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!

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?

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.

Slug blood

Now that we’re a couple of posts in, I thought it would be a good time to regale you with a tale of one of my many misadventures.  Since I’m on a biologic and methotrexate, my rheumatologist has instructed me to go to the Emergency Room for labs, blood cultures, a urine culture, and sometimes a chest x-ray any time I have a fever.

One day this past summer, I was feeling really dizzy and had a temperature of 102.5*F.  A doctor at my local ER ordered all the tests above as well as fluids.  Since I have a medical port (which I plan to discuss further in a later post), I have cultures taken from my port and a peripheral site.  The nurse cleaned both sites before collecting the samples.  They kept me overnight for precautionary IV antibiotics and discharged me the following day.  Blood cultures take about 5 days to receive results – at least in my hospital system.  During this time – and until I got a negative culture – I was not able to take my immune suppressants.  Because of this, my pain and other symptoms increased.

I received a call the following week letting me know my peripheral culture grew, but it could have been a contaminated sample.  They wanted me to return to the hospital to repeat both blood culture samples.  I was initially admitted, but I fought to be discharged as the culture wouldn’t be back for days and they did not have a care plan in place.

The results for the second culture were released during an appointment with my rheumatologist, so she gave me the news.  This time, the sample from my port is the one that grew.  The bacteria were found to be Moraxella osloensis – a mutualistic symbiont of a slug parasite.  Since this was way out of my doctor’s wheelhouse, she called one of her friends who is an infectious disease doctor while she was still in the room.  Neither could figure out how this bacterium was introduced into my central line and the other doctor wasn’t able to get me on her schedule until 7 days later.  There were concerns from all ends of what would happen if it were in my blood and if my port would need to be removed.  Back to the hospital I went…

During this trip, I had one of the best nurses I’ve ever had.  She was unbelievably understanding and wanted to make sure this was the final round of my blood culture battle.  She wiped down both areas multiple times to avoid any contamination.  She also used a pediatric blood culture set for my peripheral draw, as it wasn’t giving her much of a sample and she didn’t want to have to poke me again.  As I said, one of the best nurses I’ve had.  Thankfully both samples came back negative for any growth, and I was in the clear to begin taking my medication again!

Being off of my meds for about 20 days was very difficult, as I’m sure you can imagine.  When getting cultures since, I always make sure they wipe down the area thoroughly twice to avoid a repeat of this situation, and so far, it’s worked! (Fingers crossed!!)  Please learn from this, and never be afraid to speak up.  You’re your own best advocate!

And still no answer to the slug-killing-bacteria contaminated sample…