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