Good news, for a change!
 

Wide-spread joint pain for months and months...

Went to an rheumy, orthopedist, and to PCP again to rule out things; and everyone pretty much assumed the pain was because of my MS treatment Tysabri. I got 3 treatments of IV solu-medrol before treatments and that seemed to help for a few days after.

My PCP put me on an NSAID for arthritis, but it didn't help.

I guess my neuro is sending me to a new rheumy in the city (appt. is Nov. 2nd). In the meantime, she increased my lyrica (now 150mg am, 225mg pm) to see if that helps, and my PCP just gave me a script for 50mg of tramadol 4 times a day. It seems to be helping finally!!!!!! :)

Also, I ordered a new mattress and it arrives Tuesday. I hope that will reduce the number of times I wake up during the night in pain.
But I'm a little worried because I also see the new MHRN Tuesday at 9:30am. I hope the delivery company can come after I do to the appt. I have to call in the am to see if they can accommodate that.

-Kay

Dear Kay

that is great news!!!! :):hug:

good luck with the mattress people... they should be able to accomodate it. i think the worst that could happen is they will reschedule you for wednesday delivery.

hope you like the new practitioner!

~ waves ~

Good luck with the rescheduling of time.

I take a nsaid with codeine. For pain when I need it.

I take it for fibromyalgia and arthritis.

Donna

Dear Kay,
You've been busy.
That's so great that the neuro and PCP have helped you get good meds! :circlelove:

Enjoy the bed. :Zzzz: :)

M.

This is great news kay!!!!!!!
I am hoping that your new bed arrives timely and that you are able to sleep better with it.:)
bizi

Thanks guys! :grouphug:

Unfortunately, I'm still having low-grade fevers everyday (99.6-101.3). They've ruled out infection so many times (CBC w/diff, chest Xrays, blood cultures, urine) and it all turns out fine. I bet it has something to do with the joint pain. But it's much easier to be patient waiting for docs since I'm not in all that pain!

It's still working!!! I've been in such a good mood (not manic) because I am SOOOOO much more comfortable! :D

Donna, tramadol (ultram) isn't a narcotic, but it's like a narcotic. I can't handle codein because it makes me very nauseous, sweaty, and light-headed.

I spoke to the delivery company this morning and they expect to deliver between 10 and 1. I let the gentleman on the phone know that I probably won't be home until around 11. He assured me that they will not leave the mattress outside and he will be in contact with the delivery guy. :)

I'm a little nervous about the appointment with the new "shrink." I hope that I'm comfortable with her and things work out. I'll be sitting there in an hour, so I guess I'll find out soon, and will report back!

Thanks again,
Kay

Dear Kay

that's great that the pain meds are still working. :) i can appreciate that comfort has a profound effect on mood!

regarding the joint pain / fevers... Kay, have you been screened for lupus?

i am glad the mattress delivery folks are going to take care of you.

i hope you like the new 'shrink' ... look forward to hearing about it. :hug:

~ waves ~

I hope it goes well for you today!!!!
pdoc is the commonly know abbreviation here for psychiatrist....just to let you know.
bizi

Hi guys,

I like the new "pdoc," but she is a real talker. My appt. was at 9:30. I probably got in at 9:45.... I didn't get out of there until almost 11:30!
I am a complicated case, but jeez! She didn't make any med changes, but agreed that she will reduce my zoloft if I become manic again.

The mattress people did NOT take care of me. When I got home from my appt. I had a message asking if they could reschedule delivery until tomorrow because a driver had a family emergency. I called back and left a message, and someone called back after 1 and told me that my delivery wouldn't come until tomorrow because a driver got sick on his way to work. It didn't matter that I had spoken to the dispatcher at 7:30, and he said it was on.
I guess it's good that I don't work, but I already stripped the bed...

Waves, I have been tested for lupus in the past and was negative. I also get rashes sometimes.... It's common to have one than one autoimmune disorder, and I think that's why I'm being sent to another rheumatologist.
I put a call in to the MS Ctr. about the fevers. I haven't heard back yet, but they always want me to UA/CNS (urine culture and sensitivity) or go get another work up from my PCP.

So, we'll see what happens: mattress, pdoc, fevers, rhuematologist, etc.
For now I'm satisfied with adequate pain mgmt. :)

-Kay

wow... that is a good "intro" session report... she certainly doesn't seem to be too hardnosed about making time for you when necessary. glad you like your new pdoc so far... hoping this will work out. when do you have to see her next? until then, is she available to you - can you call her, if need be?

i agree, having the pain in check is a huge thing while the investigations are ongoing. :) as to that, let's hope the new rheumy is inspired...

sorry about the mattress mess-up. :( i guess you must have spoken to the dispatcher before s/he found out the driver was sick. well that sucks you have to do double work... :(

fingers crossed for tomorrow. :hug:

~ waves ~

Dear Kay,
I hear you.
'Totally wonderful that you have gotten some good pain mgmt.
I'm happy to hear that you feel good about the therapist too.

