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Madsam Neuropathy Support Group, Okotoks, AB (2026)

09/06/2024

I haven’t posted for a very long time but I thought this was a great time in my MADSAM journey to post again.
First off, I hope those that follow me are doing well and each day is bringing new and better things.
I am writing to say that my first six years at my current hospital (Day Medicine specifically) have been nothing short of amazing and I couldn’t feel more loved and cared for. I will be forever grateful to my nursing family for their kindness and support. They truly have such an incredible purpose and I just honestly can’t say enough good things about them.
I have however been accepted into the SCig program and got my training this week to do my infusions on my own from home. This is a great opportunity for me and my family and will allow for much more flexibility and better time management.
I will not say there’s no pain or discomfort, I won’t say it’s easy…nothing worth while is easy in my opinion. I will say this however, if you’ve been offered SCig, have researched it or are even just reading about it through me…please know that it’s an amazing opportunity to not only learn more about your disease and how to control it, but it allows for travel whenever you please (up to 3 months), provides far more regular dosing for better overall health, there are fewer complications and side effects, plus it helps ease the burden on our health care system.
Everything is provided for the home infusions and the training was simple and very hands on so I basically did everything myself from the beginning.
If you or a family member requires IVig infusions, and you have the capability of doing them from home or have a caregiver that can do it for you, please consider this option and give the hospital appointment times to those that don’t have a choice and must get hospital care.
Take care and I’ll update later on how the infusions are going from home.
This week was week 1…a new adventure awaits!

06/04/2023

I got this 156 piece Emergency Kit for free today! This kit has a blanket, light stick, eye wash, burn cream and other great stuff! We also learned some good fire safety info. They are giving them away for advertising purposes. Click and take this 90 second survey so you can get one!🔥

https://www.surveymonkey.com/r/tccal2403

Ask me how you can get yours free too! Let’s face it, we all need this in our vehicles!

05/17/2023

I have reached 100 followers! Thank you for your continued support. I could not have done it without each of you. 🙏🤗🎉
For such an extremely rare disease, this is a huge achievement and I hope we can all continue to support each other! It’s not always easy dealing with something when you feel like no one understands how you feel or what you’re going through. But there are people out there that understand…we are right here!

03/13/2023

Had another round of treatments last week and it went very well. No bruising this time around and as usual my nurses are the most amazing support I could ask for!
For those of you out there undergoing treatments, please be sure to take time to thank the nursing staff each and every time you go in.
They become like family as you continue to see them over and over again, treatment after treatment and if you give them the love and respect they deserve, you’ll receive that love and respect back!
My nursing staff, each and every one, have always treated me with kindness and the utmost compassion from the moment I stepped foot in day medicine because I always went in the mentality knowing they had my best interests at heart.
I remember to say a special thank you each and every Christmas because to me it’s important to show how grateful I am. They give me life…they are literally extending my life with each treatment they provide and that I cannot repay.
But I can say thank you in so many other ways…so to those out there getting treatments, always thank your nurses!
And a very special thank you to my beloved nursing staff. You are loved and appreciated each and every day!
Be blessed everyone and have a wonderful week!

03/02/2023

Well I’m healed up nicely just on time for my next round of treatments starting next Tuesday.
Hopefully no more bruising in the future!
Today I just want to say how grateful I am for my family, friends and the man in my life that have been unconditionally supportive. Good people are few and far between, great people are a rarity and shouldn’t be taken for granted. Take the time each day to be thankful for each person that blesses your life, that brings joy, laughter and love into it.
I have come to recognize the fact that despite all my flaws, my “disabilities” as some might call it, my quirks, and my weaknesses, these people are always here for me with open arms. They accept me exactly the way that I am.
Thank you for loving me for who I am and walking beside me through life’s crazy journey.
To those who read this…hug someone close to you today, call a dear friend, text someone you love and just thank them for being who THEY are and for always being there for you. Remember, a little love goes a long long way! Be blessed my friends and have a wonderful rest of the week!

