Today, I am FINALLY feeling HUMAN.
I mean, with all things considered.
Whatever my daughter had, it decided to include myself and the other half in the mix of sickly soup.
It turned into Sinusitis, along with some triggered vomiting and the neverending supply of… bowel movements.
[Awesome]
So, with today being a much better day, I can now catch up and share!
Happy Friday, Friends!
xoxo
What do you do when your wee one gets ill?
Out of the blue, her appetite decreased and she became listless with the worst number 3 ever having witnessed.
She can barely keep her eyes opened at times.
I feel so bad.
So sad for her.
Harloh still manages to have moments of hilarity and laughter. She still smiles and giggles, even with her eyes rolling into the back of her head.
Patience is so important when your toddler is sick. Especially when you can only do so much to make them comfortable and put their mind at ease… when they are borderline terrified to even go to the bathroom.
When they make messes they cannot control.
Talk softly.
Breathe deeply.
Hug them.
Love them.
And snuggle up and watch their current favorites with them:
Disney’s Muppets Most Wanted is a fun movie for the whole family. I loved the choice in casting Ricky Gervais, Ty Burrell, and Tina Fey as the lead characters, along with Ray Liotta, Danny Trejo, and the fabulous Jemaine Clement. We have watched this film three days in a row, courtesy of On Demand. AND, today I accidentally discovered an easier way to create GIFs on my tablet!
Harloh also really loves The Wiggles. So, even though we couldn’t, she felt like dancing.
We are really hoping our baby girl starts feeling better by the end of tonight – Cannot be sick for Disney!
After much anticipation, the day finally arrived.
The day four Humira pens made contact with my skin.
The swelling lumps were hard before falling asleep. The burn lingered within each one for some time after.
Today, they are not so bad.
Today they are bruising and the knots have practically disappeared. A little tender. But, what can you expect?
It’s been about a solid 24 hours since the injections.
The second dose is two Humira pens on the 15th (which counted, comes out to 14th) day and it just so happens it lands on the day my daughter and I are going to Disney with my parents.
Haven’t fully figured out how I’m going to work it in the schedule.
But, as everyone else has said so far: Let’s hope the pain and discomfort is worth it.
Trying to stay positive and hopeful!
With the lingering remnants of bronchitis, I have allowed myself to slip back into a reclusive status. It may not be the most healthiest in terms of social communications and friendships, however, this time is not that much of a bother to me.
When you get sick so often, it can become a challenge to keep up with all that is planned. There are times where we sickly individuals peak – not questioning for a second where the surge of energy came from – only to have it depleted just as quickly.
Finding the days ahead one continuous test of patience, will, and stamina.
Trying to prepare for the next big rush.
One big challenge for myself right now is keeping up with schoolwork. The feeling of failure comes and goes. I try to stick to my weekly/daily schedule and even with my agenda and goals laid out in blue ink, my lists continue to lengthen.
In the words my daughter seems to enjoy using as of late – “It’s Not Fair!”
But, that is life, right? It was never meant to be ‘fair’. It is meant to be lived…
Failure is not acceptable.
Failure does not seem like living.
I cannot pinpoint what it is that has handicapped my ability to concentrate and focus on one thing at a time (I am beginning to sense simple predisposition over IBD), but whatever the problem is, it is not helping with the move forward. I keep getting further behind because I start one task only to not finish it before another.
Such as reading.
When you have the ability to stay awake and be alone long enough, opening a book is more enjoyable than turning on the television.
In fact, lately my house has grown more quiet.
Along with reading up on Ulcerative Colitis, I continue to indulge in the world of Buddhism and True Crime.
True Crime is my number one category (to be expected from a horror junkie? hmm?) in the world of casual reading. Really, it falls in with the need to know everything.
Who? What? When? Where? WHY? All the common Ws. The one positive thing about holding interest in such books, is a lot are composed of subcategories and broken down into more chapters. So, once you leave off somewhere, a new tale begins.
As for Buddhism, I continue to skim through Amazon’s library (via the Kindle App). I often get lucky and come across books that are free. It may seem cheap of me for someone so interested in such a subject, but, when you are tight on money and not quite sure what you are really looking for, free is wonderful.
Like, Buddhism Made Easy.
It is regularly priced at $7.85 via Amazon Kindle, and I got it for free. Just by browsing. The book so far is not too terribly bad. As the first 6-7 chapters are spent repeating itself before getting to the point, the author still manages to keep me engaged.
My carousel is a growing collection of freebies and 99 cents-ers.
