MRI results were good! No real progression, at least on the spine. Not sure yet if she will order a new one for the brain.

I go back on April 6th for the second sleep study where I wear the mask. Fun.

Just sitting here in silence on a Saturday night.

I had an MRI yesterday morning to check for new lesions on my spine. Won't have the results for a week or so. Hmmm.....

Also went to a sleep study last night because I just don't sleep. Turns out I have sleep apnea. WTF? Sigh.....

I am frustrated. Feeling creative. I AM going to start working on my website and FIX what I didn't like.

I AM going to start working in my journal more. I look at it laying here next to me every day and I have been neglecting it terribly.

I FINALLY have an appointment with the 'pot' doctor on the 30th. I don't know how long it takes after the visit to get my license but at least the ball is rolling. And, before you judge.....show me something else that can help my pain the way that pot does and we will talk.

PAIN is constant of late and just almost unbearable. I see the neurologist on the 27th and I have to get copies of my records for the 'other' doctor. I will be starting physical therapy soon as well. Hopefully that will help with the stiffness. This disease sucks.

We spent the night in Ann Arbor after a day on trails and walking thru downtown. We had a GREAT time. Pictures to follow as soon as I upload them to the computer.

My hips are KILLING me right now. Everything hurts but the hips are the worst. Sigh.

Rhiannon, Hunter and Joe came to dinner last night. I LOVE my kids so much and miss them. Bubba is such a ham. He is just the cutest thing ever!

I spent the morning watching Suzi Blu videos. I just love this woman and her talent AMAZES me. She is just so damn talented. I'd LOVE to do art with her.

Carry on.

Sick and throwing up for the second time in less than 2 weeks....something isn't right. Apparently it may be the MS so I'm waiting on a call back from the neurologist.

Sorry about not posting....I'll be back asap.

Toodles.

Montel Williams was on Oprah yesterday talking about his MS and I missed it. I am so bummed. Montel is very open with the fact that he uses pot for the pain. He has a new book out that I'll have to pick up this weekend. I read the first one shortly after being diagnosed.

The day has not gotten any better. I am still in so much pain that I can't sit still. I want to not think about it for a few minutes but it won't let me.

It's 3:30 AM and here I sit, unable to sleep because of the pain in my legs & hips. I can't lay still, can't get comfortable. I have been awake for most of the night, tossing and turning, moving around in the bed, playing with pillows between my knees in a desperate attempt to get some sleep. I am exhausted. I just want to curl up and cry.

Is this what I have to look forward to?

Well, I saw the new MS doctor yesterday. The good news is that I have not progressed beyond relapse/remitted MS. The bad news, as there is a lot of it, is that they really can't do much for me. Basically, you have MS, deal with it.

She increased my Lyrica and I go back in 6 weeks to see if that is helping. I am to slowly, over the course of 4 weeks increase it. If it isn't helping then we play with different drugs, one at a time, until we find something that 'helps'. And I quote, 'The pain isn't going away. Once it starts you will have it the rest of your life and all that we can do is try to make you more comfortable. We can't take it away completely'.

That was a kick in the stomach.

As far as the neuropathic itch, again...deal with it. There simply isn't a drug to treat it yet. I have tried Benadryl, creams, everything I can think of. Nothing helps. It itches so bad. It's caused by damage to the nerves. Same reason for the pain. It's only in certain areas...my forearms, legs from the knee down and a band around my waist. I have calluses coming on my arms from scratching so much. I scratch until I bleed. Todd is constantly telling me to stop because I don't even realize that I am doing it.

Sigh.

Todd says that this is the hand that I was dealt and I could be much worse off than I am so take it and live each day and make the best of it.

I have to try and follow that and live by it. I can't let this thing win. I can't let it break me.

Oh...I also have a thing called spasticity. It's from the MS and makes me feel stiff all the time. There IS a drug for that and they are going to start me on that when I go back. She didn't want to start me on too much new stuff all at once.

So, that was my visit.

I didn't post anything for a couple of days because I was in the bed, depressed. I have pulled myself out of there and am fighting that demon now instead of letting it win.

I feel like I have so much on my shoulders.

I remember when I was diagnosed I didn't have any of these symptoms so I thought, ok, I can do this. Now, I feel overwhelmed because all of this shit has developed over the last 6 months and it's just all scaring me.

Make the best of it.

Ok, I'm off to clean the kitchen. Toodles.

This is my 100th post!!! Go me! That means one of two things...I 'talk' a lot or well, there isn't an 'or', I just 'talk' a lot. Deal with it.

This is my brain. I guess all those little white spots shouldn't be there. What-Ever!

In pain tonight. I feel like a broken record but there is a lot of pain in my life right now. Hopefully the new doctor will have some ideas on how to best address this pain.

I had a very nice evening...Thank You Todd!

Troubled by something that I will keep to myself. I guess life can't all be fun and games. You gotta deal with the crap too.

It's early. Have to drive down to the hospital today and wait around for copies of my records from the MS doctor. I say 'down' because I have to drive into the heart of downtown Detroit. Oh Joy. Doesn't scare me, that's where I grew up but it's a pain in the ass because it's like a half hour drive, one way. Oh well, at least I will be done with it after this. I see the new doctor on Thursday.

I've noticed that I sometimes forget for about 10 minutes each morning that I have MS until I'm really awake and the pain starts. It's a glorious 10 minutes.

Irritated about something but I'll get over it.

Feeling very fatigued and achy today. Tired as Hell. MS rocks!

Sarcasm.

