How's life Out Of Her Shell?

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Lauren Ide

outofhershell@yahoo.com

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Sat, 30 Nov 2013 05:08:19

Pride 2013

I did my best. I had to work an extra day last week so I could have Sunday off for the parade leaving me with one day, Friday, to rest up, clean, do laundry, and prep for the weekend.

I'm grateful I was able to go out and I DID have a good time. But today I'm feeling sad about all the possible social
connections I completely missed. I was using up all my spoons just to be there, to ride, and to stay on my feet. Sadly that doesn't leave much for simple activities like making small talk, getting to know folks in a social environment, volunteering, or chatting across a lunch table. 

If I'd stayed home I probably would have ended up feeling more balanced but also like I was missing out completely. By going I was able to be there, but in a way it showed me how much more I WAS missing out on. This was probably the most epic Pride celebration in SF ever. It was amazing.....just from what I saw, and I didn't even see all that much. 

I also had a yucky flare up of hives on Saturday and Sunday, mostly on the areas that were exposed to the sun. 

I'll probably be calling the allergist tomorrow morning for an appointment. It's a LOT of money but I think I need to try. $250 just for a consult.  Plus testing, bloodwork, possible meds, etc. 

UPDATE: Appointment made with the immunologist for next week. Because of the high doses of antihistamines I won't be able to have any skin testing done, but as I understand it serological allergy testing can be. We'll see. So as of now it's a consultation only, but I was told that it would last about an hour. Hopefully that's enough time to take a through history and to maybe figure out what's going on. My vote now is auto-immune urticaria. http://chronichives.com/what-is-chronic-urticaria/autoimmune-urticaria/   And because I've already gone through multiple treatments with prednisone, it seem like I'm probably a candidate for immunomodulators/immunosuppressant drugs. Who knows how much THOSE drugs cost.....

bah. wishing I had health insurance.......
won't change it, still costs lots of money for health care. ergh.

I'm hopeful for some resolution. Please? Soon? 

Rock and a Hard Place

I couldn't resist this adorable picture of a turtle who got herself stuck between the proverbial rock and a hard place. I'm feeling her confusion and frustration right now. The only thing I know how to do is to keep moving forward one day at a time. So I'm gonna go with that as it's worked before, but in the meantime I need to sort out some feelings.

I crashed today. I reached a point where I could no longer sit up and had to lie down, and the same end-point with keeping my eyes open and keeping awake. Star Trek kept playing and somehow I knew that, but I didn't have the though or desire, let alone the ability to turn it off. And it's not like I had to get up off the couch, it was one small arm movement that I couldn't even manage. I woke myself up from snoring but also couldn't seem to turn over. I had an early day at work today so I'd guess that I wouldn't be up to much tonight, so didn't plan anything, but as usual it seems much more of a wash than I'd planned for. 

I was hoping to do some manifestation work, something positive to direct my thoughts and energies for the future, an organized way of saying "This Is What I Want", and instead I find my mind spiraling with worry. In my monkey-mind's defense I'm worried about BIG STUFF....but it's not stuff I can do anything about right now. And so I've determined that the worry is rather silly. But I still feel it. And I'm concerned. 

There's two major areas that are related, of course, because everything is. 

One is my ongoing health challenges as it relates to my activities and my ability to do them, managing my multiple conditions, somehow finding the energy to continue working, and what's coming to look like an eventual need to apply for disability. I keep saying I'm not there yet but I think that things are happening so slowly that I might not realize that I AM there until after the fact. I don't know. How does one make a decision like this. 

The second is school. How to work enough to pay the bills while I'm doing it, the classwork itself (pretty low on the worry list, actually) , paying for it now that I'm almost at the financial aid cap, and worry over the exertion of school AND work and how it's going to negatively affect my health. Also, there's the fact that I *need* to finish because I know I can't do the job I've been doing much longer...but it's taking so damn long I might be on disability before I can finish....especially if I'm out of money. 

WTF, man. I'm trying to make my life better. I'm trying to stay OFF disability and find myself work I can do....but if I can't pay for retraining then how am I supposed to do it? Can I catch a break, please? 

I'll tackle the school/financial aid issue first because it's shorter and easier to explain. I fucked around. I dropped out when I was young and didn't finish my degree. That's my fault and I get that. Then I went to massage therapy school and all of those loans went onto the total. At the time I never thought I'd want to finish "real college" again so it didn't seem to matter. Massage has given me enough income to live on, but never enough to pay anything back, so I never caught up on any loan payments. (include high medical expenses in there) So when I DID decide to go back to finish my degree, it had been so long few credits counted and I basically needed to start over. (my associates degree in massage doesn't count toward anything, it's a trade and not transferable.) I chose nursing. A reliable field where I could find work and something for which I believed I had aptitude and skill. Six months back at full time school with part time work (I've always worked) I got very sick, again. The worst symptoms I'd ever had before. I was diagnosed with "chronic fatigue syndrome" which is also known as ME (Myalgic Encephalomyelitis) A year later, still struggling with disabling symptoms, I finished my nursing pre-reqs and applied to nursing programs. I got in because of my excellent grades but I declined the admission because of my poor health. If I was having trouble simply making it through an average day, then what business did I have training for a program that expected physical labor and 12 hour shifts? If my brain was foggy, I probably didn't belong in a job where someone's life was in my hands, no matter my good skills and intentions. I had to change my major, again. 

