Sick of people treating you like a disease

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Sick of people treating you like a disease

Postby hlm286 » Thu Oct 22, 2009 8:51 am

Okay, I'm mostly venting, but I'm soo sick of people treating you like a disease, not a normal person! I know some people might just be trying to "have your best interest in mind" but the majority of people giving you "advice" don't know anything about you or your disease! IFirst off, my MS specialist told me after diagnosis that if I want to have more children (we have a 19 month odl little girl), then it's best to try now before I start any medications and can start them when I'm done having kids because "that is more important than any medication for you right now", which thrilled me so we started trying right away. Now I'm pregnant and I'm soo happy! But before I got pregnant, I called my midwives to see if they had experience with people with MS and the one midwife just started going off on me that I should get genetic testing done before I try and have another baby to "make sure I can't pass MS to my child" because I wouldn't want them to grow up and get it and say "thanks mom!". Needless to say this really upset me but I learned to take it with a grain of salt because she obviously doesn't know what the h*ll she's talking about. So now my husband and I are looking at planning a trip for next month to Cuba, just to get away and relax and have one more vacation before we have two children which will be much more challenging. I'm feeling great MS wise and pregnancy wise and looking forward to a nice vacation. So, I call my travel agent. She then starts telling me how she's reluctant to book it for us because I have MS basically and I'm pregnant. I understand her concern, but I feel fine, I'm going to check with my doctor first, and she doesn't seem to know anything about MS! She's telling me that she's worried about me flying because I have hand numbess and talking in such a worried concern about it all that it makes me feel like crap, like I shouldn't go and just be stuck doing nothing for the rest of my life because I have MS! I hate that! You still have to live your life and go after your dreams, what kind of life would that be if you lived in constant fear and didn't do anything? I worry enough about everything, and yes even having MS, but I still want to enjoy my life! And people treating me like this just makes me worry more and feel depressed! Do any of you (who actually understand where I'm coming form) have any advice? Do you travel and do you find it affects your MS at all? What do you think I should do?
I'd appreciate any responses and am grateful to have this site to come to for support and understanding.
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Postby CRHInv » Thu Oct 22, 2009 11:17 am

Good for you! You sound very determined and confident. I wish I was more like you!

I really think it is terrific you are forging ahead. Go for it. I think each of us can make the best decision for ourselves based on how we are feeling. We know how we feel better than anyone, because we know the stuff we don't mention to those close to us.

I find myself being so concerned about what might happen, that I miss a lot of things. I don't feel great, but I bet this might be all I get... I am just now starting to just go ahead with plans.

The more we know about our situations the easier it is to ignore those who don't. Frustrating, but really not worth our time. I have borrowed a rather rude 'gesture' from my teenager. She makes this noise like, "pch," it is drawn out and can be sort of humorous or very dismissive, depending how it is used. Use that or the word "alrighty". They both give the immediate impression that you think the other person is, well, not very informed, and they don't get your blood pressure up like arguing with someone.

Keep moving forward!!!! I love your attitude!!!
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Re: Sick of people treating you like a disease

Postby Caralea » Thu Oct 22, 2009 12:23 pm

hlm286 wrote: I worry enough about everything, and yes even having MS, but I still want to enjoy my life! And people treating me like this just makes me worry more and feel depressed! Do any of you (who actually understand where I'm coming form) have any advice? Do you travel and do you find it affects your MS at all? What do you think I should do?


I think you should do exactly what you are doing!!!
I'm glad that you have the strength of this attitude behind you. I was diagnosed just after my first son's birthday and then I got pregnant in a few months with my second son. Many women find pregnancy to be a time of strong remission- just make sure you have lot's of help after the baby comes! Don't be afraid to ask for it.

I have had no problems with traveling (unless I pushed myself to go on business trips when I was having a flare up) bad girl! :roll:

When i was diagnosed I went through all of the fears that everyone does but I remember that after the brief initial shock my next thought that I felt screaming in every cell in my body was: "I AM NOT GOING TO LET THIS AFFECT MY LIFE!"
And for many years it didn't really. Fatigue, numbness, sensory issues for the most part. But I didn't do any drugs most of the first 15 years for better or worse and I am much more affected by it now. The thing is that even though I am more disabled than I ever intended to be at this point- I still feel like I'm not really letting it affect me. My life is as full of love and laughter and adventure and fun as it can be and I feel blessed.

