Author: Rachel Alayon

What am I doing?

Have you ever asked yourself that question?  Sometimes it is a reflextion of what you are currently working on.  Other times it is emotional or psychological.

I found myself asking this question frequently while holding my head in November at work.  Somehow my health was starting to fail again and what I normally did had become increasing more difficult.    I started working through lunch to stay on top of my daily duties.  I started 24 hour oxygen in November.

December was a short month for school.  But, again, I found myself once again asking the same question, but at home.  I had to start evaluating where I was in standing with the transplant process and/or retirement.  I had a virtual appointment with a Dr. from Mayo clinic in Jacksonville for January.  I just needed to make it until then to make a decision.  (Boy was I wrong.)

January came and went with a promise of being evaluated for a new set of lungs.  I still found myself holding my head a work asking myself “What am I doing?  What am I really doing?”  At the end of the month, my oxygen tanked and I couldn’t get it to come above 75 and my feet were severly swollen.  I left work early and went to ER.  I was immediately transfered to ICU.  I had thrown another pulmonary embolism (actually more than one).  My anti-coagulant had not done its job.

February started me out in ICU and missing FTE at work.  That is the week the state looks at all transactions, attendance, meetings, etc. to get funding for the schools.I returned to work using a cane and asking the OT at work how to use it and a walker.  A promise of spending spring break in Jacksonville at Mayo was being scheduled.

March was hard to get through.  Spent spring break being tortured by Mayo Clinic to see if I qualified for a double lung transplant.  Came home in a wrist brace with tons of bruises along with exhaustion.  No rest for the weary.  I was blessed with a surprise of two wonderful co-workers who stayed in the same hotel with us and helped us to survive that week.  I couldn’t have made it without them.

April was full of hope, yet I still found myself questioning as to whether I had done the right thing by returning to work after being hospitalized in February.  Just in case, I started the disability retirement packet to have ready.

I was informed that I did not qualify at the beginning of May for the transplant.  I was too small, not enough psycho social support and Esophageal dysphagia would cause too many problems.  Bottom line….I was too sick to survive the surgery.  I filed for disability retirement, spoke to the principal about retiring, working remotely twice a week again and stopped driving completely.  At the end of May I ended up in the hospital with pnuemonia.

Getting to the end of the school year was a challenge.   I made it.

It was nice to be recognized.  I am no longer asking myself what I am doing.  I am doing what i need to be doing.  Thanking God for every second He has given me each day.

Old Comfort

I spilled water all over my blanket the other night.  It was just water, but I didn’t want to sleep in a cold wet blanket.  Being exhausted from the day, I ripped it off the bed and proceeded to find another blanket.  At first I grabbed the fuzzy blankets that use for my lower legs.  They just didn’t feel quite right.  I finally grabbed this quilt.

This is a quilt given to me in the 1970’s upon the death of one of my mother’s sisters.  I was informed that this was a depression quilt made from old dresses of her sisters.  I have always loved using this quilt and had forgotten how comfy it is.

I slept really well that night.  It reminded me that new isn’t always comforting.  Sometimes it takes an item that has been hand crafted with love to fulfill the hole of lonelyness.

Old or new comforts, what is your “Go To” when you are feeling down?

I am sure God has provided you with something in your posession that fills that hole.  Mostly Him, prayer is always a good comfort.

 

My Tips for surviving being Critically Ill

I have been helping several people at my place of employment with their own medical needs.  I am pleased to be able to guide them to solutions with a my personal experience and a quick Google search for their specific need.  I wanted to take the time to include some tips by my Tyvaso nurse advisor and me.

 If using oxygen – small kit with chloraseptic throat spray, lozenges, small pack of wipes and saline nasal spray – oxygen and some nasal sprays are very drying, even on the throat.  This kit also helps those using inhaled medications.  I have a kit like this at work and my friend’s house.

Tyvaso users- Electric hot water kettle. – use one that heats quickly.  while brushing teeth, heat water and make a cup of tea.  Drink warm with sugar or honey just after inhalation treatment to soothe throat and help keep BP normalized.

