I looked for a smoldering multiple myeloma group, but it doesn't exist. I am at 20% and IGI. Doing Bloodwork at 12 wk intervals and have had every inch of my body scanned. It's not real yet but lurking like a tsunami. My adult kids are freaking out
1 reaction Hi, my name is Jaky49. I'm here because I'm having another bad flaire. Two months now. I am so tired and weak. My ribs and sternum are in pain along with my legs and feet with nuropathy. I had multiple myeloma before and all the symptoms are alike, so I fight the fear that it's coming back, which is doubtful. But going through the treatment for that is what brought on the fibro. I have felt bad for 15 years and I fight being sad about not being the person I was. I guess I really just need to know I'm not lazy and someone to know how I feel.
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Hi, my name is Karyn Almendarez. I'm here because I have Multiple Myeloma Cancer and I want to learn new self-care techniques to help depression, anxiety, and my cancer symptoms. I also want to teach others with chronic illnesses how to love themselves and take the best care possible of their mental, emotional, and spiritual health.
Hi, my name is BarefootRob. I'm here because my wife has been fighting Multiple Myeloma since she was diagnosed in the fall of 2019. She is having a tough time dealing with this, and being her primary care giver, I could use as much help as I can!
#CheckingIn
So this past week has been a wild one. So many things occurred that were both positive & negative. I had my first appointment at the Mayo Clinic & it went very well. I was so happy…
But then last night my mom told me something that broke my heart. Apparently she has been diagnosed with Multiple Myeloma. I was shocked. Apparently she’s only told my dad & grandma, & she wasn’t even going to tell me, but it just “came up.” My mom & I are just now getting on a better page. I’ve been afraid of my mom most of my life. The emotional abuse has been horrible & although we’re better than we were, I still feel uncomfortable around her.
I can’t imagine what the future is going to hold, but I’m scared.
Sorry if this seems negative 🫤
#MultipleMyeloma #Anxiety #Depression #Fear #BorderlinePersonalityDisorder #Relationships
I am feeling overwhelmed today. I have ran errands all day. I come home and want to have a little while to just relax. This NEVER happens. Everyone is so dependent on me to take care of their needs. My husband has Multiple Myeloma Cancer. He sleeps so much. He wakes up, and is ready for me to make something to eat. I am happy to do this. I just get so tired. I do have 4 dogs, that I love and adore. My 4 legged babies bring joy to my life. If I could have one wish, right now, it would be for me to have just one day where I wouldn’t have to take care of anyone but myself. In my situation a wish like this would be so hard to get! I am still thankful that I am able to do what I do.
I have a relative with MM. It was caught mid 2020, after a trip to the hospital. The last time I had saw them, they seemed relatively healthy in January 2020. Over the few months, they'd lost a lot of weight and well, it wasn't really a good scenario.
Fast forward, they're doing better. Down to only one doctor appointment a month and their body isn't hurting as much. The doctor gave them one instruction (outside of taking medicine and prescriptions) and that was to simply...eat. That's it. Eat.
However, they're from that generation that associates being skinny with healthy. They've had an eating disorder/body dysmorphia all my life, whether I knew it or not. They've always been obsessed with weight loss, so much so that they'd lie to their doctors about it.
They'd wear extra leggings and heavy boots so it looked like they were bigger than they were, only to smirk and smile at the praise and shed the layers when they got home. Pair that with the fact that they are so stubborn and proud they won't listen to anything anyone says, and well. What can you do?
Their numbers are going back up, and part of it is due to the fact that they're still under the weight the doctor wants them to be, but they still refuse to do what the doctor says. Add in a bunch of undiagnosed mental health issues, unresolved grief and trauma, etc., it's just sort of a mess right now.
I had a dream last night where I got 12 hours with them in my childhood mall, before they got sick. Before they became the person they emotionally are today. not often does a dream really destroy me, but after an already chaotic emotionally and physically unstable week I'm finding myself openly grieving the relative I once had who was my best friend.
You can't help someone who won't help themselves, and at the end of the day *they're* the one going through MM and the infusions and the doctor visits. It just hurts because it feels like even though they've technically gotten a lot better, I'm still watching them die slowly.
Not looking for advice. I notice there aren't any other posts in this group, so I figured I'd start it off with my own story. It's hard having a connection to MM, especially seeing how up and down it can be.
I don't quite know how to end this, other than saying I really hope I have better dreams tonight.
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I’m a 19-year-old college advocate hoping to reach the FDA to promote the accelerate of cures/vaccines for incurable diseases. Please help by signing the petition and promoting it to your social media if you agree with my petition. We can start by passing the Promising Pathway Act Bill.
For more information read my petition…
www.change.org/p/janet-woodcock-m-d-accelerate-the-developme...
iamals.org/action/promising-pathway-act
** TAKES LESS THAN 3 MINS COMBINED TO COMPLETE **
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Been in the process of a diagnoses for 2.5 years. Rheum has put possible #UndifferentiatedConnectiveTissueDisease #Lupus #Scleroderma #Myositis #mixedconnectivetissuedisease
I have esophageal dismotility and #SmallFiberNeuropathy and a high ANA but no specific ana markers. What has my rheum stumped is I don't have an elevated CRP or SeD rate, but I do have joint effusion on the xrays and I'm losing hair and have huge puffs under my eyes all the time with sun rash. No lupus markers though. When it gets bad I have pain in my groin and armpits and i can feel lymph nodes that aren't very big like maybe marble sized but they are tender and achey. Of course I get nervous they are missing something like cancer. I have been checked twice for multiple myeloma and it's not that. Wondering if anyone else had this lymph pain? I have neurological issues as well so it has confused the doctors. First they thought myasthenia Gravis and then MS but my scan was good 2.5 years ago. I've had EMG etc. I have a lot of muscle twitches like zaps and buzzing along with nerve pain and chronic weakness. They tried getting me into Mayo but I was denied charity. I feel like they have no idea what is really going on with me and it would be nice to know others have similar symptoms and mine aren't so bizarre. Sorry for the long rant. Photos for reference lol no shame in my autoimmune game.
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