This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
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Results Are In

What a day yesterday ended up being. I had my doctors appointment to get the results of my DEXA scan. It turns out that I have Osteopenia, which is basically the start of Osteoporosis. I have it throughout my back and hips (or at least this is the area where they did the scan). The back showed much more bone loss, which did not surprise me at all considering I have had pain in my back for a long time. I herniated a disc a few months ago and things like standing over the stove to cook dinner makes my back freeze up, so I was not really all that shocked. I also was aware I was at high risk for this illness. I had a hysterectomy at such a young age (24) and went through menopause at 25. I was hoping my age would be an advantage, and the fact that I was taking hormone replacement therapy (HRT), I hoped that would help. Plus, until the MS was diagnosed I seemed to be doing much better. Such is life!

So, what is the next step? Well, there are some positive things and negative things to look at. The positive things are that I am young. The younger you are the better chance you have at reversing the bone loss. Plus, I already eat really healthy. I work with a nutritionist and for the last several years (at least 3) have been watching what I eat. I managed to lower my cholesterol, prevent becoming diabetic, etc. all from diet. So, that is a big plus. All of this is good news in helping to keep the bones healthy. Plus, I am exercising more. That is good. Also, as much as I hate to take more pills, I am now on calcium plus vitamin D. In a couple of months once my body had adjusted to taking those supplements then I will start taking an osteoporosis medication (i.e. Boniva or Fosamax).

The negative...well, I am not doing the right kind of exercise for the bones. What? That is what I said. I thought any exercise would be better than none, and it is! But, this is where it gets tricky for me. See, for MS you need something to take the resistance away, like swimming because if you have too much weight or push yourself too hard than you can do more damage. That is not good. There is the mobility issues, which is why the pool is always good because you can still do the work. Plus, for me my asthma does not act up in the pool like it does with other forms of exercise. Well, for the bones you have to push yourself and use weights! I don't have a problem with weights, but my doctor says that you have to use enough weights that you feel it the next day. So, the tricky part is finding a balance. Enough weight to give you that pain the next day working it good feeling, that WILL eventually go away in a month or two when your body is used to working out really good and not over doing it to the point that the MS shows its ugly face. I think maybe I need to consult my physical therapist or a personal trainer on this one.

No matter what, my goal is to get as healthy as I possibly can because I am tired of not being able to do things like I used to and there are still so many things I want to do and plan to do. In order to do that I need the energy to do it. Plus, I figure the best way to fight this illness is with diet and exercise. Of course I must continue to take all 20 or so meds (the number just keeps going up, one day I will have to make a list on here) and getting the rest, reducing stress. Those types of things. Every little bit will help. I plan on being here to see my son graduate from high school and get married and have kids. I want to be a grandma who is able to play and have fun with her grandchildren, not stuck in a wheelchair! So, what better time than now to make that happen....and maybe there will be a cure before then anyway (one can only hope).

After the doctors I had to go do my grocery shopping. That is always fun. Actually I don't mind doing the grocery shopping it just takes up so much of the day. This is how I eat healthy and save money. I am one of these people who plans meals and when I do my shopping I do it for like a good two weeks or month at a time. I used to only get a weeks worth at a time (and granted some things, like bread, milk, fruit, veggies that need to be fresh must be purchased each week) but I found that I save if I plan ahead and purchase things according to a list. Things like frozen food (meats that I can freeze, frozen veggies I can steam, etc.) and refrigerated foods that will last. Plus the dry items like my brown rice. When my dad had his stroke and I was going over there and helping out, doing all the shopping for both houses and cooking for them, they were amazed at how much we saved. They eat so much better now! I am not sure they shop better though. I don't think my dad could ever be that methodical about it, lol.

