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) —->

PAIN and DEPRESSION II

CHRONIC PAIN & DEPRESSION Part II – SWOLLEN BLOB/RA

Please read Chronic Pain & Depression Part I to get my full background if you are new to the site.  It’s focus is about my other autoimmune disease chronic pancreatitis (CP).

BACKGROUND/So getting you quickly up to speed: It’s been 6 long weeks since Jax split up with me and moved 2 doors down.  It has really shaken me up.  It is not the core reason I am so severely depressed, but it was certainly the catalyst for my deep depression.  Clinical depression is a pretty serious issue as I am coming to learn.  If I don’t get my act together and snap out of it then I could end up with diseases far worse than RA and CP.  Mainly the issue is that Jax leaving has accidentally brought up all of my old childhood BS.  Well, it is not BS at all.  It’s some very heavy sh*%@!!  Sexual abuse comes back at you so many times through your life.  It is so unfair.  My experiences covered many years and with over 4 different people who did not know about any others being so awful at the same time.
But I really don’t want to write about this topic now.

To make matters more complex I recently switched to a new Rheumie (rheumatologist) and am now waiting for the paperwork to go through on the Enbrel.  So i stretched out 1 month of doses of Enbrel to 2 1/2 months.  Naturally, all of the RA symptoms have been coming back full force.  Massively swollen ankles and legs.  My feet are larger than horses hoofs. THE INSANITY is  that I waited an entire week to get the prescription filled.  I am positive I have clinical depression – as is my Dr.  but what to do about it is a totally different story.

IN THIS MOMENT: Since today was my birthday, I invited a small group of friends (5 total) for sushi dinner.  Jax was one of the guests.  I’m so happy I invited him.  All of us had a very nice conversation about politics, silly things and such.  It was great to get out of my own crappy head space.  Even though I am a total dog person I did get a kitty-cat – Guvnor (pronounced with a British accent) and that is helping my blues a lot since he has real needs and I can’t just ignore them.  So far I love the responsibility.  He’s getting used to me and the house so looking forward to taking photos for this site.

OVERVIEW: I imagine it must be very common to have a chronic disease along with depression.  When my RA is untreated or under-treated then I get so extraordinarily tired.  It’s the “I can barely move” tired.  It’s extreme and insane all at once. That causes me to fall behind on work and important things in my life… which leads to more depression until everything mounts to become full-on depression.  I’m at the point now where I have severe insomnia, but so afraid of the sleeping meds that make me fall asleep for 15 hours straight.  It’s probably because I need 15 hours straight of sleep to be ore healthy, but since I am looking for so many hours a day and then doing the work I have for current clients I simply don’t have time for that much sleep.

MY RA STORY: One year ago almost to the day I was diagnosed with severe RA.  The damage was very obvious on the xray and MRI so I was put on steroids (prednisone) and promptly gained 45 pounds.  My doctor was awful and only asked me to stop eating so much. She hadn’t mentioned that I should join a group like weight watchers.  After that rheumie put me on methotrexate (which would also be the plan in case I had lupus).  During that time my relationship w/ Jax was getting harder and more strained.  We had aready gone through three years of the medical roller-coaster with CP & surgeries in order to live. I started to hate my appearance and myself.  It was a very slow process to get here to this place where I am at now.  Before this i had the confidence of steel.  I was the “can do” attitude poster child.  Slowly it all gave way to a haze  –  the haze i find myself in now.

I imagine the path to discovering you have a disease is often like mine.  I certainly didn’t realize it at the time, but now that the dust has settled I realize the whirlwind I had gone through.  I was using a cane all the time.  I couldn’t grab things w/out  much focus and effort. If I had buttons on clothes I would be forced to deal with them but my path was to always buy clothes without laces, buttons, or any small fingers-needed items.  My legs and feet were so giant and swollen at 3 1/2 size their normal shape.   I couldn’t stop sleeping.  At one point when I didn’t know I had RA & I also had untreated pancreatitis I slept 5 days a week and then stressed out the other two while trying to squeeze a week’s worth of client meetings and work into them.  At some point during this I started the doses of enbrel.  Within a few weeks the symptoms of RA went away.  It was a true miracle.  But as you might’ve read I have been off of it twice due to my awful finances.  It’s my own fault for spending all of my money on my huge project working with at-risk teens the past two summers. But when the Enbrel is kicking in then things are good again. I got my new shipment of Enbrel in today.  I am so thrilled and can’t wait for the swelling to go back down.  I’m also looking forward to getting back into a decent sleeping pattern.  I am debating whether to take Wellbutrin (an antidepressant) or not.  I might only need proper sleep to get out of this depression.

