Cindy M. Lupi

@cmlupi
Community Voices

So Much To Say But I Can't

Caught in a web of emotional pain and heartache that I wouldn't wish upon my worst enemy. The depression and anxiety have spiraled out of control, I don't even know who I am anymore. PTSD added to the mix. All I'm trying to do is keep my head above the water for my children. I can't imagine living my life without my child. The future is so unknown, the only sure thing is that he will continue to get worse. I have so much to say. So many questions with no answers. But mainly just , why? Why my sweet little boy? Why the most purest, gentlest, loving, caring, compassionate human beings out there? How many battles can one person possibly fight and still be able to function decently when the sadness takes over, the anxiety cripples you and when almost everything triggers your PTSD after a certain time each day? When last night was the first time in four months that you have showered, and you get accused of being a wh**e for doing so. How much abuse can one withstand before they end up taking their own lives? How much bullying and harassment? How many words can one hold in until they end up screaming for someone to listen? To understand? So much to say but I can't find the words, and if I did find the words there would be a character limit. So is it all even worth it in the end? Are there answers? Hope on the horizon? Change? Any escape from the avalanche of invisible illness that crushes you daily? Is it even there or real if it can not be seen by anybody else but you? So much to say but nothing ever comes out right when you have the chance to on this forever character restricted blank canvas we call life... #Depression #Anxiety #PTSD #InvisibleIllness #Lupus #Fibromyalgia

1 person is talking about this
Community Voices

My Son's Diagnosis #Gm1Gangliosidosis

It's been a while since I've written anything on here... I was actually reminded today that I had a thread on The Mighty, and it definitely ended up being a blessing to me. I need this group now more than ever. After seven years of searching for answers as to why my little boy kept regressing, we finally got an answer on November 7th, 2019. He does not have Autism, as we have always suspected the entire time. He was diagnosed with GM1 Gangliosidosis Type 2
Juvenile. A rare and fatal genetic disorder with no known cures or treatments at this time. There are no words to describe how devastating the seconds, minutes and hours were after that initial phone call. The days, weeks, and now months are extremely painful. They tell you to hold your child tight. Make many memories. Always keep a smile on your face for your child and always do your best to make and keep them happy. It's nearly impossible, as I find myself breaking down daily behind the bathroom door or with my face burried in a pillow at night so my sobs don't wake him up. It's hard. Very hard. But I have accomplished a lot for my son since then and am always trying to find ways to make him happy, comfortable and make great memories. Then Covid-19 stepped in and tore all the progress we were making down. Stripped him of his much needed schooling, services and therapies. My son has regressed so much physically since March, even with distance therapies through Zoom and everyday simple exercises and massage that I was taught how to do with him. He does not have a Gait Trainer at home or a Sensory Play Gym. No 1:1 nurse or Professional Therapists. I will write more about that later, in another post. I am mad at myself for pushing for answers. I am mad at myself for not being able to be the teacher, nurse, therapist, doctor or other adults he needs in his daily life right now. I am angry with myself for not having an early schedule for him anymore and mad at myself for not being able to know what's bothering him right away when he is off. There are so many reasons to be angry but the greatest reason is why I am angry, is that I am not able to save my little boy. The little boy I carried in my womb for 9 months. The little boy who is SO determined to walk alone on his own again and don't understand why he can't. The little boy that despite his pain and diagnosis, has a huge, beautiful smile on his face everyday. Who's laugh is contagious and harmonious, and who's cuddles are the purest of the pure. I'm ANGRY. I'm angry that life is so unfair to those so undeserving. I'm angry that I pushed for an answer, but at least we now know and can better help him medically. The first ever Gene Therapy Trial for GM1 started recruiting just a few months before my son's diagnosis in 2019. So at least there is some hope now, where there wasn't any at the beginning of 2019. Sadly, he did not meet the criteria. How do I forgive myself for pushing? How do I stop being angry with me? 😔 #gm1 #Gm1Gangliosidosis

