Tuesday, July 23, 2013

Let's Talk- In Sickness and In Health

We meet again...

I always love blogging days.  I am always thinking throughout the week about things I want to talk about, and pondering questions that I get asked.  In a time where there is not much I ma able to do physically, you give me something to do with my mind and I just love it!

While my illness is certainly not a new topic for you, it is something I get asked about quite frequently, so I will be talking about it today.  I do not mind at all- I realize that my condition is not well understood, and I also realize that there is an element of sheer curiosity that goes with it, which I am more than willing to oblige seeing as I myself would be curious as well!

So let's have at it, shall we?

1) What exactly is wrong with you?
I am going to be as to-the-point as possible.  4 years ago I had a reaction to medication and got something called Stevens-Johnson Syndrome.  My body began literally burning itself- my eyes, my skin, my internal organs, my nervous system- all sustained some level of damage.  After 6 months I "recovered" and was left with the "new" me.  I learned to live with permanent eye damage, a weak immune system, chronic fatigue, and a very wrecked nervous system.  For the first 3 years we were able to manage it- I watched my level of physical activity and every few months I knew my body would "shut down" and I would have to rest for a week or so.  It fell into a pattern and we adjusted accordingly.  However, last year something changed and we are still not sure what or why.  My nervous system is firing off and I am in pain from my head to my toes every single day.  There are times when I am too weak to move without assistance.  I do not sleep well nor am I able to eat very well.  I am severely limited as to what I can do physically and I am just basically shutting down.  All tests are coming back normal and my doctor is working tirelessly to find out what is going on.  I am scheduled to see a neurologist in a couple of months as my doctor wants to get other specialists involved.   I realize this does not make much sense, trust me I know it's frustrating!  Above all else I really just want answers!  The main thing Jeff and I have to focus on now is pain management and working on restructuring our lives to accommodate my physical limitations.

2) Are you angry?
Umm...no, not really.  There are times where I get sad that I am inconveniencing so many people...my husband did not sign up for this, although he reminded me that our vows did include sickness.  But still, there are times where I feel like I am more trouble than I am worth- I don't meant for that to sound so depressing, but the honest fact is that I am not pulling my weight in this world and that bothers me.  But I am not angry.  I don't question why this happened to me- I could have died from the SJS but I didn't.  I am still here, and as long as I am still alive then there is something I can be doing for God.

3) What kinds of changes have you had to make on your life because of your illness?
A lot of things have changed these past few months.  I have had to pull out of a lot of the things I was involved in at church, simply because I do not have the physical stamina to always be there.  I rarely cook anymore, which is very hard because I absolutely love to cook and I hate serving my family basic, easy things just because I am unable to do better.  We use paper plates a lot to cut back on the dishes I have to do and Jeff is home a lot more.  Sometimes he has to take off of work if I am too weak, and other times he comes home from work only to basically take over while I rest.  It seems that life revolves around me physically.  It's tough for him but he does it all with so much love...I am so grateful for him!

4) Do you remember what it was like before you were sick?
Not really, lol.  I have a horrible memory which has only been exasperated by my illness so I really do not remember what it was like when I was "normal".  There are things I miss, not so much because I remember what it was like but just because I know I want to do them.  It would be nice to not be in pain all the time, but I don't really remember what that feels like.  I would like to be able to be more active and be able to do things without always having to consider if I am physically able to.  But I don't really compare much because I don't remember.

5) What can a person do to help someone who is ill?
Not that I am the spokesperson for all sick people, but I do know that certain things help more than others.  I am sure you have heard this before, but nevertheless it's true- don't tell someone to call you if they ever need anything.  They won't call you.  Trust me.  I hate asking for help and I hate inconveniencing people.  The best things people have done for me was when they simply told me what they would be doing.  My friend Erica came up to me one day and told me that she would be cooking dinner for my family once a week.  She did not ask me if I wanted her to (which I would have said no, because while it is such a blessing I would never want to be a burden), she simply told me she was doing it and made it very easy for me to accept without feeling guilty.  My other friend Jenn will call me randomly and ask if she can come over and help with the kids or take them out for a little while.  She almost makes me feel like I am doing her a favor by saying yes.  These are the things that truly help a person who is sick because it takes away that horrible feeling of being a burden or feeling guilty for having others help you.  The other thing is asking the person how they are feeling- I am still torn on this one.  On one hand, I think it is so sweet that people ask me that all the time- it really does make me feel loved.  On the other hand, it is very, very hard to answer that question.  Nobody wants to constantly tell people just how bad they are always doing, yet people know when you are giving them a fake "Im fine" answer.  So I don't really know how to advise you on this one!   I guess I would say this- don't ask every single time you see them.  A person's illness is just one part of who they are, and it doesn't always have to come up- we can talk about other things!  But if you are good friends, then maybe every once and a while pull them aside and ask them to sincerely tell you how they are doing and give them the opening to be honest.  One last thing- please resist the urge to bring up the article you read about the magic product that says it cures that illness.  I have heard countless things that are said to "heal" my pain and while I know people truly mean well, the fact is that these things take time and cost money- and I can tell you that I just do not have the time and energy for it all.  Surviving my day takes everything I have.  So unless you have first hand knowledge about it and KNOW it works and unless you are willing to buy it for them, please refrain from bringing it up.  It puts the person in the awkward position to have to smile and nod and then avoid it the next time they see you because they know they are not going to try it.  I hope that doesn't sound harsh- but there are a lot of things out there that claim to fix stuff, and they cost money and all claim to work.  It gets expensive and tiring and discouraging.

6) How do you manage the pain?
I decided to answer this question because I know it is very controversial in the Christian world.  I do not want to start any type of controversy, but I do feel that things should be talked about.  The more we talk about things the more understanding we get, and then hopefully the more we are able to help one another make the best possible choices.  I have taken everything from seizure medication, to antidepressants, to narcotics so I am speaking with some knowledge.  While I am not necessarily giving my opinion on it, I can say that I personally did not like any of the medication they gave me that had any relation to antidepressants.  I tried several kinds because pain is one of the things they are used for, but I did not like the way they altered my mind.  I felt like my personhood was being messed with in a way that I found unacceptable.  The anticonvulsants were a little different but they did not help anyway, so that was an easy no.  I have tried many many many natural things from diet, to epson salt baths, to herbs and vitamins.  I tried for a while to use worship music and prayer.  I am doing the very best that I can but I still use narcotics daily.  I have several different kinds that I switch around because my goal is to use the absolute lowest dose possible so that I can maintain mobility and have some level of relief.  When I do not use anything it only takes an hour or two for the pain to bring me to my knees- I try and go as long as possible but eventually I am rendered immobile from the pain.

No good answer here.  I hate narcotics.  There is a spiritual element attached to them and I feel my mind is opened and loosened more than I would like it to be.  I have done my best to find the right fit for me, and the medication I use now I am getting comfortable with.  I am being as prayerful as I can be while trying to navigate this, but like I said, there are no good answers right now.

I realize that you may be tempted to feel sorry for me, but please resist the urge.  I do not feel sorry for me.  Bad things happen- they have been happening to people long before it happened to me, and they will continue to happen because it's the world we live in.  But my spirit is whole.  I cannot stress this enough- my spirit lacks nothing and in the end, that is all that matters.  So I welcome your prayers but not your pity.  We all have our crosses to carry, lets join hands in prayer and walk the best we can together.

I look forward to seeing you Friday and I hope you have a wonderful week!

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