DEALING WITH DOCTORS: RS09

DEALING WITH DOCTOR’S OFFICES/STAFF/DOCTORS:

This post is part of my Resource Series 2009. –Sasha xoxo.  Also, learn more about my new  consulting services for dealing with an autoimmune disease or chronic illness.

1) FINDING A DOCTOR: Always start with your general doctor’s advice. Don’t feel forced to stick with that doctor. Then branch out to ask any of your other Dr’s advice. If all of that is not possible then here’s my approach: I like progressive teaching hospitals. They are usually up with the current gear and practices.

For example, in LA I would go to UCLA or USC’s website to check out the list of doctors. Most cities have websites with reviews. Also, your health insurance website usually has reviews.

An example search: Type in google “best doctors in (city here)” . I found this site in LA: LA Doctors and even the Yellowpages now has reviews. It goes on from there. [note: Due to my own privacy I am not going to make referrals to my doctors.]

2) Earlier posts were written on this subject.  Links to the most useful ones are on the Resource Series 2009 home page.

3) AT THE OFFICE: You are almost certainly NOT CRAZY. (please ignore that sentence if you’ve spent some time in a psychiatric hospital OR if you are unable to have even 1 friend because no one understands you).

(Read on to get all of the Lessons that will help your Doctor’s Office Exprience Improve Dramatically)—->

1 Year Off Prednisone

Hello All – Sasha here!  To my loyal readers:  I’m sorry I left the online world for so long – but I m sure that anyone reading this could relate.  I felt like I had to crawl back inside my little cave in my mind rather than expressing it out loud or through words.  I needed to sort it out uptairs in my head first.  A ton has happened since I was last really online.

Briefly this is what has happened:  Jax & I are still split up (and yes i am still crying about it 6 months later).  He still lives one apartment away (joy oh joy) no – actually it is comforting but has mae it nearly impossible to move on.  Jax and I still spend time together here and there and I’ve tried several times to do Jax blackouts for 6 weeks at a time, but we’ve never made it past 1 week (on his side also).  But I have begun internet dating and I’ll write all about that in my next post.  It’s been a tough turn of events since I last checked in.  Last I recall I had just left the Emergency Room where they treated me like I am a drug addict.  I have since found a lawyer who is determining if I have a good case against the hospital.

But the biggest changes have been on the diagnosis front and on the body/mind front.  I’ve had CP for almost 7 years now and RA that was diagnosed in late 2007.  Initially, I took prednisone for it and gained 60 pounds in 5 months. Then I was put on a high dose of Methotrexate that poisoned my liver.  I got off that and was then only on Enbrel (I far prefer the regular needle rather than the sure-click).  My mom has many of the health issues I have was diagnosed with RA in October 08 full blown Lupus in November.  Many doctors will say that it is almost impossible to have both diseases.  They say that you usually don’t see bone breakdown in Lupus patients.  But – my family has never turned up normal in any health matter so it’s not so surprising.  I fired my 2nd Rheumatologist and onto the 3rd  – this time at Cedars-Sinai.  The new one is great in some ways, but less thorough in others  – but it will do fine for now.  This month (February 2009) she believes that I have many of the tell-tale signs of Lupus, but it is not yet showing up in my bloodwork.  In other words, she feels pretty confident that I need to go back on Methotrexate to lessen the possible Lupus issues.  She feels it is a large possibility that my different diseases will eventually fall under the header of Lupus.  So now I am back on a regular dose of Methotrexate.

Beyond these updates I will get more into what’s been going on in my mind over the next few weeks.  I will say that my depression blew up to a horrfic degree and I got put on Wellbutrin along with Cymbalta.  The depression got very out of control and I had begun having vivid visions of how I could remove myself from Earth.  I have finally snapped out of that zone and am back on the ground….maybe not solid but certainly back on the ground.

Some things I’m doing to climb out of depression: (Read on to find out!  Also read on for the Prednisone Challenge – What I’m doing to climb out of that blah also) —->

SICK GIRL

I’d like to discuss a book I recently read called SICK GIRL.  The book is an exhausting complainers book by Amy Silverstein who at age 24 suffered congestive heart failure and then received a heart transplant. She ends up living far beyond the expectations of all medical know-how and comes to write a book 17 years post-transplant. This woman is EVERYTHING I NEVER WANT TO BE.  She complains non-stop and is constantly angry at someone, anyone, everyone.  Amy whines on and on about how she refuses to take prednisone because it’ll make her fat.  GET OVER YOURSELF, AMY! She’s certainly more than allowed to complain – and I certainly had the choice of putting the book down…but it was her outlook on things – that drove me nuts.  Amazingly, she got engaged to her boyfriend the moment she rolled out to the ICU after her transplant.  As she writes the book they are still married 18 years later.  Her hubby’s name is Scott and he must be an absolute saint to put up with this nagging, annoying, self-centered twat.  She reminds me of everything i never want to be as a patient or mate.  She feels the world revolves around her although her huge realization is that when she dies life will go on without her.

