Pleasant Surprise

Today was interesting.  I had a really bad reaction to a student’s cologne.  I coughed for over an hour.  I had to ask him to leave it made me so sick.  By the time I was done coughing, I was exhausted.

The best part was a call from my eye place.  They called to let me know my glasses were ready.  I was like what?  You told me over a week!  Nope, they were ready.  So, I picked them up after work.  Yahoo!!!  I don’t have to wear my sunglasses at night anymore.  (I leave for work at 6 am and it is still dark.)  I am so happy to have my new glasses. They are purple tinted.   I will see if I can get someone tomorrow to take a picture with me wearing them.

They decided to make my glasses in-house since I have been coming there for over 7 years.  Yes, loyalty does pay.

Have a great evening.

Secretary? What Secretary?

So, I spent today trying to move my arthritis appointment earlier and to make sure that I have my January appointment secure with the pulmonologist.  After about 15 tries.  I get a hold of the arthritis office at 1:30 pm – I was informed that the secretary had just left for lunch.  I found this interesting.  Most people don’t take lunch that late unless they aren’t coming back.

Either way, OK.

So, I tried the other doctor office.  I got the same young lady I got yesterday.  I asked if the secretary has returned from vacation.  The young lady recognized me and meekly stated that she won’t be back until Monday.  I asked her if that was a for sure answer.  I had been trying all winter break and this week to “catch” her.  She admitted that the secretary had been out during winter break, came in for two days (the two days I didn’t call) and then went on vacation.  Hello!  I want her job.

So, I am back to the same place….nowhere.

I will have to persevere and try the arthritis doctor office in the morning.  I sometimes forget to call because my day starts at 6:30 am, and even though the offices are open at 8:30 am, they don’t pick up the phones until 9 or a little after.  By 9 am I am deep into my own projects and phone calls to remember to call them.

Daisy was at work with me today.  She wore her new cowgirl dress.  I looked up how much a little doggy cowboy hat would be…$20!  I don’t even pay that for myself.  I guess the hat will have to wait until it is on clearance or Yerdle.cowgirl daisy

Dealing with Life

I don’t know if you understand the process I am having to undertake.  Lupus and rheumatoid arthritus are like MS and fibromyalgia.  They are diseases of exclusion.  So, to diagnose that specific disease, they have to prove you don’t have anything else.  Then there is the appointment times.  It is very much a hurry up and wait.  Run and get labs, NOW.  Oh, your next appointment is 6 weeks out.  If you change the appointment, the next one isn’t for over 12 weeks out.  Speak to the secretary? Are you kidding?  She won’t be in until Wednesday.  Which Wednesday they don’t specify.

The real reason I wanted to share today is that today has not been a very happy day.  My glasses broke early this morning.  Getting a replacement pair will take a week (if I want the free ones).  If I want to pay cash up front, I can have them tomorrow.  Since I am in the perpetual broke mode, I chose the week.  I only wear my long distance glasses when driving for the most part.  So, my sunglasses, which aren’t too dark, will suffice for now.

Then, I tried several times to get a hold of the secretary for the pulmonologist at UM.  I finally got someone from the office to answer the phone after my 5th try.  She won’t be in until tomorrow.  I was told that last week when I went in person to move my appointment date.  I left a message for her to please call.  I need to get a hold of her because I need help with all this disability paperwork.

With this breathing problem, I qualify for a discounted bus pass and a special program through our electric company.  But, these documents have to be filled out by the doctor or his representative.  I also have paperwork from school so that I can get extended time on assignments to be filled out also.  I need to know if the Dr. will do that, is there a fee per page (some doctors charge $20 per page) and how do I get them to her and then get them back.   I have decided to keep my January appointment.  I have a ton of questions now and I need a script refill.

Oh, the auditor from the state showed up today.  Our department happened to luck out this year.  He only wants to see a little under 20 files and only their SPED jackets.  Some of the other departments were hit hard.  OJT has to pull over 80+ files for review.  ESOL is always audited, so I am sure their files are immaculate.  I heard they only requested a little over 40 from them.

