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. ;-)