to the Kyle and Jackie O crew for making my mornings . Starting your day with a good laugh is a brilliant way to start treatment. Thanks guys for the chat on air this morning was great . Bloody Legends.

19/04/2024

A reminder this Blog / Page is my own personal journey. The photos l take myself , or my nurses and Doctors take them as l go along.

I can't offer medical advice, l can only share my own journey.

Every C.I.D.P patient's case is different. So please remember what l have available is what my Specialist's have carefully mapped out for me as l progress forward.

It's been a hell bender few month's. l've struggled a lot. Having a autoimmune disease doesn't offer you a hall pass on ...
19/04/2024

It's been a hell bender few month's. l've struggled a lot. Having a autoimmune disease doesn't offer you a hall pass on every day stress from society and it's normal expenses that go with it. Nor does it exempt us from other day to day problem's. So l threw the big girl nickers on and l've kept myself moving forward.

Today's treatment went well. But the leg pain is excruciating after it. Ice Packs , Heat Packs , Paracetamol and Rest. Ahh well s**t happens.

About a week ago l recieved some flowers from my health care provider Bupa. I'd been on the phone to a lady to adjust my insurance as l wasn't happy with it . l was having treatment during the call, she stepped up and made my policy fit me perfectly.

I've been with this particular provider for many many year's. l'm greatful to have them. These flowers made my day . Small gestures can often make a huge difference. So to Ranea, the lady from Bupa. Thankyou. You did make me smile.
And lm able to return to a very normal life after each infusion.

Just realised ld forgot to post my removed loop recorder that the Cardiovascular surgeon removed from my chest. Any wond...
07/04/2024

Just realised ld forgot to post my removed loop recorder that the Cardiovascular surgeon removed from my chest. Any wonder l hated having anything touch or be against my chest whilst it was in.

The whole process of treatment is sometimes difficult. One foot forward 10 back. Today was my first Plasma Exchange for...
03/01/2024

The whole process of treatment is sometimes difficult. One foot forward 10 back. Today was my first Plasma Exchange for the year. An 8.30am start ! Hmmm yes well it's currently 2.24pm and l'm about to have my gripper and plasma needles removed. A very uneventful day. Power port is blocked , Apheresis Device is blocked . Neither work , so it's off for a portagram , then possible angiostripper to unblock them both.

They Injected a product called Alteplase which is a thrombolytic agent approved for use in acute ischemic stroke, pulmonary embolism, acute myocardial infarction, and occluded catheters. In my case occluded port's. Normally after 1 hr it's all clear and systems go.. Today is not happening 😕
Well 2024 is still going to be a good year. It's just a hurdle l need to jump .

05/11/2023

You have great days , good days and days when you wake up and your body is screaming out . The electricity is absolutely ripping through your nerves. And your whole body has pain that's excruciating. Today's that day .

My body is in a phase where l can't take any pain relief as my liver needs a rest . So all l can do is heat packs , ice packs , and oil from Bali with massages .
But we get on with it .

Having an autoimmune disease like C.I.D.P tests you day in day out 24/7 . It's a constant battle with your body, yet whe...
02/10/2023

Having an autoimmune disease like C.I.D.P tests you day in day out 24/7 . It's a constant battle with your body, yet when you look in the mirror you don't see anything wrong. The spinal fluid tells the story , and the nerves destroyed send the electricity shooting around your body.

You learn to push through the pain even if it's so cruel and you feel you can't do it.

It's not worth complaining about otherwise the world would leave you behind in the cracks. You grit your teeth and pray the pain and shocks settle , you know the only other option is no longer having the treatment and giving up. But that isn't an option for me .

The doctors appointments, bloods , nerve conduction, ivig , plasma exchange, scans , physiotherapy. It's some day's too much. You sit in your shower and you cry. You cry until your fingers are wrinkled up. You get out , dry yourself off and get on with your day.

