The Immune system of a hot mess

Every 6 weeks I go into the redwood city Kaiser chemotherapy center for a 3-4 hour long infusion. Infusion simply means they have to put the medication I need in very slowly through an IV similar to chemo. 
The medication they infuse is called remicade, and it is an immunosuppressant (the technical name is TNF- blocker). The name sort of gives it away, but what this does is destroy a huge part of my immune system
Ankylosing spondylitis is an autoimmune disease meaning that my own immune system has gone whacky and attacks my healthy body tissue. Mainly the joints in my spine. 

Part of the fun (not fun at all) of doing immunosuppressant infusion treatments is that they don't just destroy the hyper active immune system, they destroy the entire immune system. This leaves me "immunocompromised". You have probably heard that term in various places, generally associated with cancer or HIV/AIDS patients. This means I have a high risk of infection and illness. And if I do get sick my body doesn't have the forces to fight it off very well so it tends to get worse than it should and lasts longer. This treatment also carries a higher risk of cancer. So, needless to say my Drs keep a closer eye on any illness I may acquire than they would for a "typical" patient.

That brings me to today! B and I are off to the drs today for yet another extremely painful sinus infection. This is #5 in 18 months and is caused by the medication. Because there have been so many now, rather than my usual antibiotics and Flonase (steroid nose spray) I get to have a CT scan of my head (hopefully not today since I have no one to watch little B.....) And a referral to an ear, nose and throat specialist! Yay!
So many health problems, so little time.... I'll keep you posted on the findings.

My biggest fear...

Well, OK not my biggest fear. Those have to do with my kids reaction to all of this, but we'll get to that later maybe. 

But, ONE of my biggest fears in all of this is the perception. I know, I know everyone will say "who cares about what other people think?" But put yourself in my shoes for a second.

I don't like to talk about my health problems unless I trust the person and we are friends or close acquaintances, or if our children are, because then I feel you deserve to know. Part of the reason I am as open about all of it as I am is the perception. I dont want to be perceived as lazy or flaky. Sometimes I am flaky, but it is because of physical limitations. I am NOT a flaky person by nature and I'm definitely not lazy (sometimes I think my Drs wish I was a little....😜) So, I try to explain myself as simply as possible when it happens, not as an excuse but as a valid reason and explanation. This is because of perception. Not everyone I have trusted with this information has been a wise choice, but since I only tell people for specific reasons I can hardly regret that.

My husband once said to me "your entire existence is focusing on not being a burden to anyone", and I've learned through all of this that that is true. I do not want to be a burden. I do not want to be seen as "constantly complaining" or the horror of all horrors- a hypochondriac- gasp! I don't want to be the person people roll their eyes at and wonder what's wrong with them now. I don't want to be the person who isn't invited because I may physically not be able to do something or will complain about it being difficult. 

In the beginning, my focus was so laser pointed at these perceptions and the independence fully ingrained in my personality that it bordered on denial. 

Then....It got to the point where I had no choice to not only accept help but to actually ask for it. How could I possibly do this when the first 35+ years of my life had been focused on never asking anyone for help, always trying to be the person who does the helping and never ever burdening anyone!? This was huge for me, and also my good friend the psychologist's belief that that is what I need to learn from all of this..... Interesting theory. 

So, have I learned that asking for help from friends doesn't make me a burden? I'd have to say no, but that I'm closer than I was. 

Have I gotten over my fear of other people's perceptions of my actions due to these health issues that limit me so severely? I'd have to say not really, but that I've had to let it go mostly because I just don't have the energy.

Do I still try to hold it all in so no one sees me as complaining or weak or a hypochondriac? You betcha! 

It may sound like I've learned nothing, but I have. I've been humbled by support and offers of help and I've developed a group of close friends and family who give me no choice but to accept their help and love and support, and I actually listen. Most of the time... 

So even though that may not sound like a personal victory, for someone like me it really is. There's still some work to be done though obviously. 

Tunnels and light

As many of you know I use quotes to help me get through. Almost every necklace, bracelet, coffee cup, screensaver or internal motto comes from a quote and has special meaning.

This time I'm focusing on the tunnel. I know this is a long tunnel. We knew before it started that it would be. But, that doesn't change the fact that one day I do feel like there's a light at the end of the tunnel and the next day I realize it was actually a freight train.

So, what's going on as of Feb 20, 2017?

I began outpatient rehab for the neuromuscular issues, as well as further rehab for my gait and balance. Currently, I cannot walk straight (think toddler-esque) and cannot close my eyes while standing or walking. If I do, I will either begin to fall over or run into a wall. Feel free to giggle. It's quite funny to watch.
It's not like vertigo or dizziness, although some of the Neuro exercises do make me dizzy when I do them. It's not the inner ear causing this imbalance (which is what causes vertigo or most cases of dizziness), it is the confusion between my brain and my muscles, so if my brain doesn't have visual confirmation of the way I'm moving it doesn't know what to tell my muscles to do. So, eyes closed= muscles that are working my legs getting confused and causing me to veer off into a wall or just fall to the side.

So, this is outpatient rehab's main focus.

The other main focus is strengthening my muscles and retraining them to walk correctly- to simply walk down a hallway taking normal size steps, feet forward, one in front of the other. Believe it or not, I can't do that. Seven years of pain has taught my brain to change things up so that when I move the pain is lessened, but the way it told me to move is incorrect and causes pain in other areas. We need to work on the brain to tell them the right thing, but also the muscles to function in that way. Doesn't do any good if we get the brain saying the right thing to the muscles and the muscles saying "ummm no thanks, we like doing it our way."

The first day in outpatient rehab was incredibly painful and landed me in bed the rest of that day and some of the next. For those of you who have never done any sort of PT or rehab, the first day is mostly trying to recreate your worst pain so the PT can see exactly what's going on so they know how to fix it. It's a lot of "does this hurt?" And you saying "yes!!". Since then I've been able to do the stretching exercises he assigned, but the strengthening and Neuro exercises are a bit more challenging due to pain. He said through email that we will work on that next week when I go in again. Meanwhile, I still do as much as I can of the strengthening exercises I have been doing.

It's all very complicated medically, but what it means in every day practical life is that I still need a roller walker or wheelchair when going out and walking very far, and there are still many days where simply getting out of bed is challenging and painful. Taking care of a 50lb three year also makes daily life challenging.
Now, the pain is never going to be gone. This is my normal. I have an autoimmune disease that causes pain and immobility. There will be days I cannot get out of bed for the rest of my life. But we CAN get my body to function as well as it can with as minimal amount of pain as we can get to. That's the goal. And we're getting there. It's just a really long tunnel.