Random pictures from my vacation...

Conversation with Dr. Ginsberg

Dr. Ginsberg finally calls me back and he gently tells me that it isn't the medication that is affecting me & that I need to see Dr. Charney. As I almost cry, I ask him to kill me [literally]. I ask if this is normal? Now I am sweating, first I was chilly? My veins are burning out of control & of course my foot. He said it is related to my Lupus and to NOT stop taking my medication. I said why am I feeling this way? He just said that I have become very depressed and that I need to see Dr. Charney right away. He has instructed me to call Dr. Charney's office and [practically demand] for an appointment before the weekend. I call and of course, the first appointment isn't until the 30th. I tell the receptionist that I personally spoke to Dr. Charney & Dr. Ginsberg and they both wanted me to be seen right away, she puts me into voicemail. I leave a message for Alonda [Dr. Charney's nurse] & I have yet to hear from anyone yet, if I do at all?
Everyone at work, looks at me...like i'm a crazy person [probably because I am]. They all tell me to go home, but I'll probably cry if I go home, I need a job and I am scared that I will get fired for being sick all the time. Plus, if I have to see a doctor, they are all down here by my office. So what is the point? The new attorney here asks me to help her with a stapler, I attempt to help her & she sees my medications on my desk, she makes a comment "that's your medications?" I answered her "yes, plus I have some that go intraveneously", she looked at me awed, and said "you should go home", of course I tell her that I have to probably see my arthritis doctor and he's down here, it's better for me to stay here. She looks at me says "you have arthritis too?" I tell her "yes, RA", she answers "and you are able to work?" Now I am feeling very low. I just look at her and I think she got the hint to not make any more comments before I break down and cry again.

Arvada S.P.O.O.N.S.

Last night was my support group meeting. I had a fellow support group member [well she's more than that...my friend] pick me up from home and take me, plus she took me home after. She's an inspiration. I have always admired her strength.
We had a great turnout for our meeting, lots of people and even a new member [btw-which was a little weird], but I guess we are all weird in our own ways.
I was pretty hungry because I haven't been all that good yesterday, crying at the doctor's office and just the stress alone. So I encouraged my friend to have fish & chips [like I was having]. The service really sucks at this meeting place, actually the meeting place just sucks in general. We had our meeting and the facilitator, plus my friend made baskets for every member of our group [so thoughtful]. We continued to do regular stuff, figuring out fundraising, 9 News Fair, selling Lupus bracelets, garage sales, etc. I didn't feel so good. I had started taking the new drug for my seizures [Keppra], plus I just ate. My head was hurting so bad, but I didn't want to get up to go to the bathroom and miss out on anything. I started to feel really sick & could smell everything in the whole establishment. I finally got up and went to the [gross] bathroom. I had diarrhea [pleasant, huh?], washed my hands, went back to the meeting, then next thing you know...I feel like I am about to pass out again, my head is really hurting now. I get up the second time, as I was walking to the bathroom, I felt it...started running and couldn't quite make it, but vomitted in the sink. Ugh! I thought it was over...and I was quite disgusted to see my dinner regurgitated in front of me...I tried to get it to go down the sink. Next thing you know, I am vomitting again [really feeling bad now]. It is the like the never-ending vomit. Then I wash my hands, try to leave the [gross] bathroom, ran into a stall and had diarrhea [yet again]. I finally make it out of the [gross] bathroom, embarassed, not knowing what to do...I whisper into my friend's ear telling her that I had vomitted and I couldn't clean it up. I felt really terrible. She asks if I am ready to leave, I give her that look like "yes, I am!" We leave, she drive to Starbucks to get a pick me up & graciously gets me a bottle of water, then takes me home. I finally get home...and only my doggies are home. I run upstairs to the bathroom [yet again] calling out for my daughter to help me. No one answers. I call my husband's cell phone, they were at my sister-in-law's place, which is just down the street. They come home and my daughter takes my temperature it is 96.7. I have no idea what that means? I pass out. I wake up this morning in so much pain, my veins are burning, like they are on fire. I cried. My husband wakes up and massages them...they feel a little better, but still hurt considerably. I couldn't find the thermometer, so I assume that was a sign that I needed to go to work. I got ready and my husband put my bag, lunch and everything I needed in my car. I drove to work, barely making it, I know that I am not supposed to drive, but today was just extremely hard for me. I finally get to work [yes, I know] my husband put a plant in my car that I wanted to bring to work and he said "promise, you'll have David get the plant out of the car for you." I said sure. Well, I didn't keep it. I got out of the car and picked up my huge purse, my lunch bag, my cane [oh, did I forget this part?], I had to wrap up my left foot because it hurt so badly & finally used the damn cane to help me around. I think I am totally embarassed to use it, so I try not to. Okay, back to the damn plant, so I grab the plant with my other hand and drag it up to my office. I was not well. I get up there...take a Vicodin, my head wants to explode, but it doesn't. I ate a whole bunch of fruit, had hot chocolate, took all my [damn] pills. I started to have a nose bleed [of course, cause I'm wearing white], then my head is really pounding, so an hour and half later I take a Vicoprofen & I am really wanting to pound in my head now. I finally tell my office manager that I need to lay down and did so for about 15 to 20 minutes. I get back up...I feel terrible. I had already called my neurologist's office twice and left him messages and have yet to hear back from him. Am I just really imagining this? I am starting to feel like I am. I truly want to die. Why do I have to suffer so much? Why can't I get that peace that I truly ask for? My friend from Saipan writes to me via email, concerned, she has been trying to get a hold of me by phone and has been unable to reach me [honestly, I'm just not answering], so she has been writing me emails, asking if I am okay. I keep responding that I need time to reflect. She writes me another email today, asking if it is okay if she comes to visit me in April to just visit with me & I cry again. I write her back and tell her that honestly I can't give her an answer, sorry.

