[momzpeachy]

Hi everyone

I'm sorry it has been so long since I posted. I have not been doing well and every day is a struggle to get out of bed and do pretty much anything.

I have been doing ketamine at Hahnemann in philly and I am seeing one of Schwartman's partners...not actually Dr. S. I completed the 10 day outpatient plus a couple of the boosters. I just had 2 boosters last week and now I have to wait 3 months for the next!!!!!!!!

I have no idea what really happened to me. I'm worse than I was before I started the whole ketamine process. The Doctor says I have "maximal RSD". It's entirely full body and affecting my internal organs as well. The RSD is in my eyes..my right eye really bad and also I now have trouble swallowing, chewing and talking. I look like a giant strawberry! I am RED all over and swollen. It's horrible. My face looks disgusting along with my entire upper body. At least I can cover the rest of me with clothing at the moment. I hate it! I absolutely hate it! I can't sleep! I sweat so bad..full body! I look like I just got out of a swimming pool. Then I get the chills and freak out. Throughout the day, I will just get so hot and start sweating and feel like passing out...then it stops. I get dizzy and everything. I also turn even more red! I am so embarrassed to be seen in public anymore. I hate being around people because I'm embarassed and feel horrible. I have now slumped into a hermit shell and don't want to come out. I change my sheets every day. I also have bladder and bowel issues now which is even more embarrassing. I have trouble walking and using my hands now. Every joint in my body is inflamed. I can't even pick up an empty cup. I have atrophy in my feet and now starting in my hands. WHY!!!!!!!!! I don't get it! The 10 day ketamine helped..I felt great during it. Now I hate life. I hate waking up every day and feeling this way. I don't know what happened with these boosters...they didn't work? Also, I did have issues with the IV. My husband had to pull over on the way home the first day to pull the IV out. It kinked in my arm and was bleeding and hurt so bad I really did almost pass out. I couldn't breathe! it was horrible! Then the next day, she blew 2 veins! What a mess!

They are telling me I can't come in sooner for ketamine because it's "out of protocol". I think it's BS! My Dr is still trying to get me in for the 5 day inpatient ketamine. I'm waiting to hear on that but that can take some time. In the meantime, now what???? My Dr has not returned my phone calls and I am miserable! I need help and don't know what to do.

Can anyone give some advice here as to where to go next? I'm afraid it won't be long before I'm completely bedridden.

This cold weather sure isn't helping either! I am really hating this winter!

Take care everyone...

[keep smilin]

Originally Posted by momzpeachy

Hi everyone

I'm sorry it has been so long since I posted. I have not been doing well and every day is a struggle to get out of bed and do pretty much anything.

I have been doing ketamine at Hahnemann in philly and I am seeing one of Schwartman's partners...not actually Dr. S. I completed the 10 day outpatient plus a couple of the boosters. I just had 2 boosters last week and now I have to wait 3 months for the next!!!!!!!!

I have no idea what really happened to me. I'm worse than I was before I started the whole ketamine process. The Doctor says I have "maximal RSD". It's entirely full body and affecting my internal organs as well. The RSD is in my eyes..my right eye really bad and also I now have trouble swallowing, chewing and talking. I look like a giant strawberry! I am RED all over and swollen. It's horrible. My face looks disgusting along with my entire upper body. At least I can cover the rest of me with clothing at the moment. I hate it! I absolutely hate it! I can't sleep! I sweat so bad..full body! I look like I just got out of a swimming pool. Then I get the chills and freak out. Throughout the day, I will just get so hot and start sweating and feel like passing out...then it stops. I get dizzy and everything. I also turn even more red! I am so embarrassed to be seen in public anymore. I hate being around people because I'm embarassed and feel horrible. I have now slumped into a hermit shell and don't want to come out. I change my sheets every day. I also have bladder and bowel issues now which is even more embarrassing. I have trouble walking and using my hands now. Every joint in my body is inflamed. I can't even pick up an empty cup. I have atrophy in my feet and now starting in my hands. WHY!!!!!!!!! I don't get it! The 10 day ketamine helped..I felt great during it. Now I hate life. I hate waking up every day and feeling this way. I don't know what happened with these boosters...they didn't work? Also, I did have issues with the IV. My husband had to pull over on the way home the first day to pull the IV out. It kinked in my arm and was bleeding and hurt so bad I really did almost pass out. I couldn't breathe! it was horrible! Then the next day, she blew 2 veins! What a mess!