Then, one of my more competent office aides got a job.  So now she won’t be working with me anymore.  That is the whole point of working with me is to help them prepare to get a job.  I just like to keep the good ones until the end of the year.  I am happy for her though.  She will do just fine.  She learned file organization and customer service really fast.

This afternoon was Doug’s funeral.  I heard that my nieces Anna and Ceceila were in attendance as well as a lot of Doug’s acquaintances.  Sylvia said it was very nice.

Today’s reading was Psalm 61- Lead Me to the Rock – David wrote it.  I love verse 4 “Let me take refuge under the shelter of your wings.”  I just love the whole imagery of it.

Tomorrow I take Daisy to work with me.  She will be in her glory.  She loves greeting everyone.  When we get home, she will run up stairs and crash on my pillow for the rest of the day.daisy opinion

 

 

Let’s Talk about Homeschool

I have seen a trend lately with homeschooling here in South Florida.  It is on the rise.  Now, honestly, I have seen it go good, bad and then very ugly.  As an employee in a school and a parent, I understand the parents point of view.  They can control what is being taught, when it is being taught and accommodate any special appointments or relocations easily.  What the parents don’t see, I get in my office…..Here are few of my insights to encourage you keep your child in public school.

  1. Real world is mean.  It doesn’t care if your child is sensitive or not.
  2. Mental illnesses are fostered and coddled more causing the child not be able to cope.
  3.   It takes work to make sure your child is socially acclimatized.  If you aren’t willing to drag your child to various clubs, homeschool groups and sports, then you really don’t care.
  4. Once you start homeschool, sending your child to public school will put them in a state of shock they will never recover from.
  5. Some homeschoolers never develop the skills to communicate with their peers.
  6. You have taken the opportunity away of my child being your child’s friend.
  7. You have taken food out of my mouth.  By keeping your child at home, they are not counted for funding for the public school system.
  8. The curriculum will eventually get beyond your comprehension to assist with.  Who do you hire?  Guess what!  A teacher!
  9. You have to have the student’s portfolio review every year to make sure they are on academic level.  Guess What!  A teacher is the one certified to do that!  And you have to pay them.
  10. Homeschooling does not stop drug use, teenage pregnancy and malbehaviors.  It fosters negative behaviors because there are no other positive role models

I have seen the drug use in home schoolers.   I have seen teen pregnancy due to the fact that the girl grabbed the first guy who gave her attention.  I have seen a young lady graduate home school and go to Moody Bible Institute and become a wonderful preacher.   I have seen other cases where the young ladies married the first guy who said boo and ended up in domestic violence shelters.

Please, please understand, that homeschooling is admirable.  I even dabbled in it with my son for Pre-K.  He was driving me crazy.  It was a way to keep him busy while I worked with his sister.

But, you have to take the time to make sure the child is socially active.  I have been to many functions where the homeschooler will hang out with the adults and ignore age appropriate interactions with other students.  Also, if your child has a learning disorder, you may end up feeding it instead of helping the child to overcome it.

As usual there are always two sides.  I know plenty of moms who have made homeschooling work.  Those moms really worked at it.  Don’t go into it thinking it will be easy.  Be warned about the down sides and really think and pray about that decision.

Too Many Illnesses

As you can see from my previous posts, I have been dealing with a lot for the last 6 months and even more in the last two weeks.

Returning to work today was nice.  Back to the coffee routine, letters, running around (not me, the office aides), and teacher emergencies.  I was pleasantly surprised to have a school psychologist introduce herself and let me know she will be filling in on Mondays for the rest of the year!!!  I was so excited, I could hardly contain myself.  Actually, I didn’t.  I talked her ear off.  I gave her a list of all the students we need to see before June, introduced her to everyone I could, and explained a few personal things and how our office runs.  I then sent a thank you email to the psychology department chairs for North and North Central regions.  That was the least I could do.  I really did not expect to get a psychologist at all this year.

A well placed Thank You can take you farther than you ever know.

When I got home, it was still cool outside, ( it was 62 degrees this morning), so I took Daisy for  a little three block jaunt.  We didn’t get to do our usual 5 block walk this morning, so I wanted to make it up to her.  She was so happy.  I made dinner for her and me.