02/14/2023

Good morning everyone! It’s been a long while since my last post and I hope everyone is doing alright.
I just had a round of IVIG treatments last week and for the first time ever, was left with a deep bruise at my port site. The side effects of this past treatment weren’t fun either. I was unable to eat much solid food for the duration of my treatments and two days after. I’m still not eating much but managed to get down some peanut butter toast with bananas yesterday. But that’s all I’ve pretty much eaten since last Wednesday apart from the snacks I brought to the hospital during my treatments. I always manage to at least eat during them because otherwise the taste of the steroids (pre treatment) can be a little overwhelming lol. Yes it’s odd to taste what goes into the bloodstream but it’s true…and it can be very unpleasant.
Anyhow hopefully today I’ll manage more than one meal…baby steps to getting back on track!
I’ve been speaking with a dietitian who has been helping out with my nutritional needs/goals and hopefully I get back on track with my eating plan.
I hope my bruise heals quickly, at least on time for my next round of treatments, but at least it doesn’t hurt at all. So much scar tissue is built up underneath that I can’t feel anything there anymore (bonus since the IV needle is huge lol).
Take care everyone and message me if you have any questions or just want someone to chat with. God bless!

11/08/2022

It’s winter time again! Weather is cold, roads are icy, and we all want to hibernate until spring! Fortunately for me the hospital is much closer now so treatment is easier to get to on a regular basis. For all those dealing with nerve pain, remember to dress warm and keep your fingers and toes especially warm! Good circulation is very important! Stay safe my friends and be blessed this winter!

04/16/2022

Hey everyone, it’s been a long time since I’ve posted so I thought I’d give an update and see how everyone else was doing.

First of all, happy Easter weekend to everyone! I hope it’s a blessed weekend with family and friends ❤️. I’m just chilling at home with my parents and my sister while I recover from yet another chest cold. This has been an ongoing issue for many weeks now. I felt a bit of a reprieve for almost a week last week…until Wednesday afternoon when I developed a fever. This is the first fever I’ve actually had since I started my treatments over 3.5 years ago.

Now to back things up…I went on holidays last month with my youngest daughter and was due for my treatments the week after my holidays. Unfortunately upon returning from my holidays I caught a cold and was unable to receive my regular IVIG treatments. Instead of rebooking we just kept my regular schedule so I have treatments this coming Monday.

Anyone who receives IVIG knows that it helps boost the immune system. Not getting it last month unfortunately meant that my immune system was weaker than normal (and that’s not great for someone already immunocompromised). I’ve struggled since then with a chronic cough/cold which at times makes me feel very worn down.

Fortunately, I spoke with the hospital staff and they will allow me in for treatment as they understand the importance of not missing out on another one. They may have to place me in isolation when I go in, but that doesn’t bother me at all.

This has made me very aware of the importance of regular treatments, not only for daily health but also for the treatment of my disease…as I’ve noticed a huge difference in my body with only one missed treatment. The numbness and tingling has increased in both hands, I feel it in my feet, and I’m extremely fatigued.

So for anyone out there going through this, I know it’s a tough time with all the colds and stuff going around but do your best to stay on schedule with your treatments, take your vitamins and drink lots of tea with honey!

Take care and enjoy the holidays!
Be blessed!

02/16/2021

I haven’t posted on here in quite a while and an update is long past due. Covid has definitely made some things far more challenging. Hospital visits are very different and I haven’t been able to have visitors sit with me for almost a year now. I know many of us miss that company while getting our treatments. The nurses have been busy but I’m so grateful for each one who continues to work hard and truly love the work they do despite these crazy times. I have had to miss a few treatments due to illness and the new Covid rules but fortunately so far, our family has remained Covid free. I admit that I’ve been going through some difficult times with med changes (for epilepsy) and that has caused a variety of issues. However I have an MRI in March and then another one to be booked after. This will determine if the disease is affecting my neck and spine. My hands and arms have been quite weak lately but my family has been a huge help with day to day life. I need to say a special thanks to my family (especially my kids who help me every day), my aunt Sherrie for all her prayers, my parents and sisters, Ashley for being my chauffeur, my business mentor Diane and Vince who puts up with me daily. Love you all!

