Well... some time has passed.. a month since my last post. The last blood work came back in July and my numbers were AMAZING. Doctor said they were "relatively normal." My white blood cells were the highest they had been in 7 years! I took blood again at the beginning of this month and by now I suppose by now the methotrexate is basically out of my system (minus the trace of it possibly in my eggs). Truthfully, there has been a change in my body since last month - I am starting to really feel it. It hasn't been easy to wake up with pain every morning but I know it will be worth it so the show must go on. This month my results weren't as great as last month, my WBC dropped a bit and I have low glucose BUT my doctor wasn't concerned therefore I am not. We will see what next month looks like.
So where is the pain mostly for me? MY HANDS! Ugh, every morning I wake up and I can not make a fist. My fingers are SWOLLEN. I try not to over work them at night and I went out and bought a paraffin. I got the Homedics one at Bed, Bath and Beyond - $40 bucks.. works great. The pain subsides for a bit with the heat and it doesn't seem to have long term effects, but short form - and that's fine by me. The rest of my body does hurt here and there, sometimes it aches to even lift my arms. Those days I will work from home, which I have, and also I decided that when I am really in pain - either NOT wash my hair or go get a cheap blow out. The less work the BETTER. Yoga has been helping and every morning I try to stretch at my desk before I start my day. Whatever helps.
Some news.... This might sound a bit nutty but I have reached out to an alternative physician to look over my "case". On days where the pain is unbearable I have been resulting to taking Tramadol to help me through the day. I only take one tablet or a tablet in a half if needed however I really do not like to rely on pain killers of any sort - even Aleve - if i don't have to. So that's where Dr. Joseph will hopefully come in. I have an appointment with him next month and let's see what his thoughts are. I explained in my email that I was hoping to not have to depend on medication and maybe he has some better life changing methods to alleviate the constant pain. Truthfully, there is no way I would be able to manage getting through the day without help from SOMETHING. And I pray it doesn't get worse but last month has been different from this month.
Another thing that has been an issue is fatigue. I try to sleep on the bus to and from work and go to bed no later than 10pm but I am tired constantly. After my fiance and I watched WHAT THE HEALTH on Netflix we have decided to try to eat more plant based so hopefully that will help generate some energy. All in all whatever this new doctor tells me to do I am going to do. I plan to bring my fiance with me because there may be things that will have to change his lifestyle as well (like eating habits) and thank god he is health conscious so whatever changes are to improve our everyday life, I am sure he will be down for.
I don't mean to scare the readers that are planning to go off the medicine, just know this, while the pain is there - for me, its bearable. You will need help - cleaning help or cooking help - and if you have the means to go out to eat or have a cleaning lady to scrub the bathroom or toilets, now is the time. I never used to use the dishwasher. My fiance and I would scrub the dishes each night. Now? That dishwasher is my very best friend. Do what you can to make life more livable. Instead of watching TV on the couch - take the time to lay down on the floor (I lay on my Acupressure mat I mentioned in an earlier blog) and I do breathing exercises. Little things like that will help day to day. If I can do it, so can you.
I will write again right after my appointment with my "holistic healer". (That's what I nicknamed him already hehe) Till then! xoxoxo
- jac
Friday, August 18, 2017
Wednesday, July 12, 2017
METHOTREXATE FREE BITCHES!
Hello!! It is ME, AND I'M METHO FREE !
I just can not believe it!!! SO, last week I officially have been off the methotrexate. Still taking the Sulfasalazine and the Plaquenil but no methotrexate! And I actually feel okay. I mean, not GREAT, but not TERRIBLE. BUT I will say this, I wasn't always the best with refilling my meds and sometimes I would miss Tuesdays hit of Methotrexate and then not able to take them till about Friday and I WOULD REALLY FEEL IT. My body would like yearn for the hit like a crackhead. So in my mind, those couple of medicine free days was kind of like going cold turkey for the time being. But when that happened, I had massive pain. So all in all the end result is that tapering was definitely the way to go. I am so happy that I changed doctors and did it this way because I feel like so far it has been tolerable.
I did see my doctor last week and told him about the weird aches. When I had the sciatic pain from my last blog, it went on a couple of days to the point where I had to call him. He is a doctor who is against giving anything strong (narcotic wise) and prescribed me steroids. MEH. ROIDS... PASS! I did fill it just on the chance one day I REALLY have to jump on it to avoid a potential hospitalization but F THAT. I won't start a run of steroids till I am really a mess. I told him, and he gets it and said it was okay. Plus I do think I made the right choice since about two days after that my pain went away completely. You know your body better than anyone and your limitations. My opinion, don't ever just listen to a doctor if in your heart of hearts you are against it. No one knows your body better than you.
Any who - since I was feeling better I decided to go shopping in Soho, Manhattan. If you've been you know that requires a lot of walking. Soho is a lot of blocks. I was dead tired by the time I got home and started to feel pain EVERYWHERE. The next day I woke up and I was achy but most of all my toe bones were like pulsating. WTF. My poor little toesies. So weird! I never think of them and yet, they were really bothering me. So strange that this disease reminds you of the muscles and bones you quickly forget you even use. So okay, the usual knee pain, yeah sure. Elbows? Of course they'll ache. But my little piggies - they were feeling the pain. I told the doctor all of this and told me that the pain will come and go but so far with looking me over, the swelling is minimal and I "look good". He told me we have to keep our fingers crossed. These next months are the scary ones. The months where there's not much stopping a flare. Keep calm and STAY OUT OF THE SUN. He also said I can not try for a baby until December if all goes well. Since he hasn't worked with me that long he doesn't know how I should do without my medication BUT since I am continuing to take blood work every month, he will monitor my numbers and try to catch a potential flare before it happens. Just took blood work last night.. I guess time will tell.