I took a leap and decided on the most logical course based on past credits, more current credits, and personal interest. I went back to biological anthropology and began to set my sights on graduate school. 

Now the money issue. Simply, because of my varied past I am now very close to the financial aid cap for undergraduates. The cut-off is 57,500. I could have sworn that when I checked it two years ago it was 67, 500, but perhaps I don't recall correctly. I can't seem to get an answer anywhere on whether the cap is based on the original total disbursed loan amounts or on the total owed which now includes the capitalized interest. Likely it's the total amount due, which is over 51,000 already. 

So let's say I have 6500 left available to me in loans. One year of tuition is over 7. I have at least two years to go. That's the basics. There is still the need to work to try to cover living expenses, and I won't be able to work as much while I'm in school. If I can't pay tuition I'll have to drop down to part time or take one class at a time while I work at job that is so physically challenging that it's making my health worse. I'm trying to finish school so I can get OUT of my current job like I needed to four years ago. With upper division classes that are offered only once every two years, completing my degree will be very drawn out if I cannot attend full time. 

Yes there are scholarships, but I'm white and have no children so my options are limited. I don't have the extra energy to do civic work, extra projects or essays that are required for many applications. I've already applied for what I can for the year through my school. 

Yes there are private loans. I'm not eligible. I don't have any credit cards and very little in savings (and that usually ends up going to medical expenses or school expenses) My credit is quite poor due only in small part to actions that are my fault. I am a survivor of a long-term abusive relationship and my ex controlled the money. Years later I am still suffering financially because of what he did to me. I can't even get a car loan on my own and that's considered the easiest to get because if you don't make the payments they just take the car away from you. 

Yes, there are grants. Because I've had to work instead of showing low taxable income because of classes, I'm not currently eligible for a Pell Grant. There are CalGrants, and I may receive a small amount that could help, around $1000, but I can seem to get a clear answer on my eligibility. Even though I'm a CA resident, most if the entitlement funds go to students who graduated from a CA high school or did their lower division in CA. Most of my lower division credits are from Arizona or New York. I had to leave AZ and finish my degree here in CA because I needed to get away from my abusive ex. 

So that's the (much longer than I'd planned) summary. I don't think I can make myself write about my health and illness or potential disability right now. I don't have it in me. It's too hard. It will have to wait for another post. 

I do feel somewhat successful though, as making my mind think coherently enough to make sentences out of words has calmed down my emotions. I'll take the small victory, thank you.

Experiencing the Steroid Taper, an Exercise in Gratitude.

The prednisone is going away. The wonderful and amazing relief is slowly decreasing with the tapering dose.

Gods, I could walk to my bike after work without dragging my feet. I could get through work without having to force it. Sure my hands still shook and the the muscle weakness was there, but I could do my job!

And now it's going away a little at a time. Again. For someone who has lost so much health,  a week and a half of relief has been a GodSend...but I knew it wouldn't last. I miss feeling good already. Dang, I was dreaming of a normal life again. I researched a yoga class, I was imagining dancing again. (yea, that hurts) all the pretty costumes, the sequins, the colorful scarves. I guess it proves that I am really sick and that I'm NOT lazy...when ONE WEEK of feeling good puts my thoughts right on track again with activity and exercise. (Even though I made myself stay within my regular limits knowing that even though I felt good it would easily throw me into a ME/CFS flare if I wasn't careful. Just because symptoms were alleviated, that doesn't mean I can avoid PEM.)

The prednisone dose this time around started at 60 for 4 days, 40 for 4 days, and today was my first day on 20, also for four days, then 10 for four days. Today on 20mg the hives started to come back. Granted they showed up at the end of my work shift at the end of my work week, and they were on my hands...where the most heat and pressure are. We'll see how they appear in the morning.

The hope with the prednisone treatment was to not only alleviate my symptoms after so many months, but to hopefully suppress my immune system enough that it stopped overreacting. This is behaving like an auto-immune disease, and apparently at *least* 40-50% of chronic urticaria (lasting more then 6 weeks each flare-up) are auto-immune in origin with the body reacting to a high affinity IgE receptor (https://en.wikipedia.org/wiki/FcεRI) that modulates allergic responses like histamine. Apparently there are specific auto-antibodies, but they are very difficult to locate and specialized tests are rare. (including one where the serum is separated and injected back into the patient to test for response)

And it does appear already that the the hives are going to flare up again even though I've been diligent about maintaining H1 and H2 treatment during the prednisone course. (antihistamine) which means my immune system hasn't been conquered. Continued treatment TBD. Sigh.

It has been a blessing to feel sort of "normal" again after all this time, even if it was for so short a time. Even though I'm a bit irritable and having a few mild symptoms of tapering the dose I'm grateful for the experience. Thank you.

