Battles vs the war

This is one of the worst and most difficult parts of chronic pain. It's 12:23 am as I write this, exhausted beyond belief. My brain is tired, my body is beyond tired, yet here I lie in so much pain mere breathing is painful.
I've stretched, I've changed positions, I've tried heat and ice, I'm listening to my "be strong" music😉, but nothing is helping.
To be specific my spine feels as though it is grinding together like rocks with sharp edges and no padding. My ribs become very inflamed when this happens so taking a deep breath is difficult and requires concentration. A regular breath is just painful.
I'd like to rip my spine out of my body at this point in time because there are no more medications I can take right now, no more positions or things I can try. I'm stuck. I'm unable now to move due to the pain, and it's beginning to cause a lump of nausea in my stomach and throat.
During my days I try to hide what I can, be strong and make it through for my kids, my husband, my friends, family AND myself, but late at night when there are no more options for pain relief and you realize all you can do is lie here and live with it, that's when reality sinks in. No more distractions, no more acting, just you and the pain. There have been more nights like this than I will ever count. I won't count them because the point is just to get through it again however you need. Being mad, sad, frustrated or depressed, even tears at moments like this don't show weakness, it's a battle, not the war, and this battle sucks. But I don't dwell on how much, or what it means. As soon as your brain acknowledges this level of pain as a never ending cycle and not just one bad night, when you acknowledge that this is part of the life you will live this time around on this Earth, then you give the pain too much power and that, my friends, that's when you've lost the war.

My infusion day or "bliss in the chemo room"

This is my view for half of the day today. The chemo center at Kaiser.
Every 6 weeks I have an infusion of Remicade, my immunosuppressant. An infusion means basically that they need to put my medication into my body very slowly over a long period of time through a filter. In this case I'm usually here for about 4 hrs start to finish.

I watch the seriously and sometimes fatally ill come and go as I sit here and I count my blessings.
For some a day spent with an IV in their arm for hours sitting with chemo patients, nurses and Drs may not sound like a good time. Some, who dislike hospitals and Drs, may feel it would be awful and torture. I've heard all of these opinions from many people.
For me it's a miraculous, relaxing and fascinating day.






Those of us who tip the scales on the grateful optimist side of life do look at the world (glass) as half full. Whatever suffering we may be going through I can promise you it could always always be worse. This day reminds me of that. Without using or taking away from these brave souls I see in this room, this day makes me grateful for what I have, not bitter about what I don't or why I'm there. It makes me thank the gods that I can get up and walk out, for some can't, I'm thankful for my hair, those extra few pounds I may be carrying and for the fact that my medication isn't fighting to keep me alive, just give me a better quality of life. It's humbling to talk to these people and have them smiling and laughing. And it gives me strength.
This day is also, I will freely admit, quite relaxing for me. I've worked in the medical field for 16+ years and have had major medical issues since I was 20 years old so hospitals are not scary to me. Quite the opposite, I feel very at home and safe in them. I love the smells, the sounds, the people, and I get to experience all of this kid free! No children allowed in the chemo room and you're only supposed to get up for the restroom. Think about this moms and dads. 4 hrs sitting in a chair that reclines, with as many pillows, heated blankets and juice or water you could ask for. Not allowed to get up, not allowed to make phone calls. It's like a mini vacation!!!! Stuck there with my book, or music, or even just Pinterest or Facebook. You see I have no choice! I can do nothing else.
And finally it is fascinating because, in case you didn't know, I'm a talker. I enjoy meeting new people each time, catching up with my nurses. I also love the medical jargon I hear and things I learn.
Now, my body doesn't love this medication, so I do occasionally land in bed for a day or two, nauseated (and one unfortunate incident of puking on the side of highway 101 while M and kids stayed in the car-oops😉) and quite dizzy, so much so that I've been unable to drive home on occasion. (Thank you again to amazing friends for picking me up!) So, we've learned to do them on Friday so I have a weekend to recover.
I also don't want to make light of these meds, especially if anyone is out there listening who also takes them. They are dangerous and the last resort. The problems /complications they can cause are worse than my disease because the outcome can be fatal. I'm not trying to be dramatic, just honest. So, when we were given the option M and I had many in depth and serious discussions about quality of life vs quantity. And we decided what good is a long life if you can't live it? And this medication is currently the only reason I have even the small semblance of a life I have now. It's the reason I can get out of bed, play with my kids, pick my daughter up from school and even just make my son lunch. Because believe it or not those things are impossible without it.

