Lyme Diagnosis -- The pieces are finally coming together!

Lyme Diagnosis

When I received the call a few weeks ago with the positive results for Lyme disease I was giddy for the first 15 minutes.  I have been "sick" for so long and it was finally a "real" answer   Growing up I was sick A LOT!  It got to the point where at times we'd just call the doctor and ask for an antibiotic.  I don't remember a time I had a lot of energy; tiring out way before my siblings or friends.  Below are some of the diagnosis I got over the years.  A lot of people will say they were misdiagnosed for years.  Yes I do have these health issues, but it all points back to Lyme.  It’s so frustrating because I look fine.  When I say I’m tired, many of the below symptoms are going on.  It’s not just needing a nap; it’s severe.  It is estimated I've had Lyme for at least 25 years.

Symptoms/Diagnosis

multiple throat infections as a child per year.

fatigue a lot from childhood through adulthood.

severe knee pain from about age 12 till adulthood until i changed my diet.

constant low grade infection in tonsils which ended up being taken out.

Diagnosis - chronic fatigue syndrome

Diagnosis via saliva test - adrenal fatigue

Diagnosis - hypothyroid

Diagnosis - hot nodule (thyroid)

Diagnosis - pcos - this was found out when I lost my first child.  I have had 4 losses in total before 10 weeks.

Diagnosis - depression

Diagnosis - anxiety

Diagnosis - epstein-barr virus

Diagnosis - osteopenia

Diagnosis - food allergies

Diagnosis - environmental allergies (diagnosed at age 5)

Diagnosis - perimenopause (age 30)
Diagnosis - fatty liver disease
Diagnosis - high cholesterol

Experiences

Multiple er and urgent care visits with chest pain, and heart palpitations.

In 2010 I had a 3 years stint where I was in bed most of the time unable to do a lot of the normal household chores or cooking having to pay my daughter (or someone else if she didn't want to) to  help me out.

Crashes - I get incredibly cold or hot, cannot hardly move off the couch/bed, dizzy, not able to read and comprehend what i hear.  My anxiety goes through the roof for no reason.  With time and lots of rest I can get back to my "normal".  Sometimes that's in a day, sometimes it's months.

2018 was the first time my legs felt heavy.  I went to go grocery shopping and walking down the stairs of my front porch i almost fell down.  It suddenly felt like I had cement blocks on my feet.  This has happened several times.  

Foggy brain has been awful on and off.  Not being able to put sentences together or comprehend what I'm reading when i’m at my worst.  This has been going on for at least 9 years.  

Random dizziness - I've found when i’ve done too much (like being out of bed if i’ve been tired) can bring this on more, or being overwhelmed with electronics or physical exertion.

2017 was the start of random muscle pain.  Not from working out as i haven’t been able to for a year, but it felt like that same pain.  You know, no pain, no gain?  But I wasn’t working out.  It could be my upper arm one day, my leg another day, and a finger the next day.  Apparently pain that moves around is very indicative of Lyme.

2017 is also the first time i had tingling in my fingers and toes.  It’s progressed.  Some days i’ll have it slightly, other days it’s much more pronounced, and yet other days it’s not there.

Tingling/fuzzy feeling in my brain.  I know, weird description but there it is.  It’s a very odd sensation.

Nerve pain - this started in 2017 as well.  It felt like electrical shocks going through one leg or another.  

Night sweats on and off for years along with very early hot flashes.

There are years I had horrible insomnia.  I'd finally get to the point where I was tired, then every time I'd just fall asleep my heart would skip a beat, thump hard and keep me from sleeping.

At times air hunger.  It feels like you’re not getting enough air and you just have to take some very deep breaths.

Emotional stress easily leads many of the above symptoms.  

Making dinner in the evenings is sometimes hard because I’m already tired most evenings by 4pm.  There were times I’d make dinner and feel like I was close to passing out.  I’d sit down to dinner with the family to eat and I was so dizzy I had to lie down.

Extreme fatigue on and off.  The days I don’t have severe fatigue, I'm still limited on how much I can do, what activities I can do, etc..  I rest up if I know I’ll be going somewhere on a weekend.  Then I pray like crazy my body won’t decide to revolt anyway after I’ve rested.  I just recently read about The Spoon Theory.  It's so helpful in explaining this to the kids.

Currently:

Over the years with the hormone disruptions and adrenal fatigue I paced myself more, cleaned up my diet even more, learned methods of stress reduction, how to get better sleep, etc... All of these things have definitely helped but the symptoms still remain and are starting to get worse again.  My treatment for Lyme disease will start in September.  I'm cautiously optimistic that after this I may for the first time lead a more "normal" life.  I would really appreciate your prayers during this time.  I'm so thankful to finally have answers.

So if you see me posting a lot on facebook or I'm binge watching tv...there's a reason...it's called a chronic illness - an auto-immune disease.

