Comments on "16 Things People With Chronic Pain Wanna Tell You"

I read this article ans felt so connected. This person definitely has a similar experience and philosophy to mine. Read this. Learn things. 

http://www.lifehack.org/285489/16-things-people-with-chronic-pain-wanna-tell-you

It's so reassuring to not feel alone, even just from reading a stranger's article online. I know I'm not the only one. There is amazing comfort in that.

I want the people in my life to read this list and really pay attention. It speaks some hard truths, but a lot of us spoonies need people to become informed. So my wish is that you'll read the list AND my personal comments which may apply to some spoonies, but definitely applies to my life. The article is linked above. Below are a few of my personal thoughts with the corresponding point from the original poster's list. 

1. We Don’t Make a Mountain out a of Molehill 

Whatever pain I am in, people underestimate...? That does sound accurate though WHY. I'm going to need you to overestimate how much pain I'm in. It's unbearable. Consciously remind yourself. No matter how bad I tell you it is, I'm trying to be tough and push through and downplay it.

2. We Need to Balance Actions Carefully

Become familiar with the spoon theory. Speak to me in that language, ya know asking if I had to borrow a spoon from tomorrow to get this done.

3. We Struggle to Find a Good Doctor

I go to Frederick, and Philly, and NYC for doctors that understand and care about me. This is normal.

5. We Try to Look Our Best

PLEASE PROMISE to never again tell me I don't look sick. It's not a compliment. Also, if you feel compelled to tell me I look good, just mean that I look nice. Don't make it, "you look good...you must be feeling better!" That's not how it works. I have an invisible illness, invisible means can't be seen. I have a chronic and incurable illness, this means I will never get better. 

6. We Don’t Ignore You

Pain and being sick and Blaze consume my thoughts. You can call me selfish if you want, but after my health and Blaze, there's little room for much besides my family. It's not personal.

7. We Know Our Illness Won’t Go Away <AND>

14. We Don’t Want Your Medical Advice

It's thoughtful when people do research cuz they care. It's annoying when people assume some fad diet or exercise will be a cure all for any medical thing without knowing what's wrong with me. 

9. We Don’t Always Know How to Manage Our Pain

Sometimes pain demands sleep and tears. And that's all that can be done. It sucks. But it can't always be helped or lessened. 

12. We Don’t Have a Job for a Reason

I wish I had a job.

13. We Don’t Want Sympathy, We Want Acceptance

I wish I had acceptance.

F the "F" word in CFIDS (it confuses people)

I haven't blogged in a while. It was a mix of reasons. I had no big news updates on my health. It's all as it has been. I doubt daily updates about PT or not getting out of bed are of interest to anyone. So I've just shared some rants or pictures on FB and IG. I was going to put this rant on FB but it got long, too long for a status.

So here it is. I've been sick for over a month, because CFIDS and interaction with humans carrying germs. In the last week and a half I've been to see a doctor three times. Not much came out of this, except I have a sinus infection, I don't have strep throat, and CHRONIC FATIGUE AND IMMUNE DYSFUNCTION SYNDROME is the worst name for this disease. Few doctors know what to do with it. So instead of being treated as a patient who can't kick an infection because of a weak immune system, I'm treated as a head case or as though CFIDS isn't real. Instead of getting help I've been defending my condition and my medical history. I've been attempting to educate a doctor on the realities of my life, not to be condescending, but in hopes of receiving better care. Life with a deficient immune system is a never-ending series of doctors, and my experience has been of the extremes: the doctors who get it totally understand and are amazing, and the docs who don't really, really don't. 

So primarily for my need to vent, here are pieces of my exchange with the doctor:

Me: five to seven day courses of antibiotics tend not to work for me, because I have CFIDS. I've literally ended up taking antibiotics for 9 months in a row because of my immune system.

Doctor writes a script for a 7-day treatment. Upon seeing me for a follow up 11 days later, during which time I've gotten worse, she says, "well, it should've worked. It's the best antibiotic."

(My body sucks. It doesn't respond to a 5-day treatment or a 7-day. This is why I try to avoid antibiotics, in hopes that an infection will run it's course. Because otherwise I'll have a month of antibiotics. I know it "should've" worked, but having CFIDS means a lot of medical "should" and "should nots" don't apply.)

