Wednesday, May 30, 2012

Can not concentrate for the life of me

All I seem to do is jump from one thing to another.Not sure why. Frustrating as all hell.  I wanted to update here, I am in the middle of correcting a letter I need to send and I need to make some phone calls and do a little organizing. I can't decide what to do first, so instead I bounce around and get none of it down. Time to buckle down and get some stuff done. Maybe by the end of today, I can say I have accomplished something other than errands outside the house.

So what has the Cummings and Nicholson clan been up to for the last week or so? Seems like everything and nothing all at the same time. We have been keeping busy, but not much to show for it.  That is frustrating to me, but it's called life I suppose.

I left off last Saturday. On Sunday, I took Ping to Harvard for a Daisy picnic. We had a nice time. I picked up Ping's friend and fellow Daisy Molly in Worcester and then the three of us headed off to a camp where Girl Scouts were invited for a few hours. We met the rest of the troop, had a hamburger and chips and then went to make bubbles.  Some field games followed and then s'mores and a sing along followed! We had a nice time and it was gorgeous out.  I then drove Molly home and Shayla and I headed home.  The rest of the day was spent doing a few things around the house, baths, books and bed.

On Monday, I had breakfast with a good friend of mine.  I didn't like breakfast at all as they messed up the order something terribly. However, I didn't care. I was there to chat with a friend and that is all that was important. It was rushed, but it was good to see her regardless. The rest of the day was spent doing a little organizing around the house. There is so much to clean, organize, ditch and Freecycle.  That evening Ping didn't have Daisies, but Bill went to the town meeting because he was being recognized as being on the fire department for 15 years. So I read to the kids and put them to bed.

On Tuesday, I volunteered at the front desk at school. I then headed to Brighams to meet with the doctor and dietician that oversees my TPN. It was a quick meeting. My Albumin has dipped from 3.2 to 2.9 and they thought I had a little third spacing going on. I could not agree more.  My legs are full of fluid again.  I headed home so that I could pick up Shayla from school at 3:00 pm. She and I then drove in the pouring rain over to the Sterling Animal Shelter to meet her fellow Daisies. We were there to donate recycled newspapers and to have a tour. That went well. We then went home and had dinner, read books and went to bed. During the day, Bill was here for the men who came to install the new TV system.  It's a nice looking TV.  I have yet to be in that room and it's been over a week since we have had it. Just no time.  Anyway, it was nice that he was home so that the men could be here.

Wednesday was Manny's birthday party at the church.  I booked the church basement for Manny's party this year. It was from 4pm-6pm.  I spent most of the day at home doing a few things and getting ready for the party. At 3 pm, I went to the church and got everything ready. Bill grabbed Shayla and then joined me. We hung up a few decorations, put out the coloring packets and the crafts. Filled up the snack bowls and waited for our friends. The cheapest and easiest party ever. I am really done with doing huge and expensive parties. It has grown so out of control. I just can't do it for three kids. So from now on, parties are going to be small and enjoyed by just a few kids at a time. Ping wants to go to Applebees for lunch or dinner for her birthday, so we may just invite a few kids for that.  We shall see.

Manny got some great books. I asked people to forgo gifts and just bring a favorite book if they wanted to bring something. So Manny got some great books, two Toy Story toys, a shirt, an outfit and a Doodlepro.  He was thrilled. He also got a stuffed bear and a stuffed monkey. The kids played musical chairs, we had cake and then we cleaned up and came home for a quick dinner and then bed.

On Thursday, I had another appointment with a Brigham's doctor. This one was my new primary care. She was very nice.  I then went to Waltham to pick up some of my favorite wings that I have not had in years. I then headed on back down the highway to home.  The rest of the night was spent doing some stuff in the house and feeding the kids their dinner.  I was exhausted from driving around all day.

Friday was a great day. I had lunch at a friend's house. I have not seen her in some time, so it was really nice to be able to sit and visit with her and her sons. Her oldest two were away for the weekend. I then headed home and did some cleaning around the house.  That night I went with another friend to a reflexology appointment. It was heaven.  My feet loved it. It was nice to be out even though it was barely over an hour. I then came home as Bill was on call at 10 pm.

On Saturday, we had three sets of plans. One was cancelled and I cancelled the other plans because it was too close to when Bill and I had plans.  Bill and I had dinner out with another couple.  We had an excellent babysitter here for a few hours. We went to Kyoto Japan and had a great time. Lots of laughs. Bill and I shared a dish and we each got a great appetizer.  It was nice to be out with other adults.

On Sunday, the kids went to Sunday School while I showered. I had a baby shower to attend. My friend Maura is due soon. I drove to Norwood for 1pm and proceeded to sit outside in the most gorgeous weather and enjoy Maura opening her gifts. It was a small shower. It was perfect. I actually got a chance to chat with people.  The pollen was gross though. It was all over us.  I then did a few errands on the way home. I was home in time to read the kids a book and tuck them into bed.

Monday was Memorial Day. We got up early and Bill headed off to walk in the first part of the memorial/parade. The three kids and me joined at the second cemetery which is where we always join them. Ping and Daddy marched in the parade and decorated the graves there. I then took Shayla up town and dropped her off with the rest of the Daisies that were marching in the parade through town.  Yamira, Manny and I put our little seats out and sat and waited for the parade to start. Our friend Ashly and her two girls joined us.  After the parade, Daddy went to have a beer at the legion and I took the kids home.  I tried to eat a little something as I was starved.  I must have eaten too fast. I got sick and had to lay down. When Bill came home, he showered and then we headed to Ayi Meri's house for burgers.  We sat in the sun and watched the kids play. We had a great time. Before I knew it, we had to go home for baths. The day went too fast.

