Setbacks

I’m feeling defeated.  It’s temporary.  I never stay bummed for too long.  And I only seem to post when I’m bummed – it’s my way of purging.  It’s not a cry for sympathy or prayers or validation, just my way to get it out and move on with life.

A few days ago, my husband and I made the four hour trip south to Santa Rosa, where I’d be getting 7 MRIs.  The normal 6 for my MS – brain, cervical and thoracic, with and without contrast.  And then one for my shoulder, which has been “frozen” for seven months and only getting worse.

I made hotel reservations for two nights.  I made arrangements for friends to care for our cats, which require two feedings a day (we can’t just leave out a bowl of food, they have special diet requirements and one needs medication).  I went armed with lorazepam (Ativan), which is a sedative for anxiety, since last year I got a little panicked and claustrophobic with the 6 MS MRIs, though I got through them all last year.  I brought gabapentin (which sometimes helps me with pain), Tylenol, marijuana cookies, and BioFreeze (a mentholated spray that helps relieve pain – like IcyHot, only better).

I was mentally prepared for this trip!  And it wasn’t going to be all business.  We made plans to have lunch with some friends and meet their new baby.  We made plans to have dinner with the brother-in-law and another friend.  We were going to do a little shopping.  It was going to be a fun trip, outside of all the MRIs.

And it was!  Until the first day of the MRIs.  My neurologist told me to take 1 lorazepam (1mg) about an hour before going into the machine.  If it didn’t work, take a second one an hour later.  So I took my 1 an hour before.  The first day, they were going to do my shoulder and then my brain, with and without contrast.  (That means they do the MRI scan.  Then they pull me out of the tube, inject some dye/contrast into me intravenously, then shove me back in and do a second scan.)

If you haven’t had an MRI, let me explain something.  They basically shove you into a small, plastic tube.  I imagine for people of a smaller build, it might be a little easier.  I, however, am a large woman.  I’m 5’10 and I have shoulders broader than most linebackers.  When they shove me into the machine, it squeezes me completely – my hands get pressed to my sides, my shoulders are being squished, and there is absolutely no room for movement.  I might be able to move my hands about 3-4″, but that’s it.  Aside from the claustrophobic issues, the problem I was most worried about is that with my frozen shoulder, I can’t put my arm completely against my side.  That position is excruciating.  But that’s exactly what they wanted me to do.

So… the women working with me tried to get me comfortable, but I have to say, they didn’t seem to care all that much, either.  I felt like they were only partially listening to what I was telling them.  They were very no-nonsense and kind of dismissed my pain with a, “Well, there’s nothing else I can do for you, honey.  You’re just going to have to try to bear it.”

So that’s what I did.  They slid me in and the pain only increased with every passing moment.  I think the shoulder MRI might have been a total of 20 minutes.  But with every second, the pain was growing. It felt like a branding iron being shoved into my shoulder, and a hammer smashing my elbow.  When your body thinks that moving your limbs just a little will relieve your pain, it’s incredibly hard to fight that instinct.  But I got through it.  When they pulled me out, the tears had begun rolling down my cheek.

I told them I was in a lot of pain, but now we were going to do the brain, so I could put my left arm in a different position than the way I had it for the shoulder MRI.  Whew!  It still didn’t feel quite comfortable.  The women still didn’t seem to care.  And back into the tube I went.  This time, the tears were coming harder, but I made it through the imaging.  I was pulled out, unable to wipe my tears because they didn’t want me to move positions at all.  In fact, as I moved my arm to relieve the pain, they kept yelling at me to please don’t move, I’m going to mess up the next imaging.  But I had to move it.  There was no way I couldn’t.  They got the IV in my arm, the dye went in, I just laid there crying, and told them to put me back in, let’s keep going.

I was sobbing halfway through.  Snot was running down my face.  They told me there were only two more scans left… 3 minutes and 4 minutes… but I couldn’t do it.  I was squeezing the little emergency ball, asking them to please get me out, I was in too much pain.  I couldn’t even sit up by myself because it required two arms and my left one was in so much pain, it was completely useless.  So when the tech told me I could get up, and I stretched my hand out for her help, she scoffed and said I couldn’t pull on her.  (The other tech had helped me up between the shoulder and the brain MRI).  I was like, “Ok… but I can’t get up on my own.”  “Well let me get behind you and push you, then.”  Which worked, but jesus christ!  Here I am sobbing in pain and shame and she’s totally indifferent.  “Should I stop at the front desk?  Is there something I need to do?”  “No.  You can go home.”

So I found my husband waiting for me, looking shocked and concerned as I came out sooner than he expected, crying.  I explained I was in a lot of pain and couldn’t do it and let’s just get out of here.  So we did.

I immediately called my neurologist’s office to explain what happened and asked them if they would be able to prescribe some sort of heavy pain-reliever for me so I could try to get through the next day.  Well, the fact that I was 4 hours away didn’t seem to register with the woman who took the message, so the nurse called back and said they had a prescription waiting for me at the front desk.  Once I explained to the nurse that I was four hours away, she explained to me that there was no way they could call in the heavy meds to a pharmacy down there, because legally, the patient has to have the prescription in-hand.  (It was that way for the lorazepam.)  Their only suggestion was to go to Urgent Care where I was and ask them for pain relief.  Right… because I’m just going to walk in there and say, “I’m not from around here and you don’t know my medical history, but I have MS and am getting MRIs and in pain, so can you give me the good stuff?”  And they’ll just write out a prescription, right?  I was not going to sit all day in Urgent Care’s waiting room.

So I went back the next morning better prepared.  I’d taken 1200mg of gabapentin.  I was going to take 2 lorazepams.  I took 2 Tylenol.  And I took my BioFreeze and sprayed the hell out of my arm to numb it.

None of it made a difference.  I didn’t even make it through the first MRI before I was crying from the pain and asked to be pulled out.