Community Voices

It has been a while... #Depression #ChronicPain #autismmom

Yes, it has been a while since I have posted and so much has been going on. I feel like I have been beaten down to the core and I am having a hard time out if this funk. First, my son's EEG came back abnormal. He was having epileptic activity and has been put on Keppra. The first week of this medication was tourture. My son was not my "son". He got angry. Very angry. He wouldn't eat. He was dizzy and off balance. Thank goodness the side effects are long gone. We are waiting for approval to have a Video EEG done now. He has an orthopedic appointment this week for an abnormal hip X-ray and on the 18th he has two MRIs with sedation scheduled. His brain and his lumbar spine. I am almost positive he has MS 😟 So, with him alone, it has been awful. I had to put myself aside for a bit to take care of him and I have no-showed rheumatology, Primary Care for my flu shot and have put off finding a Pain Management Doctor. I have lost weight, have been in excruciating pain, my neuropathy is out of control, and mentally I am at the bottom of the barrel. With the Holidays is full force, I feel dead inside and out. I feel like I have no support system and I have no help with my son. I actually fell off of his bus stairs last week, I had right leg paralysis from the knee down and it happened while I was removing him from the bus... Embarrassing to say the least and it put my son in danger as I have to lift and carry him...I feel like the world is falling in on me. I am off my depression and anxiety medication because I was unable to go back to the psychiatrist for refills. Christmas? I don't want a Christmas. I worked 13 years and gave both of my kids wonderful Christmas's. This year, it may as well just be vacant in my home because I have no income and I have not got a denial or an award letter from SSD yet and I saw the judge 3 months ago...My son I'm so excited this year though, for the first time ever....So I did put a tree up and decorate. I will figure out the rest for him, to make him happy. Somehow. Through all of this I know I can't be alone in the world. I know there are families and people worse off. I have to keep reminding myself to appreciate what I do have. Work with what I have... Somehow everything rule can figure it out and be back on track I pray. I fell so behind on my medical care I don't think I will ever be able to catch up on it...Ugh. I wish I could be positive today for everybody, but these last few months have been so hard. I hope you are all doing well though...Don't give up my Mighty friends ❤️
#Depression #Anxiety #firomyalgia #ChronicPain #Lupus #Neuropathy #Autism #ChronicIllness

Community Voices

How do you stay so strong? I don't know how you do it. I envy you. If I was in your shoes I couldn't do what you do, or deal with what you do. How do you stay so long? Why? Why do you stay? It wouldn't be me.
Those are some of the "encouraging" words I hear from family and "friends" when I need to talk about something going on in my life. Not too encouraging though, if you ask me...I don't feel strong, I am just doing what I have to do for myself, children and family. Do not envy me. You have healthy children, you are healthy and have a healthy relationship. Please do not say you envy me. How do you stay so long? I've invested 23 years of my life to this man, what kind of person would I be if I gave up now?
Strength. I might be strong, but there are days I don't even know how I got through alive! I sure don't feel strong in those moments. And just because I'm deemed "Strong", don't mean I'm not deserving of a hug every once in awhile, or a shoulder to cry on, or support system...
Being strong gets me through life. It is my blessing. It is also my curse, because I get treated inhumane buy those who are supposed to love and help me...
#Lupus #Fibromyalgia #DegenerativeDiscDisease #PeripheralNeuropathy #BPD #Depression #Anxiety #ChronicPain #ChronicIllness #MentalHealth #Autism #autismmom

2 people are talking about this
Community Voices

When I say "I'm tired", it means so much more than just being "tired". I am physically tired, meaning my body can't take one more step forward or I'm going to collapse "tired". I am mentally exhausted. Being mentally "tired" means the depression and anxiety have taken over and I can not think straight or remember anything, so please don't ask me to think or answer questions. I am sleepy "tired" but it's more like tired times ten. I yawn all day. I could nap all day if I had a chance to, bit would never feel well rested. I am sleepy tired to the point that when I lay down at night, I will fall asleep for 5 minutes, then wake up and feel like I slept for days. I won't fall back to sleep, but I will lay in bed the rest of the night staring at black walls, feeling anxious and possibly fall in and out of sleep for a few minutes at a time throughout the night until my alarm goes off...I am never well rested. I am always tired beyond explanation...So when I say I'm tired, please understand, it's more than tired. It's an ache in my whole body, right through to the core of my bones and center of my brain "tired". Be patient with me, please...
#Lupus #Fibromyalgia #DegenerativeDiscDisease #Depression #Anxiety #BorderlinePersonalityDisorder #ChronicPain #ChronicIllness #MentalHealth

45 people are talking about this
Community Voices

When I say "I'm tired", it means so much more than just being "tired". I am physically tired, meaning my body can't take one more step forward or I'm going to collapse "tired". I am mentally exhausted. Being mentally "tired" means the depression and anxiety have taken over and I can not think straight or remember anything, so please don't ask me to think or answer questions. I am sleepy "tired" but it's more like tired times ten. I yawn all day. I could nap all day if I had a chance to, bit would never feel well rested. I am sleepy tired to the point that when I lay down at night, I will fall asleep for 5 minutes, then wake up and feel like I slept for days. I won't fall back to sleep, but I will lay in bed the rest of the night staring at black walls, feeling anxious and possibly fall in and out of sleep for a few minutes at a time throughout the night until my alarm goes off...I am never well rested. I am always tired beyond explanation...So when I say I'm tired, please understand, it's more than tired. It's an ache in my whole body, right through to the core of my bones and center of my brain "tired". Be patient with me, please...
#Lupus #Fibromyalgia #DegenerativeDiscDisease #Depression #Anxiety #BorderlinePersonalityDisorder #ChronicPain #ChronicIllness #MentalHealth

