Had my EEG at the hospital this morning and had the absolute most wonderful nurse/technician!
Since I can't drive, I've been out of my migraine onset pills. So I've been smoking as little as possible (it's so hard to find any lately, and my previous herbalist died) and my nurse, Laura and I chatted about my health issues, and I made her laugh a lot. She knew I was headed into a migraine as I arrived, and was empathetic to it since she is a fellow migraine sufferer. She made me laugh a good bit, as she was hooking up all those leads to my scalp and ears. She commented that with all my hair, it's amazing that the scalp leads went on fine, but she was having issues with the ones staying on my ears. I dared her to shave the peach fuzz on my lobes, since it wouldn't grow back horribly thick, and not many people can say they've had their ear lobe shaved. She lost it.
She said, "You see the optimism in everything, don't you?," and I replied, "There is always a silver lining, if you're willing to look for it." She talked about how it must be tough to go through so much and still be such a delight to be around. I told her that there are days I cannot be around anyone because it would be harmful to their health lol.
Near the end, I said, "You're my hero today, Laura!," and she replied, "You're my favorite patient EVER, Amanda!"
I asked her for a hug after the horrible test was over, and she had walked me to my awaiting hubby; to which she happily obliged.
#NursesROCK
Thursday, August 18, 2016
Wednesday, August 17, 2016
The Scary Two Weeks I've Had...
on Thursday, 8/4/16, I had my very first round of Botox injections for my chronic migraines.
on Tuesday, 8/9/16, I had a seizure-like episode, and am so lucky that my friend was there with me
Per my Neurologist, it isn't urgent but I need to see the PA this week. The schedules didn't mesh until Friday, 8/12/16
before my appt on 8/12/16, while in the lobby at the gift stand, I had another mini episode.
at my appt on 8/12/16, I met my PA for the Neurologist's office. She kept making comments and insinuations that I should've seen the ER dr bc this was/should've been considered urgent. yet all she did was write orders for EEG, bloodwork, and a brain MRI with and without contrast. the front office staff scheduled the EEG at the hospital for 8/18/16, since my husband is off work that day - bc my dr said no driving until she or the other dr release me to drive after all these tests. So either way, I know I'm not driving for at least a week since the EEG was scheduled for the following Thursday, 8/16/16. I had questions for the MRI, so Advanced Radiology scheduled me for the following Friday at 11am, although she was having issues with the insurance company, so she said the appt may need changed or canceled.
Tomorrow is my EEG and I have to make sure I have clean, dry hair with no products or gels. AND NO CAFFEINE for 24 hours prior to the test. They obviously don't know what type of morning monster they'll have on their hands. First step to see if it is seizures I am having, or to see what exactly has been going on.
on Tuesday, 8/9/16, I had a seizure-like episode, and am so lucky that my friend was there with me
Per my Neurologist, it isn't urgent but I need to see the PA this week. The schedules didn't mesh until Friday, 8/12/16
before my appt on 8/12/16, while in the lobby at the gift stand, I had another mini episode.
at my appt on 8/12/16, I met my PA for the Neurologist's office. She kept making comments and insinuations that I should've seen the ER dr bc this was/should've been considered urgent. yet all she did was write orders for EEG, bloodwork, and a brain MRI with and without contrast. the front office staff scheduled the EEG at the hospital for 8/18/16, since my husband is off work that day - bc my dr said no driving until she or the other dr release me to drive after all these tests. So either way, I know I'm not driving for at least a week since the EEG was scheduled for the following Thursday, 8/16/16. I had questions for the MRI, so Advanced Radiology scheduled me for the following Friday at 11am, although she was having issues with the insurance company, so she said the appt may need changed or canceled.
Tomorrow is my EEG and I have to make sure I have clean, dry hair with no products or gels. AND NO CAFFEINE for 24 hours prior to the test. They obviously don't know what type of morning monster they'll have on their hands. First step to see if it is seizures I am having, or to see what exactly has been going on.
Inspiration on my Wellness Journey
When a spoonie bestie sends you inspiration right when you need it.
