Bizi, my PCP referred me to a general surgeon for a possible biopsy of one or more of the swollen lymph nodes. Even tho they are wide-spread, I doubt he will think one is warranted because they're really not that big. The appointment is on August 14th. If my lymph nodes are still swollen, I will go, but I consider it a waste of my time.


I have to find a way to get through grocery shopping today, but I've yet to shower or put my list together :o

My system of waiting until I feel like I'll be okay enough to get in the shower/go out (unless I absolutely have to) isn't working out well for me right now because if I go out later in the day, the heat and humidity are oppressive. I can't win.
I think I may be better off going out earlier in the day because being out in the heat may be just as dangerous as not waiting to go out.

I have to take mag. citrate tonight. I can't put it off any longer. I know how nauseous it will make me, and I know it will probably make me throw up, but I have to do it. I will have to drink a bottle of Gatorade this evening, and another one tomorrow morning, so I don't get dehydrated and pass out :(

I think I am depressed, or am heading in that direction. I'm always in pain, I'm always exhausted, and I feel miserable most of the time, so my quality of life right now is pretty f- poor. I've been struggling with the lightheadedness and dizziness for months now, and nobody can tell me why, never mind treat me for it, so I'm starting to feel hopeless/helpless. I have no idea what to make of the swollen lymph nodes. I don't know if they're even related to my other sx. And all of this s- is standing in the way of me getting the colorectal surgery I need in order to help me with my BR struggles, which are a HUGE issue for me.

There is a problem if I am having a mood shift tho... I really don't think making any med increases or tacking on any new meds right now is a good idea. I don't think if I could tolerate any sedation or side effects, even if they were temporary. I see my pdoc on the 1st...

sending huge hugs and prayers
love
bobby

oh kay, am sorry for your mood shift....
keep posting, know that we love you.

Is there any way to make the mag citrate more tolerable???
are there different flavors?
could you mix it with juice?
I again I am sorry you are suffering.
Be safe and promise you won't hurt yourself.
((((((HUGS))))))
bizi

Nobody said anything about hurting oneself

I am sorry that i said that...you said your mood was starting to shift.
(((((HUGS)))))
bizi

Kay,

I hope that things start working better for you.


May your Saturday go well.


M

Thank you, ladies :grouphug:

A mood shift just means having an episode of hypo/mania or depression. That doesn't mean someone has/will have s/s thoughts, or that they will act on them if they do. But if I started to have those thoughts, I promise I would seek the proper help immediately because of my history (prior s/s attempt), and I would would make the necessary med changes regardless of the side effects.

I used to have some form of s/s ideation regularly for many years while I was on lithium, but never acted on them (I was off meds when I did). I haven't had that problem on Seroquel. My danger zone tends to be mania, dysphoric/agitated mania in particular.


There are different flavors of mag. citrate. The CVS brand grape and cherry are the best/most tolerable, but it's still mag. citrate, and you can't get rid of that disgusting taste no matter what you do because it's so over-powering. I can get it down straight up by drinking it cold with a straw. Even 2 bottles of it isn't a lot of liquid to drink, but for some reason, it's really filling.

Anyway, I chickened out and didn't take it last night, but I went to the BR on my own this morning. It's not nearly enough, but it's something.

Yesterday I checked my PCP's patient portal to see if there were any messages for me that I hadn't gotten an email notification about (which has been happening lately). There was one about the brain MRI I had done... apparently he doesn't understand how to read radiologists' reports for MS pts LOL! Anyway, he wanted to refer me to a MS clinic in Boston. I just wrote back that I had already discussed the MRI results with my current neurologist, and was happy with the care I was receiving. I would rather have no neurologist than go into Boston again (I didn't write that last part tho).

Thank you for your clarifying.
have a good weekend.
(((((HUGS)))))
bizi

Also sounds like he forgot you have an neurologist that would read the
report for you and make the answers known.

The pcp I believe should have gotten the answers from him instead
of trying to send you to someone else.

Its just the fact he isn't listening or looking in your records to see
who all your doctors are. If he was he would have known.

To me it sounds like he has no idea what kind of doctor you need
to figure out what is wrong with you. Sounds like you need
an internist.

Donna :hug::grouphug:

That is a very good suggestion donna.
bizi

Sending lots of good thoughts for you, Kay.


The BR issues can freak me out sometimes too.

Magnesium stopped working for me.
Of course ice cream or nutella or anything with fat seems to work until they don't.
++++++++++
Prune juice worked well recently.
I have found that prunes work for now. I take 6 a day & drink water.

Lots of good energy being sent your way.
:Grin-Nod:


M

I found out a lot of chocolate really works

Chocolate works great!:):):)

Thinking about you, Kay.


Hope things are o.k. Sending good thoughts.:):):)



M

kay, I hope you had a good weekend.
((((HUGS))))
bizi

Chiming in with all others. Hoping all went great this weekend.

