Happy Valentine's day and an Anniversary...sort of

Valentine's flowers 2020

Happy Valentine's day everyone!  It's been a very long time since I've posted on my blog..maybe a little too long. I'm still here, made some changes in my life and everything is going well. 

On my calendar there is a reminder appointment on January 27th simply titled "The day it all started".  I added this back in 2010 after everything in my life had settled down, that was the date where the direction of my life changed course forever. Mike doesn't like to see that on our shared calendar as it brings back bad memories of what he, our boys, families and friends went through while I was experienced several surgeries, ICU and hospital stays, and figuring out how to manage my new body and life. I have come to look on January 27th as an accomplishment - that I made it through those surgeries, hospital stays and conquered my new body and figured out how to live my life with some adjustments. 

January 27th wasn't the date of my surgery but when blockage started - that first domino fell knocking more down as it went. I knew from the beginning that things were different, it came on faster and hurt much worse ever than before. From needing a friend to drive me home to waking the next morning with no change in the blockage and more pain...things were worse than before. I knew if I called my GI his orders would be to go the ER. I knew this when I called Mike during a normal January tax season day that this is where I was headed. I can't explain it, I just knew. What I didn't know is what those other dominoes had in store for me: TPN, surgery, ICU, ostomy and more TPN, home, back to hospital, more surgery, more ICU, back home again, recovery, figuring out TPN and the ostomy.  With the support of Mike, our 3 sons, our families, many nurses and physicians, ThriveRx and their awesome staff and the wonderful people I have met along the way, I not only figured it out, I conquered it.

January 27th is a celebration of life for me. In the be ginning I was worried that I might not see the one year anniversary. Would I watch our boys grow up? Would I live without TPN? Would I enjoy life as before? There were so many "what if's" which we don't remember anymore and I am perfectly fine with that! 

Ever since we've been together Mike has sent me roses on Valentine's day but that year I couldn't remember if he had. A little while after I'd been home and memories of bits and pieces of the hospital stays came back to me, I asked Mike if he had sent me flowers that year. He gave me his look of "um did you really just ask me that?" which softened to a look of love and he said "yes I did". I had been in such a fog of pain meds and recovery, I hadn't remembered that. (I don't even know how I talked my surgeon into releasing me 3 short days later in the state I was in!)  But I shouldn't have doubted that he wouldn't send me flowers that year while I was the hospital. He sent me those because he loved and missed me, that's the kind of guy he is.

This year, I got my flowers a day early (he knew where I would be all day 😃) so I am sharing them with you. Send your love to those around you who you love and support, someone that needs your support, send it for any reason. It doesn't have to be flowers, a quick text or DM will do. You never know who you might touch with your generosity, just share it around.  Here's to another 10 years of Living, Loving and Laughing with you!

Michelle

Open Enrollment time again...

Autumn is a busy time for everyone, school has started, lots of sports are going on, Halloween, Thanksgiving, Christmas, you get the picture. For those of us with Medicare or ACA insurance plans, it's also Open Enrollment time. During this time, you can make changes to your coverage or select a new plan. Each September, I receive an update from my insurance plan that compares last years rates for premiums, co-pays, deductibles and other expenses with what I will can expect to pay next year. My insurance company makes it easy for me to decide if I want to continue with the plan or not. Sometimes patients may receive notice that their plans are being discontinued or changing plan types.  Patients and their caregivers need to be aware of the changes in their plans so they don't lose coverage or pay more out of pocket than they had been. 

Open Enrollment dates for 2019 are:

• Medicare - October 15 to December 7, coverage starts January 1, 2019.
• Healthcare.gov - November 1 through December 15, coverage starts January 1, 2019.
• Medicaid and Children's Health Insurance programs - open all year around
• Employer plans vary by company and it's best to check with your HR department for specific questions.

Insurance is confusing and there are many things to consider when looking at insurance:Do I want an HMO or PPO? What's the difference?

• Do I want to go with Original Medicare or an Advantage plan?
• What will my premiums, co-pays, deductibles and out of pocket maximums be?
• Are my physicians, hospitals, and other providers covered under the plan?
• Does the insurance cover Nutrition Support - TPN or Enteral?

Medicare.gov does a good job of allowing you to look for insurance plans in your area and telling you the basics from a financial perspective. However, if you want to find out if your provider is In-network with the plan, it's best to call the insurance plan or provider to inquire if your providers are in-network. 

The Affordable Care Act plans (ACA) can be found on at healthcare.gov but their plans for 2019 are not available until Open Enrollment opens on November 1st. The ACA will ask you questions concerning your income to determine if you are eligible for premium assistance as well as co-pay and deductibles. If you are unable to get employer coverage through your own employer or your parents, this is a good place to start. However, you can always look at individual companies (Humana, Anthem, United Healthcare, etc) for plan options outside of the ACA. 

I have always managed our families healthcare coverage. Now I need to look at Medicare for me and separate coverage for my boys. Several years ago, I leaned the hard way what happens when you don't pay attention to plan changes. The Medicare plan I had switched from an PPO to an HMO which I didn't pay much attention because all my providers were In-Network with the plan. Fast forward 2 years later and I received notification that the insurance company was dropping my Infusion Provider, ThriveRx, from their In-Network provider list in October 2016. Since my plan was now an HMO, I knew they weren't going to pay for ThriveRx services and had to switch providers for several months. ThriveRx had been my only infusion provider since I went on TPN 8 years ago and they know my history and me. Luckily Medicare Open Enrollment started on October 15th so I immediately started looking for a new plan with a different insurance company that wasn't an HMO. At the beginning of 2017, I was back with ThriveRx and my team. 

