Triggered by possibility of medically needed sedation

[Justmehere]

I'm fighting an autoimmune disease - one which has a decent cure rate, but the treatment is awful, and takes 18-24 months or more. The disease causes blindness when not treated, so it's serious, but it is not life threatening. I have been responding well to treatment. I have about 6-12 months of treatment left before the doc pulls me off to see if the disease stays away.

Treatment involves a lot of things to suppress my immune system, among other things, so I get sick a lot. I've had 14 infections in 6 months. The last one has cleared up but I have a doozy of a cough. It's pretty bad. The good thing is that they switched treatments to reduce infections and also added doing plasma infusions to prevent catching further viruses and illnesses.

Physically, I feel pretty good overall. The infection is gone and I'm not really sick anymore. But I have such a terrible irritation/inflammation related cough that it's hard I hold a conversation. It's so bad I've coughed blood spatters from my raw throat.

The ENT and the immunologist both called me today. They are both upset I'm still coughing but won't take the cough syrup with Codine or Vicodin in it or take the full amount of steroids. I managed to handle the phone calls ok - but I agreed to taking the full amount of medication. Now I'm breaking down. I can't do it. Their logic makes perfect sense. The cough needs to be suppressed so my throat can heal. And nothing else is working. It's been 21 days of coughing and trying every home remedy I could find.

But I really don't think I can jack myself up on steroids that will make me feel agitated (I have taken them before) and then sedate myself (it is a big trigger to feel sedated) and be psychologically ok. I can not do that. It's my body, is my mind, I know the limits. I can't do this to it and be ok.

Both doctors know I have PTSD, but not what it is from or how it affects me.

I don't know how to tell them or what to do. I saw my therapist today, before they called, and her spouse fights am autoimmune disease so she really gets it and is understanding and supportive. I coughed trough the whole session. We worked on triggery stuff, but it was ok. I left feeling grounded and safe - even kind of proud that I hung in.

My doctors called after the session and now I'm freaking out that my docs say my cough won't heal until I take these really triggery meds.

I would have talked to my therapist about it in session if I would have known beforehand. Argh.

She told me that I could feel worse later on tonight just from our session. I'm not sure what about my panic is related to the doctors strong advice that I'm terrified to take, and what is related to the session. One of the old trauma based fears that came up in session is that I am scared to let me body feel things.

Ugh. My thoughts are a spinning jumbled up mess.

I don't think I'm thinking very clearly. Does anyone have any thoughts or advice? Any input is highly welcome.

 

[ghotiff]

I'm not sure if I have any useful input, but I want to be supportive.

It seems that you are not sure if your concern about the full level of meds is being exaggerated by a difficult therapy session. Have you had this type of difficult therapy session before.....do you know how long it typically takes you to calm down from one. For example, if it typically takes 2 days, then wait 2 days before thinking again about your meds. From what you are saying, it seems that 2 more days at this lower dosage will be okay for your health.

 

[FindingMyself88]

I agree with what ghotiff said about waiting on the beds until you've calmed down from the session. I can totally empathize with something big always seeming to happen right after a therapy session. Not only are you on edge, but then you have to wait until next time. Is there anyway you could email or talk to your therapist before your next session? Sometimes that helps me (or did with my old T, haven't asked my new T about it).

((hugs)) if you want them. Take today easy and try to focus on unwinding from the session. Then when you feel better, tackle the medicine. Can you up the dose gradually? Maybe could they try a different type of sedative for you since the sedation is what triggers you? Some sedatives make you more sleepy instead of foggy, I find that easier. I don't have as bad an issue with sedatives, but I can understand how cause anxiety.

 

[greenleaf]

Is it possible that your T could talk to the doctors and help coordinate an approach that you feel good about? I'm thinking that this might be a good time to try to get extra help, since feeling physically exhausted and sick makes it even harder to work mental things out. You deserve gentleness and help feeling better.

 

[ghotiff]

I was wondering if while you work on your physical health, maybe you should cut back working on your emotional/PSTD health. Maybe use your therapy appointments to help you through your emotions of helping yourself physically and resume your emotional/PSTD work once your physical health is under control. I just wonder if you are pushing yourself too hard in too many directions and maybe you need to be kinder to yourself and tackle one problem at a time.

 

[pamcoco]

I am so sorry for your physical and emotional struggles. I have severe auto-immune disease, celiac, auto-immune inner ear, sjogrens, etc. I am losing my teeth and cannot make it to a doctor. My triggers are related to an assault by a doctor, but I really 'get' knowing the logic of medical treatment and being unable to follow through. I am now seeking help through a rape crisis center to get a social worker to help manage what I know I will not. I am done telling myself I will take care of it next week, always pretending that I will overcome my fear and get the healthcare i need. I won't, I can't, it is bigger than me and my current support system.

So I guess my thoughts are a projection of my own weakness. But to allow triggers possibly to cause blindness or damage to your lungs/throat or in my case, toothless and deaf, doesn't seem like a healthy emotional decision long term while it may reduce anxiety short term. I really agree with ghotiff:

maybe you should cut back working on your emotional/PSTD health. Maybe use your therapy appointments to help you through your emotions of helping yourself physically

I am sure I will be really, really triggerd by the loss of hearing in both ears and adjusting to dentures and lord knows what other ailments considering my rapid physical decline without healthcare. So avoiding triggers, in my case, is instant gratification to a certain degree. How to deal with triggers that have kept me sick, home alone, crawling, is something I have yet to figure out. But admitting to myself this area of my life and mental health is beyond my control is some progress...... I am fallible.

