Is it possible to get over the humiliation of this

[pennstater]

I do not consider quitting my job and being a burden on my boyfriend “living life”. And that is not even my vision of worst case scenario. That is middle of the road scenario for me. For me there is no “adapting” at work. I am either able to do my job or I have to go on disability. That though terrifies me. I just do NOT understand how people can just accept this and not be depressed and angry. If I ever feel the slightest bit of happiness I see people who don’t have this curse and I am slapped back down to my dark hole of despair.

I just really hope my new neurologist can answer some of my questions. I think being left to Dr google for the past year has made things 100 times worse. But when I asked my old neurologist a question the response was “will discuss at next appointment” then he was in and out in 5 minutes. Not exactly being warm and caring.

I worked hard, saved, obtained independent LTD, I am not a financial burden on anyone. And even if I didn't have the above, my husband reassured me he would not consider having to support me a burden. It is called love. Your boyfriend may not feel it is a burden, but it may be your perception. Would you consider him a burden if the situation was reversed? It is an important conversation to have.

As for your doctor, I am really sorry that was your experience. That is horrible. I am glad you are seeing another doctor. But if the neuro does not give you the time you need, ask how he/she handles Q&A. If there isn't something satisfactory, don't give up. Keep trying new neuros until you find one that allows time for questions. They are out there. I lucked out on 2 of the 4 neuros I saw.

[Daisycat]

My job has amazing LTD but that to me isn't the point. I am not worried about being a financial burden to him. I am worried about him having to be my caretaker. That is not how I envisioned our life together and I am pretty sure he didn't either. We have discussed this and he said he wouldn't leave me even if things get to what I imagine , but I still feel it is unfair to him. And if it was persevered I wouldn't leave him, but I know him and he is 100 times more independent than I am and I honestly think he would be handling this worse than I am. ( if you can believe that)

I have an appointment scheduled with a second neuro about 3 weeks after my appointment with my new one. This way if the new one is horrible I'll have a second option.

And TY for that list. I'll take a look at it.

[sarabeach123]

but I think you are one of the posters here that is still able to work and that gives me hope that I might be able to make it more than 10 years.
.

Daisy - you are making uninformed decisions. Why would you assume most of us aren't able to work full time? This tendency to jump to the worst case scenario is what is fueling your anxiety and depression. I work full time and have been diagnosed for 3 years now and have very minimal symptoms. I know 2 other people personally with MS who have had MS for over 10 years who work full time, have families and are healthy. I know one other person personally with MS who is happily retired but had a long career with MS. She retired when she was 60, not out of necessity, but because she wanted to.

The reality of the situation is that people who seek out advice on message boards generally need that support. The people who are living their lives with minimal symptoms aren't posting on these message boards. When you read about problems that people are having and think the worst, you aren't taking into account all the people who aren't posting about all the problems they aren't having. You recovered completely from your first flare up. This indicates an excellent prognosis.

I am here because I feel the need to help anyone who I can, because I was helped when I was at my lowest and I know lots of people are here on the board for the same reason, to try to support others who need help.

Where do you live? I've seen other posters talk about what states/ cities they live in and get advice about the best, most caring neuros in their areas. I've asked several times about what kind of neuro you are seeing, but I'm not sure that you answered, or maybe I missed it. Is your new neuro a specialist in MS? If not, find sometime else.

Lots of us are angry. Lots of us are depressed. Lots of us have been in the past, but have worked through those issues. I was so depressed and angry, especially around the one year mark. I am sure people in my life didn't recognize how much I was struggling. Just because you don't see it, doesn't mean it's not happening. It's like the facade that people put up on facebook. Just because you see everyone looking happy and beautiful doesn't mean their lives are perfect!

I SO sympathize with your anger. I remember watching inspirational stories about people overcoming their issues with sickness, poverty, tragedies and instead of inspiring me, it just made me so angry. I thought "what about all of us who aren't doing so well". Fortunately, I can now look back on those times and realize what a dark place I was in. I hope you'll be able to look back and reflect as well.

The best thing you could do is to look at yourself and your opinions about MS and have enough courage to say "maybe I'm wrong." People with uninformed opinions about MS are the reason I don't tell people about my diagnosis. I don't have the patience to deal with people who aren't willing to try to understand the reality of the situation and just want to stay misinformed.