The bottom line is don't delay in reviewing your insurance plans for next year. You don't want to find out in January that your favorite Doctor is no longer covered and are stuck with that plan until 2020. Feel free to reach out to me if you have any questions, I know a little and can try and help you. In a perfect world, everyone would be covered no questions asked so I am just trying to do my part in helping you stay covered so you can keep Living, Loving and Laughing through all the other insurance headaches! 

Love to all,

Michelle 

Don't be like this:

Normal?? What is it & how do you find it?

We all joke about what being normal or not being normal, but what is it exactly? I've been pondering this a lot lately because my "normal" is not your "normal". When I meet with others who have chronic health conditions, personal trauma or death, I find myself offering the only support I know and that is to "find a new normal". Quite a few of those people have told me how much that has helped them cope with what has happened to them. Finding a new normal has made a difference in their live and mine as well. But I still wonder what "normal" is. Hmm....I decided to look up the definition on Dictionary.com which defines Normal as: 

•  Conforming to the standard or the common type; usual; not abnormal; regular, natural. 
•  Serving to establish a standard
•  Psychology.
•  Approximately average in any psychological trait, as intelligence, personality or emotional adjustment.
• Free from any mental disorder; sane.

These are the very basics of the word that we are taught in school but it still doesn’t explain the word to me. Just because we conform to a common type or standard, how does that make us normal? What is the standard or common type we are being compared to? Each other, our hair or eye color, our fashion sense, our disease state, our actions, our decisions, our general well-being? Too many questions to answer to find my normal. So, I went to my go-to dictionary for the up-to-date definition: Urban Dictionary. Now I know what kind of definitions you can find on UD (yes some of there words and phrases are very far out there) but I feel UD gives us a good view of how society thinks (while clarifying what my kids are saying but that’s a topic for another day!) UD has quite a few definitions but a few really stuck out to me. These are the ones that confirmed my idea of the word:

normal

•  An idealistic state of being that remains as such. Because the idea of such a state varies from being to being and any set standard is nonetheless someone else’s idea of what it is this condition warrants satisfactory confirmation of being amongst the confirmed members of such class, by the individuals code. 
• What is "normal?" It seems as though the weirder you are, the more you fit in...so that means that weird is normal. If weird is normal, then that means that if you are normal you are weird, so in order to be normal you must be weird, which makes you normal all over again. Which is weird. It is a perpetual cycle.
• There is no such thing as normal so there really cant be a definition……

Now that’s more like it. My idea of normal is not your idea of the same feeling. How I feel on a day to day or week to week basis is different. Does that backache I feel one day two weeks ago and now I feel daily, normal? It wasn’t but now it is. My routine 10 years ago while working, exercising, and being a wife and mom is nowhere the same normal that I live now while doing the same things and managing my health issues, doctor visits and never-ending feeling of fatigue at the same time. When you lose a loved one, parent or child, how do you find that “new normal” when their birthday, holidays or anniversary comes around? You miss the life you had but struggle to find a new way to do things, day-to-day you feel and act differently.

Do I find myself “weird”? You bet I do! When among friends with normal health, I am weird. “Normal” people don’t have to worry about changing their port, sweating too much that their port covering comes loose, infusing fluids to stay hydrated, changing my ostomy appliance, worrying about a leak or explaining health issues to others. At the same time, I feel “normal” with those same people because of shared interests like our kids and their activities, books we like to reach, social media sites or just being good friends for no reason at all. But among other SBS or nutrition compromised people, I can feel “more” normal. They understand what my life is like because they have the same worries. They just get it. They understand what our life is like when we try to do regular things. That’s what support groups are about, connecting with someone who has the same “normal” as you do.

Before looking up the definition on Urban Dictionary, I felt that my “normal” was an always evolving state. To read another’s interpretation of the same feeling confirms for me that “normal” is a relative feeling: it’s always changing, developing, refreshing itself. Just like you need to hard reset your phone or computer to start working “normally” again, we need to reset our minds and thinking to find a way of doing things to find what works for us. Being rigid and set in our ways won’t help us come to terms with a chronic illness that wants to run our lives. Flexibility is key in managing the chronic illness so we control our lives, not the other way around.

No, we can’t all be normal…there really is no such thing, at least to Urban Dictionary but by taking the time to connect with others, researching your options and looking to the future, you can find the feeling of “normalcy” that works best for you. Whatever you do, just make sure you keep Living, Loving and Laughing with the weirdo’s around you!

Love to all,

Michelle

Summer 2019 & the Oley Conference

Hi all, I hope everyone has been having a wonderful summer and staying cool! I can't remember the summer being so hot so early since before I my struggles with Short Bowel and dehydration began.  We started the summer with an extended  vacation to Orlando and Gulf Shores, AL for work and pleasure. Spending time with family in both places was always wonderful for me. Mike had a conference in Orlando so me and 2 of our boys tagged along before the 6th annual family vacation in Gulf Shores. I must say it was hot in both places so I made sure I stayed hydrated by infusing regularly as well as drinking my ORS daily. My days of basking in the sun all day aren't what they used to be when you have to worry about staying hydrated, medicines that cause cancer as well as  sun-damage to your skin. Nothing  can compare to relaxing at a gorgeous beach, watching Blue Angels practice overhead or playing with my 2 year old niece (and older nieces and nephews too).  Relaxing and spending time with the important people in my life are what keep me grounded and thankful. 

