I had too many blogs going on so I am downsizing to one blog. Please come over to the new blog for all updates.
http://penelopemariesmith.blogspot.com
This will be me updates and MS updates.
Thanks
Penelope
To put a long story short, I had to have some lady surgery which thrust me into a terrible relapse which just keeps getting worse. I had to withdraw from the study for some real treatment. I havent seen my MRIs in a year and a half and have no idea where Im at except I know my symptoms are worse. I have an appointment tomorrow with a Neuro about an hour out of town. The VA is now picking up the bill because they have rated my condition service connected. I am only getting 30% but the woman with Disabled Veterans is helping me with the paperwork to get 100%. I currently cant feel most of my body and have not left my room for 2 weeks because im doing good to get to the bathroom and back. My husband moved our mini fridge into our room so I have easy access to drinks and food which i usually pick up on my way to and from the potty.
I am worried that I am in Progressive MS. Hopefully they will request an MRI so they can see if my lessions are getting worse. I have learned that I need to start being more honest about my condition. I try to pretend as if everything is ok, but in honest it isnt and to get the treatment I need I need to lay it out as it is. I have been trying to protect my family and I guess my own sanity from worry but it has gotten to a point where that is just not possible anymore.
I plan to ask the neuro for a recommendation to the VA for a wheelchair. I bought a cane at walmart to help me get to the doctor but a chair would be so much nicer and faster. I also hope to get him to sign off on a handicap pass for my car. My mother was here for a month helping me and she has one and boy was it convient and helpful.
I will try to keep up with what is going on and maybe give some back info.
Penelope
I have a long day on Tuesday full of many different doctors appointments. I am really dreading it.
I wish it were Wed already and it was all done!
Most of the time I cant remember if I have taken my pill for the day or not.
I have a hard time remembering what I am doing while Im doing it, so its hard to remember what I did 5 mins ago or even longer.
I usually take it, but just didnt have a way of know for sure.
I tried making a slash on the calander, but then I would forget to make the slash, so that turned out to be totally pointless. I also need to know what day it was if I did miss so I can tell the study.
I have figured out a way that will work with my memory problem.
This way if I cant remember if I took my pill, all I have to do is count the pills in the bottle. If I have 1 too many then I know I forgot to take it.
This is very helpful and helps me tremendously.
May not make sense to everyone, but it works for me.
Read more...
I would really like to blame it on the MS, but the truth is, Im just not very observant sometimes. The problem arises when I get focused on one thing and then not notice the other things outside of that.
The problem all started when I couldn't find my short scissors. I should have known better and just kept looking or do what I eventually had to do after I injured myself and go to the bathroom and get the little scissors in my manicure set.
But no, I just got the regular scissors and set off on my project. I was trying to cut yards of yarn. So I was sitting at the kitchen table while my husband was washing dishes, chatting and cutting lengths of yarn. So of course I wasn't paying any attention to anything else but the yarn and my husband. That is how it happened.
I wasn't paying attention to the fact that the long scissors extend far past the length of yarn that I was cuttting and ended up cutting my finger with the length of yarn. Luckily my reaction was quick and I dint cut all the way through. I was about a millimeter short of doing so. So I cleaned up and put a bandaide on and got the little scissors out of my manicure kit.
So now I have to get myself another pair of short scissors.
For those of you who haven't heard of Twitter, it is a community of people that takes elements of myspace and a blog and minimizes it to 140 characters.
Users can post quick messages either to their followers or in replies to others post. The can only be a miximum of 140 characters, so it makes you have to get really to the point.
This is called a Tweet or a Twit.
I have seen this around for some time and finally decided to give it a try. It is not to hard to use and before you know it you are hooked. Even Obama had a Twitter account during the election. It is still up but hasn't had a Tweet since mid Dec.
It is a great way to connect with friends, customers, followers, or strangers. It only takes a click of a button to follow or unfollow anyone on Twitter.
There are newsgroups that will Twit the news regularly as well as many of the bloggers you follow are probably on there.
For those of you on Facebook, there is an application that will update Facebook with your Tweets. Now if they could just do that on Myspace, I would be killing 3 birds with one stone. Maybe it will come in the future and maybe we should send emails to Myspace to add it. If one exist that I do not know about, someone PLEASE email me.
------------------------------------------------------>
If you look to your right you will see that I included a whole section of just free Twitter resources. There are all kinds of apps, buttons, pictures, and more for Twitter.
------------------------------------------------------>
I take my clinical drug, cinnamon, cranberry everyday.
2 cinnamon, 2 cranberry, and 1 clinical drug pill.
Well somehow, I took out 2 clinical drug pills and downed them. I realized this as I was swallowing so there wasn't much I could do about it. Except make myself puke. Just for those that want to know, I hate puking almost as much as I hate needles.
I realized as in mid swallow that the pills felt way to sall to be either of the other products. But it took that information too long to process that they were down the hatch and gone.
I put a note in my calandar that I took 2.
You have to keep up with any pills you miss, or in my case when you take 2, and if you start or stop any other medications. You also have to keep up with any conditons that come up, but thus far, Ive only had a cold since I started this drug.
Another reason I think Im on placebo. Ive always had an exceptional immune system and this drug is suppose to take that down a notch. I have only had 1 cold and that was my husband's fault. He was convienced it was just allergies so I didnt avoid kissing him and drinking after him and next thing you know we both have it.
So I dind it humorous and think Im so brilliantly clutsy and just thought I would share that with you all.
We got a gift card from my brother-n-law for this restaurant in town so we decided to go tonight. It's called Big River. Its a chain or branch of Gordon Birch which has several different places around the country with several different names.
