confused girlWell…that really was the question. Sorry I have been seriously among the missing. I have been reminded by many that my last post was dramatic and then, I stopped posting. Yes! I am a drama queen…insert tiara on my curly head here, but…in this case…it truly wasn’t intentional. You know my life is bat shit crazy when it was too much to even tell you about it, so…i just kept it on the down low. But, I’m back and better than ever! I missed you all and I hope…you missed me too!

I really don’t know where to start, so in typical Joey fashion, I will just blurt out what comes to mind first. In October, our family grew by one. A beautiful, intelligent red haired, amazing little girl! It was an exciting and very emotional day. Most have nine months to plan for a new lil one but not in our house.

.red hair baby

If you haven’t figured it out yet, our house doesn’t exactly follow the rules of anyone’s norm. So, I woke up on October 24th with a family of 4 and went to bed on October 24th with a family of 5, no labor pains, no NEW stretch marks (don’t even get me started on that topic), a bit of a headache but a heart of enough love to take on an army. No, I didn’t have a baby. That would be completely insane and with all the meds I am one, would probably have 17 arms and 6 eyes. I can say this because it is true. Our sweetie pie, Kelsey, Tyler’s girlfriend of 4 years (since 8th grade and they are graduating from high school in 2 months) moved in with us. I won’t go into the reasons why some family issues made this a great option for her and we were more than thrilled to welcome her in. But let’s be real…you’ve read my blogs…wasn’t she already a member of our family? Like I said, I’m a drama queen, I like the build up! While we are on the subject of Kelsey, I am proud to say she was accepted into a very well respected and hard-to-get-into nursing program and will be starting in the Fall and we are so proud of her!

Tyler is doing awesome. He and Kelsey will both be graduating in June. I can’t believe it! Where the hell has the time gone? We’ve planned a really nice party for them and I can’t wait to celebrate their accomplishment!  I can’t believe it! Tyler just bought his first new truck and I am super proud of him! Tyler and Kelsey have their senior prom on the 14th and I will post pics from the photographer as soon as i get them. Her dress is gorgeous!

Jake is in 11th grade and busy as ever. And taller than me. It is so odd that my babies are all grown up and that I now have to look up to them. I love my sons and I feel so blessed to be their mom! Jake is going to the prom in a few weeks with his new girlfriend, Liz .It took him forever to let me meet her but I finally got to and she is really cute and sweet. I’ll post prom pics as soon as I get them.

Back to tubie or NOT tubie? So the answer now it NOT! That’s right! You read correctly! I had my tube pulled the day before Thanksgiving. It was one of the most difficult decisions that I have had to make. Why did I do it, you ask? Great question! There are many reasons. I will try my best to explain. These are not in any order of importance as all of these issues played a part in my decision. I had been having a lot of issues with my tube, care of, issues with granulation tissue and pain and being that my tube was placed inpatient, I really didn’t have a point person “on the outside” to help me with the issues. This left me doing a lot of hunting for answers and googling which is scary when you consider a GJ feeding tube is a REALLY big deal. I felt bad for my rheumy trying to figure it all out. She is amazing and I love her but GI is not her specialty. I started having issues feeding and was unable to successfully feed for almost 3 weeks and was in and out of the hospital being treated for severe dehydration. I was able to drink small amounts of fluids but not enough to keep me hydrated. Even with the small amounts of fluid, I was aspirating. To top it all off, my mental well being was suffering. Through the years of suffering with scleroderma, I am pretty proud to say, I have dealt with my ups and downs. I very rarely feel depressed. I handle it. I am by no means saying that I have NEVER felt like giving up. I would be a big fat liar! I have my moments/days/weeks that I feel hopeless. I try to mask it the best I can so that my family doesn’t have me on a suicide watch. But in all honesty, it is impossible to go through life being in pain and exhausted everyday without these feelings. I made the decision that I would try to eat selectively, once a day. I was able to do it. Turns out I could eat one very small meal, at the right time of the day, and the right kind of easy-to-digest food, sleep practically sitting up and survive. I did this for about 2 weeks. I still have  gastroparesis. Nothing has changed. It takes me about 15 hours to digest the small meal that I eat. I get full almost immediately. But, for me personally, this is what I needed to do – both physically and emotionally. Not everyone can make that change. And I am not at all recommending that. There are plenty of days that I second guess my decision. But I take comfort knowing that in the worst case scenario, A tube can always be placed again.That was a mouthful! I guess the kids aren’t the only ones graduating…

I’m a Tubie Graduate!super tubie

Other than that, things have been good. Mom is still here. She is her own bit of crazy. I really need to have a blog a week dedicated to her antics. It should be a vlog. I should follow her around with a video camera. You would pee your pants! Anyone that knows her says she should be her own sitcom! Trust me. Some network could be making a killing out of her and the best part if, she isn’t trying to be funny! I will put that on my list of blog subjects – Chatty Cathy. Look for it soon. I’ll tel you about the story when she brought me for an outpatient surgery. That is a real treat!

I went to see a dear friend yesterday in the hospital. She has had scleroderma for almost 19 years. She had a J tube placed today. We talked a lot about the process and what to expect after the tube was placed. I offered her all of my modified backpacks and the best advice I could give. She told me she always enjoyed my blogs. She used to message me when I didn’t blog and asked if I was OK because I hadn’t posted a blog. I needed to blog again for her. So, my dear Gigi, this is for you!get-well-soon-greeting-card-lettering-text-44403242 (1)

Rest and feel better soon!

Tim and I are enjoying being less than traditional newlyweds. Luckily, he has been my friend for many years. He knew what he was getting himself into. Poor crazy man! And he still married me! Go figure! The kids tease us and call us old people. We rarely get time alone. And nights that we are alone are typically spent watching a movie at home on the love seat followed by falling asleep in the same spot. We are wild and crazy like that! He is my rock, for real. I feel sorry for those going through chronic illness alone or without a supportive partner. I am blessed beyond beyond belief with a wonderful husband, amazing children and a mother (who is totally a one-woman comedy show) that would give up her life for any one of us! I have extended family that even though I don’t see them everyday, I know they are there and that makes me happy. I am blessed.

Although chronic illness sucks, I wake up everyday. Upon waking up, I cough for an hour. But, then the coughing stops. I don’t move fast. But, I am able to move. I am in pain…everyday. I am tired…every minute. But…I am alive. And for every day I open my eyes, I am thankful for another chance, even if it means to cough, to be in pain, or to be exhausted. I am alive. I am blessed.

Sorry this blog has been more fact than my craziness! Next will be more crazy! Promise!

Trust me when I tell you, my world never runs out of crazy…NEVER! crazy