Oh, that light at the end of the tunnel that everyone keeps talking about....
I feel like the light is at a new bend in the tunnel to lead me in yet another direction with all my illnesses. It's always one thing after another, and another, and another. My diseases are progressing, rather than being slowed down by the medications. It's all happening at such an alarming rate. There are so many more things I have to give up doing just to have the energy to be awake. Otherwise, I'd just be a schlub who was always in bed. There are times that I will stay in bed for 1-2 days at a time while I'm sick and cannot do much else but sleep to help my body get over whatever it's going through.
I'm hoping that everything does slow down soon. After going downhill at this fast a rate, I just feel like I'm going to slam into a brick wall when I get to the bottom. It's been over 2 years since I started getting sick, and I just feel like I have to give up something new every single day. I haven't been able to crochet in about 8 months, and that is one of my favorite hobbies; but my hands don't want to work for me. Typing is incredibly difficult, but it's my means of communication with all the online friends I have, and then texting to my family and friends also.
I just hope that that little light I see in the tunnel now; is the end of the tunnel, and I can get out of all this darkness, pain, loneliness, disappointment; and start living again...to feel better, to slowly get things back one at a time. To be able to do the laundry again, and to cook dinner for my wonderful fiancee. I told him I didn't want to get married until I felt better, because I want to enjoy my wedding day, and not be riddled with pain from it.
So, this little light of mine, I'm gonna let it shine. this little light of mine, I'm gonna let it shine, let it shine, let it shine, let it shine!
Ahhh, life with Chronic Illness & Pain... I thank God every day for the great network of family and friends who support me through this. Lupus may try to bend me; but it will never break me! Fighting my way through AutoImmune hell w/ MCTD, Psoriatic Arthritis, Fibromyalgia, Chronic Fatigue, Anxiety, Depression, and that rapidly evolving 'Lupus-like' Bully that is trying to ruin my life. Follow me if you dare down the weird and twisted journey of living with chronic pain...
Sunday, February 19, 2012
Sunday, February 12, 2012
Missing my "A" game
Yes, I was always the "A" personality. I was very organized, very outgoing, helped anyone that needed it, was always the Queen of Optimism, had a smile for eveyone, helped the old lady cross the street, volunteered for a short while before my life got extra busy. But, I always had time for family & friends.
That all changed when I fell ill back in December 2009. I was fatigued and achy, with sore joints and started missing time at work. I was blessed in that my employers adjusted my schedule to a part-time position when I started missing weeks at a time. We came to an agreement that I would be able to keep my job if I had a doctor's note to cover all of my absences. I want to share with all of you how much time I was missing from work.
Saturday 1/2/10 - OFF SICK - scheduled 800am - 100pm
Received notice from Management that any/all absences will now require a doctor's note
Saturday 1/16/10 - OFF SICK - scheduled 800am - 100pm
Monday 1/18/10 - OFF SICK - scheduled 1200pm - 800pm
PCP doctor's appointment at 130pm - Doctor's Note was given to management
Wednesday 1/27/10 - WORKER'S COMP CLAIM
Goldendoodle jumped at my face, knocking my jaw out and it made a horrible cracking sound. Work sent me to FMH Immediate Care for initial evaluation. They sent me to FMH Rosehill for Jaw scans
ALL OF THIS WAS OFF THE CLOCK, AND NO PAYMENT WAS MADE FOR TIME LOST, EVEN THOUGH THEY SENT ME TO IMMEDIATE CARE TO BE CHECKED OUT.
Thursday 1/28/10 - OFF SICK - scheduled 730am - 600pm
Doctor faxed note to employer
Friday 1/29/10 - scheduled 1200pm - 800pm
Was still feeling violently ill. I let management know that I was calling my doctor for care instructions.
Doctor faxed note to employer stating that I shouldn't even just be home sick, I should be in the Emergency Room - and most definitely NOT at work. Management obliged an hour after receiving the faxed letter.
