Category: Medical

Since I last wrote, more stuff has happened.  I started the Tyvaso and two weeks ago I finally got approved and started Eliquis.

Now, I am not going to lie to you.  This has not been easy.  The Tyvaso is a whole production every day, 4 times a day.  The Eliquis, just a pill.  Here is a link to a video of Monique demonstrating the equipment for the Tyvaso.  https://www.youtube.com/watch?v=gJlQp4V2lmA&t=55s

First Question after doing this for 6 weeks… Is the Tyvaso helping?

Well.  I believe so.  In the last week, I have been able to get to the car in under 20 minutes.  I can go up the stairs three at a time before stopping and catching my breath.  Unfortunately, bending over or any exertion requiring bending has not gotten better.    Some days even when my oxygen is at 90 or above, I still feel like I am gasping for air.  Other days, I am down to 85% and I feel fine.  No clue other than supposedly this can happen.

I have had some reactions to the Tyvaso.  I started wheezing more on Level 1.  Level 3 had me coughing more – added pro air inhaler to help.  Level 4 brought really bad headaches – Tylenol with half a cup of strong coffee to knock those out (it works).  Level 5 brought tight chest and achiness in chest.  So, it was dialed back to level 4 and doing  a slower increase.   Since it is taken 4 times a day, the amount of inhales you do can be adjusted.  I was at 5,5,5,4 over the weekend.  I graduated to 5,5,5,5 all the way across the day.  5 inhales first thing in the morning, 5 around 10 am, 5 around 2 pm and now 5 around 6 pm.

I was taking the last inhaling process closer to 7 and 8 pm, but somehow it interfered with my sleep.  Since I have had to get up early to start my medication routine (and now i get dressed slowly due to fighting to breath), staying up late is not an option.

There is a nurse assigned to you to be there when you progress up to next set in inhalations.  I am guessing they are there to make sure there is no immediate reaction to the next level of the medication.  (I feel like i am sounding like a gamer.)  They take your blood pressure three times during an hour.  Then see you when you are scheduled to go up again.

Right now I am on hold.  I need to get my lungs and heart used to this higher level.

My biggest gain has been to get off of Warfarin.  What a problematic drug.  It did what it needed to do, but there are just so many restrictions and side effects, it was making me miserable.  Then getting labs every week.  I can tell you now, I DO NOT miss that.

I still have anxiety attacks.  That is due to the lower oxygen level at the time.  Sometimes it has to do with being enclosed.  Taking a bath and shower are still a challenge.  But, I force myself.  No one wants me to be stinky.  Especially with all these medications.  Who knows what I would smell like?  I do make sure that there is someone close by physcially in the event I need assistance.

Some little tidbits I learned recently..

Did you know your blood pressure falls when you urinate or poop?  Tyvaso also lowers your blood pressure for about 30 minutes.  Lesson learned…go pee before taking medication.

Eliquis still has some same restrictions as Warfarin.  Don’t eat anything dark green, leafy green or anything green.  Be aware of fruit high in Vitamin K.  It can increase the affect of the Eliquis causing bleeding problems.

Things I used to take for granted:

Laughing, crying, drinking cold liquids, icecream, eating in general, going for a walk, going out to eat,  sleeping more than 4 hours, breezes, getting dressed in under 5 minutes.

So many things I either miss or wish I could still do.  I am still able to work.  Some days are good, some days are bad.

Traveling is out of the picture.  Being on continuous oxygen poses a real problem for that.

I still hope to get the lung transplant.  I am currently unable to get a hold of the coordinator for that.

In the mean time, everyday that I wake up is another day God can use me to His Glory.

 

Dr. wants a new pulmonary funtion test and echocardiogram to see if the Tyvaso and Eliquis are doing their job.

 

 

I have waited a while to let all of you know what has been going on since my last article.

I was given Warfarin to take until Eliquis can get approved.  6 weeks later and I finally got the Tyvaso the Dr. requested.  Still trying to get the Eliquis approved.  The Warfarin has a lot of side effects with it.  Of course, I am experiencing a lot of them.

Nothing makes me happier(not) than having to go get labs once a week for 1 vial of blood.  My INR (the level of something in my blood that has to do with clotting) has been either too high or too low.  6 weeks on this medication and we still can’t find the right combination of doseage to get it “in the sweet spot” or therapuetic level.

Then I found out the Tyvaso’s cost is astronimical.  I am okay this year.  But next year might be another whole issue.  I have to believe God will have something different in place to handle this or the transplant done.

Additionally, a special nurse has to come out to train me to take this medication.  It has two sets of everything.  I don’t even know where I am going to keep the set-up, medication and devices that are required.  On top of all that, I have to lug this equipment to work because the medication is to be taken every 4-5 hours.  Well, that is at least once during the work time or even twice.

