Im just gonna jump right in... Last yr, Jan my mother was dxd'd with Pemphagus. 1 ina million they say... Dad says your mom doesnt derserve this... I say why, she ASKED for it literally!! ( not out loud, cause im gonna go to h*ll) Anyway, shes been in and out of the hospital, with complications. In and out of rehab, and instead of getting MORE help at home, to help my Dad out... She cuts it. Dads 80 now,, HE needs the help! Life continues? Always...
My middle daughter has moved in with me, so she can earn her Medical Coding Certificate,! God Bless Her, shes been such a help to me!!
Guess its my turn, things arent looking so good. They have finally dxd me with T1 Black Hole MS... and I just had my last O infusion. I had another really bad pain reaction. My Neuro is going to put me back on Copaxone... Why, you ask? Cause its all l can take!! Remember the last time l was on Copaxone? I ended up with Black Holes in my brain. Yes, its a thing... He knows this, I know this. He is sending me to Neuropallitive Care, I have my 1st appt in bout 2 wks. For what? To tell me l have Black Hole MS? That this s*it is going to kill me? Pretty sure l get it! Pretty Sure it just pisses me the F off! MS has me killed twice, which puts me at clinically dead 4 times my life time now, and have been sent back here Every... Single... Time...!! Why? No idea! Lol!
Im not giving up, Why? Cause my daddy didnt raise no quitter!
Believe me when I say lm Greatful for my Life! I brought to the world 3 Beautiful, ohh sooo Smart Daughters!
So now you know what l know, Except This! I really do think about you guys alot! Always saying prays for yall. Its just so hard for me post, and answer everyone. Its overwhelming AND keep everyone inline? Are you kidding me? Lolol lm sorry, its just so hard for me to remember everything.
*Ina a country that has seemed to have lost ALL of its Common Sense, Common Decentcey, and Common Respect For AnyOne or AnyThing... Remember This !*
Be Kind to each other!
Help one another!
Love one another!
Because in the end, * We All Bleed Red*
If your new here.. you found the most wonderful caring place to be! Dont over think your MS its gonna be what its going to be, the rollercoaster ride of your life... just breathe!
Jes🤗💕🌠
Fancy thank you for being here for me!
Sue.. ~Yellow and Green Hue, Neils Wings Always Surround You~
Royce? Be more personable and welcoming.. your welcome lol
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Jesmcd2
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Oh, my friend Jes. What can I say? I’m so happy to hear from you! We miss you. I think about you so often, but I don’t want to bother you. I know you don’t feel well and you have a lot going on in your life. But please know that I love you and I think of you often. I’m so glad that your daughter is there with you, that is so special. Sending you lots of gentle hugs 🤗, Kelly xxx
Oh Jes 😭 I'm so sorry for the terrible news. I'm glad to hear that your daughter is with you now 🥰 We will be here however or whenever you need, no worries about replies. Your presence is missed and I think of you often.
I know you're going to ask...they are good! Lots of big messes and dance parties, disney tune sing a longs (Frozen is a big favorite), and they are still sweet snugglers 🥰 School starts soon 😵💫
Jes, even though I knew what's going on, it pains me so much to hear you talk about it. Putting it in writing somehow makes it official. I refuse to believe I'm not going to have my best friend around to talk to whenever I want to for years and years to come. So here's the deal. I'm going to send positive vibes your way and talk to you as often as possible. I'm going to tell you every stupid and slightly off color joke I can find and think of to make you smile and get your mind off of this stupid diagnosis. Then i'm going to do some research of my own on the black hole MS and talk to as many neurologists as I can about the diagnosis. If new treatments or DMTs come out or are talked about, i'm going to dig into them to see if their risk of interacting with the JC virus is essentially non-existent. When all those ideas are exhausted, I'll look for more ideas to explore to conquer this possible diagnosis of black hole MS. And finally, I'll pray and pray and pray like h**l for a miracle to come for the millions of people suffering from MS and a cure to be discovered. I'll love you to the cows home! And since we don't own any cows, thats gonna be a long, long, long time.🐄🐄🐄🤗💝. Fancy59.
Jes, it is so good to hear from you. I am so sorry that you are having to deal with all this crap in your life. I have lived most of my adult life with MS, and unless there is a miracle, I will live the rest of it with MS. Throughout the past more years than many of you have reached yet, I have chosen to live my life the way I want to, rather than the way someone who sees me for 30 minutes every 6 months thinks I should live. I honestly don't think I'm any worse off for doing it this way. I know I am much more at peace with myself and my life, as it is. I'm still playing in the dirt that I love, nurturing the animals who need me, and talking with the few people who truly care about me, and who know who I am. YOU ARE A STRONG WOMAN, Jes, you can do this, and you can do it YOUR way.🤗🙏❤️ May the Angels Watch over you, my friend.
W OW!!! I'm so sorry to hear about all your problems. It sort of puts my troubles in their place, being as they are nothing in comparison to yours. Prayers and best wishes to you. Keep persevering!
I had to look up a couple things you said. That's never a good thing as it usually means nothing good. I am so sorry to hear of your troubles. We love you and I pray for the best for you.
@Jesmcd2. You know you have always been here for us, now it’s our turn for all of us to try to be there for you!! I will try to be better &checkin on you often. CalfeeChick
Jesmcd2 was just wondering how you were! Sorry it’s such a 💩shoot 😞
I have been told I have black holes too but never heard of it being an official dx just told it confirms I’ve had ms for a while. Not sure what to make of them 🤷♀️
Glad you have your daughter around. It’s nice to have someone there.
I was just thinking about you Jesmcd2 . Sorry to learn of your troubles. {{{hugs}}}. I come here sporadically these days and thought I must have missed one of your posts. I’m so glad your daughter is with you and is helping you. I hope the neuropalitive care helps your quality of life. I too have black holes and am on life #5. Your presence is missed but it’s time to focus on you! 🌻
'Wow...so real, so honest, and still so sweet! Yes-sweet! Gosh, and I've been flipping out about my crazy UTI problems! Yes, I'm ashamed, embarrassed, and my mama dresses me 😁 funny!
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Primary Progressive MS
Newly dx'd. 
Nuedexta
