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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AUTOIMMUNE DISEASES GALORE (Part I)

27 05 2009

AUTOIMMUNE DISEASES GALORE (Part I)

Thank you to all of you wonderful readers out there who have sent the loveliest messages to me.  Encouraging words are  awesome, but knowing that behind each email, comment, or call that there’s someone who knows my physical and often my mental pain – that’s amazing.  As many of you would concur  – I would not wish the pain of RA, CP, or any pain of the heart on anyone.  

THE OVERVIEW

My heart and spirit are much lighter today then in many months.  Why the difference?  First, I was pulled off of Wellbutrin (an anti-depressant) and within 7 days my entire outlook felt brighter then it has since November (when I went on it).  I am glad i tried it out – I really did need to be on anti-depressants at the time… but I am shocked at how suicidal it eventually made me feel.  I broke all of the glass in my kitchen, cut up my arm really badly (on purpose), then cut up my legs and other arm when that didn’t seem to do the trick (not to die, but simply to cause myself that numbing pain that all cutters know so well).   It was a nightmare, but for the first time I see it was really a call for help.  I needed help so badly.  I was/am deeply lucky Jax (my ex-boyfriend and best friend) heard all the glass breaking because he came over and helped me clean up.  Then he called my parents and doctors.  Of course I feared he’d want to stay far as hell away from me after that but it’s had an odd effect I’ll write about in a minute.

So this is the state of things now:  I just got diagnosed with my 4th autoimmune disease: DIABETES!  I had pre-diabetes for the past year, but now it is full-blown diabetes.  This is the cause of my never-ending weight battle.  Now I’ll still have to work out 3-4 times a week, but at least I’ve begun moving the scale (and not just under the table).  So here’s my current autoiummune disease list: Rheumatoid Arthritis, Interstitial Cystitis, Hypothyroid, Diabetes 2 and then Chronic Pancreatitis. And I also have the tentative Lupus Dx sitting in the wings.  I always wonder if it all tied to Lupus.  Anyhow, the news did not shake me the way i would’ve thought.  Now I think it is all hysterical.  I mean, it’s literally gotten absurd.  (Read more about my personal life on this subject here)  I’m sure it’s all related in some way that modern medicine can’t decode. 

 

THE DEPRESSION/GETTING HELP

Now, about my severe depression.  I am feeling a lot better, but my Dr’s have told me it is very usual to fall into this trap AFTER the pain is finally under control.   Read the rest of this entry »





RESOURCE SERIES 2009: RS09

11 03 2009

RESOURCE SERIES 2009: HOME PAGE

Hi to all.  I want to tell you about my brand new dating experiences from this past weekend, but I have far more pressing issues that I want to discuss.   Recently, a number of readers have written in that either they or a person they love deeply is in the painful stage of suffering from either chronic pancreatitis, Lupus, or RA.  So today I’m starting the RESOURCE SERIES 2009 chock full of  resources, suggestions, and help for you whether you are the patient or the caretaker/caregiver of someone living with chronic pain.

I’ve also decided to begin a consulting business to help patients like me, but those that are at the start of the cycle of getting a doctor, knowledge, help, and some answers.  Please click on my new page Q&A for info on how you can sign up for this service.    If my site has been useful to you in some way please consider donating – any amount will help dramatically.

  • DEALING WITH DOCTOR’S OFFICES/STAFF/DOCTORS
    The main issue that keeps coming up in the comments from you all is that you are in a viscous pain cycle with no end in sight – and too boot the doctors and staff are treating you poorly.  Since I’m not a doctor, I can’t help to figure out your disease, but I can offer help in dealing with life.  Each of the following links to an entire page of awesome/incredible info that you need to know.
  • Coming Soon: Organizations that help you if you’re seeking financial assistance for your medications.  Also links to all of the dating and living w/ a lover when you have a chronic disease.  AND Don’t forget I can be hired as your own personal assistant and I’ll  deal with these issues for you.  Also a full round-up of the government’s SSI/SSA disabilities policies.

OTHER LINKS TO RESOURCE PAGES

Here you’ll find answers to everything from how to travel with medications and RA, losing weight on Prednisone, neuro-spinal stimulators, intrathecal pumps, J-tubes, and much much more.  If I didn’t answer your question here then leave a comment OR consider hiring me as you personal consultant to get all the answers you need about getting disability checks, financial assistance for medications and also with how to deal with health insurance companies, plus much more.   The page Medical Definitions can help with any terminology you are unfamiliar with.              