Employer requested release of information from my doctor's office. I refused to release medical records per my HIPPA protection.
I went to the Emergency Room - and they said that I needed to be at home today and Saturday 1/30/10
Saturday 1/30/10 - OFF SICK - scheduled 800am - 100pm (Management knew day before)
Emergency Room doctor's note was given to employer
Monday 2/1/10 OFF SICK - scheduled 730am - 400pm
GI doctor's appointment at 130pm - Dr said off work until issue resolves. If not resolved by 2/5/10, upper endoscopy will have to be done on Thursday 2/11/10
GI doctor's note given to employer
Tuesday 2/2/10 - SCHEDULED OFF - Phone update to Management - they advised me that my hours have been cut to part-time due to my excessive absences.
Wednesday 2/3/10 - OFF SICK PER DR ORDERS - scheduled 1200pm - 800pm
Thursday 2/4/10 (MY BIRTHDAY) - OFF SICK PER DR ORDERS - scheduled 730am - 600pm
Friday 2/5/10 - scheduled 730am - 1200pm
GI Dr had already faxed note for absences 2/3-2/4/10
Thursday 2/25/10 - OFF SICK - scheduled 730am - 600pm
PCP doctor's note given to employer
Monday 3/8/10 OFF SICK can barely move...pain throughout body - scheduled 300pm - 800pm
PCP doctor's note will be supplied
Tuesday 3/9/10 - OFF SICK - scheduled 730am - 1200pm
PCP doctor appointment at 230pm. Doctor wrote note that I had to be off work 3/8-3/15/10, expected return to work on 3/17/10
Called employer to advise them of doctor's orders. Owner and manager made conference call to me stating that we will need to have a meeting upon my return to work.
Wednesday 3/10/10 - scheduled off
Thursday 3/11/10 - OFF SICK per DR ORDERS - scheduled 730am - 600pm
Friday 3/12/10 - OFF SICK per DR ORDERS - scheduled 730am - 130pm
Saturday 3/13/10 - scheduled off
Monday 3/15/10 - OFF SICK per DR ORDERS - scheduled 730am - 130pm
Rheumatologist appointment at 1000am - Dr note given to employer along with note covering 3/8-3/15/10
Tuesday 3/16/10 - scheduled off
Wednesday 3/17/10 - Employers required a work release from PCP including restrictions.
PCP faxed letter 3/18/10 stating that any restrictions must come from the rheumatologist
Rheumatologist said there were no restrictions upon return to work.
Wednesday 3/24/10 - TO EMERGENCY ROOM, can barely move - scheduled 730am - 130pm
Spoke to management that ER doctor wants me out of work until Sunday. I can return to work Monday 3/29/10
Tuesday 3/30/10 at psychiatrist appointment - updated to management
decrease in Lexapro to 20mg SID(qD)
added Abilify 5mg 1 PO SID(qD)
added Cyproheptedine 4mg SID(qD) bedtime
Wednesday 3/31/10 - 1200pm Called out for a Mental Health Day - scheduled 200pm-800pm
Told Receptionist I had no appointments, I had a breakdown finally after all that has happened in the the past ~3 months. I advised them to make sure management knew my phone would be turned off for the entire day.
Monday 4/5/10 - OFF SICK, bad pain and decreased mobility - scheduled 730am - 400pm
Tuesday 4/6/10 - Rheumatologist Dr appointment
added Celebrex 200mg 1 PO SID(qD) with food
Note from Dr to return to work with no restrictions (yet)
Stopped tracking my days off because my employer saw my paperwork in my bag and went through it and wrote me another notice for excessive absences. Below are the other copies of most of the dr appt notes I had before getting fired from my job
4/15/10 - Rheumatologist Dr note covering 4/14-4/16/10
4/22/10 - Physical Therapist note covering today
4/28/10 - Rheumatologist Dr note covering 4/27-4/28/10
4/29/10 - Rheumatologist Dr note covering today
4/30/10 - Emergency Room Dr note covering 4/30-5/2/10
5/4/10 - PCP Dr note covering 5/4-5/5/10
5/18/10 - Rheumatologist Dr note covering 5/15-5/18/10
5/25/10 - Owners and Management made me sign a release that I would not carry anything up or down the stairs and would not help take items to clients vehicles.