Soon you will get the bed. You've gone through some big changes and you have some more good changes in the future. :)

M.

Thanks waves.

The new pdoc usually gets to returning phone calls at about 8pm. Also, there is always a doc on call.
She doesn't do the regular 15 minute follow-ups. She takes 30 minutes.

It sounds very promising.

They told me 8-11 for the bed. It's 9:45 now. Fingers crossed cuz I stripped the bed again.

-Kay

Pdoc does sound promising. :)

sooooo.... did the bed make it???? :o

~ waves ~

I still had no mattress at 12pm. I called and they told me something had come up and I'd receive my mattress "later in the afternoon."
It still wasn't there when my husband came home, and he flipped out. I asked him to calm down- and not set me off.

I finally got my mattress set just after 6pm last night. The guys who delivered it were fast, set it up, and took away all the old stuff and packaging. I mentioned to them that their dispatch staff had some customer service failings... and then the driver told me that the Tuesday delivery cancellation was his fault because he got arrested Monday. :confused:

Based on what it says on the receipt, the delivery co. is a sub-contractor. So, I'll be contacting the contractor. I have already contacted the co. that I bought the set from.

UGH. So, I slept right on my anxiety last night, and had a pretty bad anxiety attack. I'd relax, and events would enter my mind, and it was like my heart stopped (I knew that wasn't the case). I took 1.5 mg of xanax, and was able to fall asleep at about midnight.

I'm happy with the quality of the new bed, it's much better than the old one, but I didn't feel like I was sleeping on a cloud, but I know it takes several days to get used to a new mattress.

So, that's that. I feel free today, since I'm not tethered to my apartment awaiting a delivery. I'm going out for a late lunch with my best friend.

-Kay

so glad that your bed finally was delievered.
yikes! wonder what he was arrested for?
anyway
have a great lunch with your friend...always like to hear that our friends here have real life friends too.:)
bizi

Dear Kay,

I hope that the bed works for you.

Well, I guess he had a bad day or two?! :eek:

Wow. That is some serious anxiety. I take benzos every night.
Maybe you only take your Xanax when you need it. I'm glad that it works for you.

At least that is over with for now and you can sleep in it for a few nights and get used to it. I really hope that you fall in love with it soon.


M.

Dear Kay

i hope you have a good time with your friend at lunch today.

glad the bed made it finally... what a frustrating ordeal. i can appreciate their not being upfront about the arrest (or maybe not even knowing) but i would also have been irritated with all the mis-information and late information and multiple delays.

1.5mg Xanax is a good bit and yes, serious anxiety...

i guess i used to take 2.5's of lorazepam as needed which is not far off and when it was bad i would use 2, occasionally 3 of those tabs! :o nowadays am getting away with just a half tab.

but regardless of your current level, it is important to take enough that it gets you over the hump. no sense taking subtherapeutic doses.

i hope you sleep better and better.

~ waves ~

I didn't ask the kid about his being arrested. He looked like he was about 16, and I figure it was minor or drinking related. Either way, I didn't want to know.

I take 0.5mg of xanax in the am and before bed. I have one for a PRN. I took 1mg more after that anxiety attack. It was REALLY bad, and I wasn't going to mess around.
I haven't had an anxiety attack like that in a while. Feeling like my heart stopped and couldn't breathe... I tried all that guided imagery, deep breathing, and counting back and forward from 100 and nothing! I needed more xanax.

I didn't have any issues sleeping last night. :) Still not sleeping on a cloud yet. Hate my new pillow... but it takes time.

I did have a great time with my friend yesterday. I always do! Our husbands get jealous, though. And they don't like us spending money. My husband threatened to take away my debit card last night, but all I bought was k-cups (we were out) for $20, guitar strings for him for $6, and a candle for $9. My BF bought shoes for $50, and a new quilt for $50 (I talked her out of all the other stuff she was carrying around).
Next time we have a "date," we'll watch a movie or have a double date over here & I'll cook.