DO YOU HAVE A A COMMENT OR STORY YOU’D LIKE TO SHARE?  PLEASE LEAVE A COMMENT BELOW.

Love Sasha. xoxo





DEALING WITH DOCTORS: RS09

11 03 2009

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)—-> Read the rest of this entry »





Dx LUPUS

14 12 2008

I’ve had a tough week.  I’m working hard at staying positive, but it is unavoidable to have some pitfalls along the way – that’s how it always goes for the first couple of weeks after an ER or hospital visit.  I went in for a severe pancreatic attack because of my chronic pancreatitis.  I didn’t get treated, the hospital lied to me about calling my doctors and after 4 hours of screaming & writhing in pain I eventually had to take my own medicine and left.  My pain management doctor is furious and said they gave me the “drug addict” treatment which means that the ER team thought I was faking it so I could get meds.  Forget all of the facts 1) my doctor called ahead telling them to expect me.  2) I was in so much pain I was hyperventilating and literally screaming/crying.  3) I was severely dehydrated and was upchucking bile.  4) I haven’t been to the ER for a year and a half.  5) I gave them 3 of my doctor’s phone numbers and they didn’t call a single one but claimed they did.  …and the list goes on.

Jax found out I was in the ER from our building’s security guard.  He’s been so sweet ever since then and has even written xo’s on his text messages.  I truly hope that he chnages his mind about splitting up and realizes we made such a great team (and still do even as friends).  But this post isn’t about Jax or my severe depression or my new anti-depressants as a result.    This post isn’t even going to be about the horrific treatment I get in ER’s because pancreatitis does not sow up in my blood work.  Nope – this post is also not going to be about sex or the lack therein.  It won’t even be about my small vctories making friends old and new and reclaiming my life.  It’s also not going to be about my RA limbo due to changing prescriptions ofEnbrel and thus another lovely month of being off Enbrel more than on. I’m not even going to talk about the anti-depressan Wellbutrin causing these bizarre spacey-head episodes where I feel like my brain is floating in and out of reality.

This post is going to be about the facts.  My mom at age 65 was just diagnosed with RA.  Her hands are gnarled and her fingers and jointy and f–ed up due to it. But it still doesn’t show up in her blood work.  Then, the day of my ER visit she had a pancreatic attack for the first time in her life – but the bloodwork and MRI show no issues with her pancreas.  BUT she was just diagnosed with Lupus at age 65.  She has EVERYTHING I have except she also has heart issues.  So essentially, Lupus did not show u in her bloodwork until she was 65 years old but she’s had it all along.  Dr’s rely too much on bloodwork.  It’s a flawed system.  There’s got to be another way.  I understand they must rely on blood lab results for health insurance reasons… My general doc says the likelihood/chances that I have Lupus even though it’s not showing up in my bloodwork just shot through the roof.  In a way it would be a huge relief to be able to tie all of my autoimmune diseases together under one roof.  My Dr said it makes sense given that the pancreatitis and RA don’t show up in my bloodwork either.  I’ve simply had the marker for inflamation through the roof – as did my mom in her lab results for years.

I am torn between sadness, confusion, and a deep desire to grab the net hot man I see and ask him to have sex with me right now while I still can before my body falls part even more.    I’m going to start dating via match.com or maybe nerve.com.  The only thing getting me through right now is faith and the belief that I’ll find someone out there that won’t be afraid of breaking me in two when we are shagging or something more romantic. I’m just hoping I don’t scare any prospects away.  Now I just want to go to sleep.

Love, Sasha xoxoxoxo





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





Traveling with Enbrel and a Pump

21 08 2008

my left foot is swollen today. my brain feels swollen with a rough headache. i just got home from my long work trip. I’m just exhausted. it has been an amazing experience but nowhere close to being over. I could tell you loads about the trip and the journey, missing my Jax, my house, my own dust and grime – rather than the hotels…but instead I’ve decided to tell you that the medical companies try to put so much fear into people about traveling with Enbrel – but don’t believe the hype. As a small side note to be regular readers – I believe I have lost a ton of weight on my trip, but I am too afraid to weigh myself. Has that ever happened to you? It’s been 8 months off of steroids – but it still affects my body in a negative way. I hate that prednisone and I will never believe a doctor again who says there is no alternative. It just is not simply true in my non-medical opinion. There’s always another path… Steroids are just so easy to tell a patient to take… we all want instant results from our pain and that is what it offers… but it is not worth it!!!

