Med Update

Thought I'd let you all know how I'm doing. I'm doing ok.  That's the best way I can describe it right now.  Right now, is a day to day battle still on how I'm going to feel. The pain is going away, slowly. It gets a little better each day and each week when I do the Humira shot (every other Friday).  I am optimistic that it will soon be gone, but for now, it's still something I'm dealing with.  I do still have to have another colonoscopy as they discovered a section of dysplasia (pre-cancerous cells) and want to determine how large the area is.  This can be done by injecting a dye at the time of the colonoscopy which to me, seems a lot safer than doing hundreds of biopsies and potentially increase the chance of bleeding.  At this time I'm waiting for my GI to call me but expect that I will be having it in the next few months. 

I'm still taking the narcotics, and my primary care would like me to continue until the end of February and then depending on the pain level start to ween me off. Since I've been on them since July, the weening process is going to be long, about a month long.  This will ensure the reduction or hopefully elimination of any side effects and make it a seamless process per se. I am ready for the narcotics to not be part of my every day life.  While a lot of people don't understand how I can function while I'm on them, they don't understand that for someone like me, who is truly and legimitately in pain, the 'high'  feeling that everyone wants from these drugs does not happen to me...because, horror of horrors!!! I am actually in pain :) 

I have my naturopathic doctor appointment the first week of Feb and I am really looking forward to this.  I am going to be heavy metal tested as well as tested for all subset viruses of lyme disease as well as other autoimmune disorders to see what naturally, I could be doing better. What I could be eating or taking (vitamins) that can make my body be more in balance. 

With all this in mind, I am going to sign up for a 5k in April with the hope that I will be able to participate. When I say participate, it doesn't necessarily mean run but walk.  I've got to get more active, get that adrenaline punch that makes me happy and keeps me going.....

Mushies...

For those of you that know me, I mean really know me, you know that sometimes I can be mushy but most of the time I am not.  However, I feel like being mushy right now. One of the things that I've recently had to accept was that I can not go through this illness process alone.  Years ago I had accepted the opposite fact, the fact that I may be alone in this process, and that I needed to be a strong independent woman to do this. I can't be upset, or cry, or whine about the days when it hurts.  But, as time has passed, I've realized this is more and more NOT TRUE and to be honest, is really not good for your emotional well-being and your interactions with your friends and family !
I'm lucky to say that I've found someone who is there to pick me up when I fall, to console me when I whine and don't feel good, and to be honest, just rub my back when I need it.  He has disrupted my world for the better, made me throw away the thoughts of full independence, and accepts that I am sick, will be sick for a long time, and may get really sick down the line. He has accepted this, and says he'll be there for me when I need him whatever it may be.  When we first started hanging out, I told him about my illness. I told him that it's not glamorous, it's not pretty, it's not something we talk about in great detail but that it's something I will have for the rest of my life, and for now, it's under control. That was a couple years ago.
Enter, the journey into the medical mystery and this past year.  And while all the medical mystery is going on, our relationship was getting more intense.  I sat down one day and realized that, and it made a tear come to my eye. He was there for me when it was bad. He helped me up off the couch, he asked me if I needed anything, he cleaned up my puke from the bathroom...all of it. With no grumbles, or strange comments, or an irritated air. He did it with love in his eyes and in his heart. And my walls, my walls of fear and loneliness and the wish for something better, and someone better to be there for me, crashed down.  They crashed down hard ! I cried for a while in realizing this, and when I came out of the piles of snotty tissues, I was a better person.  I'm a better person because of him and his acceptance of me, all of me, and all that doesn't work with me.
I love you baby. XOXOXO

The Holidays

So, these holidays come with some bittersweetness attached to them. I am surrounded by people I love, both family and friends, but at the same time I just want to crawl into bed with a box of tissues and cry.  Cry because I am in pain, cry because I don't know when it's going to stop and cry for my life I used to have that included running and being more active.  Every morning I wake up wondering what that day will feel like, not what the day will bring activity or actions wise, but what my joints and lungs will be feeling.  It's a very disconcerting shift in your emotional well being to change how you wake up and what your first thoughts are.  Usually the thoughts flood me right around the time my cat, Chippett, starts pawing my face asking where his breakfast is.  So, then the smiles come ;)

