THE PAST
It has taken SO long to finally figure out what I have wanted to do with my life...well...for today that is...tomorrow may be completely different. In fact, I can almost guarantee that the list I make of things to do may possibly go awry. Once upon a time in a long ago time, I prided myself on making my lists for the day, and usually making it through AT LEAST three-fourths of that list and then still wanting to be around people, be social, play outside with the kids because I had energy and strength... I was able to work out 4 to 5 days a week. But you know, I never realized JUST how good I had it...because it is absolutely true that you never know what you have until it is gone. What did I have? I had what many people take for granted every day, energy, health, the ability to focus and overall, if I started a task, I had the strength to finish it. If any one out there is relating even a little bit, I am here to say that this journey we are on...there is hope...for many years I have been frustrated, withdrawn, with many bouts of depression because I was daily trying to survive first of all and then it became focusing on what I had lost. I have a new normal now, as I tend to call it, and I still am in the process of defining it and taking Proverbs 31 and Titus 2 and then doing my absolute best, given my limitations, to let God show me how to live that life that came so much easier in those yesterdays and make them work in my todays.
THE ROAD TO DIAGNOSIS WAS LONG
I was preliminarily diagnosed 5 years ago this coming October but symptoms showed up almost a decade ago now. It started with horrible migraines, daily migraines. I had always had a few migraines here or there, but not like this. Very few people know the whole story....the trips to the ER because I could not stop throwing up, the incredible guilt I carried because my youngest was just 3 at the time and my dear husband was having to carry so much of the load. My children still talk about the fear they experienced because of those ER trips. Two years of this alone, and then Thanksgiving, 2003. Tuesday of that week I started feeling horrible and went downhill fast. I went to the doctor and he diagnosed me with three illnesses at one time. He told me I would be acutely sick for 3 weeks and it would take me another 6 weeks to feel like myself again. Well...that bout of illness was the line of demarcation for me. My life has never been the same. I was constantly sick that Winter/Spring, enough that we thought maybe it was my tonsils? So, out go the tonsils... No change... I was so tired all the time and panic attacks along with depression started. During this time, I got repeated pneumonia, strep throat (before the tonsils came out), bronchitis, sinus infections, pleurisy, neck pain, and I caught everything that came down the pipe. I had no energy. I went from a outgoing, social person to someone who did not want to be around people or my family (outside my husband and kids). Can I get a witness???
THERE REALLY IS SOMETHING WRONG???
I had a wonderful Christian doctors who are good doctors, but it takes an average of 8 to 10 years to get diagnosed with lupus. I do not blame them at all. Had my dentist not caught it and told me to have the ANA test done, I think a regular doctor would have eventually gone there, but I do not know how much longer it would have taken. Yep, it was my dentist. My gums were so inflamed and bled every time I brushed, which was not normal at my age. She asked me if I had an autoimmune disease or got sick a lot, I said I had but she said we would treat them for six months and she if we could get them to settle down. In six months, she asked me if I had ever heard of lupus because by that time I had benign lesions on my gums. I said "lupe what?" At that point she told me to get to my doctor and get tested. Of course, you know the answer.... the day I got tested, it was positive... I say that with my tongue in my cheek because that silly ANA can be positive one time and negative the next.
As with most of you, diagnosis day is full of emotions. Relief that you are NOT a hypochondriat on the one hand and second, there, of course, is the fear of what the diagnosis brings with it depending upon which one it is. By the time I was diagnosed, pain was also a constant companion, so you also feel relieved that you are not "making it up". Then with your family you almost feel like saying "told ya so" or something similar.
My husband is a jewel. He has been carrying our family in so many ways since the migraines started. Remember, by that time it had been 5 years of migraines,pain, illness, depression, anxiety and him having to take over so many jobs that were "mine" to help keep our household running. He felt as if I had abandoned him to some extent. We still working through those years in one way or another. These diseases have had an effect on all my relationships.
BUT YOU DON'T LOOK SICK
How many of you have heard this? Once people hear that you have one of these diseases, this is the first thing most of us hear. Today because of more medications commercials for fibro and RA, most people have heard of the diseases, and yes they have heard OF lupus, but how do you say (or explain) it is a hormonally based inflammatory connective-tissue autoimmune disease. Most common response is: Blink, blink....oh and "how are the kids?" is the next question. Honestly, I am not sure I understand my own diseases sometimes! In fact, I am sure I only understand a small portion of how they truly effect my body. So, it is hard to expect other people to understand them. It is a very isolating thing. In a world where people are running 90 to nothing, who truly has time to sit and listen to what we are going through? Who honestly wants to hear that "oh, did you know that some weeks 5 out of 7 days I wake up feeling like I have the flu?" Then there is your own family...the guilt that goes WITH these diseases is just so difficult. Our memory, of what we were like "before" when we could run 5 miles or whatever it is that you could do that you can't, is not taken away. Not only that, there are my lupus-brain days where I swear my IQ quotient must drop 50 points at least. The easiest thing to do is withdraw, and withdraw I did... for two straight years after diagnosis. I did start seeing a rheumatologist and get on the only types of drugs they used for lupus back then. But I was still quite sick. These diseases effect every system in our body, as you all well know. I am not the same person I was then. But I don't look sick....well, if they could see the 1/2 dollar-size spot on my head that has no hair that I cover up.. BUT WHAT is next!!!.
WHERE DO I GO FROM THERE?
Never before did I desire to be a social isolate. But isolation calls my name these days, but it is not what I am CALLED to do...I have a purpose. But so many days, it was/is so much easier to be an isolate. However, it is unhealthy not to fellowship with other people and fellow believers. We learn through others and draw strength through friendships and fellowship. Recently I joined a bible study that has other people who are facing illnesses or health issues similar to mine. I cannot tell you how exciting it is to be around others who really, really get it! I also pulled away from my first love, Jesus, a few years back. I don't think I was angry... I think it was all I could do (or so I thought) just to make it through each day. The truth is, He IS the way I make it through each day. My new friends, try not to isolate. We need each other in this world, whether it is at a local support group or your church or a very trusted friend. Most of all, remember we need Him as surely as we need the air we breathe, for His grace is sufficient and His power is perfected in our weakness! (paraphrase of NSV) 2 Corth 12:9-10
There is so much more to say, so much more to write, so much more that He is teaching me that I want to share. I will never know who reads, and it is up to Him if this blog reaches anyone. I can only pray that what comes out of my mouth blesses Him, points to Him, and glorifies Him. I want to leave you today with a verse from Proverbs that no matter how awful I am feeling that day, or how tired... this I can always strive to do. I can pray that God gives me ears to hear my children and my husband that he gives me words of wisdom for whatever they need, and most of all that I teaching them to be kind and I am kind.
"She opens her mouth in wisdom, and the teaching (law) of kindness is on her tongue" Prov. 31:26
Only by His Grace,
Diane
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