Long time no blog....

I am finally back here to update anyone who is still reading.

I never went back on the MAC drugs.  I got my vision back but have not gotten my hearing back.  It is a significant hearing loss.

I went to the hip doctor and found out I have 10 more years for my hips.  I did have to change pain med... to something stronger and longer lasting. I am also using a cane on bad days.  It really helps!!! We had snow last weekend and I require help walking in it.  Good non-slip shoes and a good strong arm.

No hernia fixing.  I was unable to do the CT scan due to hospital issues and blown out veins.

I did go through physical therapy and my tummy shrunk considerably.  The physical therapy did bad things to my hip but good things for the rest of my body.

Now that I have a cane I can start walking again.  I am hoping to get my lung function up by the time I see the doctor again.  We are having some insurance issues so we are not sure when that will be.

The only other icky thing is I am in perimenopause.  This means I get hot for no reason and my sleep is not the best (lovely insomnia).  Luckily, Kiddo gave him is old Ipad and when I can't sleep... I read.

Hope all of you had a wonderful Christmas.  We are enjoying Christmas break!!

Drug Holiday

I am officially on a drug holiday.  Sunday, I hit my breaking point with the migraines.  I had one regular migraine in the morning... treated it with Advil and then.... by late afternoon I had an ice pick migraine.  Enough to make a person go crazy.  I had bloated beyond feeling human.  My joints were no long working... almost frozen.

Fast forward almost  a week and no MAC drugs... I am a new person.  My headaches are so much better.  I had a dull headache on Friday and I had a large glass of water and it was gone in a short while.. no pain pills or dark room.  The swelling in my joints and limbs is almost gone. Hubby says I look like my old self again.

It just dawned on me.... my scalp doesn't itch as bad as it has for the past 6 months.  Those icky medications!!!

My joints are so much better.  I can get in and out of my chair without help.  I can climb stairs without having to grip the railing.  To that I say "SWEET!!"

We will see what the docs decide in another week....

January Health Update

I don't know how many family/ friends are still reading my blog.....

I am free of my PICC.  My arm went from looking like this:

To looking like this....

I have lots of nerve damage and my skin is still healing. 

To celebrate, we made a quick trip to Olive Garden on our way home from clinic.  I am sure I looked goofy in my mask but.... oh, well!!!  

I had my 3 month CT scan and the cavity is starting to heal but not fast enough.  Just wish it wasn't so big!!!  I have to be seen by an infection disease doctor.  I guess they have more drug choices  in their "doctor bag" than my CF docs.  

I have lots of energy but when I get tired.... I get zonked.  I am sleeping better with the PICC out.  

Doing vest treatments, my inhaled med  and the "magic three" drug cocktail.  We shall see what they add next.

I have absolutely no immune system.  Still doing at home isolation but have added going for small  walks and sitting in the sun. With the flu being so crazy I am happy to stay home.

I am free.... well almost!!!

Today I got the good news that I no longer have to take the Doripenem.  I am so happy.

I can go to sleep at a decent time at night and sleep in if my little heart desires.

I am only having to do the Amikacin 3x's per week now.  I have 4 days free... well... I still have to flush my line once a day.

I had a slight hiccup yesterday.  My line refused to flush smoothly.  The home health nurse had to run some enzyme through my PICC to eat away the sludge.  Now it runs super smooth.

I am exhausted from our busy day.  I am off to relax and then go to sleep early tonight.

Lots to be thankful for tonight!!!!!

P.S.

It looks like the Nocardia is gone.  Gone!  They are going to keep doing cultures but for now it is gone!!

One of those days....

It has been one of those days.... one of those weeks......

Enjoying Home

I am doing great at home.  I am flushing my own line and administering my own drugs.

I am not back to doing the cooking and the cleaning yet... trying to ease back into life.

When I got home I had packages to open.  I received this fun Lemon Bumblebee themed gift basket.

I also got a plant for the garden.  Hubby took it outside immediately and planted it in the backyard.  I am not suppose to plant/garden anymore due to my Nocardia or have houseplants.

I have more energy every day.  By the time my mom leaves I should be strong enough to be on my own.

Well....I am about half done with my morning IV medication.  Will flush the line and then rest. Kinda of rough getting up early in the am to do one of the meds. Can't quit yawning....

Heading Home

I am heading home to continue my IV drugs for the next few months.

I will keep you posted how it goes.

Nocardia

We found out last evening that I have nocardia.  I started yet another antibiotic to see if we can kick it.

So far so good.  Will update as we continue to fight this infection.

Evening #4

I am doing great!!

I am taking all the medications and doing lots of resting.  I am actually getting really bored.

I don't get to go home until my levels are just right and we find the right dosage.

I am been doing lots of walking.  Walking the halls, going down to the cafeteria and walking around my room.  My back gets tired when I sit in bed too long.

My heart rate has gone down and so has my blood pressure.  I am feeling very positive and in a great mood.

I am stilling hating my PICC.  The tape itches me.  I am looking forward to a dressing change next week.  Still waiting to get my eyes checked and my hearing checked.

I have wonderful nurses, CNA's and therapists.  Everyone is friendly and so very helpful.

Hugs to everyone!!

Momma is Hyper!!

I started my #3 MAC drug.  It is the first hard core one.  It is making me hyper.  It is not even a side effect.  I am also a touch dizzy.  I start the last hard core drug tomorrow.

My spit is starting to turn a dark yellow and other fluids are a lovely shade of orange.

I also had my PICC put in.  I could feel it being threaded into my chest.  It tried to go down the wrong vein and so they had to redirect it.  Freaky!!!