*name changed to protect a fellow spoonie
"Hi Baby Girl! I am so sorry to hear you feel so damn crappy. You are so strong and I'm not just saying that because of these migraines. You are so eager to help people, even when you feel the crappiest of crappy. Rose gets the Botox injections. She says they do 36 injections at one time without any lidocaine or other local anesthetic. Did I tell you Rose and I are going to start walking 3 to 4 times a week? Well, bless her heart, we went to the park on Monday and took a little walk. Neither of us move very quickly so we took it slow. It was a beautiful morning and I FINALLY have a friend here! It's been years! Rose has tendinitis in her left ankle and it flared up on Tuesday. Well, as my luck, well I guess our luck, she had to get a cast from just below her knee all the way down to her toes!!! One short walk!!! Go figure! She has to wear it for 2 weeks! We agreed to get back to walking when she gets her cast off. I'm going to ask her to go out to lunch next week. Amanda, she is so sweet, she was feeling so alone. So, I followed in your footsteps. You reached out to me and I finally got the chance to reach out to someone and let them know they are not alone.
I must tell you, I am fearing for your health. I know my job as your friend, is to be positive and reassure you, but I love you and I really am scared of what is happening to you. You, for all intents and purposes, you ARE my best friend. I wish you lived here. I would make you put your Jammie's on, tuck you in (my bed is huge! It sleeps 3 comfortably!). I would make sure you you have plenty of M&Ms and your favorite beverage. I will cook for you and be here for whatever you need. The catch? We will use this time for YOU! I think you need some big time just for you. But you're no where near and I have the peace of mind just knowing you have Sonny and Clay. If you can't answer right now, don't worry. Please keep me updated on what's happening with you. I love you dearly, my sweet and loving sister💕"
And yes, this is from one of the spoonie besties I have.
I am so blessed to have found real friends on this journey.
WYSIWYG - What You See Is What You Get. Unless you have invisible illnesses.
*name changed to protect a fellow spoonie
"Hi Baby Girl! I am so sorry to hear you feel so damn crappy. You are so strong and I'm not just saying that because of these migraines. You are so eager to help people, even when you feel the crappiest of crappy. Rose gets the Botox injections. She says they do 36 injections at one time without any lidocaine or other local anesthetic. Did I tell you Rose and I are going to start walking 3 to 4 times a week? Well, bless her heart, we went to the park on Monday and took a little walk. Neither of us move very quickly so we took it slow. It was a beautiful morning and I FINALLY have a friend here! It's been years! Rose has tendinitis in her left ankle and it flared up on Tuesday. Well, as my luck, well I guess our luck, she had to get a cast from just below her knee all the way down to her toes!!! One short walk!!! Go figure! She has to wear it for 2 weeks! We agreed to get back to walking when she gets her cast off. I'm going to ask her to go out to lunch next week. Amanda, she is so sweet, she was feeling so alone. So, I followed in your footsteps. You reached out to me and I finally got the chance to reach out to someone and let them know they are not alone.
I must tell you, I am fearing for your health. I know my job as your friend, is to be positive and reassure you, but I love you and I really am scared of what is happening to you. You, for all intents and purposes, you ARE my best friend. I wish you lived here. I would make you put your Jammie's on, tuck you in (my bed is huge! It sleeps 3 comfortably!). I would make sure you you have plenty of M&Ms and your favorite beverage. I will cook for you and be here for whatever you need. The catch? We will use this time for YOU! I think you need some big time just for you. But you're no where near and I have the peace of mind just knowing you have Sonny and Clay. If you can't answer right now, don't worry. Please keep me updated on what's happening with you. I love you dearly, my sweet and loving sister💕"
And yes, this is from one of the spoonie besties I have.
I am so blessed to have found real friends on this journey.
WYSIWYG - What You See Is What You Get. Unless you have invisible illnesses.