On Tuesday, the kids returned to school and I headed out to lunch with my friend Lisa. We met at Wholly Canolli. I had never been there before. The place was freezing cold and so I had to wear a jacket. I looked like a jerk as it was 82 degrees out. It was so bright in there, I had to wear my sunglasses too.  We had a great lunch though. It wasn't long enough by any means, but it was nice to catch up. I will say that I was pretty disgusted as was Lisa with a fellow diner who thought that not wearing shoes into the place was okay. Then she crossed her feet right in front of us. I thought we were both going to vomit. It was disgusting and unsanitary. Should never have been allowed, but not sure anyone saw but us!  I then headed off to Millbury to do a few errands and then home.  At 4:00 pm we had a painter come by and give an estimate.  The rest of the evening was spent having dinner and reading books. I actually sat down fairly early to try and watch TV and I passed out!!!!

Today was a decent day. I had a dentist appointment.  I then did a few errands and picked up Shayla and her friend Hannah from school. I am watching Hannah while her parents do some stuff this week. The girls came home and did some homework and had a snack. They then went for a walk over to the cemetery with Bill to check on the flowers. Hannah just left. It's time to feed the kids and get the backpacks filled for tomorrow. Then I will put them to bed as Bill heads out to the fire department for training.

I hope you had a wonderful Memorial Day weekend and a great week ahead. It's a short week!  Before we know it, the kids will be out of school!!!!

Mama Out!!!!!

Daisies in Harvard

Sterling Animal Shelter

Maura and Patrick.

Saturday, May 19, 2012

I am here updating so I don't have to do other things!

I have to go and match up every receipt to my credit card bill, but I so don't want to do that.  I know some may think that it is odd that I do it. However, it makes me keep track of what I am doing and if I have any bad charges, I pick up on it immediately. My mom always did it and taught me to do it.  So I do it faithfully every single month. I hate it though. It is a time sucker.  Oh well, it is what it is.

So it's been a week since I stopped in last. It's been a really great week though. Busy to say the least. Not even sure why it's been so busy. I can't seem to catch up with everything I want to do. I wanted to clean the closets where the toys are. While I was away, the kids got creative with where things belong.  I wanted to also go through some stuff in cabinets as stuff is spilling over.  Fairly easy tasks, but time consuming ones at best. 

I am so bloated tonight I am seriously miserable. I swear that having out my gallbladder was a terrible mistake.  I have never been so bloated in my life. It's very, very uncomfortable.  I can't help but wonder if this will be fixed with reversing my surgery. I have a feeling it will not be and yet I hope it is.  I am sick of popping Maalox and taking Gas X and Mylanta. Sick of it.  

Monday morning started off with appointments in the morning. I had a 9:30 am at the house and a 10:00 am. I also had lunch plans, but they got cancelled. I spent most of the afternoon working on some health insurance stuff.  Some old and some new.  Had to find a new plan as we are no longer covered by Cobra.  Bill brought Ping to Daisies at the Oakdale Nursing home at 3:30.  She usually goes at night at a church, but they were doing something special there.  She had a great time as always. After Daisies it was homework, dinner, books and bed. Bill went to the Masons that night. He has not been in some time due to school.

Tuesday was a decent day. After picking up Yamira and Manny, we went to the library for an hour. We then went home and had lunch and they had their naps. We picked up Ping at 3:00 pm and we all went for hair cuts. Bill was the only one that did not need one. The hairdresser found an engorged tick on Yamira's neck. I felt awful about that. She was a little upset, but got over it quickly.  We went home after getting our hair cut. Ping did her homework and then they played a little, watched a little TV, ate dinner and we read books. The kids love when I read to them which is basically every single night. We cuddle up on Manny's bed, put lotion on their faces and they all get tucked in with big hugs and kisses.

On Wednesday I met my friend Audra for lunch at the Boynton. It was so good to see her as it's been quite a while. I then drove her back to her office at WPI and went inside to look. She moved offices since I had seen her last. We sat for a little while longer because there was nobody around.  I then headed out to do a bunch of errands.  Once home I had a host of things to do. I was hoping to get a lot done, but for some reason it seems to always take longer than I expect it to.  I then headed out for dinner with some great moms. I had a great time.  

On Thursday, I met with a bariatric surgeon at Brigham and Womens.  He was pleasant enough. Not a talker. He is not a fan of the surgery I have had. He is not familiar with reversing it. However, he is very comfortable reversing me he said. He is calling my Florida doctor and they are going to chat about what needs to be done and a host of other things I am sure. I have three choices. I can be reversed, converted to an RNY or a long gastric sleeve. Those both are bariatric procedures. That would be done in the hope that I don't gain all my weight back. However, if I go with either procedure, there is no turning back. Right now I can completely reverse my surgery. I am deathly afraid of getting myself into permanent trouble, so it looks like I am going to have the surgery completely reversed and hope for the best. I hope I don't gain all of my weight back. I really don't.  Who is to say I will? Who is to say I won't? I got there once, right?  Sad, very sad.  Waste of two years. Very upsetting. Waste of money. Waste of a trip. Waste of my life for two years feeling so sick.  Anyway, I have a tentative date for surgery.

After the appointment, I came home and did a few things here and then headed out for a pedicure. I have not had one in three or so months! It was desperately needed.  When I got home, I read a book to the kids and tucked them into bed.