I had about a week recovery before heading to Memphis for the annual Oley Conference  with ThriveRx at the end of June. It had been several years since the last time I attended one so it was great to catch up with old friends and meet new consumers and caregivers. Per their website, "The Oley Foundation is a national, independent, non-profit 501(c)(3) organization that strives to enrich the lives of patients dependent on home intravenous nutrition (parenteral) and tube feeding (enteral) through education, advocacy, and networking. The Foundation also serves as a resource for consumer’s families, clinicians and industry representatives, and other interested parties." Their conferences are packed with Researchers, Physicians, Registered Dietitians, consumers and caregiver who offer incite in what it's like to live with nutrition support and the best ways to treat it. My job duties this year included manning the Hydration Station with Maria Karimbakas RD & Kristie Brewton RN to teach nutritionally challenged people the signs and symptoms of dehydration and to sample 2 different types of ORS. This year we had the standard G2 with salt and  Trioral ORS with different flavors each day. The WHO recipe for G2 is 1/2 tsp salt per quart of fluid. You can mix Trioral with 1L of water and flavor to you preference. Since beginning hydration therapy, I have always used ORS from Jianas Brothers mixed with Propel water which I freeze to make it more palatable and longer-lasting on hot days. I could always taste a bit of salt with the Jianas product but I am now a fan of the Trioral packets. There was less salt taste with Trioral even when I freeze it. I am not a huge fan of Gatorade or G2 but will drink it if I have too and I prefer my Hamilton water over anything if I could drink it straight. Drinking plain water is not the best thing for my SBS and hydration issues so I have to supplement it with ORS. I brought several sample packets of the Trioral home and will plan on buying them in the future when my supply of them and the Jianas products runs out. Since I am a regular consumer of ORS, my job was to have patients and caregivers try the products to see which one they preferred and if they could taste the salt (for those with regular guts). It was surprising to see how many caregivers also tasted less salt in the Trioral product. 

ThriveRx also hosted an event for our consumers at the Memphis Redbirds ballgame Sunday afternoon where I re-connected with consumers and met many caregivers and patients with whom I have spoken with on the phone. In my current position with ThriveRx, I work with the Reimbursement department and consumers on insurance issues. I no longer speak with regular consumers but many different ones over the course of the month so it was nice to put a face to name. 

The Oley Conference is always informative and enjoyable. I am looking forward to their Regional Conference on September 15th in Columbus, Ohio.They are also hosting one in Boston in October. It's always a pleasure to connect with others just like me who are Living, Loving and Laughing through their nutritional issues. 

Love to all,

Michelle

PS: I've tried to add links to ORS recipes, Trioral, Jianas Brothers and Oley regional conferences so if they don't work let me know. 

Stephanie, Ann, Redbird and me

Me & Kristie

The Advocate Staff

The time I tried to get a new port....

When it comes to our healthcare it's never a bad a idea to be pro-active and take care of things before something goes bad. That's what my doctor and I were trying to do when we decided to pull my 8 year old port and replace it with a fancy new dual lumen one. Nothing is wrong with the port itself but the skin over it has become very thin and bruised from constant access and also has some scar tissue built up behind it. Over the past year or so I have mentioned it to my surgeon and we decided on putting in a dual lumen one. A dual lumen means there is 2 access spots for the needle to be inserted. The idea being I could alternate sides so skin could heal up between uses and avoid the thin bruised skin I know have. My plan was to have it done before summer started so the incisions would be healed up before the hot weather hit.

Well you know what happens about the best laid plans right? They go awry....which is exactly what happened, sort of. In early May, Mike and I went to the outpatient surgical center to have the ports switched out. All went well until I woke up and found out that instead of 1 port I know had 2! My trusty 8 year old one refused to come out! Although I knew I was getting a dual lumen port, I never really thought about how much bigger it would actually be. My old one is about 3/4" round and my new one is about 1.5 times that and rectangular. I can really feel it when I am laying on my right side. My surgeon places ports but his specialty is Colo-Rectal surgery not Cardio-Thoracic and he didn't feel comfortable yanking very hard to remove the hold port so he left it in and referred me to a Cardio-Thoracic surgeon to see what her recommendations are. I had a rough next several days because both side of my chest were sore, bruised and swollen from having work on them. Luckily both ports work so I could continue to use the old one while the new site healed as it was more bruised and swollen. We waited about 10 days to access the new port, it felt like Mike got the right spot and got blood return which is usually a good sign. I did feel some burning while flushing with saline but decided to hook up anyway, I thought the burning was from still being bruised and sore. After about 45 minutes I noticed that my shoulder was getting stiff and swollen so I stopped my pump and decided to stop flush and cap the line. I did call my nurse, texted my doctor and called my Nurse Practitioner brother-in-law who deals with ports to discuss my concerns. I already had an appointment with the specialist set up for 10 days later so we decided to wait until after then to access the port. 

We saw the new surgeon last week and she showed us exactly what the new port looked like and where the access spots are. She will try to remove the old port when we are more comfortable accessing the new one and we are ready to have the old one removed.  After several nights of trying and using different needle lengths, I was finally able to access the new port and use it successfully. I think for now I am going to access it myself since I feel more comfortable "feeling" around under the skin for the right spot to hit and give my faithful nurse/husband a break. I've added some pictures below of what the sites looked like the day after the surgery and the bruising several days later.

In time, I know that my new port will work and feel just fine once we get over the learning  curve of accessing it. In my mind, I thought every thing would be very easy and we wouldn't have problems getting old one out or accessing the new ones so I wasn't ready for both things to happen. I know I am very lucky to have had my old trusty line for 8 years because there are many that struggle with line infections and have them for really short periods of time. As long as they work with no infection, I can keep Living, Loving and Laughing while I am hydrating! 