So the only imaging they got was of my shoulder.  Which I guess is the one I’d rather they got so maybe they can figure out what’s going on with it and fix it!  I don’t know what my neurologist is going to have me do.  Maybe I could find a place within a 5 hour drive that has an open MRI machine, but that would mean another trip, another hotel stay, more time off work for my husband who has a very difficult time taking any time off.  I don’t know if they can sedate me completely somehow and have me do the imaging.  (I can’t imagine waking up early from sedation stuffed in an MRI tube, that’s the stuff of my nightmares!)

And then to add insult to injury, the first night we were home, a spider decided to munch on my hand.  I woke up with my middle and index fingers so swollen, I couldn’t bend them and they were way hot and very red.  It was like someone had wrapped tape around the knuckles.  Total cartoon sausage fingers.  I had no idea what was even going on because I couldn’t see the bites with the swelling and discolouring and they hadn’t started itching yet.  I thought maybe it was some sort of allergic reaction to the contrast they’d injected me with.  But after some Benadryl, the swelling went down a little and the bites began to itch.  Even today, they’re still slightly swollen, hot, and very itchy.  So I’m slathering them with Cortizone ointment.

And I woke up today feeling “off”.  Like I’m drugged, but I haven’t taken any drugs.  So I’m chalking it up to having an MSy day.

And all of this is why I’m feeling defeated.  Like I said… I know I feel better in a couple of days.  But damn!  Could I catch a break for a day or two now?

Whew.  And that is my bitchfest for the day.

Support

I joined a Multiple Sclerosis Support group on Facebook a few weeks ago.  I thought it might do me good – I’m not a very social person so while I’ve considered going to a local support group for the last two years, I clearly haven’t done it.  I think it’s just because I generally don’t like socializing, even though I know the support would be beneficial.

Which is what led me to seek support out online.  I thought… why not?  At first, it was great to just read other people’s posts about how they’re having a rare good day and I could relate, ya know?  Yay, I cooked dinner today!  Go me!  But as I’ve continued to read other posts, it’s really become sad.  Depressing.  Hard to read post after post after post of people around the world suffering from this stupid disease, just looking for someone to tell them they understand and it’s going to be okay.

Reading these posts also scares me a little.  I haven’t had a real bad attack, at least I don’t think mine was that bad.  Even my first one that had me in the ER and then receiving the MS diagnosis wasn’t super terrible.  I was fatigued beyond belief, dizzy, eyes couldn’t focus, I couldn’t walk by myself… but I could still walk.  I could still fill out most of the hospital forms.  I’m reading other people’s posts about them just falling down because their legs went numb.  I have to imagine this is going to happen to me at some point.  But it sounds so scary!  I was afraid that was going to happen about a year before my diagnosis when my legs went completely numb.  I could still walk (weirdly), but my leg felt floppy.  Like it wasn’t mine, like it was possessed.  Still, no falling!  What am I going to do when that happens?

Other posts really made me realize how much support I have in my life and how I’m seriously, seriously grateful for everyone’s support and understanding!

The posts that are really bothering me a lot are the ones where people are complaining about the lack of support from family.  One woman wrote how she was going through a terrible divorce at the same time she’s dealing with this new MS diagnosis.  She’d had massive fatigue for months before her diagnosis and her husband just thought she was lazy which ultimately led to their divorce.  That broke my heart.

Another young woman posted about how her mother has been by her side during her whole diagnosis – going to the hospital, going to all the neurologist appointments.  And yet her mother still keeps telling her she’s not trying hard enough, that she’s lazy, that she should be doing more.

I joined the support group because I’ve been going through a flare-up(?) for two weeks.  I did my yearly jewelry booth at the Pride fest, and it was a nine hour day that wiped me out.  I knew it would.  I did it last year.  I knew it would be worth it (and it was!), but this year it hit me harder than last year.  I’m not bouncing back as quickly.  It’s been like having the flu for two weeks – weak, tired, MSy (which is my term for bumping into doorways, dropping everything, stubbing toes – “I’m having a real MSy day.” )

When my husband comes home from a hard, stressful day of work, he asks me how my day was and I tell him I did nothing.  I slept for 2 hours in the morning an then I slept for 3 hours in the afternoon.  Otherwise I sat in a recliner and watched TV and Facebooked.  When I tell him this, he gives me a hug and a kiss and he tells me he’s sorry I’m feeling so shitty.  And then he goes and makes dinner.  That man is amazing an I love him so much.  I can’t imagine me telling him how my day was and him being scathing… asking me why I haven’t done the dishes in 3 days or vacuumed or done anything.  How can one do that to their spouse, knowing that they have a chronic brain disease?!

My parents, my siblings, my in-laws, my very few friends that I have… they all understand.  When I tell my grandmother I’m sorry, but I can’t talk to her right now, I’m too tired, can I call her in a few days when I feel better, she says no problem, she loves me, feel better.  When my friend wants to take me to breakfast and I tell her I’m too tired, she just says to let her know when I’m feeling up to it, and to feel better, and can she do anything for me?

So thank you to everyone in my life who’s supportive and understanding as we all work our way through the confusion that is Multiple Sclerosis.

Can Do and Can’t Do

Yet again I feel myself struggling with trying to understand my body now that I have MS.  “Struggling” sounds like such a heavy and negative word and I don’t feel quite that negative about it.  It’s just very frustrating for me to not be able to predict or know how my body is going to decide to act from one day to the next.

Monday I was adulting on a whole new level (for me, anyway) – I had my first colonoscopy.  I’m 37 years old and that’s generally quite early for a colonoscopy, but since there’s colon cancer on both sides of my family, the doctors deem it necessary.  So I spent all of Sunday on a clear liquids-only diet.  It should be a fairly simple thing, but when you combine diabetes and MS, it gets complicated.

I’ve had issues with my blood sugars dropping suddenly which is very dangerous and very scary.  I was worried about this happening Sunday as chicken broth doesn’t have many calories.  I decided not to take my diabetes pills nor my insulin all day to prevent a sudden drop.  I drank glasses of straight apple juice for the first time in years!  That was odd.  And I ate yellow Jell-o that was not sugar-free, also the first time in years for me.  I expect the change in diet and lack of regular medications was probably a slight wear on the body.