You walk to keep your legs moving , you do your face exercises in the mirror knowing tomorrow is another day, you lift your arms up and clench your fists because now you can. When people say " on bad days ring me " well if you did it would be every fu*(ing day and nobody needs to hear the same sh*t day in day out , anyone that says it's ok is not being honest. It's not about being strong , it's fight or flight. So you fight.

You get out and make memories, because you know that oneday your memory is all those you leave behind have left of you.

Like l've said once before , l don't think to myself " why me " because why not me . I'm no better than anyone else. I may not have the body of the girl l was before the relapse in 2018 , my chest might have scars left as a reminder of the surgeries , but my mind and heart are still the same ....

On Monday lm heading into surgery to have my loop recorder removed. A normal straight forward removal is day surgery for...
07/09/2023

On Monday lm heading into surgery to have my loop recorder removed. A normal straight forward removal is day surgery for heart patients. And most have been in for about 6mth before the removal .
Well 3.5 yrs in l finally get mine out. Unfortunately lve got 2 other ports either side . 12 procedures later l've got major scar tissue therefore mine is going to take longer to remove as it's embedded itself deep , and seems the scar tissue has gone into battle together. Anyway, l've got a week of IVIG ahead post Op so this will definitely assist my recovery. In the mean time between today Thursday and Monday l'm keeping myself stress free , clean eating , mediation between bloods and scans . The photo below l took in the surgeons rooms recently as he'd removed this one the day before and kept it to show me . As you can see by my own hand holding it they aren't small so l know why my chest was tender when hugged or touched.

It's been awhile since lve been able to post. But l'm just popping on to say afew word's. Unfortunately my treatment is...
18/07/2023

It's been awhile since lve been able to post. But l'm just popping on to say afew word's.
Unfortunately my treatment is for life , l don't get to have an end date for IVIG . And l need to say that although lm use to it, l still have all the ports in my chest. As well as the loop monitor. So it's excruciating when someone hugs me . And unfortunately it's often forgotten about by those around me. If l could compare the pain when lm hugged tight ld have to say " it's like a sharp knife stabbing me in the chest with shooting pain " given the tubes run all the way up my neck from them and over my clavicals the pain shoots up and over .
But l'm hoping this note is a reminder to people who know others who have Ports also . My plasma exchange port is large so it hurts alot for hours after being squished. Hope your all keeping well and for those other's in a CIDP journey , keep going your doing amazing.

P.S. Hugs are one of the things l miss the most xx

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A Glimpse into my New World.

Rare Autoimmune Disease. C.I.D.P an off set disease from GillianBarre. A Chronic Inflammatory Demyelinating Polyneuroathy that leaves patient's with debilitating disability that can also cause patient's the loss of mobility. A Neurological Disease that Specialist's treat with IVIG infusion of Human Plasma and Chemotherapy. Plasma Exchange and Steriods . Nerve Conducting studies show deterioration of perineal nerves. Treatment different in each patient. Patients are left Mentally Physically and Emotionally fighting a disease that basically starts from a bacteria eating away from the inside . Not visble to the eye many fighting this disease struggle , Its debilitating to the brain, the motor responce is delayed . Patient's are in constant pain , Numbness and Sensory Loss make it difficult to complete normal daily tasks as simole as showering , dressing and eating . Chronic inflammatory demyelinating polyneuropathy (CIDP) is an acquired immune-mediated inflammatory disorder of the peripheral nervous system. The disorder is sometimes called chronic relapsing polyneuropathy (CRP) or chronic inflammatory demyelinating polyneuropathy (because it involves the nerve roots). There is no cure however a Neurological and Oncology team alongside a Kidney Transplant Specialist team are working together whilst l personally am currently undergoing Chemotherapy, IVIG " Human Plasma " Steriods , with future Plasma Exchange and Stem Cell and Bone Marrow Transplant . For now l am unable to walk and have possibly a permanent disability to my right foot . My aim with this page is to assist anyone whom has been struck down like me some possible answers as to how we got it , what may happen later down the track, l have also agreed to even work with a medial team to help find bio-makers to diagnose earlier using my blood’s and results from all the studies.