Thursday, March 24, 2016
ISO Barge Fog Horn
My brain fog has been so thick lately. I forget things as soon as I've said them. I need notes for my notes apparently, because I've even begun to forget to take my notebook with me to dr appts (important ones!), and trying to remember all that was said is very exhausting when the fog is there 24/7, and never lets up completely...but is mostly thick enough to cut with a butter knife!
I wish there were a pill for brain fog. Unfortunately, I'm on too many medications and in order to avoid interactions is to keep it the way it is and not add 5 more meds.
How do you deal with Brain/Fibro Fog? Do you have a reminder system in place? and perhaps a backup?
I miss my exits, have to circle the city a couple times bc I'm running errands the very long way, rather than in an order that flows well for locations. I forget things as soon as I open my mouth to speak at times.
And trying to remember something long enough to get out my notepad to write it down? Pfft, forget about that happening 87% of the time!!
Rest well, Spoonies! Happy Spring, and remember to listen to your bodies. It will tell you what it wants/needs....if you only tune in. Gentle Hugs & lots of prayers
I wish there were a pill for brain fog. Unfortunately, I'm on too many medications and in order to avoid interactions is to keep it the way it is and not add 5 more meds.
How do you deal with Brain/Fibro Fog? Do you have a reminder system in place? and perhaps a backup?
I miss my exits, have to circle the city a couple times bc I'm running errands the very long way, rather than in an order that flows well for locations. I forget things as soon as I open my mouth to speak at times.
And trying to remember something long enough to get out my notepad to write it down? Pfft, forget about that happening 87% of the time!!
Rest well, Spoonies! Happy Spring, and remember to listen to your bodies. It will tell you what it wants/needs....if you only tune in. Gentle Hugs & lots of prayers
Monday, February 8, 2016
What rest? What sleep?
I am so absolutely horrible with my sleep schedule. And as soon as I get it back on track, running like a well timed clock; something happens and the wrench gets thrown into the cogs.
Do you know that feeling? Do you know the guilt over missing fun stuff with friends? Amen; I hear you saying 'yes' out there in the world.
Living a Chronic Life wasn't in my life plan. But I still just keep trusting that God knows my purpose here, and will show me the journey as I travel these crazy & unpredictable paths past these past six years. Then I'll finally know why, or at least what I was to learn from this before my body allows any of the treatments to start working effectively, versus minutely or not at all.
As I sign off for the night, I want you to know that you are not alone at all!! And you are amazing for going through it! Welcome warriors!! #SpooniesRock
Do you know that feeling? Do you know the guilt over missing fun stuff with friends? Amen; I hear you saying 'yes' out there in the world.
Living a Chronic Life wasn't in my life plan. But I still just keep trusting that God knows my purpose here, and will show me the journey as I travel these crazy & unpredictable paths past these past six years. Then I'll finally know why, or at least what I was to learn from this before my body allows any of the treatments to start working effectively, versus minutely or not at all.
As I sign off for the night, I want you to know that you are not alone at all!! And you are amazing for going through it! Welcome warriors!! #SpooniesRock
Sunday, January 10, 2016
Hope for what?
How many procedures or surgeries have you been through?
Do you have to keep a list of all of them with you, along with meds list, to every dr appointment?
Then, welcome to my world of hell...you have been initiated into the Spoonie club.
I had a surgery on December 21st, and am still looking at a long recovery because of all my auto-immune issues. Instead of the standard 2-6 weeks, I'm looking at 2+ months of being more exhausted than usual, and having more pain than usual.
Do you find yourself wishing you knew more people with similar issues? Have you met amazing support online for your issues? I have found some amazing friends online that I talk to all the time, and wish that I could meet & give them the gentle hug they need, from someone who understands.
So as I sit here with half of my daily water intake waiting to be finished (at 340pm), I just wonder how long it'll be until I get better all-around, not just from the surgery. I want to be able to throw the football around with my son, or even just shoot hoops with him up at the park. And he just happens to like tennis, and I miss playing tennis...this is one of my major goals. Buying us both racquets & a tube of tennis balls, and eventually maybe start playing tennis together.
Whatever struggle you're going through, know that there is someone out there who feels the same, or similar.
