A New Year, a New Life Change for Better Health-Taking Charge!

New Years resolutions  are easily made and easily broken. Usually they last a week or so. But to make a  New Life Change for Better Health and to actually get down to the nitty gritty, take control of your health care decisions, be more assertive and pro-active is a life long commitment. And if you have not done it by now what better way to start than by doing it as a fresh start to the NewYear!

I made the 1st step by finally taking care of nagging and persistant on-going pain that was nottotally migraine related and finally getting it checked it. At first it was just a little bothersome and I ignored it. Then it progressively got worse that by late summer early fall I could not ignore it anymore. Thanks in part to the great support from the patient advocates and other members at Migraine.com, I did some  research online and started putting the pieces of the puzzle together, adding up 2+2 to figure out that I must have Fibromyalgia. Thanks also to Dr. Marcus for basically reaching through the computer darn near to slap me across  the side of the head to say “duh”. Or at least she should have!. More sensative than prior years to smell, lights, sound, cold, heat. Constant chills, deep muscle aches and sore to the touch. I once enjoyed deep tissue massage but now it hurt like the dickens so I declared NO MORE of that.

My already sensative nose could now pick up smells like a bloodhound and drove me into more migraine fits. I had no idea that Migraine sufferers could also suffer from Fibromyalgia until late last year. Lots of lessons I have learned but lots more on the horizon I fear. My IBS that I was diagnosed with in early 2002/03 was under control with a strict non dairy and non soy diet was now out of control, and I was still on my strick diet. I was ticked but also alarmed until I discovered online that is part of the Fibro. And then when the painful bladder started I thought holy heck (cleaned up the language here) until I read that was also from the fibro. But the Cymbalta is suppose to help with that. So fingers crossed I took my 1st dose on January 8th that it works. My Gerd, also Fibro, seems better since I started this med and stopped the Remeron. Doesn’t work that fast, I know.

My Neurologist/Headache Specialist nor my MD came up with the diagnosis. With my Neuro we concentrated on my migraines which were driving us both batty, so in his defense I really didn’t complain about the complex body aches and pains and all that good Fibro junk.  I had to make printouts and go to my MD and take charge and say “look, I have all these symptoms, they are not migraine related and I seriously think I have this disease. Can you check this out and confirm it and help me and treat me for it? Well, this was in late November and my MD ran a bunch of blood work she said to rule out various other diseases
before she’d “officially” diagnose me with Fibromyalgia and then she’d treat me for it with Cymbalta. The lab messed up on my blood work twice and I have to go in a 3rd time for yet another blood draw for a SED Rate and Lyme Titer before she will even see me again to diagnose me and treat me! Needless to say I’m searching for another MD.

I saw my Neurologist/Migraine Specialist this week on the 8th. He was flabbergasted at the fact I’m not being treated. He said without a doubt with my symptoms and pain points I have Fibromyalgia no questions. He put me on Cymbalta. He said to go through with the blood work because the SED Rate is important and to have all the results sent to him.

But the point is that you don’t sit back and let any doctor treat you  with disrespect, or as less than a human with physical needs. Here I am in pain and suffering and I keep being put off. This makes the 2nd time they called to cancel my followup appointment because of botched up lab work that is not my wrong doing, but yet my “official” diagnosis and treatment is on hold and being held hostage because of lab error and a doctor with rigid inflexible standards and will not take a person suffering into account and help them out in the interim.

But my goal other than to find a competant MD is to work with my Neuro to get off of some of these meds. He took me off of the Remeron right away and is weaning me off the Amitriptyline so I will be off that in a week. The Tizanidine will be taken PRN as the Cymbalta will take the place of those 3 medications. But I’m hoping after I’ve been on that med for a while I can be taken off the Diazepam.

I will continue to research online and if I find treatments or medications that sound promising that I’d like to try I will print them out and take to my neuro, like I have done in the past, and we will discuss if it’s right for me and if this is the right time to try it or if not to put it away for a later date or if he doesn’t like it he will tell me why and we will debate it until one of us gives in or we both come to an agreement. At least with him I can talk to him because he is willing to listen, he’s open to my ideas and input as I’m open to his. We have good communication. I just wish I had found him 25 years ago. But I cannot look a gift horse in the mouth. At least I have found him now all thanks to my therapist-she referred me to him and I cannot thank her enough.

And then I have to learn all there is to know about Fibromyalgia now as this is a whole new kettle of fish to me. I have to  start very slowly on an exercise regimine to control the pain and the very  intense muscle spasms. Night before last I woke up in the middle of the night with the most severe muscle spasm in  the calf muscle. It would not go away. I tried to stretch it and it spread to my hamstring. I laid on the floor to do the hurdler stretch and I was about ready to cry when the bottom of my foot started  to cramp. Yipes! I took a Tizanidine, used hot pads, that morning took a few hot Epsom Salt baths. That leg and foot hurt for a good 24 hours. Yes, I need to start a slow and steady exercise program to make sure that does not happen again.

