Erika, my Dad used to get those seed catalogues. One time he read an article in one that suggested planting a 'pomato' plant. You take a potato, core it out and plant a tomato in that. Then you plant it just like a potato. What a bumper crop of both he had. They both fed off the other.

Doydie,

No fair!
Planting such an idea in an avid gardener's mind in the midst of a northern Canadian winter borders on cruelty :D.

Of course you realize that I will be hollowing out a potato, putting a tomato seed in it and planting it in a large pot...just to see what happens before it eventually either gets leggy and dies from lack of light in my living room, or needs to be dealt with in some way because it has outgrown its pot or its vines have taken over the living room.

Erin,

The fatigue as well as the ever changing symptoms is a great concern. Please see your doctor (I know what a drag that can be), but you need to make sure that you don't have an infection or that something else is going on that should be treated.

I think that some fatigue is a part of the MS for most of us, but what you are describing in your latest post seems extreme. Having to deal with ongoing symptoms and a few new ones entering the picture as well, can be a cause of the fatigue all by itself. But from what you have posted over the last few months, you and your family has had to cope with some major stresses and health situations as well. Maybe it is the cumulative effect of all of that over time that is causing the degree of fatigue that you experienced, but it really is important to make sure that something else isn't causing it.

Please be kind to yourself and your body, even when family members seem to not understand or fail to be empathetic. For sure your Dad and Mom have their own issues to contend with, so they may not realize what you are going through, so you need to decide what you can and can not do, through being honest with yourself first and foremost.
What is, and has been on your plate is a lot to deal with for anyone, never mind also having the emotional frustration of being young and physically disabled; and having a family’s health & mental/emotional issues added to it.

I worry about you feeling like you are stuck at home and also that you are spending so much time on your own, alone in your room. That’s probably similar to your parent’s concerns, and why they want to get you out for dinners etc. It does sound like some of their motivation might be for your mother’s benefit, but I do think that they have your best interests at heart, as most parents will.
Maybe you can satisfy them as well as your need to get some socialization and time away from home by making plans for a meal or an event with them in advance, so you have time to prepare for it and rest before actually engaing in it.

All of us need to get some socialization in, besides going to doctors and PT. That socialization might not include going out because of physical limitations, but it can still be satisfied by having others come in to visit, or even by spending some quality time with family at home.
Perhaps you can plan to have a meal delivered like Chinese food, and then you can all share that while watching a movie together and/or doing something together that you can all enjoy. Something like playing scrabble or another board game might do the trick. Anything like that might help to reconnect with family and friends in a more positive way, especially if you decide not to discuss health issues during that time, while still allowing for the needs that your body demands in the comfort of your own home.

Over the holidays I spent some time with shut-ins in my community. While some were expecting family & friends to visit, there were a few that had no one. Their disabilities had made it virtually impossible for them to go out on their own, so other than hired health care support services, like homecare, coming in a few days a week, they spend their time alone.

I can’t describe what a joy it was to be invited in to visit with them. My goodness, the stories that they told and the laughs that we shared…even poking fun at those able bodied individuals who were out and about, going full tilt, hair straight back in preparations for the Holiday Season, while we sat peacefully sipping tea, sharing stories and stroking their pets.
Although it was a bit of a struggle for me with this body to do that, I wouldn’t have missed it for the world.

To know that just a short visit like that brightened someone else’s day, and let them know that they mattered; that someone cared and loved them brightened mine as well. I found two new friends doing that over the holidays and although we may not see each other physically very often, I’ve been connecting on the phone and via email with them.

This Sunday we’ve planned on all getting together for a short visit at one of their houses so we can go over the “mysteries of how to send and receive emails”. I’ll be picking up the one lady and taking her over to the other’s house (the one that has a internet but doesn’t know how to use it very well), and then will deliver her back home again afterwards. Hopefully those two will connect as friends after that as well.

I know that this may sound pretty insignificant, but for these two women, and the potentials it has for reducing their isolation, it is very significant. It is also very significant for me because it has given me a greater perspective on my own situation.
Yes, I love my privacy and also very much enjoy living alone, but I now see the need to remain connected to others, and to expand my horizons beyond the walls of my home and mind.
There is a huge difference between living alone and being alone.