Dr: I'm going to recommend that you follow up with another doctor, see about all of this stuff. The sinuses not clearing up, the sore throat, the tender lymph nodes, the pain, needing to use your inhaler... You should get some tests done

Me: well, I have Chronic Fatigue and Immune Dysfunction Syndrome. And with that chronic sinusitis and chronic bronchitis. This sucks but this isn't abnormal for me.

(Do I need to get you a pamphlet on CFIDS? I don't need tests. I've already had all the tests. My thyroid is fine, I have high levels of various viruses in my system, I don't have low levels of immunoglobulins, etc etc etc. I've met the criteria for a CFIDS diagnosis, and eliminating other possibile diagnoses three times in my life; one if those times was a year ago. Every time I have hoped for a different diagnosis but this is what CFIDS is and does. This is it.)

Dr: what day will that medicine run out?

Me: I'm not sure, it's in my pill case, so I don't see how many are in the bottle

Dr: are you taking this as prescribed?

Me: yes, twice a day

Dr: I don't think you're taking it as prescribed

Me: I don't take it from the pill bottle, because I have a weekly pill case. I fill it up with my appropriate doses for the whole week in advance. That's why I don't know how many I have left, they're already in the case

(Because the patient must be wrong. Otherwise maybe the doctor is wrong or the medicine doesn't work!)

Me: I also have this rash. I know what it is; it's an allergic reaction to surgical glue used to close an incision from an operation almost 2 years ago. It doesn't flare up often, but when it does my Hopkins doctors say I'm supposed to use a topical steroid cream.

Dr: you're already on oral prednisone. You can't mix that with a topical steroid. The 6 day pack should cover this. It'll clear it up. 

Me: even though there's only 2 days left of prednisone and this rash started when I was already taking the prednisone orally?

(*bonus* we came back around full circle to the results one should get from medications and how my body doesn't work that way. Bam!)

Spoon Theory

Please take the time to read this story. It has become the universal language of chronically ill people. The story below was written by a woman with Lupus, but it works for all of us. (I don't have Lupus, in case you're new to my blog.) We refer to ourselves as "spoonies" and through this brilliant story we are able to help our loved ones understand our struggle a little better.

As you get into the story please note that the author's experience is true for me. She talks about having to overthink and over-prepare for everything; this is how life is for me: I cannot just get dressed and go. I have to consider everything. I have to worry about the weather and which symptoms are flared up the most. I have to dress for that. My level of personal hygiene depends on how I am doing each day. I am a night showerer because showers take too much out of me--if I shower in the morning I can't do anything that day; if I showed at night I can collapse when I am finished. Is my bad foot swollen? Can I put a sock and shoe over it or do I have to wear some type of flat that is open on top. (This results in me wearing Sperry's to physical therapy and exercising in them.) Each day I look in the mirror to see if the bags under my eyes look like black eyes, and some days they do. Cold aggravates my symptoms terribly. Even in the summer, I bring a sweater everywhere, just in case. But at night I have to make sure the room is frigid because I get terrible, awful night sweats.

This is a state of existence that isn't normal for most people; even my husband forgets, at times, that I have to process life that way. My husband and I don't use the language of "spoons" day-to-day, but we are talking about the same thing. The author speaks about having to worry about doing too much today and borrowing spoons from tomorrow. When making plans, Kevin and I talk about how I'll be "dead" or "crashed" or "useless" the following day. And this is truly how we make plans: "Well, if we go to dinner with your parents after PT on Wednesday, I'll be dead Thursday, so we can't go shopping until Friday..." Recently I was overzealous in planning a three day stretch. Day 1 required walking more than I typically do in a whole week. The following day I had to take a morning shower (eek!), go to a doctor, and I had plans to go out and be social that evening. Day 3 included a morning appointment and dinner plans with my 91-year old grandmother & 90-year old great aunt. This is, for me, an impossible schedule. I don't know what I was thinking (that I was normal?) when I scheduled this, but I couldn't do it. I was completely dead by the end of day 1! But I had to keep going--both doctor's were appointments that I couldn't miss. After showering and dragging myself to my appointment on day 2 I crashed and couldn't go out that evening. I had to accept that in order to make my appointment on day 3, I had to stay in the night of day 2. I hate it, but that's my reality.

