Ok so today is October 19, 2017.  I have been thinking of starting a pen and paper thingy of my journey with Sjogrens, however, I keep hearing my daughter tell me to write in on here, so here I go again, attempting this word press site.  I am thinking I’ll learn it if I spend more time with it.

Today, I feel great, my throat is a little dry, I have to get my humidifier out soon as the air is getting cooler, and more dry.  I also only have electric heat so that’s not a good thing either.

Yesterday I took my 8 pill of methotrexate (2.5mg each) which I take once a week and is given a 30 day supply then do a blood test to check my levels, so far so good on the tests.  Also every morning I take1 Folic Acid (1mg) along with 1 Hydroxychlor (200mg) and every evening I take 1 Hydroxychlor (200 mg).  That’s a lot of darn pills for someone who thought she’d never be on any type of medicine and mindful that she never thought she’d be on pills for the rest of her life (yes me). It was tramatizing for me when I learned this but still have going to see about weaning myself off this and look at more natural remedies, but hey, breathing is a necessity to me 🙂  Prior to being on pills, which I”ve been on now since February 2016.  Since taking these pills, I can breathe easier, I haven’t really had any mucus build up and not having to wake up fearing if I was going to die due to not being able to breath @ 3AM.It was pretty scarey for me a few times, being awake at 3AM feeling a tightness in my throat, then having to get up and steam the mucus free.  I also have dry eyes, my throat gets dry and every now and then my body used to ache, but all symptoms I could handle.  yesterday and the few days prior, my body was hurting, I was waking up a few times a night hurting but I refused to take anything for the hurt.  I’ve always been a believer that my body can fix itself without the help of  pills and have always refused Tylenol, Ibuprofin and all that other stuff they say will help, instead I try the mind over matter Path and get myself in a quiet place even for 15 minutes or whatever I can get and work on myself that way, meditation along with mind over matter techniques to help get beyond the issue is something I’ve done for a while.  When my son Michael was about 5 (he is now 32)and he had a migraine, my baby was sick!  I talked with him, he was on the couch and I told him of mind over matter and how I do it.  I asked him to try.  I also had my hand on his head (little did I know I was doing Reiki on him as well- I never even heard of the word at that time).  My son,  by the next day after sleeping said he felt better. That afternoon, he was feeling a little sick again, so he laid on the couch and he tried the mind over matter again and he said “MOM IT WORKS!”  I”ll remember that day always.  As far as I know my son has not had a migraine since that day and I’m assuming he still does the mind over matter.  I”ll have to ask him.

Anyway back to my Sjogren’s blog. Since I’ve been on pills (February 2016) my activity level has gone to minus zero!  I fear I’ve turned into a couch potato or a chair potato and a workaholic!  So being I’m home for a few days, I’ve decided to watch my food intake and start walking.  I have been trying to walk at least half a mile this week, I missed a day or 2 but onward I go!.  I have gained about 30 pounds since February 2016 so its’ time to back on some kind of fitness journey as well.

Info on my pills are the plaquinel and folic acid run me about 75 every 3 months and the methotrexate costs me about 11 bux every month, this is with my blue cross and blue shield plan from work.  I’m getting close to retiring within 10 years or so at least, then I’ll have to move my health care to IHS on the Rez as there won’t be a way for me to pay 500 + every 3 months and 100 a month for my other meds for sjogrens..

One thing I’ve read was that people with sjogren’s are supposed to take it easy and not tire themselves out, that is something I’m going to have to work on as I don’t know how to relax for too long 😀

Today I feel pretty good,  I have my daughter Chele, my grandbaby Cal and Deztiny home, the sun is shining and it feels good to just rest and relax.

Have a good day Everyone!

