So where have we been and what have we been doing? Well the last time I checked in here it was the 6th of March. I had a wonderful lunch with my friend Christine and took the three kids for hair cuts after school.
On Wednesday, I had a wonderful lunch with a fabulous friend of mine. We checked out a little antique shop and then we had lunch. I had soup. I then proceeded to turn green. Sadly the soup and I were not to see eye to eye. So I had to excuse myself to vomit in the bathroom. I felt miserable and it was worse because I was out. I sat down and we finished talking with no problems. My girlfriend said she could see the immediate change from green to pink again. We then had to leave to go get our girls from school. I took Shayla to the library to get her a library card and to pick out 8 new books to read. Unfortunately, when I picked Shayla up at school, I started to feel sick again. So once we got to the library, I had to lay the car seat down. After 15 minutes I told Ping to jump out of the car and make the mad dash into the library. We dashed in and I ran into the ladies room and threw up yet again. After that we were able to pick out our books and head home. Not the most pleasant way to spend a day. However, I have grown somewhat accustomed to this way of life. Sad, but the truth. The rest of the evening was spent at home. I had to mentally prepare for gallbladder surgery the next day.
Bill dropped the kids off at school in the am and then took me to St. Vincent's Hospital for my gallbladder surgery. Everything went fine. I was blown up with so much gas that I could float to Houston, TX, but what can I say? I was out within a few hours. I felt actually pretty good. Sore, but not exhausted like I expected to be. I usually am so tired from the anesthesia. I spoke to my doctor and he said he found 2-3 stones in my "common bile duct." Only about 8% of the population have stones caught in their duct. He crushed them and checked my bariatric surgery connections and said I was fine and I would probably go on to be problem free from here on out. I wasn't so sure though. Even though I had a sick gallbladder, I have always felt that something chemically changed in me after I had my para thyroid surgery in November. However, I was hopeful. In the afternoon, I was released into Ayi Meri's care. Meri brought me home just as Bill was arriving home. Great timing. The kids went upstairs and got ready for bed while I spoke with Miss Beka who was caring for the little ones. I was a bit angry and sad to find out that Yamira and Manny were really badly behaved for Miss Beka. They did things they would never ever dare do with me. Like screaming in her face. I was really disappointed that they chose to behave poorly. Shayla was supposedly helpful and kind. Thank god for that. I had hoped at this stage of the game, the two youngest would try harder. They didn't. So that really saddened me. I don't want poor Beka to have to deal with monsters while I am away. Such a shame, but kids do behave differently when mom's and dad's are not around. It's not abnormal, that is for sure.
Bill took Beka home and Meri left. I then proceeded to catch up with the mail and email and the like.
On Friday, Bill took the kids to school. I puttered around the house. Worked at the computer doing some Tastefully Simple stuff, signed the kids up for some upcoming stuff, paid bill, did a little light housework and all that jazz. I was sore, but feeling pretty good and wide awake which was still shocking. I wanted to have this one day at home as we had a very busy weekend coming up.
Saturday came and Bill was going to take Manny to a birthday party, but Bill didn't feel well and I couldn't drive yet. So Manny didn't make it. Just as well. Given his behavior from Thursday, he really didn't deserve to go. However, he is three and doesn't quite get that consequence yet? At 2:00 pm, we as a family headed over to Mrs. Rebecca and Mr. John's house for a birthday celebration for their little Noah. We had a nice time. The kids had a blast. Unfortunately, I ended up throwing up after eating a little. So disappointing and disheartening. I know it had only been two days, but was hoping that vomiting was behind me.
We left around 5:00 pm because I had a Tastefully Simple party that I had to work that night. The hostess three weeks ago insisted that I didn't cancel her party. She had at least a guaranteed 30 orders. Well I have been around the block once or twice and I have never seen that many orders ever. That and the fact that after three days of her invites going out, everyone had responded they were coming. That never, ever happens. On top of it all, when I called to check in on her and confirm, she told me she ruined the beer bread. How does one ruin beer bread? She said she put butter in the mix. That is fine, we have all done that once or twice. She tossed it. That is only our biggest seller. Very upsetting. Anyway, Bill packed the car and I headed off to pick up Ayi Meri who sweetly offered to attend this party with me so that I didn't have to carry anything. We arrived at Rose's house and brought everything in. Meri was the biggest help ever. This was one tough crowd. First of all, there were not 30 people, never mind 30 orders. I got a whole big 7 orders. That is nothing. On top of it, the crowd was very loud and pretty disrespectful. They kept talking, they kept eating all of the food, the kept saying they didn't like this or that and kept asking questions very loudly and rudely. Not for nothing, but I was trying to recover from surgery and could have used a little compassion. They complained about the pricing too. A lot of them hit up Meri for many things and to be honest, she handled it with grace. I didn't expect anything else. However, she could have passed them to me. She didn't. She rocked and I love her for everything she did for me that night. We packed up and headed out about two hours after the party. We could not wait to get out of there. I dropped Meri off and headed home.