Now, on the the flying routine: I fly so frequently that soon I will have a chair named after me. My trips are long so it requires me to bring a large stash of meds, enbrel, used needle carrier and to prepare months in advance with Dr appointments, intrathecal pump refills, plus stuff packed away for any type of emergency.

On this trip I tried to order Enbrel this way: 1box for the hotel and 1 box for my house. They told me that the insurance had to be filed as an “away” stay and that I would need to call them and on and on… BUT my life is far too complex to waste time dealing with BS. So I was frightened but I ordered all the Enbrel for my hotel. I always stay at a hotel with a fridge in the room. For me it is mandatory due to meds, food diet, and general level of well being.

The “specialty” (pain in the ass) phone pharmacy told me that they were worried about me traveling with the needles on the flight. I have now done it at least 6 times and I am no longer worried at all. You have to be prepared to be fully searched – which I fully expect every time. If you go into the airport thinking you should glide through then you are going to have a BAD DAY. I don’t even mind security. I make jokes to myself about the delightfully lesbian guards. They each have their own style of hand-searching me. (I refuse to go through the metal detector with my pump – REFUSE… they would have to drag me through it themselves after searching my anal region to get me to do it – there’s morphine in my pump and I refuse to mess around with those kinds of electronics. So traveling with a pump is easy for me as long as you have your medical card.

But for RA I’ve found that as long as you look secure in your plan then you’ll be totally fine. I put my enbrel in my travel pack with the 3 ice packs they provided. I have the Enbrel card in that travel kit that I have had to show to lower level TSA. But higher level TSA don’t even blink and wave you by. They’ve seen it all before. Also: did you know that you CAN bring water on if you cite medical reasons? it only works with a medical card like the one in the Enbrel case or my Pump card – laminate it first – it makes it seem more official.

Before i had my pump for CP I was facing the need to fly with an IV tower for a full year. I was going to have a stomach tube put in for a whole year! What a major non-workable scenario. Luckily my Shrink told my medical doctor not to do it- she was terrified I would kill myself as a result because she wrote “this patient loves working and the need for the IV tower would remove that ability. I urge you not to perform the J-Tube procedure”.

Back to traveling… When my RA is bad I always ask for a wheelchair at skycap. I don’t mess around – this way I won’t miss my flight. Also, it is handy to give skycap $20 right away – they are happy and will take care of you in front of anyone if you need. They completely take care of the luggage no questions asked.

Take my advice. Make your life easy use these steps for airport ease:

(Also read more blog updates about my life with RA and pancreatitis on this site)

RA=Rheumatoid Arthritis CP= Chronic Pancreatitis

  1. RA – Get Enbrel Travel kit from pharmacy or pharmaceutical
  2. RA – put your enbrel on ice in the cooler pack
  3. RA- Only take as much enbrel as needed for trip + 1 extra in case of delays
  4. RA-Keep Enbrel in smaller box-it protects it best
  5. RA – defrost ice pack fully 2 days before return trip (if none left)
  6. RA – Laminate all medical cards
  7. Always travel with health insurance card
  8. Check your out-of state coverage. Some companies like mine hate to pay you back for outta state ER visits.
  9. CP/Possibly RA: Don’t bother with metal detector. It is your right for a hand search. You get treated better, often faster, and easier if you are a slow poke like me.
  10. Be mentally prepared to spend time in security. You have special needs – get over it. Let them do their job and mellow out.
  11. RA – if it is a bad RA day simply ask for a wheelchair or bring your cane and ask for help. No reason to miss your flight because you are limping so badly like me
  12. Commit to the Cart – Once I started walking and got bored of waiting for the cart. HUGE mistake – they refused to pick me up later and said “you can walk” even though I was limping like a dead horse… don’t refuse the cart wait if you need it – you can only guarantee it at the gate and entrance at certain airports IF you ordered it ahead of time.
  13. SKYCAP/ $20 = joy. Forget the painful wait and agony. Just pull out the 20 and get over your complaining. Your pain will be so happy you did.
  14. Long flights are an entirely different story. You MUST walk around the plane many times so that your legs and feet are not giant balloons. This takes effort and an aisle seat
  15. Say “No” to IV towersI know there are more but I am still exhausted from my trip so I’m going to go back to work.
  16. love,
  17. Sasha xoxoxox