02/24/2025
I have been in hiding unable at first to cope with the constant pain and the sudden loss of the use of my body, from my sight to my heart nothing was working as it once did. I was going through so many emotions and during this time my youngest brother was fighting a battle which he lost on July 24, 2024. I was not able to think, to sleep, to accept his diagnosis. My time was spent just praying for God to take me and not him… I was finding my own battle hard to accept. For me, I have endured 2 years of more pain than most people should have to experience in a single day. At any rate here I am sitting in a wheelchair unable to dress myself, unable to get into my bed without assistance, the pain of getting into the shower or onto the toilet brings me to tears.
Though the doctors do not agree on what is causing me to suffer like this I know how blessed I am. If this is in fact my multiple sclerosis well then, I am so blessed because this could have happened years ago. I have had time with my sons, my family which includes special times with my fantastic nieces, my family, dancing with Jimmy and hiking with Joel. Then my Ron helped me to help my cadets. We did my best to have those wonderful & beautiful cadets experience as much as possible and it seemed like we took them from on end of this state to the other. So you see I have had an exceptionally full and beautiful life, my memories are many and My memories cause me to smile❤️🙏🏻❤️
Hot tip……if you get into a committed relationship with someone that has chronic health issues or after you get into the relationship please please please understand that that person may not be able to do anything for themselves for weeks to months at a time and a large burden is going to fall on you. Take the time to make sure you're able to handle it before you commit.
I didnt ask for my body to fail.
My favorite quote from my doctor was, “it can’t really be that bad if you are still working and doing everything you do. “ I told him I didn’t know I had a choice. 🤷🏻♀️
Years in pain, tired and the many changes in me for no reason or apparent reason ... Hiding everything from someone else, pretending to be doing better than you are; until it no longer works. No matter how strong you want to be.
Then the moment comes when they tell you what you have ... You have mixed feelings: you finally know what you have, but how do you deal with it?
Lack of encouragement, wanting to lie down, taking medication frequently; having a whole pharmacy on top of the nightstand.
Then, the daily responses, "Why did you get so fat?" “I have this great diet, if you just go out and exercised.
That once beautiful hair of yours now awful and it falls out.
What happened to you??....
This is all true and that's why I'm sharing it!
Silent and invisible diseases do exist ...
When you have an invisible disease it is difficult to argue from your perspective with ignorant people.
Life takes a lot of turns !!!
Tired of being told:
* Did you go to the doctor?
* Have you tried this?
* Have you tried that?
* I don’t know what else we can do for you...
Yes! I tried and still try everything !!!
Doctors say this disease is forever. That I will not heal. However, I am not giving up, but I want to make others realize:
* A nap will not cure me but it will help me ...
* I am not lazy, I take medication and it sometimes makes me sleepy.
* I am not angry but sometimes cranky with pain.
* I struggle daily with pain, mobility problems, fatigue, the criticism of my environment.
Most frustratingly, people look at me and say, "It can't be that bad; you look good "
Despite the fact that my body is experiencing excruciating pain everywhere, of course I look good, I always try to look good, it is an "invisible" disease.
This disease affects me physically, mentally and emotionally. Because rare autoimmune diseases cannot be seen, but we feel them.
And they are there ... Silent attack but extra painful.
I AM LOOKING AT THOSE WHO TAKE TIME TO READ THIS POST TO THE END.
The following request is sent to the post:
Please, for me and in honor of someone who fights against:
-ALS
-Ankylosing Spondylitis
-Lupus
-MS
-POTS
-Dysautonomia
-Crohn’s Disease
- Ménière’s Disease
-Addisons Disease
-Hashimotos Disease
-Graves Disease
-FND
-Depression
-Anxiety
-Mental Illness
-Autoimmune disease
-Adrenal Insufficiency
-Sjogrens syndrome
-Polycystic o***y syndrome.
-Kidney Disease
-Rheumatoid arthritis.
-Psoriatic Arthritis.
-Chronic pain
-Endometriosis.
-migraines
-Multiple sclerosis.
-Myasthenia gravis.
-Pulmonary hypertension.
-Epstein Barr syndrome.
-Chronic fatigue syndrome.
-Diabetes.
-Exogenous Pancreatic Insufficiency.
-Fibromyalgia.
-Raynaud and Scleroderma.
-Neuralgia of the trigeminal
-Epilepsy
-Cancer
-Hypothyroidism
-Arachnoiditis
-Chiari Malformation*
-NEAD
-Vasculitis
-Alpha 1 antitrypsin deficiency
-Multiple System Atrophy
or some other disease you don't see.
I’m adding Idiopathic intracranial hypertension
I would like 5 of my friends to post (not share) this message to show that you are always there when that someone needs to talk.
In support of a friend, a family member who is fighting any of these diseases. Just say “done”💜
