And So There Was Two

Well Well Well.... The first week of two tablets has came and went and what's the prognosis?
This one is a fkning doozy. I mean I don't want to scare the readers who are reading this for their own tapering process and remember EVERYONE IS DIFFERENT but this last round, for me, it hasn't been easy. Honestly, I have been hurting. BUT we figured this was going to happen at some point and I think a couple of blogs back I said maybe when I am down to two pills I will feel it, and I was right.

So the fingers just continue to hurt and whenever I really use my hands like cooking or dishes or whatever, they will swell and just ache.  But the other night my pain was so bad between my back, my ankles, and my knees that it literally woke me up from my sleep and I had to put the heating pad on for like two hours.  Today has been an interesting one.  I woke up with sciatic pain. Like a constant shooting pain in the middle of my ass and it hurts so much to walk.  A five minute walk to my office from the bus turned in to almost 20 and I wish I was exaggerating. I did bring my heating pad with me and luckily my coworkers get it.  My usual daily meeting that would happen in the conference room took place in my office as I kept the heating pad warming the sciatic nerve. A couple hours of swamp ass later, I feel a bit better.  Limping less.

I wanted to quickly chat about memory because it's funny how we forget things like particular moments in life but quickly remember them by a song or perhaps a certain smell.  I sometimes forget what is was like prior to being on my meds, I know I mentioned how I don't remember having average health but I also don't remember being "sickish" without any medicine.  I was telling my fiance that memories keep coming back to me like being on a bus to get into work and not being able to open my water bottle. Sometimes I'd snack on the bus in the morning and I would be dying of thirst not because I didn't have any water, but because I was so embarrassed to ask someone to open the water for me.  I'd run in and have my coworker Lenny turn the cap of the Poland Spring for me. Luckily I can still open my bottles myself but it isn't as easy as it once was.  Even turning a door handle or buttoning my pants becomes a bit harder at times.  One day last week I had trouble doing my eyeliner because it requires a certain bend of my finger and a flick of the wrist to perfect my cat eye.  Lord please, I'll take an achy ankle or two as long as you leave my eyeliner alone.  I can take a limp - what I CAN'T take is the look of a wobbly eyeliner. Haha all jokes. I kid I kid. (not really) 

So okay, this week hasn't been the BEST but whatever I have been doing pretty damn good thus far and I can't have it all. I should have bad days and I am sure I will continue to have some not so great days.  The good thing is I am one step closer to being completely off.  Hopefully my doctor will prescribe me a muscle relaxer or something to help me get through the real pain days and I should be taking some blood work this week.  Let's see how it all goes..

By next week, I should be METHOTREXATE FREE !!! Can't Friggen Believe It! Till then XOXO!

Peaks and Valleys

It has been TWO weeks since my last post and a LOT has happened. Well maybe not a whole lot but some significant changes.

One - I took my first round of blood last week.. it has been on my mind since the minute I walked out of Quest Diagnostic.
Two - I have been a bit achy.. my fingers the most and the usual wrists and ankles for sure but my hands will throb and I feel like I can't really make a full fist.  It does come and go and honestly I can take this pain with the help of an anti-inflammatory or Tramadol if needed.
Three - I finally got my results back today.  And they look GREAT to me! I am still waiting to talk to my doctor, I am sure I will hear from him tonight via email however my Creatine Kinase (what can show inflammation) has risen a bit from 21U/L to 24 U/L - the norm is 29-143.  Obviously I'd want to be mid range but honestly, I am just happy to be somewhat closer to NORMAL numbers.  The shocker of all shockers was my WBC.  Since tapering off my meds they completely shot up.  I was once at 2.0 thous/mcL, my last read was 2.6 and weeks later since getting to 6 tablets a week - I am at 3.4! The normal range is 3.8-10.8 so I am SO HAPPY.  My liver levels look great and my C3 and C4 are all in range.  ALL IS WELL.  My doctor actually emailed me: "Hello Jacki--your labs were good--almost entirely normal."  Could you believe it?! ALMOST ENTIRELY NORMAL! Ugh music to my ears ❤

I titled this blog Peaks and Valleys for a reason.  When I was younger I had read a book my father picked up for me titled Peaks and Valleys.  It basically discussed the ups and downs of life and it really did put things into perspective for me.  Life isn't always great and shit happens and sometimes you are in the Valley.  Who knows how long you'll be there.. hopefully not long but it's okay because eventually you will be in the Peak again! This week has been a good week so far.  My girlfriends threw me a beautiful surprise bridal shower two days ago.  Yesterday, my fiance had his last successful operation on his leg which went really good, god willing and today I got the best blood results! I hope this Peak remains a bit longer since my 32nd birthday is 4 days a way! KNOCK ON WOOD!  Lets keep the Peak rollin!