The wonderful and horrible prednisone

This first photo was taken during my IMsL step-down on May 3rd, 2008. I was on high dose prednisone at the time and it really shows in my face. I was having a rough time but doing my best. SO bloated. 

This was taken the next day, May 4th, 2008. I don't think this photo even looks like me because of the moon-face. Also pictured is my brother, Kris. 

This was taken January 2010 when I was already over a month into the worst flare up I've ever had but hadn't yet started prednisone that time around. 

This photo was taken on Thanksgiving 2009 in Phoenix, AZ. It was after my first semester back to college as an adult and after nearly four months of regular diet and 3x weekly work outs. 


Sometimes I like to fantasize about what I'd look like or what my life would be like if I wasn't sick. I don't really do it out of sadness or longing for what I don't have, that isn't particularly productive. But I do like to remind myself that at one time I was able to exercise 3x a week, bellydance 1-2x a week, handle full-time classes, part-time work, a diet, AND achieve a 4.0 GPA.  When I'm feeling fat and bloated, like I am today from the current dose of prednisone, I need to remember that *I* am NOT my illness.  *I* am NOT my body. *I* have the desire, the drive to do better, to be better, to learn and to grow, and to improve upon myself....even if this physical body isn't quite keeping up. Sometimes I know people look at my weight and judge me. And I say, F*ck Off. I'd like to see you do half as well as I have with my health challenges.
I can only do my best. 

Medical Update

It's been a few weeks since I updated any medical information online so I thought I'd put some thoughts together.

I saw a new Doc at One Medical in SF and had a great experience. He listened to me and I feel like we're on the same page more or less. 

He did a physical exam, ordered blood work, and prescribed a tricyclic anti-depressant that is also an antihistamine for me to try for the hives. 

The blood work was all negative. I was screened for Lupus, Rheumatoid Arthritis, and other auto-immune disorders. Weirdly, I was wishing for a positive result. I was wishing I could be diagnosed with something that could be validated by tests, something that people recognize, something that isn't so easily dismissed. So it does seem more and more like I really do have ME/CFS. Not really surprised. Once I have insurance I'm going to see about a brain MRI to check for lesions. 

So the anti-depressant/anti-histamine was a bomb. I did what the Doc asked and made it a whopping two weeks before asking to be off of it. I didn't feel like myself, emotions were numb, lack of concentration, staring off into space, arrhythmia, and other physiological side effects all combined to make it a poor experience. But it's all ok. I had to try it. 

So today I saw my Doc again. I agreed to try prednisone again. I have mixed feelings, but it simply can't be as bad as an anti-depressant. What he's prescribed is a 16 day course starting with a high dose and decreasing every four days. It's designed to not only decrease my symptoms but to suppress my immune response enough so it stops overreacting to everything. I'm hoping the short course of treatment means I won't have too much trouble with side effects. (Which are a nightmare, and get worse with every treatment of prednisone) So I'll start the prednisone treatment tomorrow and we'll see how it goes. 

I've also agreed to see an allergist/immunologist once I have insurance. I've described the NEAT allergy treatment I've received from my Doc in AZ, an NMD, and even though my MD wasn't familiar with it he didn't dismiss it out of hand. He still wants me to consult with an immunologist to see about possible other conditions that could be presenting as urticaria. We both agreed that a dermatologist isn't going to help. He did ask a lot of questions about my activity levels, work hours, etc. I just said, yea, it's really hard most days. It's really hard to keep it up, to keep going. Last time I did say that I feel like I'm borderline for disability and he nodded. 

We agreed that first the symptoms needs
to be addressed, then the cause of the recent flare-up, then chronic care. I like him, my new Doc. It feels like we're building a good relationship. I even joked that if we don't figure out the hives this time around its bound to happen again so we'll have another chance. ;-) 

So that's the update, I guess. 

I'm cautiously optimistic and always hopeful of some resolution. If I don't believe it exists then I certainly won't find it. Thanks for following along at home. ;-) 

Not So Invisible Disability

I had a poor experience today at a free clinic. Although the 2nd year med students who volunteer and run the clinic were mostly fabulous, the doctor was much less so. 

In about 5 minutes he managed to:

not listen to me and barely listen to the student who was 'presenting' my case after taking a thorough and compassionate history, question my diagnosis of Celiac Disease (made in 1996), accuse me of "cheating" on my gluten-free diet, not greet me nor introduce himself, barely looked me in the eye, ask to see my OTC inhaler so he could see what it was then scold me for not using it properly. He didn't hear my primary reason for being there today, never once was my diagnosis of ME/CFS even mentioned by the student (apparently he thought it wasn't relevant, even though we were discussing my immune system. And that's assuming he even knows what ME/CFS *is*), he questioned my weight (which again, is a struggle because I can't really exercise within my energy envelope and heart rate restrictions) , questioned my diet, and then he told me I was having very bad allergies (even though I'd just said that my allergies had been recently treated and that seeing an allergist wouldn't help me) referred me to an allergist and said he believed there was some underlying immune system problem, then walked out of the room without any closure. 