I hope that you will see that too and will maybe try to get some quality social time with your family and/or friends. It really does take the edge off of the physical symptoms and elevates mood, opens the heart, and puts some freshness of thought into the mind.
If not for them, do it for you :) :hug: :hug:.

With love, Erika

Sorry E :Drika

Erin can you Skype or face time any friends and have time with them. Anything to interact with people. Do you belong to a church that you could have a Bible study in your home. Let some one else host it so they could be responsible for treats. Any craft club?

Erin,

I second the idea of a craft club. I bet you would have fun getting together with others who knit, it is such a relaxing art, and not just anybody can do it.

Knitters rock!
 

I knitted my sock monkey that's my avatar...been making them since before they were cool..even though it kind of defeats the purpose of recycling old socks.:confused:

But wiz is right, that doing something with other people is a good thing.

I'm a member of an online knitting/crocheting group that's also a group of fans for my favorite tv show.

I just spent all afternoon online with about a dozen of them in a chatroom, talking about knitting, the new episode that was aired today in England of the show we watch, and just life. I wish we all lived in the same area. They're from all over. Some are here in the states, but at least two of the people I was talking are in New Zealand, and several in England. I really do wish we all lived near each other. I have a feeling we might all have a lot of fun together.

There's a whole group of us that are writing fan fiction together, (I'm not a writer, but I can think up scenes for someone else to write. But, I have written a couple of extremely short stories)

This group has been the most fun I've had online. They've been really helpful with my knitting. They've given me more help with things, just looking at pictures of stuff that I've knitted. I've been crocheting for most of my life. (since I was five, and I'm 44 now) So, at least I can help sometimes with crocheting stuff.

This group has basically helped keep me sane the past two years. Yeah, they might all be in other parts of the planet, but I've had tons of fun with them all online. I never would have even attempted writing the couple of short stories that I wrote if one of them hadn't actually challenged me to do it.

I might attempt knitting a sock monkey, or at least some sort of amigurumi (Japanese name for crocheted/knitted stuffed toy) I'll probably just end up crocheting a teddy bear or something later tho.

Erin the neat thing about having on line group from around the world means that you get exposed to so many cultures and experiences that you wouldn't if it was just local. I love my online groups. I love it that we are online. I find that I am much freer to speak and interact than I would be if they were here with me. Good luck with your monkey and stories.

I was taking Modafinil (Provigil) for the narcoleptic type fatigue, but stopped taking all meds except for LDN and Ibuprofen for a while in an attempt to give this body a rest from the medication trials and side effects that I've been going through over the past couple of months.
The body has been experiencing pain and spasms (especially at night and in the morning) as a result.

I started back on the Baclofen to control the spasms so I could get some sleep and that seemed to be OK. Then I began taking Modafinil when the extreme day time sleep episode-fatigue thing kicked back in last week. Hmmmm....a "rare" side effect of that drug is joint and muscle pain, and I've certainly got that going on over the past few days.

It has left me with quite a problem because I've been needing to use my cane to take the pressure of my back and hip spasms, as well as to help me walk because my left ankle is swollen, stiff and painful. But I haven't been able to use it very well in the last few days because both of my wrists are screwed and pressing down on the cane is just too painful. Sitting makes the back and hip spasms worse, as does laying down for too long.
Looks like I may need to go to my crutches because I need to move around more, and the crutches will put some of the body's weight onto the arm pits.

Speaking of which, this is definitely the pits because I'm now off the Modafinil again to see if that was causing the increased joint and muscle pain; so I'm nodding off in the middle of things again. In addition to that, my left leg and hip spasms & pain have become down right nasty, so its back to the PCP if it doesn't settle by tomorrow...and that probably means trying yet another drug. Can't live like this without some sort of medication, at least to control the pain; yet I'm loathe to try something new :(.

Passing the cheese...

With love, Erika

Sheesh Erika.:(. Enough is enough already!!

