Some May find my "Blog" a bit Different, so I want to give more of "me" to you...
I realize that my blog may be a bit "rough around the edges" at times. I would much rather tell it like it is daily in my life. I prefer not to "sugar coat" daily living with autoimmune arthritis, chronic pain, and health issues that almost control my every waking minute!
So, rather than try to sit here, and find ways to give people a look at what myself and my family go through in reality. Doing that to me, is giving you, as another victim of these horrid illnesses a chance to know it is "okay" to be angry, upset, have bad days, say what you feel, not sugar coat your own reality, not have to try and hide the fact that your life is also just a mess at times because these illnesses overtake every step you make.
When you have a flare, nothing is "nice". Everything "sucks". Life is truly Hell! So, I could write about my medications, or find anything else to sit here and say, but that would not be what I need to give those who are following me a "false sense" of the days when you feel like you've been run over my a train! Times when you are on your sofa, or in bed, wishing you could have a break from pain, fatigue, shingles, mouth ulcers, rashes, stomach issues, kidney problems, medications that cause side effects, and this list goes on and on.
When these Autoimmune Diseases decide to enter your life, nothing, and I mean NOTHING is the same!!! You have to "adjust" your life in all ways. There are things you can't do sometimes. Like go out with the girls shopping, or meet the guys after work for a beer. Family get togethers, may find you smack middle in a horrible flare, or worn down from a new infusion, thus you feel guilty yet you feel like you will just have to sit this one out, (probably more like lay this one out). Your "normal" routine of life is completely turned upside down. Often you wake up with pain, and stiffness, that makes you have to take additional time to get up and get going. You find yourself slower at everything. It once took me about half an hour to get dressed to go somewhere. Now I better start at the very LEAST 2 hours ahead of time. Sometimes more than that, depending how I feel that day. You may not have the strength to do laundry, vacuum, dust, clean the bathroom, and make a fabulous dinner. More than likely if you get a couple of things done, and a meal on the table, that is a "good day". Shopping becomes a living nightmare. If you have a huge market or are going to a large store such as "Wally World" by the time you get in from the parking lot, you feel as if you walked a mile. Then if you are truly shopping with an entire list of things, that means "hours" of going through that humongous store!!! Then if no one is with you, that means taking that entire basket full to your vehicle, loading your purchase into your vehicle, and then trying to put a basket somewhere hoping one of their places for baskets is close!!! Plus, I bet many of you have this happen... I have a "disabled parking" plackard. My orthopedic surgeon wanted me to have one when I went through all of those knee replacements, then just all of the other illnesses, shoulder replacement, neck surgery... so I have one.
If you are not absolutely limping, have a crutch, or in some way look "disabled" boy are there the "looks" that you get from others!!! Thus the business about you do not look "disabled" or sick! Now I am one that uses mine sometimes, and at other times I park in a regular spot. If I am alone, and I am there to buy a large bill of groceries, or I am in a flare, not well, weather truly bad, I use mine. But if my husband's with me, or I am feeling okay etc... and especially if there is only one left, then I just ry to park in a normal spot so someone else can use it.
