[OhKay]

I'm sorry I've been away so long...

I've had 2 episodes of depression... and the same number of manic episodes.
Damn steroids...
It turns out that all my falls I guess it was a relapse- my first symptoms that showed up on MRI. It revealed that I have relapsing MS- not primary progressive like we thought. I had to go through PT again, and I'm back on monthly infusions of Tysabri.
I have had 3 more episodes of $hitting myself, and have been incontinent of urine. I'm peeing more often, and the last time they bladder scanned me I narrowly escaped being catheterized.
I've been bobbing my head a lot and it's very uncomfortable and embarrassing.

I had lost a grand total of 34 pounds, but have slowly gained back 10 pounds. The doctors gave up finding out the cause long before I gained the weight back. I was so used to seeing my body so thin, I feel like I'm fat when I look in the mirror. I have fat where I never did before before I lost the weight- maybe it's because I have excess skin because of the weight loss and gain?

My sleep cycle is SO OFF. I've been unable to fall asleep until 4 or 5am. and I wake up on average at 2:30pm. I haven't slept tonight because I'm trying to reset my clock.

Now I'm having problems leaving the house now. I'm turning into a hermit. My anxiety is absolutely unbearable. I have to take extra klonopin before going out, but sometimes I don't take it early enough and sometimes it doesn't work. One day I had a really bad anxiety attack to the point that I got a rash over most of my body. My OCD is in full effect, I don't want to get into all that though.

I've had problems with my vision at times- It usually happens when I'm out and if I have to drive, I have to close one eye so I can see where I'm going.It happens at home sometimes too. My MS neuro looked at my optic nerve last time I had an appointment, but she can't see much when she looked. She said it looked fine to her but I should go to the eye doc, but I skipped that because it's anxiety related.

I'm not doing anything- doing nothing but sitting around. I do cook dinner and have been doing some food shopping. I haven't had my hair cut in MONTHS and it is now long enough to put up- more lazyness on my part. I'm getting my haircut today/tomorrow.


Christmas and Christmas eve will be less stressful this year...
My psychologist is away now and won't be back until January. I think I need to call and see my back up because I definitely need an appointment before then. My shrink just doubled my lamictal (also on 450 twice a day) for the depression, but it's not doing the trick. I'm really apposed to antidepressants because they cause mania.

I'm sorry I've been MIA. I always have so much psych and medical stuff going on. I hope you're all well- please excuse me for not catching up on other threads.

Love,
Kat

[Mari]

Dear Kat,

I imagine that the weight loss and then gain is unsettling. It is good that you gained some of it back . . . even if looking in the mirror is somewhat confusing.

I went to sleep at 4 or 5 for years and it worked in a way. All my efforts to move my body clocked pretty much failed until August this year when work hours and some other things changed that sleep time by a few hours. I can go to bed at 3 or 4 some nights now.
I think it might not be all that important about WHEN you sleep as long as you do sleep. Of course, one of the main disadvantages is that it is hard to get to dr appointments during what would normally be sleep time.

I do hope that you get an appointment with your back up psychologist. I think many of us with bipolar are uncomfortable when our mental health teams are not available.

I am not on an antidepressant but the Gabapentin I have been taking helps a little bit with anxiety and depression.

I hope your haircut today helps you feel a little better.

M

[mymorgy]

i am so sorry that things are going so hard for you. i am glad you gained back the ten pounds. it is a great sign that you are going for a haircut. you still have a fighting spirit.
love
bobby

[bizi]

oh kay, thank you for checking in with us. you have been thru the wringer and back. I am sorry for the recurring ms, is that a good thing that it is that and not the other?
I don't know anything about ms.
IT sounds like you face such challenges....I am hoping you let them give you a good hair wash, love to have my hair washed, a good scalp massage feels great.
hugs to you today
(((((HUGS)))))
bizi

[Dmom3005]

oh kay, I've been worried about you. So its so nice to see you.

I'm so glad you checked in. And you can do all the checking in you need,
and reading right here. Its fine not to read the other threads. We all understand.

And I'm sure the newbies will understand too. And they will introduce themselves to you. You have been through so much. And were just so glad you stopped by to let us know how your doing.

We hope you can stop by more often again. That way maybe we can help with all the things we are good at.

Donna

[butterfly11]

Hi Kat. I haven't had a chance to "meet" you yet and wanted to say hi! I am so sorry for all that you are going through. You are one tough cookie! I have bipolar disorder but am generally healthy physically. I cannot imagine having a physical illness on top of it. I admire you. My friend's husband has MS and PT has helped him. This is the second time he is able to work back from wheelchair to walker and is on a cane now. Like bizi, I don't know much about MS or why it gets better than worse than better. I'm sorry you're having to go through all this and pray it gets better.