Had a great time with the kids last night. Drama with Catherine and her boyfriend that I am pretty upset about but out of respect for her I won't go into detail. But, rest assured that my ass is ON this shit.

We had stuffed cabbage. Bubba hadn't napped so he was quite cranky.

Ok, shower for me....more later.

Ok, remember me saying that my neurologist was moving to Virginia in April and I was gonna have to find a new one? Well, I decided that now, with all of this pain I am in is as good of a time as any to go. I found one and made an appointment this morning for a week from today. Maybe a new combination of pain meds is in order?

I hurt so much. It's hard to describe. It feels like it is real deep in the legs and hips and it's a burning sensation. I don't know how else to describe it. But, I am miserable.

My legs hurt so bad right now that I can't sit still. Seriously, it is bad. What happens if it keeps getting worse and worse? I am on 2 different pain killers that I take twice daily each and it still only HELPS with the pain. I swear, I'll deck the person that turns their nose up at me for smoking pot. It is the ONLY thing that makes it stop. I can't just be high all of the time though and it's a hard balance. I'm scared though for the future. Will the pain just get worse and worse or is this as bad as it's gonna get? No one seems to be able to tell me that. That's all fine but, pass the bong.

In April they start accepting applications for permits to have medicinal marijuana here in Michigan. If you get approved you then go to a clinic in Southfield to get your prescription. It is unclear at this point if insurance will pay for it. In all likelihood I will still have to pay for it but not be breaking the law anymore to do it. You can also have up to 12 plants in your home. IF you can successfully grow it you will certainly save money.

For the most part (other than the pain) you wouldn't know I have MS. I am lucky enough that it hasn't affected my walking. I can see subtle changes but I don't think others can....I don't know. I have days where I walk slower and the basement stairs are getting harder and harder to go up and down. There is the occasional bought with numbness in my hands and/or legs. I got my handicap sticker for the car a little over a year ago and walked out of Secretary of State crying.

Hello. My name is Vickie and I have Multiple Sclerosis.

Can you tell I'm bored? This is what I opened the fridge to this morning. I do not use the vanilla creamer...I hate vanilla anything. I use Italian Sweet Cream. See the blue box? $3,500!!! That's my shots.

Ok, I'll be back...

Update on scraps journal:

Made this page early this morning but I can't take full credit for it as I kinda stole the basic idea of the green and vines from another blog only, now I can't remember which one!!! I feel so bad that I can't link to it here so my apologies to that person, whoever you are.

Hips are really hurting today. It's raining outside...all of our snow has melted. Bummer. I'm sure there will be more.

4:20 AM....have I mentioned how much I hate MS lately? I am awake, made lunches and my hips are KILLING ME. I hate this. You know...even when I was diagnosed I never really got mad. I cried for about a half an hour and cried again when I told Mark, Todd & my Mother and from that moment I just accepted it as the hand that I was dealt but as time goes by and new symptoms pop up I am losing my positive attitude about it. The weakness in my hands and legs, constant bladder infections, changes in the way that I walk, numbness, itching and my favorite of all....nerve pain. The pain gets so bad. It is worse in my hips than in my legs but they get bad too. It's kinda like that menstrual pain that you get in your hips with cramps only worse and add a burning feeling to that. Sounds like fun, huh? I know, I know....nobody likes a whiner but I figure I have a right to the occasional pity party....it's the least that life could do.

I.
Am.
In.
So.
Much.
Pain.

The pain in my legs and hips can stop anytime now. It was so bad last night at the grocery store that I almost had to stop and leave. See people, THIS is why I smoke pot. It it the ONLY thing that takes my pain away completely.

Back to painting.....

I picked up my Copaxone today at Walgreen's and last month it was $2,900 and change. Today it was $3,400.29. Un-frickin'-believable. If I didn't have health insurance I'd be screwed. Period.

Went to the doctor yesterday. I'm disappointed that they didn't seem as concerned about the itching as I am. They decided that it IS Neuropathic Itch and doubled my daily dose of Tegretal. If that doesn't work I have to go see a dermatologist. There is no clear 'cure' for the itching....just basically try to control it. I asked her point blank if the MS is progressing and she said 'Yes and No'. She said that I haven't moved to the next level but I have gotten worse. I don't even know what to say about this so I will just move on.

OH....she also let me know that in June she is moving to Virginia! Now I have to find a new Neurologist. Sigh. She is the one who gave me the diagnosis in the hospital. I love her.

As you can see I have a lot to do today. 'Cinderella, Cinderella.....'

I want to touch on something here because I don't think I've made it clear....we (Mark & I) live with our best friends (Todd & Chris) and their daughter (Jessica) in a beautiful, loving home. We ALL made this decision after much consideration. It works for everyone. Mark, Todd & Chris all work full time so I take care of the house stuff (cleaning, shopping, cooking) during the day. In opening up their home to us they got us out of a lease we didn't want to sign, a house we hated, out from under grown kids who needed to be on their own and put us ALL in a situation where we are all able to save money for a change since we split costs here. This works for us. We are ALL very happy. Someone left a nasty, anonymous comment here yesterday about our living situation and I think she hoped it would upset me (I know who it was) but it just made me laugh at her and realize just how miserable her life must be that this was how she felt her time was best spent. I am a very straight-forward person and if I have something to say I don't hide behind anonymous comments. Enough said. I've spent as much of my precious time on this as I intend to.

Moving on....I'm off to wash dishes. YAY!

This is pathetic and doesn't include my shots that have to remain refrigerated.

Sigh.