So, my friends, yes the medication may be harsh and medically heinous and yadda yadda yadda, BUT the way it is delivered is somewhat divine and actually provides me with sanity and rest. Just a little slice of heaven in a cold chemo room.

Sinus infection defeated!!

We have defeated you sinus infection!

It took massive amounts of Sudafed, Mucinex, Flonase, saline spray, 2 courses of antibiotics plus ultimately a CT scan of my head and a visit to an Ear, nose and throat specialist, but ha ha! We got you!
Now we can go back to our regularly scheduled programming.

ENT gave the all clear after seeing my CT scan, so before I had even gotten to my car I emailed my rheumatologist asking for my immunosuppressant (remicade) back! (Per my previous posts THIS was the big issue with the sinus infection. Aside from the whole head exploding thing. Without an immunosuppressant I can barely function). She responded within the hour and by the end of that day the appointment for the Remicade infusion was scheduled for 2 days later. I've never been so happy to sit with an IV in my arm for 3.5 hrs in a cold chemo room!!!

And it all only took 6 weeks. For one sinus infection.
I mean seriously?

Back in time to one of the beginnings... (Part One)

Many of you haven't known me beyond the 7 years when this all began, so I thought maybe it would make a little more sense to explain how it all started. 

On January 18, 2010 I was standing in the hallway at work speaking to a co worker. At the time I was around 16 weeks pregnant and was finally feeling human after suffering severe morning sickness that had resulted in a 10 pound weight loss up until this point. 

As I was standing there I suddenly felt as though someone slammed me in the lower back/back of the pelvis with a sledgehammer. I collapsed onto a table next to me out of shock and the sudden inability to stand up. My coworker got my rolling office chair for me and rolled me back to my office where I shut down my work for the day, luckily it was about 6pm, and hobbled to my car and home to rest on the couch the rest of the night. 

Now, I had never been pregnant before, so I took it in stride. I went back to work the next day, in a lot of pain, but until now pregnancy had been pretty miserable, so I just figured it was part of it all. I had been diagnosed with Fibromyalgia several years before, which had not given me too much trouble until then, but my drs figured that was basically just making the normal back pain of pregnancy more severe and causing this pain. I have a high tolerance for pain, and at that time I had no reason not to believe them. I've learned a lot about blind belief in drs since then....

Over the next several weeks the pain grew steadily worse eventually leading to the inability to walk much or sit or stand for any length of time. After coming home doubled over in pain and tears one too many times my husband and my Dr decided I was done working for the remainder of the pregnancy. At this point everyone was assuming, and saying, that once I had the baby everything would be fine and go back to normal. 

I should note that pre pregnancy I was extremely active and in excellent shape. I worked out at the gym for an hour 5 days a week and did pilates 3 days a week. I had worked 2 jobs, one involving constant travel, and loved to play tennis and swim and just be active. My husband and I had remodeled our house mostly ourselves with me tiling bathrooms, ripping out windows and hanging cabinets, so "resting on the couch for the remainder of my pregnancy" was not something that made me happy or comfortable. It was against my nature to sit still, so those were tough annoying months, however everyone said they were temporary and it was better for the baby, so that's what we did. 

Well, childbirth came and went and I was still stuck on that darn couch. Through my OB and my primary Dr there began discussions about the Sacroiliac joints and the damage pregnancy can do to them. The location and symptoms were right on, so off to the Pain clinic I went. 

I could write an entire post on the chronic pain clinic, none of which would be flattering, so I will refrain. I will just summarize that I was part of this clinic for nearly 4 years. During that time I was diagnosed with Sacroiliac joint dysfunction (the joints connecting my spine and pelvis were not working properly). This did eventually turn out to be a correct, but grossly incomplete diagnosis that cost me many years of pain. 

