Identifying the ideal support

The last few days I have taken time to meditate on what course of action, or in-action, I think would be best from here on. I know I'm tired of explaining myself to doctors. Explaining that SSRI's cause side effects and that I'm allergic to opiates, and that no I do not take pain medications despite my pain, no really I DON'T TAKE PAIN MEDS!!! That led me to think about what has been sustaining through this experience. I have my faith in God. I have my family. And, I am attending counseling. Being a counselor I think that is the least I could do. I have also had support from several of my classmates who are also counselors.
I was recently in communication with a friend, a classmate, and she told me about a career opportunity she is being offered in which she'll have a private office and will partner with a pain management clinic. What are the chances, right? I thought it was pretty cool that she would be able to incorporate her counseling degree, with her eastern holistic practices while working in tandem with the western pain management office. What a fabulous idea! Why don't other pain management offices do this? She's a terrific counselor, a quick thinker and very resourceful. But, she's also genuine in letting a person know "this must be horrible for you!" and "tell me about it" and "do you have a support system" and that's when her ideas kick in!

She was a little scared after learning about my experience and wondered if she would be strong enough to help someone like me. That made me think what I, and I think any pain patient, would want the ideal counselor to offer them. Counselor to counselor, I would tell her, think of the core conditions and you're offering us the perfect experience. To the layperson it translates as:
1) We want to be listened to, genuinely. We don't want to lay these burdens at the feet of our family because they already feel helpless that they can't take our pain away and make us feel better. ~ Men feel especially helpless because they are so used to "fixing" problems and being done with them.  These are not easy fixes like taking the garbage out or doing the dishes. ~ We often have to hide the pain from our children, no matter how bad it gets, or we have to miss out on family functions, which brings on guilt. We have to feel that its ok, that someone forgives us and that despite that our kids will turn out ok, we're just doing our best. ~ Women are generally caregivers and can suffer burnout from helping their partner through this experience in addition to carrying household duties. ~ A marriage can suffer if the couple does not keep sight that they are a team and are both working against the pain. They need to make time for each other, even if its just movie night at home while the kids are asleep or at grandmas. If they can't have sex, intimacy can still be found in any form that is still acceptable to both. It can be in the form of "snuggling" or just talking while looking at each other in the eyes. However, this cannot be one-sided experience, the person with the pain needs support and the partner will start building resentment.

2) To be believed. We are told so often by the medical community "it can't be that bad", that we just need to "loose weight and exercise more", or were just "depressed and anxious" which then makes us depressed and anxious. All the while we know we are hurting and the pain is real. Honestly, we are more likely to follow all of the previous advice from someone we feel is on our side and coming from a place that is caring, rather than from a place of judgment or "non-belief". Let our time with you be our sacred time where you trust us and allow us our grief for the life we have to mourn, and the life we have to adjust to because it is our new "normal".

3) To be witnessed. We want to be seen as a human being. Remind us that we are a person, a human being, and have the right to be live normal lives.  See us. Not a patient, or a number, and not even as a compilation of our multiple pains, conditions, medications. Remind is that we can start by "living one day at a time and if that's too much, then 1 hour at a time".  Slowly, gently, tell us that we can start with small steps like painting out nails one day, then lipstick the next, changing out of our sweatpants, washing our hair, shaving. . But, we want to be reminded, praised, and noticed for those minor changes and moments of growth that we do make. And, if we don't, its okay, you trust that we will make them when we're ready. We are not being judged.  

I've heard that statement "one day at a time, and if that's too much one hour at a time" from two different people involved in my care, they had no connection to each other, and its had the most impact for me. It helps me get the dishes done, get make-up on, sometimes run errands, and sometimes not, because I just can't do anything at all. And I know its okay. I think maybe my angels sent me that message.

I know my friend will be great.

This is it. This is my life.

I've allowed myself time to mourn. I don't know how long it will last but I feel I deserve it. Its not self-pity, its an adjustment period since I have to get used to the idea that I have exhausted all avenues towards healing and hit dead-ends. Yes, I have tried eastern-healing methods: chiropractic, massage therapy, trigger point-therapy (and they have both been so excruciatingly painful that I haven't been able to continue), supplements, meditation, hypnotherapy, even past life regression...you name it, I've tried it.

Yesterday, through swollen eyes, and through teary prayers, I know that God was sending angels my way to let me know that he had not abandoned me. That even this, he was with me. I heard him in the song playing on the radio, in the words of a friend over the phone, in the message of another friend on Facebook, and in the message in a little magazine that I had postponed reading until yesterday. Even the title rings true. It goes like this:

Everyone has a story worth sharing

My Journey

Occupy Your Life

by Shiloh Sophia

Whole Living Journal

There is no place else to get to and no other place you are supposed to be.
Honest.
This is it. Really. Your Life. Your own Life.
It might not look like you thought it would.
It might not feel like you wish it did.
But it is yours.

And so the question is...

What is stopping you from occupying it?
What story are you telling yourself about why you don't pitch a tent in your heart
and demand the truth about you aren't looking in the places where you are being
unjust to yourself?
What are you telling yourself about why you won't claim your life as it is...
Now? Instead of waiting for something else, better, more brighter, to happen.

What does it mean to occupy one's life?
What does it mean to truly LIVE in one's own body?
What does it mean to truly LOVE even when you are hurt?
What does it mean to have compassion when you yourself are feeling like a victim?

I want to know...what does it mean to you? To occupy your great life?
And Yes you can choose for it to be a great one, even with how it is right now.

What it means to me is that I live like I am living.
Instead of living like I am dying.
Even on days when it feels like my heart will never drop its oldest scabs and reveal
new skin.

What it means to me is to keep finding the YES in every single day.
To become present as often as possible and look around.
To live the questions.
To keep my hands in creation, in paint, in prayer, in poetry.
To stand with my sisters and brothers who occupy the world
with out chants and tears and trusts.

And to no matter what, to give my great work.
Whatever my great work is in each day.
To live it. To give it.
I want to occupy my life as I belong to it and it belongs to me.

There is nothing else that needs to happen in order to say...
I am doing it now.
The only thing we have to do is choose and keep on choosing.
Though rumor has it, it is easier to choose your life in the company of companions
who can say--Yes, I see you. Yes, I hear you. Yes, you are doing it.

Finally,
we remember that life is good after all and still on our side.
Even when the outlook is grim we have some understanding
that we are a part of a great unfolding. A mystery.
And that no matter how bad it gets, our response is still the same...
we have to keep on living and loving and giving and breathing.

And eventually,
not too far away we find we are willing to admit
through surrendering our old sorry identity that we are living it right now.
This is it.
In all its glory and all its mess and all the grace given and received.

We belong to life. An life belongs to us.
Amen!

Dis-appointment

The day before my appointment a friend emailed me and in her email she wrote "I hope you find what you are looking for at Cleveland Clinic". That made me stop and think. What was I looking for? Was I expecting a magic pill? Was I looking for them to think of one more diagnostic test that no one else had thought of that would shed light on what has happening in my head? was I looking for them to think of some "House" like diagnosis or treatment? I decided that what I was looking for was relief. I was looking for at least 1 of my many pains to decrease or subside. I often pray for it. I often cry and pray for it at the same time when it just becomes so overwhelming that I haven't slept for days, and can't sit, stand, open a jar, read a book...can't think or stop crying. That's what I wanted to find.

So yesterday I went to my appointment at Cleveland Clinic with my friend's statement in mind. I was not expecting a magic pill or one-step fix all, but  I was wanting some recommendations and insight that would lead to the relief of 1 of my pains. The 1 pain that at this time is not degenerative in nature and is "benign". When I walked in the doctor's office, the first words from her mouth were "I don't have a magic pill, or magic bullet for you. In fact your chronic daily headaches may never go away." WHAT??? What just came out of this woman's mouth??? NEVER GO AWAY??? She said a multidisciplinary program would work best for me...okay, I was with her so far. She said, "first we take you off of ALL of your medications, from Tylenol to Methotrexate." NOT GOING TO HAPPEN! "Then we put you on an antidepressant." KEEP DREAMING!

I listened to every word she said. She did not hear a single word I said. It didn't matter how many times I explained to her that SSRI's make me sick because of Serotonin Syndrome she insisted that I had to be on it. She asked what symptoms I had when on the SSR's, I would explain it was pull my hair out, vomit, go to the ER at the very first dose, sick (classic SS symptoms), she still insisted. Even though my doctor gave her a list of the all the ones that had been tried with the same results, she insisted that I had to be on it. Did I mention Serotonin Syndrome is potentially fatal?

Then we have the methotrexate she would discontinue. It is helping and because of it I am able to move my hands, wrists and knees (as long as there isn't a storm or its not too cold). It is supposed to slow the progression of the degeneration of my spine. She looked at an x-ray done at the Cleveland Clinic and stated "there's nothing there, just some mild degeneration and arthritis". Excuse me did you just use the word DEGENERATION and MILD? Yeah, that's how the one in my neck started. The idea is for it to NOT DEGENRATE!!! Flexeril is absolutely necessary or my spine would not move AT ALL. Asthma? I've had it since I was born and it has improved since I have been on the methotrexate. I haven't had a single sinus infection, or asthmatic episode.This might indicate there was an underlying autoimmune response that triggered it and the methotrexate isdecreasing that. Also, a doctor at THE CLEVELAND CLINIC, had a RULE IN of seronegative Lupus! Get your act together people! Get on the same page.