On Sunday, Shayla had a pottery birthday party to attend. I took her to that in the afternoon. She had a blast. She loves doing pottery now. I had a feeling that would happen. Unfortunately, we had to leave early to get to a Daisy event. We rushed over to the event to find that they started the event a few minutes early and we missed 99% of it. I was a bit miffed. It started at 2:30 pm. They said there would be a circle of hands at 3:00 pm. I didn't care to get there early as I had already responded yes to the birthday party. So I purposely got there at 2:45 pm. Unfortunately, I had to circle the lot a few times for parking. When I walked in, it was nearly 2:55 pm and they already were doing the circle. We jumped in 2 seconds before it ended. Not for nothing, but it was supposed to happen at 3:00 pm. However, we made it. I will say that I spoke to a friend that I ran into there and she completely missed it because they started early. She was really pretty angry about it and I don't blame her. She thought she had time to run home to grab something. She did. If they didn't do it early, she would have been there. It was gratifying to have her annoyed too! What can you do? We all do the best we can. So we left there and headed home. It was a busy day to say the least. The rest of the evening contained dinner, books and bed for the little ones.
On Monday, Bill had the day off because he was on vacation. Bill took the kids to school for me. I can't for the life of me remember what I did that day. I believe I did a few things at home. I know that I didn't sit and watch TV or read like I had told myself I would. In fact, I swear we did errands that day. However, I truly can't remember.
On Tuesday, I worked at the school for two hours. I then went to the library to meet Miss Ashly and the girls. We only had an hour to catch up. Not nearly enough time. I then went home, put the kids in for a nap and caught up on some stuff at the house. After Bill got Shayla and the kids had dinner, we headed out to Pump It Up for our fifth birthday invite there. God I hate that place. I know the kids love it. I see why people have parties there. I hate it though. I think it's because we go all the time. I need some variety. I dropped the kids off with Bill and went to Wegmens for fruit. I also went to Michaels to return something. When I got back, they were all eating pizza. We then headed home.
On Wednesday, Bill dropped off the kids and I had a hair appointment. We then did a bunch of errands together. After getting Manny and Yamira we did a few more errands before heading home for lunch and naps. Bill got Shayla from school in the afternoon and then there was homework, play time and dinner. Bill had the fire department that night, so I put the kids to bed after giving them all a bath. At some point today, I noticed I had a lot of swelling in my legs. It was really bothersome. I decided to give it another day or so before I addressed it. After all, I had just had surgery. I was in fact still throwing up as well. I did not throw up on this day, but I did throw up in the beginning of the week. I still was nauseous and had the interior chills! Very upsetting!
Thursday was a 1/2 a day at school for Shayla. So at 11:15 am, Bill picked them all up. Once home, we gave them lunch and Shayla changed for her big Daisy outing. Mrs. Kirsten and Miss Molly came over to the house and we all piled into my car and headed off to tea at the American Girl Doll store in Natick. We had a great time. Shayla was the only one without a doll. She carried her stuffed dragon. Of course we get there and she has changed her mind and wants a doll. Shocking. The girls got a tour and then they made a craft. We then all sat and had tea. The food wasn't thrilling to any of the girls it seemed. They seemed to like the sweets. However, not as much as I thought they would. We ended up taking home a bunch of sandwiches which I gave to Yamira and Manny. They loved them. I have always wanted to go to the American Girl Store, so I was so happy I could attend with the group. The girls were so beautifully behaved. I was so proud of them. After dinner, we put everyone to bed. It had been a long day.
