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Results Are In....Now On To The Next Test

What an interesting day today turned out to be. I had physical therapy this morning. It was such a different experience for me as I am so used to doing my physical therapy in the pool. It was nice to learn some exercises that I can do at home. It gives me a starting point so that when I am completely done with physical therapy in two weeks, I can continue to do the exercises on my own.

This afternoon my doctor had me come in to go over the results from my bone scan. It turned out the reason the results took a little while to get to my doctor was because the hospital lost the original dictation and had to have the scan re-read. What a pain! Fortunately the scan was basically normal. There is 'the appearance of increased uptake within multiple bilateral lower anterior ribs' but that can be monitored and may not be anything to worry about, according to my doctor. He said there is no guarantee that there is nothing going on, only that it is unlikely it would be cancer (that is good, I will take that) and that because of my history he will keep an eye on it. The scan did not show why my bone isoenzymes are elevated so he wants me to go in for a bone densitometry (DEXA) scan. They scheduled that for Monday morning (this time with stat orders). This is a pretty easy test, it should only take about a 1/2 hour.

From there, I had to rush to pick Nate up at school so that I could take him to his appointment. I decided to start him with a counselor because he has been having a really difficult time lately, between us moving here, his own problems, dealing with my illness, etc. I just want him to learn to find a way to be okay with all of this. How do all of you help your kids accept your illness? Nate gets so angry sometimes, he used to be okay with it, but I think that now that I am home and he has to see it more, it is harder on him. It was easier when I worked, especially when I was working in the medical field, and he was younger, I could hide things from him easier, I can't hide things from him like I used to. Not only does he have the right to know and understand what is going on, he can see it now. When I worked in medicine (when I was sick before) I would just arrange my work schedule so that I could go get my chemo after work one night and my daycare lady, Trisha, who was like a member of our family, would keep Nate late for me so that he would not have to see how the treatment would make me sick. We all worked together, it just worked. Now that he is older, he sees everything that goes on, he is too smart. Plus, I am not sure I would want to hide it from him, like I did then. I think now it would hurt his feelings and make him more angry.

Any suggestions on how you all handle these things would be appreciated. I think that is one of the more difficult parts of this illness, at least for me it is. Although there are days where I am in pain, tired, etc. (okay, there are a lot of those days) I would take that any day of the week over one day of my son being in pain (sad, angry, etc.) because of my having this illness. That is what gets me the most, him having to suffer because of my having this. That is the worst!

Tomorrow should be a more relaxing day. I don't have one single appointment scheduled, that will be nice. :) I need to go do the laundry, that won't be bad. Nate gets out of school at 1:15 and then my sister is coming over to visit. It is her 23rd Birthday on Saturday! I hope you all have a great night and an even better Friday! Take care.

4 comments:

mdmhvonpa said...

My Take: Be honest with your kid but keep it soft. My mom had ms and hid it from us ... bad choice. If I had knew of it, my years of struggling with the DX of ms would not have been so long.

personallog! said...

I agree just stay honest with him and tell him you love just as much as you did before DX. Keeping him in the light will make it easier in the long run. I really wish I could help with this.

Dave

Jaime said...

I have never hid the MS from him, as he has been old enough to understand it better (it was the cancer symptoms that I was able to hide from him, when he was younger). He knew that I was sick, he just did not have to see it and did not understand the difference between something like cancer and a cold. Now that he is older, he does know the difference.

I try so hard to be open with him and to talk to him about what it is, what is going on, and how it is okay. I try to explain that everyone has things happen to them and we just deal with the things that we are handed in life. Those things make us better people..etc.

He just does not want to hear that right now, he just wants his mommy to be okay, and does not understand why I am sick but all of his friends mom's are okay. He has that "It's not fair" thing going on right now. I am hoping it is just a phase, he looks at other people's lives and seems to think they have it so much better. He has mixed feelings because of it. On one hand he loves that I am at home, but hates I am sick. He loves spending time with me, but then sees his friends getting material things that we now can't afford because I am not working. This is where he is having to grow up faster than he would like, and I feel bad for that, but in some ways it may not be bad. I hope he can learn some valuable lessons, like responsiblity out of all this.

He will be okay, we are close and communicate a lot. The one thing he knows is that I am always there for him. We have a very strong relationship. I worry about how angry he gets because I know that it will not do him any good to be angry. He must find a way to accept this, life is hard. I am sure that once he does accept this, he will be just fine. It all takes time and as long as I continue to support him, it should be okay. But, as I am sure you know, as a parent, you never stop worrying.

Thanks for the advice. Please take care.

Jaime

Jaime said...

Thanks Dave, I love him with all my heart and probably tell him more now than I did before the diagnosis. It is amazing how this illness can put the little things in perspecive for you! I do my best to always be honest, it is so important for him to grow up to be a man of his word, honest and true. If I don't teach him that, who will? Thanks for everything, you're the best! Jaime


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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 story...my life with MS (among other things).

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