Being only on chapter 9 (page 26/121) of Buddhism Made Easy: Buddhism for Beginners and Busy People, I also have the following books opened and marked:
The Zen of Zombie: Better Living Through the Undead, page 73/263
The Angry Gut: Coping with Colitis & Crohn’s Disease, page 125/322
The Giant Book of Unsolved Crimes, page 150/567
Your Body Speaks Your Mind: Understand How Your Thoughts and Emotions Affect Your Health, page 87/245
With Spotify on and an incense burning, determination has rolled over me yet again.
It is time to roll up the hypothetical sleeves and bury myself deep in sentences and punctuation.
It is time to get this final over with, so I can move on to the next section of schoolwork.
It is time to be by my lonesome.
To push harder.
To release the anxiety.
To be peaceful.
May your Wednesday be grand 🙂
It is awfully funny how, when covered by decent insurance, it is almost never used. Besides the hypothyroidism and the occasional desperation to relieve the back pain (and those fun lady annuals!), visiting a doctor did not happen too often.
Now, fast forward where I have no job, numerous doctor appointments a month, and have to rely on state aid… well, mostly ‘medically needy’. The amount of hospital/medical bills I have accrued since 2012 has been depressing. Until recently, I didn’t even have an actual insurance carrier through Medicaid because we were bringing in too much, so the only real option was going through clinics and the dreaded health department.
Hell’s Central Nervous System.
Every three months having to get up super early to renew my health card.
Seeing several doctors with hardly any bedside manners.
Waiting anywhere from 45 minutes to 2 ½ hours to see the admitting nurse.
Get told the medications I am on are pretty alien to them – even though we go over the prescriptions at every visit.
Most recently, I had to go back to get a PPD (tuberculosis skin test) and Hepatitis B blood test done so I can start the Humira that has been sitting in the refrigerator for two months. On top of it, not too long after getting out of the hospital, I developed a very obnoxious cough and inconsistent sore throat, so it seemed convenient to go over this, as well.
THE RESULTS
— PPD was quick and almost painless. In-and-out both times.
— The nurse who assisted the doctor mentioned to me that a simple phone call for my Hepatitis B results is all that was needed.
Well, when calling to get said results, I was immediately interrupted by the receptionist to make an appointment – in which I informed her of what the nurse had told me. She then put me through to the nurse line and it went straight to a message.
Later in the afternoon, my phone call was returned:
“Hello, this is L___ with the S______ County Health Department, is this Stephanie?”
“Yes it is. Hello, L___.”
“I am returning your call about some lab work you had. Now, what is it the doctor needs to know?”
*really?* “…….. We need to know if I tested positive or not so I can start taking my prescription.”
“It shows you do not have it. You did test positive for the antibodies. Were you ever vaccinated?”
My Response: “Yes. My mother was pretty positive she got us vaccinated.”
What I Wanted to Say: “Did you take one of those nine months courses? Even I know that means I was vaccinated at some point…”
— This cough the doctor said was just a cold that needed to run its course – it is now much worse. I fear another sinus/upper respiratory infection. This morning was greeted with a very sore and swollen throat. The 50 shades of phlegm are starting to concern me along with the sinus discomfort and chest pressure.
I suppose when you work for the health department, caring for your patient and their well-being is not top priority. Most everyone that is employed there seems miserable and unfriendly. You never feel welcomed and it is as much of a waste of time for you as it is for most who work there.
There is a couple of pluses in all this.
After much searching, I found an Urgent Care Clinic that will take my insurance in the city over (only 20 minutes away), which I will be venturing to in order to get this sickness under control. I also came across another doctor that is NOT part of the Health Department. AND, since we are starting to be able to deposit money back into savings again, once this insurance expires, we have discussed finding an affordable health care plan to break free from state aid.
This whole process has been infuriating, aggravating, mind-numbing, tear jerking, and draining.
As promised, today we made some (but, not all) princess finger puppets.
The idea came from the issue of Princess magazine that my sister gifted my daughter.
I traced the two main shapes (the head and body) on a thin piece of paper and cut it out. Harloh then informed me on what princesses she would like to make: Aurora, Belle, Cinderella, Ariel, and Rapunzel.
So, while she was playing in her room, I got to cutting out the pieces. Instead of just felt, these were made from thin colored foam as well. Thankfully, we have a nice selection and different shades to create with.
Cutting everything out was a little more time-consuming than originally believed.
One-by-one, I glued the two pieces for the body/dress of each puppet (minus the bottom, to slip in her tiny fingers) and let her do the rest. Harloh had a blast putting these together and they came out great. I held the glue because it is near end and either came out too slow or too fast, but she let me know where the glue was to go and her favorite part was the hair and drawing in the eyes.