We went down to get supper.  I was punchy... I was so hyper.  I am feeling better this evening.  I am very chatty.

My family spent part of the day with me.  I had a most lovely time.

I am hoping that all will go well tomorrow and maybe I can go home by late Thursday or Friday.

Day 1 in Hospital

I am in the hospital.  I have started my first two drugs.  No side effects.  Nothing!!  SWEET!!!

Tonight I start drug #3.  I am very nervous about that drug.

I am suppose to "maybe" get my PICC today.  I have a plain jane IV for the past few hours.  It is giving me fits (arm is very sore).

The food is pretty good.  We will see how long this lasts.

Will try to update later today.

Mycobacteria Avium

I just got back from clinic.... yesterday.  My mycobacteria (MAC) has finally taken its toll.

I have a cavity (hole) in my right lung that is quite large.  It is time to treat the mycobacteria.  In a few weeks I will be admitted to have a PICC put in and start IV drugs.

Some of the drug side effects don't sound very fun.... having orange spit and tears does sound quite interesting.

Will be keeping everyone (friends and family) updated here rather than sending out emails.

It seems kinda weird to have a cavity (hole)  in my lung.

The mycobacteria is making my cough (all the time), low grade fever, horrible night sweats and mind blowing fatigue.  Hoping that the IV and oral drugs will kick the mycobacteria's butt and close the cavity in my lung.

Now it is time to get my house in order and start packing my bags

Out of Order

I have been "out of order" for over a week.  I had a tooth with a cavity that became infected and irritated.  I decided to have it extracted... rather than an expensive root canal.  I am still on a sightly soft diet.  

Can you see the black spot in the back of my mouth on the right side??  That is where they yanked my tooth.

(Oh, and on top of the tooth issues, I had a lovely sinus infection).... Yuck!

A week later my mouth is finally "un-swollen" and the hole is much smaller. 

I have finally gotten back to quilting and I have 4 projects that I am working on at once. Talk about crazy!!!

Since the pain is gone from my tooth, it is time to getting back to decluttering and minimalizing.  I have 4 LARGE boxes for charity ready for pickup.  Can't believe all that stuff was hiding in my house!!!

Will post pics of some of my current projects soon. Hopefully.  

I have to go back to the dentist and get 3-4 more teeth drilled and filled.  Yuck!

Master Bathroom-- Medical Room

Our house has way too many bathrooms for my liking.  So.... I converted the master bath into a "medical room".

This is my space to flush my sinuses, store my medication (away from humidity) and keep things I will need during a tune up.

Sorry for the blur. :(

This is the only surface that is used in this bathroom... 

See my sterile water in the mason jar?  It is already for me to flush out my sinuses.  

This is my flushing station..... salt, baking powder and flushing bottle. 

In this area where I also keep all of my thing necessary for a tune up (hospitalization).  Comfy blanket, suitcase, and bathrobes.  I also have small bags pre-filled with shampoo/ conditioner, lotions and such... things a person tends to forget when heading to the hospital for 2-3 weeks. 

No more wondering where a medication is or what to pack for a tune up.  Everything is in one room and ready to roll.  SWEET!!

Long Time No Hear From

Sorry I have been MIA.

Cardiac/pulmonary rehab is keeping me very busy.  I have hurt my knee so that has added a complication to exercising. I had to call in sick this week because my knee completely gave out and I ended up on the floor.  I am still limping around due to pain in that knee.

I am unable to go outside.  We have horrible air quality where we live.  I did go outside the other day to water the garden and ended up coughing for the rest of the day.  My health is more important than the garden.  If it dies... it dies.

I am staying busying cutting out quilt blocks and sewing a few together.  I have two projects that I am working on right now.  I will post pictures later this week.

Homeschool lessons are winding down and we will be doing our yearly testing and then enjoy a quick break before starting our next school year.

Never a dull moment... oh, for a dull moment to come along.

CF Dance

This kid is too cute.  I love how he make doing treatment fun.  SWEET!!

Neat Video/ Neat Story

Turning into a Blueberry

If a needle enters my body and bruise is sure to follow.  A little over a year ago I had to do a heart bubble test and my arms ended up looking like this:

On Friday I had an arterial blood gas draw/test. An arterial blood gas draw is painful.  They have to access an artery in your wrist.  After two shots of numbing drugs and then the IV cath this is what my arm looks like. 

1 day post arterial blood gas draw

A little bit of bruising starting.  You can see I even had bruising and swelling down into my arm.

By yesterday (2 days post test) it was looking icky:

Yep, even my hand is bruised now.  

It is a touch tender.  I can't use a raised mouse pad or lay it directly on my wood rocking chair arm.  

I am hoping it will fade sooner than later.

First Cardiac/Pulmonary Appointment

Yesterday I had my first of many cardio/pulmonary appointment.  I endured a stress test/exercise endurance test.

They got my heart rate up to 200 beats a minute.  I thought my heart was going to leap right out of my chest.  They took several units of blood.  All of this while I was riding an exercise bike.

My arm is bruised, my knees hurt and my calves ache a bit.

The doctor said that I did really well.  I may not be as out of shape as we had previously thought.  My heart did really good keeping up during the test.  Now I get to wait for the final results later on this coming week.

I hope I don't to do that test again any time soon.  It kicked me in the back end.

Now to start the rehab portion of this cardiac/pulmonary rehab.  I have my consults with the therapy department this week.

65 Red Roses Documentary

This plays Thursday night on OWN channel (Oprah Winfrey Network) 9/8C.

Check it out!!