The Current Plan

I haven't been talking about RA much lately. The Cymbalta I've been on has really cut down my joint pain (and helped my mood to boot!) My symptoms had seriously decreased till the last few days. For me stress = flare. Fortunately this time it's a small one. I know what to do. Wear my compression gloves and take my foot off the gas of productivity and rest rest rest. That's the plan for today.

My Rheumatologist isn't treating my RA until neurology is done with me and I think that's going to be a while. He's not sure if my sudden muscle weakness and muscle fatigue is connected at all to my autoimmune system, or if it's something neurological. So this means I'm in some kind of strange limbo with my neurology team running endless tests to try and find a cause. So far, nada. Although they did find my brain tumor, so I feel a bit rude nagging them.

Here's where I'm at so far in all this "chronic illness" health mess that is now my life:

• Next Tuesday - My first full brain MRI post-tumor removal
• Next Thursday - My first electric wheelchair is coming
• Monday November 5th - My first day back at work
• Wednesday November 7th - My 2nd follow up with my neurosurgeon (my husband also leaves for a 3 day business trip. SADNESS!!!)
• Wednesday November 14th - The long awaited EMG on my muscles with neurology
• Wednesday November 21st - I meet with the head of neurology in hopes he has some new ideas

Did you catch that I also work? And apparently I'm supposed to do that AND all these appointments every... single... week... Can you read my frustration between the lines?

Honestly I wanted to quit after the EMG and be done with neurology. But my husband made a very good point. He said "This isn't a wrong order at Carl's Jr that you just shrug and take anyway. It's a major health problem and we need to do everything we can to get to the bottom of it." He's totally right (of course.) I'm just exhausted with all this and I don't know how long I'm supposed to keep on going with these endless tests and appointments? 

When you struggle with chronic illness, any illness, it's impossible not to have it just take over your life. My life has changed completely from what is was even just 9 months ago. I have to constantly gage my energy, spoons and ability and that alone is exhausting. Add my job and then, you know, important relationships and I'm spread very thin. As Bilbo Baggins said in the Fellowship of the Rings "I'm tired Gandalf, like butter scraped over too much bread." Word Bilbo. All the feels!

Problem Solving

The left side of my head where I had brain surgery is still puffy, even though this Thursday will mark 1 month since my operation to remove my tumor. I'm not sure why I thought having 3 plates and 10 screws in my head would NOT make it puffy for a very long time, but I did. I blame the whole "impatience" issue I struggle with.

I bought some beautiful new glasses very soon after my surgery, but I haven't been able to wear them because of the swelling on my head. The eye tech loosened the left side as much as she could and I thought that would be good enough, but each time I tried to wear them it was painful and I was left with a large dent right where my plates are. Not good!

Today I swore I'd solve that problem. I love my new glasses, I'm tired of wearing contacts all the time and I want to wear them. I was looking on Amazon for some magical solution when it occurred to me. "All I need is some kind of adhesive soft pad for the inside. FURNITURE PADS! I think that might work." So here's what I did:

1) Get out my furniture pads, tape (in case I need it. I didn't.) and small sharp scissors. Oh! and my glasses of course!

2) Cut a long pad to fit the length of the side just to the part that curves along your ear.

3) Place it on the side of the glasses, then measure and cut a thinner piece to follow the curve of the ear (a thick piece won't curve as well.)

4) Put the new thin piece carefully on the ear curve. Press both pieces down firmly to adhere.

Now I'm ready to see!

You can barely see the pad here. But that's ok!

YAY! Now I just hope they don't leave a dent. I'll try them tomorrow and see how it goes. Hopefully that's another problem solved. 

10/25 UPDATE:

Well, so... that did work and it didn't. Yes it made my glasses not hurt and it did provide padding, but apparently even that is just too much yet. It made my head really swollen the next day where I had surgery. I think the problem is that where the arm of the glasses go is RIGHT where I was cut into and where my plates are. So for now I'm back to contacts. -sigh- 

"Don't Over Do It!"

I told my husband yesterday that I have 2 modes, High and off. This is very true. I either try to be out in the garden working up a sweat, cleaning my house, doing loads and loads of laundry, or I'm asleep. I've been enjoying naps daily since my surgery. I mean, I've always enjoyed naps, but these are NAPS. Usually about 3 hours long. And believe it or not I sleep just fine at night after napping for 3 hours. My body evidently requires lots of rest right now. However I'm not great at always listening to what my body wants.

I'm ready for my hair to grow back.

I'm not super patient!

On the up-side, my garden is looking fantastic! My muscles are still a big problem, but I find that as long as I don't walk much and lean on my gardening tools a lot, I can get quite a bit done! That's a big improvement over what I was able to do before. Although, I was also working long days before so I'm not sure how long I can sustain this level of HGTV domesticity. I'll just enjoy it while I can.

