Small Steps

Feeling a bit better today. Not much energy but with cane in hand went for a very short walk. Just half a block total, small steps but they were steps moving forward. The weather here today is beautiful and the temperature was perfect for a morning walk. It was nice to get out and do something that felt normal for a change instead of being cooped up in the house. I came back wiped out, but it felt good. The hand is better. Sore as the dickens and ugly to look at, but the swelling is much better. If it wasn't for the fatigue I'd feel like my "normal" self. Although, I'm not sure what my "normal" self really is anymore. We leave for Texas a week from today. I'm counting the days.

It's OK

What a day this turned out to be. Woke this morning with a right hand that had a red hard lump at the IV site that had infiltrated during IV steroid treatment a few days ago. Just over the time it took to make breakfast my hand swelled significantly and I knew I had an big infection going on. Fortunately, my MD has Urgent office hours on Saturday's. So, at 9 hubby and I were in the office. By 9:30 they were freaking lancing my hand open in two places and taking cultures. Needless to say OWWWWWW?!?!?! Pain, along with major frustration, and I had a good cry when I got home with a bit of "I GIVE UP" thrown in for good measure. Now, 8 hours later two doses of Vicodin, antibiotics and some rest I have a better mindset. :) (I had no more emotional stability or control over my frustration level at 10 this morning than a 2 year old an hour past nap time. I know it, I own it and after all I've been through the last two months I EMBRACE IT!). Now, all that being said, geesh I HAVE HAD ENOUGH! Just when I was starting to feel better and come out of the steroid UGH, this happens. Now I'm on two different antibiotics and Vicodin for the pain. (I can not believe how fast my hand swelled up and how painful it got. Well, yes I can. After three rounds of steroids in 2 months I have no immune system to fight. So the bug took hold and ran with the opportunity. QUICKLY). A third antibiotic is on standby. Fortunately, with the exception of the pain in the hand I actually feel pretty good. (Although that could be the Vicodin typing). My mind is the clearest it's been in awhile. My legs are still pretty unpredictable and doing some spasming, and I have TWF (Train Wreck Fatigue) with the most minimal activity, but I FEEL good. Which is a HUGE thing. My biggest has been keeping my frustration level under control. It seems I've been whacked every time I turn around lately. I'm a big believer that it's the positive mindset that will get you through the challenges we face and I've really had to struggle to hold on to that. Not the belief, but the mindset. It's hard to be positive when it seems that at every turn there is yet another challenge waiting to be faced. It's hard to keep the "well" filled so you can keep going to meet the next challenge. I've really had to struggle with that this past week. I've managed, since May when my journey turned rough, to be positive. No matter what happened. However, this past week that all changed. Everything just became too much. Too hard. I had a really bad couple of days and then, today happened. However, it was GOOD that today happened. This evening I had an epiphany. I NEEDED the emotional release I got when my emotional stability was reduced to that of a two year old. I NEEDED to cry, to vent, to be angry at God for a bit. I needed to verbalize out loud that this ISN'T FAIR! That I hate MS, I hate what it's doing to me and I hate that it's changing my life. I needed to acknowledge that I'm ANGRY. I needed to get everything I was holding in being "strong" and let it spew out all across the floor. Then, I needed to look at everything that was lying there. The anger that was no longer pent up, the frustration that was no longer gnawing me from the inside, the pain that was beginning to paralyze me and the fear. When I looked at it I realized something. I realized that it was O.K. It was OK to be angry, OK to be frustrated and definitely OK to be afraid. I realized my REAL problem was that somehow I had convinced myself that I am only strong if I keep all those emotions at bay. Under strict control. As if they don't exist. So, I did. Until the energy of doing so drained ME of every ounce of reserve I had to fight and keep being positive in my journey. I was defeating myself. Phew. Boy am I glad my hand got infected! The bottom line. It's OK to be angry, it's OK to be frustrated and it's OK to be scared. What's NOT OK is to keep it all bottled up inside. I learned when I keep it bottled up I'm actually smothering my own ability to be positive. There's not enough room inside to hold anger, frustration, fear AND positivity. I choose positivity...everything else can just lay there on the floor.

What a difference.

