Heck, Where Have I Been?

I can't believe how long ago my last post was updated...I was having a somewhat good day until I did the un-mentionable...I went into a store with very cute clothes, I thought to myself...it has been a while since I've been in a store to shop. I've been shopping online for my needs bc I don't get out very much and that's what used to exhilarate me. I found some cute stuff on sale and some not...I kind of was thinking of skipping the "Dressing Room" part, but in these small, trendy stores...their returns aren't so easily done. So I went into the dressing room and did it. I couldn't believe how big my mid section was!! I wanted to scream and just jump off the second floor of the mall. Here I am with an xs sweater and one medium...they fit, but too short, I need one to go over my belly, ugh. I was determined! So I picked up the highest sizes I could find...generally I would put on a size 9 and that would be okay. Geez, I couldn't find anything over size 12, but I took them into the "Dressing Room". To my demise, every size did not fit! I should just shop in maternity (how embarrassing). The newest thing I've been doing has been drinking lemonade at Starbucks, I thought to myself how bad can it be? I drink juice all the time!! Of course, I've been drinking for awhile and became a "Gold" member on the Starbucks Rewards, system. Nowadays, almost everyday, I go through the drive through, by my house and I used to order a grande size (which is their medium), but now I've bumped myself up to the Venti size(which is their large). I'm sure this Starbuck run is not helping in the accumulation of fat. I've got an appointment today with my physical therapist and I believe that I have decided what I want to do! I want to work on my mid-section (trunk) of my body. I would rather have lipo or something...but can't afford it. I don't know what the outcome will be. Nothing, and I give up again? I see my teenage daughter (she looks like me when I was 18) but she just had me buy her two caramel apples: one with M&M's and the other with peanuts! She's an extra-small or size 0! That used to be me, even when I was diagnosed, I just kept hacking at my body like a crazy person. I finally gave up and just dealt with what I have and it only gets worse. My husband says it's me that doesn't want to have relations (SEX), but I believe it to be from my body. Being used to size 4, forever...now I'm somewhere in a double digit category?? I let everything go. I have been dealing with a lot of new symptoms of my lupus and I just let it all go...the piles seem normal. I was a type A, OCD freak, who couldn't sleep if there was a tiny mess in the house. Now we have maids and my husband, who really tries, but definitely not up to par with what I am accustomed to. I let my clothes in the closet sit in a large pile so that I don't even have to walk in. I can only wear so many items and I have a generous amount of clothes from my smaller sizes which I refuse to even look at. It is like I've become the opposite of me? How could that be? Really? I had to give in that my body can only do so much and I don't get as sick as I was when I was around 125 pounds. Now, I'm a whopping 162 pounds, bigger than I was when I was pregnant!! I want to roll up into a small ball and just cry. I'm supposed to be making dinner...but I am almost...I won't do anything. I'll have a salad and something, what I usually have but I'm still getting big, bigger and biggest!! I hate my body!! I hate what lupus has done to it and how deformed I am because the fat is allocated to different parts of my body making me look like a weirdo!!!!

Posting re: comment from Roberta Brown

Ms. Roberta Brown, are you wanting to tell me your story that you have Lupus and continue to work until you are 50 years old? I wasn't sure what kind of question you were wanting or was there something I said that you needed more clarification? Please let me know!!

Thanks!!

Living With Lupus: new things, new ideas & finally new treatment...

new things, new ideas & finally new treatment...

Yesterday, what a day!!! Benlysta got approved for treatment in Lupus patients which hasn't happened in over 50 years!! Such an accomplishment which has been all over the Lupus community. I don't even know how to express how I feel about having a drug, finally. I was diagnosed in 1998 and has been dealing with my Lupus till this day. In the past, we had two options: first, you can deny the drugs and just check your body, yearly or even more often. Secondly, you can take the drugs to keep you "comfortable". Being comfortable means that you take the drugs that they think may help the symptoms that are existing at that time and just deal with the complications and reactions from the drugs. You have to make the choice of what is more important...staying around longer to give up another organ. Depending on what type of Lupus you have, some organs are already compromised. As for me, it happened slowly, but definitely. At this moment we are dealing with my liver. This was something that the doctors had already told me would be coming because of all the medications that are given, your liver only can take so much - and after time, it will become one of your "problem" organs.

finally, insurance??...& message to Dorie

This is what it has come to...I have Medicare A & B, seperate drug insurance, supplemental insurance. I think that is about it...but when you add it all up, wheew! I probably should've stayed on my husband's insurance. IDK, things change from day to day. I worry about everything, everyday or at least that's how it seams. My medication can be so pricey that I would stop taking or take less than what I am supposed to take. Everything is so expensive these days...for instance, I stopped taking all of my anti-seizure drugs. I know that it is a bad thing to do. I have to make sure that I stay home all the time. Going out a seizure just can happen. I find that when I am home it is more calm and I make sure to get a lot of rest. Sometimes that's not enough, but I do what I have to. Now I am experiencing dizziness, inability to see what I am reading and then it blurs out to the point where I have to take a second look and have it explained to me more clearly. This is not a good thing, to skip your medication, but I can't say that I don't because I do, financially, it helps me to get through month to month. Unfortunately, I have so many medical bills (which is a lame excuse, but it is life). Food or medicine, that is what it has come down to...and I have a child to care for...I know that my ability to do many things have ceased, but I still try. I definitely pay for it. I can't walk down the block. I can't watch movies. I can't even get down my stairs on certain days. And the others...I can't even get out of bed. But that's life and I have made my own decisions and deal with what I can.


To: Dorie, I'm sorry that you are going thru so much right now. I have fibromyalgia as well. It sounds like you & your husband aren't doing so well. It is hard on our partners to deal with our disabilities. It is the same for me, I depend on my husband for everything. If he wasn't here...I don't know what would have happened?? SSDI can be a long and excruciating matter. It was practically two years in one month! When, I finally got it!! I was really scared before my hearing as well. I didn't know what we would do if I didn't win. I prayed a lot. My husband took off work to come with me to my hearing. Your attorney will come with you. Be prepared to answer questions...in case the Judge asks you directly, which I assume he/she will. Your attorney will prep you for your hearing. Or at least that's what they are supposed to be doing. The only advice I can give you is to be honest. The other advice about your marriage...I would open a seperate account. You can keep it at the same bank or a different one, but make sure it is only in your name. You should do this way before your hearing. If and when you get approved. Then ask for your disability check to come through your bank automatically. Make sure your attorney knows this as well. This is just some preparation for your future. I guess that's all I can really offer to you. Good luck and I wish you the best.