I want my mommy

OK, so just because I'm 50, I still want my mom.  I want to go back to when i was a little girl and feeling down, mom was always there with your favorite foods or just a hug... today is one of those days.  22 years ago today my daughter was born, maybe that's why i'm feeling a little low today.  She has her own life, she lives about 2 hours away, is working full time and going to school... (those were the days)  I'm craving my old favorite, fish and chips wrapped in newspaper with vinegar which I would gladly go get it, except England is quite a long long way from Florida.  Mom is about 2 hours away and too far for me to drive plus she's at the doctor's office every day with my dad.  So here I sit with the three dogs, my sewing and my computer and waiting for the rain.  Ok, i've vented, got it off my chest, and now going back to my cross stitch.... Hope everyone is feeling well today.

Sciatica - - - - ouch

I thought I'd just pulled something in my back when I lifted up a bag (40lb) of soil.  The first three days were excruciating (or so I thought) but now it's 10 times worse and going down my leg, but not the normal sciatic pain where it goes down the back of the leg, this is the front of the leg.  None of the over the counter medications are working and am currently sitting here sitting on a heating pad.   Sometimes I think, "what's the point."  I can't work, I'm doing nothing all day (except my cross stitch), money is getting tighter and tighter, the heat of summer is coming... I have a lot to look forward to.  Sorry guys, pity party for one today.

This should make you smile....

I've had a lousy couple of days and am in an even worse mood today, until I received this joke.... enjoy

White House Bathroom

Before the 2001 inauguration of George Bush, he was invited to a get acquainted tour of the White House. After drinking several glasses of iced tea, he asked outgoing President Bill Clinton if he could use his personal bathroom. When he entered Clinton's private toilet, he was astonished to see that President Clinton had a solid gold urinal. 

That afternoon, George told his wife, Laura, about the urinal. 'Just think,' he  said, 'when I am President, I too could have a gold urinal.  But I wouldn't do something so self-indulgent!' 

Later, when Laura had lunch with Hillary at her tour of the White House, she told Hillary how impressed George had been at his discovery of the fact that, in his private bathroom, the President had a gold urinal.

That evening, when Bill and Hillary were getting ready for bed, Hillary smiled, and said to Bill, 'I found out who pissed in your saxophone.'

MS Bracelet

I received my MS bracelet and love it.  I will be getting more in and if you are interested in one (or more), let me know (leave a comment or send me an email).  They will be $7.00 each. 

Had to go out food shopping today and boy the heat here in Florida is a killer.... again as soon as I stepped out the door my arms and legs started tingling.  Not the tingling like pins and needles, this was quick short pinpricks, like ants crawling and biting over the body... I have to remind myself to ask the neurologist is a part of MS as I've not noticed it before, but then again, it's almost 90 degrees here today.

Medicare

I finally got my Medicare card today.... not effective until July 1, but it's getting closer.  I have no idea if the doctor's will still charge me - I know when I was working and had insurance, all I had to pay was $20.00.  The only time I have been to the doctor since not having any insurance and just to get blood work cost me over $200.00.  I will have to go back to the neurologist but not looking forward to it as they just want to prescribe the shots, which I won't do anymore and the new oral medicine makes me a little scared (anyone on the new oral medication, please let me know how you are doing on it, the name of it, and how you feel in general).  Not working has decreased my exacerbations but the tiredness is always there although I don't worry anymore because I can sleep whenever I get tired.  Would sure love some energy though... haven't done laundry in quite some time it's just so tiring and the floor really needs washing, and before you ask, NO my husband is not capable of washing the floor LOL... he does a pretty good job on the laundry though.  I used to have a cleaner come in once a week, but I found myself cleaning before she got here, so that was redundant, and then of course, the money became tighter and tighter... so no more cleaner. 

