My cousin just died. He was a quadriplegic (broke his neck jumping into a lake without looking when he was a teenager). His sister is the only other person in the family that I know of that has MS. She was in the hospital having her first MS flare when her brother broke his neck. So, they were both in the hospital at the same time, paralyzed.

It's weird. I was just thinking about him and his sister this afternoon. Not sure why I was thinking about them. He'd been on a ventilator for the past couple of months. Not sure what happened. The family member that called us didn't know everything that happened. I'm guessing that he got pneumonia or something like that during the winter, and because of his condition, he just didn't get better from it.

I hope his sister is ok, and doesn't get an MS flare from this. I hadn't talked to him for at least 8 to 10yrs, and it was before I knew about my MS. I hope his sister is doing ok. (I don't think I've ever talked to her)

I'm sorry Erin :hug:.
How sad for everyone...especially so, to have it happen at Easter time.

With love, Erika

Erin, all the hospitals in my city will let you pick what payment you can make. My Mom was able to pay $25/month and they accepted that, no interest. also we have a med school here for PT and doctors and it is amazing how cheap you can get in to them. And they are overseen by a regular doctor or PT. But that is the only way some people can get medical care. I'm sure your whole experience would be wonderful for a medical student and a resident to take on.

This has nothing to do with MS, but I just needed to vent about this.

I'm on another group of forums, on a non-health related website.

Today, my boyfriend called me, and said that he'd just ridden his motorcycle to Omaha, and wanted to know if I wanted to hang out a bit. (of course)

So, I was all excited about him coming to see me, and I was on that other forum, and posted about him, and that I was all excited that he was coming to see me.

On that other forum, people can click buttons on the bottom of the posts to either agree, disagree, show some love, or say something is funny or interesting.

My boyfriend just left, and I went to that forum to answer some messages I got. I went into the thread that I left the message about being excited about seeing my boyfriend, and three people had clicked the Disagree button on the post. I don't understand that. Why would anyone disagree with my boyfriend coming to see me?

I have been unhappy the past month, and stressed out. I hadn't really talked to the boyfriend for the last month because his job was really busy and stressful. (he quit, he got a new, much better paying job that starts monday) My life has been really stressful lately, and I haven't had the energy to do much. When I found out he was coming to go out to lunch with me, I was excited.

I just don't understand why people on that forum, who I thought were friends, would click the disagree button to apparently say something negative and passive aggressive that way, and anonymously.

I'm really tired. I fell asleep on my boyfriend while we were watching tv in my new bedroom. I was really happy to go out with him for a bit today, even if it was just to go get lunch, with my parents. It tired me out. Think I'm going to bed early tonight.

It's *just one step*.
 

Trying to get into my house today, had to actually go up two steps. I was telling my aunt that we need a ramp. She could see me struggling, and had to actually help me with the door so I could get into the house without falling.

She said, "why do you need a ramp? It's *only one step* .".


She's the same one who mocked me last summer when I was asking my dad if we could build a ramp, because I *knew* that we'd be needing one. (we didn't build it, because she and my sister convinced my dad that we didn't need it. No one listens to me).


I want a bleeping ramp. Why is it so hard to get them to believe me that I need a <very bad swear word> ramp?

Could your local MS society help facilitate one. Or your local council on aging help with your parents getting one? Get a doctor's order and your 'nice' Aunt can't complain

I'm going to see if our contractor can build us one. I want it to look nice, and look like something that would fit in with our neighborhood that has a homeowner's association. It's a good thing my aunt is the association president. I have to ask permission for it, but she's already told me to build it. I'd just give her a letter whenever she needs one to prove it to the rest of the association board that we asked permission if someone kvetches (complains) about it.

When I broke my kneecap, Erin, three years ago in Seattle, I found Medicare would not pay for even a night in the hospital. I had to go to assisted living, where the PT was not adequate. A real loser made visits, but she didn't even pay attention to the fact that I couldn't get on the toilet with my leg held in a hip to foot cast. Then I had a TIA and ended up back in the hospital. Because of the TIA I ended up in a good nursing home with excellent PT. Someway there must be a way to get you into a facility for good PT. Even if it's a roundabout way. I don't recommend having a TIA to do it. Some other way.
The only way I could get proper care was the pay for it all myself ($8000 to 11000 a month in Seattle) or have stress bad enough to have a TIA, with everyone shouting at me to go to the hospital. We have feeble medical care when it comes to some problems, good with other problems. You have to find the way to go for the PT.