Love to all,

Michelle

Central Lines...a webinar with everything you need to know

If you've read my blog in the past, you know that I have a port-a-cath in my chest for my hydration infusions. I have been lucky to have kept the same port for 8 years with only one line infection (fingers crossed that I am not jinxing myself!). Most lines don't last nearly that long due to many different reasons. 

What is a port-a-cath you ask? It's a type of Central Venous Catheter or Central line which is like a permanent IV line that is used for medications, chemotherapy, blood draws and nutrition support. Types of Central lines include ports, tunneled lines such as Hickman or Groshong lines, and PICC lines. They can be placed in your arm or chest and are threaded through a large vein and which near your heart. 

Originally I had a PICC line when I left the hospital but knew I was going to get a more permanent line to infuse my TPN at home. A PICC line is inserted in your arm and is harder to care for by yourself since you only have 1 hand to use for cleaning and accessing the line so I knew that it wasn't the type of line I wanted for the long run. After consulting with my surgeon about types of lines and my lifestyle, we decided on placing a port. A port allows me to de-access it for swimming and bathing since the main part is under the skin. While on vacation during the summer, I will sometimes access/de-access it daily so I can swim and play in the water with our boys.  This was especially necessary when I first had SBS & TPN and our kids were 7,8 & 13. I still have to cover it up for showering or bathing so the line doesn't become wet. I do miss using the hot tub in the evenings with Mike after the boys went to bed because it was a good way to unwind and reflect on the day. With minor adjustment on how I do things and dress, my central line is not a hindrance to me but a lifesaver. 

Taking care of my line is very important so I only allow Mike or myself to access the line unless it's an emergency. Each week when I get my delivery from ThriveRx, I make up a line kit of things I need when accessing my port. It includes a central line dressing kit, a huber needle, alcohol swabs, Bio-Patches, Tegaderm, end caps and sterile gloves to fit Mike's hands. I also need saline & heparin flushes and curos caps to flush my line line before and after I infuse my fluids. Aquaguard & tape come in handy when I am taking a shower. 

If you are new to central lines or have questions about infection prevention, ThriveRx is hosting a webinar this Thursday April 12th @ 4pm EST titled "CVC Infections: Locking them up". Lloydette and Kristie, two of ThriveRx's Nurse Navigators, have tons of central line experience and can answer your questions after their presentation on signs of infection, ThriveRx's intervention program and the different types of line locks that are available. You can pre-register for the webinar at CVC Infections:Locking them up. Remember, if the time is not good for you, as long as you register a link to the recorded webinar will be emailed to you to watch at your leisure. Also, if you are a medical professional, this webinar will count toward your continuing education requirements.

As with all things in life, good things must come to an end so this spring I will be having my port replaced with a new one that I hope will last as long as the old one. As long as I can keep Living, Loving and Laughing with my Line, I am good to go.

Michelle

My Line Kit

Drinking makes all the difference....

Did you know that 80% of your body is made up of water? Our bodies can't function properly without replenishing the water we lose through digestion, breathing and sweating. While a normal person can replenish the missing fluids by eating and drinking foods with water, for a person with Short Bowel Person this is not so simple. Likewise a person with an ileostomy will not retain fluids because they are missing their colon which is the part of your body that absorbs the most fluids your body needs. 

I have always loved a good cold glass of water and used to drink lots of it before I had Short Bowel Syndrome but I would still suffer from problems with cramping. There were many nights I would wake up in the middle of the night with lower leg cramps that would make me jump out of bed to stretch them out. I would chalk them up to exercising. I never realized that since I was missing 90-95% of my large intestines that I was suffering from chronic dehydration. Since I have had SBS and went on & off TPN and now on life-long IV Hydration supplementation I am more aware of what my body needs and how it reacts to less fluids. Long term (chronic) dehydration can cause problems for your body such as headaches, fatigue, not peeing or feeling lightheaded. If you aren't flushing your kidneys out you can be more prone to kidney stones (if you've ever had one, you will never want one again!). Along with infusing IV hydration, I drink a salt mixture called Oral Rehydration Solution (ORS) that allows me to absorb more fluids in my small intestine. It's a daily effort I have to make to stay healthy and free of cramping & fatigue. 

ThriveRx has an upcoming webinar about dehydration called "Ask the Expert: Hydration Matters on Thursday March 8th at 1pm est.  You will learn the symptoms of dehydration and how ORS helps the body. You can register at this link: ThriveRx Hydration Matters

Keeping our bodies fluids and functions are important to keeping us Living, Loving and Laughing!

Michelle

(if link doesn't work you can always register here - ThriveRx

Rare Disease Day - Wednesday February 28th

#ShowYourRare

*Did you know that there are more than 6000 rare diseases in existence? 

*50% of rare diseases affect children? 

*1 person out of every 20 will live with a rare disease in their lifetime?

*Rare Disease day is celebrated on the last day of February each year. 

*80% of Rare Diseases have genetic origins while others are the result of infections, allergies or                                                                     environmental causes.

No one asks to have a rare disease, I know I didn't. My Crohn's isn't considered a rare disease because  more than 200,000 people in the US are diagnosed with the disease. According to Crohn's Colitis Foundation only 10,000 to 20,000 people in the US have Short Bowel Syndrome, there is no known cure but can effectively be treated. People suffering from one or more of the over 6000 Rare Diseases can have symptoms that vary by disease and by patient. With me the issues and treatments that work with my SBS vary greatly from others that I know. Me and my 79cm of small bowel are able to function without the assistance of TPN while still receiving IV Hydration and fluid supplementation. Others I know with about the same amount of small bowel need daily TPN or nothing at all to help absorb the nutrients we need to survive. 