I'm a sucker for a wattle fence.

I really am trying to nurture myself too. I read recently about how taking a collagen supplement can help people with RA. It is said to reduce joint pain (and also is good for your skin, hair and nails.) So today is day 3 of me trying that out. 

It's very... ahhh... thick and foamy. Let's just say I drink it fast. So far I'm mixing it with chocolate milk which I think is as good as it's going to get. I'll let you know if I see any results. I'm also taking 500mg of Biotin to help my hair grow fast. And eating a lot of eggs. I've never taken Biotin before, but I know it's supposed to be helpful for your hair, skin and nails too. All things I can use while healing up all my scars from the brain surgery. 

In the meantime, I'm trying to find my balance and listen more gently and closely to my body and what it needs. All I can do it try.

3 Weeks Post-Brain Tumor

It's been 3 weeks today since I had brain surgery to remove my benign Mengionoma. Something strange started happening last night. I started to feel angry. Here's some reasons that were running through my head:

• 9 month aggressive treatment for Latent Tuberculosis 3 years ago that was like a bomb setting off a series of autoimmune issues
• Chronic joint pain and swelling 
• Crippling fatigue
• I had a fricken brain tumor
• Whent through brain surgery
• Now I have 3 plates and 10 screws in my head
• Mystery muscle weakness that no one still seems to know why or what it is
• I now own 2 wheelchairs and a walker at age 45
• I need to use a handicapped parking plate
• What I can and can't do has changed dramatically over the last 8 months
• I have constant pain
• There are tons of things I want to do but just can't
• I'm worried I'm going to lose my job because of all the time off and constant doctors appointments
• I want to be able to travel like I used to
• I'm trying to not let my health issues take over my life
• I'm exhausted from being constantly optimistic
• I'm tired of spending money on all of these problems
• I feel like my body has completely failed me

I'm usually a very positive, optimistic person. I'm a problem solver by nature. When I get down, I don't stay down for long. But today is a "down day." I'm lucky that I'm meeting a friend for coffee later. I'll lean a bit on her let her cheer me.

I think this was all triggered surprisingly by my new wheelchair. I finally got the approval, it has been ordered and will be delivered to me November 1st. Yes, I want and need this chair, but I think it also triggered this cascade of anger in me that took me by surprise.

"Big Blue" - My new electric chair

Still not having a real answer about why my muscles suddenly started to give out back in March is horrible. The best I can figure out is it's some kind of "Inflammatory Myopathy." But that's just my personal guess (but it's more than what my neurologist has come up with.) All I know is I can do about 25% of what I used to physically be able to do and no one seems to know why.

My husband and I were hoping the cause was the brain tumor. When we first found out about it my neurologist even told us that was the cause. But quickly other medical professionals disagreed and said it was unlikely to improve anything muscular. However, before surgery my right hand and right side were much weaker than my left. Now they feel about the same. Who knows how or why? So my husband and I are still holding out hope that things will improve on their own.

Hope. That's so important when you're struggling with a chronic illness. I find when I lose hope it's necessary to connect with others who can hold onto it for me. My husband is fantastic about that and he never seems to lose hope. 

I found this lovely quote I wrote down a year ago from my Nana. She told me this over the phone and it's a wonderful reminder that as long as you are loved, there is always hope and comfort. It's a good reminder that I needed today. It's also ok to remember that I'm allowed to be angry. I've been through a lot! And I know the anger won't last long.

Day 13 - Staples Out!

I had my first post-op appointment on Wednesday and it went super well. I feel I completely lucked out with the level of care I was given by my neurosurgeon Dr. Shahlaie. As fast as this all happened he was completely reassuring, empathetic and enormously talented. The whole procedure was minimally invasive (what he specializes in) and I feel like I won the brain tumor jackpot (if that makes any sense.)

Me & Dr. Shahlaie at my appointment.

I told him I'd remind everyone that I shaved my own head so he wouldn't get blamed.

I learned the there's a very small chance the tumor will return, but he got the whole thing and everything is healing really well. I also got some super cool pictures of my scans and was able to compare pre-surgery MRI to post-surgery CAT scan (the night after surgery.)

But first! Here I am with no more staples! YAY! I can report that it didn't really hurt coming out either. More like a little pinch. Thank Goodness! I was a bit scared about it.

14 staples gone!

Now here's the MRI of my tumor on the left and the CAT scan without it on the right just after surgery. It's amazing how fast my brain tissue was taking the space back up that the tumor was filling. The black lines on the CAT scan are silicone mesh that they inserted between my tissue and skull. That will stay.

