diagnosed 2 years, first time reaching out-this is my story

[tskilly831]

Hi,
I was diagnosed in August of 2011. I had numbness and tingling in my left hand and bilateral legs when I bent my head down. I didn't really think anything about that, ironically working as a RN on a neuro floor. I thought it was just pinched nerves. I had back and neck problems in the past and thought that was all it was. This started 3 months after giving birth to my 3rd child.

I went to an orthopedic for shoulder pain, which was unrelated bursitis, but she took some x-rays while I was there. That is when the spot on my spinal cord was seen. Then came the MRI, LP you all know the drill. I have never said "I have a disease" out loud. I have said "MS" but you know its not the same. I didn't even talk about it for months. I was still nursing my baby so we waited for meds. Which was fine because my symptoms were manageable. Well that was the calm before the storm.

Long story short and one more child later- here I am..... MY symptoms are extreme fatigue, severe pain primarily in my legs but can be all over, migraines and now depression. I cannot accept that I hve a disease. My twenties were sucky. I married someone I shouldn't have, had 2 kids and a horrible, verbally abusive marriage. Then came divorce.

While in nursing school, found my true love. Finally, I thought, happiness! We were married a year and this all started. I feel like every time I'm close to being happy, something always happens to take it all away. I feel bad for my husband. He deserves better. And now my oldest daughter, who is 14, has major psychological problems. She was in the hospital in June for suicidal thoughts, hates my husband(or she thinks she does because he does more for her than her father and she can't admit it). My family life is so stressful and hectic that I don't have time to rest. I'm scared for a relapse. Where will the lesion be this time?

Anyway, moral of my story, I am at my breaking point. I know it can always be worse. I've seen worse. But damnit, cant I want things to go my way for once? Can't I feel sorry for myself? I am at the end of my rope! Don't get the wrong idea, I would never hurt myself and put my family through that. But I haven't been happy since childhood. I can't take any more heartache.

his is my story, sorry to ramble but I am having a moment. My name is Tonya and I have a disease. Its called Multiple Sclerosis.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[ewizabeth]

I am so sorry for all that you are going through but you need to know that stress is a major factor in MS attacks. I have been relapse free for eight years but have had major stress that has caused a flareup of symptoms for me.

I hope that you are using antidepressants and trying to minimize stress any way you can. Try meditation and yoga, they really do work, and don't be afraid of AD meds. Good luck to you.

[Kimba22]

Hi Tonya,

(((Hugs)))

I'm sorry to hear you are having such a rough time. And, also to hear about your daughter. It can be hard enough just to fight your own symptoms, then you have to worry about your child ...

Depression just makes everything else so much worse! I hope you will find the right medication and dr./therapist to help you overcome it.

And I know how pain affects QOL. I've always had pain with my MS. When I was dx'd, I was told there was no pain w/ MS. (I'm glad that thinking has finally changed.)

Sometimes, certain meds like Provigil, Nuvigil, or ADHD meds help w/ fatigue. Have you ever tried any of them? If not, talk to your neuro.

I really hope you also can a way to relax. Somehow, you need to carve out some time for yourself. I know, easier said than done, but it is so important for your health!

Best wishes,

[nataliefolan]

so sorry for all that you are going through.

[22cyclist]

Tonya: Hello, and welcome to MS World! I am so sorry everything is so difficult right now. For now, you just have to take a few minutes, or seconds even, whatever you have to yourself, and do some deep breathing. It also will not hurt to discuss this stress with your PCP. They might give you something for the anxiety. It is best for you to remain calm through the chaos. It will help you and your MS as well as your kids. After that, you might consider family counseling, as well as individual counseling for your daughter (if she is not already in it.)

We are happy you joined MS World. Please look around, ask and answer any questions you see, and check out our chat rooms!

I hope things get better for you soon.

Take care,
Lisa
Moderation Team

[Seasha]

Dear Tonya,

Your story breaks my heart and I'm so sorry you have so much to deal with right now. The good news is that you took a first step and reached out to us. We are all here to help one another and walk with each other through the good, bad and ugly times.

