Even though this isn't a book, let me just preface this post with the fact that I DO understand that doctors are humans too, and all humans make mistakes. But, that said, I do NOT understand how so many doctors could screw up on one person as much as they have with my mom in the past week. Honestly, truth be told, since July 4th. This is a post about my mom. My beautiful, sweet 80yr old mom. Her name is Carol.
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| This was my mom on May 16, 2023, holding her 5-day-old, Great Granddaughter. This is my newest Grandbaby, Aria. |
The morning of July 4th, 2023 I was asleep. My mom had been sitting at her desk alone around 8:30am and her left (if I'm remembering correctly, I'm pretty sure it was the left) arm jerked straight up in the air and started bouncing around, and she couldn't control it. Then, her left (again, whichever side it happened to with her arm, was the same side as her leg) leg did the same thing. She felt a little dizzy at that time too I guess.
I woke up and of course walked out to check on her, make a cup of coffee, etc. She didn't say anything about this to me at all. Her home health aide, who is my youngest daughter, got here for her shift at 11am. I guess in the afternoon before Courtney left Mom told her what had happened. Said she was having dizziness off & on and a headache too. I still wasn't aware of this situation having occurred. After Courtney left, my mom came back to my office & said "I want to talk to you about something" as she sat down in the recliner I have in here for her. I said "Yeah? What's going on?" as she sat. She started telling me what had happened this morning. I told her "Mom! That's not normal. That's something that I should've been told about right away. Something like that, you need to wake me up and not wait"! She said, "Well, you've always said one of the ways to see if someone is having a stroke is to have them stick out their tongue and see if it goes to one side or anything so since you were sleeping this morning I went to the bathroom and did that, and it stayed straight out so I didn't think it was anything important to wake you for". I told her to ALWAYS wake me up if something isn't normal.
As I was talking to her and telling her it's important I'm made aware of something like that right away she started to say something and then she said "Wait, I'm starting to feel really funny again. Something isn't right. I feel funny". Her voice was soft -she's soft-spoken anyway, but this was not her normal, and her voice trailed off. I said, "What feels funny?". She said, "I don't know, I just feel funny". I asked if she was dizzy and she said "Yeah, maybe a little I don't know. I just don't feel right". I said, "Ok, well we need to get you to the hospital". She agreed, as long as I didn't take her to our small community hospital that's only about 5 minutes from our house, even if we hit the red lights. All her doctors are part of Blanchard Valley Health System in Findlay, OH so I said ok no problem I'd take her to the hospital in Findlay. I told her I didn't care where I took her and that she just had to go.
We got to the hospital and I told them I was worried that she was exhibiting stroke symptoms. They took her straight back and already had a team of 4 waiting in the cubicle for her. Did some basic vitals and whisked her off for a CT scan of her brain. They came back and told us that she has had "some strokes" in the past, but didn't believe she was having one right then. Then they said that they believe she had a TIA that day and wanted to admit her overnight for observation and to run some tests on her in the morning. To say I was shocked to hear she had already had "some strokes" is an understatement...how many, I don't know. They didn't say and I was too shocked to think to ask! I've been around the medical field my entire life. HOW did I miss that my mom had previously been sitting home having "strokeS", without me realizing? The next morning they ran an ECHO looking at her heart, and it seems like they did something else but I can't remember what. They discharged her that afternoon saying she had a TIA.
Once home from the hospital, her balance was really off. She has really bad neuropathy in both of her legs from mid-calf down and she has a partial amputation of her left foot, which was done this past April. Three years ago I took her to a neuro appointment and he ran an EEG on her and told me he doesn't know how she was walking, and that from the tests she has no feeling at all from mid-calf down. He said to her brain, her feet and legs should feel like they're floating. She walked pretty d@mn good though, let me tell ya lol. She's just absolutely refused to use a walker. Even after roughly a third of her foot was amputated back in April, she still never had a fall or anything! We have been told that eventually, she wouldn't be able to walk. She kept saying she thought it was just her neuropathy progressing. She was having episodes of dizziness though. She saw a special neurologist within her neurology group, that specializes in just TIA's. My daughter as her aide, with appointments falling during her work hours, has been taking Mom to all of her doctor appointments. Mom also has had an appointment with her GP, who actually is a NP, and at both of these appointments, my Mom and Courtney both told them about her balance being so off, and her getting bouts of bad dizziness and having headaches. Both doctors just fluffed it off as nothing. No further testing was done or anything.
