FMLA Update – Week Two – Five

For the past month of my FMLA leave, I have been trying to balance living in the moment and doing things with friends and family while also taking care of my health.  I’ve begun taking longer walks than I had previously over the past month and even tried some yoga for arthritis.  Though it felt helpful at the time, I woke up in a lot of pain the following morning, so I haven’t felt terribly inspired to try it again.  I have also started to take baths most nights.  The hot water has helped to relieve some of the pain and combined with reading, it helps relax me and allow me to evade the ever persistent painsomnia.

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I have also started to work on puzzles more frequently.  Whether solo or with Alex, they are also a calming activity to use energy towards that helps me focus – especially in days of intense pain.  Since I am not working at the moment, I have been able to put those spoons towards other things – such as visiting with family or doing housework.  Chronic illness has really helped to put things into perspective for me.  I never thought there was going to be a day where folding laundry or emptying/loading the dishwasher would be exciting, but as a Spoonie, I see it as an achievement.

Sometimes, I am still having trouble balancing the number of spoons I use.  It’s not uncommon for me to be in the hospital the week leading up to my infusion.  Because I had energy, I pushed myself too hard the week before my infusion, and though I had fun, I definitely paid for it.  Dinner with former coworkers, dinner with my brother-in-law, his wonderful girlfriend, and her adorable dog, seeing my grandpa for the first time in over a year, hanging out with one of my best friends, and finishing the week with my Entyvio infusion and MTX shot made for a very lazy weekend. 😊  I worked on cross-stitch and dusted off my drawing skills for something my husband and I are working on.  Once I finished the book Big Little Lies, I began the series which is really good so far!  After some rest, I started the next week by having my friend and mentor over for dinner before she moves to start her new venture, which made for a really lovely night.  Later in the week, Alex and I went on a craft date to Joann Fabrics to get materials for a few different projects – he is seriously the perfect person for me!  Since 2+ hours walking around wore me out, I got to start the next day by catching up with one of my other best friends and watching The Bachelorette together over video chat.  She is someone who has always been by my side, and I love that we can still connect, even when we’re not as close location-wise as we once were.

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Medical updates within the past month haven’t been too vast.  I had my first appointment with my new primary doctor – who I learned was originally training to specialize in GI during his residency.  I also made an appointment with a new GI in my hospital system who my primary recommended.  The only other notable update is that once the insurance company processing my Short-Term Disability claim received my files, they decided to look at my records and evaluate my case for both Short-Term and Long-Term at the same time, because they recognize that my conditions – individually and combined – make for a complex case.  I was originally only going to file the LTD paperwork if I need it, but it is nice that I will likely know whether or not that would be approved prior to needing it.  They reached out to my employer for additional information and requested my medical records from both my current GI and my rheumatologist.  They have all of the information they need, and now I am just waiting to hear their decision!

I hope all my fellow spoonies are doing well!

Healthcare Bluebook

In the United States, health care and cost of services can vary between both doctors and facilities.  The most extreme example of this that I have personally witnessed is the cost for both Entyvio and the nurse to infuse it.  I have received Entyvio infusions from four different locations – two hospital outpatient infusion clinics, a doctor’s office, and at home.  The total costs have ranged from $2,500.00, on the low end, to $22,000.00 – for the same drug, with the same premeds, being infused over the same period of time.  The price difference between the two hospitals was even shocking – a delta of $18,500.00.  Thankfully, many biologics and other drugs offer co-pay assistance plans, which have helped a great deal.

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The good news is that you can compare prices for procedures or medications at different facilities to keep from being surprised.  In my role as the benefit administrator for the company I work for, I learned of Healthcare Bluebook during this year’s open enrollment period.  A rep from one of the carriers I work with brought it to my attention.  It allows you to search in your area by either typing in a specific service or by selecting a category such as hospital, physician, imaging, labs, medications, etc.

