My Life With MS

Well here I am again,I was told when I got back to Oregon I would have to have more tests run,they(the VA) did not think I had MS.well after all the tests,they told me I did not have MS,but they found out I was bi-polar,I also had sleep apena,and COPD.Well I got on Medicare and that meant more tests,I got a call from the doctor Thursday,and he told me that I did have MS.Well I have been of the shots for 2 years,and  now I have to start again,but with different shots.These I will only have to take one shot a week.The name of the shots are Avonex.

Now I am waiting for medicare to ok them,so that I can start the shots,there are side effects,which are flu like symptoms,sounds like lots of fun.LOL

Well I am glad I still have my sense of humor.

I will keep all of you updated as I get information.

Peggy

Well the doctors say now that I do not have MS.and that puts me right back where I was 5 years ago.I know it is hard for the doctors to find out what is wrong medically,and when that happens it take more tests, and time.Well I can not stop my life while they try and find what is wrong with me.
So I have started to live my life again,I get online 4 times a day,I make friends,and I have many social sites where I make these friends.I have several blog going also.I have a new one coming soon.I hope you will check it out.

It will be called Funny Duck Animal Blog:It will start with dogs, and then we will see how it goes from there,I really hope it is enjoyed.

Well I thought it was time to do some up dates.

I still do not know what is going on with my health.

I am still catching spammers on yahoo messenger,I have about 6 that I am talking to.

I sure would like to know who to talk to about these people to see if they can be stopped.

I go to Portland to see my neuor on the 16th of Nov.I sure hope they have found out what is wrong with me.

I am going to be posting some things I have found online,and I sure hope you will enjoy them.

I like investigating things on line,and some times I find good things,and would like sharing them with everyone.

I have been to the MS clinic and they seem to think I do not have MS.They really do not know what is wrong with me.I guess it wait and see again.
I have been helping scammers get caught.
I had been talking to one and he said he was sending me a check so that I could pay my rent and bills so I do not get Evicted. the check was in the amount of $3,200.00
Well I got the check and took it to my bank,and they told me to get online and find the bank,and the company that the check was drawn on.
Well I did just that and the check was wrote on an account that had been closed since 2007.
I sure hope people will watch what they receive when someone they do not really know sends to they.

I went in to the doctors a week and a half ago,I had to have another lumbar puncher,I am still waiting for the results.They are checking how the MS is progressing.
There have been so much going on in my life in the last 9 months,I got my divorce,then my ex shot himself in the head,boy did that make me feel so bad.I am still learning how to deal with that,it is hard,but I am trying.

I first want to say I am so sorry for not keeping up with this blog.I am going to do better,I am trying to put together some storys from some other people that Have MS,and some of the things they go through.

I have had a very bad time,First my husband divorced me in Dec.2008,Then on the 16th of June of 2009 he shot himself in the head and killed himself,I am now having a hard time dealing with what he did,at first I thought maybe I might be to blame,but I really do not feel it was my fault,I think the reason that he brought me home to Oregon was so that he could carry out his plan to kill himself.

I have been going through being scammed by men in Africa for 4 months now,I will be trying to put the ones that I catch,who are schemers on my space page,I want to keep other ladies from being hurt by them.I hope you will comment on this blog ,and maybe on my space page also.

Keep checking back I will be updating every week now.

Thank you so very much for reading my blog and please check out my blog on my space.

Peggy

Well now I am not sure what is going on with this MS,the doctor has taken me off my shots,I was getting sick,and having some bad side effects.
The doctor said they want another Lumbar puncture,and they are going to get me into MS clinic at OHSU,which is the college hospital.
I am worried,and will have to wait until they find out how this MS has progressed.I am still doing good,except for the side effects I was having with the shots,I still am having one,I break out in sweats a lot and mostly at night.I have been so very busy trying to plan a concert for my 65th birthday,I think it is going to be so much fun.It will be on the 27th of June,where I live.
I will have a country singer to preform for me,His name is Phil Bradley,and he lives in Gresham,OR.
If you would like to hear him sing you could go to myspace.com/oregonpeggysmith Please go and hear him sing,he is on my friends list,and go to his profile and listen he is so very good.
I will keep you updated as soon as I find out anything about my MS.

