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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TGIF....Not Any More

It is funny how your outlook on things change when you are no longer working. When I was working I looked forward to Fridays. It was the last day of the work week, the day you got paid, the beginning of the weekend. Now Friday is the day I do my injections. I SO do not look forward to that.

It has been a week since my last post. I have done a lot of thinking this week. It has been somewhat of an emotional week. My last injection hit me pretty hard. Just when I thought my body was finally starting to get used to them, this one really put me down. The pain was just as bad as it was the first time I took the Avonex. I had chills and fevers and no matter what I did, I just could not seem to get my body to quit aching. I even tried to soak in the bath, nothing helped. It lasted a lot longer this time too. Advil, nothing seemed to help this time.

The whole reason I take my injections on Friday nights is so that my family can help over the weekend and that way I can get Nathan to school, and do everything that needs to be done during the week. It is not a big deal on Saturday & Sunday if I can't physically get out of bed and he sleeps in, because there is nowhere that he MUST be early in the morning. Church doesn't even start until 1:00. To take the injection on Friday just does not create a problem like it would during the week when I need to wake him up for school. This is why I do it on the weekend. Also, because if I do have a bad reaction and need the extra help, my parents don't live far and my mom has the weekends off, so she can always come pick him up and he can stay at their house. During the week when she works, this is not possible. Isn't it fun always trying to juggle schedules, always having to have a back up plan?


Do you find it difficult to explain to your family and friends what is going on with you, how you are feeling? I find that it is hard for me to express what is "REALLY" going on with me. I don't always know how to make them understand, or should I say help them understand what it is like. Sometimes I think they just don't really get it, because they don't really see it. My son does more than anyone, because he lives with me. The days where I wake up and can't feel a leg, or my arm is numb, or I can't walk, or am unable to get out of bed, they don't see that because I don't go to their house on those days. On the days where I am in so much pain that I lie in bed and cry or am so depressed that I go back to bed and sleep, or have such weakness and fatigue and I can't move, those days they don't see. Or if they do see me they don't really see me because I look okay because even though I can walk, I may be a little slow or have a limp, I can still walk. Sometimes I get comments like, "Why can't the doctors just give you something to fix that? or Why don't they do something for you?" I just don't think that people really understand that there is nothing to "fix" this illness. That IS the problem. I would be curious how all of you deal with this with your family and friends. I know they just want the BEST for me, and are just as frustrated, but what they need to understand is that it only causes more stress. We are all frustrated, the patients, families, doctors, all of us. There is no easy fix. I wish there were!

This week has been spring break for my son. I love him more than life itself, but I am SO happy he will be going back to school next week. Between me not feeling well this week and basically stuck in bed, and him being board out of his mind. He has been so grumpy. He came home from camp grumpy. He was so tired and worn out from being up in the mountains for a week. I was so happy to have him home after being away at camp for a week that I didn't care, but that got old really quick. He got some sleep over the weekend and then he was okay. Now, he is just board. I just think that he is ready to go back to school. Then this morning, he was so sweet. He made me breakfast in bed. Kids are so funny that way. One minute they can be the biggest pain, and the next, the biggest blessing. I know my health really gets to him. I wish there was some way I could just take away all of his worry and fear. I wish he did not have to ever suffer because of my health.

Allergy season has arrived. I was hoping that I was not going to have allergy problems since moving here, but unfortunately I think I will not be able to escape them. Twice this week I have had major attacks. Then last night I had another one. I take prescription allergy medication everyday (with a decongestant in it) and that did not help at all (one of the days the attack was early enough in the morning I had not taken my meds yet). I have gotten hives and the whole bit. It is horrible. I hope this is not just the beginning of what is to come. I went through a whole box of tissues, my allergy meds did nothing, and my asthma meds did very little help me. My attack was at like 2 a.m. this morning, and because nothing else would work I had to go out in the middle of the night to buy some benadryl. Nights like this really make me miss living in a big city. I had to go to 3 different stores before I could find a place open that carried benadryl at that time of the morning. It is bad enough it is 2 a.m, but it is cold, I am sick, all stuffed up, can't quit sneezing, vision is blurry, and my legs are numb. This really sucks. Reminder to self: Always keep some benadryl at home, just to be on the safe side. :) Hopefully I won't have to take too much benadryl. It knocks me out. One positive thing about this time of year: It is beautiful. The sun is out and the flowers are blooming.

What a small world it is. Christina, who has a MS Blog at http://myjourneywithms.blogspot.com/ just happens to live in the same place I do. How crazy is that? When I started this blog, I NEVER thought I would meet one person, let alone all the wonderful people I have, but I especially never would have imagined I would meet someone who lives in the same town. This whole experience has been helpful and I am continuously inspired and appreciate all the support you each give me. As you all know, this illness is a constant struggle. There are so many ups and downs. It is never easy. So, I thank you for being there for me.

I hope you are all doing well. Please take care of yourselves. Have a good weekend and do something nice for yourself. :) Eat some dark chocolate! Not only does it taste good, it is good for you! (Or at least my neurologist in Salt Lake always claimed dark chocolate helps with headaches, and I have heard it is heart healthy too)

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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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