I hope the Doc can find something to help take your pain away
or at least, get it down to a gentle roar. Feel better soon..:hug:

I'm seeing him on Friday, as things seem to be getting progressively worse today. Urgh...you are right, enough already.

With love, Erika

I went back to the doctor that I saw about the shoulder. Partly as a follow up, but also to talk to him about the other shoulder starting to hurt.

So, he examined both shoulders mobility. He was impressed with the mobility to the one that he treated in December. Really pretty excited at all the good progress. I'm going to tell the physical therapist on friday when I see her. I bet she'll be thrilled.

He looked at my other shoulder, and he said he could tell that things were a little funky there. But, he said that if it's frozen shoulder, and he thought it was, that it was really really early stages. He figured giving me another shot of cortisone might head it off. So I got two stabs of cortisone.

He told me the FS is NOT from the MS. I was pretty glad about that. Finally! Something that I can do something about! yay!

I told him that my neck had been hurting when I turn my head to the right, and that the pain in the shoulder seemed to be bothering my neck, or the other way around. I couldn't tell.

He was interested with that. Said that it might not be FS then. So, to rule out something in the neck, he made me get x-rays of my cervical spine.

He was all excited about what my cervical spine looks like. He came in and said that my cervical spine was beautiful. He wished he had one as good as mine. He even showed me the x-rays. Said that the part he was worried about, when you look at the spine from the side, there's these holes in the spine that the nerves run thru. He said those were perfect. He said it was possible I strained my neck at some point, and that the pain in the shoulder was referring to it and making it seem worse. He said those cortisone shots would help that.

I forgot that in December, when I got the shots for the other shoulder, that later that night, the pain in the shoulder kind of spiked. I forgot again. I should have taken some ibuprofen when I got home, and should have put ice on it then. Whoopsy!

At least it's not as bad as the other shoulder was. I can deal with this a lot easier than I could the other one. The pain from the other shoulder was so bad, I was inconsolable. I was just really really scared that the right shoulder would keep getting worse to the point that I would be back where I was when the left shoulder was bad. Hoping that the shots helped.

He didn't give me PT for this shoulder. So, I told him that when I do PT for the other one for the next few weeks. I'll just copy what they show me there at home for the right one.

I really like that doctor. I hope I don't have any more problems that I need to go back, but if I do, he's the guy I'll be asking for.

On another note, when he came in, I was reading a book on my iPad Mini. He asked what I was reading, and I told him it was a Sherlock Holmes book. He asked if I like BBC Sherlock, which happens to be my favorite show right now. I kind of fangirled about it, and talked about it a few minutes. I told him that the new episodes would be on here in the US on PBS on the 19th. He said he'd watch it. He'd been wondering about how the mystery at the end of the last episode was done. I didn't spoil it for him. I told him it was pretty cool tho.

It's weird, I keep running into doctors that like Sherlock Holmes and Arthur Conan Doyle (the original author).

My neuro likes Sherlock Holmes. He has pictures of Sherlock Holmes on the wall in his office, and I asked about it once. My neuro said he uses deductive reasoning in his practice when he's diagnosing a patient. I thought that was cool. My neuro is Sherlock Holmes (or a really good facsimile of one)

So glad that I got to keep my neuro when my insurance dropped my policy and I had to get a new one.

Sounds like you got a really good doctor, Erin. Wish they could all be like that!

yeah, I wish they could all be like that too. I'm kind of annoyed tho, that this doctor is actually out of network for my insurance. (works for the same hospital group as my doctors that I lost...which so far, I haven't dropped myself. I'm still planning on using my old doctors for some stuff at the moment, even if the insurance is being a pain in the ~mumble~ about it)

the cortisone has kicked in!

I can feel things feeling a little bit better. Shoulder pain is better, the neck pain still hurts some. And, the MS stuff, some of that feels a teeny bit better. I know it won't last tho.

I need to figure out what to do with the energy while I have it. I might try going yarn shopping...maybe go to WalMart.

See if maybe I can use the energy to do something in PT this week, if it lasts that long. Maybe I can use it to get going on some of the PT stuff for balance.

