My Bad News

So I haven't posted in a bit and this one isn't going to be about anything good, but I can finally write about it without getting super upset so it is time to write about my feelings and next steps. My fatigue has been getting worse to the point that I feel like I can no longer function so I decided to go to a new Rheumatologist to see if he had an ideas to help my Chronic Fatigue. Due to my history of Lupus and to another Dr thinkinkg that I have Fibromyalgia he decided the first step would be to do some bloodwork(14 vials to be exact). So I went to the lab and then would return to see him again in 4weeks.

Last Sunday after helping my mom move, my fingers started to ache like back when I had Lupus just not as bad. I thought maybe it s just from the stress of the day and doing a little help with the boxes. By Monday they were worse along with my wrists. Thankfully though I had my appt with the Rheumatologist the next day.

Wed came along and that is when my world shifted. My Lupus is now back with a vengeance, I also now also have a disease called Sjogrens, along with Fibromyalgia. All of these things are bad, but combined even worse. So I have been in a bad place since last week. Trying to fit all of the pieces together and see where to go from here. Asking the questions if I am going to be able to see my kids grow up(and freaking out that I am not). I thought my Lupus was gone along with my old Dr but it turns out that it was only in remission. That in itself is a huge shock to my system. I guess I took it for granted that for the most part I was just tired but feeling okay. Now my life is so different and up in the air.

To explain to those of you who have asked what all this means is this. Extreme fatigue(not like I can even explain), joint pain in all of my fingers, wrists, shoulders etc, dry painful eyes and skin and feeling everyday like I have the flu.

What these diseases can cause, kidney failure, stroke, heart attack, liver and major organ failure, increased susceptibility to infection. Basically nothing good. Their is no cure, only treatment to lessen the symptoms and keep the bad things at bay as long as possible. I need to have a positive outlook to help my stay strong and less sick but right this moment it is very hard for me. So if I am not myself right now I apologize in advance.

I am searching for things to make it better and if anyone has an ideas let me know as I am open to all things.

Of Course

So we had a great time in Reno this weekend and as we were leaving, Kaitlyn came down sick. So it was good that we were heading home. Then on Monday, Julie started out with my horrible cough....I know she is miserable because I know that I was. All I was thinking was that she is the superstar in class this week and the whole week is about her and this comes up. So she went to school yesterday and then last night she came in crying that her head hurt so bad, she was burning up and feeling like crap. Uh oh....so this morning she had a 101.6 fever and looked horrible. I didnt want her to miss school due to her special week but I knew she needed to stay in bed. Bummer...now I only hope that she is better before her big birthday party this Sat....that would be horrible. Lets keep our fingers crossed.

When you find out who your true friends are

Yes, this is going to be a winy complaint filled post, but oh well. If you don't want to read it, then don't. Lets go back to last Friday...everyone else in my family has bronchitis and is on antibiotics(Kaitlyn also has an ear infection) Anyhow I started to get a cough on Friday and I was thinking oh no, please don't let me get this since I had just finished the antibiotics for my sinus infection the day before. So as the weekend progressed, my cough started to get worse and worse. Sunday I decided to go to urgent care. They told me that I probably had bronchitis too but they didn't want to give me antibiotics since I just finished a course so they sent me home with some cough medicine that didn't work. As Tuesday came around, I was feeling like crap, I had a fever, the chills, and a cough that I thought was going to hack up a lung and I felt like I was going to collapse, so I made a Dr's appt for 3pm that day. As noon rolled around, I realized that I couldn't make it until 3, so I dropped the kids off at daycare and headed to the ER. Boy am I glad that I did. I have a bad case of Pneumonia....so they gave me 2 strong IV antibiotics and fluids and debated if the should admit me or not. Because of my Lupus, my body is less able to cope with such things and I am also on a drug that suppresses your immune system. To make matters worse, when they were drawing my blood, they hit a deep nerve in my arm....(how the hell they did that I have no idea since I have blood draws every 6 weeks and come on, I am 30 so I have had a lot)anyhow, my arm went straight up and a stabbing pain shot from my elbow all the way to the bottom of my wrist. I was in tears.....even after she was done, my hand was numb and my arm was full of pain. Well, today, I am unable to use my arm, for if I move it, I have a stabbing pain in my wrist and my hand, then my hand goes numb. It is supposed to get better in a week or so....great. So to make a long story a little shorter, they sent me home, with strict instructions that I am not like most people who have this. I am more compromised and I need to go home, stay in bed and rest for 2-3 days until I feel stronger and then I need to start back slow. Well, my husband told me that he couldn't miss work and I cant chase after the kids, because as it is, it is hard to breathe and if I move it is 10 times worse.