I am sorry you lost your better medical care. I was on Medicare and Aetna when this problem occurred, but Medicare wouldn't cover what I obviously really needed, as I was far from home and had no place to go to heal the knee and start walking again. A series of things has made me understand what it's like not to have enough money for care when one is disabled or old. I thought I was covered, not lavishly, but enough. Now I know it is not true and God is my only helper. But in the meanwhile, until God arrives, PT has kept me walking. And my knee healed perfectly, as if nothing ever happened. Just this: my psyche never will trust again...and I never should have trusted. Millions of people have no one to trust. It is horrifying. Praying the doctor finds a way for you to get inhouse PT.

I've got an idea for your healthcare problem Erin. Send the bill tot he White House!!!

That thought has crossed my mind. (I could send half to the WH, and the other half to Congress) But, the government has been screwing up everything they touch for the past hundred years or so. They'd just screw up paying the bill, and it would get sent to collections.

as if I don't need another problem...remember that frozen shoulder I had? It's coming back. I have to go back to the shoulder doctor (who, inconveniently, is now out-of-network) and probably get another shot in the shoulder joint.

And I'm not sure I can do the cortisone shots in the shoulder for the frozen shoulder. My neuro told me that steroids will just make my MS work. I don't know if injectible cortisone will booger things up for me and make the MS worse. Apparently the cortisone shots are not a cure for frozen shoulder. They'll help the pain, but it's not a cure. I could be stuck with a frozen shoulder for up to three years.

Really hope that I don't end up in unrelenting pain from the frozen shoulder again. That was so painful, I was close to doing something to myself to make the pain stop. It was worse than the MS stuff, but it also contributed to making the MS stuff worse. I don't think I could deal well with that kind of pain again.

Whine, cheese and.....
 

I get those horrible middle of the night leg cramps from time to time and it gets me out of bed fast. Usually takes a good deal of stretching to where I can get back to bed. Then the area is sore for a few days after. I think I might try that diatomacious earth smoothie I just read about. (I dont know how to spell Diatomacious so I guessed. She also calls it fossil mud) Whine, cheese and fossil mud MMMM!

I think you will find that magnesium would be very helpful for those legcramps, birdman.

I posted to you about that already.
There is also a lotion you can apply directly to your legs where the cramps are, at night before you go to bed. It is called Morton Epsom lotion, and still new. At WalMart's and online at Amazon.com

Many of us here use it...with spectacular results.
http://www.amazon.com/Morton-Epsom-L...n+epsom+lotion

A little goes a long way... just use about a quarter's diameter for each leg/calf. Do not apply to broken or damaged skin. (it will sting).

The magnesium in this lotion does 3 things:
1) improves circulation in the area
2) decreases pain impulses (blocks the NMDA pain receptor)
3) relaxes cramps of muscles

Also there are many many biochemical reactions that magnesium is a cofactor for...to numerous to list here.

Just venting a bit.
All is still going OK, but a full day of work yesterday sent the finger joints into their reaction phase. Two of them are so swollen and stiff that I have to use the other hand to bend them to squish the swelling out. That lasts for about half an our before they fill up again. Figures that they are the index fingers on both sides.

I'm working again today and am just home for lunch break, but I have another 4 hours to put in. Just took some Ibuprofen, which I have avoided doing for the past few days, but I want to do some gardening tomorrow and I don't think that I can with the fingers the way that they are misbehaving.

I see the specialist on Tuesday and am really hoping that he has something in his little black bag of tricks, as the IVIG seems to be wearing off.

With love, Erika

Awww, Erika..:(. I hope too, that your Doc has a magic pill for you.
Darn this MS and all it's tag-along carp!!:hug:

Lifting Mood
 

@Erika: I'm glad that your mood is lifting. Hopefully, that feeling will stay as long as possible.

Thanks so much Sally and Dani,

I did actually get out in the garden yesterday but these stupid fingers prevented me from doing some of the stuff that I wanted to do because those tasks required finger dexterity. I'm stubborn though, so I did some raking and even took a few trips with the wheelbarrow to move the lawn thatch and also some mulch onto the vegetable garden beds :).

That will most likely be what I'll do this morning as well but I'll be shutting it down in the afternoon as I have scheduled myself to work from Monday to Thursday. I do have Tuesday morning off from work when I will go see the specialist, so there is a break in those four days.

Sally, I hope that you are doing well. Have you hired some hunks to do your yard work yet? :D

With love, Erika

I saw a new specialist today and it was a total waste of time...for both of us. He knew nothing about chronic Parvo and for the first few minutes I sat there while he looked it up on his computer. I even told him what site to visit (Mayo).

