Friday, July 19, 2013

My Poor Me PItY pArtY...That You May Or May Not Care To Read

How's that for a title? At least if you are still reading you know what you are about to get yourself into. If you have been following along on this blog at all you know there have been some medical issues that I have talked about, at times, ad nauseam. But, as I have mentioned before, it's my blog and this has been my life for over a year, so I get to. ;) After a year of obnoxious symptoms, tests, tests, and more tests and nearly as many doctors I have a diagnosis.... 

Drum Role Please

I have something called CREST also known as Systemic Scleroderma. It is an autoimmune, rheumatic and connective tissue disease with too many symptoms to list here. But you can read more about it here if you want. 

About a week ago I got a book called Sick and Tired written by a lady with a number of chronic illnesses. I have really been able to relate to the author. In the book she talks about going through stages of grief when finding out your have a chronic condition. You are experiencing the loss of your life as you knew it. The day of our doctor's appointment, the one where we finally got the official diagnosis, I felt like I was going to go through all the stages of grief in one day. 

Our new doctor, right off the bat, really frustrated me so by the time I left her office I was annoyed and actually kind of angry. Jarrod spent the entire trip home trying to encourage me with the fact that we did not expect to leave the office with a diagnosis and the beginnings of a plan in place. And yet we had both. I chose to focus on my anger and couldn't see the bigger picture for awhile. (Clearly my maturity level has not been affected by all of this in the least.) 

After we had been home for a few hours I decided to update the facebook world. I tried to come up with something concise and upbeat to say and as I was typing out my status update I finally got it. This was something I had all but given up on, we finally had some answers and we were finally going to start treating one of my two most bothersome symptoms, joint pain. When the rheumatologist was doing a joint analysis, she checked the joints in all ten fingers, both wrists, and elbows. She said every one of the joints was swollen and inflamed and finally stopped checking the rest. My first thought was a very mature, "thank you!". Because when you spend a year trying to get answers, to no avail, you sometimes begin go wonder, "is this all in my head?" So as I spread the news of what we had found out at the appointment to family and friends I began to get excited about where things were headed. 

Fear and General Feelings of GRRRR
And then a little while later there was the thought, "oh crap, this is for real." Scleroderma is something that was mentioned about a year ago when I had a positive blood test for it. The rheumatologist we had at that time very quickly blew off the results so there was always the hope in my mind that I did not have it. Nonetheless, we read up on it and it was enough to frighten me at that time. I have since developed more symptoms of the disease, between that and the blood test this rheumatologist is convinced that this IS what we are dealing with. This thing could never get worse than it is right now or it could get really bad. I'd be lying if I said I have been able to remain completely optimistic about it. Either way, in the back of my mind, there was always the hope that we would find out I had something treatable and I could get back to feeling fabulous. Now I know this is forever and, well... GRRRRR! 

Unfortunately this "stage of grief" does not seem to be passing as quickly as the first two. I am bummed, and scared, and frustrated. I feel sorry for my kids, that their mommy is broken and boring and has the energy and pep of an eighty year old woman. I feel sorry for my husband that his wife is broken and tired and not keeping up with the house or anything else like she should be. And that he is having to work a billion hours to pay for never ending medical bills. (although I NEVER hear any complaints from him) I feel sorry for me, I hurt, my fingers keep swelling up and turning colors, I am tired and there is no end in sight.

But I refuse to end this post on such a negative note. A few months ago I jotted down some of the "good" that has come of the last year. To highlight a few: 

  • God has sustained us when it should have all fallen apart.
  • My kids have been absolute troopers - compassionate, helpful, and willing to lay low when I need them to. 
  • With a few exceptions God has put the right doctors in our path - allowing us to find the herniated disc. A fabulous surgeon who fixed the disc, which eliminated several symptoms and helped us narrow our search.
  • As if I needed any more proof - I am so very convinced of and blessed by Jarrod's unconditional love for me. His goodness, kindness, compassion and love shines through every day in nearly every one of his actions. He is so selfless and deserves so much more than life seems to be handing him lately.
  • God protected my neck when it was in dangerous shape - keeping me away from Chiropractors, Physical Therapists, etc. All WONDERFUL at what they do. All recommend by friends trying to help me find relief.  But, as we later found out, due to the position of the disc, these forms of therapy could have had disastrous results. 
In all these ways God has shown himself faithful. I can only assume he will continue to do so. I am struggling quite a bit spiritually but as I keep telling the kids, He MUST have a plan! And I am clinging to that. 

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