Pain Is Like a Box of Chocolates

P.S. If you have already read the recent post “getting Help for R.A. you might find the new comments for our reader very Heidi interesting.

Pain is Like a box of Chocolates….
Some people have more than one autoimmune disease. I do. I have R.A. and chronic pancreatitis.  When one is bad, so is the other.  They are like twins feeding off of each other.   Sometimes I feel like I’m being crushed under the weight of it all. Today was one of those days. No matter how much medicine I took and regardless of the morphine in my pump I couldn’t move past the pain. I know my bills can’t wait for me to feel better. I know I must move forward. But today I couldn’t move from under the sheer weight of it.

Drifting back to the memories in the hospital of first being diagnosed with idiopathic pancreatitis I was perplexed. How did this disease find me?  Then much later when RA sprung up like a much faster demon I stopped myself from crying. Both diseases equaled pain. Pancreatitis grabs my ribs and ripples pain through them. I’m afraid to breathe deeply.

I know there might be days where the pain makes me so depressed that I don’t understand the point of being alive.  But then I remember that is the pain talking, not me.  I love being alive and doing myself in over pain is the most selfish thing that I could do.  I’ve seen enough in life to know that it’s better to stay on earth in pain than to be gone.  My folks had a friend with a lovely family of 3 kids.  He had severe back pain and after several failed surgeries he killed himself.  I always think of his story when I feel the pain is too much.  He didn’t know himself anymore and didn’t want his kids to remember his pain and complaining – but instead that is what they remember the most about their father.  And I couldn’t bear that memory about myself.

The pain slices through my back and wraps around to my ribs in a second wave of pain. It’s like a vice grip on my ribs. The pain deferred from one spot to another. Perhaps one organ simply cant take that amount of pain. I know that if I ask for it to release me that it would kill me first.

Jax made tacos for us tonight..Taco Tuesday as we like to call it.  And he suddenly crashed asleep on the couch – leaving me to my own mind and myself the rest of the evening. As pain swirled around my head and my universe i could remember moments where the pain fell to 4th place or even 5th and so I know this time it will too.  I just have to remember that every moment is not permanent.  Jax and I haven’t had time to get back in sync fully yet since i’ve gotten home because real life marches on with work and to do lists.  But I know that this weekend we will be sweet on each other and go get ice cream by a bicycle store while we dream up the bikes we are saving up for right now.  i just want an old school Schwinn.

This kid says: “RA-please don’t slow me down!!” I want to ride my Schwinn!!

I just have to remember to keep dreaming and thinking of the next part of our life together and separate while we have smiles, great goals, things beyond our wildest dreams, and more of this pain under control!

For me, Each day here is borrowed – a gift. So I can’t complain about the pain that can take up days of my life. What will I remember about the pain when I’m in heaven?

-Sasha xoxoxo

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

Traveling with Enbrel and a Pump

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

Need Sleep

I have one more week to go of the biggest project of my life. I am freaking out though because it’s costing me an arm and a leg so I am a bit stressed, depressed, and wigging out. The biggest issue is that my credit cards are all at their limit and that is not a good place to be. It’s essential for me to spend my own money on this project until I will get reimbursed in about 8 months. That’s a long time to wait for things to return to normal.

The part that is BAD is that I need to order Enbrel since I ran out on Tuesday, but it costs $75/per month. This is a freaky time for me. I know I’m doing the right thing with this project helping at-risk girls, but I know the stress makes chronic diseases worse. I can certainly feel pain starting to creep into everything I do. If you’re able to help out – please do on the donate page. Ultimately, it’s going to a great cause for at-risk teen girls.

Now that I’ve been out of town for a few weeks I can honestly say how badly I want to be home. I need a rest. I’ve had to take more medicine all around due to the stress. I hate how cymbalta makes my head spin if I forget to take it for a day. The hardest part of RA and pancreatitis is that people can’t see these diseases and so they really don’t seem to give a crap. I wonder if that’s because they simply have no idea how horrible it is.

Also, why is the name “Rheumatoid Arthritis” so lame? It makes it sound like some old lady with sore joints. That isn’t even the start of it. Ever since I’ve been taking Enbrel I’ve begun feeling so much better. Last week I felt like my RA is going into remission… but now that I have gotten off my schedule for taking it I can feel it creeping back into my hands, foot bones, legs, etc. I try to stay strong and determined but it’s tough!
With my chronic pancreatitis I feel the opposite. I don’t know what I’ll die from or when I’ll die – but I do always feel as though it’s highly possible that it might take me down. It’s just not fair to my Jax to have to be with a girl like me – so many issues. Honestly, I don’t know why or how he puts up with me. Well, I’m sure glad he does!! but I miss him so much right now. It’s already been weeks. Every time i start an argument with Jax I bring up this subject. It drives him nuts. I suppose i understand why it makes him crazy, but I truly am mystified by it.

I remember a few years ago when things were all at their worst.  That’s when the Dr.’s wanted to give me a feeding tube  because my pancreatitis was so terrible.  Thank god i started seeing a pain management specialist right then.  Also, the therapist at the time told the doctor that I would probably kill myself if I had gotten a feeding tube.  I mean, in that situation your relationship has no hope of being remotely normal.

I’d think Jax would get so sick of this cycle I seem to be in – THAT is I work so hard out of town for a month or so THEN I need to be in bed for five or six months. That’s insane. But I hope I have changed enough things in my life this time that he won’t freak on me and try to break up. I would be devastated. I’m so exhausted I keep deleting my own text so better go to oeeewoooooooooooooooooooooooooooooooooooooooooooooo3333333333333333333333333333333333333333333333333333333333333333333333333333333333333333333eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee e (fell alseep).

love Sasha xoxox