Joey, Just Joey

Joey, Just Joey

You really never know… — May 12, 2016

You really never know…

/joeylynn28/8 Comments

loss

Have you ever really stopped to think to yourself…what if? What is today was the last time I saw this person? Or what if those were that last words I said to…whomever? I know…deep thoughts! Today was a sad day. I went to a funeral of a very dear friend’s grandmother. Funerals are always awful…duh! But this one was really sad to me. I didn’t cry, I held it together and even cracked jokes to make my friend and her family laugh. It’s what I do. Can I tell you? I DO NOT HANDLE SADNESS WELL! I am THAT GIRL! I can go full stand up comedy hour. Don’t get me wrong…it’s not fake! I am that funny…If I don’t say so myself! It is just NOT APPROPRIATE TIMING!  I just can’t help myself. I do not like to see my loved ones sad. Hate it! Every bit of it!

So, last night as I was mentally preparing to head to Delaware (my hometown – I’ll get more into that in future blogs), my mind races with memories of my younger days in Wilmington. The church that the funeral was held in today was actually directly across from the house I grew up in. It was being held in MY CHURCH! I used to love to listen to the church bells at night as I fell asleep. It was always very comforting .The city has changed so much. But somehow, being in that church, time stands still. I digress. In my mind, I was imagining how I would somehow love to walk through the house I grew up in.I moved a lot as a child because of my parents divorce. This house we lived in for a while. I felt grounded there. I had a lot of memories there. I wanted so badly to just see the inside once more. But, how in God’s name would i possibly do that? Was this even realistic or were my night meds doing all the thinking for me? I imagined every angle of the story…or did I? Several scenarios crossed my mind: 1 -No one would answer the door (probably the best case scenario),2 – A little old lady would answer and offer tea and cookies and we would reminisce about how Wilmington used to be, 3 – I would enter the house and never be seen again (worse case scenario but probably most realistic). Well, As I drove down the block approaching my old house the unforeseen scenario 4 hit me square in the face…the house was no longer there – torn down. I never even thought that possible. I guess the last time I drove by and saw it was the last time I would ever see it. Thankfully, I have my memories. I pray that as my mind has its moments of confusion and fogginess, I don’t lose the memories I hold dear. Until then, I replay them in my mind over and over. But, really though, who thinks of knocking on a door? Talk about a cloudy mind! I must be losing it! Thank God it was torn down! I probably would have never made it home today! I think I may need a baby sitter with me for now on. I have a Med Alert necklace at home…maybe a need a tracker implanted in my neck. I joke – but my mom reads this blog. If you know my mom, within about 5 minutes of reading this line, she will be googling human tracking devices. This is my life!

chip tracker

This evening, I got home and got a call from my own grandmother’s nursing home. She had a small scratch on her back. They have to call and notify me. I am happy they do. I will go and see her tomorrow to make sure she is ok. She used to be the most active woman ever. She taught me how to jump rope, play jacks, play cards (rummy 500) and so many other things. I loved spending time with her. Its sad. She had one son. My father. He doesn’t answer the calls from the nursing home. So they call me. It is so sad for me to put myself in that situation, with me being in a home and my sons not taking their calls. It really breaks my heart. All she did for him his whole life, and now she can’t “do” for him anymore, so she is “kicked to the curb”. Can’t even answer a call from the nursing home for a scratch or to approve a flu shot or to go for a visit. It turns my stomach. I will go and see her. I will tell her that I am 44 years old about…44 times and smile each time. I will tell her that Tyler and Jake are 16 and 18 about the same amount of times. She will, in the sweetest way ever, tell me that she is glad she is younger than me. And when I ask, she is usually just 16. That must have been her favorite age.