On Friday, there was a 1/2 day at school. We picked up Ping at the same time we picked up Yamira and Manny. We then headed out to do a million errands.  Pier One, Puccis, Lowes, therapy and lunch. We went to Ruby Tuesdays for lunch. I had a little gift certificate, so thought we should all go and enjoy. To be honest, they have changed a lot and I am not digging the new menu. Neither is Bill.  He wanted a sandwich and they just don't have any. We ended up getting meals which to us or to me is more of a dinner thing. I do not want to spend $15 or so on a lunch unless it's something I really want. That is more of a dinner entree.  That is just my opinion though. We had a nice time regardless. The two youngest were exhausted though. They didn't get their nap and it showed big time.  We went to order Manny's cake right after lunch and then we headed home. We had been out for hours and the kids couldn't take one more minute. Frankly, with the three of them, Bill and I couldn't take another minute either!!!!  After doing a few things around here, Anita arrived for dinner. We jumped in my car, picked up Ayi Meri and headed out to dinner. There was going to be five of us celebrating birthdays, but two friends had to stay home at the last minute.  We had a nice dinner and quite a few laughs. We headed home around 11:00 pm or so.  I then thought I would watch a little TV. I ended up passing out.  

Today was a great day. The sun was shining and it was warm. We had a new babysitter come. I found her through a friend. She was great. She came and played with Ping for awhile and then met Manny and Yamira when they woke up from their naps.  Bill and I used a gift certificate for afternoon tea. The traffic was horrible, so it took forever to get there and forever to get back. However, it was nice to be out. I looked at Bill and said "Should we chat about something without interruption?" We are never out alone. We didn't really know what to do with each other. So sad.  We just laughed. We are just not used to being alone. When are we ever alone?  

Once home, we got Yamira to try on the rest of her spring and summer clothes. That was a tiresome sport. They then had dinner. I read them "Silverlicious" which we don't have. We have a bunch of Pinkalicious and Goldalicious, but not Silverlisious.  Lotion, hugs, kisses and goodnight.  Since then I have been at my computer catching up on a million things that I need to get caught up on. I am still not done and it's midnight.  I want to still do my credit card bill, but I am seriously so miserable from this bloating. Nothing I have taken is helping it and it's making me miserable. I hate this.  Anyway, off to do the next thing on my list. 

I hope you are enjoying this wonderful sunny weekend. I know we have a few things to do tomorrow and hopefully it will be enjoyable and productive.

Mama Out!!!!!!!!

Mother's Day. Hannah, Ping, Yamira and Manny.

Yamira and Miss Rebecca.

Ping and Hannah.

Ayi Meri and Ayi Anita.

Me and Meri.


Sunday, May 13, 2012

It's been a month since I have checked in here!!!!!

A full month as of tomorrow. That is awful.  Unfortunately, I have been a little under the weather.  I will do the best I can to catch up. There is a new format for Blogger and I am hating this. I hope it works. This is the first time I am trying it.

So the last time I was here it was April 11. So much has happened since. This was an extremely tough week for me. At the beginning of the week I had a cat scan with a barium swallow. The barium went right through me all day long and weakened me something terrible. The next day I had an endoscopy, so I was put under.  That further weakened me.  On Wednesday, I started taking two new prescriptions for my stomach. I told the doctor that I didn't think this was a good idea as I had tried the Ursadiol on two other occasions and I was very sick from it before. However, he said he wanted me to try it. Given that both times I have had it before, I had a gallbladder, I figured I would give it a whirl as I no longer have a gallbladder. So on Wednesday, I started the new prescription. From that day on I got sicker and sicker and weaker and weaker. I was an absolute mess. I wasn't sure if it was due to the barium that knocked me out or the endoscopy.  I could not stand as my legs literally were shaking. I couldn't shower. I tried three times on three days and had to walk out because I nearly passed out. I walked out wet and laid right down on my bed. I couldn't move from my chair. I completely lost my appetite. Every time I tried to eat, I would literally pass out and have to lay on my chair. Every time I moved from the chair, I had to sit back down.  Something was definitely wrong.

On Thursday, I had an appointment here. I could barely concentrate. Bill had school. Ping had tennis and there was open house at school. That was an absolute nightmare for me.  I know that may sound odd, but when you can't stand up straight and think straight, the last place you need to be is an open house with a ton of people, kids and teachers.  I was in an absolute fog. It was horrible. I was so weak all over.  I made it through though. Put the kids to bed and that was that.

On top of all of the above, I had a cold and had lost my voice. So I was miserable.

On Friday, I had therapy with Yamira. Sadly I was too sick to take her, so Bill took her. I was grateful. I could not get off the chair. Every time I did, I wanted to faint.  I couldn't stop shaking still too.  That night I had a massage. I thought it would make me feel better. It was great. I love the woman I go too. She is wonderful. However, I couldn't speak to her as my voice was gone. That made things very rough as we usually talk. So I sat there and tried to strain my voice.  Nightmare!

On Saturday, I had a ton of things I wanted to do. Too sick to move from the chair without wanting to faint. So we stayed home and did nothing. I felt guilty and I was depressed as there were quite a few things I wanted to go too.

Same thing on Sunday. Had plans to do something. Too sick to do a thing. Just sat in a chair and slept on and off.  However, I decided to once again look up all the side effects of the drug I was taking.  Well I had ever single symptom. Every single one. Weakness, loss of appetite, exhaustion, dizzyness, etc. I decided to immediately take myself off the medication. I knew it. I knew I never should have been on it. However, when you are begging for help, you have to try what they offer or you look non-compliant!

By Sunday night, I was feeling a tad better. On Monday, we had no plans. I felt awful as it was vacation week and not only had we done nothing all weekend, but now we had nothing to do on Monday!!!!  What a way to start vacation. The guilt was awful. 

On Tuesday, I woke up stronger than I had been.  We were going to go to the JFK Library for a show, but I was still way too sick to endure the ride to Boston. I was crushed as I was looking forward to it.  However, I just could not do it. I was trying very, very hard.  Ping did have a 1:00 pm Daisy event that she and her Dad went too. She was able to help put trout fish into the reservoir. She had a great time. The two youngest had their naps then. When the kids got up, we all headed to the library. Ping took a zumba class that she loved and Manny and Yamira played upstairs while I chatted with my friends Rebecca and Stephanie. I was still very weak, but we got there and it was nice to see them. Sadly my concentration was awful. I was still very shaky too.  After zumba and a little play time for Ping, we headed home. I fed the kids and read them a book before bed.

