Stages of grief… An *update*

They say there are 5 stages of grief. 1. Shock/ denial. 2. Anger. 3. Depression 4. Dialogue and bargaining. 5. Acceptance.

In May when I was diagnosed with Granulomatotis with polyangiitis (or Wegeners granulomatosis) I began mourning the loss of the life I *thought* I would be living. You walk around, just assuming you will live until your 90 something , you will do all normal things, watch your children grow, become a grandparent, etc. You don’t assume that all of that will be different or possibly not even happen. I felt a deep sadness when I started researching my disease and the shock took over. For me, it was hours of crying every single day, for weeks. It slowly turned into episodes of crying and now I can honestly say I only let that happen when I’m alone, usually in the shower and thinking about not being a mom to my 3 babies. I denied it for a while, thought possibly the doctor was wrong, maybe he missed something or maybe he mixed me up with someone else. I so badly wanted it to be someone else. The anger for me has been a combination of … angry at the disease itself and prednisone induced anger. My overall personality has changed because of this “devils drug” … My temper is shorter, my outbursts are more frequent, my emotions are all over the place, and my hunger… Well that’s in a whole category of its own. The prednisone is a steroid that I *have* to take and it gave me a “moon face” and is the reason for a 40 lb weight gain since August. (Just writing that brings tears to my eyes. ) I’ve struggled my whole life with my weight and now, every morning I have to put 4 pills in my mouth that I KNOW will cause me to gain weight and become so hungry I swear I can’t control myself. That brings me to the next stage, depression. I feel sad that I don’t recognize myself in the mirror, I feel sad for everyone around me that has to look at me getting bigger and knowing there is really nothing we can do about it until I taper off the meds. I avoid mirrors EVERYWHERE… I avoid the microwave, the car windows, any place that I can see my reflection, I run from. The tiredness brought on by the disease itself can be overwhelming and I feel like little things take so much out of me. Thanksgiving day I hosted and had my whole family over. My husband and I did all the cooking and for 3 days after, I could barely get off the couch. It’s hard accepting this and feeling like I am 80 at 26 years old.

This all sounds so negative, and really it has been. I haven’t been positive about much of it. This past week my husband and i went back to the Cleveland Clinic in Ohio to see my specialist. We left there with something that we didn’t even know we had been so desperately searching for… Hope. I finally feel this weight lifted and I see a light! She said I am not in remission and the meds I’m on now are just not doing it. She is requesting that I do infusions of rituxan and then my maintenance drug (which I will stay on forever) will be imuran. The infusion will be at a local oncology center and will last anywhere from 6 to 10 hours. I will go through 2 rounds and fingers crossed… That will put me in remission! After all is looking good, then I can taper off the steroids (my ultimate goal). I am feeling so hopeful and so excited for what this can mean for my family. Maybe some normalcy… That is what I crave right now. I want to feel somewhat like my old self again. I have not felt well for an entire year, and now I can honestly say that I think 2014 will bring some more hope and more health! So here is to rituxan being my answer and positive good days ahead! That is my update, it’s been a while, and who knows when I will write again but for now… I had to share some uplifting news!

Xoxo

Tomorrow I begin treatment. These past few weeks have been extremely difficult and in the same sense given me so much comfort. I am scared for what my future holds, I fear not living the life I had hoped for, or not being able to give my children everything they need in a mother. My doctor has been great, he is so understanding and knows the right things to say. He said, “I know you are scared, I know you are overwhelmed, but that will do nothing for you. You have this disease, there is nothing you can do to change this. You just have to get better. That’s your job, get better.”  It was simple, but true. Gods plan was this, I may not know why right now but this is what I was given. Now I get better…