Health wise – I am ok. I am very tired but doing ok. Some new meds added to the regimen that are kicking my ass. But Scleroderma is known to do that. My GI is acting up again. My girlfriend mentioned tonight that this is when it started last year. I never even thought of that. Thank God for all of my favorites! I don’t know what I would do without my amazing friends! This friend in particular actually sat in the hospital with me last year and took notes for a whole day from all of the doctors and specialists so that everyone would know what was going on because I was so out of it, I had no clue! I heart you TE! The tubie option was brought up again – I declined. I am going to do new Gastric Emptying Studies. For those of you out of the Sclero world – The GES is a nuclear medicine study that involves drinking water and then solid food  (typically scrambled eggs with toast) with radioactive material in them and then tracking how long it takes to move through the GI system. Because I have gastroparesis, this test usually shows huge delays. We are now considering a gastric pacemaker instead of a tube. I’ll keep you posted.

On the home front, Jake and Liz had prom this past weekend – so freaking cute!!! Tyler and Kelsey have prom this weekend! LOVE LOVE LOVE!!! You know I just eat all of this up! I love it! I will post pics as soon as I get them all back from the photographers. Kelsey had a facial yesterday and hair and makeup on Saturday. It’s so different having a girl around the house. And I wouldn’t change it for the world! I have the best of both worlds! Then, onto graduation and the graduation party in June! Busy times for this family but all very exciting! I am one crazy, exhausted but extremely proud momma!

So, what was my point to this blog? Seems disjointed? Well, my point is loss is everywhere and is never easy and you can never be prepared. It will always hurt, even if you think you are prepared, it will still hurt. I watched my friend and her family mourn today and it hurt, they were hurting and it hurt me to see that. They lost someone that was the matriarch of their family. No preparation can ease that pain.

I thought I would see my old house today and maybe even in my crazy ass head, go inside. That didn’t happen. The whole damn house was gone! If I had know the last time I saw it, I may have stopped and taken a picture, looked a little longer.

My grandmother has lost her mind – just kidding. But, she has lost her memories. And that scares the hell out of me. That is my biggest fear. I never want that to happen to me. She does remember me. Which makes me happy. But, she has forgotten more than she will ever remember. In the process, she has lost her son. Not because of anything she has done. Not at all. But I guess in the process of growing older. That is heartbreaking. And the sad part is, she does know that he is not around.  And that is even more heartbreaking.

My disease has taken so much from me: my health, my job, my independence to a certain degree, my energy, my smoking hot body – haha – who am I kidding? I didn’t have that before sclero! I can dream, can’t I ???!!!!, some of my cognitive ability and so much more. BUT….

IT CAN NOT TAKE AWAY – my love for my children, my family, my faith and my friends! And that is what keeps me going – EVERY DAY!

Love and Hugs to All!

Woohoo! My Life is a Blog! Continue reading →

Tubie or Not Tubie? Hmmm…. — April 25, 2016

Tubie or Not Tubie? Hmmm….

/joeylynn28/8 Comments

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!

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

 

 

 

 

Wait…where have I been? — October 19, 2015

Wait…where have I been?

/joeylynn28/7 Comments

I'm back

What can I say? I have been a big, huge slacker! Nah! Actually, I have been very, very busy partying! Yup! You heard me correctly. I am not usually much of a partier. Actually, I NEVER party! But, let me tell you, THIS chic has been the life of THIS party, really…the funniest one at the party, the loudest one at the party, the best looking one at the party! How can I be so bold? I’ll tell you…I was the ONLY one at the party! That’s right! I have been busy hosting and attending the biggest ever PITY PARTY of ONE for ME!

I NEVER feel sorry for myself. I never allow myself to go there. I know I have an illness. I know I wake up everyday feeling like crap. For whatever reason, I hit a low and I couldn’t pull myself out of it. You know, I do know what happened. I’ll tell you. You all know I have a feeding tube. Well, I started a new immunosuppressant drug and was able to tolerate a very limited and very small amount of food for a very short period of time. If you haven’t figured it out yet, I like to dream BIG! In that small period of time, I had myself convinced I would be able to eat again and have my tube removed. As a matter of fact, I could almost visualize having it removed. Even googling how to take it out and dare I say? Remove it myself? I would never. Or would I? I was picturing my stomach without the stoma and what the scar would look like. How easy it would be to get ready without the tube and gauze. How nice it would be to live without the pain of granulation tissue. How wonderful it would be to dress without hiding this dangling tube. How wonderful it would be to go out to eat with my family or friends and order something other than the “broth du jour”. That did it for me. That was it. I psyched myself up for something that wasn’t going to happen. I know better than to do that. I guess I was being a rebel.