Then on Monday, I had to arrive at the hospital 2 hours before procedure time.  Rather than a regular colonoscopy, the gastroenterologist opted to have it done in the hospital operating room with an anesthesiologist… just to be safe in case the scope in my butt exacerbated MS symptoms and started causing spasms or some such.  So I sat in a hospital gown for 2 hours by myself, listening to some poor old woman on the other side of the curtain moan and gasp in pain as she recovered from whatever surgery she had.  I got a little emotional and started to tear up, so tired of the hospitals and medical shit that seem to encompass my life now.  I expect a lot of that was due to not taking my anti-depressant/anti-anxiety medicine for two days as well as being dehydrated and starving.  🙂

braidhair2Got that all over with and had positive results – no biopsy, no polyps, all clear!  So that was good news!  Tuesday I had a 9:00am physical therapy appointment and my therapist is working my frozen shoulder hard.  No mercy!  I’m up for it if it fixes my arm, but I think I scare all the old folks in the common gym room as I’m yelling and screaming out in pain, kicking and arching my body off the table as I cry out!  Hahah!  I know I’m making progress because I can just barely reach my arm far enough back to french braid my awesome rainbow hair!  That’s enough to make my day!

After that, I took two dozen donuts back to the hospital.  There must have been six or seven nurses that all looked after me during my several-hours stay and they were all very kind and comforting.  I wanted to say “thank you”…with donuts.  Heh.

But then when I got home, I found myself exhausted.  Too exhausted to cut up vegetables for dinner.  Too exhausted to do dishes.  Too exhausted to shower.  Barely able to get myself water.  Thankfully, my awesome husband understands these days and so when he came home from his long, shitty day at work, he cut up veggies and roasted them with chicken, cleaned up all the mess, and did it all with a smile.  He’s really wonderful like that.

coffeeThen today, I totally expected to be flat out exhausted.  I did dishes first thing in the morning before I ran out of steam.  Made espresso and stuck it in the freezer.  Ate an avocado with some queso fresco for breakfast.  Blended my espresso drink, which was so killer – gingerbread cookie dough with real bananas and freshly grated nutmeg on top… Café Mason!

I really wanted to make dinner for my husband tonight so he didn’t have to, but I was quickly running out of energy.  I’d talked to my grandmother and at the end of the conversation, I was yawning uncontrollably.  I hung up fully intending to take a nap, but… instead I took 1200mg of gabapentin and went into active-robot-mode.  The doctors don’t seem to know why it affects me that way, but my neurologist said to just go with it… whatever gets me through the day!

pizza2Once that kicked in, I made a huge batch of Herbes de Provence focaccia dough from scratch that I decided to use as pizza dough.  I crisped up half a pound of bacon that we had and then made a bacon-garlic tomato sauce for the pizza.  I chopped up all the veggies.  I did all the dishes from that.  I weighed out my dough into pizza-size balls.  And I’m considering getting another round of herbs started in my Aerogarden.  (I keep a food blog, so yes, I’m one of those people that take a lot of pictures of my food!)

Long story longer (I had shit to say, man!), I don’t understand how yesterday I can be so tired that I feel like I can barely move.  Today, I got so much accomplished (with the help of drugs, mind you) that I actually felt guilty for being at home and not working.  Tomorrow, I’ll probably be completely pooped and unable to do much of anything.  But who knows?!  Certainly not me!  And that’s the irritating part.  It’s so hard to plan for anything because I don’t know if I’m going to wake up incapacitated or ready to go, go, go!  And even when I can go, go, go, I don’t know how long it’s going to last before I hit that wall hard and just have to sit and veg (which I think just happened while I sat and typed up this post.)

The joys of MS.  At least I’m going to have kick ass pizza tonight.  🙂

MS and Opiates?

I just had a consultation for my very first colonoscopy.  I’m slightly young for it at 37, but due to colon cancer on both sides of my family, my siblings and I have been been instructed to start screening around 30-35.  I’m a few years late due to not being able to afford insurance before now.

It was my first time seeing this particular doctor, a gastroenterologist, and so MS was of course one of the first things I brought to his attention.  He asked if I had many symptoms with things like numbness and thinking function, which of course I do.  “Fatigue is my biggest symptom but I experience pretty much all symptoms to varying degrees and at different times.”

His response, “Then we’d better be safe and do this in the OR at the hospital and put you under full anesthesia.”  To his assistant, “This is going to be an ASA2.”  (ASA2 means a patient “with mild systemic disease; no functional limitation–eg, smoker with well-controlled HTN“).  Like many people with MS, I don’t process new info quickly anymore.  I find my brain seems to be two steps behind whomever’s doling out the new info because I’m still wrapping my head around the first sentence of new info.  It’s why I almost always ask my husband to come to my neurologist appointments with me.  I miss so much that he retains because if I go by myself, I’m trying to process and take notes at the same time, so I’m always missing info.

So after he states that I’ll need anesthesia he immediately leads me out of the room to his assistant who begins asking me all sorts of questions about what day to make the appointment, where to make it, what I can and can’t eat on this day and then on that day and then on the third day, what to do with my multiple medications – still take that one, don’t take this one, cut the third one in half…

It didn’t occur to me until after I got home to ask the most important question of all – why can’t I just have a normal exam?  Why does it have to be under full anesthesia? 

I looked online to see what kind of sedatives they give most people when they have a colonoscopy, and it seems they either give them opiates or benzodiazepines.  My neurologist prescribed me diazepam, which is very common for MS patients and falls under the latter category so I know those are okay.  I tried Googling MS and opiates but the only thing I could find was that in animal tests, opiates didn’t help relieve nerve pain so it’s sometimes not recommended for MS nerve pain, though there are many patients who say it does help.  Nothing about them not working for sedative reasons. 

When I was 9 years old I broke my arm rollerskating and that was the last time (maybe the only time?) I’ve ever been under anesthesia, so I honestly have no idea how it affects me.  Some researching into that overwhelmingly states anesthesia doesn’t usually affect MS patients any differently than it would a totally healthy person.  So that’s good news.

