I can’t believe it has been over four months without posting an update!

Posted By MissyFoy

Monday, October 3, 2016

Of course, I feel so slack for not posting any kind of update.  I have been so slow answering emails, too.  Part of it is the difficulty I have been dealing with about my health problems and my increasing loss of functional status.  Oh, yeah, the pain hasn’t helped either.  In the pic below, that is not a shadow; it is the bruise that an arm muscle spasm caused when it tore the muscle.  They’re worse when they happen in my back.

armbruise_2016_0706

There have been healthcare provider problems as well, but I won’t go into that in any kind of depth here in such a public forum, but I’ll explain a little bit of it (mainly so that others with similar problems will know that they are not alone, but also to give others a little bit of insight into how much the medical profession is sort of incestuous in how they control each other).

It seems that the pelvic fractures and bone marrow edema that happened when my neurologist put me on a combination of mycophenolate and high dose prednisone has caused some permanent damage.  Despite my repeated efforts to report the problems that the medication regimen was causing, I was ignored, even bullied into continuing the regimen.  My primary care doctor and the ortho doc I ended up being sent to stopped the meds.  I have been working with a great orthopedic team and they have been trying everything they can to improve my functional status and to decrease the intense pain I have every day.  They have told me that some of the damage appears to be permanent, though.  It makes me mad because these were extra problems that I did not have and did not need to end up with, but ….

In addition, unfortunately, now the big hits of prednisone have thrown me into adrenal failure.  My endocrinologist has said that it is probably what is called Iatrogenic Adrenal Insufficiency (meaning that it was caused by the medications and may be reversible, but maybe not).  So she has been working with me on that and finally had to send out a letter to all of the other doctors I’m seeing that she is the ONLY one who has the authority to control corticosteroid dosing, period.  I had lost 15 pounds in about three weeks, had mentioned it to several healthcare providers who did not even react, and then my primary care doctor picked up on it before I even had a chance to go through my list of issues (yes, I know I’m OCD, and I go to the doctor with a list).  I went from 118 to 103 pounds in about three weeks.  He had looked at my medical record before entering the exam room and brought me straight back out to the scale to weigh me again.  So, he then asked several questions about adrenal failure … yup, yup, yup, yes, I think so, etc … and tested my cortisol level = 2 (that’s seriously dangerously low).  I don’t know what I’d do without my primary care doc!  Dr. Kallianos is the bestest of the bestest.  Actually, the entire private practice he is in is great.  They picked up on my bone marrow edema with two pubic fractures and two sacral fractures while I was dismissed by others (so four pelvic fractures … no wonder I couldn’t walk and was in sooooo much pain); they picked up on the c. diff. infection I had contracted and treated me for it; they found my adrenal insufficiency while everyone else ignored me; they have taken me seriously on my pain issues while others have not.

My Endocrinologist, Diana McNeill, has been my other great physician.  I have seen her for about 18 years now.  She jumped on the adrenal insufficiency right away and even called me hours after the Emergency Room visit that was triggered by the adrenal issues.  She is great.  I have a girl-crush on Diana McNeill!!  She’s smart, direct, honest, capable, up-to-date, and compassionate as well.  She is wonder woman, really!

Anyway, with all of these things going on, I have just had no real motivation to write anything.  I have been in a funk.  I think the biggest problem has been pain.  It has also been extremely difficult to see my coordination and functional status continue to get worse.  It has also been frustrating to have healthcare providers tell me that I’m doing so much better when I’m getting so much worse (even ones who have seen me for the first time … WHAT?!).  They enter the exam room without even reading my chart and then are surprised that I have had three ER visits, or whatever.

Suffice it to say that I have just had this mudslide of difficult things to juggle.  At least I have Dr. K and Dr. McNeill.  And, I have been seeing a psychologist mostly weekly since all of this started and he has been amazing as well.  He has really helped me learn to put things into proper perspective, to compartmentalize things so that I can think clearly about what I have control over and what I don’t, to vent when I’m frustrated and upset, to help my husband feel like he’s not alone in space somewhere dealing with being a family-caretaker with no support, etc.  I would really recommend that anyone facing a serious, chronic disease seek out therapy to help you learn to cope with all of the unexpected things and even the expected ones.  I would also recommend that you have your care team split, so that they are not all in one single group.  I say that because being in a tight group with no separation can blind providers to your individuality; it can make them susceptible to the pressure to follow a treatment plan that may not be working; and it limits their ability to recommend tests or treatments or ending of treatments that might disagree with another provider.  I have actually been asked (I would hesitate to say pressured yet) into switching my primary care doc and my endocrinologist.  They are both sort of outside of the system (my primary care doc is really out of the system as he is in a private practice that is only affiliated for insurance purposes).  Also, my psychologist is really outside the system.  My Endo is just sort of separated.

Well … that all has sounded so upbeat, huh?!  I apologize for the rant there.  I could have made it worse, so at least I held back a little!

