Archive | March 2016

Adding to My Dream Team

Finally saw a Urologist today.  Actually this doctor specialty is the female urology parts!

Anyways, when he first entered the room, he introduces himself (Dr. Richardson) and tells me that he is a hugger.  I got to hug my doctor!  Love that!  So we discuss my problem and what not.  I felt very at ease with him and not rushed into doing anything.  So, of course, there was an exam to see what could be the problem.  He thinks it is the outer area that is inflamed.

He gave me three things to do:

  1. Dance/meditate (MBSR).  I wanted to learn how to meditate and maybe this will help my mind not be so concentrated on the pain.  Pretty much, how he explained it is that I have to accept it.  He is a no-nonsense doctor and told me it won’t be easy.
  2. I have to wash the urethra area with water or Epson salts.  Well, I have water handy so that will have to do.
  3. He asked me to try the lidocaine 2%  to see how I react to it.  I did have estrogen and it burned so he wants to know how the lidocaine reacts.

So that is what I have to do at this moment.  We are doing baby steps to see what happens. I’m so glad I made the appointment and glad my mom got to go with me.  I feel a little at ease but I know I have to relax more and not let everything get to me.

The doctor has a thought that it could be Vulvodynia (Info on vulvodynia).  I’m discovering all these new diseases that I never knew existed!  How about that!?

**DJSpoonieGirl**

Hair…Not the Musical

Lupus is a cruel mystery.  I am a true testimonial to that.  Here, I thought, I could start doing cute hair styles and be ‘girlie’, Lupus starts up with the hair loss cycle again.  As before (meaning before I shaved my hair off), I tried to do the comb over and it frustrated me more than anything.  The thought of ‘is that piece covering?’ lingered inside my head.  I have heard the whispers and seen the stares from people and it hurts.  People, if you are curious, then just ask!  Sheesh!  There is a polite way of asking versus staring at me like a freak.  Unreal.

Anywho, back to now.  So, I thought I would try to let the top grow out and shave the sides.  Well the shaved sides worked out great but letting the top grow long is just a recipe for disaster for me.  I forgot about knots in the hair which lead to finding hairs in my comb (saddness #1).  I run my hands through it and find a handful of hairs (saddness #2). Looking in the mirror and seeing these glaring bald spots staring straight at me (saddness #3).  It made me really sad that my hair is falling out again.  I don’t know if it is the styling products, hairdryer or my last coloring did it in but no matter how you look at it, it’s falling out.  I have said to many people that I am not attached to my hair but I was looking forward to having something.  But yesterday was my last straw!  I was steps to shaving it all off because I was tired of trying to cover.  Thankfully, the woman who does my hair has no reservation in doing what I want.  I told her I want it spikey and I understand that my spots will show.  Hell, they show now!  What’s the difference?  At least, when I leave my house, I know the spots will be visible and I expect that.  Not as before, I was afraid to wear my hat because it would mess up my hair or the wind or whatever.  Now I can just be me.  It is a freeing sensation since I always wanted this haircut and was told no so many times. But now I have it and I am me.

Yes, it is sad that my hair started to fall out again.  I figure Lupus does go through cycles and this is just one of them.  I do mourn for my former self…a lot.  I wish for not having so many pills, doctors, health problems, etc etc but then I think, I met so many great folks, learned so much about autoimmune (not just Lupus), I walk for the causes.

So today being Friday, I’m going to enjoy Friday.  It’s only hair and if people want to stare, maybe I will wave back if I catch them looking at me.  🙂

 

**DJSpoonieGirl**

Radiation – It’s Not Killing Cancer

I know I have posted something similar but I think it deserves to be heard again.  I have been through two rounds of radiation to ‘kill’ cancer cells.  Well, this ‘miracle cure’ does not only kill those cells, it kills healthy ones as well.  On an average person, this may be ok and bounce back…I am not the case.  My immune system is already compromised!  My body was not healed from the first time when they started on the second round.  So the side effects were twice as bad.

Why am I writing about this now?  Because as I type, I am still in pain from urinating almost 30 minutes ago!  My oncologist gave me this cream that doesn’t help.  It burns like shit putting it on but that’s it.  Great, more pain!  Speaking of the oncologist, I see him in April, probably order a CT.  I just wonder if there is any other options than poisoning a body that cannot handle another treatment.  This is making my quality of life miserable!  I hate being afraid of the bathroom, hate being afraid of drinking or eating.  Everything I look at gives me fear of what will happen if I ingest that.  Unless you have been through it, you won’t get it.  Best way I can describe this pain in my urethra is something like this.  If you ever had a catheter and instead of them easily taking it out, they rip it right out.  Yup, you see those stars? That’s what I see when I pee every…single….time.    It’s depressing, makes me so sad and I have become isolated.  I’m done.  Just let cancer take me.  These side effects are just not worth it.  I miss me.  I can understand why cancer patients give up on life.  I’m at the point.  When I talk to my dr, if he cannot give me any other option besides this poisoning, I don’t want it.  I’M DONE!  Yeah, it’s selfish but again, you do not know what I go through with this pain, mentally and physically, everyday.

