Tubie or not Tubie

Tubie or not Tubie

Did I make my throat clear? — June 19, 2016

Did I make my throat clear?

coughing 1Can I tell you how much I get annoyed with MYSELF and my throat clearing? I wake up EVERY morning and cough and clear my throat for at least 45 minutes. It makes me crazy! This is my life!

So when you have systemic scleroderma and ILD (Interstitial Lung Disease) things (mucous-gross…sorry!) sit in your lungs and are hard to get out. Mornings are a real treat for me and everyone around me. It happens at other times of the day too, but morning are the worse. And, to go along with it…there is a scleroderma cough too. You can imagine, I am a blast to sit and watch TV or a movie with.

Imagine, the room is quiet, TV is one and the throat clearing starts. Honestly, I can feel the annoyance in the room. I hate it. I know that my family hates it! I can feel the tension build. I can see out of the corner of my eyes…the fingers tapping, the single foot shaking…all in an attempt to not say anything. After all, everyone knows I can’t control it. Or do they think I can? I am offered a glass of water. And then hot tea. That’s nice and all…but won’t help my clear my lungs. I try to hold it in. And then I burst out in a coughing fit. I can’t hold it back. Do I say something to them? No, I try to play it off. It’s like trying to cover up vomiting mid conversation with a smile. Doesn’t work. THIS IS MY LIFE.

In other departments of my life, Tyler & Kelsey’s graduation party was yesterday and it was perfect. It was so nice to see all of my effort come together in a beautiful day filled with family and friends to celebrate our graduates! And…we got some great photos. Miracle of miracles…my boys even let the photographer take photos of us together. Like I said, perfect day.

In other exciting news… I had a blog published by The Mighty! I am both honored and ecstatic! I will be smiling from ear to ear for quite a while! Thank you to the folks at The Mighty!

Lastly, today is Father’s Day. So, Happy Father’s Day to all of you dads out there and to all of you moms that are both moms and dads! I salute you! Enjoy your day! I am off to Longwood Gardens for a stroll around the beautiful gardens with my hubby!

Woohoo! My life is a blog! Love and hugs to you all!

Let me sleep on it… — June 8, 2016

Let me sleep on it…

Hello all! Well, yesterday was an appointment day at Penn. It was as I call “Lung Day”. I had my PFTs – Pulmonary Function Tests, my follow-up pulmonologist appointment, followed by some labs. It ends up being a long day for me since it is in city and frankly….traffic sucks.

But, let me back track a bit. Do you know I have two dogs? Nibble and Chocolate. nibbles and choc Cute, right? Yup! Adorable. But for whatever reason over the last few months, they have turned into mischievous little a-holes. I love them to pieces. Don’t get me wrong. If anything happened to them, I’d be sick. lol…well…more sick. Up until now, they have been the easiest dogs ever. About 6 months ago, I got rid of their crate. I’m hardly ever out. And if I am, someone is always home. So, we took it down and stored it. They handled it like champs. Until now! We get home about a week ago, they have created their own buffet in the mud-room. They drug out a case of Caesar’s dog food and ripped opened the box and removed individual containers and helped themselves. Let me shed some light on this. There are days that we serve them this same exact food, cut neatly into squares on a plate and even warmed, and these little divas won’t even touch it. On that day, that ate through cardboard and plastic to get to it – when they had their own food on a plate and a bowl of Blue Buffalo in a bowl also in the same room . SO THEY WERE NOT HUNGRY! JUST BEING A-HOLES! Along with that treat, they had ramen noodles. I mean what dog buffet isn’t complete without ramen? And, they even drug across the floor the 5 pound bad of epsom salt I had bought to make bath bombs and ripped it open – just for SHITS and giggles I guess. NO REALLY!  We looked it up to make sure they weren’t in harms way. Epsom salt ingested by dogs – yup causes a laxative effect. WTF?! So – one time thing right? And you ask, how long were they alone? They were alone for about 2 hours. OK – so back to lung day – they were left alone for 10 minutes in the very same room my mom had been sitting with them in all day while she was working. Three words – STRAW CAMEL BACK. My dearest cute pups tore into the graduation decorations that I had been prepping over the past few weeks to save myself last-minute work. Deep breathes. Disclaimer – No cute puppies were injured in any of the aforementioned incidents. Good thing they are cute!