I am really looking forward to Fall.  I am hoping that getting my adrenal problems addressed, continuing to work on my bone marrow issues, and getting pain down to a manageable level will all help me to be able to get out in my garden to get some Fall/Winter lettuce planted, to transplant some things, to do some weeding, etc.  I also want to be able to do my PT exercises!!  And, we are having someone come in and service my treadmill so that I can start trying to do some walking/joggishing on it while holding onto the bar (it keeps tripping a breaker right now so I can’t use it).  Currently, the only way I can walk/joggish is to go to a dirt trail and use my converted baby jogger (it puts me forward between the two back wheels and gives me a bar to hold for support so that I don’t fall.  My husband and a welder up the road made it for me!  (insert smiley face)

jogger_converted

The only problem at all is that the back wheels sort of nose inward slightly at the front and so if I try to take it on pavement, it bounces side to side to side to side, etc.  We are going to try to fix that problem, but all else is great.  It doesn’t do the bouncing thing on the dirt trail because the sandy dirt allows the wheels to “slide” just enough.  I suppose it still creates some drag that I’m not aware of, so once we fix it, I’ll bet it will be even that much better on trails.  Pretty much, though, I’m feeling like I’m married to this thing right now if I want to get outside, unless I want to “run” 13 minute miles, walk, or fall down (or all of those).  It folds up and fits right in the back of my car!  And, it has a little shelf with bungie cords that I put all of my stuff on (i.e. drink, Gu, test kit for blood sugar if needed, cell phone, etc.).  Oh, I also think I will get a stop watch with big numbers to attach to the bar so that I can just look down instead of having to let go with one hand to bring my watch up toward me.  Letting go with one hand feels really unsteady right now!

Well, since roads really suck for me at the time, I send out a true Happy Trails!!!!

Missy

Oct 3rd, 2016

5 Comments to 'I can’t believe it has been over four months without posting an update!'

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  1. Sharon said,

    Missy,
    I have spent the afternoon reading your blog b/c my son-in-law is currently being evaluated for SPS. Lo and behold, in the process, I have found a kindred spirit in your posts.

    I, too, have a very rare form of a very rare neurological immune system disease (neurosarcoidosis) which was diagnosed at Duke in 2007. Our diseases may be different but our experiences are quite similar including the frustrations and the joys of dealing with the medical system.

    Keep fighting and keep looking for the positive but always allow yourself to be human and complain a little too. I wish for you bright days this holiday season with little pain and many laughs.

    Laughter is the greatest medicine and it is never denied by insurance < : )

  2. MissyFoy said,

    Thank you so much for writing! Yes, it is really hard to have your entire life up-ended by health issues! I am doing my best I think, and it sounds like you are, too. Fingers crossed that we both find some improvement and some peace of mind.

  3. Claire said,

    Dear Missy, it is so long since you posted. How are you doing?? I am almost afraid to ask but hoping you are seeing some lights at the end of the tunnel

  4. MissyFoy said,

    Hi Claire,

    I’m sorry that I have been lost in space somewhere for so long. It’s been a bit of a struggle to find positive things to say. One day leads to another, then another, and then it gets hard to get back into the habit of posting anything at all. I think I’ve also felt like I didn’t really have anything of value to offer anymore and that nobody would remember me as time went on anyway. I have recently been told otherwise by quite a few people, so I’ve decided that I WILL give it a go again and see how things shake out. I actually have been doing better since changing neurologists, working closely with my endocrinologist about several issues regarding dangerous dosing of prednisone that put me into adrenal failure, and getting some much needed help from a pelvic orthopedic specialist for what seems to have been a bone marrow reaction to a medication that a neurologist put me on. I am doing much better on some fronts, but disease progression continues on other fronts. I guess that’s to be expected.

    I do want to say thank you so much for your note of concern. Yours, along with some on the email address attached to my website (missyfoyruns at gmail dot com), have been so appreciated!!! Being sick can get lonely and depressing, especially when the illness involves pain. That gets tough. I always thought I had a high tolerance for pain (and I still think I do), but day in and day out, combined with spikes that make me nauseated, gets to be too much sometimes. Okay, enough down, poor me stuff! I am fighting back and gaining some things back, particularly my aerobic fitness. I cannot tell you how happy that makes me! I can go for long periods of time working out now usually. The “monkey wrench” is that I cannot predict when one of those workouts might be interrupted with seizure-like spasms. It is the same reason I can’t work any longer. It is just too unpredictable and then takes a long time to recover. Plus my treatment schedule is complex and time-consuming. But, hey, it’s helping!! That is one thing we find out when sick – we really can do what we need to do!

    Again, thank you sooooo much! Missy

  5. MissyFoy said,

    Thank you so much for this note to uplift my spirit. I have read it several times and it just catches me how kind you are! Thank you! It is very frustrating at times, yes. I made a few changes and they have helped a lot physically, mentally, emotionally, and spiritually! yay! I hope you are doing well, Missy

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