We stopped at a used book store before we got there to do some trade ins. I found some great craft books, one in particular which is on my Amazon wish list. It was packed, as it usually is, and I don't know if the heat was on or there was just too many people in there, but it was warm to say the least.
I managed to get out of there without an issue, but I guess I didn't have time to cool off enough before we got to the restaurant. I didnt feel to hot when we got there or when we took a seat in the bar to avoid the line, but then it started coming on strong. I got a little fuzzy in my head and felt a bit sick. I stepped outside to try to get some cool air, but it was raining and all the smokers were huddled under the overhang.
I went back in and told the waitress that I have MS and the heat was making it bad. I felt so bad that I was going to ruin dinner. I almost started crying. We were sitting on bar stool without backs and there was a big light right on the whole table, so I asked her if we could move to one of the other tables as soon as one came available. She said yes and let us sit and wait it out.
She didnt have to do that. I know that time is money for wait staff. I used to be one, and I can totally relate. She was very understanding and didn't act weird or make me feel uncomfortable about the situation.
It didn't take too long for a table to clear out and we moved over to the side where the light was on my husband's side of the table and not mine. He had gotten me a wet papertowel out ot the bathroom to put on my face while we were waiting, went and got a pony tail holder out of the car, and I took my shoes of as soon as we moved table. I love my husband for being so understanding too.
After we moved I started feeling better so we could order. I could actually focus on the menu and concentrate enough to pick out something to eat. I didn't ponder on it too much though.
Im am very thankful for the waitress for being so nice and I left her and extra 5 bucks on top of her 20% tip. So she ended up with an almost 50% tip. She deserved it. She really help make the situation better.
There is some worry and speculation about the drug and its side effects because someone in the trial did die. It is not as worrisome to others as it may sound.
The person in question lived in a foreign country where rules and regulations for drugs may be different.
We are under strict orders to not take any steroids without permission. For those not aware of the treatments for MS, steroids is given to patients at the beginning of a relapse to try to help prevent it from getting worse. It only works in the very early stages if it works at all.
You have to notify the study that you are having symptoms, go into them and be seen, and if they think you are indeed having a relapse then they will administer the steroids to you personally. This is for the sake of the study and to insure your health.
This person in particular got adult chicken pox, which in itself, is a very dangerous thing. Especially to someone who's immune system is already compromised. Thats what the drug does. That is what all MS treatments do. They take your immune system down so it will hopefully quit attacking itself.
This person took drugs at the study and apparently was taking other drugs that she had obtained somewhere else. This I do believe is the true nature of the problem. I do not think it was the drug alone.
I was notified by phone immediately and my trial nurse was very sure I understood what was going on before she got off the phone. Then there was a new line of paper work to include that people who have not had chicken pox will no longer be admitted to the trial. I had it as a child and a good case of it, so Im good either way.
Incidentally there apparently is now a clause in there about herpes because of someone getting treatment that contradicted the study in some way. I really didnt need details on that one.
That is the thing about studies. If something happens to 1 person, then that incident now becomes a potential side effect everyone else has to be checked for. So just cause they list a side effect, doesn't mean it happens a lot. It could have been just 1 person. They can't rule it out cause it happened why they are on the study.
You do have the option to opt out at any time. You are not in it for life. If you get really bad and need serious treatment, they will treat you and take you off the study.
I still like my odds with the pill and it's not a needle.
Every so often I get this crazy heartburn for a few weeks. Then its gone and I'm OK for several months. I don't get this heartburn and neither do the docs.
It starts our on a small level, which at that time I take some antacid and normally it would go away. Then there will be time where it just keeps coming no matter what I take. Even the types of medicine that you take regularly to make it not happen, like Prilosec and the like.
I call it crazy because it feels sorta like heartburn but on the right side of my chest not the left near my heart. There really just isn't anything over there. I think that's the part that makes me sound like a hypochondriac when I talk to the docs. Trust me, I am anything but. I am usually the last to go to the doctor thinking oh, its just nothing.
It doesn't hurt to breath, or move. In fact walking seems to help. Its doing anything remotely comfortable that makes it worse. I will get out and walk around, if its day time, and think oh I'm feeling better and can rest now, then bamm, its right back. It really sucks at night especially the early morning around 2am when its to dark to go walking and the drive to Walmart would just kill me. I live out in the middle of no where so everything is a trek. It gets incredibly boring walking around your house. I am thinking about getting a treadmill so at least I can watch TV and walk and maybe not be so bored with it.
Heat seems to help to. I usually get in the shower until the water runs cold which helps. Its not a cure but is sure feels better. I've tried using a heating pad, but its not very convenient. Its size is awkward and I don't really want the heat other than in one spot. I wish they made small round heating pads for spot treatments. lol.
Rubbing my back in the upper right area around where my scapula is helps too. I don't know why but it really seems to help. Also patting the area both back and front.
I have seen docs about it and most just want to recommend some type of diet suggestions or a Prilosec type drug. Ive tried to relate it to some sort of food, but nothing really seems to stand out. I get it no matter what I had for dinner or desert.
I have had a chest scan and nothing was there so there is no growth or anything like that. I'm not having any kind of breathing problems so its nothing with my lungs. Ive had too many lung tests so I'm sure they would have found something by now if it were related to my lungs.
I'm keeping yet another log to see if there is any correlation between anything. I have heard from some folks of a thing called the MS hug, but my symptoms don't really seem to match up with any of those from people I have talked to. Mine is pretty localized to one specific area..
Im happy that year is behind us. It was so long and too much happened. lol.
I will have an appointment late this month. I hope to get everyone caught up by then. It will be a short appointment which I have come to love despite the long drive. lol.
Hope everyone's year is good and gets better every day!
© Blogger templates The Professional Template by Ourblogtemplates.com 2008
Back to TOP
