#ChronicallyIllAndThankful Posts

A few days ago I mentioned that during the month of November I would be posting daily one thing involving or surrounding my chronic illnesses that I am grateful for.

Below you can read the posts that I have shared.

Day 1:

Today I am grateful for physical therapists.
About 6 weeks ago I started physical therapy. I am going to be honest, I out it off for a really long time because for a long time we thought I had “just intracranial hypertension” and i didn’t understand how a physical therapist could possibly help me in that situation.
But now that I’ve seen a physical therapist I understand that physical therapy isn’t just for people who have just had surgery and/or some major life alter event and need to relearn how to use certain muscle groups or regain strength in those muscle groups.
It is so much more than that. It’s about preserving quality of life and advocating for their patients. It’s about helping in anyway they can.
Today, I woke up feeling like complete trash. I debated all day canceling my physical therapy appointment but at the end of the day, I decided to go and when I got there, I was still feeling like trash and she could see it written all over my body. the way I was sitting in the lobby, the way I stood up and remained standing when she called me to come back… and she asked “ok, well what can I do to help?” and even though last weeks session consisted of weight resistance training and working on balance (because my balance is nothing short of awful due to my intracranial pressure you guys!) this weeks session involved a lot more massage to help with my unimaginable pain level and for that I could not be more grateful.

Day 2:

Today I am grateful for the love of my father.
I am ALWAYS grateful for the love of my father but being chronically ill has helped me appreciate his love in ways I don’t think I would have had I not been chronically ill.
He is incredibly observant in ways that completely blow my mind. A lot of the time he knows me better than I know myself. He truly is my very best friend.
My dad has never once made me feel like I may be a hypochondriac. During the long last three years when *I* have frequently momentarily lost hope, he has remained hopeful & encouraged me.
This week has been really hard. I haven’t felt good. my pain hasn’t been well managed. I’ve been really nauseous which means i have no appetite… But my dad is right beside me encouraging me the entire way. Reminding me to drink things other than water (because if it were up to me i would only drink water. why is anything else necessary?) & reminding me to eat… (because eating when you have no appetite it’s a real struggle let alone when you have no appetite and the thought of food makes you want to vomit…) I truly don’t know where I would be without my dad. For him I am forever grateful. Today and every single day.

Day 3:

Today I am grateful for weekends.
Like most people with chronic illness, I use my weekends to rest & recuperate from the weekend before while also trying to prep for the week ahead so that I can try to make the next week as easy on my body (& my family) as possible.
I mentioned yesterday that this last week was a rough one, so I was in bed before 11:30. I slept until 8:30 when I woke up to take my morning steroids & use the bathroom & I was feeling fairly decent. I don’t know if that is because I didn’t give my body the time to wake & truly get a sense of how it was feeling… or if I truly felt fairly decent, but the rest of my family was still asleep & like I said, the week has been rough so I decided to rest some more. …when I woke up again much later, I felt like complete trash… the worst I felt all week. I’ve been dealing with awful stabbing pains in my head that get worse upon sitting up or standing, awful nausea, fatigue, etc.
my body was making it blatantly clear that it needed to rest… so i gave it what it needed.
My one major struggle though is that while i am resting, or suppose to be resting, my mind is constantly running through the things I COULD be accomplishing with that time. which not only makes me feel like trash about myself but also makes it difficult to relax and actually rest… Do you ever struggle with that? what do you do to overcome those feelings?
i try to remind myself that my body is fighting really hard so rest is incredibly important… more important than folding the clean clothes that are in a pile in front of my closet door.
I also try to remind myself that there are two days in a weekend… which means if I rest now, hopefully my body won’t need to rest quite as much tomorrow & I’ll be able to accomplish some of the things on my to do list tomorrow.
Of course come Monday, the weekend has gone by incredibly too quickly but I think that is a natural feeling whether you are chronically ill or not. But a short weekend that goes by too quickly is better than no weekend at all!