Wishing you a blessed & pain-free day!!
Sunday, November 29, 2015
Holiday Hell? Nah, that's normal...
I love the holidays, because to me it means family time. And this year, Thanksgiving fell on one of my sister's birthday. She ended up in Urgent Care with a sprained wrist. My brother-in-law fell down the stairs and is too stubborn for dr visits. Me? Oh I defied my clumsy nature for one day, it seems.
But dealing with post concussion syndrome during the holidays sucks. Ever since my bad fall on Veteran's Day, I've been screwed up in the head (worse than usual). When I hit my head, I injured my inner ears or something like that. Vertigo, faintness, double vision, blurred vision, and the horrid migraines all the time - all come and go, without warning. Well, the migraines have a warning if I hit my head again when I fall, but they still pop up other times.
And that is how I ended up falling four separate times this week. Yesterday's fall forced me to go to the ER because using my cane wasn't working, and I was barely walking well using my mother-in-law's walker. So the ER dr believes I need to go to Johns Hopkins to see a Neurologist; rather than staying on a wait list just to get a call to be scheduled at the local Neurologist's office.
These last six years have been hell. But I'm doing my best to stay positive and hope that eventually the meds & treatments will start helping, and perhaps I'll get off disability and back to working full time. God has given me more strength than I thought I ever had. Going through life til my sickness, having a rough life, prepared me for this. And I have the best husband and son in the world! I thank God every day for bringing them into my life, and my in-laws too! They are such amazing people, and I love them dearly.
Have a good Sunday evening. I'm hoping I'll be able to post a positive update soon for all of my few followers & readers out there
But dealing with post concussion syndrome during the holidays sucks. Ever since my bad fall on Veteran's Day, I've been screwed up in the head (worse than usual). When I hit my head, I injured my inner ears or something like that. Vertigo, faintness, double vision, blurred vision, and the horrid migraines all the time - all come and go, without warning. Well, the migraines have a warning if I hit my head again when I fall, but they still pop up other times.
And that is how I ended up falling four separate times this week. Yesterday's fall forced me to go to the ER because using my cane wasn't working, and I was barely walking well using my mother-in-law's walker. So the ER dr believes I need to go to Johns Hopkins to see a Neurologist; rather than staying on a wait list just to get a call to be scheduled at the local Neurologist's office.
These last six years have been hell. But I'm doing my best to stay positive and hope that eventually the meds & treatments will start helping, and perhaps I'll get off disability and back to working full time. God has given me more strength than I thought I ever had. Going through life til my sickness, having a rough life, prepared me for this. And I have the best husband and son in the world! I thank God every day for bringing them into my life, and my in-laws too! They are such amazing people, and I love them dearly.
Have a good Sunday evening. I'm hoping I'll be able to post a positive update soon for all of my few followers & readers out there
Tuesday, November 10, 2015
Would I wish this away?
When the medical bills just keep adding up, medications become more in quantity and in cost, and the amount of 'ologists' are astronomical. When you find yourself under piles of paperwork while trying hard to pretend you have a semi-normal life, it gets more daunting every single day.
The stress piles up, the anxiety shoots through the roof, and I just want to break down and cry.
But I remember that I am a muthafuckin Warrior!!
I want my old life back. I want to work a full time job, I want to be back to being active. Most of all, I just want this pain and inflammation to stop. I wouldn't wish this on my worst enemy; all these health issues that have me disabled and in daily pain. Oh no, I would never wish this on anyone.
So to top off my six year anniversary of daily pain and meds that obviously don't help, I got a special present...and now I have to have surgery the Monday before Christmas. That means I'll need to rest up a ton before that so that it's not so bad for me after the surgery. I want to be able to keep our Christmas and New Year's plans, since my husband took off work for two weeks starting my surgery day, so we have tons of quality family time this Christmas :-)
The stress piles up, the anxiety shoots through the roof, and I just want to break down and cry.
But I remember that I am a muthafuckin Warrior!!