So why am I bringing up an author/person that I dislike so much???  Because reading her book reminds me that life is all about choices – the small ones we make everyday.  It’s up to ourselves to find peace within ourselves about our disease(s).  It’s our mission, I feel, to remember that EVERYONE is going through some hurdle or difficulty.  It’s our duty, in my opinion, to know deep down that we are not being singled out for torture – everyone has their own cross to bear – as the saying goes.

Amy is outrageously self-righteous and too smart for her own good.  She believes that a doctor’s job is to  make her feel better mentally, to put her at ease.  This is very far off from my view of what a doctor’s job should be.  She makes it seem like she’s the only human being that has ever suffered; that’s ever gone through a battle of her body. Read more of the review Here –>

READERS ROCK

Some days I’m not sure what I’d do without reading the amazing comments by you all.  It lifts me up, reminds me I am not alone, and lulls me to a place where I can actually go to sleep.  Ever since Jax moved out i haven’t been able to get any normal sleep.  I have no incentive to go to bed – except of course my health – but I’m not in the mood to be all “goody” about my health.  I know I am making it all worse, but I’m still so shocked that Jax left that I haven’t found a good place yet.

I do want to mention a few readers comments because they really made me happy/thoughtful/loving..Also, here’s a link to the newly updated Tips Page.  It has links to some key past posts.

I JUST HAPPENED ON YOUR BLOG AND NOTICED YOU ALSO HAVE CP. i THOUGHT i
WAS THE ONLY PERSON WITH SPHINCTER OF ODDI DYSFUNCTION WHICH CAUSES
SEVERE AND CONSTANT PAIN WITH RECURRENT BOUTS OF PANCREATITIS. –Michelle

Wow!!! This one blew me away.  So far I’ve only met one other online pal that has both CP and RA!!  This is incredible because i don’t believe I have ever mentioned that my issue is specifically with my sphincter of oddi!  But you’ve got it spot on.  My DR explained it that it’s like a door that is broken and is always stuck.  Sometimes i swear i can feel the food rushing in.  I know that is not really what’s happening but it feels like hell so i have imagined all sorts of things.  In fact. my CP is so much worse than my RA – but it’s was too depressing to base an entire blog around.  I would love to speak with Michelle offline!

...About 15 years ago I was dx’d with Lupus. I had 5 really hard years of
that disease and miraculously managed to go into remission and was able
to get off all the Lupus meds. I thought my current symptoms were Lupus
rearing it’s ugly head, but no……it had to be RA.
I have really been able to sympathize… –Donna C.

This reader’s been through a lot with lupus and RA.  I’d just like to mention that I couldn’t take methotrexate because it made me soooo sick.  It was literally killing me.  Glad I’m off of it – although I did feel like it got my RA under better control.  I’m going to see the new Rheumy DR on the 23rd.   I can’t wait – i’m so happy I don’t have to go see that pompous jerk DR.  (To read more on methotrexate and me click here).

So, this is what’s going on with Jax and I.. he lives next door (one apartment in between). And we spent all day Saturday together with plans to spend about half of Sunday together.  Admittedly, he’s confused!! Is he coming or going?  I don’t care anymore.  I’m just happy to spend time with him.  He does love me and it’s very obvious.  Also, He helped me out so much this past week prepare my new resumes..and he’s been training me on the items I’m less knowledgeable about (don’t forget we ran/run a company together).  We’ve closed down most of the company sector that he ran with me, but we still have 4 key clients together. You might ask – so what changed that I am not as depressed about it all right now… So what’s the difference?

I talked to one of my brothers this week who seems to know Jax better than Jax knows himself.  He’s the brother that advised me not to shut/slam the door on Jax just because Jax needs space and a massive change.  Earlier, He suggested I wait it out.  Then, when 3 weeks had passed he wasn’t sure what to advise.  Now, at a month out he said I should take the attitude “whatever..” and so I have.  I am happy seeing him and I am finally happy without (not as happy of course).  Jax and I have so much we love to do together that we’ve even bumped into each other out.  I took that as a sign that we really are meant to be together.  Who really knows??

