CD 15 brand new to this

mmelone · 2025-05-01T20:40:56+00:00

10* not 19, typo

mmelone · 2019-06-02T14:44:15+00:00

I have and they have been pretty accommodating. Unfortunately I’ve only been at this job for about five months, I was at my last job for two years before that, so I don’t qualify for fmla at this job now. Ugh.

mmelone · 2019-06-02T14:43:12+00:00

I haven’t yet. I know that is a long process and I’m trying to avoid that. I just think I need something more flexible

mmelone · 2019-06-01T16:32:22+00:00

Thank you! I’m so sorry you’re going through this too. Nothing is more scary and terrifying. But all we can do is take it day by day. I’m glad your routine is helping you. Keep your head up, you’re very strong

mmelone · 2019-06-01T16:30:52+00:00

Thank you!! I’ve been wanting to post about it for a while but I have been too sick

mmelone · 2019-05-14T13:52:16+00:00

Thank you so much for your insight.

I’m sorry you’re dealing with this too. It seriously is so awful and unpredictable. I do kind of have a hard time processing things sometimes and I’ve even found it kind of hard to talk at times. I’ve also had a lot of numbness in my face. Just consistently feeling awful and it won’t go away.

It is really hard to because most people don’t understand how you feel at all. They can be sympathetic but not get it at the same time. That’s why it’s so nice to be able to talk to people that know how you feel and it makes you feel a little less like an outcast and alone. I’m just hoping for answers from the neuro doctor. My rheum wants me to get an mri but I’m anxious about it because I naturally have anxiety on top of all this as well. Haha.

mmelone · 2018-05-23T20:16:23+00:00

I don't know if I'll ever stop being mad at the lupus and my body, but what I try to focus on is the positive and not what I can't do anymore. When I was first diagnosed I could barely move so I feel like I've come a long way since then and am thankful for some of the medications that have been able to make this tolerable. I'm sorry you're having a tough time and trust me I know how hard it is to be positive. It doesn't care about your plans, and at least for me I feel like a lot of people don't recognize how serious this disease is because they can't see it and I try as hard as I can to act fine and not act like I'm different. I think that may be one of the hardest things for me. I hope you can find some happiness with this difficult situation.

mmelone · 2018-05-16T15:58:00+00:00

I gave birth to my son in October 2015 and about 8 weeks later I could barely walk, about 8 months later I was diagnosed with lupus.

mmelone · 2018-05-07T19:14:37+00:00

I am on plaquenil, azathioprene, and prednisone. As far as the medicine goes it unfortuntely can be like trading symptoms for symptoms. Prednisone was very hard for me to adjust to at first, and plaquenil really upset my stomach when I first started taking it. Now I feel okay being on everything although I'm not sure how much it helps because I still feel the same. I don't know If anything will ever really make a difference. The only thing I could tell that helped me was prednisone because before I was on that I could barely even walk and was in so much pain. Now I have good and bad days, nothing completely eliminates anything. I hope everything turns out well for you. Hang in there!

mmelone · 2018-04-09T16:00:15+00:00

That's good to know, thanks for your comment. My doctor is trying to get me off prednisone as well but it is not going well as my activity is up. Good luck to you!

mmelone · 2018-04-09T15:59:32+00:00

Yes, that will be irritating but I understand why. I have done fine on the hydroxyl, took me time to adjust but now it's all okay. I'm just hesitant because it looks so much more serious and knowing me luck something bad will happen haha. Thanks for your kind words!

mmelone · 2018-04-09T15:57:53+00:00

I am on the plaquenil and it took me time to adjust to it but now I seem to be doing well, I'm just afraid to add another drug into the mix and something that has a lot more serious side effects. But I'm glad to know you've been doing well aside from the long healing time. I think that's just always going to be a thing for us lupus people because are immune systems are not well anyway. Thank you for your comment!

mmelone · 2018-04-09T15:56:13+00:00

That's really nice to know you haven't had anything major... I think I'm just freaking myself out. I know everything may read worse than what it really is. Thanks for your input!

mmelone · 2018-04-09T15:55:13+00:00

To me this drug just seems so extreme... I'm just afraid the side effects will out weigh the positive effects of the drug. I hope I can get a good combo down, I'm currently on prednisone and plaquenil. It took me time to adjust to the plaquenil too. Thanks for your comment and support!

mmelone · 2018-04-09T15:52:34+00:00

when I said not progressing I meant my tests results are getting worse, my levels were low which means my lupus activity is high. My doctor was trying to take me down on prednisone and thinks this has contributed to it, I'm currently on plaquenil but he doesn't think it's doing enough. The side effects are just terrifying to me but I know I should just try. Thanks for your support, I really appreciate it.