My thoughts and prayers go out to all friends and family in Japan.. my disability seems like a non-issue compared to what they have to go through.  I don't know how I would handle this type of disaster(s) that they have had.  I can only imagine if you have no energy, or have walking issues due to MS (or any other similar disease) or even vertigo, how on earth would you be able to get up and RUN... 

Please keep them in your thoughts and hearts.

IF MY BODY WERE A CAR...

If my body were a car, this is the time I would be thinking about trading it in for a newer model.  I've got bumps and dents and scratches in my finish and my paint job is getting a little dull ... But that's not the worst of it.

My headlights are out of focus and it's especially hard to see things up close.

My traction is not as graceful as it once was. I slip and slide and skid and bump into things even in the best of weather.

My whitewalls are stained with varicose veins.

It takes me hours to reach my maximum speed. My fuel rate burns inefficiently.

But here's the worst of it --

 

Almost every time I sneeze, cough or sputter - either my radiator leaks or my exhaust backfires!

Patients like me website

Join Me on PatientsLikeMe!

Come join me on PatientsLikeMe, a community of patients, caregivers, doctors, and other friends all sharing information to help make a difference in the lives of people with MS.
Want to see your treatments, symptoms, and quality of life over time instantly translated into helpful charts and timelines? Want to see what medications are being prescribed for other patients like you? Want to connect with other patients experiencing similar symptoms?
By joining me, you can do all of this. Share your experiences, find patients just like you, and learn from others.


Join me at PatientsLikeMe:
http://www.patientslikeme.com


You can view my profile at:
http://www.patientslikeme.com/members/view/luvbug622

MRI done right, read wrong

I saw a post on a site today regarding someone's MRI not showing the normal spots of MS.  I wanted to reply to the question but was unable to, so I decided to write about it here for anyone that is interested.  When I had my first MRI, it was read as normal, no abnormalities.  One week later another MRI was done and three spots were found.  I had it done at the same location so I asked "how can that be, in one week I have three spots."  I demanded an explanation and sat with the radiologist who compared both MRI's with me.  I even saw for myself, they weren't on the first one but they were there a week later.  He fiddled with some buttons to darken the picture of the first MRI and OOPS..... there were the spots.  I obviously advised that I was not paying for a 2nd MRI when the 1st was their fault.  Anyway, the radiologist and the doctor that ordered the 2nd MRI did tell me that it was possibly MS.  I had no idea what MS was at that point and luckily managed to get an appointment with the MAYO CLINIC within the first month of being told that it could be MS.  Obviously, as soon as I found out (and before my MAYO CLINIC visit) I went right to the internet and did my research as to what MS was.  I find a very helpful site that had a chart listing all the symptoms which I printed off and went through line by line.  Out of the 10 most popular symptoms, I had 9 of them.  So I was all prepared for my trip to Mayo.  I had both sets of MRI's, all my medical records from the past 20 years (long story as to why I had them, but I did) and my chart showing that I had 9/10 symptoms.  The doctor met with my husband and I for a long time and seemed very nice.  He did the tests that I've found all neurologists do when testing for MS, reviewed my chart showing which symptoms I knew of and then he looked at the MRIs.  After looking at them he opined that it was not MS.  The lesions on my brain were not consistent with MS.  He did admit that I had a lot of the symptoms (deafness, vertigo, memory loss, balance issues, forgetfulness etc..) but told me again it was not MS but would send the MRI's to the radiologist on staff to review.  When I got the report from them a couple of weeks later, he again opined that it was not MS.  OK so if it wasn't MS what the hell was it.  Now I find a local neurologist who I disliked from the first time I met him.  His only concern was who was paying for the two sets of MRI's.  He couldn't understand any insurance company paying for them.  I told him that was not my concern and I wanted to know what I did have.  He said it would take a few months to find out what I had because he would need to do a lot of tests.  Needless to say, I left his office knowing I was not going back.  I went back to my regular GP who provided me another name of a neurologist (the biggest in the area) and I made an appointment to see him.  Of course at the first appointment, he was very kind and friendly, doing all the same physical exams I'd had at MAYO, reviewed the MRIs and he also said, you don't have MS.  Even though you have many of the symptoms of MS, this MRI is not in line with other MRI's.  After I saw him a few times he told me there was nothing he could do for me (he would not order a lumbar puncture even though I asked).  He referred me to an infectious disease doctor to try to find out what was wrong with me.  Long story short, the infectious disease doctor did his usual tests and DID order a lumbar puncture.  After the results came back, he told me I was all clear as far as any infectious diseases and really need to go back to the neurologist but wouldn't tell me why.  So, again I made an appointment for the neurologist, taking my blood work with me and he reviewed the part about the ocinological bands (there were 10 or 12) and he said, oh, you have MS.  Just like that.  I got pretty angry at that point and I'd had it with this doctor, no apology, nothing.  I said, so what does that mean and his reply was in doctor language.  Due to me being angry I asked him to tell me in plain English what could happen to me... his comment:  You may never walk again.  I burst into tears (I was in his office by myself, no family member with me).  He went right on to start talking about treatment plans but my mind was not there, I just wanted to get out of his office.  So from the first diagnosis from the radiologist to the neurologist's diagnosis after a lumbar puncture, was four months.  I guess MRI's don't lie, it's just the person reading it.  So, if the person that asked the original question about her doctor saying her MRI does not look like MS, keep going.... you know the answers.