A couple of weeks ago, I had taken Mom to the grocery store. Now in a store, she does agree to use a motorized scooter. Stores are just way too much walking for her. We'd picked up a couple of cantaloupes and when we got home I kept telling her to go sit down & rest because she kept saying how it just wore her out and her legs were hurting. She wouldn't do it though. She had cut one of the cantaloupes in half and was standing bent over the trash can scooping the seeds out of half of it. She lost her balance and fell into our laundry room, which has swinging doors hanging on them, and went down on her left side. She refused to go to the hospital saying she was fine. That she had just lost her balance. Again, she'd just seen 2 doctors recently who both apparently thought she was fine, so I didn't force the issue of her going to the hospital.
Fast forward to this past Sunday, August 6, 2023. She had been hungry for Wendy's, so Dad said that if I'd go get it, he'd buy it for her and me. He didn't want any. So I went and picked up Wendy's for our dinner. She had a spicy chicken sandwich. This was around 6pm I believe. At 10pm I was standing in the living room talking to her and she said "I think I'm going to be sick. Hurry and get my bucket from beside my bed". So I did, and she proceeded to get sick. A little bit later I checked on her and she said that she felt better since getting sick and that she thought it was just a bout of her gastroparesis flaring up. With that, she usually will be sick once, then it goes away. I said that I had worried that maybe she had food poisoning from the chicken sandwich. She said no, that she felt ok so thought it was the gastroparesis. Around 12:30am she was vomiting again. A lot. Over and over. I tried to get her to let me take her to the ER and she said no, that I must have been right and she probably had food poisoning. One of my worst fibro symptoms that I have to combat, is insomnia. Even with sleeping pills, I don't fall asleep unless I take a dose of muscle relaxers and 4-6 Tylenol PM along with the muscle relaxers and prescription sleep pills. Finally, around 1:20am she hadn't been sick in a little bit so I thought "I better take these meds and try to get a little sleep in case she gets sicker and I have to take her out to the hospital". So I took my sleep cocktail and 30 minutes later I felt them starting to kick in so I went in and laid down in bed.
Just as I had drifted off to sleep I heard my dad "Hey Amy"? He was outside of my bedroom door. I said "Yeah"? and he said, "Hey I think you better take your mom out to the hospital she's really sick". I hollered ok I was coming and flew out of bed. I heard her vomiting. Over and over. I went in and got her shoes on her, with her sitting up on the edge of her bed. I helped her get out to the living room and sat her in her recliner. I then raced to throw clothes on myself. Once dressed I said, "Ok, let's go"! I helped her stand up and could tell at that point that this was going to be hard. She was having sharp stabbing pain in her temple, had very little balance, was dizzy, and vomiting horribly. I told my dad I was going to need his help, getting her out to my car. He got on one side of her and I got on the other. She managed a few steps TO the door but then said "Wait wait wait I've gotta sit down I'm gonna be sick". I looked at my dad and told him that there was no way that we were going to get her all the way out to my car. I said that I hated to call a squad to take her, where it was now around 2:30am on a work night, and we live in a subdivision where everyone around us just about, works. I had no choice though. I called 911 and they picked her up and took her via ambulance to our little local hospital here in Fostoria.
