They just dont know any better

Good morning. Well, this week seems to be a little better. I am still in this flare pretty bad. I went to my Dr on Tuesday, I have a bad kidney infection, my knees are deteriorating, and I am now having more seizures, so she wants me to use a walker, preferably one with a seat because my seizures have been getting worse, i usually have grand mal seizures but the past month or so I have been starring off or slurring my words, or just losing time. My neurologist said that I am having absence seizures. I would have never noticed it, but someone had left a discussion about having these seizures. Of course, I cannot find the post. im having one of those brain days, where it just isnt working right. Anyways, the Dr wants me to be able to sit down right away if I start to feel funny, since these seizures are happening every day. The problem is that I am on medicaid so they will not cover the walker that they want me to use. My son, 13yrs old, (God bless him) got online and got some prices for these walkers, and they are ridiculously priced, so I said a prayer and decided to look on craigslist. I was able to find one that is perfect for me and they only want $35 for it!! Praise God for answered prayers!! I am looking for a ride now to go pick it up. I am having a really hard time accepting this illness, and being told that I need to use a walker is even more depressing. I am only 33! Its hard enough that people look at me funny when they see my kids helping me walk, or make rude comments about me instead of trying to understand. My boys always know the right thing to say to make me feel better, one of those times happened in walmart, a couple walked by and made a comment that "I shouldnt be going in public being on drugs if a child has to help me walk"! I was furious but kept my cool because my 10 year old was with me. I tried to hold back the tears and he just looked up and squeezed my hand telling me that it was ok, they just dont know any better! I have always strived to instill good values in my boys, I hate that kids these days are out of control. Its moments like these that make me so realize that I am doing ok at raising my boys, although I think that they take more care of me then I do of them. I am still having trouble getting my boyfriend to try and understand what I am going through, the 3.5 yrs we have been together I have been steadily getting sicker, I wish that he could have met me before, to know the "real" me. Unfortunately this me is the only me he has ever known. He tells me all the time that most of it is in my head.That I need to eat better, and get out more. I am so tired of hearing people tell me "what I should be doing" yet nobody wants to listen to how I am really doing or feeling. I don't have much family support either, i havent spoken to my parents in months, since I told them i had lupus. I talk to my sister almost every day but she tries to stay way from the subject of my health. They say that when you get sick, you find out who your true friends and family are, turns out I lost everyone. I try to keep my faith strong, I know that God has plans for me, I have found that it is so much easier to give everything to Him to handle. Even doing that, I still find myself questioning Him.

Thank you all so much for giving me support and compassion...and friendship. Its good to know that I have true friends that will always understand and never judge. My prayers go out to each of you as we face our day, may you find peace and relief from some of the pain. It is time for me to go try to take a nap. Hugs to all

I think your boys are the best and it's wonderful that they understand your pain. Don't worry about people or family you have us we understand each other, just continue to pray and remain positive and God will see you through!

Blessings & Hugs



I read this and was instantly touched. Just remember people are ignorant. Point blank. Im 24 going on 25 in July, I was diagnosed with Lupus almost a year ago. It has been a long, tiring journey. Unfortunately, living with an "invisible disease" is considered a blessing, but not when it comes to people taking you seriously or understanding. Iv lost almost every "friend" Iv had because no one can put themselves in my shoes and understand what Im actually going through. I continue to work 40+ hours a week and by the time I have any time for myself, all I want to do is rest. Unfortunately because I "look fine" people think I use my illness as an excuse to get out of social obligations. Unless youre going through this yourself, its almost impossible to get anyone else to understand. Bad enough when you tell people you have Lupus they don't even know what it is. I understand the frustration youre going though. Keep your head up, remember that god doesn't give you more than you can handle. It takes a strong person to go through this. Take care & god bless.


JoJo, stay strong. I know what you mean about your wishing your boyfriend knew you 'before' you got sick. I got sick shortly after my husband and I got married. Luckily he did know me well before I got sick, although it was a long distance relationship. He was an old high school boyfriend that I re-united with at a class reunion. We 'dated' for about three years before I moved out to where he was stationed in the Army. About two months later I developed Lupus they think from a live flu vaccination. It took over a year to be DXd. But fortunately for me, he still loves me and helps me when he can. I wish your boyfriend could learn more about Lupus and help you out more. Good Luck.

You are so strong! It’s so hard to be strong the amount we have to be, but you are doing a great job! I too was touched by this post and am just sending positive thoughts your way. Hang in there.

Hi JoJo,

One thing I have learned, is God gives back what you have lost.


You sound so great. So much better than a year ago. You are an inspiration...yay, you!!!

Trisha said:

Hi JoJo,

One thing I have learned, is God gives back what you have lost.