The most amazing thing can happen when you are diagnosed with something so serious. I would have never known this, had it not happened to me but within days of being diagnosed, I have been prayed for by thousands (yes thousands) of people. Word spreads quick, and people want to help. The best way you can help me, is to pray for my family and I. I feel cared for, I feel strong, I have such an amazing support system that just makes me feel like this is nothing, I am not alone. I was sitting in the hospital on Wednesday, surrounded by sick people and I was at my all time low. I knew this chest scan was going to tell the doctor just how far this disease has progressed in my body. That fear is very real. I left there and came home to my beautiful family. My husband has been nothing shy of amazing through this whole thing (this does not surprise me). He does everything he can to make me smile, to make me forget what is actually going on and at the same time, he knows exactly when I need to be comforted. He’ll see that I get quiet for a second and come up to me, put his arms around me, and say, “we’re going to be alright”. I don’t have to do anything by myself, I have support and love everywhere. Tomorrow morning he said hes going to make a really big, delicious breakfast before I officially begin my treatment. We picked up my bag of medications today and the pharmacist gave me all of my warnings. He wished me luck and said, he would pray for me. The combination right now will be 4 tabs ( 6 in one month) of methotrexate, 10 mg of prednisone, folic acid daily, vitamin D once a week, 600 mg of ib profin, and my multivitamins. I also have zofran as needed. After 4 weeks of this treatment, we will retest my blood and urine and determine if I will continue or move to Cytoxan rather than the methotrexate. The doctor wants to avoid Cytoxan if we can, he said it will likely damage my ovaries (no more babies for me any way) And possibly have harsh side effects on my lungs.

Wish me luck tomorrow that I am not sick all day and take this medication well. I feel positive. I read this quote the other day, I wanted to share…

“An incurable disease changes your life, often for the better. You learn what’s important, you learn to prioritize, and you learn not to waste your time. You tell people you love them.”

xoxo

Easier said than done

I woke up this morning wishing yesterday never happened. For the past 4 months I believed I had rheumatoid arthritis. I even had a doctor tell me I had it and prescribe steroids (which, at the time I did not take). A week ago I met with my new Rheumatologist and fell in “love” with him right away. He understood what was happening to me, he sympathized, he was smart, AND he said, “I’m really thinking this is not RA”. What!? Not RA? Then what has the past 4 months of serious joint pain, extreme fatigue, and swollen hands been? Well, after extensive blood work and a phone call requesting me to come in immediately led me to what we now believe is our answer… Wegeners Granulomatosis. An extremely rare, autoimmune, blood vessel disease with no cure. He told me we need a few biopsies to make the official diagnosis but for now, he’s pretty certain. I went home yesterday and started researching what this unknown disease was, why my doctor told me that if I do have this, he’ll remember my name forever (not very comforting coming from a doctor). After reading about the basics of it, I told myself to just STOP… Stop panicking, stop crying, stop reading! If you know me, you know that’s just not possible. When I found out I “had RA”, I bought books, researched every minute of the day, asked strangers about it, and fully read everything I could get my hands on about it. So, in order to stop reading about Wegeners it would take a miracle. Most people would just NOT read but for me, it’s easier said than done. 😦 

Here we are, the next day and I continue to research. I started my steroids this morning, fully against what I had originally wanted but after realizing how quickly this disease can progress, I just don’t have the time to wait. Before 1970, if you were diagnosed with this disease they gave you 5 months to a year to live. Now that’s not the case if it is caught quick enough and treated aggressively from the beginning. I guess now I just have to hope we can get a diagnosis quickly and start treatment. I will pray that it has not started effecting my lungs and kidneys yet and that I have a positive prognosis. All I can think about is my three babies, my amazing man who has been holding my hand since I found out, and my family whose hearts are breaking knowing the challenges I have ahead of me. God give me strength. I can do this, I must stay positive. 

xoxo

It’s a beautiful thing

Oh what a beautiful, wonderful Mother’s Day it has been. I woke up to the smell of a delicious breakfast being made, all children downstairs playing nicely, and a sweet card that included a mini scavenger hunt. I followed all my clues and it led to a beautiful assortment of jewelry picked out by my hubby. I could not ask for anything more. The way I am treated on a daily basis is enough of a gift in itself. I told my hubby last week that I truly did not need anything for Mother’s Day except a nice breakfast made by him (he’s a great cook!). He appreciates what I do, he loves the mother I am to our children, and I nail ways let him know what he means to me. The other day, my dad actually told me “he’s too good to you”. I guess he’s insinuating that his own daughter is not good enough for him?! I of course know he is joking, and it gave me a good laugh but that is HOW great my man is. I lucked out… The day I married him, I had no idea just how lucky was. I think that my parents and my grandparents have taught me so much about marriage and I really hope that we can pass that down to our children. For us, communication, honesty, and most importantly respect are the fundamentals of our marriage. That’s what works for us. Of course every relationship is different, what works for me might not work for another. For example, we don’t go grocery shopping without the entire family. We have always made it a family thing, and now as a family of 5 it is a little more challenging but it is so important to us to do something all together, working together every 1-2 weeks. But, some people might think that is crazy and would never even want to do that as a family. I guess, you just have to find what works and make it your priority to keep it up.