I have to go in to the doctor’s on Monday anyway to pick up the empty-your-everything drink (because my insurance denied it so the doctor’s office is giving me a free, sample kit, very nice of them).  I’ll ask at that time why it’s necessary.

Either way, this prep process sounds atrocious and I’m not looking forward to it.

 

Surprise!!! Fatigue!

MS and fatigue go hand in hand.  As far as I can tell, fatigue affects everyone with the disease to varying degrees.  And like everything with MS, it changes day to day depending on temperature, emotions, which planets are aligned with the moon, and who knows what else.

For me, one of the most inconvenient aspects of fatigue is the way it sneaks up on me.  For instance, I woke up this morning pretty sore, as usual.  After my husband left for work, I ate a small breakfast, did yoga, washed up the dishes, put away some laundry, then got some lunch.  Interspersed between all those activities I rested whilst watching episodes of whatever crappy television series I’ve decided to binge on this week.

The clock said noon and I thought, “I’ll go make myself some coffee… because later tonight, I’m going to cut up veggies and bake some chicken for spring rolls.  And maybe I’ll make a batch of cream cheese brownies this afternoon… yeah, that sounds good and won’t take very long!  And I’ll even be able to wash up all the dishes I dirty from baking!”

I had all these plans that seem so pathetically boring and ordinary… but you know how it is with MS.  If you get three mundane tasks accomplished in a day, you pretty much are the Champion of the World.  I was sure I had the energy to accomplish all of this today!

However, once I washed my lunch dishes and made my coffee, I felt like I could barely drag my ass into the other room to plop down in my chair in front of the tv and write this out.  I think that’s it for me today.  What a drag.

And now I won’t even have cream cheese brownies to eat.  Lame.  I knew I should have prioritized brownies before dishes and laundry!

 

MS Attack, Anxiety and Weed

I’m not sure how to organize this post.  I am weak and my mind isn’t completely up to par yet.  It may be more disjointed than usual, but I have the overwhelming need to write it right now rather than waiting.

I was at the ER last night.  I had a very scary MS attack.  Now that you have that info, let me try to back up.

I am a marijuana smoker.  I don’t discuss it in online or in public much.  Humboldt County, California, where I live, is known world-wide for the marijuana it produces.  It’s a part of our community.  It really is the main financial contribution to our community.  Whether you smoke it, grow it, or have absolutely no interest in it, if you live in this community, it affects you.

I’ve smoked since I was a teenager, and I’ve smoked “heavily” for the last 11 years (since I’ve lived in California).  By heavily, I mean every day.  I never smoked before work or during work (when I was working), but I would smoke every evening after work and all day long on the weekends.  Now that I’m no longer able to work due to MS, I smoke all day.  The quantity depends on how I feel… some days I smoke a lot, some days I only have a few hits.  I have a medical prescription for it and I smoke for various reasons – I smoke because I have a lot of back pain, I smoke because I have anxiety, I sometimes smoke because I’m depressed, I smoke because I have bad menstrual cramps, and sometimes I just smoke for recreation, because I enjoy getting high.

Needless to say, I am familiar with weed and its effects in most of its forms.  Several weeks ago, we visited a dispensary and I got this peanut butter and chocolate truffle.  It lists the quantity of THC on the box, which is 40mg.  I’ve made edibles at home myself with no way of knowing what the THC content is in a serving… it’s of those things where you generally start slow, see how it affects you, eat more after an hour or so if you feel you need it.  So when I read 40mg on it, I didn’t really know what that meant.  I did a Google search on dosing.  Most things I read said 10-20mg is good for inexperienced people.  I’d been feeling a little wild I guess and ate the whole thing.  After a few hours, I started feeling a little “too” high, and told my husband I was going to bed.  That was the end of that.  I felt like I probably wasted a real good high, but oh well.  Then a week or so after that, I got a different edible at the dispensary, like a Twix bar.  It, too, was 40mg.  Since the peanut butter truffle got me too high and made me want to sleep, I only ate about 1/3 of the Twix-like bar.  I didn’t even notice a high.  The next day, I ate the other 2/3 of it and still didn’t notice much of a high.  I discussed with my husband how I guess I’d need the whole 40mg at once to get the affects.

So… yesterday, after a heavy chiropractic appointment, where she “beat me up” a little, I then had lunch with a friend.  That’s more than I usually do in a single day.  But I didn’t stop there, I then visited the dispensary for some weed and saw they had those peanut butter truffles again, so I got a few of those to take home too.  Then I ran a few more errands after that.  I was exhausted at the end of the day since I’d done easily 4-5x more than I usually do in any given day.  When I say the chiropractor beat me up, I mean I had some messed up shit going on with my back and she really dug in hard in some spots to release a lot of knots that had been there for months… so my skin and muscles all over my back feel bruised (though my actual back pain feels better).  The day started with a lot of anxiety for various reasons, social situations mostly, but once those were done with, I found myself thinking they weren’t nearly as bad as I expected them to be and the anxiety and worry was for nothing.  I was in a good mood, picked my husband up from work, and went home to relax… by eating a peanut butter truffle.

I think it was about 7:30pm when I ate it, and I decided to eat the whole thing, based on my educated assessment of the last few times I ate edibles from the dispensary and feeling in the mood to party a little harder than usual on a Friday night.  Shortly after that, I ate some dinner and even had an ice cream treat for dessert, so there was food in my stomach.  If you’re not aware, edibles made with marijuana generally take some time to kick in… for me, it’s usually an hour to an hour and a half and the high can often build for an hour or two after the effects begin.  I noticed myself getting restless leg syndrome effects, which often happens to me when I get real high with either marijuana, psychedelic mushrooms and the one time in college I tried acid.  That didn’t seem abnormal.  My feet have moving, twitching issues when I’m sober, so I always have found it mildly amusing how drugs have heightened it.  I pointed it out to my husband when it happened last night and he took it in stride as well, knowing that’s just how my body works.