45 people are talking about this
Community Voices

When I say "I'm tired", it means so much more than just being "tired". I am physically tired, meaning my body can't take one more step forward or I'm going to collapse "tired". I am mentally exhausted. Being mentally "tired" means the depression and anxiety have taken over and I can not think straight or remember anything, so please don't ask me to think or answer questions. I am sleepy "tired" but it's more like tired times ten. I yawn all day. I could nap all day if I had a chance to, bit would never feel well rested. I am sleepy tired to the point that when I lay down at night, I will fall asleep for 5 minutes, then wake up and feel like I slept for days. I won't fall back to sleep, but I will lay in bed the rest of the night staring at black walls, feeling anxious and possibly fall in and out of sleep for a few minutes at a time throughout the night until my alarm goes off...I am never well rested. I am always tired beyond explanation...So when I say I'm tired, please understand, it's more than tired. It's an ache in my whole body, right through to the core of my bones and center of my brain "tired". Be patient with me, please...
#Lupus #Fibromyalgia #DegenerativeDiscDisease #Depression #Anxiety #BorderlinePersonalityDisorder #ChronicPain #ChronicIllness #MentalHealth

45 people are talking about this
Community Voices

When I say "I'm tired", it means so much more than just being "tired". I am physically tired, meaning my body can't take one more step forward or I'm going to collapse "tired". I am mentally exhausted. Being mentally "tired" means the depression and anxiety have taken over and I can not think straight or remember anything, so please don't ask me to think or answer questions. I am sleepy "tired" but it's more like tired times ten. I yawn all day. I could nap all day if I had a chance to, bit would never feel well rested. I am sleepy tired to the point that when I lay down at night, I will fall asleep for 5 minutes, then wake up and feel like I slept for days. I won't fall back to sleep, but I will lay in bed the rest of the night staring at black walls, feeling anxious and possibly fall in and out of sleep for a few minutes at a time throughout the night until my alarm goes off...I am never well rested. I am always tired beyond explanation...So when I say I'm tired, please understand, it's more than tired. It's an ache in my whole body, right through to the core of my bones and center of my brain "tired". Be patient with me, please...
#Lupus #Fibromyalgia #DegenerativeDiscDisease #Depression #Anxiety #BorderlinePersonalityDisorder #ChronicPain #ChronicIllness #MentalHealth

45 people are talking about this
Community Voices

When I say "I'm tired", it means so much more than just being "tired". I am physically tired, meaning my body can't take one more step forward or I'm going to collapse "tired". I am mentally exhausted. Being mentally "tired" means the depression and anxiety have taken over and I can not think straight or remember anything, so please don't ask me to think or answer questions. I am sleepy "tired" but it's more like tired times ten. I yawn all day. I could nap all day if I had a chance to, bit would never feel well rested. I am sleepy tired to the point that when I lay down at night, I will fall asleep for 5 minutes, then wake up and feel like I slept for days. I won't fall back to sleep, but I will lay in bed the rest of the night staring at black walls, feeling anxious and possibly fall in and out of sleep for a few minutes at a time throughout the night until my alarm goes off...I am never well rested. I am always tired beyond explanation...So when I say I'm tired, please understand, it's more than tired. It's an ache in my whole body, right through to the core of my bones and center of my brain "tired". Be patient with me, please...
#Lupus #Fibromyalgia #DegenerativeDiscDisease #Depression #Anxiety #BorderlinePersonalityDisorder #ChronicPain #ChronicIllness #MentalHealth

45 people are talking about this
Community Voices

When I say "I'm tired", it means so much more than just being "tired". I am physically tired, meaning my body can't take one more step forward or I'm going to collapse "tired". I am mentally exhausted. Being mentally "tired" means the depression and anxiety have taken over and I can not think straight or remember anything, so please don't ask me to think or answer questions. I am sleepy "tired" but it's more like tired times ten. I yawn all day. I could nap all day if I had a chance to, bit would never feel well rested. I am sleepy tired to the point that when I lay down at night, I will fall asleep for 5 minutes, then wake up and feel like I slept for days. I won't fall back to sleep, but I will lay in bed the rest of the night staring at black walls, feeling anxious and possibly fall in and out of sleep for a few minutes at a time throughout the night until my alarm goes off...I am never well rested. I am always tired beyond explanation...So when I say I'm tired, please understand, it's more than tired. It's an ache in my whole body, right through to the core of my bones and center of my brain "tired". Be patient with me, please...
#Lupus #Fibromyalgia #DegenerativeDiscDisease #Depression #Anxiety #BorderlinePersonalityDisorder #ChronicPain #ChronicIllness #MentalHealth

45 people are talking about this