Third Anniversary of Hysterectomy Hassles

Today I'm going to keep this rather easy on me because yesterday I had a really interesting treatment from what is known as a cranial osteopath and while I felt fine yesterday, today I felt like I was needing to regroup a bit (plus I had a few extra things on my plate today earlier).  I thought it was pretty neat that three years to the day that I had surgery in the osteopathic hospital in Grand Junction (performed by an MD, however, a really wonderful OB-GYN who I am glad to say I haven't had to see for a while, though I miss his FUN way of treating patients), I was having someone working on my body in what I call 'putting the finishing touches on Humpty Dumpty who is back together again'. 

I hadn't realized that it's very common for women with fibromyalgia to have fibroid tumors -- mine looked like it was growing antlers or something....   In order to use my experiences in the future for learning, my doctor was kind enough to take photos for me -- he normally brings his camera for such things and to be sure, I'd brought mine.  I also have photos of me all dressed and ready to go to a work-related holiday party 72 hours later which has a funny aspect to it, as there was a bug going around and so they'd cancelled it but not called me because they just presumed I'd not be coming.  WRONG.  To be honest -- the years of living with chronic fatigue and chronic pain had really prepared me to SAIL through a surgery and I'd been worried, thinking beforehand that it would be like 'insult to injury' and my recovery might take longer.  Again, I was completely inexperienced with how I react to such things.  I'd been on thyroid to supplement that mine was low (for a long time) and had been getting vitamin and mineral I.V.s for almost 2 years by then, including one the day before surgery to boost my body's natural defenses up. All these things added up to be part of the 'upcycle' I'm happy to report  having after years of being quite debilitated by my health.

I understand from Dr. Rollins' seminars more recently fibroids occur commonly with FMS (and many other women) because of the 'estrogen dominance' that occurs when progesterone drops (see other blog post titled Hormones are Here and another about his fibromyalgia for more info (links below).  Much of what goes on with the cascade that occurs with fibromyalgia has to do with hormones -- pituitary, adrenalin, gonadal, thyroid ... "it's all connected".  So the irony is that had I been more proactive in the past with learning and finding providers who could help me, even many years ago, the surgery wouldn't have been necessary.  I'd historically been prescribed birth control pills -- even into my 40s -- to control the symptoms, and ironically had not had an ultrasound of the uterus until I moved to Grand Junction, despite having excellent insurance coverage.  Again, a matter of not researching on my own enough and not having providers who were knowledgeable in long-term thinking.  

To top it off, it had to be abdominal since the uterus was so high due to it's never having had a baby on board!  You can only imagine the look on my face when I realized the reason the doctor and I kept going round and round about how much time he wanted me to take off after surgery (weeks!) was because he knew we were talkin' 'the BIG version of the surgery' and I had been talking to other therapists who had been back to work in a week...  because they had vaginal surgeries, so it was like comparing apples to oranges on recovery time!  In the type of position I held in a large practice and being the only OTR, there IS no time off for longer than long weekends.  (I haven't had a week off in over five years, aside from a week for a family funeral which occurred before I made my outpatient practice BUSY by focusing entirely on it and not working on call for other companies.  All these things added into my decision two years ago to 'do' Lumigrate.)  Since I was fortunate enough to have a fantabulous OT assistant who was just an outstanding therapist doing treatments, I only needed to do evaluations and discharges and it worked out that I could come in and push papers around within a week (which is half of the work in therapy anymore) and be back at it within a week.  

I'm glad now for the experience back then because I had 48 hours at a hospital as a patient and not a therapist for the first time, to get an idea of how many things can go wrong and how much people need to be learning about being what our model shows on the home page.  YOU need to be in charge!  I'd never had a family member in the hospital or skilled nursing/rehab back then and I have now and I continue to learn and work to have this serve others here, now or in the future. 