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Once you search or select a service, the site will give you the low, fair, and high price for the area – 90210, in my example.  Depending on what your searching for, Healthcare Bluebook also offers prices for facilities in the area.

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This post is not endorsed by Healthcare Bluebook in any way, I just wanted to share this helpful resource with my fellow spoonies and warriors!  I hope this helps you navigate the health care system while saving some money in the process! 😊

Infusion Day

Good evening, my hooman friends!  I am Lauren’s puppy doctor – Dr. K-9!

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Nurse Corine was kind enough to take this picture of me and Mom! Don’t I look so darn tail-wagging cute?!

Today was her Entyvio infusion and she will also be getting her Methotrexate injection before bed, so I’ve ordered LOTS of rest.  Her nurse gave her Benadryl before starting her infusion, so my mom and I took a nap on the couch after her infusion finished.  This is the first infusion I got to see, and Mom and Dad said I was the goodest boy and was on my best behavior.  I sat in her lap for most of the time and helped her relax.

I was curious about some of the things Nurse Corine was doing to my hooman, especially when she put a band on my mom’s arm and squeezed a squeaky toy to check her blood pressure.  Nurse Corine let me examine and sniff the squeaky toy and it looked safe, but much different than my toys.  (I wonder if any of my squeaky toys will tell me Mom’s blood pressure… I’ll have to test this out!)

Between resting and working on a puzzle, Mom is working on some new content for the blog that she should have up soon!

De-stressing Family Situations

Hello everyone, Alex here again. Lauren had her infusion today, so I decided to do another edition of Alex’s Caregiver Corner. Today, I want to talk about family and friends, those wonderful crazy people that helped raise you and made you the great person you are. Family and friends can be great, but when you are living with a chronic condition, or if you marry/date someone with a chronic condition, family can be stressful. Even the most well meaning family members can accidentally cause stress. Over the course of meeting, dating, and finally marrying Lauren, I have seen a number of different ways family reacts to chronic conditions.

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First, there is the “My friend cured that with…” aunt. This is the family member who means well and wants to help you get better, but thinks that they have the perfect solution that your doctors refuse to share with you. Normally these people will listen to you and you condition, then come back to you with a homeopathic remedy that worked for their friend. It is not easy to deal with these people. It is obvious that they mean well, but their so called solution will do nothing at best or hurt you at worst. My suggestion to dealing with them is to not get angry and start by explaining the condition you or your significant other has. Help them understand what causing the condition and what you have tried. I have been lucky that when people have made suggestions it was because they lacked an understanding of the difference between IBD and IBS. If they do not listen or if they go Agent Mulder on you and start spewing conspiracy theories about a secret society of gnomes who control the doctors, then change the subject and do not bring up the condition again. It is not worth wasting time on someone who will not listen to you.

The second I’ve run into is the “yes but…” grandpa. This family member can be told about your condition a million times, even witness first had what you or your spouse goes through, but will never understand. They will continuously think that the condition is fake or that they just need to tough it out. Personally, these are the hardest to deal with. In my opinion they can be told a million times the limitations or special diet you need, but still insist that you can eat the giant gluten filled pie with uncooked carrot and then down a big glass of milk. These people just do not want to understand. Be polite, talk to them, but do all you can to avoid there stress and keep your significant other away from them if you can.

The last is my favorite, I call this one the “great saint” mother. This is the person who just understands. They listen to you, provide you with a sounding board, do not over burden you, and are there when you need help or support. The best part is, these people do genuine research to understand you or your spouse’s condition. When you tell them about your lack of spoons, they are happy to step in and take care of things like mowing the lawn, walking the dogs, or just making you a good dinner. When you find friends or family like this hold on tight, they are the best to have around to give you strength and encouragement. They also they come in handy when dealing with the other two.

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Family and friends are wonderful – they are a source of laughter and happiness, and provide a support system when things are tough. However, not all family and friends can be helpful and some can add a great deal of stress. What have you had to deal with in your adventures with chronic conditions?