The biggest difference I'd say minus the aches is the FATIGUE. Everyone is tired. You work long hours, or you have three small kids, OR you work long hours AND you have three small kids, I mean the reasons for being tired are endless. You can't compare your fatigue to someone else's but you can compare the tired you ONCE were to the tired you are NOW. And I can honestly say, months ago yeah, I would be tired but if I slept a nice 9 hours, I woke up rested. My body always felt better on my medicine in the morning and I had more energy after I woke up. I feel the opposite now. The mornings have become harder for me. I wake up tired. Even if I slept 10 hours, I am still fkn tired. SO ANNOYING. Even walking up the steps sometimes, I am tired. LOL But listen, if tired is what I'll be to have a god willing healthy pregnancy, then bring-it-on. I'll spend my weekends sleeping - doesn't sound bad to me. My number one hobby is watching TV, eating and taking naps. #Judgeme
I will write back when my numbers come in and hopefully they are even better than last time.
Side note: The doctor said it takes about 3 weeks to really clear out of me but 6 months to be safe enough for baby making so I guess that's one more week to really be out and see what it feels like. Excited. TILL THEN ! 😃
I just can not believe it!!! SO, last week I officially have been off the methotrexate. Still taking the Sulfasalazine and the Plaquenil but no methotrexate! And I actually feel okay. I mean, not GREAT, but not TERRIBLE. BUT I will say this, I wasn't always the best with refilling my meds and sometimes I would miss Tuesdays hit of Methotrexate and then not able to take them till about Friday and I WOULD REALLY FEEL IT. My body would like yearn for the hit like a crackhead. So in my mind, those couple of medicine free days was kind of like going cold turkey for the time being. But when that happened, I had massive pain. So all in all the end result is that tapering was definitely the way to go. I am so happy that I changed doctors and did it this way because I feel like so far it has been tolerable.
I did see my doctor last week and told him about the weird aches. When I had the sciatic pain from my last blog, it went on a couple of days to the point where I had to call him. He is a doctor who is against giving anything strong (narcotic wise) and prescribed me steroids. MEH. ROIDS... PASS! I did fill it just on the chance one day I REALLY have to jump on it to avoid a potential hospitalization but F THAT. I won't start a run of steroids till I am really a mess. I told him, and he gets it and said it was okay. Plus I do think I made the right choice since about two days after that my pain went away completely. You know your body better than anyone and your limitations. My opinion, don't ever just listen to a doctor if in your heart of hearts you are against it. No one knows your body better than you.
Any who - since I was feeling better I decided to go shopping in Soho, Manhattan. If you've been you know that requires a lot of walking. Soho is a lot of blocks. I was dead tired by the time I got home and started to feel pain EVERYWHERE. The next day I woke up and I was achy but most of all my toe bones were like pulsating. WTF. My poor little toesies. So weird! I never think of them and yet, they were really bothering me. So strange that this disease reminds you of the muscles and bones you quickly forget you even use. So okay, the usual knee pain, yeah sure. Elbows? Of course they'll ache. But my little piggies - they were feeling the pain. I told the doctor all of this and told me that the pain will come and go but so far with looking me over, the swelling is minimal and I "look good". He told me we have to keep our fingers crossed. These next months are the scary ones. The months where there's not much stopping a flare. Keep calm and STAY OUT OF THE SUN. He also said I can not try for a baby until December if all goes well. Since he hasn't worked with me that long he doesn't know how I should do without my medication BUT since I am continuing to take blood work every month, he will monitor my numbers and try to catch a potential flare before it happens. Just took blood work last night.. I guess time will tell.
The biggest difference I'd say minus the aches is the FATIGUE. Everyone is tired. You work long hours, or you have three small kids, OR you work long hours AND you have three small kids, I mean the reasons for being tired are endless. You can't compare your fatigue to someone else's but you can compare the tired you ONCE were to the tired you are NOW. And I can honestly say, months ago yeah, I would be tired but if I slept a nice 9 hours, I woke up rested. My body always felt better on my medicine in the morning and I had more energy after I woke up. I feel the opposite now. The mornings have become harder for me. I wake up tired. Even if I slept 10 hours, I am still fkn tired. SO ANNOYING. Even walking up the steps sometimes, I am tired. LOL But listen, if tired is what I'll be to have a god willing healthy pregnancy, then bring-it-on. I'll spend my weekends sleeping - doesn't sound bad to me. My number one hobby is watching TV, eating and taking naps. #Judgeme
I will write back when my numbers come in and hopefully they are even better than last time.
Side note: The doctor said it takes about 3 weeks to really clear out of me but 6 months to be safe enough for baby making so I guess that's one more week to really be out and see what it feels like. Excited. TILL THEN ! 😃
Monday, June 26, 2017
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!
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!
Tuesday, June 13, 2017
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
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
Tuesday, May 30, 2017
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!
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!
Wednesday, May 24, 2017
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
Thursday, May 18, 2017
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
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
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