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 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 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 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 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 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 least to the door. I was so happy to see my husband. I was just happy to be home.


Finally, we make it to Paris. I had to call Airport Connections right when we landed to make sure they were still going to be able to pick us up and drop us off at our hotel. I called the hotel and they held our reservation, just charged us for the night we didn't quite make. This time, we were definitely exhausted. It is now Saturday, the only shopping day left in Paris before we depart on Monday. Sunday, is a mandatory "closed" day. Well with the exceptions of certain shops on Champs Elysses. Sam & I drag ourselves out there and try to get as much shopping done...well it was definitely a challenge because we didn't know quite where we were this time...last time we went to Paris, we were there for seven days, of course, in a different location. But in the end, we find it, did majority of the shopping, finally make it back to the hotel. My mom was gone. I guess she decided to get up after a while and go shopping too. Soon after, my mom shows up back at the hotel. She's hungry and says we should go out and eat dinner. My daughter was completely not in the mood to do any more walking, even if it meant walking across the street. I asked for room service, but apparently that is only on certain ocassions, not all the time?? I didn't quite understand that part of it. My mother and I venture out to get dinner. We eat at a lovely Restaurant called Brasserie [?]. I have no idea what it means, but the food was yummy. I get take out for Sam. We get back to the hotel & started knocking, but no one answers. I start banging on the door, yelling Sam are you there? I know she is there because she was so tired. My mother starts yelling at me for leaving her [as if I was the only one that left her], but she was genuinely tired. My mother goes to the front desk to get an extra key, well Sam locks the top lock so you can't completely open the door & I continue to knock and knock, calling her...she finally wakes up...crying, mommy, my leg. I knew exactly what she meant, she was cramping up and she couldn't move. I kept telling her that I couldn't help her unless she unlocked the door. She finally got to the door and I had to help her. I draw her a hot bath...she looked I gave her a neb treatment [she has asthma] & she fell asleep and was biting down on the mouth piece. I attempt to carry her to the bathroom [God knows where the hell my mother is, but she isn't helping] & give her a hot bath & she finally feels better. She eats the food I brought back & ends up passing out on her bed with wet hair. All my mother wants to do is shop, so I end up going with her [again] to shop close by...just a cheap stores. I end up making her purchase me clothing as well [cause I've got to be there with her, might as well, right?] We come back to the hotel and my mother desperately wants to see Versailles. We end up booking a trip to Versailles for 1:30 in the afternoon on Sunday. I was so tired. I slept & slept....and finally got up to go to Versailles. We go on this tour...a driver picks up me, my daughter & my mother and two other guests from our hotel. We travel to one more hotel to pick up two other guests. We make the 40 minute drive, it's about 35 km away from the city. The tour guide gives us the story of Versailles and how it is possibly the biggest palace. It has something like 1000 plus rooms [yes, I was listening very tentatively]. Our luck, we only get to see 25 [thank God]. Lots of tourists, cobblestones, beautiful tapestry, ornate, everything you can think of a grand palace. The gardens were breath taking. It was a cold & windy day. All I wanted to do was just hurdle up by a fireplace, but no...I had the driver drop us off at Champ Elysses because I'm a nut ball. We do little bit of shopping and eat dinner. Finally returning to the hotel to start the endless packing of stuff. A car will come for us at 5:00 a.m., so I guess we'd better be done before we go to bed. The next morning, the driver was prompt. We stop at one other hotel to pick up another couple going to Charles de Gaulle airport. The kiosks were not working, so there were LONG lines, everywhere. I needed to get my VAT stamped so I could receive a tax refund for my purchases. I tell my mom to just go ahead and Sam & I look for the VAT office. We find the VAT office and they tell me that they need my boarding pass, well I haven't checked in because VAT asks that they are able to see the merchandise. I go back and check in thru a kiosk...then my mother realizes that she can't find one of her credit cards and what does she do? She blames me. She can't find her pounds, she thinks I stole it. She can't find her euros, she thinks I stole it. I finally lose it when she starts to accuse my daughter of taking it. I start yelling at her & I just told her to cancel the damn credit card and the others I have no idea...but I assume she dropped it. She has five different places where she hides her money [just like my grandma, who had dimentia]. Then I really tell her off, she was like I never lose anything...and I was like, oh yeah, just like when you lost your passport in California? She didn't like that comment and frowned. I just separated from her & Sam & I deal with our own flight. I get to the check-in desk and check-in my luggage, the agent asks what is my destination? I tell her Denver. She didn't quite understand because it just said Heathrow [London], well we had bought the tickets seperately, but it is both through the same airline, so they just put tags on our bags so that we wouldn't need to pick them up at Heathrow [London] & they would directly go through to Denver. Well as my mother comes over to our area and finds out that we have done so, she is upset because they didn't do that with her luggage. I'm not sure what she did when she checked in, but that's it...she depends on everyone else to help her and if you don't, then you are out to get her. I didn't want the situation to escalate, so I tell her, to get a separate seat from London to Denver. When we got on the plane from Paris to London, I had Sam sit inbetween us because I was literally going to strangle her.


