Is it Lupus or Not?

Well, still not gotten a final word, but getting closer.  I spent over an hour with the rheumatoid specialist going over every little detail to determine if what was happening was a symptom or not.  After about an hour and some diagnostic tests, the doc said it looks like Sjorgren’s Syndrome.  Just to make sure he has ordered some special labs for confirmation.  It looks like my body may have been attacking itself for over 4 years now.  It just took the forever chest cold to bring everything together in a whole overview.  They syndrome is similar to lupus, so it is easy to misdiagnos.

The doctor said he would be speaking to my pulmonologist in the next week along with a memo suggesting a treatment plan after the labs come back.  He said he would follow up with me via phone next Friday.  He did order a special lab that has to be sent to California.  I told him that I couldn’t afford it if the insurance didn’t cover it.  He said that he would make sure the insurance covered it.  I sure hope so.

He even gave me a homework assignment to look up the syndrome and the medications he put on paper for me.  He said that way I will be prepared when I see the pulmonologist in two weeks and be able to tell him which medication may be best.  He did state that he would work closely with the pulmonologist to make sure only one doctor is overseeing all the medication and treatment.

I told him about Daisy and showed him a picture.  We had happened to be talking about my decrease in exercising is how she came up.  He showed me a picture of his maltipoo and his pug.

So, at this point, I am neither happy or sad.  Just in limbo emotional wise.  I saw a video on Sjogrens.org that totally explained all my symptoms!!!  Feel free to explore the website.  All my mysterious rashes, fevers, malaise, fatigue, coughing, eye ulcers, left leg motion loss, and more are explained now.  Even the afternoon brain fog that I thought was a product of lack of oxygen is also part of the syndrome.

I will tell you to avoid the Quest Labs at UM though.  The lady was in a rush and butchered my arm.  I know the one over by Chuckee Cheese in Hialeah is a pain, but their techs are easier on the arm.

So, we end on a flat note.  Neither good, nor bad.

Closing Pillow thought…. Psalm 89 – You rule the raging sea; when its waves rise, you still them. vs 9 (NIV)

How Do You Explain your condition without sounding Self-Important

I had a wonderful time today spending time with a colleague at work during our annual African American Luncheon.  As usual it was good food with good friends.  My usual group of friends wanted me to sit with them.  I decided to go out of my box and sit with a different group of people.  I ended up at a mixed table of history, science and math teachers.  It was wonderful.

While waiting for the function to start, I was discussing with my son’s prior history teacher about how he was doing with cancer.  Somehow we ended up talking about me.  Conversations take on a life of their own.  He asked how I was doing and what was my prognosis.  Since I don’t really have anything concrete yet, I explained that it looks like I have Lupus that is attacking my lungs and my heart.  He just looked at me.  I was trying not to be explicit or get into the details.  I was talking to a man who had intestinal cancer 5 years ago and has had 5 back surgeries.

He asked about treatment.  I told him I have not started one.  I still have two more visits before being allowed to start treatment.  He admitted he knew nothing of Lupus.  He asked what were the medications usually given.  I told him that it is usually steroids or a type of chemo therapy to get the condition stable.  He didn’t have a comment.

Because I didn’t want to compare myself to him, I told him that I was continuing to work until I am told I am not to.  In the mean time, life goes forward.  He wished me luck.   I thanked him and stole away as soon as the next part of the function started for professional development.

I mean, how does one explain that you have been afflicted with a condition (can’t really call it a disease because no one is quite sure what causes it) that can kill and may have already put one of my feet in the grave.

Honestly,  the last two weeks have been hard.  My breathing has been harder to do and coughing fits twice a day no matter what asthma meds I take is really taking a toll on me.  I try to be strong.  But the tears still come and I worry that my lung function is getting worse.

Some days the next two doctor appointments seem like years away even though it is only a week.

Final Word from Worker’s Comp

So, I took today off because of the timing of the appointment to see the WC doctor.  I am glad I did.  I didn’t get back until after noon.  It was too late to go in at that point.  Remember, I leave work at 2:30pm.  You have to work more than 2  hours to get credit for half a day.

Getting back to the visit.  I saw the Dr.  He explained to me the hypersensitivity results.  He has never seen so many show positive on a test.  He then explained the difference between IGG and IGE results.  I sort of got it. Basically, the hypersensitivity test just proved his point that it looks Lupus with a dash of Rheumatoid Arthritus.   He gave me a copy of the report to share with my upcoming appointments.  But, my case has been officially deemed not work related and that I am to work with my insurance on a treatment plan.  (Yeah, right, after all my pockets have been cleaned out, our retirement suctioned dry and any hope of a settle future flushed down the toilet.)

