Thursday, March 1, 2012

Boring Details Medical Update

"If you don't like something, change it. If you can't change it, change your attitude.” ~ Maya Angelou

I wear two pieces of jewelry these days; my engagement ring and this silver cross that Chuck gave me a month after we started dating. I had to take it off for my MRI yesterday and I gave it to him to hold. He took this photo in front of a snowy window in the MRI waiting room. Is it no wonder why I love him so?

I am a firm believer that the only way through hard times, pain, and suffering is through it. Not around it. So when this week approached with its nine plus appointments, multiple medical tests, and constant hourly changes in my schedule, medications, and therapy, I made a firm decision that I was just going through it. I knew it was not going to be easy, but my approach was one hour, maybe even one minute, at a time.

So far it has been an insanely busy week. It is a huge struggle when you feel like hell physically to get yourself showered, dressed, and prepared for one appointment after another; meanwhile trying to keep track of your other responsibilities such as who's going to care for your dog, how you're going to get places, getting the times right, eating, resting, etc. Throw in a few inches of snow for a messy commute and well, you get the idea....

So here's the deal. I started physical therapy on Monday and will be going twice a week for a few weeks at least to start with. I was disappointed because my therapist was pretty focused on my lower extremities which at this point, are not the biggest problem; my upper extremities are. I am not 100% confident in his experience but that could be because he looks like he is fifteen to me. I will try and reserve my judgement until after another session or two and then if I feel he is not the right therapist for me, I will request someone else. The evaluation itself exhausted me and I am not sorry that I cancelled for today. I have exercises for home meanwhile.

My blood clotting labs are down (they should be higher) probably due to being back to eating green veggies again like I normally do. So they upped my blood thinner dose but now I am on a regular eating routine so hopefully this will straighten out at my next blood draw. At least no more injections. I still cannot wash my belly without discomfort because of the nasty large bruises. I am wearing my own pants now though. Elastic waistbands only but at least they are not Chuck's!

My appointment with my pulmonologist was almost a three hour ordeal on Tuesday as I had to have breathing tests done and then he got called into an emergency procedure so he was an hour and a half behind. I think I handled that very well to be honest. I know that he also runs the intensive care unit at the local hospital and despite his best scheduling, sometimes these things happen. It is a small price to pay for seeing such a fantastic doctor. He truly looked stunned when I explained all the things that had happened since my last appointment. It was kind of funny to see a professional's reaction to all of the recent events.

Because of all the steroids I have had, I rocked my breathing tests. Like textbook perfect, despite the blood clots in my lungs. While I am still on the steroids, I get to come off one of my inhalers, at least for now. Yay me! We reviewed the CT scan and I got to see my little blood clots live and up close. It was a touching moment.

OK, not really.

He thinks because I had another blood clot in my leg years ago, it does not look good for me getting off the blood thinners (Coumadin) in this lifetime but we will let one of my newest specialists (the hematologist) decide that when I see him next month.

The concern now is that despite my asking about this in the hospital, there was not an ultrasound performed of both my legs to see if I am regularly throwing blood clots or if this was just related to being immobile from the Guillain-Barre plus having a clotting disorder plus the possibility of the Sjogren's playing a role. So we are doing that this Friday. I asked him if we really wanted to go looking for more trouble. He laughed and thought I was joking. I was not. But I know its important so off I went to acupuncture for the first time in a bit to see if it would help with my stress but unfortunately, a phone call from my long term disability company an hour after I got home from acupuncture pretty much negated any positive effects I may have had from that session.

Yesterday found Chuck and I in Hartford with my neurologist. It started off pretty bad because I had been so sick with these awful headaches in the back of my head; the ones which landed me in the ER last Friday. The drive down made me nauseous and I was having more weakness in my legs and arms as I was so sleep deprived. Apparently Guillain-Barre symptoms can wax and wane for a while, especially if you are sleep deprived. Neuro doc did an EMG which is not a day at the park but tolerable. I'll spare too many of the details. After a series of nerve conduction shocks and a round of sticking needles in my muscle which lasted about a half hour or so, she said the test looked normal. What this means is that it did not show any permanent damage that she could find but I do have (had) Guillain-Barre. A positive test result would have been helpful for her to see more what is going on but a negative one doesn't disprove anything; if that makes sense. I say any day you have a negative test is fine by me.