I have one more week taking the 4 tablets and next Tuesday is the doozy. Going to just TWO pills till we stop ALTOGETHER.  I feel like it's so wild but I am so excited to just be off of it completely.  I found a new yoga place by my house and this yoga class is a bit longer but it was so awesome I am going to keep trying to make it there every Sunday and just keep this momentum going.  I decided to spend the extra money in massages and do things that make me happy, like booking a trip or buying that pair of shoes I wanted. I of course want to be physically healthier but mentally healthier too and every small change will help me get there.  I just know it.  Till next week!! XOXO

Sausage Fingers

Ah, the Tuesday after Memorial Day Weekend. YAWN. Would love nothing more than to be back home, doing nothing.  The working man's a sucker.  Figure to take some time out and discuss what has been going on with the 6 pill tapering.  Today is the day I take my next dose for 6 methotrexate pills and as you can see in my blog title, my body needs it.  I am so excited to take my medicine tonight because I am really swollen. My fingers are pretty bad - they really hurt today. This is a new kind of pain that I experienced on Easter too.  I was thinking about maybe getting a paraffin bath but I am not sure if it really would work?  I will do some research on it today.  My back was also hurting last night so I used the heating pad to help put me to bed and also this morning before I got up to get ready for work. It helps.  Tonight I will try to make yoga at 8:30 at my gym. Some stretching may help the fingers and bones. My ankles and feet hurt too but instead of staying behind the desk, I took about a 20 block walk today at lunch. Sometimes when you are in pain you just want to get into bed and not move but it's better for you to stay active.  I have to remind myself to get up and stretch more at work.  At some point I will get a mat for 10 minute stretch sessions.  My job already thinks I am a lunatic, so what do I have to lose? A couple of years ago I walked around with a back brace on to improve my posture - I literally looked like a toy soldier (and FYI my posture is no different, so save yourself the time and money and just push your damn shoulders back on your own ). 

Meanwhile, I am not sure if this has anything to do with the methotrexate but I got my period about a week early.  I tried to research a bit on this and everyone is different but there are a lot of people who have irregular periods or heavy bleeding with being on methotrexate.  I always was irregular, I mean it comes every month but definitely different days. However within I'd say a three day range.  This was way earlier than regular and I do feel like it has been heavier too. And I am positive that when I wash my hair I am not losing as much hair than usual. This proves that for me - the high dose of methotrexate was very much affecting my hair and nails even though I was on folic acid. My nails seem stronger because even though I get gel manicures, they would still crack down vertically and then not only is your manicure ugly but it can crack so low that it hurts.  As for my hair, I would sometimes wash my hair and I'd have to take a ridiculous mound of hair out of the drain.  There is still hair that falls out now but its not anywhere near as much so this is all good signs.  If only my fat fingers would calm the f down, I'd be in great shape. 

Also, I am still trying to do the sugar free thang.  I was getting headaches but this weekend we had friends over so I did indulge for dessert time but I did keep the espresso sugar free which is so strong but I am getting used to it.  I looked up Starbucks sugar free options and today I treated myself to a Tall Vanilla Skinny Latte which is Starbucks terminology for a small skim milk latte with sugar free vanilla syrup. It's pretty good. That can be a treat here and there because I don't really like to have the milk. 

I take blood next Monday so I will write after that.  I am eager to see if my white blood cells rise because people who are on methotrexate (or just have autoimmune issues) will commonly have low WBC and my count is LOW.  My WBC can vary between 2.0 - 2.6 thous/mcl and the normal level is 3.8 - 10.8 thous/mcl. My last hospital visit was so crazy that everyone had to wear masks because my WBC was so low I couldn't leave the room.  I was like the boy in the bubble, minus the bubble. And now in regular life, I always have to be careful around anyone who is sick or take precaution when I feel under the weather. Having low WBC can increase your risk of developing a potentially life-threatening infection so with that being said I am hoping that with reducing my meds it will get a bit higher. 

After blood - we go down to 4 pills!! Hip hip hooray! Speak to you then! 

