5.25.2011

Drugs, Drugs and more Drugs

I think I have tried just about every drug out there for RA (rheumatoid Arthritis), Lupus and UCTDIt sure the hell seems like it anyway.  They either don’t work or I am severely allergic to them. I thought it might be interesting to list all of the medications I have tried just in the last 3 years, or shall I say the ones I can remember.  I had a list with all of them but they were on my old computer and I need to get a new hard drive and blah, blah, blah, you know how that story goes. 
So here is the list:

·         Methotroxate
·         Cell Cept
·         Enbrel
·         Rituxan  IV
·         Remicade IV
·         Orencia IV
·         Imuran
·         Indomethacin
·         Azathioprine
·         Mobic
·         Meloxicam
·         Humira IV

So after having tried all of these my rheumatologist wanted me to take a break and see if something else would be coming out soon that I would be able to try. So after few months, he suggested Actemra IV.  Now normally if I am going to have bad reaction it will happen right there during the treatment.  This time it didn’t.  I felt fine, well you know exhausted but nothing major.  My aches and pains went up a bit and so did my exhaustion, but that is totally understandable considering you are having all of these drugs poured into your system.

Well by Sunday I couldn’t breathe. My entire bodice area was so sore I couldn’t handle anything touching it.  When I would breathe, if I took small breaths it wasn’t quite as painful as if I tried to take a full breath.  I kept thinking it would get better or go away. 

Monday I ended up seeing my PCP to see what was going on.  After her examining me she told me she wanted me to go to E.R. and have some blood work done and a CT scan.  She was worried about me having a PE (pulmonary embolism) or that my abdomen might have perforated.  She called ahead to E.R. so that they would know why I was there and what needed to be done.  Oh, the reason she sent me to E.R. was that by the time she was done seeing me it was after hours so basically nothing was open.

Note to self: that doesn’t mean a damn thing to them.  I waited over 3 hrs to get to see the triage and then another 2 hours just to get inside to have a chance to see the E.R. doctor.   I will tell you more about this later. 

So I have tried numerous medications in just about all forms.  I have had pills, IV’s, and have even had to give myself shots.  For the most part these drugs did not work.  If they did they did not last for long at giving me any relief.  So then we would try something new.  It does a get a bit discouraging and overwhelming and sometimes downright depressing once you realize all of the types of things you have tried to do, to get some relief.  And I am just talking about the main drug here, I could probably right several more posts on different types of treatments, herbs, supplements, eating, etc that I have tried as well.  When I ended up in the hospital I was wondering if this could be an allergic reaction to my latest drug that I had just tried…

5.21.2011

Shaking

Essential Tremors, Shakes, call them what you want, I have them and I hate them.
I can remember years ago when I was in grade school I had a friend and her father had the shakes. He was young and it was the first time I had come in contact with someone that had the shakes like that and was young. You know normally you would see someone in their 80’s or 90’s like that. Well, he certainly wasn’t. His family made fun of him and never tried to help him. It always bothered me. I can remember asking my friend what happened or what was wrong and she would laugh and say nothing he is always that way. It broke my heart. I can remember always feeling pity for him. I always felt sorry for him.
To this day when I see someone that has the shakes I still feel that same way, PITY. I feel so bad for them, I know most of them are much older and have lived full productive lives but still, having the shakes is difficult.

For several years now I have had the shakes. At first they kind of came and went. I could “hide” them. Then they seemed to start staying for longer periods of time. Now they are much more noticeable. Not only do they stay all of the time they are now very shaky. There is no way of hiding these shakes. In my mind I am not old. Yes, I am 39 (soon so soon to be 40) but like I mentioned before you never saw young people with shakes, not like this. Unless they were cold or nervous! I can’t tell you how many times someone has said to me “Oh honey it is nothing to be nervous about just take a deep breath and try and calm down.” Or “Oh my are you that cold?” Then I have to explain to them that I have shakes and blah blah blah…

Can you even imagine what it would be like to always be shaking? Try picking up a drink; now try it without spilling it. Try pouring something now without spilling it. Don’t even think about writing, or signing your name. You wanted to button that? Think again. There are many times that I want to do something but because of my shakes I am unable to. I have to put it off till later or another time in hopes that my shakes will simmer down just enough for me to do whatever it is that I wanted to do. I used to make homemade cards that have become almost impossible for me to do. The normal daily activities that we all do and take for granted are not so easily done when one shakes nonstop.

Sometimes typing is even next to impossible. When I first started this blog I thought this would be something that I could do on a semi-regular basis and keep things up… since the shaking has increased not so easily done if you know what I mean.
So here I am many years older from that grade school and I am now “cursed” with them. I always felt PITY for those that had the shakes because I could always imagine what it might be like to have them. I always felt sorry for those people. Funny how things turn out. Don’t you think?

5.03.2011

Description of a Friend

Friends.......They love you,
But they're not your lover
They care for you,
But they're not from your family
They're ready to share your pain,
But they're not your blood relation.

They are........FRIENDS!!!!!

A True friend......
Scolds like a DAD..
Cares like a MOM..
Teases like a SISTER..
Irritates like a BROTHER..
And finally loves you more than a LOVER.



(A very dear friend of mine shared this with me.  I have never heard of a friend being described like this before, but I tell you that is exactly what she was to me. We were BFF's for many years and now have not seen each other in over 3 years.  I miss her, I miss our friendship. We have just recently gotten back in contact with one another and I can only hope that our friendship will grow once again.)