Thank guys,
Kay

You did not spend that much stuff, maybe he was afraid that you would and it was a knee jerk reaction...hope it wasn't jealousy that you were out having fun.
shoot going to the movies can be jsut as expensive if you do the whole pop corn and pop....
glad that you had fun!
$50 for a quilt is a great price!
bizi

It was an excellent price! Entirely 100% cotton. Beautiful stitching and pattern. She got it at Marshall's. She's concerned that it's thin and was going to buy a sherpa blanket, too? A good quality quilt is just enough in the summer, but plenty warm in the winter with a standard blanket underneath.

I have a beautiful quilt that she was very jealous of. When I got married one of the nurses gave me a $50 gift certificate for Bed Bath and Beyond. It was on clearance, I had the gift certificate, and I still paid about $60. It's wonderful, and nothing could replace it. My husband loves it. My cats have gotten into a bit of the embroidery, but we don't care.

She'll be very happy with her quilt, and she got a fabulous deal!

My husband isn't happy that I bought a new mattress, but we needed it. I know I didn't buy much. He has nothing to do with the finances- his choice. If he takes my debit card away, he can buy the groceries and everything else.

He is jealous of the time I spend with my BF even though he really likes her. He's also jealous of my father and brother. Well, TS!
She's a forever friend. She'd do anything for me, I'd do anything for her. It's a rare thing to be lucky enough to find a friend like that.

Dear Kay,
It's fun to read about your shopping finds.
M.

i find myself longing for a quilt.

it sounds all squooshy and cozy and homey and comfy and just wonderful.

~ waves ~

Mari, I'm definitely a clearance queen! I do a lot of shopping online. I prefer to do it that way for a lot of reasons. I get a lot of great deals, but wouldn't go that route when buying a quilt because I need to feel stuff like that.

Waves, quilts are wonderful! Just make sure you get a good one. 100% cotton throughout with nice strong stitching. You'll love it!

-Kay

Update
 

I love the mattress!!! So does my husband!

I have started having some significant breakthrough pain despite the tramadol. I'm going to stick it out, though. The pain is mainly tolerable.

Still having the fevers.

I've pierced a couple of things in the last couple of weeks: I already had 2 studs in each earlobe but just pierced my cartilage on both sides as well; also had my nose done a few weeks ago. My belly ring was done years ago.
I already have 3 tattoos (including a Celtic knot necklace). If I had more $$$ I'd probably be getting tattooed right now.
I have an appt. with my psychologist Thursday... maybe she can tell me what all that is a sign of?

Very tired today & my pain is bad. I'm going to lay down now.

-Kay

I am glad that the matresss is working out for you.
naybe there are too many things that are out of your control so maybe the piercings are your way of taking control of your body????
rest when you can.
bizi

I agree the piercing is what you can control.

Donna

Bizi and Donna,

I think you're right on the money.

I was aware that I was taking control over my body when I did the mega neck tattoo. I love it and still feel empowered when I look in the mirror. Funny that didn't occur to me regarding the piercing?

I guess my appointment with the psychologist is today. We'll toss this all around a bit. I really don't have a lot of control over things, especially my body. Maybe I need to address those frustrations before I run out of places to pierce.

Thanks,
Kay

Dear Kay

i am glad you are figuring things out re the piercing/control. that does make sense to me also. i hope your psychologist can help you with further insight and other ways to cope. let us know how the appointment goes.

i am sorry you are having so much pain again in spite of the tramadol. :(

:hug::hug::hug:

~ waves ~

I had some trouble trying to vote in the primaries yesterday, so I kinda had my Irish up when I got to the psychologist's office...

We did discuss the piercings and lack of control. First I was angry thinking about how my life has changed due to the MS. Then I cried about all the things it has taken away from me: my career and the ability to return to work, my mind, my mobility, deciding not to have children...

I really can't get into anything indepth right now. I don't want to cry. I have to drive myself to Boston because my father bailed on me (I'm not surprised).

Thanks guys,
Kay

gosh kay that was alot of things to get into.
no wonder you are feeling sad about your losses.
jsut the loss of not having children is enough and a biggie...emotional battle for acceptance.
good luck in your drive to boston I wish you did not have to go alone.
((((HUGS))))
bizi

Hi Kay!

That is awesome news you have a new treatment and are on an up hill swing to feelling better! :)

A new mattress helps a lot. We had our mattress for 18 years and finally broke down and bought a new one. Since then for some strange reason??? I have been able to sleep sound again from years of insomnia. It does help make a huge difference. I hope you get your bed soon so you can rest.

Hugs

Coffeegirl

Well, I made it home from Boston. I had a slow and lazy(?) nurse doing my infusion so it went an hour+ over and I got stuck in traffic. I left at 11:45 and got home about 6:15. LOOOONG day for me! I know I shouldn't be driving myself, but I don't have another option.