Over this weekend I realized my depression only has a small part to do with Jax leaving me.  Mostly it is my fears about no one ever wanting to put up with me.  A larger portion is due to my mind dwelling on my past.  There’s been so much violence and sexual abuse in my story/life that I am often amazed that I’ve even gotten this far in life in general. So Jax is only one small portion of my bigger demons.  He’s been a great friend through this even if he broke up with me.  I know I should let go and lose hope so I can move on faster.  Well, I don’t think it’s actually as easy as that.   He got me through the worst of my medical issues for 4 years.  He’s a gem of a person which is probably making this more tough.

I lost 4 pounds this past week from weight watchers but have been pigging out from my birthday week.  It’s only Monday so I have 4 days to be very careful before the next weight watchers meeting.  Now it’s time to go to bed and see how Guvnor the cat deals with it. Anything to keep my mind off of the core issues.

It’s raining now and very late (5am). The rain sounds beautiful.  Goodnight.
Love, Sasha, xoxoxo

ps – dont forget to read about my life with pancreatitis in Part I.

PAIN/ANTIDEPRESSANTS

If you’ve been reading any of my posts the past 5 weeks then you’ll know that I’ve been severely depressed. I’ve also been looking for work because all of my clients and company work literally dried up the minute the economy started to become terribly worrisome.  All my company contacts have told me that they are being forced to scale back and no longer use contractors.  This is one of the toughest times I have ever gone through that is non-medical. In addition, the love of my life, Jax, split up with me because he could no longer deal with the stresses in my life and he moved next door (one apartment in between) to my old office so he could work on himself.  We had our business together so all this week we’ve been working towards pulling it apart in an organized manner.

On top of this, I take a very low dose of Cymbalta, which is used to treat pain in my case…but I am not on an antidepressant.  (I still get those shocking jolts from Cymbalta).  Tomorrow at the Dr. office I am going to ask for the first time in my life to go on one.  I am a painter on the side and I never wanted to take antidepressants.  I’ve always been afraid it would ruin my creative abilities and urges…but now it has become a matter of life or destruction.  I would never harm myself intentionally, but all my close friends and family know that I injure myself very badly through thought alone.  My health can not hold up under such depressing news on so many fronts. Plus i can’t sleep. I have horrific insomnia and keep sleepwalking although ive not yet heard of anyone else sleepwalking due to enbrel.

I keep falling asleep outside in the chair which has made my RA rage out of control.  I can barely walk again (and will need to use the cane tomorrow) and am looking forward to getting my new shipment of Enbrel in.  My legs and feet are so swollen and I have to take vivarin to stay awake because my body clock has become so tuned in to night hours when I spend 8 hours or ore applying to jobs.

Do you remember the old movie SINGLES?  remember the guy who loses his job and girlfriend so he locks himself up in his apartment and eats crappy food and his place is a dump until somehow he finally gets his life in order?  Well, I’m him right now, but still locked in the apartment mode.  I’m waiting for interviews and hoping something breaks through!!

Finally,the good news is that i started Weight Watchers.  i am not like the lucky people who have taken steroids/prednisone and were able to quickly lose the weight.  For me, the steroids turned OFF my thyroid (I now have hypothyroid) and made it impossible to prevent 45 pounds of weight gain.  I was 130-135 and am now 176!!!  I’ll update my blog each week about my status – My first goal is to go down to 158 puonds which is 10% of my current weight. I am going to Weight Watchers meetings this time with some good friends and I plan on really doing it this time. It’s been exactly 1 year since I started taking steroids.