The treatment for this turned out to be narcotics, 3 targeted (directly into the joint under sedation and x-ray) steroid injections, 4 rounds of radiofrequency nerve ablations (burning of all of the nerves leading to those joints so I couldn't feel the pain), anti seizure medications, trigger point injections (saline injections directly into inflamed muscle, yes, that hurts, a lot), more narcotics, a low dose anti depressant, electrical muscle stimulation, physical therapy.... And I'm sure other things I'm forgetting because it seemed like they were  just pulling things out of the air sometimes over those four years. During this time we discovered I have a severe intolerance to anti inflammatory medications such as ibuprofen or Aleve, and to anti seizure medications, and that anti depressants don't help pain much in this case. The only thing out of those that worked effectively and consistently were the nerve ablations. They finally allowed me to go back to work and to actually start thinking about baby #2. Oy. 

Pregnancy #2 went similar to the first (other than the massive weight gain that boy caused!) in terms of back pain, but we knew we had those ablations in our pocket for after the baby was born so once again it was just a waiting game. 

Congratulations! Baby boy came along by c section, because my pubic joint dislocated during pregnancy because of the instability of my Sacroiliac joints. It was a long recovery, but once I recovered from the c section and dislocated pubic joint, with the help of in home physical therapy, we ran in to the hospital for radiofrequency nerve ablations....and they didn't work......

 The answer given when we asked why was "sometimes that happens". I attempted to go back to work like I had planned and left in convulsive tears and pain a mere three hours later after just attempting to sit in my chair for a meeting. My wonderfully understanding and compassionate boss and I came to the conclusion that this wasn't going to work and I left my job of 13 years on long term disability. 

Whoa, the emotions from that left me reeling and suddenly I was a stay at home mom, which I had never planned to be. I felt inadequate, useless and like I wasn't pulling my own weight. My life suddenly had different meaning (though at the time I felt that meant "none") and I had to adjust quickly to that, as well as the fact that suddenly I was left without options to make this excruciating pain calm down enough to function. I could hardly stand up and could do nothing without the aid of my trusty pain meds. With a one year old and a four year old. 

The very last option at this point was a surgery we had looked at and dismissed before. At the time there were other things to try. So, into my chronic pain Dr I went, bringing my husband knowing he wouldn't let this Dr bully me as he usually did, and we requested a referral to a surgeon and imaging of my spine. Believe it or not, no MRI had been done at this point. Only x Rays. The Dr fought us on these points to the degree that when we left M said "I think he wants you to go to the surgeon and have the surgery and have it fail just so he can say he told you so." This Dr was not our favorite but a necessary evil in the system. All he ever wanted to do was give me more pain medication to make me go away. Ultimately, our relationship ended in a yelling match over the phone because I wanted to go off some of the pain meds. I didn't want to be a zombie, I wanted to treat the problem and I wanted my life back. He wasn't fond of that plan. 

So along to Ortho 40 mins from our hours we went. The orthopedic surgeon we saw was fantastic. He was thorough and compassionate. For the first time in 3.5 years I felt like someone was on our side; this brought me to tears in his office in all honestly. He said the words "let me champion this for you. We'll figure it out" and I realized at that moment how unsupported we'd been and how much this had taken over our life. He believed something was missed in my diagnosis. And he couldn't figure out what he was seeing on this MRI I'd finally had done around my Sacroiliac joints. So, he sent me off to his personal friend and colleague in physical medicine and rehabilitation. She was equally caring and compassionate, thorough and showed a genuine interest in helping me. This was the first time in so many years of pain that rheumatology was mentioned. "There's something wonky here on your MRI that I'm not sure about, I think there's something rheumatological going on." She saw the same thing on the MRI the previous Dr had seen.

So, off to rheumatology I went. 

Before seeing me in person or speaking to me the rheumatologist diagnosed me. It was such a straightforward image to him and so obvious. It only took getting to the right Dr to have this happen. For those who've lost count this was Dr #6 and nearly 4 years later.

