Not having the best of luck in the health dept... I have been hurting in my hips for about a week now.  I am back on steroids and pain meds, but I want to get to the source and find out what's up.  2nd joint related pain in a month!

Hips are still killing me. I have a message in to my endocrinologist about it possibly being pelvic tilt (or hip rotation). It's lasted 3 weeks now with no let up. I am also going in to see my primary care doc and see of it's something else. Hard to get anything done when you can't walk or sit for any length of time..  Standing is fine.

Crying... well cried out at the moment.  Been up all night.  I about fell this evening and I am in excruciating pain... and VERY sad.

Yesterday was Dr. day.  I went to my Endo to see what she could tell me on my hips.  She referred me to her autoimmune disease specialist (My Endo's office specializes in virtually EVERY thing you can imagine) and I had a great visit with her.  She poke me. Pushed all over. Wiggled. Twisted. Bent. Anything she could do to torture me, she did it.  She looked at my body/skin conditions.  Reviewed EVERY medicine I take and have taken in the past 5 or so years.  We discussed family history.  Living conditions.  Eating habits. Daily schedules... Everything you can think of and then sent me off for labs and x-rays.  She said that she would be getting back with me as soon as I got the tests done and labs came back.  Well, I was already hurting, dressed and out, so I decided to go right then and get them out of the way.  By noon, I was finished with it all.  Then the reports started coming in and they didn't look good (I can access my medical charts online and it is awesome sometimes).  I come from a medical background and I didn't like what I was seeing.  It is confirming what I was afraid of... Rheumatoid Arthritis.

Now, some will say that it is no big deal, and I do hope so, I really do, but this is what started my dad on his downward spiral.  He developed RA several years ago and did ok with it for a couple of years.  One day, he started complaining about back pain and went in for a checkup with his RA doc, who sent him in for blood work.  They discovered Lymphoma that day.  Stage 4.  He started chemo by the end of the week.  After the first round, they tested him and his cancer was in full remission... After being off of most of his meds for a while (chemo doesn't mix well with others) they finally started to ease him back onto his normal meds.  Everything was great and then he started his RA medication again.  3 months later, Lymphoma again.  Started chemo again, but this time it didn't touch it.  This time his body added small cell lung cancer to the mix... same thing his dad died from.  2 months later, dad died.  Dad was 70... I am 46.  I am scared ->-bleeped-<-less.

My dreams and desires are dashed at the moment.  My new AI doc charted that she is going to refer me to an RA specialist and will contact me today about it (the bad part of being able to see my charts online) and discuss what is going on.  I already know what the first thing that is going to happen... I am going to have to end my HRT.  There are a lot of studies out about HRT (in menopausal women) and RA and the negative effects of estrogen therapy in controlling RA.  I am heart broken but at the same time, I want to live.  I have waited a lifetime to come out and a lifetime to begin my journey towards becoming the woman that I really am... and now it is being taken from me. 

I haven't slept much since yesterday morning when I got up for my doctors appointment... maybe 3 hours, 4 tops.  I lay in bed, hurting, and think about all of this and want to just wake up and it all be a bad dream.  I am getting ready to take my morning meds and one of them is a valium, maybe I'll get some sleep then.  Maybe not.

Not much has changed.  I am still in excruciating pain with my hips and walking short distances with a cane.  Sometimes I can't even walk at all and spend a lot of time propped up in bed watching television.  On the days that I can get up, I spend with my kiddo, who is home for the summer and trying to be a parent.  UGH.  It is sooo hard to be a parent to a 23 year old.  They are still your baby, but they are adults.

Well... on the hip front.  I got an appointment to see the RA doctor.  Only problem is that I have to wait until July 30th to see one that is in my network.  I could have seen one a week ago, but I would have to have paid for it out of pocket.  Since this may be a lifetime thing, I opted to wait and let my insurance pick up the tab.  I talked with my Endocrinologist and my AI doctors and both of them agreed that it was not likely at all to have anything to do with my HRT and I could discontinue it if I felt like it, but they didn't recommend it (or said it wasn't necessary).  So I am staying on my HRT and going to wing it for now. 

Everything else in life is WONDERFUL!  I have come out to some more friends and it has been well received.  My other health issues are awesome!  Losing weight, losing inches around my waist and rib cage.  My thighs and butt seem bigger, but that might be inflammation, so I am not counting that just yet!  All of my blood work and innards are right where they are suppose to be... just pain.  Once I get that problem licked, I will be golden! 

Anyhow,  that is Rae's day for the day... TTYL

Great. Lying in bed has subjected me to copious amounts of android apps.  I swore up and down that I wouldn't get sucked into Pinterest, but I have.... Omg it is such a time waster!!!