The blue circle here shows the part of the skull that was removed to access the tumor.
You can also see the staples to the right side of it (that are now gone.) 

And here we have what I consider to be the most interesting picture. It's a CAT scan post surgery showing my 3 plates and 10 screws. To make it easier to see I color coded it.

• Blue is the piece of skull that was removed and put back. 
• Red is the 3 plates. 2 are straight bars and 1 is a round one. All are titanium
• Yellow is the 10 titanium screws keeping everything in place.  

You can see the staples here too, but that's just in the skin.

All the other hardware will be with me for life now.

My husband calls it "jewelry for my head." Hahah!

Here's what the round titanium piece looks like not in my head. I think it's really interesting looking!

Here's the scan without my markups. It's a bit harder to understand, but easier to see all the details.

I got cleared for lifting 20lbs and doing moderate exercise (as long as my muscles cooperate of course.) I'm trying to be more active and get some exercise. My father-in-law gave me the fantastic gift of clearing out my garden for me, so I'm now trying to beautify it and give it even more love. So far it's hard for me not to do too much, but I'm trying!

My amazing father-in-law going to town on my mess of a garden.

What a great gift!

Hats Hats Hats

MR. SMEDS AND MR. SPATS

by Shel Silverstein 

Mr. Spats

Had twenty-one hats,

And none of them were the same.

And Mr. Smeds

Had twenty-one heads

And only one hat to his name.

Now, when Mr. Smeds

Met Mr. Spats,

They talked of the

Buying and selling of hats.

And Mr. Spats

Bought Mr. Smeds' hat!

Did you ever hear anything

Crazier than that?

10 Days Post-Brain Tumor

Today is day 10 from my brain surgery. I confess I'm terribly impatient, horrid at resting and have not been taking it easy at all. Granted this was easier to do while I was still heavily medicated, but my lack of "going slow" has resulted in some swelling and my neurosurgeon telling me to "seriously stop straining." Message received. Rest more, go slow, go out less... chill. Got it. 

The only thing I regret is being out in our town walking a bit too much while pushing Meg (my rollator.) I'm sure I was straining too much getting her across the cracks and I won't be doing that again for a while. But I have no regrets about the other fun stuff I crammed (carefully) into my week.

Like...

Shopping for new glasses with my honey. I adore the pair I ended up with. My other pair were old and met their fate at the hospital. I'm waiting for the side swelling to go down before I really enjoy them, but I'm thrilled to have found such a fun pair.

I had a fun time getting a pedicure with my auntie. Should I have also shopped around our town and gone out to lunch? Most likely not. I blame the meds. I was feeling good. But my toes are cute and I enjoyed myself.

Yeah, then I found this beauty at a local shop. It called to me from the case. It's a hand-cut Tibetan ruby, natural, in silver. It wanted to go home with me and who am I to deny fate. I love how all rubies have imperfections in them (real ones do at least.) They are supposed to provide healing and strength too.

I also got some claws to go with my ruby while spending time with my sisters-in-law and mother-in-law. Again, being out too long, walking too much and thinking I'm totally healthy and fine just days after brain surgery. I might have to check in with my surgeon to make sure he really tightened those head screws? I might have a few loose.

But isn't that ring stunning? And my dog is thrilled with the long claw scratches.

And here's the incision. It's healing really nicely. I'm still so shocked that it's so small. I expected to have a whole zipper head. So no more running around. I promise to take it a bit slower. Let my body heal and recover. The staples will come out in 3 days and I'm hoping to have some cool pictures from my neurosurgeon of the tumor!

There and back again - Brain Surgery

Tah Dah!!! All finished. The meningioma has been successfully removed. 3 days in the hospital and 8 hours later that little invasive sucker is gone. It took longer than my surgeon thought it would, but i'm just thrilled to have it all finished.

Here's a bit of a play-by-play and hopefully some useful information for you.

Tuesday the 26th of September, day before brain surgery. This was my long awaited 3 month appointment with neurology. We waited almost 2 hours and it wasn't all that helpful. I was annoyed, my husband was patient. They want to test me for Myathenia Gravis as a potential cause for my muscle weakness, even though I don't have any eye drooping. Whatever. I was over it and ready to get the tumor gone.

I had also had my hair cut pretty short on the sides for surgery.

Thursday September 27th. We left for the hospital at 4:30AM. Not drinking anything before surgery sucks. I was thirsty and my veins (for once in my life) wouldn't tap at all. But everyone did their best to make me comfy and prepare me for the big surgery. I wasn't nervous till they wheeled me into the operating room. There were a lot of people in a very big space. Brain surgery is serious and I felt that. It took them 6 tries of a medication to "help me relax." Not much seemed to be going as it should have been and that made me even more nervous. But then came the gas and I was OUT! It was wonderful. I didn't feel a thing and I don't remember a thing.