But, now that i have “whatever” plastered in my head I believe it is fine for the moment.  Sure I’d love to kiss Jax, but I see him struggle the same way I am with that stuff.  Maybe we just need space in order to reinvent the sex stuff?? Not sure.. but I will say that I am so happy to hear from Michelle/the reader who has the exact same stuff as me. CP is the worst thing I could ever imagine – no one truly understands the pain of your pancreas hating you so much that it tries to kill you on a moment to moment basis!!!

Love for now,,Sasha…. xoxoxo

ANGER PHASE

I’m starting to get a cold, but took Enbrel anyhow because I was starting to get so swollen and immobile. Stiff like the dead.

So it’s been 3 weeks since Jax and I split up. Now I’m in the anger phase of the grieving process. I’m so angry at Jax for so many things right now. Primarily, I’m angry that he insisted I NEED him-That he loves to be needed. So I let go of my fiercly independent ways and let myself need him. Of course I had no idea he would come to resent it.

So the pain of our split is evolving… But at least I know that these are deep issues of his more than my medical issues as he claimed. Maybe there is hope that someone else is out there for me…

Love Sasha xoxoxo

DARK DAYS

Thank you to all of you who commented on these tough times I’m going through since Jax and I broke up. I heard your words of wisdom and love. I heard that I need to focus only on today. I also heard that no matter how bad this hurts there’s amazing things I can do in the future if I simply believe I can get through this.

Physical pain is never as painful as this even when th Docs compare pancreatic attacks to giving birth. I certainly don’t doubt that. I know I’m suffering from a broken heart. Jax’s mom (who I never met cuz she lives in England) seems equally crushed. My folks are worried about me because I’ve been so dark these past few weeks.

When I first got sick I had tons of friends. I was always having parties. I was surrounded by them and I gave my love. Over time, as my disease of CP progressed they began falling away. Primarily it was because I couldn’t go out and share in good times and bad with them. It became just Jax and I and a number that fits on one hand. I wasn’t bitter or mad. I knew they still all had love for me. But in LA there’s so much to do and you do lose touch with the people you don’t see around much.

I wasn’t worried about spending so much time with Jax. I’m 35 – he’s 38 so I thought we had simply changed our priorities. So, now that Jax and I are no longer, I don’t have a large enough group or posse of freinds to fall back on. I’ve called the ones I do have, but somehow I think it would never be enough people to take this hurt away.

CoincifeI bumped into Jax on the street tonight. It was so odd. After a few beats I realized I was going to cry so I got out of there fast! I felt so stupid. Imagine, at 35 feeling like a school girl! Ugh! It’s so pathetic. So this all led me to my latest decision: I will need to break off even seeing Jax for awhile. I wanted to do it via text but I’ll wait to do it in person.

I saw a new therapist tonight. An AFFORDABLE therapist for once. I’m not sure how he does it but he’s the therapist I met when I heard him on a radio show. I called in last weekend. He agrees with my DR’s that some of my pain issues might stem from lots of sexual abuse as a child. Yes, I said those nasty liitle words Sexual Abuse as a child from more than 3 people. There was extreme violence as well. It’s the entire reason I’ve been working with at-risk teen girls. Even if life is shit I’ve always reached out to be helpful to someone.

The appointment was just an introduction but I felt good about his type of psycotherapy. He even talked a lot!!!

My RA’s in check today. I walked a lot tonight and I’ll do more tomorrow. I just need to lose a lot of weight right now to make myself feel at least a little less crummy.

Over and Out,
Sasha xoxoxo

SINGLE WITH RA

Dear anyone who reads this,

I wish I was on my computer rather than my dang phone so I could link to the wonderful reader comment of Leslie. She reminded me that having a chronic disease forces all of us to see our life differently regardless of our age. Since we become worried that we’ll even be alive in 5 years, we all put intense pressure on ourselves to have life all sorted out (kids, marraige, will, belongings, place in this world). It doesn’t matter what your age is to wonder what will become of us?

I saw our (Jax and mine) couples therapist today. After filling her in on how Jax split up with me she offered the advice to cut off all contact with him and move on. She said if he was going to come back that forcing him out of my life now was a requirement.

But I can’t imagine slamming the door on the man that selflessly took care of me for 3 years. I understand we might never be together again, and although it crushes me, I have a whole life of my own with friends and work. I’ve been accepting every evite invitation and have been forcing myself to go out even if I want to stay home and sleep. I was good at being single before Jax and before these diseases took center stage.

