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Once again

Friday, March 14, 2014

So. Specialist says it will take 9 months before we know if the meds are working.

To say I was disappointed is an understatement.

But I went back to work full time, and am managing. Somedays not well.

Because of the steroids I gained weight. So I need to lose that again. Hopefully one day soon I will be able to start working out again.

It's such a slow road.......somedays it's too much.

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UMBILICAL 3/14/2014 5:15PM

  Keep going

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Dare I hope?

Wednesday, November 13, 2013

7 weeks. That's how long I've been on new medication. 4 years. That's how long it's taken for me to feel some sort of normal again. How long will it last? No idea. How much am I going to enjoy it? As much as I can.

I have started slowly into exercise. Doing only crunches and leg lifts. Hoping I get some toning from it. Not looking for weight loss right now. Just routine and to build up some stamina. I don't know if I am ready to jump back into the Jillian micheals quite yet. I have way more energy thanks in part to meds. Thanks to finally sleeping all night. Another first ! Still only 6 hours or less. But at least it's in a block not all broken up

I am eating more normal again a first in 4 yrs. I am trying not to get too hopeful. Cause it just seems that's when things take a turn for the worse. But quietly in my heading I'm excited.

For those who have a chronic illness you will understand my excitement. The pain free days. The feeling of being somewhat normal. But also the fear that it won't last. The fear that tomorrow you will wake up and be back in the nightmare. But for today. I will enjoy feeling almost as good as everyone else.

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CJNMENU 11/13/2013 9:59PM

    Meowmeeow thank you for that! Having a disease that limits you is a feeling like no other. Thank you!

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MEOWMEEEOW 11/13/2013 9:51PM

    Wow that's a huge breakthrough! I will be excited for you, even if you're afraid to be excited yourself. I have an autoimmune disease, where my ability to do things and pain comes and goes. By all means, savor every pleasant moment that you get! I prayed just now for your progress to stay, continue and even grow!

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Life is unfair

Friday, October 18, 2013

As I woke up and got moving today, I realized how true that statement was. You see I deal with pain and illness every day. And the day that I get up and realize today is going to be one of those days, I get upset, angry, annoyed. I don't understand how its fair that even though I deal with a chronic illness and chronic pain daily, why I have to have these little extra symptoms that just seem to push me over the edge. Do I not deal with enough daily?? How is it fair???? Why cant someone who is healthy deal with some of this???

Which isn't fair either. And I really wouldn't wish it on anyone. But there are days, like today, where I would do almost anything to just get rid of one symptom. Just one.

People around me don't always get it. I say no a lot. I turn down invites to visit, to go out, to socialize. I cant always eat, I cant always be happy.
I don't want sympathy. I don't want you to feel sorry for me. What do I want? I want everyone to just accept me and accept what I say. If I say No, not today. You say ok no problem. You don't try and convince me otherwise. You don't tell me you know how I feel. You don't guilt me into going somewhere.
None of that is helpful. It only succeeds in frustrating me more and making me realize how much in life I do really miss.

I don't complain very often about what I go through. Mainly cuase it wont change anything. I can whine about having this disease, but you know what it will still be here tomorrow. It wont change anything. So why complain? Pain isn't going to disappear cause I yell at it. Although that would be nice!! I get on with my day and I do what needs to be done. What other choice to I have? I could I guess sit and feel sorry for myself....but again, where does that get me?

I don't often let my disease and pain take over. I generally fight it with all I have. But once in a while I get tired. I get tired of always trying to win and those days, like today, I just want to curl up in a corner and let it all take over for the day.

Sometimes family memebers say things that are very insensitive. Friends too. I have been told this week that I eat what I want when I want......well obviously this person missed the memo on me....that is the point, I cant eat what or when I want. Yes it is fun to live on crackers and water somedays. THat must be what they meant..!!! Jealous are they????
Another is: I explained how I cant stay late for a social event, due to other commitments the next day. My body gets wore out and tired. And she informed me that she is the same.......ummm?????

It may seem cranky to you healthy people how I seem to judge you and act like you don't get it. But do you????? What did you eat today??? ?Did you have to stop and wonder if what you were eating was going to hurt you later? Did you wonder if what you ate for breakfast meant you weren't going to be able to eat the rest of the day?? Did you have to think about it at all?? Or did you grab your coffee and toast and not give it a second thought? You see I have to plan every bite. Especially on days when I have to leave the house.I have to plan my actions for the day. Or I will be too exhausted to do what needs to be done later. Or in too much pain. Or both. And somedays it doesn't matter, somedays I have to suck it up for my kids and try and act somewhat normal for them.

On my list for the last month and half has been getting back into an exercise routine. Do you know that there has been ONE day in that time that I have been physically able to exercise??? ONE. Not due to being lazy or not finding time, cause I will make time. But due to pain or illness. One day. How depressing is that?

This is my rant. Life is unfair, and somedays it seems really unfair. The next time you wish your cold would go away, let me know. I will trade you in a heartbeat.

