Coping

Coping with a chronic disease sucks. People think that because I dont look sick that I am fine. God I wish that were the case. Try to explain what a day in my life is like and people are like yeah right, whatever. It is not that I want sympathy, just a little understanding sometimes. The worst part of this is the fatigue. There is no way to even describe it because you wouldnt believe me. I wasnt a believer when an old boss of mine had Chronic Fatigue...I would think, how can someone be that tired when they lay in bed all day. Let me tell you, from the time that I wake up in the morning, I have about an hour where I am not tired. After that it feels like I havent slept in 3 days, like my legs are lead weights that I am trying to move with each step. The smallest task feels like I am trying to climb mount Everest. Yet I push on because what choice do I have. Then on the days when my Lupus "flares", pain encircles my joints. Mainly my hands, arms, back, and legs. It hurts to drive the car, brush my teeth, take medicine and have to open the bottle to do so. Yet I try. Then on Mondays when I take my really strong medicine, I am flu like sick for 24 hours....sounds like fun huh....not to mention that because all of this goes on during the day, when I try to lay down at night to sleep, I get restless leg syndrome and I have to take a muscle relaxer or it will take me over an hour to fall asleep. So many things trigger my Lupus to make it worse. Sunlight....can make it flare...how fair is that?? There are days that I am so tired of fighting and being tired and in pain, but then I try to think there are people that are worse off then me. So next time you meet someone or have a friend with a chronic illness, even though they may seem fine...ask them if there is anything you can do for them, or just let them know you are there if they need anything....believe me, it would make a world of difference!

33 on Thursday

Wow, on Thursday I will turn 33 years old. How time flies. As I look back upon my life I feel humble to have all that I do. It has been a wild ride along the way, but even those things that were hard and almost killed me have made me a better person today. As I approach this birthday, I have a different respect for things and maybe even a new perspective. Maybe because I have been ill, but with Lupus you never know how long you may have left in life so I am trying to make the best of every day that I do have left knowing that I am lucky to still be around. Life isnt easy but worth the ride. Losing my father when I was just a teenager was one of the hardest things I have ever had to go through to this day. I miss him and think of him every single day.
I was lucky to have found a husband who is just like my daddy was. He is caring, loving, supportive, and understanding(even when I am being selfish and difficult). He is my rock, my support, and my best friend. He has made my life better then I ever imagined and blessed me with 2 wonderful kids, a nice house, nice things, putting up with my many pets...(lol). I tend to get caught up in the drama sometimes of things I dont have that others do(lets face it, I was an only child) and he is always that positive voice to ground me again and I thank him for that. I know that I am truly blessed and "things" do not buy happiness. I have friends who have everything, but not a great marriage or they have problem kids etc....I finally feel in my life like I have it all.
My kids are wonderful with big huge hearts and although they may bicker and argue and stress me out at times, I know it is all a part of them growing up and I embrace every little moment..before I know it they will be all grown up and not wanting to hang out with mom...
Speaking of Mom's I have the best. She is the most unselfish and caring, giving person that anyone could ever meet. She has always been my best friend and my family and I are truley blessed and spolied by all that she does for us. She is strong, stronger then I ever could be and has been through a lot in life but never lets it get her down. She embraces life and it shows.
To my few really close friends I thank you for putting up with all of my weaknessess and sticking by me. You know who you are and you will always be near and dear to my heart.
I am also lucky to have a wonderful set of in-laws. So many people can't stand to be around their in-laws but I can truley say I love mine and I am so lucky to be welcomed into their family.
I don't know what tomorrow will bring, but I do know that I am finally at peace with my life and that I have all I need to be happy. Life is a journey and I am going to sit back and enjoy the ride......lets hope for another 33 great years......!!

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.

My adventures at Goodwill Outlet....

Yes, I did say Goodwill Outlet. I never knew that their was such a place but driving by the other day it sparked my curiosity.....an outlet for Goodwill...what in the world could they have there...stuff that they couldnt almost give away at the regular store? Let me tell you it was an experience. First off everything there is sold by the pound....$1.39 a lb to be exact. It is a large building with tables full of bins....mostly bins of broken stuff and junk. Yes, I mean junk. A trampoline missing the 2 front legs....half of a dirty plastic garbage can missing the top, some glasses, broken toys, half packages of depends diapers. Then you come to the clothes section, if you are willing to dig through piles and piles of misc clothes, blankets, you name it, you may find a deal. The problem is most of these are things that they couldnt sell at Goodwill because they were stained or had holes or were frayed etc. Some are things that just didnt sell. Then there are the things that didnt sell at the store, but are now more expensive at the outlet due to the weight factor. For example, I found a bucket of lincoln logs for my kids that was labled $6.99, now it didnt sell for that price at a regular goodwill store keep in mind, but when I took it up to the cash register at the outlet due to the weight it was now $10, are you kidding me???

Now if you are like me, you are probably thinking do people really buy this stuff? Yes, people had carts overflowing with stuff. The most incredible part is what I noticed while I was waiting for my mom and the girls. There was a large crowd of people(at least 40) in one section of the store by where I was standing. I was thinking what the heck is going on, until I saw an employee wheeling out a large bin of clothes, now by large I mean probably 7 foot long, by 3 feet wide. As he approached with the "new" bin, these people swarmed on him before he could even get the bin in place and locked. Digging through as fast as they could to find the next great thing. Then they would grab what they found and wait for the next bin to come out 5 minutes later and the whole thing would start all over again. I couldnt believe my eyes. These are things that could not go in the other regular stores or just didnt sell, its not like you are going to find a coach pair of shoes or something. It was a mad dash and mob for each new bin that appeared. I coudlnt believe my eyes. Then I found out that there are a bunch of regulars that are there every single day. WOW.