One of the extras I cut out was the hands. Probably a little unnecessary, but the wee bit of perfectionism in me said to do it. So, I listened.
After this weekend, I promised Harloh we can do Tianna, Elsa, Anna, Jasmine, and Snow White.
These projects are so fun and will say:
I am rather lucky to have the ability to spend this time with my daughter. It may not always be rainbows and butterflies and some days are worst than others, but these moments make up for a lot of the misery and pain.
The last two days consisted of errands and doctor appointments, dragging around a toddler from beginning to end. My body and mind are beyond exhausted and this cold that has been developing is a slow torture.
Yesterday, was my follow up with the GI for the short hospital stay a couple of weeks ago. We went over the “game plan” for the upcoming months. Once I FINALLY start the Humira (at least another two weeks, now), he will be needing bloodwork done every month for three months to monitor how my body is responding. Then, I get to partake in another colonoscopy and all its glory, including biopsy.
One of two scenarios can happen:
If my ulcerative colitis is responding well to the new treatment, there is no negative effects to the neighboring organs and my biopsies come back clean, lab work will slow down to every few months.
If my ulcerative colitis is not responding well and my biopsies come back unfavorable, he is thinking surgery.
Needless to say, I’m going to continue crossing my fingers in this matter. The idea of surgery frightens me. I couldn’t even joke back when the doctor tried to make light on having no colon. See, my daughter arrived via cesarean section and even that was difficult for me. If you were to slice a finger open or lose an eye in front of me, I’d be alright. If I slice my finger open or were to lose an eye, I’d probably vomit and pass out.
Today’s doctor appointment was a follow up with my primary. He pretty much confirmed what was expected. This horrible hacking is nothing more than a cold that needs to run its course. He set me up for the PPD (tuberculosis test) and Hepatitis B bloodwork. The only thing is – it can take up to two weeks to get the results for the Hepatitis B and will not be able to have the PPD done until Monday.
Sigh.
Seeing how my daughter had to put up with all this traveling and in-and-outs, I had to make it worth her wild. We went to the hobby store and Dollar Tree for more craft supplies. She was rewarded with one of her favorite meals -pizza. We even went to the newly renovated library for books. Even this time, I decided to check out what they had for reading material on ulcerative colitis. Granted, what few books were found are a little dated, but they are something.
She was very well behaved for the most part. The best you could ask for from a toddler.
Now, she has drifted off to sleep while I type this from my tablet, drinking hot tea with lemon and honey from this monstrous mug one of my close friends had gifted me for Christmas. Tired and comfortable, I hope to drift off soon…
Goodnight, Friends.
*Warning: Slight tangent rant*
Every single time I start to feel better, I do too much.
You would think I learned by now. But, the fact is, I hate feeling like an invalid.
Yesterday, I started with a simple scrambled eggs and bacon breakfast for the family. We ate and got ready for the day, which consisted on going to grandma and grandpa’s house. Seeing how my father is behind on getting his paperwork together and organized, numbers situated and inventory properly accounted for, I told him I would help him set up some sort of organization and spreadsheets until getting an accounting software with the appropriate functions for a small business.
Harloh and I arrived at my parents a little before 10am. I wasn’t going to bring her, however, I knew my parents would be a bit bummed if I didn’t.
Not too long after arriving, things went sideways. Apparently, the man who came and installed my parents’ Verizon claimed that their DVD player was too old to hook up into their new HD Smart TV. (Seriously, I would throw the remote into this television if I owned one. Who really needs Facebook on their television?) Anywho, they are slowly getting into the times of the 21st Century and do not own an HD DVD player, so this man automatically assumed because it wasn’t HD, it wouldn’t work… WRONG. It took me, who has very limited knowledge, to figure this out. Now, I am not saying this man was lazy, but at the same time I am. I know it really isn’t their responsibility to make sure a DVD player is working, however, do not tell my parents incorrect information if you do not really know if it will work.
That is irresponsible as a professional.
Then, my father and I decided to go to Wal-Mart to purchase some ledger paper to start the bookkeeping process and breakdown of the months. This became an adventure.
Wal-Mart had a very small selection, which was not very surprising. While there we each picked up a couple of items that were needed for our own personal use and headed to the next interstate exit for Office Depot.
While there, I decided to check out the accounting software. Holy. Priceness. It’s astounding how much they charge for these programs, especially when you have a very small business that is steadily growing. To my surprise, my father actually asked someone for assistance to go over the programs and let me do most of the talking (not to sound ridiculous, but numbers are my thing) and the sales associate pretty much told him the same thing I have been trying to tell him for almost two months: Excel. I do not fault him, though, because he has always been stubborn and he is not too familiar with many programs. However, I have quite the background with numerous softwares and Excel itself, so….