The Adventure of My Port & Me

February is my Portiversary month!  I have a single lumen power port that was placed two years ago.

Once upon a time, I had good veins that nurses were able to access.  After the many IVs started during my hospitalizations over the four months I had c diff and received multiple potassium infusions (which hurt like crazy) and other hospitalization for my ulcerative colitis, I became quite the hard stick.  The journey to getting my port began during my final loading dose of Entyvio.  On a Friday at the University of Michigan infusion center, five different nurses tried to start an IV a total of six times.  They brought out all of the tools in their arsenal and were still unable to get one started.  The infusion center was closing in less than hour, and I was told that I would need to reschedule my infusion.  Since I am not able to infuse during the week (except for Friday afternoons) due to the way Entyvio affects me, I was quite concerned at the idea of waiting until Monday for my infusion, and the effect it would have on the rest of the week.  Though this is not something that is typically done, one of the nurses was able to schedule my infusion for the next day in the hospital on the Thoracic Intensive Care Unit (TICU) floor in a small infusion room.  This floor had a dedicated IV nurse who thankfully was able to access me in one attempt – using a vein that had never been accessed on the back of my arm.

After my loading doses had finished, my infusions were moved to a center closer to my home.  During my first maintenance dose, there was similar trouble getting an IV started, but since there was more time, they were able to get one started after an hour or two.  Though we had thought about a picc line or a port after the U of M infusion, this is where the conversations truly began.  My favorite nurse at this center was working that day, and she sat down with us to discuss both options in more detail.  With my infusions being every 8 weeks, it was decided that a port was the better option, as it could be deaccessed between infusions.

I brought this up to my gastroenterologist, and he was in full support of a port and referring me to a surgeon – as long as there was evidence the Entyvio was working.  We scheduled a colonoscopy and my first upper endoscopy – as this GI thought I might have misdiagnosed crohn’s instead of ulcerative colitis.  During this scope, my colon looked the best it ever had since diagnosis!  Because of this, my GI’s office set up an appointment for me with their recommended surgeon.  The consolation went great and he made me very comfortable with the procedure.  He even gave me a port that I could look at to get an idea of what would be going into my body (Honestly, it made me think of a mouse! Haha).  He was able to get me on the schedule before my next infusion – which was great!

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The day of my surgery, I was quite anxious, and since they wouldn’t allow my now husband to come back to the pre-op area at first, my anxiety was heightened.  While in pre-op, I debated with my husband whether or not I wanted to do this surgery.  (Spoiler alert:  I am extremely glad he encouraged me to follow through.)  When starting my last peripheral IV, the nurse injected lidocaine in my arm but I could still feel her digging and having a rough time finding the vein.  They ended up giving me two doses of a calming/anti-anxiety medication through my IV, before the surgeon came in the room to talk to me.  After speaking with him, I agreed to move forward with the surgery.  He did say he would check back in with me before I was wheeled down to the operating room, and when he didn’t, I started having a panic attack as they were transporting me.  They ended up giving me a third dose right as I began talking to the doctor and then they pushed the anesthesia.  And then I woke up with a port!  It was not my finest hour nor my proudest moment, but I am so glad that I pushed through the anxiety because the end result has made my life so much less stressful, as well as reducing my anxiety when going to infusions and hospital trips.

During recovery, the site was painful for a bit, but that didn’t last long.  Most of the discomfort was due to the skin being stretched out over the port.  I wore loose tops for the first week or so as that helped lessen the discomfort.  I did ice the site many times throughout the day.  While I was healing, I did somehow pull one or two of my anchoring stitches (the silicone on the side of the port is used to anchor it in place), which wasn’t uncomfortable for long and the only lasting effect is that my port shifts a bit if it’s not being held steady while accessing.

