A little while back I posted an article called My Invisible Disease which I got a lot of feedback on. Because this seemed to be a subject that so many could relate to, I wanted to write a little more on the subject in hopes that someone will be encouraged or at least know that they are not alone.
I plan to write a few posts on this subject matter, so I thought that first of all I would give you an idea of my history so that hopefully you will see that I indeed have experience with the things that I will be writing about regarding living with chronic pain.
I suffered from severe migraines all through High School, College, and the early years of my adult life (they improved once I had my son, but I still have them on occasion). In my early 20's I suffered for over a year with ulcers (not knowing that is what it was) and later I found out, after finally going to the Dr., that I had over 40 ulcers! Of course that was able to be cured with medicine once diagnosed, but when I moved 2 years later and was still complaining of stomach pain and gastrointestinal problems, my new Dr. discovered I had gotten rid of the ulcers but now had gall stones. That was an intense pain, but was relieved by having my gall bladder removed.
When I was 25 I injured a disc in my spine one day while bending over to pick up a blanket, yes...I was simply bending over, nothing in my hands yet, and I felt a sharp pain shoot through my body. That was the beginning of a very difficult and trying time of my life...that has effects that are still with me 11 years later.
My back pain began to get better but I began having hip pain that soon stretched from my hip to my pinky toe. I eventually found out that I had permanent nerve damage in my right leg. I endured countless treatments, and many surgical procedures. In the end I now have what is called a spinal neurostimulator which is sewn into my spine and sends electrical impulses to my brain to help to distract it from the pain.
I could not stand up straight, or walk straight. I crawled on the floor many times because I could not stand. I was labeled by my Doctors and Surgeons to be permanently disabled and the likelihood of my working or walking normal again were slim.
To say this was discouraging would be a gross understatement. You see, I was a single Mom, trying to support myself and my son and I was also a woman who had found much of her identity (in error, but that's another blog) in her work. This left me with internal struggles as well as practical ones. I struggled with grief over the loss of the life I thought I would have and the activities that I loved so much that I would never be able to do again.
My prescribed medicines gave me terrible side effects, one of the worst was severe gastrointestinal problems (I had all the symptoms of Crohn's disease but was never diagnosed with anything other than IBS--which I've since learned just means that they don't know. Again, that's another blog in itself.) This left me at 108lbs, which for me is very skinny...my bones were sticking out and I had such severe stomach cramping, even after drinking water, that many times I passed out.
It was horrible beyond horrible...I could not imagine living the rest of my life this way. At this point of my life I was staying with family to help both physically and financially. I didn't want to live like this....and I definitely didn't think I could live like this forever. I struggled to find peace and joy in the midst of my circumstances.
I had never gotten mad at God, but had wondered WHY....WHY ME, WHAT WAS I SUPPOSED TO LEARN FROM THIS, WOULD IT EVER STOP?
One day, while my son was in school, I was curled up on my bed crying (which I always saved for times when my son was gone) because of what had now become years of severe mind blowing chronic pain. I was having a little talk with God in my prayers....
"God, I know that I keep asking you to heal me, I know I keep asking how long...when will it come, will I ever be 'normal' again, will I ever find a husband to love me (and my son) if I am like this for the rest of my life....BUT God, I get it now, you want me to just TRUST you...plain and simple...no matter how long, no matter 'if' my healing comes in this life, no matter what happens in my personal life, no matter how many more bills I seem to have than money to pay them....NO MATTER WHAT! So, I SURRENDER! I SURRENDER! I see that I keep wanting control of the answers and you want me to have FAITH, so from today forward I will try my best to worry less and TRUST MORE!"
I wish I could tell you that I was healed overnight, I wasn't...but over time I was getting more relief from my implanted neurostimulator and was able (about 2 years after my implant date) to drastically reduce (and eventually totally stop taking) the massive pain medicines that I had been using for years. And even though the Dr's were all insistent that these medicines were not the cause of my gastrointestinal problems, guess what....about 6 months after terminating their use....I was able to eat more regularly. I gained enough weight to be healthy again. And although I was still in pain, it was manageable.
I believe that the beginning of my return to independence started with the prayer I mentioned above. A year later (now several years since my injury) I had moved back to where I had previously lived, had my own place, had a job, and was once again independent. I was not pain free, but again...I had new expectations...I wanted only to have pain levels that would still allow me to function.
About 4 months after going back to work, feeling like I was regaining some sense of 'normal', I went to the Dr. because I had been waking up with pretty significant joint pain and having muscle weakness that had caused me twice to fall down the stairs in my home. I was diagnosed with Lupus...talk about a blow...had I not just gone through several years of terrible pain and agony? Wasn't I just FINALLY beginning to re-enter society?
As my Dr. told me the news I could not help but to just cry. I knew what Lupus was, I have several extended family members with it. I just stared at the floor as the tears came down and I finally looked at the Dr. and said, "I can't do this again. It's too much...it's just too much."