The therapist suggested I cut off having dinners with Jax and to stop sharing the car. I just can’t do that. I’ve stayed friends with most of my exes and I plan on doing the same here with Jax. Truth is I think it’s a bigger and better challenge to remain friends with dinner sometimes and continuing to share the car.

I’m not ready to date yet. I’ll have to get to the stage where in 100% convinced jax is never coming back. I’m nowhere close to that stage yet. I can see the wisdom in cutting it off right now, but I’m simply still hoping Jax changes his mind.

Don’t get me wrong. I don’t think he’ll change his mind for a while. At least a few months if that (but most likely I’ll just have to totally move on).. And if we slowly part rather than immeditely what’s the harm? It allows me the mental ability to get accustomed to being alone without it being 100% of the time right away.

I still need to figure out what to do with the company we shared together. That’ll be hard.

I also called in to a radio show tonight. It was some doctor shapiro talking about how sex has been affected by health. I weeped about Jax to him. Jax had real intimacy issues with me due to my health. I’m thinking this might be the same issue with anyone new. I’m thinking no man or human will be able to deal with my health issues. Of course I can’t be certain, but that’s my fearful gut telling me so.

The radio doctor also offered to help me find affordable therapy. Money’s such an issue right now so that will be huge!

Time for bed. It feels so strange to be alone. Welcome to the single life!
Love Sasha, xoxoxox

RUNNING

I feel like I want to run far, far away. I want to escape my skin, my body, this town. I wanted Jax to come back so badly. Jax probably isn’t coming back. Jax will probably never come back.

I have to move on. I have to come to some realization that Jax has given up on us. He’s given up on being able to deal with my RA or pancreatitis. He’s simply done for now.

I know I have enough work to keep my mind occupied for years. I have good friends and family that have reached out to offer their love. I think I’m now over the shock of the split. Now I’m just so sad about it. Now I realize I have to make my life about totally different things.

I feel so stupid now about sleeping on the couch all day on sundays to recuperate. If I’d have known it would drive Jax away I wouldve forced myself up and forced my body to go along for the ride. I never wouldve complained about feeling so horrible. I never wouldve mentioned I was in pain. I wouldve tried to suck it up and be an adult about it.

I wouldve made a much bigger effort to be sexual with Jax. I wouldve pulled his clothes off every other day and wouldve limited my business trips to one week away instead of 2 months. I wouldve learned how to cook and come to dinner 5 minutes before we needed to eat.

Jax used to make me little snack plates when I was with a client later in the evening or even on weekend days. I always tried to return the favor by making tea plates for him.

I simply can’t believe it. How can this same man who cared so much about how I was – now leave me to go find himself?? Or rather leave me to leave me?

I tried to shut him totally out tonight. I wanted to tell him I needed to totally close the door and not see him at all anymore. I tried to say those words but could not. Instead I’m here in all kinds of pain. I was just thinking about my cousin Sara who is going thru a divorce. She’s so distraught. She has 2 kids and her ex left for another woman. It’s horrible.

i simply feel so sad.
Love Sasha xoxoxo

RA AND DATING

Welcome to the new design for TypeAwithRA site.

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Are you single with RA or CP (chronic pancreatitis)? Have you ever been single with your disease raging and out of control? I can’t imagine living in the wild wild west and I’d certainly be an “old maid” if that were the case.

I’ve been single with RA for only about a week and a half. It’s laughable I know. I haven’t started dating and likely I won’t start dating for quite some time …if ever. I’m 35 and would love to have a family (even if it is a mini-family) but wonder if my health would be too much to put on a kid much less a new mate.

I WANT JAX BACK!!! Jax broke up with me a week and a half ago. Since then we’ve eaten many dinners together and right now he’s asleep on our couch (the one I got for him so he could sleep more comfortably). I don’t know whether to go inside and try to relive old times or see if he wants to go back to his new apartment. I don’t want him to go and clearly he’s torn himself. We were compatible, enjoyed many of the same things but we are total opposites in terms of personalities which he always said worked well.

Ultimately my health made him feel caged up and despite my begging for him to go out, get drunk, and go to strip clubs it still made him feel guilt-ridden. He refused to go out until my health started to get better as of this year. I never want to be the controlling type. I want him to conquer the world and do things he can hardly imagine. I don’t need to be with him every moment. In fact, I’ve been coming up with excuses to be out of my place so he can have more space.

