Category: Health

Okay, I know you are going to ask my why I didn’t wait until nothing is going on in my life.  Life does not work that way.  My life is always under change and there is never a perfect time to adjust something.

That being said……

I did use the steroid eye drops the first day I tried the Restasis.  All I can say is WOW.  I have barely used additional tear drops  at all.  The second day I used it without the steroids.  It did not burn.  In fact, it was almost smoothing.  I will be honest though, there is a like a dull ache now, but not consistent.  It has been a week and I have only used fake tears a couple of times.  Mostly due to allergies.

But, after speaking with endocrinologist last week, I have decided to go down another step in my prednisone.  I am at 2.5 now.  This is the last step before going completely off.  Next Tuesday, my husband has labs at the VA and Quest is just across the street.  So, I told him I would fast with him and go get my labs for the endo.

Usually, when I have stepped down a level in the prednisone, it has been pretty consistent.  1 st week – I am fine.  2nd and 3rd – lots of extra coughing attacks.  4-6th, body slowly calms down.  I have been at 5 mg  for over 10 weeks now.  I should have been off.  My body did not calm down until last week.  Maybe it was the time change, I don’t know.  Last week was a good coughing week.

Here it is day 2 with the step down and I have chills, exhaustion, diarrhea, nausea and the ucks along with coughing attacks.  I did not expect the withdrawals symptoms to be so dramatic or so early this time around in the process.  The endo. was concerned over my adrenal glands not responding.   This is a real concern with the early signs of drama on my body.  I hope I can hold out until Tuesday.  He said that once he gets the results, he will advise me as to whether I need to go back up or continue to get off.  Optimally, getting off would be good.   But 5 mg a day will not hurt me as long as I monitor my health aggressively.  He did advise me to up the B-12 dose during the first two weeks to help with the stress.

At the 25th anniversary of church this weekend, people who haven’t seen me in a while commented on how healthy and good I looked.  I told them that is the problem with what I have.  Looks are deceiving.  I did take my portable oxygenator with me and I did use it during service.  There was just too many colognes flying in the air.

Overall, I am feeling pretty good.  I have lots of labs to get done in the next four weeks before I return to the pulmonologist.  Let’s see if it will happen.  I think I will go for the echo cardiogram on Friday.

Either way, whether my health is good, poor or down right ugly.  God has allowed me to continue to work and wake up everyday.  So, everyday has been a good, no matter what happened during it.

Okay,  I have done another round of doctor visits.  The ophthalmologist last week and the endocrinologist today.

Going to the ophthalmologist is necessary if you have MCTD.  Any one of the autoimmune disorders can affect your vision.  So, I allowed my eyes to be flashed at (peripheral test), photo graphed (nerve check), poked (eye pressure) and dilated to the point I thought I was going to vomit (first time I have ever gotten nauseous from dilation – Dr. let me know that this is normal).  After all that was done with a healthy “Your eyes are doing great”, we discussed the dry eye issue.

I have had to use eye drops more than normal lately.  We have discussed for the last four years to start Restasis or do the little eye lozenge things.  After going around about comfort and long-term prognosis for my overall health.  It was agreed it was time.  The money spent on eye lubricants would equal approximately the co-pay for the new drug.  I am to administer it twice a day.  Personally, I might only try it once  a day to see how my eyes react.

The script also came with a suggestion of using an eye steroid drop to help with the pain for the first couple of weeks.  PAIN!  Yes, pain.  Supposedly the restasis eye drops can sting a lot.  It was suggested I put in the steroid drops 10 minutes before the restasis.  I figured out that I could put in the steroid drops after my allergy eye drops, do yoga (10 minute morning stretch session) and then do the other eye drops after when I put my makeup on.

It has occurred to me that putting my makeup on after these drops may be a challenge if it stings so much I can’t see the mirror.  I guess I will find out in the morning.

So, here I am adding another immune therapy to my regimen that must be done in 12 hour intervals.  I already have daily timers for my other meds.  I guess I can double this one up also.