Donna :hug::grouphug:

Thank you ladies (((HUGS)))

Donna, you are right.

He should have known that I have a neurologist because I have MS, but if he was unsure, he could have easily found out that I do, who he is, and given him a call/sent him a note.

Instead, he thought he knew better, and made a WHOPPER of a mistake...

In short: The radiologist compared my recent MRI with the one I had back in February of this year and found no significant changes (which is good, and why I take Tysabri). But he mentioned that there were no significant changes to the two huge lesions I've had since 2008 (which is where my PCP got confused).

He came to the utterly ridiculous conclusion that there were no significant changes AT ALL since my diagnosis in 2008, so he was questioning my diagnosis and wanted me to be re-evaluated in Boston...
So the arrogant SOB must think that all the doctors I've seen over the last 10yrs (including 2 at prominent MS centers in Boston) must be incompetent, and I must be bat s- crazy :rolleyes:
So, I sent another message through the patient portal saying that *I think* he read the radiology report incorrectly, explained what it actually said, and suggested he contact my neurologist if he has any questions/concerns.
I can't wait to see what kind of reply I get... if I even get one, but I think I am owed an apology.

Since he couldn't take the time to properly read the radiology report, somehow I doubt he will read my nephrologist's notes carefully enough to catch that my BP was 102/33 in his office.


As far as the rest of it, the practice is too busy. They have taken on more patients than they can properly care for...
I think the main problem is that I've never even been properly examined, and nobody has taken the time to sit down and actually listen to everything that's been going on, and ask me relevant questions.
I've seen the NP two or three times, but my PCP is booked until November, so I've been relying on messaging him/his RN, and obviously that's not working out very well for me.
I would like to make a change, but I need continuity of care because of all the referrals I need for specialists. I will see how the appointment with the surgeon goes, and will decide where to go from there.

In the past, my pdoc has been very helpful with advice in handling some of these types of situations, so I look forward to seeing her on Wednesday...

sorry for the mess up.
will see if he responds to your portal post.
yes you need him for your referrals.
unfortunately....
bizi

I got a message back saying that my PCP had "read my note" and wanted to know what my neurologist recommended...
I wrote back that he had no light to shed on my current situation, except he mentioned that I'm on a lot of medications. And as far as my MS in general, he wants me to continue with my Tysabri treatments. I said that I was doing pool PT because of a relapse several months ago, but missed 2 out of the last 3 sessions because of dizziness/lightheadedness, and was unsure if I would continue because my BP in the nephrologist's office was so low, which scared me.

I just finished a 24 hour urine for my nephrologist, and I have to send a sample back to a private lab via FedEx. There's a spout on the collection container so you can empty some urine into the vial, but it wouldn't close back up on me, and I got pee all over the BR floor. Not a great way to start the day, especially since I have OCD.

Tomorrow I have a Tysabri infusion at 8am, followed by a pdoc appointment at 11... I'm going to be run ragged, but I had no choice but to schedule the appointments or the same day.

I'm doing okay, but I may be MIA for a little while. I will be busy, which means I'll probably need more time for myself. I will check my PM's in case anyone wants/needs me.

I am sorry about the urine sample all over the floor.You have a busy day ahead of you....
We will be right here when you get a break.
bizi

Kay
You are one strong woman. And I'm glad your pcp asked what the
neurologist said. Shows he or someone read the things you wrote
back.

Donna :hug::grouphug:

Kay,

Good luck with the two appts today.

=-=-
I hope that someone helps you with the BP.

Let the PT make some
adjustments so that you can benefit from the PT AND be safe in the pool.


M

I agree with Mari about the PT making adjustments so you
are safe in the pool. They should be able to do that.

Good luck with your appointments today.

Donna :hug::grouphug:

how was your infusion? Did you get to see your pdoc?
how are you doing today?
((((HUGS))))
bizi

I already have to hold onto the side of the pool when I do my PT exercises. I have been symptomatic while in the water, and when it's happened, I have just kinda put my arms over the side and taken a break (without saying why). The pool PT understands very well that I have good days and bad days, and doesn't push me, but knows I always make my best effort. I have definitely made gains tho. I have a regular evaluation on Friday, so I'll discuss my concerns with the other PT then, and see what she has to say.

I got no response from my PCP to the message I sent.
I sent my update to my gastro via his patient portal since his medical assistant has trouble returning phone calls. No response from his office yet either.

When I went to get my Tysabri infusion yesterday, I got the slow nurse, who left me waiting for 1/2hr before she took me into the infusion room. I made sure to ask her if she could get me out of there in 2 hrs at the latest before she ordered the med from the pharmacy. I was freed at the 11th hour, so I managed to make it to my pdoc appointment by the skin of my teeth.

