To take pain medication when in pain or not to???

https://themighty.com/2017/04/pain-medication-fibromyalgia-fear-embarrassment/

In reading this article I hear my children Karl McNeill Jr. and Ka’miko McNeill screaming at me to stop waiting to take my pain medication. I also have heard the labels that are given to those who seek to relieve their pain in the E.R. and before I became a patient I contributed to the ignorance. The truth is, I as a chronic pain sufferer have difficulty taking my pain medication because I do not want to be a statistic. I need my pain meds because I suffer from not just one chronic illness, but three that are very debilitating. I would not function each day if not for the opiods prescribed for me. So to my children, I say thank you for being such wonderful caretakers. But also for just loving me.

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Where is our Sarcoidosis recognition?

Here it is 16 years after my diagnosis and the knowledge of what Sarcoidosis is or where its origin began is still a mystery.  Why is this? I know for a fact that we Warriors are still fighting for our lives. We are still spreading Sarcoidosis awareness throughout our communities and on social media. We are still wearing our purple and holding our events. We are still obtaining proclamations from our governors of state. So what is the hold up? Why aren’t there more specialists out there to treat the many symptoms and problems caused by the disease and the medicines used to treat it? Why are we still not being treated in the emergency rooms across the country properly? Why isn’t there funding to find a cure? The answer is simple. They don’t care because it is not happening to them.  At least that is my opinion. They are not suffering from the debilitating pain. They are not feeling their lives slip away. They are not dealing with the financial strains that the disease brings on the family. They are not dealing with the lengthy and costly misdiagnosis processes. They are not being looked at like they are crazy.

No energy. Tired of being tired. Pain beyond comprehension. Frustration and loss of self. Financial strain. Loss of friends and family who do not get what Sarcoidosis is or what it does to you.

If anyone else has an answer, please tell me.

Peace and blessings,

Marilyn

MFL

United front against Sarcoidosis. We’re fighting for a cure!

 

Sarcoidosis Caregiver tip 2 {Reference: SarcoidWarriors.com}

C__Data_Users_DefApps_AppData_INTERNETEXPLORER_Temp_Saved Images_needs_a_cure_2_sarcoidosis_t_shirts_gifts_postcard-r9d09a89e126d4962a3b3d6c42d19407b_vgbaq_8byvr_324Caregiver Tip 2
Posted on January 25, 2015 at 5:34 pm
Sarcoidosis can be a very isolating and extremely lonely disease. Even when we are surrounded by people who love us we can feel so alone and it hurts. When your friend or family member has sarcoidosis there are a wide variety of ways that it can affect them. It diffidently affects our physical bodies and can be crippling and very painful which limits our ability do do all the things we have done in the past and still desperately want to do. Mentally it can cause memory loss and a since of confusion which is frustrating and leads to a loss of confidence in ourselves. Then there is the emotional aspect of Sarcoidosis, this can entail a wide array of issues and a lot of the medication we take can increase these 10 fold.

 

This is where my tip of the day comes in. There is no way for you to fully understand and know how it is to feel the way that we do unless you  have this disease. You can however validate what your friend or family member is going through. It is important for you to validate how they feel physically , mentally as well as emotionally. By doing so you show not only your support but also that you truly care what is happening. It is much easier said than done that you will support someone with a chronic illness such as Sarcoidosis. It can take a toll on you as well as it progresses and new changes and health issues arise. It may get tiring to see and hear about the pain and frustration your loved one is going through but that is when it is most important to validate and show understanding. If you are tired of seeing and hearing about it stop and think of how they must feel living with it.

So often what we are going through and feeling goes dismissed and unheard by even busy medical professional that may or may not even know what this disease is capable of. The general public in our own communities know nothing about it and have never even heard of it. This leave a great sense of despair and frustration and leave the burden of validating what we go through on a daily basis on our friends and family. Fair? maybe not but that is the truth about this disease, it does not even know the word fair. I hope that you understand how important you are in your loved one’s life and in helping, supporting and caring for them. Validating what is going on with them and letting them know it is okay to be feeling the way they do plays a big role in that support and in the outcome of our battle.

Reference:

http://sarcoidwarriors.com/blog/?p=100

 

New Sarcoidosis information

MFL

Finally up and running. Our family’s United front against Sarcoidosis. We’re fighting for a cure!

http://www.lifeandbreath.org/living-with-sarcoidosis/treatment

A Little Update, and a Good Article About Auto-Immune Disease

The Professional Patient

This summer has been the summer of medical procedures and surgeries for me. Last Thursday and Friday marked my fifth and sixth minor surgeries of the summer, and since then my body appears to have gone on vacation. No matter what I ask it to do, and no matter how nicely I ask it, my body will not cooperate. I am hoping that in the next few days I will regain some ability to sleep and take care of myself and my wounds. Sometime after that I will be able to start thinking about blogging in earnest again. Expect a mid-month Real Post.

Thank you for all you bring to my life, dear readers. I appreciate that you give me your audience and support. As a thanks, I leave you with a thought-provoking article on auto-immune disease and the tale of one person’s quest to get answers and get better.

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FOUNDATION FOR SARCOIDOSIS RESEARCH

 

Foundation For Sarcoidosis Research

Foundation For Sarcoidosis Research

Sarcoidosis is an inflammatory disease that can affect almost any organ in the body, causing

heightened immunity, resulting in damage to the body’s own tissues. It is devastating and ruins thousands

of lives in every way imaginable. Sarcoidosis not only destroys people physically, but leaves them feeling helpless

and hopeless as well.

The Foundation for Sarcoidosis Research funds research and facilitates partnerships to advance Sarcoidosis

research, but we need a bigger, stronger army to fight this: won’t you help?

One of FSR’s main initiatives is the creation of the state-of-the-art FSR Patient Registry, which will allow us to collect

a large sampling of sarcoidosis patient data that is absolutely essential to researchers. The patient information above

is just a general overview of the disease’s massive devastation; we need scientific data to further develop treatments

and ultimately a cure for this disease.

The FSR Patient Registry is one BIG step towards finding a cure!

Your donation helps fund research to find a cure for sarcoidosis, enabling projects like the FSR Patient Registry.

The quality of life of thousands for patients, and even life itself, depends on you. Give today.

We Need Your Help!

 

Donate_Now
https://fsr-sarc.patientcrossroads.org/

Cold Sweats and Night Shakes

It’s 4 a.m. and I’m up with the freaking chills. Sheet, wool blanket and two comforters later cold shakes becoming controllable. Sarcoidosis SUCKS!!! Can’t wait to see Dr. Kavuru (formerly with the Cleveland Clinic, now practicing at Jefferson Hospital in Philadelphia, Pa) on Monday. Driving to another State to get answers and prayerfully help is finally relieving the stress my family has been dealing with, because of the non help/somewhat from doctors within our State. Now back to the freaking shakes. My hands are even cold whilst I’m typing this. Lord, all I ask is for prayer. I know I’ll get through this because everyone knows, I am and always will be a warrior. I may have Sarcoidosis but it won’t have me!

Just another rant from yours truly ^_~

Marilyn’s Fight for Life Let’s KICK Sarcoidosis