The good news though is that the indoor air quality report suggested a really good cleaning of all ducts and units in my office area.  Therefore, WC will be following through with district about the cleaning.

I at least got out of this a third opinion of my condition and some clean air for me and my co-workers.

I did call my first pulmonologist’s office and spoke to the secretary.  I let her know the findings and that I didn’t know if I would be returning or not.  I thanked her for all her help.  She said that she would add me to her prayer list.   I said thank you again.

I know that when people say they will pray for you it may or may not happen.  Just the idea of this person who only knows me as a medical chart would even tell me she would, made my day less ominous.

New Name for Me

So, this week started a little rocky.  Who am I kidding.  A lot rocky.

My oxygen machine died Sunday night.  Got another delivered Monday, but it only worked in 30 minute intervals.  By Tuesday, I had gone two nights without oxygen.  So, I didn’t look too good, nor did I feel okay.  That is besides the point.  I have another machine now that has worked fine and I am feeling better.

Earlier in November a parent called me at 10:30 am in the morning wanting to know why the bus had not come to get her sons.  I asked about their names and the route that she was having issue with.  I then asked why she hadn’t called earlier so that I could have the driver come get them.  She angrily told me that was none of my business and if she could have the number to bus terminal.  I gave it to her and hung up.  Not even 5 minutes later, when I was in a meeting, she called back and left a message for me on the phone that said “Rachel, you are bitch” and hung up.  I don’t know what ever happened.  I am pretty sure the route supervisor asked her the same thing.  I reported it to my assistant principal over the secretaries in case it somehow got around to him.

This week was another thing all together.  Every now and then when the school is short of secretaries, I am asked to fill in.  I am able to help if I schedule myself correctly.  So, I helped on Friday and a repeat situation happened on Tuesday.  So, I helped.  Well, during this time covering  for a secretary in attendance, I was helping the adults in line to pick up their children.  A young black man came up to the desk and asked if he could pick up his brother.  I handed him the form he needed to fill out.  While he was filling that out, a teacher who had an injury came to me to fill out some worker’s comp paperwork that normally another secretary fills out, but she was out also.  So, I asked the young man to please go the next secretary and that she would be able to help.  He started yelling at me about how bad I was with customer service.   That I didn’t deserve a job.  He called me a racist and that I had refused to serve him because he was black.  I looked at him and told him he could leave and the door was behind him.  He kept on for a couple more minutes while waiting for his brother.  I finished the workers comp paperwork for the teacher and sent him to the doctor and picked up where I had left off in the line.

The next person was getting her attendance excused with a note.  I had her fill out a paper and under her breath so no one could hear her, she called me a bitch.  I looked at her and told her to straighten up or I was going to have her leave.  So, I referred her to the secretary next to me.  (of course she was black also)  Not even 2 minutes later her mother was in my face asking what had happened and if I had really told her daughter that I was going to kick her ass out of the office.  Please understand that this student is well known to me.  I hear from her teachers every day something negative about this child.  I looked at mom and told her she had cussed me out under her breath.   I then told her, “Mom, you and I never have had a problem.”  I looked at the girl, “You and I have always had a problem.”  Of course the girl threw a huge fit at her the top of her lungs stating how I was lying and that she had witnesses.  I looked at her witness.  It was another student of mine whose credibility was questionable.  So, mom took her back to an assistant principal to complain.  I do not know what transpired.  I just continued to help until the line was gone by 1:30 in the afternoon.

So by the end of the day, I was known in the attendance office as the “racist bitch”.  It was a wonderful way to end my day. NOT!  I left early since I had sacrificed my lunch to help.

I was upset and began wondering if I really was prejudiced.  I replayed everything in my mind.  If I am racist, I should be against all the Hispanics that have prevented me from getting a better job.  But, I treat everyone equal.  Or at least try to.  My husband of course saw I was upset and subsequently became upset also.  He took my cell phone away, told me to take a hot bubble bath and come down to watch a show with him before I worked on my homework.  There is nothing like a hot bubble bath to calm me down (and a glass of wine works also).  During my time alone in the bath, I prayed for those young people.  I prayed that God would give them a dose of what they had given me today.

The following day, our parent liaison came in asked me what had happened.  He had come out of his office when he heard the black guy yelling.  Then he had heard my name being thrown around and under a couple of buses  back by the Assistant Principal.  I told him what had happened.  He looked at me and told me not to worry, they were crazy.  That is the point.  I deal in crazy everyday.  Why was Tuesday so different.  Who knows.

