It's gonna be MAY, oh wait it is...

I've had so much negativity in my life lately. I recently had to deactivate my facebook because I just couldn't handle how upset it made me. With my Crohn's Disease I do not need that negativity and stress in my life. I plan to eliminate anything that causes me distress.

Since my last post, I have been put on a new medication to help treat my crohn's. I had my second loading dose of Enytvio. It is an infusion that I will get every 8 weeks for the rest of my life (or until it stops working which I hope does not happen). It's a 30 minute appointment which is a big change from the 3 hour appointment with the Remicade infusion I was on. I found out in November that I had developed antibodies to Remicade, so therefore was switched to Entyvio. I am also on a 40mg taper of prednisone. I cannot wait until I no longer depend on prednisone because it is such an icky drug. Day sweats, night sweats, bloated "moon face", constant hunger. YUCK! I've been feeling pretty good so lets hope this continues.

I have also had some stress with my job. I work for a contractor, and recently the contract was up and we didn't know whether we would get to keep the contract or if a new company would come in, well a new company came in and took over and it was a complete mess. I had to go to a job fair to apply for the job I already had. Needless to say, I got to keep my position but lost ALL of my benefits I had worked a long hard almost 3 years for. FMLA, health insurance, life insurance etc. So here I am wishing and hoping for the best and that I don't flare and get fired from my job. Luckily my husband was able to get health insurance through his work to help the family out. We are still waiting for coverage and I'm hoping it hurries. I need my infusions pre-approved before my June infusion.

I don't think people see or understand all of the stress I am under because they continue to put me in stressful situations. I try to handle and control everything and try not to show weakness.

The kids are doing great, Austin is doing great. School is almost out for Gavin for the year. I can't believe he will be in 4th grade next year. I am hoping to get Kynlee in preschool here soon.

Not much else to report.

-Ali

Pot of Gold Champs 2017

Not much going on over here, just trying to get through the week. My 29th birthday is in a couple weeks and I am trying to think of something fun to do. At this point, I would just be happy with going to Red Lobster and going home and going to bed these days. I have been feeling pretty good, and trying to get out and get exercise. I have lost about 10lbs in the last 2 months, which makes me feel good. I've been watching what I eat and haven't had much of an appetite so I think that's helping out. Last weekend Austin and I went out for St. Patrick's Day because he had a bowling tournament. He was bowling with his dad, uncle and cousins. It was a very fun night, and they won 1st place! They all bowled awesome. I am so proud of them!

 

On Sunday we took the kids to see the new Beauty and the Beast. It was really good, we enjoyed it!

 

 This weekend we really don't have any plans, Austin works day shift on Saturday so I kind of want to plan something fun. I need to get my butt in gear and start getting some wedding stuff done for my sisters wedding. It's not until November, but I want to make sure everything is perfect for her special day and the parties leading up to her special day. Here's to a good rest of the week, and a fun weekend hopefully.

-Ali

Friendships when you crawl into your 30's

There's a lot to be said about having friends. When I was just an infant, my parents moved my sister and I from a small little town in the country to live here in Davenport so we could have a chance at having more friends and more opportunities in the city. Unfortunately my sister and I didn't catch what my parents were throwing.

As kids we both were shy, didn't talk much, and probably threw away dozens of friendships because of it. I remember being invited to things and I constantly turned people down. I still do that to this day. I'm not proud of it. I didn't stay at slumber parties and would always call my mom to go home halfway through the night. I can't tell you how many friends I lost doing this. Then when you hit about middle school, kids you hang out with end up going to different schools, and then even more so when you hit high school. For the longest time, my only friend was my best friend that I met in middle school. To this day she is my ride or die.

Now as we grow up and lives change, and people change, I find myself in a place where I wish I hadn't cancelled plans. That I hadn't blown people off who wanted to spend time with me. To all of my old friends who I lost touch with, I am so sorry. I wish we had stayed closer and I had put more effort into our friendship. I wish I had stopped and told myself, "Ali, things won't be this way forever enjoy them while you can." At the end of the day you will always have your family, but someday when you get older, your kids grow up, you will need friends to pass the time and make life fun again. I love my husband and he really is my best friend, and we have so much fun together, but outside of our relationship, it is important for us to have friendships.

They always say growing up is hard to do, but no one ever really tells you how hard it actually really is. Keeping a home life, bills, kids activities, day to day life. Where did all the fun and silly times goes. Acting stupid and laughing about it. I SO miss all of my friends and spending all my time with them, but there comes a time when everyone has their own life, and their own thing going on, and that's just life. I miss going out of town, or hanging out with my girlfriends every weekend even though most of the time the kids were always tagging along with us. It was still fun. Dinner, desert and renting movies, staying up until 2am while the kids were tucked in their beds. My life has now come to weekend bed times at 10PM.

As I'm creeping into my 30's life is getting scarier. I need something to fill my weekends and bring joy and excitement into my life. I want to get a camper sometime in the near future and have a weekend hobby with my family, where we have a chance to meet new people and families like us.