A friend of mine posted this and I read it and I thought this sure sounds like me.
So I made a copy and thought I would like to repost this so that people will know
just how I feel.

Understanding What Having MS Means by Unknown Author

I got this from a friend, I do not know who wrote this but it is wonderful and so right on with how I feel.  I think people need to take time to read this and pass it on to others.

Having MS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about MS and it’s effects on us; and many of those who think they do know are actually misinformed. In the spirit of informing those who wish to understand…

These are the things that I would like you to understand about me before you judge me:

Please understand that being sick does not mean I’m no longer a human being. I have to spend most of my day in considerable pain and exhaustion and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school, and work, and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it for a week or two, but I’ve been sick for years. I can’t be miserable all the time, in fact, I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy, that’s all. It doesn’t mean that I’m still not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say “Oh, you are sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you are welcome to.

Please understand that being able to stand for 10 minutes doesn’t necessarily mean that I can stand for 20 minutes or an hour. Just because I was able to stand up for 30 minutes yesterday doesn’t mean I can do the same today. With a lot of diseases and disorders one is either paralyzed, or they can move. With MS it’s far more confusing: one hour or day or week or year we may have normal – or almost normal – mobility; the next hour or day or week or year we may be unable to sit, stand, walk, think, remember, or even get out of bed, we may be unsociable or depressed, and almost assuredly we are in pain. We have good days and bad, and during our good days we may truly not “look sick”, but we are.

Please understand that making plans other than immediate ones is a crap shoot at best, because we can’t know how we will feel or what our physical, mental or emotional condition will be. If we seem to hedge about making plans with you, please understand it’s because we truly don’t know if we will be able to honor them. The same applies if we have to cancel plans previously made or invitations, even at the last minute – it is not personal, and it makes us as frustrated and sad as it does you! That is what MS does to us, and it’s how we must live our lives. It is not just a matter of sucking it in, or bucking up, or psyching ourselves up; believe me if we could, we would!

Please understand that MS is variable – with each person and from person to person. It is quite possible and often all too common, that one day I can walk to the park and back, or bicycle 2-4 miles, or swim 12 laps, or even run with my dog; while the next day I may have great difficulty getting out of bed, walking to the kitchen, or be unable to walk at all without a cane, walker or other mobility aid. Please don’t attack me when I can’t do today what I did before by saying “but you did it yesterday!” or “you did it before!” Your frustration can not begin to compare to our own frustration. The very act of planning while not knowing what condition we will be in is stressful and tiring in itself. If you want me to do something with you, or go someplace with you… ASK if I can. I may well dearly want to go, but simply be physically unable to do so. Understand if I have to say no today, but please ask me again soon.

Please understand that “getting out and doing things” does not make me feel better and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes, take these vitamins, herbs, tonics and snake-oil cures will frustrate me to tears and is totally incorrect. If I was capable of doing things, don’t you think I would? And when I am capable, I DO! I work with my doctors and physical therapists and follow the exercise and diet plans they prescribe.

Another statement that hurts: “You just need to push yourself more…” Obviously, MS directly impacts muscles and ours do not regenerate as quickly as yours do. Pushing ourselves beyond comfortable physical limits can be dangerous and cause a severe relapse. On the other hand, doing what we can when we can is excellent therapy both physically and mentally… and we do! If I work at a part-time job for 4 hours one day, my fatigue level is greater than yours if you worked a 12 hour day. Many days I can still do anything I ever did as well as I ever did … but only one thing per day or week or month. Everything drains us and exhausts us exponentially more than a normal, healthy person our age (whatever age that is); our recovery time is also exponentially greater. If I go to a party or dinner and show tonight for several hours and have a wonderful time, I do so knowing with 99% certainty that tomorrow I will need all day to rest and recover, much of it spent lying down. MS causes secondary depression in and of itself; our depression may escalate when dealing with days on end of constant pain and limited mobility or cognitive function. We are NOT tired because we are depressed! We are depressed because we are so tired.