At the hospital, I told them all of her symptoms along with the timing of everything, but I also told them her recent history. I told them about the TIA and overnight admission at BVH back on July 4th and told them that BVH had told me that she HAD had "some strokes" in the past, so stroke was my main concern. Mind you this hospital, our tiny little local hospital, is the same network as the big hospital she's currently in. A hospital with a new state-of-the-art, 16-bed Neuro ICU unit. They are the SAME HOSPITAL SYSTEM so you would think that they'd be VERY aware and cautious about patients presenting with history and symptoms of stroke. They took her down and did a CT scan, then came in and told us "Everything looks good. There are a few viruses going around right now, so it's probably just a virus". They discharged her with a script for Zofran.
Monday, she still was so dizzy and vomiting. The Zofran wasn't working at all. I tried to get her to let me take her to the hospital again. She said, "No! It's just a virus, the doctor said so. I'll be alright". I said, "Ok but Mom I'm not convinced it's a virus. If you aren't any better by tomorrow, and if Dad, Courtney, or I aren't showing symptoms of coming down with it, you're gonna have to go in again". She just kind of ignored me lol.
It's now the next day. Tuesday, July 8th. My Dad plays pool in a league in Findlay on Tuesday nights. He leaves around 5pm to go shoot pool. -Mind you, he's an 84yr old that is said to be in stage 4 CHF. He breathes horribly at night, but he sure gets around and does what he wants during the day. Nobody would ever believe he's 84 and the health conditions he has, if they didn't know him! Courtney's shift as an aide had ended at 4pm. Earlier that day, I was in Fostoria door dashing. With mom so sick I didn't want to leave town. I came home though, in time for my Dad to leave to shoot pool so that Mom wouldn't be home alone. She was way too sick to be home alone. She had asked me to bring her home some ginger ale, so I did. She took a small swallow of it and immediately started vomiting again. I said, "Mom, you can't keep anything down. If I can't keep any liquids down you I can't keep you hydrated here at home. Virus or not, I have to take you to the hospital. You really need some IV hydration badly"! She shook her head ok and said "As long as you take me to Findlay. I don't want to go up here". I told her I'd take her anywhere she wanted me to, as long as she'd go. This time, she was able to make it to my car with my help. I got her into the car, and the poor thing just vomited and vomited the entire way there. She said, "This car ride is making me motion sick".
We get there, and they're packed! The triage nurse, MA, whatever she was, was a real b!tch!! She was sooooo annoyed because I said I needed a wheelchair and some help getting my mom out of the car and in. I told her what was going on. There was a young new mother there, her father had her baby watching it for her, that was being triaged. The nurse let out a loud audible sigh and said with a real snotty tone to her, "I'll be right back. I'll never understand how people can get into a car to come here, then suddenly be too sick to walk in on their own". Now, people who know me in person know how badly I hate confrontation and they know that I'm usually the nicest person ever. But let me make everyone aware ....when it comes to my kids, my grandkids, or my parents my switch can flip in 2.1 seconds. I felt a rush in my head and started to open my mouth to tell her what I thought of her and her $hitty attitude, but then luckily I quickly realized right then, it didn't really matter. Just get my mom in here and get her assessed lol.
She brings Mom inside. Leaves her sit and finishes triaging the young new mother and sent her back to a room. She then triages Mom and says "We're all full back there so just find somewhere to sit and wait and we'll come get you when we have room. She started to grab the wheelchair to wheel her for me and I said "Don't do that. You're apparently too busy to be bothered wheeling people around that can walk to a car on their own". I just couldn't help myself, you guys. Life Coach, Emotional Intelligence Coach, Meditation Facilitator & Coach or not I am human too lol. I was disgusted as he!! that they weren't taking her straight back. In my opinion, an 80yr old woman with a history of strokes (that again, we never knew she'd had while she was having them), had a month ago been hospitalized for a TIA, and had been vomiting for getting close to 48 hours, had a "real bad" (her words) headache, and her top number of her BP when triaged was over 200 should have trumped a new mom who's stomach hurt and had a temperature of 99.7. -Yes, I have been trained to triage. Remember, I had only been 4 months away from sitting for Ohio State Nursing Boards when I had to drop out of school due to my then-husbands job requiring us to move out of state. I also AM a Nationally Certified Clinical Medical Assistant.