My first infusion with the port – and every infusion after – went splendidly.  I used to always dread infusion days even though it made me feel better because I knew what an affair it would be to get my IV started.  For my first few infusions, I did use the Emla cream prescribed, though I haven’t used it since.  It helped make me more comfortable as I was getting used to the port, so I would definitely recommend it.  One of my nurses suggested covering the Emla cream/port site with the Press’n Seal cling film, which worked very well. If you have IBD and are talking with your doctor and/or a surgeon about getting a port, I would suggest asking it to be placed on your right side.  Mine is placed on my left, and though I was still able to use it, it made things a bit tricky at my colonoscopy last month, as patients need to lay on their left side for that procedure.

Port Accessed

Caring for the port is pretty simple.  Thankfully, since the port is under the skin, there is not much risk except when accessed.  I am able to shower, take baths, or swim without having to take special precautions.  Since my infusions are only every 8 weeks, I get my port flushed and locked with heparin every opposite month.  When I do have a fever or other signs of infection, I have to have blood cultures taken from both my port and a peripheral site to verify that there isn’t an infection in my port.

Whether you have a port, picc, or get regular IVs, you know your veins best.  Advocate for yourself, and when you’re getting a peripheral blood draw or IV, assert that nurses access only the veins you’re comfortable having accessed.  I often have nurses insist that they can get a vein that many nurses before them haven’t been able to successfully access.  I have reached a point where I now stand my ground and only allow them to draw blood or start an IV on select veins.  Thankfully, many nurses I have encountered have the mentality that I know my body best.  I still come upon the occasional nurse who fights back, but I ask for another nurse in those situations.  I really stand my ground because that’s what’s best for me and my body.

Changing the Conversation

Being on multiple immune suppressants, especially in a year where there are so many flu-related hospitalizations and deaths, I work really had to control my environment and limit my exposure to germs.  Even though it takes extra spoons, I always wipe down my desk, phone, and chair at work each morning and at any time it may have been “contaminated” throughout the day.  I also shower when I return home from work or other outings.  Because of this (and my health & fatigue), I am thankful for my work-from-home days and being able to stay at home most weekends, as it gives me a chance to rest and recover from the week.  As I’m sure is the case with many fellow spoonies on immune suppressants, anytime there’s signs of an infection, my doctor has me go to the hospital for a slew of tests, and I am unable to take my medication until I’m in the clear.  There have been cases where there was no infection, but I was still unable to take my medication while we waited for tests to come back.  Though I fully understand this, not taking my methotrexate definitely worsens my symptoms and pain.

Thankfully, my employer is incredibly understanding.  My supervisor is an amazing mentor and since she trusts me and my work, she has allowed me to work-from-home 2 days a week since my health has worsened this winter.  This self-care has been so helpful and conserving this energy has allowed me to increase the quality of my work.  She is also understanding when fellow employees are sick and allows me to work-from-home to protect myself.  Last winter, a colleague on my team was sick when she came back from the UAE.  My IBD specialist was very concerned and wrote a note that I should be working from home for 2 ½ weeks to protect myself from infection.  Though the note helped, my director was very understanding and respected this anyway.

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Earlier this week when I was remote, a co-worker I share an office with notified me that someone had been coughing near my desk, so I could take proper precautions when coming in the next day.  He also offered to wipe down my desk after the coughing and again before leaving for the day – which I totally took him up on!  With the flu and other winter colds circling around, I was nervous returning to the office the next day, but it was a necessity.  Another precaution I take is wearing my Vogmask, though I had only worn it once before in the office.  I typically used it for hospital trips, doctor’s office visits, and the occasional errand.  Because the next day was pay day and passing out checks is one of my responsibilities, I knew I would have to take this extra measure for my health and safety.  Though I was nervous of how team members might react or what they might say, I would much rather wear a mask than catch the flu that is going around this season.  I only encountered a handful of employees the previous time I wore it, and I received multiple questions and comments.  Because of this, I was a bit self-conscious going into the day, as I knew I would be interacting with all of our company’s employees.