I was able to chat for a couple minutes with the student who had taken my history and presented my case after I saw the doc. (who didn't have anyone else waiting and had no reason to run out of the room like that except that perhaps he was uncomfortable with my case) The student kindly took my contact information in case some referral opportunity came up. They had no sources of cash pay specialists....odd for a free clinic, yes? I'm not sure. The student explained that he was probably reluctant to prescribe a rescue inhaler because treating the asthma could cover up an underlying condition. Ok sure, I suppose I get that. 

Really? You just saw someone with obvious allergy/anaphylaxis issues who says that they have trouble breathing and that some symptoms include swelling of the esophagus. Some practitioners would have a big issue with him letting me walk out of there without an EpiPen, let alone a simple rescue inhaler. 

The student seem apologetic and was sorry nothing else had happened for me. I started out the interaction by stating that I didn't expect a free clinic to figure out all my issues and that I was there for the asthma and for an inhaler. I guess I set my minimum a little too high. :-/

The other issue I had, in retrospect because it all happened so fast, was that all the work over the past six years I've done with my primary physician in AZ, a Naturopath, an NMD, was dismissed.  She went to four years of medical school like any MD, and she even did a residency and advanced training after medical school. The student I worked with didn't even know the difference between a Naturopath and a homeopath. This lack of knowledge and understanding certainly contributed to my symptoms and my diagnosis of ME/CFS being dismissed and ignored. 

By the time I got to my bike I was weeping tears of frustration, anger, and disappointment. I was crying so hard it would have been unsafe for me to ride just then. It probably took about 20 minutes for me to calm down. And all afternoon whenever I thought about this again I would just break down. I think I'm finally calm enough now since I was able to write the above story without a tear. But now my symptoms are so high I wasn't able to go out like I'd hoped for and felt up to earlier. Yes, stress contributes. But it's obviously not the cause. 

I have an appointment next week Wednesday with a doc at One Medical in San Francisco, a medical group of general practitioners (who seem aware of integrative medicine) who will see patients on a cash basis. I'll pay a total of $300 just to see a Doc, so he better be good. 

In the meantime I though I'd share a few photos I've taken of my most distressing symptom, the hives. Sadly I missed taking a photo of the day when my ankles were so swollen that the pressure on the blood vessels cause them to break and I had purple splotchy bruises for a few days. I also missed photos of the extremity swelling at its worst, but I have a couple of hives with moderate swelling. 

Right ankle showing hives, swelling, and painful evidence of a day at work. See the other ankle picture below to compare the swelling. This was taken early on, within the first month of symptoms. 

Both ankles showing purply splotchy hives on the right.

Early on the hives bled together like this covering 40-50%, at least, of the surface area of my skin. I was hot to the touch. 

Most days, with the high doses of palliative meds they usually look like this. 

With palliative meds

Taken on the worst symptom day I had to date.  

Taken on the same "worst day" the only day I've called in to work. I was so sick I could barely roll over to take the picture so I just lifted my shirt and did my best. 

Relatively unswollen ankle for comparison to above

Taken today

Taken today

I don't know why the pictures are all out of alignment and I don't have the spoons to figure it out now. So I'm posting and that's that.

A nap as a spiritual calling?

Maybe blogging late at night isn't the best time for me to be doing it. I always seem to be overtired and maybe a little more emotional. I don't know.  Maybe that makes it the perfect time.

Today I made a powerful choice for self care, and I feel proud of that choice. Powerful yes, but made quietly. I followed the direction inside, step by step, my intuition, my angels, my spirit guides, or maybe simply my better sense. I don't know. I walked away from a situation that I thought I could handle. Indeed, I rested some of Thursday and most of Friday so I'd feel well enough to go on Saturday. But when I got there I realized that while I had enough energy to take care of myself, I had nothing left to care for anyone else. And since looking out for and caring for others was *exactly* my job today, I obviously couldn't do it.

I miss out on a lot of social events. I don't go on dates, at least not lately. I can't seem to find the energy nor the opportunity for any classes of the extracurricular sort, and I know I'm missing out on a lot of enrichment in life. Most often I have a peace with this because I know I'm better off resting or staying in.

But today was hard, even though the choice was easy. It was hard because I walked away from an activity that feels like my calling. Usually in that situation I feel like I'm exactly where I'm supposed to be, more than any other situation ever, I feel a _rightness_ about it that I can't explain. I feel that no matter what I AM doing what I'm supposed to be doing. And yet today I couldn't quite get there. I couldn't quite stop thinking about my bed, about resting, about a nap. Since when is a freaking *nap* more important than a spiritual calling? Since today, apparently.

(Other thoughts about community involvement/volunteer work as well as how hard I worked to get where I am. Maybe another post about realizations regarding what I will probably never be or do, especially in light of IMsL this coming weekend.)

Out Of My Mind

I felt like an addict today when I was sitting on the edge of my bed, head hanging, a bottle of pills in my hand. I even poured them out and counted how long they would last. I picked one up and rolled it around my fingertips imagining what it would feel like to swallow it, the metallic taste in the back of my mouth, my heart racing as it kicked in. But I didn't take any. I slid them all back into the bottle and left them on my nightstand while I went to work.

