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AutoImmune Disease and Sick UGH

Jan 31, 2016 8:44 PM

I am fighting another cold while they are currently testing me for Lupus. They know I have at least 1 AI Disease but now they're testing to see what all I have. I get sick way too often. I am constantly fighting one thing or another it seems like and my pain gets 10 times worse when I get sick. I am very discouraged and just grasping to hold on during this crazy ride.

I struggle constantly with widespread pain, severe anxiety, and severe insomnia.

Does everyone struggling with these diseases ha e issues with getting sick? How do I get that under control better? Does anyone have any tips? Hey just stop in and say hey ... Whatever.

I am struggling very much with these diagnosis that depression is very prevalent as well right now. I just didn't want to keep living in this much pain and being told that I'll never get better hit me a lot harder than I thought it would.

My husband and 2 of my sisters are incredibly supportive and understanding. However, my children and the rest of my family and friends do not understand and I have been consistently accused of being a drug addict, a hypochondriac, a med seeker, a complete wimp, and all the other ones that come with this territory. I need to make some friends who do understand and help me feel less like I'm totally worthless now.

Jan 31, 2016 9:29 PM

Ryley, I'm sorry you are feeling how you are. I have several of the same pictures. It's not easy. I use biofeedback, guided meditation, deep breathing, gentle stretches, listen to music, sing, dance, laugh, draw, etc. Try some of these suggestions and see which ones work best for you. There is one thing to keep in mind and that is that you're NOT useless. You are going to find your "new normal" journal and keep track of symptoms. Take breaks, on days you can't do much don't and on better days, get on up and out and do things you love. You'll get the hang of it. Sending you gentle {{{Hugs}}} and prayers that you sleep well and you're up for a better day tomorrow. 💕🙏🏻🌻

Jan 31, 2016 9:42 PM

Welcome to our community family RyleyGrey! I'm sorry to hear you're struggling so badly. I'm sorry some people aren't as supportive. We all have those in our lives, and its easier to just ignore them. Or for me it is.

I have 3 AI diseases; sjogrens, fibromyalgia and hypothyroidism. I also have asthma, osteopenia, DDD, OA, TMJD and many other issues. I've had trouble with my immune system since before I developed asthma in 2001, and it started with chronic bronchitis. I catch things readily, one on top of another, and I try to avoid sick people because of it. I've been fighting a head cold with congestion since Christmas, and I I'm currently in a sjogrens/fibrin combo flare. My exhaustion level is bad. I have had chicken pox, mononucleosis, & shingles by 18 and sometimes I wonder if the virus is at play in my health issues today. I keep forgetting to mention it to my rheumatologist.

When I'm sick I increase my vitamin C, usually by drinking OJ. I also take it slower and easier, so I don't overexert and worsen things. I also struggle with anxiety & depression. And I've found that in the past 3-4 years I can no longer deal with "drama" that others create and think is "the worse thing ever." I try to avoid them when they get like that, because they seem to think it's worse than physical chronic pain. We've all heard the comments, so no point in my repeating them. Anyway, just take it one day at a time, one hour at a time. Listen to your body's signals to rest of stop or drink more, etc. I I'm sending you hugs, love, & prayers! We are all in this together. 🙂🙏💕🌼

Feb 01, 2016 9:26 PM

Thank you all for the kind words. I have had a crazy busy day and although it was a high pain day I didn't have a choice on taking care of this stuff. However, I was able to push through and finish out the day. Now I'm beat and I'm going to bed. 6 am comes early and I have to get my kids to school.

Thank you for making me feel so at home here. It really has already helped tremendously!

Feb 01, 2016 10:34 PM

I get sick constantly! Fms and asthma, jury is still out on other possible issues. I have no idea how to prevent this regular bouts of illness. It's lead to me having to leave quite a few jobs.

Feb 02, 2016 4:20 AM

I'm going to have knee replacement surgery this morning. A complete list of my medical issues is too much at this time. I'm in the middle of a sarcoidosis flare up and have been housebound for the last several months so I wouldn't get sicker to prevent having the surgery rescheduled. Our immune systems are compromised and we try to manage our lives to avoid as many other illnesses as possible. I think it's somewhat easier for me now because I live by myself. However, iv'e had to meet friends at the front door, ask if they have a cold or cough and bring out the surgical masks. Can't wear them myself because I'm also on oxygen and don't get enough room air with mask on.

Managing these things isn't easy and it's trial and error, but you get better with it with time. It's not possible to totally manage everything without living in a bubble, but you get better as time goes on.

Feb 02, 2016 8:33 AM

Ry, I'm 15 and also have A I diseases. A cold knocks me out for at least a week (in bed, no moving or talking) and the flu...two to three weeks. After either one, I usually manage a secondary infection, and need antibiotics.
It's hard. I don't know entirely why, but this year has been the best for not getting sick on top of everything else.

Feb 02, 2016 9:29 AM

Just dropping in to say hey, new to this and checking out how to post. It sucks that you suffer like this, it wears you down, being depressed & feeling depressed seems to go hand in hand with pain & suffering.