I waited outside for about an hour then came back in. She had just gotten back to her room and there were 2 girls in there with a machine, and told me to step out for just a minute that she was getting ready to do a chest x-ray. I stepped back out as far as she was, and she took the x-ray and they left. I sat down in the room and Mom told me she had just gotten back. I don't think it was even 10 minutes after that, the doctor came in. This was the first time we had met her. She hadn't been in once yet to talk to, or access mom herself.
When the doctor entered the room she said hello and what her name was. She grabbed the stool and sat down beside Mom's bed and said "Well, she's had a pretty major stroke. It happened in her cerebellum". I explained how on the 4th of July when I had her out there, the doctor had told us that she'd "had some strokes" in the past and then TIA on the fourth. She started shaking her head and said "We compared her scans tonight to those, and this is new". I literally was shocked once again. I said, "It's showing a new stroke since she was here on the fourth? I even had her at FCH Sunday night, technically Monday morning and they did a CT and told us it was just a virus and sent us home"!! She said, "Ok, so she DID have a CT at FCH then?" I told her yes. She said, "Well, she had to have had the stroke Sunday night when her symptoms first started around 10pm then because it takes at least 6hrs for a stroke to show on a CT scan. So if it were showing when FCH did the CT, they wouldn't have just sent her home saying it was just a virus. I am really sorry, but that was Sunday night and we're at Tuesday evening now so we're way, way past the time frame to be able to give her tPA. We're definitely admitting her to keep an eye on her though". I said I would stay with her until they took her up to a room.
I can't even tell you what time all of this took place, but after waiting and waiting for them to take her to a room I asked a nurse that came in to give her some Zofran, trying to stop the vomiting, if she had any idea how much longer it would be until she was taken upstairs to a room. She started shaking her head no and said, "It all just depends on how quickly they discharge patients and get the room ready up there". I said, "Wait, it depends on how fast they discharge patients? They won't be sending anyone home this late would they? You mean she may be in the ER all night?" She told me "Unfortunately yeah, I'm pretty sure she probably will be right here over night". At that point, I think it was around 11pm or maybe even midnight? I'm just not sure. I told her and Mom that I originally was going to wait until they took her up to a room, but there was no way I'd be able to stay there overnight sitting up in those hard, tiny ER cubicle chairs. I said I was going to go home but would be up to see her in the morning.
The next day, my dad went up there in the morning. He's usually up every day anywhere from 5:30am-7:30am. With my insomnia, there's been days where I'm just laying down to try to get a couple of hours of sleep in when he's just getting up to start the day haha! When I got up, I called him and asked if Mom was still in the ER or if they got her into a room. He said she was still in the ER. I told him that I'd get woken up, then get around and come up there.
When I arrived, my Dad and my oldest son were there and my Mom still was in the ER! Shortly after I got there, they came in and said they were taking my mom for an MRI. Dad and Cody waited until she came back to her "room" and then told her goodbye. My son had to get back to work, and my Dad told her he'd be back up that evening to see her. I had planned to go ahead & leave too, and door dash there in Findlay for a little bit, then stop back in to check on her and be with her, after dashing before I headed home. It dawned on me then, "Wait! She has dementia, she's just had a pretty major stroke, and no one will be here when those results come back. She'll never remember what they said about them probably so I better just stay here until we get the results". Thank God I did! It was really fast, that this guy came into the room. He introduced himself as the head ER charge nurse and said that after seeing Mom's MRI they called him down. He said that the MRI showed that Mom had originally had an ischemic stroke and that they had given her heparin last night to try to break up the clot but that it didn't work. He said it had now converged into a hemorrhagic stroke. I said, "You mean she is still actively bleeding?" He said "Yes, she is still actively bleeding. Our doctor is on the phone right now with the neurologists from ProMedica Toledo Hospital. We sent her scans to them and they said she's actively bleeding and they want us to transfer her up to them. So they called me down here to explain what's going on and for me to get the transfer going".
