Category: Health

Let’s Talk About Accommodations for School

Ladies and Gentlemen,

Please excuse me…I have to get this off my chest.  It is eating me up inside.  So, if it sounds like I am yelling, I am on the inside, I probably should be on the outside.

I got a call today from a counselor.  Lovely lady whom I have had the pleasure to work with at another school.  She called to tell me (a day after open house) that the parent of soandso was in her office and that the teachers are not giving her daughter the 504 accommodations from the memo I sent out two weeks ago.  I asked the counselor to please ask the parent if the student has spoken to the teacher (this is self advocacy) about the issue?  Has mom spoken or emailed the teacher?  The answer was no.

Now the next part I am going to type is what when through my mind in a flash.  This child is not diabetic, nor does she suffer from seizures.  She has ADD or some form of it.  She is to get extended time on assignments, frequent breaks and extended time on tests.  I did the memo, I made sure each teacher, testing chair, counselor and administrators got a copy.  I deal with students who can’t even say their name or feed themselves and this child is whining about a break?  I have a break for her.  Additionally, in the real world, no one cares!!!  It is not my job to make the teacher read the memo, nor to check the classroom to see if the teacher is following the suggested accommodations.   A 504 case is not worth my effort.  I just spent 6 years getting disability on my husband and in the process working so hard that I am now so ill I will probably die before I can enjoy any of his money.  And this girl who can walk, talk, eat, drink and go to the bathroom with a normal IQ is worried about her accommodations!! Give me a break.  I am not paid enough for that.

I calmly told the counselor that there was a hierarchy of contact that needed to be made.  The child must first advocate for herself.  Then, when that fails, mom needs to speak to the teacher.  When that fails, mom can speak to the counselor or get an administrator involved.  This office only provides the 504  and memos.

The counselor said thank you.

I just put my head in my hands and thought, are we raising a bunch of victims?  Has the food become so poisoned that everyone is handicapped in some way?

I just spent a year going through the process of trying to find out what is wrong with me(still don’t know completely).  I had to apply for a disabled parking pass, buss pass and working accommodations.  I had to jump through hoops to get those.  Then there are the loops and hoops and red tape I jumped through to help my husband and daughter and still jumping.

I so wanted to stomp over to the office and tell the girl to put her big panties on and stop whining, and give her a tour of my most special students who REALLY NEED ACCOMMODATIONS.  I restrained myself.  Also, if the parent was so concerned, why didn’t she ask to speak to the teacher last night at open house.

Parents – teach your children how to talk to teachers nicely.  Teach them that the real world is mean and most people don’t care you have a problem.  They look on the outside and see a perfectly healthy person.  You either accept that or not.

 

 

I know I am not doing well

Due to last weeks adventures with the doctors, this is what I just posted to my school professors….Understand that my heart is tender at this point.  I was hoping to be almost back to normal.   I am not.

Dear Professor,

As you know I have a condition that has caused me to get accommodations through Kaplan’s disability.  This means lots of doctor appointments, medication and therapies.

In a recent visit, it has been determined that my drug therapy has slowed my degradation, but not to where I can remain totally functional.  The doctors have decided until I get some tests done before determining which drugs to try next.  These will be scattered over the next couple of months.

The reality is that I am not getting better.  I am finding it harder and harder to concentrate and the pain and exhaustion is unrelenting sometimes.  I am determined to finish school.  I have only one more class after this term.  The capstone.

I will do my best to meet all your deadlines and provide professional work.  In the event I am late,  please allow me the standard allowance.  I am determined not to turn in anything late anymore.  I will strive towards that goal.

Everyone asks me if I will leave my job when I finish school.  At this point, I think I will be happy to finish school, celebrate, and be happy I have a job that I can do with my condition as it is now.  I had high dreams when I started this journey with Kaplan University.  I have had wonderful teachers every single class.  Including you.  The reality is that I really don’t know how much longer I will be able to work.

I have remained in contact with my education advisor.  She is aware that I am contacting you regarding my illness.

Thank you so much for your valuable time.

May you have a wonderful day.

Sicker than I feel

Alright, I did this aerial yoga class.  I thought that would be a great idea.  I wouldn’t have to worry about getting up and off the floor.  Everything would be done in a silk hammock swing thing.

Boy was I wrong.  It was the hardest exercise I have ever tried.  I was soaked through within 5 minutes.  The poor instructor had to stop every few minutes to help me, and sometimes even she gave up on me.

I was so proud of my self this summer.  I could do 10 push ups, 40 squats, 65 leg lifts and walk up to 7 blocks.  I really thought I was pushing myself.  After taking this class, I see that I am not where I think I am.

I should be better.  Yet, the reality is that the medicine has slowed my decline, but has not arrested it.  Nor has it made it better like predicted.