Trusting my doctors and all ready for surgery!

This was around 7:30AM

Recovering from surgery I think around 4PM? I'm not positive.

The water was divine. A gift from the Gods!

I was feeling happy to be all done. My husband said my head looked like an Asian Pear all wrapped up. Turned out I had a latex allergy that caused some issues. And my veins still weren't cooperating. But the tumor was out! YAY!

Feeling a little better and the nurses took some of the pressure off my forehead. A nice little blister was starting to form. Darn it!

I spent the first night and day in ICU. Each nurse had 2 patients and I had my own room. I was on a "soft diet" which was good because the left side of my jaw was sore from the muscle needing to be pulled back. I also have 14 staples around my ear. Not bad at all! We were told it would be more and go all the way up my head. So that was a lucky surprise. Everyone was taking good care of me and giving me constant medication. I had 3 ports, 2 in each hand and 1 in my foot. My veins were not cooperating at all and that was a bit of a problem. I also opened an artery when I tried to brush my teeth the first night. Fortunately nurses don't mind things like a sink full of blood. 

I had a lot of love and visitors. My auntie bought me this super soft pink stuffed bear. She know's I'm a sucker for stuffed animals. I also brought this soft blanket to the hospital. Something I HIGHLY recommend anyone do whose having surgery!

Friday September 28th I was moved to another room that I shared with a roommate. Luckily I had the bed by the window. She had... some major problems. I don't know what, but I was pretty yucked out when she pooped the bed and gassed out the entire room. I literally had to run out into the hall and wait for the poor nurses to clean it all up and spray the room down. Then of course they felt bad for me to have to be out of bed. It was just a bad situation. But the nurses were great and I was well taken care of. I even had more family and visitors come to check on me. Including my son who was there much longer than he thought he'd be. Hahaha!

Hospitals are so exciting.

By now I was able to take the head wrap off and almost all of the ports out. Yippeee!!! My sister-in-law brought me this beautiful soft hat. It was much better than the Asian Pear wrapper.

Happy, but ready to go home.

Honestly the time is going really fast. Monday, October 1st was our 24th wedding Anniversary but time is blending right now. I'm still on a  LOT of medication. Pain pills, oxy, tylenol, anti-seizure, steroids, stool softner, my regular Lyrica, Cymbalta and Synthroid. It's a lot to keep track of and my husband is doing a great job!

Yesterday at 5AM I decided to shave my head. I had a very good reason. The latex wrap caused a lot of blisters and scabs and I just wanted a healthy, healed scalp. I was awake and it was raining outside for the first time in ages. I thought "I'm going to lovingly, carefully shave my head down to a 9, then rub it in coconut oil and take a nice warm shower." It was the best thing I could have done. Unfortunately my husband woke up to find me naked eating grapes, with a shower cap over my dome covered in coconut oil. I'm pretty sure he was 100% convinced I'd lost it completely. Once I explained, he got it. The hard part of living with an impulsive wife. 

My daily organic, unrefined coconut oil rub that I leave on for 30-40min, then shampoo off with all natural baby shampoo.

I'm doing well, though my bruises aren't healing as fast as I'd hoped. I'm feeling shockingly social, which is new for me. 

So here's some tips I have for anyone going through a major surgery. Just things I've learned and am coping with:

1. Be tremendously gentle with yourself. Seriously! Treat yourself like an infant. Use soft wash cloths, soft blankets, soft hats... the key here is soft and gentle.
2. Let people help you. Anyone and everyone who wants to help you, visit you, be there for you, go with it.
3. If you're tired, then rest.
4. If you have some energy, then get some fresh air and explore. Have fun! Go slow and take it easy, but no need to just stay home like a zombie full of head staples if you aren't in the mood.
5. Listen to your body. If something is wrong, let people know. My medication wasn't helping for a long time at the hospital and it took a while to get it right. I also had to remind some people about it being medication time. These things are important and I didn't feel bad being "Demanding" or "Needy." You're important.
6. Bubble bath, epsom salts, coconut oil, Polysporen, baby shampoo and other soothing bathing items are your best friend. Use them a lot. So are disposable plastic shower caps. Perfect for the scalp treatments I've been doing.
7. Don't care about your hair. It grows. It's not a big deal. Your scalp health is the most important.
8. Go crazy with hats and wigs if you want. Have fun with it. 
9. Don't care about what you eat. Just care about if and when you poop. If you want chocolate ice cream, then have some!
10. Let everyone in your life love you as much as they can.