Mio lemonade/Lemon Juice – I try to drink at least one up of some form of lemonade to cut the mucus in my throat.

4 – 6 oz grape (purple) juice.  Well, this is to help with depression, sleep and blood pressure.  It also keeps your pipes going.  Some medications are drying to the whole body.  The purple one has the best benefits.

Herbal teas – this has become hard. Because of the medications that are being taken, I have to avoid certain herbs and fruit.  I have found that I really like Market Fresh from English tea store.  It has bits of everything in it.

Set up your Tyvaso supplies before you go to bed, this helps cut down on the feeling of time wasted.  I usually have my round filters, medication ampule and plastic parts all in the same area.

Put your compression socks on within 30 minutes of getting up.  The compression earlier in the morning helps with emotional stability (like a Thunder shirt for a dog) and keeps the swelling down a little bit better.

Have a back up set of medication in various places.  I have one with my wallet, a week supply at a friend’s house that I stay with frequently, my purse, my oxygen backpack, and even in my pocket.

If you need to carry a rescue inhaler, make sure to take the time to invest in uniforms(scrubs).  I love the pockets.  You can also put your oximeter and a days worth of medication in your pockets.

Purchase a finger oximeter.  Put that in your pocket along with the rescue inhaler and a lip balm.

Sleep –  This can be most elusive due to the stress of being sick and medication side effects.  CBD products do help.  My doctor has stated that she is all for the CBD products as long as it is not “inhaled” or has the THC.  So, get the one without the T.  Buy a reputable brand.  Do your research.  I found that I like the products from CBD Distillery.  They have been verified and I have used the sleep products for months.  CBD is also good for inflammation.  I do avoid melatonin.  It can cause vivid exhausting dreams defeating the purpose of taking it.

If you experience GERD or respiratory issues, invest in a wedge for your bed.  If you have a bed that adjusts up automatically, then this is not for you.  Try to get a 30 degree incline.

If you can, invest in a grounding sheet for your bed.  This only helps if you have a fair amount of skin exposed while you sleep.  If you wear a full set of pajamas to bed, this would not be a good investment.  There are other grounding products available.  I also have a grounding yoga mat.    Amazon has various grounding sheets and Earthing.com is where I normally buy my grounding products.  I have found that this simple product helps with sleeping and arthritus pain.

Stay hydrated – nothing like stating the obvious.  But it is easy to lose track of time and forget to drink liquids.

Invest in extra chargers – What do I mean?  Well, I have a portable oxygen system.  I have car charger along with the normal charger.  I have taken the time to have a charger at work and one at my friend’s house.  That way I never have to panic that I might run out of air because my battery is running low.  The same thing goes for other medical equipment.

With regards to medical equipment, that is a financial thing you need to discuss with your family.  I have purchased a back up nebulizer and oximeter that I keep at friend’s house that I spend time there frequently.

Popsicles-  What?  Why?  Well, I have found that popsicles are the only thing that help with medication induced hot flashes.  There is actually several articles out on the web regarding this.  I found that I like the ones made from whole fruit.

Watermelon- This has been my miracle cure for leg cramps.  It hydrates, provides fiber and tastes great.  I found that one serving a day is all that is needed.  For some reason, it works better than a banana each day.

Most of all, breathe, breathe, breathe.  I am always being reminded to stop and take time for myself.  I still push myself too hard to serve others.

I hope this has been helpful for you.  May God guide you to the right health care team.

 

New Kind of Trouble

Did you ever really doubt the pain someone is suffering?  How their affliction affects them physically and mentally?  I have.  I have thought…they can’t be in all that much pain.  There is no way that disease caused that.

Well, I was WRONG!!!  Please forgive me for those whom I have doubted.

I have recently been blessed with a case of shingles.  I am pretty sure it was due to the stress of going to see the transplant dr.  It gave me high blood pressure, stinging nettles over the affected areas and the worse part yet === Terrible bone and muscle pain to the point of no sleep.  I used OTC pain killers to numb it some.