Thank you for your sweet comments about getting through this dark time.  I do want to write one Jax update.  This past weekend I came to a breaking point where I realized that I need to remove myself from his space.  We were spending a lot of time together even though he broke up with me.  I was loving it – but the times in between were far too painful.  (I just heard a gun go off… oh Hollywood can be so nasty).  A friend told me it was killing me.  So now I have told Jax that I could no longer see him ever again.  I planned on making this true, but much easier said than done. My birthday is this weekend as is Halloween and we’re going to go with friends to the parade here in Hollywood.  Maybe that’s the end of it.  I need to stop having Jax in my life for a bit, but I also don’t want to.  He helped me so much/  It’s so tough to go back to living alone.

Being this depressed absolutely affects my pain level for pancreatitis (CP).  I just have to manage it better.

Love,  Sasha xoxoxoxo

HITTING BOTTOM

If I was allowed to drink then I would be plastered right now.  TOTALLY plastered.  I know… drinking doesn’t solve anything – and i can’t touch even a drop of alcohol with chronic pancreatitis.  Is drinking alcohol also bad for RA?  I never even asked the Dr because I knew I couldn’t drink anyhow.  When I was still allowed to drink i was never into soft stuff like wine.  I was in it to get drunk – I know I sound completely immature right now.  And that’s okay with me.   I’m in a truly dark and horrible place.  My RA is okay and I did see the new Rheum Dr. (known as the rheumie) and she was GREAT!  I really like this doctor.  She is at Cedars-Sinai in Los Angeles.  She didn’t do all of the anal testing which is not always a great thing, but I went in on a mission to get a new scrip for Enbrel and that’s what I got.  I’m now going to take 50mg with that “pen” rather than the 25mg twice a week with a proper needle that you jab into yourself like an old RN pro.
Why, you might be wondering am I in such a bad place?  I know this sounds retarded – i really do but this is the problem which has nothing to do with RA.  This is all about relationship issues stemming from being sick for 3 years.  BUT I’m not sick anymore.  I’m now in the “management” phase… but my whole life just fell apart in one fell swoop.

Essentially 5 weeks ago Jax broke up with me.  He said it was medical reasons.  It really wasn’t but it was a good excuse.  The real reasons?  5 year itch?  5 year flight from committment?  Not sure.  i hadn’t even realized he fell out of love with me.   Now, I had always been super independent before Jax came along.  I even liked being single most of the time.  I painted a lot and had a good network of friends.  Now, after 3 years of being sick my friends can be counted on  one hand.  Of those only 2 can be counted in my hometown.  The others live back in my college town. I had multiple clients running at once.  I had a company with employees, an awesome office, an amazing apartment, and so on.  I was my own self 100%.  i didn’t need to rely on anyone, but I leaned on my friends as they leaned on me because that’s one reason friends stay so close.

Now, after battling for my life while Jax and I lived together he just got “over it”.  He was super supportive throughout the whole ordeal, but now that I am finally feeling better… he breaks up.  Problem #1 is that many of my “friends” left when I got sick.  I know, you must be saying – then they weren’t real friends.  And I suppose they weren’t, but I really need a support team right now and I only have 2 people here to lean on.  Everyone else left when they realized I couldn’t hang out.  They took it personally no matter how much I assured them it was my diseases preventing me from going out.  And it really was.  i couldn’t be superwoman in my free time.  it had taken all I had just to get through a day of work. Problem #2 – i am still beyond upset that Jax left.  I’ve done a really good job of keeping my mouth shut in public, but once I get home I just crumble.  I know I am not the first person to go through a break-up, but this one hurts so bad.  I was totally in love with Jax.  I thought we were a great team since we went through so much together.  I hear that is common – that the couple splits once the sick person is much better.

Now I am simply a total mess.  I can’t stop crying.  I really can’t.  I’m supposed to be a very strong woman.  All my friends (I actually do have a number of friends but they live in different cities) see me as that.  I am known as strong, tough, capable of kicking ass and taking names.  But now… now I am just a lump of stupidity.  I NEVER thought I would be this upset over some guy!!! Who cares that he loved me through my worst?  I simply had hope and faith in humans  – and now i feel so duped, like it was all a show just to prove to himself that he could go through it (subconsciously).