Any-who… Lung Day. Don’t you know I just sent back my oxygen two weeks ago. It was one of my rebellious moves. I get into moods sometimes when I just don’t want to be sick anymore and I want to rebel. I was sort of it that mood when I had my tube pulled. It can get that drastic. Does anyone else with chronic illness get like this? I just get to the point that “I am over that oxygen on my face!” or “I am so tired of dragging an IV pole around!” I can’t imagine I am the only one. Since I am so hard-headed and sent it back…now I need to get sleep tested again! Have you ever done a sleep study? The one I had to do to get the oxygen at first was in a hospital. A sleep study has to be the worst nights sleep ever. Even if you take a sleep aid, you won’t sleep. You are harnessed with so many wires you feel like a marionette. It’s like “I’m a real girl!”

im a real girl

You are a puppet of the sleep people. And to add to all of that – as if that isn’t enough, you are being listened to and watched!! SUPER CREEPY!! BUT – since we know for a fact that my oxygen does this, I lucked out and don’t have to go back to the hospital again. That’s a relief! I get to do an overnight sleep study in the privacy of my own home. They will all come here and watch me….just kidding! Wouldn’t that be awful??? Actually, they will probably just drop off some type of pulse ox equipment that will monitor my oxygen level all night. That will show the dips and will be proof enough that I need the oxygen to come back and then voila…oxygen will be coming back any day. I got a small break though. I have to sleep on oxygen. Not a CPAP. It’s not apnea. My oxygen level drops dangerously low while I sleep. Therefore, I sleep with an oxygen cannulacannula in my nose.

I have what is called an oxygen concentrator next to my bed. It is huge. Its like the size of a big guitar amplifier…lol. It makes the oxygen for me. Now, the next step is I am having a full exercise test done to see if I need to wear oxygen during my awake time while I am up and moving around. This is a possibility since I get so winded and also dizzy when I am active. I will keep you posted on that. My PFTs showed some things stayed the same and some things decreased. One of the things that decreased in my lung capacity. I am taking it all as it comes and trying to just stay positive. This is a busy time is our house and no time for hospitalizations or depression. So…I will no stress about it for now.

Speaking of busy times – One week from today. Tyler and Kelsey will be walking the stage and receiving their high school diplomas. I am so proud of them both. It is a big accomplishment and I am so honored to have been a part of their high school journey – late night essays and projects included. We love our kids and wouldn’t trade one minute of any of it! Two down, one to go! Next year, Jake will graduate from high school. I can’t believe my baby will be a senior this year. I love them all so much!

Looking forward to the graduation and the party and then on to Jake and Tyler’s birthday’s and then in July, Kelsey’s birthday! Busy times in our family. And like I said…I wouldn’t trade one second of it! And then on to my favorite week of the year – our family’s annual trip to the shore. My husband started this tradition for us 5 years ago and I will forever be grateful to him for a) starting it and b)making it happen every year no matter what! I love you, honey!

Woohoo! My life is a blog! Love and hugs to all! Continue reading

Can you do me a SOLID? — May 31, 2016

Can you do me a SOLID?

Many of you know I have a gastroparesis. For those of you that don’t or don’t know what it is, Gastroparesis is a disease of the muscles of the stomach or the nerves controlling the muscles that causes the muscles to stop working. Therefore, when I eat or drink, I get full almost immediately and it takes me a very long time to digest my food. 

If you have read my earlier blogs, you’ll know I used to be a “tubie” or a person with a feeding tube. I had a GJ tube. That is a tube that splits into 2 tubes- one into the stomach (G) and one (J) into the small intestine. I had the tubes for about 7 months. And- it was a life saver. But, I’m not going to lie, it was really hard not being able to eat anything thorough my mouth. And it was even more difficult being attached to a feeding pump. 