I reviewed yesterday's Dr. Oz today and they even covered this! (www.doctoroz.com, FYI)  Getting surgeries in the later summer was not recommended because doctors graduate in July so they're 'learning their way around their new hospitals' for a while.  Well, that kind of happened to me -- there's a nursing program here and I've heard that many of my nurses were literally on their first week -- maybe first days even.  The hospital had undergone a series of management changes in those years, which has now stabilized, but anyone who's worked in any system -- even a house -- knows that top people leaving and coming causes lots of ripples.  They were obviously needing to rely on each other, and I remember being a new OTR and even to this day we're always having to learn new things or continue getting better, just as anyone in any profession.  I'm concerned about the demand there is for qualified health care workers in the future and to some extent even today, particularly in some regions or specialties.  

I ended up being there for an extra 24 hours because someone had thought the medication to keep nausea away was expensive so switched to another on the list okayed by my physician -- which was a stomach motility stopper.  I'd never been on narcotics for pain and remember finally thinking of what I wanted to say about the time the doctor or nurse had left the room.  I may have been oriented to my room initially but don't recall it and was told about the notebook, paper, pencil, phone and etc that was out of sight to me in my hospital bed with the head raised on the second day when they were getting ready to discharge me.  Once everything got figured out enough so that I was not nauseous and had custard and tea and was energized and they tried to tell me I had to take the mistaken narcotics they brought instead of ibuprofen, I finally was able to talk for the first time basically and I'm not sure what words I used exactly, I just know that they quickly got it straight.  Then I got out of bed, got dressed (I'd taken a shower the day before before this all took a 180 and went awry), pulled my hair back, put on some mascara and lipstick and went out and asked them to get my discharge orders as I was ready to go home.  "Ms Ross, this is the first time you've been out of bed, we can't let you go now".  Well, I'd been left alone to struggle through a shower the day before (I'm an OT, it wasn't safe!) right after they broadcast to the whole hallway how sick I was in that shower room and was pretty insulted that someone sitting behind the desk didn't know that I'd been up the day before and showered and then had 24 hours of unnecessary and COSTLY bedtime since. 

Since my physician had, the day before, been coaxing me into getting up to shower despite my reporting being nauseous, I figured if he heard I was asking for orders he'd know I really WAS good to go, and while they were calling him I let them know since the other family had taken my side chair and I didn't have a chair on my side of the room I'd be out in the lobby.  Since it was the end of the year all the people putting things off until their deductibles had been met were in having surgeries so to have them over before the holiday time, so there were no private rooms as I'd requested.  Not only that, the room they put me in normally wasn't used and is now a store room or something I've heard, so there was no TV or anything.   My older roommate who had a neurological disease and that affects cognition and coordination was always confused but had become combative in the middle of the second night with staff -- accusing them of putting in a catheter without her permission and she HAD said it was okay, she just didn't remember it.  She had a really nice family and herself was very nice when not feeling confused and abused, would hear me if I made even the slightest noise or moved in bed and would think I was her husband who she obviously was reliant on at home.  She couldn't operate her controls to call for help, so I used mine to call staff.  I'd always worked in situations where there was a more intact roommate to help, and here I was being it!  She had family there constantly from 5 am to 11 pm and since she was up all night then I wasn't really getting much sleep.  They were trying to be so accommodating to her and would read the menu to her (she was on a limited diet but couldn't understand that so kept saying she wanted a hamburger.  If you've even been nauseous and know how it is to have to hear about food -- YES, that's what I had for literally HOURS -- many portions of almost 40 hours I was in that room.  SO when the nurse suggested I simply take another room instead of go home, I don't think I was very nice when I said 'you people have had another room you could have put me in last night and didn't offer it to me and I was in THAT room with THAT kind of roommate?  And you want MORE of my and my insurance company's money? I'll be up front waiting to see if you get discharge orders, thanks'.  Not too long after the nurse came up and pulled my IV right there and said they'd gotten orders.  We went over all my discharge orders right there in the front lobby with all the people walking by -- because there was nowhere for ME to SIT in the room my insurance (and I) were paying for.  "This is messed up" just kept going through my head on one hand and on the other I simply needed to find the solutions and move in that direction -- just like when you're driving on ice and go into a skid. 