Now on the flipside I am very blessed in life to not have to shop this way. I find it sad that some people can only afford these things that most people do not want. I don't have to shop there but man if you do, I guess it is a whole different world. On that note, I think in a way it is wrong for Goodwill to stoop to this level. They had 99% of this stuff donated to them. I know that they use the money to do good..and from what I heard they do. So why not in this economy and place that we are living, where there are shelters and so many homeless people, dont they in return donate this stuff that doesnt sell or they cant sell in the normal stores to those less fortunate. To me it seems like they are trying to milk every last cent from people on things that they got for free. Something about this seems wrong. I don't know maybe it is just me, what do you think?

Now I have to admit, I did spend $11. I bought a few pieces of clothes for the kids, a few stuffed animals(that we washed in the washing machine right away) and a small toy and case for Julie. It was a whole different world for me and one in which I say that I am not planning on returning to any time soon.

Looks are not everything

Do you ever feel like some things just happen for a reason. Let me tell you why I feel this way right now. We recently decided to add another cat to our household as a working cat, 1st to cure the squirrel issue we have in our attic(since nothing else will) and then to remain outside to hopefully keep them at bay. So after checking out many rescue sites and descriptions, I decided that I wanted an orange female that I found online at our local animal shelter. So while the kids were at grandmas this weekend, I headed down to the local shelter set on picking up our new working kitty and it was great since I have wanted an orange cat for a long time. It was all fitting into place. As I walked into animal control and I was greeted by many cats for adoption. I quickly located the orange girl and headed to her cage hoping she would be sweet and I would be taking her home with me. So I opened her cage and yes she was a very sweet girl. I looked around at the other cats and then the cat that was in the cage below her caught my eye. Sitting below was a large black cat...nothing fancy and a male. I was there for a female and what I thought was an orange one. Something told me to check him out, so I sat on the floor and opened the door and out walked this large longhaired black cat with gold eyes. He wanted attention and was very sweet, he then proceeded to plop down in my lap and when I stopped petting him, he reached his hand out to let me know he would like more. I was still set on the orange one at this time. I ended up sitting on the floor with the black one for about 30 minutes and then put him back and locked up his cage. I then went back to the orange girl, but I knew in my mind at that time that this would not be the one that I would be taking home.

Up to the desk I went and before I knew it I was filling out papers for a black cat named Nim. I then learned that he had been there for 2 1/2 months after being found as a stray. That is a long time. Also statistics show that black animals are the least adopted and most euthanized in shelters as most people pass them up. Before I knew it, I was on my way home with my new "Black Male Cat".....

Well let me tell you, within the night the squirrel was gone. We moved the cat to my bedroom so he can get used to us before he is sent outside(that way he wont run away). Let me tell you, he is the most loving cat ever. I think he knows that he was truly rescued. He is great with the kids and loves to be petted. He will make a great addition to the household and I think will be doing a great job to keep the rodents away. Who knows how long he had left before his number was up. For those of you who are not animal people, spring is kitten season and shelters will be overrun with cute kittens everywhere. At that point, cats like Nim who have been there for awhile and not adopted find that there number is up. What a loss if that would have been his fate. I know that we can't save them all, but something was in the cards for this one to make sure that he was saved before suffering a much worse fate.

32 years ago today!!

32 years ago today I came into this world and wow what a wild ride it has been. Never in my wildest dreams did I think that I would be where I am today. My best friend stopped by a few weeks ago and we were talking about life and all we have been through. Can you believe that we have been best friends for 20 years...wow. The one thing that always shines with us, is that no matter how long we have been apart, it is like we havent missed a day when we get back together. I think that this birthday was one of the best, due to the fact that even those that I was sure of would not call to mention my birthday did and what a wonderful surprise that was. I am blessed with a wonderful husband, 2 beautiful girls, great family, and a few really close friends. It is days like today that I need to look back on and see how truly blessed I am to be surrounded by people who love me.

What I learned in 2010 and what I have planned for 2011

Well here we are again, the start of another year. So before I get to all those resolutions and such, I want to touch on a few key points from 2010.
1. It is only fun until someone gets hurt, and someone always will get hurt.
2. Don't turn your back to the waves and ocean even if you think they are small and never swim without a lifeguard.
3. I have the best husband and kids in the world and my mom is pretty great too..
4. Even though the Dr says that it is okay to use cortizone cream in the nether regions, dont use the spray that provides instant cooling relief.(Unless you really need to start a fire)
5. Time goes by way to fast.
6. A lot of people are only your friends when it is convienent for them.
7. My knee will never again be in the same place.

Okay so now on to 2011. I know we all make these resolutions and never stick to it so I am going to check back every 3 months and update everyone on the progress.

1. I am going to be a better person
2. I am going to love myself
3. I am going to try and spend less money.
4. I am going to try to forgive my imperfections.
5. I am going to live and love like it is the last day.

HAPPY 2011 EVERYONE>>>>> May it be filled with happiness and harmony!