The point is, surprisingly, he purchased it!
Now, when we get back to the house, it is already about 12:30pm and we have not accomplished really anything. At all.
To make me feel old and completely out-of-touch with the way things work now, the basic disc was not supplied. It was a card with a product key to download and install. The instructions said it would automatically update and show up in the system, however, after a few minutes, the only way I could use the program was online! What is going on?! A simple install became a nuisance because nowhere does/did it say that you had to restart the computer. No-Stinking-Where. It was a bit of a blow to my confidence because I know the disc versions you always had to, but here it made it seem as if it was supposed to magically pop up on the desktop.
Sigh.
So, we finally have it on the desktop, free of being online, and I start to layout the spreadsheet and go over with him on how I am going to initially organize these.
All the way back from March. MARCH. I didn’t realize it went that far back.
It got to the point that I decided to just take it all home. I know my father. He will just get frustrated because he is hasn’t been out of the two-digit typing stage long and he squints at the computer, even with glasses on – I cannot help but laugh at him for this. It is pretty funny.
We didn’t get home until about 5:30pm. My whole day did not go as planned and throughout I had this persistent cough. I felt wore out and dragged through the mud. Exhausted.
After a quick and unhealthy meal (ugh), Harloh got a bath and I continued to work on the spreadsheet.
We hung out, did some ABC Mouse and story time. Fed the fishies.
Francis put in Boyhood and it was so good. During the movie I was still able to work on the spreadsheets…
The movie ran longer than expected (guess we should have looked at the minutes) and didn’t fall asleep until sometime after midnight…. There was just no blog posting yesterday.
Ugh. Not to sound like a party-pooper, but if you made it this far in my long-winded post – I’m now feeling worse than yesterday. This cough is now producing phlegm that seems to be clear and my throat is on fire.
My voice is cracking…
And, I have a lot to do the next few days in the world of doctor appointments and errands.
Yay, Immunosuppresants!
Happy Monday!
It has taken a while, but I’ve finally made it to where sitting at a computer isn’t completely intolerable.
The hospital stay was from Sunday to Tuesday night, but let’s face it, any time spent locked down is too long. Dreadfully long. Then, you have your ‘psuedo-recovery’ as I call it: the timeframe from when you left until you feel more normal. Where you mope around completely lacking in energy and feeling weaker than when released, until you sleep yourself to a coherent consciousness. When you no longer feel dizzy from getting up and can finally consume the right amount of water to keep hydrated.
No matter the length of stay, being away from home really does put your life on PAUSE. Whatever you did up to the point of being admitted, is still where you left it. No progression. No regression. Just there. Life all around continued to move while you were stuck in some sort of patient purgatory and your lists made to keep organized have not changed. All that you wanted to complete is still in limbo. Nothing moved. Nothing got better or worse.
Life is just there.
Every time a flare sneaks its head in, your diet gets another overhaul. Especially after a hospital stay. RESTART.
Yes. I’m sure staying another day or two confined to a sweaty bed would have me eating solids a lot sooner, but who REALLY wants to do that?
Not me.
My gastroenterologist wanted me to continue a full liquid diet for a couple of more days to allow extra healing time for my colon. There was just no way I could continue eating what was there.
Sweets and sugars. Blech.
So, I made some quick pumpkin soup Wednesday night (that was a world of fun!) to break up the monotony of dairy and broths. It came out surprisingly tasty, I must say.
Then, I had it for lunch yesterday…
Now, I’m progressing into the world of purees and mashed foods. It is painfully slow, however, I have to remind myself that painfully slow is better than severe pain. While my family is eating solids, I will just ease into my mashed sweet potatoes/carrots tonight, happy it isn’t broth.
Happy it isn’t worse.
Because, it can always be worse.
Now, about that meditation challenge…
I haven’t been able to post an update due to this sweet bed that was reserved for me at the hospital, and can’t really get into too much detail right now either, just yet.
A couple of days were not well spent on the couch in pain and discomfort, constantly popping some pill to fight some symptom. The cramps got real bad and a fever would periodically emerge and then slowly go back to normal. It almost became a pattern.
Early afternoon on the 11th, after seeing my gastroenterologist luckily on my second layover in the emergency room, it was explained to me that I was going to be admitted.
Looks like this is going to be longer than hoped. I miss my little family so much and seeing them for an hour or so isn’t enough.
inflamed in the membranes 