Six Tablets and Sugar is the Devil

So this blog will be broken into two updates.  One, I had emailed my doctor on Monday morning and happy to see the man replied back to me Monday afternoon.  I can't stress enough how happy it makes me that I have this type of communication with my physician. No middle man secretary, straight from the horse's mouth. You know, I have used that phrase before and yet have no clue where it stems from.  This is a reason for the google.. please hold... Ah. It is a 20th century phrase: 

In horse racing circles tips on which horse is a likely winner circulate amongst punters. The most trusted authorities are considered to be those in closest touch with the recent form of the horse, that is, stable lads, trainers etc. The notional 'from the horse's mouth' is supposed to indicate one step better than even that inner circle, that is, the horse itself.

Well would ya look at that.  Learn something new everyday. Well anywho - I did explain to my doc that I feel good on the 8 and I am not sure if I should take blood now or since I feel good go right into 6 tablets this Tuesday.  He gave the green light for the 6 tablets.  Take them for two weeks and go get blood.  This is good for two reasons, one: although I have insurance, I will still pay partly for a blood workup and sometimes this is over $200.00 a pop.  Therefore, the less blood work the better.  Two: It means that I am progressing nicely which is what I had hoped for.

Feeling wise? I am tired. But this week had pretty shitty weather and I am okay in the inflammation area.  Just my left knee again, there's a little bit of pain there. The ankles and the wrists feel good but like I had said in my last blog, it will take a couple of days to really feel the effects of taking less tablets. Hopefully by the weekend I will feel good and reassured that I am tapering nicely. 

On another note, I had serious hypochondria last night. Which goes into the second part of my blog title. So anyone who knows me knows I have a sweet tooth.  My parents house was a house where Twizzlers, mini powdered donuts, and ice cream are staple items like milk and eggs.  And lets be honest, yes I could have had the will power to avoid them but I didn't because they are DELICIOUS and some how me and my entire family stayed thin so whats the harm in having some yummy treats?  BUT when I moved out with my fiance - he doesn't really have a sweet tooth.  He will indulge in cake or cookies but he doesn't really crave it however if it's there he will eat it.  Which means he would ask me to stop getting it because before we knew it - he ate the majority of it.  We also used to have Italian bread regularly with meals however I'd say about 8 months ago we kind of changed our style of eating.  No more bread, unless it's sliced 40 calorie whole grain.  Only whole grain or gluten free pasta and brown rice.  We do not have anything other than water and coffee in the house and our eggs and milk are organic.  BUT on the weekends we do get cookies or bake brownies or something yummy and I think sometimes that's okay. However, last night after my craving kicked in I started to research sugar cravings and came across a billion blogs of people who cut sugar out of their diet and said how much better they feel. Sugar makes you tired, it makes you fatter, it can cause cancer, and above all INFLAMMATION.  I got myself so crazy I have decided today is the day - I am cutting sugar as much as possible.  I will occasionally have wine but I will try to have more red than white since there's less sugar.  I have a double shot of espresso every morning and usually with two packets of raw sugar.  Today I just had one stevia and it wasn't terrible but tomorrow I am going to try to have nothing but the espresso. Eventually I should get used to it. Essentially caffeine is not great for inflammation either but I will be sleeping at my desk without it. 

And look, don't get me wrong, I will have sugar here and there when it comes to holidays or birthdays or even if we go out to a nice restaurant and we want dessert.  However, in my everyday life - I am going to remove it.  No more croissants or brownies every weekend.  If I do decide for a treat, there are tons of recipes that are sugar free and it should do the trick of calming a craving.  Also, I will still allow myself to have fruit.  Fruit is delicious and I love berries so that will be my "go to fruit". Everything in moderation!! One blog I read the woman said she had ice cream every night. EVERY NIGHT.  And if she can do it - so can I. GAME ON. 

We will see how this goes and if you are down with getting rid of sugar in your diet, Join me! Lord knows I'd do better with a friend!!  #SUGARFREECHALLENGEBIATCHHHHH !! 

Speak to you next week! 

XOXOXOXO

Eight Pills and Counting..

8:49 AM on beautiful, sunny, warm Thursday in May and feeling great!

I waited to write on the first week or so for the 8 pill taper just because I know that sometimes if I miss my pills during the week, I really won't start to feel the pain till that Friday perhaps.  I didn't want to jump the gun and write about how I feel great unless I knew that my body isn't trying to slow play me and I really do feel great. But I do! I mean, I feel no different than the 10 pills I was taking.