Tuesday, March 20 - Dr. Ginsberg

I had an appointment at lunch to meet with Dr. Ginsberg, as he would call it regarding my "spells". Well, basically I was told that my EEG was abnormal, and I totally lose it. I start crying. I just couldn't take it anymore. He said we are going to start you on Keppra, first at just 500 mg, then we should be up to 1000 mg. Then he said we needed to change the Cymbalta from 60 mg to 90 mg. I was upset. He called my rheumatologist while I sat there and sobbed, they just talked as if I wasn't even there. I finally say, I don't want to take the medications. He looked at me and said what? I repeated myself...no more. Then he looked at me again, and said are you trying to tell me that you are doing yourself in? I said no. And he said that if you are, I am going to admit you right now. I am tired. I want peace and rest with no more pain and suffering. I have always been able to take the bad news...but this time...I felt myself slipping away...I just wanted to die. I literally said it too. As a Christian, I would never commit suicide, now I feel that is questionable. I am always so close to death, but brought back. I feel useless. I have to apply for a "special needs" bus to take me to and from places because of my seizures, I am not to drive. I hate it. I just want it all to go away. But it won't. It just keeps getting worse and worse. I ended up crying majority of the evening, taking so many drugs to make sure I just pass the hell out. Even my husband and I get into an altercation...he was like you knew it wasn't going to be easy. What the hell is he talking about? He keeps telling me it is always about me. Well I guess that's true, I can't help that I am stuck with this stupid, debilitating disease. I asked him not to sleep in our bedroom last night because I just couldn't handle anymore. I want everything to just stop right then and there.

Heathrow Airport

We get to the airport in Heathrow, we have five hours before our next plane leaves. Sam & I were going to leave to go to Central London, but with our luck, we decided to just stay in the airport and shop. We buy little and big stuff, here and there. Hiding from both my aunt and my mother. At every place that we buy things, I am to show my boarding pass so they won't charge tax. Well -as I quickly forget, since I was a passenger that needed assistance, they put me and Sam in the "Serenity Room" and ask that we stay there at our leisure and someone will take us [when it was time] to our next boarding gate. In the midst of the shopping frendzie and being hungry...I realize that I can't find my boarding pass. What the heck? I went back to all the stores and no one has it. I end up at the "customer service" desk [again] to ask for another boarding pass. As they print it out...I hear someone calling my name, it's my aunt! OMG! I left Sam at the restaurant & just ordered food while I ran around trying to find my damn boarding pass. I tell auntie that we are at the restaurant and she comes over and talks up a storm. I tell her about the fight I had with my mother and she just said why do you accept her invitation to go places, when you obviously don't get along? I just tell her I don't know. She finally goes away because Sam and I convince her that my mom is probably looking for her and she is planning on sitting with her and not with us. We both run away...to the "Serenity Room" only to find out that they have been holding my boarding pass, ha! They transport us all the way to the other side of the airport for our flight. We get put in a special seating area and get boarded first with the crew. As we wait until they clear the airplane, we were freezing! We finally get on the plane and make the long journey home. We both were clearly ready to go home. While on our way back to Denver, an hour to go...my mom comes up to us and she says sorry, she didn't mean to upset me & finally realized the last time she used the credit card was in Venice. It was surreal [both my daughter and I have never heard her say sorry, ever.] Then, next thing, my aunt starts to look for us, as we hide behind our brochures [yes, we are terrible]. She finally finds us and wants me to basically call her husband because she thinks that we are flying in an hour early. That was not the case...we were late. Sam & I were told to wait for assistance to get off the plane. Someone finally came for us after everyone de-boarded the plane. We were taken by the buggie to the customs & I was transferred into a wheelchair. We were given priority with the crew members to clear customs. Even though we got through faster, well our luggage, that was a different story. One luggage came out right away, the other, well was one of the last luggages to come out. I didn't have the arm strength to wheel myself out...and she couldn't push the luggages out and wheel me too. They wouldn't let my husband past through, so we were kind of stuck. Someone one finally helped us...at least to the door. I was so happy to see my husband. I was just happy to be home.