On Wednesday, I woke up weaker than ever. Everything must have just caught up to me. I think I got too far behind the eight ball to recover.  So we stayed home. I tried hard to get some stuff done around here, but I was an utter failure between being weak, not eating and being shaky all over.

On Thursday I was determined to get out with the girls to a tea I had already paid for. The girls and I headed to Millbury for 1:00 pm.  Bill dropped off Manny at Ayi Meri's on his way to school at 2:30.  I picked Manny up at 3:30 pm. He had a great time at Ayi Meri's. We had a wonderful tea. Well let me say this. We met my friend Kirsten and her two beautiful daughters at tea. I was in a complete fog. The tea was upsetting my belly. I couldn't eat without wanting to throw up. I nearly threw up once. I was shaking all over. Kirsten was concerned about my driving and weakness, but I said I thought I would be okay. She even offered to keep the girls for me, but I said I would be okay.  I could not wait to get Manny and get home as I was just absolutely miserable.  Once home, the kids had dinner and a book and went to bed.  I just cried as I was so miserable. Such a mess. So upsetting.

On Friday, we had no plans either.  I didn't make any. Just as well. I did end up making plans, but not for anything fun. I woke up Friday and was determined to change my situation. I called Brighams and spoke to my GI doctor's fellow. She asked me to come to Brighams to be checked for dehydration. So after I got the kids situated, emails written, bills paid and a host of other things done including Bill running to Walmart, I made my way to Brigham's emergency room. Bill didn't want me to drive, but I didn't want him to drive me. I wanted him to stay home with the kids.  I did not have the energy to do anything before leaving, but I was determined to get a few things done just in case they kept me.  Good thing too. I told Bill I would be okay.  So I made a huge electrolyte drink and jumped in the car with my pocketbook, a bag with a container, two soups, utensils, two People magazines and some stuff that I needed to do if they kept me. Stuff like business calls and such.  I then jumped in the car and slowly made my way to Brigham and Womens.  I got out at the ER and gave my car over to valet. I then tried to carry my pocketbook and bag in with great difficulty. I checked in, collapsed on a chair and just bawled. How awful. In fact, I bawled all the way into Boston. Why? Because I was starving and could smell the food at all the restaurants and I could not feed myself. Because I left my family behind and felt alone. Because I was such a mess.

So I check in and they bring me in the bag instantly. It wasn't long before they determined that I was severely dehydrated.  No wonder why I couldn't stand and I was a space shot!  They offered to hydrate and send me on my way or hydrate and keep me.  However, it was the weekend and nothing much would happen. I knew I could not drive home. I was tired. I could not stop crying either. I said that I was willing to be admitted. Very much not my style, but it needed to be done. I needed help and I needed it badly.  So they admitted me after they got some fluids into me. Then I was wheeled up to the 10th floor and into room 12. I then spent the next 11 days there!  What a whirlwind!!!

On Saturday, Shayla had an archery event with the Daisies, but she did not go. It was too much for Bill to take her and drag the two younger ones as well especially since it wasn't an event the younger two could attend. Sometimes they can and sometimes they can't. So Bill would have had to sit in the car or drive around for a few hours. Wasn't far away, but too far to come home and then turn around to go back.  So I told him to skip it. They also had a birthday party to attend to in the afternoon, but I told him to skip that as well. If he wanted to go he could, but it was a lot to manage given that the house was very disrupted with me not being home. The kids were exhausted and confused by everything.  The kids had a nice day at home.  I sat or rather laid in the hospital. Got to know my roommate who was awesome. Esma is a student in Boston. She was there for a few days. We became the best of friends. She is a love. I miss her.  I don't remember what I did that day. No much as it was a Saturday and nothing happens in the hospital on a Saturday. I tried to eat, but kept getting sick. I tried to nap as I was so dizzy and nauseous.  I didn't get to watch TV and I didn't read because I just felt so awful. I could barely lay there limp!!!!

On Sunday, the kids went to Sunday School and then stayed home for the rest of the day. They had to return to school the next day and I wanted them to have a day of rest. The two youngest needed a good nap and Bill needed to make lunch, get out the snacks and study for his tests that he had coming up that week! Shayla had a birthday party that afternoon, but didn't make it. That is very rare. Especially if we say we are going to attend. I felt awful about that, but it slipped my mind that day. I remembered the day before, but not that Sunday. Just as well as it was in the evening and Bill would have had to bring the younger two and just sit there with them. That would have been torture for the kids and for Bill. However, it's too far to return home and then go back. It isn't worth it.  As for me, I was miserable, so I just napped and tried to eat which was an utter failure.  I just was so out of it still. All I could do was manage talking to the nurses and aids.  I was very much looking forward to Monday when I could actually see doctors, including the one I expected to see in the morning as I was breaking out of my room come hell or high water.