Despite hating some aspects of living this way, I agree with the author about the benefits: living with limited "spoons" forces you to prioritize. We don't waste time on unimportant things. The people we make time for are precious to us. We don't have the luxury of taking anything for granted. So enough of me relating to the story below. Please, please, please read it!   

The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said, "Here you go, you have Lupus." She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons." But when you have to now plan your day, you need to know exactly how many "spoons" you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said "No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make yourself something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your "spoons" are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons," but just think how hard tomorrow will be with less  "spoons." I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons," because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly "Christine, How do you do it? Do you really do this everyday?" I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared."

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons."

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said "Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted "spoons" and I chose to spend this time with you."

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons."

© Christine Miserandino

CFIDS & HIV/AIDS; Makeup or You Look Sick

When I describe my illness as an "immune deficiency" people sometimes think I have HIV/AIDS. I understand why that confusion happens. But I've never been able to explain it, because I don't have HIV so I can't speak to what it's like.

I cried when I watched HBO's "The Normal Heart" back in May. The story is about HIV/AIDS in the 80's, but it felt like my story. Some of the symptoms are the same, but it was more than that. Their struggle to be recognized is mine. Their fight to get real research done is mine. Much like HIV/AIDS then, CFIDS is still--now--ignored by much of the medical community. The funding toward research is a joke. And many people do not take the disease or patients seriously. By the end of the movie I was enraged thinking of those similarities. Am I three decades away from seeing a movie about the journey of CFIDS sufferers?

Through my sad and angry tears, I was able to choke out, "It's not fair! They get to die at least; we have to live like this forever." I said that to Kevin privately and it wasn't a statement I thought I'd share widely. I don't mean to trivialize something so painful and shattering as AIDS. However, the sad truth is that I, along with millions of other chronically--but not terminally--ill people have learned one of life's deepest secrets. It is this: There are things worse than death. Death can be a reprieve from horrific, endless, incurable pain. Some diseases have the ability to strip every bit of "quality of life" away from a person, but leave them aware of being alive without really living. We fight and hope and pray and wish for cures. We try every experimental solution. We don't want to die; we want to actually live. But we know that if given a guarantee of life staying this way until an old age death or dying young from it, we wouldn't choose decades like this. Death isn't scary, living like this forever is. 

So why did I decide to tell you about that "it's not fair" statement, the one that I was so sure I wouldn't share publicly? I came across a few quotes from medical professionals qualified to compare HIV/AIDS, and just like that my feelings were validated...

"My H.I.V. patients for the most part are healthy and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in or care for their families. I split my clinical time between the two illnesses [AIDS and CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it."

Dr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami

"[CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades."

Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University

http://cfsresearchcenter.org/index.php?option=com_k2&view=item&id=70:about-cfs&Itemid=721

Crazy, right? So yeah, it's kinda a big deal. It's pretty serious. Let's move on to Chronic Illness Cat and one of the classic spoonie-life struggles.

This is what some days look like:

But, why? Why does my face look like this? Why do I have black eyes? Why do I have a rash? Why is one eyes partially swollen shut? Whyyyyyyyyyyy?

(I woke up like this.....lol, Queen Bey.)

This is what I do to hide it, if I have the energy or give a damn, and it does result in the inevitable "why are you wearing so much make up?":

(You can still see the tired, but at least it's a little disguised.)

And this is humiliating and infuriating:

Oh btw...

The idea and motivation [to get over myself] to use a wheelchair came from this wonderful article: http://m.huffpost.com/us/entry/5548406

Physical Therapy, Part 2

After my first PT session, I had a really bad night... As you know. So when I went to PT yesterday I told them about it. I said, "I know my one job while in here is to tell you if ANYTHING hurts, and nothing hurt during last session, but it was very bad after." We had a lengthy talk about it, and how some days I do have a bad day or night, just because. Or maybe the storms agitated it.

