hippiepeacefrog 25/05/17
Last reply 9 months ago
Newly diagnosed (5/11/17) 46 year old.

Hello MSers! I’m Julie Ann (Hippie Peace Frog), I’m a 46yr old female who got diagnosed officially with MS 5/11/17. Nightmare since with my family. I am having “ah-ha” moments(as is my son) because I can literally trace this back to when I was 17 at least…maybe more. I go in on Friday 5/26/17.

I’m terrified…not for me, but my whole family, some examples was a journal entry tonight: (warning, lots of info in there, most pertains to me, but I’d like to know if there are any questions or concerns I am having that I’m not thinking of. Any and all help is appreciated. I know that this is just over a day till my neurologist appointment, but I’m hoping someone can stand to read this LONG entry lol)

My husband doesn’t know how to talk to me because of the way I’m shutting him down when I am asking for help. When I tell him I don’t understand, that’s insulting to him. I, according to him, am using my MS to abdicate responsibility for my actions and how I treat other people. And apparently I blame MS for that behavior, I say it’s not my fault, I can’t control it, it’s not my responsibility(of which I don’t remembering using all of those words, but I get it…)…but I want to hold everyone else around me for how they act around me, but I don’t want to hold myself how I act around them. He’s not holding me as responsible for my actions on his opinion, but thinks I treat him like dirt…and now he lost track of what he was trying to say because I asked him to slow down as I was typing verbatim.

Now, I am asking for help to understand something, and he’s getting frustrated with not being able to explain it to me like he used to. I keep saying it’s too complicated, I don’t understand, my brain isn’t currently working this was, and this is the mantra I get (above). I say how much I hope that he, of all people, being my husband, my partner, my teammate for 7 years would understand given his current health conditions that I have had to make adjustments to like being able to distinguish between his Type One Diabetes and him, his Cancer Chemo and him, and I’ve been doing that for a long time. I don’t hold the way he treats me, or what he says to me when his blood sugar is low or high. I also do not hold what he says or does to me against him for his cancer either. Those things remain separate in my mind, and I don’t know how to get him to the same place that I am. I say it’s my MS and it’s brought on by stress…NOPE. I say my brain isn’t working in the same way as yours currently….NOPE. I even tried that I just need time to get medication in me and continue to learn more tools to help me….NOPE. I’m just abdicating my responsibility of my actions, and quite honestly I have had NO lifelines thrown to me by anyone but my son. I know my husband is my fairytale. I’m fast losing it when we have such little time left together and this just fucking sucks! Patience is fading really fast and I’m not sure if this is just too much for HIM to handle or if I’m just CLEARLY STUPID in his opinion. I feel demeaned and misunderstood (not by my son thankfully), and I don’t know how to help him understand what I’m going through. How do I explain my brain to people to help those around me to understand what is going on behind my eyes? Maybe marriage counseling? But I know he didn’t used to treat me this way before his cancer diagnosis, and he’s been VERY passive aggressive, just as his Mom was the whole Mother’s Day weekend she unfortunately arrived in to our perfect storm), even more so since my diagnosis. I never expected to hear some of the words come out of his mouth about me and my “invisible disease” or my “new excuse”. I feel so alone and destitute and I do not know how or what to do. My husband is not the man I knew before, he would have been kind and understanding and hold my hand. He doesn’t even do that any more. I feel as if I’m losing him to my MS. And this SUCKS! Once upon a time I wished I could take his cancer from him and just die myself, and I don’t want to feel that way now. Nails are digging into walls, wolverine blades would help more…I DESPERATELY want to hang on.

My parents won’t even listen, I got off the phone with them today with a FaceTime call with my Father having my Mother in picture, the whole time we talked about my MS or my cyst in my knee or any issue I’m having, she was shaking her head and rolling her eyes; there is NO support there. I fear that is where my husband is, and I’m scared to death I’ve lost the ability to even touch his heart or mind again. My original telling of them insured ” Julie Ann, stop right there, my father had MS, and I just don’t want to hear these details as he died around her high school graduation. She even suggested I send my son away to school to keep him from my “problems” as that is what she did in entering the Airline school right after graduating so she wouldn’t have to see or hear about it except on weekends she chose to come in, and that was cowardly in my book. I told her if she wanted to compare me with her Father, and not listen to me or want to be on my team (she’s 79, Dad’s 80) or care about my future, that I was sure my Father would be happy to take me off of speaker, so your choice. I was met with silence, so I continued. It ended with them telling me I need to drop to my knees and pray for forgiveness every day because this was MY cross to bear. That ended horrible and I’m not willing to make an ass out of myself. Needless to say dealing with MS and family who don’t or won’t care is challenging. I am hoping this hasn’t gone on to long and we’re not going to get out of this rut.