 

 

It’s not only sjogrens but now soblottic stenosis (I just learned how to say it give me a few before I can spell it correctly 🙂

So I guess now I have sublottic Stenosis which is also known as narrowing of 
the wind pipes or airways. So now Sjogrens has taken a back seat to being 
able to breathe properly.  I do have trouble breathing and quiet often talking 
and also talking and breathing at the same time.. GAWWWWD! it sucks majorly. Ok s
so now that I know or am guessing the reason for not being able to breathe is that my
wind pipes or airway is somewhat narrower than the average person.  This has caused
me to be total sedentary, I've gained an awful lot of weight, so I need to set
a plan for myself to move and yet breathe.

I'm doing this blog for anyone who may have the same and just seeing what I go through
IN November 2016 I was working in Minneapolis, Minnesota (away from my regular duty
station) for the month of November. I was holed up in a hotel room, the room was dry,
I tried putting water on the stove for moisture, but the heat won! and by the time
I got back home after thanksgiving, I was having a difficult time breathing and 
speaking, thank god I had some time off coming to me of which I was hoping to
recouperate.  I didn't! I thought I"d be able to fight it off myself, but eventually 
in December I went to the Emergency room and was given prednisone as the Doc said it
appeared I was trying to fight it off by myself and nothing was working, good old 
prednisone worked until I was done with the dosage, prior to that my dentist gave me
antibiotics as I have a tooth that needs a root canal and he wanted to eliminate any in
infection I had, I don't think it worked and I thought for sure that the antibiotics wou
would help as they've done in the past, althoughI was now getting worried that I was taking
too many things and my body would become immune to the antibiotics and prednisone if 
it can so I didn't want to take it anymore than I had to.  needless to say, the antibiotics
didn't phase anything too much, not even the tooth.  then the ER visit, predinose, the dangerous
but miracle drug helped me breathe.. .. ahh!! don't ever take breathing for granted
lol.. smokers I envy you for breathing so well! and when I see a smoker I think
how can they do that to their lungs and the ability to breathe! it kind of sucks! lol
Anyway moving forward..Christmas shopping was somewhat of a chore even if I didn't 
say anything to my daughter, I had to make xmas good for my kids and grand babies.  
I think I succeeded haha.. it broke me but it was a good xmas, now to plan for next 
even better.
anyway, today is January 8, 2017 and I am breathing better than I have had beensince
November 2016. I had to steam tonight tho.  I have also joined a group in facebook
for sublottic stenois, I cried when I first found them and read until I couldn't read 
any longer, woke at 4 am and read some more and again at 7am.  I was overwhelmed that 
I wasn't alone in my struggle!I posted my gratitude and have never felt so welcomed
anywhere.. I love these people and I don't even know them, there were a lot of 
them from Minnesota however. from November to December or now I was out of breath,
while walking and I used to be able to walk 3 miles without gasping for breath jus
a year ago, which lead to the weight gain.today as I cannot walk well it's awfully cold too
haha.. -20 below tonight so I guess that would go against anyone trtying to walk.
This group of people onface book have had surgery which made me feel better as now I know
that If I get worse that there are temporary solutions, some have had surgery 
every 6 months, some 3 years to open their airways.   I was starting to think that
there would be atime when I was old and not able to cough this mucus up and it would
choke me, who knows maybe that's my demise, I don't know yet but also I found out
that dairy products which I somewhat already knew are a no no for someone who has
this stenosis.. as dairy causes mucus, I've also found out that and confirmed that
caffeine is a no no.. well I need a boost in the morning otherwise I am no good 
for nothing. In my job I need to be on my toes from the time I get there and 
being tired (maybe sjogrens?) isn't a good thing.  I've also found that Sjogrens
is on the approved SSDI list of disabilities.. acck!! who would have ever thought
that I'd be eligible for a disability.. not yet anyway lol, I want to work another
10 years or so until I get my grandbaby fully on her feet, daughter on hers then I
think about retiring.  My job also requires me to do a lot of talking which has been
somewhat embarrassing to me at times as I can't. but hopefully as I be mindful of what
goes into my mouth aka dairy or non dairy then I can eliminate or at least downplay
the symptoms
so sometimes prior to tonight I used to get up at 3AM and having a tightness in my throat, lungs
I'd have to keep myself calm, start my water on the stove for steam,keep calm as I
think If I paniced I could do some real harm to myself such as have a heart attack
so I remain calm.  If I were in trouble I'd wake my daughter and tell her call the
ambulance but fortunately that hasn't happened except in 2008.
so todays a good day, I can breathe I can talk, tomorrow I'm starting the elliptical
for exercise.. 
I've coughed up some sticky hard mucus at times, cleared my thought real hard and 
when in my car, I'd scream using more effort in my vocal areas and throat to clear 
all that crap out.  I don't know how far my stenosis is but I do have an appointment
with my regular doctor .. Dr. Quamme and we'll see what he says.  I do think for the
most part for me, I am not as bad as some are with this stenosis thank you Creator
for that!. Yesterday I went for my labwork to keep up with the Methortrexate, I am over
due by a week of not taking it so maybe I don't need it anymore.. I mean really why
take something if you don't really need to right?  but on the other hand, I believe
methortrexate and plaquinel has helped me stay good from March to November which prior
to that,I was having  bad episodes like every month or 2.. so this is going to be my diary
in a way regarding my sjogrens and stenosis.. it's time for bed.. good night, sleep
well and happy dreams to all.. Love ya..

