I hate it!

I hate having Lupus...I'm so weird...I can't control anything!!!


Why am I so emotional? I want everything to be my way, but it never is. I am being stubborn and selfish right now & I really don't care. It's nothing huge, but what's wrong with me? I know it is wrong, yet I continue to push until it's MY way. I have a problem, that I definitely know I have, yet I don't I continue to be STUBBORN. How far will this get me? It probably won't last long, but enough to ruin my family's night. I just want to sleep, sleep it off. But I know it won't happen. My family will just push and push. But I will continue to push the other way, until it's my way. What to do? Hmm...I know it can't be this way forever. Oh well, I guess I'll have to either push myself or maybe I'll come to my senses [doubtful].


One thing that "BUGs" me is the fact that I am so random...things go in & out of my head...I was never like this...but as this disease progresses, I get worse. I can talk about one thing, then another...just way off. I never really have a steady stream of thought. As I was once known for my reliablity [strength], I am no longer Ms. Reliable. I think I do remember a time, when my daughter was still young...she turned to me and said "mommy, why can't you remember anymore?" I felt crushed. As if my whole world around me stopped. My little girl, who looked up to me, depended on me, says something that OPEN my eyes. Now, I depend on her. She is twelve years old, she is somewhat a normal girl turning into a teenager, but then she is also a little bit more mature. I think it is because she takes care of me. When she was young, we always limited how much information we would tell her about my disease. Now she knows better. I'm kind of sad to know that my daughter had to grow up so fast because of me & this terrible disease.


Sometimes I wonder...why me? I already know the answer...I know that I won't ever get one...but as a is supposed to be a part of God's big plan. I desperately want the sleep [death] that is described in the bible. I am not suicidal, but I'm tired. I'm tired of being in this body, being constricted to what my body will allow me to do. Why? When I talk about it with family & friends...they feel sad for me and that's not what I wanted. I do not know how to describe the feeling, but what I really want is rest.
The reason I started this that I could vent out feelings of frustration without people judging me.
No one knows how I feel unless they have walked a mile in my shoes. Being a wife, mother & friend...has definitely taken it's toll on me. But that is something I truly enjoy. Now being a daughter, well on the other hand, I would opt out. My mother, well she isn't your normal mother. She left [abadoned] me when I was two years old to pursue medical school. Till this day, I ask her why she didn't take me? I didn't get to live with my mother until I was seven years old. And even then, I was transferred to one family member after another. She worked terrible hours, which meant that I never saw her. I can't say that I didn't have other things...monetary things...that I was never short of. Which she accounts for working so much. But I think I would have rather given up all of those things for time. I've seen many psychiatrists, therapists, etc. & I have been told the same thing over and over again. Until I resolve that part of my life, the animosity that I feel towards my mother will never be resolved. She never says sorry. The way she says sorry, is buying me things or taking me on extravagant trips. Some believe that's enough to heal a wound, but my wounds are deep. I have been told the only stable thing in my life is my husband. Because he has stayed with me through it all, good & bad. Not saying my husband is a saint either, but he has had his moments. But as much as he has to deal with...I'd say he'd qualify. Let's not tell him though. Maybe one day.
Like this european trip that I am going on [well hopefully] next week. My mother has decided to take me with her...and I can never go anywhere with out my daughter, so I pulled her out of school to come with. We make all the arrangements, airlines, hotels, etc. Then my mother pulls this "woest me" thing...saying she didn't think she was going to spend this much money. I want to tell her, then why take us on this trip? She is the one that suggested it? But my daughter has advised me otherwise. She said that I would just make grandma angry. But I have made it clear that I don't need the added stress - because of monetary issues. I finally broke down and asked for the wheelchair assistance. As many people know, Lupus is an invisible disease. If people look @ me, you would never be able to tell that I suffer. I look like an ordinary 30 year old person, who should be living an active lifestyle. But unfortunately, I'm not. I look 30 years old, but I have a body of an 80 year old woman, literally. I have felt on more than one occasion that I am defective [and if I was a store bought item, I should be returned].


I turned 30, what now???