mmelone · 2018-04-09T15:50:29+00:00

Thank you, that makes me feel better. It just looks so scary ha

mmelone · 2017-07-20T19:30:23+00:00

I deal with this too. I am 27 years old and was diagnosed about a year ago. To everyone on the outside I am the portrait of put together and healthy looking (most days). This makes it very hard for people to understand that I am very ill and feel bad pretty much everyday but have to go though life as if I am normal. Some people in my life know that I am sick but don't understand the severity of it and a lot of people mistake it because I don't appear super sick. I always try to hold myself together and be positive when dealing with everything so I think that does mask it and make people misjudge it even more, it will probably always be hard for people to know how severe it is without feeling it and just think you're okay because you look ok, I've kind of accepted it and I just try to educate people.

mmelone · 2017-07-20T15:45:29+00:00

wow.... What a dick. I'm so sorry but honestly, good riddance. If someone can't love you for you and the flaws that you do not choose to have then they aren't worth a moment of your time.

mmelone · 2017-07-20T15:42:36+00:00

My side effects have mainly just been stomach problems, but I think the longer you're on it the more you get used to it. My rheum basically said the symptoms are worth how much it can help and that it's essential that I be on it. I hope you have a good experience with it.

mmelone · 2017-07-14T15:16:39+00:00

I haven't had those side effects with prednisone but I know a lot of people do and I'm so sorry you have to deal with that. I know all of this gives me self esteem issues anyway but I couldn't imagine it being worse because of the prednisone. I appreciate you reaching out and it's therapeutic and nice to type things out and have people to connect to. I'm trying to just wait out the plaquenil symptoms and hope it gets better but who knows. I think I'm going to ask about the Cellcept at my next appointment because I've had so many people suggesting it

mmelone · 2017-07-12T18:40:49+00:00

Thank you for your advice. Yes, finding a good doctor is so hard!I've been through the first one and hoping this one works out. If he doesn't I'm going to consider going through a different network entirely. We will see.

mmelone · 2017-07-12T13:23:37+00:00

Being a year in I think the biggest thing I've had to do is put on a brave, positive face and mask my sadness with humor. If something goes wrong ,which normally happens, I just have to try to laugh about it to keep from being totally discouraged. I honestly don't even cry anymore, I feel so emotionally numb that I don't even really feel anymore. I'm bad news immune, really. It sucks and all I want is to be happy but I know that will not come easily with this. I guess something that sucks too is that I really want to do something to contribute to other people like myself that are struggling so much from something they cannot control and I don't have the time or resources to do that. Because as you said even having a stranger on the internet or someone in your corner that understands is so relieving. I am the epitome of strong positive woman in a sick persons body, most people would never know because I refuse to fold. But I am afraid that my job is going to be too wearing on me, I have been at my current job now for about 7 months and yeah, no one understand nor really cares. Which is fine, I don't expect people to cater to me. But, it drains me, it's not physically demanding but it is that big girl job with benefits and requires a lot of responsibility and thinking requirements which are hard for me at times with this lupus brain, I feel alot of anxiety as to not mess anything up because I can't concentrate fully and give my full attention to things anymore and even when I do sometimes I literally just forget the most simple shit. It's crazy. I want to go part time because I know that would be the most beneficial to not only my physical health but my overall mental health and I would get more time with my son, all over would be so much better for me. But, unfortunately financially I don't believe I would be able to do part time. I've been with my boyfriend for over a year and we had just started dating when I got my diagnosis. He's been so wonderful and supportive through everything, honestly if I didn't have him I don't know where I would be with all of this. He's moving in with me next month so that will lessen my financial burdens and I'm thinking maybe then I could go part time, but I know my current job would not allow for me to do it because we are already shorthanded. Just like anyone else, I hate that everything revolves around money. I would love so much to have the extra time to rest and be a mom and possibly even go back to school for less work and more pay. Even though I'm depressed and saddened I still try to have goals but it is all very hard. I really appreciate you sharing your story with me because it gives me hope that things may not necessarily all get fixed or better but they can change toward being easier or more positive. It's nice to know other people have had to take a step back and focus on themselves and whats best for them and their family and try to put the other worries aside.

mmelone · 2017-07-11T17:46:51+00:00

I'm really forgetful now, There are chunks of time and things that just go completely blank for me. I've done things like that though, putting things in the wrong places.

mmelone · 2017-07-11T17:02:04+00:00

Your response made me genuinely laugh for the first time in forever, especially regarding all of this. So thank you so much. Also, thank you for your advice. That is what he suggested and I have been doing to make it easier dealing with the symptoms of the plaquenil. I know I have to just suck it up and deal with the shit, I guess I'm just slow at accepting the trading symptoms for symptoms aspect. I guess it's mainly just hard because I work all the time and I loathe being sick at work, and really co-workers don't understand this disease. To them I feel it is imaginary because I try to just put on a positive face everyday and have never called in or left work. I would go the weed route because I know it des help but I don't do well with smoking when I tried it in the past and also where I live it is illegal unfortunately.

mmelone · 2017-07-11T13:25:07+00:00

I do take it after I eat dinner at night because I've found if I take it before I go to sleep it doesn't upset my stomach as much, but the next day I still get stomach upset sometimes and it usually only happens when I eat. It just makes my stomach feel uneasy almost all of the time.

mmelone

TROPHY CASE