Last Monday night I actually emailed my doctor in the morning to make sure I should take 8 in one shot.  He got back to me (I thank god for a doctor who answers his OWN emails - this is NOT the norm) and he said take all 8 on Tuesday.  Now its my SECOND week, again I took 8 pills two days ago and I feel good.  I mean a little tightness on my left wrist but that's baby pain compared.  So all in all the tapering is going good.  I feel now it may not really get "rough" till I am in possibly lower numbers like 4-2 tablets left.  I assume next week I will either go for blood or go on to 6 pills since I am feeling okay.  I will reach out to the doctor next week and see what the next steps are.  I also do hope that the prenatal pill I am taking gives me a little boost as well. Not sure if you or whomever you know is on Methotrexate and experiences hair loss or nail weakness but I do and I truly think I am losing less hair lately.  Perhaps the prenatal is helping me out there.  I always took a daily folic acid but maybe the extra bit in the prenatal vitamin is helping too.

I must say, I am grateful that I began this during the summer months.  I do feel like the weather helps - not even so much because the rain or dampness causes inflammation but more so because the nicer weather puts me in a better mood.  Spring is my favorite season and best of all, its BBQ time.  That means less stress on what to cook, less cleaning, and less work for me altogether since he will be maintaining the grill. I am sure the fatigue will be a bit worse by June/July and it will be nice to just be in charge of the side dishes!

As much as I like to keep this blog positive I do want to keep this blog real.  Yes I am trying my best to keep it optimistic. I know I am going to be okay because I have to be okay but I do get upset. I do cry. I am frustrated at times.  Last night I had a 10 minute mini crying session of why things are hard for me.  Or rather, why I feel nothing is ever "easy" for me.  But 10 minutes is all I will really give myself to wallow in self pity.  Yes, for me a lot of various things in my life haven't worked out as I had hoped and planned. Yes, I don't have the average journey of another woman who can get pregnant easily but I am not alone.  Unfortunately there are a lot of women who have to plan pregnancy as oppose to just "trying".  And that's okay.  I have to remember with whatever issues I have, someone else out there is much worse and I am lucky and blessed in many other ways.  There will be times you will lose sight of that and I hope that you have the strength and the strength of loved ones around you to guide you back to seeing the brighter side of things. Nothing is forever and life is made up of peaks and valleys and we all get through it, one day at a time.

Until next week!
xoxo

Time to Taper

Well this blog is late, but better late than never, right!?  I feel like most people who run late (which is commonly me) say that to make themselves feel better, meaning more or less like "bitch I could have not come at all".  haha BUT I do have good reasoning behind it so let me jump right into what has been going on in my neck of the woods.

So Easter came and went and I decided to cook and bake and all that good stuff and there went my fingers.  They were completely blown up more than I have ever seen before to the point where I couldn't make a fist or wear my rings.  And it just went to shit from there honestly. Joint pain on another level, had to take off of work, and then the side of my face started to swell and throb.  That I believe is the Sjogren's coming out to play.  So all in all I had a bout of a mini flare. I could have called the doctor and did a small round of steroids but I am a trooper (or I am trying to be) and the less of the roids the better. I got through it and then I had to fly out to San Diego for a week for work. Thankfully no flaring there and I was able to get through a really good work week with just the regular fatigue.

Now I am home and had my second meeting with my doctor today who was able to go through my blood work with me in person. Today he said after looking through it, I really lean more towards Lupus than anything else. Apparently the CCP IgG test came back normal and for someone who has Rheumatoid Arthritis, that level is usually positive.  However all Lupus tests came back positive and with high numbers, which more or less means either I still have MCTD leaning more towards Lupus or just full blown Lupus.  WHO THE HELL KNOWS. Regardless, he said it doesn't look bad, we already know that there's autoimmune issues within me - lets figure out what the steps are to get off the methotrexate.

Now the last doctor I had was having me go cold turkey - just STOP the medication and lets see. Which after reading, this may work for some people though not the recommended way. This new doctor is having me taper.  I usually take 10 tablets a week (spread between two days), which is the highest amount anyone can take for metho. So next week we go to 8 tablets. I'll do that for some time and then take blood work.  More or less I will be tapering and getting blood work and tapering and getting blood work.. and keep doing this until I am completely off.  He also gave me a steroid script just in case I start to flare but we are crossing our fingers and hoping for the best that I will never have to use it.

Note: the methotrexate comes out of the body quickly maybe like 3-4 weeks he said.. the reason you wait 3-6 months is for you to develop healthy eggs without any trace of the medication. Good to know. Makes sense.  I wouldn't want to even remotely try till I am back from my honeymoon which is in November and make sure I don't get the Zika. Then we can hopefully have some fun trying for a mini me baby.

I also showed him my knee which I feel has been acting up here and there and now has been sort of clicking and you know what he told me? I need to strengthen my knees, try some squats.  Like TELL ME SOMETHING I DON'T KNOW.  My ass has been asking for that for years. Pshhh...