07/07/2020

It’s been a very long time since I’ve posted so I think an update is long overdue.
First of all, I truly hope and pray that everyone is safe and healthy. These last several months haven’t been easy on anyone around the world but we’ve pulled together and I really see progress being made. Despite the adversities that Covid has caused, I’ve seen what I feel is a better side of people for the most part. Families working together to make sure others have had what they need to make it through each week, people connecting in more ways then they ever did before, and a general sense of togetherness!
I, for one, have been so grateful for my family throughout this time. We’ve obviously been doing everything together and although there have been ups and downs, I’ve loved the moments spent together with each one of them! I feel like I took it for granted in the past and now I have a clear view of what I was missing out on. Our lives get so busy with mundane things that we miss some of the most important moments without even realizing it. I don’t want to spend the rest of my life regretting the times I’ve missed. These moments are precious and they go by very quickly. Don’t take family for granted.
I also realized how important it is to take care of myself so I can be around for my family. I want to be around to see my kids graduate from high school. I want to see them get their college degrees. I want to cry at their weddings (as mothers always do). I want to hold my grand babies. I want to experience retirement. But I’ll never do that if I don’t take care of myself now. It’s ok to think of ourselves once in a while and make sure we do what we need to for US!
I encourage everyone to go for a daily walk, drink plenty of water, eat healthy and take time for yourself. Yoga or something like that is a wonderful thing for that bit of quiet time to reflect on your day and make sure you give your mind a break from the stresses of the day.
And remember, it’s ok to still feel tired, sore and generally not well when dealing with an auto immune disease. But I encourage you to push yourself on a daily basis to do these few small things and you’ll notice a difference. For the past several years I’ve been letting pain, exhaustion and nausea stop me from getting out and doing anything for myself...well I’m not letting it control me anymore. Take your life back!
That’s my update/message of encouragement for now.
Take care and God bless!

04/09/2020

As I’m sitting here on day 3 of my treatment listening to the song Finish Line by Skillet, it occurred to me that I’m currently part of a live action superhero movie! Although I only play a very minor role as a helpless victim technically, I get the privilege of meeting my superheroes and interacting with them on a personal basis. It’s a challenging role that they play...not for the faint of heart! And there’s more inside this building that I can’t see but they’re playing their parts in different rooms, with different people like myself. Some superheroes have roles that are more challenging than others but they’re all equally as important! But the story doesn’t end here...there’s unlimited action going on outside too as trucks are passing outside getting me and many others in this “big picture” our food and other essentials needed to survive. And then who can forget the neighbourhood’s favourite grocery clerk that smiles at their customers every day regardless of the chaos going on outside! We also have our heroes in blue and the heroes who transport the sick and injured to the hospital. And there are so many more...too many to mention. I’m part of the greatest superhero movie of all time...it’s now...and it’s REAL! Don’t forget the people who’ve had to leave their homes this morning to make sure that you and your family can make it through today, tomorrow and the days to come! Say a prayer for them today. ❤️

02/29/2020

A friend posted this and I just loved it! We are living in some very uncertain times, not knowing what the future holds. But some things we can be certain of - God’s never ending love for you and I! This week has been absolutely crazy 😜 with some very unexpected challenges and yet I take comfort knowing that my Heavenly Father knows exactly what I’ve been going through, has seen each tear, has heard every thought, calmed every fear. I don’t know what tomorrow holds but I know I don’t need to worry about it because God has our future planned, and it’s a perfect plan! And it doesn’t matter what this world tries to throw at us, because Christ has overcome the world! These are the thoughts I want to leave for you all this week. I hope and pray you all have a wonderful weekend and a great start to this next month!

Madsam Neuropathy Support Group

09/06/2024

06/04/2023

05/17/2023

03/13/2023

03/02/2023

02/14/2023

11/08/2022

04/16/2022

02/16/2021

07/07/2020

04/09/2020

02/29/2020

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