5 years already?

So, February 21st marked 5 years since I lost my beloved second daddy, Bill Stroupe. It was sudden and completely unexpected. When I got the call, I thought it was Hospice in Harrisburg, PA calling me to tell me that my daddy had passed away peacefully.
Billy and his wife Ina (my second mommy) were a huge part of my life growing up. They lived across the street and couldn't have children of their own; so they kinda adopted me as their own. I went on vacations with Ina, spent the night with her all the time. Our bus stop was right in front of her fence gate. She knew that I skipped breakfast a lot and would forget to pack my lunch because it took so long for me to get up and motivated for school. So, most mornings she would have a breakfast "to go" ready for me and a brown bag lunch with all kinds of yummy healthy food. Billy was a coin collector who owned his own gas station and garage. Ina was a nurse at the Emergency Room. She mainly worked night shifts. I remember going over each afternoon and watching her undo all those clips in her hair just to do an updo and spray the living daylights out of it with aerosol hairspray. And she never left the house without looking damned good from head to toe. Billy could care less...he was always in his garage clothes, unless it was a holiday. After my family's holiday dinner, I would always run over to spend time with my precious set of second parents that I treasured; and was so blessed to have. I could go on an on forever about my second set of parents. They were such wonderful people; and I know that they are both some of my most fiercest protective angels.
Well, the day before Billy died he had his cardio pulmonary check-up and all was tip-top shape. Billy only had one lung, and the other functioned minimally. He had black lung. Well, at about 3am, he had an asthma attack (which was typical) and his aorta exploded before he could ever even reach his inhaler.
So, like I said when I got the call, I thought it was about my dad who was in Hospice Care in PA taking his last breaths. So, I left work early because I was way too shaken up to be of much use anyway. I went to my then boyfriend's house (he's an ex now). I decided that I would spend the night in the den downstairs to feel safe and close to someone I loved.
I awoke very early the next morning on February 22nd in a panic and just burst into tears. It wasn't but a few hours later, my sister called to say that my daddy had passed away early in the morning (about the time I awoke in a panic).
My daddy will always be in my heart and life. I was always daddy's little shadow growing up. After the divorce, he got us every Sunday. After a while, my two sisters stopped going with him on Sundays. They saw him as the devil. I never did, nor will I ever understand how in the world they could think that just by what other people said. Daddy didn't do gifts or holidays, but he gave me love and life lessons. And that's way more than the latest cool shoes could have done for me. By the time I was ready to graduate High School, it was evident that my daddy's health had worsened and the emphysema had set in pretty hard. He was too sick to even make it to my graduation ceremony. But, as time passed we got closer and closer. His illnesses brought me to understand what compassion and family are truly about. Especially after my oldest sister passed away. (That's a story for another time).

It's just been a rough couple weeks...I sit here and laugh myself into tears, and cry myself into laughter over all the memories I have of the wonderful men that I was blessed to have as my daddies.

This little light of mine

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!

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.

Happy 2012!!!

I cant believe how time flies even when you are home bound and living thru hell with a chronic illness, chronic pain and chronic fatigue.
I welcomed the New Year with open arms...I needed another new and fresh start to hopefully start making headway with all these stupid and aggravating health problems. In December I had a breast tumor removed, and next Friday I am scheduled to have most of my cevix removed.
I have had to go through iv infusions at the Rheumatologist's office, and she wants to see if my insurance will cover Humira at home injections. My first one was this past Tuesday, and now it is all on hold. My Rheumy had given me two sample injections to get me thru the month until she gets the approval from my insurance company. But, now with the uncertainty of cervical cancer, I have to put off doing another Humira injection until the pathology report comes back after my surgery. The Rheumy is also still working on getting my Celebrex approved thru the insurance company without having to go thru all the pre-requisite drugs that would mess up my stomach way worse. So, my GI doctor had to send my medical history, and the endoscopy findings to my rheumy so she can use my stomach conditions as grounds to skip all the pre req drugs.
It really does feel like a cha cha for my health. One step forward, one or two steps back.

January 16th
Finished two week round of Ceftin antibiotics, with a ten day round of cough suppressants and now I have a lovely inhaler since my PCP says I may be asthmatic.

January 23rd
Express Care for trouble breathing, swollen & sore throat, with chest congestion and severe cough. Possibly asthmatic, and I now have bronchitis! So, I start my 5 day stint of Z-pack antiobiotics, and continue use of my inhaler. I have to pick up Cloraseptic spray to numb my throat, and also get Sucrets numbing throat lozenges. Fun, fun...

January 25th
My wonderful Physician's Assistant that I see at the Pain Management Clinic finally got my fentanyl patches approved! Woo-Hoo! But, I have to wait until after my surgery Friday to start using them. I just stopped Prednisone, today will be my last day of Percocet since she is swapping that for Oxycodone (basically its percocet without tylenol), tomorrow is the last day for my antiobiotics. Friday is surgery, and then will be my very last day of using oral Morohine sulfates.

