No one can take this alone, ill, w/a child....
 

I'm a think I'm a ty failure due to my system. While it made me very ill it was great and stopped the MS sx. Now 1 week before what would have been my 2nd infusion I have big time MS sx or at least to me. I have new sx - they so far are on and off. I'm scared. Is it time to call the DR? Or do I wait?

My neuro is poor to say the least. He pushed Ty on me then when I got sick told me they did not deal with that. So, I'm under a GP care for illness. I have not told Neuro I cannot take ty. Why should I - he does not care. I got the infusion at another neuros office. This one seems to care and told me lots the other did not. I saw him for just a few min to ok me for his center to do the infusion. He seemed good. In addition, they can do the blood work, scans... in office. Unlike the other. I want him as my neruro, But, until I get to the 15th and know 100% I cannot take ty again due to system and ongoing illness I cannot switch. I still hold out some hope I may get better in time. To switch now would mess up any possibility of another Ty infusion - ins.... But, to wait to switch Drs would mean a 3 week wait w/o drugs and I can't do that. So what do I do? I want every chance in the world for Ty but I can't go w/o meds. I'm confused and as such so is this post.

In addition, I am in the process of giving up custody of my child. I'm a single parent, 0 family, 0 friends. Somehow in typing this I have just realized that if I can get well and find the Dr and right meds for this MS crap then I can keep my child. Right????? OMG why have I not seen this B4. I'm sick bad - that is one thing. I have MS - that is another. I have not seen this till tonight - this second b/c I have been so ill for so long. I've given her up but I have not signed so I can get her back - right - yes. My cog is gone due to MS-stress-illness-being 100% alone or what ever. Why? I need your help. I probably should not push the post button but u are all I have. So please excuse me. I'm posting and I'm begging insight. I can't see clearly so please see for me.

Oh Sheena. How I wish I had the right words to say to you. I hear your pain and I so want to help.

Is there an on call neuro you could call for advice? Can you go to an ER? Is there a crisis centre who could help with the dilema you are facing regarding the possible loss of your child? Do you have Life Line where you live, or something similar where you can get telephone councelling when you're feeling lost and unsure of where to turn?

I'll not attempt to offer advice about the Ty not being on it, but there are other members here who hopefully will be able to offer you some advice from that point of view.

I know that I've probably not had anything helpful to say, but please know you are not alone Sheena, we are here to offer support in any way we can.

Sending you warm Hugs :hug:

Sheena,

Those more familiar than I am with TY can correct me if I'm wrong - From what I have read you can start to feel a negative difference with your MS as it gets close to your next infusion.

Why are you giving up your child? Do you know there are hundreds, thousands of women out there with MS who can still be wonderful parents - single or not.

How old is your child? Does he/she know your giving her/him up?

For some of us our children give us the ability to keep going, to keep trying and these little peop;e have the ability to love us no matter what we may look like, feel like, or our limited abilities.

Just a hug from these little people can give a person such a warm and up lifting feeling. Having a child can also give you the ability to focus on the childs needs instead of focusing on yourself and the MS.

I'm asking you to use caution, Sheena. How you feel now may not be how you feel a day, a week, a month or even a year from now. How will you feel if you give your child up and then realize down the road - I'm doing good, I could have taken care of my child and I would have been a good mother.

You are dealing with quite a bit right now, your feeling lousy, your scared, you don't know what will happen with the MS - this and more is part of the grieving process.

Those who go through the grieving process due to a death are told not to make any life changing decisions for at least a year. That's what I'm asking of you.

I would suggest you get some counseling, not only for you but for the sake of your child :hug:

Sheena,

The week before a Tysabri infusion really does seem like your body is in reverse. If you think that you are having an exacerbation, then tell your neuro or anyone in his office to get you on ISVM immediately. You can do IVSM when your are a Tysabri patient. That may help.

I hope that it all works out and that you can be with your youngster soon.

-Vic

I am sorry for all that you are going through right now, Sheena... But, all I can offer is to echo what the others have said. Their posts made alot of sense. I really hope things turn around for you.

Sheena, my heart aches for you. Others have given great advice.

I am not in your exact situation and don't know exactly all that you have going on in your life. But . . .

1. There are many of us single parents on the board with not only MS but other conditions as well. So you are not alone going through this.

2. For me, the 1st year was the hardest physically and emotionally. However, I never considered giving up custody of my kids. It made me fight harder to get the MS under control. Between their dad and myself, I am the better parent and would not even consider them going to live with their dad. It would not have been in their best interest (nor his or mine) for them to live there (long story). Keep that in mind, who would be the better parent for your daughter. Who would provide for her better emotionally. The financial stuff can be worked out.