I remember going to bed the night before all of this happened. I was feeling exceptionally bitter and rebellious. I didn’t want to wear my nasal cannula with my oxygen, I didn’t want to hook up to my pump to feed, I didn’t want to have scleroderma anymore, I was fed up with it all. I guess that is normal when you have a chronic illness. I am told by my friends that I should allow myself to feel all of these emotions. I am not good at allowing myself to feel sympathy for myself. I guess that is why once my pity party started, I had a hard time pulling the plug on it since I had never gone there emotionally.

So, the party is over and I am back. I feel like myself again. I am 100% back on the pump. God made that decision for me very clear after a very bad GI week. It was as if God said, “Look here Missy, don’t even think about taking that tube out!” I’ve accepted it…AGAIN, for now. I am still dealing with some dehydration issues but I am working through them.

Since the last time we talked, we had our local Stepping out to Cure Scleroderma Walk in Philadelphia. This is our 6th year participating in the walk. TEAM JOEY was very much present again this year and again won MOST WALKERS!

Check us out! Not everyone made it into the pic sadly. But, they will be in there soon. Thanks to photoshop and my talented hubby.

team joey 2015

And, we raised over $8100 so far this year. I love my friends and family that support me and the Scleroderma Foundation each year! Team Joey Tshirt 2015

Back to my absence, I hope you guys haven’t given up on me. Thanks to those that reached out to me in concern due to my silence. Christmas will be here before you know it, my youngest son will be getting his license in December and Tyler and Kelsey will both be graduating high school in June (and yes – I am already planning the party – Proud Momma!)

No more partying for me. Next time, I promise to invite you all!

Woohoo! My life is a blog!

Everyone is fighting something… — September 28, 2015

Everyone is fighting something…

/joeylynn28/14 Comments

be kind

Last week was a whirlwind. No matter how many times I clicked my sensibly stable, yet really cute bright pink Skechers, I was still in a doctor’s office, in traffic going to or coming from a doctor’s office or waiting for tests. Glad that week is over. I have another one today plus whatever that one brings. FIngers crossed for a light week.

It always amazes me in my travels that I meet people in similar situations as myself. I don’t even know how the conversations come up sometimes. At the pharmacy, the sweet woman I usually deal with has a sister fighting breast cancer and I found out that she herself is a cancer survivor. At my younger son’s school, I met a woman who had been through so many surgeries I think she lost count. In the line at the grocery store, someone saw my tube and asked me about it. She did not have a tube herself, but was surely fighting her own battles. Please keep in mind when dealing with your friends, family, coworkers, strangers…everyone has a battle they are fighting. It may be financial, medical, marital, family related….be kind. Sometimes, your kind word could be THE words to make a difference in that person’s day or life even.

Here is what my week looked like last week. My pulm tests showed slight decrease in function. This seems to be the trend in my PFTs, always on the decline. As for my annoying cough, she thinks that my Sjogren’s is progressing further down my trach and the dryness is causing the incessant cough. I am now on an inhaled steroid to see if that helps. Personally, I am not seeing any difference after a week. The next step is to try a salagen. This is a medication that causes your body to produce saliva. I know my eyes, mouth and now trach are dry, but the thought of this particular medication makes me want to gag. Especially since the doctor says that some patients feel like they are drowning when they take it. BLAHHH….Gross! That’s the way I’ll go. After all the BS I’ve dealt with, I’ll drown in my own (wo)man made saliva. What a epitaph that would be.

Here lies Joey Lynn,

Full of Wit,

Too bad she went,

and drowned in her own spit.

I kid. Let’s hope that’s doesn’t happen.

I saw the Sleep specialist who was also a pulmonologist as well. I liked him very much, despite the fact that after gathering all of the necessary info about me, he looked at me and smiled and simply said “You’re weird”. I knew I like him right then. He was honest. He explained that my symptoms are opposite of most people’s symptoms and that I am more complex. Ha! Story of my life since I met Scleroderma. Turns out during REM sleep my pulse ox drops to the low 50s…not good. So, now, I sleep on oxygen. It seems to be helping a lot and the amazing thing, the cough stops when the oxygen is on. Good news right! I am calling this portion of my blog – the oxygen tank is half full.