Day 4:

Today I am grateful for social media.
Obviously there are both good and bad aspects of social media, but for the most part, I have been able to keep my distance from the bad parts.
in June of 2016 I started a support group on Facebook for those with Idiopathic Intracranial Hypertension called IIH Warriors. It has since grown to more than 1900 people.
It’s groups like these and Instagram that have helped me meet people who understand what I am dealing with on a daily basis. People I can commiserate with when I am frustrated. People I can go to for advice while I am waiting to hear back from my doctors office. People who help me feel less alone. People who offer encouragement and support.
I have lost several (in real life) friends since becoming ill which makes me even more grateful for the friends I’ve made through the chronically ill communities on social media. 💜

Day 5:

Today I am grateful for my brain. For knowledge and wisdom and the ability to make medical decisions for myself.
I mentioned a few days back that i’ve been diagnosed by my Electrophysiologist (a fancy cardiologist) with Inappropriate Sinus Tachycardia.
More or less that means that my blood pressure is low, my heart rate is high… a lot. not just when i change positions.
So he prescribed me Ivabridine because I am already on a low dose beta blocker at night (Propanol 20mgs) to help bring my heart rate down to help me sleep and he didn’t want to increase it any more for fear or lowering my already low blood pressure… But Ivabridine caused a mast cell reaction which put us back at square one.
His nurse then called and asked to prescribe me the beta blocker I am already on (Propanol) at a much higher dose because he forgot that I was on it & why we didn’t want to go up on it…so i had to refresh her memory so she could refresh his. & when she called back today she asked if I have ever taken Atenolol (another beta blocker) because i guess he would like to try another low dose beta blocker 12 hours after the Propanol (because Propanol works as a sedative so we don’t want to use it during the day because it will increase my already difficult to overcome fatigue)… Whether your health is complicated or not, doctors and their staff are very busy and deal with A LOT of patients every single day. Your only priority is YOU so it’s much easier you to catch slip ups… which is a good thing! We don’t need a doctor prescribing a high dose beats blocker (and sedative) causing already low blood pressure to become even lower causing more fainting spells. If something isn’t right, don’t be afraid to ask questions or say something!

Day 6:

Today I am grateful for my ability to vote.
What a lot of people fail to realize is that despite the fact that everyone has the RIGHT to vote, not all citizens have the ability to.
And I don’t mean because they can’t physically be or get to the polling stations because there are accommodations for that.
I mean that there are a lot of people in our community who will very likely never vote due difficulty understanding the voting process &/or what they are voting for/against.
This hits really close to home for me because both my brothers have fetal alcohol syndrome & their voices will likely never be heard by our democratic system. But that is what motivates me to get out & vote even more!
Today, I was able to get a last minute doctors appointment with the director of a motility clinic in Indianapolis, an hour and fifteen minutes away, very last minute. I found out about it at 12, the appointment was at 3. We were in Indy until 4:30 and we have to be in line to vote no later than 6:00 in order to vote. We made it with 10 minutes to spare. We then proceeded to stand in the cold for the better part of an hour because the line was not only curled around the hallway in the building, it was also wrapped around the outside of the building.
But what really matters is that we were able to vote. Not only for ourselves but for those who can’t.

Day 7:

Today I am grateful for all hardworking, diligent, helpful hospital staff.
Yesterday I mentioned I had a last minute doctors appointment an hour and a half away… But I didn’t tell you how that came about… a couple weeks ago i was suppose to have the smart pill test done, but four days before the “procedure” hospital staff contacted me to let me know that insurance had denied the “procedure”, but that the director of their motility department had requested a peer to peer appeal (i’ll be honest that I am not entirely sure what that means… a couple hours later, my local GI doctor called to let me know that (despite being very hung ho and… certain of himself and his abilities in the beginning) he was releasing me from his service and referring me to the motility clinic under the care of Dr. Wo.
So I was a sitting duck for several weeks while I waited to receive a call to schedule an appointment with Dr. Wo. and as time continued to pass… I finally decided I would call myself so I go online and looked for a number to call.
Turns out that number was not the number I intended to be… Instead of reaching the scheduling desk at the motility office, i instead spoke with a tech who performs tests in the motility lab.
She was able to go in and see that despite my local GI saying he was referring me to the motility clinic and releasing me from his service, no referral was sent which is why no one ever called me to schedule. She then suggested that I call my doctors office and request a referral and then call Dr. Wo’s nurse and request she reach out as well. She then said i should hear back from someone no later than Thursday… And if i don’t to please call her back and she would try to help in any way she could figure out to help. But to please call her back anyway just so she knew I had been helped.
It’s not very often you come across hospital staff that cares that much.

Day 8:

Today I am grateful for a sense of humor!
It is so very important that you find a reason to laugh every day.
Whether it’s with those around you or occasionally at yourself (or both 😉), laughter is the best medicine.
Almost every night before bed, my dad will come in to my room and say good night to my cat (because my cat is the most spoil with love cat I have ever met!) and myself. And tonight while we were saying goodnight my cat was being an over tired toddler and cracking us up and I literally did a spit take while trying to take my meds. And that caused my dad and I to laugh even harder.
Those moments, they turn into memories and when you look back, you aren’t going to remember the pain you were in, you are going to remember the laughs and the smiles and how loved you felt.