I don't want to ask too often about getting a cortisone shot, but now that I know it seems to help a teeny bit better than oral prednisone, or IVSM, maybe I can occasionally get a single shot of cortisone if I ever need a little bit more energy for something. Maybe next Christmas, I can get a shot of cortisone in my butt or something a few days before Christmas, and then use that to get thru the holiday. Hope the cortisone keeps working if I end up asking if I can do things like that. Plus, cortisone doesn't taste nasty like oral pred does. Easier to take too. Maybe I can try to keep requests like that down to once a year? (which means I just used my once a year shot yesterday on the shoulder)

I'll just have to remember to ask my neuro about it the next time I see him.

Sounds like all in all you had a good day Erin. You really needed one of those!:hug:

Erika, sheesh…the meds help one thing and make other things worse…I hope you feel better soon...:hug:

Well, that certainly was quite a work up. Physical exam, 7 vials of blood for tests, urine, and x-rays (hands, ankles, hip & neck...yes that has joined the club now too).
Here's hoping that something shows up...and that is treatable. He didn't think that it was MS related...more like some sort of acute destructive arthritis.

He wanted to admit me to hospital and put me on IV steroids. I react badly to steroids due to liver damage, but he said that it may come to having to use it, while keeping an eye on liver function in hospital.

Did I pull a face? Oh yeah....along with a strongly expressed desire to stay out of there if at all possible.
We settled on continuing with Ibuprofen and waiting for the test results to come in first.
He prescribed voltaren (Diclofenac) lotion for the small joints, and that actually seems to have helped a bit after three applications. I can bend my wrists better and the pain in the finger joints is less. It might cause problems for the digestive tract he said, because it does affect the rest of the body, so I'm hoping not.

At this point I'd eat dirt if that would make the pain stop. Small movements of the joints (like writing and typing) are OK, but any pressure or strong muscle contractions in the hands is down right nasty. That's especially so in the mornings.

I had to ask another patron to open the gas cap on my truck when I went to the gas station this morning because I couldn't hold on to it tightly enough to turn it because of the pain.
Same sort of experience when I went to shift out of 4 wheel drive when I got onto the highway. All that needs to be done is to push the stick shift forward, but it hurt too much in the wrist to do it.

My gut feeling tells me that this joint stuff is temporary, but at the same time I'm facing the potential reality of my massage therapy practice and that end of my career going bye-bye.

With love, Erika

Erika, that is so troubling! my heart goes out to you.
I can't do the gas cap thing either. It is more from hand weakness than pain. I'd have some pain if I tried to do it, but mostly I'm too weak in my arms to put the nozzle back into its holder when I'm finished. I have a station which does it for me, but if a new pesron is on duty, I have to explain all over again, and I feel foolish and sad for having to do that, because obviously I'm walking and looking pretty normal.
I am praying for you to improve and not lose your career. I have been mourning my career lately, as I would love to be out there doing something very interesting such as my teaching was. It was 28 years ago I had to give up, after years of fighting every way I knew how to carry on.

Erika,
Would a narcotic like Norco help lessen the pain a bit? I hate to hear that you are in such discomfort…the quality of life sure seems dismal when you are hurting and so limited in movement…
I assume they've done a SED rate and ESR (?is that right abbreviation)…to rule out RA…are you sure it isn't fibromyalgia?

Know that our thoughts and prayers are with you as you continue on this not so fun journey...:grouphug:

Unfortunately this body is allergic to morphine, so I stay away from narcotics. The lab requisition did include all of the usual tests for the auto-immune diseases, as well as inflammation and infection markers, kidney and liver function, so it will be interesting to see the results.

I don't beleive that it is fibromyalgia, as the problem seems to be in the joint structures.

With love, Erika

I'm going to see if I can get back in to see my PCP today to get something for this joint pain and swelling. It has kept me up for most of the night, and I've lost the ability to use my hands beyond small, light pressure movements; to the point where taking care of "necessities" in the bathroom has become a problem. I don't even know if I'll be able to drive today, so may have to ask my friend to take me.