January 27th
Surgery....having a LEEP (Laser excision process) procedure for my cervix removal. Nurses drugged me up pre-op with fentanyl and anti-ametics, then switched me from sedation to general anesthesia because of my pain levels. After surgery, I was given many doses of Delaudid, Fentanyl, oral percocet, and iv Benedryl.

January 29th
Last night at our friend's house, I went to take a pee break, and ended up with a fainting/dizzy spell that ended up with me banging my head into the ledge of the bathroom sink very hard. I had trouble with my vision for quite some time, and could not walk on my own. My knees kept wanting to give out on me. We opted to come home rather than go to the ER bc I hate that fricking ER (I teased that they would probably have xray'd my foot and sent me home with a clean bill of health). But I hit my right hip pretty hard on the edge of the toilet. After finally settling into bed last night and getting some rest, I awoke to such severe pain in my left hip (which is my bad one). This pain was more severe than it has ever been in that hip....even after I was struck in that hip by a vehicle as I was walking through a parking lot.
Today is the first day in the two years that Ive been with Sonny that Ive asked him to stay home with me. And since he is the manager, he had to go in to work. He could not find a single person willing to cover the shift for him; even knowing the situation.
Im so frustrated because its a major frustration on him also. He's getting worn down by all the added stress that my health problems are causing us both, and I cant blame him For being frustrated. Im just so messed up mentally right now by not knowing what to do or say. Im more than a little lost today :-(

Setbacks aren't always a bad thing

So, I just keep trying to keep positive about all the crap I've had to deal with since getting sick. All the "two steps forward, ten steps back" shit is really getting old though. But, in getting setback my doctors can better help me move forward eventually. I just have to keep optimistic about all this.
It's not easy to be my old optimistic self lately though. Through the constant vomiting, and then the vomiting blood; the chronic aches and pains; and especially the fatigue that is far worse than it ever was before.
I've been pushing myself harder and harder to accomplish things throughout my day, instead of staying in bed like my body wants me to. I may end up paying for it in the end, but at least I have something to show for it!!

So, I bathe even when I really don't have the energy for it; I do laundry once a week; I attempt to make the bed every day; I stay on the couch instead of in bed most days; and I'm crocheting a new blanket for the bed. All this plus spending time with an energetic nine year old!! I'm trying to do all I can, and although it's killing me; its also very worthwhile in the end. It helps boost my self esteem back up almost to where it was before. I don't feel like such a worthless schlub every day.

It's been a while

It's been quite some time since I've been on here to let you know how things are going. It's been a busy and crazy summer so far.
Clay had a trip to the ER and we found out he had mono. This was literally days before he left for a 3 week camping adventure in upstate New York...so I was frantic and worried.
And joy of joys, Sonny proposed to me on the 22nd at 12:15am. I was caught completely off-guard (which is hard to do to me). I'm so blessed to have such a wonderful fiancee!!!! He's the best! I love him ever so muchly!!!
I finally found out that I do not have Lupus (yet). That's right, yet. It's an Undifferentiated Connective Tissue Disease. My rheumy is so nice!! My pain management doctor is a jackass at times though. He ended up putting me on morphine sulfate, and the dosage he prescribed was actually enough to land me in the ER for an overdose. Yup, had to miss Sonny and my Harley riding & camping weekend to stay home sick. But, we figured out what dose I can safely take and not end up sick or o/d again.
Oh, and that weekend I stayed home sick and went to the ER??!! Well, that's the weekend I spent babying our 16yr old cat after the $400 vet visit from her episode of constipation.
Then the nightmare of all nightmares - cleaning Clay's disaster area that is actually his bedroom. Man, this was seriously the worst project to undertake while I'm going through so much physically and emotionally. But, we're making head-way and we actually found the floor in his room last evening!! How pathetic is that??!!
Tonight we get Clay back. I'm so excited to see him!!

Like I said, it's been a busy and crazy summer.

Vanity or Sanity

Ahhh, the little things that make us feel a little more human. You know what I'm talking about... The manicure you get at the salon because you can no longer do your own fingernails, or putting on make-up on the first day you've felt half-way decent in weeks. That cute shirt you bought on impulse at the clearance rack, but you know that it will cheer you up and make you feel special (and pretty) every time you wear it.

I truly have always treasured the little things in life, but I appreciate them so much more now than I ever did before. The love I see in Sonny's eyes when he looks at me....ahhhhhhh, it melts me and makes my heart skip a beat. And, I try my best to remember that beauty is in the eye of the beholder. The scars on the outside, those are just inconvenient at best. Remembering to love myself with my illness and flaws is a daily struggle. Would I rather be healthy and pretty? Sure, who wouldn't want to be both of those! But, being the most amazing ME is way better.

I'm sitting here typing, deleting, re-typing and deleting more and more... I can't believe that my brain fog has gotten so much worse that I find myself unable to complete thoughts without difficulty. I struggle to make the words come together and make sense, but they're often jumbled or stuck on the tip of my tongue. I had an amazing rant going on for this piece on Vanity v Sanity; and now none of it is readily available.

Well, maybe I'll be able to post more later if the fog is lifted a little (or hopefully a lot).

*hugs and spoons to you all*