Day 9:

Today I am grateful for my dad’s trade skills. His passion turned career.
My dad owns his own business rebuilding, painting, and working on cars. He does everything with the exception of upholstery (and even that he has a guy for). And he is really good at it. Like REALLY good at it. He has only every put quality over quantity and his customers respect that and return because of it.
And there are obviously a lot of perks to owning your own business (there are a lot of draw backs too, but we are gonna keep this positive). This business, working from a two story shop we built on our property, being his own boss, making his own hours, etc. It’s been a bigger blessing than we ever could have imagined. It has really allowed him the flexibility he needs to take care of his family.
If my brothers or I have a doctors appointment, he has the flexibility he needs to take us. If something comes up and my grandma needs his help, he has the flexibility he needs to drop what he is doing and assist her wherever she is.
And earlier this week I mentioned that we were able to snatch a last minute appointment with a specialist 3 hours before the appointment and the specialist was an hour and a half away. That meant he needed to close down early, shower and get cleaned up, pick me up from work, and drive an hour and a half at literally the drop of a hat. Most people don’t have that luxury. And if it weren’t for his business, we would have had to wait until at least the middle of December (which was an appointment with a different doctor in the same department) if not longer (to get an appointment with the same doctor, instead of a different doctor in the same department) for the next available appointment.
This isn’t the first time something like this has happened and I am certain it won’t be the last. I am always grateful for my dad and the sacrifices he makes for our family. I can never thank him enough.

Day 10:

Unfortunately I am having so phone issues so I have been having issues with posting… so I am playing catch up on posts.
Today (and every day) I am grateful for my dad.
I know that I have posted previously about aspects of my dad that I am grateful for… because I he makes a lot of sacrifices for our family and we cannot thank him enough for the things he does for our family.
I know I am really truly blessed to have a supportive father. I know that not everyone does.
I know not everyone does. I know not everyone has even a supportive mom and/or dad there to lean on when things get tough (whether it’s chronic illness related or not). I know not everyone has family that a.) believes their sick, b.) understands their illnesses (whether that be because they never tried to understand or because they just don’t get it…) and/or c.) cares their sick.
I know how truly fortunate that I am to have a father who has never once questioned whether or not I was sick. I know that I am fortunate to have a father who is always there, day or night. I know I am fortunate to have a father who will drop anything any everything to be there for his kids.
We are so incredibly lucky to call him our father… I can’t emphasize it enough how grateful I am for him.
He really, truly does qualify for Worlds Best Father and I couldn’t be more grateful to call him my dad.

Day 11:

Today I am grateful for the two friends that have continued to make an effort during this season of my life.
Don’t get me wrong. I know that I am fortunate to have ANY friends remaining after this three year journey. And I do understand that communication is a two way street.
Being apart of this chronically ill community and running a support group online has taught me that a significant portion of our community is not so fortunate.
They don’t have the fortune of having friends that still invite them to do things even though they may not be able to attend. They don’t have the fortune of having friends that check in on them from time to time. They don’t have the fortune of having friends that just make some kind of effort.
I recently published a blog post that discussed how coping with our chronic illness isn’t only hard on us, it’s also hard on the ones we love (and that includes our friends) and that can manifest in conversation in three different ways:

1. Unsolicited advice.
example:
“You should try praying!”

2. Unintentionally dismissive
example:
“At least you don’t have cancer”

3. Outright Ignoring/Silence

And while everyone copes differently… That doesn’t mean that you have to continue to put effort into a relationship that is stressful for you… especially during this season.

Day 12:

Today I am grateful for my fur baby, Rawry.
Rawry came into our lives in late June/early July of 2015… Just one (technically two) months before I got sick and we have been inseparable ever since. He travels with us almost everywhere.
Since becoming sick, he has always taken good care of me. Whenever I am at my worse he doesn’t leave my side… even if that means laying on the bathroom floor with me.
He has woken me up several times when I have slept through the alarm that awakes me up to take my steroid which has kept me safe and prevented me from falling too low.
He has sensed my heart rate was too high and laid on my chest as if to say “mom, don’t you dare think about getting up! you stay right here!” He has also been there when I came around from a seizure/episode and it was very comforting and reassuring.
He came into my life at the perfect time and has been the best companion and fuzzy friend a girl could ask for. I couldn’t be more grateful for a grey, fuzzy, little guy.