I was just relaxing in the living room with my husband, watching television.  We were both very chill.  As the high built and my legs got more restless, I turned to him and commented calmly about how I was really high and couldn’t hold my legs or feet still, even as I tried.  They just sort of kneaded on the chair and themselves, kind of like a cat will knead on something soft.  A few hours had gone by and around 10:00pm I turned to my husband and was like, “I think I’m too high now.”  “Do you want to go to bed?”  “No, I did that the last time with the peanut butter truffle and I don’t really want to waste the high.”  But by 10:30, the incessant kneading and restlessness of my legs and feet had turned into something more like jerking spasms.  It had me concerned, but not especially worried.  I told my husband that I probably had better just go try to sleep it off… I’d over done it.

I brushed my teeth, shakily.  I took out my contacts, shakily.  I performed normal bedtime functions.  But as I undressed and got into bed, the twitching started getting really terrible.  It wasn’t just my feet, it was full body trembling and jerking.  Now I was beginning to get worried.  My husband had come into the bedroom with me (to make sure I was okay, I think) and as I laid down in bed, the trembling got worse.  My teeth were clenching together hard and chattering.  My whole body was quivering.  I asked my husband to lay down with me and maybe just hold me to see if that helped.  When it didn’t, I asked him to maybe rub my legs, as they seemed to be the worst of it.  He tried to no avail.  Him holding me almost seemed to make it worse.  There was no way I was going to sleep when my whole body was jerking around.

My heart was beating very fast and my breath was short.  Since I’m diabetic, whenever something feels “weird” with my body, the first thing I do is test my blood sugar.  I couldn’t even do it myself, my hands and body were shaking so bad, I had to have my husband do it for me, but the numbers were normal.  Still, my hands were cold and we had a hard time getting any blood to come out of the puncture in my finger.  That, combined with the shortness of breath (it almost felt like something heavy was sitting on my chest or squeezing my heart), made me worry that maybe my blood pressure was dropping to a dangerous level, and I don’t have a blood pressure meter to test that.

Now the spasms in my legs were so violent and so frequent that my body was almost locking up.  This was a seizure of some sort.  It had to be.  I was fully conscious and able to recognize it but unable to do anything about it.  This began to be very scary for me, as I’ve never had a seizure.  I’ve never been so absolutely out of control with my own body.  I chattered through my teeth to my husband that he should help me get pajamas back on because I didn’t know if I’d even be able to walk down the stairs to get in the car for an ER visit, we might have to call an ambulance.  He helped me calmly, always keeping an eye on me and asking me if he could do anything else.  I sat on the edge of the bed, shaking all over, taking as deep of breaths as I could (which weren’t very deep due to the pressure I felt in my chest), willing myself so hard to calm down and relax, but I couldn’t.  It felt like massive adrenaline coursing through my body… like when you’ve been in a bad car accident, though that usually only lasts for a short time.  This had been happening for an hour and getting worse.  My husband, in all his calmness and clear headedness, asked me if I should take some gabapentin.  “Isn’t that supposed to help spasms and twitching?”  I hadn’t even thought about it!  They prescribed it to me partly for those reasons, but since I rarely have issues with those things, I tend to just take it to relieve my back pain.  I thought it was a good idea and probably wouldn’t hurt, so I did.  Still, I began worrying that I was going to have a heart attack and so I made the decision – “Let’s go to the ER.”

Driving to the ER, all I could think was, “What am I going to tell them?!  That I ate an edible and then this happened?  They’re going to take one look at my pink, blue and purple hair and think I’m  just some kid that got too high and am freaking out when I know that is not the case… that this is an MS attack.  But was it brought on by too much weed?  Is that even possible?  What if I actually have a heart attack and die?!  I’m going to be a media joke… the first person to die of a weed overdose.  I’m sure the additional anxiety of those thoughts didn’t help my situation at all.

By the time we walked into the ER, I was completely sober, my high being whisked away by fear (and it’d been almost 4 hours since I’d had the edible).  I was having a hard time walking, having to lean onto my husband.  Legs and arms and brain feeling like jelly.  The ER wasn’t very crowded and they called me to triage within the first 15-30 minutes of being there.  Some of the spasming had subsided, but as I sat with the triage person, my legs were still steadily and violently twitching.  The good news was he said my blood pressure and heart rate were fine.  I asked how long the wait to be seen was and he said it was running about two and a half hours.  I verified that he understood I had MS and was probably having an attack, and he said he knew.  I notified him that this was new to me, but it was my understanding that if I got a solu-medrol injection (heavy duty steroids) immediately, it would help stop the attack.  He said he knew that too, but there was nothing he could do… they had no available beds.  And so I was sent back to the waiting room.

In the waiting room, several of the other folks waiting began grumbling to each other about how long they’d been there.  One couple said they’d been there for over three hours.  We settled in for the long, long wait, assuming I’d be kept overnight in the hospital like last time, at least one night to get the first injection of the solu-medrol.  Over the next few hours, the spasming seemed to be less frequent, but still pretty hard when it hit.  Now it seemed solely isolated to my legs, my hands and arms had stopped their spasming.  At one point, 5 minutes had gone by with no spasms.  I asked my husband to look at the time and let’s see how it goes over the next half hour.  If they hadn’t called me back and the spasms stopped, I decided we’d leave.  Twenty minutes went by with nothing.  I felt so tired… fatigue had settled in hard after about 20 minutes of waiting at the ER.  My body had been spasming for the last four-five hours non-stop.  I have to imagine that’s like working out for four-five hours non-stop.  I just wanted to go home.  When that half hour had passed with no spasms, I made the call to leave.  I wonder if it was taking the gabapentin that helped calm the seizing?

I wanted a hit to calm my nerves, but I was a little leery of weed at that point.  We were both hungry leaving the hospital so we grabbed some terrible fast food, ate it quickly at home, and both crawled into bed exhausted.  Needless to say, I slept like a rock.  My poor husband dragged himself into work today at my urging – I felt weak, but alright this morning and I knew he had an extremely busy day waiting for him.  It’s now 3:30pm and I’ve been spasm free all day.  I’m seriously fatigued and weak, using two canes to walk around the house when I need a glass of water or the bathroom, but otherwise doing nothing at all until I decided I needed to write about my experience.