I want my old life back. I want to work a full time job, I want to be back to being active. Most of all, I just want this pain and inflammation to stop. I wouldn't wish this on my worst enemy; all these health issues that have me disabled and in daily pain. Oh no, I would never wish this on anyone.
So to top off my six year anniversary of daily pain and meds that obviously don't help, I got a special present...and now I have to have surgery the Monday before Christmas. That means I'll need to rest up a ton before that so that it's not so bad for me after the surgery. I want to be able to keep our Christmas and New Year's plans, since my husband took off work for two weeks starting my surgery day, so we have tons of quality family time this Christmas :-)
Friday, October 23, 2015
Can we make our own luck?
Just when you are finally feeling hopeful again, after years of losing almost all hope; my body decides to throw me a curveball, or two...
Like I've said a lot in the past 6 years, 'All these one step forward & two steps back, just means that I am cha-cha-ing my way through this." I cannot give up on hope. I cannot give up on God's plan for my life. And while my body betrays me more & more, I thank God for giving me such an amazing support network.
While waiting to see what is the reason for these odd test results, and waiting to see which procedure and treatment plan are going to be given - I just have to sit & wait, very impatiently. Methinks that God has overestimated my inner strength & inner warrior somewhat. But, I still thank Him every day for all the #SilverLinings in this crazy #LupieSpoonieLife of mine.
I pray you start looking for your Silver Linings, so that you can get through whatever obstacle you are now facing. Focus on your inner warrior. Let out a war cry if you need to!! Just please don't give up and let your illnesses win. Yes, your illnesses may be holding you hostage; but there is so much to look forward to if you just hang in there, concentrate on every silver lining, no matter how small. Focus only on the positives, and you will find yourself so much more in tune with your body. Perhaps one day we'll escape our hostage situation. Until then, I'm here for you. Click on my Facebook page and friend request me, with a message saying you found me here. I can add you to the Support Group (closed/secret on fb) where you will find help, guidance, advice, and encouragement.
Wishing you a Fantastic Friday, and praying you are as well as possible
Love, hugs, prayers & spoons (lhps) to you all!!
Like I've said a lot in the past 6 years, 'All these one step forward & two steps back, just means that I am cha-cha-ing my way through this." I cannot give up on hope. I cannot give up on God's plan for my life. And while my body betrays me more & more, I thank God for giving me such an amazing support network.
While waiting to see what is the reason for these odd test results, and waiting to see which procedure and treatment plan are going to be given - I just have to sit & wait, very impatiently. Methinks that God has overestimated my inner strength & inner warrior somewhat. But, I still thank Him every day for all the #SilverLinings in this crazy #LupieSpoonieLife of mine.
I pray you start looking for your Silver Linings, so that you can get through whatever obstacle you are now facing. Focus on your inner warrior. Let out a war cry if you need to!! Just please don't give up and let your illnesses win. Yes, your illnesses may be holding you hostage; but there is so much to look forward to if you just hang in there, concentrate on every silver lining, no matter how small. Focus only on the positives, and you will find yourself so much more in tune with your body. Perhaps one day we'll escape our hostage situation. Until then, I'm here for you. Click on my Facebook page and friend request me, with a message saying you found me here. I can add you to the Support Group (closed/secret on fb) where you will find help, guidance, advice, and encouragement.
Wishing you a Fantastic Friday, and praying you are as well as possible
Love, hugs, prayers & spoons (lhps) to you all!!
Wednesday, October 21, 2015
Onward & Upward
My life in it's entirety so far, has been lackluster in luck. I have an unlimited supply of bad luck on my side. My mom always told me that if it weren't for bad luck, I'd have no luck at all. I'm a klutz, and a walking accident waiting to happen. I have a long repertoire of odd & unintentional self injuries that seemed impossible.
How does that help me? It doesn't really...but it helps me stay grounded, and sometimes it helps me stay realistic. It is so hard to think that there are people out there worse off than I am. It hurts my soul to know that no matter how much pain I'm in, someone out there is hurting even worse than I am.