Wednesday December 21, 2016 Evening blog

 

Sitting here listening to the  Bee Gee’s, overall their history to me is pretty interesting.  Music the therapy of all therapies!.  I’ll try and summarize the past 14  years the best I can without sounding like a broken record, I earlier said 5 years ago but remembered I was in my late 40’s (i’ll find exact times) ‘s at the time of diagnosis.   Prior to being diagnosed officially 8 years ago which would have made me 37-46 years or so old. I was at that time a few years prior, experiencing dry throat, occasionally my glands would swell up on the sides of my face, moreso on my left side, it was a good thing my hair is long I was able to conceal the swellingness.  The dryness continued for a few years then I started losing my voice as I was trying to “cough up” what was a feeling of clogging my throat, how it feels when you have a cold and you are having sinuses build up in your throat area and to cough all that mucus out is the feeling best I can describe it. Well there usually wasn’t any mucus coming up and the more I coughed the more my throat became agitated and hoarse.  I tried my best to hide it at work but having worked very close in perimeter to people it was obvious something was wrong.  I do a lot of telephone calls in my work either taking or making working with clients from through out the United States and other countries included.  I remember talking to an elderly man and his wife who were in Canada, they worked closely with me to get their case completed and there were many phone calls made, towards the end of the research portion, the gentleman said “you know we’ve been talking now for almost 3 years and all through those 3 years you’ve had a constant cold”  I said yes I just can’t seem to shake it.  He advised me to see a Dr. I reassured him I would.  He and his wife surprised me at work one day, having driven from Canada to meet me and express gratitude of getting their case completed.  Again they said to see a Dr.  I said yes.  This was an example of at least 4 other occasions of where I had continuous phone calls with families, all saying I’ve had my cold for a long time. through this time up until I finally went to the Dr.  The reason I did go to the Dr was that I was taken from my house a few days before Xmas on a stretcher and in an ambulance because I couldn’t breathe and I believe I lost consciousness until the coldness of the air I hear maybe shocked me and from what I am hearing I was gasping loud to get my breath back. I do not remember any of this.  I had eaten some saltine crackers and drank a can of coke, shortly after that I noticed It felt like my throat was tightening up, from experience I knew that If I could inhale some steam it would help.. Not this time! I tried and wasn’t able to talk to tell my daughter I couldn’t breathe but I maintained calmness and motioned for her to call 911.  I waited, watching the ambulance ride by looking for my house finally after what seemed like hours I felt a hand on my back and that’s when I fell, I couldn’t hold myself up any longer, I did manage to toss my daughter some money I had on me in the case she would need it.  At the hospital, the Doctor’s didn’t know what was wrong, they ultimately sent me to Bemidji Hospital to see a rheumatism Dr. he was Dr. Haggerty (spelling) who did many blood tests on me, throat swabs, sent me to North Dakota to have a biopsy done on my throat and ultimately seen a Mayo Specialist Dr. Marian who conducted a test by putting a tube with a camera down my throat to see if they could see anything, he did see white “stuff” he said around my vocal chords.  Nothing further from him, he and I didn’t get along too well.  The biopsy came back normal.  Dr. Haggarty got the results of the blood work back and said I had a gene for Sjogrens.. WTF is that??? In my mind I was too cool to have a disease of anything!! I didn’t understand.  