Tubie or not Tubie

Tubie or not Tubie

Everyone is fighting something… — September 28, 2015

Everyone is fighting something…

be kind

Last week was a whirlwind. No matter how many times I clicked my sensibly stable, yet really cute bright pink Sketchers, 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!

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 spent an awesome night with my children. As the wedding was a weekend event, Tim went back to the festivities and 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?

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,to hear my husband’s voice or breath in the warm air?  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…

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…

 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

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!

%d bloggers like this: