READER COMMENTS June09

1 06 2009

Thanks to the readers of this site – I share your journey with you.  Many of you stumble on the site looking for answers to questions like how to get through another day under enormous pain from either Lupus, RA, or CP.  You can search the site for terms or keywords I use in any blog post simply by entering that word in the search bar on the midway-upper right.  Some of you want to know my own journey living with so many autoimmune diseases and I’m sure you’re hoping to find some key to unlock the mystery of how to get rid of the pain.  Some of you might be looking for solutions to get on SSI or other financial aid.  Hopefully you’ll find that this site offers some hope to you or your loved one.  I’m currently in the management phase of my pain control.  That alone is a miracle.  I finally have my pancreatitis at a liveable level thanks to my intrathecal pump.  I don’t mind having a big hunk of metal in my body – how could I mind something that has taken away that deathly pain?  I’m also lucky that I have world-class doctors here in Los Angeles.  I think i’d still be in all kinds of pain if I didn’t live in a major medical city.  If I didn’t live here then I think i would’ve found a way to travel here to at least get a great doctor several times a year.  Doctors outside of LA, NYC, and Houston tend to default to the response “you must be crazy” before bothering to find a reason.  

I;m in the midst of making peace with the fact that I will never be able to have a chid from my own body.  I’m 36 now and dread that reality – but it would simply be far too dangerous.  It’s so sad though… I never thought the option would be out of the question, but now it really is.  Even if a high risk obgyn said i could do it – I now know that Dr’s these days still dont see the whole body – – they just see their individual parts.  ..And that makes it even more dangerous.  

Many of our readers are curious about prednisone.  I’ve written a lot on this topic so definitely do a search to find al the posts on that topic.  One reader was curious if gifts work for doctor’s offices- YES  – absolutely.  I often give gifts at holiday times to the ones I see the most – but remember to give something fun and healthy because everyone gives sweets and it’s a real drag for them to get more.  

One reader wrote in about being so angst with pain that they felt suicidal.  If you read back over the past 6 months of my blog you’ll definitely read up on my experience with being severely depressed.  Just remember that life always changes – even if it seems impossible to you right now.  When i hit rock bottom recently I couldn’t fathom anything was going to change – but literally only one month later I’ve made new friends, started going to a new recovery group for people with depression & anxiety, and now I even have my datebook as filled up as I want it to be!  I never thought I’d get out of that depression and am amazed at how quickly everything changed.  

(READ ON FOR MORE READER QUESTIONS ANSWERED on RA & CP)

One reader wanted to see photos of Rheumatoid Arthritis.  I tried taking photos of my massive joint swelling, but they didn’t turn out well.  One of the key symptoms of RA is massive joint pain on both sides of your body at once.  My brother has gout which hits one joint at a time.  It’s all in the family, but quite a it different.  For both of us our joints get red and swollen.  My hands, wrists, and fingers are the worst most of the time.  

 

One wonderful reader wanted to know how to show affection to their sick girlfriend.  This one is simple because boy have I been there!!!!  It’s really easy – kisses on the body work well.  Running a hot bath is amazing.  Laying in bed and telling each other fantasies is good.  But one thing I always wished Jax could do was to touch my scars.  I used to wish he would run his finger over them.  To me it would have meant his acceptance of my disease.  It would have meant he knew how i felt.  Now Jax and I are broken up, but I’m positive he knows how I felt and how I feel.  I love him and would do anything to have us back together.

Another reader wanted to know what a pancreatic attack felt like.  I can only speak for myself on this front.  First, it is usually related to eating time – meaning it hits about 20 minutes or less after I ate.  It starts as a sharp stabbing pain just below my rib cage at my solar plexus.  The pain quickly pierces a hole into my back.  It feels like a soldier ran at me full force with a bayonet.  The stabbing feeling is sharp and never ending.  Sometimes i feel like throwing up, but only some of the time.  I usually want to roll in a ball and cry at this point.  It is nothing like female cramps.  Those are much further down.  Also, it creeps down the sides of my ribs, but not in the area of my kidneys.  It usually stays this way until i find a way to get the pain under control. 

The area of my life I’m working on now (as soon as I get over this damn flu/cold) is rebuilding my support system.  I lost so many friends over the past 6 years.  i don’t blame them.  I could not go out for fun until more recently.  My first goal is to build up  group of girlfriends then I’ll move on to making things better with people I’ve known for awhile.  I’m so exhausted much of the time so I have to be realy careful how I spend my energy.  It’s like a fine balance on a tightrope.  It’s so easy for me to over do it.  I’m having to be even more careful with what I eat.  The wrong food can trigger a pancreatic attack- so I’ve been removing as much gluten as possible.  Since I now have diabetes I have to remember that my body is constantly on alert.  It’s exausting to have to be so thorough.  

Luckily i’m finally getting tired before 2am which is a HUGE change in the past 3 weeks.   I read that sleep can cure many things and that the 8 hours I’m forcing myself to spend will do dramatic good to my body.  Sometimes the pain makes it impossible to sleep  –  but I’m finding myself in a much better head space when I sleep like a regular person.  The irony of course is that I should at least sleep as much as a normal person – That said I’m gonna hit the hay and hope I make my deadline tomorrow with flying colors!!! – Love, Sasha  xoxoxo

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