I told a friend about the experience I had last night.  He wondered if I actually got panic or anxiety from being too high and that triggered my attack.  I don’t recall feeling panic or anxiety at the time because I know exactly what being too high feels like and I know that it’s nothing to worry about, you just have to chill ride it out and take it easy and you will come down from the high eventually.  It’s nothing to worry about.  But… I have been experiencing so much more anxiety just in general lately.  It’s been so noticeable, affecting a lot of life for me.  Like I said, I was anxious about going to the chiropractor that morning… she was actually my employer when I got diagnosed.  I was anxious about telling her last fall I’d call her for lunch and then never doing it.  I was anxious because I knew the lady who had taken my place would ask questions about the job and I have such a horrible memory that I wouldn’t be able to help her.  I was anxious because I’d heard through the grapevine that the chiropractor’s husband had died over the summer and I didn’t find out until months later, so I felt bad that I didn’t attend the funeral and never sent a sympathy card (I thought it was too late to do it when I found out and didn’t want to bring up hurt that she was healing from).  I knew she’d bring it up and then how would that go?  I felt anxious because I asked a friend if she wanted to have lunch after my appointment, but I hadn’t talked to this friend in six months or so and would she feel like I’d been neglecting her?  I felt anxious because I knew I had several errands to run after these things and would I have the energy and be able to do them?  So my whole day was full of anxiety.

This is how my brain has been functioning a lot lately and I honestly don’t know what to do about it.  I think I’m going to have to seek counseling or meds or both because it’s clearly getting overwhelming and interrupting life.  But could it cause an MS attack?  I’ve never experienced anything remotely close to this before then I’ve gone overboard with weed.  Well… I was doing some research online today about MS and anxiety/panic attacks and I’m not finding a clear answer.  MS and anxiety go hand in hand, that much is clear.  But I’m not finding very clear answers.  One site says,

However, MS can also cause anxiety and depression as a result of the illness itself. Anxiety inflames various parts of the brain, and when the brain experiences damage and stress, it’s not uncommon for a person to experience anxiety. Depending on where the inflammation occurs, it may also provoke panic attacks as well. It’s not entirely clear why the mind causes anxiety when it’s experiencing problems, but it’s been well established in the literature.

…though it’s not a reliable source.

I found one person on a forum describe almost the exact same kind of attack as I had, preceded by too much marijuana, but the discussion on the site is closed.

Hi,
So I’m not sure if this is even possible (I’ve heard it isn’t so sorry if this is wrong), but I’ve recently had a run in with panic attacks. Although it started out almost like a small seizure, I heard that conscious seizures like the one I think I may have experienced are called simple partial seizures, but it turned out to be more of a panic attack eventually. I had felt slight derealization (or maybe depersonalization, I can never tell the difference) on and off all day, then eventually it hit me hard. It looked and felt like the walls in my room were super close, the air looked stuffy, my arms and legs went numb, got a high-like feeling when I hadn’t taken any drugs, and I was seeing some small things like tons of eye floaters and things twitching in the corners of my eye. Then the panic hit and my heart was pounding, my muscles wouldn’t stop trembling, and I was having hot and cold flashes. I ended up hearing sirens that weren’t there at some point, time was going by really fast, and it was just a frightening experience. I seriously thought I was sick and dying at some points, if this wasn’t the first panic attack I’ve had then I would have been even more scared. I was up the entire night because of it.
I have not been diagnosed with seizures or panic disorder, but this is the second time this has ever happened. I did get into Cannabis for the first time about a month ago, but when I had a weed induced panic attack from smoking too much (very similar to what I experienced the other night) only after second time of using I decided not to touch it again as it really freaked me out. I’m almost positive I have had a small seizure before also, but it was a while back.
Was this a normal panic attack? Could I have given myself panic disorder from just that small drug use? (I’m not looking for a diagnosis, I just want some insight on what someone thinks about this so I know where to go next.)

So I will just call my neurologist on Monday when her office is open and let her know what happened.  I have no doubt she’ll want to see me immediately.  And I will tell her exactly what happened.  And we’ll go from there.

Overall, a very scary experience for both of us.  We knew at some point another big attack would hit and I’d probably end up in the ER again.  That just seems inevitable for anyone with MS.  I just never imagined the seizure part!  So… another notch in the MS belt, I guess.

The Joys of Traveling with MS

…also read as, “Traveling with MS is Hell”.

A month ago I booked a last minute round trip ticket to Las Vegas where a large handful of family lives.  The airfare was cheap and it happened to coincide with my grandmother’s birthday, so my husband told me to just book the flight.

I would be traveling on my own, as my husband was unable to get time off of work, and these were the fears that haunted me for the two weeks between buying the ticket and taking off:

  • How would my energy levels handle taking two flights and spending all day in airports?
  • How damaged will my pride feel if I have to ask for wheelchair assistance at the airport?
  • How many days would one day of stressful, anxiety-filled travel knock me on my ass once I got to Vegas?
  • Will my family understand if I have to take a nap every day?
  • How much will I disappoint my family, who was already excitedly making evening plans with me, when I tell them I can’t do these things?
  • What if any of my $583-each injections gets damaged during travel?
  • What if one of my nephews snoop through my stuff and damage one of my injections?
  • If I’m staying with my brother and his new wife, whom I’ve never met, who will help me with the injection in my upper hip (basically my butt) that I can’t reach very well by myself?
  • Will the heat affect me negatively?
  • What if I get sick, as is common when one is in an airport and airplane… I haven’t had a cold or flu yet with MS but have been told to expect the worse.
  • What if I have an MS attack while I’m in Vegas?

And those were only my multiple sclerosis concerns… never mind the fact that I’d been having extreme back, shoulder and neck pain, that my digestive system does not like changes or travel, that several members of my family had recently been fighting with each other so I knew there’s be stress and drama and the fact that my emotional and anxiety levels have been at life-time highs.

Needless to say, I knew this was going to be a hell of a learning experience but it had to happen some time.