Chronic illnesses & Chronic pain rule my life, and have ruled my life for six years now. 6 years of daily pain, too many symptoms to list, and a bunch of medical oddities along the way as well. But not knowing what the future holds keeps me on edge....ALL the time. I never know when something weird will pop up out of the blue (like it did last month), or how many ways my body could truly betray me when I was seriously starting to think it was beginning to play nice.
Being a chronically ill mid-30's woman, I hate that my life changed for the worse 6 years ago...But God will never give me more than I can handle...although I do think He seriously does overestimate my patience, will power and strength.
I want to know what the future holds for me. I want to know that all these meds and treatment plans are working. But as of yet, I've been in one giant flare-up for 6 years - and it just keeps getting worse. I want to see progress, feel progress within this broken body of mine. So I just bide my time until my body decides to cooperate with me...no matter how long that takes!!
How does that help me? It doesn't really...but it helps me stay grounded, and sometimes it helps me stay realistic. It is so hard to think that there are people out there worse off than I am. It hurts my soul to know that no matter how much pain I'm in, someone out there is hurting even worse than I am.
Chronic illnesses & Chronic pain rule my life, and have ruled my life for six years now. 6 years of daily pain, too many symptoms to list, and a bunch of medical oddities along the way as well. But not knowing what the future holds keeps me on edge....ALL the time. I never know when something weird will pop up out of the blue (like it did last month), or how many ways my body could truly betray me when I was seriously starting to think it was beginning to play nice.
Being a chronically ill mid-30's woman, I hate that my life changed for the worse 6 years ago...But God will never give me more than I can handle...although I do think He seriously does overestimate my patience, will power and strength.
I want to know what the future holds for me. I want to know that all these meds and treatment plans are working. But as of yet, I've been in one giant flare-up for 6 years - and it just keeps getting worse. I want to see progress, feel progress within this broken body of mine. So I just bide my time until my body decides to cooperate with me...no matter how long that takes!!
Monday, October 5, 2015
To The PAIN!
Let's take a moment to be truly real with each other about the chronic pain that is associated with many invisible illnesses.
My health issues have been a snowball rolling downhill, getting ever larger, for six years. Can you imagine having six years of unrelenting pain on a daily basis? I'm not talking about an occasional flare up. I'm talking about 24/7/365 for six full years FLARENADO that has blown up every attempt my amazing Rheumatologist has thrown at it thus far; even with me just hitting my one year mark of getting my Remicade infusion done every 4 weeks!! Still, my AutoImmune Ninjas keep hiding and recruiting/training more of my cells that my body is the enemy. And therefore it continues to attack itself. That is the type of pain I'm talking about. The pain that is in every joint, every muscle, every ligament, every tendon, and every nerve on all of my skin.
But I have some things that my AutoImmune Ninjas didn't expect. God, a great network of family & friends, and an inner warrior that is very upset with the changes.
My health issues have been a snowball rolling downhill, getting ever larger, for six years. Can you imagine having six years of unrelenting pain on a daily basis? I'm not talking about an occasional flare up. I'm talking about 24/7/365 for six full years FLARENADO that has blown up every attempt my amazing Rheumatologist has thrown at it thus far; even with me just hitting my one year mark of getting my Remicade infusion done every 4 weeks!! Still, my AutoImmune Ninjas keep hiding and recruiting/training more of my cells that my body is the enemy. And therefore it continues to attack itself. That is the type of pain I'm talking about. The pain that is in every joint, every muscle, every ligament, every tendon, and every nerve on all of my skin.
But I have some things that my AutoImmune Ninjas didn't expect. God, a great network of family & friends, and an inner warrior that is very upset with the changes.
Sunday, October 4, 2015
That Magic called Coffee
You know that magic that wakens you each morning, shortly after your body finally arranges your release from imprisonment in bed...after hours of NOT sleeping.
COFFEE; that smooth, delicious and nourishing magical potion that helps you make it through some of the day. The stuff that takes your mind off the aches, pains, and stress; if only for a short period of time.
