MEETUP LOS ANGELES

12 07 2009

Here’s an article sent to me by the National Pancreas Foundation’s Newsletter about dealing with keeping your job when you have chronic pain: “Protecting Your Job While Coping With a Chronic Illness

The Hollywood Chronic Pain Support Group Logo

The Los Angeles  – Hollywood Chronic Pain Support Group will have it’s very first meeting AUGUST 2nd, (Sunday) at 6:30pm-9pm.  Join and RSVP here.

Today, after getting fed up with the utter lack of support groups for anyone in my situation with multiple autoimmune diseases OR chronic pain – I decided it’s about time I take some action.  My blog is called “Type A” with RA afterall.  And being a good Type A person – I feel it’s my duty.  Not that I have the energy to do this – but I need to reach out so badly that I’ve decided to spend my energies on an actual support group rather than continuing my never-ending search.  Also, I want a place where I can actually talk about forced sober living with pancreatitis, death and pancreatitis, what to eat with any autoimmune disease, what actually helps for lupus, death and lupus, and all kinds of things that really matter to me.  Beyond that, after my last almost meeting I had received quite a number of emails asking when the next meeting would be.  So below I have pasted the exact text that is at this link on the new meetup page.- but from this link you can sign-up to attend.  We’ll welcome any and all out of town guests.   If you run a blog, could you mention this meetup?  Well, I have my first client all week – so I better get on it.   – Love, Sasha xoxo

This is the welcome message I wrote:

Welcome to the Hollywood Chronic Pain Support Group!
Thanks so much for joining- You are truly not alone!

We look forward to having you at our next meeting. We are brand-spankin’ new group, but committed to getting together once a month to talk about our struggles, triumphs and lives.  Please RSVP for our next meeting.

I’m Sasha, your Group Organizer.  I almost wrote “reluctant group organizer” because I live with 4 diseases that often take me down for three days at a time.  I have Lupus, Rheumatoid Arthritis, Chronic Pancreatitis, and Diabetes Type 2.  I have enough energy to get the group started, but as we begin to meet I will ask each member to take on a very small role of participation.  This way it will be more doable and sustainable to meet each month – I know we all need it!

I was surprised or rather, shocked that there are so few support groups around the globe.  I have searched for quite some time to find a support group here in Los Angeles.  I’m guessing that you might have done the same.  The meetings will be structured so that we all get the very most out of them.  Everyone likes to have snacks and drinks, but if you’re like me – you don’t know what you’d say without some icebreakers.  For this reason we will have a guest speaker briefly give their personal story followed by individual sharing on a volunteer basis.

Please Note: I’ve currently closed the group mailing list until we have a member managing the list.  I can only do so much – –

SOME BASIC AGREEMENTS:
1) In order to best serve the group we ask that caregivers do not attend with you – unless you are a caregiver and your mate is not going to be attending our group.

2) Each meeting we’ll pass the hat to donate what we can to the organizers.

3) If you’re seeking anonymity – we will honor your request.

4) We’ll all respect each others abilities.  Each of us may come to be temporarily too ill to fulfill our role/responsibilities.  We’ll all help out.

END ###

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HITTING BOTTOM

25 10 2008

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.





Getting Help for R.A.

25 08 2008

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





Let the Pain Pass

3 07 2008

I just returned from a long trip to Texas.  It was partially work and partially down time to help my folks who just moved in from a far away place.  My mom said she could see the evil pattern of pain very clearly.  She noticed that when I’m in pain I am cranky and on a short-leash.  She said it was amazing to see how the medicine affected my overall self so dramatically.  She said it was like watching someone entering the ER Room in pain (she’s a nurse) and then within an hour seeing them return to themself again.  I sincerely hope it’s not like seeing me get high or something creepy like that.  I never ever drink even a drop so I guess she can’t compare it to being drunk… (well, but I did a lot of that from 9-19 yrs. old)

It’s been so wonderful to see Jax again after so long.  I missed Jax so much and got so depressed when I returned home and my body caved in and needed the sleep.  in fact, because I can be a total idiot – I only brought enough medication for the original trip.  I was forced to extend my trip so that i wouldnt’ get sick… but post facto realized that I didn’t have enough medicine.  It was the weekend so not possible to fedex.  in the end i went without Synthroid for four days and Cymbalta for 3 days.  Cymbalta always makes me feel loopy and crazy if I forget even 1 dose.  It gives me those odd body jerks and brain freezes when I skip 2 doses.. so you might imagine by day 3…. So I slept this past 3 days.  i couldn’t help it even though I am desperate to get new clients.  I knew I was shooting myself in the foot.   Also, Jax and I missed couples therapy this week as a result.