Of course, the instructor stated after the class and I was about ready to cry, that I would probably like a different class that was more relaxing and less difficult.  I wanted to strangle her at that point.  I had told her during my reservation that I was not well and was looking to the yoga to help me.  I have taken regular yoga in the past and wanted to try something new.  I asked her why she had recommended the class that she had, she just said that all first timers are recommended to go to that class.

Well, I might be back.  I like the studio, the smell and the attention of the instructor.  I did tell her that it probably wouldn’t be until January after I finish my classes.  (Christmas EVE everyone!!!)  I was told to take the radio frequency class.  It uses the sling, but lower to the floor and more floor exercises.  I have a break again at the beginning of October.  I might pay for that class then.  It will give more time to hunt down other yoga classes.

In the mean time, I am fighting depression again.  I just want to stay in bed and let the world pass by.  But, Daisy has to go out.  She loves me and even makes me smile when all I want to do is scream at the world.

I am glad that I did try it though.  It was a good reality check.  The reality is that I might not get stronger, might not get better, today may be as good as it gets and the first diagnosis of dying in 5-8 years may be the real outcome of this adventure.  Either way, I will do my best and be grateful for each day God grants me and try to find a silver lining in everything.  Also, I slept really well last night after the yoga.  I forgot how nice it made me feel.

I might have to rig something up in the bedroom so that I can do my Rodney Yee discs I bought about 10 years ago.  At least it will keep me limber and help me sleep when it eludes me.

Reality Check!

So, today being the first day of summer break, I started it off with pulmonary labs at the UM.  I guess maybe I should have given myself a day off before doing that.

I was at the UM as requested and processed through admissions.  I was then instructed on how to get to the 4th floor for testing.  The normal spirometry was done.

Then the 6 minute walking test.  Now, understand I have had these before.  One last fall, where in 4 minutes I was below 90%.  Another this last spring where I did not go below 93% oxygen.  So, to my surprise, after 6 minutes of walking I was at 80% and my fingertips were blue again.  At least now I know what blue fingertips mean….I need oxygen.  As soon as they put me on the oxygen I went up 100% immediately within a minute.  So, I was instructed to do the test again with oxygen.  I immediately dropped to 89% and stayed there the whole time even dragging an oxygen tank behind me.  The technician said I was at the border of 90%.  The doctor will have to decide about any further action.

Here I was thinking I have been on meds for a while now, feeling good, looking good.   I should be able to breeze through this.  WRONG!

I know I am not a doctor.  But, this is bad.  I am worse than when I took this test last September.  I am suppose to be getting better.  I feel better.

Next round is blood work on Friday.  Then the following week has me seeing a sleep study expert to see if my oxygen problem is sleep apnea related or just scar tissue related. (I think I already know the answer to this one.  But the sleep apnea machine is cheaper in the long run.)  Then it is back to the main doc the very next day for consultation.

It looks like I might need to order a tank for hurricane season to have in the event we lose power this summer.  So far, I only use the oxygen at night.  It looks like I really need it when I am walking.  How depressing.

I was looking forward to walking in a 5 K this fall.  I guess I set my hopes to high.

The Date Is Here!

I have mentioned before that I have been struggling while waiting on the court date for my husband for disability.  Well, it is here (about two weeks out).  We, and I say we, have spent the last two weeks running to the VA to get paperwork filled out.  Now we will spend the next two weeks doing it again, because the physicians don’t want to fill it out without him present.  I understand that part.  But, do they understand that I have to be dragged along each time?  I am sure they don’t.  I did tell the attorney that though.

This has caused my condition to flare up.  I have been exhausted no matter how much I sleep and my back arthritis has returned.  The timing of the court date was perfect and not so perfect.  I am out for summer, so this works to my advantage.  The not so perfect part is that I have had to pack up my office for construction while worrying about my doctor appointments and finding time to run him to the VA for everything.

My hopes are that the judge will give him the full amount.  At this point, I would be happy with almost anything, as long as it makes it easier to pay the bills.

I will be done with school by December 24th.  At that point, I will be open to new opportunities with the educational system or somewhere else.  I will let God guide me to where I need to be.

I will let God be the final say about my husband’s disability.  I will have to be content with whatever is decided.

I have Survived-Graciousness

Okay, I have been thinking about this past year.  It has been an interesting one to say the least…

In the last twelve months…

I have had a forever cold which wasn’t a cold.

I have survived several sets of unknown fevers only to find out the fevers were scar tissue expanding in my lungs.

I was told I might have 5 years to live.

I finished another year of school.

I have been told I have Lupus.

I have been told I have Sjogren’s Syndrome.

I had my fingers and lips turn blue every day for over a month.

I prepared for my death and what I would be leaving behind.

I was denied an advancement in my job.

I have been told I can’t leave my job.

Trying on clothes is exhausting, so I can no longer shop in the malls.

Walking more than 5 blocks seems impossible.