My therapist (well, student-therapist) had been planning on doing something slightly different this session, but decided we should do the exact same stuff and see if that caused a bad night again. If it did, we'd know that they needed to find a way to be even gentler, and they're already only doing Grade 1 stuff on me anyways. She said the one thing is if it causes a bad night, but then I feel some relief the next day, that's okay. "Sometimes neuro-mobes cause a slight flare-up, but then it feels better after."

Yeah, no relief today. But another bad night last night. I was up until nearly 3 am. At least this time I had enough sense not to try to tackle the stairs alone. I stayed in bed with my boys, until exhaustion took over and made me pass out. I guess next week in PT we're going to have to dial it back somehow. :(

Oh, and yes I still have all the sinusy/cold-like symptoms. But I'm still trying to avoid my 4th antibiotic in the last 6 weeks. I have to protect whatever miniscule immune system I have.

Days of Rest, Physical Therapy, Sinus-y, and Stairs

The last few days I've been developing a sore throat which keeps getting worse and worse. It has grown to include ear pain, sinus pressure, mucusy congestion, sneezing, and all sorts of other fun symptoms. I regularly take allergy medicine, both a preventative in the morning and Benadryl at night. I'm also fairly certain the monsoon rains have temporarily wiped out all allergens. I'm also on an antibiotic (for other stuff) so I'd like to think I didn't manage to get a sinus infection while on that. Unfortunately a sinus infection is exactly what this feels like. But who gets those in June? Ehh, people with no immune systems I guess. Still, I'm trying to see if this yuck will run it's course, because 3 antibiotics in one month seems like plenty to me. A fourth seems like death to the traces of whatever immune system I have left. So I'm taking my nasal spray and drinking my homemade tea, a blend of eucalyptus and mint. 

Eucalyptus is a decongestant and an expectorant, with natural antibiotic properties. Mint can also relieve congestion in the respiratory tract, so it's useful in treating bronchitis, sore throat, or a cough. It also can be used to reduce a fever. Mint is a soothing herb and can be used to treat headache, backache, and neck pain. So this is my super tea. 

I love that the steam is visible in this picture. Piping hot. 

In other fun news, I fell down the stairs last night. Sometime after 2 am. I wish I could tell you that's uncommon, but it's not. That's why I almost always use Kevin's help to go up and down stairs. And if I'm being "independent" I scoot down on my butt. Or go very slowly, with a death grip on the railing. 

But last night, in the middle of the night, nearing the witching hour, unable to sleep, in pain, for a foggy moment I thought I was a normal person and approached the stairs as such. Luckily for me and tragically for him, Kevin is a light sleeper. He woke when he felt me get out of bed. I can only assume he figured I was going to the bathroom and didn't think twice about it. Until he heard some thuds and crashing sounds. Then he came running --yes, because he's a normal person he can RUN down stairs and be okay-- to my aid. He tended to me, asking what hurt and hugging me. I cried, half out of pain and half out of frustration. 

After making sure I was okay, Kevin asked me what I needed so badly from downstairs. I told him an ice pack. I've been in extra pain since Thursday, because of starting Physical Therapy, and my session earlier in the day was responsible for keeping me up at night. So he got me an ice pack and took me upstairs. 

As is typical for us, I profusely apologized and thanked him, feeling terrible he has to deal with such events regularly. And he told me I had nothing to apologize for, he loves me and it's not my fault. 

This is a concept I'm still working on learning. I'm in the process of embracing this lesson. 

As I'm writing this blog, my little monster is staring me down and whining and whimpering. We JUST went outside so he could go potty, and he got a treat when we came in, so I'm not sure what he wants, other than for me to stare back. 

Anyways, back on track... Physical Therapy. I started Thursday and it was hellish. Day 1 of PT is always an evaluation to document where your body is when you begin treatment: range of motion, pain scale, severity of symptoms. So they did all the painful stuff my doctors do, and then some more. They warned me I'd have a rough few days following, and they were right. It certainly caused a flare up. 

The good thing was they can feel just how bad I am. It's not me saying I'm in this much pain, they can literally feel it when they touch my body and move my neck and/or arm. I can't begin to explain how validating that is. There are definitely days when people with a chronic illness (or maybe it's just me) feel like they must be crazy, like it must be in our heads. But then you see a doctor who diagnoses and evaluates based on touch rather than listening to your description or looking at X-rays and your nightmare is confirmed to be real, and really that severe.