I am still struggling with not eating “real food”. I am torturing myself trying to eat, knowing the end result will be my face in the toilet bowl. It is depressing, exhausting and a painful reminder of the way this disease is slowly stealing my life from me, one freedom, one organ at a time. I am a strong person, hard headed. I don’t like to give up. And in this case, giving up is the right thing and the only thing to do. But, it is a struggle for me. I want to believe what everyone says – “You look great”. I want to believe that I am healthy. I want to dress like a normal person, hiding my feeding tubes, covering the imperfections on my face and hiding the broken blood vessels from all the vomiting. I want to still fit in. I don’t want to be the tired one that can’t walk far distances. I don’t want to embarrass my family with my canes or walkers or worse yet, my wheelchair. I want to be the old me. The one that went at 150 miles per hour all day, every day, not the one that moves at a snail’s speed and even then must break for naps throughout the day. The naps are more frequent than they were before. And much more critical to my day. I can feel myself slowing down and I don’t want to. Each day, I lose another piece of “me”. It is not obvious to most, I hide it well. But, if you have known me for a long time, and you look real close, you will see through the make up and the smile, and the “I’m Fine’s”, you will see what is left of the me you used to know.

Next week is the big Scleroderma walk in Philadelphia, The Stepping Out to Cure Scleroderma walk is on Sunday, October 4th at Lloyd Hall on Boathouse Row in Philadelphia. You can register online if you would like to walk with me, my family and my friends. If you are not able to walk with us, but would like to donate, you can do that on the website as well. The link is http://www.scleroderma.org/goto/joeybarlow Thanks in advance for any help!

So if you are fighting the Scleroderma fight, or any other fight, you are not alone in your battle. My prayers are with you.

Woohoo! My life is a blog!

Let the specialist games begin! — September 21, 2015

Let the specialist games begin!

/joeylynn28/8 Comments

Lady sees door sign next to ENT: 'Heads, Shoulders, Knees and Toes'.

Happy Monday! I hope you had a great week. Me you ask? Survived a week of a broken fridge, a water logged phone and sleep deprivation but I am still standing and still smiling. Today starts a long line of specialist appointments in the city of Philadelphia. And for those in the area, the city is buzzing with preparations for Pope Francis’ visit this weekend. So, travel will be a real treat! Maybe I can hitch a ride in the Popemobile. You think so?

. pope

Today starts with PFTs (Pulmonary Function Tests), followed by a visit with my pulmonary doctor. I have to admit I am concerned about these appointments due to recent lung issues, excessive dry cough and shortness of breath. In addition, I had that sleep study done a few weeks ago and just got the results on Friday when I visited my pain management doctor. Turns out my pulse ox drops down to 52% when I am in a REM state of sleep. Not exactly what I wanted to hear. Which leads me to my next appointment.

I see the sleep doctor that read my study on Wednesday. I am curious to learn how he plans to save me from dying in my sleep. lol! In his report he suggests a CPAP (which does not work for me because of the extremely sensitive skin on my face and the fact that I am already pretty tied up at night with the feeding tube apparatus) or upper respiratory surgery. I will keep you posted.

I round off my visits with an appointment to my Rheumatologist, my absolute favorite doctor. If not for her, I would not be here today. I truly believe that. When I count my blessings, she is high on that list. When I was first diagnosed and struggling to find my way, luckily I found my way right to her. Thank you N! I am forever indebted to you!

Outside of that, I am anticipating the start of Fall in 2 days. I love fall. My porch is already decorated with pumpkins, mums, owls, and corn stalks. Honestly, it looks like Autumn puked all over my front porch and I love it! It really is the simple things that make me happy.

We went to the wedding of two special friends this weekend, it was a great time and always wonderful to see two people happy and in love committing to one another. And also great to visit with so many great friends. From that happy extreme to a solemn one. We also went to the funeral of a friend’s mother. It was heartbreaking to see her, her family and her children so upset. I unfortunately did not have the honor to know her mother, but she seemed like an amazing woman.