Day 13:

Today I am grateful for my initiative.
If I did not grow up with my (step) mom constantly pushing me to not procrastinate and take the initiative to do things without being asked, I don’t know where I would be today.
A lot of navigating todays medical industry requires you to not only advocate for yourself but also for you to take initiative and make sure that things are getting done. Doctors are SOOOO busy.
Lets do some simple math for a minute… We are going to calculate how many patients the average doctor sees in one month.
Lets clarify that this doctor is a specialist, not a primary care physician (PCP). Lets say that a doctor sees a different patient every 15 minutes. They work from 8-5 Monday-Friday and generally they are running behind due to trying to give their patients the attention they need so they end up working through their lunch.
So they work 9 hours a day. They can see 4 patients in an hour. So they see roughly 36 patients a day. Multiply that by 22 working days in the month (Monday-Friday, not weekends) and we get 792 patients.
792 patients to try to keep track of diagnoses (and not only the diagnoses they are responsible for but all diagnoses), tests ordered and the outcomes of those tests, medications prescribed (and not only the medications they have prescribed but all medications prescribed), treatment plans… etc.
There are bound to be some mix ups and confusion. Doctors are only human just like the rest of us.
So all of that goes to say that it is incredibly important to take the initiative to document everything you talk about at your appointments so you can then take the initiative to stay on top of the follow through. Stay on top of making sure that any tests that needed to be ordered get ordered and scheduled and the results are discussed… Stay on top of referrals. Stay on top of medications and making sure the prescription is written the way that you discussed at your appointment. Etc

Day 14:

Today I am grateful for technology and my knowledge surrounding technology.
Technology has allowed me to monitor my health at home and allowed me to document aspects of my health and provide “proof” of my symptoms and ailments to my doctors.
I have used my smart watch to track and document my heart rate which showed both bradycardia and tachycardia and encouraged my doctor to order a 2 week long holder monitor and a tilt table. These tests ruled out POTS and gave me a diagnosis of Inappropriate Sinus Tachycardia. After almost 2 years of heart palpitations and chest pains that felt similar to a panic attach I finally had an explanation for my low blood pressure, dizziness, heart palpitations, and pain (among other symptoms). Symptoms many doctors brushed off because I have a history of anxiety.

Day 15:

Today I am grateful for my perseverance.
I have been sick for almost three and a half years. It has taken almost the entirety of those three and a half years to find a team of doctors that aren’t constantly trying to pass me off to someone else like a hot potato due to the complexity of my case or chooses to completely blow me off all together.
I encourage you to read about my medical journey over on my blog under the medical history tab if you haven’t already… it is infuriating and heartbreaking all at the same time, but here I am, three and a half years later… still standing. Still getting up every morning and dragging my butt to work. Still adulting.
And that’s not to say that the hard work is over. Because I definitely don’t think it is. I’m sure that the hard work has barely just begun… But I have persevered through some pretty tough moments in life… my success rate is 100% so far.

Day 16:

Today I am grateful for patience.
This is a quality that I have often struggled with.
Our bodies need patience and time to rest so they can recuperate.
Our bodies need patience and time to heal.
NOTHING happens after night no matter how badly we want it to.

Day 17:

Today I am grateful for not having to set an alarm!
During the week I have to set multiple alarms. 1 to take my steroids (cortisol) prior to getting up and then I roll over and fall back to sleep and I need multiple alarms to wake me up to get me going.
I use a “silent” alarm which actually causes my phone to vibrate to wake me up. My phone charges wirelessly so it sets on my nightstand. Which makes the vibration much louder.
I do prefer this over a musical alarm because the musical alarms became very very irritating. No matter what musical alarm I used, the rude awakening would ruin the song for me. I just couldn’t enjoy it anymore.
The silent alarm I use, while less irritating, is still an alarm.
I am grateful that on the weekends I only have to set one alarm to wake me up to take my steroids and then I can roll over and go back to sleep and sleep for as long as I like without any alarms sounding to wake me up!

Day 18:

Today I am grateful for family dinners!
It is a tradition with in our family weekly dinner at my grandma’s house when she is home.
Grandma is a snow bird so she is only home for 6.5 months of the year.
This makes us cherish these family dinners even more.
Ever since I have become ill and began to struggle with GI issues, my grandma has tried to accommodate me whenever she can.
For example if I can’t eat stake because it is hard on my stomach so she will offer an alternative. And if I can’t eat something she makes, she doesn’t take it personally.
Family members who get it, are so very special.