I woke up to pouring rain on Monday. I got out of my hospital bed at 7:00 am and got ready. I was busting out. I was going to an 8:00 am appointment with my mysterious new GI doctor if it killed me. His office is in the building next door to the hospital. I say he is mysterious because I have never met him, but he has met me. When I was under for my endoscopy.  Would have liked to meet him. Anyway, he was supposed to be my new GI doctor going forward, so I called on Wednesday to make an appointment to meet with him and to discuss TPN and more testing. That is when his office tells me he will see me in August. WHAT?  I then told them there had to be a communication issue and begged to see him over and over before August due to how sick I was. After pulling teeth, I got this appointment for Monday and because I swore to myself that he was what I needed to get TPN and whatever else I needed, I could not miss this appointment. At the same time, my dear friend Meg was driving down from NH to go with me. However, it took her three hours to get to the hospital due to the awful rain and the traffic.  Needless to say, I never got to my 8:00 am appointment because when I asked the nurse to disconnect me from my IV, she got the resident doctor to come in and talk to me.  He told me that there was no need for me to leave to see Dr. Thompson, the GI doctor.  He said that Dr. Thompson was aware I was in the hospital and that he would come see me. I kept insisting I was just going to go and make the appointment since I fought so hard for it, but he kept saying that he really couldn't have me leave and that the doctor was aware of all that was going on. So I resigned myself back to bed and waited for Meg to come in.  It was just as well that I didn't go as I had also begged for a swallow test and they finally caved and scheduled one for me.  Before I knew it, I was going downstairs for the test. I was thrilled as I had been begging for one for weeks from two GI doctors now. This is a test my GP and my Florida surgeon wanted me to have. So I kept trying to get it scheduled, but kept having issues. However, now I was about to have it and I was thrilled. Drinking the barium drink was horrendous, but I was willing to strip down to no clothes and hang from my toes if it meant I could have the test. So while Meg made her way to me, they wheeled me down for my test. She called me when she arrived and said she would wait for me in my room.  The test was okay. The barium was horrible, but I made it.  Then I went back to my room.  There I was greeted by my sweet friend who was waiting just as she promised. It was so good to see her. We chatted and then went for a walk for some coffee for her. We then went back to the room for a short time. For some reason, I was fighting to stay awake. It was horrible. So Meg took a short walk to the gift shop while I napped. The last thing I want to do while a friend is there is nap, but that is how sick I had been. So Meg came back a short time later with a cute shirt that says "Life is Good" and an adorable pair of pink fuzzy slippers.  So sweet. First the drive and then this. Never mind the support she has given me over the last three years. A year before surgery and two years after now!!! She is a gem. I am so blessed to have her. 

I am not sure what time it was, but a few doctors came in and Meg got to hear what they had to say. This was great for me. First of all it was another set of ears. Secondly, it was just great having Meg listen to some of what I had been saying to them and what they had been saying back!!!!  Anyway, they said that they thought the swallow test went well. I found that a little shocking. However, that changed in the next day or two.  Then the doctors told me they thought most of my issues stemmed from excess bile in my stomach.  The only and I mean the ONLY thing they could offer me was the Ursodiol!  The stuff that makes me so sick!!!!!  I was very resistant. So they said they would like to give it a try while under their care.  So I said that I would. I knew it was going to be awful and sure enough it proved to be. However, again, I am begging for help here. Meg thought it was a good idea too, but both of us thought it was a dreadful idea as well. There were no good answers at this point! 

We waited for a few more doctors to come in as I was told I would be seeing all sorts of doctors that day. However, Meg and I never saw another one that day. That was disappointing. Needless to say, they say a lot and don't follow through often.  You get used to it.  I encouraged Meg to get on the road as it was getting late and she was exhausted. So I walked her downstairs and then headed back to my room.  It had been a long day. Dreary out too. However, having Meg there was wonderful.

The kids went to school and then went to my sweet friend Rebecca's. If it wasn't for her, I would never have been able to stay in the hospital. She totally stepped up to the plate and offered to do anything she could so that I could stay and get treatment. Bill had school and we needed someone from 2:30 pm-9:30 pm.  So Bill got the kids at 11:00 am and fed them and gave them a short nap. Shayla stayed till 3:00 pm and then took the bus home with Rebecca's daughter.  They supposedly did really well.  Rebecca fed them dinner and my awesome friend Kirsten picked Ping up for Daisies and dropped her off after. Ping loves Daisies.  I can not thank these two enough for their help.  Bill picked them up a little after 9:00 pm and brought them home. They were tired chickens.   

That night I got my first Ursodiol dose.

On Tuesday I was supposed to help out at the school. Sadly I couldn't make it. I was also supposed to bring the kids to a piggy bank craft at the library. We could not attend that either. I felt bad, but they didn't know that I signed them up for it, so at least they were not upset.

I got up in the am and decided to shower.  Well guess what? I had a terrible stomach ache all night long. When I went to stand up, my stomach cramped something terrible. Then I had to run to the bathroom. I had to go to the bathroom maybe six times. I was so very sick again. I then tried to shower and almost passed out. I had to go to the bathroom again. I basically collapsed out of the shower and onto the toilet. Finally I walked out of the bathroom with just a towel halfway around me and asked Esma to please call the nurse as I was about to pass out. The nurse and the aides rushed in. Also a surgeon came in. Really? At that exact time? I am gasping for breath, I feel like I am going to pass out and I am naked.  The nurse helps me get dressed and dried off while the woman surgeon asks me question after question.  You know I just wanted her to go away, but ended up being so thrilled she stayed as she was awesome. She listened. When asked why I was so sick, I told her that they insisted that I try the Ursodiol while under their care. She was appalled. She said literally "fight the power. Why are they pushing this drug on you if it makes you sick." I explained it all to her and then she said "Do not worry about this. Do not take it again. I will talk to them about this. I will put this all in the notes. I will tell them I witnessed how sick you are." She seemed disgusted that this is all they would offer me. I wanted to kiss her. She was fantastic. Even Esma on the way out the door said "Excuse me, but you are awesome and the first doctor to listen to her.:"  It was so sweet. Esma was wonderful. When she cried, I hugged her. When I cried, she hugged me. Two strangers brought together in quite a way! It was a tough day as I was so sick, but I was better by evening.

The kids went to Rebecca's again as Bill had school at 2:30 pm.  They were supposedly pretty well behaved. I felt bad that we had to rely on Rebecca. I was truly so sick and needed to get better though.  I knew they were totally loved though, so that was a huge weight off of my shoulders. My kids love going to Rebecca's house. I don't know how the woman does it with that many kids, but she does it. Can you say amazing. Both she and her husband are wonderful people!!!!