Saturday night, I stayed home to spend time with Tyler, Jake and Kelsey. The brides were very understanding and encouraged me to enjoy my time with the kids, which meant so much to me. I love my time with my children and appreciate every second I have with them.  I am so blessed to be the mother of these amazing children. They are my greatest accomplishment in life.

So my message to you this week is so simple, take time to enjoy every second. Do not take anyone or anything for granted. Nothing is guaranteed. Enjoy your loved ones every chance you get. Be present. Make wonderful memories that will last a lifetime in their hearts. Spend your time and your attention on what really matters. It really is that simple. Follow these tips and you too will have a happy heart.

Love and hugs to you all!

Woohoo! My life is a blog!

Why Me? — September 14, 2015

Why Me?

/joeylynn28/8 Comments

blessed

You know many times I find myself asking, Why Me? But not in the way you are thinking, I’m sure.

I woke up this morning and my stoma (hole where my feeding tube goes into my stomach) was so sore and I was a little bummed. But I took a second and looked around as I got out of bed and said asked myself, “Why me?”  Why am I blessed enough to be able to get myself out of this bed and be able to deal with this situation. Why am I so lucky to have great health insurance and live in an area surrounded by some of the best hospitals in the country? Yup! The pain sucks but why should I harp on that when I can focus on all of the blessings that surround me?

I have a house, it is small and I could complain about not having enough space, but this small house is a HOME. It is OUR HOME.  When my children and their friends or our family and friends are filling its small rooms, our house radiates love and there always seems to be enough room for everyone to feel at home. I have a small yard, I could never have a large garden or a pool, but on a fall morning, I can walk barefooted across the dew covered grass and hear the birds chirping and nothing else and suddenly my yard feels like it roams for acres and it is all the lawn I need.

I can’t eat all the food I want to eat, but I am so lucky that there is the technology to allow me to get all the nutrition my body needs via the feeding pump. Why me? I love to eat! Why is this disease taking something else away from me. And then I think…Why me? Hmmm…Why am I blessed enough to lose the ability to eat and to not lose my ability to see my children’s faces, Thank you Lord!

I am so blessed to have two amazing sons. I am so lucky that I was blessed with two beautiful pregnancies and births of the best two sons I could have ever dreamed of, all before my health changed a bit. Some women are diagnosed at a young age and are never able to conceive. So, with all of the things I’ve done wrong in my life, why me? How could I be lucky enough to have them? They are “my reason”. I thank God everyday for choosing me to be their mom. And to top it off, I have the daughter I never had in Kelsey. My maternal cup runneth over. 

I was a divorced mother until the age of 42. It is hard to date with a chronic illness. Why me? How am I going to meet a man when I am in and out of the hospital? I could be mad that most men didn’t want to be burdened with my health problems. But instead, I said, why NOT me and found the most amazing husband. He is my best friend, partner in crime, peanut butter to my jelly, caregiver when I’m sick, and even laughs at my dumb jokes. There are so many women in my situation that don’t have a partner. Why did I get so lucky to have a man to stick by me during chemo, thinks I look hot in a hospital gown and doesn’t get grossed out by my feeding tube…even when I do? I am blessed.

I was raised by a single mom, no dad around. Why me? But NO…my mom is the best mom in the world…all day, every day. She played mom and dad as needed throughout my whole life and I never felt slighted. It was never an easy job for her and still isn’t it, but she always has a smile on her face…ALWAYS! And when she couldn’t handle me for whatever reason (aka I was being a HUGE brat) I had my amazing uncles to step in and make me stay in the hospital when I needed to, give the firm “talking to” that I often needed in my teen years. Why me? I grew up in a broken home. HA! Broken home? I don’t think so! Why did I get so lucky to be blessed with the BEST mom in the world with the BEST uncles in the world and more parent figures than any other kid I knew. I was one loved kid!

As an adult, I have been so fortunate to have friends who are family and family who are friends. I hope that makes sense. It truly is the only way I can describe it. You know who you are…you touch my life each and every day with your love, guidance, support, advice and friendship. You all play different roles…all beyond important to me.