But, I am wishing for a new year of new beginnings, of starting a life again that I enjoyed or at least, deciding that the way my life is now (if it's not a short term pain problem, but a longer term pain problem) is the way it is and figure out ways to be more active without worrying about what I can and can't do.  I've got a lot of New Year's resoluting to do :)

My New Year's Resolution

So, as you've read, it isn't going to be too much of a shock on what I want my New Year's Resolution to be...to wake up one morning with no pain and feeling like myself.  But, of course, I don't have much control over that....but I do have some control over my reaction to most likely not having my new year's resolution come true. So, that means, I'm going to tweek it a little bit to say, wake up feeling like myself and being ok with it.  Now, that's something I can actually have some control over.

So as time passes until the end of December, and the New Year is upon us, I'm going to work on it.  That's all I can promise, is work on it.

But you don't look sick

That saying is one of the most annoying, frustrating, and emotional statements that can ever be made to someone like me, or as I've learned, from almost anyone who is dealing with a chronic illness. What needs to be understood is that my health can change on a dime.  I can feel fine at 3pm on Friday but by 8pm on Friday, I can be nauseous, sick to my stomach with significant abdominal pain, or in the case of what I'm dealing with now, hands that won't close, and knees that won't stop buckling when I try to walk.
This causes emotional strife for me.  What I mean is, when I'm not feeling well, but two hours previously felt great and committed to something, it is very guilty feeling for me to call that person and let them know that I can no longer attend. While my friends are understanding, and always have been which is why you are my friends, I will always have the guilty feeling which probably doesn't help not feeling well :) It's all a catch 22.
But there are so many people out there who don't have the friends I have who have to deal with responses like, are you sure you don't feel good? Are you sure it isn't all in your head? You don't look sick? How can you have a digestive disorder and be the weight you are ? YADA YADA YADA, and for that, I am grateful for every single one of you.  I can deal with feeling guilty when I don't need to, but I would have a harder time dealing with finding more spectacular friends than the ones I have now !!!!

Things we don't talk about...out loud...

So how many of you have tried Reiki? I tried it for the first time this weekend and while it’s concept is strange and you can’t imagine that you get anything out of it, it was fantastic. The concept surrounds taking your bad energy out and replacing it with good energy and this is done by someone who places their hands on you in certain places such as your elbows and knees for a long period of time. The official definition: a healing technique based on the principle that the therapist can channel energy into the patient by means of touch, to activate the natural healing processes of the patient's body and restore physical and emotional well-being.

It was great ! I felt totally relaxed but I also had experiences of waves of energy throughout my body.  I don’t know if it necessary meant that she was transferring positive energy to me, but it felt that way and I felt great afterwards.  So, this further reinforces my needs to try to find alternative ways of dealing with the pain and the emotional anguish that I’m going through. But, then days like last night happened.

As most of you know who take any sort of narcotic, they can ‘bind’ you up.  Big time! And last night for me was that time. Everything I tried didn’t work. I’d feel like oh yes, this is the time, but nope, it was all just a false alarm.  Eventually things worked out for the best, and forgive me for the humor but I know feel light as a feather. It’s one of those things that you have to weigh the pros vs. the cons. The pros being obviously a more pain free way of life, but then this big con rears its’ ugly head. Luckily, as I’ve said before, I have great friends, boyfriend, and family who made it all a big joke, and helped me get to the end goal ! J

Also --- after guidance from a friend, which helped reinforce some more thoughts in my head about what is going on and other means of healing, I’ve made an appointment with a naturopathic dr in the NH area on her recommendation.  While it’s two months away, I know that no matter whether I am suffering from anything physical that is manifesting itself, that I know that this type of medicine, natural, will help me better in the long run. Looking forward to it….

Emotions...

Now, I consider myself a strong independent person.  But one of the things, in addition to dealing with all this medical stuff, is being able to let go of the independence, at least a little bit.  When I call my mom and dad crying at 2am in the morning wanting my mom to come and help me, obviously that is letting go of some independence at a time of great need or emotional strife. But, I need to work on doing this more often. Accepting help when it's offered and realizing that the people who are offering help (hopefully) aren't offering it out of pity but out of love and concern for me and to make sure that I can do what I am looking to do.

So bear with me everyone. I'm getting there :)