I spent the day in the hospital waiting on doctors. I can't even remember who I saw that day.  However, I do know they were still looking at all of my tests and waiting on more doctors to come see me.  At this point my roommate Esma went home. I was so sad.  However, I was happy for her. I did get a beautiful flower arrangement from Ayi Meri and Uncle Joe and Ayi Christina and her husband and awesome son Tristan. They were gorgeous arrangements and a huge pick me up!

Wednesday the 25th came and there I was in the hospital. It was my birthday. Who wants to be in the hospital on their birthday?  Not me. However, it ended up being a great day.  I got a beautiful tea cup of roses from Rebecca, John and family. They were so pretty.  I also got some answers.That was the best present of all. It would seem that some of the tests showed that I had two connections instead of the one they had expected. It seems like my surgery was somehow perhaps "botched?"  I don't believe it was intentional. I mentioned "Short Bowel Syndrome." They were not sure.  In addition, the Director of Metabolic Services came in and immediately looked at me and said that I needed TPN. Finally! It's not like I wanted TPN. It's that I needed TPN.  So they ordered that for me and also asked for a bariatric surgeon to come and meet me.  So they put in for that. Finally I felt like I was getting somewhere and that people were listening to me! Yay.  So that was a wonderful day in general.  In addition to all of that, I had all my levels restored to normal. I had been given potassium, magnesium, folate, A vitamins and sugar.  All of a sudden, I could eat. Things I have not eaten in over two years. Took me over an hour, but I had an omelet for the first ever in my life. I had a small piece of cheese and ham in it and it was heavenly.  So my eating not only was picking up, but was changing. I kept saying for months, to anyone who would listen, that I swore that my poor eating had to do with my levels. Two weeks after having surgery in November, I could no longer eat. I kept saying that it seemed that having my calcium restored to normal had ticked off something else. However, nobody would believe me. I kept saying this to the doctors, but they kept saying that one thing had nothing to do with the other!  All of a sudden my levels are normal and I can eat?  See, I am not as dumb as I look.  It was so nice to taste food!!!!!

All in all, it was a decent day.

I do not remember much about Thursday except that the TPN orders were given and they started drawing a lot of blood work for that. In addition, I kept waiting for the surgeon to come by. That person never came by. I was told he was out of town. He was at the same exact place that Dr. Peraglie was at!!!!  They were both in Barcelona! Figures!!!!!  I did talk to Flo who urged me not to be converted to an RNY and to talk to Dr. Peraglie before I did anything. I told her that I was in no way going to be converted to a RNY and not to worry.  I just wanted to hear what the surgeon had to say and I would absolutely talk to Dr. Peraglie before doing anything.  I also got a new roommate by the name of Diane. She was awesome.  She and her family are so nice. 

Manny and Yamira went to Ayi Meri's house for the afternoon and Ping went to tennis and then with Rebecca to Hannah's dance lesson.  Ping loved being alone with Hannah and Rebecca.  Unfortunately, the two younger ones were not well behaved at Meri's. They were exhausted, short on naps, long on staying out and missing me. Not a good combination.  Daddy picked them up at 9:00 pm or so and then went to get Shayla at Rebecca's. To say everyone was tired would be an understatement!

On Friday, Bill dropped the kids off and then was going to take Yamira to therapy. He blanked and she never got there. I felt bad, but what can you do.  The three kids were home with Bill all day as he had no school. So the two younger ones got in a good nap.

Sarah and Brad came to visit me. They brought me some tee shirts I asked for as I needed something clean to wear and the Johnny and lounge pants from the hospital were not doing it for me. They stayed for a while. It was great to see them.  So grateful for their efforts to come see me.

Diane went home today.  She did the sweetest thing for me. She had her daughter Lindsay give me a manicure before taking her mom home. I was so blown away by her sweetness and damn my nails looked good for a change!!!! So sad to see her go. However, I got a new roommate by the name of Carol. An older woman with an only daughter. Both of them were peaches. How did I get so lucky with such awesome roommates?

My TPN got started tonight too! Yay.

Saturday came and Bill took the kids to Mason's birthday party at the Acton Children's Museum. They had a phenomenal time. I spent the day trying to get things organized in my mind as to what I had to do. I talked with Carol, and basically sat like a zombie as I was exhausted and didn't get any rest the last few nights. Last night was the worst as the TPN made me go to the bathroom every hour on the hour.  That night, Bill brought in the three kids. It was so great to see them. I had missed them horribly. The visit was nice. I put out a fresh blanket to cover the floor and they sat down and had a picnic of sandwiches and drinks.  They were so tired. It was late. They had a busy day with the party and then coming to see me. They had barely slept all week. Manny and Yamira could not stop crawling all over me and telling me how much they missed me and loved me. Ping missed me as well, but she knew I would be home. Being in the hospital just did a number on the two younger ones. I felt awful about it. Bill loved them and took great care of them.  Rebecca and Meri loved them when they were babysitting. So they were loved and fed. They just were overtired and the routine being upset with me not being home just did them in.  The visit was great, but a little overwhelming for me.  Yamira even said to me "why is your head bobbing Mommy?"  I was tired, not feeling 100% up to par, had not eaten and had learned to just manage my small space and dealing with the doctors and nurses. Now these three come in with their energy and it was just a lot for me. I was so grateful to see them and love them, but it was a lot for me.  After a lot of hugging and kissing and Yamira and Manny folding their arms and refusing to leave with out me, they finally left. It was late and they needed to get home and get to bed.  I spent the rest of the night chatting with my roommate and texting on my phone.

