Ptsd And Multiple Sclerosis

[EvenStrongerNow]

(((@pamcoco))) Oh believe me, I have been in that temper tantrum phase myself and you are not a whiny baby. You were traumatized and your body has turned against you. It's not your fault. You didn't ask for this--any of it.

You comfort me, I comfort you. That's how this works :D <3

For me, I look at it like this. I didn't have this all of my life and now I have it. Of course it could be a combination of things, but I set my mind on it being one thing rather than a bunch. That thinking overwhelms me and it is what kept me from seeking the help that I need for so long. It is what kept me in denial past having good coping skills.

My mind is my greatest defense mechanism haha. I am sure that I can fix myself and I will do it until I'm blue in the face. I'm stubborn like that. If I can just find the thing, I'm sure I can conquer it. It's one of the ways in which I try to control what makes me feel so out of control and so powerless. It's one of my internal triggers--feeling powerless. I'm a huge fighter, but someone on these boards told me to get out of the rink with myself when I so often went on the hamster wheel. That stuck inside of me like the craziest crazy glue known to man/woman.

When I took PTSD by the horns, that comment has been what has driven me through to this point and will keep me going.

I'm rambling, but you are doing amazing too. Celiac's is no joke, no joke. I'm so sorry you have to deal with that every day.

 

[goingonhope]

Hi, I've been popping in and reading some here. I relate to lots. I don't know how to reply.

 

[pamcoco]

Hi, I've been popping in and reading some here. I relate to lots. I don't know how to reply.

Oh, dont hesitate to join in! I have no idea what is right or wrong so throw caution to the wind ;-)

Oh believe me, I have been in that temper tantrum phase myself and you are not a whiny baby. You were traumatized and your body has turned against you. It's not your fault. You didn't ask for this--any of it.

Thanks for that. I am drowning in shame that I somehow created this, of course a message that is confirmed by what I used to call my friends and family. But sometimes I think, How absurd!? , who would create this? This sucks.

I have an extra challenge, I was assaulted by a doctor, my gyn. I need to see doctors desperately but my denial skills are extremely skillful in this area. I just never seem to have the resources, the money, the ride to get to the doctor. Truth is I have flashbacks so severely in the office of any doctor or dentist, I cannot, will not walk in the door. I am ashamed of this too but this issue may just put me in the grave. I can go to the office of the shrink I was seeing before the assaults but that is all. Anything medical related is outside of my coping skills.

Believe it or not I have really good coping skills. Always referred to as the strongest person people know. Always told that they don't know how I have survived. The universe has a way of pushing these things outside of my control if you will.......

 

[goingonhope]

I didn't want to get the spinal tap. I was too scared. I wish I had, but maybe back then, it wasn't the right time. Maybe now with having health insurance again and being in a better place in recovery, maybe now I can handle it. I found an MS specialist through Cedars. I will go this month to get another MRI and the spinal tap that I've been putting off for so long.

EvenStrongerNow, I hope you are forgiving yourself.

I too was scared of a spinal tap and remained that way for numerous years.

For me, and my mother likely meant no harm, yet she had emotionally described, from her point of view, just how she imagined a lumbar puncture to be. Meanwhile, she too was simultaneously sharing her past experience as if her different procedure and traumatic experience was one in the same with a spinal tap and with what layed waiting ahead for me, if I were to follow through.

And, though similar as in (involving spine and needle) apparently my experience of much later having a lumbar puncture turned out not to be anything like her experience, or procedure/process/outcome.

For me it was scarier then it was anything else. It didn't last long (and prior, lasting, growing fears) had. Perhaps it's loss of memory, but I don't think so and I recall simply showing up afraid, feeling afraid, cooperating, some discomfort and then very easy, manageable pain.

EvenStrongerNow, no matter what the experience for you is, I trust you can and will handle this. Well done in finding yourself a MS specialist, growing stronger know matter what and in sharing.

