Me, Myself, Churg & Strauss

07/09/2023

03/02/2021

In a couple of my other Churg-Strauss groups there has been a lot of angst passed back and forth regarding the COVID-19 vaccine. So, I've decided to address this here on my page. Anyone may comment but political nonsense will not be tolerated. Any nasty remarks or name calling will result in a warning then a temporary ban then a permanent ban. This page is for people either with or know someone with CSS and it is a place intended to be educational and supportive of one another... not to fight over political standing. I, however, respect everyone's point of view and I will not suppress one view in favor for the other but rather ask everyone to keep in mind what my page is about. It is a very thin line that we walk but if you can always remember that we are in this fight together then the thin line can become solid ground with mutual respect and kindness towards one another despite our differences of opinion.

22/03/2020

https://www.cnn.com/2020/03/19/health/immunosuppressed-coronavirus-wellness-trnd/index.html

Be safe my fellow immunosuppressed peeps! Please don't panic... that only makes our illnesses worse... just use your common sense and practical realistic judgement like you have had to do thousands of times before. This kind of things is nothing new to us because the common cold or flu can have the same outcome as COVID-19. I'm praying for you all and keeping you in my thoughts. ♡

While there's concern for the elderly catching coronavirus, there's another high-risk group that has nothing to do with age.

15/03/2020

Recently, I have had an influx of messages in my inbox or on messenger regarding the current SAR Coronavirus Pandemic. While I can most certainly understand why some of you would be overly concerned, I ask that you look at the numbers and be smart enough to understand the mathematics... there is absolutely no reason to panic at this time, rather be aware of the facts and practice the art of careful judgement regarding your personal circumstances and what's going on around you. Currently, my standard answer has been this:

Although, I probably have more reasons to be nervous or worried than most, I find I'm more affected by the 'mob mentality' than anything else. I fear for my brother-in-law who is going to be separated from his family to serve this country, I worry about my mother who has a compromised immune system, I'm sad for my daughter who can't go on her senior trip due to closures and cancellations, I'm devastated for my sister and her kids who will have to go on despite missing a main ingredient of their family who will be temporarily away... there is no reasonable place for panic in times like these. In Arizona, we have 12 confirmed cases of the SARS Coronavirus out of the 7,380,000 total people who reside here. Grocery shelves have been emptied, functions of all types have been cancelled and you see that most of the population are about themselves with no limit to their greed and selfishness... for a mere 3.4% mortality rate. The Black Death had a 80% mortality rate which means only 20% of those who got it survived. Instead of taking calm precautions such as not being 'up in someone else's grill' whilst having a conversation, washing your hands regularly, avoiding hand to mouth without using sanitizer just prior and staying home if you're feeling ill... people are reacting as if we are in the middle of filming an episode of 'The Walking Dead'. A pandemic has no place for panic so stay calm and collected because I have found when God brings us to it he will also, undoubtedly, guide us through it.

May God bless and keep you all.

15/03/2020

So... as many of you can clearly see, there are times when I have to take a sabbatical from acknowledging this disease process. When you give something power to control your moods, your energies, your overall aura... then you are at its mercy instead of it being the other way around. This March marks 15 years of sharing my body with Churg-Strauss and what I've come to understand is that this illness will always be a part of me but I don't always have to be a part of it. The best advice I can give to people is to take time and check out every now and then... let yourself recharge and find your center point. I am an empath by nature but when you have a chronic illness you can easily find yourself zeroing out quickly. In order to be there for others, make sure you're there for yourself first and foremost because, regardless of how you feel about this illness, it is a constant battle and if you're not being good to yourself it WILL be a battle to the death. Instead, I invite you to treat it almost like a sibling... you're gonna fight, you're gonna argue and you most definitely aren't always going to agree or get along but at the end of the day you must learn to work together and find fluidity. It's hard to tell people that I love this illness but hating it never got me anywhere. You don't have to love your illness but you MUST love yourself that has this illness.

What do you all do to check out? What do you all do to prove your love to yourself?