So, is this a sign of deterioration?  I really don’t know.  Considering my eyes are doing wonderful and they aren’t any where near the severity of others, I think it is just a flare up of my condition.  Then again, I am getting older.  mucus secretions naturally start to wane.  Also, I may have really needed this five years ago when I went to him with my first symptoms.  We both brushed it off as allergy eyes.  Guess, looking back now, it was just another symptom of a much deeper health issue.  Either way, the eye drops for allergies, the restasis and steroids are here to stay.  Some days are better than others.

Like today.  I had a good eye day today.  I only put fake tears in once at work.  Then again it rained last night.  Clean air has that effect on eyes.

Either way, I am at peace with this decision to add the eye drops.  This is just part of God’s story for me.

P.S.  The endocrinologist was pleased with my weight loss.  We discussed my B-12 treatment and maybe a future tweak for it.  Other than that, my labs look great and he was pleased with mental attitude and communication regarding my treatment plans.  He requested some special labs regarding me getting off of the prednisone and some kind of gene detection that will help determine further B-12 adjustments.

MCTD has its own unique set of issues.  I mean, do I have lupus, Sjogren’s, RA, asthma or something else? The answer is yes.  Sjogren’s takes up 3 years to diagnose.  Looking back, my symptoms began as a child and culiminated six years ago.  But, each time, bandaids were put in place via medication.  It has not been until these last few years did doctors look at the family, medical history and symptoms as a whole.

That is besides the point…I wanted to address a symptom that can be attributed to any one of the conditions I listed above.  After some research, I am not any closer to an answer, but I am confident that I will survive.

For about 4 years now, every evening I have itchy legs.  Sometimes it is so bad, I scratch them open.  I first thought this was due to not shaving my legs every day.  I figured oh, well.  Deal with it.  Then when I was diagnosed with unspecified celiac condition, I thought, great – No wheat, no itching.  It did help and wheat is a major trigger.  But, eventually the itching returned.  I figured it was the excessive chlorine in the Hialeah water when I take a bath.  I tried warm baths, hot baths and even tepid baths and showers to alleviate the itchy legs with a charcoal filter.  No use.  I have even gone completely organic for my body soaps and shampoos with non processed ingredients.  Still itchy.  The heavy steriods I was on last year at this time did lower the itching for quite a while.  Now that I am down to 5 mg and trying to get back off, itching has returned.  My sister even sent me a grounding kit to help with my symptoms.  I will be honest, it has helped with my arthritus symptoms and I have not been as sick with the grounding daily.  It has not helped with the itching.

I got fed up last week and decided to do some serious research on this.  Some of my itching is allergy related and is greatly increased when I eat or interact with an irritant.  But, the daily itching at a specific time of day is more related with auto immune disorders.  I wish I had known this 4 years ago.  It even goes along with diabetes (which I do not have, yet).  The remedies vary, but mostly include steriods (which I am trying to get off of).  Sjogren’s has the dry skin, so heavy creams help a little.  I choose ones that are all natural (unprocessed oils) and chamomile or lavendar scented.  Lupus has rashes in general and RA has psoriasis (another rash affliction).  So, pick your problem, and it has a rash or itch to go with it.

What has started new is that when I do itch, where ever I itch, it gets bumpy like hives,  Also, the itch is random and travels from part of my body to another instantly.  I have been told that that is my body doing a nerve self check.    I don’t believe that.  One school of thought with regards to the auto immune disorder is that maybe I am always itchy, but in the evening when I relax, I notice it more and therefore distracted by it more.

I have also noted that work stress has started to make the rashes and itchies worse.  Today my neck broke out in red and I felt like it had a 100 mosquito bites on it after being stressed by an event at work.  I refused to scratch and it calmed down after I relaxed.  I find that drinking plenty of liquids (I prefer tea with its natural respiratory affects) seems to help a little during the day.

I guess what I am stating is that if you are experiencing itching with MCTD, make a note of it, tell your doctor and take care of yourself.