 

[StarChild]

@EvenStrongerNow, I too had a lumbar puncture (with full blown PTSD). It was an emergency, for the doctors tried to exclude, that I had a stroke, or a meningitis. (The right side of my face went numb within half an hour, including my tongue. And I passed out several times during the transport with the ambulance). So at the hospital, they just informed me, that they'll do a lumbar puncture right away, amongst several other tests.

If I remember correctly, I lied on my right side, had to tuck up my legs and bend my spine. (A bit like a croissant) The doctor who did the puncture, told me to relax, breath softly and slowly, and not to cringe. I'd say, he did it very well, for I felt only a little bit of pain. And I would lie, if I'd say, it was severe pain. On a scale from 1 to 10, I give it a 4. A massive toothache is really worse, from my experience.

Hey girl, I really like to encourage you to do this necessary procedure. For you do it simply for yourself. And may I be a bit challenging, by saying, you ow yourself the best examinations and the best treatment. If you like, you can send me a mail or tag me, as soon as you'll get the date and time to do the lumbar puncture. And I will light a special candle for you and will accompany you with my heart. But of course, only if you're comfortable with it. Sending gentle, encouraging hugs your way. :hug::hug:

 

[tillybee]

This thread is great & shows the group support a member when they needed it. That's what being heres all about.

@EvenStrongerNow to write all of that must have really took it out of you! Bless you!

I've not been able to do it yet, on here or personally. I also have a problem with traumatic amnesia so I can't connect with it just yet. However, when I do I know I'll be safe here.

Good for you :)

 

[EvenStrongerNow]

Pamcoco, so sorry :( When you come back to the city, I will go with you to the doctor. I will walk you in there and be with you :)

 

[EvenStrongerNow]

Thank you everyone. The support here is just so beautiful. *tear*

I have been really afraid of getting the puncture. I've been told by others who have gotten it that the small amount of pain felt is from the numbing shot and the puncture itself just feels like someone pressing your back with their thumb.

I never used to be afraid of any medical procedures until the medical trauma ( I also had an emergency surgery on my left ovary February 19th--I think it was, but it was in 2009, open stomach surgery, when a cyst ruptured and I hemhorraged. I had a morphine blackout. I didn't even know I had a surgery. It was awful and I thought they took my ovary without my permission until the surgeon came in to clear it up that he was able to fix it--the nurses didn't know; my charts just said oophorectomy).

Now, I almost pass out just from getting blood work. Anyone sticking anything in me is so frightening. I can't stand the thought of not being able to see what they are doing and not trusting the person doing it because I can't trust people anymore.

Yes, @SweetLullaby, I love your candles. Thank you :) They are so healing and I feel it all the way here. The last time you lit one for me when we had to put our Sasha girl down, I felt so loved, connected and so safe.

 

[StarChild]

I have an extra challenge, I was assaulted by a doctor, my gyn. I need to see doctors desperately

Dear @pamcoco, I thought about this. Would it be an option, if you would take a good friend / person of trust of yours, with you to the doctor(s)? Maybe someone who could even be with you during the examination? So you don't have to be a single second alone with the doctor. And for the gynaecological examination, you could maybe wear a skirt to shield your body a bit and do not have to feel so exposed?..

And please, don't feel ashamed. It's all natural and your body is amazing and beautiful. May sound strange to you, but it really is.:tup: Sending gentle hugs your way, if you can accept them.:hug:

 

[EvenStrongerNow]

I just realized you said the Gyn. I also realized, since you don't know me, how strange my comment may have sounded about going in there with you :D

 

[pamcoco]

That's funny EvenStronerNow.

I have noticed how hard this response has been for me to write, it makes me anxious writing about this. That is why it has taken me so many days to respond.