We’d been hanging out more and more these past 7-8 days and I thought it was a good sign, but tonight I saw a woman come over to his apartment.  he lives one apartment away.  No big deal, right?! Except that he told me he was going out with his guy friend and he said if this guy didn’t call him then we’d go see a movie tonight.  We had laready spent the day togethr running errands and having a good time doing it.  I even helped him put up decorations at his new place.  I even asked him to tell me if he was going to start dating then to please let me know so i wouldn’t have to be shocked.  He agreed and said he had zero interest doing that right now.  BULLSH&*(!!  Apparently it has all been a lie.

I know I need to get back to my own life and MOVE ON.  I just don’t know how yet.  I mean, this will certainly help!! Now I have a reason to slam the door shut and not see him at all – but before it was like this odd limbo… trying to be good so he could see that i am not sick anymore. i haven’t had 1 pancreatic attack around him in months.  ive been uber-sweet so he could recall all of the good times.  BUT I had no idea it was like this.  I feel like such an idiot.  I can’t believe I’ve been so fu^%ing sweet to him since he broke up with me.  If I had known it was about a woman then I would have just moved on sooner and stopped crying ages ago.

I know I need to stop crying and buck up – put my “bootstraps on”.  To get on with my own life.  I know I need to do this.  I will no longer be sharing, kind and gentle.  I will simply snip snip snip and cut him the f&** out of my life right away.

I believe it is a woman he works with. And because of the prednisone weight i gained earlier in the year i feel like triple shit.  I am supposed to be 135 but I am 175lbs. I’ve never been fat my whole life, but I know I am now.  Plus, now I feel so ugly.   I’m going with my friend to a weight watcher’s meeting in the morning @ 730am  (it is 445am).  But I can’t even go to sleep.  i am so upset right now.  Its way too late to take a sleeping pill.

Who would ever want to be with me – even once I am healed from this experience?  the mental and physical toll of this is too much.  I simply am very unhappy being on earth right now. don’t get me wrong, I would never do something horrific, but I certainly have thought about how nice it would be to be dead finally.  none of this has killed me yet and I honestly don’t know hwy.  It should have. I mean, I might never be able to have kids.

RA, CP, a metal pump, Dr visits all the time, prescription meds all the time.  I can’t go to far for too long without needing my pump refilled or my Enrbel cold.    Maybe i’ll just walk around Hollywood and try to calm myself down.  I am very un-chill right now.

love is so confusing and messed up,  Sasha… no xoxo’stonight. sorry.

LIGHTING IT UP

A few days have past since the 3 week point that my Jax split up with me.  It’s always interesting how time often sheds new light on a situation.  I’ve also been battling a cold, but I’ll take the Enbrel tomorrow regardless because I feel so swollen.  I have to have 3 different sizes of shoes to be prepared for any stage of RA swelling.

I’ve been in touch via email with Jax’s mom the past year and a half.  She’s hysterical and it’s clear she stirs up drama just so I’ll continue writing to her (Jax hasn’t talked to his mom since May).  I have too much to deal with already between folding my company last month… I don’t think I ever even wrote about that.  I literally lost everything all at once: a job, my company, my boyfriend, and … thank god I am getting it all over at once!

It has felt like my life is out of control.  That is simply too many things to lose all at once!  It’s also clear that Jax isn’t going to be moving back in anytime soon.  It’s also painfully clear that he won’t even know what he wants in his life for at least 3 more months.  So now that the dust has settled from the drama of it all, I will have to pour myself into work (even though I closed my company there is still tons of wrapping up I need to do).

The toughest part right now is that I lost my closest friends due to my diseases. I never had time to maintain those relationships and work.  This is truly one of the hardest times of my life, but since the economy is in the tank – it is only making me a bit more depressed.  My unofficial job is to  keep my spirits high so that I don’t get sick again.

So now I’ll get some sleep and hope I don’t sleepwalk again!