He then suggested that I try prednisone to control the inflammation, and kept on suggesting it after I told him that I've had negative reactions to it in the past, and that steroids are not recommended for infection reactions. He then proceeded to do a physical exam, taking close notice of my hand joints and ankles.

He also tried to test the range of motion of my knees and insisted that I relax my legs so that he could bend them without the resistance of the muscles. I said "Uh...did you read my history? I have MS and the muscular resistance is spasticity from that, so it is not under voluntary control."
Hearing this, he tried to shove my right knee into flexion and just about got kicked in the head (darn hyper reflexes).

This guy was internist (from another country), and all he could offer was to refer me on to a rheumatologist if I wanted that. They must give out medical licences there in Cracker Jack boxes :D.

I called my PCP and told him how the consult went, so he had his nurse schedule me to see him on Friday. I'm pretty much done with this doctoring stuff now, but I'll go to see what he has to say.

With love, Erika

Sure he didn't just print off his diploma from the internet? Was he using Wikipedia to look stuff up?

I don't know where he was looking it up but he said that only 2 people with arthritis symptoms due to Parvo have been treated with IVIG. I asked him "In what universe?", but he didn't get it.
When I told him that I had already received IVIG for the Parvo, he asked me where I had received it (here).
Obviously we were not on the same page...or in the same universe. :rolleyes:

With love, Erika

I am never eating jelly beans ever again. Apparently I ate too many from my Easter basket last week, and now there is no "passing the cheese", or anything else.

That, and spasticity is causing me a lot of problems this week with walking, and standing. Which probably isn't helping the other problem.

geeze, I really hate MS. Really really hate it.

When I was in the hospital, they gave me some medicine that is known to cause seizures. It was a last ditch effort for the bladder pain and issues I was having because of the surgery. So, one nurse was getting things ready in case I had a seizure since I've had small ones before. Another nurse was in there too and they were discussing the set up of the equipment. One nurse was trying to explain it to the other nurse and asking if it was correct or if she knew. Well, each room has a computer in it and one of the nurses goes over to look it up on the internet. So I told them, jokingly, that it really makes me nervous when my nurses are consulting Dr. Google. They both laughed. It was the image of the set up that they wanted.

BTW - The stuff worked fantastic!!! It's called B&O. It's belladonna and opium. It's very expensive though as they gave me a prescription for it after I was discharged. I had a hard time finding a pharmacy that had it on hand and when I did find one, my insurance wouldn't cover it and it was $300 for a 14 day supply.:eek::eek: I didn't get it and just suffered through the pain and issue with a little oxybutynin.

Erika,
so sorry you're suffering...wish you could just drive to Mayo and get some answers from them...
I hope that someone somewhere can help ease your suffering. You're a real fighter, and that is so important in this fight against illness...:hug::hug:

You should have eaten the sugar free JBs and then,
you'd still be passing the cheese until next week. :eek::D

I took care of it this morning (not going into details for that,thankyouverymuch) :D

Called in sick to PT so that I could...take care of things...:rolleyes:

Now I've just called my shiny new physiatrist for a follow-up to the initial visit I had with him about a month or two ago. I am going to pester him to help me get hand controls for my car. I've given up on ever driving my car normally again. I need to take the keys away from my dad. He's pretty much voluntarily giving up his keys, but I need to be able to drive, and soon.

My dad is going to sell his minivan, and we're going to just have my car from now on. (that Toyota RAV4 I got last June and then I quit driving in July). I'm getting our contractor for our remodels to build us a ramp in the garage. More room in the garage to get the right incline, plus the garage would be sheltered, and we're going to set up a little bistro table next to the ramp for my parents to sit at. Also putting up a ceiling fan in the garage, to keep things cool when we're all sitting out there.

darn...I woke up this morning, and I still have MS. (I was hoping it'd go away overnight) I still feel like crap. Still having walking issues. Still having issues like I mentioned in my previous post.

I'd planned on getting up earlier today to call my neuro. I set my alarm to wake me up. I don't know what happened, but I don't remember my alarm ever going off. It should have gone off three hours ago. :mad: About to call my neuro now. I'll bet he has a half day today, and has already gone home.

Erin,
I hope that you get through to your neuro and get some suggestions. Feeling like carp for as long as you have is not good. Sending :hug::hug::hug:.

I saw my PCP a little while ago. He said to double up on the Modafinal for the narcoleptic fatigue that has increased lately. I'm to take the one in the morning and another in the early afternoon when I need it. I'm hoping that will do the trick because by 2:00PM this body has been doing the nod; which is not good, especially when I'm working.