[Daisycat]

I’ve seen many posters here saying they had to quit there job. It depresses me how many. And I get for now I have a good prognosis but what about 5 years from now? I can’t ever go back to a hospital. . I live in Texas and I’m not 100% sure about his knowledge. His bio says he is but that doesn’t mean anything. . And today is the one year anniversary of my “death” of my former life. It just makes me so angry that I’ll never be anything I wanted to. And honestly I can’t leave my job anyway ever because I wouldn’t be eligible for Ltd now. Thankfully I got it when I was happy and oblivious. At least with the company we have. We had to fill out a health survey thing. . And this disease obviously causes issues or else we wouldn’t need drs or medicine or anything else there is. It’s not all pixie dust and puppy dogs. It sucks thinking everything that happens to me now is related to this

[Mamabug]

Some of your comments:

I do not see how anyone can tell everyone like this is no big deal.

I know I say I will never be happy again (which is true).

I am so so so so angry that my future has been stolen from me

And BTW I do think I have made some “positive” changes. I am working to lose 15-25 pounds, walking my dog again (when it’s not 100 degrees) , working on my “bucket list” (mostly fun and cool things I have always wanted to do)…. My 16 year old cousin has a bucket list and she is 100% healthy so I do not see why it is offensive that I have one.

Hmmm. Did anyone say it was no big deal? If you read old threads, its very common for us to struggle with when to disclose, who to tell, etc.

And hmmm.our futures were changed too. And many of us were disappointed. Many of us were mad. We all grieved our losses in our own ways. And we decided not to wallow forever. We moved on and had a changed, but still happy life.

And hmmm. Your bucket list includes mostly fun and cool stuff. And you're working on it. But you'll never be happy again? Both can't be true. Fun and cool stuff makes us happy. Maybe you are happier, sometimes, than you realize. Maybe there is more hope for future happiness than you acknowledge.

You can still be angry. Sometimes life isn't fair. But take some breaks from your anger to start your thankfulness journal. Take a break from your anger to nurture your relationship with your boyfriend.

Yes, you are making some positive changes. Use that momentum to continue to move yourself forward and not stay stuck.

Grant me the serenity to accept the things I cannot change,
the courage to change the things I can,
And the wisdom to know the difference.

[Jules A]

I'm coming up on my 30 years and still gardening and helping watch my toddler grandchild, doing yoga and getting exercise according to my abilities, among other important things. I'm slowing down, but then I'm almost 70 yrs old! It's been a good ride~~~

Thank you for sharing this! I am praying the rest of us share your good fortune also.

[Jules A]

I am also furious that I have not had a real Dr to help me with anything through this and it bugs me when people tell me here my medicine I am using is not good. I am sorry but I CANNOT have immune suppression or medicine with insane copay. Those two things right there know out a lot of the newer more effective medicines.

I suspect you have unrealistic expectations from your neurologist but regardless I'm still on Copaxone too. It doesn't bug me when people make comments about it. If they are thoughtful enough to add a reputable resource I read it, consider the information and am appreciative. If they are like some who have good intentions but couldn't interpret an abstract if their neuro read it to them I just ignore their anecdotal comments.

I chose Copaxone years ago because of the lack of side effects and immunosuppression. Other than the craters in my thighs, which don't need to be on display in my 50s anyway, it has been very well tolerated and very likely helpful. My MS Specialist from one of the top hospitals in the world has recommended I don't change because for whatever reason it seems to be working for me.

Personally I prefer something that has been utilized for years and hasn't been shown to either be the flavor of the month that doesn't hold up over time or a medication with significant adverse events that are discovered in the first years of roll out.

[Daisycat]

I don’t think expecting my dr to spend more than 5 minutes with me as unrealistic or expecting an answer to something that is related to my health as unrealistic. (This place has a patient portal just for that). . Copaxone was the only one that my neurologist said meet all my needs so since it’s really hard when you can’t have immune suppression or a few other things. But it seems like it worked ok over the past year. . I’m just ready for midnight. The past three September 21 have been terrible for me and I’m worried that something can still happen. Maybe my ear hurting Will be the worst thing but I knew that was going to happen.

