ManaCarolina

@aschweinhagen08
Community Voices

I can clearly see now, some of you don’t want me here.

I won’t tell names. You know who you are. You don’t want me here. I even don’t mention why I think you don’t want me here. I see all of you answering to others, even to a man is a narcissistic and you don’t see it. Anyway. Even one took the time to tell me couldn’t help me in my post about pills.

I am too much even for you. In both senses☺️

I have enough of hypocrisy and envy.

#MECFS #Fibro #Depression

11 people are talking about this
Community Voices

PTSD or Overdramatic? #PTSD #Trauma

So, I want to preface this post by explaining something. I’ll keep it as short as I can.

Growing up, I spent nearly every weekend with my grandparents. They were the best humans to us back the . My grandpa was my bestie. He spoiled me rotten. Well in 2015, my grandma passed from cancer. It was a long battle she had been fighting for a couple years. We were all a mess. Then, my grandpa started to drink. So he started paying me to come over and clean up the house and what not. I was 16 and didn’t have a job so why not? Well, December 2016 came around and we tried to prepare for Christmas, as it was always my grandma’s favorite holiday. My grandpa asked if I wanted to come with him to shop for Christmas. I obviously said yes. He was sad and lonely and I wanted to help. Well the night before we were supposed to go, I went with my boyfriend at the time to a basketball game and tried to call my grandpa and wake him up (he worked nights about 2 hours from home and needed help waking up). And he didn’t answer. I called a couple times and I was getting angry because I figured he drank too much and was just wasted. So I gave up and figured that he would maybe learn his lesson if he missed work. The next morning, my mom wakes me up and asks if I talked to him. I told her I tried but he never answered. She had tried to call him and he also never picked up and she was getting worried. She said she was going to go check on him and I jumped out of bed to go with her.

We got there and we found him. Dead. On his bathroom floor. I won’t go into much afterwards, but needless to say, it was not a great day and I think about it a lot.

Fast forward to Friday. Im at work. My husband, ironically, also works midnights. And I do want to mention that he had renal cancer a couple years ago.

So while im at work he sleeps and he messages me when he gets up. But on nights he doesn’t work, he sleeps in a little longer. So I waited and figured he was sleeping in. But an hour passed and I still hadn’t heard from him and my dad was going to take something to my house to drop off so I was calling him, which usually wakes him up. I called him probably 15 times and after the 3rd try, I started to get concerned. My boss told me to run home to check on him and so my dad could bring the stuff in. So I raced home (I live close), and ran in to see if he was okay. He was, thank goodness but I started to cry. I wrapped my arms around him and just cried. He’s like ‘is this because I had cancer?’ Im like ‘yes but also because of my grandpa’.

My dad and my husband don’t get it. I ended up getting mad at him because he acted like it was something I didn’t have to be so freaked about. I told him, ‘you have no idea what I went through that day. You weren’t there. You lose someone you love so suddenly and then find them like that…..’ He did apologize for making it seem like I made a big deal about it.

Now I’m just wondering, is this what PTSD is? I haven’t been diagnosed with it but I genuinely feel like I have it. This wasn’t the first time I’ve left work thinking my husband was dead because he slept through his alarm. I wish I could turn it off but I can’t. My mom is the same way with my dad. We both act the same about it. So….possible PTSD or am I overreacting?

10 people are talking about this
Community Voices

PTSD or Overdramatic? #PTSD #Trauma

So, I want to preface this post by explaining something. I’ll keep it as short as I can.

Growing up, I spent nearly every weekend with my grandparents. They were the best humans to us back the . My grandpa was my bestie. He spoiled me rotten. Well in 2015, my grandma passed from cancer. It was a long battle she had been fighting for a couple years. We were all a mess. Then, my grandpa started to drink. So he started paying me to come over and clean up the house and what not. I was 16 and didn’t have a job so why not? Well, December 2016 came around and we tried to prepare for Christmas, as it was always my grandma’s favorite holiday. My grandpa asked if I wanted to come with him to shop for Christmas. I obviously said yes. He was sad and lonely and I wanted to help. Well the night before we were supposed to go, I went with my boyfriend at the time to a basketball game and tried to call my grandpa and wake him up (he worked nights about 2 hours from home and needed help waking up). And he didn’t answer. I called a couple times and I was getting angry because I figured he drank too much and was just wasted. So I gave up and figured that he would maybe learn his lesson if he missed work. The next morning, my mom wakes me up and asks if I talked to him. I told her I tried but he never answered. She had tried to call him and he also never picked up and she was getting worried. She said she was going to go check on him and I jumped out of bed to go with her.

We got there and we found him. Dead. On his bathroom floor. I won’t go into much afterwards, but needless to say, it was not a great day and I think about it a lot.

Fast forward to Friday. Im at work. My husband, ironically, also works midnights. And I do want to mention that he had renal cancer a couple years ago.