Heart Health Awareness

This is my second year having my cholesterol checked.   The only reason I have an annual physical now is because my husband's insurance requires it in order to get our hsa deposit.  And boy am I thankful for it!  It has been found out because of genetics, I have terrible cholesterol.  In fact, the worst ration my certified nurse practitioner has ever seen (and she's been practicing a LONG time!).  Anyone who personally knows me along with myself was totally shocked.  My diet isn't perfect, but it's incredibly good!  I was told the reason is because I hit all the hereditary markers.  I was told last year to add in more vegetables and fish/fish oil.  This year we rechecked and while a couple numbers were down a bit, the worst was up - my ldl-p.  Those are the small, sticky particles that stick to your arterial wall causing build up.  Furthermore, the good cholesterol (HDL) was the lowest they have ever seen.  In fact it was so low they rechecked.  This year it was up 2 points, but only at a 12.  Most people my age have 50 and over.   In fact, on some charts they won't even register anything under a 20.    So, I've hit all the hereditary markers, I have PCOS which may contribute, severe ongoing stress (which contributes because of hormones) and hormonal imbalance which contributes.  My estimated risk of having a heart attack in the next 9 years (maybe sooner because I wasn't tested before now) is incredibly high.

So, my doctors battle plan at this point is to put me on a statin (water soluble) and have my levels rechecked in 3 months.  I plan to also add in a lot more fiber and am changing up my exercise plan to incorporate high intensity (for me) intervals.  This is supposed to make the heart work harder which in turn could potentially up my HDL.  Studies have now found the only way to up HDL is through exercise.  While I've had a pretty regular exercise routine, because of other health issues I cannot push myself.  I've already found with this new exercise routine I'm feeling too tired and foggy brained.  But it's either that and hopefully see an up in HDL or risk a sooner heart attack...

So here's why for me this is so challenging.  I mentioned the above challenges with my health and exercise.  What's challenging with food is I struggle with candida (have to be careful with many foods) and I also have many food allergies.  So when someone shows a meal plan showing how to have high fiber meals it's either too full of natural sugars from fruits (which contributes to candida) , or wheat (which i'm allergic to), or too many carbs which is bad for my pos and overall personal health.  I've learned over the past 14 years how to cut out refined sugars and foods, how to work around food allergens, I've done an intense candida diet and a short time of a G.A.P.S. diet.  But this is going to be the most challenging - adding in more fiber without too many carbs and sugars.

I'm asking for prayers as I continue to try to make changes that will Lord willing help impact my heart health for the better.   I struggle with depression and anxiety already and since finding out this news it's been a struggle of my mind. My energy has been at an all time low because of that and other issues.  Please pray for renewed physical and spiritual strength as I now embark on yet another journey in health.

I was already planning on compiling a new cookbook this years with healthy recipes.  Now, it will be even better because of all the new recipes I plan on trying out.  My hope is and has been since I was young to help others.  I hope my struggles along the way can help even one person.

"Never worry about numbers.  Help one person at a time and always start with the person nearest you."
Mother Teresa

Mother Teresa has inspired me for many years and continues to do so.  I have big plans in the future where I feel like God is leading.  Please be in prayer about that also.  I want to do HIS work.

A Loss is a Loss, No Matter How Small

Within the first year of marriage, my husband and I conceived our first child.  We were so incredibly excited!  I already had a 4 year old daughter; this was our first child together.  I had no trouble conceiving and keeping my daughter and didn't in my wildest dreams think I'd be one of "those" people who lost babies.  I remember at about week 8 into my first pregnancy with Matt,  feeling all my pregnancy symptoms go away.  Then the thing a pregnant woman fears most; the sight of blood.   It was just spotting at first, but as time went on, it got heavier.  I called and talked to midwives and other mom's who had been there before me.  I went to the Emergency Room but there was nothing they could do.  I knew deep down in my heart this baby wasn't meant for this earth.  I remember the day my miscarriage was complete.  I felt a lot of pressure, went and sat on the toilet and delivered my baby.  I remember hearing screams and wailing; then realizing it was the sound of my own voice grieving the loss of a child I would never know.  The child I was so excited for, I dreamed of and planned for.   Throughout out marriage I was able to conceive a total of 7 children, and lost 4.  Without my personal relationship with Jesus and His comfort during this time, I don't think I would have made it through.

Why am I writing this now?  Because over the last several years I've seeing a huge difference in the way people treat mothers of children who are lost in the later stages of pregnancy vs women like me who lose them early.  I realize it's a different loss; but loss is loss just the same, no matter how small.  Women who lose babies early like I did don't get meals delivered, they don't have someone keeping in touch with them making sure they are ok. There is no funeral for our babies; they get flushed down the toilet. Let's just stop here for a moment.  Flushed down the toilet.  This is so heart wrenching!   That alone made me almost lose my sanity.  No one takes care of mama during this time, she's left to fend for herself taking care of the rest of her household whilst still bleeding and recovering like you would after a full term delivery.  Her milk still comes in and she's left to grieve the baby she will never feed.  She's left wondering what she did wrong; could it be something that could have been prevented?  Why is this happening to me?  There are no cards coming in the mail for support, no flowers to offer some kind of beauty amidst the dark days ahead.  Just the woman alone with her thoughts; dark as they might be.  To most people around us, it's like our babies never existed in the first place.

Please, if you know someone who has lost a baby at any stage, realize they are grieving too.  I had statements from those I was close to such as, "you can always try again", or "be happy for the children you have", "at least you weren't far along", and one of the worst, "well, i'm sure it's part of God's plan."   Please, offer them support, offer to take care of any children they may already have, set up a meal train, send cards of encouragement (or texts).  We grieve too.  We feel loss just like anyone else.  Please don't forget us.