Tube life is challenging for a lot of reasons- the obvious- THE TUBE -and the less obvious- the not eating. I had created backpacks for my pumps so that I could be mobile while “feeding”. If you ever want to feel like a freak show- walk around the mall with a back pack with a tube coming out that runs to your body in some way. It really gets a consistent response. People smile. They follow you around. And, if you make eye contact, they compliment you on something….anything. “I love your shirt”. “Your hair is pretty”. “I like your pocketbook”. Or the weirdest interaction I ever had and probably my favorite was around Halloween at Target. I had taken my backpack off because I was just feeling weak that day. I had it hooked to the inside of the shopping cart with the baby seat belts so I guess it was more obvious. A youngish woman followed me up one candy aisle. And then down another. We made eye contact. She smiled. And then it happened. She said she liked my shirt. (Of course you do!) And THEN offered me coupons. Uh- ok! Awkward! Ok, uh! Thanks! Yes, I would LOVE coupons!! 

Still my fave!

Downside was the granulation tissue that formed around the stoma, or the hole. Granulation tissue is raw tissue formed when the tube moves around too much and also from the acid coming out of the stomach. It can be somewhat prevented with diaper rash ointment and special tapes. But, not fool proof. I suffered with it at least one week out of each month. It would hurt so bad even just to breathe or walk. Trust me when I tell you, it was awful. 

So, I eventually got very frustrated with the process and had my tube pulled the day before Thanksgiving. I still have the condition that got me the tube in the first place so I have to deal with it still everyday. Now though, I eat solid food once a day and basically have liquids as I can tolerate. 

The point of this blog? Oh yea! I had to go for testing. A Gastric Emptying Study- a GES. I have always had this done at my normal big hospital. With my new insurance I had to go to my local small town hospital. No big deal I thought. This test is a nuclear medicine study. Usually, I am given water with some radioactive matter in it and I drink it and they watch how long it takes to travel and empty. And then, I am given a sctambled egg and toast sandwich with special radioactive matter (talk about your special sauce) to eat and then same thing. (Side note- scary thing when someone brings out a heavy metal tube with a syringe inside of it that they handle with thick gloves to insert the “matter” into your food for you to ingest. Lol! Don’t worry! It’s safe!) They watch it trave for about 3 hours. This determines the delay in digestion of SOLID food. See what I did just there? Can you do me a SOLID? Lol! I do crack myself up! But, my little local hospital, yea…they gave me oatmeal. Not what I would consider a solid food. This test showed my digestion had sped up- not normal still. And I know for a fact, it has not. Oatmeal? Really? That is a soft diet food!! Even my GI specialist was like- uh, we need to redo that here. 

That was a whole lot of info to get to that wasn’t it? Well, your welcome. It was a learning lesson. Consider it my gift to you. 🙂 

Hope you had a happy Tuesday! 

Woohoo! My life is a blog! Love and hugs to all! 

A “present” for me?  — May 30, 2016

A “present” for me? 

No. It’s not my birthday, or anniversary. And IT IS Memorial Day. And I pay tribute and will be forever grateful to all of the men and women who made the ultimate sacrifice to protect us and our beautiful country. And to their families, my heart goes out to you today. 

But today…I received the gift of the PRESENT!! I feel very alert today- I am in the here and now, in the present and it feels amazing!! This is the time of the day I get really tired. I am a tired, but still feel alert enough to type this!! Woohoo!!!

Have I told you lately? Scleroderma really sucks? It is a daily question of “what the hell challenge will you throw at me today” and ” will you allow me the energy to deal with it?” Typically the answers respectively are “whatever the “f” I want to” and “a resounding hell no!!!”. Over time, those of us with scleroderma get used to it. But sometimes, it would be nice to get a freaking break. This is where I would classify the past two weeks; tucked not so neatly away in the “please give me a f’n break drawer”. Trust me. It would not be lonely there. That damn drawer is packed so full it could explode at any minute! 