Love, Sasha. xoxox

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

SLEEPWALKING

I started sleepwalking the same week I started on Enbrel. I’ve never been a sleepwalker before. My brother once sleepwalked straight out the door one night as a boy. Not sure where he went, but later that night my pop locked the door and an hour later heard the doorbell when they opened it they couldn’t believe it was johnjohn.

At first it was a simple case of falling asleep in the bathroom on the loo. Then it turned into full blown sleepwalking around the house, eating cereal, and going outside.

I also have had a bizarre habit of finding myself in the most distressing positions when I wake up. My legs straight in the air, my legs crossed but up, and the most common – sitting straight up on the edge of the bed.

Maybe that’s why Jax had to break up (chuckle-chuckle). I’m not on any sleeping pills so really there’s no reason for it.

It’s almost 5am so I’ll just say one last thing. Everyone thinks I should close the door on jAx for now and not talk with him. I don’t think I can do that-particularly after everything he’s given me. Standing by me for four years when I was next to death is something that very few people can understand. He cried literally when I suggested it. My therapist said “you’re not friends!”. But we sure feel like best friends. Whether we’re together or not – we feel like best friends do.

I can’t shut off communication with a human being that did right by me for so long just because my heart is bruised. So yes, he’s having to see the pain it’s causing me to be apart. That’s a real man if you ask me.

There are no right answers here. The only right one is the one in my heart and I can’t walk away now.

Love Sasha xoxoxo

ENBREL BREAKDOWN

Do you lile the new design? I think I do. Feel free to comment.

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How long have you ever accidentally taken a break from Enbrel (or other type like Humira)? Well, I highly don’t recommend it. It’s the single stupidest thing I’ve done in the past few months and that’s saying a lot!!

I was forced to take an Enbrel break because my doctor fired me. Well, not in those exact words. It was more like “find a new physiciam to care for your needs” because I was $300 and some odd dollars short on my bill with him. It so hard juggling money around to different doctors, hospitals from last year, etc. So I tried to get a refill but the DR wouldn’t do it unless I came in – fair enough..but the whole firing process has taken about 3 weeks. (I was wrong in my earlier 2 week estimate).

It is all coming back so quickly!! Swollen, painful red joints. Bumps on my elbows, pain everywhere. My hands on fire. My ankles becoming kankles, my energy level hitting an all-time low to the point I couldn’t go to work today and I was just a giant blob. Worse than a blob – a swollen, screeching blob!

I’ve kept it all to myself instead of sharing it with formerly my Jax. I see why he needed to break up. I do stupid things like not have enough money for the DR and end up in this situation. (Feel free to donate at the donate link above).

It’s been a little over a week since Jax broke up with me and I’m still struggling through the pain of it. It’s so confusing because he moved an apartment away. He comes over for dinners and he’s still the person I most want to spend time with.

I’m trying to spend time out of the building to give us both space… But with my utter exhaustion today I could only muster leaving the house at dinnertime as I had promised him. I didn’t want Jax to see me sick since that’s his primary reason for leaving me.

Things are all confusing and I’m still crying over the split. I understand that if we ever have any chance of working out in the future that he’s got to be on his own right now. I also understand that he may never want to be together again because the medical issues are really too much (for pregnancy). Normally I’d think he’s being too critical… But he’s right. It is so overwhelming and I wish I could run away from myself!!!

I’m in some of those self-loathing days for the first time since I was taking prednisone.

I’m in that funny place where I don’t know up from down.

Love, Sasha. Xoxoxo

Traveling with RA Part2

A wonderful reader emailed me about a followup to my “traveling with RA” and asked some key questions.

Dear Sasha, … I have a wheel chair of my own…I read on American Airlines website you can check it free of charge.  …Checking my own worries me. Also, I did not realize they could provide you with a chair.   Do I need to call the airlines ahead of time if I just want to use one of theirs? And do they let you use it until you actually board the plane? Oh, and thanks for the tip on the Enbrel Traveling case. I didn’t know about it either! I ordered one today, along with a travel sized Sharps container. I had no idea how I would manage that.  Will they search my bags for my medication? …I am probably worrying myself unnecessarily!  Thanks for your blog, it really does help. And I hope everything is going ok for you!