I will say, I wasn't opposed to not using Robaxin and morphine. However, I just had major surgery 3 months ago so it is not unreasonable for me to still have some pain, and that's what these two medicines are for. Therefore, they will naturally be eliminated as I recover from the surgery. But, we still have to solve the mystery of the continuous auras that began when I started physical therapy, and the why when I have physical therapy I get migraines that rank a 10 out of 10 on the pain scale.

So all in all, my visit to the Clinic was a disappointment; a dis-appointment. I left feeling hopeless and I have been crying since last night, at every interval that I can be out of the boys' sight. Today I'm having a real tear fest and I'm so glad that I'm home alone so I can really let it out. Its very cathartic, and I have insight when I emerge. However, I can't help but feeling hurt at the doctor's attitude and lack of empathy for real and genuine pain that I, and no doubt others, feel when they come to seek help. I realize its a headache clinic but when there are multiple conditions that need to be treated simultaneously then a TRULY multidisciplinary treatment plan with these other factors in mind needs to be created. Having tunnel vision is not in the patient's best interest, and frankly, seems reckless.

So, as the song goes, and with my friend's statement in mind: I still haven't found what I'm looking for. I'm tired. Tired of doctors. Tired of explaining myself. Tired of hurting. Tired of crying. So for now, I just want to rest, be still and breathe.

Parenting

Parenting while have a chronic illness is difficult. Extremely difficult. Parenting with several chronic illnesses can be harder yet. Add to that chronic joint pain in the spine, hands and knees which affect mobility on a daily basis and activities of daily living. Add to that chronic, debilitating daily migraine pain, 24 days out of the month. The remaining days are spent in recovery from a migraine which I suspect might feel similar to what getting run over by a Mack truck might feel like (just a little sensory image). Hardly feels like you're alive, its just one blurred pain filled day after the other. Sometimes it feels like I am just an observer in my kids lives because I'm limited in how invested and alert I can be from day-to-day. I'm limited in what activites I can participate in. Frankly, there are also some activities I just don't want to participate in (FOOTBALL!!! BASEBALL!!!) because I have NEVER EVER in my entire life been a sports oriented person, nor do I want to start now. But, if they want me to take them somewhere I may not be able to because the migraine auras impede me from driving. Being out in the sun during one of the baseball games (love the kids, hate the sports) will trigger days of excruciating pain. I am forced to choose, avoid the trigger and disappoint them now by staying home, or go to the game and disappoint them later when I'm in pain and can't spend time with them?

Despite this aching in my heart to want to do more and be more for them, I know that they are good, honest, respectful, considerate, and educated men. I also know that because of their care of me they have developed a sensitivity towards women, towards those who are ailing, and those who need help in general. I know that mine is really an unfounded guilt. One thing I can know for sure is that, sick or not, I have always been with my boys. They know this and I see the fruits of my commitment (not labor) everyday in their smiles and laughs and yes, even when they're oppositional because they can see me hurting and that can make them hurt too.

Sometimes I see parents that outwardly look "just right": kids get home and do homework right away, have structured play time, take a bath, dinner, together time, bed by 8 or 9, weekend have sports and play-dates, then to grandma's. It makes me think that something is not right. Maybe I'm just jaded, but anyone with emotions and the ability to think for themselves would not fit in the cookie-cutter mold; it's just not humanly possibly. So, why do people try so hard to put on that appearance? Why do they try so hard to make it seem that their life is so perfect? What's worse, they may believe their own story while the world reads right through them. After all, kids throw tantrums, people drown in debt, parents can be alcoholics, just as, parents can get very sick. What matters is not the outwards appearance, anyone can see right through that, what matters is the level of commitment felt in your heart and expressed in your deeds, such as being there everyday weekends included!

Professional Patient

I have an upcoming visit at the Cleveland Clinic, again. Its on Wednesday and, frankly, Wednesday can't get here soon enough. I have been pain free from the headaches for 3 1/2 days and I'm terrified that they could start again at any time. Rain and thunderstorms are in the forecast for the weekend and that is a huge trigger.

I've been busying myself contacting doctor's offices, hospitals (can you believe 3 in the last 4 months!) and even my optometrist, so that I can gather every possible shred of medical data the Neurologist that will examine me (understand poke and prod me some more) could possibly need or want, so she can make the most thorough assessment and informed recommendations possible.