I do know that praying helped me.  I really wanted to choke the young man and spank the young lady.  But, bodily harm is not good enough.  So, I gave it to God.  What He can do  will out surpass anything evil I can come up with.

Neither assistant principal that had to deal with the accusations of the young girl have come to ask me my side of the story.  Either they discount the girl due to her past behavior issues, or I will be thrown under the bus at review time.  Maybe they sent the parent liaison as their information gatherer to see if talking to me would even be worth it.  It doesn’t really matter that much.  Time goes on, more people see me every day.  It is just one bad out of several hundred good.  God has my back and those two will be dealt with on His terms.

So, whether I really am a racist bitch or not, it is not for them to determine.

I should have gone to work

Today is Marin Luther King Day.  It is also my daughter’s birthday and a day off.

I might have rested more if I had stayed at work today.  But, since the whole government took today, I did too.

It was nice and chilly this morning.  With the wind blowing, I couldn’t risk an asthma attack, so Daisy and I did laundry for the first couple of hours today.  Then, feeling the cleaning mood, vacuumed and mopped our bedroom.  Still feeling the cleaning bug, cleaned out two drawers in my daughter’s room to give to charity.

I joined my daughter and her finance with his mom at Denny’s.  Of course, I was the primary mode of transportation.  It was a nice time.  Nothing too exciting.  I gave Moriah her birthday present along with some socks and sunscreen she had left at home.

Returned home to find that the company had already dropped of my replacement oxygen compressor.  Mine died last night around 10:30 pm.  Decided to oxygen up since I was feeling exhausted.  The new machine died after 20 minutes.  So, I called it in again.  The tech called and stated that it was my surge protector.  I moved a few things around and tried it again.  The compressor would not work.  I called in again.  I was politely told that the machine that had stopped last night was working fine at their office with no problems.  REALLY!  Even after over an hour?  Yes, I was told.  Ok, what about this one?  I was told to try another outlet.  I did, got 10 minutes more.  So, my husband and I rigged up a different outlet again.  Same problem. I called it in again.  The technician was gone, I would  have to wait until tomorrow.  The person suggested I call my landlord and report that the apartment has problems due to the storm yesterday. (Honestly, it could have problems, but more likely the whole neighborhood would be having problems.  How do you prove that?)

Maybe…….The machine is an energy hog.  My electric bill went up $10 a month using this machine and that is with the averaging program.  So, in essence it went up higher.  Also, for a machine that sucks up so much energy, it does not have a grounding prong on the plug.  Then the technician who dropped off the machines admitted that they had been having a problem with the switches burning out really fast on these machines.  My last machine lasted three months.  It is used about 8-9 hours a night with about an hour during the day to recharge me after work.  That is it.  It isn’t run 24 hours.

Now, if it was my electrical power in the apartment, other utilities should be suffering.  A/C ran this afternoon without a problem.   Refrigerator (other big electricity hog) is operating fine.  Where is this problem?  Just my bedroom?  I doubt it.  The electrical box is small and the electricity for the rooms is not divided.  So the whole house should be experiencing problems.  TV still working.  Lights have not been fluctuating.  Question….Do I call the landlord or not?

Hubby says no.  What would he do?  Nothing.  The machine is not of his concern.  Now if the refrigerator or stove had a problem, then he would be concerned.

So, we will try the replacement out tomorrow.  This will mean two nights with out oxygen.  I hope I will be able to function tomorrow.  If not, I will be coming home early.

Daisy loves that.

I ended up working three times harder between the laundry, cleaning and moving furniture to get to outlets than if I had gone to work.  Some times it does not pay to have a day off.

 

 

Sunday Pillow Talk

Every Sunday I wonder if I will cop out and let my pillow talk me into staying at home instead of going to Church or working the food pantry.  Every Sunday I get up, get dressed and go to Church and then work the food pantry.

There is just something about going to church that completes me.  I try to listen to the sermons, but I will admit that my mind is sometimes somewhere else.

Regarding the food pantry.  I go because I need help to feed my family.  Secondly, because the work is physical, it is nice to help doing something I can do in my current state of health failure.

I was praying for the food pantry on Wednesday and I kept having this slogan go through my mind…..Training today’s youth to be tomorrow’s Life Changers.  I couldn’t sleep, I knew I had to tell the director of the food pantry.  Once I told her, a peace came over me and I was able to sleep.