I don't want to wait until my scheduled appointment on Thursday because I'm concerned that some damage is occurring in the joints; especially in the wrists and a couple of fingers. They feel like the bones are broken or are displaced (really sharp pain and a cracking sound on movement), and the swelling has gotten worse since Friday.

I'm willing to do steroids at this point, even if it means being admitted to hospital.

With love, Erika

Oh dear, Erika! :eek: That sounds painful. I hope the doctor can prescribe something to help. Let us know how you're doing. :hug:

Hope you can get an appointment and your pcp can figure out what is going on and find something to help. Thinking about you.:hug:

Keep us posted Erika. :hug: I wonder if you have been overdoing it with all of the cooking you've been doing lately. That can be hard on the hands and wrists. I hope it isn't serious but easily treated. :hug:

Erika, I posted on a separate thread a naturopathic remedy duo for joint pain. Might be worth a try. With your hands the way they are it would be hard for you to even get the remedies out of their jars, but you can easily order them from Amazon, at least. I ordered one of these last night when I was up asomnolent.

Prayers for an answer…and for relief...:grouphug:

Erika - I was wondering where you are. I hope that you have gotten some help by now.
ANN

Other than those of you who were ill or recouperating from surgery or something,
did any of you, besides me, have a complete breakdown of strength and energy,
after the holidays? I am just now, beginning to get my strength back. I thought
maybe, it was a flare, but now, I believe it was a fatigue attack, from trying to
be and celebrate the festivities, as a normal well person.:mad:

Now that I'm beginning to feel better, I can complain about it, with a clear
conscience.:D

Sal, it's amazing how much the stress of just being around people for a change takes it's toll…I think we forget the various triggers that can put us in a day-long snooze fest…

Glad you're feeling a bit better:hug:

Worried about Erika.

The hug had me gasping in pain yesterday. Not only was it tighter but I was also having intense muscle spasms in lower back. Usually when I lie down it is not as bad, but I just could not relax last night. I always have a uncomfortable girdle feeling on my left side (rib cage and back) but it definitely seems to be worse when it is cold out.

I hope that Erika is getting help for her pain and will be home soon to see her fur babies.

Barb,

I'm sorry for your pain from the hug.

I am on my sixth day off and managed to get some cleaning done around the house. Next time I take a stay-cation I'll do it in the spring so it might be easier to get motivated to get things done. :rolleyes:

Barb, do you have stretches you can do to at least help loosen your back? I used the ones from NMSS and they help a bit…the hug stinks big time because it is so difficult to get it to let go:( I hope you can get some relief...:hug:

Wiz…my dear friend…you remind me of my sweet DH. He cannot for the life of him sit still, even when he is sitting still;) Sometimes I think you are trying to use as much of your energy and movability available due to fears it'll disappear (my greatest motivation to burn both ends of the candle earlier in the day-the late afternoons are like slogging through concrete). hope you feel better:hug:

"Sometimes I think you are trying to use as much of your energy and movability available due to fears it'll disappear"

Boy, that sure hits home Deb.
It seems impossible to remain between the lines of doing too much, then paying for it later, and not doing enough, then loosing ground because of that...especially because those lines don't remain constant.

One day some activity proves to have been too much and the next day, that same activity was not enough, causing more stiffness, spasm and pain.

This morning follows a day of apparently doing too much, although I actually didn't do much (really I didn't), because the joints were too angry yesterday and I had the usual leg spasms, and a headache with neck stiffness.

The MS Sxxxx's are still going on this morning but the one saving grace is that the right wrist is a bit better. I can at least use it to hold the cane on that side, which takes some of the weight off of the left ankle, knee and hip.
On the minus side, overnight the second toe's joints have become inflamed, painful and swollen to the middle of the arch of the right foot. I can walk on the outside of that foot to avoid putting weight on it, but it still makes for a pretty unsteady & gibbled walk. Using the crutch on the left side is out of the question because the left wrist is too painful to even rest it on the hand thingy.

I've smeared Diclofenac on most of the inflamed joints and have taken two 400 mg doses of Ibuprofen since 2:00 AM, so hopefully those drugs will kick in soon. At this point though, I'm just trying to get back between those invisible lines.