My heart and life overflows with love and respect for the people in my world that God has so carefully hand selected for me along the way. Why me? Why not me? Thank you God for blessing me with the ability to see the beauty in all situations that you have placed me in. Only you could create these story lines.

Thank you friends! I love you all!

Woohoo! My life is a blog!

It’s a Labor of Love… — September 7, 2015

It’s a Labor of Love…

/joeylynn28/4 Comments

labor

Happy Labor Day to all! I hope you have enjoyed the day with family and friends and…for those of you that can eat…good food. It feels like it has been forever since we last spoke. Where did we end up last time? Hell, let’s just do a recap of the week.

Monday was the first day of school. It feels like much longer than a week ago. That was the day Jake went to tech school but forgot his paperwork and his change of clothes for actual school and I met him in a gas station parking lot on his way from point A to point B. I gave him his signed paperwork and his clothes and like a normal 16 year old boy, he proceeded to change his clothes in the middle of the parking lot. Oh well. Mission accomplished.

Tuesday was Tyler’s turn. He forgot his work shirt at his dad’s house. When I asked him where it was and if it was clean, he replied, “in my room and maybe…lol”. In other words, who the hell knows where it is and you can bet your ass it’s not clean. I went to his dad’s house, found several unclean shirts and proceeded to do several loads of laundry. Wasn’t what I had planned for the day, laundry at the ex’s, but I will always do what is best for the kids. Granted I had just gotten out of bed when he texted me in the morning and off I went. Not really thinking ahead that I would have to drop off his work shirt at the school office looking like a crazed lunatic with a cockatoo perched on her head. That’s me. Just smile and act sane, nod and say have a nice day.

Wednesday, hmmm…what happened on Wednesday? Oh that’s the day I played plumber. I had a small drip in the upstairs bathroom sink. I went to Home Depot, bought the appropriate tools for the job and came home and fixed it. Yea right! It was not that easy! I went to Home Depot like 3 times and had to disassemble and reassemble the same thing about 6 times because I kept doing it wrong. I finally figured it out. I felt pretty good about myself as I stood up, hiked up my big girl panties (don’t want to leave the bathroom area with plumber’s crack) and went about my day. All is fixed…or is it. Dum dum dummmm…..

Thursday was my caretaker day. Kelsey had all 4 of her impacted wisdom teeth removed. Poor girl, she looked so sad but handled it like a champ. She rested a lot throughout the day. She was an easy patient. I got a call around 5 pm from Tyler that his car had broken down on an extremely busy road in the middle of an extremely busy intersection, and of course at rush hour. I called AAA and started the trek to get him. In the meantime, a few guys from a garage close by pushed him out of the intersection and into their parking lot. Convenient yes. But I really appreciated them getting him out of harms way.Kelsey and I brought him home and tried to make the best out of the night. He had to work the next day so he took my car.

Friday was a real kicker! Day started early with Tyler leaving at 6:30 am to go to work. Around noonish, I was in the downstairs bathroom and I noticed a bubble in the paint on the ceiling of the bathroom. This can only mean one thing…water leak. I am trying to think of where it can be coming from when I remember a few days back when I did my fancy plumbing repairs…oh shit! Up the steps I go! With one swipe, rip everything (cleaners, mouthwash, etc) from under the sink and find that the hot water valve is dripping…bad. Oh frig! I think to myself, maybe it just needs to be tightened, righty tighty, lefty loosy. whatever the hell that means. I was tightening it (or so I thought) when the valve shot off the pipe and steaming hot water was shooting straight out full power. I panicked, I cursed A LOT! I went to the basement to turn off the main water line. By this point there was about an inch of water all over the bathroom floor, with almost every towel from the linen closet now lining the floor. At about this point, I hear a lot of action downstairs. Turns out the water was also flowing through the ceiling into my laundry room and the downstairs bathroom. Not sure flowing is the right word, kind of like a torrential downpour inside my house. My clothes are soaked, every towel and rug is soaked and I am beyond frustrated. I waved the white flag, turned in my plumbers crack and called a real plumber. He came within 30 minutes and had it all fixed up. And of course, found out my main water valve is about to snap, that’s getting fixed on Tuesday. That excitement was followed by many loads of laundry. Good times! Oh wait,there’s more. My throat clearing and coughing got continuously worse through all of this to the point that I needed to go to urgent care on Friday night around 7 pm. Yup, bronchitis! A few more scripts added to the mountain and stating to feel better now.

