I am so overwhelmed and don't see any hope for the future. I am on SSDI and cant work, have no family to count on and people just don't get it, or don't believe me, or don't care. I so need peoples support right now.
Hi there, I understand exactly how you feel! I have been treated for Sjogren's but nothing showed up 2 yrs ago when I was sent my ENT to rheum Dr. I have not found one single person who has Sjogren's & no one knows anything about it. Even the nurses I have ran into think Sjogren's is only dry eye/dry mouth. I had punctual plugs inserted in my eyes & I use restasis drops 2x day,along with comfort drops every hr or so. The ENT dr keeps me supplied with evoxac. I did not go back to the rheum dr because he just wanted me to come for bloodwork every 3 months. I use childrens toothpaste & also a fluoride paste for my teeth. I am always chewing sugar free gum or sucking on a sugar free mint. I use lip moisturizers. Children's mouth rinse. My body aches off n on. When I first got sick I lost over 20#'s. Thank goodness I gained it all back this past yr. I also have interstitial cystitis. I take 2 tramadol's daily. That helps me with my chronic pain. I take Elavil for that also. My glands under my ears stay swollen. The right side much worse than the left. My ears will itch horribly & drain fluid. I use a drop of wax removal when that happens & it sure helps.I have to sleep with air purifier on my nightstand each night. If I don't have it I feel choked up & can't breathe! When I wake during the night I go put more eyedrops in my eyes & do the lip moisturizer. I also use vaginal moisturizers. Oh my goodness- how can one be so dry!!! I only have to wash my hair 2x's week now. I make sure that when I bathe or wash my face I need to slather on moisturizers. My nails & cuticles are very dry, along with my feet. Slather on moisturizers with that too. When my eyes are hurting me I have a sock filled with rice & I rest it on my eyes for relief. I keep it in the freezer. You can also warm it in the microwave too.I take mega red vitamins & vit.E along with Primrose oil daily.I also take an Azo yeast each morning.I believe that I have covered all the things that I have to do daily
I am sorry that you are feeling so sick! My family acts as though I am just fine. It is so aggravating to me! It is like no one understands or cares. Thank goodness I do have a very caring husband. Because I look ok everyone thinks I am ok. My husband has muscular dystrophy but he is the only one that gives me support....
I do have faith in God. I know that He can give me the strength that I need for each day.
I hope that I have been able to give you a tip or two that may make you feel alittle more comfortable.
I have to use Miralax daily also. Do my best to stay out of the sun & the wind. Both can work against me. I am constantly battling with tonsil stones. Do you have probs with them?
The sun really kills me, I spend a lot of time in semi dark, or I get migraine pain. The wind is an issue also, but the sun prevents me from being out much anyway. I love to be outside so it is emotionally difficult to be forced to be inside. II feel almost jailed by this condition. My mind and will want to be active, but I'm already so exhausted in body and if I go outside for a couple hours I am toast for the rest of the day.
I didn't know about the first longer post til right now, something that brainfog does to me. I just miss stuff, and cant recall stuff or I get so confused and a lot of times I cant reply when being spoken too, either words wont come or I say something totally different than what I was thinking. Although it's been happening for at least a couple years I am so put off kilter by these weird responses that I don't even try to correct myself. I end up feeling like people think I'm either crazy or a liar.
I have the same problem with other people, they just don't get it, and they try to offer me work or options for things to keep me busy. It's like they don't even hear about the symptoms I'm having and just think I have too much time on my hands. I feel very alone, and misunderstood.
Sorry that you're feeling like this, but you can vent on here, at least everyone understands. And hopefully you can get some advice for tips to help you. Reading through past discussions if you've got questions too can help- I've found out lots from this community. Good luck and God Bless.
What happens when you are in the sun?
It blinds me and gives me a migraine, and oddly enough it hurts my skin too, feels like I'm frying.
ingeniousfool said:
It blinds me and gives me a migraine, and oddly enough it hurts my skin too, feels like I'm frying.
Seems like we go thru a lot of things that "normal" ppl don't have to worry about. When I used to shower I would feel So cold no matter how hot the water was. I found out that if I run the bathroom heater while showering I have an enjoyable shower! For several yrs. I couldn't understand why taking a shower made me feel so miserable. Easy fix for me! ; )
I deal with the "brain fog" stuff too. All the while my GYN was chalking up everything to menopause...
Stand firm! You Will make it thru this!!! ; )
Jackie829 said:
ingeniousfool said:It blinds me and gives me a migraine, and oddly enough it hurts my skin too, feels like I'm frying.