But the doctors I need to see are for autoimmune inner ear disease. Its from my immune system attacking my organs which creates debris. The autoimmune disease has also caused me to have severe allergies. The debris and histamines in my blood stream are killing my inner ear. I take heavy over the counter medication so the vertigo doesn't take over and I can walk. I take all of them daily, Claritin, Zyrtec, Allegra as well as nose spray and my prescription asthma meds. I need to see an allergist and an ENT. I need immune suppressors to slow my inevitable deafness and lessen the vertigo.

I also need to go to the dentist, because the autoimmune disease has caused my mouth to have no moisture and my teeth are decaying rapidly.

SweetLullaby, here is the truth which is embarrassing. I have no current resources for support. Today I am packing because I have to move to a hotel. I am not allowed to stay in the family cabin when my brother vacations here. My family believes I am lying about my ailments and my mom and her husband believe I owe them 80k for some reason.

In the friend department, they have dropped like flies. I realize I'm high maintenance. Currently have 2 friends I talk to regularly but both are drained by the many favors during this emotional, physical and financial crisis.

Over the past couple years, I have asked many times and have been promised support by several. I explain that I cannot manage my avoidance and that I have severe flashbacks, causing me to become irrational and want to run for my life out of the doctors office. I have made it to about 3 doctors visits in 5 years.

In 2009 I had a 10 hour reconstructive surgery to repair the damage from the GYN. I never returned for a follow up. I don't no anyone here in Mammoth and I the two people that are my closest friends basically will expect me to suck it up and just go to the doctor.

Don't get me wrong, one of my friends in particular has hung in there when everything in her wanted to run and hide from me. She keeps coming back and while she doesn't understand my curent state, she does all she can to help.

So there it is, I am alone and afraid to see any doctor.....

 

[EvenStrongerNow]

(((((Pamcoco))))) So sorry :( :( :(

So, it sounds like you have some answers with some of it or do more tests need to be run regarding the autoimmune stuff?

Someone many years ago, after my ovary surgery, a stranger in a grocery store, she said, "Don't ever allow anyone to tell you that something is all in your head. It's your body and you know your own body. Nobody else travels inside of your body. You take as long as you need to heal."

She told me that because she overheard my ex going on and on about how long it was taking me even though I had just had that major surgery four months prior. I did a lot after my surgery because I had to. I had to walk for miles and miles because he caused us to be homeless. I had to wait in long lines at social services to try and get food stamps, shelter, and medical care. It was a nightmare.

Her words, even though they were referencing my surgery at the time, have really helped me deal with what I have going on autoimmune wise. Those words have helped me discover my own voice in my own body. I know the difference between what my body used to be like and what it's like now.

I am the most proactive person that I know. I realized that all of my problems could be stress related, diet related, or any number of things. I stopped googling, I stopped keeping track of symptoms, I have done so much to try and get better. I even educated myself on all kinds of things so much so that I could probably earn a PHD in neurobiology, etc. lol

But now, since I've worked so hard on all of those things, it's obvious that though those things may have been making my experience worse, there is something still present in my body. And being able to look at how far I've come since the hardest times really helps too.

I will pass that along to you now. You are doing the best that you can. You didn't ask for any of this. Who would???!! It's so difficult when our own bodies and brains turn against us and we don't get much of a say in it. Isn't that why we are all here supporting each other day in and day out?

Also, it seems you are being very proactive about this. In a way, I can relate to medical trauma. I have a lot of fear of doctors, tests and procedures because of my experience. Even though doctors didn't cause my trauma, I have a very hard time because of my trauma being a diagnosis.

I told my neuropsych on Wednesday that I wanted people to tell me it was all in my head. I wanted people to tell me that I am crazy. When he asked why, I said, "Because. Then it is something I can have control over. Then it would be something I will get to have a say in. I don't want it to be real."

That was very important for me to recognize that. Of all the people who told me it was all in my head, of all the people who told me it was just stress, etc, I tried their way. I did the things "society" "suggested" and guess what? I'm still here and I still have these symptoms. There's something to be said for that.