Doing the anti-inflammatory diet has helped me immensely.  It hasn’t helped the itching yet, but that may lessen as I continue to get rid of weight.  I do notice that my hips don’t ache, my neck does not ache and I am not as puffy as I was a month ago.  All I can say, is try it.  You might just feel better.  Do I miss these foods, heck ya!  Some foods just taste better with tomatoe sauce, cream  or peppers in them.   But, I have found a new love in plain old fresh ground black pepper.

I am grateful to God for giving the courage of a friend to refer this diet to me.  May you find your well spring of endurance with God and encouragement with friends.

I followed up with the rheumatologist today after the visit with the pulmonologist two weeks ago.  The good news is that the Whole30 eating plan is helping.  Even the doctor noted I am much more animated and in 19 days of eating this way, I have removed 5 pounds.  I have been very strict with myself.  (Although I dream about eating donuts, pizza and jelly bellies.)  I have thrush in my mouth again.  But that goes along with the prednisone.  Until I get off of it, I will continue to have a flora imbalance.

He was pleased to see me weaning off the prednisone and hopes that by the time I see him in May, I will be completely off of it.  Me too.

I did share with him about the information I had found out regarding eating non-inflammatory foods.  I gave him a copy of the Whole30 rules and the shopping list that excludes nightshades which cause inflammation.  He said that there has not been enough studies regarding arthritus and intake of food.  He was pleased with my research and told me to continue with this eating plan.

We discussed a few of the medications and came to the conclusion that to leave everything the same for now since it seems to be working.

So….I will let you know how much weight has been removed when I weigh in officially on February 6th.

In the mean time, I am excited to share that a charity group has gotten together with a portable oxygen vendor to get me the machine that I need for more freedom.  It will be nice to be able to go to the mall, grocery shopping or walk more than 5 blocks alone without assistance from another person.  I will also be able to go to Chicago for my graduation in June or go see my siblings.

I am so grateful to God for this blessing and all the little blessings He has bestowed on me.

Expecting bad news at my doctor appointment, I guilted my husband into taking me this time and packed up the dog in her ESA regalia to go along.  After the walking test situation with the oxygen, I was not expecting the news I got.  Dr. Jackson was pleased to announce that my actual diffusion is improving.  Not sure what this means…I went to http://www.nytimes.com/health/guides/test/lung-diffusion-testing/overview.html  to figure out what he meant.  In otherwords, my lungs are showing some improvement.  It is when I move or exercise that my lungs don’t provide enough oxygen yet.  So, we will be performing these tests again in April.  He did mention that if this keeps improving, I will not need a lung transplant.  (Which I wasn’t going to do anyway!)

He was pleased to see that I am actively pursuing the yoga that Dr. Ascherman suggested.  He would like me to do the wellness program at UM, but he understands the distance thing is a barrier.  He was also ok with me starting a very restricted meal plan that is similar Paleo called Whole30 (http://whole30.com/).  It is much more stringent than Paleo for the first 30 days.  I have already started removing “bad” foods from my diet and without even trying the scale went down 3 pounds this week alone.  I won’t be able to update any further on that for a month.  That is one of the rules.  No scales for a month.

I told him about drinking the golden milk at night and lemon liver cleanse in the morning to help with the inflammation (Paleo Secret recipes from their Facebook site).  He said he couldn’t judge about herbal treatments because results are inconsistent.  He said if I felt okay and was getting results to continue.

So, I got a script for the portable oxygenator.  Do I really need it?  He said it would help me exercise more, go for longer walks, and help me with chores that I haven’t been able to do because of the exertion.  I was thinking in the back of my head that I could go to the mall alone and walk it without taking someone with me out of fear.

He was also pleased to see me lowering the steriods down to 7.5.  He wants me to spend the next month at 5.  The weight battle will be easier with less steriods.

I am allowed to travel by train, bus or plane now as long as I have the portable with me.  The reason being that the air pressure on the plane may affect me and sometimes at the terminals there are long walks between departure gates.  Now I can go to my graduation for college and maybe even see my Sisters during the summer.

I want to say this is all due to the meds.  But, you and I know it is due to the diligence of those praying for me and God responding.  This time last year I was supposed to be preparing to die.  Just look how far God has carried me!