I have a HUGE project coming up at the end of July-mid August.  I am nowhere near ready yet.  I do feel like I am getting stronger and better everyday.  I’ve finally lost weight thanks to the Synthroid – and I can see that with more exercise I will go even lower.   The project could bust my balls to the point of death – but it is so important and I need to finish it.

I feel like I am in between two lives right now.  The one I used to be and can still sometimes cling to – and the other  – this new person who has to let it go when I sleep for four days straight, or keel over in pain from a pancreatic attack then pace around a friends house for an hour until the medicine works.  But it also seems like there is a third life bubbling to the surface.  This is the one I am the least familiar with.  This side of me eats only healthy foods, exercises, fixates on healthy choices, and battles my health insurance company.  This is the new side of me that wants a baby and wants to live for many years.  The other two parts of me are too tired and in too much pain to go on.

The  last thing I’ll mention is that Jax seems very distant.  He is always so good to me and even more so since I’ve been home, but he said that i look like I don’t know where i am.  When he said it – it was very true.  The clash of medicines and pain in my body had truly disoriented me.  Now i know exactly where I am – HOME.  the home that Jax and I have built with our love.  (as cheesy as you might think that sounds).

The trick is to always let the pain pass before saying anything important.

Love, Sasha xoxoxo





Giggling and Paranoia

18 11 2007

veeabs.jpg I dragged myself to the doctor this morning. I had gotten a call for work on friday but they must’ve found someone right away, so this week is just going to have to be uber-productive for me here rather than out. Back to the doc (least favorite subject)… She can be warm and bubbly but then turn stern and cold. This RA doc is good, but I’m bored with all docs. She tells me the prednisone has made me fat along with eating too much. I know she’s right but I wanted to argue about how she made me take that f-ing drug for the past 3 months. She’s going to keep me on methotrexate and also she begun the process of blood work and tb test to put me on embrel. I never heard of that drug until 3 weeks ago. This is all very overwhelming.

Jax and I have been going to therapy which was so exhausting last week. I had to tell my life story up to my 35 years now. I don’t think I got pas 13 since it is so dramatic. My story doesn’t seem that different from others with sexual abuse and physical violence laid out for so many years.

One theory is that it caused some part of my 2 chronic illnesses. I’m not sure how much is genetic vs environmental vs chemical vs who knows… I also find dwelling on the past takes me out of living for right now, so it’s not something I allow myself to get caught up in.

Jax knows many of the horror stories. One of my 3 brothers is schizophrenic. He’s so sweet and lovely now as a 40 yr. Old, but when he was a kid up to 30 he was a beast. He was so violent that he tried to kill me and another brother Clive on many occasions. I mean this very literally with no exaggeration of the truth.

Jax listened to me tell my story in a cold and distant way. I didn’t want to get wrapped up in it. I told my history from a distant planet so I don’t have to feel all of it all over again. It causes such horrible nightmares if I do let it get to me that it simply isn’t worth getting emotional over.

I wonder how much of this site Jax has read. Does he know how badly I want to tear his clothes off when we wrap up for the evening? Does he know how badly I want to toss flowers and mellow music through our room so he can toss me down and makeup/make-out? I’m so sorry I don’t know how to cook. I’d put some aphrodisiac in the mix.

I asked Jax to get me stoned since I can’t ever drink again. I hadn’t been high since I was 19. So this weekend we tried it out. I had lovely thoughts about him and the world, but it makes me really hallucinate for about 1.5 hrs. I lost track of time and spacial awareness. I usually become paranoid. I wonder how common this is. The paranoia doesn’t last more than the initial hour and a half. I felt safe and giggled non-stop. The wall and everything around me became a cubist painting and I couldn’t stop asking what time it was since my sense of time was so dramatically altered. Jax was laughing. It was a fun time.

if you’re wondering how or why I hadn’t done it since I was 19, I had done so much by 19 that I needed to dry out. I became sober when I was 19. At the time it was highly unusual but there were some people my age. There was a deep sense of camaraderie – oh and of course – pain.

it allowed me to be highly focused on my career and to excel beyond normal conventions. I’m proud of it. The only time I drank again was when I was 9 years sober. It was very monitored and not an issue. I loved white russians and gin and tonics, but it was not to be… 6 months later I had acute pancreatitis and i’ll never drink a drop in my life. The only reason I hadn’t smoked pot in 16 years is because it made me so intensely paranoid. I had some bad experiences.

I wouldn’t say I’ve changed my mind about that. I think it will be very rare indeed that I do it again anytime soon.

-sasha