I asked my husband today, if he could spend his lunch hour with me talking about questions to ask you Dr. Liebentritt, and I asked for tomorrow. I din’t get help today and I don’t know if I will tomorrow. So here goes…

-Where am I with my MS
-Is Andrew at risk having been diagnosed with some of my same issues, and experiencing some of my now known problems, as well as his reactions to high stress situations, and his scoliosis (I know they aren’t related, and no definitive results as for hereditary).
-I ordered 23andme tests for both Andrew and myself as I am adopted with NO family history, and I know more about his Dad’s history than his Dad does, plus this will also enter me in to DNA databases and my gf ordered a ancestry DNA test for me to be in even more databases in hopes of finding out now to not only what might come as far as health, but actual people that might be searching for me who then can also enlighten me to what to expect in my future. And I honestly hadn’t thought about all of this and was just willing to deal with my parents have been treating me for the last 30 years and just wanted to be a part of a family and know they are proud of me. That has changed now, and I have more priorities to my legacy…my son. He deserves better.
-I have made alarms to help remind me(things don’t always go as planned and it’s taking me longer to do my normal routine…again, stress, MS symptoms get worse
-thought I had a bladder infection or a UTI as I was having shooting pains out of my clitoris, my GYN’s nurse said she found white blood cells in my urine and needed to culture it to see if the antibiotics she was calling in for me would help it. When she called me back I had one pill left and said there was no infection. Told my husband that was probably a sign that my autoimmune disease was attacking there, just cut me down, I’m not a doctor.
-Should we test Andrew?
-How will my meds help me (I know they can arrest my symptoms and progression by UP TO 80%) and how long does it take for them to start “working”?
-We may not be able to afford our private pay insurance as there are no insurance companies willing to insure anyone privately under the Affordable Healthcare Act. If that happens or we can no longer afford our premiums (we pay almost $1k a month), how can I continue to get help?
-Do I qualify for Disability through the government? How do I start that?
-I have a temporary tag for handicapped parking that expires on the last day of august of this year. I have a reminder set up to call Dr. Bowen about this July 5th to get me a permanent one, but can that be resolved right now?
-I started crocheting again in January and that’s helped A LOT!
-I’m constantly trying to stretch my brain, using new crochet patterns, all my 50 cent words, etc… It’s evidently not enough for my family.
-My friends are so supportive, relatives are not.
-Support Groups?
-Should I take Omega3 to help?
-https://overcomingms.org/news-research/news/flaxseed-oil-associated-with-40-lower-risk-of-developing-ms/
-https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4133467/
-shift.ms website
-I used to be in IT before my back fusion in 2010, and I know I can research too much
-have joined 2 online support groups

**ALL SUGGESTIONS WELCOMED!**

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californiadreamin
9 months ago

@hippiepeacefrog That was a long post with lots of thoughts in it. Might need to respond in multiple posts because there are so many different things going on. I am sure others here will have some different comments as well but let me jot a few things down as they come to mind.

first take a deep breath. your anxiety and stress are not going to help the MS at all. You dont have to be happy about your marriage, your situation but try to not internalize the stress. So again, take frequenty deep breaths.

Cognitive issues are symptoms of MS so what you think you are experiencing could be “brain fog”. It may come and go depending on your situation. But keeping lists and taking notes is a good strategy to compensate.

Regarding medication, I would see if you are officially dianogsed to get started with something right away. Consider something that doesnt have a rebound effect (so avoid Gilyena) if for some reason you have to come off the medication later. Once you are started on a DMT there are options for financial assistance so you dont have to stop medication so dont not start just because of what might happen.