Thanksgiving Master List For 20 People

I wanted to post this so I don't have to do the leg work year after year.  lol!  Hopefully this helps someone else out too.   Please note I do not have pies, or rolls listed.  That's because they will be brought by a family member.  Adjust accordingly.

Don't be too shy to ask guests to bring something to contribute to the meal.  Keep in mind that out of town guests should bring things that don't need refrigeration.  Items could include pies, rolls, drinks, paper products (plates, cups, napkins), canned or bottled beverages, etc...

I like having a master list ready so I can slowly start buying non-perishable items starting a month before so the financial hit doesn't seem as bad.  That way I can also pick things up as they go on sale. Make sure to keep your list with you when you go shopping.  I have not added a shopping list here because I've already purchased several items.  Maybe I can update that later ;)  I also like to use as many paper products as possible so the clean-up is much easier and I get to enjoy more time with my family vs in the kitchen.  One must have for me are Chinet White Platters.  They come in a 24 pack, are super heavy duty and large!  This is perfect for the one huge meal out of the year - Thanksgiving! I do use real silverware.  Sams Club is a great place to get replacements as ours seem to disappear on a regular basis.  Must be those fairies!

Enjoy!

Set Up:

Coffee/tea station with everything needed (powdered cream, sugar, kcups, teas, hot cocoas disposable coffee cups.)

Appetizers on the main table along with cold beverages.

Main food on counter by sink.  

Pies/desserts on counter in front of sink.

Noon Appetizer/Snacks:

Cheese cubes, salami - platter

Crackers, pretzels - platter/bowls

Chex mix - small bowls

Veggie and dip tray - tray

Candycorn in candy dishes

Deviled eggs

3:00pm main meal:

Roasted and smoked turkeys 18-20lbs each (we like to have leftovers)

Mashed potatoes (18 cups)

Gravy (2 quarts)

Sweet potato casserole - make 2 1/2 recipes

Mini bundt stuffing - Matt makes the stuffing.

Green bean casserole (3 recipes)

Cream cheese corn

Rolls and jam

Cranberry sauce

Pumpkin pie 3-4 pies

Spice cupcakes - 24 cupcakes (that's one cake mix)

Pepsi, Canada Dry, Lipton or Arizona Tea, and bottled water.

Pan sizes:

9x13 = 15 cups

9x5 loaf = 8 cups

9x9x2 = 8 cups

9’ round = 6 cups

Thanksgiving Timetable:

5 days before:

Purchase turkeys

Day before:

Double check toilet paper, paper products, trash bags and food items.  If you're missing something, go and get it;) 

Cut all possible veggies for appetizers, and stuffing. Cut cheese into cubes and salami.  Platter the cheese and salami.

Cook sweet potatoes in the crockpot, mash and refrigerate.

Set up drink station

Place cranberry sauce in serving dish, cover and put in fridge.

Make cupcakes 

Set out all dishes and serving utensils for the next day.

Pick up ice.

Sit out all canned food, and spices on the counter.

Make seasoned butter for turkey. *See turkey tips below.

Day of:

9:00am - cut bread cubes and toast.  Set aside till later. place cold drinks outside.  Mix up frosting (canned frosting, powdered sugar and cream cheese) and ice cupcakes.

9:45am set turkey out to come to room temp if 20 pounds

10:15 - start prepping turkey

10:30 - place turkey in oven.

11:30 - set out appetizers, and plates/napkins, get cold drinks from outside.

2:00pm - take turkey out and set aside drippings.  to cover or not to cover?  that is the question.  Tenting with foil can cause soggy skin. Put stuffing in oven.

2:15pm - make gravy, start mashed potatoes  

2:30pm - start cream cheese corn, and put sweet potatoes, and green bean casserole in the oven. 

3:00pm - Get everything on the oven and carve the turkeys.

Now my friend is the time to eat your fantastic meal!

My Turkey Tips!!!!

The night before mix together thyme, rosemary, parsley, salt and pepper with about 3/4 cup room temperature butter.  Put in a freezer bag and refrigerate.

On the day of remove turkey out of it’s package.  Remove giblets and neck.  Rinse under cold water then use paper towels to dry inside and out.  Also take out seasoned butter and place on counter.

Place in roasting tray on rack and let sit at room temperature for 30 minutes and preheat oven to 475 degrees.  

After the 30 minutes is up, rub your fingers under the skin to loosen from the flesh.  Pipe in the butter mixer and move around till all the inside of the chicken is covered.

On the outside of the chicken brush olive oil  on the skin and salt.  

Place in oven and back at 475 degrees for 1/2 hour.  Then turn down oven to 350 degrees and roast till thermometer reads 155 degrees.  The turkey will continue to cook as it sets and should get up to 165 degrees.  Make sure to double check before serving. This usually equals to 1 hour sooner than the standard cooking time.

Some people say don’t tent with foil because the skin will no longer be crispy.

My Adult Tonsillectomy Story

Post Surgery as soon as I arrived home.

For anyone who really knows me, I have always been completely terrified of surgery.  So when I went to an ENT and he said I needed a tonsillectomy I was not very happy.  I found out in either January or February and I couldn't make my appointment till the end of June because that's when my husband could get off work to help out.  I wrote this so I could hopefully help someone going through the same thing.  Without further ado, here goes.