It took 3 days for the rash to continue its beautiful stinging nettle adventure across my body part around to my back and stopped at my spine.  Then the bubbles appeared.  Thank you Votaren for your pain relieving qualities.  OTC hydrocortisone did nothing.  I was really careful to not scratch or open them in any way.  I quarantined myself since I know my husband never had the chicken pox for a week until the bubbles started to deflate.  I called the Dr.

Dr. took me off of one of medications to accelerate the healing.  I am so glad that worked.  Here it is 2 weeks later, bumps are flat and falling off.  I am no longer contagious and pants don’t hurt that bad.

But….wait….

Now where the bumps were, my skin hurts to the touch.  It itches a little bit.  Nothing like chicken pox at all.  But the skin hurting is annoying.  I smear more Voltaren over them and hemp handcream.  It helps some.  Since bone and muscles still hurt, still taking OTC pain medication.

The good side of all of this, when the pain reliever kicks in, I sleep.  The rest of the time, I am forced to relax.  It is a shame that I had to get Shingles to slow down and relax this summer.  God knew I was plotting about cleaning my apartment.  So, He put a stop to it.

Oh well.  He knows what I need.

You know your Sicker than you thought…….

So….the last couple of weeks have been discovering that the medication is working, but I can’t take on the world yet.

I am quickly figuring out what I can and can’t do again.  It seems like a never ending process.  I am feeling better.  PROBLEM!!!  I then decide that the floor is too dirty, the toilet needs to be scrubbed, and so on.  I take 2 minutes to do 1 thing cleaning wise.  BAM!  I am hit with exhaustion beyond all belief for a whole day and high blood pressure the next day due to the chemicals.  The nurse flat out told me to stop cleaning unless I want to die.  Then who is going to do it?  There are so many issues with cleaning the house and particularities that it isn’t even funny.  To me this is a serious issue.  I would like the house to be somewhat clean before I head to Orlando and again when ever I return from Orlando.

Meal Prepping – due to the expense of frozen dinners and high sodium, I have started meal prepping for the week for dinners for Eliud.  Recently, I added lunch.  That doesn’t sound to difficult.  It is actually exhausting.  Even though it is just making instant potatoes and boiling ravioli and putting them in the containers with their meat for the week.  The next day, getting out of bed is harder than usual.   I asked Dr. about it.  Found out the muscles in the arms are shorter (okay, I get that) and use more energy to move.  So, therefore making me desaturate faster than if I walked across a room.  (Hmmmm.  Reason not to cook?)

School’s out for Summer –  I am supposed to rest.  Thankfully, so far that is happening.  But, I have learned that when I first sit up, depending upon how long I stare at the wall, will gauge how my day will go.  The longer I stare, I have noticed the harder the day is energy and breathing wise.  I have had one day of rest.  I got to watch movies all day.  It was kind of nice.  I am looking forward to a couple more days like that.  It all depends on what happens in Orlando at the end of this week.

No Emotions Allowed –  I kind of knew about this one.  But, I had an actual experience a couple of weeks ago.  I got mad and sad to an extreme.  I almost started crying.  Instead, my body decided to start throwing up and turn purple.  It took me about an hour to get my oxygen where it needed to be.  My husband was great, when he saw what was happening, he brought me a bucket and kept busy until I had returned to being pink instead of purple.  Bottom line, walk the middle of the road regarding emotions.  I can laugh, but just not a lot.  It makes me start coughing.  If I seem a little cold, it is because I have to right now.  The twinkle in my eye is me laughing on the inside.  Maybe after I have new lungs, I can have an all out bawl and laughter fest.  We can watch a Walk to Remember to cry and Dude: Where’s my Car? to laugh our butts off.