To all my friends I don't spend every waking hour with anymore, I miss you so much. I pray someday things can go back to being silly, stupid and fun again. I'm here. I've always been here. I wonder if you miss those times too. If you sit here like I do and wish you could turn back time. I am so happy all of you are in a good place and happy, and living life, but I miss you so much.

Living with a chronic illness

As I have already mentioned, I am living with a chronic illness. I have Crohn's Disease. I had never heard of it or known anyone with it until the day I was diagnosed with it. It's crazy how many people I have met on my journey especially the nurses I have had caring for me who have revealed that they themselves also have Crohn's disease. It is an ugly, nasty, no good disease. I have been lucky, and been able to somewhat keep it in control for now. I have not required any surgeries yet, and I hope that I never have to. Remission is the goal, and I have not reached it yet, but I aspire to get there and positively hope for it each day I feel "good". Good to me is another person's "sick" day. Imagine having a stomach virus daily. This is what I deal with. Severe stomach pain, nausea, constant diarrhea, joint pain, depression, irritability, headaches, heartburn, numbness and much more. My medication makes me more susceptible to getting sick, so I am constantly having to wash my hands, sanitize, and make sure I am careful who I am around.  I've learned to live with it and to accept it. I am so very thankful for the good days. I forget sometimes what life was like before this disease. I was never really a "planner". I was a "fly by the seat of your pants" kind of girl.

One of the worst things is the feeling of letting my kids, my family and my friends down. Flares or infections can come at any time without notice. It makes it hard to make plans and keep them. Vacations, weddings, big things are at risk. Having to tell my kids I don't feel up to playing or we have to miss out on doing something fun because I don't feel good. It kills me. Gavin knew the mom before the illness, Kynlee did not. She will always just know the mom who is sick. Man, my kids are so good and accepting I am so lucky. I thank God for that. Gavin is my helper and understands what's going on. Kynlee tests my limits like any 4 year old but shes also always asks me if I'm feeling OK. Both kids ask how my infusion was when I go, they are the best.

It affects my marriage because as you can imagine I'm never really in "the mood". I'm constantly sick, not feeling good, worn down and just plain tired all the time. I'm lucky because Austin is understanding and very patient with me. I feel ugly and bloated most of the time. He makes me feel good about myself and I am so grateful and lucky to have him.

Anxiety and depression. And this is a BIG one. I live in constant fear that anything I eat or drink will upset my system. I am constantly worried about being around someone who is sick or has been sick because if I get sick, it's 10 times worse for me than normal people. I am constantly having bathroom anxiety, and will not go if someone else is in the public restroom. I am always looking for the restroom right when I walk in somewhere. I have anxiety that people are constantly thinking, "my god does she ever feel good" or "she complains an awful lot" or "now what's wrong with her". I really don't mean to, I swear. I don't like going places or being around big crowds of people when all my life I have never been like this. I am constantly worried others are judging what I am eating or asking if I should have that. If I am feeling OK and able to eat it, then yes it's OK. I have anxiety that I am not enough as a mom, a wife, a daughter, a sister, a friend, and an employee. I always feel like I am failing and I could do better. Nothing is ever good enough. I wonder if I will ever get to live a normal life again without pain or symptoms. I often wonder will complications from this disease kill me and leave my kids without a mother. Is there something I could have done to prevent this? Why was I given this? When people ask how I am, most of the time I just say I'm OK to avoid people feeling sorry for me. The list goes on and on. I am working with myself and my family to come out of this negative place. It's hard. I have never been clinically diagnosed with depression but I know it's there. I choose to turn to my family to lift me up when I don't know exactly why I am sad or upset or hurting. There is no feeling like not being able to explain why you are hurting. Before my disease, this didn't exist.

I'm just pushing along, hoping everyone sticks in there with me. I am so beyond thankful for my group of friends and all of my family. I have an awesome support system. My parents and my sister. They are like no other. My angels.

 

-Ali

Life is a beautiful struggle

It's been far too long. I have had these feelings locked so deep inside of me for so long and needed to get them out. It is so therapeutic for me to sit and write out my feelings, I should have done this sooner than now, but that's life I guess. So much has gone on since my last post.The beginning of last year I was in and out of the hospital with my Crohn's disease. It was a really tough time, I was away from my family and I couldn't see my kids because I didn't want them to catch anything being up in the hospital. I was in there for weeks at a time, then I would come back home for a week just to turn around the following week and be up there again. It was so mentally and physically exhausting. There was a point in time where I wondered if I would ever get my life back again. Finally in March of 2016, I had my first Remicade infusion in the hospital and life started to turn around. I felt good, I was back at work and things were going great.

 

On June 8th 2016 we closed on our first home, and boy was that an amazing day. I had so many emotions. My husband and I have worked so long and hard to be able to provide our family with a house to call their own. We were all finally happy and in a place where nothing could stop us now. We adopted a 2 year old Puggle named Shay. We all fell in love with her fast, and she became the 5th member of our family.