I have always eaten fresh prepared food made from scratch. I cannot eat anything prepackaged or premade due to chemical sensativities. But I do need to cut back on simple carbs and eat more complex carbs and more fresh veggies and fruits. If fresh veggies are not an option I can go with frozen. I need to stay away from canned to watch the salt intake. I have to limit my meat intake to once a week. I eat a lot of boneless skinless chicken breasts but I have committed to eat more grilled or broiled fish. We got some Salmon fillets and divided them up in portion sizes and froze them. Finally they had a sale on them. Got some other fish as well but Salmon is my all time favorite. I grill all year round, even when it snows. But I draw the line in a snowstorm so then it’s under the broiler in the oven.

I need to meditate more and get more peace and tranquility in my life and try to push away the stressors. If I cannot remove the stressors I need to find better coping mechanisims. I need to see my therapist more often. She has offered to do sessions via Skype for when I cannot drive due to visual aura’s or disturbances so I’m going to have to take her up on that. I need to have a steady anchor in my life that I can count on that can counsel me and keep me on steady level footing and help me cope with the insanity. And I also need to keep my depression in check, as well as my anxiety and OCD. Without seeing my therapist on a regular schedule I have seen how I have slipped back into old patterns of self-doubt, anger, resentment and deeper depression. I am sinking into the despair that put me into the hospital last summer and I cannot afford emotionally nor monetarily for that to happen. I do not want to admit defeat or failure or repeat the same cycle of self loafing and self hate. I must get this under control and do it fast.

I need to focus on doing all of the things above and by doing so I hope to get the migraines under control and the Fibro pain under control and then I can get my life back under control so that I can participate in life and the life of my family and friends. What I would love to be able to go out on the spur of the moment to the stores and go shopping, or go see a movie (taking ear plugs of course and a sweater even in the summer, brrrrrr) or on a road trip on a vacation as a getaway and not worry about getting sick and ruining everyones fun and my being totally miserable. Having an impromptu  cookout and inviting some friends over or family. Or being able to keep up on the housework for a change instead of having the housework bear down on me and seem like a Mt. Everest that I cannot conquer.

This is my New Year, New Life Change Game Plan for Better Health. My Take Charge Initiative is not a New Years Resolution because on this I cannot falter because these diseases will be with me for the rest of my life. And if I fail on my Game Plan and Life Change I will only become sicker and not better. And only God knows how sick and tired I am of being sick and tired! I want to feel well again! I know I cannot regain good health and be 100%, but if I can get 50% I’ll be happy with that! I try to think of the glass 1/2 full. Thinking positive thoughts will bring about positive changes.

Oh, and by the way-Happy New Year.

Stay Happy, Healthy, Peaceful and Safe
Sincerely
Julie

ps
I just got in the mail a survey form for my MD. Hmmmmmm, this should be very interesting how I fill
this out. Got a gut feeling she won’t be getting 5 stars from me, ya think? And neither will the affiliated lab for that matter.

 

DISCLAIMER: THIS SITE IN NO WAY GIVES MEDICAL ADVICE OR DIAGNOSIS. SEE YOUR OWN PHYSICIAN FOR ANY CONCERNS OR QUESTIONS YOU MAY HAVE THAT ARE MEDICAL. THIS SITE IS TO JOURNAL AND BLOG ON MY “OWN” PERSONAL EXPERIENCES AND WHAT WORKS FOR “ME”. THIS DOES NOT INDICATE IN ANY WAY THAT I SUGGEST THAT OTHERS MUST FOLLOW MY THOUGH PROCESS OR MY WAY OF DEALING WITH CHRONIC PAIN. THIS IS WHAT I HAVE FOUND TO WORK FOR “ME” IN THE 25 YEARS I’VE BEEN DEALING WITH THIS CHRONIC CONDITION AND HOW I FOUND A WAY TO COME TO TERMS WITH IT. YOU MAY OR MAY NOT AGREE-THAT IS YOUR CHOICE. BUT I AM STRESSING THIS IS WHAT WORKS FOR “ME” AND I’M ONLY JOURNALING TO INFORM MY PROCESS ALONG THE WAY FOR “MY” BENEFIT AND FOR ANYONE THAT WANTS TO LISTEN. NOT INTENDED TO BE A LECTURE FOR HOW OTHERS SHOULD DEAL WITH CHRONIC ILLNESS OF ANY SORT.