I thought it would be fun to highlight some new earrings in the shop I’ve posted. This new batch has T.E.N. new styles! Woohoo! Here they are:
Faux Leather Styles
Demeter Style Earrings These Earrings are just so lovely and are the sister earrings to the Aphrodite Earrings. The pink floral pattern has little scarabs and ladybugs flitting through the flowers and vines.
Aphrodite Style Earrings The Aphrodite Style Earrings are a beautiful compliment to the Demeter Style earrings. I just love the gold foil and pink combo of both of these earrings.
Golden Bee Earrings These pretty golden bees feature a little rhinestone in each wing that catch the light. If you’re a bee lover, you definitely need these in your life!
It’s amazing how quickly the world turned upside down. I live in Utah and two weeks ago I went into isolation. Turns out my main hobbies are shopping and having the freedom to go wherever I want. Ha. Fortunately, I can work from home for the foreseeable future, which has been nice. But I miss going out and running errands and visiting shops and not being scared that everyone I see will have an illness that could kill me. Wow, how’s that for dramatic. Haha. But still kind of true.
And because an apocalyptic plague isn’t enough going on, on March 18th, Salt Lake had a 5.7 earthquake to shake up our quarantine. Yeah, not a fan. I prefer my quarantines stirred. Despite being from California, this was my first significant earthquake. It was not a fun way to be woken up. 5.7 is moderate and we had a few decent aftershocks. Fortunately no damage at my house and no injuries or deaths. So, really, it wasn’t that big of a deal, but I learned I do not like earthquakes. I was so stressed the whole day and my body was really struggling to handle the adrenaline. And keep thinking I feel aftershocks when there haven’t been any. #feelingshakencrazy #andstircrazy
Map of some of the earthquakes in Salt Lake City on March 18, 2020.
As you may recall, I recently wrote about my primary immunodeficiency. It specifically leaves me vulnerable to lung infections, which is what COVID-19 is. So that’s fun. Utah has started to see the virus spreading in the community, but the next few weeks (months?) of isolation will be crucial to keeping the virus from swarming the community and overwhelming hospitals.
I’ll be honest, it’s been hard. If I catch it, I’m at a higher risk of complications, particularly because of my mast cell disorder. Will I have anaphylaxis to the treatments? Will I even have access to the medical treatment I need? Will I be deemed worthy of medical treatment if medical resources run thin or the system collapses? Will I also be asked to “sacrifice” my medical treatment or medications for some hypothetical future treatment for others? (Also, WHAT?? It’s insane that a pharmacy/insurance would deny a current medication of a patient and then have the gall to thank the patient for their sacrifice.)
It has also been really difficult to find safe food that I can eat. Stores have been sold out of a lot of things. Right after the Governor announced a significant social distancing effort, the stores were picked clean. And running from store to store is not the best idea. This weekend I missed getting to see a play I had been looking forward to for months and months–the show has been completely canceled. I’m so sad. Sad for me, but also sad for the theater and the actors, and technicians, and everyone who has lost jobs. It’s heartbreaking that so many people have (hopefully) temporarily lost their jobs because public places have shut down. Church has been canceled. Temples have closed. Life feels really hard right now. I know this is temporary, but it is reality.
Seeing all the empty shelves was disheartening
Entire aisles were empty.
Fresh produce was pretty picked over
Empty Shelf where my safe almond milk should be.
Last Jar of peanut butter in the store. But there was no bread. I got the peanut butter anyway.
I have my six-month check-up with my immunologist and get my Xolair shot (I get it every month) this week. I sure hope I still can. My risk for anaphylaxis goes up significantly if I’m unable to get it. I’ve been trying so hard to eat safe foods and avoid things that fill my reaction bucket so I don’t end up in the hospital. Stress is a big trigger for me, so you can imagine how well that’s going. I’ve taken a lot of Benadryl in the past few weeks.
