Re: catching up/long

[Guest guest]

Hi ,

You sure saved up a lot of stuff.....bout time you unloaded on someone.I'm glad we are here for you......Heck..I'm glad we are here for all of us! We need each other.!

Your Husband sounds like a real Sweetie......it's a shame that he got fired the way he did, something similar happened to my daughter recently.

She has driven a School Bus for 17 years without one single accident, or tichet and has perfect attendance badges , and safety badges , and letters of commendation........then a few weeks ago, a car shot out of an Apartment parking lot right in front of her bus and she slammed on the brakes, but the bus hit the car anyway.No one was seriously hurt.....some of the children went to the hospital, then were released immediatly.....THANK GOD!

My daughter got a ticket for not signaling for a lane change, because the man driving the car that shot out in front of her told the policeman, at the scene that she changed lanes and ran into him!

Now .....she had about 6 witnessess to the accident who offered to testfy, she went back to the scene and took pictures of the tire marks where she had braked and left perfectly straight tire markes never swerving out of her lane, and the tire marks of the car that ran in front of her......Now the driver of this car did not speak English.....Had no driver's license, insurance, or inspection sticker.......Yet he didn't get a ticket ........and My Daughter got fired that day.....It is a hard and fast rule that if a driver gets a ticket while children are on the bus it is immediate termination !

She has had to hire an attorney to appeal the case.....and file a grievance against the Union......She was given the opportunity...to stay with the school system as an attendant on the bus......at half her pay as a drivet.....Which is helping , but if She doesn't get her job back as driver they may lose their house !

I'm sorry about you and your husband both having such devastating diseases.....it must really be hard...but I love it when you said whoever feels the best does what needs to be done. Sharing the load is a wonderful way to stay close....even with poison Ivy.!

I can't begin to answer all your questions, but I do have one suggestion.....If you are afraid of hurting your doctor's feelings by asking for a referral to a Rheumy.....then call your insurance co. and ask for a list of Rheuamtologisst in their network......besides, if your doctor is as caring as you say she is she certainly would want you to have the best care possible.

C.

catching up/long

Hi,

I know I haven't posted lately, but I always read all the messages. My online time is limited right now, so I just usually sign on long enough to get my email, then get offline to read it. By the time I get thru the messages I'm hurting to much to sit here any longer & can't answer everyone's messages. But you guys always make me laugh & some days there sure isn't much to laugh about. Just wanted to let you know how much you are all appreciated!

I'm just beginning to come out of a flare (I hope!). I know what caused this one...started out with a cold in mid March, that turned into a sinus infection by Saturday morning the 20th, Sat. evening I fell, went to dr. Mon., got x-rayed (hairline fracture in hand, sprained wrist, elbow & shoulder) & started antibiotics, broke out with poison ivy Tue.(another story, rather funny I guess!), accidentally got sunburned Wed. By the following Monday, I was so sick I could barely stand. I've spent most of my time on the couch. Whenever I have a flare, I just want to sleep. The fatigue is what really gets me. If I had not gone thru this I would never have understood what real fatigue is! Does everyone with lupus have this unnatural, bone deep fatigue? I can't "just rest" & feel better. That & the, I guess, brain fog is the worst. The pain isn't fun, but compared to not being able to think, having terrible headaches, I'd rather hurt. My head feels like the inside of it is inflamed, burns, hurts & I feel spacey. Does that make sense?

The good part is that my husband, Jace, is so understanding. He takes care of everything so I can rest. We've always been very close anyway. He milked cows on a dairy farm since we married nearly 26 yrs ago. He would come in around 7am & we'd be together until 3:30pm when he went back to milk, then he'd be home again between 7-8pm, so we had lots of family time with the kids while they were growing up. During the day, he had another business that I helped him in, so we were always together. When he worked evenings is when I ran kids to practices or games, ran errands, cleaned house, etc. He is on disability now due to Parkinson's Disease at 47. He has problems with balance & other stuff, but the worst part is that PD causes Alzheimers like symptoms in some patients. He is worse if he's nervous, so re-training was out of the question. He was sick for 3yrs before we got a diagnosis. During that time he found out how hard it is to be sick & "look fine"! He was fired from the dairy after being hospitalized for 3 days with chest pains. They said "you're sick & they don't know what's wrong...so we don't need you anymore". He had been at that farm for 10 yrs & never called in sick or anything like that! We found out the hard way that in TN, employers can do just about anything to you!

