Yet, I also fear the holiday season. With each passing year, and especially this one, my physical health has failed even more. I see the hundred's of things I want to do, to be ready for the joy of the season, yet when I think about what I need to do, I go into overload, hoping and praying the Fibromyalgia, Lupus, CFS, and the rest do not get me so completely down in a flare, that I will be unable to enjoy the baking, shopping, cooking, decorating, and my family.
When you have something that is a chronic illness or chronic pain, even though you fight hard to not allow it to rule over your life, you come to find quickly, even with good stress, it can kick you down the mountain very fast, and leave you in a crumpled heap on the floor, until you can once again find the energy to force yourself back up the mountain. We have had a very difficult year in many ways, along with some good things also. My Lupus, and now Fibromyalgia has brought a whole new array of tests, doctors, and honestly new symptoms that are really at times getting me down and out. I find myself much more fatigued most days, I am slower at things I used to be fast at, and with the extensive and severe bruising all over my arms and legs, I feel embarrassed to go out in public, due to all of the looks and stares I get. I feel as if people think I have some kind of contagious disease like Leprosy or something, when I see the fear in their eyes. Now, the dermatologist seems to possibly think they could get much lighter, but it could be years, and even now, all we know it is it NOT skin related, but it is something to do with my blood vessels and it petechiae and purpura. Thus it is still a mystery, and between what the doctors have said and NOT said, Jim and I have a theory about the severe bruising. For one, we feel after much research, the Lupus itself is causing part of the issue. Lupus tends in some people to attack the blood vessels, causing them to weaken and "leak". Which makes sense, because the type of Lupus I have, can attack any type of connective tissue in the body, from the heart, lungs, kidneys, brain, skin and of course blood vessels. Secondly, the very medications that are helping to try the "wolf" at bay (Lupus means wolf in Latin, since one of the symptoms is a "butterfly" rash across the cheeks and bridge of the nose, making it appear like the "mask" of a wolf.) One of the medications in particular can weaken the vessels also, but it also thins the skin, so I am easier to get scratched, easier to bleed, and it takes longer for me to stop even a small wound from bleeding.
But, as the dermatologist said, it is NOT worth possibly making my Lupus worse by getting off the medications. I need them to keep the Lupus from causing further health issues, and even at that I still could develop more organs involved.
So, after all of my year plus research, I am adding yet more pills to my daily routine. But, this time I am adding more Vitamins and Supplements to the mix. The 4 I am adding are highly recommended on many of the huge Lupus support foundation sites. None of them are harmful to me, so I want to take a chance to see if they can help. Also, after much research on Fibromyalgia, I decided to try the Fibromyalgia/Guaifenesin Protocol. For some reason doctors have found out that Mucinex DM (the Guaifenesin) helps to lessen some of the symptoms of FM and CFS. It also is not harmful, so I have added it to the mix also.
I am keeping a daily very detailed journal of what we have added, what changes I have made as far as lifestyle as of lately, what the doctors have said, done and not said, nor done. We intend on arming ourselves with several pages of everything I have been through as far as tests, doctors, blood work, etc. along with my medications, and everything I am doing, so we can take it to my Primary Care Physician, who by the way honestly is the only one that really seems to care about what is going on with me, and he is more versed in many ways about Lupus, FM, and CFS than he darned specialists! WE intend on sitting down and having a consultation with him, and see if between the 3 of us we can come up with some type of "game plan" as to what to take, don't take, do not do, and so forth. Jim and I feel since he is very willing to listen, then give his sound advice, that we may be able to fight these Chronic Illnesses much better, and get my flares more in control.
Okay, I shall stop for now.... I hope the feel of Fall and Winter bring you much joy, and anticipation of family, food, friends and most of all... Love...