Bumpy Road

 Well, just me. Little update on things. I was on the Methotrexate for 4 weeks and it didn't help with pain or inflammation at all.  It did cause some hair to come out, for the hair that I do have to dry out, and for total exhaustion throughout my body.  It really was a great 4 weeks!  (just kidding!)  My last dose was just a few days ago so I'll be glad when it is out of my system.

Apparently it must help most people because they were really surprised when I had absolutely nothing positive to say about the last 4 weeks.  My knee swelled so much I could not squat.  My hands had sharp pain several times this month.  Hips hurt constantly not just when I'm trying to sleep.  And my feet are still swelling.  So really - nothing positive to say.  😂 So, they drew blood and are now doing a pharmacogenetics test.  

Besides the physical part of it all - I am really missing being me.  I want to be outdoors.  Go on a hike. Yes, I know that it is 100 degrees out and it's way too hot to even think about it.  But, right now - I know that I actually could not physically do it.  There is a difference. I am exhausted by the weekends. My son and I go to the early service on Sunday mornings.  We usually go to a few flea markets or Goodwill before we have lunch.  By 1, I am done.  If I am still out by 2, then I'm hurting so much and so tired that I can't drive.  The Saturdays that I go see my 80 year old mother, by the time I get home in the afternoon - I am exhausted and hurting.  Cooking supper is big deal lately.  Cleaning house, well, that's funny.  

When I started this journey the beginning of the year, the pain was there during the day, but it didn't stop me.  I could still basically do what I wanted to do.  Sleeping was hard.  Hands hurt once in a while.  But, spur of the moment trip - I was ready!  However, I knew my arthritis was going to get worse.  Foot started swelling.  The first foot doctor blamed arthritis.  So, thankfully a friend that reads these updates was able to get me in the right direction.  Looking at my pain levels which have gotten so much worse just in 6 months. I cannot imagine the hopeless feeling that I would have at this point -- if I knew that I could not even get help.  The Mercy rheumatology clinic denied me because of my blood work and I was suddenly at a stopping point with no where to go.  But God. Yes, right now, I am tired and hurting every day.  The calcium deposits that are on my hips and lower back where my tendons connect -- are one of the signs of the late stages of osteoarthritis.  I don't know what the next steps are. But I am still thankful.  

  Thankful that someone reached out and helped even when they didn't have to.  Thankful that I am not still trying to find a doctor to listen to me. Thankful my boys feed me when I’m too tired to care at night. I do wish that this road that I am on would wait until I'm in my 70's  -- instead of hitting me smack in the face at 50.  But at this point, I am still hopeful.  My next appointment is in the middle of September with the main rheumatologist.  I still need a MRI on my feet to look at the tendons because of the swelling.  But the thankfulness and hopefulness are what's keeping afloat right now.  I know that I am not walking this road alone.  God has given me the strength to get through everything that I have already been through --  which is a lot the last 4 years.  I don't know what the next 12 months will look like.  Okay -- let's be honest.  I don't even know what the next 6 months will look like.  Ice packs can only do so much. But, I'm hanging in there. 

Snap, Crackle, and Pop

My blood tests came back and apparently, I don't have any food allergies.  I was a bit disappointed.  I keep hoping for a moment where it is a, "yes!  that's the reason!"  I wanted to know the reason for this stuff to be happening.  To point at something and I have this food intolerance and it caused my body to react.  But alas, that is not the case for me.

I did go to another podiatrist.  The idea that the arthritis on the top of my foot was causing all of this swelling in my feet.  It just didn't seem right.  That clinic slapped a label on it and that was it.  The new podiatrist didn't even do x-rays.  He felt around on my feet and told me that several of his patients have arthritis in their feet but it does not look like mine.  He thinks that it has be something in my system causing the swelling because when ever it is not working right - swelling always go to the feet. He saw that I had to have kidney surgery and wants to be check with my kidney doctor to see if that could be causing my swelling.  If not, then he will order a MRI so he can see what is going inside.

My symptoms are getting worse unfortunately.  Once we came back from vacation in July, my body let me know that it was not happy with me.  (I am thankful I got to enjoy and see everything on vacation though!)  I figured that if I take it easy for a week, my body can quit the flare up.  My right knee really swelled.  Everything hurt.  But I pushed through it slowly.  I can't just lay there for a week on ice.  😂 I think it hit me when I was a store and was going to squat down to a shelf to look for a size.  And I couldn't.  My knee would not bend enough for me to squat. It's been about 3 weeks now and it will now bend but it hurts when I do.  The pain in my back and hips are worse than they used to be.  My pain/ache in my hands is a lot more often.  It feels like the flare up that doesn't end.  