Watermelon to the Rescue–  I have never really had a lot of leg cramps or restless legs until the last 6 months.  There was one point where I thought sleeping was for the fortunate.  I would fall asleep, left leg would cramp.  So, I would sit up and wait for cramp to subside, walk around or massage it.  Fall asleep again, right leg next and so on all night.  I asked Dr. if anything to help.  Maybe meds causing cramps.  After researching, cramps in legs from Lupus.  I was already taking extra potassium, I didn’t want to get that too high (that causes heart problems also).  Medication for leg cramps interferes with heart medications.  Yep, no go.  I tried stretching, didn’t help.  I did try moving my bath time later.  That did help some.  I don’t bathe every night, so I tried the heating pad on off nights.  Again, that helped a little.  Then one day I bought a container of watermelon.  I ate half one day and half the next.  No leg cramps either night.  I quickly ordered more for the rest of the week.  Again, no leg cramps now in two weeks.  I tried researching what was so special about Watermelon.  It has the usual fruit vitamins, but I had been eating other fruit (including bananas) and they had not  helped.  I finally found a little article about how watermelon has some trace amino acids in it that actually helps with leg cramps.  But, the scientists can’t figure out how it works.  WHO CARES!!!!!  It does work.  I am unable to find that article again, I wish I had book marked it.  I still have restless legs now and then.  But not the pain from the cramps.  So I have to buy some extra watermelon.  I think I can handle that.

I wake up each morning and thank God for allowing me to see another day.  I then thank Him for all the wonderful people and things in my life.  I try to pick a different circle of influence each day.  I don’t have many circles of influence, but at least I have people to be thankful for.  My friend reminded me today that I am still here because God isn’t done with me.  He has a purpose for me to fulfill.  I totally agree.

Thank you for your attention.  Understand that I am not a doctor, nurse or any medical professional.  I am sharing my experiences to hoperfully make yours better.  May you find the Watermelon in your life.

 

 

 

Medication Update

Since I last wrote, more stuff has happened.  I started the Tyvaso and two weeks ago I finally got approved and started Eliquis.

Now, I am not going to lie to you.  This has not been easy.  The Tyvaso is a whole production every day, 4 times a day.  The Eliquis, just a pill.  Here is a link to a video of Monique demonstrating the equipment for the Tyvaso.  https://www.youtube.com/watch?v=gJlQp4V2lmA&t=55s

First Question after doing this for 6 weeks… Is the Tyvaso helping?

Well.  I believe so.  In the last week, I have been able to get to the car in under 20 minutes.  I can go up the stairs three at a time before stopping and catching my breath.  Unfortunately, bending over or any exertion requiring bending has not gotten better.    Some days even when my oxygen is at 90 or above, I still feel like I am gasping for air.  Other days, I am down to 85% and I feel fine.  No clue other than supposedly this can happen.

I have had some reactions to the Tyvaso.  I started wheezing more on Level 1.  Level 3 had me coughing more – added pro air inhaler to help.  Level 4 brought really bad headaches – Tylenol with half a cup of strong coffee to knock those out (it works).  Level 5 brought tight chest and achiness in chest.  So, it was dialed back to level 4 and doing  a slower increase.   Since it is taken 4 times a day, the amount of inhales you do can be adjusted.  I was at 5,5,5,4 over the weekend.  I graduated to 5,5,5,5 all the way across the day.  5 inhales first thing in the morning, 5 around 10 am, 5 around 2 pm and now 5 around 6 pm.

I was taking the last inhaling process closer to 7 and 8 pm, but somehow it interfered with my sleep.  Since I have had to get up early to start my medication routine (and now i get dressed slowly due to fighting to breath), staying up late is not an option.

There is a nurse assigned to you to be there when you progress up to next set in inhalations.  I am guessing they are there to make sure there is no immediate reaction to the next level of the medication.  (I feel like i am sounding like a gamer.)  They take your blood pressure three times during an hour.  Then see you when you are scheduled to go up again.

Right now I am on hold.  I need to get my lungs and heart used to this higher level.