I might be overthinking this.  If the medication does what it is supposed to do, then the anxiety about lugging it around will not be an issue.

Back to the next reality.  I had a great talk with my doctor yesterday.  I called her since my lab results were in.  But, I wanted to let her know that I was feeling worse again (similar symptoms to when I went in the hospital).  {I had briefly gotten a bit better.  Going down or  stairs seemed easier.  Getting to the car seemed easier.  I had more energy.  I didn’t desaturate as fast.}  The Warfarin is causing more petechiae (red dots on skin).   Additionally, I am desaturating fast again and taking longer to return to normal oxygen rate.  The restless legs at night is preventing good sleep.  My legs are swelling during the day and I had a terrible pain in my left leg the other day without any injury.  Bottom line, she thinks I am throwing off more clots (pain in leg) and need a diuretic along with an ultrasound of my veins in my legs.  More tests!  It is for my own good though.

Now, I am having a problem getting my medications from the local pharmacy.  I understand that all these winter storms are causing disruptions, but never have I had to wait more than 48 hours for a script.  I am on 6 days now for one that was supposed to come in Tuesday.  I was able to beg for a partial release.  I am down to 1 pill.  (Pharmacy wouldn’t let me fill it at 2 weeks.☹)

Then comes the family issues.  Even though I am home all the time, I wish I wasn’t.  Sometimes the negativity of it all gets to me.  I am able to escape to a relative’s house on the weekend.   They actually bought an oxygen concentrator just for me to spend the weekends with them.  With me being home, there are expectations that I can still cook, clean and do normal things.  Crap!! It takes me 30 minutes to just get dressed in the morning and they want me to stand and cook a full meal!  I don’t think so.  I have asked a family member that is in the house to help with the basics, that sometimes works.

I just don’t know.  I might have to hire help.  But, then I run into my husband’s social anxiety issue of having strangers in the house helping.

Doing simple things have become hard.  Walking to the kitchen to get a glass of tea, going to the bathroom, taking a bath or shower, getting dressed, pulling receipts for filing and  sometimes even eating is difficult.   These are just a few things I can think of.   Sometimes it is your family that don’t really understand what is going on.  On the outside, I just look like I lost a bunch of weight.  But on the inside, I am falling apart.

I give it all to God.  I have one more day before I return to my work schedule.  During this time, I will have at least a few days to work with the new medication.  I am really asking God for each breath, each minute of every day.  I have no other way to make it.  I am struggling not to laugh, that takes away my oxygen.  I am struggling not to cry, that takes away my oxygen.  I am struggling not to get mad, that takes away my oxygen.  It is really hard to stay even keeled.  I lost my cool the other day and started yelling at someone, next thing you know I was struggling to breath, my hands and feet turned purple, and I lost my voice.  So not worth it.

So, unto God I give it all.  May He comfort me and keep me calm.

Update time-

So, since I last told you about my adventure with this chest cold, I finally got in to see the Pulmonologist the day after Thanksgiving.  Ended up going on 10 days of a broad spectrum antibiotic and nebulizer twice a day.

Spent two weeks coughing up wonderfully grosse stuff.  But, I am still trapped into using oxygen for almost everything.   The coughing is finally dryer, but I am still struggling to breathe.  I even started having anxiety attacks going up the stairs from the car.

After having to sleep with oxygen for over a week now, which I have not needed in 5 years, I begged the Pulmonologist for more steriods and nebulizer medication.  Dr. wants me to get a lung transplant.

Been on it three days now, still waiting for improvement.  I know that getting better takes time.

I feel worse now than when I was first being diagnosed with MCTD.  At that point in time I was under a lot of stress.  Here we are again with me feeling horrible.  What are the extenuating factors:

• Stress from lack of assistance at work, having to cover other jobs
• Stress due to family emergency regarding immediate family member
• Stress from holidays and being caught unprepared

So, besides being physically ill, there is a strong mental component.

I am spending the next two weeks redoing tests at the hospital to see if I am in a flare or declining severely fast.  After that will be another Dr. appointment.

I will let you know what happens.

Either way, this has kept me in constant prayer with God.  I thank him for every breath.

 

You have all heard the saying, “You never know what you have until you lose it.”    I previously wrote about getting off of prednisone and on to an anti-anxiety medication.  The anti-anxiety medication has been a big help with the pain.  I did not really know how much pain I was in until I stopped having it.  Well, there has been a development since then.

Every year I do what is called a PFT.  Pulmonary Function Test.  This includes breathing in various ways (panting, holding breath, exhaling fast, etc.) into a machine, then walking for various times while wearing an oxygen monitor to see where you desaturate.  I make sure to have this done during the summer and after a good night’s rest.  Even with all my care, the test showed a decline this year bigger than the previous years.