They really can and did confirm I have TOS, still, just as bad as I did pre-op, and if anything I have more symptoms from removing the muscle. Not TOS symptoms, but pain in my neck. Apparently the middle scalene (the muscle I had removed) is partially responsible for the movements of the cervical spine. Meaning, for the last 2 months my spine hasn't been moving the way it used to, thus causing extra pain. 

Because I am so "pain dominant" and have this particular diagnosis, the protocol they follow with me will be remarkably slow and subtle. They said this isn't a condition they tackle with a "no pain, no gain" approach. Most of my session involves laying there and having specific nerves gently manipulated by the therapist. They've instructed me to tell them if it hurts, even ever so slightly. Everything (except that initial eval) should cause me no pain or feel slightly better. 

Yesterday's maneuvers didn't hurt while I was there, but apparently they did aggitate me. Remember, I fell down the stairs trying to get an ice pack for the pain. I can't even begin to describe how...nothing these maneuvers are. I mean, one is literally wiggling my pinky finger. Yet the therapist tells me they can feel my body resist and tense up, if they move a smidge past the gentlest pressure and angle. It makes me feel slightly pathetic, but like I said, it's also incredibly validating to know the hell I've been going through is 100% real and I'm not crazy. They also can feel that my top rib on the left side is at least a thumb widths higher than on the right side. So that's definitely part of the problem. They are optimistic that they can help and said just because it's that bad doesn't mean I definitely need it removed. 

My therapist is very knowledgeable in both TOS and CFIDS, so I feel like I'm in capable hands. It'll be slow work, but if anybody can help me to avoid having my rib removed, I believe it's the people at this practice (Fusion Physical Therapy). Because the top left rib is so high, if they can help, I'll have a life of maintenance ahead of me -- it won't be a few months of PT and then I'm cured. But hopefully I'll get to a point where I can function on that maintenance program. 

Partly because of PT, the last few days have been a lot for me. Like I said, I started with my hell-eval on Thursday. On Friday I had a rough doctor's appointment that also exhausted me and drained all the energy from my body. Kevin is going through a lot with the end-of-school-year hustle and bustle, so he had no complaints about just resting Friday afternoon/evening and all day Saturday. We made pancakes for brunch both days, but besides that really laid around doing nothing, just relaxing. We both needed it, but even that wasnt enough for me. 

Sunday was Froehlich Family Day at Nationals Park (for the early game). Once a year, my father-in-law treats everyone to a game together as a family. Tickets, food, and drinks are all on him. He and my MIL have club level season tickets, but for this game we were all together in section 126, just off the first base line in foul territory. My brother-in-law and his wife came and brought our nieces too. It was really great family time, but a very hard day for me. It was sweltering hot, and some of my meds make me hot anyways. Plus being run down from Thursday and Friday. Plus my medicine that makes me sun-sensitive. I spent 2 innings up near the food shops, just to get a break from the sun, but I did manage to last the whole game. 

That's it for my updates. But before I end, I want to tell you why Blaze was staring and whining earlier. He didn't stop, so I finally went over to him because sometimes if you do that he'll lead you to what he wants. So he took me to the stairs to go to the basement to get our back, paused, then took me to the front door, indicating he wanted a walk. I told him we had to wait for his daddy to get home from work, for our afternoon family walk, but that we could go out back again. I figured I must've unknowingly rushed him and he needed to poo. So I took him out back --again-- and sat on the HVAC fan to stay out of his way. He sniffed and explored and seemed quite leisurely. Not needing to poop. He settled himself down on the slab out back and laid down to sunbathe. He had always loved laying out in the sun, and it's a gorgeous day. I tried to go inside and sit just inside the door, since I'm sun sensitive, but he followed me inside. So we compromised. I opened the living room curtains and window and put some pillows under him so he could lounge on the top of the couch, as he has always liked to do. He thinks he's a cat. The compromise sufficed. He was happy to get sunshine and fresh air, and I was happy for peace and quiet.