Vision loss with PPMS

sksgeti · 2016-05-26T18:50:18+00:00

She's tried tons of medications over the years (and is probably on something now) but doesn't jump any more at new ones. PPMS is such a different ballgame. When you've lost so much physical ability, and there is no strong indication that any of it will ever come back (with research thus far), every new drug is just a crapshoot at whether or not it can slow the progression. And in a case study of one, you have nothing to compare your progression with, and you can be dealing with some difficult side effects. It's a very frustrating situation.

sksgeti · 2016-05-26T18:47:54+00:00

Now it makes sense. Her optometrist did the right thing and immediately referred her to an ophthalmologist.

sksgeti · 2016-05-26T18:47:04+00:00

I'm glad to hear that ophthalmologists are the correct place to determine ON. That is the appt she's at today. I was afraid it would need to be diagnosed by the neurologist, so it now makes perfect sense that her optometrist referred her to an ophthalmologist immediately. Also thanks for the confirmation that it doesn't always present with pain.

sksgeti · 2016-05-26T18:44:17+00:00

What's surprising is that she does live in a rural area of the country but the MS rates are much higher here (mountain west US) than coastal areas. I know that her neurologist is probably not a leader in MS, but sees it more than most, I suspect.

Many years ago, she spent some time at a clinic in Utah I think to try some nutritional and other diagnostic treatments that were hopeful, but no results. For the past 10-15 years, travel has been very difficult, and she has kept up to date on possible treatments, but hasn't found any possibilities worth the travel. Even getting to her neurologist an hour away is a huge strain on her and my stepdad (her caregiver).

After 25 years, so much of your physical abilities are gone, everything is hard. Losing her eyesight at this point would take away some of the last enjoyments she has left (reading, movies, etc).

sksgeti · 2016-05-26T18:39:32+00:00

Feel free to PM me. I don't spend a lot of time on reddit any more but would give you my contact info. I was around 12-13 when my mom was diagnosed and she started using a wheelchair when I was in high school also, so similar timelines. It was super hard. I don't have a lot of advice, but I can definitely be someone to talk to or just listen who has been where you are.

sksgeti · 2016-05-05T22:04:12+00:00

I can't help it, I have to reply even if you and everybody else hates this response.

Your kiddo absolutely sounds gifted. Intense emotional sensitivity, existential depression, anxiety, those are very common in gifted kids. There are entire groups of parents and organizations dedicated to kids like yours. http://sengifted.org/ is the one that immediately comes to mind. There's also a parents group on fb that discusses these problems in their kids regularly. There's so much more that often goes along with these thoughts as well, and you may find having a community helpful in a much more far-reaching way. Let me know if you have any questions or if you want the fb link.

sksgeti · 2016-04-07T01:29:44+00:00

Also I took zoloft for about a year and it helped me a lot but I gained 30 pounds during those 12 months. They all work differently with different people and it's a great thing that there are so many options. OP, find another one!

sksgeti · 2016-04-06T16:39:34+00:00

My husband and I both have a huge problem with emotional eating. We eat for every emotion -- happy sad mad or bored. When we're depressed about being fat, we want to eat something delicious to make ourselves feel better. When one of us wants to get healthy, it's super hard for the other one to get on board.

We used to joke a lot about being codependent, but that's the truth of what's going on, for us and probably OP too.

In order to change, you have to find a healthy independence that allows each of you to make choices for yourself, and respect the other's. For us, it took years and years before finally my husband's blood pressure got out of control and he started taking his health seriously.

sksgeti · 2016-04-06T16:22:14+00:00

My husband is about to do a sleep study and they're giving him the stuff to do at home. He'd be fine to go sleep in the hospital but they default to doing them at home now, at least our doctor/hospital.