6/3/10 - PC Dr note covering 6/2-6/4/10, can return to work on 6/5/10
6/7/10 - scheduled 200pm-800pm. I started my new pain management medication and muscle relaxers and took a nap at 8am after having an early breakfast. I never heard my alarm go off. I never heard my phone ring when work tried to call me. I awoke at 5pm and immediately called work. I asked them if they still needed me in to help, and they said yes. I told them I would be there in approximately 30 minutes.
When things settled down at closing, I spoke with the manager and told her how very sorry I was about oversleeping and let her know that she knew I was changing medications again, and that I would try harder to make it in more. She said ok, you're doing all you possibly can
6/8/10 - scheduled 730am - 130pm
at 130pm, I was called into the owners office with manager and assistant manager as well. I was told that since I did not call before my shift started on 6/7/10, I was being terminated effective immediately.
That all changed when I fell ill back in December 2009. I was fatigued and achy, with sore joints and started missing time at work. I was blessed in that my employers adjusted my schedule to a part-time position when I started missing weeks at a time. We came to an agreement that I would be able to keep my job if I had a doctor's note to cover all of my absences. I want to share with all of you how much time I was missing from work.
Saturday 1/2/10 - OFF SICK - scheduled 800am - 100pm
Received notice from Management that any/all absences will now require a doctor's note
Saturday 1/16/10 - OFF SICK - scheduled 800am - 100pm
Monday 1/18/10 - OFF SICK - scheduled 1200pm - 800pm
PCP doctor's appointment at 130pm - Doctor's Note was given to management
Wednesday 1/27/10 - WORKER'S COMP CLAIM
Goldendoodle jumped at my face, knocking my jaw out and it made a horrible cracking sound. Work sent me to FMH Immediate Care for initial evaluation. They sent me to FMH Rosehill for Jaw scans
ALL OF THIS WAS OFF THE CLOCK, AND NO PAYMENT WAS MADE FOR TIME LOST, EVEN THOUGH THEY SENT ME TO IMMEDIATE CARE TO BE CHECKED OUT.
Thursday 1/28/10 - OFF SICK - scheduled 730am - 600pm
Doctor faxed note to employer
Friday 1/29/10 - scheduled 1200pm - 800pm
Was still feeling violently ill. I let management know that I was calling my doctor for care instructions.
Doctor faxed note to employer stating that I shouldn't even just be home sick, I should be in the Emergency Room - and most definitely NOT at work. Management obliged an hour after receiving the faxed letter.
Employer requested release of information from my doctor's office. I refused to release medical records per my HIPPA protection.
I went to the Emergency Room - and they said that I needed to be at home today and Saturday 1/30/10
Saturday 1/30/10 - OFF SICK - scheduled 800am - 100pm (Management knew day before)
Emergency Room doctor's note was given to employer
Monday 2/1/10 OFF SICK - scheduled 730am - 400pm
GI doctor's appointment at 130pm - Dr said off work until issue resolves. If not resolved by 2/5/10, upper endoscopy will have to be done on Thursday 2/11/10
GI doctor's note given to employer
Tuesday 2/2/10 - SCHEDULED OFF - Phone update to Management - they advised me that my hours have been cut to part-time due to my excessive absences.