I truly hope that every mom, soon to be mom, step mom, grandma, Godmother, and mother “figure” are all treated wonderfully today and everyday. What we do is not easy but it is the most beautiful thing in the entire world, bringing a child into this world and raising it to be a grown, successful human being. Happy Mother’s Day!

xoxo

I’ll still wear my smile

Last week was a challenge and this week seems to be proving the same. I feel defeated. I feel pain. I feel anxiety and some sadness. I do still feel hope and determination. I am reading a book about my RA and it is teaching me to stay positive and that changes will be necessary. I won’t wake up magically feeling great one day, I just pray for normal. I want to be able to get up in the morning and hold my daughter without cringing because my wrist is throbbing. I want to wake up and not have to be reminded within seconds that I am battling a life long autoimmune disease. I am doing the right thing, I am eating right, taking my vitamins, staying active, losing weight, and I guess I was hoping to be feeling better than this after 2 weeks of serious changes. No red meat, no sugar… I would be lying if I said that it has been easy. I am 5 lbs down, so that is encouraging. I am hoping to lose 30 total within the next couple of months. I have been told that losing weight will help my RA because its less weight on my joints so I am staying focused. I will NOT let this take away from my quality of life. (At least that’s what I’m trying to tell myself).

It is a new week though, so I am hoping to make it a good one. My hubby is away for the week, so that always makes me sad. I often tell him that when he’s home he should stop being so helpful and treating me so great because then I wouldn’t miss him so much. I was obviously always kidding though, he’s just too good to me that when he’s gone I am so miserable. Oh well though, I must continue to keep the household running smoothly and keep the children happy. I think we will start yoga this week. I want to do something active that I can include the kids with so I figured this might be our answer. Bub and Bean are both sick, just adding a little bit of the stress this week. I am hoping they are better by Friday so I can leave them with my sister when I go meet my new rheumatologist. 🙂 For now, I’ll just stay positive be repeat to myself, over and over, ” I can get through this, I will get through this.”

xoxo

A day in the life

This is how it went… (Average day)

woke up

got dressed, did make up, hair, etc.

woke Bub up, got him milk and muffins, then got him dressed

Fed Mush, changed diaper

Brought Bub to school

came home, woke Bean up, got her breakfast, then dressed, made hair appt for myself

Brought sister to work

Drove by some houses my parents might be interested in buying

came home, gave Mush a bath, played and read books with her and Bean

made lunch for Bean and I , gave Mush bottle, changed diapers

Did 2 loads of laundry, emptied dishwasher, cleaned living room and paid bills

put girls in the car, picked up sister from work, picked up Bub from school

came home, folded laundry, cleaned bottles, changed diapers, gave snacks and milk to older two

gave Mush a bottle, started dinner, ate dinner, cleaned table, loaded dishwasher

ALL of this and it is just 6:20 pm. 🙂 I didn’t “work“, right? It looks like I was a chef, chauffeur, cleaning lady, accountant, mom, entertainer, librarian, personal assistant to 3 mini people, full time nanny, nurse (when Bean needed bandaid for her “boo boo”), and a wife 🙂 Oh and I didn’t get “paid” or get any lunch breaks either. I wouldn’t trade this life for ANY one else’s, I am so blessed to be able to be a stay at home mom. But my role is usually not acknowledged by most people, since I don’t technically work. I just laugh 🙂 So to any stay at home moms who are feeling unappreciated, make a list of what you really do every day, it will make you feel better.

Xoxo

One week down

I have officially made it one week on this new “lifestyle” I am attempting. I feel good! My RA is still not good but overall, I feel good. Making these changes feels great, I feel like I am just making my family healthier. For example… We BBQ A LOT. We love cooking on the grill, cheeseburgers, chicken, steak, brats, hot dogs, etc.  This past weekend I suggested we make turkey burgers instead of beef. Every one was a little hesitant but we did it and even better, we loved them! 70% less fat and its not red meat, so I can eat them too. 🙂 I have cut out all the junk, no cookies, cupcakes, chips, or fast food. We are all taking vitamins and eating lots of fresh food. My original plan this weekend was to lay around with the family and cuddle, watch movies since we had storms. Instead, I got the family out in the rain and we headed to Nashville and did some walking at the mall and ate at Rainforest cafe (turkey wrap for me!). We finished the weekend by doing tons of laundry and cleaning the house (which we do as a family every weekend anyway). I don’t mind sitting around and watching tv and relaxing. But I CANNOT do that if my house is a disaster. I have to have the entire kitchen clean, no dishes in the sink, vacuumed living room, toys picked up, and all tables cleaned. My hubby always gets frustrated when we are going to watch a movie because he knows I have to go through the whole routine before we can actually watch it. I just feel too guilty of I’m sitting and “doing nothing” when everything is a mess around me.