I filled my pdoc in on everything that has been going on...

She talked about adding an adjunct med to help me out, or a making a med change (from Seroquel to something else) because so many doctors have talked about the meds I'm on, but both of those options would come with the risk of side effects that could complicate my medical problems, or land me in the nut house because I'm so brittle, so we dismissed those ideas.

Even adjusting the meds I'm already on is a problem. I'm maxed out on my other meds, so we've been moving the dose of gabapentin up and down as needed, but it comes with the risk of sedation, and she's worried it may make me more susceptible to passing out. I'm taking 400mg of it right now. She wrote a script for 1-2 100mg pills as tolerated (along with the 400's, which I take it at night).
I would like to wait until Monday to try adding anything because I have nothing to do next week, but I think I need the extra help now.
I see her in a month.

Yesterday was such a long day, I was F- EXHAUSTED when I came home. I took a 4hr nap, and woke up feeling like total crap. I can't make double appointments like that again. Something will just have to wait next time.

I'm doing okay. Tired as usual.

(((((HUGS and love ))))))
bizi

Thank you, Bizi. Love you lots (((HUGS)))

I ran a few errands yesterday. By the time I went out it was almost 90 degrees... too hot for me to be running around, but when I decide I'm going to do something, I'm going to do it.

The bath mat that goes around the toilet got pee on it when I was trying to get that urine sample, so it was "tainted," and I had to go buy another one. I went to BBB, where I bought the set, to get another one that matched. I had a $10 off coupon, so it worked out perfectly. For those of you who remember me doing this before... I know I'm ridiculous.

I also bought cigarettes and went to Staples to pick a few things up.
But when I went to pick up my prescriptions, they weren't there. My pdoc sent them to my old pharmacy. They're controlled substances (Klonopin and gabapentin), and they can't be transferred, so I have to head over there today to pick them up.

I have the PT reevaluation this morning, then I plan on going to buy more medical MJ, and I have to go grocery shopping. So, I'm not happy having to add something else to my to-do list.

I also didn't get to start trying the extra 100mg of gabapentin last night...

I'm BS at Corey...
He started drinking as soon as he got home around 2:30pm yesterday, and he was totally s- faced by the time I got up from my nap. He must have just been pounding the beers cuz the trash can was FULL of the empties.
I was about halfway through making dinner when he informed me that he wouldn't be eating. Then around 7, he said he was going to bed...
But he didn't make it there before throwing up in the sink, which he was too drunk to even rinse out. I was just thrilled about that.
Before he had a chance to fall asleep, I went in the bedroom to remind him to set his alarms, which he did, so he would wake up in time for work...
He didn't, and he woke up freaking out and swearing.

I finished making dinner, but I made thin pork chops from the supermarket. They will dry out a lot when I try to reheat them, so I'll probably end up having to throw them out.

I hate cleaning up throw up....:(maybe you could save the pork chops by cutting them in little pieces and make a pasta dish with them???
I am not much of a cook but if you add enough cheese anything is edible!
I wish your life was easier for you.
You don't need his BS right now. Is he aware of all of the stress that you are under??
(((((HUGS))))
bizi

Kay
Sending you some hugs. I can't say what to do with the pork chops
i have no clue.

I hope the traveling around to get the medicines and things is good.

Donna :hug::grouphug:

Kay,


Bizi has a good idea for the pork chops.

They also could be reheated with steam --> on low heat with some water in the
pan and perhaps a lid on top. The microwave will not usually dry them out
either.


I could see your wanting to toss them and start over again.


M

Thank you for the hugs :grouphug:

Believe it or not, I don't eat cheese at all :eek:
The pork chops only cost between $2-3, so I decided it wasn't worth the effort of trying to save them, only to have them turn out hard and dry in the end. They were just too thin to do anything with.

When Corey came home to bring in the groceries, he also brought in a 30pk of beer. I told him to put it in the fridge first, so I could work around it when I put the rest of the groceries away. He had a temper tantrum because things weren't going as smoothly as he wanted them to, and when I told him to calm down, he snapped at me, and told me that he had the right to react the way he wanted to. I told him that I wasn't going to put up with any of his s- after his behavior the night before. That shut him up.

He's aware of the stress that I'm under, but he's not cutting me any slack.
I don't really talk about my mental health issues with him, except to let him know something is going on. I'll let him know that I need/needed a med adjustment, or maybe say I'm "off", or something to that effect, but usually that's all. But if his behavior (usually his temper) is really impacting me in a negative way, I will tell him that it's really important that he not do this or that, and he will usually try not to do whatever it is.

