Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Okay kids...(I know you all love when I call you that.) Easter is around the corner and as many of you know my family is all in Columbus, Ohio while we are here in Rochester, NY. Part of that family includes my 18 month old nephew whom I haven't seen since January, and of course his parents. And part of that family includes my other nephew, Eric, and my brother-in-law, who on January 24th of this year lost their mother, wife and of course my sister to terminal breast cancer. Furthermore, in addition to Easter we will be celebrating Eric's 13th birthday party. This little guy has been through so much. First losing his mother, and then 2 weeks later he lost his dog to cancer, and then just 3 weeks ago he lost his school counselor (who was helping him greatly with his grief) to her own battle with breast cancer. My three children, and myself have always been close to Eric and he is so looking forward to seeing us all. That being said, the trip is 7 hours each way. As my mother has MS, I know that although she knows I'm not well, I'll feel a lot of responsibility to help out with the family event and keeping the kids entertained. I've always been the pied piper that way. My husband, I'm sure is exhausted as he has been taking care of me and the kids for the past month carrying the weight of my illness and all that comes with it. He feels that this trip will be too much for me, as I'm still not quite back to normal. As you all know best, it's very difficult for me to know right now what type of day I'll have and whether or not I'll take a trip to the ER. I don't like going here in Rochester let alone in Columbus where they don't know what's going on with me. And, if going to the movies with the kids for a few hours is exhausting can you imagine this trip? I'm also battling this secondary UTI and by the end of this week I'll be off of the steroids again...which always leaves room for error.
I've asked my PCP if he thinks its wise to travel right now, and I'm guessing he'll pass that decision off to my NS. So, now I'm asking my PTC friends. What do you think? Do I risk breaking my nephews heart and missing Easter with my family fearful of an attack? Or would I be wise to stay close to home and have him come up and stay with us for awhile when I'm feeling better and we can have a better time? Send a gift in the mail...say hello over video cam...etc?
I really appreciate your input and I'm sure you can understand how difficult this is. But I also know that you guys get this better than anyone else I know. So let me have it...What do you think?
- MM3
I've asked my PCP if he thinks its wise to travel right now, and I'm guessing he'll pass that decision off to my NS. So, now I'm asking my PTC friends. What do you think? Do I risk breaking my nephews heart and missing Easter with my family fearful of an attack? Or would I be wise to stay close to home and have him come up and stay with us for awhile when I'm feeling better and we can have a better time? Send a gift in the mail...say hello over video cam...etc?
I really appreciate your input and I'm sure you can understand how difficult this is. But I also know that you guys get this better than anyone else I know. So let me have it...What do you think?
- MM3
I wish I could answer you (I'm also so sorry for your loss and what your Mom and nephew are going through). But I want you to know it is okay for you to take care of yourself.
As for me, my whole family met last Christmas in Chicago and it broke my heart that I couldn't be with them (my Mom turned 84 in March), but I knew if something happened it would ruin the whole holiday, a Dr. would not know what to do with me, and that I would have a worse relapse. It was hard but I had to take care of myself or I wouldn't be any good to anyone.
That said, see what your NS says. You don't have to feel guilty for taking care of yourself and you had great ideas if you decide to visit another time.
Good luck on your decision.
:) Jazzy
Okay... now some more reality. Monkeymom sometimes overdoes it on days she feels better and crashes afterward. She probably overdoes it on days she doesn't feel so good too. (It's a mom thing, I understand).
Now, I can't speak to the technical side of our condition. Your NS, and our PTC friends, can talk with you about a game plan for what if or what to expect... like knowing what hospital will be nearby, and having a copy of your chart with you or being able to fax it quickly to a Columbus ER... stuff like that.
But, I will answer you with a question (or a series of questions, rather): Can you set boundaries for yourself and stick to them? Can you imagine getting through the long car trip with the kids? Can you take it easy even if you feel good? Voice how you are feeling... do it often... I'm sure your family will understand why Aunt Monkeymom isn't her old self, but could you understand and forgive yourself? Or even forgive yourself if you decide you just can't make it this year? Your family loves you and will support whatever decision you come to.
Good luck!
Family is family. They are more tolerant of the oddball changes thrown to them than the rest of the world as they are family and if they dont see you this time around they will catch you next time. During holidays, there is generally enough other stuff going on that while they may be very disappointed they will get over it. Blood is thicker than water comes to mind and that helps both ways. So I guess that helps support the stay home option.