Then there was today.   We happened to finish early due to new servicing protocol.  So, the director and I were talking.  I got her caught up on the family news, she prayed for my husband’s disability to be approved this year and then she asked me what I thought about this year for the pantry.  I got a weird feeling down in my core of my bones, looked her straight in the face and told her that I truly felt that God would have her at a different location by the end of the year.  She smiled and said I was the 5th person to tell her that since the new year.  I told her that God was going to make it happen.  She asked how I knew,  I just told her I felt it in my bones.  How does one explain what God whispers to their inner being?

My words to you my friend, is to keep up reading the Bible on daily basis.  Eventually God will talk to you through it.  Keep going to church even when you  don’t want to.  You may make someone’s day.  In fact, you may make your day a whole bunch better.

Finally, pray.  Talk, yell, scream, cry.  God doesn’t care.  He is always listening.  But, remember, He speaks back to us through other people and the whispers in the quiet.

 

Nature Show – Front Row

Yesterday was Daisy’s birthday.  On the way home I bought her a cupcake from Publix.  As I was turning right onto Okeechobee (6 lane road), a rat ran around my car from the back and decided to take the traffic head on.  I was impressed with his determination to cross all 6 lanes to make it to the river.  He didn’t make it past the first lane closest to me.  After being run over by one car, the rat kept going, pushing with his legs to get to the next lane.  The next set of cars totally missed it.  Then a big truck got the rat.  All that was left was a splat on the road.  I was totally captured and horrified during this episode of Nature.

When the rat first got hit, I wanted to jump out of my car and go rescue it.  Thank goodness my sense of reality kicked in.  I would have been toast running into three lanes of traffic for a river rat!  I couldn’t turn away as each car just kept coming.  Even the guy in the car behind me was enraptured.  Finally when the traffic cleared, I turned right and drove the measly two blocks home.

Life is so fleeting.  You just never know when it is to end.

So, I end this post with a picture of my dog.  We had just sang Happy Birthday to her and I was helping her to blow out the candle, she turned and licked me.  Nate got that picture.   There are some days where Daisy is what helps me to return to sanity.Daisy 6 birthday

I just have to remember that I am an unstoppable warrior each and every day.

It’s Not Covered

I have waited to spend time with you again.  I was waiting to see if I could get something done in a week without the disappointment of the medical field assaulting my intelligence.  I guess I was wrong.

I received a letter from my lovely sucky health insurance that they will not cover the cost of a procedure I had done during winter break.  The diagnosis did not support the lab.  REALLY!  The diagnosis was Interstitial Lung Disease (ILD).  Which means scarring in the lungs.  Now…..thinking about this….The insurance has already paid for my other labs with regards to this diagnosis.  Why stop now?  They decided that an echocardiogram is not the right exam for ILD.  I don’t know about you, but thinking that person may have depleted lung function may just warrant to make sure the heart is functioning okay?  By, the way, I am sure it isn’t by the way the lab tech kept going over a particular valve again, and again, and again.

So, now I get to waste tomorrow calling my health insurance to dispute the letter.  Then I get to chase down the ever elusive doctor insurance processor at UM to see if I can get it authorized to get the insurance to pay for it.  If not, well, God will just have to provide the money.  Because my coffers are empty!

God, I need you take care of this.  I am out of solutions and out of patience.  I am tired of having to do everyone’s job just to take care of myself.  Guide me to some people who can really help me tomorrow.

Busy non-productive day

Today’s reading Psalm 64 – favorite verse 2 – “Hide me from the secret plots of the wicked,”

Today was one of those days that if you ranked me on productivity, I would have gotten 1 or 2.  I did get about four letters done.  I needed to have gotten done about 15 and finished uploading the paperwork needed on those last four IEPs on my desk.  Did it happen?  No.  Then what did I do all day….

I helped students make photo copies for teachers, answered numerous phone calls, reviewed paperwork trails for student support teams, met the new psychologist for Fridays, coached a teacher on an IEP issue, reviewed some policies with my supervisor, confirmed next weeks appointments with district personnel,  and made a parent feel welcome.  I must have seen more than 50 people and spoken to at least that many if not more.  My office aides were a little miffed that I didn’t have anything for them to do.  I told them that for me to have projects for them to do,  I have to be able to do paperwork.  Today just wasn’t that day.  I did explain the process of customer service and what various aspects of it that I fulfilled today.

Some days I am the queen of paper.   Days like today, I am counselor and comforter.  My job is more than just paper.  It is people related.  Today was more about the people than the paper.