I turned 30 on February 15. It seemed like an ordinary day...little did I know what laid ahead of me. My best friend from high school flew in that afternoon so that we could have dinner together. We went to my favorite restaurant, Bloom in Broomfield. Later that evening, we went to pick up her brother & two cousins from Denver International Airport. Friday, I had to apply for my daughter's passport, expedited, nonetheless. In the morning, we get ready to go to Eldora, but I had to run a couple of errands before turning in our application. We finally get it submitted and went up to Eldora. It was white-out conditions, 10 inches of fresh snow and it continued to snow. I was excited because I have not been able to snowboard for almost two years because of the activity of my Lupus. I was gung ho, went up the bunny slope once with my daughter & friend. The second time up, my daughter & I get off the lift & of course, we fall. We look @ each other & laughed! I strap on my snowboard, as she did & suddenly I didn't feel so good. Next thing you know...I wake up to people around me asking me what my name is...confused...I wasn't sure...& now I was in a building. They said I suffered a seizure while up on the mountain, they cut open my shirt to try to put the iv in & attached several things to me...I believe they did an EKG, they had me on 15 liters of oxygen for about an hour. They tried to intubate me & I started to vomit. I told them that I felt better. Next thing I know, I am being transported down by an ambulance, then to another ambulance down to Boulder Community Hospital. While in the ambulances...they try [yet again] to put an iv in me...everywhere...on both my hands, writsts, arms, etc...I didn't get an iv in until I got to the hospital. I got put on a padded down gurney...I guess if I had anothe seizure it was just there for precaution. I had another EKG & catscan...& all I wanted to do was leave. I signed the papers & jetted out of there. Since they cut open my shirt...I didn't really have I got to wear paper pants, hospital gown & non-slip socks. I would call this my "episode".

Diagnosis as of today

Systemic Lupus Erythematosus (SLE)
Rhuematoid Arthritis (RA)
Raynaud's Phenomenon
Sjogren's Syndrome
Proliferative Glomerulonephritis (Nephritis)
Irritable Bowel Syndrome (IBS)
Anxiety Disorder
Panic Disorder
Epilepsy (?)

My current medications as of today

Cytoxan 1250 mg
Zofran 8 mg
Prednisone 5 mg
Plaquenil 200 mg - 2xday
Cymbalta 60 mg
Zaroxlyn 5 mg
Xanex 1 mg - 6/7xday
Amitryptline 10 mg
Vicodin - as needed
Vicoprofen - as needed
Tramadol - as needed
Ultracet - as needed
Balacet - as needed
Ambien 10 mg - as needed
Ambien CR 20 mg - as needed
Restoril 30 mg - as needed
Benadryl 75 mg
Zyrtec-D - as needed
Allegra - as needed
*well I know I forgot some, as I remember them, I will update my list.
Glycolax [white powdery stuff that I mix in my drink] x 1 day
stool softeners x 4 day
laxatives x 4 day
[Yes, I realize there is a lot of stuff for going bathroom, but until I can cut my stress in half, I still have issues going, it's TERRIBLE].

My appointment with my neurologist this am

I went to see my neurologist today. Of course, while waiting in the waiting room...I was having another episode. I started to see the spots, as if I was about loose consciousness. I took a few candies in a jar & asked for water. My doctor came out to the waiting room to look for me & I heard him calling my name. I had pulled up a chair by the water fountain because I started breaking out in a sweat, feeling faint [again]. I came for this appointment specifically to get clearance to drive again. Of course, I didn't get the clearance. I wanted answers, but I didn't get any. I didn't want anymore testing, yet I am scheduled for two more diagnostic testing. I am leaving the country on the 12th of March, so that means I have one week to get an EEG, MRI & a follow up appointment with my neurologist ALL before I leave. I keep asking for a miracle. Because it will be a LONG week. All my neurologist said was that we are probably going to put me on [yet] another medication for epilepsy. Yes, I am so excited, NOT! But we are going to wait for results before deciding what type of medications I would need to be on. I talked with a fellow lupus group support member & she was telling me how Lupus can mimick epilepsy.