Then the landlord dropped by.  I was surprised.  I didn’t really expect to see him for a few more weeks.  He asked about the rent.  I felt horrible, I had mailed a check.  I was supposed to have this month in cash.  He understood and we had a nice short chat.  I promised to have cash for next month.  It is sort of an arrangement we have.  Every other month is cash.    Our landlord is wonderful.  God really placed us here with him.  I can’t think of anywhere else I would want to live.

Of course the visit disturbed my husband, whose agoraphobia has been running a little high lately.  After the landlord left, he asked my why I had mailed a check when I was suppose to have cash.  I told him that with all the doctor appointments and labs and death running around, it slipped my mind.  He continued to berate me.  I walked away.  (I have learned to walk away or tell my husband to go away when I am under attack by him.)

Part of me really wants to get furious at him.  How dare he!!!  I provide for everything.  He has not worked in 6 years, yet he has never missed a meal.  I forget to get cash for the landlord one time and you would have thought I had hung my butt out the window.  I know that this is his illness speaking.  But, sometimes all the understanding in the world does not help.  I am glad he went back to the couch and left me alone.  Things could have gotten ugly.  I work six days a week to keep us housed, fed, and the cars with gas.  God provides the clothing through friends who clean their closets periodically.  Does he not realize how much the oxygen deprivation affects me sometimes?  The answer is “No he does not”.

I am just waiting for him to ask me what is for dinner.  I am hoping he won’t.  Sometimes it is better to leave the bear (me) alone.  It doesn’t matter what I make anymore.  It either gives him gas or diarrhea.  Or he remembers it tasting better.

Example:  He and my son have been asking for me to make mini – cheesecakes like I used to when we owned a townhome for several years now.  I finally relented this year and made them even though they make me sick to make them.  (The flour makes me itch when I cook with it.)  So, I made them.  I even took them out of the cupcake pan and put them in a Tupperware to make it easier.  He ate four at one setting and then complained that his stomach was upset.  Of course it was, those things were so rich you could have a stomach ache with just one.  Eggs, sour cream and real philly cream cheese are basis for the cheesecakes.  That combo would give anyone the runs who have sensitive stomachs.  Yet, all twelve were gone in two days.  My son had a couple.  Now, my son said they were perfect and wonderful.  What did my husband say, “They were okay.”  I hate that statement.  Then he had the audacity to ask me to make some more yesterday with the leftover cream cheese.  I told him to take a flying leap.  Just because I had cream cheese in the fridge did not mean the other ingredients were available.  He has no concept of cost anymore.  Sour cream and cream cheese is expensive.  Then add the unsalted butter for the cookie crust.  It is a really expensive super rich dessert.  Besides, the two days of itching and coughing just were not worth the useless comments from him.  He wants me to make croissants next Christmas.  Bah! Humbug! is my answer.

With returning to work, I return to doing my homework.  Which I need to attend to now anyway.

Happy Monday everyone.

 

A Few Extra Details

I have been working at my job for 10 years now.  Little things I have learned is to check the office once a week during the summer to make sure everything stays the way it is suppose to and handle any emergency information the registrar may need.  So, After the chest cold, I went in just before my doctor appointment (July) to make sure that the waxing done in the office did not end up with the copier messed up or desks in the wrong place.  I did my cursory inspection.  I noticed the copier needed paper.  When I went to retrieve the paper from the storage area, I almost fell over.  The whole area had broken out in black mold and it was sliding down the walls. (EWWWW!)  I immediately called my direct supervisor who called the assistant principal.  They all just happened to be coming in that day to take of some paperwork.  The AP looked at the room and called in a report to the district office.black mold august 13 2015

I did tell the doctor of the mold break out at my first appointment.  At my second appointment, he gave me a script to get an Air Quality report.  He did feel that environmental concerns were pressing enough to request this.  (As of today, I have not gotten a copy of this report.)

I started the school year off keeping my office closed off from the rest due to the mold.  The paper was moved to another area until the room could be cleaned.  The principal paid for a desk top air purifier to help me.  The room was cleaned in September.  Of course the air quality testing was done after the room was cleaned.