Week Before Surgery:
This is when I started purchasing everything I had seen online that might be helpful.  I also started setting up an area on the main floor where I could be inclined for sleeping and have everything at my finger tips.  At the bottom of this post I will have a list of items that I personally found helpful for my recovery.  I also have food allergies and tried to stay away from them as much as possible.  So my food options may seem different than many online.

Two Days Before Surgery:
I read online it would be a good idea to pre-fill any prescriptions needed for post operation.  So, I called the doctors office and asked them if I could do that.  They had me come in and pick up my prescription - Hycet (liquid Vicodin).  Little did I know it was almost impossible to get this anywhere without a 3-4 day wait.  Thankfully I remembered them saying most people get their prescription filled at the hospital.  So, I went to the hospital's pharmacy and got it filled there.

Day of Surgery:
I was and still am completely in awe of how God kept me calm not only the day of surgery but the weeks and months that led up to it.  I have truly experience "the peace that passes all understanding". My husband and daughter took me to the surgery center where my procedure would be done.  The wait was fairly short. They put in an iv port (tried once to no avail so they had to move up my arm) and not too longer after that administered some anti-anxiety meds - standard procedure.  I was shocked at how quickly they kicked in.  My friend Angela  was so right.  After they put that in I didn't care what was going on around me.  I vaguely remember getting wheeled into the operating room at that point and then a nurse adding something to my iv and I got incredibly tired.  Before I knew it I was in the recovery room with a nurse asking if I wanted my family in the room yet.  I told her no because I was having a hard time waking up.  Not too long after my husband and daughter came in.  I was in no pain what-so-ever, just very tired.  We arrived home and I immediately went to my recovery area, laid down and before too long was out like a light.  I slept several hours.  When I awoke, I took my meds.    At this point my writing is very to the point, not at all story like.  This is what I journaled during the actual recovery process.

Day 1:

Hard time waking up after I arrived home from the surgery center.  

Ate - scrambled eggs twice, mushy quinoa noodles with butter and coconut milk ice cream. 

Burning from liquid Vicodin.  Chase quickly with ice water.

Drank iced water, apple juice and bodyarmour almost every hour.

Tired a lot.

Uvula is huge and sides of tongue are numb.

Cried like a baby at one point for no reason.  I'm guessing it was my body ridding itself of anesthesia.  My body takes a long time to get thugs out of my system.

Humidifier on at night.

Day 2:

Throat started feeling scratchy so I'm doing 10ml every 5 hours instead of every 6.  Directions said 10-15ml every 4-6 hours.  I'm starting slow and going up as needed.  No pain really.  Uvula is still absolutely massive.  

Breakfast was scrambled eggs and oat bran with honey and butter.  The oat bran got stuck on the scabs, bad idea.  I had a few bits of burger and some mushy quinoa noodles with butter for lunch.  Later I made an icy with frozen Bodyarmour Popsicles microwaved for 30 seconds and blended it withaloe Vera juice.  Later I had some some coconut milk ice cream.  So far that tastes and feels the best on my throat.  Dinner was a homemade puréed potato soup cooled to room temp.  So good!

Very tired because I didn't sleep much last night from waking every hour to drink iced drinks.  I also iced my neck last night and this afternoon.

I feel like I'm sailing through it but I'm just waiting for these scabs to slough off and be in agony...

I walked around a few times today and hubby took me for a ride to Starbucks and I got an ice water.  He thought id need to get out for a bit.

Day 3:

Ear pressure today.  Not bad just noticeable.

Fatigue is off the charts.

I have had the same foods with the addition of a cheese sandwich, microwaved, then cooled.  I also have added a banana, raw honey, avocado, protein powder and ice water smoothie.  

The throat pain is slowly but steadily increasing.  I'm still keeping my meds at 10ml every 5 hours.  I notice as the scabs grow more and more, my ears hurt more.  Not awful, just noticeable.  

I took a shower today and it felt good but wore me out quick.  

Brushing my teeth and tongue 2-3 times per day.

Finally realized apple juice gave me awful gas.

My son got home from camp today and is determined to not leave my side in the evenings.  

Day 4:

I slept in 4 hour increments last night which was nice.  

Ears hurt more this morning as does my throat but it's not unbearable.  

Again, crazy fatigue!  I find after I take Hycet I'm terribly tired until I get about 45 minutes from taking my next dose.  Then I'm awake for a bit as well as coherent.  Tv watching the last few days along with reading has been few and far between because I just fall asleep.

Still pushing fluids, but not as much as before.  I'm trying to up it today.

Tried white grape juice today and it burned.

I added French toast and tuna with just mayo on white.

Pain meds run out an hour before

Day 5:

Woke up just before 4:00am in pain that brought me to tears, some scabs fell off.  Also, awful nausea From my period - worse period day.  Went upstairs crying to Matt.  If this is what's to come the next 5-8 days I might lose it.

Meds wear out 1 1/2 hours before my next 5 hour stretch but I don't want to up them.  

I added a bit of very moist chicken and well mashed sweet potatoes to my food list.

My ears are hurting consecutively worse daily and today headaches started as well.