Of course, first I peeked through the data myself, after all, at this level of "professional patient" I am fluent with the lingo and what I should be looking for: potassium, magnesium, vitamin D, B, B12, BUN, creatine, red blood cells, white blood cells, platelets, hematocrit, progesterone, sed rate, ANA, RF, C-reactive protein and what the "normal levels" for each of these are. Some of what I discovered was that a few months back (November) my progesterone level indicated that I was at post-menopausal stage. This poses a risk because the cysts on my ovaries and cervix continued growing resulting in severe pain. There is also a history of cancer in my family and unchecked the cysts could turn cancerous. I also noted the positive Rheumatoid Factor test. This is related to autoimmune diseases such as Sjogren's Syndrome, Systemic Lupus Erythematosus and Rheumatoid Arthritis. Accompanied by my often elevated sedimentation rate,which indicates inflammation in the body, (translation = something hurts) well then an autoimmune disease was indicated (and a lot of somethings were hurting!) But my ANA (Google it because its a long complex name) is always negative so Lupus can't (technically) be diagnosed; but I don't have nodules in the fingers that are a sign of Rheumatoid Arthritis either.

At this point you might be asking (as I often am)WHAT THE HECK IS IT THEN???? Right now it is called Undifferentiated Connective Tissue Disease. Right now you might be asking, WHAT THE HECK DOES THAT MEAN????? I don't know either, but apparently it is meant to indicate there is some issue with the connective tissue such as the muscles and ligaments, that connects us internally. NOTE: If you go to a hospital or Urgent Care they will NOT know what you are talking about. It is best to simplify it by saying "Its an undifferentiated autoimmune disease. I have a positive rheumatoid factor, but no nodules, and Lupus symptoms but a negative ANA" somehow they understand that better than "Undifferentiated Connective Tissue Disease". So why did they give it that freaking name in the first place if they are as confused as we are? Why not name it undifferentiated autoimmune disease and just be clear about the fact that they have no clue as to what the heck it is?

*I will provide a positive note. Since I started seeing my new Rheumy (lingo for Rheumatologist in our inner circles) he started me on Methotrexate and has slowly been adjusting the dosage with some gains thus far in that my hands and knees are hurting less. The proof is that I am able to go up and down stairs easier and I have been able to hold onto books and magazines longer, although I can't read a whole magazine in one sitting, much less a book. Small gains, but improvements none-the-less.

How it starts

It starts with "well you look good". Meaning, if you don't look sick you aren't sick and if you aren't sick then you should be at work and taking care of the house, and your kids, and your husband and yourself. Good heavens take care of yourself because if not your husband will leave you! And, any good mother should be able to keep with their kids. Wait a minute! I'M SICK, S.I.C.K. SICK. DID YOU NOT HEAR ME WHEN I SAID I'M SICK?? SICK.

Why do I feel I have to justify myself? Why do I feel guilty when I can't cook dinner? why do I feel guilty when I can't play a board game with my kid or take them to the movies? or when I sometimes can't even get up from bed and join my family in the living room? Why do I feel like a fraud becuase people tell me "well you look good" and I end up questioning myself and listing the many reasons why I'm NOT okay? the many medications I take to "look good", the searing pain that I live with even when "I look good".

The pain. The pain is always there. It is so constant and so much a part of everyday life that I check-in and "oh, yep its still there" after all it wouldn't be Monday if the pain wasn't there; or Tuesday; or Saturday; or 8:00 am; or 5:00 pm. Take your pick and body part, the pain is there. The worst pain right now is from the migraines. At last count I have been having 24 migraines days in a month. I have to admit there have been days that I have wished for a bottle of Vicodin so I could take 3 or 4 and let it take me into sweet oblivion. Alas, I'm allergic and that would only result in rebound headaches. After 8 days in a row I went to the emergency room so I could obtain a few hours of relief until I could get to my Neurologist's office to get a nerve block. The nerve block will last about a week and that will get me until an appointment to Cleveland Clinic. Hopefully the Neurologist at Cleveland Clinic can make some recommendations or shed some light towards some new treatment or explanation that may offer some lasting relief. HOPEFULLY..... MAYBE....

I also have arthritis pain. The worst of it is in my spine. Mostly because my Rheumy has put me on Methotrexate and has slowly adjusted the dose to where my hands and knees hardly hurt. We're still adjusting for my spine. In the meantime, it locks up and movement becomes limited. The bone if the spine itself has become softened, calcified and is slowly degenerating. The methotrexate is supposed to slow the progression of the Degenerative Disc Disease or Osteoarthritis. Yeah, usually it is found in old people (no offense to any old people :) and at 34 I have the spine of and old people! Woohoo, just imagine what I have to look forward to!

Does it sound like I'm okay just becuase I manage to tie my hair into a ponytail, wear clean clothes, (becuase my husband does the laundry and I take a whole day and sometimes two to fold it) and maybe put some eyeliner on?