Carry on!!! Have your adventures and nod politely to the naysayers.

all the best,
Cara
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Postby Caralea » Thu Oct 22, 2009 12:26 pm

Oh! and fabulous for you that you are going with a Midwife!! Just find another one that has a more informed attitude. I had both of my boys at home and in my pre MS life was a midwife that attended over 200 births (as assistant for most of those and primary the last couple of years)

:D
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Postby hlm286 » Thu Oct 22, 2009 3:26 pm

Thank you both for you uplifting responses! I do think that attitude is extremely important so I try to maintain a positive and hopeful attitude (although I understand it's easier said than done sometimes :( )

I had a midwife with my daughter but I prefer to give birth in the hospital (just personal preference.) I just love the closer connection with the midwives, more one on one time and they are at your call 24/7.

I'm looking forward to the future, even though there may be great challenges, I just believe you only live once so give it your best shot! :)
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Postby MrsGeorge » Fri Oct 23, 2009 1:41 am

Firstly congratulations on your pregnancy! It is fantastic news! How far along are you?

I am 10 weeks pregnant (on sunday) and trust me, I know about mothers and family having opinions abuot what you should and shuoldn't do. Luckily, my MS nurse is delighted about it although my neuro tried to talk me out of having children! Not sure what my midwife thinks but she told me I would have to give birth in hospital.

I think we do need to be aware that there will challenges but I am sure that you, like me did the research first and know what to expect!

Hope you have a fantastic pregnancy and a great holiday. Try not to let the 'advice' of all and sundry get you down. I try to remember that people are trying to help in their own stupid way. So long as you and your partner are on the same page then you have what you need.

Would be great if you want to pm me - be nice to have an MS pregnancy buddy, if you're interested?

Congrats again.
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Postby Wonderfulworld » Fri Oct 23, 2009 2:09 am

I think you are absolutely right in your attitude hlm. Good for you! Congratulations on your pregnancy.

I would ignore those eejits (Irish word for silly people!) - they just don't know what they are talking about. It's very difficult when you are relying on them to do something for you though - midwife/travel agent.

I found this booklet excellent http://www.acceleratedcure.org/download ... withms.pdf - it is written with the workplace in mind but the attitudes and approach to discussing your MS worked for me in all areas of my life. The more matter of fact I was about it the less I got that kind of response, and even if I did get it, I just moved the topic on quickly.

The only problem I've ever had with travelling is if the weather is too humid/hot and I get very fatigued. I have adjusted when I travel now and we only go on holidays in the cooler months of early summer. It makes a big difference to my (and everyone's) enjoyment of the holiday.

Have a great voyage and again, congrats! - both on the pregnancy and your positivity :wink:
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RR-MS dx 1998 and Coeliac dx 2003
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Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby pager » Sun Oct 25, 2009 1:36 pm

You have received so many great comments and support! It is great that ou are moving forward with your life and a vacation before your second child arrives is excellent. (We have two daughters and it does get busier!) However, one suggestion on the much needed and expensive trip is travel insurance. When we went out of the country (before MS and no health issues) we purchased travel insurance in the event of something out of our control occurs. It wouldn't hurt to price this and see if it may be beneficial.....
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Postby Caralea » Sun Oct 25, 2009 2:43 pm

pager wrote:You have received so many great comments and support! It is great that ou are moving forward with your life and a vacation before your second child arrives is excellent. (We have two daughters and it does get busier!) However, one suggestion on the much needed and expensive trip is travel insurance. When we went out of the country (before MS and no health issues) we purchased travel insurance in the event of something out of our control occurs. It wouldn't hurt to price this and see if it may be beneficial.....


I did purchase some travel insurance the last time I went out of the country with my two boys. And...my younger son broke his toe the second day.
The Travel insurance made the process so difficult to deal with and they gave me the run around for so long that I never did get reimbursed for the charges.
I was very angry about that.
Just my experience. If I there had been someone in my life at the time that could have helped me stay on top of their demands it might have been better.
Good luck and have fun in your travels!
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