And yes this rant is due to someone in particular so those of you that know its not about you, please don't take offense. I am allowed to rant and complain ....if you don't like it, please just ignore it. It is my blog afterall.

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CJNMENU 11/2/2013 6:13AM

Thanks! I am feeling better. Although never great. But these days I take what I can. Hoping it just improves each week. And ive started exercising. Not much but hoping its enough to get in a routine.

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ERICA1212 10/30/2013 5:26PM

  Have you had any improvement?? Hope you're feeling a little better :)

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ERICA1212 10/18/2013 3:10PM

  I understand you COMPLETELY and am in the same boat. I often find myself crying in frustration that I can't live a normal life...and then try to tell myself, well, it could be worse - it could be terminal - I could be unable to ____ (insert anything that I AM able to do here) .... but I know that doesn't really help.

I have to believe that we will all feel better eventually. But some days it's just so hard to understand why some of us skate through life and some of us have to struggle just to get through the day.

I feel your pain!!!!! And I'm sorry you have to deal with it. Get better soon.

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ERINLINDSAY83 10/18/2013 12:01PM

    I am on the exact same page. I understand completely. It sure is sucky. Hope you have a better rest of the day and get to enjoy your weekend.

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Been a month???? Really?

Wednesday, April 03, 2013

Crap. I knew it had been a 'few' weeks since working out or tracking or blogging. But i didnt realize it was a month....well almost! Last blog was march 7. Wow.

Basically for the month of march i have felt horrible or been so very busy i havent taken time for myself.....bad bad bad.

I worked out today, 10 min of the JM kickboxing. I like it!! I dont do the jumping jacks as they shake up my tummy too much and then send me running for the bathroom. I modify any of the jumping movements so that i am still getting the cardio but yet not making myself sick.

I feel better knowing i have worked out. I wrote it on the calendar, i took body pics. Something i have never done. I am not sure if it will be motivational or depressing but either way i did it.

I am hoping to take pics every week and maybe just maybe after a few weeks i might see a slight change. This kickboxing program i believe is 21 days. I am really going to try and finish it out. of course i may not be able to do the entire workout each time so i need to compensate for that . But if i can manage 21 days and notice a change i will be thrilled. NOT wanting to look like a super model. Just want to fit into my own clothes!!!! Drop another size.......a couple more inches.......thats it. I jsut want to feel good in my own skin again.

Been crazy in my personal life, met with a new GI and have more tests booked, have some personal issues i have to work out, oldest daughter is getting ready for college in the fall....so many changes. Trying not to let the stress get to me, or i will end up sick again.

It might even be safe to say the snow as stopped....finally. Up until an hour ago it was still coming down! Seeing some green grass would sure help!!!

Have a meeting to nite then a get together with some girls, i am hoping and planning on going. As long as nothing comes up......fingers crossed!!!

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NEPTUNE1939 4/3/2013 11:19AM

    Setting health priorities will help. emoticon

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Why bother?

Thursday, March 07, 2013

So i have a friend, not a good close friend but a friend. You know, the ones you can chat with but not about anything too personal. A social friend i guess. Anyways, she has made plans twice. And twice has not shown up. I really dont believe her anymore when she asks if i want to do something. This time it was shopping for another friend's surprise bday party. But again, she hasnt shown up or txted or anything......i kind of expected it but at the same time............well doesnt matter. Its all fine though, i am a big girl and can manage to do things on my own. I dont really enjoy shopping all that much, which is why i usually drag one of my girls with me. More jsut to keep me from swearing at some stranger who is walking slow in front of me....kind of like road rage, only in the store!!!

So i am down another lb. yay!! I am very happy. I thought with the way i havent been able to workout lately that i would be up. Good to know that what i am doing is working. That is great great news! I didnt reach my one goal but i had a week of flare ups to slow me down.And sick kids......but i managed a little here and a little there and well it must be working. So I do plan to get right back into it next week. Which will be hard as its spring break and we have plans. BUT even one good day with one good workoout will make me happy.

Well i guess i am off to do some birthday shopping on my own.............

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JANINE8969 3/12/2013 7:24AM

    I know exactly how you feel with this social friend. I feel as I get older, I need people in my life with substance and they need to put effort into a friend relationship. It cannot be just a one way street.
I am so HAPPY that you lost another pound!! YAAAAAY! I think since you don't enjoy shopping...you shouldn't do it. I do not like it myself and usually just get gift cards. I don't know how I would feel about shopping if I was thinner but it has never really been a priority for me.

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ROBERTAUP 3/7/2013 10:12AM

    Good for you to accentuate the positive!

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STEPHANIE302013 3/7/2013 10:07AM

    I hate it when people just don't show up. It doesn't take that much extra energy to call or text - and it's just common courtesy! Take deep breathes with the shopping mall slow walkers out there - no mall rage! Have fun shopping!

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NEPTUNE1939 3/7/2013 9:46AM

    Enjoy! emoticon

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