They are telling me I can't come in sooner for ketamine because it's "out of protocol". I think it's BS! My Dr is still trying to get me in for the 5 day inpatient ketamine. I'm waiting to hear on that but that can take some time. In the meantime, now what???? My Dr has not returned my phone calls and I am miserable! I need help and don't know what to do.

Can anyone give some advice here as to where to go next? I'm afraid it won't be long before I'm completely bedridden.

This cold weather sure isn't helping either! I am really hating this winter!

Take care everyone...

Dear Momzpeachy....

I am so sorry for everything you are going thru..Just when we think we have one step ahead we get set back a few feet huh???? Not sure but my thought is you are having an adverse reaction to the Ketamine????? Possible??

Rest and try to relax.... it sounds so upsetting but try...

[bobber]

Dear momz
It grieves me to hear about your condition, Im hopeing that it calms down, and maybe as KS said,Its a reaction of some sort,please know that your in my prayers,,,,Also I noticed your in P.A,,,,,they have terrible winters,,,,,keep posting,vent,stay positive somehow,,May the Lord give you relief,,,,,,,,,,,,,bobber

[hannah1234]

I had 3 day ketamine infusion back in december. I then made a trip up to see my sister in oregon... I live in bright 70 degree sun shining southern california... Orange County to be exact. And when i made the trip to oregon it was 30 degrees and i felt that same way... worse off than i was before i even had ketamine. I then had to have another series of infusions when i got back and it is around 70-80 here now, and I am doing MUCH better. I keep our house at least at 75-77. Cold weather sucks... my advice... move to the west cost where we can get you some sun shining weather Hang in there I am rooting for you and I know the feeling of feeling worse after going through all those days of ketamine. It is so tiring, and after our bodies are so tired, mentally it is a challange to get back up- but thats what we have the Lord for... rely on him its the only thing that gets me up in the morning. Have faith that tomorrow will be a new day. Bless your heart for all you have been through and come and vent to us... makes me feel important replying hehe. I am 20 and am attempting at managing so dont forget... im rooting for you!!!

[janejane]

i sent you a private message. I hope you will feel better and will be praying for you tonight!!

[hope4thebest]

Dear Momz,
I wanted to reply to especially let you know that you are being heard, so that you don't feel so alone in your pain ...
It so hard to understand why the doctor isn't returning your calls when you are in such distress. Please call again, and let the office staff know that it's urgent and an emergency. It sometimes takes those words to get a response and to get past the front office staff..tell them you may have had an adverse or allergic reaction and need to be seen..

I would suggest epsom salt soaks to ease your inflamed joints, but you need to check that with your docs!
You have been through so much...including the pain from the I.V.
Please try and rest and stay as relaxed as you can, as that can ease the pain..and help you stay positive, even if just a little bit..
We are here for you..
Hope4thebest xoxox

[SandyRI]

Dear Momz,

I recall that even after your initial first dose or 2, you felt that the ketamine wasn't as successful as you had hoped it would be. I am so sorry that you are where you are at the moment. Please keep positive thoughts!! Stay warm, remain active, talk to your doc. Perhaps you can try to control your pain and other symptoms with medications like Neurontin/Lyrica and all the others until alternative methods of treatment are identified.

Please don't ever, ever give up. You are extremely fortunate to be receiving treatment from a great specialist right now. Take care and know that we all care about you.

XOXOX Sandy

[AintSoBad]

Sounds terrible. Sounds as if you should have been taken off!
Now what will they do for you?

Prayers....

pete

[Jimking]

Are you taking any pain relief medicine at all other than ketamine boosters?

[allentgamer]

I was wondering the same thing as JimKing, because if your taking any kind of morphine that could cause the hot and cold sweats.

I sure do hope they get to fixin ya up, and you are in our prayers