So…what does that all mean?  Going off the prednisone was a no brainer for my bone health.  I am fragile enough without worrying about breaking a hip.  The consequence of that (I believe) is that my lung function decreased.  The doctor always tells me that the decrease is within the “margin of error”.  But, doing the math,  if 2 years ago I went down 1%, then last year another 1% and this year 3%, that is a 5% decrease.  That is outside the margin of error.  Additionally, my coughing fits have not gotten more frequent, but more violent.

Could these changes be due to removing the prednisone?  The doctor said no, I don’t really believe him.  It was just too coincidental.  In the meantime, during the next 6 months, I am to use an inhaled steroid to try to regain some function back.  I am only a couple of days into this new medication.  Let’s see what happens.

This could be the natural progression of my condition.  I would like to think that it can be slowed or stopped.  Reality check!!!

Ultimately, it is up to God as to what happens with my lungs.  I am not giving up.  I know He has something more for me to do.

In the mean time, I have made it my personal goal to have positive energy time in the morning.  I read my Bible, crochet and play with the dog for an hour after breakfast before I do anything else for the day.  So far, it is helping.

 

Celebrate with me!!!

I am happy to announce that I have been off prednisone for a month now.  It was a long journey to get off it.  Unfortunately, due to the start of bone loss and a predisposition to getting osteoporosis, the doctors agreed that it had to be done.

Some of you may think this was not a big deal.  It was.  I never understood withdrawal symptoms until trying to wean off the prednisone.  Most people can do it in a couple of months. It took me over a year.   My system is just so sensitive to any medication changes.

Also, did you know that some anti-anxiety meds help with pain?  I had heard that.   After considerable painful flares of fibromyalgia this last year, the rheumatologist and I decided to give a particular one a try.  I will tell you that I waited until I was completely off prednisone until starting the new medication.  I did not want to get confused over what was withdrawal symptoms versus side effects from the new medication.

The good news is that after three weeks of being on the new medication (anti-anxiety), I have barely had to use my heating pad in the evenings.  I feel much better overall.  I did not realize how much pain I was in until it went away.  No wonder I had problems with brain fog and focusing.  My body was on pain overload, and I was oblivious to it.  I did experience a few side effects the first week.  I had to figure when the best time to take the medication and with or without food.

I would like you to understand that I am not a doctor or medical professional. I am sharing these experiences with you so that you may understand yourself and know you are not alone.

I have not used the exact name of the drug or described the side effects because everyone is different.

May God guide you to a physician who will help you find a better normal.

I am not a doctor.  I am only sharing with you what I have found to work for me.

One of the things I find interesting is that many people are on a gluten-free diet to keep the weight off.  I will admit that is one of the benefits.  Taking out all processed grains that contain gluten do limit your diet selections.  You can kiss those donuts, cookies, cakes, bagels, breads, crackers, and  pastas good bye.   Now, I do know that there are some replacements.  Honestly, they aren’t that good (unless you like sandy hay).

Then comes the question, has this really helped me with all my conditions.  Honestly, I believe so.  If I do have something with gluten, I pay for it a day later or earlier.  I could have digestive issues.  Usually it manifests itself as tingling lips (the immediate reaction) or a rash (delayed- sometimes up to a day).

So, in the interest of finding out if there was any research about it, I ran across an article in Everyday Health by Carol Eustice.  Here is the link.

https://www.everydayhealth.com/rheumatoid-arthritis/diet/gluten-free-diet-helpful-managing-rheumatoid-arthritis-symptoms/?slot=1&eh_uid=80668719&xid=nl_EHNLra_2022-01-16_26384589&utm_source=Newsletters&nl_key=nl_living_with_rheumatoidarthritis&utm_content=2022-01-16&utm_campaign=Living_With_Rheumatoid_Arthritis

I have had such success with my conditions with avoiding gluten, I was a bit surprised about the lack of evidence.  Take a minute and read the article I have put above.

Personally, it has been one of the best things I have done.  Now, understand that I do not have Celiac disease, but I am allergic to wheat and I have tested positive to being gluten intolerant.

The article mentions about needing additional supplements when you go gluten-free.  Since I have always had such a limited diet, I didn’t really need to add anything new to my supplement list.

Changing to gluten- free was just the beginning of my diet changes.  God has led me to using paleo diet guidelines and now He added Low-FODMAP.  My diet has become extremely restricted.  But, I feel better.

All I can say, when dealing with illness diagnoses of Lupus, Sjogren’s, RA, OA, GERD, and so on, please do your own research.  Try different diets that help with inflammation reduction.  Adjust your eating to keep you functioning.  Invest in good vitamin supplements to help with any deficits.  Again, do your research to make sure that the vitamins do not interfere with your medications.

May God keep you healthy.

Happy June!!

Finally the end of the school year is near.  The last six weeks have been quite interesting.  From depression to elation, I have survived it all.