I called my pharmacy this past week to make sure I’ll be able to get my medicine. They said yes, but they can only provide a 30 day supply of my hydroxychloroquine–even with my doctor ordering a 90 day supply–per a state order (because there’s an unsubstantiated rumor it will help patients with the virus). It worries me that something will happen and I won’t be able to get my medicine. This particular one is critical for keeping my body stable. I once accidentally forgot it for a week and my body was a complete mess and I thought I was going to get hospitalized. Fortunately, within a couple of days of restarting, I was feeling better. Within a week, I was back to my normal. I don’t want to go through that again. My body is already on the edge, I don’t know what it would be like if I didn’t have Xolair or hydroxychloroquine.
While working the other day, I was listening to the Hamilton soundtrack and the phrase “A world turned upside down” has been stuck in my mind since. It sure feels like that right now. It feels so scary, confusing, and overwhelming. I went and made my one weekly trip to the store yesterday and wore my mask, per usual (people still wear perfume, ugh), and people actively ran away from me. Geez Louise, if I had the plague, I would not be in public! That was fun. Oy.
Silver Lining
But the world also feels slower, kinder, more patient, and more moments of peace. I read a post from a woman living in China where they’ve been in a harsh lockdown and she said she’s lived in the city and never knew there were birds in the city. The pollution has gone away there. It’s gone here too.
People are home with their families. People are getting outside and enjoying spring weather (with social distancing!). Kids playing outside. People are finding clever ways to celebrate milestones, birthdays, and weddings. People are sharing more uplifting content on social media. And there have been some hilarious memes! I love all of it.
Painting together over video chat
My oldest niece turned 8 a few months ago and we’ve been planning a special “Gr-8 Adventure” in a couple weeks to celebrate that involved me flying to Sacramento and then us spending time in San Francisco and doing other fun things that she wanted to do. Unfortunately, the trip was canceled due to the virus. Everyone was too worried about me traveling to a virus-infested place. We were both disappointed. Last week I saw a free watercolor painting class given by an artist I love and thought it would be fun for my niece and I to do together via technology. We set up our computers so the instructional video played at the same time and then we painted and talked together (double monitors for the win). It was such a fun couple of hours. Despite the 800 miles and virus that separate us, we were still able to do something fun together.
So, how am I doing? Pretty good, considering. I’m pretty well unaffected. I’m still working. I am pretty introverted, so I have a pretty low-key social life anyway, so not missing much there. Hahaha. But I do miss Church and the Temple. I miss being around people (when I want to be, lol). I miss shopping. I miss not disinfecting everything whenever someone comes over. I miss having breakfast and lunch cooked for me at work. I miss the conveniences. I miss Amazon Prime being 2 days. Lol.
Praying for Guidance
Today we’re having a worldwide fast for all those affected by the virus. For the medical personnel on the front lines, for the government leaders, for the patients and their families, for those that are economically affected. It has been beautiful to see people come together, regardless of their faith, to pray and fast for help and guidance from God. (Fasting from food is really hard on my body, so I’m fasting from something else.)
I was recently reading my scriptures and read about a young man who was asked by God to do something seemingly impossible. Something the man didn’t know anything about. He and his family were far from civilization and he was asked to build a boat so his family could sail to a new, promised land. He didn’t even have tools. So in faith, he asked God where to find the materials so he could make the tools. He didn’t question the direction to build a boat. He didn’t say, okay give me tools for this impossible task. He said okay, help me find the materials so I can make the tools. Help me know how to put the boat together.
To me, this felt like such a direct correlation to today. God has given us all the material we need to fight this virus. We can do the seemingly impossible, we just need direction from Him on how to put it all together. We need guidance on how to help ourselves and our families build whatever boat God is trying to help us build in our lives. And we can, with His help.
In time, life will go back to what it was. Doctors will find the answers to this virus that helps save us from it. This will not be what ends all life on Earth. Overall, I am optimistic. I have faith and peace that God knows what is going on and He has His hand in this.
Maybe we just needed something to help us reset our lives a little and help us turn our hearts a little more towards Him?