Though I was nervous, I realized this was a moment I could embrace as a chronic illness advocate and use it as an opportunity to change the conversation.  For a long time, my immediate team and a few work friends were the only ones who knew of my health hurdles.  In the past 6 months, I’ve become more open and vocal about my story and experiences.  Along with my Vogmask, I put on my “Ask Me About My Colitis” shirt from the Great Bowel Movement, whipped my hair into a Katniss-esque braid, and prepared for my day.   Many people genuinely were concerned about my health – thinking I had caught the flu.  When asked about my mask, instead of being ashamed, I was able to educate people about IBD and other autoimmune diseases and how the medication I take weakens my immune system.  Everyone was extremely supportive, commented on the cute pattern, and some even said they are interested in getting a mask of their own with how bad the flu is this year.  It was a very pleasant surprise – I know that I work with such high-quality people and this experience confirmed it.

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I actually ended up not passing out checks, because though I had my mask, my team was still very concerned about me getting sick, and offered to do it for me.  I was also told that I could go home and work remotely for the afternoon and Friday because of how many people were sick in the office.

Overall, this was a great experience!  I pushed myself out of my comfort zone to advocate for the autoimmune community and I feel so proud.

 

**If you are interested in getting a Vogmask, “sickchicks” is a promo code for $10 off that is good through February.  I am not employed, sponsored, or affiliated with Vogmask.  This is just a tip I saw in a support group I’m in from someone else who is also not affiliated with Vogmask.  I just wanted to pass the savings along!

My Home Infusion Experience

I have tried my fair share of medication to find the right one(s) – including Humira, Remicade, and Entyvio.  Humira provided some relief, until my 4-month bout of c. diff – afterwards increasing to weekly injections without a difference.  During my last “loading” dose of Remicade, I began having drug-induced Lupus symptoms.  Though I’m not at 100%, Entyvio and methotrexate have reduced the inflammation and the amount of ulcers in my colon.

Until this year, my Entyvio infusions were in an out-patient hospital setting in one of the main branches of my hospital system.  Due to changes in coverage with Blue Cross Blue Shield, this was no longer covered, but they do cover home infusion care.  Especially with the current flu epidemic, I was more than happy to avoid the hospital and relax in my home.

5. Infusing

Because I was notified of this coverage change in advance, and I knew how long changes in care can take to process, I reached out to the home infusion provider in November 2017.  Unfortunately, I was still following up to get the order processed and authorized by insurance the week before my infusion.  Thankfully, once everything was processed and I was called by scheduling, there was a nurse available on Saturday and I had my pick of times.  With how close we were to my infusion date, that was my biggest concerns, so I was relieved when my appointment was finally on the books.

There were a few things that were different (and initially concerning) that I learned from the scheduling call.  The biggest one was that this company doesn’t use an IV pump to administer Entyvio since it’s infused through such a short time period.  Since I have always infused with a pump, I was nervous how they were going to time it for it to run at the correct rate.  Day of, I learned that instead of a roller clamp, the tubing had a twistable clamp with a variety of mL per hour measurements noted around the circle.

5. IV-Entyvio

Three days before my infusion, the company sent over my Entvyio, pre-meds, an anaphylaxis kit, and any other supplies needed for my infusion – including an IV pole.  Because I wanted a pole of my own with wheels, I ordered one (and a small folding table for the nurse to use for prep) on Amazon Prime.

5. Supplies Delivered

The nurse I ended up having for my infusion was extremely nice and very helpful.  Because I had gotten mixed messages from the company on whether or not my husband could be trained to flush my port, she walked my husband through the process step-by-step and wrote out detailed notes, just in case.  The infusion ran really smoothly, and it was interesting to see how the process differs from facility to facility.  I was nervous before the infusion, as I’m normally used to nurses who are balancing multiple patients, but I would be happy to have her as my reoccurring nurse.

5. Supplies Set-Up

It was a very smooth experience, and I am excited that I can continue my care at home.  Anyone who is considering home infusions, I would definitely recommend it if your insurance covers it.