pity party for one

[LoveTrains]

Ugh you guys. Four years ago I was wicked sick and it turns out that chronic illness, which was in remission, is back. I feel so awful and its hard to explain. Plus the specialist I was seeing is apparently no longer seeing patients and now I have to go see uber specialist in Boston.

I am irritated at myself because although no one really knows what causes the disease, women with obesity are pretty much the population that gets this disorder. I lost thirty pounds which sent the disease into remission. But over the last three years I have slowly gained back 20 lbs and now I have it again. It causes terrible, debilitating headaches, blurred vision, and I have periods of confusion and disorientation. 

I seriously just hate myself right now. I need hair pats.

[Deleted]

Oh man, I'm so sorry. Big hugs to you.

[mbcdefg]

I'm sorry hon

[IrishBelle]

((Hugs)) I'm so sorry. Hopefully you're back in remission soon.

[jenikate]

((Lovetrains)) I hope the new specialist can help you get back into remission quickly.

[mskitkat]

*hugs*

[KaraOrNot]

That sucks. Hugs.

[imojoebunny]

I am sorry. It sucks to be chronically in pain or Ill. I have been there, and probably will be again.

I hope you find a doctor who can help you soon.

[sproutmd]

I am so sorry you are in pain and upset. I hope the plan you had last time will work again, so you can be in remission. Don't be so hard on yourself.

[AAM2012]

((Hugs)))) is there someone local that you could go for walks with to vent/get some stress out?

[spankswife]

(((Hugs)))

[krystee]

Big hugs. I am so sorry you're going through that again.

[CloudBee]

I'm sorry. I remember the problems you had with that spinal tap a few yrs ago. I hope the new doctor is amazing, and you find relief soon.

[liveintheville]

Oh LoveTrains. I'm so so sorry. If there's anything I can do please let me know.

[fortmyersbride]

Pseudotumor? I'm sorry your headaches have returned, that is such a frustrating condition.

[wanderlustfoodie]

I'm so sorry. Hope you feel better soon.

[anna7602]

Big hair pats. Health problems can be so demoralizing.

[bostonmichelle]

*hugs* I'm so sorry.

[cosmos]

[awkwardpenguin]

I'm sorry. *hair pats*

[rubytue]

Oh no *hugs*

You had a pseudo tumor, too, right? Is it that again? I hope it can go back into remission quickly

[lasagnasshole]

I am really sorry. I hope you can find relief soon.

[LoveTrains]

May 8, 2014 20:35:35 GMT -5 fortmyersbride said:

Pseudotumor? I'm sorry your headaches have returned, that is such a frustrating condition.

Yup!! Do you have this? I had never heard of it when I was originally diagnosed four years ago.

Thank you all so much for the kind words. I really appreciate it.

[ESF]

Oh I'm so sorry. Hopefully the specialist can help you out and at least make you comfortable until it goes back into remission.

[LoveTrains]

May 8, 2014 21:06:13 GMT -5 @domerjen said:

That sounds horrible, I'm so sorry. Does it come in relation to your period? I have a friend who just started experiencing similar things at the beginning of her period... actually cannot speak sometimes. The first time they thought she was having a stroke.

Nope not for me I haven't had a period in years with my Mirena. Although there is some research that suggests the condition is exacerbated by hormonal birth control. It's pseudo tumor which is also known as idiopathic intracranial hypertension.

[fortmyersbride]

May 8, 2014 21:20:57 GMT -5 LoveTrains said:

May 8, 2014 20:35:35 GMT -5 fortmyersbride said:

Pseudotumor? I'm sorry your headaches have returned, that is such a frustrating condition.

Yup!! Do you have this? I had never heard of it when I was originally diagnosed four years ago.

Thank you all so much for the kind words. I really appreciate it.

I do not, but I've seen many patients with it and I cannot imagine being in your/their position.  I mostly see them when they fail conservative treatment and have surgical intervention.  I hope your new specialist has some great ideas for treatment.

[LoveTrains]

May 8, 2014 21:51:20 GMT -5 fortmyersbride said:

May 8, 2014 21:20:57 GMT -5 LoveTrains said:

Yup!! Do you have this? I had never heard of it when I was originally diagnosed four years ago.

Thank you all so much for the kind words. I really appreciate it.

I do not, but I've seen many patients with it and I cannot imagine being in your/their position.  I mostly see them when they fail conservative treatment and have surgical intervention.  I hope your new specialist has some great ideas for treatment.

Ugh I really hope I don't get that bad. Last time I was well controlled on diamox and I just picked up my prescription. Are you involved with shunting or something else ? Feel free to pm me if you don't feel comfortable sharing. I will hopefully get a consult with the neuro-opth soon. Today I just saw my pcp and a regular opthalmologist who were comfortable diagnosing me with my symptoms and the papillodema. I am hoping that the neuro-opth doesn't want me to get a lumbar puncture bc that was awful last time as I had a leak and a spinal headache for a week until I got a blood patch.

[fortmyersbride]

May 8, 2014 21:55:41 GMT -5 LoveTrains said:

May 8, 2014 21:51:20 GMT -5 fortmyersbride said:

I do not, but I've seen many patients with it and I cannot imagine being in your/their position.  I mostly see them when they fail conservative treatment and have surgical intervention.  I hope your new specialist has some great ideas for treatment.

Ugh I really hope I don't get that bad. Last time I was well controlled on diamox and I just picked up my prescription. Are you involved with shunting or something else ? Feel free to pm me if you don't feel comfortable sharing. I will hopefully get a consult with the neuro-opth soon. Today I just saw my pcp and a regular opthalmologist who were comfortable diagnosing me with my symptoms and the papillodema. I am hoping that the neuro-opth doesn't want me to get a lumbar puncture bc that was awful last time as I had a leak and a spinal headache for a week until I got a blood patch.

YGPM!

[Deleted]

Oh man, that sucks. I hope the über specialist is helpful!

[Pilsy]

That sounds miserable. I’m sorry.