Being aware of my anxiety, I think I do pretty well at taking steps to avoid and relieve it wherever I can.  I immediately made a packing list that I kept adding to over the next couple weeks so that I wouldn’t forget anything.  I got a letter from both my MD and my neurologist stating that I’m diabetic and have MS so I will be carrying syringes and vials of medication and may require wheelchair assistance.  I decided to only take a travel-on suitcase so I didn’t have to worry about additional walking or waiting time at baggage claim – a week visit with only 1 extra pair of jeans, 2 tops, and 1 set of pajamas.  I made sure people were okay with me doing laundry several times while visiting!  I was really trying to do everything I could to make it easy on myself.

The alarm went off at 3:30am in order for me to get up, get ready and get to the airport at 5:00am to catch my 6:00am flight.  Getting through airport security at the tiny little airport I was taking off at was no problem, as suspected.  It takes about 1 minute and 30 seconds.  I was, however, disappointed that there was no water available to purchase once you got though security and that’s where the anxiety began, as I tend to get a dry cough when flying and sipping water alleviates that.  It was quickly forgotten though once they began boarding.  “We’re going to start boarding with any travelers who are active service duty, anyone traveling with an infant, or anyone who is disabled.”  I looked at my boarding group, the last one, Group 3, and I thought to myself, “I’m disabled!  I have a note from my doctor that says so!”

A little of me felt guilty at this point, as I had plenty of energy, but I justified it with the fact that I often choose a window seat at the back of the plane and I never get up for any reason, so it only makes sense for me to board first, get settled, and be out of everyone’s way.  It’s never made sense to me why they board the front of the plane first anyway.  The gate attendant didn’t even ask to see my doctor’s letter, I just said I have MS and I have fatigue and weakness issues and this was my first time flying with it.

The flight went well and fast, only 45 minutes.  I was nervous about how far I might have to walk when I got to San Francisco International, but as luck would have it, my connecting gate was just around the corner, not a long walk at all.  I grabbed a coffee and a croissant for breakfast and waited for my connection.  I again approached the gate attendant to explain my disability and he asked if I’d like a wheelchair waiting for me when I landed in Vegas.  I paused a moment to think about it and remembered when I flew to Vegas by myself two years ago, with perfect health, I had a very hard time navigating my way out of the damn airport, had to take a tram and do a lot of walking… so I said yes, please to the wheelchair.  Pride be damned, energy conservation is more important.

I’m so glad I did… it was a long ass walk through the airport, catching a tram, and then another long ass walk to the parking structure my brother was waiting for me at.  I felt a little bad that my energy wasn’t entirely sapped and I was a 37 year old woman being pushed in a chair all this way by Pat, a woman who was surely in her early 70s.  I had to keep reminding myself that I am disabled and while I don’t look it, my body would certainly have let me know it.  Still felt weird.

I also didn’t know if you were supposed to tip wheelchair attendants and when I asked my brother discreetly, he was also unsure… and so I left the lovely Pat with a lot of thanks but no tip.  Only later did my grandmother inform me that I should have tipped her.

The trip went well, and there’s no need to go into great detail.  I was awake every morning between 6:30-7:00 due to sleeping in a different bed, but I only ended up taking one nap at the end up the week.  I was pretty damn tired in the evenings, but luckily so was everyone else, being that most of them were working and/or dealing with children.  So I didn’t feel so out of place or a nuisance at all.  But when the end of the week came, I was really feeling it.  I was so ready to go home and just relax.  Even when I don’t take naps at home, I’m usually by myself, in a recliner, reading or watching a movie, expending very little energy.  In Vegas with no naps, I was still always visiting or doing something with someone, so it’s no wonder I felt so wiped out at the end of the week.

I didn’t plan the journey home as well as I did the journey out (but you can be sure I will next time!)  I hadn’t considered the line at airport security in Las Vegas.  It was a very long line, a lot of standing/shuffling and I was pooped by the time I made it through.  I’m still not exactly sure how to set up wheelchair service for next time – how would they know when and where to meet me when I got dropped off?  Would I have to wait in the check-in line with all the people who have luggage, even though I had no check-in luggage and a printed out boarding pass?  Something I’ll have to look into next time.  I’m sure if I’d had the wheelchair service, I wouldn’t have had to stand forever in that long security line.  Then, once I got through security, I again had to walk across the airport to their tram, get shuttled to a different part of the airport, and then walk to my gate.  It was a lot of walking with my two pieces of carry on and I was exhausted.  I requested a wheelchair to be waiting for me in San Francisco – I knew I’d need it.

In San Fran they wheeled me to my gate and I told them I was fine without the chair at that point, thank you.  I felt bad again because I wanted to tip the wheeler, now that I knew you were supposed to, but the smallest bill I had was a $10.  Had it been a $5, I’d have just given it to her, but I couldn’t make myself tip with a $10.  So I felt guilty.  I will be far better prepared for tipping attendants next time.  But once I was left there, my flight ended up being delayed… so I trudged my way back to the food court for some lunch, and then back to my gate again.  As I sat waiting for my delayed flight with a full belly and only a few hours of sleep, I was  nodding off.  I knew there was coffee somewhere in the airport, but as I walked and walked and walked, I couldn’t find it.  I felt my whole body growing weaker and much less coordinated, as I often get from pushing myself too hard with MS.  I have no doubt anyone who took notice of me would think I was drunk and stumbling.  I didn’t even care.  I finally asked a random gate attendant where the nearest coffee stand was and she pointed me to the right gate… at the end of a remote spoke of the airport.  By the time I got there, I was trying to explain to the barista that he heard me correctly, yes I wanted 5 shots of espresso in my blended drink.  When I finally got to my gate again, I think I texted my husband that I wished I were dead.  That’s how horrible I felt.  And that there was no way I was ever traveling like this alone again.