My biggest gain has been to get off of Warfarin.  What a problematic drug.  It did what it needed to do, but there are just so many restrictions and side effects, it was making me miserable.  Then getting labs every week.  I can tell you now, I DO NOT miss that.

I still have anxiety attacks.  That is due to the lower oxygen level at the time.  Sometimes it has to do with being enclosed.  Taking a bath and shower are still a challenge.  But, I force myself.  No one wants me to be stinky.  Especially with all these medications.  Who knows what I would smell like?  I do make sure that there is someone close by physcially in the event I need assistance.

Some little tidbits I learned recently..

Did you know your blood pressure falls when you urinate or poop?  Tyvaso also lowers your blood pressure for about 30 minutes.  Lesson learned…go pee before taking medication.

Eliquis still has some same restrictions as Warfarin.  Don’t eat anything dark green, leafy green or anything green.  Be aware of fruit high in Vitamin K.  It can increase the affect of the Eliquis causing bleeding problems.

Things I used to take for granted:

Laughing, crying, drinking cold liquids, icecream, eating in general, going for a walk, going out to eat,  sleeping more than 4 hours, breezes, getting dressed in under 5 minutes.

So many things I either miss or wish I could still do.  I am still able to work.  Some days are good, some days are bad.

Traveling is out of the picture.  Being on continuous oxygen poses a real problem for that.

I still hope to get the lung transplant.  I am currently unable to get a hold of the coordinator for that.

In the mean time, everyday that I wake up is another day God can use me to His Glory.

 

Dr. wants a new pulmonary funtion test and echocardiogram to see if the Tyvaso and Eliquis are doing their job.

 

 

Here we go again- more tests

I have waited a while to let all of you know what has been going on since my last article.

I was given Warfarin to take until Eliquis can get approved.  6 weeks later and I finally got the Tyvaso the Dr. requested.  Still trying to get the Eliquis approved.  The Warfarin has a lot of side effects with it.  Of course, I am experiencing a lot of them.

Nothing makes me happier(not) than having to go get labs once a week for 1 vial of blood.  My INR (the level of something in my blood that has to do with clotting) has been either too high or too low.  6 weeks on this medication and we still can’t find the right combination of doseage to get it “in the sweet spot” or therapuetic level.

Then I found out the Tyvaso’s cost is astronimical.  I am okay this year.  But next year might be another whole issue.  I have to believe God will have something different in place to handle this or the transplant done.

Additionally, a special nurse has to come out to train me to take this medication.  It has two sets of everything.  I don’t even know where I am going to keep the set-up, medication and devices that are required.  On top of all that, I have to lug this equipment to work because the medication is to be taken every 4-5 hours.  Well, that is at least once during the work time or even twice.

I might be overthinking this.  If the medication does what it is supposed to do, then the anxiety about lugging it around will not be an issue.

Back to the next reality.  I had a great talk with my doctor yesterday.  I called her since my lab results were in.  But, I wanted to let her know that I was feeling worse again (similar symptoms to when I went in the hospital).  {I had briefly gotten a bit better.  Going down or  stairs seemed easier.  Getting to the car seemed easier.  I had more energy.  I didn’t desaturate as fast.}  The Warfarin is causing more petechiae (red dots on skin).   Additionally, I am desaturating fast again and taking longer to return to normal oxygen rate.  The restless legs at night is preventing good sleep.  My legs are swelling during the day and I had a terrible pain in my left leg the other day without any injury.  Bottom line, she thinks I am throwing off more clots (pain in leg) and need a diuretic along with an ultrasound of my veins in my legs.  More tests!  It is for my own good though.

