It's so hard. And I need you.

I get annoyed when people act as if I'm going to get better. That's the thing about chronic illness, it's chronic, it's kind of sort of forever.

Yes there is prayer and hope for remission in my future, but it is not guaranteed and outside the miracle by God, very unlikely. Even if one thing goes into remission, it doesn't mean they all will. Many of them can't go into remission, they are just conditions I have. Life long.

I don't just have Myasthenia Gravis. I don't just have Lyme Disease. One diagnosis does not replace another. I have (in order of when I got diagnosed including serious and not as serious):

bad allergies/sensitivities to foods, fumes, environment etc.
Scoliosis/another back problem
GERD
Gastritis
Chronic Epstein Barr Virus

Tendonitis

Myasthenia Gravis

blood clot disorder

POTS/Dysautonomia

Candida

Adrenal Fatigue

Mast Cell problem

immune deficiency

Lyme Disease

Bartonella

There is a chance that in treating my Lyme Disease, many others will improve. Improve, not go away. Improve could mean I could just do a little more. It doesn't mean I won't still struggle every day, still be in pain, still be extremely fatigued, still be weak, etc. Again there is no guarantee and getting lyme under control is something most people attempt to do for many many years without success.

I will always have to be careful not to be around anyone sick because there is nothing I can do about my immune deficiency. That means my body doesn't fight off illness like normal. I get sick much easier and "little things" like a cold can easily turn into big things like pneumonia, which has happened in the past. Pneumonia can flare my MG and land me in the hospital on a vent. I will always have to try to avoid dust, cats, ragweed, smoke, and so many common foods such as gluten, yeast, sugar, dairy, anything processed as much as possible because they make me worse. Again the breathing thing. I will always have to walk every 2 hours and take things to thin my blood due to my blood clot disorder (high risk of blood clots including pulmonary embolism which I've had previously). I will probably always need to drink liters upon liters of water a day, always have healthy food available to me for blood pressure and blood sugar drops, and take lots of supplements in addition to prescription medications. 

This is the life I've been given. Do I like it? In regards to this health part- no, I don't. I really really don't. I pray to God every day to remove these things and make me better. But the reality of it is this is what I am dealing with in the now. And I need to live how I can and do what I can when I can. It's not what you are used to or want but it is what it is. 

By always acting as if I'm going to "get better" it makes me feel like my life is on hold. It makes me feel like I'm useless for this time being. It makes me feel like I'm not valued for who I am in the present. It makes me sad that this is what I have to live with and I can't be healthy, able bodied, working and enjoying life more fully. It makes it harder. 

I do my best to be positive, but sometimes there are days I just break. I cry. I feel useless. I feel unloved. I feel so alone. I am in pain, weak, miserable. And those are the days I need you the most. Today is one of those days. 

All you need to do is be there, listen, care, offer to help however you can- cooking healthy meals, driving me where I need to go, texting to say hi or you are thinking about me, sending a card just to make me smile. It all helps, tremendously. 

Thank you for your support and encouragement. One day I hope to pay it back, but until then I'll try to pay it forward when and how I can. God bless.