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| Selfie I took of Mom and I while waiting for life flight to get there. Please excuse the tears that are blinding my eyes. They weren't running down my cheeks so that was a WIN in my book for me! |
Hearing that your mother is still actively bleeding, basically laying there stroking out in front of you, is absolutely terrifying. He and I were down at the foot of her bed and I was facing him, my back to my mother. I didn't want her to know how scared and upset I was, but when he told me that it took everything in me not to just crumple to the floor. Choking back tears I whispered "What will they do? Will she have to go into surgery for them to try to remove the clot or what? Is she going to die?" He said, "Well they have a few different interventions they can do up there, but I would prepare yourself that there's a good chance that they might need to take her to surgery, and it's really hard to say if she'll survive or not but you might want to prepare yourself for the worst". At that moment I couldn't stop the tears from sliding out of my eyes and rolling down my cheeks. I told him I was sorry, but I was gonna have to step outside for a minute to pull myself together and call my dad and my kids. He said he completely understood. I was probably 10 steps outside of the hospital ER doors when I heard someone running and yelling "Ma'am? Ma'am?" so I stopped and turned around. It was the charge nurse again. He said "Our doctor just got off the phone with ProMedica and the neurologists there don't want to take the time to bring her by ambulance. They just want us to get her there so they said to call life flight. She will be life-flighted so this all is going to be happening pretty fast. Go ahead though and take the time you need and make your calls though". He could tell by the look on my face that I was about to completely lose it and said "Are you ok?" to which I replied not able to choke the SOBS back anymore, "She's going to die, isn't she"? He hugged me and said, "I'm so sorry". I pulled away and went to my car.
I pulled myself together, but my youngest daughter and her fiance had just been getting ready to leave to head to Findlay to see Mom, right before I got her MRI results, so I knew I had to call her to get her stopped. I thought of this AFTER I pulled myself together as best as I could and was walking back into my mom's "room". Mind you, my mom has always been petrified to fly! She is 80 years old and has never once built up the courage to get on a plane. I was scared to have her find out she was going to have to go by life flight. I was afraid that she would be so scared, that it would cause her BP to run even higher than the 193 to 200-something (top number) that she'd been running the entire time we'd been there and would just completely stroke her out. I told her ER nurse (not the charge nurse) and asked if we could give her some Ativan or something to calm her before we told her. He agreed with me that it probably would be a good idea that he'd go talk to the doctor. Now remember, I have never even MET this daytime ER doctor and only saw the doctor that dx'd her stroke once! So I had seen and talked to ONE doctor, ONE time, in the 19-20 hours she'd been laying in their ER. The nurse told me at that time, that life flight would be there in about 20 minutes.
I called Courtney and told her not to head to Findlay, that life flight was on its way to get her and take her to Toledo. She did what my first reaction to do had been. She started losing her $hit!! She kept saying through sobs, "People don't survive a hemorrhagic stroke Mom, and especially someone who's 80! What do you mean life flight will be there in about 15 minutes so not to come? You mean I can't even see my grandma again for one last time"? By this point, she was really loud and really crying. I know how close she is to my mom and I myself figured she would never get to see her grandma alive again. I can't even tell you what else she was saying because I just kept saying "Courtney. Courtney. Courtney." getting louder each time. I kept trying to tell her to pull her $hit together. She finally actually stopped & heard me. I told her IF she could stop & pull herself together I would video call her so she could see and talk to Mom before life flight got there. I told her if she did NOT get herself together that I wouldn't video call her. I did NOT want my mom to see ANYONE scared enough that they were crying & basically hysterical. I wanted nothing but positivity surrounding her and didn't want her any more scared than she already had to be. For my mom, we ALL had to keep it together as best we could in front of her. I told Courtney that I was hanging up now, and I'd give her a few minutes then I'd video call her. She said ok. I waited a few minutes, then called and she got to see and talk to Mom.
