... been waiting for better days to come. Not expecting them anytime soon, so, thought I would give the blog a shot anyway. I had to medicate to the max tonight, which is why I am sitting at the computer. Hoping not to be too heavy in the woe is me department. (just read over the blog....eh, little heavy on the woe is me ...fair warning!)
I've been exceptionally sick for several months now, with a deeper decline the last week or so. It really is practically impossible to describe what I go through to a well person. I have a sweet friend in Seattle, Vicki, and we suffer with very similar symptoms. We were comparing war stories the other day. When describing how horrible it has been lately for us both, we agreed on the only way to describe it. It is exactly how we would expect a terminally ill patient to feel, within days of death. (My doctor told me to expect that exact feeling, comparing it to an AIDS patient within two weeks of death) Obviously, this isn't anything a well person experiences. Because of that, it is hard to convey the depths of my condition. When I am at that lowest point, it is scary. Even though, I know that death isn't imminent, it is still the creepiest, eeriest feeling throughout my entire body, with my muscles feeling like they are decomposing (I know I have brought that up several times before). During these times, I also experience extreme nausea and my brain, as a muscle, is too weak to think or process any information.
A few months ago, Vicki asked me to write about grieving the lives we lost. Unfortunately, this is not a one time issue. When it comes, we have to do our best to get through it, only for it to surface again a little further down the road. This has been especially hard for me this past week. It can be unbearable. I remember so crystal clear the real me....almost within reach. Last week, it began with incredible sadness at moving from our last home....and for those that know the reason, you can imagine the thoughts that go through my head. The bitterness is all consuming. After stressing about that, I then thought, "hey, I not only want my old house back, but I want to be well, have a room decorated for my ADORABLE grandchildren, pick them up, take them to parks, and back to Mimi's house for a swim and sleepover". I want my house and I want me...and I want my old speedy Gonzalez power walks and just enough design appointments ~ so much fun!! I want control over my life. I want to make big dinners and have everyone over. I want to fly back to PA to visit my amazing friends and family. I want Jimmy and I to enjoy what should be, the best time of our lives. Empty nesters...with nothing to hold us back from coming and going as we please. Since I got sick at 48, we were completely robbed of what we worked our entire lives for.
I miss my lifetime friends horribly. In the past few years, I have painted myself in the corner and distanced myself from everyone. Being sick as I have been, it is hard to have a conversation and put on a show, like I am the old me. It is impossible. Because of this, I prefer not to call because of all that I am going through. There is nothing anyone can do or say to help, so it is kind of awkward. I am not one to call and cry on anyone's shoulder. Let's face it, after seven years that would get old real fast. Not to mention, when my brain is feeling especially weak, the calls are just too much work. I know that sounds crazy to a well person, but it is true. UGH!!!! So hard to believe that I have created such a distance from all my favorite people in the world...all my doing.
Luckily, I do have occasional fun catch up calls. They are so far and few between. My brain has to feel strong, as well as my body. The excitement of these calls can take a huge toll on me. Looking so forward to the next one....who will it be????
My neurologist received the results from my spinal cord fluid tests. Unfortunately, there wasn't anything to explain my high CSF pressure around my brain. It is double what it should be, but not at the very serious level yet. He plans on doing routine spinal taps every few months to monitor the number.
I saw my endocrinologist and was so happy he didn't put me on insulin, which he almost did on my previous appt. My numbers have improved, but by a minuscule amount. Lucky for me, that was enough for him to hold off. On the flip side, he said that my kidneys function tests came back above normal for the first time. He will be retesting that through blood work every three months.
Friday is my endoscopy to biopsy my Barrett's Esophagus, but not expecting any problems.
So, anyway, I am still on the Words With Friends kick! It is so much fun. I play with some friends, Beth, Barb and crazy Marie. Marie and I sometimes have as many as ten games going at once. In our case, the game is secondary since we spend most of the time instant messaging. Last Friday, Marie was unavailable and I was itching to play. I had WWF find a random opponent for me to play. They set me up with a woman that is insanely good at this game. I hate to think what my blood pressure was!! It has been so much fun playing her too!! After a while with her,my brain starts waving a white flag!! If any you guys want to play, my user name is coralspringsmimi ~ hey, I'm a Mimi and proud of it!!
The medication was great to get me up and posting again, but it's time to get back to bed. In the end, I guess this post is more geared to my very sick readers. This is a very, very hard life. I know they hear me loud and clear.
Before I go, I want to think of something happy. Hhhmmm, let's see...hhhmm, still thinking....uuummm....this is crazy, I know there must be a hundred things I could think of...well, obviously my precious little grandchildren are the happiest times...EVER! Just thinking about them, or hearing their latest funny stories is always great medicine.... and,I could even operate heavy machinery at the same time....take that Pfizer!
Sorry about the heavy post, it is what it is and I know my sick readers need to hear there are others like them. I am staying as horizontal and still as possible. Hoping to be back with a more fun post....XO
One more thing....I mentioned a few weeks ago, that I deleted my more personal blog. A blog intended for chronically ill, their caregivers and others that have been through some type of health hell and back. I deleted it when I discovered that it popped up when my name was googled. I could have died when I realized it was so accessible and public :( In talking about this with my son, Ryan, I am pretty sure I can set it up again, keeping it private ~ invitation only. The past few weeks, I really needed that personal blog to go to and unload things I wouldn't post on here. When I am up to navigating my way through the set up, I'll get one going again. I will let you know and ask, once again, who would like to be included.
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