Now, I am having a problem getting my medications from the local pharmacy.  I understand that all these winter storms are causing disruptions, but never have I had to wait more than 48 hours for a script.  I am on 6 days now for one that was supposed to come in Tuesday.  I was able to beg for a partial release.  I am down to 1 pill.  (Pharmacy wouldn’t let me fill it at 2 weeks.☹)

Then comes the family issues.  Even though I am home all the time, I wish I wasn’t.  Sometimes the negativity of it all gets to me.  I am able to escape to a relative’s house on the weekend.   They actually bought an oxygen concentrator just for me to spend the weekends with them.  With me being home, there are expectations that I can still cook, clean and do normal things.  Crap!! It takes me 30 minutes to just get dressed in the morning and they want me to stand and cook a full meal!  I don’t think so.  I have asked a family member that is in the house to help with the basics, that sometimes works.

I just don’t know.  I might have to hire help.  But, then I run into my husband’s social anxiety issue of having strangers in the house helping.

Doing simple things have become hard.  Walking to the kitchen to get a glass of tea, going to the bathroom, taking a bath or shower, getting dressed, pulling receipts for filing and  sometimes even eating is difficult.   These are just a few things I can think of.   Sometimes it is your family that don’t really understand what is going on.  On the outside, I just look like I lost a bunch of weight.  But on the inside, I am falling apart.

I give it all to God.  I have one more day before I return to my work schedule.  During this time, I will have at least a few days to work with the new medication.  I am really asking God for each breath, each minute of every day.  I have no other way to make it.  I am struggling not to laugh, that takes away my oxygen.  I am struggling not to cry, that takes away my oxygen.  I am struggling not to get mad, that takes away my oxygen.  It is really hard to stay even keeled.  I lost my cool the other day and started yelling at someone, next thing you know I was struggling to breath, my hands and feet turned purple, and I lost my voice.  So not worth it.

So, unto God I give it all.  May He comfort me and keep me calm.

New Answers to a Turn for the Worse

Well.  Well.  Well.

That is about all I have to say about what went down this last week.  It was all kind of sudden and scary.

So, the Pulmonary Hypertension Specialist needed some tests to see which medicine will help my heart and since I am so frail and critical now, the hospital. So, I did as she requested and went into the hospital through ER.  Of course, insurance wouldn’t let me do a direct admit.  So, I did it the painful hard way.   Only to have my doctor appear before me in the ER after about 2 hours to hand out some bad news.  I had an embollism in my lung.  Holy Cow!!!  I almost fainted.  My husband had just left.  Which I was glad, he would have melted hearing that information.  I just had a CT scan not even three weeks before and there wasn’t one.  UGH!!!!!!

I spent the next three days in the hospital being poked and prodded for all these tests that needed to be run (some of it was for the lung transplant).   I had several EKGs, an echocardiogram, another stress test for heart that had to do with inhaling ionic particles, liver scan, tons of labs (and my arms show it), respiratory treatments, and even anti-coagulants and water pills.

The best part was the team that attended me.  My daily day and night nurses were wonderful.  I had my own room and bathroom.  I was kept comfortable, although not allowed to walk around (didn’t want to anyway).  Three meals, snacks and drinks were always available.  The technicians for each test were kind and curteous at all times.  I couldn’t have asked for better care.

The heparin drip caused some problems with bruising.  Still recovering 4 days later from all the blood labs.  That medication is due to blood clot in my lung.  Still dealing with the complications of it.  Did you know that when you are on anti-coagulants, you have to get labs every week?    I am currently having enough problems just getting to work and now you want me to go out and get labs weekly.  Some days, it just seems to be too much.

Saturday afternoon, I was released to go home.  Guess What!!! Insurance messed up the release of my new medication for the embollism and I had to return to ER until something could be figured out.  I was finally sent home Sunday night.  It was hard returning back to the hospital.  Everyone was flipping out in my circle of influence.  I finally stated that God wanted me at the hospital for a reason and that I had to accept that.  Once I said that to myself outloud, I was able to move forward with getting help.

One person asked me about it…I told her that sometimes God says “no”.  This was one of those times and I did not have the bigger picture to understand why.  Only He does.

It was a great time to connect with God, share God with those around me and be an example to others.  God has my back.  I know that I am unhappy with some aspects of what is going on.  I also realize there is a much bigger picture than me in this.