3. There are many organizations out there that can help you out. Many of them do it for free. A good start would be to contact your local state agency. There are people who volunteer to assist those with disabilities. Some things that they can and do for you are shopping, laundry, house cleaning, errands, meal preparations, etc.

4. It is OK to go for counseling to help you through this. Are you taking an AD? If not would you consider it? Counseling for DD would be helpful too.

5. Please consider your DDs feelings in all of this. Would she be hurt emotionally be you giving up custody? What would be the long term affects on her? What would she feel like in a year when you are doing better? Would she feel that you abandoned her?

Please think about this before you sign anything. Give yourself some time. Talk to people who have disabilities and children.

I will keep you in my prayers and hope that you make the best decision for all.:hug:

EDIT: I am not on Ty so I can't help you out on the Ty issues. Vic is a great resource for this and there is a Ty thread on the boards that you can refer to.

Oh , Sheena,

please come back on and talk to us.

Sheena, if you are not abusing or neglecting your child (not getting your child medical care, not providing food, a clean place to sleep, making sure your child bathes and stays appropriately clean for her/his age, getting your kid to school, etc), then you really should consider keeping your child.

Life isn't a rose garden for anyone. Or then maybe it is, lots of thorns. Lots and lots of thorns. Your child WILL learn to adapt to your illness.

Your child will never forget that mommy gave her away. If you are abusing her or neglecting her, she will learn to understand that by giving her away you protected and loved her. But if you are not, I believe the scars would be very deep and life lasting.

No child has a rose garden without thorns.

To help you through this decision call your PCP's office and ask for a referral to a counselor that deals with children and parents AND can provide a sliding scale fee (if you need this).

As far as the TY, all I can suggest is that you open communication with the neuro you like. This is probably something you do need to do.

I sent some kneemail up for you.

Peace.

:grouphug: We are here for you. I have no experience with Ty. But my thoughts and prayers are with you. There are a lot of people here much smarter than me. They have helped me more than most of them know. Keep talking to all these folks. Tell us about your child. You need someone to talk to who cares.... and WE ALL CARE! :hug:

my prayers go out to you in this time of need, dont make any decision in haste, I raised two boys as a sloe parent, and it was hell but would never trade it for anything in the world, and I agree finding the right meds and docs, then u should be able to do it, you and your child, as a team.

as for the doc pushing u to try this med and not helping when u get sick on it, that ***** dont fly with me. that doc would have his ears chewed off, is this a normal thing with this type of med? I also am not familiar with this med, sorry, nor does that seem like a normal way of a doc handling things

but that doc would be on my short list of get new docs list

again try not to despair beyond reasonable thinking and do not make any hasty decisions, this is a decision you will have to live with for a long time.:hug::hug::hug:

You might use the phone book and start calling the help line numbers- usually in the front of the book.
Look for government agencies, churches, food banks, charities

South Carolina family services
http://www.google.com/search?hl=en&q...=Google+Search
http://www.google.com/search?hl=en&q...es&btnG=Search

North Carolina family services
http://www.google.com/search?hl=en&q...es&btnG=Search
http://www.google.com/search?hl=en&q...es&btnG=Search

Thank you for helping. I know I'm a much better parent then her father. He is what one calls a dead beat. Hasn't wked since 2001... A mothers boy and has now put mother above his child. He refused his last weekend, most of Easter and I'm told will not be taking her on his next either. Usually that would be great, but I need the time off to get better.

I'm taking care of her basic needs, but much of nothing more since I got sick. I think it is the sick deal that is making me even consider giving her up, but I've changed my mind. She will stay with me. I am so tired all the time and I can't sleep. Major problem. No the stupid neuro will not give pills. I'm switching on the 15th.

Yes, I have emily lined up to see a psycoanalist (sp) I did this a few days ago. I looked for help a long time back but none in this area so forget that. We don't even have a big sister program and zip for help around the house...

I think I'll be ok now. I needed to vent hear some real people with real advice.

Thank You So Much

:hug: Sheena :hug:

I'm so glad you posted an update. Please don't make a kneejerk decision on the spur of the moment that will be difficult to reverse.

How old is your daughter? Can anyone at school help - maybe they know of some programs in your area that can assist?

Some days I feel so bad and hurt so much that I think I can't do anything but lie on the couch. 24 hours later I'm fine. That's the nature of this beast....

Be honest with your daughter - give her the chance to help you. She will learn responsibility and compassion.

I hope today is a better day. :hug: We're all here for you.....