Anyway, here is my take and I am pushing the flip side of going for it. My glass is always half full (even the wine the last 2 mornings). Other than here, when someone asks me how I am, I always respond with Terrific. I dont think you paid for the extra loads of laundry. You just had a bad day the next day, period. I just had the most wonderful vacation in Buenos Aires, Argentina with my wife to celebrate her 50th (she robbed the cradle as I am only 48.9). There was nothing in the world that would have made me cancel that trip. I had some rough times but I sucked it up and made it good for her because quite frankly at home she does that much more for me. And part of me also said FY to this damn illness. It has already screwed up so much I cannot let it take everything. So I chose to fight. I left prepared (with my personal pharmacy). Your doctors will still only be a phone call away. For me when I am preoccupied whether it is working or jabbering with family I am a lot less likely to dwell on my pain and current grim outlook. So my vote is go for it. If it is not the right choice you can always go home early or just excuse yourself to a comfortable place where you can duke it out. Either way my guess is that your hubby and kids will be thankful of your sacrifice and enjoy the time (as best as they can) even if you are not feeling as good as you hoped to. (But obviously I hope this is not how it goes.)
To go or not to go that is YOUR question. May the force be with you when you make this important decision. I will throw some Rasta vibes your way to sway the powers that be to help make the holidays a nice, fun and memorable time you and your family!
TJ
THere is actually PTC reserch being done in Columbus and Cleveland, OH, so you may actually find better docs if the case happens where you .need care right now.
My local family is irritated because we don't go, but we dont ahve the stuff goin on either, no needs in the family. Last year we did, and I struggled through it, I enjoyed it and crashed and burned many times, but it was almost worth it to hold my newborn nephew, I will miss his first birthday party, but he is local I can see him anytime when I am better.
If you feel you could get others to help with the work, you may go...if not, it might be time to plan to wait til summer.
TJ said that... and I totally agree.
But I also agree with Bax. Think about taking it easy, forcing yourself to-and trying to maybe spread out the responsibilities and tasks that need to be taken on between other people, if possible.
I would go, if it was me, in my current condition-I don't know exactly how you feel-but I would definitely make it known that I can't do it all, and I am going to be as easy on myself as possible and I would keep reminding myself of that, too.
You don't have to pull off anything perfect. Just you showing up should be enough. Maybe having a talk with the kids would get them to help out with themselves and giving the adults a break? Hopefully...
Hopefully things turn out in a way that everyone gets some much needed time with their loved-ones this holiday but safely and healthily, too. =D
Good luck!
So, I would recommend Riverside if you do come here and end up needing EMT.
I don't know anything about the hospitals in that area but Charlotte is also right about the research. Here are the names of the 2 doctors that spoke at last years IHRF conf:
Dr Steven Katz MD
Dr John McGregor MD
Both listed as Ohio State but not what campus/hospital.
Good luck.
TJ
I have always traveled with my condition and it has never bothered me. I will tell you when I originally told Duchess that I was going to spend 15 hours on a plane she almost went balistic. Her condition is much worse and she can tell the difference between hi and low pressure weather headed her way. Me, I drive up and down a mile high mountain frequently with no difference.
Remember planes are pressurized for your confort. As long as you can clear your ears I think you should be ok.
TJ
But, Bax...you nailed it right on the head in your description of my "role" in the family. Were we best friends in a past life perhaps???
I realize that I could get a "note" from my NS to take with me should something go wrong. I am familiar with Riverside, as well as St. Ann's and as you have mentioned I know a good deal of research is being done at OSU. So, I could be in worse places.
Now, I just have to convince my husband. I don't want to make things harder on him. And, you're right, I need to speak with my 3 monkey's. Their 18, 12, and 8...they really could help out more. Furthermore, I'll have to draw some boundaries with the family letting them know that Auntie Khryssy (Yep...real name is Khrystine) may not be her normal self this time around.
But, if there is one thing I learned when we lost my sister...it's that time is precious and nothing is more important than family. So FY PTC...I'm going home! Thank you all for the support. I feel so much better knowing that you guys get it.
Love ya lots!
MM3
The Rasta vibes are flowing and with that I am going radio silent until tomorrow evening.
Cheers!
TJ
I guess we are all diff. because I couldn't even take a bus up a hill without my head feeling like it was going to explode.
I'm glad you came to a decision MM3. I know it will be hard for, but pace yourself and let yourself enjoy your family and friends and not get caught up in the mini multiple tasks of the day (breathe...it's okay to let other people take care of those.
Enjoy and blessings. Jazzy
But at the same time, I'm shocked and sickened that some people live with this condition and have such trouble doing something like travelling!
=(
But anyways,
FY PTC.
;-)