Taking Charge

I went to see my primary doctor today. We had a good chat about everything and anything that has transpired over the last 2 months since my last appointment with him. There was quite a lot of information to give him. From my adventure with facet joint injections in my lower back to swine flu. I was very up front and honest and told him that I needed him to listen to me. I told him that these medicines for this disease aren’t working for me. They are actually making me sick with other things that are requiring an additional medication to help with relief. My body is becoming septic and turning on itself. I refuse to have to take medications for every little thing that crops up. I will not be medication dependent. That is insane!

He told me that sometimes doctor’s couldn’t cure things and sometimes in their eagerness to try to help with the cure, they inadvertently do the opposite. The smart ones back track and try a different method later. He is taking me off the meds for right now. Praise God! He said he wanted to see me back in a month and we may try a different route. I do know that right now, this is the destination to go. I also realize that with this decision it will bring me back to the living hell I have experienced the last 13 years of my adult life. Better the devil you know than the one you don’t, right? I least I can look this one in the eye, grit my teeth, and keep my mouth shut daily about how I really feel. Masks I am good at.

- Gigi

Egad, I have become a stereotype

I was chopping vegetables last night when I was suddenly overcome with a frig-awful pain in my shoulder and neck.

Afterwards I thought of that TV ad for Fibromyalgia and thought oh god, i’ve become the fibromyalgia woman! I would have laughed if I hadn’t been crying.

I lay down for a bit once the veggies were cooking but the pain got worse, going up into my jaw, face and scalp. When the dinner was ready and served up to the kids,  i jumped into a hot shower, then rubbed deep heat in, took ibuprofen, drank hydrolyte and went to bed. Quick chat with sidekick then tried to sleep. The fibro-lady tried to sleep.

Potential Chronic Fatigue Syndrome Breakthrough a Reminder of 'Patient No One Listened To'

By Shawn Kennedy, MA, RN, AJN interim editor-in-chief

by obo-bobolina/via Flickr (Creative Commons)

The other day I saw a news report from Reuters noting that a study in the journal Science found that a retrovirus linked to prostate cancer may be implicated in chronic fatigue syndrome (CFS).  The report explains that researchers “found the virus, known as XMRV, in the blood of 68 out of 101 chronic fatigue syndrome patients (67%). The same virus showed up in only 8 of 218 healthy people (3%).”  The hopeful take-away message is that IF this virus does have a role in the development of CFS (and that’s still to be proven—all that can be said now is that this study found it to be predominant in people with CFS in comparison to those without CFS), then researchers can develop medications to treat this disease.

But what I took away was a different message.  I remember when CFS was considered one of those nebulous, often self-diagnosed syndromes that led health care providers to attach some skepticism to whatever a patient who claimed to have one of them might say. There have been other diseases or clinical problems that have been dismissed by clinicians only to be verified later—fibromyalgia, restless legs syndrome, and “chemo brain” (the cognitive difficulties that often occur after chemotherapy; though a complaint of patients since the 1970s, it has only recently been verified by research) come to mind. There’s also another one, Morgellon’s Disease, the existence of which is now being researched by the CDC. 

We’ve finally accepted the premise that pain is what the patient says it is.  Why shouldn’t that extend to other complaints?  Why is the burden of proof on the sufferer?

As clinicians in an evidence-based environment, we look for physiologic changes that can be screened, measured, palpated, auscultated, and monitored—we want to see or verify symptoms for ourselves.  If you practice long enough, you’ll have at least one story about “that” patient who no one listened to—the one who, regrettably, someone should have listened to.  Do you have a story to share?

TORTOISE-LIKE MOVEMENT, BUT IT'S STILL PROGRESS!

DAY 36, 37 : It may not always look like my health is improving, but like a tortoise, I am still moving forward.

When Greg and I were in Spokane, he commented how we were here ten years ago. I replied, “ I just don’t remember much of that trip.” He smiled and said, “That’s because you spent most of that time in the hotel room, You were sure ill.”

We had driven with our daughter to Spokane for her to play in a basketball tournament. I did my best to watch her play if she had games in the morning. I do remember when another player ran into her and broke her collarbone. I remember Greg concerned whether I should be going into the hospital with them but I was determined to be with her and God gave me the strength to do that. It’s funny, but during these years of illness , I often don’t remember much about where I was, but I will have strong recollections of how I was feeling. When I relive how I was feeling in the hotel room in Spokane nine years ago, I am grateful for the health I have now.
On Tuesday morning, I was able to walk slowly through the Riverfront Park. The weather change had affected the pain and stiffness in my arms and legs, but I was still strong enough to take this stroll. And even better, after my afternoon nap, we had a great meal at a restaurant called Moxie – which we thought was the franchise restaurant Moxies, but the food was even tastier. Then we walked across the street to the Fox Theatre that was built when ceilings were ornately decorated as well as the walls. We sat down in our seats, the lights turned down, and only the  stage was lit. Bryan Adams walked onto the stage while carrying his acoustic guitar and he began to sing song after song. Occasionally, a pianist would sit at the grand piano and accompany him. I just sat there overwhelmed by gratitude that I could be here since yesterday it looked rather doubtful. And here I was sitting beside my terrific husband who leaned over and kissed me after a beautiful ballad! And as I enjoyed listening to the music, I felt such peace and certainty since I knew that my health may be moving forward like a tortoise, but it is still progress! After the concert, we walked back to our car that was parked at a meter. As we sat in the car, the truck in front of us slowly backed into us and pushed in the grille. Even this incident could not dent my optimism.

my list

I’ve been pretty sad the last few nights. I’ve tried to keep it to myself, but I love to write about me…even if there is nothing interesting to write about.

When I think about all my illnesses…I feel overwhelmed, sad, manic, tragic, angry, revengeful, pissed off and in general FUCKING PSYCHOTIC!!!

*  Since 11 1/2, I was diagnosed with Vitiligo…and with that comes a weakened immune system.

*  Shortly after I was diagnosed with Depression and GAD (Generalized Anxiety Disorder.)

*  Skip ahead to my mid-20’s and I was diagnosed with Severe Depression and Anxiety, Agoraphobia, OCD (Obsessive Control Disorder) and Panic Attacks.

*  In my early 30’s I was noticing something not right; feeling sick all the time. Around the age of late 32 or early 33 I was diagnosed with Fibromyalgia, Chronic Fatigue Syndrome and unbelievable Insomnia.

*  Ages 33-present, I’ve suffered from horrible allergies and allergic reactions.

In about a week I turn 35. I still have all the above issues, and I probably will till the day they shove me in the oven and burn it all away. The diseased mind, body, skin and central nervous system…all of me…is fucked up. Now wouldn’t you be sad too?? ;c(