Yes, friends, I’m still here.

Not gonna lie, I almost wasn’t. This last month has been pretty rough, emotionally, and there were a couple times I had to knock myself out to shut off that incessant pick-axe of negative thought before it entirely removed me from this reality. Just yesterday, I was nearly overpowered.

It has three parts, this “What’s the Point?” beast (WTP):

1) Modern Medicine and medical professionals – they don’t know enough, they don’t listen, they’re disrespectful in how they talk to patients, they don’t see patients as valid sources of information, they don’t value patient autonomy, humanity, privacy, time, … It has been thus far impossible for me to find a doctor who satisfies all of the following: good listener, respectful communicator, more knowledgeable than I am on my conditions and tests needed, fully competent office staff (meaning, organized and on top of things so they don’t need repeatedly corrected and coached), cares enough to research things they’ve been insufficiently educated on, … There’s surely more to include in the definition of a good doctor, but that’s enough for today’s purposes.

2) Solitude – I’m alone. All day, every day, from lunchtime to between 8:00 and 10:00 p.m., I have a dog and two cats to interact with. I was relying on facebook for socializing, but I haven’t signed on since well before Christmas. I’m probably 90% sure I’ll be deactivating my account. Nobody was paying attention to anything I posted except a handful of people I have phone numbers for, and people’s posts just inspired too much sadness, anger, disgust and other negative emotions in me. It became toxic, and I do feel a bit better since removing it from my life. Still though, aside from digital interaction, I don’t have many options for support. Even those close friends who want and try to be supportive just don’t understand or don’t want to hear it because it’s so depressing or don’t have time because life keeps them too busy. I’d love to get out more, but we don’t have the money for much, I don’t have the physical resources to be active much, and we don’t get invited out very often at all.

3) Physiological – I have a disruption in the flow of cerebrospinal fluid (CSF). That is for sure. Whether it’s an actual Chiari malformation, scar tissue, protruding vertebral discs, vertebral displacement, or something else – maybe even a torn dura and a leak of CSF – I’m still trying to get those answers. The symptoms are there, though, and they include emotional dysregulation, cognitive processing problems, sensory processing problems, PAIN, weakness, lost coordination, memory and concentration trouble, adrenaline surges, autonomic dysregulation (heart, lungs, and digestive tract), etc. I am nowhere near as capable as I was a few years ago, and I’m unable to do much of the stress relieving activities I’ve relied on in the past.


So, after all the bad experiences I’ve had with medical professionals, some of it genuinely traumatic, I now have been overtaken by my anxiety when it comes to dealing with conflict regarding my medical treatment. November 22, I saw my new PCP again and asked her for a list of MRIs and some referrals to specialists. She was only willing to write one referral. OK, fine. You’re just delaying my progress, but whatever. Then, whether it was the doctor or her staff, I don’t know, but her office screwed up the MRIs – they sent the wrong orders in a couple of ways. I tried for a couple weeks to get things fixed, only to find out the one facility with a positional MRI machine doesn’t have someone on staff to administer contrast so I’d need to be put on a waiting list anyway.

That’s the moment I snapped. I broke in that very moment and was done. Done with people. Done with doctors. Done with life. Done with no one caring enough. Done with no one trying even half as hard as I’ve been trying to get me the help I need. Done with my emotionally unavailable husband. Done with my too-busy friends. Done with my body. Just done.

I’ve spent the majority of my time over the last month in bed. Some days, no matter what, I just couldn’t bring myself to get up. I tried, but I just couldn’t get my brain and body past that WTP beast. Why should I? I’ve exhausted the entirety of my self trying to get appropriate help and support, and no one cared enough to try harder/listen better/be more supportive/… What’s the point in my continuing to fight toward improving my situation if I’m the only one in the fight? Why try when no one is even acknowledging how hard I’m working? Why say anything at all when no one hears me?

I had given up on this new PCP and tried to go back to the physiatrist who diagnosed my EDS and referred me to her, thinking his office would get the MRI orders correct the first time, and he’d keep his offer to write new referrals. He canceled my appointment and said it had all been taken care of by the PCP’s NP.

That was another devastating blow. The only doctor I felt like actually listened to me IN YEARS, and the one who seemed to know most about EDS among the doctors I’d seen – my last little bit of hope – brushed me off.

I even put everything in writing and sent a couple messages to the PCP to try and clarify things and correct the scan orders, and that got ignored. I can’t call them. I just can’t. Even thinking about it puts me on edge and shuts me down. My brain just stops processing and fixates on all the bad experiences I’ve had with doctors and nurses, fully expecting that a phone call will result in another bad experience, and that bad experience would be the end of me because I just can’t take it any more. I can’t handle any more medical failures, no matter how insignificant they might actually be. I’m fully aware that this is just about ordering scans, which isn’t an impactful event for most people. When it comes to my issues, though, these scans are vitally important, and I’ve been waiting since July of last year for them. They are the key to proving my needs to skeptics and moving toward better treatment. If an office can’t get this right, how am I to trust them with anything else?

I finally was able to make a couple calls this morning with hubby by my side. We had a fight yesterday that resulted in him promising to be more helpful by talking to doctors offices for me. He had promised to call and straighten this out, but when I went to call one place, I accidentally called the positional MRI facility. Of course, the girl I talked to was bitchy and rude, and the orders are still not right, though they do actually include contrast now. Same thing with orders sent locally that don’t need the pMRI – they finally sent an MRI order instead of a CT, but the rest wasn’t right.

Now I don’t know what to do. I can see that the PCP cares and wants to be helpful, and I want to stay with her for that reason. However, I can’t trust her office to be attentive and accurate – something that can breed horror stories for patients, and I’ve already noticed either incorrect information or diagnoses I was never told about in my online record with this medical network (yet another problem needing addressed). The one good thing from all this was a referral to a spine specialist at an orthopedic hospital about an hour and a half away. I know he’ll be able to order the right tests, but what I wanted (and what his scheduler said is best) was to have the tests already done so I could take them to my first appointment and hit the ground running. He’s also just a spine specialist, though, so he won’t be much help for my brain, hip, or knee. I’m hoping he has good recommendations/referrals for colleagues who specialize in hips/knees and Chiari malformations.

Should I keep trying to get my PCP to fix the orders? It means dealing with a facility that I already don’t like or trust, on top of the conflict of correcting things. Or, should I tell this PCP to just forget it and wait for the specialists to order everything? It means less chance for error but more of a delay in treatment.

I’m stuck on that decision. I try to think about it, and I freeze up. It’s like my body wants to render me catatonic, and it’s just waiting for that last feather to drop on the pile of stressors. I can feel it. It’s like my CNS is standing with its hand on a lever, threatening “Test me, I dare you. I will shut this bitch down, motherfucker.”

I did up my vitamin D3 from 5000 IU to 20,000 IU daily, and I added a collagen supplement that includes magnesium. I have noticed feeling a little better since starting both of those, but I also spent yesterday crying, mostly in bed. I’ve been taking my Xanax more to help calm myself, but it makes me really sleepy so I don’t take it as much as I probably should. I’m at least spending more time lately with my brain able to process words properly. I kept wanting to write and just couldn’t put sentences together any better than a shy six-year-old. I’m also asking for help with my silent internal screams more and begging for death with them a little less. I know I’m not out of the WTP beast pit just yet, but I’m at least trying to look for a way out now.

#stillcocooning  #begentlewithme