So while im at work he sleeps and he messages me when he gets up. But on nights he doesn’t work, he sleeps in a little longer. So I waited and figured he was sleeping in. But an hour passed and I still hadn’t heard from him and my dad was going to take something to my house to drop off so I was calling him, which usually wakes him up. I called him probably 15 times and after the 3rd try, I started to get concerned. My boss told me to run home to check on him and so my dad could bring the stuff in. So I raced home (I live close), and ran in to see if he was okay. He was, thank goodness but I started to cry. I wrapped my arms around him and just cried. He’s like ‘is this because I had cancer?’ Im like ‘yes but also because of my grandpa’.

My dad and my husband don’t get it. I ended up getting mad at him because he acted like it was something I didn’t have to be so freaked about. I told him, ‘you have no idea what I went through that day. You weren’t there. You lose someone you love so suddenly and then find them like that…..’ He did apologize for making it seem like I made a big deal about it.

Now I’m just wondering, is this what PTSD is? I haven’t been diagnosed with it but I genuinely feel like I have it. This wasn’t the first time I’ve left work thinking my husband was dead because he slept through his alarm. I wish I could turn it off but I can’t. My mom is the same way with my dad. We both act the same about it. So….possible PTSD or am I overreacting?

10 people are talking about this
Community Voices

PTSD or Overdramatic? #PTSD #Trauma

So, I want to preface this post by explaining something. I’ll keep it as short as I can.

Growing up, I spent nearly every weekend with my grandparents. They were the best humans to us back the . My grandpa was my bestie. He spoiled me rotten. Well in 2015, my grandma passed from cancer. It was a long battle she had been fighting for a couple years. We were all a mess. Then, my grandpa started to drink. So he started paying me to come over and clean up the house and what not. I was 16 and didn’t have a job so why not? Well, December 2016 came around and we tried to prepare for Christmas, as it was always my grandma’s favorite holiday. My grandpa asked if I wanted to come with him to shop for Christmas. I obviously said yes. He was sad and lonely and I wanted to help. Well the night before we were supposed to go, I went with my boyfriend at the time to a basketball game and tried to call my grandpa and wake him up (he worked nights about 2 hours from home and needed help waking up). And he didn’t answer. I called a couple times and I was getting angry because I figured he drank too much and was just wasted. So I gave up and figured that he would maybe learn his lesson if he missed work. The next morning, my mom wakes me up and asks if I talked to him. I told her I tried but he never answered. She had tried to call him and he also never picked up and she was getting worried. She said she was going to go check on him and I jumped out of bed to go with her.

We got there and we found him. Dead. On his bathroom floor. I won’t go into much afterwards, but needless to say, it was not a great day and I think about it a lot.

Fast forward to Friday. Im at work. My husband, ironically, also works midnights. And I do want to mention that he had renal cancer a couple years ago.

So while im at work he sleeps and he messages me when he gets up. But on nights he doesn’t work, he sleeps in a little longer. So I waited and figured he was sleeping in. But an hour passed and I still hadn’t heard from him and my dad was going to take something to my house to drop off so I was calling him, which usually wakes him up. I called him probably 15 times and after the 3rd try, I started to get concerned. My boss told me to run home to check on him and so my dad could bring the stuff in. So I raced home (I live close), and ran in to see if he was okay. He was, thank goodness but I started to cry. I wrapped my arms around him and just cried. He’s like ‘is this because I had cancer?’ Im like ‘yes but also because of my grandpa’.

My dad and my husband don’t get it. I ended up getting mad at him because he acted like it was something I didn’t have to be so freaked about. I told him, ‘you have no idea what I went through that day. You weren’t there. You lose someone you love so suddenly and then find them like that…..’ He did apologize for making it seem like I made a big deal about it.

Now I’m just wondering, is this what PTSD is? I haven’t been diagnosed with it but I genuinely feel like I have it. This wasn’t the first time I’ve left work thinking my husband was dead because he slept through his alarm. I wish I could turn it off but I can’t. My mom is the same way with my dad. We both act the same about it. So….possible PTSD or am I overreacting?

10 people are talking about this
Community Voices

Sweating

I too have issues with my body overheating. I can tell when it starts, the back of my ears start to itch, then my neck right below my ears. My forehead starts sweating and I start to panic. I seems as if I keep getting hotter and hotter. If I don’t find a way to cool down I get nauseated and feel like I am going to pass out. This has been going on for a few years, other than fibro I am healthy. All of my blood stats are fine, I take very little medicine, but a lot of vitamins. No answers there either. It is not a typical hot flash, I’m way past that stage. Right now our AC temp. is 72, I am comfortable , but I have a blanket wrapped around my left foot because it is freezing. I sure wish we could get some answers, it all makes no sense and is just crazy with no rhyme or reason.