There are so many ways our lives are different. Some of those differences are just almost too difficult to deal with. Vacations you may miss, your hobbies that you used to love. I have a dear friend who loves sports. She used to play baseball, softball, and loved so many sports, yet RA has damaged her wrist and hand, thus that ended her ever playing ball, or other sports she so loves again. I hear story after story. For me, things such as running, snow skiing, mowing my lawn and doing yard work is out of the question. Bless my neighbors heart, he sees I've bought plants, or need to weed the flower beds, or mow, and he insists on doing all of it, and never wants to take a dime for helping. But I know he and his wife and two kids have a difficult time making ends meet, so I always give him money and tell him it is "for the kids"... LOL Then he will take it. :)
Sometimes we see family and friends all but disappear from our lives. It could be for several reasons. One might be there are those that just don't do well around someone who is "chronically" ill. Not in a bad way, but they can't take watching you in pain and suffering. So, they tend to not be around as much as they may have been. Others are just "busy". Since you have "slowed" down, and they are still in that "run, run run" mode, they don't want to be slowed down due to your illness. It sounds horrible but I know it's true. Others just fear the entire ordeal. Either they "fear" it is contagious (sounds ridiculous, but I had someone ask me if it was), or they fear it will cause them to be in a "mental anguish" if they see you in a state of illness. Some are in disbelief that you are that sick. Some family and friends are in "denial". They feel you are making all of it up. They feel it is just like, okay so your knees hurt, or your wrists hurt, well others have "arthritis" & they are up and doing fine. Some think you are a hypochondriac. And that if you would just stop all of those "harmful medications" and take vitamins, eat "right, exercise, you would "feel better". Or there are those that every thing they see online or on the Television they think it is what you need! My Mom is bad about that? She doesn't sleep, so she watches those stupid "info-mericals" all night. Then when I go over to her house, she has all of these names of rubs, pills, etc. that should "help me". So, I have to come home, get online, prove to her the stuff is pure "quackery" and let her know none of it will help me, nor anyone else! Bless her heart, she is still in that "zone" due to her age, that every thing she sees, hears, reads, she totally thinks it is the truth! She gets phone calls from sales telemarketers constantly. She used to listen to them6, and believe every word they said. I had to put a "no solicitors" sign on her front door. Again she was constantly bombarded with people trying to "pave her driveway", or "insurance her water pipes", or "save her money on her Electric bill".
Speaking of my Mom. I am here to help her. I am an only child, thus I feel it is my responsibility since my Dad passed away in 2005 from complications of a knee replacement. She was and still is in many ways completely clueless about the world. Even small things like using a "debit" card, or putting gas in her car, calling in a prescription refill & putting it in the "automated system". She would not even learn how to use a DVD player we bought her. Dad did it all. Bill paying, handling money and investments, from putting gas in the car, to mowing the lawn, or taking care of just about any and everything. Which was great, BUT he NEVER taught Mom how to do any of it!!! So, when he passed away, it was total chaos here. We did move here, from Seattle, so we both would be close enough to help her. Of course I was already in need of several surgeries, so my first couple of years here were spent in the operating room and recovering. I helped her until I finally got my total disability rewarded, then it I could finally get to the doctors I needed to get to. At the time though I had not gotten the "autoimmune arthritis" diagnosis. It became apparent as the orthopedic surgeon was in my knees, shoulders, and so forth that this was not some regular "osteoarthritis", there was much more there in damage than it could have done so quickly and so early in my life. It was not long after a couple of surgeries on my shoulder and both knees, that my PCP put it all together and diagnosed the "autoimmune arthritic" illnesses. I began to have all types of symptoms.
Back to Mom now that I've given you a bit of "history" about her. So, I also have to do many things for her. It is not usually a huge issue, but there are days, or even weeks that I am busy enough, or have a flare, that trying to take care of "me", and then trying to take care of the house, and then all of her things going on, becomes almost overwhelming. You would not believe the mess that I had to go through with her insurance and the surgery center to get her surgery bill paid correctly! I spent over 6 months trying to get the to "code" the surgery correctly so the insurance would pay. I was treated like trash, I was spoken to like I was an idiot, I was "lied" to, because for 3 months I was told the "supervisor" had to handle it, and she was "out" with surgery. It was all a bunch of bull. I even went out there face to face and they basically said I was wrong, and I needed to just leave. That was in front of all the people in the waiting area! Well, I knew that the orthopedic surgeon did have his own personal funds in the center. Several of our doctors got together and opened it, with another company's help. So. I went to the "big boys". I wrote a letter explaining ALL of it. I had names, dates, what they said, etc. and I told it all. I took it to my doctor's office. About 2 days later, not only did I get a call from my doctor, I got a call from the head gentleman over the entire center, with a HUGE apology!!!!! They were "grafling" at my feet, trying to make amends for the stupidity and ignorance of their "staff" the worked with filing insurance claims. Plus not only was Mom one of the patients that had the same insurance and they had tried to say they owed money that they didn't owe either. The point of me talking about this, IS because all of that took my time up, and lots of it. Even when I was home, ill and certainly not feeling like talking to those "morons", I did it, because it had to be done.
