The unexpected cost of pain control

I was remembering about my time in in-patient rehab following my time on the ventilator, learning to speak and walk again, how I fought pain meds tooth and nail.

Despite 6 ½ hours a day of intense therapy, I wanted to be a super-hero and take only the lifesaving meds: heart, anti-seizure, blood pressure, and the like. One night though, late, I was in bed on my side grasping the rail in pain, trying to keep my sobs to myself.

Eventually the two nurses who’d checked me in from the other side of the hospital (crying at the time) and spent a lot of time with me just talking, came in. Someone had gone by, heard me, and let them know.

They told me they’d seen others like me try to mask it, the pain, and it only served in less effective therapy, higher stress, & raised blood pressure, all because of being stubborn.

I told them (with my best "mask and fake you're ok" smile) that my family prefers to call me "bull-headed."

One of them said, not smiling, they call that "dead," because they see people stroke out & die from that stubbornness, directly. They wanted me to understand that I just can’t sit and suffer like that.

So I took the meds and haven't fought them since. I have never forgotten the lesson I learned that night.

Life in general

In a nutshell...

My CCF surgery failed (damn EDS)

My ortho is not happy with me having backed out of PT for my shoulder and now isn't giving me the choice to do it (damn EDS)

Have another EMG/NCS on Thursday (damn EDS)

My Pain Man appointment was moved from Friday to April 17, though he insisted it be this week

I have to wear the Aspen collar again (damn EDS)

I need to order a Pronex traction device as opposed to the last one (over-the-door), but am flat broke (damn EDS)

I lost my PT prescription for my shoulder (ok, honestly I threw it away when I refused to do it last month)

pain sucks

Ortho Man

SO I have a pretty bad rotator cuff tear and bursitis from Ehlers-Danlos dislocations. I'm being sent back to my PT for 3 weeks then see him again and will try cortisone (like I don't have enough of it in my body already from hip injections) and hopefully put off surgery for awhile.

It's always nice when you call your PT's office to schedule a return and they ask what it's for this time.

Son's MRI; Babette blanket

My son's MRI is scheduled for next week. I'm glad to have it done before I go to Baltimore for surgery a few days later. I admit to being unnerved and fearful last night when he came out of his room to tell us matter-of-factly about having pain in his chest. That was a first, at least he has never told us before of chest pain.

I had PT this morning and am glad it's almost done. On the other hand, that also means surgery is around the corner.

I finished crocheting all the squares for the Babette blanket---well over 100! I marked the progress chart toward the bottom of the blog to 95%. The other 5% I am reserving for the process of attaching them all together. I am putting a picture here but it's a little misleading. It only shows panels 1-8 because my dinner table isn't big enough for 9 and 10, the final two panels. I'll post another picture when they are all connected, and another after I add a small finishing border to complete it.

Physical Therapy aka Physical Torture

You'd think I would be the last person to call PT by the infamous nickname of Physical Torture, having worked in in-patient PT for years while working toward a degree in it. Being on the patient-side of PT is a different story. I've had PT so often the last 3 years.

I started PT again this with my therapist, K. I filled her in on the venous Thoracic Outlet Syndrome (scroll down to Venous type), which is more commonly known as Paget-Schroeder Syndrome. She wanted to see if she could feel it, being that it's the rare sub-type and not the typical fairly harmless kind the other 98% have. She felt the pulse disappear and burst out laughing with excitement. I asked if she could tell me what to expect post-op, and she couldn't. Though the PT's there treat plenty of TOS patients, none of them have ever had this type and thus needed surgery. They seem curious as well. In the picture, the problem is the blue artery that runs behind the collarbone & first rib.

So I've gone twice this week. Compared to other regimens I've had, this is pretty mild stuff. The goal is stretch the left side of my neck as much as possible, along with the muscle just below the collarbone. I start with an ultrasound treatment then have them massaged/kneaded, followed by 3 Theraband (only yellow) activities. Today she added a stretch where I put both hands on the two sides of a door frame and lean slightly, just enough to feel the muscles. And I thought I'd fall over right there.

I've been pretty stunned at how painful this week has been. It's one of those chicken-or-the-egg situations. I have had a tremendous amount of pain this week. It's knocked me flat on my face 24/7.

I don't know if this increase in pain is related to the PT, or otherwise. That's the joy (ha) of these diseases. You never know what is coming from which, or like the 4th of July with my appendix rupture, having spent the week leading up to it thinking my lower back pain worsening was just CM flaring up.

What concerns me more this time is the location. My chest has bouts of this before but never this bad or for nearly this long. Just below my breasts, right in the middle, is what has had me laid out lately. It doesn't feel like any heart stuff I've dealt with over the years, more EDS crap of course, so I just don't understand what the heck the source is. There's the pectus excavatum (sunken chest--thanks again EDS) but I don't think that's something that just gets worse? I have no dang idea and I just want it to stop.

Breathing is much more enjoyable when it doesn't hurt.

On a happy note, my 5 year old is doing much better in school, no injuring herself or others, and my 6 year old is hooked on math and become a reading fiend, spending time every day reading lots of chapter books. Right now he's been reading Star Wars Episode 1, a 4th grade reading level. I'm so proud of both of them!

DD's Babette blanket is nearly finished. Well, the squares anyway. I'm working on Panel 10, the last of them. Putting them together will takes ages and will be a new experience for me, but very exciting. I hope to be done before Baltimore and will take some skeins with me to begin DS's. It'll be great to do on the plane and such.

Not quite crash and burn but what is this

Dallas is out, at least for now. I'm going to work with someone locally for 6-8 weeks to build as much strength in the area as possible then we'll call him back and talk more about the surgery.

I also talked to Dr Dellon's office in Baltimore. He no longer makes Tucson trips and asked me to come to Maryland. I said it would be no problem given Medicare, only to find out he does not accept it. With the seriousness of the situation they are going to check Dellon's partners since some still make the Tucson run and see if any of them will take me.

I know it isn't a crash and burn but at the same time it rather feels like I've stalled. It certainly doesn't feel good.