Ms... The known and the unknown

Lots of people have asked me if I had any symptoms of MS before my diagnoses and the answer is YES! I have known for a while that something was wrong, but was just unsure of what it was.

I have had a lot of random issues mainly over the last 2 years that has made my life very challenging. Ranging from vertigo, tingling, migranes, leg and foot pain, change in my balance and complete exhaustion. Most of the symptoms I've had can't really be seen externally though now I do have more trouble when I over do it, am exposed to extreme heat or am stressed. All of this just gives me emotional turmoil and anger because I hate being 38 and feeling like a 90 year old.

 Every time I went to the doctor they found nothing wrong with me, even though I felt inside that something was wrong. But since I was told nothing was medically wrong I just kept pushing myself only to find myself more worn out. I worked out, dieted to try to lose weight in an fruitless effort to get more energy to do what I needed to do.

Most would comment it was because I was raising 3 kids and not getting enough sleep or I needed change this or that - none of those tricks worked. I worked out and try all kinds of tricks, had my blood checked for thyroid problems, diabetes, and vitamin deficiencies and all results came back "normal". I am not going to say that raising 3 kids is not exhausting, but I started every day exhausted, even before I did anything for my littles.

My exhaustion was worse than just a little bit of being overwhelmed and tired, it was more like  painful to do what I needed or wanted to do. As any parent knows, kids don't give you a break when you are sick. So I was in "go mode" all the time. I would do all I could do until Brian got home.
Thank God I have a husband that steps in when I need him. He is understanding when I tell him I can't do something or need help. I am so blessed to have a true partner in this marriage.

I still did anything I had planned or wanted to do with the kids because even though my gut told me something was wrong, medically I was told all was normal. So I went to the zoo, the park, the pool vacations, and other activities. I just did not feel great while I was there, but I just told myself "it is not about my enjoyment but about the kids having fun". I used to enjoy all these things with my kids so I got increasingly frustrated when I did not really enjoy myself. I just wanted to go back home. Home was not really easy either though because there is piles of laundry and dishes and work to be done here, while kids at that age still needed to be constantly entertained. Knowing that my bed was so close and I could not just lay in it when I felt bad was almost more frustrating than being out.

When I finally received the MS diagnosis, I was a bit relieved that I was not going crazy and that there really was something wrong with me, but not too thrilled that it was a lifelong progressive disease. Even though I was diagnosed, I still felt the need to push myself even though everything I read told me how I need to slow my life down and relax more and not push myself. I was thinking "I'm not 90!"  I am not going to slow down because of this disease, but I found myself tired all the time still so I decided to take some of the suggestions and started making my life simpler.

The first one I did was assign Brian to dishes - FOREVER. I had already been leaving them for him for a while but now decided to make it official. The kids used to have to clean up every now and then, but not as much as I did but now they are are my little helpers. I do not want this disease to become a burden on any of them (my husband or my kids), but it is going to help us bond more as a family because we now do everything as "Team Pierce". I have also decided that even though I had a five year plan of home improvements and five years later we are still stuck in phase 1, I had to just let it go. I will get to that stuff when I get to it. I have had to let a lot of things go, you know, not sweat the small stuff! It is not easy and though I say I am doing it, I am only doing it a little. It takes a while to slow a high strung person down. This disesase has done a lot of it for me and on the days that I don't feel well I really do not care about all the stuff I have not accomplished, but on the days that I do feel well, I do get angry at what I have not done or what I have to do just to catch up.

I realized this is not a disease to take to a back seat to, I need to stay proactive in my exercise and  eating and keep my mental health in order.  I am now on a new oral medication (which is exciting because most MS medications are injections) that will hopefully slow down the disease's progression. I am not a pro at this either. I have only been aware of this disease for 6 months. I have a lot more to educate myself on and a lot more stuff I want to do before it get worse and I have a lot more to learn about chilling out and taking a break.

It is pretty easy to stay positive when I feel good. The tricky thing about this disease is it can throw you off balance (literally) at any time. It is embarrassing to fall in front of others and it brings in all kinds of bad thoughts into your head while you try to stand back up. It is easier if you have been drinking all day when you fall, at least then you can blame something external.  However, a feeling of your own body giving out on you is a hard pill to swallow. Reading some of the material about the disease is tricky too. Sometimes it is nice to be educated about what you are going through adn to have validation for something you are feeling, but there is a lot out there with this disease that I have not experienced yet and don't want to! So when trying to educate yself sometimes I find out about symptoms or issues that scare me and then I have to work on bringing myself to trying not to worry about it if has not happened to me yet!

You never know when an attack is going to happen and you never know what it will be. Sometimes an eye loses vision, sometimes it's vertigo, sometimes my legs feel like jello and sometimes they lock up and simply won't respond. It is hard to stay positive and keep exercising and eating healthy and keeping a strong mental state when you have no idea how this came about, how long it will be here and if it is permanent. Luckily, my husband is good at reinforcing the positive into my life and though my kids are exhausting, they really love to help me when they know I am having trouble.  That in itself makes my heart melt!

There are many other struggles ahead with getting on the right medicine and getting it approved by insurance, being able to afford the co-pays, getting child care covered when I have doctor appointments and probably lots of other things I have not even encountered yet. The drug I am getting right now has not been approved by my insurance company so the manufacturer of the drug is providing me the medicine for the first year. Depending on whether or not my insurance company is going to comply, I may have to switch medicines, even if this one is working. That is really frustrating.

I worry that I may somehow pass it on to my kids. They say MS is not hereditary but they also don't know what exactly causes it.  Even so, there are many people that are related that do get it. A lot of people with autoimmune diseases are lacking in vitamin D so I am keeping up with my kids' intake of that to at least eliminate that possibility! I will get them checked every few years to make sure they have appropriate levels.

Since finding out about having this disease and making some small adjustments to vitamins and finding small improvements on conserving my energy has made a huge difference in how I feel day-to-day. I have had more good days than bad in the last 3 months. The drug I am taking does not help me in the here and now, it mostly is to help slow or stop the progression over the next 20 or so years. The goal of my doctor is keep me at the stage I am in now for 20 years, or until a cure is found. My goal is to feel like I am 20 again! I think if I can keep up with my regular exercise and stretching routines and this medicine does what it is supposed to, I will at least feel my age for the next 10-15 years.

We appreciate any support and prayers you have for our family. This picture was taken at our first family MS walk to show support for my new disease and help support finding a cure! It makes my heart so full of love to know that every one of my family members is behind me and wants to make sure that I am ok. Even Sophia often asks if I am feeling ok! This our new journey. By 2014 I hope to have a new tag line and logo and tshirts for my supporters!

Ready, Set, Prep!

In less than 3 weeks I am undergoing a major surgery to improve my quality of life. I am so tired of the pain, constant discomfort and embarrassment that comes along with having large breasts and can't wait to change that! I am looking forward to holding my family closer. Now is the time for preparation. The advantage of knowing ahead of time of when the surgery is and how long the recovery time is that I can prepare my house and my family for this transition.

This week I have been cleaning and trying to organize the house too. If someone asks me where something is, I wanted to be able to tell them. I also cleaned out my fridge so that it is ready to stock up with the foods that my husband and I are going to prepare ahead of time and groceries I will need to have on hand for my never completely full babies. I need to work on the kids rooms and make their clothes easy to find and tell my husband and my kids the system so they can also find what ever they are looking for.

Though it sometimes seems like a short time, I will be out of commission for 2-4 weeks. With the 1st week being completely out of commission for myself, but more importantly, my family. I am very nervous about how all the pieces need to come together for this so that I can heal properly and yet also not have my family, or my children without meals, transportation and general care. It will be hard not to hold them, pick them up and care for them as I have. Sophia will have the hardest time with it, but we are working on preparing her more and more each week as it gets closer. In the grand scheme of things, I have been waiting a really long time to have this done and now we all just have to suffer through 2-4 short weeks and it will all be better. That is what I keep telling myself anyway!