Feb 02, 2016 9:37 AM

Trying now to edit my comment, it's meant to read 'Feeling worthless'....
Can't work out delete & edit functions on this app.... Looks like I'm going to the help guide.
Best wishes for improved health

Feb 03, 2016 9:15 AM

Thank you all for the kind words! I have 5 children still at home so it's impossible to keep germs out for me. I'm not going to ruin their childhoods I feel like I've done enough of that already. Cold and flu's knock me down for 2 weeks to a month so I know that feeling. I get pneumonia every time! Every time! My lungs now have so much scar tissue that when stuff gets in there it is incredibly hard to get it back out.

So even a cold could potentially be life threatening. Except I can tell you the minute it changes to pneumonia and my doctor knows I know what I'm talking about. So I go see him when I get the cold and then when pneumonia hits I call and he prescribes my stuff and I treat very aggressively at home. It's so far worked for me and I've never had o be hospitalized due to pneumonia. Thank the Good Lord.

I also am very aware that just the pain leads to depression and on top of that I have an anxiety disorder and that causes depression too. Most of my depression is simply me wanting to be normal. I have not come to terms with the fact that I'm not and never have been and never will be. That's so hard for me to swallow. My Dr asked me at the beginning of this ... Are you sure you really are ready for the answers even if the answer is nothing can be done about it??? I thought I was. I told him absolutely I need answers. I still need answers. I still have to do this if I ever want to have the best meds to treat what's wrong. We have to know what's wrong. But being told there is no cure and I'll never be normal has been a LOT harder than I thought it would be.

Feb 03, 2016 9:16 AM

Oh and to top it off I ran out of my ms contain (morphine) at 6am on Monday bit didn't realize it till 9 last night when my withdrawals got out of control. Now I'm dealing with those and have been all night til I can get the script filled at 9 this morning.

Feb 03, 2016 11:47 AM

My script finally just got here. Thank God. I'm not ok at all. Prayers appreciated!

Feb 03, 2016 12:10 PM

RyleyGrey, first thing I'd like to tell you is this... What is normal?? The word you refer to is different for everyone. For instance, a doctor will tell you that "normal" body temperature is 98.6 degrees. Well, MY normal body temperature runs anywhere from 97.0-97.2 degrees. There are varying degrees of normal. There is nothing wrong with you, you are normal, I'm normal and so is everyone else here. We just happen to be sick. We live a life that has pain and the difficulty in moving, etc.. That doesn't make us abnormal. We speak, we walk, talk, eat, love, just like everyone else. I'm sorry that you're not feeling well. It doesn't get easier although you do "get used to it" which is something nobody should have to do. I give you kudos raising 5 children when you are in such pain. You haven't ruined your children's lives, if anything, this is the time that they will learn how to grow up to be compassionate, caring and wonderful adults. They will learn empathy, understanding, compassion and will be ok. You are a wonderful person. Your children will follow by example. I hope that this helps you, even if just a little bit. Sending got gentle {{{Hugs}}} and prayers that things begin to settle down and that you have a more peaceful and less painful days ahead. 💕🙏🏻🌻

Feb 04, 2016 12:41 PM

RyleyGrey, I wholeheartedly agree with AlwayZ. I also have lower than average body temp that's normal for me. I've not had a fever since high school, instead I get child as my temp drops. I've dealt with chronic health issues since my late 20's, raising 2 children. My youngest was only 9 miss old when I was told I couldn't pick her up anymore. What?!! I was a start a home mom. What was I to do except teach her early independence and climbing (she had big sister's help). Both my children grew up to be wonderful compassionate women's. Although between 15-24 I seriously wondered if they'd ever grow up. Lol. As long as your children know they are loved, it doesn't matter if you played cards out colored with them at a table or on the bed, for 5 minutes or 50 minutes. Be open and explain in terms they can understand, when Mommy isn't feeling here best right now. Hugs, love, & prayers! 🙂🙏💕🌼

Feb 04, 2016 6:32 PM

Oh my Gosh! I feel u sweetie. ..I have lupus fibromyalgia sjogren arthritis and I feel always sick and can't work but still working for all the bills!

Feb 04, 2016 9:25 PM

I have lupus, SLE, itss a nightmare, but it can be controlled. My meds help, but you definitely have to make some lifestyle changes. I'm actually in a horrible flare now, but I brought it on, over exertion stress diet,ect. I have a ton of other problems as well so I feel defeated alot, but this is the hand I got dealt, if you take care of yourself..it will get better..good luck!

Feb 05, 2016 9:17 AM

Rileygrey, I feel your pain I have hypothyroidism, back issues, migraines and I am currently awaiting a possible RA diagnosis. I myself have to get up at 6 am and get kids off to school and help with a special needs child at home. There was a time not to long ago that I felt useless and no good to my children, just like Alwayz and Flappys said you are doing your best and you will adjust just ignore the ignort and teach your children what all your issues in tail. If they are old enough have them go with you to the doctors and maybe they will come to understand that this is real and you are not "faking it". Love and gentle hugs and prayers to you from an understanding Mom.

Feb 05, 2016 11:46 AM

I totally get you! I am sick with something vital I got from my kid right now & with 2 AIs - depression - being in bed is about all I can do. Just trying to stay positive cause my husband doesn't understand. Hang in there, it's supposed to get better?? ;)

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