Saturday, June 25, 2011
Since we left this story... I am still wearing the "event monitor" and have found some interesting patterns with my heart rate. It definitely gets too high with ANY movement at all... it gets too high after eating... it stays at the high end of normal when I'm completely at rest.
I got a phone call from my regular doctor about the blood work that the pain doctor ordered on my birthday (yes, two months ago). When I saw the regular doctor on June 10th, she asked what they had tested for in that blood screening because she didn't have a copy of it. I told her I thought they were just ruling out lupus and rheumatoid arthritis. When I saw the pain doctor on June 13th, he noted that he didn't have a copy of the lab work in my file. He agreed to notify my regular doctor of any findings. SO yesterday (after two months) my doctor called with a bit of urgency in her voice and said my vitamin D levels were drastically low and they were calling me in a prescription dosage of vitamin D to take once a week for 16 weeks in order to bring those levels up.
This is particularly interesting because vitamin D is the ONE supplement I regularly take (because they are chewable orange flavor and taste like baby aspirin)... and I discussed this with the pain doctor on my last visit. He said this was a good practice because vitamin D is particularly helpful with osteoarthritis and controlling inflammation... it also helps lower your blood pressure. I'm grateful that I was already on the right track with that supplement but highly perturbed that it took two months for any action to be taken regarding my blood work. I mean... do they figure that because I'm now diagnosed with chronic back pain that there is no rush to make things better?
So anyways... got my vitamin D today and was able to finally get the neurontin refilled. After trying lyrica for a week instead of neurontin, I have to say that my pain levels were much greater this week on the lyrica... but I also worked a full work week this week (when I unfortunately, usually have at least a half day that I'm UNABLE to work). I was so incredibly uncomfortable by yesterday afternoon BUT... I did note that my heart rate is NOT increasing when the pain increases so there is not a connection there as we had previously assumed.
I think when this is all said and done that I'm going to become some kind of patient advocate... a "doula" of sorts for people with chronic conditions. There should TOTALLY be some person who can go to the doctor with people, help with medical research and diagnosis, be familiar with appropriate measures to take, etc. Maybe a case manager does that from a remote sense but truly, it has all rested on me to keep track of what has been done when over the past five months and it is - at times - overwhelming... and I'm a reasonably intelligent person with an above average understanding of medical conditions and diagnosis. What happens to people who are older, less articulate and able to comprehend this type of data. I seriously had to ask the pain doctor what my official diagnosis is... throughout all of this it's come to me in bits and pieces and it really is hard to keep it all straight.
In other news... I bought Austin a new phone, ordered it on the walmart.com website for site to store shipping (which I love, by the way, since walking all around walmart hurts... and the site to store stuff is at the front of the store) Anyways... I bought him an awesome phone out of his child support the other day. It was less than $30 and it has all the internet capability he wanted, it has an MP3 player, a radio, is completely app capable... really all the bells and whistles he has wanted. One problem... it was a Net10 phone and his current plan is Straight Talk. The Straight Talk is a month to month plan - no contract - but he has ten days left on his month. The phone number is transferable but the service is not. So... poor kid... he has to wait to have his brand new mack-daddy phone activated and you know what he said? "Some things are worth waiting for"... man. He is really growing up.
One other thing I just remembered about the vitamin D... in my research about vitamin D deficiency, I found that it can cause cravings and weight gain. So maybe... some of this that I've been blaming on the meds can be attributed to this vitamin D problem. My levels were less than half of the lowest acceptable level.
Or... as my co-worker said, "it's because you're a mole... you don't go out in the sunshine". True story.
And I won't be out in the sunshine today either... it's too hot.
Anyways... about to grab a power nap. Hope you're having a great weekend! love and hugs!
Posted by Heather at 12:44 PM