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MY RESPONSE:
• See Traveling with RA Part 1 for the full scoop and info on trolleys and much much more!
• Would you like to add to this travel list?  Simply send a comment and we’ll add it to our list.
• I’m a frequent flier not an expert so please do your own research.  Thanks!

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• Be patient with security
• Don’t be nervous – nervous causes anxiety which then turns into a short fuse, frustration, and forgetfulness. All these are a bad idea for traveling.
• Medical Cards: I use the one from medtronics for my pump (CP) and also for Enbrel (RA).  They tell you that you don’t “need it” , but I’ve found that if I carry it out the whole time I go through security that I have an easier time of it.
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• Read the airlines website for EACH airline you’ll be traveling on.  Be sure your medical containers are approved for travel.
• Please do call the airlines to arrange for their wheelchair.  They can arrange it for you when you arrive, but then it is not 100% certain. Best to prepare properly.
• Yes, they take you to the plane – not just the gate.
• I’ve even had them help me seat by seat to get me on the plane from a wheelchair.
• I prefer to go by wheelchair when I’m exhausted even if I was okay on the trip without my cane even.
• Even without a wheelchair I have had an easy time of it since I am patient and don’t rush TSA or anyone.
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• Don’t worry if they search you – it is part of the process. Let TSA do their job. I smile at them and say polite nice things.
• In other words, don’t stress out –  if you have the proper ID cards for Enbrel or your pump you will be fine  (Plus, Enbrel comes with the travel case or can be ordered).
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• Also, I pay the skycap guy $20 to take care of everything for me including getting the wheelchair.  I like this and it works well for me.  If you don’t tip them that big then they might have to send you to the inside counter and it isn’t worth it. They will carry everything and be very helpful.
• You can usually bring a little bit bigger water for medical reasons if you’ve got a medical card.
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• Resources: TSA (Security) Info about traveling with Special Needs/Medical Conditions
• TSA Wait Time Calculator
• Great general advice from TSA to get through security faster.
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Thanks! Sasha xoxo

Getting Help for R.A.

This weekend has been one of those bummer ones that flies by while I’ve been struggling from hour one to get on a good page. I had to break out the old cane again as I struggled to move around the house. On Saturday Jax played some Rifts game all day and on Sunday he went go-kart racing with his buddies and I was truly happy he got a chance to have a great weekend. We had a nice meal out on Saturday night, but honestly I was such a grump he had a tough job of trying to keep my mind positive. (Read who Jax and I are here).

I wanted to be positive so badly. I worked on my visualization techniques and even wrote out an entire positive future for myself that I am certain will really happen. I am certain that it is already happening. (as I type away my wrists are begging me to stop). My immediate reality is quite different than the visualizing I did. My Dr.’s office readjusted my pump (posts on my pump & chronic pancreatitis). They set it way to low in an effort to have me try out this “remote” which could be amazing if they hadn’t of taken my overall medicine level so darn low.

The other hurdle is PMS – Anytime I have PMS or just start to bleed I get much worse RA. My symptoms are flaring and I feel 90. I slept a lot which reminded me of how much i used to sleep before I got the proper treatment. I’m also waiting to switch doctors but need to have a bit more time to take care of that issue. My current rheumie Dr is such an arrogant prick. His staff are always on edge and I swear they hate everyone. Not the type of environment I like to live in.

As i was feeling sorry for myself (well – only a tad bit as i always work hard to keep my ego in check) and also as I began working on my fundraising work for my project with these incredible at-risk teen girls I wanted to write for a few minutes. Honestly it is so i can take a break from my visualization work. Anyhow, Jax and I just ordered groceries online. We’ve done this about 5 times now from yummy.com and i am so amazed at how good the service is. You can create a list and re-use it again and again. Also, with RA I can hardly walk much less carry heavy groceries from the car (we live on a busy street with only street parking about 2 blocks away). (see blog called “your searching for” with many readers questions answered.)

I found a new comment from a reader Heidi that really affected me. i could totally understand where she is at – so i want to share it with you all. This is only a piece of her comment. She wrote for awhile about how she had to watch her dad suffer her whole life with RA. He is dead now and it was very sad to hear her fears.