On Friday morning, I had a Groupon for a mani/pedi that absolutely needed to be used. So I ran off to that for 10:00 am. I decided to have the Shellac done on my nails. I like it. It looks good. The pedicure was great. The mani/pedi girl was a sweetie and did a great job. Unfortunately, I could not get Yamira to therapy as I did not get out in time, so Bill had to take her. It's okay, it's usually me. I like to take her for consistency sake if nothing else. Bill and I met back at the house and stayed in for the rest of the day doing some stuff around the house. He was on school vacation all week. It was so nice to have him home. My legs were a horrendous mess. To the point I didn't think I should be getting a pedi, but I had to use the Groupon as it was expiring. I called my doctor who told the nurse to call in a prescription for Lasix. I told them that it wasn't edema, but she had no desire to listen. I felt very let down. I picked up the prescription and took it. It did nothing to help me. I suspected it would not. Finally that night I sat down and elevated my legs. I had not been elevating them at all, so they were just getting worse and worse. I could barely walk up the stairs. I was so distraught!
On Saturday we had plans to go to Miss Christine's house to have lunch and visit with her and Mason. She prepared an awesome St. Patrick's Day lunch of meatloaf, potatoes and veggies. I am happy to say that I had a little of it all. It was great. The kids did some Easter crafts and then they played and watched a movie. Christine took out all of her card making supplied and I learned how to make a few cards. I had a great time. Unfortunately, I was very teary and emotional. I tried to keep it at bay, but I couldn't help it. Being sick is wearing on me. By the time we left, I could barely put a foot in the car as it was so heavy. I bawled hysterically all the way home. When I got home, I went to my office and called the "on call doctor in surgery." She was very dismissive. She had no desire to discuss my horrendous swelling. She told me she could not diagnose me over the phone and to go to the ER. I knew that going to the ER would be a waste of time. She said I could possibly have a blood clot. I knew I didn't. However, she had no desire to actually hear what I had to share of my experience. So after crying hysterically to Ayi Meri, she jumped in the car and came and got me and took me to St. Vincent's Hospital ER in Worcester. What an absolute nightmare never to be repeated again. I will never, ever go to that hospital again for the ER. I was there till Monday. Poor treatment all around.
Okay, I left off before I went to Florida. I am now back and determined to get caught up if it's the last thing I do today!!!!
So on Sunday and Monday I was in the hospital being treated very poorly. The ultrasound they were supposed to have me do was never scheduled. It finally was done close to 6:00 pm. It could have been done at 8:00 am per the tech that was there all day. The GI consult and swallow test was never done. I was told if I stayed over night, they would all come see me and have all the tests run on Monday. Monday at 10:00 am, I am told that I can do this all outpatient and I was to go home. I was so beside myself. I was sick, exhausted and hungry. On top of that I wasted my time and my family was stuck home fending for themselves. So unbelievable.
After Bill picked up the kids, he came and got me at the hospital. We did a few quick errands and then it was home to shower for me, naps for the kids and school for Bill. Then it was time to get Shayla and do homework. I fed the kids and then Shayla went to Daisises. Thank god Bill for some reason didn't have a second class this night, so he was able to get Shayla from Daisies. I could not put one foot in front of the other from exhaustion, so this was a huge help!!!!
Tuesday, was spent cleaning the house, making calls and catching up on all the things I didn't get done here while I was being wined and dined in the hospital. Also spoke with GI doctor's office about various tests getting scheduled. It was just nice to be home. I was still a complete zombie though. I had not slept at all while I was in the hospital.
On Wednesday I spent the day cleaning the house as well, getting things done for Bill, the kids, paying bills, making appointments and all that jazz. Leaving for Florida on Friday, so needed to have everything done before I left. That evening I attended a seminar on parenting. It was a great seminar. I didn't learn much because I a lot of it talked about parents who cave into what their kids want. My problem is that I never cave. I hate that I am such a stickler. I wish I wasn't. I wish I could back off. I hope to be a better parent when I feel better. Right now I am just always so sick, that I don't have the patience required when you have three small children. I try every day, but I do fail at least once a day. The seminar was great though as the woman teaching it was very funny. It was worth attending and I went with two friends.