Be gentle with yourself. That is what I wish for you, loving understanding toward yourself. You have MUCH on your plate. Your intuition seems alive and well under the more consuming emotions and you will know what is right, when it's right.

;-)

btw I am intrigued about the treatment you are receiving......

 

[Justmehere]

@ghotiff - Thank you for the support!

do you know how long it typically takes you to calm down from one. For example, if it typically takes 2 days, then wait 2 days before thinking again about your meds.

It does usually take a day or so. It makes sense to wait until the session related anxiety has calmed down before throwing other factors in. Good idea, thank you.

I just wonder if you are pushing yourself too hard in too many directions and maybe you need to be kinder to yourself and tackle one problem at a time.

I have been wondering this myself! It's hard to sort out. There is a huge correlation between PTSD and autoimmune diseases over all. I have a lot of triggers around doctors from a family member who was abusive to me as a kid who was not just a relative, but also my doctor. (argh, no boundaries!!!) My therapist and I have done a lot of work on that, and I'm not triggered as much in medical settings anymore... and now we are pushing into other trauma, and I think today was a good example of trying to tackle too much. I think I will talk to her about taking breaks from trauma work, but still doing therapy, when I have more medical stuff going on. Today was too much.
@FindingMyself88 - thank you for the hugs and suggestions. I left a message for my regular ENT doc to see if we could go up slowly on the medications to make sure they don't backfire.

Is it possible that your T could talk to the doctors and help coordinate an approach that you feel good about?

@greenleaf - This is a good idea too - one I have been wrestling with for awhile. I have signed the release forms before for her to be able to talk to them, but then I got scared. I'm not even sure why, so she told me she would wait for my ok. Thinking about doing it today did help me have the courage to text her to tell her how scared and overwhelmed I am.
@pamcoco - I'm so sorry you struggle with autoimmune disease too! It is a rough battle! I started having symptoms just over a year ago, and it is rough. Having trauma caused by someone who is a healthcare provider makes it tough! I'm glad you are working with the rape crisis organization and getting hooked up with a good social worker. Treatment rough - and so is the laborious work to find it and endure it. I'm a part of several autoimmune disease networks - I have been since I was diagnosed. It helped me see the value in having as support system and knowing I'm not alone in this. It also helped me have the courage to join this forum too.

But admitting to myself this area of my life and mental health is beyond my control is some progress...... I am fallible.

This is so key! It is a really big issue for me to admit that I’m not in entirely control of my health. I can’t make my body and brain do what I want it to do all the time. Sometimes, in order to heal, I have to feel a lot of icky things. I have a really hard time coming to terms with this. It makes me really scared. Thank you for your words of encouragement too.
p.s. I will send you a private message

After reading everyone’s responses here, I texted my therapist about what was going on. She was really supportive. I called the doctor and explained that being sedated is hard for me, and he answered some of my questions. I was crying and felt really foolish but he was quite patient with me. I still don’t have the courage to take the medications, and my cough is horrendous – the doc began to wonder if I have pertussis (whooping cough) because I was coughing so much on the phone. He called a different medication in, that is less effective, but less sedating. I will also see him first thing in the morning. .

 

[FindingMyself88]

Good for you for calling. I do hope they find a good combination soon that will help with the cough but yet keep you from being overwhelmed with anxiety as well. Please keep us updated about how the appointment goes and medication. Hmm, my close friend's newborn baby has whooping cough, it's really sad.

I am so glad you were able to get up with your therapist, not many therapist allow texting. Sending good thoughts your way!

 

[ghotiff]

It sounds like you are developing a really good plan for yourself. Well done !

I have been wondering this myself! It's hard to sort out. There is a huge correlation between PTSD and autoimmune diseases over all.

This is such a 'chicken and the egg' problem. The PTSD contributed to the auto-immune....so which to tackle first the symptoms or the underlying cause. In my humble opinion...first you need your physical health under control as much as standard medical treatment will allow (assuming no invasive, potentially long-term damaging procedures). Then, once you are in a physically stronger position, doing the work for PTSD 'should' be a bit easier, and hopefully will clean up anything left that standard medical treatment couldn't. Please feel free to disagree with this view, its just my thoughts.

 

[Justmehere]

I talked to my therapist and processing trauma is on hold until this cough gets a lot better. She was very supportive about waiting to take the medications, and also taking them when I do feel ready. I talked to my doctor too, and they said there's really no other options they have of anything weaker that they can try because I'm allergic to the other options. After a couple of very bad coughing fits I canceled everything on my schedule, and started the steroids and the Vicodin about an hour ago. I feel drugged, anxious, and still coughing. I’m crying now too. Crap, this sucks.

 

[ghotiff]

I'm sorry that your anxiety is affecting you like this.

 

[FindingMyself88]

I am so sorry JMH ((((hugs)))) if you want them. I was just about to ask you how you were doing today. As hard as it is, try to do something to relax and maybe you could allow the sedative to work and get some sleep so at least it would give you some temporary relief from the anxiety. If you can't, then please stay here and talk with us or do something kind for yourself.

Thinking of you! :hug: