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A long, painful week.
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rikilynn1982 posted:
I hope you all were able to enjoy the holiday weekend. I was thrilled with the cooler weather that has moved in to the OK, but I didn't get to enjoy it much.

I work as a substitute teacher at the local high school, which usually provides anywhere from 1 to 6 or 7 days of work per month. Last week I worked every day. I usually don't agree to work more than three days straight because it wears me out so badly.

As the week started I was already hurting and tired after battling fatigue and various nerve pain for the last two months, but I agreed to work all week anyway. When you never know when they might call again, you try to work every chance you get. Man, did I ever pay for it though. I'll enjoy it in a few weeks when the paycheck comes in, but the past week brought me to a level of pain and fatigue that I haven't experienced in almost 6 years.

By Wednesday I was exhausted and in so much pain I could barely move my arms to eat dinner. Thursday night I fell asleep about 7pm and didn't wake until 6 am Friday. The eleven hours of sleep certainly helped, but I was still pretty sluggish and in a lot of pain Friday. Again I fell asleep early in the evening and slept all night. The sleep marathon continued through the weekend. All the pain and lack of energy kept me in a bad mood all week. I'm sure there are a few freshmen that might be calling me Miss Cranky-pants from now on.

Tonight I'm not quite so tired, but in even more pain. The joints in my right leg are very painful and feel swollen. What feels like sciatic nerve pain is shooting across the top of my hip. It actually makes it feel like my underwear is too tight! I wouldn't mind a dose of something with codeine in it right about now, but will have to settle for some Tylenol Arthritis. Hopefully it will feel better in the morning, because I can't get to the doc until at least Thursday.

One things for certain, this past week has clarified to me that my body won't tolerate a full-time job. Meeting with the lawyer this week to review my case for SSI. I go before the judge in November.

Any suggestions on how to relieve the pain in my hip? Been stretching and using the dog as a heating pad (the actual heating pad would be too hot).

Riki
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duchessmom responded:
I have that same pain in my hip -- that's exactly how I've described it, feeling like my underwear is too tight! How amazing to hear that someone else has the identical sensation. And I also use my dog (cocker spaniel) as a heating pad! In the middle of the night sometimes I fantasize being able to shoot a big dose of novacain right in there ... but haven't found anything that relieves that pain, it's too sharp and specific.

And your fatigue (and amount of sleep) sounds sadly just like me, too.

I am so sorry you're going through this, and paying for your exertion of last week. I hope all goes well with the lawyer, and especially with the judge in November. You've been through so much, and keep trying, and you deserve something good.

Hugs.
 
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LadeeEmpress responded:
So glad to read this...I had the same type of weekend. I just couldn't drag myself out the bed then got in to a huge arguement with my husband because he called me lazy. Then went on to exclaim that I use MS as an excuse. He sees other people on TV or whatever that have MS and still are out there. First of all, MS is different for everyone and second of all...I work TWO jobs, go to school, and I am a mom to three children (16, 6, and 1). Forgive me but I think I am doing pretty damn well for someone with MS or shoot some people WITHOUT MS. I was so pissed. He just doesn't get it...
 
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k7073 responded:
Hey Riki,

Your situation sounds like mine. I work 8th graders at a middle school as a paraprofessional. I started back working on August 1st and on August 9th I had to leave work because I was in so much pain. I've been on medical leave since then. This is the same problem that I had last year. I took FMLA , but everytime that I return to work I have the same problem plus blurred vision, burning and pin feeling in my feet and a lot of other things.. I also had the problem where my left hand gets weak that I can't hold a piece of paper. I did try for SSDI and I was denied. They told me that I do have some restrictions but because I worked as a Data Entry Clerk before that I should be able to find that type of work. I was just diagnosed in October 2010 and all of this is really starting to get to me. I don't know what to do.
 
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LadeeEmpress replied to k7073's response:
How could you do data entry if you hand isn't able to function? Ridiculous...have you sought legal advice?
 
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rikilynn1982 replied to LadeeEmpress's response:
I'm so sorry your husband doesn't understand. None of my friends and family have ever said they think I'm just lazy, but I know them well enough that I'm certain a few of them have thought it or possibly even discussed it behind my back.

This disease is hard on everyone. They have to watch the one they love suffer a disease that they don't understand and don't always know how to help with. My best friend once told me it was like the disease stole her best friend. On the outside I still look the same, but all the things I used to do aren't part of my life anymore which makes it hard to recognize me sometimes.

I do my best to remember that this doesn't just affect me and that as much as I mourn the loss of the life I thought I would have they have to mourn that same loss.

Have you checked the NMSS website? They have a lot of resources and stuff for caregivers/spouses. Maybe he just needs some help understanding or a place to vent about how much the disease has messed with his life too.

I hope he comes around and if you're working two jobs and raising 3 kids and a husband, I'd say you are doing very well.

Here's to better days...
 
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hackwriter replied to LadeeEmpress's response:
Ladee,

Darn those MS over-achievers! Those athletes who make the cover of MS magazines as they cycle or run cross-country. Able people might think the disease makes us bionic!

Your husband needs to know that, in addition to being athletes before the disease struck, those people are either lucky enough to go into complete remission between flares, or they have benign MS, or their symptoms are mostly sensory dysfunction with either mild or absent motor deficits. Most of us have trouble walking across the kitchen without a cane, a walker, or grabbing onto furniture and walls! And let's not even talk about fatigue...

As Riki mentioned, it is hard--if not impossible--for our loved ones to understand this thing. It takes time for them to learn how to handle having an MSer in their lives. I had to teach my people about it, and over time, they have learned how to deal with me in more supportive ways.

I wish you good luck as you kick hubby along that learning curve, LOL. (Sometimes that's what they need!)

Kim
 
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mmthlvr replied to hackwriter's response:
Ladee Empress, you rock!!!! Your husband has no right to call you lazy. Remember that next time he gets a cold & has to stay in bed for a week:) I'm so glad this web site is here, you are the only ones I can turn to and know you understand.

My employer took me out of a job I have been doing for 12yrs and put me elsewhere. They thought it was in my best intrest, right. I was in tears in her office today explaing this new job is to hard/confusing. I need to be in a job that I'm familure with, even my Dr agreed. I told her I was embaressed & humiliated having to ask the same thing over & over again, not to mention all the mistakes I'm making.

I had no problems in my old position. I'm a liablility, it's that simple. The people who are in my old job are terrible, customers complain & they make tons of mistakes. The only difference is they don't have MS!!!! I'm looking to cut my hours & go out on part time disability. Has anyone ever applied for part time disability?
Hugs
Tammy
 
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LadeeEmpress replied to mmthlvr's response:
I am curious about part time disability. If you find out anymore information, please let me know.

Jenn
 
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mmthlvr replied to LadeeEmpress's response:
I see my Dr next month & I want to discuss this with her. My reg Dr thinks it's a good idea that I start working part time but didn't have any info as far as disability goes. I'm going to call the MS society & see what they can tell me. As soon as I get the info I'll let you know.
Hugs,
Tammy
 
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LadeeEmpress replied to mmthlvr's response:
Thanks a bunch!!
 
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MrsCRG replied to LadeeEmpress's response:
LadeeEmpress I just want you to know you are a beast!!! My hubby use to tell me I'm lazy too, until I had a talk with him. I actually had to talk to all of my immediate fam and friends. I think our husbands, family, and friends have to adjust to the changes that we have to as well. My aunt came to visit and she told me to run. I looked at her like she was crazy and said if I can't barely lift my leg to walk what makes you think I can run? I really wanted to call her an idiot but that wouldn't have been nice. Q&A would be nice to have with everyone in your circle. Just to explain some things and answer questions. On those bad days we do need someone to be attentative to our needs.

I am thinking about applying for SSI, since I was fired last year from my job for taking FMLA. Since then the stress from not having a job has taken affect and I have gotten worse. I understand about the fatigue and sleeping alot. Right now as I am responding I can stop typing and fall right to sleep and sleep for about 3 hrs. I too have weak hands. 1/2 of my left hand is completely numb and cold. And I'm afraid of going out by myself because I'm afraid of falling. So please update us on your hearing with the judge.

Guess what I am only 28 and been dx for six years. I just started getting worse last year. I feel like my life is passing me by.
 
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LadeeEmpress replied to MrsCRG's response:
Thank you!! I need to hear that sometimes because I begin to think I am letting myself and other downs at times.

How did they fire you for taking FMLA? That is the point of the law, to allow people like you and I to have the time they need to recover. Have you considered a lawsuit against your former employer?
 
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rikilynn1982 replied to MrsCRG's response:
CRG, I'm 28 and next week I'll mark six years since my diagnosis. I often feel like my life is passing me by too. Especially when another friend gets married, has another kid, gets a really great job opportunity, or takes a vacation.

I will definitely keep everyone posted on how the hearing goes. My meeting with the lawyer this week was just to update my medical records and allow the nurse that works for my lawyer's office ask me a few questions.

I'm pretty sure they can't just fire you for taking FMLA. I think you definitely have a case to file a suit against them for wrongful termination. At the very least you should have a great case for unemployment benefits.

If you are going to file for SSI, I'd do it sooner rather than later. It usually takes at least 6 months to hear from them on your first filing. Some people are easily approved and then people like me with invisible and "mild" symptoms have a long road of denials and eventually a meeting with the judge, which is stressful just thinking about whether or not it will be approved.
 
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MrsCRG replied to rikilynn1982's response:
Yes ladies I have a lawyer working on it. Just a little skeptical about applying for SSDI or SSD which ever it is lol. I'm just hoping and praying this passes so I can complete my goals. But it is what it is for now. I can only live for today and pray tomorrow is better. I do know I should qualify for either but as you said they will look at me and say "Oh she's fine. Nothing is wrong with her." I want to work but unfortunately my body tells me differently. The uncertainty is what gets me.


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