We lost our home (went with the job), exhausted our savings, & went thru hell before we finally started to get straightened out.That was 3 1/2 yrs. ago. If it hadn't been for family, friends & our church we would have lost everything. We are just starting to get our lives back in order. It's hard with both of us dealing with these diseases, but we just sort of take care of each other now. Whoever feels the best gets to do the most that day. lol

He is the most understanding, gentle person you could ever hope to meet. Anyway...I'm getting off track! lol Brain Fog!!!

Another question I have is regarding the sun. I know it's not good for us & I've seen some people on here talking about rashes after being in the sun. But, I don't break out if I get to much sun. Instead it seems to cause a flare. Does that happen to anyone else? Within a few days of over exposure, I get achy, headaches, low grade fever, fatigue, etc. I hadn't planned on being out in the sun the day I got burned. I went with hubby to his brothers house to watch while he loaded some stuff. The "only take a few minutes", turn into 2 hrs. with nowhere to get in the shade! I haven't felt well for the last 2 mths., then all the aforementioned crap happened & I really got sick. Finally got thru the worst of the fatigue, pain isn't quite as bad (still here, tho), now it's migraines!

I know someone also wondered about lupus symptoms being worse during PMS. Mine sure are! I had noticed several years ago that I ran a low grade fever about then. Way before I was diagnosed.

Also saw falls being mentioned. Is that common with lupus, cause I sure been doing my share of that!

My pcp still hasn't referred me to a rhuemy. She thinks she can handle it. I really like her as a dr. & a person. She's very thorough, gentle, & listens. I don't want to hurt her feelings or anything. How do I ask for a referral without doing that?

I'm sorry for rambling on so long. I guess I have a lot pent up. My kids are 23, 22, 19 & 17. The oldest is the only one who seems to believe "Mom's" really sick. Bothers me a lot. My mom is worse than they are! I'll be 45 yrs. old next Thursday & should be old enough that what "mom" thinks shouldn't bother me, but it does! I'm really, really glad I found this group. It helps so much to see that... 1)I'm not crazy! 2)I'm not lazy 3)You guys understand how I feel. 4) there are answers out there if you just ask the right people! The lupies support helps me thru each day.

Now for a good thing...Jace & I are getting away for the weekend. We raise parrots. This weekend there is a bird fair in Nashville, TN at the state fairgrounds. & we have sales tables there. We will be there on Sat. & Sun. hopefully selling some birds & these natural tree play gyms that Jace makes for the birds to play on. We always look forward to these weekends because it's such a break from routine, we get to stay in a hotel by ourselves , plus we get to see friends that we may only see a couple times a year. And, if we're lucky, make a few much needed dollars! LOL

We will be leaving around 5am in the morning. If any of you live in the area, come by & ask for the Burnette's. Everyone there knows us. Come say hello.

Oh yeah, the poison ivy story. I'm extremely sensitive to it. Break out if I even look at the stuff, right? Well, Jace worked in & around a bunch of it all day Sat. (same Sat, I fell). Evidently he didn't scrub hard enough when he took his shower. I broke out everywhere he touched me....need I say more?!

NOW...Happy Birthday to all of you who have had birthdays recently.

Mojo, I hope the chemo isn't to bad this time. I'll be praying for you

To all of you dealing with depression right now, you are not alone. I think we all have been there at some point. Some of us more than others. But it will get better. I always keep you all in my prayers.

Well, I have complained, whined & kept you here for far to long! LOL

I hope you all have a wonderful weekend. I'll be checking email as soon as we get home Sunday night!

Hugs,

eresa

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