I'm back, and MS still SUCKS..

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Sandy C.
Regular Member


Date Joined Feb 2006
Total Posts : 129
   Posted 8/5/2007 3:26 AM (GMT -6)   
Oh yea, I am still here and still have MS... Like a few people, in posts that I have been reading, it has been awhile since I have posted. I just dont want to think about this ugly beast that is in my head (no pun), and I have a few VERY GOOD months. No injections, no medications, and I have been doing better then I have since I was diagnosed in 2003.
 
However, this ugly beast is not gonna sleep for too long for me. I have had NO NEW symptoms in almost 8 months, and have become well adjusted to the balance and knowing what to expect when I wake up in the am. I have been able to go to work without issue or problems for the last 8 months, I have gone through many of lifes ups and downs without having to worry about MS in addition to. I got a promotion at work that I never expected, planned for, or even thought I was capable of because of how MS has effected my work life. Life was good...
 
Now, I wake up and have to wonder if today is gonna be a good day, or bad day. Will I be able to pee, poop, see with both eyes, walk without limp or PAIN, will I be able to think and reason at my full capacity? I have been told that a new MS syptom is one that lasts for 24 hours or more. For me, I can have many symptoms in one day that come and go, or stay. ALL symptoms come back at random times and progressively get worse over a period of weeks. From past experience, when a relapse has run it course, I feel like I have adjusted to a new baseline, and generally have less fatigue and pain overall.
 
My right side is always weaker then my left, and I have no fine motor skills in my hands. I have fatigue. Period. It's just worse when I am in periods of relapse.
 
Having said this, I think I am heading for a relapse at this moment, but I am hoping it is just and exacerbation related to the heat. My neuro is on vacation, and my PMD is not active with my MS at all. I am going to call him again on Monday and tell him I NEED the IV steroids (I refuse the oral kind because of the terrible side effects = not worth it), and Norco for pain. This is the first time I am feeling the need for narcotics for the pain... =( Weither I am headed to a relapse or not, IV steroids was suggested to be used more aggressively anyways. I also will have close to 3 weeks off work starting Monday, and would not have to miss any work. I have used all my Medical leave for the year and will have no insurance if I call in three days in a row. I know I can't plan things when it comes to MS, but to do everything I can to prevent, or lessen, the effects of MS in my life, I will do!
 
Now I need reassurance, my mommy... my biggest support... is in Europe and at sea. No phone calls in or out and I dont want to send her an email either.
 
What do you all think of my plan??? I hate this stupid disease, I hate it, I hate it, I hate it...
Sandy C.
Diagnosed with Multiple Sclerosis September 2003 currently taking Rebif, Cymbalta 60mg PO QD, and Provigil 200mg PO BID.


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 8/5/2007 4:51 PM (GMT -6)   

Hey Sandy,

 I am sorry!!  Despite having a few very good months, you sound really depressed.  Do you have a good support system?  Besides your mom, who do you have to help you with this?  I am happy to support you and as we all are here but you need some help here.  What about talking to your PMD about depression?  I know you are on cymbalta.  Is that working for you?  Why did you stop meds?  I am assuming it was the side effects, just wondering.

Good luck with getting the steroids and I hope you are feeling better real soon.  Keep us posted as to how you are doing?

I hate this disease too!!!

love and prayers,

 


Gretchen
diagnosed: MS  July 2006
 
Life shrinks or expands in proportion to one's courage. 
Anais Nin
 


Sandy C.
Regular Member


Date Joined Feb 2006
Total Posts : 129
   Posted 8/8/2007 5:02 AM (GMT -6)   
TY gretchen! WoW I dint realize how depressed I am! I am going through a divorce atm as well... Got a restraining order on my hubby for domestic abuse, but now that my mom is away I find I am returning to him. Which is bad and I know it! ButI feel helpless, hopeless, and not in control of my own actions at times. To avoid dealing with feeling lonely and isolated I play online video games for hours on end. Reguardless of what I wrote in another recent post I really dont drink. I havent drank in over a month or gotten drunk in over a year.

The cybalta helps with the pain. I think it helps with the depression as well. I cant take rebif anymroe because it raised my liver enzymes too high, and I have reacted poorly to betaseron and copaxone as well.

My mom is my primary support, although others offer to help, I decline. My mom comes over and will live with me for a period of days at a time, and not ask if I need help, she is jtu there for me. I am 'known' as the attention getter in my family, and I try to avoid that at all costs. But I still think I seek the attention of those closest too me. I love it when they are here, and I can just sit around and chat, go to the movies or whatever. When it comes to friends I find it to be difficult to return favors because I am always so tired and worn out, so I wont ask.

Yes I do have a strong, yet weak support system. I hate that I am seeking the support of my husband who I am currently in a divorce with. I did drop the restraining order as well. In the time that we were married, I spent A LOT of money on him and now I am having trouble making ends meet. I wish I could jsut sell my house and move to something smaller and easier to take care of, but I cant because of the divorce ( I am in Cali).

Well thanks for letting me vent here, I spend a lot of time avoiding the world around me by playing video games to the point I know I have a problem and I dont care. Well, untill my doggies or kitties start to beg for attention while I am playing.... I am busy dont they understand =/

Sandy C.
Sandy C.
Diagnosed with Multiple Sclerosis September 2003 currently taking Rebif, Cymbalta 60mg PO QD, and Provigil 200mg PO BID.


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 8/8/2007 8:52 AM (GMT -6)   

Sandy,

You need to tell your doctor what you have told us here.  You seem seriously depressed and I am worried about you.  You are doing everything you can to escape and the includes putting yourself in harms way with your husband.  Come on girl, you are worth more than that!!!  Also, you may want to contact your local MS Society and see what support they can offer.  Seriously, Sandy, you need to feel better.  Life doesn't have to be perfect to be enjoyable and it seems you have lost that joy.  Keep us posted on how you are doing. 

Take real good care, Sandy.  You deserve it.

love and prayers,

 


Gretchen
diagnosed: MS  July 2006
 
A person without a sense of humor is like a wagon without springs.  It's jolted by every pebble on the road.
Henry Beecher
 

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