As you start this week, remember to live life in the PRESENT! Enjoy the gift you are given. I know I am. 

Woohoo! My life is a blog! Love and hugs to all! ❤️

What a week I had…I just wish I could remember it! EEK! — May 28, 2016

What a week I had…I just wish I could remember it! EEK!

 

sad-student-clipart-hospital-clipart-confused_mother___hospital__clip_art__illustration_by_rabid__rabbit-d77f9xbWell…last week started just like any other week. And as far as most could see, it was. But, to those close to me, it was not at all “a normal week”. I was going about my normal tasks, however, I didn’t have my normal body strength. Let me tell you more about what I am now calling the week that I “lost time”.

Last week was a big week. My sister-in-law, Lisa, was getting married. I was so excited for the BIG day. I even had a part in the wedding. The rehearsal and dinner was on Thursday night and the wedding was on Friday. Thursday was an especially busy day for me. Kelsey had an appointment for a physical and immunizations for college for the fall and the dogs had a vet appointment for their shots.  My mom sensed the “I was a bit off” and decided that she would drive me to these appointments. Thank God she did!

untitledconfused

Everything I am about to tell you is not from my memory…NOT ONE SINGLE BIT! This has all been told to me over the course of the past week, a little bit at a time. Even as I write, Tim is helping to fill in the blanks for me.

On Thursday, my mom and I took the dogs for their appointment and then brought them back home. No clue. My mom just now told me that we went back into the room with the dogs for their exam and their shots. Apparently, I spoke intelligently to the doctors but I was tired. I started to get light-headed and went out into the waiting room for the rest of the visit. My mom said I looked exhausted and drained. Even now, as I type, I am still finding out facts about my “lost time”. This has to be the scariest thing that has ever happened to me.

After coming home from the vet, we left to pick Kelsey up from school for her appointment. I went into the doctor’s office with Kelsey. Once again, I spoke intelligently to the doctor, asked questions, and still…no recollection of the visit, the doctor we saw or anything about the appointment.

When we got home, I went right to sleep on the sofa. Tim reports that I slept for almost 2 hours. When he got home to pick me up for the rehearsal, I was asleep and wouldn’t get up. When I finally got up and realized I was making us late (we missed the rehearsal), I was very upset and crying. NOPE – don’t remember that either. I don’t even remember what I wore that night. I asked Tim – he’s amazing and I love him but he told me something black and white and a long sweater. Hmmmm….I know the sweater but was it leggings, a skirt, pajamas (I hope not!). We made it to the church and I cried right away because I felt bad I had missed the rehearsal. This is not a trait of mine! I am not much of a crier – and definitely not a public crier! What the hell is going on? Imagine all of this…I am finding this all out over the course of the last week – and even in the last five minutes. People telling me what I did and showing me texts I sent and it is as if I am hearing about someone else’s life. What is happening?

We went to dinner, no idea what I ate or where we were. In fact, Tim brought me back to the same restaurant this week. I went to the salon where I had my hair and makeup done for the wedding for a hair cut (they must have made an impression because I scheduled an appointment and it is an hour away). I walked into the salon and people were calling me by name and asking about the wedding. I didn’t know any of them. We went to the restaurant after, not one thing was familiar.

I know, you get it – I don’t remember a damn thing! But – do you get the extent of this? I will wrap up by saying the next day was the wedding. I don’t remember anything from that day either. I went and had my hair and makeup done with Lisa and the girls. Guess what I did after my appointment? I climbed into Tim’s SUV, next to my wheelchair (oh yeah – I had to use my wheelchair for two days because I was so unsteady!) and went to sleep! I went to sleep after having an updo and my makeup done in the back of an SUV, next to my freaking wheelchair, in a parking lot, with the back hatch open!!! Whether you know me or not, this is not something I would do! This isn’t something any woman would do!!! Do you get the extent of my “F’d upness?”