[Temagami]

Daisycat,

Your self-worth is not encapsulated by your job/profession. Your humanity is the source of your self-worth. MS has yet to rob anyone of their humanity. By the time I had to quit my job, I did not miss it because of the fatigue, flares and cog-fog. With a new DMT, not working, 14 extra hours of sleep a week, and less stress, no flares since 10/16. I did work with middle schoolers- sneezing kids who leave dirty kleenex on the desk and touch door knobs with unwashed hands. I was hyper vigilant about washing my hands a lot and always before eating. It paid off. My co-workers were out more often for illness. Perhaps latex gloves and a face mask would allow you to use more powerful drug.

As for disclosing- my co-workers visited me in the hospital and then saw me miss the final term of the year. But, I came back and taught for 5.5 years. I got MS much later in life than most. A close friend´s husband works in HR and said to disclose to the school so that I´d have protection from being fired and to ask for accommodations- got an air conditioner in the class room.

For me, as bad as MS entering my life was and is, it was topped by other life events that were so much worse. Maybe those events allowed me to cope better than if I had not had them occur prior. I´d say plan for the future but don´t let worry eat away at the foundation of your soul. Any renovations I´ve done have been with universal design in mind but I make them beautiful so I don´t feel like I´m in an institution. Instead of seeing it as MS determining all the terms of the future, start with your current situation and create your own terms for dealing with MS. You might find peace of mind in getting an OTC eye scan- your optic nerve is the canary in the mine and if yours has a normal thickness of myelin, you can relax quite a bit in regards to the vision worries. If you want some prognostic info regarding your noggin, try to find a clinical trial that is using diffusion tensor imaging- it looks at grey matter and has correlations to cognitive reserve. Use that anger energy to gain knowledge or advantage in having more options to deal with this.

When all else fails, there´s always the sweet scent of puppy breath.

[Daisycat]

These past 10 years have all been about me being the best I can be professionally. I don’t have anything to fall back on. I don’t want kids so I don’t have that like a lot of people here do. . If I wore gloves and a face mask I’d have to explain to my coworkers why that was happening and at that point I’d have to quit. It’s rare for us to see zoonotic cases but when we do it’s usually an emergency and we don’t always have time for protection. For someone without immune suppression it’s not bad. . I’ve told my practice manager and that’s all I feel matters. Although I’m not sure what kind of accommodations would be possible for my job. . What Is an otc eye scan? I’m not sure I’ve heard about that. I’ll talk to my new neurologist about those things.

[Temagami]

Daisycat,

Sorry, it is OCT, not OTC and here is some info from the National MS Society from January 2016:

Summary

A recently published paper by a collaborative team used advanced Optical Coherence Tomography (OCT) and MRI brain scans of 107 people with MS over four years to track the impacts of MS and to determine whether changes in nerve layers at the back of the eye mirror changes in MRI-detected brain tissue integrity and degeneration.
The team reported that OCT findings reliably reflected overall brain degeneration, with a specific layer of the retina showing shrinkage at similar rates as specific brain regions seen with MRI. These similar rates of atrophy were more strongly associated in progressive MS for most areas of the brain.
OCT is a non-invasive, relatively inexpensive and well tolerated imaging method. These findings suggest that OCT findings reflect underlying disease progression, and further validate the usefulness of OCT as an important tool for tracking MS and the impacts in clinical trials.
The paper, involving a collaboration of 15 researchers at 6 institutions, was published in the Annals of Neurology in November 2015 (2015;78:801-813). Johns Hopkins University has been doing a lot of research into this.

My insurance covered it. You need to go to an ophthalmologist who has the equipment to do it. My dr. gives me printed copies of the photos with the charts and comparisons with the year prior.

I would think you could wear mask and gloves without revealing your diagnosis. It´s not an all or nothing situation. Your co-workers don´t have to know the why and they are not allowed to pry. Without knowing your dx, no one is going to think that you might one day have a cognitive issue. (The president does a lot of crazy *¿=Ç and so far has avoided the 25th Amendment.) Even if they did know about the MS, people are too lazy to read about all the consequences of MS and as a snowflake disease, even reading about the consequences, no one would know which apply to you. Right now they might just see you as someone who is emotionally testy and not know why. In your shoes, I´d rather take a more effective medicine that protects brain function even if it required taking precautions in the form of mask and gloves than take a less effective medicine to avoid some possible questions. I lost 6 years taking meds that were not effective for me and who knows, maybe if I´d gone on the more powerful one from the get go, I´d still be working. No new lesions since starting Ocrevus and no flares.