His diagnosis was bilateral sacroiliitis, severe inflammation of the Sacroiliac joints to the point it showed on an MRI. When I saw him in person within 5 mins "there's only one thing that causes bilateral sacroiliitis and that is an autoimmune disease called ankylosing spondylitis." This is a disease where my immune system attacks my healthy body as if it is enemy tissue (like a cold virus or a torn muscle) and does it's best to destroy it. It happens to start in the Sacroiliac joints and moves up the spine and on to other joints, tissue and organs. This causes major inflammation, extra bone formation and lots and lots of pain. 

So we had an answer. Finally an answer! And honestly one we didn't even know we were looking for. The time from requesting the referral to orthopedic surgery and the MRI to the final diagnosis was less than 3 weeks. After nearly 4 years, our lives changed dramatically in a mere 3 weeks. 

So now what? 

Around the time it all began

Blessings, kindness and coffee.....

One of the things I strive to be is "thoughtlessly kind". It seems to be the motto of the amazing group of friends and family I have around me also.
Words really cannot even express how blessed I am, but I'll try😋
I don't know how aware my friends are of how miraculous they are, and how valued, but I'm here to tell you and them.
There is that saying "to the world you are one person, but to one person you are the world". Aside from the romantic bent of this saying, to me this saying reminds us it's all about perspective. A small favor or a simple thought or kindness may not seem like a big deal to you as you do it, but to the person you do it for that may be a miracle and exactly what they need to keep going that day.

So, today a dear friend brought me coffee from my absolute favorite coffee place. We were supposed to meet for breakfast there, but I had to flake on her at the last minute because I'm still feeling so poorly (did you hear I have a sinus infection? True story). Instead of this friend being upset that I cancelled just before our meet time, that we've been trying to schedule for months by the way, or even just saying "ok, no problem I hope you feel better" which would still have qualified as an awesome and understanding friend, she went to the place we were supposed to meet, got me my absolute favorite coffee and drove to my house to deliver it to me. With half n half, exactly the way I like it. (Without me telling her, she just knew).

Today I'm lying in bed in our guest room bundled in a blanket in my 70 degree house, watching my 3.5 year old play on the floor and trying to participate in his play as much as possible. I'd like to be curled up under this huge down comforter, with my painful eyes closed and drift into oblivion where there's no pain, but that's not in the cards until my husband gets home later. (That's a whole other post...)  So, the thought of getting out of this bed at all makes me sad and full of dread.
Knowing without me telling her, not only did this friend bring me coffee, she let herself in to my house (we have a door code) to deliver my coffee to me, so I didn't even have to get up.

I don't know about you, but lying in bed, feeling like crap and having a dear friend who has seen you at your worst and best, (today being closer to the worst side of the scale) bring you your favorite coffee in bed really turns that day around from total crap to a pretty good start. It honestly makes me tear up to think about it and to fervently count my many blessings.

Throughout this latest health journey of 7 years, friends (and family of course, but we have none very close by so friends have really become family) have taken my kids for the day or even just for an hour so I could rest, picked things up for me at stores they happened​ to be at and just thought of me, made my family dinner, brought me treats and candy:), driven my kids where they need to go, picked me up from hospitals when I was too sick to drive home and then driven me right back there again days later to pick up the car I had to leave there, they've come to lie in bed with me for company when I can't get up, left surprises and flowers (just because it's Tuesday:) on my doorstep, brought me coffee;) and just shown such an incredible amount of love and compassion. I can't even express in words what it has meant to me and continues to mean. I don't know what I've ever done to deserve it and I will never be able to repay so much kindness, at least physically, but I hope they know that no matter how small or huge a kindness or favor, literally saving me when I'm stuck or too sick to function or dropping off a coffee, I do not take any of it for granted, I realize and notice every single thing you all do for me, including even just sincerely asking about and listening to how I'm doing, and I love you for it. Truly. You've opened my mind and heart to what it means to have true friends and taught me that's it's ok to rely on people.


Small things, tiny things, huge things, medium things and things you may not even think about or don't even make a dent in your world may be the world to someone that day or in that moment. Trust me. Kindness is never wasted no matter the size.

Sinus infection=8 (seriously), Kim+Drs= 0

Well well well sinus infection....We underestimated you didn't we?