May you find your inner peace in sharing God and being an example.

 

 

A Turn for the Worse

I have been delaying.  I keep hoping to have good news to share.  That is not the case.

Just keep getting worse.  I am now on oxygen 24-7.  I go to work when I can get my oxygen high enough and my heart low enough.  Getting to the car is my hardest challenge.  Some mornings, I can’t get my oxygen over 80 until after lunch.  I am unsure what is going on.

I did see the Pulmonologist the first week of January.  The prognosis was not given, but understood.  In the last 6 months I have lost 10% of my lung capacity.  I am under 50%.  The scar tissue around and in my lungs has gotten thicker.  My heart now has pulmonary hypertension.  All bad news.  So, I finally agreed to meet with the transplant team to see if I qualify for a lung transplant.  Found out that a couple of anxiety attacks during winter break were cardiac events (not sure what that means).  In the mean time, I have an appointment with a dr who specializes in Pulmonary Hypertension.

Since Christmas, my health has become more fragile.  Getting down the stairs in the morning is huge thing for me now.    Cooking?   Well, sometimes I am okay, somedays I am not.

Accommodations/Adjustments:  Little tiny fridge in my bedroom with snacks in case I can’t make it down for a meal.  Extra medications available for the same reason.   A gallon of drinking water and some mini juices just in case my glass of tea doesn’t make it to the next trip downstairs.  Switching to prepared meals.  Found a great Gluten Free one from Mom’s Meals.  I have had several.  Very tasty and not bland like the senior citizen ones.

Why don’t I move downstairs?  It is just a living room, half bath and a kitchen.  There really isn’t room for me to move there.

Here is an example of my  days:

Tuesday – went to work, seemed okay.   Didn’t quite drink enough liquids.

Wednesday-  Worked from home.  Couldn’t get oxygen over 85 to get to car.

Thursday – went to work.  Struggled breathing a little bit.  But made it work

Friday – couldn’t get heart rate down so I stayed home

Saturday – rested, but had a hard time getting oxygen up again

Sunday – oxygen was up above 93, but then my heart was racing

So, here I am again, trying everyday to breathe and live.

I want to take a minute and thank those who have really helped me these last 6 weeks and watched me decine.  Since I am trying to keep names out of the blogs…  my friends at the food pantry, my sister, husband, bosses, administrator, pastor, long time church friends, and the nurses at my work.  Thank you for taking the time to make adjustments to help me and care for me.

God has allowed me to walk this path for some reason.  He knows what will become of me.  I have cried to Him that I am scared.  I have prayed for healing.

Somehow, as long as He allows me to see each day.  I am doing good.

Something still isn’t right

Update time-

So, since I last told you about my adventure with this chest cold, I finally got in to see the Pulmonologist the day after Thanksgiving.  Ended up going on 10 days of a broad spectrum antibiotic and nebulizer twice a day.

Spent two weeks coughing up wonderfully grosse stuff.  But, I am still trapped into using oxygen for almost everything.   The coughing is finally dryer, but I am still struggling to breathe.  I even started having anxiety attacks going up the stairs from the car.

After having to sleep with oxygen for over a week now, which I have not needed in 5 years, I begged the Pulmonologist for more steriods and nebulizer medication.  Dr. wants me to get a lung transplant.

Been on it three days now, still waiting for improvement.  I know that getting better takes time.

I feel worse now than when I was first being diagnosed with MCTD.  At that point in time I was under a lot of stress.  Here we are again with me feeling horrible.  What are the extenuating factors:

  • Stress from lack of assistance at work, having to cover other jobs
  • Stress due to family emergency regarding immediate family member
  • Stress from holidays and being caught unprepared

So, besides being physically ill, there is a strong mental component.

I am spending the next two weeks redoing tests at the hospital to see if I am in a flare or declining severely fast.  After that will be another Dr. appointment.

I will let you know what happens.

Either way, this has kept me in constant prayer with God.  I thank him for every breath.