Wednesday 2/3/10 - OFF SICK PER DR ORDERS - scheduled 1200pm - 800pm
Thursday 2/4/10 (MY BIRTHDAY) - OFF SICK PER DR ORDERS - scheduled 730am - 600pm
Friday 2/5/10 - scheduled 730am - 1200pm
GI Dr had already faxed note for absences 2/3-2/4/10
Thursday 2/25/10 - OFF SICK - scheduled 730am - 600pm
PCP doctor's note given to employer
Monday 3/8/10 OFF SICK can barely move...pain throughout body - scheduled 300pm - 800pm
PCP doctor's note will be supplied
Tuesday 3/9/10 - OFF SICK - scheduled 730am - 1200pm
PCP doctor appointment at 230pm. Doctor wrote note that I had to be off work 3/8-3/15/10, expected return to work on 3/17/10
Called employer to advise them of doctor's orders. Owner and manager made conference call to me stating that we will need to have a meeting upon my return to work.
Wednesday 3/10/10 - scheduled off
Thursday 3/11/10 - OFF SICK per DR ORDERS - scheduled 730am - 600pm
Friday 3/12/10 - OFF SICK per DR ORDERS - scheduled 730am - 130pm
Saturday 3/13/10 - scheduled off
Monday 3/15/10 - OFF SICK per DR ORDERS - scheduled 730am - 130pm
Rheumatologist appointment at 1000am - Dr note given to employer along with note covering 3/8-3/15/10
Tuesday 3/16/10 - scheduled off
Wednesday 3/17/10 - Employers required a work release from PCP including restrictions.
PCP faxed letter 3/18/10 stating that any restrictions must come from the rheumatologist
Rheumatologist said there were no restrictions upon return to work.
Wednesday 3/24/10 - TO EMERGENCY ROOM, can barely move - scheduled 730am - 130pm
Spoke to management that ER doctor wants me out of work until Sunday. I can return to work Monday 3/29/10
Tuesday 3/30/10 at psychiatrist appointment - updated to management
decrease in Lexapro to 20mg SID(qD)
added Abilify 5mg 1 PO SID(qD)
added Cyproheptedine 4mg SID(qD) bedtime
Wednesday 3/31/10 - 1200pm Called out for a Mental Health Day - scheduled 200pm-800pm
Told Receptionist I had no appointments, I had a breakdown finally after all that has happened in the the past ~3 months. I advised them to make sure management knew my phone would be turned off for the entire day.
Monday 4/5/10 - OFF SICK, bad pain and decreased mobility - scheduled 730am - 400pm
Tuesday 4/6/10 - Rheumatologist Dr appointment
added Celebrex 200mg 1 PO SID(qD) with food
Note from Dr to return to work with no restrictions (yet)
Stopped tracking my days off because my employer saw my paperwork in my bag and went through it and wrote me another notice for excessive absences. Below are the other copies of most of the dr appt notes I had before getting fired from my job
4/15/10 - Rheumatologist Dr note covering 4/14-4/16/10
4/22/10 - Physical Therapist note covering today
4/28/10 - Rheumatologist Dr note covering 4/27-4/28/10
4/29/10 - Rheumatologist Dr note covering today
4/30/10 - Emergency Room Dr note covering 4/30-5/2/10
5/4/10 - PCP Dr note covering 5/4-5/5/10
5/18/10 - Rheumatologist Dr note covering 5/15-5/18/10
5/25/10 - Owners and Management made me sign a release that I would not carry anything up or down the stairs and would not help take items to clients vehicles.
6/3/10 - PC Dr note covering 6/2-6/4/10, can return to work on 6/5/10
6/7/10 - scheduled 200pm-800pm. I started my new pain management medication and muscle relaxers and took a nap at 8am after having an early breakfast. I never heard my alarm go off. I never heard my phone ring when work tried to call me. I awoke at 5pm and immediately called work. I asked them if they still needed me in to help, and they said yes. I told them I would be there in approximately 30 minutes.
When things settled down at closing, I spoke with the manager and told her how very sorry I was about oversleeping and let her know that she knew I was changing medications again, and that I would try harder to make it in more. She said ok, you're doing all you possibly can
6/8/10 - scheduled 730am - 130pm
at 130pm, I was called into the owners office with manager and assistant manager as well. I was told that since I did not call before my shift started on 6/7/10, I was being terminated effective immediately.
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