I'm always afraid that they won't be able to give me my treatment because of an elevated temp. I was only 99.1 yesterday, so I was safe. Once it was higher, but the nurse waited and rechecked it, so the show went on. I would hate to travel so far and not be able to get my treatment.

They took a bunch of my blood to test CBS, liver and thyroid functions, vit.D, etc. They'll let me know if anything comes back sketchy. I have to go to my PCP because I've had a lot of tonsilitis in the past and have craters & permanent whitish yellow spots (tonsil stones) that could be a resivior for infection. Maybe causing fevers.....?

===========

I think what hit me the hardest with the MS is it ended my nursing career. It was a calling. I took care of my mom, 2 grandmothers, my brother, and hundreds of patients. I loved what I did. I made a difference everyday. And I was damned good at it. It's like I lost my identity. It was one hell of a grieving process.

I've decided not to have children for several reasons, but I'm not at peace with that yet.
-I've been told that pregnancy wouldn't be safe for me because of my type of MS.
-I'm on multiple medications that keep me stable in a lot of ways, can't keep taking them while pregnant and wouldn't be stable without them.
-I'm a fall risk. What is I fell holding a baby?
-It's hard enough to get myself to appointments, how would I get the baby in and out of the car?
-I wouldn't be able to care for a baby on my own. My husband isn't likely to be helpful & I don't have any source of continuous support.
-My mother died at 46. I'm 30. I don't believe it would be fair to bring a child into this world if it's likely I could leave them so early.

It's A LOT to deal with. Most days I'm able to accept things and live life, but sometimes it's necessary for me to acknowledge my losses and grieve. And have a big cry about it all.

I broke down in front of my husband. I never do that. I don't cry about this crap, or talk about it to him. He was very supportive. He rubbed my back and just listened....

-Kay

(((Kay)))

that is a lot to grieve. good that you allow yourself to cry about it when you need to.

i am glad your husband was supportive.

~ waves ~

Dear Kay,

I'm sorry that you lost your mother when you were so young. :Heart:
M.

Thank you for sharing kay.
you have a lot to cry about.
let your husband in on this, you guys are a partnership, there to support each other. I am glad that he listened to you.
I jsut wanted to say that I am sorry....
(((((HUGS)))))
bizi

posting!
 

I see that to go to the chat rooms, new users must post **. do they mean here?

Dear Kay,
That's a long day. How often do you have to drive to the big city for treatments?


I don't want to sound like a nudnik but don't take the office's word for it. Call and check. Especially check vit D. What the labs consider normal range is low. My hubby and I go to the same mdoc. I came out low on Vit D and she put me on 2000 IU of D3 a day. Hubby came out very low normal (3 points from me) and the mdoc said it was fine. :confused:
I bought vit D for the both of us. :cool:


I hope that the PCP can help you in case you have an infection.

Loosing a career is hard. How long ago did you leave it? :(

I think that thinking about not having children is hard when you are already depressed. Depression makes everything dark and deep.


Please be ok.
Let your husband continue to help you.
M.

yes they want people to be a part of the forum family.
Are you affected by bipolarism in one way or another? there are many diffeerent forums if you look at the index.

welcome to neuro talk there is also a new memeber forum to welcome you as well.
bizi

I have to go once a month to Boston for treatments, but I have 3 doctors there and have occasional appointments. Sometimes I have to drive there for MRIs too.

My neurologist is very big on B12 and vitD levels.
I gave myself B12 shots for years, but can't do injections anymore. I take 5,000iu 3xweek of methyl-B12 sublingual tablets. You pee out the excess anyways.
She had me at 50,000iu once a week by script. The script stuff isn't really D3- it's ALL D2. So, I get it OTC in D3 form. I have to take less now. Only 2,500iu 2xweek.

I got the results of my labs yesterday. All was in the normal range (slightly anemic is normal for me). The only results I didn't get were the liver functions.

I got my combo flu shot yesterday. My husband had a cold a few days before, and I started feeling the effects. I have an appt. with the NP today about the tonsil thing anyways. The cold is inconvenient and uncomfortable, but I'm really not worried about it.

I had to stop working September of 08 (I was pretty much run out of my job and went through the EEO complaint process). I tried to work again in December of the same year, but barely made it a month. I'm on SSDI and they found me disabled back to Sept 08.

My husband hasn't been very supportive. I was so happy he was there for me the other night. :)

Thank You and (((HUGS)))
Kay

well I am glad he was there for you the other night!
bizi