Ok – so fast forward to yesterday. After hearing all of the stuff that I had done and not known about – I thought it may be time to report this to my doctor. So, I did. She suggested going to the ER. So, I did. I had a slew of blood and urine work. I’m not pregnant! That was a close one! What a relief! I had a CT scan and an MRI. No tumor or full stroke. I need to follow up with the neurologist next week. But with the symptoms, it is likely that I suffered a mini stroke or a TIA {Transient Ischemic Attack}. This is harder to physically diagnose but the neurologist should be able to shed more light.

So, for all of you people out there doing drugs and drinking to get that feeling I just had – get the hell out of here!!! What is your problem??? You could not pay me to experience that again for five minutes. Appreciate the here and now. You never know how long you have to live in THIS MOMENT RIGHT NOW! ENJOY IT! LOVE YOUR LOVED ONES! LIVE LIFE TO THE FULLEST!!

present

I thank my husband for standing by me and loving me every day, even the ones when I don’t even know he is there. You are my best friend and I love you more than you will ever know! And to my mom for always willing to drop everything to go or do whatever it is I need. And most of all to Tyler, Jake and Kelsey for being the reason that I will always come back. I love you all!

Woohoo! My life is a blog! Love and hugs to you all!

A Eulogy for my living Father — May 22, 2016

A Eulogy for my living Father

tombstone

I will warn you now that this will be the darkest blog I write. But, for me, the most necessary. I have spent most of my life, since about the age 16, I would generously say, without a dad. Like so many other children of the 70’s, my parents divorced when I was young. I spent most of my time in the early days on the two-week plan. I even got the welcome-to-the-children-of-divorce package – NEW LUGGAGE! Like that was going to make it all better. My brother and I went to my mom’s apartment for two weeks and then to my dad’s for two weeks. It was torture at first and then it became somewhat what I would call the “fucked up norm”. Until…it couldn’t be anymore….then it all hit the fan…

My dad met a buxom blond, named Cathy. Ironically, the same name as my dear Mother. One thing led to another and within a few weeks they lived together. A few weeks after that, married. I found out by phone. Seems like just a few short weeks later, their addictions began. We found out by finding their stash. When we told my mom, she presented it to the court system. We were no longer allowed to stay there. He must have been devastated because his response was “they are going to see this stuff on the street so who cares?” Yup! Should have known I was the offspring of the father of the year! Oddly, I had some visits with them. All were horrific. One in particular: Cathy holding a knife up to me behind my father’s back as if she was going to stab me while talking to me in a sweet voice so my father was none the wiser. Or my favorite nights were the ones where she would scratch on my bedroom door with her disgusting long nails to try to scare me after forcing us to watch scary movies. She was really the greatest! And to add to that, she was a coke head! I mean, what more could any young girl want? And please, keep in mind, these little snippets are such a little snapshot into a sad and scary world I spent while I was with them. Some of the things they did were beyond inhumane, some illegal. All I should have never had to witness. But, I did.

So, flash forward a few years. I have a big heart. I decided I will give these horrific people another chance. I am not sure why. I think really because I believe that everyone, no matter how awful, deserves another chance. Fool me once, shame on you, Fool me twice, I am a stupid woman…or something like that. At this point, I had children. I thought maybe they would be better to my sons than they were to me. Although, I would be watching like a hawk and they would NEVER be alone with my kids. This would be their first chance to prove themselves to me and to the boys. They asked us to a church carnival. I have no money, ZERO. I was a single mom. I knew my sons, 3 and 5, would have a blast at the carnival. At first, I turned down my father’s offer because I did not have the money to go and he assured me it was their treat and the kids could ride rides and get treats and play games. STUPID STUPID ME! They brought us there! My dad and Cathy played games while we watched. They won the biggest elephant ever! All night I held back tears. Tyler’s eyes lit up knowing in his heart it would be his! Me knowing in my mind – it never would. Cathy walked up and said I can’t believe your dad won me this. And they left us sitting next to the duck pond and the cotton candy while they went to put it in their car (for 45 minutes – turns out they were riding rides without us), while I had to console my crying kids who wanted cotton candy and to play games without one penny in my pocket or a phone to call for someone to pick us up. They finally got cotton candy. And then we left. They never got the elephant. We left that night and I never brought my sons around those selfish monsters again. They continued to use drugs. That was not a world for me or my children to be around.