What a difference two days make. It's been 48 hours since the last steroid infusion. I feel like I'm coming out from the fog. Spent most of today sleeping recovering from 5 days of steroid induced insomnia. The metallic taste is finally gone from my mouth (YEAH) so I can sip lemonade again without tasting dirty pennies! While I'm really weak (I'm using the walker) I physically FEEL better. Those steroid side effects are brutal. I just hope this time it did it's job. Of course, time will tell. I see no improvement with my eye, but I'm fully aware it will take time to see if it worked and time for things to heal. I'm now starting to focus on Texas. I'm nervous about it, but very excited too. I've seen how Dr. Rhodes' treatment program works and I see no reason it won't work for me too. I'm literally counting the days until I go. Of course, I'm well aware that when I return I'm off of UCLA and discussions of Novantrone therapy (which I'm NOT looking forward to), but I'm going to do whatever it takes to get back on my feet again.

Another step forward

As I didn't receive a steroid infusion yesterday, I was actually able to sleep a bit last night. Fitfully with weird dreams, but at least it was sleep! I'm very jittery today which is to be expected coming off the steroids. My plan for the day is to do NOTHING. Rest, watch TV and recover. In both mind and spirit. Mark is home which also makes things easier. Just knowing he's in the house I rest better. I received my MS lifelines Magazine and The local MS Activities calendar in the mail yesterday so I'll read through them and see what I can learn :) So, today is a better day as tomorrow will be. Another step forward and the journey continues. Eight days until we leave for Texas and hopefully, a new successful treatment!

FEAR

I wish I could say my frustration level is lower than it was this morning. Unfortunately, it's not. Of course feeling like cr*p doesn't help. I know that by Sunday, other than the weight, most of the worst of the steroid side effects will be gone. So, on a physical level I'll be better. I'm not so sure the frustration over my limitations and how bad this exacerbation has been will be. I think the bottom line is I'm scared. REALLY scared. I'm scared that this summer is the beginning of a downwards spiral in my Journey with MS. Previously, I've always been fairly lucky. Until last year, I'm managed with just a few small "flare-ups" that resolved and never left me with any residual symptoms. Last year I started to have exacerbation's that left me with "symptoms". (Isn't ironic we don't refer to the problems as "damage" but "symptoms"). I now have a left leg that works when it wants to...or not. My balance is so unreliable that I have to consciously think about taking that first step when I get up, heck even getting up requires concentration more often than not. These are all things I can and will deal with. The real issue for me right now is fear. I have to somehow find some perspective, some strength so the fear doesn't paralyze me. Letting the fear take over when dealing with any issue is what will do you in. I know that. Once you allow fear to take control, you've lost and you have allowed yourself to be defeated. WHICH I REFUSE TO DO. However, I'm also tired. Very tired. Of course, I have my faith and I turn to God knowing that He will take care of me. But right now, at his moment, I feel as though I'm alone in a deep forest and those trying to reach out and help are simply to far away. I can hear their calls of support and encouragement but ultimately I am alone. I alone am experiencing my Journey of MS. Everyone else is a supporter and spectator, although I can't imagine how painful it is for them to be unable to do more. I know my husband would take this on himself if he could. I am so glad he CAN'T. I have to fight this fear and find my strength alone. No one can do that for me and I will do it. I won't just do it for me though. I'll fight the fear that wants to take over for my husband, my family and my friends. I'll do it because it's through their love and support that God gives me the stregnth to keep walking this journey without giving up.

Angry

Just returned from my morning MD appointment. I gained TWENTY FIVE pounds during this round of steroids. TWENTY FIVE FREAKING POUNDS. No wonder I can't breathe and feel like poop...heck I'll say it CRAP. I HATE MS!!!! I really try to keep my spirits up and keep a positive outlook, but right now it's very much a challenge to do so. Of course, I realize part of this is also the steroid personality "meanness" that comes with steroids so it will pass in a few days. Part of it is that I've just had a terrible summer with an exacerbation that own't quit. I miss my mobility, I miss my ability to come and go as I want, I miss my energy level and my activities. I miss my job and I most of all miss being the wife that I am to my husband when I'm NOT having an exacerbation. I miss being ME BEFORE MS. Before this stinking journey began. O.K. having had my rant now what? Now by goodness I AM going to allow myself to wallow in self pity for about an hour or so. Then, I'll regroup and carry on. Putting one foot in front of the other with determinination to do everything I can do to move forward head high. I have to admit though, sometimes I get tired of the fighing, the struggles. Sometimes I just don't have the energy to take that step. Are you listening God?