A Rare Disease can be hard to diagnose and treat due the lack of experienced Physicians when they come across it. Delaying diagnosis can delay treatment which will can affect the patients quality of life. Once you have a diagnosis, finding the right care team can be hard due to physical location of patient to medical facilities, cost involved in treatment, family or monetary issues or a multitude of other reasons. 

Rare Disease day is a day to raise awareness of how the diseases impact the daily lives of those living with them. Raising awareness of the general public and more importantly, researchers, medical and health professionals reinforces the need to research cures to the many diseases. There are still many diseases that have no cure or medicine to help relieve the symptoms. Several of my co-workers and acquaintances are going to their state Capitols to meet with legislators to advocate for the cause. This is not just a day for awareness in the US but around the world as well. When you have doctors and researchers sharing knowledge and information, hopefully more cures or solutions can be found to cure or treat the symptoms of the may rare diseases. 

On this Rare Disease Day #ShowYourRare by posting yours or your loved one story and picture online at https://www.rarediseaseday.org/tell-your-story. change your Facebook or Twitter profiles to show you care. In a perfect world, the number of people with rare and incurable diseases would be diminishing but sadly that is not the case. For all of of those living, loving and laughing with a Rare Disease show you care today by #ShowYourRare.

Michelle

Statistics from www.rarediseaseday.org

Disabilities....some you can't see...

My sons have been involved with the local Special Olympics Ski team for the past dozen or so years.  Alex and his partner started skiing together when they were in 5th grade and stayed partners until they graduated from high school. It took Alex a year or so before he asked me what his partner's handicap was, he knew he was helping "handicapped" people but we never told him how each athlete was different from him. Some disabilities are more noticeable than others and it made me glad that Alex saw the other athletes as people and not for their disabilities. Daniel & Jake have also become Special Olympic Partners and eagerly look forward to Sunday night ski team training as well as the State Winter games in Cleveland. The whole family has become friends with athletes, parents and other partners that we see each year. The team is a huge family that cheers each other on and celebrates their accomplishments. 

No one wakes up one day and says "I want to be disabled today" it just happens, either you are born with it or an illness or accident changes your life forever. Some disabilities are noticeable while others are invisible. If you would have asked me 10 years ago what my life would look like right now, I would never in a million years tell you that I would disabled. When my health blew up, I resisted the idea of filing for disability until I tried to return to work and found actually didn't have the same body & stamina I had a few months prior. I look okay on the outside but the inside is completely different. Some days I feel like my old self but other days I am completely exhausted, dehydrated and need downtime to get through the day. Luckily I have a great part-time job with an understanding boss who allows me to adjust my hours for late mornings or mid-afternoon naps and a very understanding husband who doesn't complain if dinner isn't made or the house isn't immaculately clean. The hardest part about being declared disabled was drastic change in my life. Once my body healed enough to where I could start helping out at the kids schools, running errands and keeping up the house, I found that I really didn't fit in anywhere. All my friends from work were still working there and I was out of the loop, my other friends were working and I didn't know how to find new friends. I didn't know how to explain why I was no longer working and why I was disabled so people would understand that although I looked great on the outside, my body didn't work normally anymore.  It took a while but I found my place and and sense of self again. 

When you see someone out that has a handicap sticker, medical backpack or disability that sets them apart, remember that you can't always see their disability. It hurts when you are judged by others that have no idea what your life is like. When we became involved with Special Olympics I never realized how much it would teach my boys as well as how much the athletes have taught us. They show up  ready to ski with a smile on their face, kind works and an enjoyment for life. Living, Loving and Laughing comes naturally to them and they are an inspiration to everyone around them. 

Love to all,

Michelle

Welcome 2018 and.....Good Riddance 2017!

Happy New Year! I can't believe it's 2018 already  Time really flies as you grow older.  As I reflect on last year I want to apologize for my lack of blogging, it wasn't intentional. 2017 was one of those years I was ready to write off around mid-year. Every time I turned around I felt like I was being handed bad news about the passing of someone I knew and sub-consciously I just took a break from social media. I slowly stopped posting and checking Facebook and other social media sites that I use for support of my Crohn's and Short Bowel Syndrome. I think my mind knew that I needed a break from sad news (although it didn't stop sad things from happening) and wanted to protect me from a deep depression and focus on my boys and family.

When I reflect on those I lost last year there was a wide range of people from family, old friends, family friends and people I have through my advocating. Each death felt like a dagger in my heart. We lost Mike's mom, Lola, early in the year to a cancer diagnosis which took her much to quickly for us to comprehend. Lola was a second mother to me from before Mike and I got married. She was always there for me, Mike and the boys during my Crohn's flare-ups, surgeries and pregnancies. She showed me the love of Filipino culture, food and people. Her deep Catholic faith was inspiring and amazing, she always had a prayer and kind word. The whole family will always miss her.

Way back when when I worked for a health facility, I became friends with TC. She was the first person I knew with a port and it was a long time before I learned she suffered from lupus and was in kidney failure. She was needed dialysis several times a week and already a failed transplant. TC always had a smile on her face and you would never know what she suffered through on a daily basis because she NEVER complained about it. She is a shining example of how to smile through a chronic illness, this is what I from her and will always remember. While sitting outside with my mom not long after my hospitalizations in early 2010, she called me offering her support and love. She had understood what I went through and her smiling voice was a welcome comfort.