Now that I have completed a week of positive changes, I feel more positive in general. I know I am doing good things for me and my family and that makes me happy and gives me motivation to continue. However, Bub is turning 4 in 2 weeks and I WILL have cake on his birthday! 🙂 Guilt-free too! Next week I go meet my new Rheumatologist for the first time. I am really anxious and nervous. This doctor will become a member of my team to get my RA under control. He is the only one in my area, so I REALLY hope I like him and his ideas. That’s what’s going on here in my little world, nothing too exciting but all positive. 🙂

xoxo

Rain, rain DONT go away…

I have a confession to make… I am obsessed with storms! I love the rain, I love looking at the dark storm clouds coming in over the fields down the road from my house, I love the sound of the rain, I love checking the radar every few minutes as it updates. I don’t know what it is or where it started but it just makes me happy and brings me peace. Here is the map from a storm we had last week… So fun! 🙂

 

 

Just the other day (after this storm) , Bean thanked me for “turning the thunder off”. I have to admit, I love that she thinks I have that power and control such things like thunder. Her little mind is so innocent, I just smile when I hear her and Bub talking… They are so creative and have the funniest perspectives on things. Anyway, we are expecting rain this whole weekend and that makes me happy. I’m looking forward to cuddling on the couch and watching movies while it pours outside. Enjoy your weekend!

 

xoxo

Everyone has a story

I often find myself looking at other people and wondering what their life is like. I mean, random people at the grocery store, parents at my sons school, neighbors… Is that weird? We all have a story, we all have something going on in our life that not everyone knows about. I want to just randomly go talk to people and find out what we have in common, or their thoughts on raising children, etc.

I was never like this though. I think a combination of two things has changed me drastically… 1. Having children (changed me in every way) and 2. Moving to TN (changed my views on the world). My children have made me more outgoing, more understanding, more compassionate, less judgemental, and less “busy”. I don’t care if others are criticizing what I am wearing or what purse I am carrying… I really don’t have time for that but I have also learned that hello.. MUCH more important things going on around me than that. Tennessee has shown me that people ARE good! I feel at home here, I feel happy, and like this is where I belong. Sadly, I don’t think I felt much of that growing up on Long Island. I felt judged and like everything was a competition on who had what and whose was better. Here… I am me and I enjoy the little things (the southern accents make me smile too ) 🙂

OK, well back to what I was saying before.. I want to just randomly know people’s stories. I don’t actually just go talk to strangers, I just like daydreaming about what their life might be like. Sometimes I think that people don’t take into consideration what other people might be going through. I get mad when I’m driving and someone is driving right behind me. Thats when I have to remind myself, maybe they are rushing home because their child is sick, or they have to go to the bathroom really bad! 🙂 Whatever the situation might be, it is important to keep in mind that they have their own story, we don’t know what goes on behind closed doors and maybe they aren’t driving up your butt just to piss you off! Well, that’s my random thought for the day… Now I am off to feed Bean (middle child) lunch and give Mush (baby) a bottle.

A Healthy Family

“Today is the first day of the rest of my life” … I’ve always loved this quote. It’s true and holds a lot of strength. Powerful. Meaningful. It gives me motivation too. My RA has been getting worse and each morning I wake up wondering what I can do to make tomorrow a little bit better. So today marks the first day of really making some changes to my diet and adding some natural remedies that will help with inflammation and joint pain.

My husband is an extremely active person so he motivates me to be more active. He eats well, takes vitamins, works out regularly… So I am hoping I can get on the right track. I don’t want to do this just for my own health, but for my families health in general. I have the fridge stocked with fresh fruits and vegetables on a regular basis but now I want to eliminate the bad stuff. This past weekend we went on a family “nature walk” and it felt great to get outside, as a family and do something good for all of us. Every weekend we are going to try to do something fun and different to bring us closer to living a healthy life. I think that a combination of diet, vitamins, being more active, and lessening my stress level by spending quality time together, maybe then I can feel better. So, wish me luck on my journey!

xoxo