On Thursday, I got up early and headed to my primary care doctor. I was told that I really should see her regarding the 15 lbs of fluid I have stuck in my body since having gallbladder surgery. Honestly, I never give my doctor any credit for being helpful as she is an hour away from me and knows none of the doctors I use. Well I found out today that she is worth more than I gave her initial credit for. She wasn't supportive when I told her I was going out of town to have bariatric surgery. She thought it was absurd. She did not understand why I didn't want the standard surgery provided her in Massachusetts. So she has never backed me up. Regardless, she is still my primary care. When she saw the initial weight loss she was was so stunned and happy for me. I see her now and then for various things, but for the most part, we don't discuss any surgery stuff as she isn't the one that follows me. I have my GI doctor follow me as she was the only one willing too after I begged her repeatedly and checked out all the local hospitals at her request and then still decided to go to Florida! So she backed me, but not happily. Basically she was willing to draw my labs, but wanted zero responsibility in the results.
Anyway, my primary was fantastic. She is very concerned about the 15 lbs of fluid I have developed. She believes it's all due to malnutrition. My Albumin in low. That is a protein level. If you don't have enough protein in your body, your body does not hold fluids and pump them properly. So my fluid has gone into what they call "third spacing." This is primary what Bill and I thought was happening. Dr. Kim agreed. She was very concerned about the throwing up, nausea and the interior chills I have been having. She doesn't understand the hesitancy on the part of my GI to do the swallow test. So she told me that the first thing I needed to do was find a doctor that specialized in nutrition. Not a dietitian, but a doctor that specializes in this. She also told me she wanted me to have a CAT scan and to get the swallow test done so we could see if there was anything anatomically wrong with me. I was there for over an hour with her. I could not believe how much time she dedicated to me. I was very pleasantly surprised. The visit went great.
Once I finished up at my doctors office, I flew home to start packing for my early morning trip. The van was coming at 3:30 am and I needed to be ready to go. Bill had school, so I had to pack and take care of the kids and do all the last minute prep stuff. Less than fun! It all got done though. It had too!
I never ended up going to bed. I did crawl upstairs at 1:00 am and laid down next to my suitcase and set three alarms. I could only rest till 2:00 am though as I had to shower and finish packing. To say I was tired would be a mild understatement!!! The van was right on time. Bill carried my suitcase downstairs, but passed out on the couch and didn't say goodbye to me. Oh well. Off I went down the highway. We made a quick stop in Shrewsbury to pick up a couple going to visit their son in Johannesburg. Needless to day I talked their ears off. I was fascinated by them. I got to the airport three hours early. I told them I didn't want that, but they said that they had to pick me up at 3:30 am. I have to say that I like to get to the airport early, but not that damn early!!!! So I sat and read my magazines until it was time to board. That and people watched. Everyone was walking around with something delish in their hands. I was starving, but so afraid to eat a thing. I didn't want to risk being sick.
We boarded on time and had an easy flight. Once I got to Florida, I jumped on a van and went and got my rental car. That was easy peasy. I got a little white Nissan. I got directions to where I was going and off I drove. It was a two hour drive to Avon Park. That was a drag. I was exhausted and hungry, but determined to get there. Once there I ran into two of the ladies attending the conference in the parking lot. We all checked in and met in the dining room for a salad. We ran into another couple there and all sat to have lunch. Needless to say the salad and I didn't get along. So I tried not to throw up while we were running out the door for Walmart. We needed a few supplies. Once we got what we needed, we threw our stuff in the room and greeted some of the others that had arrived. First I made a teary call to my friend Meg. I was so upset because I was there alone in Florida and I couldn't find anything really at Walmart to eat and when I try to explain to people how sick I am, they don't get it. They think it's all MGB related and so they try to share with me what has worked for them. However, this is different. I am sick and we don't know why. I just felt all alone. So I reached out to Meg. Once I got off the phone, I went to the lobby to see what the scoop was for dinner. Well dinner was pizza in. That to me could not have been a worse choice. People who have had bariatric surgery should not have bread, pasta, rice or anything bready and they wanted to order pizza? I came all the way from Massachusetts for pizza at the hotel. Even if I could eat it, I wouldn't eat it because I can't seem to eat much of anything due to throwing up and all that jazz. So another MGBer Carol and her friend Cathy said they would love to go out to dinner. So we jumped in my rental and headed down the street. We stopped at a place called Cowboys. It was horrible. They only had iceberg salads for me. The ladies were able to eat and they were fairly happy. The food was awful, but the company was divine. I love Cathy and Carol. Some beautiful ladies both on the outside and the inside. They were so loving and caring. I was so grateful to them for going out with me. I stopped next door and grabbed a soup for later and we headed back to the hotel where we all sat on the veranda and chatted up a storm. At that point, there were a lot more people. It was good to see them all.