He put me on plaqunil and salagin and started me with prednisone, GOD I loved that prednisone until I did my research! The plaquinel gave me bad headaches and I quit taking them all saying I could heal myself.  I tried herbal remedies, Mind over matter, many hours of reseach on the internet, ancient Chinese medicines, native medicines, you name it, I tried it.   What helped me was steam!  but it didn’t take the cough away.  Dr Haggerty also gave me a flu shot and a pneumonia shot I think it was called, I’ll correct it if I find it was different, he said I was to get a flu shot each year. ( I still didn’t get one form 2016).   Anyway as I said, I quit it all and tried to cure myself.  Until February 2016 I couldn’t take it any longer, my pattern was to have an episode of coughing and not being able to talk or breath for about 4 weeks of which it would go away just enough to be bareable. I still was trying to clear my throat causing irritation.Occasionally I went in to the hospital and I was put on antibiotics and prednisone which did the trick until the next episode which was due 30-45 days after the last one.  So in February 2016 I was sick of feeling sick and made an appointment, this time with Dr Nassr Raward @ Bemidji.  He took more bloodwork and reconfirmed sjogrens.He put me on prednisone to start with as well as Hydroxychlor @ 200 MG 2 times a day, Folic Acid @ 1 MG once a day,  and Methotrexate 2.5 mg 6 tablets once a week.   For the first 3 months, once a week I was taking 16 pills (he started out with a higher dose of which he later downsized).  So today I am on the Hydroxychlo 2 times a day, folic acid 1 time a day and methotrexate once a week.  During this 2nd diagnosis I was depressed, literally as I couldn’t understand why this happened to me, I was planning to live to be at least 99 years old, it seemed with the meds my taste buds were taking icky oils, rubber burnt things and occasionally my smell was smelling everything within 20 miles, GROSS!! this made my stomache  upset, gave me headaches but I continued with the meds and soon my symptoms eased up! I haven’t had an episode since February 2016 and now in November 2016 I had started one which is why prednisone again.  I can now tell when my body is being attacked as I am extremely tired, I get dark circles under my eyes, the skin on my hands look like skin and bones only and my face gets chalky.   My chest feels dry, my eyes get red from dryness every muscle in my body seems to ache when this happens.  in Other words, I feel like CHYT! so in a nutshell this is how I’ve come about and the beginning of my experience with SJOGRENS~!  I also have Anka Vasculities as my 2ndary part of SJOGRENS.  I read that with sjogrens there is also another diagnosis that comes along with it.  After I got over the initial shock of having to live with this for the rest of my life and having to take pills for the rest of my life which to me was devastating, there were many nights I went and cried while driving, these were my weak times and believe me during this time I was weak more times than strong.  I guess I put up a good front as no one seemed to notice lol. I did tell my daughter a little but not the whole of it, I didn’t want to sound like a big complaining baby because as the single mother, I am to be the strong one, the strong person who knows how to handle it all or so in my mind I am to be.

So that’s my nutshell story so far 🙂 as I continue with the blog, I’ll document what is going on with me and what I do to alleviate or remedy the situation.  I am also hearing this is a hereditary disease of which I am hoping it will bypass my children and grandbabies and great grandbabies etc.. to come.

These days I try and stay positive about it, it changed my outlook on different things I do have to say that..

 

With that.. have a good night, sleep well, peaceful happy dreams.. I’ll keep in touch.. Love you my children.. grandbabies!