I think the next time I heard from my dad was when he found his wife dead in her bed. I can’t believe he actually called me to tell me, as if I would be sad. I don’t know the whole story. I believe she choked on her vomit. Do the math. I once again was the bigger person. I went with him to the funeral and consoled him as he cried for a woman I despised. A woman that made my heart ache. After those days were over, the distance was in place again.

I’ve mentioned to you that he doesn’t care for his own mother. Although he lies and says he does. Disturbing. A few years back, he actually called me to see if he could move in with me because he was homeless.  I had just gotten out of the hospital from a three-week stay. He never even asked how I was.

Anyway, my point.

At Christmas this year, he sent me a text that this was his last Christmas; he had cancer and was dying. Mind you. he has been told of my illness multiple times and has never once asked about me. NEVER. I even offered to take him to a treatment. I think it was a lie because he never took me up on the offer.

Last night, he sent me a text. He told me he wanted to send my sons a card but didn’t know their names.

Didn’t know my son’s names.

Didn’t know my son’s names.

I repeated that sentence over and over in my head all night. And it haunted me. This person that has hurt me all these years – still hurts me. I am so insignificant in his life that he can’t even bother to know the names of the incredible, amazing people that I brought into this world. He can’t even bother to know their names! So I responded, and he is now dead to me.

hurt

This is my eulogy to my father who it still alive.

DJH

born 1948 ~died 2016

You died on a Saturday. It was a chilly, rainy day. Quite fitting. You leave behind a loving mother who gave you so much and you never appreciated her. You used her until there wasn’t a drop left of her to give and then you placed her into a home and forgot the address, never to return again for a visit or to even answer a call from the facility regarding her care.You had two children: A son, who hasn’t wanted anything to do with you in years because of the life you had shown him. You put him in situations that caused him to lose all respect for you. At times, you put your son’s own safety at risk for your own gain. Your daughter, she loved you the most. As a child, she idolized you. Always wanted to spend time with you. Always stood up for you to others. You had no time for her when Cathy came along and did not like the competition and you allowed her to kick me out of your life and your home. Lastly, and most importantly, three amazingly incredible grandchildren: Two grandsons that are intelligent, loyal, brave, honorable and respectable. All the traits a real man should be. You are none of those things, my father. A granddaughter who is more determined than anyone I’ve ever met, intelligent, motivated and will conquer the world one day. It is a shame that you died before having the opportunity to meet  and appreciate all of these amazing people while you still had time. I guess I could say that you missed out on so much of these things on your own. You always felt like everyone else’s lives were better. I hope, in the end, the path you chose was fulfilling for you and made you happy. I speak for myself when I say that I have lived a wonderful life! I have an amazing husband, the two most incredible sons God could have ever blessed me with. A Godly mother that would give her life for me all wrapped up in a little house that I own. God has been good to me. And although I don’t know what will become of my health, the days God has given me have been wonderful and rich beyond words! God bless you. Sorry our paths did not cross more often. REST IN PEACE.

So, solemnly, I say today “Woohoo – my life is a F’n blog!”

Hugs and love to all!mem

 

 

 

 

 

You really never know… — May 12, 2016

You really never know…

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 husband, 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….

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

 

 

 

 

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

Wait…where have I been?

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! Check out my great shirts. Did I tell you that my awesome husband, Tim, is a graphic artist? He has designed all 6 of my shirts. Funny thing, once we started dating, the shirts got much better…hmmm…lol! But, for real, they did! Each year, the shirts represent something that happened that year, hence the housewife this year, we got married in 2014. 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. I really appreciate it. Exciting times coming up. Tim and I will be celebrating our first wedding anniversary on November 14th, 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…

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!

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