I mean no disrespect to those who have dealt with or continue to deal with addiction. I respect you for your struggle and your recovery. I went to Al-Anon. But aside from cigarettes, (non-smoker for over nine years) I don't have any personal experience being addicted to a substance.

What I do have is what I am perceiving to be nearly unbearable circumstances. Notice how I worded that sentence. I don't mean they *are* unbearable, only that I perceive them to be. I'm looking for a way out. I need it to stop. I'm going nuts. Bonkers. Batty. Loosing my marbles and hanging chandeliers with not enough bulbs. Whatever.

At two weeks I was in tears of defeat. At three I'd asked for help from my doc and started to help myself. It's been nearly eight weeks of horrible, painful, inflammation and swelling, matched with other weird symptoms and now terrible ME/CFS flare up too.  And it's been five fucking weeks that I've been surviving on fruit smoothies, raw food snacks, and green tea. Two months of nightmarish inflammation and I'm so done. I give up. This is too much.

I can't go out, I can't eat normal food, I'm having trouble breathing because of bronchial inflammation, coughing, headache, hives, swelling, skin bruising, heat, fever, sore throat, swollen glands, swollen esophagus, joint pain and swelling, strange bleeding, poor sleep, rhythmic muscle spasm, high doses of palliative meds that are probably hurting my liver and kidneys, and oh yes...I'm fucking tired. Tired of walking, tired of working, tired of pushing myself through activities that are hurting me. I'm fucking tired.

I want to cry but my throat is so sore it will hurt, and my eyes already feel like they're burning. I try to watch funny viral videos to raise my mood but when I laugh it hurts to cough. My muscles are sore, I feel raw in more than a few ways.

All I seem to be able to do is bear it. And often I seem to be able to do it with a smile, a good mood, and even positive, uplifting attitudes.

But not today. Fuck it. I want the drug.

I want the nasty steroid that will suppress my immune system and completely deregulate an already deregulated system. I want the drug that will make me put on more weight, swell up like a puffy balloon so none of my clothes fit, retain fluid in my legs and ankles so painful that it hurts to work on my feet all day, let alone walk to the train. I want the drug that will displace adipose (fat) tissue and make it show up in weird other places. I want the drug that causes tachicardia so high I have trouble standing up until I adjust to it. I want the drug that causes even more symptoms when weaning off of it.

I want out of my body. Or I want it to feel like I place I want to be. I need a fucking break. Fuck.

It never goes as planned....

......and I'm ok with that. By "ok" I mean I don't feel much suffering at all around the issue. Sure, I like to plan. I've got some mad organizational skills that need regular exercise but I also know that it almost never works out how I thought it would. Isn't that grand?? Universe can plan some pretty amazing stuff for me and if I held on more tightly to what I think I want right now then I wouldn't get to see or feel the new stuff, the amazing stuff, the unexpected stuff.

I always seem to think I know what I'm going to write about before I do. After my last post I thought it was going to be very important to write all about my diet and my smoothies, but no, today I find it simply doesn't matter.

I seem to still have some expectation around how often I'm going to blog here but that doesn't work either. Sometimes I need to express, sometimes I need to be Seen, sometimes I'm lonely.

I'm quite grateful that I'm such a natural introvert. Since getting sicker I've spent a lot of time alone at home with only my cat, Switch, and my Interwebz for company. Here he is doing a great job of it. :-)

But I do get lonely. I love to hear about events happening, even if I can't go. I like to be invited even though I know as soon as I read the invitation that I'm going to decline. If you do see me out then it's a good day, or else I really really really needed some socializing.

IMsL is coming up in two weeks and I'm already feeling a little anxious about it. So many people going every direction and a lot of them I want to see because I might see them once a year at best. It will be busy and active....and I'm already thinking about how to plan my outfits to cover up the hives. If it's even possible. Going shopping tomorrow to see if I can find something new, pretty, girly, and possibly inexpensive to wear for the event. And definitely stopping at Target for some tights. The hives still seem to like to be on my legs, especially if I don't have time to rest. A lot of my regular outfits show skin, especially the upper chest, shoulders, and neck, and that's right where a lot of hives like to be. I haven't figured this one out yet. Sheer long sleeve top under the corset?

They were pretty bad yesterday and this morning too, but the most active thing I did today was walk out to the kitchen so they are much better. Switch has stayed by me the whole day. Such a trooper. Cause it's pretty hard on a cat who had a mom who's in bed all day, donchaknow. ;-)

What?!? Sick, again?

Yes. Sick again. In spite of all my efforts to take care of myself, the constant attention to activity and exertion levels, the vigilance,  I still ended up in a flare-up. In retrospect, I hadn't been eating very well. I was going out a lot to eat because it was convenient, drinking more often than I had in a long time. Eating sugar. Maybe not even resting as much as I *could*, although I believe I was resting as much as I needed. I hadn't had flare ups of CFS symptoms, except for short term crashes that I recover from in a few days in nearly two years. And I didn't get the symptoms, the horrible, challenging symptoms I got this time in about three years. I thought I was home free, but now I'm thinking again.