Day 19:

Today I am grateful for persistence.
A couple weeks ago I completed a 24 hour urine analysis for my MCAD doctor at RUSH Medical who is 3 hours away. She gave me paper orders which I turned in to the lab at my local hospital with the jug of urine on a Sunday afternoon after completing the analysis.
About a week later I received one test result back.
Leukotriene E4
I continued to wait for the remaining results:
2,3 Dinor 11B Prostaglandin F2A, Urine
N-Methylhistamine, 24-hour Urine
Prostaglandin D2 (PG D2), Urine
Two weeks pass & I don’t hear anything so yesterday I called to check on these results. I get a reception desk. I ask to speak with the lab. She calls back to the lab & come back on the line & tells me I can’t speak with the lab… that I need to call the doctor that ordered the tests for the results.
I tell her that she doesn’t have the results & that I need to speak with the lab. So she puts me back on hold & goes to speak with the lab again. This time I am on hold much longer, but the lab tech finally picks up & she is clearly not happy about it. I explain to her my situation… that I dropped off a 24 hour urine several weeks ago but have only received one test result (this doesn’t seem to set off any alarm bells)… she again tells me I need to contact the ordering doctor for results.
I ask her if I can come pick up the results and she tells me no. I ask why I was able to be sent one of the results via MyChart but not the rest… She says she doesn’t have access to MyChart so she doesn’t know what I was sent, but that I will need to contact my doctor for the results. I tell her to hold on & I will log in. I do & I tell her that I received the Leukotriene E4 results & that was it. She then tells me THAT WAS ALL THAT WAS ORDERED.
I said um no… It wasn’t there were three other tests ordered. She said well that’s all we have here in the computer…
I said just because that’s all you have in the computer doesn’t mean that’s all that was ordered by the doctor. I have it right here in the electronic copy of the orders… (by this point I had logged out of my IU Health MyChart & logged in to my RUSH MyChart because I no longer had the paper copy because I turned it in with the jug of urine…) I then asked how we go about getting this corrected because I needed all of the tests completed… & she asked me for my doctors fax number so she could fax my doctor the results of the Leukotriene E4 and then call and explain what had happened and request new orders so I can redo the 24 hour collection for the remaining tests that needed to be done again…
I asked her how they were suppose to have fax my doctor the results in the first place if they never had her fax number to begin with!
Persistence is key. You can’t always take everyone for their word. If something feels off…continue to push.
This is post 19 of many of my November series called

Day 20:

Today I am grateful for a short work week!
Tomorrow is the last day of the work week. I get a much needed four day weekend and I am so so so ready!
This weekend will allow me some much needed rest and family time. It will also allow me to decompress and plan and organize for the holidays and vacation coming up!

Day 21:

Today I am grateful for seat heaters.
Today, as predicted, I was released from work early and we took advantage of that and ran some errands.
Unfortunately as have been struggling with some really bad hip pain that has begun radiating into my back as well. Being in the car and unable move much definitely does not help this pain, but the heat from the heated seats definitely is appreciated.

Day 22:

Today I am grateful for a lot of things.

I am grateful that I was able to obtain my degree despite all the things that were working against me at the time… (limited resources, trauma, unmanaged chronic illnesses…)

I am grateful to not only have a job in the field I obtained my degree in but to have a job I love.

I am grateful to have a boss who is understanding and flexible (of all things from anxiety to chronic illness to work/family balance.) •I am grateful to finally have doctors in my corner who get it and aren’t blowing me off, treating me like a complicated hot potato, and/or telling me it’s all in my head. Doctors who are fighting for better quality of life long term.

I am grateful for friends who stuck around when shit got rough. Friends who check in and let me know they are thinking about me.

I am grateful for family who just get it. The ones who didn’t have to wait for a diagnosis they could Google to believe I was sick.

I am even more grateful for family who will go out of their way and put in a lot of time and effort to help preserve your quality of life and give you back some independence…

The goal of the #ChronicallyIllAndThankful Challenge was to help the chronically ill community (and myself) realize that it is possible to be grateful for the life lessons and values that your illness has taught you.
For examples:
Perseverance: When a doctor told you that you were “fine” but you continued to not feel fine and continued to fight for the answers you deserved.
Initiative: Learning that you have to take notes during your doctors appointments and take the initiative to follow up on referrals and prescriptions being called in, etc.

That being said, I think it is completely healthy and acceptable for you to be thankful for the things that your illness has taught you but to still be angry with your situation and grieving the future you had planned for yourself and/or wishing for a cure… Just don’t unpack and live there for the rest of your life. Take the things your illness has taught you and put them to good use. Use the pain for a purpose.

 

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