Last night I noticed that he didn’t eat without me so we headed to mcdonalds at 1130pm once I was home.

I’m positive our sex life can be better than when we were together, but he always thought of me as so fragile that it was tough for him to think of me sexually at all. It totally sucks. Many of my past boyfriends remember the sex most of all but think my Type A qualities were too much. It’s ironic to be sure.

My friends are just as torn as Jax is about him coming back. They love him but wonder if he won’t leave me again if we got back together.

I think it’s the exact same issue I’ll have with dating. I feel rotten to the core and so swollen to boot.

I took Enbrel yesterday for the first time in 3 weeks. I think it’ll take longer than 2 weeks before I’m feeling like myself again. I’m trying to guzzle water to get more thin, but this heat is making it worse.

I’d love to cuddle up next to Jax right now, but I feel so antsy like I’ve been on a plane for 6 hours. I can certainly see why he needed to go. Wouldn’t it just be the same with a new guy? I am strong personality-wise but fragile physically.

Now that I’ve been off Enbrel so long I can easily remember what it was like to be undiagnosed. I’m having deep pains in my hands, have an impossible time typing, opening jars, buttoning shirts, holding glasses, going up stairs, doing any repetitive motions like brushing my teeth, removing my makeup, and let’s face it: masturbating. I had to give up the natural method about 2 years ago.

The last time I was with Jax sexually my hand got all cramped up from RA while I was trying to please him (for lack of a better way to describe it).

I find all of this so exhausting! I don’t want to break the cane out again. I want to feel 25 not 85. This is the moment I say “it’s so unfair!!!” But my mom always said “life isn’t fair” and so I just have to move on. From complaining about RA, maybe from Jax… And live in the solution rather than the problem.

Time for bed and the future!
Love Sasha xoxoxo

RA WEEKEND AWAY

Do you like the new design? Feel free to comment below.

It’s been almost 2 weeks since I’ve taken Enbrel. My hands and feet are swollen. My bone joints hurt. But the pain of RA is nothing compared to that of my Jax recently breaking up with me.

My medical issues are vast and overwhelming on a good day. Jax needs time to sort himself out. He’s been living with extreme fear that I might die any minute because that’s how it was for over 3 years. Since he can’t feel my pain level it’s hard for him to believe that I’m getting better. I know I’m getting better because I can feel it physically. It’s almost impossible to describe the terror he was living under and now the release he’s experiencing. He built the panic and fear up for so long that he can’t just sweep away the debris. He needs to exhale and then have more time to figuratively inhale and exhale enough times on his own that he sees he’s no longer living in fear.

This is the key reason he has had to break up. I truly understand what he’s going thru and why he’s got to be on his own for awhile.

Today, Jax and I had a good/important time together. I told him I hoped that the road he’s on leads back to me. He said he also hopes for this. He said it with tears and so I’m certain he meant it. Of course he can’t say for sure if that will happen. I know my 2 diseases are manageable finally but he needs to step away to see this is the case.

I also told Jax that his love alone helped to heal me and helped me de-stress my life. Therefore the least I could do is offer patience and love back to him. I’ve been repeating a mantra “stay strong/stay calm”. Taking this path has made for a beautiful transition – painful but peaceful.

Even though I understand all of this doesn’t make it any easier or less painful. Or maybe it does. I’ve been able to see Jax and talk this week even with the break-up as a result of my positive attitude. And since I’m not ready or willing to move on yet, that works out well. I know there’s a chance I’ll eventually have to move on. Some people say that’s when they met their ideal mate. But what do you do when you think you already have?

I’m very scared of who will take care of me if I do get really sick. There’s no one that would/could be as close as I’d need if I ended up back in th ER. I’m frightened of being alone the rest of my life because who would want such damaged goods (with RA and CP)?

I deeply hope Jax changes his mind. Not because I want him to be my caretaker but because I love him so much. And when you truly love someone you have to be able to let them go. I’m not sure why, but that’s a really good concept cuz it’s about your own security vs. Insecrity.

I’m wondering if we did get back together then the sexual issues we’d been having might very well be a thing of the past. They stemmed from his thinking I was too fragile. Hopefully time apart will show him that it’s not true anymore. I’ve learned how to become strong through my disease – mentally and physically.

We’ve agreed to eat dinner together on the nights we’re both home (he moved 1 apartment down).

I’m just wondering when we’ll have mad, passionate sex again like before all this disease bullshit destroyed us.

Love Sasha xoxoxo