The Cracker-Jack box licenced specialist had ordered a slew of blood work, which all came back OK, like I told him it would, as most of it was just repeating tests that had been done a month ago. My iron is a bit low, but I've had a bit of bleeding going on from the combination of regional enteritis and Ibuprofen, so I'll be cutting back on the Ibuprofen as much as possible. I can't help feeling like I've wasted a lot of tax payer's money this week by seeing the specialist, having the blood tests done and also seeing my PCP today :rolleyes:.

With IVIG off the table according to the PCP (and the specialist), I'm pretty much on my own with the joint thing now, because I refuse to take prednisone.
Honestly, I'm so done with these doctors, especially since they are all pushing me to try prednisone again. Both the specialist and my PCP have said I should try it and if my liver goes into conniptions again, that they will cross that bridge when we get there. Yeah...no thanks. Its my liver, and its me that will suffer the result, not them. I'll deal with the pain devil that I have now rather than the organ destroying one that I've had to deal with in the past.

About all that I can do is deal with the Sxs as they appear, and get on with my life. I've taken 4 days off from work to give the hands a rest, to get off of the Ibuprofen for a while and to try the increased dose of Modafinal.

I'm really hoping that in the next few days I'll be able to get out into my yard and garden to do something productive.
Venting - OFF. Stubbornness - ON :D.

With love, Erika

:circlelove: (((((Erika))))):circlelove:

:circlelove: (((((Erin))))) :circlelove:

:circlelove: ((((( Trish))))) :circlelove:

Doctors can be really annoying, when they say "try <medication you know won't work>, if there's a problem we'll deal with it then". Why don't they try it on themselves first. You know, for practical first hand experience with it.


I called my neuro, and of course I was right. He took the half day today. (he's the same age as my dad, so I'm not surprised he's taking half days.) I left a message for him to call me back on monday. I asked about getting an appointment, but he doesn't have any available until the 21st.

I have an appointment with the physiatrist next week.

I believe the neuro when he says that oral steroids are not good, and will probably make the MS worse, and cause other problems at the same time. It's just exhausting with the constant problems with everything. When I first got diagnosed, I got told that there's "all sorts of things they can do for MS". I'd like to know what those "things" are. I haven't seen anything that actually helps. No one will let me try the stuff that I've read about that seems to actually help people. (4-aminopyridine, or LDN)

My whine . . .ALLERGIES! Oh my goodness! They have been acting up so much lately. I dread this time of year. I broke down today and took an allergy pill. I just didn't want to go through another day with sinus pressure, runny nose, and sore throat.

Passing the whine & cheese . . .

My whine for the day.

My dad went to Burger King to get me and my mom something to eat. BK is entirely out of chicken strips! The whole city of Omaha...every BK is out of chicken strips! :eek:

The horror!

Consider yourself lucky, Erin..LOL!!:D

Apparently they debuted some new spicy chicken tender. Went over well, and they had a serious run on them. I just wanted plain ones. Not sure why they're completely out of all of them. Even the plain ones.

~grumble...complain complain complain...whine!~

<bunch of swearwords>

UTI's suck.

explains a few things tho.

Sorry Erin... Get better soon.

Erin - Sorry to hear about the UTI. I hope you feel better soon.:hug:

Today's whine . . .I don't whine or complain about having MS. I try to just go with the flow and have just gotten used to having MS. I don't usually get mad about it, but have my moments. Today, I'm having a big long moment. I don't focus on what it has taken away from me, just what it has changed in me and with me. There are positives to having MS and I remind myself of them often. Today, I feel trapped by it. I no longer have the ability to just get up and go like I did before. I only drive very short distances so I'm limited in where I can go independently. I know having the surgery has put me in a longer than usual flare, one that I can't take steroids for due to the risk of infection. I see progression. It's been slowly creeping in and when I look back to where I was shortly after being dx to where I am now, there is a big difference, mainly more fatigability, weakness, and gait trouble.

Today, I want to get out of my house and go do something. Go to the library, go visit DD's, go visit a friend of mine who is sick, go see my mom, go ANYWHERE! I took a walk around the complex and it helped, but the feeling is still there and on the brink of setting me off again. If I stiffle it, it will only come back with a vengance. Stiffling is never good. So, I decided to vent here instead of stiffling and hope that tomorrow I will be back to my accepting of MS self.

I hear you (((((Trish))))).

my boyfriend needs some cheese and whine.

He called me this afternoon to tell me about his "exciting day".

Seems he was on his way to work this afternoon, on his motorcycle, when a bicyclist rode out in front of him at an intersection. (boyfriend had the green light). He hit the bicycle's back tire with his motorcycle, and lost control. Ended up in a grassy median. Said he went over the handlebars.