Coffee is something to be enjoyed and celebrated. And it is celebrated by so many people. This past week, we even had a National Coffee Day!!
I used to hit the ground running early in the morning, and only need a cup or two of coffee to make it through an entire long day that was a full time job and a part time job. That was back when I was healthy.
This past six years though, coffee has merely kept me somewhat awake while my fatigued body and mind muddle through, day after day.
How do you take your coffee? Do you love lots of creamer? Do you drink it black? Do you use flavored creamers to change it up every now and again?
Here is a great link to a friend's blog post about homemade creamers http://marcystyle.weebly.com/blog/october-04th-2015
COFFEE; that smooth, delicious and nourishing magical potion that helps you make it through some of the day. The stuff that takes your mind off the aches, pains, and stress; if only for a short period of time.
Coffee is something to be enjoyed and celebrated. And it is celebrated by so many people. This past week, we even had a National Coffee Day!!
I used to hit the ground running early in the morning, and only need a cup or two of coffee to make it through an entire long day that was a full time job and a part time job. That was back when I was healthy.
This past six years though, coffee has merely kept me somewhat awake while my fatigued body and mind muddle through, day after day.
How do you take your coffee? Do you love lots of creamer? Do you drink it black? Do you use flavored creamers to change it up every now and again?
Here is a great link to a friend's blog post about homemade creamers http://marcystyle.weebly.com/blog/october-04th-2015
Saturday, October 3, 2015
Getting My Life BACK ON TRACK
Oh you know that feeling; the one when you've been isolated for way too long, it's long past cabin fever and has turned into something wicked and eerie? AND you're past the point of getting on your own nerves? AND you're having conversations with your furbabies, and finding out that they have very awesome 'secondary' personalities - which you have given them because YOU ARE TALKING FOR THE FURBABY! Now to most people, this is a wake up call, or at least it was an eye opener for me. I hadn't realized how narrow my view of the world had become while I have spent over five years stuck either in bed or on the couch, and rarely leaving the house unless it was for one of many, many doctor appointments with all of my 'ologists.'
So I said to myself, 'It's time to get back to having a purpose and fighting my way back to getting my life together, no matter what the pain levels are, no matter how little sleep I've gotten. Because I was at that tipping point where it could've gone the way of the eye opening I had, or I could've seriously used an extended stay at a loonie bin for real. I'm glad that my faith in God, my AMAZING husband, my awesome support network of family & friends, and my inner strength have never abandoned me.
I AM A MUTHAFUCKIN WARRIOR!
My body has been through all of Dante's levels of hell in my short 35 years, and not once have I asked God why. Because this is the journey God carved out for me. My formative years matured me quickly, prepared me for many challenges in the real world, and gave me an inner warrior that was hard to contain in my 98lb body. But I did it. And I excelled at life. I tried different jobs, I fell in love, I fell in lust, I had fun, I traveled some, I made many, many great memories with some pretty amazing people, I worked my ass off & was always on the go! I WAS A FORCE OF NATURE, to put it mildly...
Then Autumn of 2009, my body started taking me hostage. AutoImmune Ninjas crept in from God only knows where, and unleashed a torrent of wild, varying, intense, extreme, debilitating symptoms by way of quite a few AutoImmune diseases.
First we found Fibromyalgia hanging out literally e.v.e.r.y.w.h.e.r.e.
Then we began seeing a connective tissue disease progress & transform so quickly, that even after six years, it's looking like Lupus may have been the leader of the AutoImmune Ninjas that crept in. He brought his buddies along to screw up my life and teach my body to attack itself & its healthy cells, and to see the intruders as 'friendlies.'
to be continued. most of my blog posts may come in pieces on occasion since I can't seem to focus on any one thing solely, for more than a short window of time. lovely symptom, yes?
So I said to myself, 'It's time to get back to having a purpose and fighting my way back to getting my life together, no matter what the pain levels are, no matter how little sleep I've gotten. Because I was at that tipping point where it could've gone the way of the eye opening I had, or I could've seriously used an extended stay at a loonie bin for real. I'm glad that my faith in God, my AMAZING husband, my awesome support network of family & friends, and my inner strength have never abandoned me.
