reddutchgirl's Journal

I will be OK anyway as everything has a way of working itself out.  I know that during this very dark phase that I have learned a lot of things about who I am.  I'm not going to put on any masks anymore, no strength for it.  We all have many masks; the one we wear to job interviews, the one when we deal with telemarketers, nosy neighbors, and the list goes on and on.  I'm not going to apologize for how I feel either.  I'm not feeling joy, so I will not lie about it.  This is living with disease, many of them and this is my difficult time.

The most embarrassing thing happened at my hemo appt. yesterday.  Of course most of the docs called in sick and the NP was seeing all the patients and we are talking about a place that has 30 numbered rooms.  3 hours, it took 3 hours for the NP to get to me and I had my 5 year old with me; fun, fun.  I knew, I could feel it, I franticly looked for a water fountain (none) found a soda machine.  Dug in my wallet and only had 50 cents, I was praying all the way down the hall that it was only 50 cents.  It was sold out.  Uh oh, I'm in some serious trouble.  My mestinon was wearing off and I was really dizzy, unstable on my feet, had to take my next dose (that was an hour late).  Finally NP comes in and I ask for water.  She can't get it because she has  to explain why it took so long.  Next it is the lung thing and my blood abnormalities.  She did explain the MRI and I do have a ruptured disk, arthritis and something else I couldn't remember because at this time I was going down and fast.  She asks if I can do a phlebotomy that day and I told her not with the MG and missing my mestinon.  Then she talks about that and how the CT scan shows abnormalities in my thymus region.  Nothing but good news.  Finally it is time to check out and make an appt. for the phlebotomy.  Wouldn't you know there is someone standing at the window?  No clue as to what she was doing but it was taking a very long time and standing there was getting difficult.  Down I went, a very strong nurse caught me by one arm (that has a very nice bruise now) and they had to get a wheelchair.  Wheelchair!!!!!  I was so embarrased that I cried a little, silent tears that I was able to stop this time because of the look on my son's face.

One nurse gets me some water and I take my meds and they want to know how long it will be for it to take effect.  40 minutes.  But I have to have food or I will have the WORST diarrhea.  I convice them that I have food in my car and let them wheel me down to the exit, uggh.  I SLOWLY walked with the boy to the car and sat in the car for about 5 minutes and drove Gondalier's, which was the closest place to eat.  At least we did have a very nice meal and Tristan just loved it.  I got some food on my belly and had enough time for the mestinon to kick in before I had to drive 15 miles on curvy country roads.  Got home just in time, someone was definately looking out for me. 

I was supposed to go this morning for the phlebotomy, but my platelets were bottomed out as my iron was also (that's normal with PV), and I was just plain not feeling well enough to drive anywhere today.    I guess I'm a bad patient, but I had the feeling that the treatment would make me feel much worse and that is the reason that I could find noone to drive me.  Because I shouldn't go.  I'm probably going to get into trouble, but I don't care.  I'm not going to get disability the first time anyway, I shouldn't have to do things that make me uncomfortable.

I really do think that the clouds may be lifting.  I feel like crud, but things are working out and not everything is a wreck right now.  The kittens are starting to really move around now.  They can get out of their box and one crawled under the door and all the way into my kitchen; which is quite a long distance for a tiny kitten.  They are very cute and I love having the new life around.  I know that very soon they will be annoying, so I will appreciate these times for now.