I seriously thought I was handling this disease as best I could with a positive attitude and not too much of what I call 'victim speak'. I ended up in the ER last night with a massive asthma attack. I had just finished a round of steroids and antibiotics and just two days ago, whatever I had was back with a vengeance and in my chest. They ended up giving me 2 breathing treatments and 60 mg of prednisone.
This bout scared me. I was with my family at my niece's graduation party so thankfully I had other adults around to take care of my children. But what happens when no one else is around and it's just me and my kiddos? I'm scared. I'm scared for them because they need me more than ever now. Everyone keeps telling me to slow down. How in the heck can I make that kind of lifestyle change with two kids that need me?
Seeing my daughter's face while I was gasping for air broke me. Sorry just needed to get this out there somewhere. :)
I know how scary an asthma attack can be, I've had them myself when I was first diagnosed with asthma. Do you have a nebulizer that you can take breathing treatments at home? Do you know what your triggers are?
I don't know how old your kids are, but do they know how to call 911 and call your family for help? This year, the allergy season is really bad where I live. Is it the same for you?
I hope you are doing better, and get some advice from other members.
I’m sorry you’re going through that. I’ve been there…and I’m there. My kids are 6 & 7 right now and I’ve been dealing with lupus issues since they were 1-1/2 & 2. They’ve become super sweet, caring kids and so helpful. I had a severe asthma attack when we moved out to Wyoming and knew no one- luckily my husband wasn’t working. I’ve sin e moved back to PA. When people tell you to slow down- LISTEN. It will save your life and strength…not easy, I know. I’m 32 and get so bad at night sometimes that I need a walker/cane to get up/down my steps or I crawl…not every night, but enough. I’ve lost alot due to it but I’ve gained sooo much more…compassion, understanding, ability to see who truly cares after they’ve seen how bad I can get and especially a stronger relationship with Jesus! I am blessed to be where I am, but we’re still entitled to our bad days! God bless!!!
I know that was my fear too Morgan, because I have a history of PE as well. I was so scared they were going to admit me because the last time this happened, it was 5 years ago and I ended up in the hospital for a week on oxygen.
My son is 9 and my daughter is 6. I'm a single mom who has full custody of my kids and my closest family is 2 hours away. I am lucky to have a fantastic group of friends who will drop anything at a moment's notice to come help.
When I was first diagnosed with SLE, I had a conversation with my son about how to call for help. I told him that if we were ever alone and I wasn't waking up or I told you to call, to call 911 then take your sister and go pound on every door you can in the apartment complex until you get someone to come stay with you until help arrives. We had that same conversation again yesterday. He told me "I got it mom, I have to be brave and strong then once help comes I can cry and worry." It just breaks my heart to even have to have this conversation with him.
The ER doc did send me home with a nebulizer this time. So that makes me feel a little better if an episode like this comes on again I may be able to fix it in time.
Thing is I haven't had one in 5 years. I had asthma really bad as a kid, but my Lupus flares usually entail rashes, pain, fatigue and stomach cramping. Those I can handle, this one was just flat out scary. But I think it was an eye opening experience for my family so they can see what I deal with on a daily basis with this crap shoot of symptoms.
I think what triggered this one was I was already down not feeling the best with a chest cold, then I was out in a barn for my niece's graduation party where it was damp and it's been raining here for days.
I was just telling my mom about this group last night. About how I feel so comfortable here and am grateful for this support system. This group is seriously fantastic. :)
Morgan said:
hello momma2mm
I know what you have been going through is scary, and you really don't wish for your children to experience anything they don't have to. a week ago I went to urgent care and wound up in the ER for lungs and extremely high blood pressure, their biggest fear I had another PE.
Trisha is right - make sure kids know how to call 911 and family. you can post a number list near a home phone, and also carry in your purse. Triggers absofreakinlutely need to be known, and a non trigger can become one if you are flaring! (am allergic to everything, including myself)
If you are not seeing a good pulmonologist, a great time to start. They know all the tricks to help keep you breathing clearly. My own experience is if coming off steroids, my body has rebounded, still wanting them. inflammation will kick in with a vengeance! important to do a very slow taper to wean off. (unable to take them anymore, have to use natural means like anti inflammatory diet, mullein tea, etc)
there are so many things that can cause lung infections. in susceptible people, even things in a normal, healthy natural environment. A sputum culture will tell exactly what infection you have, and help you to get proper treatments. Not all infections respond well to antibiotics, some are fungal or resistant.
other than that - do not try to be superwoman. reach out to family and friends to ask for specific help. driving, housework, anything you can, let others do. You can take them back over as able, when out of this rough patch. the love and cuddles and interaction with your children is all that matters in the long run.
i do not have asthma but i do have severe allergies and haive had a few scares, my allergies are all year long, not just seasonal and i have to take shots 2 times a week. i dont know if this will help but it has me, it is called my pure mist and it is your own personal steamer and it is for sinus congestion, sinusitis, allergies, asthma, cold, flu, sinus headaches, i bought it online and it was around 150 bucks but it has been well worth the money-google my pure mist and check it out, there are other brands on the market that are a little cheaper but i chose to get this one.