About that time my family arrived to get me.  I'd gotten all my medications beforehand but since I couldn't take the narcotics, the doctor had prescribed some big ibuprofen like I had just taken and we needed to stop by the grocery store pharmacy for that.  Naturally I had to walk around and pick up a few things -- it felt as long as the hike I did this fall where my toenails are still black and falling off (7 hours).  Even a year ago I saw the checker that had helped me that day and we'd laugh at how funny she thought I was that day -- her mom had been one of my patients in my outpatient practice so it was a kind of 'symmetrical experience' to see her and I'd try to go through her line (she no longer is working). 

And then we proceeded to what I have been told was the most disappointing caregiving experience ever ... I needed to be driven or have an errand a couple of times and one bowl of soup heated up and other than that I was pretty much not all that different than normal.  It isn't like I had anyone to come work for me -- that's not the way outpatient works!  In order for me to bill insurances someone had to fill out massive packets for every insurance company there is.  I needed to get over it ASAP and had things to do!  That spring Dr. Young and I met once a week to design the Fibromyalgia Forum that provided the inspiration for Lumigrate about a year after the surgery. 

And that experience in the hospital I will always be grateful for.  Because if THAT could happen to ME (knowledgeable, a health care worker) HERE (small community known for having way above average health care due to the stuff I wrote about when our politicians invited President Obama to make our community a stop for his health care tour) in what is known to be an excellent hospital overall, then what is happening to other people?   I realized that our format for educating patients about the occupation of health care and becoming more effective through education and empowerment could benefit more people if done on a website.  And since the seminars I was seeing a year later at the Forum by Drs. Rollins, Lepisto, King, Young, acupuncture, and massage therapy were so popular and I was by then seeing the benefit of a year or so of 'good doctoring', Lumigrate has been intended to start with the topic of fibromyalgia as a focus BUT so much of what applies to people with fibromyalgia applies to MANY OTHERS.  Hypothyroidism, supplements, detoxification and cleansing, food allergies, and strategies for lasting change, full barrel syndrome, insurance and health care, and health management are the videos we launched with and have built blogs and forums around and then we're watching what's popular and what's not -- in order to know what YOU are interested in.  (Link below to that area of the website for your ease if you want).

So now I'm going to go to bed and appreciate that I'm home but know that I'm much more sympathetic today about people who are in beds in facilities intended to heal them ... one of those is my one of my family members.  Recently those have been Lumigrate followers and I hope they will, in time, want to contribute their experiences for people to learn from as well.  Because, in the future the beds may have you, me or your loved ones.  Lumigrate cares deeply about each person who is following our progressive health website and want to offer solutions to many aspects of health care that we can address effectively.  We have so far to go and hope we are all along for a bigger and better ride together with more people all the time. 

This week, I'm glad there's a new pair of hands, eyes and 'stuff between the ears' thinking about my health care and adding to the long but steady recovery I am making from fibromyalgia syndrome and chronic fatigue syndrome and that whole 'syndrome of syndromes' as I like to say.  I'll write MORE about Dr. Ilene Spector another time VERY soon.  And I'm going to keep chuckling at myself that when I'd let them know right after surgery recovery room when they wheeled me on my bed into the room that I had fibromyalgia and requested an eggcrate overlay and was told 'that's a therapy thing and they're only here during the day' I AM a therapist and HAD THE PHONE NUMBER in my cell phone right there for one of the vendors in town who would have come out at that hour and gladly sold me or my insurance a foam overlay.  They'd done a whole long pre-admsission interview too!  And NO eggcrates on hand?   I ended up with several PT visits the next week because my spasms were so bad from being on my back in a not so good bed for that long and the solution was right there at my fingertips.  Maybe there are some solutions for you a yours as well -- 

(For your convenience at your fingertips, LINKS

to video area of Lumigrate.com: www.lumigrate.com/catalog/seminars

to previous blog posts that relate to this:

www.lumigrate.com/blog/hormones-are-here

www.lumigrate.com/blog/fibromyalgia-and-chronic-fatigue-scott-rollins-mds-solving-mystery