And here are some of my favorite memes because that is how I am coping with life right now. hahahaha!
Today (Leap Day!) is Rare Disease Day so I thought I’d share my experiences having a Primary Immunodeficiency and being on immunoglobulin therapy. Two years ago I started weekly immunoglobulin therapy. It’s been quite the journey.
Getting a Diagnosis
When I was diagnosed with MCAS in the Fall of 2015, one of the things my immunologist and I discussed was my frequency of chest colds. Blood work looking for immunodeficiencies was normal (of course they were, sigh). Over the next few years, I continued to get chest infections that would trigger mast cell reactions. After several rounds of immunoglobulin labs with normal results (ugh), my immunologist wanted to try another round of labs that involved getting vaccinated. The lab tested my levels of response before and six weeks after the pneumococcal vaccine. I had little response after. And I anaphylacted to the vaccine. Ah, so not only is my body “blind” to pneumococcal, but I’m allergic to it. Of course I am. So no more pneumococcal vaccines for me. But I definitely recommend and encourage other people to get vaccinated, if you can!
We *finally* found the answer! I have Specific Antibody Deficiency (“SAD”) and my body doesn’t see streptococcus/pneumococcal bacteria. Basically I get chest colds almost anytime anyone sneezes near me. Getting the diagnosis was like another piece of my medical puzzle clicked into place. And yes, my family has teased me plenty for having a SAD diagnosis on top of everything else. Hahaha
Some months before, my doctor and I were discussing alternative treatment ideas. I felt like I was not getting ahead of my MCAS reactions. I had been doing some research and had heard some people had good luck with IV immunoglobulin (IVIG) therapy, so I brought it up to my doctor. He hedged a bit and said that he wasn’t aware of any studies that showed IVIG as a treatment for MCAS. He didn’t think my insurance would cover it, since it wasn’t an FDA approved treatment, and he warned it was expensive.
Getting Started
With the new diagnosis of SAD, I was now eligible for immunoglobulin therapy to be covered by my insurance (not all insurances cover SAD). Whew.
Treatment for immunodeficiencies is immunoglobulin therapy–which is derived from human plasma–which is donated, like blood donations. Plasma is processed and filtered to get just the immunoglobulin. Then 10,000 or more donations are combined together in order to get adequate immunoglobulin coverage. IVIG is typically administered via an IV once a month. Basically this treatment is supplementing and boosting my own body’s immune response. It’s covering the gaps. You can learn more about it here. There has been a national shortage and some people haven’t been able to get their infusions (I’ve been lucky). Please donate, or encourage others to donate!
My doctor and I discussed IVIG options and he felt that monthly IVIG would be pushing my body too much and not protect my immune system enough before the next dose, so we decided weekly subcutaneous (SCIG) infusions would be best. They can be done at home and the immunoglobulin is injected with small needles under the skin. They generally are tolerated better and are easier to manage. Both of those sound good to me!
The kind nurse wrapped the needles up so we didn’t have to use Tegaderm adhesive during my first infusion. I later learned how to avoid reactions from the adhesive by using Cavilon wipes.
So we gave it a try. The drug company provided a 4-week trial while insurance approval was pending. I started the Cuvitru trial within a week of diagnosis. The company made arrangements for a delightful nurse to come and teach me how to do the infusions.
My insurance approved immunoglobulin therapy. Yay! But they wouldn’t approve Cuvitru because it wasn’t on the formulary. So I was going to have to switch to Hizentra–a comparable immunoglobulin with preservatives, something we were concerned I would react to. Ugh, but okay.
Then I tried to make arrangements for a nurse, the medication, and the supplies–all of which are necessary. (The nurse was necessary till I felt comfortable doing the infusions on my own. Now I only use them occasionally when I need to do them in my back.) Well, the only “approved” pharmacy that the insurance would approve to distribute the immunoglobulin wouldn’t provide the nurse or the supplies. What?! And the insurance wouldn’t approve me to use the infusion clinics that were on the in-network list?! WHAT?! At least 65 phone calls later (not exaggerating, I counted), I was finally able to get an exception approved to use an infusion clinic on the approved list. I hope you hear my eyes rolling through the computer. It was painful and so frustrating. BUT, it got taken care of in time that I didn’t miss a weekly dose. Whew.
When I got my first statement from the pharmacy I was shocked. It was just under $20,000. For ONE MONTH of 25 grams of Hizentra immunoglobulin and supplies. The supplies were only $200ish. Fortunately, with my insurance coverage and then the copay assistance coverage from the pharmaceutical company, I only pay a tiny portion of that.
I just got my next summary statement from my pharmacy. They forgot to bill me for supplies, I think. But my medication is $4,430 a week. That’s $221.50 per gram. Just for perspective, the price of gold per gram (as of this post) is $51.07. Yeahhhh. There’s a reason immunoglobulin is nicknamed “liquid gold.”
The latest statement from my specialty pharmacy. Insane, right?!
Treatment
My leg with the infusion set up and going. This time it was 6 sites. If sites ever fail or started leaking, I can cap them off, but that means the infusion will take longer. I try really hard not to have that happen.
Right away I noticed I was not tolerating the Hizentra as well, but I wasn’t having severe reactions so I had to stick with it. Thank you benadryl (new band name; I call it!). Because I was doing infusions by myself, I could only do them in my abdomen or thighs. It became quickly apparent that my infusions are way slower than they should be according to some magical math equations. We still don’t know why what should be a 2-hour infusion takes almost 5 hours. So we tried adding more needle sites to try to speed it up. So at one point, I was doing 7 sites a week. My abdomen wasn’t having it. Every time I did it there, I would end up with horrible bruises, swelling, and itching that would last several weeks. I finally just stopped doing it in my abdomen. For over a year, I did infusions alternating between each thigh and changing the sites’ locations.
My leg after a particularly rough infusion. Site reactions are normal, but this was was coupled with other MCAS symptoms too.
During all of this, my pharmacist was fantastic. He has worked so hard trying to find ways to make this work for me. Trying different needle lengths (switching between 9mm and 12mm) and flow rates. Trying varying numbers of needle sites and locations on my body. My immunologist over time also lowered my dose a few times to see if that would help too. But over time, the infusions in my legs became more and more painful to the point that my thighs constantly ached all the time.
I told my immunologist my concerns and he thought it might be time to switch medications to Cuvitru (the preferred medication). But remember how the year before it wasn’t on the formulary for my insurance? I reminded my doctor. “Formularies change. I think we should at least ask. Sometimes they’ll approve it if they know you aren’t tolerating the approved one.”
Lo and behold, they did approve it! And they covered it! (That was also a big concern.) So I switched and it’s been much better. I have also reduced the number of sites down to four and just deal with the infusion taking 5 hours every Saturday evening. These together have helped and my legs only sometimes hurt now. I think what has happened to my legs, especially my left, is that the weekly puncturing with so many needles has caused scar tissue to build up. If I pick the wrong spot, it can be really painful to try to insert the little needle.
Let me just tell you–there’s helpful introductory video that one of the drug companies created that shows how to do an infusion. But it also cheesily shows a man strolling down the street all casually walking his dog like it ain’t no thing to be pumping medicine into his abdomen. “You can do anything while you do infusions!” Ha! Yeah right. I feel yucky during and after these infusions. And generally do not feel up to strolling down the street. I have run some quick errands, but try not to do so. DoorDash is the best on Saturday nights. 🙂 And then I sleep for 10-14 hours after. It’s exhausting.
My pump, pump bag (underneath the pump), thermometer, and a little storage container full of odds and ends like alcohol wipes, cavilon wipes, bandages, gloves, extra supplies, etc. The drug company sent me a free laptop type bag to store everything in. Makes it easy to travel with too! And yes, I’ve flown with my medication and supplies–it wasn’t a problem!
A month worth of medication to be stored in my fridge.