Luckily, I have an awesome church and friends that are willing to help me get back on my feet and fully functional. I am so thankful for them and would not be able to do this without them!  I am also planning on using that same group from church and friends to pray for my surgery, my recover and ease my fears of anything tragic happening that end my life instead of improving it. Unfortunately it is a risk and one I worry about alot. But I am trying to improve my life, my health and keep up with my kids and since the risk is small, I am praying for a successful outcome!

With this surgery is a lot of other changes I am making. I am aware that my breasts are not the only trouble spot on my body and I have already started many changes to transform the rest of me too, but most of that work will start after surgery and recovery. I have been working out for a couple years, I started making major changes in my diet since this summer and plan on stepping all of these things up a few notches after I am recovered. Well, the eating the right things can start right away, but the working out will be a gradual process to get to the level that changes start taking place in my stomach, arms and legs. I am going to take a picture of myself tomorrow and will have some progress by June, but hoping for even more progress one year from today.

2013 is my year for improving me and my family at the same time. Brian is on board with me for our new healthy eating and we are researching new ways to make it easier. Hopefully I can get  my kids to eat healthier and luckily they already love to exercise! If you have any ideas, we are considering all options at this point! Four days prior to my surgery

I still have a lot more preparation to do with meals, chaildcare and planinng, but now that Christmas is over, preparation is my number one priority! 

Happy New Year to all of you!

Sea World

 

We were so excited to go to Sea World with my parents and the kids. Brian had to go to Orlando for a week for work so we tagged along with him and then invited my parents up from Port St Lucie to join us! We tried to keep it a secret from the kids, but as soon as James heard we were going to Florida, he knew Grammie and Poppy would be there!

We had an awesome time seeing all the Orcas, turtles and dolphins. All 3 kids love all animals so much it was really neat for them to see them up close! I would do this trip again in a minute!

death defying!

Well, after a very stressful week of thinking I was dying, I found out I have a hemagioma. See definition below. So I went to the ER with stomach pains and the ER said they thought it was either Apendicitis or Kidney stones. After some tests they said itwas not either of those and sent me home, but right before I left they said there is a spot of some sort on your liver, tell your doctor about it and get it checked out. So I worried at first and went to the doctor right away, but she said, it could be anything from nothing to something serious so lets just wait and see what the radiologist says and we will get back to you. So after a couple days of not hearing anything I kind of started to relax a bit until Monday morning when a nurse called first thing and said I needed to go to Northside and get an MRI of my liver ASAP. I was disappointed that my doctor was not in so I could not ask the million questions going thru my mind, but she said that they were faxing over the order to northside and I needed to go there as soon as I could make an appointment. THAT made me really worried. I called my husband and booked the appointment for the next morning. In the past when I have needed an MRI or any other test I either picked up the doctors order or they mailed it then I made the appointment and the fact that they were faxing it and not allowing enough time for me to pick it up or for it to be mailed made me worry even more!

So all week after the MRI my mind was racing with all these thoughts and of course I researched the internet and decided I was dying. I started making a list of all the things I needed to do before I died and none of them involved like skydiving or trip around the world, they were all to get thigns in order for my kids and my husband. I went into a huge panic depression over maybe not seeing important events in my kids lives to maybe not evening seeing any of my kids hit double digits. And my poor husband, working his tail off at work to race home and figure out 3 kids, he would be so stressed all the time and all alone. So I was thinking of joining eharmony and finding him a new wife, or at least getting the process started. Maybe I should have just looked into mail order brides- something!

I had all these ideas of recordings I wanted to leave the kids and when was I going to have time for that in between treatments and actually spending time with them. I wanted to make sure I got caught up on their photobooks and keepsakes. I, at this time, am not dying and I am so thankful, more than ever because there is so much to do in such a short time. If I would have had liver cancer, they usually barely make it 6 months, and if you are lucky barely make it 5 years and that was just so overwhelming. The sad thing is, there are people out there who have to think about these things and my heart goes out to them and their families. I am so thankful that I dont have to do all of these things right now and can just spend time loving my kids and my husband and not taking them forgranted and pray for those who have this burden.