[OhKay]

Thanks everyone!

My husband and I put up our tree last night- we like to have one. Some couples just put up a tree for the kids, but it seems like ours is really for our 3 cats. At least the fat cat (I can say that because he's 26lbs) just lays on the tree skirt. The princess jumps up and tries to knock off as many ornaments as she can. The little one is the worst! When he's not climbing up the middle knocking down as many ornaments as he can, he's running in circles under the tree skirt. I have a lot of nice ornaments, but they don't go on the tree anymore. I bought a bunch of cheapie stuff last year or the year before so nothing else of value gets destroyed, but we'll still be finding those around the house in July.

So far, I have forgone the pdoc appt. I think I'm dealing with the holidays better than I did last year. I hate seeing someone else (even if I've seen them before) because there's so much catch up... the MS, other health issues, trajectory of bipolar disorder, and very complicated family dynamics. There's too much time spent catching up, leaving little time to address why I'm there.

Mari, Staying up all night didn't help. At least I woke up at noon today tho. I take 600mg of gabapentin 3 times a day for MS-related symptoms. I wish it would help me with my anxiety... I take enough of it.

Bobby, I went from 155lbs down to 123 over the course of a year. It happened once before when I was 21- I didn't start out at 155lb, but went down to 115 (I'm 5'9"). They didn't figure out what was wrong then either.

Bizi, I did get a good scalp massage! I'm glad I got my haircut, but I have to blow dry it. I do miss the days when I could get out of the shower and throw it up in a ponytail.
I can't really get into the ins and outs of MS, but both relapsing and progressive MS suck. With the relapsing kind, sx can come on quickly and that kinda scares me. IMHO, relapsing pts who have very rapid and severe episodes have it the worst.
Since I guess I've been relapsing all along, I guess the worst episode I have had was with my gait, but it wasn't an overnight change. And the worst changes have been in my cognition.

Hi Donna! It's nice to "see" you again, too. I'm going to try to check in more often. I do miss you all!

It's nice to meet you Butterfly! I'm sorry that your husband's friend has MS, too. PT has helped me a lot: trying to help with pain, strength, and mechanics. I have a Canadian (forearm) crutch now so I'm safer. It has helped, but it's a pain in the *****. I don't use anything at home- I take tiny steps and hang on to furniture.

K

[butterfly11]

Hi K - I'm sure your cats are glad you got your tree up! All those shiny hanging ornaments and twinkling lights, I imagine it's cat heaven.

I saw my friend and her husband at Thanksgiving. He is doing what you describe. As he came down the hallway he just pressed his hands against the walls as he walked, then used different objects for support as he walked by them. I didn't understand, but do now. Thanks for helping me understand that canes & crutches stink.

A scalp massage, wow, that sounds so relaxing.

I hope you continue to improve.

Editing to say, that came out wrong, duh, I know canes & crutches must stink. I meant that I didn't know they were a hassle to use. I had wondered why he wasn't using something that could help him, now I understand what he was doing was probably easier for him, not harder like I thought. This is coming out all wrong. I'm sorry!

[waves]

Hello dear Kay,

i'm glad you sorted out what sort of MS you have that i recall was a point of contention and a mystery before. even if as you say there is good and bad to either kind, and of course the individual sx vary ... with the individual.

also glad you got some weight back on you and got that hair cut.

there's no need to be sorry wrt us... we welcome you whenever you can and would like to pop in and share, or lurk. whatever works for you, whenever it works. i care about you and i know others here do too, so we like to hear from you, but we understand the difficulties in that. we share some difficulties and not others, but regardless of specifics, all of us here appreciate about not being able to do all that one wants, or feels one oughta have a right to do. and even times when one is just too dang out of it to do anything.

i just LOOOOOVVED the story about your tree and the cats. i so miss having a cat but we can't. my parents dont' want to deal with decorations or a tree. honestly space would be a problem for us. but i miss having some decorations. and when i am not depressed at Christmas i usually make sure there are some small things on display. my mood has just "turned' to the upside... so i am going to make sure our house looks good, and i have stocked us with some delicacies too... perhaps a little overboard there but, once a year, hey!

I hope you and hubby enjoy Christmas and that this coming year offers you a good spell of remission along with bipolar stability, and with that an increased ability to enjoy your beautiful self, life, and the world.

sending love and warm wishes to you. :circlellove:

~ waves ~

[bizi]

merry christmas kay.
(((((HUGS)))))
bizi
gotta love our cats!