A month worth of supplies. I also have tons of extra supplies on hand because sometimes something is missing or I accidentally contaminate something.
Kitting my supplies into weekly bags so each week I have everything I need for that infusion. Makes things a lot easier!
Two Years Later…
My current regimen is 20g of Cuvitru weekly. The goal has been to find the lowest level of immunoglobulin I need to stay healthy. With the severe cold I got this winter, I think we might have hit my lower threshold. Bummer. I was hoping to get to a lower dose (lower dose = lower cost). Oh well.
But overall, the immunoglobulin therapy has helped so much. I haven’t gotten sick nearly as much, or as severely. Getting sick was a big trigger for me on several levels–so eliminating that has kept me out of the hospital and anaphylaxis free for 18 months. A new record! As hard as this treatment can be, it’s been worth it.
Unfortunately, right now there is no alternative way to treat primary immunodeficiency–which is why additional awareness or additional research is needed. You can support patients like me by donating plasma (sometimes you can get paid for it!) or donating to organizations like the Immune Deficiency Foundation.
In 2019 I thought I’d keep track of the cost of chronic illness, or at least mine, for a year. Keep in mind this year I was pretty stable AND I’ve gone a whole year without an ER visit and anaphylaxis. Winning!! The last time I went a whole year without an ER visit was when I was in high school. My doctors and I are all thrilled about this.
It’s important to know that I have really good health insurance through my employer. I will fight tooth and nail to keep working so I can keep my insurance. My insurance is generally very good about covering whatever I need. They’ve pushed back on a few things, including iron infusions this year, but nothing that was critical. Unfortunately, this year they changed how they were billing some of my more expensive medications and that has increased my actual out of pocket expenses this year. (I barely squeaked in hitting my out-of-pocket maximum and had it cover my new BiPAP machine. Whew.) In past years, with basically the same treatment plan, I hit it in May. And next year my out-of-pocket maximum is going up by almost $1000. Which means, unless something drastically changes, I won’t hit it next year. It’s hard not to hit my out-of-pocket max–I really love having my insurance cover everything at 100%. 🙂
Medical Bills
Any guesses what my doctors billed out?
$295,000. For a year. To keep me stable. $225,000 was prescriptions. Painful, right?
It was a cheap year too. No procedures or surgeries in 2019. (In 2018 it was about $400,000.)
My actual out of pocket expenses were around $5,000. Some of that was covered thanks to prescription co-pay assistance programs put on by the different drug companies that make my medications. Plus whatever over-the-counter medications or supplies I bought that didn’t go through insurance.
I don’t know what the answer is for health care in the US, but I have no idea how people with chronic illnesses who are under or uninsured are expected to be productive, healthy members of society.
Anyway, back to the numbers for a “normal” year where my doctors consider me stable. Remember, stable means not getting worse. I still regularly have reactions to whatever my body wants to react to.
Other Costs
I thought it would be interesting to keep track of how much medication I took and how much effort I had to put into staying as healthy as I can.
Benadryl is the biggest rescue medicine I use. Whenever I start having a reaction, I take 50mg (2, 25mg pills) of medication. So 318 really reflects 159 doses. Fortunately, we found a new-to-me mast cell stabilizer that is helping (Ketotifen) and since starting it in September I have needed less Benadryl. Which is good, because there is a concern that frequent use of Benadryl can lead to dementia. Goody.
The same counting thing happens with Tylenol. I usually take 2, 500 mg pills, so it’s really 127 doses.
I keep a list of all the medications I’m on or use as needed. We added a few this year. I’m now on 28. Sigh. We’ve tried to take me off some of them. It didn’t work out.
For fun, here’s a photo of all the pill bottles from all my medications this year. This doesn’t include all the immunoglobulin vials from my weekly infusions (that just seemed excessive to keep, hahaha).
73 bottles. 16 bottles were just Zantac. And this photo doesn’t include the 36 syringes of Xolair that I got at my doctor’s office over the year.