16 people are talking about this
Community Voices

PTSD or Overdramatic? #PTSD #Trauma

So, I want to preface this post by explaining something. I’ll keep it as short as I can.

Growing up, I spent nearly every weekend with my grandparents. They were the best humans to us back the . My grandpa was my bestie. He spoiled me rotten. Well in 2015, my grandma passed from cancer. It was a long battle she had been fighting for a couple years. We were all a mess. Then, my grandpa started to drink. So he started paying me to come over and clean up the house and what not. I was 16 and didn’t have a job so why not? Well, December 2016 came around and we tried to prepare for Christmas, as it was always my grandma’s favorite holiday. My grandpa asked if I wanted to come with him to shop for Christmas. I obviously said yes. He was sad and lonely and I wanted to help. Well the night before we were supposed to go, I went with my boyfriend at the time to a basketball game and tried to call my grandpa and wake him up (he worked nights about 2 hours from home and needed help waking up). And he didn’t answer. I called a couple times and I was getting angry because I figured he drank too much and was just wasted. So I gave up and figured that he would maybe learn his lesson if he missed work. The next morning, my mom wakes me up and asks if I talked to him. I told her I tried but he never answered. She had tried to call him and he also never picked up and she was getting worried. She said she was going to go check on him and I jumped out of bed to go with her.

We got there and we found him. Dead. On his bathroom floor. I won’t go into much afterwards, but needless to say, it was not a great day and I think about it a lot.

Fast forward to Friday. Im at work. My husband, ironically, also works midnights. And I do want to mention that he had renal cancer a couple years ago.

So while im at work he sleeps and he messages me when he gets up. But on nights he doesn’t work, he sleeps in a little longer. So I waited and figured he was sleeping in. But an hour passed and I still hadn’t heard from him and my dad was going to take something to my house to drop off so I was calling him, which usually wakes him up. I called him probably 15 times and after the 3rd try, I started to get concerned. My boss told me to run home to check on him and so my dad could bring the stuff in. So I raced home (I live close), and ran in to see if he was okay. He was, thank goodness but I started to cry. I wrapped my arms around him and just cried. He’s like ‘is this because I had cancer?’ Im like ‘yes but also because of my grandpa’.

My dad and my husband don’t get it. I ended up getting mad at him because he acted like it was something I didn’t have to be so freaked about. I told him, ‘you have no idea what I went through that day. You weren’t there. You lose someone you love so suddenly and then find them like that…..’ He did apologize for making it seem like I made a big deal about it.

Now I’m just wondering, is this what PTSD is? I haven’t been diagnosed with it but I genuinely feel like I have it. This wasn’t the first time I’ve left work thinking my husband was dead because he slept through his alarm. I wish I could turn it off but I can’t. My mom is the same way with my dad. We both act the same about it. So….possible PTSD or am I overreacting?

10 people are talking about this
Lyndell Coutts

Dealing With the Unpredictability of Fibromyalgia

Today my skin is burning all over my body and in some patches, it feels like my skin might even rip open. The burning crawls up my arms and legs. But today is not the worst. I have no itching or burning in my mouth, ears and eyelids. Today is a relatively good day. I haven’t done anything differently. Like most days, I got up and showered, caught the bus to work, sat at my desk doing my job and so it goes. I’m thankful I feel lucid and didn’t confuse my words in a meeting. I imagine others, as I do, constantly checking their symptoms online to see if what they’re feeling on a particular day is fibromyalgia-related. For me, mostly it is. It’s pretty incredible just how many symptoms are associated with this confusing and challenging illness. Yes I know I’m not alone in my struggles and I’m keen to hear from others about what they do to ease their flare-ups, their bad days. Sometimes the pain is all-consuming. It tests my resilience. It frightens me. It makes me wonder what the future holds. I worry about sleeping too much, or not enough. I worry about my concentration. I worry I’m irritable. But this is my now and my future, so what do I do to cope with this illness and its unpredictability? Here’s my personal top five: 1. Accept I have an illness. 2. Don’t be too hard on myself if I can’t do everything I planned to do any given day. 3. Listen to my body. If it hurts, don’t push myself where I can make things worse. 4. Remove myself from stressful situations. 5. Monitor my pain in a journal, to be able to report back to my doctors. I know this may all seem simple and obvious, but it’s how I’m coping. It’s also extremely important for me to share how I’m feeling with friends and family, so if I’m not having one of my good days, they will understand even if I cancel on them at the last minute. Let’s hope now there are more good than bad!

Community Voices

No medication

I need advice. Or just some positive thoughts. I’m at a breaking point and don’t know what to do.

I’ve been taking Pregabalin for my #Fibromyalgia . I was on 2 pills a day but at my last appointment with my rheumatologist, she suggested going down to one to help with how tired I was (also taking Amitriptyline). So I went down to one for about 3 weeks and I wasn’t feeling great and felt I needed the second dose. I messaged her on MyChart and she approved going back onto two pills a day.