Apparently just before he went over the handlebars, he put his foot down to try to stop himself. That's when his right ankle (fibula) broke. Then he was chest down on the median in the grass.

His bike is trashed. His ankle hurts a lot! The bicyclist got the ticket for running the light and causing the accident.

Anyone know who pays when a bicyclist is at fault in a car accident?

and for my request for cheese and whine.

my walking has been getting worse and worse. Tonight I was sitting outside with my parents. Probably a stupid thing to do, since it was 96F outside. I couldn't stand up. Then when I could stand up, I couldn't walk. I barely made it inside the house.

Then when I got into the house, I had to stop at every chair on my way to the stairs to get into the basement. I have an electric stairlift, but I needed my dad to come inside, and he just didn't get that I wanted him to turn the chair on the lift so that I could get onto it so I didn't go down the stairs ash over teakettle and hurt myself. I've been sitting down since I finally got down into my bedroom. I have no idea if I can stand back up now. Hope I can.

I feel really bad tonight. Little scared that my physiatrist that I'm going to see tomorrow is going to order a wheelchair for me. (I don't want one), and I'm also a bit scared that I'll end up in the hospital (and immediately go bankrupt because of the crappy insurance)

having a really really really bad week. I don't know how much more of this I can take.

You said,
"I feel really bad tonight. Little scared that my physiatrist that I'm going to see tomorrow is going to order a wheelchair for me. (I don't want one), and I'm also a bit scared that I'll end up in the hospital (and immediately go bankrupt because of the crappy insurance)

having a really really really bad week. I don't know how much more of this I can take."

I'm sorrry about your fall and boyfriend's accident. Hope you're both ok. :hug:

Do you use a cane or walker? Those are often prescribed before you need a chair, but a chair becomes a great friend and tool, when needed. Trust me.

If you are also on PLM, I wrote a (sort of) funny post called "How to know when you need a chair" It might help those who dread the idea of a chair.

Good luck, Erin, and let us know how it goes.

Karen
msbluis

I know you are young Erin but a wheel chair can give a person so much more freedom, stability, freedom to enjoy the outside world, it is limitless what it can give a person. And you just kind of learn to ignore the looks some people give you. I was really afraid, tentative, stubborn, you name it that was me. So I stopped going to the zoo, amusement parks, outings with my family. Then I decided I had had enough with this sitting at home pitying myself. My insurance got tired of renting me a wheelchair when my daughter was doing the whole college tour things so after about 4 times they just bought one for me. But when we go to a zoo, amusement park, etc, I feel it is worth the money to fork out a little money for my own independence and the comfort of my family to rent the mobility scooter. I have a basket, you keep the key with you, the seat swivels so you can sit at a table, you can let your grandchild fall asleep in your arms, I know bad girl. But it is so worth it. What gets me are the people who don't see you and they just dart right in front of you.

well, I didn't get a chair, but I did FINALLY get the Rx for the hand controls for the car.

He gave me a new Rx for spasticity. (no idea what it is. I can't remember the name of the drug).

He talked to me for a bit. Asked me what I do every day. I told him I don't do much because I don't drive, and my parents aren't all that mobile. So we sit around a lot all day. He kind of thought that if I got my hand controls, and had a little bit more ability to just get out of my freaking house, that I might start to feel better, and that might help me get moving around better. If I can get to a store, maybe I can go inside the store, and actually walk around. Do some shopping (or just walk around with a shopping cart).

He did say that the hospital he's at has a gym, and that they might be able to get me a "membership" to use the gym there. Or, I might be able to renew my membership to the gym that I used to go to. Said that I could use my walker to get into the gym and use their bikes.

Tomorrow I have to walk up and down the sidewalk in front of my house, at least once. Hope it's not hot out there tomorrow.


hey, while writing this, boyfriend called me. He'd called me earlier tonight, told me his big toe was numb, and it hurt like crazy. Asked if he should go back to the hospital. I told him that if he was questioning me if he should go to the hospital because his toe was numb and it hurt...that he probably should go.

He went back, and it turns out that his big toe was dislocated. (OWWWWWWWWWWWWWWWWWWW!!!!!!!)

They numbed him up, put it back in place, and sent him home. He says it feels so much better. He didn't sleep at all last night because of the pain. He gets his walking cast in the morning. He's excited that he might get to go to work tomorrow.

Now I'm happy that boyfriend isn't in pain anymore. He can sleep again, and go back to work. I'm excited that he's feeling better. Not surprised that he dislocated the toe. I can almost picture how he put his foot down, in the Fred Flintstone maneuver to try to stop the crash. Kind of hoping he can come into town next weekend to go car shopping with me.