You will derive a lot of hope from reading the overcomingmultiplesclerosis website by Dr. Jelinek. He has MS and his mom had it. He´s a physician who has teamed up with other doctors to comb the research and conduct research. They are now being published with results that are positive.

You might also want to look into volunteering your professional skills to an organization near you that provides service animals. Likely you would feel that you would receive more in gratification than you´d be giving in time. Anytime that I felt low, I´d go do something to help someone else and that would shift my mindset.

[Daisycat]

I’ll ask my new neurologist about it. Hopefully it is something he agrees with me on. (The eye testing)

As for the mask and gloves how do I explain why I am wearing this every day now when I have worked there for over 3 years and have never worn them (expect when in surgery), but doing my basic notes or seeing healthy pet exams or even sick pet exams it’s not something anyone does. I just can’t do that at work. I do not want to quit my job and having everyone know or talk about what is wrong with me behind my back is my nightmare. (I work with a lot of catty people). We already do wear gloves when going in to see know potentially sick pets but that doesn’t mean that “healthy” dogs don’t have something or an emergency won’t come in.

My drug so far has worked fine for me and from what I understand all the newer ones require hospital stays and don’t have that great of co pay assistance. Yes something is better than nothing but I cannot afford 500 or more a month for a medicine that most normal people do not need. It is bull @$%^ and unfair to expect me to not be able to afford my other bills because these medicine companies treat us like garbage. I actually did try to call a few different ones and they would not give me any information until I was prescribed the drug. Maybe I can find online the qualifications or try again. The first lady I got was a real %^&#@# anyway and made a very rude comment about people complaining about costs.

I do plan to talk to my new neuro about different meds but I just can’t risk having my job find out. Having to work there for the few weeks until my disability request went through would be horrible. The stares and people not letting me do anything because if you read about this online you are going to find all the stuff I have over the years. People are going to assume I am not smart enough to know a dog from a cat. (Extreme example but still). I am fine with something that does not cause immune suppression and has the same type of copay assistance I have now. (there has to be something out there that is amazing that has this).

My other semi requirement is I have read that some of these drugs can cause pretty bad insomnia (I think it was only one actually and I cannot remember which one) I have had insomnia since I can remember and I have finally found what works for me so something that could take that away is something I want to avoid.

I’ve had no new lesions or flares in the past year. When I asked my old neuro about switching meds he said as long as I am not having new lesions or any issues he thinks what I am on should be OK. I wish I could have asked him more but that took up my one question I was allowed at each visit.

I do appreciate the advice about switching meds , but mine has worked for me this past year and it has co pay assistance to where I can actually afford it and still afford to take care of my animals and pay my other bills.

[marti]

Advice on how to get over the "shame" is difficult. Most people here don't view MS how you see it, and I don't mean to offend or upset you. Your perception of MS and associated symptoms are what contribute to your feelings of shame.

The only thing I can say is to reassure you that you did nothing to deserve this and it doesn't reflect on you as a person. You are no more responsible for your MS than a person with RA, ALS, and a host of other diseases. If a friend had MS, I am sure you wouldn't feel they needed to be ashamed. So remind yourself of that.

I am glad you have a plan to distract yourself the next few days. Hope you are happy with your piercings.

As for crying with your neuro, many of us have been there. I remember one appointment the first year when he had to read my prepared questions. I couldn't get them out writhout dissolving into sobbing tears.

When is your appointment with your new doc?

"LIKE" and agree!!!

[marti]

I think most of the answers to your thread come under the heading of "tough love". Some have tried to shock you into seeing that your future does not have to be so dark. You must be responsible for your own positive thoughts and forward motion. It's not necessarily going to turn out badly for you.

[gargantua]

You might also want to look into volunteering your professional skills to an organization near you that provides service animals. Likely you would feel that you would receive more in gratification than you´d be giving in time. Anytime that I felt low, I´d go do something to help someone else and that would shift my mindset.

Time and energy considerations aside, volunteering is hands down the best way to take us out of the navel gazing death spiral that is part of our human make-up. Everyone has problems they dwell on, but the psychological stress from problems - almost any problems - are significantly reduced by giving to others.