Anyhow, feeling better. May try and get up and do a few things around the house tomorrow. Baby steps...

My baby boy is such a great kiddo! He brought me fresh tea and told me not to worry about dinner. He's going to cook spaghetti!  Better not be spaghetti-o's!

Congrats to Kaitlyn Jenner!

Done.

I am about 1/2 way through the ending process of my HRT therapy.  I have MY reasons for doing this and I wish that I would have found them before I ever started.  I am NOT going to get into my reasoning because I don't want to knock what may possibly be working for some one else.

Do your research on your meds girls!!!


And yes... I am STILL in a tremendous amount of pain.  It is in both knees and ankles as well as the hips.  Praying for relief and an end to this torture.  My docs are working hard on it, as well as myself.  Together, I think we can solve this and correct it.

Just dropping in to say hi... It has been a while since I posted anything and even getting on the forum, but it has been a hard summer for me.  I have been totally off of my HRT since July and I am in a funk like no other.  I still have my hip problems and now have a diagnosis. My bones are dying. But...it is what it is, I can't do anything about it now and I have almost come to accept it.  It was my choice to roll the dice and I did it.  No one to blame but me.  I have seen countless doctors and have countless more to see before I will be walking without pain again.  One of the doctors that I saw flagged me as "High risk medicine use" because of my HRT.  I have been asked about my 'drug' problem several times since and it pisses me off.  When I explain what it REALLY means, I get funky looks and lots of "Uh.... okay..." statements.  The irony of the whole deal is that the same doctor prescribed me pain meds to take 1 every 6 hours and told me to come back in a month if I needed more.  I REALLY want to talk to the medical group that they are with and get that taken off of my medical files, but I am walking a very thin line with the doctor because I am going to have to see them for my RA that I am starting to develop.  Yeah, there are other doctors in town, but this doc is supposedly the best by far.  Everyone recommended them for arthritis issues and I had to wait 3 months to get in to see them as it was...  Other than that... life has really sucked.  Lost two friends in the past 2 months, one to suicide, the other, sudden heart attack. My cousin also died. Accidental suicide is what they finally said it was.  He had taken some meds that didn't mix and fell asleep and never woke up. All of them were younger than me too.  My cousin's death has really hit me the hardest.  He was the first family member that I came out too.  He had been out for a long time and we talked and talked about how I should approach my mother and other family members.  He was my 'gay' rock.  He understood me.  He never diminished what I had to say or how I was feeling.  He was a great guy and I will miss him forever.

*** Edited version. It seems I used non-allowed words.

F'ing F. 

Professionals need to always be professional.  If you are leaving a practice, it would be nice to tell your f'ing patients and not wait until they call for an appointment after your leave to only be told that they no longer have a therapist and need to pick another one from the group.  How hard is it to write a f'ing letter and mail it?  How hard is it to have the other therapists review your case and decide who would be the best fit and arrange for an assessment appointment.  Now I am going to have to start over and go through EVERYTHING again.

I just want to crawl in a f'ing hole and just hide for the rest of my life and eat cheetos.

*

Raelynn:

I read your story this morning.  I am so sorry for your predicament - RA, withdrawing ERT, deaths.  You need good news and I do not know if I can provide anything.  I felt compelled to at least express my sentiments to you to let you know that someone is reading your story and is concerned for you.

I have experienced many bad events and heartaches during my life yet when I see what I have compared to others it puts me in my place that I have no right to complain.

One point of shared experience is that hunt for a replacement doctor.  I had an internist nearly 15 years who handled my case.  I was in a car crash (1999), he insisted I take psychotic meds, I refused, so he wrote a letter telling me to find some other doctor.  Most physicians since then kept me for a few months or so; my current endo has kept me now since 2013 and makes me feel like an old timer.

You are in my thoughts and prayers.

HUGGSS too.

*

Necro-posting! I'm still alive! Anyone interested in updates?

Sent from my SAMSUNG-SM-G870A using Tapatalk

 HUGS Rae That's all I have for you. Many Hugs.

   Thank you for sharing that with us. Sad as it is. It touched my heart and made me want to reach out to you.
   I lost my handicapped son a couple years ago. He lived in a group home down in California near his Mom. I haven't talked to her since leaving there a few months after our divorce so the word got to ma through my daughter. I hadn't seen him in many years and with his handicap he would not have recognized me anyway. But that doesn't mean I didn't love him and wasn't deeply hurt by his passing. It is a horrible feeling and made worse by guilt over my not being able to visit and spend time with him for so long.
   So Rae what I am trying to say is I feel your pain.

  Hugs,
    Jeanette