Once back at the room, I tried to have a little bit of a Lunchable that I was told to buy earlier when we were at Walmart. The ladies felt it would be good for me to try. Biggest mistake ever. I ended up throwing up alone in my hotel room for two hours. There I was alone, throwing up, shaking all over and my stomach was burning. I was scared and normally I am not scared when I throw up. I throw up and it's done. It is over and I feel fine usually. This was pretty violent. On top of that, the room had a horrendous perfume smell in it and I could not escape it at all. To make matters even worse was that there was music blaring from the bar across the street. I just wanted to die. Seriously. I just wanted to die. I finally passed out after 2:00 am.
I barely slept all night long between the noise and the horrible smell. On top of that, I was at the front of the hotel and could literally hear every single car that went by. That is unusual for me. It was not a good situation. I jumped up and got ready and headed down to the seminar. I didn't care about breakfast as I don't eat breakfast. I walked into the seminar a little later than I meant too, but it was okay. I sat down and listened to two women discuss their tummy tucks after their weight loss. I have no desire to do that, so I really had no desire to listen to them. I like both women very much, but having that type of surgery doesn't interest me. In addition, I think if someone is going to discuss plastic surgery, it should be a surgeon. I want to hear from those that have had surgery too, but I would want to ask questions from a surgical standpoint! Shortly after that segment, we moved on to discussing supplements. This was led by one of the organizers. She shared what works for her and the important of supplementation and protein shakes and shots. We were able to try a variety of protein drinks. Sadly I was still really miserable from the night before. My belly was killing me, so I avoided trying anything. Then for lunch we were on our own. So my friend Bonnie and Lia and I took a walk over to the craft fair across the street. Bonnie could only join us for a short bit. She then went to help out with some scrap booking. Lia and I walked on and tried to decide what to do for lunch. I had no desire to eat, but Lia did. More importantly, Lia really wanted me to eat and was willing to try anything. Can I just say how much I love that woman. Sweet heart. A true love. So I figured I would give it a whirl. We came to a tent with a group of Jamaican women. We decided on potato salad, stir fry veggies and ribs. We were going to do grilled chicken, but it looked dry. So I said to Lia, can we try the ribs? I asked if we could split the plate as I could not eat all that food. I might not be able to eat it at all. So it cost us $4.00. We sat down in the breakfast room in the hotel and split our plate. I had a lovely time. I had ribs for the first time in my life. The kind on the bone. I kept trying to take the meat off with a plastic fork. Lia said to put the stuff down, pick up the ribs and just make a mess. I have never done that before. The ribs were low on meat, but high on flavor. I loved them and did really well with the food. I was so pleased. The company was far better than than the food. It was a nice time sharing our food and our lives.
Once we were done eating, we headed back to the seminar where we discussed food addiction and then diet and exercise. Not for nothing as the ladies giving these segments are wonderful, but I can barely eat. So I did not need to discuss food addictions. I know all about food addictions anyway as I had them before the MGB, hence having the MGB. I am grateful I can't currently succumb to them. On the other hand, the way I am eating now and feeling now is horrendous. So I don't like where I am at all.
As far as discussing exercise and diets, I know all about them. I have lived them my entire life. I have always exercised. I don't need to learn about Zumba, swimming and walking. However, it was a good segment and probably necessary to hear for the other attendees.
During the day we found out what our dinner was to be that night. Everyone was supposed to take $5.00 and head out to the nearest place you wanted to go and purchase food to share. You could go to Subway and get a big sub or Walmart for salad fixings. A lot of people hated that idea. If they didn't want to go, they could give $5.00 to a team member who would go out and shop for them. Only a few people were interested. So at some point almost everyone decided they wanted Chinese food. Another big no no for an MGBer with a weight issue. I did not want Chinese food. Again, I can barely eat, so Chinese was not the way to go!!! So after talking with some others, we decided to go out to Ruby Tuesdays at 6:30 pm. Personally, I think every meal should be scheduled out. A restaurant should be reserved for every dinner. Not just because we are all brought together by a common weight loss took, but due to many dietary restrictions. I don't care if we were at a convention for cameras or couches. So many people can't eat certain things, so we should be at a restaurant so someone can have a salad, soup, shrimp, chicken, beef or just veggies. The fact that we are a group that have weight issues, I especially think this is very, very important. Additionally, most people that attend this conference are from Florida and if they aren't, they are snowbirds and are there for the winter. So they have 1-3 hours to drive. I have to get a van to take me to the airport which is expensive, take a flight, get a rental and pay for the hotel and everything else. So if I cam going to put for the effort and expense, I want to be able to try and eat out and eat something that I can actually have!