When the meds kick in it helps a lot but doesn't take away all the pain anymore.

Day 6:

Accidentally slept through taking my meds this morning by 1 1/2 hours and felt pretty bad when I woke up.  It's 11:53 and still not great.

The rice sock helps a lot for ear pain.  Ear pain is not good.  I look pretty funny when I use the sock for ears and ice packs on my throat at the same time.

Still resting a lot and shocking haven't gotten through the Gilmore Girls yet.  Caution, crying makes my throat feel awful!  Thanks Lorelei and Luke.

I've cried several times today from pain and emotions.  Only I should be half way through by now.

Day 7:

Last night I couldn't breathe because of phlegm build up and stuff stuck in my throat.  Bad idea eating cheese and eating two bites of soft serve ice cream.

Tried to eat oatmeal...too painful.

I've had a few scrambled eggs and am now eating coconut milk ice cream at 12:30.

Pushing more water again.

Little bit of blood tinged mucous today.  Matt was so kind knowing I can be paranoid.  He talked me down from a freak out.  

Worse head/ear pain.  Eating 1/2 hour after meds helps.

Day 8:

Woke up at 2:45am, 15 minutes away from taking my next 5 hour stretch of Hycet to be met with so much pain I almost passed out.  It was after I had spit out what was in my throat.  Whether it was phlegm build up for scab I don't know.  I downed the Hycet as fast as I could chased by some ice water and stood there shaking/jaw trembling for minutes till the pain meds kicked in.  Sick to my stomach and still in shock at the amount of pain now 45 minutes later while holding an ice pack to my throat.  I really hope this eases up by day 10-12.  Now, to make sure to adequately hydrate.  

Today I went back to a more soft and liquid diet.  Pain is def from scabs falling off.  It's a burning kind of pain and even cold water hurts.  A huge scab came off this afternoon and this evening I noticed a tiny blood clot and a bit of bleeding where it was.  I called the doctor and he said as long as it quits bleeding after applying ice water it should be okay.  Much more rest, no drama and more hydrating tomorrow.  My brother was mean which led to me sobbing hard for 15 minutes, kids were difficult and I did some light housework today.  I need to avoid all that tomorrow.

Day 9:

The pain is to the point where while I'm still doing 10ml of Hycet, I've now bumped it between 4&5 hours depending on how I feel.  The pain for me now can be described as burning.  Anywhere the scab has come off burns when the pain meds wear off or when anything touches it.  I find myself holding my saliva in and swallowing less.  It's takes a conscious effort to swallow.

I wasn't able to eat anything till about 7pm.  Everything else was a liquid or soup with protein powder.   I haven't really talked much today from pain and not wanting to encourage another blood clot. I tried to drink 12 ounces of water every 1 1/2 hours.  I fell short 12 ounces overall.

I need to make sure to open the blinds tomorrow because it feels like days a blurring together since I'm not getting outside or opening curtains.  Very bad for my emotional health.

I have my appointment Wednesday - 5 days from now.  Lord willing I'll be able to eat more normally by then.

Day 10: 

Not much different from day 9. 

Had a bit of blood in mucus again several times today but I've been keeping up with cold pureed lentil soup, ice water and coconut milk ice cream.  Oh, for breakfast I had a pancake and scrambled eggs.

I got up for 15 minutes to help the kids and was dizzy, nauseous and exhausted.  I think building up my energy may take awhile.  

I'm finding my tongue is constantly tingly and has been since surgery.  I also have headaches now which I didn't before.  I also feel like and saw something that to me looked like a mini tonsil on my left side in my mouth just under my tongue.  It's weird but I figure the doctor I go and see Wednesday will tell me what it is.  

This evening I got to 6 hours and no major pain, just a bit.  I'm going with the low dosage of 10ml I've stayed with and setting my alarm for 6 hours and see how that goes.  If I'm not in any pain at all I'll wait longer between.  

Still spitting out lots of mucous.  It's actually good to have a foam cup to spit saliva into.  Nasty, but I go through a lot less Kleenex this way.

Day 11 and 12:

I've turned the corner, although I do have bloody saliva on and off.  Just a bit here and there from different spots.  When that happens I immediately drink ice water and hold it in the area that's bleeding.  So far the bleeding has always stopped.

My uvula swelling is finally starting to ease up some and the tingling in my tongue while still there isn't as severe.

I'm still very fatigued but am able to do small tasks a few times per day.

I have my voice back but am using it sparingly.  I find when I talk to much I'm in pain.