I am scared after watching what my father endured for almost 30 years. I now have bumps on the top of both wrists and can barely button my sons shirt. The flare-ups seem to be closer and closer and last longer. I have lost 55 lbs. in the last 9 months. The pain is now getting more prominent in my elbows, toes, hips, etc. I have been running my whole life, it’s sorta like a meditation for me and the thought of not being able to run one day depresses me.

I am looking at getting into UCI in souther california, but I don’t know where I stand with no medical insurance. I guess I just need someone to tell me how important this is. My career may soon be over and I will have to start a new one as my hands seem to be deteriorating before me. Can anyone offer advice please? I would truly appreciate it. – Heidi

I would love to try to be of help to Heidi. Naturally, this is my opinion only and I am not a Dr. First, if you think you have RA which sure sounds like it – you MUST get insurance – job or no job. I can’t imagine the battle ahead if you don’t have it. I’m not sure what state you live in, but perhaps you belong to a group or organization that offers insurance to members. Also, I went to an insurance broker and got an individual plan which costs about the same as if I had it through a job. I got the number from my internist.  (Also, see comments below for great info for Heidi from reader Sheryl and also a wonderful letter from reader Linda).

Next, get the insurance BEFORE getting treated or a diagnosis. right now you don’t officially have a pre-existing condition. This is a very good thing. In fact, as hellish as you might feel about things right now it could really be god looking out for you – and i’m not a religious person at all. But seriously, it is good that you get the insurance clean with nothing like RA on your records.

Then, after you have the insurance (can take a total of 15 days) you can see a doctor within their network. I would always recommend the UCLA Medical Center. They have great ratings and have been great to me. I’m not sure what UCI is – but USC Med Center also has great doctors. Like I said, my Dr. is a prick, otherwise i would recommend him. You can also get a recommendation from the family doctor – I’ve found my best doctors this way. Once you get an appointment there is a key few things to prepare yourself.

Don’t worry about what your friends think about this situation. Don’t worry about being a hypochondriac. Only be concerned with positive solutions. Also, don’t worry yourself sick over this situation. It will only make RA worse if that is what you have. In fact, stress will make everything worse. Work stress is what kicked my RA into high gear.

You might have sero-negative rheumatoid arthritis. (More on this topic here). That means that it won’t show up in bloodwork as traditional RA, but it is just as much RA as any other. This is what happened to me. I had a few years of symptoms but no doctor could offer a solution. I commonly got diagnosed with lupus. I have a few symptoms of lupus that bare not part of RA so the verdict is still out on that one – but I’m confident that my positive visualization will keep some of those symptoms at bay for now. (That’s not to say that thinking positively or negatively would change the seriousness of my health issues, nor do i believe that negative thoughts caused my diseases. sometimes it is environment, stress, genetics, and various other uncontrollable reasons).

The Dr. found that my hands showed the already severe RA damage in my MRI scans. They had me choose a hand. I randomly picked the left one. The bone damage alone allowed my Dr’s to treat me for RA and to give that diagnosis.

I’ve often said that medicine is in the dark ages. Dr’s must rely on bloodwork as the tell-all answer for their entire treatment plan. Some Dr’s may want to try a particular drug, but health insurance companies dictate how Dr’s can perform. It is totally bass ackwards!

I will warn you that initially they may try to put you on prednisone to allow motion to come back to you. This was the worst decision for me and I regret taking it. (More posts about prednisone here).  I wish I knew the side effects ahead of time. I wished I had joined weight watchers at the very start of treatment. I’m finally fitting into size 10 clothes again but it’s been 8 months!!! And forget the weight – what it did to my liver is unthinkable!! The same happened to me on Methotrexate – but once I was on Enbrel i was finally on the path to recovery.

My blog is all about my journey from pre-diagnosis to the early days of discovery. Using the calendar at the right you’ll be able to trace back how I have coped (or not) with all of this. My issue was less about buttons since I have all pull-ons and zippers – but more about work, typing, walking, loving, living. I hope this info helps.   Please let me know.

Love, Sasha xoxoxoxo