Sunday was a fairly quiet day. I hadn't slept at all, so I was exhausted.  I got a surprise visit from Anita. She came and stayed a few hours and that was wonderful. After she left I had some dinner and forced myself to read my People magazine. I really wanted to get it read, but couldn't get myself to concentrate on it. There are just so many interruptions in the hospital. The kids attended Sunday School and laid low for the day at home. Ping had a birthday party that completely slipped my mind. I remembered. I told Bill. However, it slipped my mind that day. So she didn't go. Felt bad about that.  

On Monday, they said I would probably leave. I didn't believe them in the least. I knew it would take too long to get all the TPN stuff together. They were waiting on insurance approval.  Needless to say, I was there for the day. It was quiet at that point.  I wasn't being seen by anyone which was okay. I had desperately wanted to see the surgeon and had asked to see him many times, but they said I could on an outpatient basis.  So I spent the day reading, texting and keeping my area clean.  I will say that I got a new roommate and frankly, I could not wait to get out of there. The poor thing was a mess. She was also mentally challenged, so she yelled all day and night long. It was horrible.  

The kids had a good day. Bill was able to get out of school a little early and got Ping to Daisies.  Rebecca loved the kids and fed them and took wonderful care of them today.  We are so blessed to have Rebecca and her family in our lives.  If she did not take the kids as much as she had, I would not have been able to stay at the hospital and get the treatment I needed. That is huge. I am healthy in large part because of her sacrifice.  So lucky to have her family, just can't say enough.

On Tuesday. they told me they were releasing me. They finally got approval for my TPN at home.  I got showered and dressed and packed my stuff. I left a little after noon. I came straight home, put some stuff away and went out to get the chickens at Rebecca's house. She had them for the afternoon. She offered to feed them for me. What a blessing. I was tired. I haven't slept since TPN started as I have to go to the ladies room ever hour on the hour.  I didn't sleep due to my roommate in the hospital. I was still very shaky and just drove home. So coming home and going back out a short time after was really ideal for me.  Once home, I read to the kids and popped them into bed. It had been a long day.  I then hit the ground running. I stayed up till 4am going through all of the kids school work for the last 11 days and all of the mail. I also started responding to some of the 3300 emails I had. Overwhelming. I wrote thank you notes and bills.  

On Wednesday, I spent the day basically cleaning up my emails and doing a lot of other paperwork.  Bill was home which was great. We started getting back to a normal routine with naps and bed time at the right time.  I could still see the huge decline in Manny and Yamira. It bothered me terribly. I gave the two of them odd jobs around the house which made them feel really helpful.  That was a huge boost for them, but it would take some time before they would bounce back. Not sure how long, but I knew it would be awhile!

On Thursday I spent the day ferrying the kids to and from school. Shayla had tennis, so I picked her up after that. The younger ones took naps and I continued to work on my mountain of paperwork. Bill had school, so I was on my own.

Friday was a busy day. After Bill dropped the kids off at school, he had to go to Norwood to meet with a nurse to have a TB test read for school.  When he got home, he stayed with Manny while I took Yamira to therapy. It was nice spending quality time with just her.  We then did a few errands and came home so that she and Manny could nap. That night we went out to dinner as a family to Tavern on the Common in Rutland. We had a wonderful time. It was so nice to be out as a family and the kids were thrilled.  After dinner we came home and I read a book and we put the kids to bed.

On Saturday we had a busy day.  Shayla and I had tea at the West Boylston Historical House. We had a lovely time. There were sixteen of us. We learned the etiquette of a handshake, how to sit properly, how to put our napkin on our lap, how to handle our tea cup and a host of other things. We were there for almost two hours. After tea, Ping did a craft and we came home. It was nice to be out. The little ones napped wile we were out.  We spent the rest of the night at home.  

On Sunday, Bill brought the kids to Sunday School. We then headed to Lee, New Hampshire to spend the day with my friend Meg and her husband and friends and family. We had tacos and carrot cake and the kids played. It was a beautiful afternoon and the kids had a ball. I loved visiting with Meg and her brood as did Bill!  We then headed home to get the kids to bed.

On Monday, It was Manny's fourth birthday!!!! I had the nurse come and take my blood work for my TPN.  Bill went to school and I got Ping in the afternoon. We all then went to Daisies. I had to bring Yamira and Manny because Bill was taking an exam. I had to be at Daisies because it was a mom and Daisy event. We had a great time.  My friend Renee has a sweet boy by the name of Drew. He took Yamira and Manny to play and Ping and I painted our flower pots.  We then went home for books and bed. 

On Tuesday, Bill took the kids to school and then took Sasha for her lion cut at Petco.  I picked up Manny and Yamira from school and met Ashly and her girls at the library for a play date. My kids didn't deserve to go as they both had horrible days at school. In fact, it was the worst day Yamira has ever had. These two are still so depleted from me being away. We are still getting into the routine again of good naps and me being home.  However, the time away really took it's toll. However, there is no excuse for their bad behavior. Had I not been planning on meeting Ashly, I would not have gone. When I got there, I talked to Yamira, Manny and Sky as she had a bad day too. I told them all that their behavior was unacceptable and that they best get it under control for the next day as well as play at the library really well.  In the afternoon, I got Ping from school and we all stayed home for the rest of the afternoon. Daddy was at school taking some tests and then he went to a small party after.  