Sheena - Thank you so much for updating us. I am glad things settled down a bit for you.

You will be fine. Give yourself some time to work things out.

As HK said, some days are really bad and others are really good.

I'm also glad you will be going to a new neuro. Hopefully he/she will be able to get you on the right track so that you can feel better.

No problem on the venting. We are here to help you.:grouphug:

Sheena, I was thinking about this after I posted this morning and thought of some things that might be helpful to you as you don't have the resources around you to help. (Here I go with a list again. LOL)

1. Keep easy prep meals on hand for your "down" times. I always have those on hand for when DDs have to cook. Sometimes they are pre-packaged things like orange chicken and easy prep rice that you just put in the microwave. Sometimes when I cook, I cook larger meals and freeze the rest for these days. I'll make a large pot of chili and what we don't eat I freeze in single size portions.

2. Take advantage of places that deliver food, meds, and other necessities. If your local grocery does not deliver food Amazon has a whole grocery section. I know that it may cost a little for shipping but the prices are close to what they are in the store and you save some energy.

There are other sites that deliver things like tp, shampoo, toothpaste, etc. I have found these to be a little bit cheaper than what is in the store.

You can also have your meds delivered.

Generally, I don't do this as DDs can drive.

3. Teach DD how to cook simple things. When DDs were about your DDs age I taught them how to make simple things so that when they were at their dad's I knew that they would be able to fix themselves something to eat. I even taught them how to use the stove and cook eggs.

4. Try to spend 10 minutes or less a day "straightening" up the house. Make a game of it with DD. Again DDs are older, but every evening before bed we straighten up and wipe the counters down. It takes all of 5 minutes but it makes a huge difference over all. Things don't get out of hand and overwhelming.

5. Take 5 to 10 minutes everyday to come on here for support.:D (I just had to throw that in there. LOL)

Anyone else have some time and energy saving tips for Sheena?

Great idea, T.

I have been a single mom to my two girls for most of their lives, and they are (almost) 16 and 12 now. I have had no support what-so-ever from my family, but my ex is good with them (generally only when it suits him though ;)). It's not easy, Sheena, but definitely can be done . . .

Some ideas to add to the list:

1. Have play dates with other kids when you are able to, so that you can have breaks sometimes when you need them. (I take several kids to their sports so that I can lean on others when things are bad...).

2. Give an allowance for chores, and plan to take your daughter out to spend it on a certain day. It is incentive for her to keep up the good work.

3. Find church camps that might help pay for her to go away a few weeks during the summer.

4. Do the grunt-cleaning 10 - 20 minutes each day instead of doing it all at once. For instance, my toilet is never scrubbed the same time as the counters or tub, because I do only one job in there each day. (I clean the tub when I am showering actually).

5. I found that my kids were way easier to manage when they had a friend over to play with . . . otherwise they got too bored.

6. Teach her to be quiet when you need to rest, then plan to spend a bit of quality time with her when you have the energy. She'll get used to the routine.

Cherie

Awesome idea! Not only will they help with camps but with other things as well. Our church has help with scholarships for DDs to go on retreats and such. As well as one year the Youth Group bought me groceries. Brought tears to my eyes.

Additionally, I know that where I live the NMSS has a camp for kids whose parents have MS. They do it in the summer and I think it is a week long camp. You might want to call your local NMSS chapter and ask about it. It will give you a weeks rest.:D

At DDs high school they have a club that does volunteer activities. You could certainly call the high school and see if there is a h.s. student that could come help. If anything, they could play with dd for a few hours to give you a break and dd would be thrilled to have a big kid come play with her.

yes i know this is a lot of this is easier said than done, but when you do prepare meals I use to always make extra and freeze extra servings at least two extra,my freezer would have approx 6 days of meals in it for the kids, so that the boys were always, fed all i would have to do was nuke it and serve and as time got on they could even nuke em themeselves. see if you have a local pantry too that can help with food and then maybe through the pantry, they could help direct you, i know how down you were last night, and am thankyou for the more upbeat notes I am reading today, but as you said we are not in your shoes and the decision is ultimatly yours and it when made will be finale. hang in there, i use to be pretty negative about the light at the end of the tunnel was always an on coming train, its not always an on coming train, sometimes it is light at the end of the tunnel, a bright and glorious light:hug::hug::hug::hug::hug::hug::hug::hug::hug: :hug::hug::hug::hug::hug::hug: i put in as many hugs as the script would allow me too

United Way's First Call for Help

You can google this for your area or see if they have a telephone number. They are in most communities. Just tell them what type of assistance you are needing and they have agency listings they can give you.