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Am back in town.

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Some people have asked how I was, thanks for inquiring.


I was at NYU for 11 days. The lumbar puncture seemed to go okay but I was so sick afterwards, I was ticking, movement disorder, so fatigued I couldn't move. Days later they diagnosed me with a leak. Then I had to have a blood patch which was literally the most painful thing I've ever endured, but the physicians who helped with both the LP and blood patch were superb so I don't know how things went wrong, it feels like I'm cursed.


I did 4 rounds of ivig, couldn't take any more just mainly b/c of my ocd, and I didn't want to be in the hospital any longer. Had to stay in nyc longer for blood patch. I really don't want to think about that aspect ever again.


It's been a week since last infusion and I don't really feel any different. I think my bladder is doing better but that's all. I haven't slept in 2 days though I did seem to sleep okay in the hospital, ivig made me really tired and it was easy to fall asleep.


Insurance cancelled doing local ivig, so we are going through appeals.


I honestly feel such a depression and pain inside, I get this way when haven't slept. I googled some of my old friends and they have moved on with life have great things happening, my life stopped at 18 and that was 10 years ago. It's almost unbearable to think about losing everything, everything, and seems like there isn't any hope on the horizon. I've been trying things for so long I have nothing left in me to keep trying medications and herbs, I simply cannot do it. I'm willing to do ivig, but that comes down to insurance. I am completely spent and exhausted in every way possible and I think I've suffered more than most people would in 100 lifetimes.


I want to live now, I don't want to suffer any more. But I don't think it will ever be a possibility. Though, Dr. C senses these feelings, he is deeply concerned, and 100% committed to helping me however he can. I trust Dr. C and he gives me hope, but I'm tired of traveling to NYC, I hate it there, the planes make me deathly ill, and I'm spent.


No results yet on LP. But please god let there be something after the experience I had.


It's just so hard to see all my old friends who literally abandoned me, literally left me for dead, move on as if I was a piece of dust in the wind of their lives. On top of it all, I'm desperately lonely, I haven't dated in 7 years and at first it's not bad, but it gets to you especially being young and stuck in bed almost all day.........and I don't think I'll ever be well enough to date so thus or that anyone will want me, so thus it seems I will be alone forever.


When consulting with Dr. C I can't look anyone in the eyes and he notices and watches my every reaction, he tried to console and encourage me and had the NP come in and tell me they'd "do everything in their power to help me"...... I know he cares, but why am so depressed?


They are making contact with my psychiatrist b/c he's really the only physician I have helping and they are talking about possible medications in the future for sleep, ocd, etc. I hope they have spoken.

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Ophelia -- thank you for sharing your experiences so honesetly and bravely. Many of us have also suffered from depression related to our kids illnesses, have lost friends who haven't been there for us during this alweful experience, etc etc. You are not alone and your depression makes a lot of sense.

I do think its great that you have Dr. C on your side looking out for you. That is something to be glad for.

All I can say is you need all your strength to heal yourself, so if it's possible, try to banish unhelpful thoughts that don't get you anywhere, like what has already happened. Try to focus on the future.


I[m sorry about the insurance cancelling the IVIG locally -- that part of your message is extremely puzzling. I'm not sure why they would do that. There doesn't seem to be any justification for it

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I want you to know that you are not alone. Sleep deprivation will definitely alter your mental and physical state. If the doctor prescribes something to help you sleep; at least try it. A good night's rest several days in a row will greatly help your wellbeing.


Facebook, Snapchat, Instagram, and other social media sites should definitely be avoided during this time. People are only posting the best or most dramatic things; so their lives look wonderful and exciting when maybe they are actually horrible. I would look at Facebook and see all of these perky moms with healthy kids complaining about going to baseball games and soccer practice and I would get very angry and jealous. I had to quit social media for awhile for my own peace of mind.


Surround yourself with humor and watch comedies if possible. This is very simplistic, I know, but I spent many hours watching "Andy Griffith" and "I Love Lucy" because they were no stress and they helped distract me from my situation. Avoid reading anything heavy or dramatic at this time. Your body and mind are healing, be gentle with yourself.


Your friends have not totally abandoned you in that they don't care, but it is very hard for them to sustain the friendship at the previous level. What you may not realize that they may be caring for you from a distance. I have been told more than once that people were praying for me and my son that I had not seen in years. I wish they had just called me to talk, but I am still grateful for the prayers.


You will come through this and be stronger for it, but it is a tough road. I will keep you in my prayers every day.



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They've denied our first appeal for ivig. They say I don't have an FDA approved condition and showed a table with the conditions THEY approve which are: PID and ITP, that's it.

Really not good. I've gone down hill since NYU and I've reached a point where I have no strength to keep trying random meds like I have for 10 years, the ocd and fatigue are unbearable at this point. SSI also penalized me for something that was not my fault and have lowered my payments, now I've got no money either to help us get by.


My ocd makes it where I feel like I need to check internet all the time on my phone, plus I think the insomnia and mind racing, but I really wish I could be okay with checking once morning, once evening and that's it. It's interfering with me resting, possibly napping, and getting sleep. I don't have facebook but do belong to chronic illness social site, I will have to stop going, it's stressful.

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Have you considered that EMFs might be part of your problem?


I'm sure there were wireless emissions all over NYU and planes are a bad offender as well. DD and I are quite electro-sensitive, and it was worse when we were sick. Before we started treatment I could tell when someone in the house had turned on the computer wireless - I would get shaky, have palpitations and couldn't think straight. I would go and check, and it would be on. We keep the wireless off (and disabled) at all times now unless we are downloading something to a portable device. Now I'm not so bad.


DD still reacts with increased ticcing and pain when we are in an area with high wireless emissions, ie., the mall or a museum. She also becomes strangely fatigued in these places. When she is outdoors she can walk or cycle for miles.


I always turn off the electric circuits to our bedrooms at night, and we have both been sleeping better. Usually my son turns off the circuits before he goes to bed. If he forgets, both DD and I will wake around 3 am, I will then go and check the breaker, and voila - it's on.


Your body can only take so much stress and EMFs can be a stressor on your body's own electrical systems (brain, heart, nervous system).

Edited by rowingmom
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