Before I went to the UM specialist, I started a claim with Worker’s Comp.  This at the advice of several co-workers.   Everyone felt that since I have been the only employee in that office for the last 10 years, it would reason that maybe my health condition was related to the mold break out.  I did go to urgent care and it was confirmed that I do have a breathing problem (no kidding!).  Worker’s comp(WC) has continued to work with me.  Since there may or may not be a link to the mold, WC made an appointment for me to see their pulmonologist during winter break.

Getting back to my UM appointment.  It was at the beginning of December.  That morning it was raining.  I took a bus and then the metro rail.  It is just too much to drive down town and then pay for expensive parking.  The rail stop is only two blocks from the office.  Besides, it is always nice when someone else drives.  I went to see a specialist in the Cardiovascular and Critical Care unit on the second floor.  The nurse was really nice, but had a hard time finding my pulse and blood pressure.  I was taken to a room to lay down and then the vitals were taken again.  The Doctor came in next.  He listened to my details, read the copies and looked at the dvd from the CT scan.  During this time, an appointment person poked their head in and asked the doctor if he would take a late appointment.  He said no.  That impressed me, although I did feel a little for the person.  The rain had been relentless all morning.  Even the metro rail had stopped for about 5 minutes on the track due to the rain.

We talked about my medical history with asthma, arthritis, family history, etc.  After a decent amount of time, he pronounced that he thought I did not have the terminal type of fibrosis.  I did have fibrosis, there was no doubting that.  He did state that he considered it to be a connective tissue disorder (auto immune problem) or related to rheumatoid arthritis.  He wanted me to get an echocardiogram, esophageal fluoroscopy and more blood work done.  Since I was passed the beginning phase and in moderate damage to my lungs, he requested that I see another doctor at UM for arthritis and would like to see me back in about 6 weeks.  So, I spent the next 45 minutes with the check out person who helped me set up all the appointments, including the echo and floro.  The appointment for the doctor was to be in the middle of January and the other specialist didn’t have anything available until the middle of February.

The WC nurse and private contractor came in to do another air quality report since no one can seem to get a hold of EEG (who did the original in September) or a copy of the report.    That was done the week before winter break.  I had my appointment with UM doctor through WC last week.   He stated he also believes my fibrosis to be auto immune disorder related.  His nurse also had a hard time finding  my pulse.  (Seems to be a recurring theme here.)

Getting back to the echo and floro.  The UM calls me the day before the testing to let me know that the fluoroscopy was not covered by the insurance, the doctor had written an incorrect diagnosis and the echocardiogram was doing to be over $400 and how would I like to pay that.  I asked if I could be put on a payment plan.  I was promptly and rudely told no.  The hospital does not do payment plans.  All I could think of was “LIAR!”.  I told the person I could pay $25 now and then when taxes came in, the balance would be paid.  Again she said no.  I told her to cancel my appointments then and hung up.  I sat there and cried in frustration.  I know for a fact that  UM has payment plans.  I spoke to someone at church the Sunday before and they shared that information with me.   I called the UM doctor specialist office and spoke to a lovely young lady.  I informed her what had happened and asked her to please make sure my appointments were cancelled.  She said she would have to transfer me back to admitting.  I told her no, that I had already spoken to admitting and that they were not nice nor helpful.  She asked what she could do.  I was about to tell her that she could inform everyone where to go….I took a deep breath and wished her a Merry  Christmas instead.  She gasped.  I know she was expecting me to cuss her out.  I was the one frustrated, it was not her fault.  She wished me a Merry Christmas and told me she would call and make sure the appointments were cancelled.  I was so frustrated when I got home, I yelled at everyone, stomped upstairs to do oxygen and cried some more.  (Please understand that crying is the way that I relieve stress.)

I understand the doctor wanting everything done at UM.  Anything processed there gets added my electronic chart automatically so that nothing has to be uploaded, downloaded or anything of that sort when it comes to extra labs.  Out of my frustration, I called the radiology lab that had done my CT.  The appointment lady stated that yes, they did the two extra procedures there.  Then I called the insurance to make sure that the procedures were covered for less than $400 if I chose that place.  It was to be $100 only co-pay.  Done deal.