The nurse was in there at that time, and right after I hung up, the life flight team came in. It was immediately apparent that the older lady, probably around my age, was the one in charge. I don't know if she was a doctor or a nurse or what but she was most definitely in charge and was literally BARKING at the BVH nurse. In all honesty, she was scary as he!! to me haha. -At that point anyway. She was asking the nurse questions. She wanted to know why he was just getting ready to give my mom a shot of Ativan. He explained what I had told him about mom's fear, and that the doctor ok'd the dose. She quickly and meanly started barking out all of the reasons why Ativan should NOT be given at this point and said it pi$$ed her off that the doctor there would even ok it. So then she really started asking a lot of questions. -Why did you do this test? Why didn't you do that test? Why did you give this medication? Why didn't you give that medication? She asked why Mom's BP was that high & said "Why isn't she on a drip?". I timidly spoke up and said "Well since yesterday when we got here..." and she cut me off yelling, "Yesterday? She's been HERE since yesterday?" I nodded my head and said, "Yes I got her here somewhere around 6pm yesterday". She said, "She's been here, in this ER, since yesterday?" to which I again nodded my head yes, even though I knew the question was rhetorical and that whoever this lady in charge was, was not happy at all. In fact, she was downright LIVID! I told her that the ER charge nurse had told me that they hadn't given her anything to bring down the blood pressure "Because that might be helping. The extra pressure of it running high might just be putting enough pressure on those vessels to keep the bleeding slowed. If we lowered her BP, it may end up letting that bleed really let loose". If I could only describe the look of anger on this lady's face. Her arms were crossed over her chest and her foot and hip were cocked out. Her head was down and to the side a little bit and she just started shaking her head and said "No, that's a bad move. It doesn't work that way".
Her crew then lifted Mom from the ER bed to the life flight bed. I knew it was time for me to go, even though there was no way I would ever make it to Toledo by the time Mom got there. I told the team that I just needed to give my mom a kiss before I left. I kissed her and kept saying how much I loved her and how strong she was. I said "You've had a major stroke but you can still talk, your face isn't droopy, you can move and use both of your arms and legs and hands. You're winning!! YOU are amazing. You're a miracle and you're the strongest woman I've ever known. Just look at everything that you've beat over the years! Dad wants me to come home and ride up to Toledo with him. You're going by helicopter, so you'll be there before we can get there but I will see you in Toledo! Dad and I will be there for you. Don't be afraid to fly either Mom, I promise you it's really fun".
As I turned away from her and headed out of the cubicle, I couldn't help but for the tears to now come sliding down my cheeks. I still was able to stay silent though, and not sob. As I approached the scary lady, she became not so scary. She stopped me and reached up and hugged me. She hugged me tight for at least 30-45 seconds and she whispered in my ear to me, "I'm so sorry. I'm so sorry that they've fuc$ed this up the way they have". It dawned on me instantly that this lady is NOT scary. This lady just knows her $hit and truly CARES about her patients.
