With my appointment at the Mayo Clinic just days away, I find myself just waiting in sort of a slump. The past few weeks have been hard.
I’ve been sitting on this entry for a week wondering if I was brave enough to post it. Sometimes I wonder why I even write on such a personal level; it makes me vulnerable. Maybe my hope is that I might gain some support, or help someone in my shoes. Maybe I might assist someone in understanding this rare and shitty disease.
I need help focusing my energy on healing; keeping positive and healing thoughts in my mind. My counselor has been helping me with this. I’m constantly distracted.
Sometimes I’m afraid that people will forget about me. Sometimes I feel forgotten. I might not be able to go for a walk or out to a bar, but I can still laugh and have fun. I’m still in here.
I don’t get many visitors. I don’t always get out of the house to meet friends on Saturday morning. I've been working from home since January. I get lonely. I stress out trying to keep up with my friends lives. I sit and worry that I’m the one who’s forgetting people. I wonder who this blogs 1,300 page views are from, since only a handful of people tell me that they ever even read it.
There are however, those people that just pop up to send me a quick note to say “Hi” and that they’re thinking about me; leave a comment to check in, or just let me know that they’re there. Just knowing that there is one more person on my cheering squad, it means everything to me. It’s what helps me get through these tough times. I am so grateful for those special people. I hope that I can always be as good a friend as they are to me.
I know that in the past people have gotten upset by entries of mine that have been depressing. I don't even think that I have even been totally honest about how I’ve been doing. I AM depressing.
I'm in pain almost all of the time, even though I take painkillers three times a day. Today I had a hard time lifting up my fork, my legs shake when I walk down the stairs. This is terrifying and humiliating for me; something that I don't usually share with anyone except for my husband. It's hard for people to hear that stuff; and it's hard for me to admit, too. So I understand how not knowing the full story could effect ones reading of this blog. Maybe no one knew that I was that depressing.
99% of the time I really am optimistic and cheerful. I am realizing though, that you don't get the support that you need when no one knows that you're hurting, or when.
I don't mean to be rude or complain. I'm not mad at anyone; I just wish this would all go away. "Normal Maren" isn't such a downer. She is not a complainer or a crab. She's almost always happy and she's fun. I miss her a lot.
I did chop my hair off last week; that feels better. I also got a new fancy toothbrush that has me obsessively feeling how clean my teeth are. Yes, these are exciting things for me these days. I can laugh at that.
My most exciting news though, is that some of our dearest friends had their first baby this week. I couldn’t be happier!
No matter how depressing I think that I am, it never changes how I feel about others. I may be a little more emotional or sensitive, but it never takes away from my excitement and joy for other people. Sometimes it is hard to watch everyone’s life move by while sitting at home sick. I’m never jealous or resentful though, I promise.
So now I just wait, just a few more days. All the paperwork is done, records submitted. It seems like the closer it gets, the harder it is to wait.
I have lists of questions, goals, scenarios and examples. So many things that cannot be answered until I get there, but feel like they cannot wait. I know that the past 10 months have been great for gathering more information about me and this disease; but it’s really hard for me to look back with a positive attitude. To me, those 10 months have been my lowest moments. When I reflect on them I think of sadness, fear, isolation, pain and frustration. One of my many fears is that this next step will take another 10 months.
I miss my friends, going out to dinner, taking my dogs for walks. I miss feeling like myself and having the energy and freedom to do whatever I want. My life is so much different than it was this time last year. Although I was sick, I didn’t know it; I wasn’t where I’m at now.
I thought that in the days before my appointment that I would be elated, ecstatic. Instead, I’m scared. I’m actually starting to get quite nervous. Suddenly I fear that I might be unprepared. I have such high expectations of this appointment expecting a solution in return. What if they can’t help me?
I have been told that the Mayo Clinic doesn’t stop until they get answers; but I’m worn down and fragile. I don’t know what I would do if they let me down. I don’t know how much more testing I can take. It’s getting up in the morning and going through the motions; just trying to get through the day so you’re closer to that day when your test results are in to tell you the next step. I hate living like that. I want to get back to being excited about each day, savoring it until the last hour awake. Being at peace, feeling rested; to feel that again would be divine.
So for now we just wait. Just a little bit more. Patience is a virtue that I have never totally grasped, but I will work on it today. I am thankful that I’m almost there and that my health has kept me fighting this far. I am so thankful for my wonderful husband and for my two little pups, they take such great care of me. I’m thankful for all of my family and friends who support and love me. I look forward to the day when I can share some good news again, and I will make it to that day!
Lots of love,