When I say I can’t do something because I am so fatigued, please don’t say “Oh I know what you mean! I am worn out too, but…” because you don’t. MS fatigue is not like any tiredness you have ever experienced, nor has anyone who does not have MS or other fatigue-producing disorder. I know you mean well, but it’s irritating to hear because it tells me you don’t understand me or my MS at all. I may well be just plain tired – we get normally tired during remission phases just as any normal person does – but trust me: we know the difference, and it’s huge.

When we are together, please understand when I say I have to sit down, lie down, get a drink, take these pills, or get into a cool place that I have to do it and do it now! No, I can’t walk another 5 blocks to the car, or walk back down the hill I just climbed up. Don’t baby me, don’t hover over me, don’t do things for me unless I ask – we are very proud and never want to be a burden. Our independence, or what we can retain of it, is of paramount importance to us! Please help by listening to and believing what we say we need and act upon it accordingly and as quickly as possible. You wouldn’t question a known diabetics request for orange juice or insulin, so please don’t question us or urge us to ‘keep on… we are almost there!’ Not unless you are prepared to a) carry us the rest of the way or b) call 911. MS does not wait, nor does it forgive… when we say “please … now!” it means now.

If you want to suggest a cure to me, don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my family and friends suggest something at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even markedly helped, all forms of MS the world would know about it. If you still insist on promoting ‘cures’ to me or giving me ‘this will make you better’ advice, do so; but understand I won’t rush out and try it though I may well continue to research it on my own and discuss those findings with my doctors.

In many ways I depend on you… people who are not sick… I need you to visit with me when I am unable to go out; sometimes I may need you to help me with shopping, cooking or cleaning; sometimes I may even need you to do those things for me. I may need you to go with me to my doctor appointments to help me remember and understand their direction, or I may just need a ride. I need you on so many different levels… as much as possible, treat me as normally as possible, enjoy me and allow me to enjoy you as much as possible, and…. as much as it’s possible…

I need you to understand me.

I was living in Bozeman,Montana I moved there in 2001,and during my time there I noticed something was not right with me medically.I had become very off balance and started to fall and get hurt, and when I would be walking in my house I also noticed that I was walking like I had been drinking,and I had not drank in years.Well that started my trips to the Veterans Hospital to see if the doctors could find out what was going on with me medically.
The test went on for over 2 years,the first test was for my eyes,and the doctor said there was a problem,and also said that I need to have a MRI.I did not know just what that was,and I found out 2 weeks later.I also found out that I was very claustrophobic,and went into a panic attack,and could not have the MRI taken that day,and had to reschedule the appointment for the next week.
I had to go to my primary doctor and told him what happened and he gave me some medicines to take so that I could get the test done.
Well after about 2 months I got a letter stating to be at the hospital in 2 weeks for more test.At that time the run a CT scan and of course blood tests.After a month they called me and set up an appointment with my doctor.When I went to see her she told me that I had to go back to the hospital and have more test.She said she would make the appointments and the hospital would send them to me.
It took 2 month and I got the letter it said I had to have a lumbar puncture.I did not know what that was,but I sure learned real quick that I did not like the test.While there they said they could not get very much fluid,so they called the doctor and he told them he need 10 cc Well after one and a half hours later all the got was 2cc.They did 7 lumbar punctures.They then wheeled me to the day stay center,and I had to stay there for 7 hours.I was so very tired,and when I started to doze off they would tell me to breathe.I was so glad to leave there that day,I sleep all the way home to Bozeman,which was about 92 miles.When I got home my husband had to help me into the house,and he put me on the couch and I stayed there for 3 days.
2 weeks later I had to go back and see the Neurology doctor,we talked and he told me there were 3 things that found it could be.He said when he got the results of the test he would call me and have me come back and we would talk about the test.I felt it was taking forever but it was only a week,the doctor called and said to come back in the next week.

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