The hives are back. DUM, dum, DUUUUMMM!

heh.

So I was ill after my trip to Sedona. I believed that I'd somehow accidentally ingested gluten and that I was having a reaction. Then about two weeks later, eating relatively normally but not going out as much since I'd just spent money on the trip, I had some Thai food. By a few hours later I could feel the hives starting to break out. They were bad enough that I was alarmed, remembering the three horrible hive attacks I'd had over about a two year period. They got a little better a few days later, and then blossomed again. They kept getting worse and worse. By three weeks I'd had enough. I was freaking out, scared, panicked, and feeling defeated.

I called my NMD in Arizona who's been my doc for six years. She agreed with my theory of leaky gut syndrome post gluten attack and that it was probably causing my immune system to over react. She prescribed a regimen to heal the leaky gut and to hopefully reduce the symptoms. In the past I went on prednisone to control the symptoms, and high doses too, but I still have after effects from the side effects of the last round of prednisone. Edema, adipose relocation, adrenal fatigue, and about 40 pounds that won't budge. I chose to try and weather this inflammatory experience without immune suppression.

Here is a picture of how they looked when they were pretty bad, but not necessarily at their worst. About 40% of the surface area of my entire body was covered in flowery hives just like this.

The red outlines indicate the outer limits of the hives and only look like this after antihistamines to reduce the swelling and hydrocortisone cream to help the itch that made me bonkers.

Every morning I'd wake up and spend about 20 minutes scratching which seemed to burn out the little mast cells and keep them from pumping out more histamine.

They got worse with work and other activities as well as with certain foods. So I put myself on the safest diet I could, and for three weeks now I've been on an anti-inflammatory fruit and greens smoothie diet. There are a few add in I'm beginning to integrate one item at a time so I can determine if I'm reacting to it. I've found a couple things my system doesn't like in the process, but for the most part the diet, along with the treatment from my doc, has helped a LOT. How else would I make it through three weeks on a damn smoothie diet?!?

So this second pic is what they look like more now after a day of work. Smaller, more red, and bumpy. I start the morning with them on my torso and then the morning ones fade away. By afternoon they are starting to come up again and they appear more on my forearms, hands, lower legs, and feet. before they'd last about three days, now 1/2 to one day. And they're not as itchy. Last week after a couple days rest I was nearly hive free. Then one day back at work and I'm all worked up again.

At one point recently there was so much swelling around my ankles because of the hives that not only was standing and walking painful, my skin was covered in bright purple splotchy marks from broken blood vessels. It took them days to fade away. :-/ I didn't get a picture. I think I wanted to forget.

BTW, it's been nearly six weeks that I've had hives. Every day. At least they're not so much on my face anymore. When they're on my lips and eyelids is the worst....second only to a sensation of swelling in the throat. That pretty much sucks.

Obviously I'm having terrible inflammation and keeping it down is key. I haven't been very far from my blender in three weeks and I haven't figured out travel quite yet. I'm going to be pretty restricted in my diet for some time and I'll need to make it work somehow.

There's another symptom which I'm not really comfortable putting out there quite yet, but I'm beginning to suspect colitis, or inflammation of the colon/gut.

I'm tired for now. I do intend to make another post more specifically about my anti inflammatory diet but that'll have to wait. Maybe tomorrow.

Has it been a long time...again?!?!

I'm looking back and my last post was in January, and that even though I decided I'd post more often, that I wanted to get back to it again, I haven't. But there's been a lot going on, and not going on, that has kept me busy. Especially the last six weeks or so. 

At the end of January I took a trip to Arizona (where I used to live) with my current partner, Vick. We spent four days in Phoenix attending Southwest Leather Conference southwestleather.org After that we took about a week and visited Sedona as well as Jerome, AZ and the Grand Canyon. Here's just a couple of pics from that trip.  

Vick and I after the contest at SWLC Phoenix, AZ

Caduceus Wine Cellar

Jerome, AZ

Amitabha Stupa, Sedona, AZ

Sedona, AZ

The official Grand Canyon Shot

The largest crystal skull I've ever seen!!!

Bell Rock Sedona, AZ One of my favorite places in the world

So during the time in Sedona....wow, just remembering the trip I could make several blog posts about it. About SWLC and the Dance of Souls too. It was amazing. I really stepped into my own. I grew. I handled responsibilities like I'd been trained to do it. And I have been, for years. And that was my chance to show it. :-)

Anyway, during Sedona I got sick. And by sick I mean a little CFS flare up, but lousy gut symptoms that I've usually associated with Celiac Disease. For days I had trouble. I can back from my trip exhausted and sad, even though it was a good time. 

I think I had to fill that in as a part of the past in order to bring things current. I got sick...and I'm still trying to get better more than two months later. Next post.

Stigma

The link below is a short article written for Psychology Today by "How to be Sick" author Toni Bernhard, J.D.