So, 4.5 weeks and counting and this head of mine is still threatening to explode and/or just float away. The rest of my body feels as though it just won't work and all it wants to do is sleep. You know, the standard feeling sick routine. But it just won't end!

The score:
1. 7 day course of antibiotics
FAIL
2. Postponement of immunosuppressant infusion #1
3. Addition of Sudafed, Flonase, Mucinex, saline spray.
4. Postponement of immunosuppressant #2
5. Addition of broad spectrum antibiotic-6 week course! 8 days in...
6. Visit to rheumatologist for a discussion about changing the immunosuppressant I love so dearly and that actually make me feel better.
7. Postponement of immunosuppressant (#3) until sinus infection symptoms are gone, then we will discuss the new medication (this is my 5th sinus infection in 19 months apparently, and my Drs don't like that much)
8. Now just yesterday a referral for a head CT scan and a referral to the head and neck surgery Department, which is exactly what we've been trying to avoid all this time...

Status:
Still sleeping daily at 7pm until 7am. Still feel like I'm floating and that my head will explode if I move it quickly, and bad things happen if I open my eyes all the way. I have a constant head and neck ache and zero appetite.

But, I'll get you sinus infection if it's the last thing I do!

Welcome to 4am....

I've suffered from insomnia off and on for a lot of my adult life, with chronic pain you can imagine the insomnia doesn't improve.... I'm not unique in my insomnia of course. It's not unique to chronic pain patients, it sucks equally for everyone!

My beautiful, very large, inordinately strong 3.5 yr old beautiful boy decided to "hug" mommy today in a full speed side low tackle that would've made my man Patrick Willis proud.....

 So, while he led with the shoulder to my hip in a respectable hit, it hurt beyond what I would have liked to have felt. Unfortunately, I saw it coming and braced sending my hips to the left while my spine snapped to the right in an unnatural and ugly sounding and feeling snap. I was put on IR for the remainder of the night in my bedroom....
That's reason #1 for tonight's 4am internet perusal and book/music listening. Some heinous back pain that's making it really tough to get comfortable.
Reason #2 is this stupid medication regimine they have me on for the sinus infection. No more Sudafed at 6pm for me thank you very much!

Add to that a propensity toward insomnia anyway, a very loud snoring husband and I'm laying on the couch almost done redecorating my house on Pinterest. 

Everyone's going to be really happy to see her tomorrow......

Sinus infection=1, Kim + Drs= 0

Well, the Drs appt went very well. I'll start with the good news.
I had to change primary Drs because mine left, so this was my first experience in person with Dr R. He was thorough, caring and gave me a plan in specific medical steps. He also is doing everything he can to keep me out of a CT machine since I have had way over my radiation limit for the year due to the surgeries, and he is trying to avoid referring me to ear, nose and throat because he said they will want to look at it surgically. I said a polite thanks but hell no to that one. So, he went to the ENT depts site on his computer, found out their treatment protocols and told me we could just do all of those and hopefully be done with it. I think he's a keeper!!







However, sadly, despite the intense regime of antibiotics twice a day, Flonase 2x a day, saline spray 4x a day, Sudafed 2x a day and Mucinex once a day I haven't seen much improvement.

To put it simply I feel like my eyeballs will one flying out of my head from the pressure and I want to rip the teeth out of the right side of my mouth they hurt so bad. I can't stop pushing on my cheekbones even tho it doesn't help. Y'all know exactly what I'm talking about if you've ever had a sinus infection. It's no worse than a traditional one, just never ending! Three solid weeks now.

If this doesn't work by this weekend I'll need broad spectrum antibiotics (think kill EVERYTHING, and the kind they use for antibiotic resistant infections) for 6 wks, but I asked him if I could wait a few days in between so I could try to avoid those if at all possible. Bad news there.

So, that's where we stand now. More good news is the PT for my back seems to be helping! It's hard to tell right now because, in a weird twist of events, whenever I'm "sick" with an infection of some sort (which, believe or not doesn't happen often besides these sinus ones) my body feels better. My immune system is working on attacking and fighting this infection instead of attacking and eating away at my spine. So.....