Lupus (family can't relate

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una dia mas
New Member

Date Joined Jun 2013
Total Posts : 1
   Posted 6/25/2013 5:31 PM (GMT -6)   
Feb 2 of this year I found out that i have lupus after 2 years of always being tired and in pain. I have already heard the one you don't look sick. But my family i think have beat that one. I have five children, thank goodness the youngest is 19. My oldest is 28 and told me that i just ruined her dad's life because we can't enjoy all the outdoor sports that we used to do. I tried to explain that he could still due everything like camping and kayaking i just had to do it in the morning or evening. She doesn't stop and think that I miss the sun. I love the water when we camp I am always in the water. We live in the mountains in Colorado I can play in the coldest lake all day, people think i'm nuts. She doesn't stop and think of how I am being affected. She still insisted that I was ruining everything she doesn't even live in the same state and sees us 4 times a year. My mother said that i better stay healthy so i could take care of her.
My father passed away in Dec. My sister is taking it very hard. She is always telling me why did you have to go and sick now when i need you the most. They act like I chose to be sick My youngest thinks its all in my head. My son who is 27 and went through breast cancer with his wife is the best. They both researched lupus and are always checking on me. My 20 is so caring. My 23 year old thinks that the drugs will make everything go away.
I try to explain whats going on but they don't want to listen. My husband is supportive. He is Bi Polar and is having to up his med's because he is starting to get angry with me always being tired and in Pain. I work 10 Hr days I am a EMT and want to be able to retire I am 48 years old. But sometime i go home and go straight to bed.
My fear is he isn't going to stick around very long he is upping his Med's and I have been able to lower my Paxil for anxiety and panic attacks now that i know what is happening. Some time I feel like moving out and dealing with everything by my self. The 23 year old and her 2 year old and husband live with us, so does the 19, and 20 year old the are all in college. The still think i should be cleaning and cooking on the nights that the have classes. I am so tired that I can't. My husband will not cook or clean he thinks everyone else should. I have gained 20 lbs on the prednizone. I'm 5 ft i now weigh 150 it is sad when i am on scene of a call and have to crawl to the nearest chair so I can pull my self up. I am new at this and venting. I have accepted it so why can't everyone else. Anyone no how to drop 20 lbs fast. Before I have to go back on the prednizon. I have another question one day I can fit in my pants the next day I cant. Same with my shoes. I understand the shoe part with the swollen joints. The pants thing I don't understand. Sorry for all the questions

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 6/25/2013 10:02 PM (GMT -6)   
Hello and welcome!

I am so sorry that you are having to deal with all this. Your family has to learn how to cope with this just as you do. Because you physically feel the changes that are occurring it makes sense that you are coming to terms more quickly than they are. But you need their support! Perhaps they could read some of the posts on this board? And please do make sure you mention to them how you are "feeling". I don't mean physically, but emotionally. You are experiencing all the physical symptoms of lupus, as well as the emotional burden of realizing that the future is no longer as you had planned!

Yes, some things cannot be helped - you will have to make some changes to your lifestyle. The adults who live with you need to know that things have changed and they are going to have to change, too! Everyone (other than the 2 year old) is certainly able to cook and clean for themselves. Or a rotating schedule of some sort? Something that eases the burden on you and shifts some of the household responsibilities to them?

This disease forced me to begin prioritizing my life. I still do a lot of what I did before but in more moderation. And I have learned to say no. Sometimes that is simply the only was to feel better! The adjustment takes time and you are all fairly new to the diagnosis. Stay strong.

Come back and vent!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Zantac, Bactrim
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Vicodin, Prednisone.

Regular Member

Date Joined Jan 2013
Total Posts : 47
   Posted 6/27/2013 2:17 AM (GMT -6)   
I am so sorry that you are dealing with lupus and family issues. I am lucky that I have a supportive family but have experienced people say that I'm faking it or why don't you feel better yet? In the beginning, my husband was very confused and I felt like he didn't believe me a lot of the time. I started making him come to my doctor's appts and read up on lupus. about a month ago, I took him to a lupus conference that discussed different ways lupus impacts patients and also what its like to be a caregiver for a lupus patient. With all of these things, he has become very supportive, reminds me not to do too much, and offers to help more often. I don't know if any of this would help your family but at least its a start. I wish you luck and hopefully one day soon your family will understand that you definitely did not want this disease.
Stay strong,
Nicole- 25, married, no children, Registered Nurse
Endometriosis, Lupus, Raynaud's, Degenerative Disc Disease, Migraines
Meds- Lo Loestrin Fe daily, Plaquenil daily, Prednisone daily, Prilosec daily, Celebrex BID, Tramadol prn, Dilaudid prn

~Don't worry about tomorrow, tomorrow will worry about itself. Every day has enough trouble.~

Regular Member

Date Joined Oct 2012
Total Posts : 23
   Posted 6/27/2013 6:17 AM (GMT -6)   
Nicole...where do you find a lupus conference? That would be soo helpful for my family also!

Una dia mas....oh how I can relate!!!! My husband is also bipolar and my 20yo daughter has borderline personality disorder. She is also a recovering addict. Hubby just changed ,meds also because ,for awhile he thought he didn't need them anymore. I'm sure you can imagine how that went for a few months. Most of time they are helpful. Hubby understands now that I can't do what I did before. Cook, clean, laundry, food shop etc all in one day. Now it's want dinner or you want me to vacuum...pick one! Haha. I just don't have the stamina and everything overwhelms me. Everyone will tell you stress isn't good for your health blah blah. We know that but cannot change other people. There are times when I'm still having to explain my condition to my husband. He is supportive but does not understand the impact that lupus has physically and most of all emotionally. Post things about lupus on your fridge...they all go to it for one thing or another. One day they will read it. I understand completely what you are going through. Stay strong, try not to overdo it or you will resent all of them (even more).
Undifferentiated connective tissue disease, fibromyalgia, chronic fatigue, tmj, arthritis, degenerative disc disease

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 6/27/2013 9:31 AM (GMT -6)   
This is a good illustration of Lupus fatigue that is helpful to explain things to family members.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Regular Member

Date Joined Jan 2013
Total Posts : 47
   Posted 6/27/2013 10:11 PM (GMT -6)   
I subscribed to my local lupus chapter.. I live in the St. Louis metro area so ours is called the Heartland Chapter. Search for your local chapter and if you follow their events they should have conferences. I also receive emails from them on events they are hosting. Good luck with finding yours and getting involved.

And Jend719, I love your response! :) Its totally true when it comes to fixing dinner or vaccuming or doing anything else for that matter... pick one. I've done WAAAYYY too much today and I'm sure I'm going to pay for it tomorrow!

Here's to hoping for low pain days for all of us! :)
Nicole- 25, married, no children, Registered Nurse
Endometriosis, Lupus, Raynaud's, Degenerative Disc Disease, Migraines
Meds- Lo Loestrin Fe daily, Plaquenil daily, Prednisone daily, Prilosec daily, Celebrex BID, Tramadol prn, Dilaudid prn

~Don't worry about tomorrow, tomorrow will worry about itself. Every day has enough trouble.~
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