We made reservations only to find out when we got there that they didn't have our reservation. So we had to wait they said approx. 35 minutes. We waited nearly 1 and 1/2 hours. So disgusted by that. We were starving too. They said that the managers don't check online reservations at 5:00 pm at night. Really? How can you do that without saying something online like "Hey, call us if you are booking a reservation after 5:00 pm." We finally sat down and ate. Food was great. I got the grilled shrimp. I never order grilled shrimp. I did well with it. I was thrilled. Once done, we headed back to the hotel and connected with all of the others. We all sat on the veranda and chatted the night away. It was a wonderful night. I love my MGB family. They are wonderful. I finally went to bed somewhere around 2:00 am. Actually I attempted to go to bed. I never slept again. At this point I was an overtired wreck!
I got up and got dressed on Sunday and headed out to the local restaurant to have lunch with everyone and Dr. Peraglie. Lunch was great. Dr. Peraglie actually cornered me and wanted to talk immediately. I felt awful about that. Everyone was there to see him. He was not there for me. However, he said that I was the only one that was sick and therefore he wanted to talk to me. We actually talked for quite some time. I had a hard time concentrating because his beautiful son wanted his attention. In addition, I felt so bad because like I said, others were there to see him. We decided a course of action. He wants me to do the swallow test/upper GI and also a CAT scan. So he has asked me to call my GI doctor the minute I return. Once we finished talking, I sat down to have lunch. It was great, but at that point I felt like I was rushing, so I didn't get to eat much. Right after lunch, everyone dispersed for their drive home. I headed out to Bed, Bath and Beyond and Bealls. I also got a diet lemonade on the way back to the hotel. Once I got back to the hotel, I grabbed some stuff that needed to go back to Walmart and then I went back to the room to pack. Sadly, I didn't get to enjoy the day in the sun like I really, really wanted to do. After packing, I had a little dinner. I felt awful after. I didn't throw up, but I was so full of trapped gas, I could literally not even take my evening medication. I laid down and tried to sleep. I didn't sleep at all. I heard every car going by. It was an awful night. I was up and out of bed by 5:00 am. I took a quick shower, threw my stuff in the rental with great difficulty and headed to the airport. A nice and long two hour ride. I don't mind driving or long rides, but it's pretty stressful when you are trying to find the airport and there are tons of airport signs. I find Florida to be pretty difficult due to that. I finally pulled into a gas station and then had to sort of make my way to the car rental place. Thank god I found the place. I was afraid I would have a stroke if I didn't. I dropped off the car, jumped in the van and headed to the airport. An hour later I boarded the plane for Boston. Once home I grabbed the van and headed to two different towns to drop off other passengers. I didn't get home for two hours. I then dropped my stuff and grabbed the kids from Rebecca's house. I was frazzled, overtired, hungry and a host of other things by the time I got to her house. I felt awful. I had to still do homework with Ping and get her to Daisies. It was a long day.
In addition to the above, I came home to find out that I didn't win the case against the videographer that never finished the DVD and that we didn't win an appeal on an unemployment issue. I was just devastated. So that did not help in the least.
On Tuesday, Bill took my car to have the water pump replaced and I went to the school to volunteer. However, since they had MCAS testing, I didn't need to be there. Wish I had known that before jumping out of bed. It worked out though as I had a ton of errands to do. So off to Wegmens and a bunch of other places I went! I then picked up Yamira and Manny and brought them home for lunch and a nap. I spent the day making a bunch of phone calls, cleaning the very messy house from the weekend and doing a host of other things. So glad to be home, but felt really overwhelmed by everything that needed to be done. Bill had school, so I got Ping and we did homework and then the kids played. Dinner and books followed and then bedtime.