Because God is good, I believe that he had led me to this exact Dr. many years prior. This Dr. has been through all my surgeries and major health problems with me. This Dr. has a wife with Lupus....he gets it. I will never forget what he said to me that day, he said, "Jessica, you CAN do this! It will not be as hard as what you just went through but you will have difficult days, but when they're happening you will have to focus on the fact that they won't last forever. YOU CAN DO THIS!"
It has now been 7 years since my diagnosis of Lupus. I have also racked up a long list of other issues, which include but are not limited to heart problems and rheumatoid arthritis. There are a lot of secondary issues, which I like to call 'hitchhikers' that like to jump on the bandwagon when you have an autoimmune disease.
I was able to keep working for 6 years, and I no longer work, but I'm remarried and have the job as wife and homeschool teacher.
Because this is so long, I won't go into the 'how' I get through my daily life with nerve damage, Lupus, and all the problems I listed above, but I will tell you this....I'M STILL HERE! Although I seriously questioned it at times, it is true that God will not give us more than we can handle. I confess that I was really disappointed that I could 'handle' so much *smile*, but I did, I do, and I am....
I am not without pain, for sure, but I can walk...and they said I wouldn't be doing that. They said I wouldn't work again, but I did. My point is this, Doctors do their best to give you a diagnosis and a prognosis that is accurate, but none of them know for sure the plans that God has for you. Even if they say you will never get better, they may be wrong. Remember the old saying, "It's always darkest before the dawn."
Philippians 4:13
"I can do all things through Christ who strengthens me."
Just in case you don't read my later posts, I do need to tell you that without my Faith, and even more importantly, my Relationship with Christ, I could never make it through my days! I believe I would be dead. I had two times where I almost died in the past 11 years...and I believe that prayer is what kept me alive and sane.
If you can relate to my story...maybe not nerve damage, maybe not lupus, but perhaps you can relate to the pain, the struggle, the wondering how you will make it through...please be encouraged that it is possible. After almost 3 years of what felt to me like hell on earth, torture, and a breach of the Geneva Conventions by my internal body....I was getting discouraged that if things hadn't changed by then....they never would. But I was wrong! (I've never been so happy to be wrong in my life!)
Years ago I had the following quote taped to my computer monitor - "If it's possible, it's probable."
If it can happen for someone, then why not me? Why not you?
Psalm 31:24
"Be of good courage, And He shall strengthen your heart, All you who hope in the LORD."
What a touching life story, Jessica! I’m glad that what you went through made you a stronger person. Dealing with back pain and other serious illnesses is one problem that many suffer from. The cause can be a variety of reasons but they all inflict pain and discomfort. It’s also great that your doctor understands and can relate to what you’re going through.
ReplyDeleteYour post brought tears to my eyes. I also have Lupus... and Rheumatoid arthritis, and fibromyalgia, and endometriosis, and chronic fatigue syndrome, ibs, Sjogren's Syndromes. For the last 13 years I have been dealing with crippling pain that medicine has not yet relieved. Im no longer working I leave the house maybe once a week to see my family. My days are filled with tears, arguments with my husband that cause even more pain from stress, and constant hopelessness. He is irritated that I cannot do more and doesnt understand, and I want just so badly to be cared for and treated tenderly with compassion and understanding. We also just filed for bankruptcy because of my medical debt. I feel insane amounts of guilt and anger for what I cant do to help. I keep telling myself I cant imagine living another 20 years like this. I feel like I've been searching for so long for a doctor that will help me but it never comes. Sometimes I think that maybe this is just my life and I better learn to cope with it.
ReplyDeleteI am also a christian and like you feel that if I did not have him in my life I would not be here. It is so easy to feel alone but random internet searches that find something like this gives me the strength to keep going. I am not where your at and I dont know if I'll ever be but its nice to know im not alone. Not many understand the darkness of chronic pain and bad health. Not being able to control what you want to do for yourself. Having to rely on others for even minor tasks such as picking up a pitcher of water or carrying laundry. It builds and builds until you cant hold it in any longer.
But there is one things I have cemented in the very depths of my soul from of all this. You are more thankful for those good times, even if just for an hour out of an entire week or month. Those times are that much more sweeter when you have been starved of those sweet things in life. I think theres a greater understanding of life and struggle if you've dealt with any chronic illness. It only takes a moment to brighten someones day and after going through what I've gone through I find it much easier to smile at someone or make a kind gesture. I guess if thats one thing God has taught me through all of this... To have sympathy and kindness for others as they could also be facing the same struggles or worse, then I have to live with that and be grateful for that understanding. A person may go a lifetime not understanding the bigger picture but be happy and healthy not realizing... I have to see that I am lucky because God has shown me how to be patient, kind, and understanding of others. I hope others see this thread and realize they arent alone either. I have been through a lot... more than some people will ever experience in three lifetimes. But I hope that means I can make that much more of a difference to others feeling sadness and loneliness. Someone is always watching, always listening, no matter how bad it gets...One person you can count on no matter what.