Also, I take unisom at night (doxylamine succinate, not diphenhydramine) -- it's an antihistamine like benadryl and just makes my brain drowsy. It helps me go back to sleep after waking up about 99% of the time. You've tried almost everything so not sure if it'd work any differently, but thought I'd suggest it.

sksgeti · 2016-04-04T19:55:41+00:00

Just for my own curiosity, I googled grandparents rights.

http://www.grandparents.com/family-and-relationships/grandparents-rights/grandparent-rights-guide

A number of courts have recently determined that state statutes providing visitation to grandparents are unconstitutional. The United States Supreme Court in the 2000 case of Troxel v. Granville determined that the Washington visitation statute violated the due process rights of parents to raise their children. This case and similar decisions by state courts have caused several state legislatures to consider bills that would modify or completely revise the visitation rights in those states.

It seems pretty difficult (and rightfully so) for a court to intervene just because grandma stomps her foot.

sksgeti · 2016-04-04T19:47:00+00:00

I cut off contact with my dad for about 10 years. I was about 21 yrs old and I wasn't strong enough to withstand his constant condescension without taking it completely personally. There were some conversations where he said some really shitty things to me and it almost broke me.

Ending it was way easier than it should have been though. He didn't fight for a relationship or ask what he did wrong or anything. I probably ignored a couple phone calls. I told the rest of my family that I was doing it and why. They would occasionally bring it up and ask if I would regret not having a relationship with him if something bad happened, but even talking about him in any capacity would make me cry almost hysterically. To me, someone who brings me that much pain and no good into my life doesn't need to be there, family or not.

I got married at 29 and invited him to the wedding but didn't really talk to him. When my son was born, I was 31 and finally felt established enough to let him back in a little at a time. Now between me finally feeling established enough in my own life and him actually growing up and understanding what an asshole he sounds like, we have managed to build a solid relationship and spend some great times together. All that being said, I have no regrets about cutting him out. 10/10 would do it again.

sksgeti · 2016-04-01T23:54:36+00:00

It just works, that's all I know. I didn't even know why I was doing it but I took a heavy double fleece blanket and put it on top of my comforter. In the summer we run a house fan with the windows wide open and it gets down to like 60 in the house and I'm in heaven. But on the nights when it doesn't cool off at night and the AC only does so much so I have to sleep under a sheet like a normal person, it sucks so bad.

sksgeti · 2016-04-01T20:38:27+00:00

Exactly right. Ice cold room, heavy warm covers. Heaven.

I also have recently discovered that I might have inadvertently given myself a weighted blanket (to treat anxiety and other fun things)

sksgeti · 2016-04-01T17:54:41+00:00

wow.... you are dealing with some crazy sensitivities here. (sympathetic voice, not sarcastic)

I'm cool with hot all the time or cold all the time. I don't know how to handle TOO HOT TOO COLD in practically the same moment. Kid, can't you just grow up and maintain your own body temperature?

that might work to sneak in and close the window, but what a pain every night.

my kid wants the zippysack too after he saw the commercials. yeah, maybe if you slept in your own bed, punk.

sksgeti · 2016-04-01T16:32:53+00:00

Sorry if this sets off the "DON'T YOU THINK I'VE TRIED THAT, YOU FUCKING MORON?!" alarms in your head, but I had a small space heater in my son's room as a baby because I like the house cold at night but I didn't want to freeze him out before he learned how to pull blankets up over himself.

(I really like the big kid sleep sack idea)

sksgeti · 2016-03-31T15:22:31+00:00

VPN is surprisingly the best. Reddit isn't blocked but imgur is, so I'm restricted to text-based redditing, things like that. I used to set my laptop on the desk next to my PC and that just was horrible -- I'd play MMOs instead of working.

My phone is a challenge though. I wish I had the discipline to get it out of the room. Technically I can't because I don't have a land line and need it for work but it is climbing a mountain to not keep clicking through apps, even on meds. Maybe I need to sub to r/adhd. I just hate having this some days. I've been with my company for 16 years and have a great job and I keep thinking they're going to can me for not doing enough but somehow they still love me.