I wanted to focus on a positive that is happening.  After having my labs be in the green range for almost everything for over a year and a half, it has been agreed that I should start weaning off of the daily prednisone that I take.  This is to help prevent osteoporosis.  So….the rheumatologist and I came up with a plan.  Slowly convert down to the next level, re-evaluate once I am there, and then maybe start to go all the way off or go down one more level.

Well, about four weeks into the first part of the plan, I ran into a new problem.  I got to the point that I was taking 4 days of prednisone at a lower amount and 3 days at the original amount.  I started spotting about every other day.  I contacted the rheumatologist and my gynecologist.  Rheumatologist said to stop reducing medication any further.  Just keep it stable.  Then suggested I see the gynecologist.  I already had.

Now, speculation…… I am not a doctor.  I believe the spotting is due to the fact that I am reducing my steroid level down and my body reacted.  It has been 18 months since my last period and my endometrial lining could just be thinning because of this medication change.

Gynecologist did an exam and ultrasound.  My lining is thick for being in menopause.  Then a biopsy was needed.  I hope I don’t have to go through that again.  The procedure was not bad.  It seems to be the medication that made me more ill.  Now I am just waiting on the biopsy results.

(This is twice now that medication for a procedure has made me more sick than the procedure itself.  I will have to question my specialists about this.)

In the mean time, I am keeping my prednisone the same.  Four days a week I am at the lower dose and three the higher dose.  I had to put up a chart on my kitchen cupboard to keep track of which day I am to take what.  Some days it gets very confusing.

Somehow I know God has a plan for this.  I am still here.

Medical disclaimer:  I am not a doctor.  I am an autoimmune sufferer.

 

I recently had another barrage of labs.  This included my regular and my annual for the endocrinologist.  I keep track of them on a spreadsheet.  I also happen to use the graph results from the lab company that posts my results.  I have known that a couple of my labs seem to roller coaster.  Upon further examination, I noticed another trend.   They seem to be consistent with my flares.  Even though the flares are not as bad as when I was first diagnosed, it is evident.

I will have a high inflammation one lab, the next be in normal, then again a high number.  So, labs are about 6 weeks apart.  That means at least once a quarter I am in a flare.

 

Now, more news on that front.  How to tell the flares apart….

I am starting to notice the subtle differences between the flare symptoms.

If I am achy, feel tingling feet/hands and experience restless legs; that is my fibromyalgia.

Achy joints that are relieved by heat.  Hello Mr. Arthritis.

Excessive dry skin, fatigue and coughing is the Sjogren’s.

Funky rashes and fatigue are Mrs. Lupus.

I have been lucky not to have an war of multiple at once like 6 years ago.  I was just a hot mess then.

Most of my extreme symptoms are being managed by my medication, vitamin and complimentary therapies.

Thank you God for the medication, plants, masseuses, and music.

Every day I open my eyes, I am grateful to see another day.  I tell myself that I am to make a difference in the world today.  God is not done with me yet.

My morning Mantra:

I am breathing.  My medication is working.  Today is going to be a great day.

 

May you find your labs revealing as to how your body works.

 

Thank you to Pinterest for this beautiful inspirational picture.

I will be the first one to admit that maybe staying home to avoid Covid was good for me.  My doctors have stated that my labs have been the best ever.

Endocrinologist even stated that when he met me 6 years ago my adrenal glands and hypothalamus had shut down.  They are now both functioning after 5 years.

Let me be honest. This has been 5 years of trying different vitamins, adjusting food intakes, dietary accommodations and re-arranging my life down to every day, hour and minute.  If something made me feel bad, try doing less, not doing it or finding an alternative.  This applied to food, exercise, errands, sleep, pillows, equipment, ADA accommodations and clothing.

If you have been recently diagnosed with an auto immune condition, please do the following….

1.  Educate yourself.  Find out how it affects you physically and mentally.
2.  Try different therapies.  I added complimentary therapies, changed diet, yoga and massage in addition to my medications.
3.  Do communicate with the Doctor(s) about ANY side effects of the medications that may be prescribed.
4.  Stay in communication regularly with the Doctor(s) about any new symptoms.
5.   Keep a journal for at least the first year.  Log how you feel each day, what you eat and exercise.  It helps you find a correlation between symptoms  and reactions to daily activities.
6.  File for ADA accommodations at your work.  JAN network is a great resource.  Your company may have a disability office to do this with.
7.   Realize that your life will never be “normal”.  It will always be different each and every day.  Thank God every morning you open your eyes whether you are suffering or not.
8.   Remember that it is okay to ask for help.  It is also okay to stretch yourself to stay active.

Most of all, start your day of with God.  Read the Bible, pray and meditate.  Know that when He limits you, there is a better purpose ahead.

I know that this journey is not even close to being done.