11/12/2018

Education is key when it comes to any disease process. I have spoken to countless people that are desperate for information in order to gain understanding and knowledge to better prepare for the future that is in store for them. I have spoken with mutual Churg-Strauss patients, their families & loved ones and many medical professionals. I have read the articles and I've done some research but the one thing that I'm quite certain of is that no two patients with this illness have had the same exact path... this being said, understand that something that helps one CSS patient may not be as helpful to another CSS patient. A medication that may help one gain remission could easily be the same medication that takes another person's life. There are a few things, however, that may very well be in every CSS patient's best interest to know. There are simple every day things that are being easily overlooked that could have dire consequences. There is no better platform than a public forum such as this to provide documented information in order to better educate us all. I've decided to list some of these every day items in a new series of posts that some CSS patients may be unaware of. I also invite anyone to add there own knowledge of such things. I will remind everyone, however, to do their best to provide facts that can be backed up by documented information or personal experience instead of mere opinions that cannot be substantiated because I have a duty to my followers to provide facts. So, keep on the lookout for any posts titled "It's the little things" and together we can move forward to a better healthier tomorrow. ♡

25/08/2018

I just wanted to take a quick moment to thank all of you that have reached out and shared your stories with me. I will also apologize for not getting back to everyone right away... I have a tendency to be extremely thorough because that's what I wish I had when I was first diagnosed. I've learned that this illness is truly unique to each person that has it. I have yet to hear any identical stories so at times it's hard to understand where this journey is taking us.

There will be roadblocks.
There will be setbacks.
There will be despair and grief.
You will feel helpless and hopeless.
You will look for answers that can't be found...

But...

Within your struggle you WILL find your strength. I will NEVER go as far to say that I'm blessed to have this but I will say, however, that I'm thankful for my journey through it. There is light at the end of the tunnel even when you are immersed in darkness... don't look down and don't look back... Just keep moving forward.

My setback

I was approved for Fasenra through my insurance and was awaiting shipment to my doctor from my pharmacy. I couldn't wait!!!! This was gonna be it... this was gonna give me more quality of life... I called my doc... still not there... called again... still not there... this last time I called I was informed that my doctor was leaving the practice so now I have to start all over. I have to get established with a new doctor to go through the last thirteen years of suffering. They will look into what THEY think I should do instead of looking at what I've already tried. New testing, new waiting for authorization, new despair, new thoughts of giving up... but I've come this far. I will not look down... I will not look back... I will keep moving forward.

28/06/2018

So, I've been told for years that my immune system will need constant replacement due to my Hypogammaglobulinemia which means IVIG or SubQ IG will be a never ending treatment...

HOWEVER...

I just found out today that my immune system has been maintaining a normal level on its own. There is always a chance of relapse but what matters at this moment right now is that Hypogammaglobulinemia can in fact go into remission.

Every day those of us that suffer from auto-immune illnesses are informed of the impossibilities... I challenge my fellow auto-immune sufferers to raise the bar, to prove the medical community wrong, to educate yourself to the highest degree and show that impossible is not all that impossible after all.

♡♡♡

06/09/2017

Back in the saddle again...

19/07/2017

☆☆☆ ivig ☆☆☆

15/07/2017

Let's talk about treatments...

CellCept / Mycophenolic acid ~ Immunosuppressant agent taken orally once daily

Cytoxan / Cyclophosphamide ~ Chemotherapy AND Immunosuppressant agent administered via Intravenously once monthly for a duration of six months

Gleevec / Imatinib ~ Chemotherapy agent taken orally once daily

Hydroxyurea / Hydroxycarbamide ~ Chemotherapy agent taken orally once daily

Imuran / Azathioprine ~ Immunosuppressant agent taken orally once daily

Interferon alfa-2b / Intron ~ Biological Antiviral agent administered via Subcutaneous injection three times a week

Methotrexate ~ Chemotherapy AND Immunosuppressant agent administered via Subcutaneous injection once a week

Mepolizumab / Nucala ~ Biological Antibody agent administered via Intramuscular injection once monthly

The above is a list of medications that I have been prescribed to date. The Interferon Alfa 2b has been, by far, the most difficult treatment to complete. I did, however, gain a remission upon using it. The remission was short lived due to stress and trauma of a pretty severe motor vehicle accident. I'll be discussing the effects of stress, trauma, anxiety and other outside factors that could cause relapse in later posts.

07/06/2017

Nothing like a lil IVIG to get some energy...