I finally made it home and I couldn’t think.  I told my husband I wanted a smoothie… no, I wanted spring rolls, no, I wanted a smoothie…. no, I’ll just eat what was at home.  No, I want a smoothie and spring rolls.  My mind was just blasted.  And I think somehow my MS energy relates to my blood sugar/diabetes, but I haven’t figured out how yet.  Because I was sucking down a “fake” smoothie from the drive-thru coffee place which is just made with ice and a fruit syrup mixture, so I thought my blood sugar would be screaming high.  But when I checked it at home because I was feeling weird, it had dropped to a dangerously low level… which made no sense at all.  So then I’m asking my husband to bring me some juice and dried cranberries which I’m throwing back along with the smoothie to try to raise my sugars up.  And low blood sugars hit my body real hard too on the rare occasions they happen – the mind gets mushy and slow, I’m freezing but sweating, motor skills start failing, heart beats fast, and I feel like I can’t even move.  So combine that with the MS symptoms of fatigue – slow, mushy brian, poor motor skills, low energy.  It was pretty much like I’d been run over by a truck.  (Or I wished I had!)

In summary – traveling with MS sucks ass.  It’s been six full days since I’ve been home and I still don’t feel all the way recovered or rested, I’m still weak and with less energy than usual.  I don’t want to do it again.  I know I’ll have to at some point, and I’ll remember all the things that I learned with this trip, and I’ll do it and I’ll survive.  But it was hard, man.  Hard and unpleasant.  That’s for sure.

 

Infinite Flux

A few nights ago, I had an emotional conversation with my husband.  I told him I felt like my anxiety and worry had come to an all-time high and I asked him if a) he’d noticed the same, and b) was it affecting him adversely?

By emotional, I mean I cry a lot more than I ever have in my life.  I cry at everything – every abused animal commercial, every time a duckling dies on some PBS show.  I cry thinking about the imminent death of my perfectly healthy cats.  Sometimes, I just cry for no reason!

And the anxiety… jesus, it’s gotten all-consuming!  I’ve either always been this much of a control freak but been distracted enough by working full time that I didn’t have time to focus on it, or my control-freakiness has amped up a few notches – and if the latter is the case, then why?!

My husband said he had noticed the increased anxiety, but fortunately he said it wasn’t bothering him or getting in the way of life.  He and I are both pretty analytical people and often find we’re analyzing the psychology of ourselves as well as others.  So we began trying to figure out why.

It’s been just over a year since I was diagnosed.  I find myself depressed more often and anxious as hell about everything.  Shouldn’t it only be getting easier?  So why do I feel like it’s actually getting worse?

After some brainstorming between the two of us, my husband hit on it exactly… what he said made so much sense to me.  It was that Eureka! moment.  In turn, it helped me understand and be okay with (a little more, anyway) what I was going through internally.

He said our lives were now in infinite flux.

As an analytical person with anxiety, I think of every possible outcome for a situation, which of course includes thinking of worst-case-scenarios and I have a plan of attack in place so I’m not taken by surprise.  That would drive most people batshit crazy.  It’s what brings me peace of mind.  Before I was diagnosed, there was very little in our lives that was threatened with change at any given time.  Our jobs were steady, our debt was almost clear, our health was relatively good and steady.  So there was very little to worry over, very few plans to be considered and made.

As soon as I was diagnosed, all of that changed.  These thoughts were going through my head in the hospital and subsequently, this whole past year.  Suddenly, I couldn’t go back to work, so I had to assess  a)what would happen if I returned to work immediately?  b) if I returned to work in six months?  c) would I still have a job?  d) how difficult would it be to get a new job if my energy could suddenly give out on me for an indeterminate length of time? e) what if I couldn’t work? f) would I qualify for Social Security disability?  g) how would we live if I had no income and didn’t get approved for two years?  h) would disability alone be enough for us to pay rent and all our bills, along with the husband’s income?

Then we’ve had a year of ridiculous insurance snafus that I’ve had to deal with.  I’m constantly on the phone with the insurance company to make sure they’re covering what they should.  To request my out-of-network neurologist visits (the only neurologist in town) be covered as in-network.  To report numerous changes in income as I stopped working, then tried working part time, then got state disability, then got Social Security disability, then the husband got a raise.  I had to be on the phone with the county and state as they incorrectly deemed us qualified for Medicaid, which we didn’t qualify for.  My injections come via mail order, and when I have the shitty pharmacy, I spend about an hour a month on the phone with them working out a shipment.  When that goes wrong, I have to get on the phone with MS Lifelines to tell them the pharmacy is being shitty.  Then they transfer my prescriptions to a better better pharmacy, but my insurance says the better one is out of network and I need to change it.  I try explaining to them that it doesn’t matter because the pharmaceutical company is picking up the bill and they’re the ones saying it doesn’t matter.

There’s MS itself to deal with.  At any given time, I can have symptoms strike.  Any day I can have an attack come at me out of nowhere.  How bad will it be?  How long will it last?  Will I choose to have a steroid infusion that makes me feel like I’m about to have a heart attack and die, or will I choose to ride it out?  Will I have to go to the hospital?  How long will the next hospital visit be?  What if I have to share a room with a crazy person again?  What if with the next attack, I can’t walk up the stairs to our second story apartment?

So much that I can’t predict, that I can’t plan for.  Which I believe is why I end up over-emotional.  I’m frustrated and I feel out of control.  Things that I’ve always grasped and held on to for emotional stability just keep slipping through my fingers; I can’t get a grip.

These things are never going to go away.  They are now ever-present in our lives.  Our lives are now in infinite flux.  It’s not to say I can’t live with it… I just have to learn to think differently.  There’s so much that I can’t control anymore, that I can’t keep trying to control, or it will drive me nuts.  It is driving me nuts!  But like I said, now that it has a name, now that I understand the reason better, I can try to make adjustments to my way of thinking so that I’m not stressed about them as much.  I don’t think it’s going to be easy… it’s not the way I handle things.  And I think it’ll be a long process to change the way I think… but I believe the important thing is that I think I can.  Might take work, might take time, but I think it can happen.

I find myself thinking of this quote from the movie “Humboldt County” (a movie based on the area where I live).  I always liked this quote a lot.  And I think I need to learn to be more liquid.

Solids and liquids are differentiated one from another by the way the material responds to stress.  If the material deforms, stays deformed, or springs back when the stress is removed, it’s a solid.  If instead, the material flows when stressed and rearranges itself in such a way as to remove the stress, it’s a liquid.