We fly to Venice on Ryanair. I guess it is a small european company that flies all over the place out there. They were very strict as to how much we were allowed to check in and bring onto the plane. It was a full flight. Then there is an hour of a time change, so that just made you feel weird altogether. But the flight was only 2 hours long. We get to Venice, tried to figure out how to get from the airport to the island? Well we followed the long lines...and paid 9 euros for a roundtrip ticket on a bus. It was a full bus too. After traveling for an hour and a half on a bus to the island, we had to find our hotel. Well that was a little bit of a challenge, considering we didn't speak Italian. I took the confirmation page and just showed the address to people trying to see where we needed to go...there is a water taxi, its just like the bus, but because there was no land, just stopped at every few blocks. I finally got an answer as to where to get off to find our hotel. We stayed at Sant' elena hotel. It was a beautiful hotel. I was soooo hungry. After we drop off our stuff, we are on our way to find food. Well the only trouble is...there is a lot of walking and I was pretty much pushing myself to walk. We found a really nice Italian restaurant that had a view of the water...the sun was setting, it was beautiful. We had dinner, which was really good, by the way. We start walking back to the hotel, but then decide we should just take the general water taxi back because that's a far walk for all of us. As we ride on the water taxi back, almost at our stop, I wasn't feeling so well. I don't remember what happened next, but I found myself at the hotel with my mother [literally] screaming at me "wake up, Melissa!" My daughter had called my neurologist in the US and spoke with him personally. Apparently, they were instructed to admit me into the local hospital [whereever that may be?]. I tell them both that I am okay and it is not necessary. Later, my neurologist asks me, why didn't your mom call instead of your twelve year old daughter? I told him because my mom didn't know what to do in an emergency and my daughter is so mature, that she knew exactly what to do. The next morning...we didn't really have much time...we made our way to Murano island. The two things I wanted to do in Venice was ride on a gondola and see Murano island and buy glass [yes, I am a retard], but hey, I don't really want to drag my body all over the place. I got to do at least one - go to Murano Island and buy glass, it was beautiful.
Next, our crazy way back to the airport and whatever else that happens next. We get to the main area where our bus had dropped us off...well...apparently, there isn't a bus because of some reason...people were waiting all over the place, we were all from different countries and none of us could understand each other. Finally, I just asked the taxi how much it would cost to get us to the airport by 2:45. I was told it was about 75 euros, which equates to 100 usd. We take the taxi to make our flight. We check in, stand in a LONG line and wait. Wait and wait again, finally boarding the plane and making it back to Stansted [London]. We take a bus from Stansted to Heathrow [which was really late because of traffic]. We sit outside waiting for the bus, it suddenly became very cold. So cold, that I finally had to go indoors because my Raynaud's was just painful. Finally a bus comes, but it isn't our bus, but we take it anyway because our bus is just stuck in traffic. It takes us to Heathrow, but the main terminal, we need terminal 4, which is 30 or 40 minutes away. The bus drivers had to change, anxiously waiting, we finally get one & he drops us off. We get to the ticket counter....lots of people for some reason. They print off our boarding passes and our luggage stickers. As she notes that I need wheelchair assistance, she tears up my tickets in front of my face and tells me that she has given up my seats. What??? Apparently, there was a fire in Waterloo and they have canceled the Eurostar [which is the other alternative to get from London to Paris], so everyone [I mean everyone] was diverted to the airport. All on British Airways or Air France. We were flying British Airways. I went over to the customer service desk and was the last flight out, and why the hell did she have to do that? I would've limped my ass to the gate. The lady at the British Airways "customer service" desk told me that I needed to make a claim with "customer relations". I looked at her with a bewildered look, where am I? She had to clarify it again that this is "customer service" not "customer relations". I call my travel insurance, trying to book a hotel close to the airport because [apparently] all flights are over booked and if you want to try to get on the first flight out of London you have to be at the terminal at 5:00 a.m. We called ALL hotels, expensive to cheap, but it couldn't be more than five miles away or else it was just useless. They were all fully booked. My luck, right? We end up sleeping @ the airport, with many others. We were able to get on the first flight, but they were offering cash 175 euros if you would wait for the next flight which is an hour later that same day, we said "hell NO". Yes, it is good money, about $250 per person, but we were tired, aggrivated & just wanted to get out of there.


My trip to London, umm...where to start? Tired is where I started...we got there, unpacked & was just exhausted. We stayed at a very trendy hotel called the Trafalgar London, which took us forever to get there because of major traffic jams. I had hired a private car to take us, but I think we would have gotten there sooner by taking the subway or something??
My daughter and I were adventurous and wandered around the city by ourselves, taking the buses and subway & doing pretty good. We even found the ghetto mall, haha! We took silly pics that came out on little stickers. We just had fun together.
The next day, we met up with my aunt, who came from Rome. We went shopping. Everything was so expensive because the dollar just sucks! But she was nice enough to buy each my daughter and I, 50 pounds worth of stuff. We didn't get much, but that was pretty cool. That's almost $100 per person.
We leave soon to find an older airport in London to get on our way to Venice, Italy.


Bliss is a constatnt state of mind, undistrubed by gain or loss.

This is from the Yogi Tea brand, called "Green Tea Energy"