I made the appointments and went.  I had a friend drop me off and pick me up. I am so glad I did.  I had to fast for the floro.  She picked me up after and we went to lunch.  She politely informed me that I was walking sideways.   I am sure that fasting and then drinking sugared radiated chalk for the floro did not help me at all.  After lunch I was walking straight and felt a lot better.  The doctor at UM will just have to deal with scanning and uploading the reports to my chart.

Then the battery on the car died.  I had to deal with that…Do I repair the car or get rid of it and go in debt even more for a newer car?  A friend of my husband’s, we call him Uncle Frank, came over and helped determine that it was only the battery.  So, the money to pay the radiology lab now went to a new car battery.  God will just have to provide the money for the medical bill.

The WC doctor wanted a hypersensitivity test on me just to make sure that there are no environmental factors involved with my case.  So, I went to the labs at Quest.  Please understand that I like Quest.  But, Hialeah is its own unique kind of place where the rules of procedure and customer service do not apply.  The people at Quest informed me that the doctor had not specified which test.  I looked at the script and stated that it was the one regarding pneumonitis.  She stated that was the diagnosis, not the actual test.  She then informed me that they had called the doctor office and that the nurse would not be back until one.  I could wait until then if I wanted.  (Really?)  It was 11:15 am at that time.  I looked at them like they were crazy.  I asked if they could leave a message and deal with the doctor themselves.  I got a blank stare.  I was asked again if I wanted to wait.  I told them no, took the script back and went shoe shopping.

I found two pairs of shoes, but the outlet I was shopping at would not work with me about their BOGO sale.  So, I left there empty handed.  I was going shopping for shoes and dinner the next day with a really close friend anyway.  They could just keep their shoes and stupid rules.  I don’t know why I go to that outlet.  I always leave there mad.

After 1, I called the nurse who was very pleasant and asked her to please fax in the ICD code for the lab that the doctor wanted.  She had no problem helping with that.  I went back the next day and got the panel done.

What I have observed over the last six months with dealing with the labs and doctors is that something is inevitably missing from the orders when given.  Is that the doctor’s fault, nurses or secretary?  Not really sure…  I do feel that it is the pressure by insurance companies to railroad everyone to the cheapest facilities possible.  Also, the doctors are under the pressure to do extra testing before making a diagnosis.  As of today I have had three ANA testings with rheumatoid factors.  They have all been similar.  Why do this test so many times when the first one said URGENT! under the results.  Why didn’t the first pulmonologist say anything about LUPUS to me?  Why was it my primary to who talked to me about that result?  Obviously he suspected something with URGENT written on the lab report.  Also, why am I responsible to do the secretary’s job?  I should not have had to do the leg work and provide the copies for each time.  I just think that it is a poor refection on our health system.  If I had the money or a better policy, people would have been falling over themselves to help.

So, now I am waiting on the results from the radiology lab.  I will probably go next week to pick up a paper copy (I am keeping a copy of everything for myself!!!  Just in case.).  Having the blood work done at Quest, I will get an email when that lab is complete and the report ready.  I can log in and print it out.  I was told that the panel is sent away to GA for testing.  So, it will take about two weeks.  I should have it in time to see the doctor at UM in the middle of January.

School starts on the 4th and so I return to work.  It should be interesting to see just how busy the office is that morning.  I predict it will be pretty busy.  A lot of people move in and out of Hialeah during winter break.  There also always seems to be a rush to get copies of IEPs for Social Security.  I have a procedure  for that now, so the rush is not such an interrupter to my work flow.

I will say that I did not do well last night.  Even with the oxygen, I coughed for at least an hour around midnight.  I think the stress with my sister dealing with a death and me not being able to run to her to help caused the extra coughing.

In the mean time, I will keep waiting for that next steroid shot.  I would really like to stop feeling like I am breathing through a wet sponge, even if it is only a temporary solution.

January – dentist and pulmonologist at UM

February – rheumatoid specialist at UM

Let’s see what this year brings.  Closing thought…  If some secretary or office staff treats you right or nice.  Let the boss know.  All the bosses ever hear about is how bad an employee is.  I have made it a point since July to write letters to each doctor I have dealt with and let them know when a particular employee or group of employees have gone out of their way to help me.  I have decided to put my tears of frustration into praises.  May they make a difference.

