Saturday, October 20, 2012

As "Tis" the Season surrounds us so quickly...Trials, Illnesses, & New Heights

Lots of things going on in all of our worlds now. From the hustle and bustle of what the Fall and Winter Seasons bring, football games, kids back in school and college, thinking about the holidays, which all seem to roll into one another, rather than be separate as the used to be... It seems Halloween, Thanksgiving, Christmas and New Years are now portrayed together at at once in our retail markets. You look around all of the wide array of stores, and there are all of the above holiday "themed" supplies sitting beside one another, or across the isle's from each other. That seems to be the "theme" of our lives now... hurry, hurry, hurry... no time to waste... not a moment too soon... not an hour of rushing but a lifetime of flying through the years, and one morning you wake up... half of your life "over" with, and you wonder where all of those years went to. Your kids are grown, and they have children of their own. Your teenage years, your roaring "twenties", those prosperous 30's, and those "wiser 40's".... all past as you head to that "half century" mark. When you suddenly one day look in the mirror and realize you are 50 years old, Then you also begin two wonder what the hell you have done, why the hell you did what you did, and did not do what you thought you would... why time is so fleeting, and the days seem to rush by much quicker with each year you progress to that "senior" citizen moment. Days seem to be shorter, energy shorter, and often you find yourself in a wonderment, of what if, I had done, this, that or the other... how would my life be different??? Should I have gone to college, or married earlier, or NOT married, or had more children, or skied, or went on all of those splendid trips and adventures I wanted to. Was the money I made worth it??? Did I need 12 new cars and 3 new homes during these past years???
Then you start to dwell on what shall happen now. What will I do from now on? am I "too old" for this, will I survive another 20 or 30 years or more??? Should I now take those trips, or sell my home, move, or go back to college?? Should I learn a new skill, a new hobby, or find a new way to look at my life??? Shall I volunteer to help others? Or be a voice for a certain worthy cause?? thus, you then are wondering about the future, and yet also thinking about what the past was also. You often find that you meet yourself in the middle. You start settling into those "Golden Years", and find they might be even more "Golden" than you ever dreamed. We tend to think life is over by the time we are "50", or "60" or maybe you feel like you may JUST see 100... that century mark!! and beyond!
There are so many changes we go through during certain times during our lives. We begin to realize we are not as "spry" and "young" as we once were. Either our memories are not as good, or we feel more "feeble" and less "steady" on our feet. Maybe we deal with more pain physically, stiff joints, and arthritis setting in. WE sooner or later, and sometimes sooner see that all of that "rough and tough" stuff we put our bodies through in our twenties, come back to slap us hard when we are older.
Although we all go through these feelings, emotions, thoughts, and then the physical aches and pains, almost as if we were again having "growing pains" but a type of growing pain to "get mentally" prepared to accept that you may not be able to do as much, or at least do as much as quickly as you used to. But, for those like myself who have already felt in their early years they had already reached those "older times" of their lives, due to chronic pain and illness, we tend to go through much more of almost a "denial" of aging. We sometimes "fear" being older simply because we have already felt those "aches and pains". We are already suffering health issues, that more often are suffered by older people than we are. If you have dealt very long with chronic pain, then your life has been totally different for a long time. If you suddenly find yourself with Lupus , FM, RA, MS, or other chronic illnesses such as diabetes, Sjogren's, Raynaud's, osteoarthritis, Degenerative Joint and/or Disc disease, and the list goes on, then those fleeting years of back when you were "well" have been gone what seems like forever to eternity.
We tend as those with disabilities due to these illnesses tend to feel more guilt, more trauma, more anger, more anxious.. worrying about how the years coming will be. Will people understand? Or will be be shunned by the ones that are supposed to love us unconditionally??? We all too often live trying our best to hope that those that know us will understand. But, we also live trying to convince ourselves that we are ill, and that we cannot help it. We try rationalizing each and every thing we do, and all of the things we may not be able to do, due to the disease, in all types of different ways. I know for myself just telling someone, "I don't feel well today", probably sounds pretty lame for the just every day person. If they do not have an understanding about the chronic life altering, challenging illnesses and syndromes, there is often no way they can truly get the jest of just how badly we feel on some days. For instance, a person can have a bad couple of nights and not sleep well. Then maybe they also have a rough couple of days along with those nights. Thus, you are going to more than likely feel "lousy", run down and fatigued. Yet, when I feel the "fatigue" of of Lupus coming on, I mean a "bone tired" body dragging, almost unable to function fatigue that just completely knocks you on your ass possibly for days or weeks.Along with the fatigue, a "flare" usually arises. That flare maybe "minor" with a few symptoms. It may only last a few days and be gone, until the next one. OR it could be a major flare, that sends me reeling into low grade fever, the bone tired fatigue, severe joint pain, which could be a few or ALL joints, a rash where mine appears to almost look like "blood blisters" on my arms especially, brain fog, not able to concentrate, also the hallmark "Lupus" Wolf rash on my cheeks and across my nose that appears like I have a sunburn, what I have a "Lupus migraine" that no amount of pain medication can get rid of, only a corticosteroid injection to bring down the inflammation of the vessels in the head, plus many other physically symptoms. Accompanied by the physical symptoms are the mental and emotional symptoms of these illnesses. Guilt, Depression, Fear, as I mentioned the "foggy" brain issues where you can't remember things, or possibly can't even remember a word you were trying to use. Most all of which are "minor" in nature above compared to when it strikes your internal organs. Many suffer from severe heart problems, lung and breathing, issues, kidney "renal" involvement is a huge problem, Lupus and these other AI illnesses also can attack the brain, making it even more complicated as far as thought process, or physically harming brain cells. Other symptoms are thrush in the mouth, horrible mouth ulcers, severely dry and chapped skin, the inability to stand a dramatic weather change, from heat and cold, to high humidity, to the barometric pressure making huge and very quick changes. Eye issues such as very dry eyes, and eye infections can occur. Severe sore throats and swollen lymph nodes effect me with almost every flare. My throat will be so extremely painful, that I use a special mix of medication that my doctors orders for the ulcers, the mouth sores, the sore throat, that can easy some of the discomfort. I have developed other health problems, that now as I look back and my doctors look back, we are in agreement that some of my earlier health issues that are now coming to light, are directly caused from my AI illnesses. Lupus is often an illusive illness, that many doctors do not understand, and they absolutely need to be able to spot this life altering illness by symptoms, X-rays, blood work is a huge one for some, earlier symptoms through life, and the patients education of what is happening by their own research and being in tune with their bodies, can often help to make an accurate diagnosis much earlier in life, where some of the horrible symptoms and damage may have been stopped or slowed down before it effects especially vital organs, and can cause death, especially when the damage is done permanently to organs before an accurate diagnosis can be made. As I continue on my journey, through the ever winding river of my life, through this blog, I hope I entertain you, bring you vital information, give you a reason for your own advocacy, allow you to possibly research and get a doctor that can help you, understand about disability and how to achieve getting it, how living with these autoimmune illnesses can wreck your life, or absolutely change some things for the good. My wish is that I give to you all of the information you need, along with allow you to look into my own trials tribulations, victories, defeats, and all of the "spaces" in between living with chronic pain and illness. May you feel lifted up, sometimes brought down, and most of all relieved to know you are not the only one.

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