However, we can only do so much and I would encourage you to seek some counseling with a therapist. If your family is uncomfortable going to a family therapist, seek help yourself! I have done so many different times throughout my MS journey and it was a Godsend!

I was dx shortly after my now husband and I married and we both had teenagers. A blended family has its own set of challenges - I know all about it. But, many years have passed now and we made it.

It's perfectly reasonable that you are feeling sorry for yourself - give yourself permission to grieve - OK? All of us have our pity parties and it's OK! And hold onto that rope with all you have!

We'll be thinking of you and sending prayers that you will see this through. Please stay in touch with us!

[Temagami]

I can tell you that energy spent worrying about the next lesion is a waste of energy- been there, done that. It will be what it will be and yes, it may surprise you. You´ve already shown that you can work FT and raise babies, tweens and teens. Make a relapse with time off look easier

Your hubby had another child with you knowing you had MS- I´d say he´s in for the long haul. Try to accept his love and not feel that you owe him one for one in regards to chores and things like that. Your emotional support to him is something that he does not get from anyone else- yours is priceless to him!

You do deserve happiness and it seems to be one of those things that comes in small moments in our daily lives; we just need to be open to spotting it.

It does seem unfair that upon finding Mr. Wonderful, this struck you. It IS unfair. I can only see that perhaps the silver lining is that it makes us yet more compassionate.

Hugs to you,
Temagami

[tommylee]

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[/COLOR]

Glad you found this place. It may bring you comfort to talk to people that can identify with your struggles.

Your whole story sound's familiar and I think many other members could have written one very similar to yours.
The one thing that struck me was the idea you have not been happy since childhood.

You made some mistakes in life and you have to deal with them and this MS krap.
That sucks!!! but it does not have to ruin your life.

Can you allow yourself to be happy anyway?

Think about the good. You are married to the love of your life and you have your children. If you can focus on the good in your life, accept the idea that you deserve the great guy you are married to and decide to be happy, perhaps you will be?

If we focus on all the poop in life we will drown in it. But if we can ignore all the stink of life and try to focus on the beauty we can find joy and some happiness.

Or that may be all crap and I may be an idiot?

Either way, Welcome! I hope you find some support here.

[tskilly831]

thanks to everyone for their responses. I apologize in advance for my punctuation. typing in dark trying not to wake hubby or 3month old on this crappy tablet. I just got the new Windows tablet and indo not recommend it. I am taking it back and going for the iPad.

So I want to clarify some things and respond to some of you. First off, I have had ups and downs in my life like anyone else. However, physically and emotionally abused at early age by biological father then he left me when I was 5. Then adopted by Stoddard. So he was great and I had more than a lot of kids. However, I think my bio father abandoning me set the stage for a lot of self doubt and low self esteem throughout my life. I have definitely had happy times.

Kimba- I feel better after you told me bout doctors not thinking there was pain with MS. Most des. Have said to me also. I had a pain dr. Say to me that with the amount of pain I am describing I should not be walking. So basically, saying he didn't believe me. I'm no pain med junky. I would love to go without any meds. They talked about a baclofen pump possibly but I haven't been back to him since I first found out I was pregnant last year. I was taking Provigil, which was a godsend, but had to go off for pregnancy. I am breastfeeding now so I am off that, tysabri and Neurontin. I am still taking baclofen and methadone. However, I don't like the methadone ns have been waiting until after baby born to wean off. I also enjoy yoga, I've done it for 15 years. However, with the amount of fatigue and pain lately I haven't done it. I also recovering from bursitis in both shoulders. I plan on starting again I just need to find motivation.

Lisa-thanks for advice. My daughter is in therapy and I am going to start. I have come to the retaliation I have been in denial fir 2 years. I am now in the depressed stage. I'm glad I found this site.

Temagami- thank you for your encouraging words. I think I have found a good place here. I never thought reading other peoples stories would help, I was really wrong!!