I love how personal and yet succinct this article is. Each time she reposts it I always go back and read it and it's always relevant.

http://www.psychologytoday.com/blog/turning-straw-gold/201104/the-stigma-chronic-fatigue-syndrome

 I've faced this myself, many times. Not so often with doctors because as someone without health insurance I don't actually get to go see doctors or to try new treatments. (I'm not going to go any farther with that because I am only frustrated and angry about it) But every time I try to explain to friends that I'm sick...or if a professor asks if there are any health problems that may interfere with my ability to do the work in class, yea, it comes up.

Sadly, I often recognize some inner shaming going on. It's almost like the disbelief and skepticism I see in another's eyes makes me question myself. I wonder if I'm really sick. (I'm blessed with some ability to have "normalcy" in that I work a job and go to school. It's not easy, of course, and the time when I'm not at work or not at school I'm in bed.) But sometimes I wonder, maybe I DO simply need more exercise, and what if I take an energy drink, yea....that will get me through a work out. And once I get through a few workouts then it will all be easier for me.

Right.

Then I remember that the last time I tried to work out I ended up in the worst relapse I've ever had and I still haven't recovered from it. (up until then it seems I was in a relapsing/remitting phase for approximately 12-15 years. Yea, I've been sick a long time) When I have activity outside of my envelope I get worse. My muscles don't work like everyone else's and pushing them only means I'll be in more pain and won't be able to continue with ADLs until I recover.

During social situations there is often the time where someone says, "We haven't seen you for a while, how come you don't get out more?" An honest question probably coming from a compassionate place....but for me it's a challenging one. I can't simply say, "I've been sick." because then they'll ask if I'm better now. And maybe this isn't someone that I want to share my whole health history with, maybe I'm feeling private that day, and so I take the cop out answer and dismissively say, "Oh, I've been really busy. You know how it is." Often that's the end of the conversations and I've escaped once again. If the person asking is someone I like, someone who maybe I think I'd like to spend time with sometime, I try the answer, "I have some challenges with chronic illness and sometimes it limits my activities." This feels more authentic to me, but I watch their reaction. Most don't know what to make of that so they withdraw and I shrug it off. But occasionally someone asks what the problem is. And then what the hell do I say. Casual conversation isn't really the place for a discussion like that. It's not really appropriate for me to "come out" about being sick. I can't describe the multi-symptom, complex, decades long illness in two sentences and feel authentic inside. I'll try saying I have M.E. but no one knows what that is and it only leads to more questions. But every time, no matter the situation, I find myself trying to avoid using the term "Chronic Fatigue Syndrome." Am I adding to the stigma? I don't know.

Finally!!!!

I've been conditionally accepted to Cal State East Bay in Hayward for the fall 2013 quarter. I'm pretty excited. Sure, it's only a "conditional" acceptance, but that's only because they want to make sure that my transcripts actually say what I told then they would say in my application. And they do, so I'm not worried.

I'm already reviewing the two year department class schedule in an attempt to plan what classes I'll be able to take. There's three upper division outside-of-the-department classes I have to take to fulfill GE requirements, plus I need to take three semesters of a foreign language, probably Spanish. I feel a lot more confident about the foreign language requirement, and frankly, if I wasn't planning on grad school I wouldn't need it nor want it, but I need it and that's the end of it. Since I last tried to learn a foreign language, I've learned how to study, I've learned anatomy, physiology, and microbiology, I've learned chemistry, and I've had a lot more mathematics. Those are all languages, really, and Spanish will be no different. My transcripts are on the way. I've filed my FAFSA, and as soon as I receive my 1099 and a few more pieces of paper I'll be able to file my taxes and my FAFSA will be official. I need to look into CalGrants and finish up a scholarship application. In the meantime I have to research grad programs. One step at a time.

It feels AMAZING to be able to study what I absolutely LOVE!!!  I'm thrilled. Thank you.

What CFS/ME/FM Patients Want Well People to Know

http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=17792

This is a wonderful short article based on a survey of people with ME/CFS and FM (fibromyalgia) and it really rings true. I often feel dismissed, unheard, and unseen.

Personal Death Concepts

This is an assignment required for my psychology class which asked 10 specific questions such as why was I born, what is the meaning of death in general, do you feel fear or anxiety  over your own death, and does contemplating death case you to live differently, etc.  

Lauren Ide

PSY 156 Understanding Death and Dying

Professor Newell

Fall 2010

I believe that I was born to learn, to grow, to experience physical sensations, and to fulfill a purpose.  In my personal belief system my Spirit, my unique and perpetual essence, made a conscious choice to be born to my parents during this time and place in order to interact with specific people and to have specific experiences.   This belief extends to my understanding of the meaning of life in general: to have experiences, to gain knowledge and perspective, and to create.  I know that I am here to experience the rush of adrenaline-laced thrill, the agony of heart-wrenching grief, and the elation of new and lasting love.  Emotions and sensations don’t necessarily need to be understood only allowed and experienced.

During periods of introspection I have come to some understanding of my life’s purpose.  With the above stated belief of experience and a general meaning of life, I also believe it is my responsibility to seek specific experiences that call to me as well as to peacefully allow experiences that are out of my control.  I have gained an awareness of the personal satisfaction I receive when I am in service to my concept of higher power and to others.  Helping others by creating a sense of safety, mutual understanding, and kindness fills my heart with joy.  With practice I have also learned that I am also fulfilled when I create a similar healing environment for myself. I know that along with life’s purpose to simply BE, it is my path to engage in compassionate service to God, Goddess, and Universe.