Saturday morning brought a call from the garage about Tyler’s car. It would be done that afternoon. Good news! Bad news…it will be $634! Of course it will. But, at least it will be done. Tyler went out with some friends that night but Kelsey didn’t feel up to it. We took her out to dinner and she ordered soft food. She had to be sick of scrambled eggs, jello, pudding and broth. While we were sitting in the restaurant, I noticed my tube seemed wet. I thought my tea must have dripped on it. I dried it off and once again it was wet. I wasn’t dripping on it, my tube had cracked. It had to be replaced. Of course it did. So off to the hospital we went. They were unable to replace it that night because there wasn’t a doctor in Interventional Radiology to do it so they sent us with gauze pads, silk tape and told us to duct tape it. He actually said “Duct tape fixes everything”. Scary to hear an ER doc say that. Makes me glad I didn’t need anything more critical.

Sunday morning we went back to the hospital for my new tube, We got there at 8 as instructed and I was on a gurney in the hall outside of radiology until 10:30 am. I slept the entire time. Poor Tim, not so much. I think he just paced. I was finally taken in and had my new tube placed and was home by 12:30. Everyone was home that night so the day turned out to be a good one!

Today had been a day of rest for me, well after I make breakfast. I woke up to Jake at my door telling me we have a problem. The way this week has been, not what you want to wake up and hear. The problem was that I was asleep and he, Tyler and Kelsey were awake and wanted breakfast. Up and at ’em…bacon and pancakes for all. I love my kids! I took a long nap today. It was peaceful and felt so good.

I ask you…is it just me, or is my life just a tad on the crazy side? Wishing everyone a great week! See you next Monday!

Woohoo! My life is a blog!

Change of plans… — September 2, 2015

Change of plans…

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 Sorry I have been slacking on my blog posts lately. Turns out back to school time is still a crazy time of the year…even with a junior and senior. But, I wouldn’t change it for the world. 
Day one, I get a text the one of my dear sons forgot all of his paperwork  at his dad’s and asked if I could pick it up and bring it to him…I did. 

Day two, I got a text from my other dear son that he left his work shirt at dads and could I go find it. So…I did. It was dirty. So I washed it…at dads. And brought it to him. All was good.

Even on my worse day, I will drop everything and drag myself wherever I need to be for my sons. I love them with every ounce of my being. 

Tonight is Back to School night at Jake’s new school. I am anxious to meet his teachers. After all, up until this year, my kids have been at the same school since kindergarten. I knew everyone there and they knew me. Change is hard. Not for Jake, he loves it, but for me.

I have been having a really tough week with my lungs. The coughing and throat clearing have kicked into ultra annoying high gear and is sometimes hard to breathe even. Luckily, I have a pulmonary appointment coming up. I don’t have a good feeling about the outcome of my pulmonary function tests. But, whatever it is, I’ll deal with it and keep trucking along. After all, what’s the alternative? 

I am super excited for autumn. It’s my favorite season of the year. I love pumpkins and all things pumpkin. I love fall colors and falling leaves. I love big sweaters that cover my chubby belly and now my tubie paraphernalia. I will miss snack size candy bars left over from Halloween night. I might have to buy candy that I hate. I’m not sure they make any candy that I hate though. Hmm, may have to think about that one. The one downside to fall, is that winter is just around the corner. 

I hate winter. Winter brings extra joint, muscle and bone pain, even more fatigue and the worst of all….digital ulcers. Extremely painful sores on the fingers caused by lack of circulation, a condition called Raynaud’s. My ulcers often lead to gangrene and a guaranteed “getaway” to the hospital for a week. Not the kind of vacation I want.

Enough of all of that…today is warm and clear. I will enjoy it while it lasts. I don’t want to rush the warmth away.  