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| Mom August 12, 2023 at ProMedica Toledo Hospital Neuro ICU On the drive back to my house, to ride to Toledo with my father, I told my BFF "I just had to drive away from my mom, for what probably will be the last time I ever see her alive again. She's probably going into emergency surgery as soon as she gets there and we won't be there yet, and she probably won't survive the surgery. My mom is probably dying, and I know she's scared, and she's petrified of flying and I just had to drive away, leaving her all alone. That shatters my heart to know she's scared and alone". I knew she had a life flight crew, but alone as in nobody with her that loves her and cares about her that she knows & trusts. I used the drive home, to go ahead and let myself cry and be hysterical, but knew I had to have it together by the time I got home. My dad is a pretty non-hysterical type of person and doesn't believe in crying. He doesn't think anyone should cry. I didn't want yelled at by him for being so upset, on top of how upset I truly was. So I pulled it together again. My uncle, Mom's brother, was already at the hospital by the time I got to my house. As Dad and I were walking out to get in the car, he called me. He said that she was still in the ER being assessed and that they wouldn't allow him back with her. He said that she had already been admitted to a room in Neuro ICU, so they made him go upstairs and wait in the Neuro ICU waiting room so just to come straight up there. I told him yeah, that they had given me the room number for her while she was still at BVH. When we were almost there my daughter Courtney called me. She and her fiance got there probably around 30-45 minutes before we made it there. She said that she had pushed the button and asked a nurse for an update since nobody had heard anything and it had been like 2hrs since Mom had arrived. She said the nurse told her that mom was stable and was currently getting a CT scan. Shortly after Dad and I got there a nurse came out and said that we could see Mom now, 2 at a time. Now, get this ....they said that Mom was NOT actively bleeding!! My mouth LITERALLY fell open, you guys! I said no, they told me that she had an ischemic stroke that converged and that she now has a hemorrhagic stroke, that she's actively bleeding. She was shaking her head no. She said, "No, it did NOT converge. She isn't actively bleeding. I don't know who read her results and said she was actively bleeding, but I'm really sorry that was communicated to you". I said, "The charge nurse at BVH told me that they sent you guys her scans and you guys looked at them and said it had converged and she was actively bleeding to get her to you now and by life flight". She said, "Nobody from here told them that so I am really sorry that you've just had to go through that". From this right here, I learned that a person CAN be extremely angry, yet extremely thankful, at the exact same time lol. Now, Mom is still as of today, Sunday, August 13, 2023, in Neuro ICU. She has been under watch for possible emergency surgery to remove a portion of her skull to relieve pressure from swelling in her brain. As of Saturday, August 12, 2023, they removed the arterial line because she had been SO stable. I was again warrened though, about how quickly someone in her position "could" deteriorate, but that she was doing good holding steady so long. Today, August 13th, they finally had her work with PT for the first time. They got her up and into the chair in her room. She sat in the chair for an hour and a half! They told me that right now she does lean to the side when sitting. They wedged a pillow on her to try and help her sit without leaning. She's still flunking the swallow study, so she's still being fed via NG tube. They told me that speech pathology will work with her though, and help her build those swallow muscles back up again. -To hear my mom literally beg for "just one sip of something cold" or "A great big cup of ice cubes" and have to withhold it from her, really hurts me. I keep explaining to her why she can't have it yet, while also trying to reassure her that the SLP will have her swallowing again in no time! lol To say I've been on a week-long mental rollercoaster ride is an understatement. I'm in a huge fibro flare from the stress and anxiety. My middle back hurts so bad sitting here that I literally am nauseous. I get areas of tingling in my body. My head hurts. I can't begin to explain how COMPLETELY EXHAUSTED I am right now mentally and physically both, from the fibro flare that the stress has caused. I'm just absolutely exhausted. Anyone with fibro knows though, that with fibro you wake up each day, every bit as tired as when you went to bed. Now add in my worst fibro symptom, insomnia, and try to figure out how tired I am. It's already 2:54am Monday morning and I STILL haven't even been able to turn on a tv show to listen to, while I play mindless games on my phone. That is the distraction technique and one I have to use normally each night anyway. With all I have going on right now, I need it for that too lol. I'm going to sign off now, to try to be able to do that and still get a little sleep. -It's SO scary to me to sleep right now, as I'm always afraid I'll be woken up by my phone ringing with the hospital saying she took a bad turn south on us. But I really do need to try to get a little sleep. Our lawn guy will be here mowing around 9:30-10am. So if I can unwind in the next hour to an hour and a half I can still catch a few Zzzz's lol. Ya'll know the motto of this blog. "Never Give Up HOPE. Without HOPE, you don't have anything"!! Even though I always live my life by this motto, I literally have been CLINGING to it for the past 1 week. So my fellow froggies, remember to Never give up HOPE! Also remember, always try to educate and advocate about fibromyalgia. I still believe that education is key and is what will unlock funding for future research. I still live with the HOPE, that someday a cure will be found! |
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