There were 2 deaths that really affected me because they both had Short Bowel Syndrome and I had become close to them through my advocacy work. J and his wife became friends of mine while I supported him for his SBS and TPN needs. He would always have something nice to say, was concerned about my health but didn't like to complain about his situation even at the very end. Life was tough for them since they lived in a rural area and didn't have much money, not many in their area understood what he was living with. He was the first person I knew with SBS that had passed away and it really bothered me.

Several years ago my ostomy nurse connected me with Mark. He had gone through an emergency surgery which resulted in SBS, TPN and an ostomy and was finally in a nursing home after an extended hospital stage. He was struggling with accepting his new body, TPN dealing with the ostomy and wanting to get strong enough to go home. We had many conversations on finding a "new normal" and learning how to live with the new way of life. Prior to his death, he had gone in for a bowel re-connection to get rid of his ostomy. I was able to see him while he was struggling with complications from surgery and he was hopeful that everything would turn out okay. At his funeral, his wife told me how much he thought of me and how our friendship had helped him accept and understand his new life.  It still amazes me that I can make an impact on someone's life, I don't go about life with this intent, I just don't want people to feel alone when dealing with Crohn's, SBS, TPN or when going through a major life change.

By August, I was done with sad news and happily watched my niece get married. The Bride and Groom were radiant and are overwhelmingly happy. Sadly less than 3 weeks later my mom called with news that my cousin Karen had not woken up that morning. Karen was more than a cousin, she was a friend. We were in a "Bunco" group that no longer played but instead enjoyed each others company. We enjoyed many lunches and dinners out, her infectious laughter and story telling always made for a good time. She was also the first of our cousins to pass away, her funeral was one of the largest I had ever been to. She had dedicated her life to working with the elderly, her husband and daughters and it showed by the amount of people who came to pay their respects.

As you can tell I really needed time for myself in 2017 and hope that 2018 is much nicer to everyone. I missed many opportunities to inform people of webinars, iv drug shortages, insurance changes and just what life is like living with SBS, IV hydration and an ostomy. I will miss Living, Loving and Laughing with all the ones that have passed on. In my view of Heaven, they are all well and good while Living, Loving and Laughing at and with us from above. In the words of Karen I am hoping 2018 is a "That's Good Stuff" year!

Mahal Kita to all,

Michelle

(Mahal Kita means "I love you" in the language of the Phillipines)

After a long absence - It's HPN Awareness time again!

Hi Everyone,

It's been a year since I've posted 😧 and for that I am sorry. Life had been busy with many things (good and bad) that have went on and blogging just wasn't at the top of my list. So I am going to use Home Parenteral Awareness Month to kick start my blogging again. Home Parenteral Nutrition is IV nutrition given intravenously to those who can't absorb food orally for one medical reason or another. The goal of HPN awareness week is to raise awareness and educate others on the need for HPN.

Most of my friends and associates know the back story of why I have Short Bowel Syndrome,  needed TPN for several years and now require long term IV hydration to avoid dehydration. But for those of you that don't I will give you the shortened version. In 1985 I was diagnosed with Crohn's Disease and over the next 25 years I had several flares resulting in surgeries that drastically reduced the amount of large bowel I had left to less than 10% but was able to function normally, raise our 3 wonderful sons with my husband of 25+ years, work full-time and enjoy a great life. For someone with a chronic disease such as mine, flares, obstructions, medications, hospitalizations and surgeries are some of the things that we deal with on a daily basis. By the end of 2009, I was experiencing periodic obstructions that would clear up in about 24 hours as well as other minor symptoms (fever, pain, etc) that I would ignore or blame on other things.  On a Wednesday morning in late January 2010 started out like any other but by lunchtime a blockage came on more quickly than any other I had experienced before. I went home and tried to gut it out on my own as usual but by the next morning I knew I had to call my GI and head to the hospital. I spent the next week with an NG tube down my throat, on pain meds and being tested to see if we could determine what was going on. On Saturday morning, the attending GI came in and advised me that I needed an PICC line and Total Parenteral Nutrition (TPN) because I was malnourished and wanted to "beef" me up for my upcoming surgery. My sister, Angie, was with me during visit the GI consult and my subsequent freak out about his recommendation. I knew very little about TPN, how it was infused, central lines much less living with it but I gave my consent figuring that after surgery I would no longer need it and could get back to my real life. Wednesday morning was the day of my scheduled surgery but I woke up with the worst pain and stomach distension of my life (including childbirth and kidney stones!). Two days later I woke up in the ICU with an jejunostomy, enteral feeds (tube feeds through my remaining small bowel) and Total Parenteral Nutrition for life. 

Over the past 7 years, I have been able to wean off TPN and stay off for 5 years but remain dependent on IV hydration because my remaining small bowel doesn't absorb enough fluids to keep me properly hydrated. My Crohn's is no longer in remission but is considered "mildly active" so I am on 2 medications to help keep it under control. My son's have grown from small children to teenagers and young men while Mike and I have celebrated 25+ years of marriage.  I enjoy spending time with my family and friends and reaching out to others who I can share my experiences with and make them feel less alone.  I no longer try to picture how Mike and the boys would survive without me but relish in the times we are together enjoying each others company. Without TPN, I might not have had the last 7 years to Live, Love and Laugh with all those around me.

Want a bracelet to show your support this week and all year? Send me a message and I will get one out to you! 

#TPNstrong #HPNawarenessweek #HPNAwareness

August is HPN & SBS Awareness month!