Nathan and I got into it again last night. It seems like every night there is something. He is such a good kid but man, he can be so stubborn sometimes. Last night it was that he wanted his hair cut. Not a big thing at all. When he got home from school he wanted to go and watch the baseball game next door. Okay, I am cool with that. Then he asks me to take him to get his hair cut. I told him if he wanted to get his hair cut he would need to be home by 5:00. He was late getting home and so pissed off when it was too late to go and get his hair cut. He threw a fit like a two year old. I am SO not looking forward to the teenage years. I understand that he has anger and a bunch of emotions that he does not know how to deal with, but this is ridiculous. He can't act out every time he does not get his way either. And, I have to not let it get to me. That is the hardest thing. I hate to see him upset, but I have to just ignore it because sometimes it is just a behavior thing. I love him so much but I can't allow him to use my illness as an excuse for bad behavior either. That is just not okay. It is okay for him to be angry and upset, sad, whatever about my illness. He just needs to learn how to deal with those emotions. It is not okay for him to use it as a crutch, as an excuse. I won't allow that!

Shortly after all this happened I was talking to Justin because sometimes I feel like I just can't take much anymore. Over the last year or so I just can't seem to handle stress like I used to. Stupid MS! Justin said to me "Have you talked to your parents about all of this? You need to talk to them, you need some support that is there" I said I don't think they really want to hear about this stuff, meaning things to do with the MS. Of course they care about what happens to me and Nathan. My parents are supportive, it is just that sometimes I feel like I can't really talk to them about how I am really feeling (which is in part why this is so great, if they really want to know, they can read it here). I know they care and they love me very much. It has been a very difficult year and sometimes I think they just don't want to hear about it. Not that it is a bother for them, well, maybe sometimes it is a bother, but mainly that they just don't know how to deal with it either, so it is easier to just not talk about it. At least that is how it seems. In my fathers case I think he blames himself for my illnesses (maybe not the MS but everything else, which I think in his mind he probably believes lead to the MS). Sometimes I feel like I am just not strong enough, like I am weak or something, how stupid is that? I used to be able to handle so much, now I feel like I am loosing my mind. I am depressed and I don't feel like I really have much of a support system to rely on when thing fall apart.

Anyway, when I was on the phone my mom called and she was great. So supportive and put things in perspective. I think that sometimes, at least for me, it is just that I need to ask for help. Sometimes the problem is not that there is not a support system available or that the people we love are not being supportive it is that it is harder to ask for their help when we need it. The reality is that I will always have a hard time asking for help. I am not good at that. I have never been very good at that, but I need to learn to be better. I still think my parents are not really big on talking about all of this, but more because it is hard for them too. It is hard for me because I am living it and going through it, but it is hard for them because they have to watch their daughter suffer, not knowing from day to day if their child will be okay. As a parent I can only imagine what hell that must be. It is always so obvious to me how difficult this illness is on my son and on me, but last night it reminded me how hard things must be for the other people I love. It is not necessarily that they just don't want to hear it, they are scared too!

After such a long and emotional day, I went to bed at a decent time. Then I slept in this morning. That was nice as I have not been sleeping well lately. My sleeping schedule has been all screwed up for some reason. I am not sure what that is all about. Anyway, today has been a pretty mild day. I picked Nate up from school early because he had an appointment. He is in a much better mood today. :) As for this evening. I plan to relax, catch up on some TV shows and spend some time with my son.

I hope you are all having a great night. Take care and do something relaxing for yourself. By the way......over 800 visitors. That is awesome!


personallog! said...

I hate to see my friends and people I love go through the stress side of ms. Its horrible and very stressfull to have to rely on others for a happy life. You are doing a great job and its great to see you get some sleep, but I am missing you and your over night chats. I am here if you ever have them again.

Keep your chin up!

personallog! said...

Oh forgot to say. Great choice on the tune! Rock on babe!hehe


amanda said...

ugh thos darn 11 year old boys. It is sooo hard. Mine has been the same way as of late. I'm pretty sure that it doesn't have a whole lot to do with the MS factor as he has been living with through this disease with me for 5 years. I too am terrified of the teenage years and they are creeping up on us sooo fast...

Scary huh?? Hope things go a lil better for ya..take care

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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my life with MS (among other things).

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