Wednesday I got up early as I had a cranial sacral appointment here for 9:30 am. That went well. I didn't feel more balance after and usually I do. That was disappointing. Not sure why I didn't feel more balanced. May be due to having so many stomach issues. I spent the day doing a little more cleaning and making important calls to doctors. I found a doctor of nutrition and got that appointment booked. I was feeling hopeful. We caught up on homework and girl scout homework and a few other things. I felt a little less overwhelmed. Bill had the fire department, so I was on my own for books and bed. I am used to it, but still fighting extreme exhaustion.
On Thursday, I met my sweet friend Christine for lunch. I had left me jacket at her house on St. Patrick's Day and I was desperate for it. So we met at the British Beer Restaurant. I ordered Shepard's Pie. It was delish and I did well with it. We had a nice lunch. It was so good to see her. I then headed home as Bill had school. Once home I woke up the little ones and we went to get Ping at school. We then headed to the JCC for a play date with our friend Cari-Lynn and Meri. The kids had a blast. I had a nice time chatting with the ladies, but was super cold the entire time. We then left because we all had to get home to do homework and to have dinner. It was a great day though as I got to see some of my favorite people.
On Friday, I had a 9:20 am appointment at St. Vincent's. I woke up for it, but fell back asleep. So I have to say that I missed the appointment. I didn't miss it, I just could not make it in time if I was to shower. I was meeting with the Nurse Practitioner that I knew wasn't going to be able to help me anyway. Regardless I was mad at myself for oversleeping and not making my appointment. I did get up and shower though as I had a 3:00 pm appointment at Brigham and Women's to meet with the Director of Nutrition. That went well. That went really well. Finally I have a team!!!! The woman was wonderful. She is going to get me set up with everything I need. They are used to seeing a lot of people that have had bariatric surgery. They are used to seeing a lot of surgeries that have gone bad. More importantly, there are Endocronologists, GI docs, nutrition doctors and more. I don't have to coordinate my care anymore. Thank god as it's been so darn exhausting to coordinate my care. There has been no coordination no matter how hard I have tried. Finally I am going to be with people that really know what they are doing. At least that is the promise I received. Unfortunately this doctor was going out of town on vacation. What is a week though? I have waiting for over six month!!! I can wait a week. In the meantime, I am firing all of my people. I told her that both my primary care and Dr. Peraglie my surgeon thinks that I may need to do TPN. Actually my GI doctor got on the phone with me yesterday and she said she was very concerned and thought maybe I needed to do TPN too. Where has she been when I have told her how sick I have been for 6 months? The fact that I am so low on Albumin is not news. The gallbladder surgery put me way over the edge. My body could not handle the flushing of fluids. Unfortunately I am now stuck with 15 lbs of fluid in my legs. So not only do I feel horrendous, but I look horrendous and can barely walk. It's devastating. My primary doctor told me that I was literally a chronically ill patient at this point. It actually felt great and validating to hear that. I have been so sick for so long, I can't stand it. It's so upsetting, devastating, unrelenting, inconvenient, painful, emotionally draining and so on and so forth. If you don't know what TPN is, it's nutrition through a tube in your arm. It's awful. However, my primary and now my GI doctor are concerned I am behind the 8 ball. Well I have been for some time. It is not like I haven't been telling them my concerns. Anyway, this doctor of nutrition said to hold off on the TPN for now. I would be happy too. On the other hand, I want to get rid of this horrific swelling. I just don't know what to do. The doctor I saw at Brighams said that she felt that we could get things straightened out, but we needed to look at the swallow test first. Just to hold on tight and eat when I can. So that is what I set out to do. I drove home feeling really good about the appointment.
I did not feel so great about being on Route 9 at 5:00 pm, but that is okay. I made it home in a decent amount of time. The rest of the night was spent getting the kids dinner, baths and beds. I then did a few things at my desk and sat down to watch a little TV. That felt good. I felt guilty as I had things to do, but it was nice to sit. I am so behind on movies and that sort of thing. I thought I would catch up, but passed out at some point.