Hello Everyone,

I'm sorry that it has been so long since my last post, life got busy and I keep putting it off.  August is as good a time as any to write a post because it also happens to be Home Parenteral Nutrition (TPN) and Short Bowel Syndrome (SBS) Awareness Month.  Over 5 years ago if you had mentioned either of things needing awareness, my response would have been "Yeah, okay" and not bothered to ask to many questions. But since my diagnosis with SBS and need for TPN I have learned more than I wanted to about both topics. 

Short Bowel Syndrome is exactly what it sounds like. To be diagnosed with SBS, a person only has about 2/3rd of small intestine of a normal person. Most SBS'ers also have problems with malabsorption, diarrhea, hydration and fatigue. SBS is caused by many factors like birth defects, Crohn's Disease, injury, radiation enteritis after chemotherapy, surgery and blood clots. Since each part of the small bowel is responsible for absorbing different things the amount and area of small bowel a person has affects how much food and fluids they are able to absorb to live. Most people have about 600cm (about 20ft) that they are born with, I only have 79cm or 2.5ft. I am able to live without nutrition supplementation but require daily hydration infusions to avoid dehydration. I know of others that have the same about of small bowel and require daily TPN infusion to stay healthy.  Each one of us is different in all aspects of our lives and our intestines are no different.

Some people with SBS require the need for HPN or TPN (home or total parenteral nutrition) to provide the nutrition their body needs to live. TPN was created by Dr. Stanley Dudrick as a way to feed people intravenously when they are unable to eat naturally. Just like SBS there are many reasons for needing TPN such as congenital defects, gastroparesis, and mitochondrial disease. My first infusion of TPN was in the hospital was several days before my surgery that resulted in SBS, the GI wanted to “beef me up” before the surgery since I hadn’t been eating. Little did I know was that infusion would be the first of many in the hospital and then at home. On the first evening at home I received multiple boxes from ThriveRx which held all the supplies I needed for TPN and tube feeding infusions. Talk about overwhelming! Over six years later I am not longer on TPN but still require daily hydration that uses many of the same supplies that TPN does – pumps, tubing, saline flushes, port-a-cathater dressing changes etc.

So it’s fitting that SBS & TPN have the same Awareness Months since they go pretty much go hand in hand. In the 6+ years since I’ve had TPN, my life has changed dramatically. I went from fully healthy to deaths door and back to a “new normal”, I have watched my boys grow 6 years older and celebrate 25+ years of marriage with my husband (who is also my nurse on sometimes). Lately, I’ve been reflecting on my life and where it has gone, never would I have predicted that I would get a sick as I did, stop working and figure out who I was all over again. The end result is that I am happy with my life and where is headed. I interact with many people in similar situations and feel that I have made a difference in their lives. My work as an advocate for ThriveRx is more meaning full than any of my past jobs. SBS and TPN are not ideal ways to live but without both in my life, I would be as happy and content as I feel. Every day that I can Live, Love and Laugh with those I love around me or those that need to feel less alone is an awesome day for me!

@ThriveRx #SBS #SurvivingSBS

Check out the cool video the Oley Foundation has put together for HPN awareness week (I even know a few of of the people in it!)

https://youtu.be/Gj4yX3GBM10

Thank a caregiver!

Happy Thanksgiving 2015! This is by far my favorite holiday, I get to celebrate the day with family, food and the Thanksgiving Day Parade. I've always loved the parade but 2 years ago it took on more meaning as we got to watch our oldest son march in the 87th annual Macy's Parade. Bright and early that cold morning we found our spot along 59th Street and waited patiently for our band to make their way along the parade route. Recognizing our kids and directors march by was awesome after all those hours of practice leading up to that day.

Thanksgiving has become more commercialized over the years with all the early Christmas shopping (I personally consider this sacrilegious, but that's only my opinion) but November is also recognized as "Family Caregiver Month". Caregivers give so much of their time looking after their loved ones that they tend to put their own needs on the back burner, increasing their risk for chronic conditions of their own. This years theme is "R.E.S.P.I.T.E - Care for Caregivers", highlights the fact that by giving your caregivers a time-out to rest and take care of themselves, burnout will decrease and family relationships will strengthen. RESPITE isn't a luxury for caregivers, its a necessity to avoid burnout and prevent medical issues. Just as an ill family member can become depressed and tired of their condition, the caregiver can feel overwhelmed with dealing with doctor appointments, insurance & financial issues, taking care of the home and rest of the family that they forget about themselves. Here are some helpful hints to care for the caregiver in your life:

R - Rest & Relaxation
E - Energize
S - Sleep
P - Programs that can help
I - Imagination
T - Take 5
E - Exhale

As we head into the busy holiday season, take a few minutes to plan a gift of RESPITE to the caregivers you know, whether it's a family member, friend or neighbor taking care of a parent, spouse or child with complex medical issues. Take them shopping, give them a massage or mani/pedi gift card, provide care for their loved ones so they can get a check up, read a book or take a walk around the block, set up a schedule of meals so they don't have to worry about cooking everyday. Sometimes it's the small things that make the difference. By giving so much of themselves, caregivers can help their loved one stay home up to 3 times longer and stay out of hospitals and nursing care. Many caregivers won't ask for things for themselves so do it for them.

I am thankful for all those who have cared for me when I really needed it, their support allowed me to keep Living, Loving and Laughing but was also hard on them. I wish everyone a Happy Thanksgiving to enjoy the people they are with.

Michelle

You can find more ways to support a caregiver at these sites:
National Family Caregivers - http://nfca.typepad.com/nfc_month_2015/
ARCH National Respite Network - http://archrespite.org/home
Caregiver Action Network - http://www.caregiveraction.org/
ThriveRx Caregiver Support Webinar - https://attendee.gotowebinar.com/recording/1975709508217156865

Time for the dreaded scope....