I had to beg my husband to cash in his retirement to ease my comfort driving.

But, through all this….I have had never ending prayers from church friends, leadership, work friends and family.  I am sure even a few strangers have prayed for me.

I have believed that God has a plan for me.  I have seen provisions when I thought I was at the end of my rope.  Groceries have been provided when the refrigerator was empty.  Friends have taken me out when I was at my lowest emotionally.  Miracles surprise me each and every day.  Even if it is just the sound of bird song at 5:30 am while I am walking Daisy.

There are some hurdles still.  In fact, I don’t expect the list of hurdles to get smaller.  God likes me in prayer mode.  So, having struggles keeps me on my knees.

Upcoming hurdles that I am struggling with prayer wise-

Court date for disability for my husband.  I know what I want.  I just don’t know what God wants for our family.  I have to believe God will continue to provide for our family.

I need to expand my exercise routine while avoiding sun exposure (due to medication).  Have you seen where I live?  I live in Florida!!! Sunshine state!!  Looks like the 6:30 am walks will be in order for this summer.  I have to believe that God will give me the strength to do this.

College ends Christmas eve.  What a nice Christmas present!  A Bachelor’s degree!  But, then what?  Should I look for a different job?  Should I stay?   Does this all depend upon what happens with my husband?  What doors will God open up for me with this degree?  I have to believe that God has something incredible for me this upcoming year after I finish school.

My sister is ill.  I want to go spend time with her.  Yet, due to my medication, travelling is another hurdle.  I have to believe I will get to a place in my treatment plan that I can go see her with the least amount of complications.  Only God can make that happen at this point.

Ultimately…I have to Believe God will see me through Everything.

 

 

MCTD = No Real Name

Spent the afternoon traveling to and from UM to see the rheumatologist.  I was curious to see what he would have to say about the $3,000 test that was run in CA that I am now stuck paying $300 on.  (I guess it is better than the full amount.)  He was pleased to see the difference in my hands and face immediately.  He explained that what I have is complicated (No S@#$ Sherlock!).  The bottom line is that since I tested positive for Sjogren’s, Lupus and Rheumatoid Arthritis and there are some other factors that I tested positive for, it has been decided that I have Mixed Connective Tissue Disease (MCTD).

What does that mean in the long run?  Who knows….To me it just sounds like they have no clue what is really going on with me, but the doctor is happy the treatment is working.

So, the autoimmune medication is being upped and I have been put on progression plan to down my prednisone.  I need to increase my exercise a little bit more and take off the weight I gained from the prednisone.

Nothing new there.  The only thing new I discussed with him was the burning tongue and tingling lips.  He thinks that it could be symptom related instead of medicine related.  I guess I will see as I transition over the summer to a higher dosage of the medication and get off steroids.  I will still be on the anti-bacterial due to the medication.

He did give me an exercise to help with the arthritis in my hips.  I will start that Saturday along with pushing 6 blocks for the doggie walk.

Not Sure How to React

So, today I am not feeling quite right.  Now, due to so many changes lately, I am not quite sure what to attribute my ill feeling to.

I changed my prednisone on Friday down to 10.  That is great.  But, yesterday I had a reflexology foot massage.  I got nauseous during the massage (it sometimes happens due to the release of toxins).  Now, today my right lymph node under my tongue is a little enlarged and my throat hurts.  So, the question is am I getting sick, or is the aftermath of a wonderful massage or is it my body reacting to the prednisone reduction?

Go figure.  This is so complicated sometimes.  So, I am drinking extra fluids, drinking soup and I took some extra vitamin C and probiotics just in case.  I guess tomorrow will tell me the truth.   If I feel the same or worse, I know I am getting sick.  If not, then it was the medication adjustment or the massage.

Month Check Up – Good News

Good news.  The medication seems to be working.  I took my notes to see the doctor.  He was very pleased with my progress and has reduced the prednisone considerably.  I had already asked two weeks ago to have it reduced because it was starting to over charge me.  Insomnia city!

The following was decided:

  • No more advair until completely off prednisone.  No need for double steroid use
  • Continue with labs every four weeks to keep track of blood counts
  • add anti-bacterial medication for next three months, three times a week.
  • Keep walking four times a week and try to increase distance beyond 5 blocks
  • Sjogren’s syndrome has been officially added as part of diagnosis.  He still thinks that I may have more than one auto immune condition.
  • Prognosis is good.
  • Special sleep test, bone density test and full pulmonology tests are to be done before return visit in June.  Depending upon those tests, I may be able to get rid of night-time oxygen, singulair and other allergy medications.