On Saturday we had plans at 10:00 am to do an Easter Egg Hunt in town, but due to the weather, it was postponed. We were then going to take the kids to another Easter Egg Hunt, but to be honest, Manny and Yamira have been so poorly behaved. So I told Bill we were doing errands and that they didn't deserve to go. It hurt me more than it hurt them. I hated doing that. However, we had plans for Dragon Night at WPI and they really needed a small nap before we headed out to that. So we went to the library, post office, CVS, bank, Wegmens, Panera, Bed, Bath and Beyond and then Pier One before heading home for a nap. I brought sandwiches so the kids could eat in the car. At 5:00, we got the kids all dolled up and headed out to WPI for our big night out. The performances were great. We had a wonderful time. In addition, the kids were all beautifully behaved. I was thrilled.
On Sunday, Bill took the kids to Sunday School. The minute they got home, we jumped in the car and headed to Sterling for an Easter Egg Hunt. We then headed home so the two little ones could have a nap. At 2:30 pm we headed out to Coco Keys in Fitchburg for a Daisy event. The Daisy troop sold so many boxes, they earned a free trip to Coco Keys. We have always wanted to go, so we went as a family. We had a nice time, but it was an exhausting weekend and I could not wait to get home. That and Manny and Yamira really were not behaving well. They were doing things they were not supposed to do and not minding Bill and I. We had really had enough. So we left to head home at 6:00 pm. Once home I read the kids a book and tucked them into bed. They were exhausted. I then did a few things at my desk and then sat down to watch a little TV. I kept trying to watch "Black Swan." I was so determined to watch it that I watched a little, fell asleep, woke up to watch and then would pass out. I did this till 4:00 am! The movie was horrible, so why did I waste my time and precious rest? The things I do!
Today was a good day. I feel like I got a lot done. I had an appointment with the Nurse Practitioner, the one that I didn't make it to on Friday. Waste of time, just as predicted. She couldn't help me at all. She didn't see the issue with the 15 lbs of fluid. She was not sure what was going on at all. However, she thought it could be due to low Albumin when I mentioned it to her. Um, thanks for nothing. I basically put on my coat, thanked her for her time and got the hell out of there. I am sick and tired of St. Vincents. Nobody seems to know what they are doing there. It's very upsetting, maddening, sad, confusing and a big old fat waste of my time. Once I left there, I went to radiology to pick up my barium drink for my swallow test next week. That makes me sick to think about, but it needs to be done.
Once I left St. Vincents, I headed to Lucky's Cafe. I have never been there. Small little place. I met my friend Audra. I haven't seen her in ages. It was great to catch up with her. I had a soup and a little salad and then headed home to the kids. Bill had school. Ping did homework and then I brought her to Daisies. Before I knew it, I had to pick her up and then it was home for a book and bedtime. Since them I have been here updating my blog and putting some pictures on Facebook.
Okay, I so have to get off of this blog. I have so much to do. I love updating it, but I was so far behind. I feel like I rushed and just threw stuff up there. I am sure I missed major details. It's just so late at this hour It's getting close to 11:00 pm and while I am sitting, I am not doing anything mindless and would very much like to a this point. So off to put a few pictures up and then try to update sooner rather than later? Yeah, right.
Thanks for you time. Thanks for following my story and sending well wishes. I have never needed them so much since losing my parents!!!!
Mama Out!!!!!!!!!!!
Noah's birthday party.
Bill and gorgeous T.
Beautiful girls!
Elizabeth's birthday party.
Daisy Circle.
Daisy ceremony.
Ping and her new library card.
Lunch with Christine.
Ready for tea.
Such a lady.
American Girl Doll.
Tea at American Girl Doll.
St. Patrick's Day lunch with Christine and Mason.
Yum.
Friends.
Lia and Frank at MGB conference.
Carol and Kathy.
Dr. Peraglie, Bonnie, me and Flo.
Silly tunnel girl.
Dragon night.
A star.
Beautiful.
Fashion show.
Gorgeous girls.
Easter Egg Hunt.
Easter blow up bunny.
Coco Keys.
1 comment:
Jill,
Well, thanks for catching me up on everything. Wow! I'm actually kind of shocked you went all the way to Florida feeling so ill. I mean, I think it's great you had a chance to speak with your doctor, but I don't think I'd have the gumption to go by myself feeling that way.
Yeah, it sounds like you need to fire St. Vincent's in general. I am very hopeful things will continue to go well with Brigham's!!! Finally it seems you found some people who might know what they are talking about. Phew.
Keep me posted. You're in my thoughts!
Heather
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