In the mean time to take up the time I was using for studying, I am doing an Energy Balance Yoga by Rodney Yee that is broken up into 10 minute sections and I have started knitting again.  And of course, taking care of my comfort, Daisy.

Had my second oximetry and spirometry test today this year.  It has been six months since my last one.  I know that August, September and October were unusually brutal to me this time around.  I wasn’t sure if it was the stress of returning to work, the work air or the palms in bloom.  Well, Even though I have been feeling much better since Thanksgiving week (after the heart catherization- which was normal).  My suspicions of my worsening health have been confirmed.

Oximetry = 6 minute walk test.  Spirometry – blowing in to a machine

Oximetry test – First oxygen reading sitting down before exam.  98% – normal

After first 6 minutes walking – no oxygen assistance – 77% – bad

After next 6 minute walking test with 2L oxygen – 82% – still bad.

After a third run of 6 minutes of walking with 4L – 94% – normal

Never before have I gone to three rounds of walking or needed the oxygen increased.   I am not feeling quite as depressed as I did in June.  But, I did a devotional first and while I was walking I said the following repeatedly…

“I belong to God and He belongs to me.  No one can take that away from me.  He is in control of my situation and I need to be content.  I will stay positive.  I am in control of my mental health.”  Again, again and again.

I have paid for this blog for an additional two years…..Let’s see if I live long enough to renew it.  I am sure I will.

I have told my friends and church family.  I am happy.  I have beat one doctor’s prediction of my condition already.  He said I would be on full time oxygen by this time and bed bound.

I still work, walk the dog, go to churh and volunteer at the Joseph Dreamhouse pantry.  I do not walk as far.  Daisy doesn’t care.  She just knows it is time with me.  I can’t work as long at the food pantry.  The owner doesn’t care.  She knows I am giving my heart.  I may cough at work from talking too much sometimes.  Most people don’t care.  I am there doing my job and helping others.  So I sit way in the back by the doors at church.  That way I can escape should I start coughing or someone’s perfume is overpowering.  If I think a situation may compromise my health, I don’t do it.  Period.  I will make other arrangements to be with that person in a better situation for me.

So, I can honestly say that today could have been tragic for me emotionally.  I refuse to let it affect me that way.

I will continue to fight and enjoy each day.

By the way, I just finished my degree for Business Administration.  On to my next project!

I was really upset last week when Hurrican Matthew caused my doctor appointment to be rescheduled.  This appointment had already been rescheduled since May.  So, I got to go to the sleep specialist and now have an appointment in aobut 3 weeks to do the sleep study.  This needs to be done to see if I really desaturate during my sleep or do I stop breathing for any period of time.

I got the usual… You need to lose weight.  Why don’t you have aportable machine?  Oh, and you need to stop exercising, but  you need to lose weight.

Okay, I know I have gained weight due the steriods.  I am working on it.  Exercising does help me to lose weight, but I can’t breathe.  My doctor wanted to me to wait on the portable machine because of the sleep study.  Now, they are saying that the sleep study has nothing to do with me desaturating as I move about.

My favorite is when I was told that watching my calories and eating less is the only way to lose weight, exercise doesn’t help at all.  I don’t know where that Dr. got that information from.  Exercise has always helped me.

So….Once the sleep study is done, I am to get back with the dr to meet with my other drs to come up with a continued treatment plan.  In the mean time, I will see if I can get a script for a portable machine.

I will be done with my internship in December, then I plan to do yoga two nights a week.  So, far, this doctor is the only one against it.

So, I am back to doom and gloom.  I have in the last 14 months gone from your gonna die to  your going to be just fine, back to death is waiting behind the door for you.

Now I know why God kept rescheduling this visit.  It wasn’t a happy one and in His eyes, it really doesn’t matter.

My Goals for the next 8 months…

1.  Finish school

2.  Have a party during winter break for my birthday

3.  Go to my college graduation in Chicago in June

After that…What ever happens, God has me in His hands.  I will continue to work, go to church and serve in Joseph Dreamhouse food bank until I am unable to anymore.