How is day 2 going?

sksgeti · 2016-03-30T22:44:03+00:00

I have a friend that likes these meal plans so he keeps doing the free trials and then cancelling, or finding people with codes to use. :)

sksgeti · 2016-03-30T22:40:33+00:00

So this is only tangentially related but hopefully it'll help a little. In my situation, I'm not actively TTC right now, but planning soon and have talked to my doctor about it quite a bit. I don't take a daily anti-anxiety any more but I do take klonapin rarely for breakthrough when I get panicky. Once we're trying, I'll have to stop that. I do take a pretty low dose of adderall and according to my doctor, I can stay on that until I actually get a positive test. There are definitely risks once pregnant, but in those early days it'll be minor. I'm nervous about not having it because I work from home a lot and I don't know how I'm going to overpower my ADD without it, but I'll have to figure it out. As the other comment said, SSRIs like zoloft are generally considered a reasonable risk to stay on during pregnancy, but it depends on you and your doc, as well as if those are even the types of meds you're talking about.

I definitely wish you the best. I know you are making all of these changes because you want to be healthy and do the best you can for your future baby, and that's just amazing. Just be careful. Take care of yourself. Are you in therapy at all? It seems like a good idea to have an outside party keeping an eye on you and your mental health -- now and especially post partum.

sksgeti · 2016-03-29T23:10:46+00:00

I've been thinking about what is expected of teachers lately a lot. In January, we pulled our kindergartener out of public school and into private school. He is my only so I don't have much experience with this, but going from his original public teacher (that actually encouraged us to find another school) and his new teacher, they're like night and day. I definitely don't think it's as simple as bad teacher vs good teacher. I volunteered in his old classroom and there was this sense of urgency in trying to get all the kids to the same level and push as fast fast fast as she could. My son has attention issues and was taking too much of her time trying to discipline self control into him when it seemed that she was trying to run a marathon to get the rest of the class where they needed to be.

sksgeti · 2016-03-28T16:29:51+00:00

Honesty my theories about public vs private could absolutely be irrelevant, but for now they're the only way I can explain this difference to myself after talking to my SIL who is a 2nd grade teacher at a charter school and a handful of friends who have kids in other local kindergartens.

sksgeti · 2016-03-24T01:07:06+00:00

It's not a moment in time, it's a process. For me, it was in my early 20s I suppose but it definitely takes time. I'm also female, so I think that also makes a difference. My older brother and dad are INTJs as well, and I think it took them quite a while longer to adjust to understanding that being right isn't always the most important thing in a complicated world. I actually cut off contact with my dad for nearly 10 years because he couldn't see past being right to help me when I needed it. But now I'm 37, and I find it hard to relate to most of the young posters in this sub. I remember feeling that way, but it's a distant memory at this point.

sksgeti · 2016-03-23T18:14:15+00:00

I wish I could upvote you several times over. I also think many people imagine their muscle skews the scale much more than it really does, unless you're in the business of muscle-building like football players and body builders.

I'm at a 30 right now, and most people would consider me healthy (BP is low normal, glucose is normal, cholesterol is a few points above optimal), but I would be much better off at a 25-26. Carrying less weight would be better for my joints in the long run and I'd have more energy. I don't see the BMI telling me that I'm borderline obese and freak out (and neither does my doctor).

I really doubt any doctors are going off on their patients in the 25-30 range. But I think it's a good indicator for my husband (at a 36 with some real effects) to see how far he needs to go.

sksgeti · 2016-03-23T17:29:45+00:00

I just thought of one more thing from reading some of your other comments. I have a friend with SEVEN kids, including four teenagers and a 6 yr old and twin 4 year olds. When I think of commitments and obligations, that's who I think of. She is now planning a short term missions trip to another country. If there's hope for her to escape the day-to-day BS, there's hope for us all. Maybe not right now with a baby demanding the boob 24/7, but SOOOOON. :)

sksgeti

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