hello everyone, i would like to introduce myself. i have been browsing and finally decided to join your group. I have been dx with RRMS for about two years. Jan will be two years and in that two year span, it has been a rocky road for me. I still have a hard time accepting the fact that i have MS and the fact that it has made me inmobile at times, more inmobile then mobile. Most of you i am sure deal with this same situation or have once before. How do you deal with it? just accept it and move on? Have you ever felt it hard to accept? I feel that no matter how much i read or talk about it i still cant say alright i have it and deal with it, i still cry at night....sometimes just cause of pain i have in my legs or another cause i have MS and i am frustrated. I am having my 5th attack this year already and i am sick of it,it seems like every three months or so i am back in the hospital or out paitent getting treatments, i dont get it... i cant lift my leg up to walk and there is complete numbness in my hand and my feet are on fire, lets not forget the lovely pain i have in both of my legs which never goes away...even with strong doses of meds. sorry i got off track a little, sometimes it feels good to vent or talk about how i feel. I know my husband and family understand but sometimes i really dont think they do cause they are not in my shoes and dont deal with what i deal with on a daily basis, do you know what i mean? well i am sorry if i went on too much but i was just letting you know that i will be on posting and responding and just wanted to introduce myself, so i hope you all welcome me with open arms. take care and be well
Many hugs to you. Yes, to all that you said when you asked do we know what you mean. I don't know that I haven't read at least one entry from almost everyone here that doesn't sound like yours. Mine included. It has been 4 1/2 years for me and I still don't say it outloud most of the time. I have been blessed with few relapses but the everyday things remain.
While it is true that MS is not truly a "death sentence" it is a condition that changes your life. It takes time to even get a diagnosis which can drive you nuts in itself. It takes time to find the right medication, right schedule, right doctors etc.. As Nikki says, it becomes your new way of life and you find ways to adapt. It can still be a very fulfilling life.
You are blessed to have friends and family who try to understand and be supportive. They will never know exactlly what you are going through but I have found that being totally upfront and honest about how they can help opens the communication and is a win-win for both. They tell me they are just a frustrated because they don't know what to do/say.
Welcome to this board. You will find more support than you can imagine and lots of opinions and information to use for your own personal situation. These people do understand and they want to help. They totally rock!!!!!!!!!!!You won't find a better place.
Bless you and feel free to vent anytime you want!
Lisa
Last edited by tuckersmom; 09-17-2007 at 05:45 AM.
Hi Louieslove
Just wantd to welcome you to the board and let you know that you are NOT alone in your frustration or pain!
I read that you are in PA, are you in the Philly area, Pittsburgh or somewhere in between? I am only curious because living in the NJ area, Im very familiar with the MS docs and clinics in the Philly area and have some great recommendations if you need them.
I also have RR MS and have been dx now for a year. I am not having as many relapses as I used to, and I feel alot better; much of this I attribute to Rebif. Are you on any disease modifying meds? And, have you had any MRIs since you started taking them? Just wondering if your doctor is sure that what you are taking is the best drug for you...
I do hope you start having better days....please join us as frequently as you feel up to it. I have found that venting and sharing on this board also helps the pain go away!
Hugs,
Nikki
How do you deal with it? just accept it and move on? Have you ever felt it hard to accept? I feel that no matter how much i read or talk about it i still cant say alright i have it and deal with it, i still cry at night....sometimes just cause of pain i have in my legs or another cause i have MS and i am frustrated. I am having my 5th attack this year already and i am sick of it,it seems like every three months or so i am back in the hospital or out paitent getting treatments, i dont get it... i cant lift my leg up to walk and there is complete numbness in my hand and my feet are on fire, lets not forget the lovely pain i have in both of my legs which never goes away...even with strong doses of meds. sorry i got off track a little, sometimes it feels good to vent or talk about how i feel. I know my husband and family understand but sometimes i really dont think they do cause they are not in my shoes and dont deal with what i deal with on a daily basis, do you know what i mean? well i am sorry if i went on too much but i was just letting you know that i will be on posting and responding and just wanted to introduce myself, so i hope you all welcome me with open arms. take care and be well
I have had one long miserable time daily since October 2, 2002 with PPMS. I am never strong enough to deal with the pain and problems alone. I learned long ago to turn all my problems over to God. I create micro-goals and longterm goals. I count my blessings daily, no matter how small. I think that even in my worse pain, there are others who are suffering more pain than I am.