Wednesday Bill worked at the station from 6am-6pm.  So I took the kids to school for 8:15 am.  I then ran into my friend Kathleen. We talked for an hour and a half in our cars. It was great to see her.  I then headed home and then back to the school to get Yamira and Manny at 11am.  At 12:30 pm I had a cranial sacral appointment at my house with Pam. That went well.  At 3:00 pm, the three of us jumped in the car, picked up Ping and headed to One Stop Fun.  The kids had a ball. It was very loud in there. Reading was difficult. I could not concentrate at all. I tried to make some important business calls, but it was so loud and there were some very, very obnoxious moms and kids there.  The worst part is that the place was filthy and there was ketchup in some of the tunnels where the kids play and it was all over the bathrooms too. Disgusting. I will not return.  Germs is one thing. It's a kids place. I won't deal with filth though. The kids had ketchup on them. I thought I was going to throw up. I was so disgusted!!!!  Anyway, we headed home for dinner, books and bed. Bill came home and didn't go to training at the fire department as he was exhausted, so Manny finally got to open his gifts. What a good kid for being willing to wait till we could all sit down together.  Loved his stuff.

On Thursday, I had a lovely lunch at the Wexford House with my friend Marghrit. It went too fast. It was so great to see her though. I had a great time.  That afternoon I got a ton of phone calls and computer work done. At 6:30 pm, I headed out for a massage with my favorite lady Molly.  I was home by 8:30 pm. The kids were all tucked in bed. So I just did some stuff at the computer.  

Friday was supposed to bring a doctors appointment, but it was cancelled. So at the last minute last night, I asked my friend Kathleen to lunch. So we met at noon at Special Teas in Northboro. We had a great time catching up on life.  The rest of the afternoon was spent making phone calls and working at the computer. I am still trying desperately to catch up here. I have a few important things brewing and so I have been working on those. That night we had dinner at Ethan's in Jefferson with Meri, Joe and their kids. It was great to see them. We had a lovely time.  

Saturday was very busy.  We got up and I took the two girls to a Mother/Daughter tea at the Bethlehem church in town. I have never been there before. I saw Stephanie with her kids as she was the organizer of the tea. I sat with Rebecca and Hannah. We all had a great time having tea and tea sandwiches.  I then took Ping at 1:30 pm to a birthday party and then Yamira and I went home. Yamira and Manny had a great nap and then the kids all went out to play around 5:00 pm. Ping had a wonderful time at the birthday party.  I had a Tastefully Simple party at 7:00 pm.  So I got ready and headed out to that. DISASTER. The party sucked. I am done doing this. Waste of my time.  

I was contacted by this young lady Jennifer a few weeks ago. We booked for last night. I could tell when we spoke that she was quiet young. At least she seemed it. Things are not always as they seem though. She told me she was once a consultant. So I did some host coaching with her, but I knew that she knew what the food was about, what the party was about, how important it is to get guests and good guests, etc. 

I get to her apartment and she and her girlfriends are all drinking and singing loudly. Okay, no problem. She takes the stuff out of the fridge for me, goes back to the living room and proceeds to visit. Now she should enjoy her guests, but she is the host and should be somewhat helpful to me? So I had to cut all the bread, roll the cheese balls and do a host of other things. Not for nothing, but she just sat and sang and sat and sang. Okay, well everyone is different. 

I could tell when I saw her friends that I was in trouble. However, I have been pleasantly surprised before, so I just decided to go with it. They were in college. They didn’t even bother turning down the music for me. The six women loved the food. In fact, a lot of them were really piggy about it and so I figured well maybe they will at least buy some stuff. Then one girl and I mean girl because she was young, came in 45 minutes late. Said she loved the stuff. Had it before. Proceeded to rip plates of food off the table and put it on her lap. She ordered NOTHING. 

Out of 6 girls, 2 ordered less than $100. The hostess ordered nothing. That is not uncommon, but given that two ordered, I would have thought she would feel a little obligated. Again, she was a consultant at some point. 

They all sat there singing and eating while I sat in the kitchen waiting on them. Finally I said to them very kindly “if anyone has any orders, I am going to go ahead and do them now so that you ladies can enjoy your evening without me hanging around.” I mean come on now!!!! So rude!

At one point they all went out to smoke and left me there in the kitchen. I finally said out the window, “Any other orders ladies?” Four turned to me and said “nope.”
I was bullshit. I didn’t say anything. I just packed up my stuff. I asked Jennifer to come in for a moment to say goodbye and I encouraged outside orders. What was I to say? What I wanted to say was that this was a waste of my time and she should have known a little better for inviting free loaders. Her friend Amanda who is graduating from college this week was one of the ones that bought. She is the one that wants a party and she is having it at Jennifer’s house. I booked it, but I can’t imagine that I will do it. I am too busy and have had too many other priorities to bother with this type of bullshit. Know what I mean? Not worth the gas. Sorry if that sounds awful. 

I stopped to get a sub for Bill and something for me at a small sub shop in Clinton. As I am sitting there, I recognize a gentleman from the tea in the afternoon. Before I know it, I am sitting there talking up a storm with him, his wife and seven year old daughter. We traded emails and numbers and we are going to arrange to play at the playground.  How wonderful is that? A new friend for me and my kids hopefully?  They seem like such a nice couple and their daughter is adorable.  

I spent the rest of the night having a little bite to eat and watching a wonderful movie that I got from the library. I kept passing out, but then I would wake up and watch it. Another night I slept on my chair. I have been to bed once in two weeks. What is my problem?

Now it is Sunday and the day has yet to get really going. The kids all went to Sunday School and had a great time. Later on we are going to a friends and I am very much looking forward to it. It's Mother's Day and it's supposed to be nearly 80 degrees. Hope it is a wonderful day. Looking forward to it.  

 Finally I think I have caught up here. Thanks for hanging in there with me.  Off to post some photos!

Mama Out!!!!!!!! 

Art at school open house.
Yamira at St. Vincents with Mommy.
Ready for tea at Asa Waters Mansion.

Molly, Phoebe, Yamira and Ping at tea.
Heading to tea at the West Boylston Historical House.
Me and Meg.
Manny's birthday gifts.
Meri and me at dinner.
Hannah and Ping at tea at the Bethlehem Church.