So after several days of all this huge stress, they call and say it is hemangioma- it is not cancerous! I was so excited. Beyond excited. THANK YOU GOD!

According to the Mayo Clinic is ---A liver hemangioma is made up of a tangle of blood vessels. Most cases of liver hemangioma are discovered during a test or procedure for some other condition. Most people who have a liver hemangioma never experience signs and symptoms and never need treatment.
So there you have it, NON CANCEROUS! Yeah. But of course they scare the crap out of you before you know this outcome and it is very stressful!

Soccer

This year we signed James up for soccer- though we have not ever been focused on one sport or another, since James was able to walk he always showed such athleticism- he can catch any size ball, he can dribble a ball both with his hands and as they do in soccer with his feet. He always would try to do crazy stuf too, like catch a ball while jumping, or trying to kep his balance on a box and catch the ball. Anyway, we have been excited to get him into sports to see what he could do- so we even got him earlier than we should- since he was supposed to be 4 before SEPT 1st to play- Brian talked to the guy, James tried out and he was in!

Well, if he is going to be an athlete, and if this year counts for anything- I dont think it is going to be in soccer! He does so well playing soccer by himself, but he just does not get that the other kids are not going to kick the ball TO him- he needs to go after it! Not only did not go after it, but he spent most of the time being in teh way of his own teammates, or just walking around with the coach on the field. Oh, it drove me nuts!

So every Thursday we go to practice at 5:30- I have to load everyone up and try to keep the girls occupied and entertained for that hour, which is not always easy. On Saturdays, we all get up at quickly eat breakfast to get the field, it takes longer to get 3 kids 3 and under out the door with all the supplies than it does for James to play- if you even call it playing! he did do better at practice then at games, however, they broke out into smaller groups or did drills and he is good at that part- it just game days- oh he gets out there, and we are all on the sidelines, he would just walk of the field and say- "I want to watch the game with you", or " I am hungry", I am too tired to play today", or "it is too cold"---- it drove me even crazier because I had to hall all three kids to and from each practice and games, with all this stuff and he was not even playing, not even trying to play soccer!

There are both older kids and a couple his age or younger on the team, and though not every one of them was fabulous, but they did at least try during the games to score- even if it was in the wrong goal! I would have been so thrilled for him to get a goal - even if it was for the other team! So each week, I would just cheer for the other players on his team, and hope that next week he would step it up and play- NOPE!

Oh it gets better- at the last game they all got a little trophy.. every one gets one. On the way home, James says, "this trophy guy looks just like me" and it took I had not to say to my 4 year old- "Not really, he is actually kicking the ball!" I just said to my husband and then took him home to pack up the soccer stuff for a LONG time!

I am so glad soccer is over!

Annual pumpkin patch

Every year when my parents come down we take the kids to the pumpkin patch. Last year Sophia arrived a couple days before we were supposed to go so we went Halloween day! It was still fun and not as busy since it was so late!

This year we decided to try out Burts since everyone has talked about it for so long. The drive was definitely longer, but the pumkin pie we brought home from there was delicious! The kids had a good time on the hay ride and looking at all the pumpkins.

The kids had a great time and I always try to get some decent pictures. Here are a few!

I Survived!

I survived my first full year with 3 kids 3 and under. There were days that I was not so sure I would make it, all three kids kept me very busy along with a few health problems trying to keep me down. Last week we celebrated our first combo birthday party for James and Sophia. This year since Charlotte is little too young to full understand that her birthday is 6 months later, we decided to celebrate her half birthday. We had a Pirate and Princess Party, we invited many friends and relatives to join in on the fun. The kids had such a good time and we were thankful for the awesome weather and that many kids that came, played their part and dressed up also!