Days 13 and 14:

I slowly have more and more energy.  On day 13 I was able to prepare very simple meals for my children for breakfast and lunch as well as make a simple blueberry crumble bar for my husband.  We missed celebrating our anniversary because of my recovery and I wanted to do something special for him.  I didn't care much before about not getting out of the house but now that I'm taking less Hycet and I'm more aware as well as feeling better (slowly) I'm itching to go do some grocery shopping to get out of the house.  I realized yesterday that I'm getting some feeling back in my tongue but the edges are still tingly.   I don't have much taste at all.  My diet is still very bland and easy.  For breakfast today I had steel cut oatmeal with some whey protein powder added, chopped banana and a bit of maple syrup.  I still have this place on the left side of my throat that feels swollen on and off almost like a mini tonsil - that's what it feels like at least.  I'm curious to see what the ENT says today.  I'm still trying to drink plenty of water and liquids.  I haven't strayed from white grape juice, water or BodyArmour drinks.  For me, I've wanted cold food and liquids the entire time.  In total I believe I lost 8 pounds.  I still ice my neck on and off if I've talked to much, or I feel swelling.  I had my follow up appointment today and the doctor said I'm healing well but I still need to be down and rest a lot for at least another week and eat soft foods until I don't see anymore white (scabs) in the back of my throat.  It could be 1-2 more weeks.  I'll be honest, once I got home and let that sink in I started getting depressed.  The possibility of one full month taken away from my summer and from my kids because I can't do anything is pretty much a bummer.  But in all reality, my energy levels are so low anyway that I know I need to rest.  I also started having a metallic taste in my mouth the last several days.  Very gross!  I pray it goes away eventually.  I'm very, very slowly getting some taste back.  The other thing I've found is that I think I may even have a more sensitive nose after this which is crazy because it was already sensitive before.  I stopped taking my pain meds on day 14 and am using tylenol instead.  The pain is pretty much not noticeable.

• Get help!  The first two weeks you will probably be on pain meds.  Even after you no longer need them, you will find you are incredibly weak.  Plan on the pain lasting about two weeks and building yourself back up at least another week.  See if people can bring you evening meals for two weeks, have someone else clean, do your laundry, run errands, etc... and do as little as possible.  You want to heal as quickly as possible without hemorrhaging.

• Have a long tv series to watch.  I started Gilmore Girls and it lasted pretty much my whole recovery time.  I found I couldn't read much while on pain meds so watching something light hearted was perfect.

• Have lots of kleenex or something to spit in.  There will be a lot of mucous.  Very gently get it out.

• Drink every hour the first couple days.  After that I drank every hour during the daytime and every few hours at night so I could get much needed sleep.  Having iced beverages helps the pain tremendously.  

• Eat!!!  Whether that is smoothie form or real food, your body needs very nutritious food to be on the mend.  

• Eat 1/2 hour after taking pain meds.  That's when you'll feel your best.

• Make sure to set a timer to take your pain meds on time.  

• Try to keep up with hygiene.  Shower and brush teeth daily if possible.  The teeth I tried to do at least 3 times per day.  There's a lot collecting back in your throat so staying clean helps.  Just be very careful when brushing your teeth and do not gargle. Just gently let the water move around while tilting your head and let it fall out of your mouth.  This is to prevent scabs from coming off earlier than they should and causing excessive bleeding.

• Your uvula may be very swollen for 2 weeks.  Mine was huge and didn't start getting smaller till the end of the two weeks.  It's still swollen but not act bad.  Sleep inclined.  My life saver was my recliner.  I just had it go down a bit so I was still very propped up.  I tried to lie down once and I couldn't breathe out.  That's kind of nerve wracking.

• Ear pain for some set in right away but for me it was days later and it was probably just as bad as the throat pain if not worse.  Thankfully pain meds helped me a lot with that.  There were a couple days I iced them.

• If you think you'll run out of pain meds over a weekend, call your doctor and ask for more.  You don't want to be stuck running out of pain meds and not able to get them because it's a weekend.

• Have a mirror and flashlight on hand for those times you think you may taste blood.  It's good to see if it's blood or mucus and see where it's coming from.  You can also see how your throat is progressing. You can find pictures of throats post tonsillectomy and what it's supposed to look like - it's not pretty.

• Keep a positive attitude and realize while it may stink now, it doesn't last forever.  

• Don't over do it physically.  For the first week or more I was strictly in bed and going to the bathroom to urinate or shower.  When you do start feeling better start out really slow.  Walk around for a bit, sit up outside for fresh air, etc.. When you feel fatigued, go lie back down.  

• Use a sharpie marker to label bottles of water for the times they should be drank.  That way it's easier to make sure to keep hydrated.

• Inflatable Travel Pillow - this helps hold on two ice packs at once which is very helpful.

• Cool Air Humidifier -  to help keep your scabs moist while sleeping.

• Hand Bell - this helps notify others that you need help when you're not able to speak.

• Ice Packs - to help with pain and swelling.

• Foam Cups - they don't sweat and they keep ice colder much longer.

• Large Stuffed Animal - not only does it help to have something to hug while you're in pain, it helps keep your head propped up to sleep.

• Hard Plastic Basket - to keep your meds, flashlight, remotes, pens, etc.. in.  This material is best because with it being by the humidifier, it won't get moldy.

• Aloe Vera Juice - this will help with the pain and healing.

• Lots of bottled water and a sharpie to label what times you need to start another bottle.  8 ounces every hour is what you want to shoot for.  Make sure to have it iced.  It helps a lot with pain when you stay hydrated.

• Chicken Broth - This can be used in place of milk when making mashed potatoes, used as a base for soups that you can puree, etc... It adds nutrients to the small amount of food you'll be eating.

• Frozen Bananas - I used these in smoothies, as "ice cream' and more.  Peel bananas and break in half, then put into a freezer bag and freeze.

• Hydration Drinks - I purchased BodyArmour because I'm not allergic to the ingredients in it.  In addition to drinking it, I also made several into popsicles.  I'd take 2 popsicles out, microwave them for 30 seconds.  I'd then put them in a blender with some aloe juice and make a homemade slushy.