I AM A MUTHAFUCKIN WARRIOR!
My body has been through all of Dante's levels of hell in my short 35 years, and not once have I asked God why. Because this is the journey God carved out for me. My formative years matured me quickly, prepared me for many challenges in the real world, and gave me an inner warrior that was hard to contain in my 98lb body. But I did it. And I excelled at life. I tried different jobs, I fell in love, I fell in lust, I had fun, I traveled some, I made many, many great memories with some pretty amazing people, I worked my ass off & was always on the go! I WAS A FORCE OF NATURE, to put it mildly...
Then Autumn of 2009, my body started taking me hostage. AutoImmune Ninjas crept in from God only knows where, and unleashed a torrent of wild, varying, intense, extreme, debilitating symptoms by way of quite a few AutoImmune diseases.
First we found Fibromyalgia hanging out literally e.v.e.r.y.w.h.e.r.e.
Then we began seeing a connective tissue disease progress & transform so quickly, that even after six years, it's looking like Lupus may have been the leader of the AutoImmune Ninjas that crept in. He brought his buddies along to screw up my life and teach my body to attack itself & its healthy cells, and to see the intruders as 'friendlies.'
to be continued. most of my blog posts may come in pieces on occasion since I can't seem to focus on any one thing solely, for more than a short window of time. lovely symptom, yes?
Monday, September 21, 2015
Woes of an Empath
Empaths are used to feeling others' emotions, so being devoid of social connecion isolates us further. Whether the isolation is from social anxiety, chronic illness, recovery, etc....it affects everyone different. For an Empath, isolation is hell.
And because it's a positive trait of ours to feel others' emotions, without interaction we don't feel (even with all the angst, fear, etc emotions that surround us in public) all the extra joy that used to surround us and rush to our soul as an old friend embracing us. Joy that we had put out in this world, bounding all around us in celebration of any & everything.
How many of you have been identified by friends or family members as an Empath?
And because it's a positive trait of ours to feel others' emotions, without interaction we don't feel (even with all the angst, fear, etc emotions that surround us in public) all the extra joy that used to surround us and rush to our soul as an old friend embracing us. Joy that we had put out in this world, bounding all around us in celebration of any & everything.
How many of you have been identified by friends or family members as an Empath?
Sunday, September 20, 2015
It's been a while...
I know it's been over three years since I've been on here. Things keep getting worse instead of better, even when there's an inch of progress, there is an immediate foot of backslide.
Life with Chronic Illnessess & Chronic Pain is not an easy life. You lose friends, you lose your job, you lose your self worth, you lose your purpose.
People like to talk about how Being a Chronic Pain patient can cause depression & anxiety. What about us chronic patients who already had severe depression (with bipolar under review) & moderate panic.anxiety disorder.
Add in social isolation to someone who was a social butterfly.
I can't dig deep today. It's been too rough a week for all that. But, I want to let you all know I'll be blogging again. It's another form of therapy that may help me tremendously when my brain fog isn't too thick for the lighthouse.
Life with Chronic Illnessess & Chronic Pain is not an easy life. You lose friends, you lose your job, you lose your self worth, you lose your purpose.
People like to talk about how Being a Chronic Pain patient can cause depression & anxiety. What about us chronic patients who already had severe depression (with bipolar under review) & moderate panic.anxiety disorder.
Add in social isolation to someone who was a social butterfly.
I can't dig deep today. It's been too rough a week for all that. But, I want to let you all know I'll be blogging again. It's another form of therapy that may help me tremendously when my brain fog isn't too thick for the lighthouse.
Monday, March 19, 2012
Blog Carnival for a friend
http://www.notstandingstillsdisease.com/2012/03/idea.html
'Please check this out and let us know what you think!
'Please check this out and let us know what you think!
Sunday, March 4, 2012
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.
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.
Sunday, February 19, 2012
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!
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!
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.
Sunday, January 29, 2012
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 :-(
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 :-(
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