So I called my "good friend" and asked her if it was possible that Adam drop Julie off after school and then pick her up on the way home from work because Kaitlyn will be napping and I can stay in bed. Well, she said that she couldn't watch her because she had to finish Vacuuming and mopping(her already spotless house). Well that was a kick in the face. So I tried the next person with whom I left a message on their voicemail and they just never called me back. What a feeling, to know that when you are in a bind, no one gives a shit. People who are supposed to be good friends, look for excuses not to help out. Whatever happened to the days when people went out of their way for others in times like this. I know if they had called me, I would have made a way to make it happen. I guess people like that are far and few between. One person who I wouldn't have called a friend before a few months ago, showed her true colors when I broke my foot. Despite her having 4 little kids of her own, she cooked us dinner, made us goodies, watched Kaitlyn and Julie and picked up Julie from school and brought her to my house so that I wouldn't have to go out. She is an angel in disguise. I thought about calling her, but she has helped me so much, I just couldn't do it. When you get older, you have a few select friends and you want to keep those friends that you have, I guess it just makes me sad and hurts my feelings to know that when I need help, they wont be there for me. So I lay here alone, feeling like I was hit by a train and struggling to breathe. I just pray to god I get better soon.

Here are the lyrics to a country song that I have always liked and I guess it really came into play today.

Run your car off the side of the road
Get stuck in a ditch way out in the middle of nowhere
Or get yourself in a bind lose the shirt off your back Need a floor, need a couch, need a bus fare
This is where the rubber meets the road
This is where the cream is gonna rise
This is what you really didn't know
This is where the truth don't lie

{Chorus}
You find out who your friends are
Somebody's gonna drop everything
Run out and crank up their car
Hit the gas, get there fast
Never stop to think 'what's in it for me?' or 'it's way too far'
They just show on up with their big old heart
You find out who your friends are

Everybody wants to slap your backwants to shake your handwhen you're up on top of that mountain
But let one of those rocks give way then you slide back down look up and see who's around then
This ain't where the road comes to an end
This ain't where the bandwagon stops
This is just one of those times when
A lot of folks jump off

{Chorus}

When the water's high
When the weather's not so fair
When the well runs dry
Who's gonna be there?

Enough is enough!!

I AM SO READY FOR THIS WINTER SICK SEASON TO BE OVER......



Okay so now that I said it, I want you to know that I mean it...we have all been sick for one time or another for 2 months straight now....and I have had enough. I am tired of snot, and coughing, and vomit, and grumpiness........Julie had the horrible long cold that we all have had and now she has a bad case of bronchitis and is on antibiotics, now it is spreading to Kaitlyn and she is once again sick with a cold and no longer has a voice and her raw nose was just finally starting to heal....please help us!!! On the flip side of all that....Julie had her 5 yr/school check up today and she is doing great and everything is right on track. Now we just have to go back to the urologist next month to make sure her bladder is okay and then we should be set. I cannot believe that I am going to have a kindergartner in a few months.



Also since it was a long weekend this week, I finally got our playroom started and finished. We have a large bonus room upstairs that was not used for much, so we decided to turn it into a playroom. We installed lower handrails for the kids and moved all of the toys upstairs so they can have their own space. It is actually nice. Slowly things are all falling in place. Also on Friday we had snow which made my year and the kids loved it. I just wish that Julie wasn't feeling so crappy that day and could have enjoyed it more. Oh well, we are planning on spending a weekend in Tahoe in a week or two because Julie wants to learn how to ski...so we will see how that will go.