With all that said, I will only be blogging once a week now. Expect to hear my antics every Monday. 

Please don’t give up on me though!!!

My life is just exceptionally crazy right now, which means crazier stories to share! See you on Monday!

Woohoo! My life is a blog!

The Waiting Game — September 1, 2015

The Waiting Game

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patience

Far too many of us, with chronic illnesses and without, have participated in this all too familiar game…the waiting game.

I spoke to a very special friend tonight about tests and was reminded of this process. Do “they” (you know who “they” are – the doctors, hospitals, insurance companies, any schmuck that answers the phone and puts you on hold) not know we just want to get the test done and get the results?

I go to the doctor and am told I need some tests. I call to schedule. I go through the all too familiar – Press 1 for English, Press 2 if you are constipated, Press 3 if you are going to yell when we pick up…etc. I press all of the appropriate buttons only to find out that all agents are busy helping other pissed off patients right now so please leave a message and someone will (might) call me back as soon as they are good and damn ready. I leave a message. I WAIT for a return call. I give myself a deadline. If I don’t hear back in a day, I’ll call back. I sit by my phone 24/7 and no call. I go and take a shower, the fastest one ever, and guess what – I missed their call and they are now closed for the day. Son of a B*#@h!

The game continues and so far…they are winning. I call them back the next morning. I go through all the motions and get through this time. The representative answers and tells me that she would LOVE (I bet!) to help me but I will need prior authorization from my insurance company in order to schedule the test. Again, I WAIT. I get the authorization, after 3 separate phone calls to the insurance company packed full of bitching about it taking so long. I call the hospital back to schedule the test.

The nicest woman to ever work at the hospital answers. I was so relieved. She took all of my information and scheduled the test for me. Almost there.

I get to the hospital on test day. I arrive early. I always arrive early. They sent me to the changing room and I change into an extremely over sized hospital gown and I sit in the waiting room, the drafty, crowded waiting room. As if waiting isn’t enough, waiting feeling half naked in a room full of strangers makes it much worse. I find myself looking around the room at everyone’s socks and shoes. How odd people look in hospital gowns and socks. I really can’t explain why, but I find myself laughing about it. They finally call me back to the room. The test, not so bad, only takes a few minutes. The hard part is over now, right?

You should hear the results in a few days. HA!!!! ONE WEEK LATER…NO RESULTS. I call for the results. The nurse will have the doctor call me back. The nurse can’t tell me. Oh God! This must be bad. This is it! I start googling all the possibilities. Before I hear back from the doctor, I have my dress picked out for my funeral. Blue, I look good in blue. It brings out the color of my eyes. What am I thinking? Who the hell is going to see my eyes? That’s creepy! The phone rings…it’s the doctor…I take a deep breath…she tells me to relax…the test is negative. Oh God I knew it! It’s over! How can I tell my kids?

Wait what did you say? Negative? Finally I got a negative result!!!! I rarely get negative results!  Woohoo! No blue dress for this chic! This waiting game is over.

Well played pain in the ass, stressful test…well played. But, I won this one!

Woohoo! My life is a blog!

Another first day of school… — August 31, 2015

Another first day of school…

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It’s that bittersweet time of the year. I would not call it the most wonderful time of the year. I love having my sons around as much as possible…. Realizing they are growing up so fast and will be on their own before I know it. 

Tyler and Kelsey are starting their senior year today. Jake is starting his junior year at a whole new, much larger high school and also starting tech school. The clothes and notebooks are all bought. Forms are all filled out. But…still…something doesn’t seem right. Something is not ready. And that something is…ME! Where has the time gone? It seems like yesterday I was laying out their clothes and packing their lunch boxes. No school buses this year. No PB & Js. Just two almost grown young men another year closer to independence. 

I am so proud of the men they have become. My heart is so full of love for them and my cup runneth over. 

For all you other parents going through first day of school melancholy or can relate in some way, I send you a big hug. 

I think I will make this am’s coffee Irish. This morning needs a little kick! Cheers! 

It’s 5:00 somewhere..maybe 5 am but who’s keeping score? 

Woohoo! My life is a blog!