In my doctor’s appointments numbers, I include the weekly infusion treatments that I do at home.
It’s exhausting trying to keep everything scheduled and straight in my calendar. I also included the time and energy for phone calls and emails between me and my doctors and the insurance company to be part of the cost of chronic illness. Chronic illness takes so much effort and work to manage. Nothing ever is easy and takes multiple contacts to arrange, approve, finalize, or confirm. It’s a massive energy cost.
But It’s All Worth It
Good news is that all of this resulted in:
0 ER visits
0 hospital stays
0 events of anaphylaxis
0 chest infections
1 minor cold that I got over in a few days
1 week of prednisone (that’s a normal course for a significant reaction)
Those are some excellent stats. It makes all the above-listed cost of chronic illness and the overwhelming amounts of medication and time feel worth it.
Today I’m sharing some Egret Orchid Stems made from paper and wire. Such a fun project to put together. I’m pretty happy with how they turned out!
A real Egret Orchid. Such a stunning flower.
I have a friend that is a plant killer (her words, not mine) and I wanted to give her a plant she couldn’t kill. I also wanted to try out making out a 3D flower and thought I’d make my own design.
Looking online at different flowers, I came across this beautiful Egret Orchid and knew this was the one I wanted to make.
How I Made Them
I took the photo of the Egret Orchid and imported it into my Silhouette Software and traced it, fiddling with the settings until I got a version I was happy with. I also had to simplify the cut lines and delete a bunch of edit points to make the shape manageable. I used this tutorial from Silhouette School (love that website!) to learn to trace images. I use this function all.the.time. I even trace shapes from my library if I need an outline. Such a versatile function!
Once I had the top wing portion and the bottom petal portions created, I found some other orchid shapes in the Silhouette Design Store I could use to create the rest of the orchid shape. I cut them out, inked them for dimension, and glued them together.
The vase was really easy to put together. I inked the paper with several colors to give it a cement look and then glued the pieces together. Inside the vase is floral foam to hold the wire stems. Next time I would put the floral foam inside before I put the vase together. It was a little tricky getting the floral foam inside the narrow top. I also would have liked to have weighted the bottom with something so it wasn’t quite so light. I did pour some of the little pebbles in the bottom, but that’s not enough.
I used the leftover hexagon from the top of the vase to cover the floral foam. I covered it in the black rocks and poked some holes where I wanted to place the stems. I then stuck the leaves in. I used hot glue to secure the stems and leaves and added more rocks to cover the glue.
Vase with floral foam to hold the stems and leaves
Hexagon center covered in small back pebbles to cover the floral foam
Vase with the hexagon cover put in place.
Wire stem structure
Stems wrapped in floral tape and stuck in the vase.
To create the two main stems, I took a three-foot piece of 12 gauge floral wire, folded it in half, and then twisted it to make it stiffer. For each of the flower stems, I took shorter pieces of 22 gauge wire and did the same thing and wrapped one end around the 12 gauge stem, leaving the other end free. One branch for each flower or bud. Then I wrapped the whole thing in floral tape to make it look like one stem. The twists in the wire give the stem a cool, natural texture. The flowers are hot glued to each of the smaller stems.
The leaves were simple. I wanted a leaf that was similar to the Egret Orchid’s actual leaves, and found one in the Silhouette Design Store. I elongated them in Design Studio and cut them in a medium green paper. Then added several different green inks to give each of them dimension. I cut lengths of 22 gauge wire and attached them to the back of the leaves with hot glue. I left the wire longer than the leaf so I could use it to stick into the floral foam. When the glue was dry, I used the wire to shape the leaf so they had some life.
Leaves in the Vase
Leaves in the Vase
Paper Egret Orchid
Side of Paper Egret Orchid
Back of the Paper Egret Orchids
I’m pleased with how the paper Egret Orchid stems turned out. Figuring out how to do the flowers took me a long time, so I’m really happy with how they turned out. I learned some things and next time I’ll do some things differently, but I thought this little project turned out pretty good.