You quoted a site from overcomingms. My wife follows OMS carefully. I highly recommend following it. It is full of useful information that covers more then just MS but the entire program is helpful for thinking about your mental state as well as some options for your son. In my family we are using flaxseed and vitamin D supplementation for my kids. We live in California so we probably have more sun then most (but my wife grew up in WA so she didnt have as much).

Please note regarding your comments on symptoms and progression. The medications are typically different. There are medicines for slowing your relapses, progression and other MS related issues. Then there are medinces to help you cope with symptoms on damage thats already been done. Over time these symptoms can get worse or better as well.

What do you MRI’s show? Were you tested for JCV?

So currently i would suggest getting a copy of the overcoming multiple sclerosis book from amazon and just start reading it. It has lots of good information with an overall view of the medications and lifestyle changes available and might help you process through the MS side of things.

Regarding other things you mentioned, my wife and I are about the same age as you are. It seems like your family has had a lot going on and I am sure each of the things you have had to deal with has taken some adjustment. One thing my wife and I started doing after her diagnosis was just to find a time slot where we could relax and watch some funny sitcom. Is there something you and your husband could do to just have a pleasant time together just to enjoy being with each other? A 30 minute episode of something you can watch just to laugh and relax? My guess is things took a while to get this way, it will take a while to change. Maybe you can find some small steps to move in the right direction?


hippiepeacefrog
9 months ago

We are trying to continue to learn, but it’s very stressful when one doesn’t believe my doctor and my brain MRI, and the report…all I can say is I’m anxiously waiting on the 26tj, when they can hear it from a doctor’s mouth.

Your insight was very appreciated. I’m old IT, so I know how detrimental I can be. I’ve read legit sites recommended right before my spinal tap. I’ve been able to trace my symptoms to age 17 😱 I’m stronger than I ever knew. I know that because of the detrimental turmoil that is surrounding me, it makes my symptoms flaire like a firework. I’ve learned a lot. Thank you kindly for the other revcendations.

My GP is the one that read my diagnosis to me on the phone, but I already knew as the antithesis of this journey started with me not feeling anything from my ribs down, and it was time to dig, because I needed to be at 100% to best help my hubby…I have so much bright white areas lit up and many lesions of black of which is past damage. I know it’s because of my son’s Aspergers diagnosis that I had to help him make habits, which in turn also became mine.

I can definitively say that his original cancer diagnosis was the antithesis of it being so prevelant, but the depression, anxiety, panic attacks, etc..,could have all been mistaken for either, and MS wasn’t even on our radar! Thanks for the immediate response and reading my novel…and doing the same again! Got Day Ome (apple onlyπŸ˜”), and I highly recommend it!$4.99


merfield
9 months ago

It sounds to me that all of you – husband, son & family – are going through one hell of a lot right now. I say this because it’s been similar here ( we are in the uk) and only now has my partner fully accepted my condition. We are 78 this year and until now I’ve been the one to ‘run’ our lives, cook, clean, make social and holiday arrangements, etc and he has been free to do as he wants – mainly to be an artist. It’s taken a long long period of adjustment for us both. His kids stear clear, my daughter has a business to run but is in phone contact. I really feel for you. There’s such a lot to come to terms with for you all, and to make it more difficult it’s not a constant but a changing condition plus on the outside, to anyone else, we look pretty much ‘normal’. Are your husband and family well informed about MS, it’s different forms, various symptoms, and the aspects we MSers can’t control…..
Please take heart that with the passage of time you WILL all ‘align yourselves with the circumstances’, as my partner says ( borrowed from a previous US President, I think ). I most sincerely hope so…..xx


hippiepeacefrog
9 months ago

@merfield

Thank you for your empathy…I know I’m in the right place here to ask question and talk to a broader audience that I will have here in Omaha, Nebraska.

We really are going through so very much. Back fusion, fighting for disability from back surgery, moving 2 years ago, to my husband’s diagnosis of stage 4 lung cancer last year January, and suffice it to say, that was “D Day.” Immediately after I got the passive aggression of “you’re not a doctor” from both my husband and son, I’ve made changes to try and help…isolation, crocheting, cooking, bought an oil infused, incense, anything I could think to keep me positive as I wasn’t receiving help from my family.

Today is our appointment with my neurologist, 🀞🏻 I hope hearing thing from her will help them start to come to grips.

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