 

Not so Happy New Year

I announced yesterday the sadness at my sister losing her husband.  I don’t ever remember her not being married to him.  They have lived in the same house for over 35 years.  I called her and let her know of my sadness at his passing and that I send my heart to her.

The main reason I have started this blog was at the advice of several key people in my life.  My therapist and several wise women in church.  I have gone through several trials in the last 6 + years that I honestly would never, ever wish on anyone.  I am hoping that my struggles through these trials will give others the strength to walk on.

Each year for the past four years I have had a saying or mantra.  Two years ago it was “Just Breathe”.  Last year was “Keep going – step by step” then it switched back to “Just Breathe” after I was preliminarily diagnosed with an interstitial lung disease called pulmonary fibrosis.  I want this year to be “I am an unstoppable Warrior” from the attached picture.woman warrior saying.

I remember the days when my husband was first having mental problems, it was all I could do to go through another day.  Now when I wake up, it is blessing and a present.

I am attending college via online.  It is a lot of work.  But I am loving it and have maintained at 4.0 GPA which has placed me on the President’s list for over 5 terms.  I have about 4 more terms to finish.  I should be done by this time next year.  God willing.

red carnation speakerThe picture of me speaking is from a speaking engagement of April 2015 at the Red Carnation Queens Event sponsored by Dr. Maritza Montano.  It is mostly professional women sharing their words of wisdom, financial and emotional triumphs and a splash of fun.  Be on the look out for tickets.  It is a fundraising event that includes a spectacular meal, freebies, silent auction and a drawing.  Some woman is given a scholarship to continue or start her education at a local college.  I was speaking about my view of my adventure of dealing with my husband’s mental disability and those who helped me along the way.

The adventure you will be joining me on will include my trials with getting disability for my husband, getting the correct diagnosis for my illness, receiving care, dealing with household burdens, maintaining a healthy relationship with Jesus and being a warrior in this age of helplessness and victims.

It is my goal to start everyday in the Word of God.  I read at least a paragraph to a chapter in the NIV version of the Bible every morning.  I am currently in Psalms.  This morning was 57 when David was running from Saul.  I also share “The Upper Room” daily devotional out loud at work each morning.  Several people stop and listen.  Some days God’s words speak more to me than others.

Now that you have some background, let’s start with the nitty gritty….

I got a chest cold in May near Memorial weekend.  It was the usual low grade temperature, mucus producing, achy chest cold.  But, after waiting two weeks, I knew something was wrong.  After three weeks,  I spoke with a dear friend and she suggested I see a pulmonologist since I have a history of asthma.  I thought, why not?  My primary had been wanting me to see one for years.  So, I made the appointment.  There was a month wait.  Not surprising for the Miami area.  You will die before you get to see a specialist.

I finally went that first week of July.  They made me do this test called spirometry.  I almost passed out and after about 16 times doing the test, I told the technician there was no more air to blow out.  An x-ray was taken.  I saw the Doctor.  Very nice man.  Out of professional consideration, I will withhold his name.  His staff was so very client friendly.  He changed up my meds a little, added Allegra D and sent me for a CT scan since the x-ray had signs of scarring.  (From my point of view, it looks like a cat got a hold of my lungs.)  He had the nurse give me a steroid shot.

Proceeding to get the CT scan was another adventure.  Trying to find one that does not charge your deductible was an adventure.  Finally out of desperation, I called my health insurance.  For once, they were helpful and steered me toward a radiology lab that does nothing but various radiology labs.  I thought I had it under control.  Made the appointment, faxed over the lab request and health insurance information.  Bam, the morning before the lab called and stated the health insurance would not cover the exam and it would cost me my left arm.  So, here I go doing someone else’s job again.  The doctor office was to call in the exam for an authorization prior to my scheduling.  So, I played tag with the doctor’s secretary until we got it straightened out.  She was very professional and helped me immensely.  She called me back with the authorization number in case the lab didn’t get receive it from the insurance company.  That only delayed the appointment by another week.  So, now we are at the end of July.

I should have known something was more wrong than just my asthma.  After receiving the steroid shot, I was able to breathe a ton easier.  But, not as deeply as in the past.  The technician during the CT scan asked me what seemed like five times if I smoked.  I repeatedly told him no.  I received a DVD to take back to the pulmonologist.