I took the extra 100mg of gabapentin for the first time last night. I thought it would be hard to wake up this morning, and I would feel really sedated, but nope. I woke up at 5am after only 5 1/2hrs sleep (unusual for me). I'm tired, but I didn't get enough sleep, so I can't say how sedating it was, but I think it was activating. I'm higher and less dysphoric. I will give it another shot tonight and see what happens because I've only taken a total of 500mg once this time around. But if I feel like it's activating again, I'll obviously have to stop taking it.

We have run out of patience with our upstairs neighbors. They're really loud, obnoxious, and inconsiderate a/h's. In addition to the loud get togethers, we've had beer cans, potting soil, human hair, cigarette butts, and water raining down on our deck. The "lady" who lives upstairs has said many, many times to tell her if we have a problem, and when I have done so, all she does is get angry, and b- to my next door neighbor, who tells her she is the one in the wrong.

They put on quite a performance Thursday night. They're very lucky that Corey was asleep. Even with the window closed and the AC on, they were VERY loud, and there was a lot of banging going on until at least 11:30pm, which is around the time when I passed out on the couch. I decided not to go out to smoke cigarettes anymore after they got really rowdy because Corey was asleep and I didn't want to go out side by myself. I heard my next door neighbor open her door, I think hoping I would open mine to talk about it, but I didn't poke my head out because I wanted to stay out of it...
I have been carefully avoiding them because I'm not quite myself, and I don't know what would come out of my mouth right now if provoked. I didn't call the office either, but I should have. I think somebody else did tho cuz they had at least one person over last night, who is usually loud, but they had their window closed, and they were fairly quiet.
We are no longer going to put up with their s-, and since the direct approach clearly isn't working, we are going to take our complaints to the office now...
But now we're going to record the racket from inside and outside our apartment, so the office staff knows how bad their behavior is.

I'm getting my nails done this morning. It's been 3 weeks, and they still look great. I think I will start going every 3 weeks vs. 2 from now on.

I hope you get a good nap in today.
((((HUGS))))
bizi

I got my nails done on Saturday, and they came out beautifully as usual. And it's always nice to see Judy :)

I was out on my deck Saturday night when I overheard the "husband" from upstairs say that he took out his "guns, knife, scissors, and his roach clips that aren't sharp like knives... on Thursday night." THAT'S JUST F- CRAZY...
Thursday night was the night that they were out of control. I'm not positive it was him talking, but I'm pretty damn sure. What if I had gone up and knocked on their door that night?
I called the leasing office this morning. The assistant manager was very nice about the whole situation, but I don't know how she's going to deal with it. It may end up causing us more trouble, but I thought I had to call. I told her I wasn't well (which she already knows), and don't need to be dealing with all this BS.

They're so bad, Corey's been talking about the possibility of moving when the weather cools off. I didn't tell the office manager that tho. I like our apartment, and don't plan on moving anywhere until I have to because I can't take the stairs anymore because packing up, etc to move here was really hard on me. And where would we move to? We smoke and have 3 cats. Finding this place was hard enough.

The funny thing is, the b- upstairs just won $10K on a scratch ticket. Good things happen to the nicest people, don't they? Anyway, I think maybe they were celebrating Thursday night because that's when she won the money. Corey thinks it's great because now THEY can afford to move now... but I'm sure they won't.

Who knows maybe they will move????
I hate loud neighbors, and barking dogs. we sleep with the fan on to drown out some of the noises.
bizi
how are you doing?

Kay,

I understand your frustration with noisy neighbors.


It's difficult because we expect our homes to be places of refuge --
with peace and quiet.



M

Kay
I'd remind him of all the work it takes to move. And that this time
it would be him doing the work. I think you might maybe help
him find a place. But he can then do all the packing and
things like moving the stuff.

I would help with my clothes and anything he shouldn't break.
And the kitties.

But that would be it.

Donna :grouphug:

I took my pills pretty late last night, including the extra 100mg of gabapentin (total of 500mg). I woke up all f- ed up about 4 hours after... I mean REALLY f- ed up. Some of it may have been because the effects of my night meds (which should have put me out for longer than that) hadn't worn off yet, but I am still f- ed up HOURS later...

I feel sedated and totally out of it, but I can't sit still. I just realized that I'm experiencing psychomotor agitation. I'm a total f- ing mess...

The first time I added on the extra 100mg of gabapentin, I only got 5-5 1/2hrs sleep, felt tired and/or sedated when I got up, but also felt like it was activating. I felt fine the next day tho.

I hope that's the case tomorrow. But somehow I doubt it because of the psychomotor agitation. I won't be taking any extra gabapentin again, but I want to see how I'm doing tomorrow before contacting my pdoc. I will make sure I take my pills on time tonight so I don't complicate matters, and can see if I'm manic or not. Because right now it feels like I'm manic.

:eek:
Kay,

That sounds rough.

I have found experimenting with Gabapentin can yield good results. Other times bad. It's weird.

I hope that you are o.k., and if not, that the pdoc can help you.


M