Most people don't get their first colonoscopy until they turn 50 unless they have a history of colon cancer or are having gastrointestinal issues. I had my first sigmoidoscopy at the tender age of 17 in the ER, frightened to death since 1) I didn't know why I felt so bad and 2) I had no idea what a sigmoidoscopy was. That ER visit led to a week in the hospital with more testing and X-rays which gave me an initial diagnosis of Ulcerative Colitis and then further testing a few months later showed it was really Crohn's Disease. Everyone dreads the idea of a colonoscopy because frankly who wants something stuck up their rear end? But I want to tell you that the worst part is NOT the scope but the prep for it. A full day of a clear liquid diet is not fun (yum jello and broth all day!)  and then add a dose of Magnesium Citrate or Miralax on top of that. Once I had Castor Oil as a prep, let me say that was the worst ever, never again! Having had Crohn's for so long, scopes are a part of my life, good or bad, they are what they are, I need them periodically to make sure everything is okay.

So a few weeks ago, I wasn't surprised when my  GI suggested that have an ileoscopy and sigmoidoscopy just to make sure my meds are still working. I was expecting this since it's been 2 years since my last one and  both my surgeon and PCP have been asking when I was getting another one. This past Tuesday I spent 1/2 the day on a liquid diet (the upside of only having 79cm of small bowel and an ostomy!) followed by some Magnesium Citrate to clear things out. On Wednesday, my sister-in-law, Richelle, got the pleasure of taking me to my appointment although according to her it got her out of housework so all was good. We arrived at the scheduled time and waited a little longer than I expected to be called back. The nurses were very pleasant and only needed one stick to get my peripheral IV in. (I could let them use my port but I am very protective of it and and only a few people are allowed to touch it). While I was waiting the Dr came by to talk with me about my procedures; the sigmoidscopy to check on my remaining rectum and the ileoscopy to check on my small bowel. I have no problem with the regular -type scope but for some reason the thought of having a scope inserted into my stoma just creeps me out. By 10am I was in the procedure room and the very nice Anesthetist (ALWAYS be friendly to them, they are in control!) gave me a good mix of drugs to put me out. The meds stung as they went through my IV and the last thing I remember is shaking my hand to get it to stop and I was OUT! Forty-five minutes later I heard someone calling my name and I was in recovery with Richelle sitting next to me. The Dr came around and said the 6" of rectum looked good but the small bowel showed some areas of ulcers. He took biopsies of both areas and said the ulcers could be the Crohn's or a virus. Richelle took me home and fed me and then I took a good 2 hour nap. I felt sluggish all day but I expected that. 

Now I have to wait a week for the biopsy results to come back and am praying that the ulcer's are not my disease. Realistically I know the possibility of them being something else is small but since I am not having any disease symptoms, catching it early would allow me and my medical team to adjust my meds to keep things under control. I don't have much small bowel left to lose so I want to protect it as long as I can.

Many people delay having preventative scopes because of the perceived unpleasantness of them. Ask anyone that gets them regularly, they will tell you that the worst is the prep and the best part are the drugs to put you out!  If you have one scheduled and need a ride, call me, I will take you without hesitation. The "dreaded" colonoscopy can keep many of us Living, Loving and Laughing longer! 

Summer & our anniversary went by too quickly...

It's been awhile since I posted anything. Summer went by way to quickly and was uneventful, no major trips or vacations this year. The 2 younger boys had a short summer due to the schools changing their calendar around. My oldest packed up and moved to college, the mom in me is sad but excited for him at the same time. As usual once school starts our anniversary gets mixed in with all the back to school events. This year Mike and I celebrated our Silver anniversary this year, 25 years! What an accomplishment in this day and age!

It doesn't seem like it's been 25 years, time has gone so fast. We have had the usual ups and downs during our marriage, health, jobs and financial issues like most people. Crohn's was a part of my life before Mike came into the picture and he watched me go through a few flares before our wedding, so he knew what he was getting into. Things happened quickly when I needed surgery within a year of our wedding. We drove to the Cleveland Clinic for a second opinion and we were both surprised when the GI performed a sigmoidoscopy while Mike was in the room. So much for privacy! The surgery went went well and kept me in remission for a few more years when a second surgery was required. My surgeon at the time was concerned about having enough large bowel left to reconnect and said I might have a colostomy afterwards. The thought of having a colostomy at 27 scared me a lot, I perceived it as an "old persons thing" and thought it would be smelly and noticeable.  We still wanted to start a family but knew my health was an issue so I went ahead with the surgery. Even then Mike didn't balk at the idea of me having an ostomy, if it gave me my health back then he was all for it.

After my surgeries in 2010, I started to get more involved in social media groups for Crohn's, Short Bowel and ostomies, it amazed me how many people would post about spouses not being supportive of the health issues, ostomies and the stress involved with living with  chronic conditions. Some even posted that their spouse or significant other left or threatened to leave them if they had an ostomy. It shocks me that people look at the ostomy so superficially. Mike can't believe the posts I've read him either. He doesn't see the ostomy as a part of me, he just wants me by his side.

I firmly believe that I wouldn't be where I am without Mike by my side. He has been my biggest cheerleader, supporter and friend. He has encouraged and pushed me to get healthy so I can be the best mom and wife I can. He encourages me in my advocacy and desire to help others. Things haven't always been rosy but I wouldn't trade the last 25 years with Mike for anything in the world! He has kept me Living, Loving and Laughing (even through the tears) for 25 years and I look forward to many more years with him by my side!

Mike and I last fall.

All my boys! The ones I live for!