 

 

Then in September I had the biggest most horrible scare of my life so far. My son was having problems with his leg. He was limping and in a lot and in pain. We took him to the doctor and he got x rays done. I remember getting the call on a Friday afternoon from our family doctor that he wanted my husband and I to both come in as soon as possible to discuss what they had found. I knew this was bad, my family assured me everything was OK, but I am his mother, I just knew. The doctor sat us all down and gave us the worst case scenario, and said this could be a form of cancer of the leg bone. The words hit me like a ton of bricks. I didn't hear much else. I kept it together and we went home. When we got home I dropped to my knees, begging God not to let this be possible for my baby. I prayed God would give it to me instead. My husband and I just sobbed outside knowing we had to call and inform our families of this possibility. The words wouldn't come out, all I could do was sob. All of our family and friends came over we all cried but kept it cool for our little guy. Later that night we went to Chuck E Cheese's with some of our dear friends and family so Gavin could have a fun night, and not have to think about what was going on. He knew, but I don't think he really knew how bad it could have been. I didn't want him to know. I didn't want him to be worried. I remember driving with him one day, and him saying to me, "Mom, you know, some people have really bad problems and have to have their legs cut off, and that's ok, because it makes them better and they do fine." It took everything I had to not break down and cry right at that moment at how understanding my child was, and how he knew no matter what everything was going to be OK.

The doctor wanted to order an MRI to get a better idea what was going on. Our appointment wasn't for a week. For a week I was beside myself with pure grief knowing the magnitude of this possibility. Was I strong enough to get through this? There's no way my baby boy has cancer. I had never felt this level of despair. The day of the MRI Gavin was so strong and went through it fine, he even got to listen to Twenty One Pilots in the MRI machine which helped take his mind off of the machine. We were told it may be a day or so before we get the results of the MRI but that our primary doctor would call us whenever he knew. We left and got something to eat, and went to my in-laws house to relax and wait for results. A few short hours later, I got the call. The doctor said they did not find cancer, but that Gavin had Legg-Calve Perthes Disease. Although I wish my child didn't have to have any problems with him, I was grateful it was not the alternative. I thanked the doctor and hung up. I literally fell to my knees crying with joy. I could barely talk. I silently thanked God. Then I announced to everyone that it was Legg Perthes and not cancer. The whole room lit up, and everyone was hugging and crying tears of joy.

Legg Calve Perthes was a possibility from the start, but our primary doctor didn't think this was the culprit because he was having pain in his knee area, and normally with Legg Perthes you have pain in your groin/hip area. Basically here is a run down of what Legg Calve Perthes is.

 Legg–Calvé–Perthes disease (LCPD) is a childhood hip disorder initiated by a disruption of blood flow to the ball of the femur called the femoral head. Due to the lack of blood flow, the bone dies (osteonecrosis or avascular necrosis) and stops growing. Over time, healing occurs by new blood vessels infiltrating the dead bone and removing the necrotic bone which leads to a loss of bone mass and a weakening of the femoral head.^[1] The bone loss leads to some degree of collapse and deformity of the femoral head and sometimes secondary changes to the shape of the hip socket. It is also referred to as idiopathic avascular osteonecrosis of the capital femoral epiphysis of the femoral head since the cause of the interruption of the blood supply of the head of the femur in the hip joint is unknown.

 

We were able to celebrate Gavin's 9th birthday in pure joy and happiness for sure the best birthday thus far. Gavin even got a kitten which he has asked for since he could talk. So then came Evee our 2 month old kitten who then became the 6th member of our family.

 

Gavin will have a long road to recovery. For the next 5 years this will be his life. He still limps and has problems with it every now and then. He goes to an Orthopedic specialist every 3 months. If his femoral head does not grow back, he will require surgery. Gavin is restricted from sports and some activities in Gym class. Gavin loves trampolines and has been wanting to go to the new trampoline park in town, but he is just not able to at this point. We are working towards to goal of someday being able to take him there.

These are the cool short he has to wear to have his X-Rays

Life is good again, I had some set backs with my Crohn's from time to time, but I seem to be back on track. Gavin has been doing pretty well, a few flares up himself but we are working through it with the help of our Doctors and Chiropractors. I have to believe God gave us both these issues so we could help each other and be there for each other. To learn sympathy towards others, and to stay strong for those we love. I have to believe I was given Crohn's so I could be a better mother in understanding, caring for and being able to sympathize for my child who has a medical issue. I was surely blessed with my son, so caring, understanding and helpful when I myself am not doing well.

Kynlee has been good, and is really growing up to be a wonderful little girl. She still has her sass, and she is wild as ever, but I love her free spirit and her wildness. She keeps me wild. I keep her safe. I decided someday I will be the "cool mom" and we will get this tattooed on each of us some day. She started dance class in January. She will have a recital in June. We are very excited!

 

 

 

 

 

 

Everything else is well. My husband is good, our family is good, my life is good and we are just looking positively into the future. I am so blessed. 

 

-Ali