I realize that I certainly not the ONLY HUMAN on this Earth with some type of chronic illness/pain. I also have come to a real eye opener. That is we have a tremendous amount of our population all over the WORLD suffering from Autoimmune Arthritic Diseases!!! And in bringing those facts into the entire realm of this blog post, they also are subject to losing friends, relatives, not having a care taker, or they are a "care taker" for a family member or even possibly a close friend!
So, how do we "balance" the situations? We NEVER know when a flare or symptoms are going to pop up. We may feel great in the morning and have shingles, fatigue, pain, or any number of problems within hours. So, it is almost impossible to try and "estimate" how much or how little you will have the "physical" ability to do. The ONLY way I can do things, is try to make arrangements ahead of time. But, if somethings happens to me, or I am ill, I try to have an "alternative" plan ready. Fortunately, up until about 6 weeks ago, my husband can "step in" and take Mom to the doctor, or run an errand, or whatever she might need, he can handle it.
Of course as "Rhia's Law" might have it, my husband has been in terrible pain. Between going to a clinic and having a MRI, that shows the pain in his shoulder is coming from his neck. Well, I can certainly relate. Same Story with my last surgery. Almost my entire cervical spine was a mess. I had a 4 level discectomy, fusion and 2 replacement discs. So, I totally understand his situation. But, now my "caretaker" is out of pocket. I've had to basically "buck up" and pull not only My "Weight", but HIS and MOM'S also. Now he is in bed with some type of horrible flu, bronchitis or something. It happened suddenly night before last, and I pray I don't get it. I've disinfected everything in this house 10 times! And I am staying as far away as I can. I fear if I catch what he has, I'll be in the hospital with my immune system as it is. I've already been exposed to more than I care to think about having to be at clinics several times with my husband and Mom.
So, WE (WE - as in ALL of US with AUTOIMMUNE ARTHRITIC DISEASES) can and do have a great many "mountains" to climb. We also know about those deep valley's. They can take you in so quickly and put you right down at the foot of the mountain you just climbed up. Of course we also have "rewards" in the sense of the term when it comes to "us", "we" when the time comes for us to assist those like ourselves into a direction of wellness!!! When we use our voices, social media, writing, blogging, sharing, volunteering; ALL of those things are divine intervention that shall lead to better and quicker diagnosis, much more aggressive and earlier treatments, that then can HALT some or much of the damage these diseases do!!! It is "too late" for me. I have so much "damage" that even though we are trying to aggressively work on it, I already have most of my joints either replaced, and the others will probably have to be, hopefully not, but it is a good possibility I face that in my future.
BUT, until the moment I can no longer type (so I will find a program I can speak into and it will type for me), my heart, my soul, and my mind is set on the GOAL of HELPING others! Standing up with other like minded wonderful people that also share in my heart's goal!!! Through our struggle, and trepidations. we have found STRENGTH today and we stand United in our goals to change the face of Autoimmune Arthritis Diseases forever!
So, this is much of "my life"... day to day... and now the part here at the last is the very best. It is my new opportunity I've found with the IFAA, as an Active Volunteer. I've also been able to be able to give my own story to WEGO when I was invited to be on a panel. My blogging shall also continue to be not only here but on the IFAA's blog site. And with the upcoming WAAD14!!!! there shall be AMAZING THINGS FOR EVERYONE TO GET INTO THE Online CONVENTION in early 2014!!! There will be more upcoming information as we get closer to it! So, I'll post more when I know details... Take care of YOU!!!! Then you can help others....