Now I have this dumb lazy eyelid.  Thankfully it doesn’t hurt like last time but definitely can tell it is not opening all the way.  I take Benadryl for that to keep from getting too swollen.  Plus it helps me stay asleep along with my Ambien.  That’s all I want to do is sleep and hide in my bed or in my room.  I really don’t find much joy in things anymore.  No sex life whatsoever because my drive is gone.  I wouldn’t blame hubby if he left me.  Who would want me?  I’m a walking medical bill that skyrockets into the 10 thousands.  I’m afraid to tell anyone of any other problems I am having since it may lead to another stay at the hospital with them not finding a damn thing.

Just wish I could catch a break at some point.

**DJSpoonieGirl**

Catching Up!

The Hubster had to travel for work this week.  He ended up going to Denver, Colorado! 6-colorado-springs-750xx800-450-0-75 I’m super jealous of that!  Anyways, my week seemed to be the same.  I usually don’t see him during the week as it is.  The night’s are weird but, for me, I’m tired so I just go to sleep.  No biggie.  I know the boys miss him lots.   I know I sound heartless but I usually don’t talk to him during the week since he gets home so late.  This week really is the same as any other week.  Sad, huh?

My right eye has swollen up again. What a hot, sexy mess I am.  I am going to the doctor aga2016-03-09 16.30.39in so they can give me antibiotics that give me diarrhea. I have been taking Benadryl at night.  At least it isn’t as painful as last time.  This morning, though, I woke to no feeling in my fingers on my left hand.  It’s really hard to type when you can’t feel the keys under your hand; then you can’t really see straight since the right eye isn’t focusing right. Again, I’m a hot mess!   Isn’t a messed up autoimmune system so much fun?  But it’s all in our heads or ‘fad’ disease.

Next month I go back to the oncologist to get scheduled for a CT Scan to see what cancer is doing in my body.  I honestly do not want to go through this a 3rd time.  I don’t think my body can handle this anymore.  It’s bad enough I cannot pee without yelping in pain.  It just plain sucks that I am living a life like a person who has IBS but I don’t know what will trigger the moments of bathroom runs.  I do know that anything roughage will give me the runs but that is to be expected.  Still sucks!

But that is part of an AI disease and Cancer kick-asser!  🙂

**DJSpoonieGirl**

Train off Its Tracks

I really don’t know what it is about this morning but something is off.  Not really sure if it is my body or my mind.  It is just sometimes my mind feels like it is in a cloud and there is no way of dissolving it.  Maybe it is Lupus Fog where my concentration is for crap but it’s 7:30am, what am I concentrating to get fog from?  Drinking coffee with vigor?  I know I am a worrier and a high running person but today really doesn’t feel like that.12718392_965358780225099_7555666828802873934_n

I often wonder what would happen if we didn’t have Facebook.  I know I would not be connected to the wonderful friends and support system I have now.  But there is so much anger and bad news every time I turn it on.  Someone got shot, a fire, animals being abused, children missing etc.  Don’t want to get involved with the politics!  So I just hide them (the posts, not my friends) all.  Maybe that is making me feel depressed and not wanting to care.  I really do want to get tested for depression.  A long while back, I did see a therapist and she was awesome!  She had me do homework and journal each day until we met.  Then she got a better job, which I am happy about, but now looking for a new therapist and trusting them, is so hard.  In the back of my mind I’m thinking, is she going to leave again?  Why put my heart and soul and then she abandon me?  Yup, this fear is keeping me back.  It sucks.  Which goes back to my off feeling.  Brain feels all fuzzy and I really just don’t care about other people’s news (good or bad).  It’s like they can tell me X, and I just look at them with blank eyes as it goes over my head.  Maybe it’s comprehension and fog.

Maybe I need a hobby since I sit day in, day out alone at home.  Today, I am going to get my dogs accustomed to their ecollar.  No real training, just 20 mins on then off.  They only use these while we camp but I want to teach them to walk again without the pulling.  i figure by Spring, we can start training since they will be used to having it on their body.

I am just hoping for a good day today.  I try to think positive, good things, etc.  I do some things around the house and then BAM, some joint pain or my favorite, the fallout from radiation in the form of I cannot pee without pain!

Here’s to cutting a girl a break….

**DJSpoonieGirl**