Now, let’s talk about this from a long hindsight back to my childhood.  We briefly discussed how I have always responded well to steroids.   I told him that my mother and sister’s both stated how I had a dent in my butt as a child from all the steroid shots.  Supposedly I was born having an asthma attack (according to the stories from mom).  Asthma was just being treated by new drugs at that time (mid 1960’s).  Who knows the side effects of those drugs that I took as a child.  You can barely find a trace of them on the internet.  In fact, one I remember clearly is not found anywhere except as a brief mention when I searched  for another medication.  Airayne.  It was a capsule that had a special inhaler that punched holes in it and then you sucked it in like today’s version of advair.

Doc said that my auto immune condition has over ridden the asthma.  That made me think back to my childhood.  Maybe all those “asthma” and pneumonias I had may have been an auto immune condition all along.  Yes, the asthma meds worked.  Or did they mask the real problem all these years?  It has me wondering and I will be doing more research as I go along.

I did tell the doctor about how all my rashes, itchy skin and open sores have just gone away.  My skin has never been so soft.  My allergy eyes and post nasal drip have completely gone.  He did say that I still have crackles in my lungs.  That is the scar tissue.  He said the skin clearing up is the cellcept working.

I am also grounding.  He didn’t quite know what to say to that.  He said he had no information, but did put it in my chart.  It is supposed to help with inflammation.  I am sure it is helping the medication to do its job more effectively.

I mentioned about my hip hurting again as I reduced the prednisone last week.  He said for me to continue to track what symptoms return as the steroid is reduced over the next 12 weeks.  If anything unusual happens, to please email him.  I also said that I was not as slimy as before.  He gave me a questioned look.  I told him that the post nasal drip has stopped, I wasn’t coughing up clear goo anymore and that overall I felt less slimy.  He attributed that to the cellcept also.

So, Even though I have over $300 in doctor visits and several sets of trips to the vampire (Quest) over the next several weeks (and months).  Not sure if insurance will cover sleep test or bone density test, it is okay.  Somehow God will make sure it gets all done, the money will be there, and I will be moving forward to being more comfortable.

I did complain that the exhaustion factor has not really changed.  He said that since I have gone so long with minimal exercise, it will be while before I regain my strength.  He said that depending upon the lab results in June, he will refer me to pulmonary rehab to help with it.  In the mean time, keep walking the dog.

Personally, I think it is God blessing me.  Yes, He is using medicine as a tool.  I know that I have team of women, men and leaders praying for me on a regular basis for health and endurance.   Things all turned around when a group of godly men gathered around me at church and prayed sincere fervent prayers for me and my family in February.

There are still bad days.  But now the hope I had in my heart is being felt as hopefulness.  I look forward tomorrow’s promise of a new day.  May it be a great day.

 

 

Two Week Update

It has been a little over two weeks since starting the cellcept and the prednisone.  I have seen another doctor and wow, did he inform me of a lot.  It has been over 11 days since my fingers have turned blue.  Amazing how something like that I can count.  I just never really understood how bad I had gotten.

But, getting back to the medical stuff….Endocrinologist who has been treating me for GERD and fatigue was glad to hear I am no longer terminal.  He sort of agreed with the treatment plan, but was extremely concerned with the amount of steroids I am on.  I informed him that the doctor was going to wean me off at my next visit.  I explained to him about some of the side affects I am experiencing.  He stated it was normal with the prednisone.  But, he did recommend some tricks to override the stimulation of it so I can sleep.  He is trying to get the insurance to pay for a baseline bone density test since heavy use of steroids causes osteoporosis.  Let’s see if that happens.  Also, he upped my GERD medicine since it isn’t making it through the night anymore because of the steroids.  I am okay with that.  The B-12 will remain the same.  My depletion will not get better with steroids or without.  So be it.

In the mean time, he stated that he cellcept will induce menopause.  I was on the way there anyway with reduced oxygen.  So, he wants to watch my calcium even more closely.  We discussed that since I have GERD I am unable to take the pill form.  I have a calcium powder that I may start sprinkling on my food instead.  He said that way is less intrusive to my stomach and will help fight the osteoporosis with the steroids.  I am going to wait for next week’s labs to see what the results are.  I am trying to eat a yogurt every other day for the probiotics and calcium.

I know – eat my greens. They have it also.

Overall.  I am feeling so much better.  The hard part is trying to balance out what I used to do, with what I can do and what I want to do.  I keep over doing it on Saturday because I feel so good.  Then I end up exhausted on Sunday and Monday.   So, on Saturdays I am allotting 10 minutes for one chore.  Whatever that may be (sweeping, mopping, scrubbing tub, etc.).  After that, no more.  Still walk Daisy on Saturday morning the 5 block trip we do.  I am not ready to expand the walk yet.  I am still a little winded after the 5 blocks.  But, I have been able to up her walks during the week by two-three times.  She is happy about that.

I have a lot of labs and doctor visits next week.  Along with some fun planned with Groupons for Spring Break.  My college work won’t stop.  But, I can at least have a small outing each day to be with a friend.  Follow-up after Easter.

He is RISEN.