Some of what you are feeling comes from placing too many burdens on yourself. On the days when you are immobile, have an activity planned for such a day. On my worst days, my "big plan" is to try to just get out of bed and get into my power chair. If that is not going to happen, I will pop in a DVD (Monty Python's Holy Grail,..... something to laugh) or go online.
Plan for every circumstance you can think of, and then do them! Dallas Cowboys coach, Tom Landry, had a notebook he carried. In it he had every conceivable situation and how to resolve it. He had made micro-goals. On your worst day it is 4th and 100 yds to go. You do not go for it, you punt and know that tomorrow will be another day.
The pain is always difficult. You might find relief in a cool water pool or a cool shower. Avoid heat on your head and neck. Try cool compresses for your painful areas.
Since 2002, I have found that the clock on the wall does not matter. I have my whole life ahead of me to accomplish what I need to. If I can not do it today, tomorrow is one day closer to accomplishing the task.
I, too, get tired of being sick daily. But the mind forgets when you have other things to think about. If we have nothing to do, then we sink into depression. Me? I am too busy!!
Last edited by MSJayhawk; 09-17-2007 at 08:30 AM.
Reason: typo
thank you everyone for your responses, i now feel like i am not alone! which honestly feels great. I know there are many people out there that have MS and deal with it, but knowing i have support from others and understanding my situation makes me feel a whole lot better. So thank you for the welcoming.
Nikki, i was down in Philly to see a MS specialist when i first got dx back in 06. I heard she was one of the best around but if you have any others you would like to share i am interested. I live near Allentown area, familiar? Where in NJ are you i know Jersey pretty well myself, i am origanally a Jersey girl, but moved to PA.
As for the meds well as of right now i cant take them cause i am exspecting my second daughter next month. I love the fact that i can mother children but my body cant. I have the reverse effect with MS...although Pregnancy is supposed to make it subside, i actually have more attacks during pregnancy then i do while i am not. It comes out more. That is how i found out in the first place about my MS, i was pregnant with my first and during my pregnancy i was having a hard time walking and my vision was terribly blurry. ON i later found out what it was but i would complain to my doctor all the time about it and he said it was from my weight gain. well after i had my daughter about six months after i had a full blown attack and was in a wheel chair, had to do physical therapy to get moving again which i will never be where i was. I loved to hike up mountains but not anymore i cant make it up a hill without having a real hard time, but anywho....that is why i am not on meds right now. After i deliver my second blessing i will be on Rebif, but first they want to see how i do with relapsing. My neuro said i have a 75 percent chance of having another big whammy like i did with my last pregnancy. At least this time i can prepare myself for it and i prepare my husband for it as well.
Well thanks again for the welcoming and ill be posting again
I know you are so excited about your second "miracle" due next month! All children are miracles from God. I hope your doctor is wrong and that you don't have a hard time with your MS this time around.
HI again. Just wanted to answer your questions...first of all, you and I are practically neighbors! I live in Hunterdon County, NJ, about 1/2 hour from Allentown PA. (My family is still in Philly). As for docs...some of the very best MS docs in the country are at Robert Wood Johnson, in New Brunswick, NJ...Dr. Jalbut has a terrific reputation for being "cutting edge" and doing lots of research....if you want to stay closer, I would highly recommend any of the docs at Univ of PA Neurology Clinic, they have a specialty MS Center there...and last but not least, Ive heard good things about St. Lukes, in your area..they have a rather large MS Clinic, which is "up and coming" in the world of MS...
I dont know if this helps...I know Im allowed to mention docs and cities/states, but I dont know that I can give you much more info than this, per the posting rules...
Congrats on the upcoming birth...thats exciting. I too, am on Rebif and have found that it is really helping me. I have over 50 lesions on my brain, and in the past year of Rebif, nothing more has developed and still nothing on my spine. I really like Rebif, overall. Im stil working, taking care of my family and generally not stopping myself from doing anything I always did...I just do it alittle slower!
Please keep us informed of how you are doing..and when is the due date? Ill say a prayer for you and your baby..
hugs,
Nikki
louieslove, congratulations! Sorry to hear you're one of the exceptions to the third trimester feel-good period but what a wonderful thing to look forward to! We've all heard things re: pregnancy and MS, etc., but I only recently read the theory that post-partum relapses are due to a *sharp* drop in the (or one of the) pregnancy hormones -- ironically, the article I saw talked about the stress hormone associated with pregnancy. I don't know if there's anything that can be done about this but when I read it, it did make me wonder if there was anything safe to take that might make that drop more gradual... Maybe/Probably not but I did think it was interesting and might be at least worth mentioning to your OB.