Had an MRI of my cervical spine that afternoon which the hospital graciously moved up from late afternoon due to the inclimate weather and us being over an hour from home. That was the test I was least worried about from a pain standpoint and it was awful. Because I have been having neck tremors, they were having a hard time getting still pictures and told me I couldn't swallow or deep breath while the scanner was going. The test took an hour with minimal breaks. Ugh. I do deep breathing to help manage my claustrophobia in the MRI machine which then I couldn't do but I have to say I did pretty good. Until about ten minutes or so before the test ended. I had been laying perfectly still on my back, on a head that was killing me in the back, and the pain was more than I could bear. I just let the tears come without moving my damn neck; but it was pretty painful.

Luckily, the neurologist and I had discussed these sudden headaches and she put me on a pain medicine that is specifically for headaches and shouldn't keep me wide awake all night like the one I was taking. I had it filled at the hospital pharmacy so was able to take a dose right after the MRI before Chuck drove us home. She is not sure what is causing these headaches. I have had some in the past with Sjogren's flare ups but very different from this. The concern is the neck and arm tremors that I am still having which are better but still there. Although she think the tremors may be Guillan-Barre related, she does not think the headaches are. It may be as simple as stressed induced migraine or tension headaches which I guess can be pretty bad. They did start right after I found out about the blood clot and Guillain-Barre diagnoses so who knows. She also thinks the lack of sleep for the past two months while being on steroids could be a trigger as well. The plan is to get MRI results to me by tomorrow at the latest and see if this new headache medicine is helping which so far, it has helped quite a bit. It also knocks me on my ass. No complaints there; slept four straight hours last night. That was a miracle.

Unfortunately, the neurologist also feels that I should have that last steroid infusion because of all the neurological issues I have had so we wandered over to my rheumatologist's office and left a message about setting that up and I am expecting to hear about that today or tomorrow as well. And I got a follow up appointment with my rheumatologist finally which is no small feat whatsoever. So much to think about. So many more appointments.

So that's the scoop so far. I still shake like a leaf sometimes, have nasty headaches, and am exhausted all the time. Today my body is just yelling "enough" and since I cancelled PT, I think I am going to just keep things as low key as possible and do some more healing. My body still feels so broken. Maybe some cooking. Definitely some snuggling with the pooch. And plan my next round of appointments for next week.

I have been really blessed this week with people helping us out with a few meals, checking in on me, giving me a ride when I need it (although I can get to Noho by myself now!), and especially in regards to watching Molly and getting her some exercise. Trust me, you never know how much those little things can add up and make crap like this so much easier. I have also been able to stay on my eating plan despite this crazy schedule and stress and not only am I proud of myself, but of the people who have supported me in that endeavor. I will be a much healthier person because of it, one way or another...someday!

Speaking of someday, don't worry...we haven't forgotten that we DID get engaged and that there will be a wedding. You just never know what kind of plans get made in waiting rooms....   ;-)


  1. That photograph is beautiful. I'm so sorry that you are going through all of this, and I hope that you get some helpful answers soon!

    1. Also, Liebster (blog) fever is spreading. I know that Sjoggie StaHMer beat me to it, but I just couldn't leave you off of my Liebster blog list!

  2. Reading your blog takes me back to a year ago when I was, in a lot of ways, in the same place. My hearts aches reading it because I know how overwhelming the whole process is. You amaze me with your strength - which also includes the ability to admit that, some days, you're not feeling so strong. That's where God, Chuck and all those who love you step in. May you have a day of rest, healing and some pleasant distractions. Love you.

    1. I love you too. Thank you for being such a blessing in my life...

  3. You make me speechless and that is hard to do!!!!!

  4. Now I want to know who I made speechless; such a tease! :-)

  5. You've been gifted with an award! You can check it out here...

  6. made plans???

    1. We made "thoughts"....its a start. "Plans" go through our minister first..... :-)