So on the to do list for next week? 8 pills, and the gym.  😩  In all seriousness, I do need to up the yoga and stuff now that I am tapering.  I have been using an acupressure mat that my girlfriend got me and I lay it on the floor and lay down on it for like 30 minutes.  It helps.  I also started to sleep on a heating pad which has more or less changed my life.  Heat therapy = THE BEST. At least for me it is.  Don't knock it till ya try it.

I will keep writing weekly now.. let the tapering begin. yey!

The First Tuesday of April Has Arrived

If you want to make God laugh, tell him about your plans.

- Woody Allen                                                                      

So as you may have guessed there has been a wrench thrown in my plans for coming off the methotrexate.  Lots changed - one being that I decided to change my rheumatologist.  I have been desperate to find a doctor that is smart, has a great bedside manner, is somewhat local, takes my insurance and will call me if I reach out for an emergency.  Am I asking for too much? Possibly because I swear it is not an easy find.  My previous doctor I did like however after two years the man just started to get too many strikes.  At this point I am too scared to use to him at a crucial time like this.  So with that, I gathered up all my blood work (Make sure you always get copies of all your blood work. This way should you need to change doctors one day, the new doctor will get a better feeling of you as a patient by reviewing your labs) and met my new doctor yesterday.  He seems good, first impression went well, and his secretary seemed super nice (which is ALWAYS a plus).  

Second thing to change was work plans. At the end of this month I have a week long work trip across the country for a trade show. It is a lot of walking around, meetings, late dinners.. it's A LOT, even for a healthy person. 

Third, the weather in NY last week was HORRIBLE. Depressing rain all day, cold and windy. I don't know about you but for me, the weather always throws my body for a loop.  I was limping a bit last week - one ankle was acting up.  I even took a day off to stay home and rest. Thankful to be able to do my work in my bed, off my laptop! 

And last but not least: Unforeseeable STRESS.  Stress is a very common trigger for a flare up, so right now just is not the time. I am actually going to Yoga tonight, some meditation, stretching and deep breathing helps eliminate my pain and just resets the mind for the better.  For me, it works.  I'm no yogi by any means but I for sure would love to be. 

All in all - all signs point to delaying everything at least a month.  Which frankly annoys me because I am eager to get this ball rolling!! But mentally I am telling myself "Jacki, just take your time, do it right girl, you'll get off the meds but if you rush it - YOU WILL FLARE." Flaring scares the sh!t out of me because hospital stays are obviously the worst and I have had my fair share. All I have to do is think about being in that ugly blue gown and not being able to shower and I am like OKAY, whatever I gotta do, I WILL DO just to avoid the damn hospital.  Luckily my fiance gets it - he is super supportive and if we can try for a baby tomorrow, great, if not, its totally fine.  No pressure, no disappointment, and completely supportive (thank you for that Fluffy).

So back to the new doctor - who after looking me over and seeing my extensive lab packet, ALSO believes I have MCTD.  Althoughhhhhhh he did say I lean more towards Lupus.  FYI I tell everyone I have RA because I feel like people recognize the term RA. RA? Rheumatoid Arthritis?.. Ah Arthritis, her body aches, okay, got it.  Which is really the truth, the real problem I have everyday is my body aches, like more often than not and I am really tired, like a lot.  It's funny, he asked me what is it that I feel? And truthfully - I know I have pain - but after you have this ongoing pain for so long, you live with it.  It becomes your new norm. The fatigue? I know it's bad, but I AM ALWAYS TIRED so really I don't have a normal scale of someone who's like I dunno, average tired.  I just know, no matter how much sleep I get, I'm still tired.  Side note: he did tell me that I should lower the Plaquenil I take to one pill a day instead of two.  Apparently new studies show that too much Plaquenil aint the best.  Any who - new blood work will be taken tonight.. new numbers should be in by Friday so here's hoping for some stable news. I will make sure to write sometime next week.

Another mention - this doctor did tell me that Sulfasalazine and Plaquenil are a-okay for taking during conceiving period.  Which is in compliance with my previous doctor AS WELL AS my gynecologist. He did say that prednisone, should I need it, is okay to take as well. Gyno and last Rheumo told me the same however mehhhhhhhh- I know if I need it - I'll take it but I'm going to hope for the best and positive thinking = positive results. Ever read the book The Secret? There has to be some truth in that. #ASKBELIEVERECEIVE 

Speak to ya'll when the new labs are in.. fingers crossed!