Death is a transition to a difference plane of existence.  It is, and that is it’s meaning.  It is easy to see examples of transition in the world around us: winter giving way to the new life of spring is just as important to the seasonal year as the apparent “death” of vegetation during the dark winter months.  Although many who find death uncomfortable may often misunderstand this idea, death is a normal and healthy consequence of life.  The Spirit’s experience of death and the transition to the next plane is an important part of the collection of experiences in this life.

While I believe that my death will, like all deaths, have a ripple effect that will affect my loved ones and those close to them, my death will have the most meaning to me.  In keeping with my belief system of gaining experiences, my personal death experience may or not be the most important or memorable opportunity to gain perspective.  I wish a conscious death, one with awareness understanding of each phase of this “greatest transition.”

I hold a strong belief that what makes us “us” is a Spirit, an ethereal energy that resides here on this plane and in this “body suit” temporarily before moving on to what’s next.  All things are impermanent, including this physical body and this life.  Impermanent too is the experience of the Spirit in the next plane.  I believe that for a time the “I” that is me will cease to exist as I become one with the Divine.  After an indeterminate amount of time, because time isn’t linear only our perception of it is, then my Spirit will most likely again choose to be reborn into another body and another time and place to continue to grow, learn and experience.

I live with chronic illness and it happens to be the exact same diagnosis that my mom had, who passed at ago 56.  Because of this, as well as my own desire to connect with Spirit, I’ve spent a great deal of time studying my own anxieties and concerns about the deaths of my loved ones as well as time in self-examination about my own death experience. With my strong spiritual belief in Divine order and meaning, I have alleviated much of my anxiety.  I believe that there are reasons for everything and even though I may never know or understand what those reasons are, I am comfortable knowing that there is a greater purpose.  I do still have some discomfort and anxiety around the idea of a quick end such as a car accident or other violent death, but I work with the idea that whatever my experience is, then that is what is supposed to be.  I honestly don’t know how to make it through my day without the idea that there is a power greater than myself supporting me and guiding me towards my purpose and for the Highest Good. 

I was raised Roman Catholic, baptized, communed, and confirmed, although materialist science was also taught in my childhood home.  A perfect example was when my mom explained to me that I couldn’t take the Bible too literally and even though it states that the earth was created in 6 days (Genesis 1:1-31), that each of those “days” could mean an epoch or an era.  She would then use this as a teaching opportunity to explain geology or pre-history.  Today I understand the power in ritual, chanting and mantras, prayer, incense, etc, but I choose to use those tools to focus my consciousness and to connect to the Divine Source without a prescribed set of dogmatic beliefs.  I believe it is more important to have a personal and intimate connection to God/Goddess/Universe that feels true in my heart than to behave according to the rules of human intercessors.  

The experience of introspection and contemplation throughout my lifetime has led me to make different choices than I would have if I had continued with the same belief system as my family of origin.  I learn and practice present-focus, I live in the now and I do it right here, because it is only the present that matters.  While I have held these beliefs for many years, my active daily practice has improved since I received a diagnosis earlier this year that is not immediately life threatening but is life shortening.  Every moment and every action matters, every word I speak holds weight and power, and since I don’t know if I will have a chance to right a wrong, I make every effort to do it right the first time.  I make choices that others might view as risky, and I do it because I place a high value on having the experience, on surviving or completing a task or an ordeal.  I’ve jumped out of a perfectly good airplane, I ride a motorcycle, I am working on my Bachelor’s Degree and next year I’m moving to San Francisco to live near the ocean.  I don’t intend to wait for a physician to tell me I have limited time in this body to change my ways of living and interacting or to do something I’ve always wanted to do.  I already know that time is limited so I’m doing it now.  And if I don’t get to it this time around, time is also infinite so I know I’ll have another chance on my next turn around the wheel.

“Regret for the things we did can be tempered by time; it is regret for the things that we did not do that is inconsolable.”  Sidney J. Harris

A Face Lift

I spent about half an hour today giving my blog a facelift. And considering it's been a year and eight months (!) since I've posted anything, half an hour spent on my blog is a pretty big feat. I really think at this point in my life that if it looks pretty and feels fresh then I'll be more apt to post with more regularity. It will be fun finding out if this hypothesis is true.

So much has changed since I last posted and so much has not.

I live in Berkeley, CA now, and work in San Francisco. SoMa to be more precise. My major has changed, my life plan has been *completely* revised....and yet it hasn't. I'm still sick with ME/CFS...that just doesn't go away, but things have been somewhat better with my move and meds. Still no health insurance although I'm hopeful that will change this year with finally being a full time student again. I ride my bike, Lucy, Switch the cat is doing great, and I'm partnered with a wonderful Butch named Vick. I like Scotch and I've become a Celtic music junkie.

I continue to maintain my happy upbeat and positive attitude about life, because if I didn't I'd loose it pretty quickly. Life is good and I am blessed.