I know what you're going through. I feel like a fish out of water, get desperate just for a gasp of O2. Hypoxia is exasperating. I hear you. I feel you. You're not alone in that corner.
Luckily, there are always medical reliefs for the ailment. My dr. has equipped me to treat those emergencies at home since last year. I got tired of riding ambulances, doctors, and hospitals every month and for every "scary moment", fearing for your life.
It is still hard every time it happens but I give you my strength. My father always said that no one dies the night before it's time. I hang on to the Lord and don't let go.
Sometimes we focus so hard on just getting thru the moment that we forget to make long range plans. I dont know what age your children are but my son was four when I had my first hospitalization. When I was released he and I talked about the Lupus and when he curled up in my lap and cried it was heart rending. Everyone is unique and what made my son feel better was having a plan and what made him feel better made me feel better. Later that year I made a living will and oddly enough that made me feel better. He will be twenty one in august and now educates bis friends on people with lupus. I hope that helps God Bless. Hope you feel better.
Hay!, take a breath of air and relax!!! You might need to slow down a bit-smile. Don’t over due things, most of all the kids will understand , if you have explained to them that mommy is not able all the time to do something’s like before, kids have a good sense of things and will handle alot , more than we as adults do-not forgetting better than adults. I don’t know their ages , but if you take the time to share what you are going through with Lupus , believe me, it will help , you and them. I have grown kids and it worked , even though my daughter is the oldest , and she is so emotional the two boys have to deal with her at times for me-she is a bag of tears and it has been 3 years for me with Lupus!!! But sometimes she gives me hugs and try her best to have conversations with me about her 2kids , which my granddaughter handle things a whole lot better than her mom-my daughter. LOL. It will be okay ! You just have to sit the kids down and make a plan, like you do if there is something serious, like a fire, someone hurt and can’t talk, set planners of what to do if you all are alone, trust me the kids will know !!! Give them credit?? They understand with the help of God!! When I did this my granddaughter would come over on the weekends for weeks , to practice this plan with me. Don’t just make it , act it out with them -kind of like make believe , really it do help!! Hope that this help you and yours good luck…Beverly L.
I am so sorry to hear this is happening & though I do not have children, I truly can imagine how it must feel & how u must feel about worrying about their reactions. I adopted a child, now grown woman------------& she sometimes does not understand, 4 it is difficult for me to even understand the fear or the feelings I get, due to extreme pain, etc.
I am off a lot of the meds & trying holistic treatments------which I always believed in before I came down with Lupus.
I have a very strong feeling things r going to get better for all of us-----very soon. Maybe it is my strong belief in God. Maybe because we all will learn something amazing from this journey??????
I have no answers but I just wanted to tell you I feel the same way. I have three kids, ages 10, 8, and 4. I also work full time as a special education teacher and have a husband who is out of town 50-70% of the time for work. Everyone keeps telling me to slow down too. I am struggling to find a balance between taking care of myself and being a good mom. I don't want my kids to suffer because of this. How do we slow down? Tell them mommy is too tired to take you to practices so you can't play sports? That is not realistic. So we push forward. I will tell you that several other people in my family have autoimmune diseases and spend half their days in bed. I am up moving every morning and pushing through the fatigue and pain. I know that I am doing so much better than them because I make myself stay active. Hopefully you have a good support system in place to help you through the bad days. You are not alone, you are a good mom, and there are many of us on here that feel scared about the future with our children. Hang in there:)
Hello, yes we have to press on, even when our body says “That is not going to happen 2 day”. But Lupus has a way to make us fall into ,"Am not going to do nothing, and we find ourself in the bed, the pain that comes with those thoughts are Crazy! But for the Love we have for our kids, family, and close friends, we try (sometimes) to do it, enjoy the moment for what it is and keyed it moving -somehow, Don’t let Lupus run your life…Beverly L.
God bless!!!