Well….when I refilled it last, I didn’t realize this until this past Sunday, but the instructions still say 1 pill once a day. Therefore, I took a 2 month supply in 1 month, leaving me completely out and empty. I’m on day 4 of no medication. Sunday night, I sent in the refill. Monday, I called the pharmacy and really realized why my prescription couldn’t get filled. But I still had mondays pills. I called my doctor monday. Left a message. Tuesday I was completely out. Called again. Decided to speak with the operator and she transferred me to the same line I left a message on the day prior. Left another message. Wednesday I was so over it so I didn’t attempt it. Yesterday, I really started getting upset. I called my rheumatologist again. Tried to speak to a nurse. Phone rang and rang and rang. Called again. Left ANOTHER message. I sent her a message on MyChart yesterday, which the staff viewed 2 hours after I sent it. I called my pharmacy and asked them to reach out. THEY left a message. I contacted my primary. She’s out until Monday and he nurse suggested I call the rheumatologist’s nurse. I called the nurses line again today and someone answered. Told her what the deal was, I’ve been out and today was the first time I’ve actually spoken to anyone. She was going to send her a message and get back to me. This was probably 6 hours ago? I thought maybe she was on vacation, but no one said anything and there should be plans in place for docs who go on vacation. So here I am, 4 days without the only relief I’ve had since being diagnosed. I’m upset. I’m frustrated. I’m at a point where I just want to cry. I JUST need the instructions changed so I can refill it. I feel miserable. I’m back to barely being able to walk, my arms can barely hold my phone….I’m exhausted.

#Spoonie #chronicillnesproblems #help

5 people are talking about this
Community Voices

No medication

I need advice. Or just some positive thoughts. I’m at a breaking point and don’t know what to do.

I’ve been taking Pregabalin for my #Fibromyalgia . I was on 2 pills a day but at my last appointment with my rheumatologist, she suggested going down to one to help with how tired I was (also taking Amitriptyline). So I went down to one for about 3 weeks and I wasn’t feeling great and felt I needed the second dose. I messaged her on MyChart and she approved going back onto two pills a day.

Well….when I refilled it last, I didn’t realize this until this past Sunday, but the instructions still say 1 pill once a day. Therefore, I took a 2 month supply in 1 month, leaving me completely out and empty. I’m on day 4 of no medication. Sunday night, I sent in the refill. Monday, I called the pharmacy and really realized why my prescription couldn’t get filled. But I still had mondays pills. I called my doctor monday. Left a message. Tuesday I was completely out. Called again. Decided to speak with the operator and she transferred me to the same line I left a message on the day prior. Left another message. Wednesday I was so over it so I didn’t attempt it. Yesterday, I really started getting upset. I called my rheumatologist again. Tried to speak to a nurse. Phone rang and rang and rang. Called again. Left ANOTHER message. I sent her a message on MyChart yesterday, which the staff viewed 2 hours after I sent it. I called my pharmacy and asked them to reach out. THEY left a message. I contacted my primary. She’s out until Monday and he nurse suggested I call the rheumatologist’s nurse. I called the nurses line again today and someone answered. Told her what the deal was, I’ve been out and today was the first time I’ve actually spoken to anyone. She was going to send her a message and get back to me. This was probably 6 hours ago? I thought maybe she was on vacation, but no one said anything and there should be plans in place for docs who go on vacation. So here I am, 4 days without the only relief I’ve had since being diagnosed. I’m upset. I’m frustrated. I’m at a point where I just want to cry. I JUST need the instructions changed so I can refill it. I feel miserable. I’m back to barely being able to walk, my arms can barely hold my phone….I’m exhausted.

#Spoonie #chronicillnesproblems #help

5 people are talking about this
Community Voices

Recreation

Alright, so for my birthday (which was Sunday), my husband got me concert tickets, which was the Friday before. I had been looking forward to it for months. My favorite band was playing, 4th out of 4 bands. I contacted the box office, concerned, because the venue was standing room only. Fibro Warrior here, and can’t stand very long and she directed me to ADA seating. Awesome!

I made it through 2 bands. Even sitting. I got up a couple times to watch the bands perform because I couldn’t see over the crowd but had already walked about 10 minutes from our car to the venue and then waited in line for probably 45 minutes. I was wiped. We left and I cried for about a half hour off and on because I was looking forward to this so much and had to leave because my body just sucks. My husband reassured me it was okay and we would catch them again.

I’m still learning my limits, but can anyone suggest anything? Fall is my favorite thing. Haunted houses and corn mazes and all that. And my nieces and nephew are visiting this summer and I want to do stuff with them but it makes it so hard. How do you adapt to your illness? #fibrowarrior #Spoonie #SpoonieProblems

18 people are talking about this