• Eggs have been a staple.  I've had them scrambled and hard boiled made into an egg salad with only Just Mayo.  It's so important to get good sources of protein while recovering.

• Applesauce - I found at first it was easier to eat the baby food applesauce then graduate up to regular.

• Whey Protein Powder - This can be added to soups, oatmeal, smoothies, etc...to give it that protein you will need.

• Avocado - I used these in smoothies.  It's important to have good fat while recovering as well.

• Sonic Ice (or other pebble ice) - I can't stress this enough.  This ice was the best for recovery because it's easy to chew.  I went through several bags.

• Sweet Potatoes - I made mine in the crockpot with a bit of water then skinned and refrigerated them.  They are great to eat plain, make into a soup or make into 2-Ingredient Sweet Potato Pancakes.  They are highly nutritious.

• Quinoa and Rice Noodles from Trader Joes - It takes a bit longer to make these super mushy but my husband got it down to a science.  Add a bit of butter.

• So Delicious Coconut Milk Vanilla Bean Ice Cream - Dairy is a huge no-no.  It causes even more mucous build up and that in turn caused me to not be able to breathe well at one point when I had just two bites of soft serve ice cream.  

Day 16:
I have awful chills, cold sweats last night, nausea (I think I might vomit), low grade fever,  headache, diarrhea...I just feel awful.  I called my ENT to see if it was from the meds and he said pain meds can cause "stomach distress" but I probably had a virus.  I called the pharmacy to see what they thought and they said it absolutely could be from stopping my pain meds cold turkey.  She suggested I take 5ml of my pain medication and if I feel better, that's what was causing the symptoms.  Sure enough the pharmacist was right.  After looking online, this is the schedule I'm using to wean myself off of my pain meds from where they were before.  Here's to hoping my body adjusts ok.


Hycet Withdrawal Tapering Guide.
Days 17 and 18:
Take 5ml every 7 hours.

Day 19 and 20:
Take 5ml every 9 hours.

Day 21 and 22:
Take 2.5 ml every 9 hours

Day 23 and 24:
take 2.5 ml every 11 hours.

Day 25 and 26:
Take once per day.


Day 22:
I woke up at 1:00am this morning with awful diarrhea.  It's happened 5 times in the last 8 hours.   I'm not sure if it's food poisoning from eating out yesterday, from the ice cream I had last night since I haven't had dairy since the surgery, or if it's from weaning off the pain meds.  Either way it stinks - no pun intended.  lol.  Other than this, the weaning has been going pretty well.  I only had a slight headache and sweats one other night.  I'm so thankful. Here's to hoping the rest is cake from here.  As far as my throat, it still feels full and if I talk a lot my throat swells and my jaw hurts.  My family says my voice is sounding more normal, just like I have a full throat.  There is still a little bit of white scab on my throat but it's almost gone.  I'm still eating soft foods for the most part and drinking as much cold water as I can. I think it helps with the swelling.  I have yet to have a hot cup of tea, hot food or exercise.  However I have gotten out with all 4 kids doing some grocery shopping and taking 3 of them to the park.  My energy up until the diarrhea early this morning has been coming back slowly but steadily.  Oh, I almost forgot to mention, my uvula is almost back to it's normal size.  I still have a very slight tingling in my tongue that I don't notice unless I think of it.  The metallic taste is gone and almost all my taste is back.  I also don't have to spit phlegm in a cup more than 3 or 4 times per day.  Before I had to several times an hour.

Day 32:
I'm still having swelling issues making it hard to swallow and difficult to say certain words.  The sore throat is on and off.  I am off my pain meds which makes me so happy!  I'm still trying to build up energy.  Sure enough my doctor cut off the soft palette on my left side.  That is something I plan on talking to him about when I go in Tuesday to figure out why I still have swelling and a hard time breathing on and off.

Day 34:
I went to another ENT appointment today because I still have lots of swelling and pain on and off. He said the surgical area looks good and will continue to tighten over time (still a few more months). He used a fun little scope to go through my nose and look at my throat and said my "secondary tonsils" looked swollen. They are in the throat under the tongue. I am now on an antibiotic, and steroid which will be followed up by an antiungal. 


8 1/2 months Post Op:
Well, I'm 8 1/2 months out and my soft palate just started moving up more last month.  It's still not where it needs to be but I trust in time it will be.  It's taken so long but it's slowly working it's way back up.  I'm very, very glad I had this surgery!  

Here are some tips you may find helpful.

Here is the list of things I purchased that helped me.  You can also visit my Surviving  an Adult Tonsillectomy board on pinterest.

Post Tonsillectomy Recovery List:

Working Out and Christian Workout Music/Playlist

If you have read past posts, I had very bad health for several years.  That followed a bout of difficulties and depression as well as hormonal imbalances.  At this current time in my life, my body is doing okay :)  I started working out because I knew it was good for my hormones and depression.  Turns out I love it!  However, I still need to be careful not to overdo it and cause more hormonal problems.

Starting out I simply walked or rebounded.  Rebounding was great for my joints since I was diagnosed with osteopenia several years ago.  I would do 5 minutes of walking or rebounding before I knew it was time to stop.