That was another three week wait.  Shock of my life happened next.  You always think that when you are told you don’t have much time left, you will accept it graciously.  I didn’t throw a fit, but I did cry on the way home while talking to my sister.  The doctor informed me that about a third of my lung capacity was gone.  Once damaged, the lungs to do not recover like a liver will.  I had a lot of scarring and was preliminarily diagnosed with Pulmonary Fibrosis (PF).  He shook his head and wanted me back in two weeks for more testing and a referral for a second opinion.  (Of course I looked it up on line.  American Lung Association stated that IPF diagnosis gives you anywhere from 2-5 years to live.  I cried some more.)

At the beginning of September, he had an oximetry test done.  Did not go as well as it could have.  He asked me if things had changed for me.  I said, yes.  Shopping was exhausting now, getting out of the bathtub was now very hard and trying on clothes would bring on coughing attacks.  He nodded and prescribed oxygen at night.  He explained that there were drugs to help slow PF, but once the scarring has started, it continues.   I was referred to UM specialists.

Wow!!!  What a difference.  Everyone at work immediately could tell.  My face was no longer puffy, I slept through the night and I felt re-energized.  My son commented after the oxygen that I had been coughing in the middle of the night in my sleep and now I was not.

I sat my son, daughter and husband down and explained the diagnosis and the fact that I was being referred to a specialist that deals with nothing but pulmonary fibrosis.  In the mean time I took advantage of my legal plan through work and had my will packet done.  I was able to get my health directives, living will, will and durable power of attorney done for free.  I let my pastor know and those I am close to at church.  I jokingly told him that I would be making an appointment to plan my memorial.  He just smiled.  He had known someone else who had the same diagnosis and the end was death after only a couple of years.  But, he said he would lift me up in prayer.  I told him that was more than I could ask.

I popped in to my primary for the annual wellness visit the health insurance required in late September.  I gave her a copy of everything from the pulmonologist.  She looked at it and then pointed out an unusually high reading on my ANA testing.  I had seen it, but didn’t really have a clue.  She suggested that maybe some of my problems over the last three to four years may be Lupus related and suggested me to see a rheumatologist.  I kindly explained to her that I could only afford one specialist at a time.  Of course, I ran home and looked up ANA and Lupus on the computer.  I cried.

The next step, the process of getting everything ready for an appointment at the UM specialist.  What a process in frustration.  First of all, all my records had to be faxed over including all my labs and tests.  It had to be sent three times!  I sent it once and the doctor’s secretary sent it twice.  Then it was assigned to the wrong doctor, having to start the process all over again.  I really appreciate the doctor’s secretary and wrote a letter to the doctor letting him know how she really helped me.  The appointment was to be in March 2016 if I was to stay with the specific doctor or the beginning of December if I would switch.  So , I switched.  And of course, I cried some more.

Next to come UM staff and latest labs and diagnosis……

Good bye at the End of the Year

It is with great sadness that my sister has suffered the loss of her long time husband Doug this afternoon.  I do not have very many positive memories of him growing up.  But, he had been sober for the last 22 years.  My last encounters with him were fun when I visited over the last couple of years.  He was not the man I remembered from youth.  He is survived by my sister Susan and his daughter Stacey.  I have attached a picture of them with my sister Sylvia on the left.  You should be able to figure out Susan (grey hair) and Stacey (the youngest).  The doctors have not released me for travel yet.  So, all I can do is send my heart to her via a prayer angel.  three mujeres

In the Beginning – there was the Word

red carnation speakerWelcome to Alayon  Inspiration blog.  I am the writer.  I will be sharing with you my passions, frustrations and drudgery as I go through my life dealing with a mentally ill husband, mentally ill daughter, gifted son, and lovable loyal dog.daisy in mk box  I sell Mary Kay on the side besides working for a very large public high school in the Special Education department.daisy opinionAs you can see… Daisy is a service dog in addition to being my paper weight.  I am currently trying to finish off my Bachelor’s in Business Administration through an online school.  I am loving it.  That is enough for now.  I will have plenty to say once the New Year starts.  Happy New Year everyone!