There's certainly an abundance of whine here. Passing (on) the cheese...:winky:

With love, Erika

Ok, I am off of my low dose estrogen pills per my gyno doctor, and taking the Evista pills each morning. Those are the ones that lessen the chance of breast cancer in people with higher than normal risk factors.

First, the pills are pricey, even with my insurance they are $120 for a 90 day supply.

Now, the side effects, they wake me up at night with not so much sweats but just active dreaming then it takes me up to an hour to get back to sleep.

I'm hoping that will decrease over time though, I have bad sleep patterns as it is.

I will need to take these pills for five years. :eek:

not feeling good lately. Walking has been kind of weird. Almost feels like it gets worse every week or so. It's worrying me a lot.

seems like if I say anything to a doctor about it. It gets ignored.

on a brighter note that has nothing really to do with my health. My dad told me I could do a little construction in my bedroom. I'm moving a wall to make it easier to get into my bedroom when I'm using a rollator. Plus, moving the wall will turn my bedroom and bathroom into an ensuite. I'm kind of excited.

I'm going to paint the walls a new color, and possibly get some wallpaper on one wall.

only problem with this plan, is that my room will be a construction zone for a few weeks. Not looking forward to that. Hope it can get done quickly.

Wiz,
I'm hoping that your system settles in with the change in meds and that you get some sleep. Changing hormones and meds will often cause the dreams, and it usually does adapt in a relatively short time. Maybe taking a bit of magnesium, or an Epsom salt bath (if you can get in and out of the tub OK) before bed might help.

Erin,
Sorry that you are having walking problems. That is such a concern, especially with the shoulder problems that you've been having. Please be careful that you don't over use them.

Changing our environments can have an awesome affect on our sense of well being, so doing some remodeling might just be a wonderful boost for you.

With love, Erika

I love doing remodeling. So, that's something to look forward to. I just hope it doesn't take as long as the last time we did some remodeling. At least the contractor I have does good work, and the decorator that we're using seems to have figured out the style of stuff that I like. This is kind of why I'm actually thinking of doing a wallpaper feature wall. Finally starting to feel comfortable enough with actually decorating to do more than just throw paint on a wall and call it good.

Gulp…after reading what I'd posted in bold print, Erika, I hope no one thought I was criticizing Wiz…I just am amazed at how much she does in a day…and you also!! Even with all of your problems you still manage to fit in so much in a day.

Erin, hope you listen to your sore body…take it carefully!!

PT was difficult today..I'm so tight that the PT was having difficulty mauling me;) both the hamstrings and quads were uncooperative. We discussed the limitations that Medicare has on the total number of PT sessions a patient can have per year, since I was thinking of having surgery on the other knee. If I do, then I'll have to cut back on PT on this knee. But the knee is only straightening to 16 degrees (the "good" knee straightens to 12:roll eyes:)…she would like to get it to straighten more before I go on vacation, and also to get more bend-it's at 100 degrees now and she'd like it to get to 110 degrees. The MS is impeding progress, though…but she feels we can get more out of it. But still…stupid MS:mad:

Deb, I certainly didn't take it as criticism, but rather as loving advice from the voice of experience :hug:.

Hoping that the MS quits interfering in your knee rehab. Having one thing to deal with is hard enough, but it is especially so when a couple of them conspire and gang up. (The voice of experience talking here :wink:.)

With love, Erika

PT is such a help. I"m hoping I can get away with no surgery on my shoulder. I've been able to put it off for 12 years, but if it isn't hurting I get lazy about doing the "pulling" exercises with the band attached to the wall. Also get lazy about using frozen peas to ice it after exercise. The PT has kept my hips and pelvis in alignment for years, as well. Reason I don't want surgery on shoulder is this: last surgery on L. shoulder (to remove prongs or whatever they are called) was successful, but bad PT following surgery pulled soft tissue in left hip, and I was in hospital and in nursing home two weeks, and then on a waker, and the pulled tissue has always been weak--thus the need for constant exercise (nightly) and PT. And I think I'd have to go to CA to trust anesthesia, as well. To Scripps. Costs too much although I would enjoy the trip.