Moving forward I realized weight bearing exercises would be good for my osteopenia.  Taking it very slowly I got a weight bench and put it in my basement.  However, that was short lived because it's difficult trying to workout with a crawling baby in a basement full of things that could potentially hurt him.  I was constantly stopping my routine to help him.

Next, I decided to purchase dumbbells and a rack (off of craigslist).  I can have it on the main floor where I can watch the baby and things are baby proofed.  Now my trampoline and weight rack with several sized dumbbells are ready for me to do my 4 day a week routine.  I was also able to purchase a gently used punching bag.  That will come in hand for the winter depression issues - something new and fun along with being good for my health.

Why am I blogging now when I haven't for so long?  Well, first I wanted to get my Christian playlist up.  It seems no one has a good Christian music playlist up for working out on Pinterest, so I thought I'd add one.  Second, to give hope to those who have health issues who cannot work out a lot but can do a bit.  Below is where I started and where I am now.


Initial Workouts:
Walking or rebounding for 5 minutes.  This led to longer workout times.

2nd Phase:
5 barbell exercises in the basement with dancing as my warm up 5 minutes before.

3rd phase:
Warming up by dancing or on my trampoline.
Monday, and Thursday - Wall pushups, dumbbell shrug, barbell curl, tricep kickback and wrist curls.
Wed. - Friday - Reverse crunch, pelvic tilt, squats, leg lifts, calve raises and toe lifts.

4th phase (Just started and haven't figured out yet if it's too much. Time will tell.):
Warming up by dancing/jumping on trampoline and doing jumping jacks.
Monday - Thursday - Modified pushups, dumbbell shrugs, upright row, seated tricep dips, barbell curls, overhead shoulder press, tricep kick back and wrist curls.
Wednesday - Friday - Plank, dumbbell side bender, reverse crunch, pelvic tilt, squats, leg lifts, lateral leg lifts, calve raises, toe lifts.

I'm so thankful my body is keeping up.  I don't know how long this will last but I'm so thankful while it's here.  I also received results from my bone density scan and instead of my body getting worse like it has the past times, I have seen improvement!  I'm so super excited!

Below is a list of the songs I use on random play for my workout.
My True Love - Plumb
Everybody Get Up - Rapture Ruckus
Boomerang - Rapture Ruckus
Mr. Roboto - Rapture Ruckus
Anthem - Superchick
Let the Sparks Fly - Thousand Foot Crutch
Monster - Skillet
Tonight - TobyMac
Gold - Beckah Shae
#putyourloveglasseson - Beckah Shae
Funky Jesus Music - TobyMac
Momentum - TobyMac
Y.W.N.T.M.D. - Beacon Light
Overload - Beacon Light
Make Some Noise - Krystal Meyers
Rock the Party - P.O.D.
Get Up - Blanca

Healthy Food After Wisdom Tooth Extraction

I'm having my very first wisdom tooth extracted Wednesday.  I have a lot of food allergies (corn, soy, wheat, chocolate, lettuce and coffee) and I've been trying to figure out what I can have that will mostly (mostly) stick to my diet.  Most people I talk to eat jello, ice cream and broth.  I wanted a bit more than that so here goes :)

Jello is good one but did you know you can make it out of 100% fruit juice and gelatin?  That keeps it corn free of for me ;)  Martha Stewart has a good recipe that works very well.  Homemade Fruit Juice Gelatin.

Stonyfield Whole Milk French Vanilla Yogurt is def. on this girls list.  You can eat it by itself or make a very yummy smoothie with orange juice, frozen banana and this yogurt.  That way you're also getting a good source of vitamin c.  

Mashed Potatoes - enough said right ;)  If you aren't allergic to corn or wheat, make some homemade chicken gravy up ahead of time too.

Tribe Classic Hummus!  Since I'm allergic to soy there are a lot of brands of hummus I can't have.  Fortunately, I can have this one.

Unsweetened Applesauce cups.  Yep, this one is a given like jello isn't it?  Going unsweetened doesn't mean it's not sweet.  It just means there's no high fructose corn syrup in it.

Broth!  This is probably the most popular I've read about.  But instead of purchasing it at the store and getting barely any nutrients out of it, make it at home a day or two before.  It's super simple to make and very nourishing no matter what state your body is in.  Learn how to make this lovely broth here.

Naked Protein Mango Smoothie.  This is the one thing I'm cheating on when it comes to my allergy diet.  There is soy in this for the protein factor.  But, it's easy to pick up and have ready. There are lots of fruits in this as well.  Having 4 kids and a husband who works a lot, it's important for me to have a couple of these for my sanity ;)

Last but not least Peanut Butter Banana Smoothie.  I freeze very ripe bananas ahead of time.  Throw a frozen banana, some milk and peanut butter in the blender and you're good to go.  Alternatives are alternative milks or water, yogurt, vanilla, etc...  The basic recipe offers vitamins and protein.  You can find the simple version of this here.

So, here's to hoping my recovery is quick.  I don't like the thought of any kind of surgery minor or not.  But I am very thankful for all the posts and information online that helped me put this list together.  

I have some more information posted on my pinterest account under health.  Feel free to visit me there.  https://www.pinterest.com/mandikaake/

Wish me luck ;)