Airport Security Solution

Not feeling that great today.  Don't know what I've got or what I'm getting, but everything aches.  It's been a blah day here in Florida today, it doesn't know whether to rain or not.  At least the rain will make the grass grow again and am kind of wishing for a ton of rain to fill up the lake.  I live on a lake that is now empty.  This is the second time it's happened in the five years I have lived here.  It's not really a "lake", it's more of a huge hole in the ground but there are about 15 homes around the lake.  I love sitting out there watching the squirrels and the birds.  We also get sandhill cranes and ducks and my husband always has food for all of them.  There can be a new loaf of bread in the kitchen and he asks me if it is stale....he always throws out our leftovers for whoever wants it.  I must tell you though, our dogs are the best fed dogs you will find.  They are better fed than my children ever were LOL.  I cook chicken for them three times a week and it is so cute to watch them wake up when they "smell what's cooking."  Dogs are truly man/woman's best friend.  Well I hope whoever is reading this has a great rest of the weekend and will write again next week. 

Hair Loss and MS

I'm still not sure if my hair loss is due to MS or is my thyroid medicine still screwed up.  I have read on some sites that the hair loss is to do with MS and others adamantly say no. Well, for right now, I will have to wait and see because it is too expensive to go to the doctor's for more blood work.  Counting the days till July 1, 2011 for Medicare to kick in, as long as the government doesn't go broke in the meantime.  If you have the same problem with hair loss, please leave me a comment as I'm really frustrated.

Kindness

Maybe it's just me, but it is very hard to find "kindness" in this day and age.  I cannot comprehend what we did before the internet came along, but thanks to the internet I have found lost friends, found new ones and have even found strangers that are willing to help.  FIRST, thanks go to Steven who I found on a Photoshop forum.  He perfected the picture you see at the top of this screen.  I had it where it didn't really line up and being the perfectionist that I am, I wanted it to look perfect.  He went above and beyond to help this stranger.  SECOND, to my "followers."  It feels great to have people following me on my blog, whether I make sense or not, I know that somebody, somewhere is reading me (LOL).  Last night I got a tweet about a car chase on USTREAM and spent three hours watching the stupid thing, but  I 'met' two very nice people (Donut and TyJuanOn).  Whether it was their names, or just our conversations, we seemed to hit it off.  I, for one, am very thankful for the internet. Finally, I want to thank my husband... I have always been independent, never let anyone do anything for me, but because of this disease, he is there for me always.  To all the people I know, and those I am about to know, thank you.  There are KIND people out there.