It has been a hard year, from the unexpected early birth of Sophia and suddenly having 3 kids who cannot do anything for themselves it was a very physically demanding year and it did not help that I had a few medical problems throughout the year as well. I had heart trouble after Charlotte and thought I did everything I could to avoid it when having Sophia, but that was not the case. I had a low heart rate again and chest pressure so I had to be re-admitted into the hospital. I have always had migraines but I guess they like to reappear after having a baby just to complicate things. As the year went on, my migraines were less and less, thankfully!

I also developed vertigo this year. I had a few really bad episodes where I could barely walk, luckily it was on a few weekends, or close enough to one that I could get by. But it has not completely gone away so I have had to adjust to how I do things and how I can control it. I drive slower and I do not turn around as fast and I watch myself more for balance and things. It has gotten a lot better, but I can still feel it every now and then. Brian and I went to a football game in September and when the crowd shook the seats it made me nausea. I cannot watch TV shows that have fast moving cameras, I probably will not be able to watch my Own home videos, since my camera work is terrible.

In September I had some sort of an allergic reaction and had hives all over my body that was very itchy and uncomfortable, then at the end of September I developed shingles, just as I was getting over shingles, I was in a car accident that hurt my back. I am hoping that my random health issues are over and I can concentrate on feeling good and getting back into working out and getting some of my energy back.

I did complete something I never thought I would ever even start, a triathlon. That was way more a challenge then I ever thought it would be. I did complete it and feel good that I did that, but training was hard- Brian was so supportive the whole time and often trained with me. I enjoyed the actual training when I did it, but getting to the Y when I needed to go was a huge problem with 3 kids and my random healthy issues. I did fine on the stationary bike, but every now and then I would get vertigo while riding my bike and riding near cars or other bikers passing me made it especially more difficult. I also was not prepared for the hills of North Carolina, boy did they kick my butt! I did jog more of the event than I had in training and was really proud of myself for that. I also was not the last person- there were not many behind, me, but I was not last!

It is still amazing to me how much babies change in that first year of life. And knowing that it was my last time going through each stage for my last time made me appreciate them more and more though at the same time I was anxious for her to get to the stage that James and Charlotte are at now. The whole year was really like being with two 3 year olds and a baby.. it was helpful that the older two were pretty much at the same stage because I could do the same things with them both.

All three of my kids amaze me every day with how quickly they learn and are excited to know more. I am so impressed with how quickly Charlotte caught up to James and I feel certain that Sophia will be caught up to Charlotte by the middle to end of next year or sooner. She is already pretty close in height and weight! James, now 4, is still way ahead of his age with his vocabulary and his understanding of things. If you teach him something one time, he has it in his head and is willing to teach it to the next person. He has been so exciting to watch grow and learn. Charlotte, though she can be so sweet and sometimes shy also has a sassy-ness to her that is going to be challenge as she gets older, but when she is sweet, she is really sweet!
Sophia has her temper tantrums, but she is not as sassy as Charlotte. She is really a mix between the first two which is a great combination to be! She loves to give hugs and really wants to be able to keep up with the other two so she will be joining the action in no time.

Though Brian works a lot of hours and is not home as much as we want him home, he is a great dad and we are incredibly blessed to have such a loving supportive father and husband. I know on the days or weeks that I was especially tired I took out all my frustrations on him. He works very hard so that I am able to stay home with our children and raise them the way we want to raise them so I am very appreciative of all he does!

This last year has been tough, but I would not trade it for a thing. I love taking care of my babies and doing fun things with them. The most physically draining year is behind us now and soon enough they will all be able to get in and out of the car themselves, buckle and unbuckle themselves, get dressed themselves and pack a suit case for themselves and so on, so I am glad to do these things now. I could do without the medical issues, but since I can't, we have learned to just roll with them. I am looking forward to the many changes my kids will go through this year. Sophia is going to learn to talk and run to keep up with these 2. James is going to be getting ready for pre-k going to school 5 days a week and Charlotte is going to be learning a bigger vocabulary and making friends at school.