My rheumatologist sent me to a specialist.  She is a Physical Medicine & Rehab and Sports Medicine MD.  She some how specialized with arthritis in the middle of all that as well. She put lots of new words (that I had to look up) on my chart.  She looked at my x-rays and told me that I have an abundant of calcium deposits where my tendons attach to my bones in my hips and lower back area.  This is causing me to have enthesitis there --  which is just the swelling and pain that is associated where tendons and bones connect.   Another fancy word that she put on my chart is polyarthralgia which is pain in 5 or more joints at the same time without swelling, redness, or heat.  Of course, we have the osteoarthritis which the other doctor told me about.  The one new word that is good news is spondylosis without myelopathy.  Which means:  General degeneration of the spine without central nervous system injury.  There at least isn't spinal cord damage.  I also have seronegative arthritis on my chart.  Which just means that I have all this mess and still test negative on the arthritis bloodwork.

She did give me a prescription for methotrexate to try for 4 weeks.  It is actually a chemo drug when used a higher doses.  It's only been a week so nothing new to report.  I am done with the steroids.  I had two shots plus 5 weeks of pills in 2 months time.  All I did was gain ten pounds which is not what I need to do!  I don't like to take ibuprofen all the time because it doesn't seem to help and I have enough other issues lets not add organ damage as well.  My next appointment is at the end of the month.  I am going to ask for x-rays of my knees to see what's going on there.  I see my kidney doctor for a check up this month and I'll ask about the swelling.  I'm tired and I don't feel good more days than not.  I am thankful that I was able to get into a clinic and get some one to look at my bones not what my bloodwork says at this point.  As the new specialist told me --- if it looks like a duck, acts like a duck, waddles like a duck, we are going to treat it like a duck and go from there.  

  

I am praying that they can figure something out with this.  It sucks to just not feel like me anymore. I know people that live with arthritis for years.  I've had damaged hands since I was in my 20's because of it.  I know. However, this spot that I am in now.  I have never been before.  I keep looking at articles online that could help.  This worked for me....  Try this.....And then read all the articles trying to decide if it would help or not.   I know most are just ads trying to sell gullible people a miracle cure.  I am only 50.  Hopefully I have many years ahead of me.  I want to figure something out without 20 million warning labels.

Update on My Journey...

 It is July now.  And still trying to get this figured out.  When I spoke to my doctor about seeing a rheumatologist, I was told that the wait to get in was around a year and a half.  Seriously!  And that is if they look at your file and accept you.  So, my primary doctor ran a few test that the rheumatology clinic require before they will accept you.  Those numbers did not turn out bad enough.  I got messaged through my Mercy app the results and that was it.  End of the line despite the fact that my feet swell, joints in my hands are crooked, and I sleep with ice packs.

And, every 6 weeks the foot doctor wants to see me even though, he can't do anything to fix it.  The only option they have suggested is wearing my compression socks, tennis shoes, and maybe adding an orthotic to keep my foot from moving so much.  That sounds miserable to me. I was wearing my Chaco's everyday just a few months ago!   I told them that I would rather deal with the swelling at this point.  I am not ready for tennis shoes with orthotics everyday.  I have discovered Taos Sandals.  They are pricey, not going to lie.  I found a discontinued color half price so I decided to try them.  And so far so good.  They are made for orthopedic support and shock absorption.  A plus is they look similar to Teva's just a lot more support.  These might be my new Chaco's.  😒

Despite the end of the road through my primary doctor, I had good news in June.  A friend that has read my blog works for a company that is just opening their Rheumatology department.  She spoke with them and I was able to get an appointment.  I've only had 1 appointment so far but I was in there about an hour. (that has never happened with any doctor!)  The doctor took the time to go over each of my issues that I am having.  I also got X-rays on my hands, back, and hips done.  Next appointment is in a few weeks.  I know that it's not fixable but I would just like things to stabilize.  From my foot suddenly swelling by lunch one day at work and never going completely done again.  It's not stable right now.

The more I read about all this, it becomes more and more apparent that inflammation plays a very big part.  And a lot of inflammation comes from food.  Not one doctor has ever mentioned it to me.  But reading articles from Mayo and other articles, I wonder why they don't.  Even though I eat pretty healthy, my body could still be having reactions to the healthy things.  So, I ordered a food sensitivity test from Everlywell.  Haven't done it yet.  I figured my body to be reacting to something I am eating everyday and I don't know it.  It's worth a look at it.  It helped my son having reactions.  Turns out that he is sensitive to chicken and chicken eggs.  We ate chicken 3-4 days a week.  Once he took it out of his diet, he is feeling so much better.  My test might not show me anything.  But, what if I am dairy sensitive and I have been eating yogurt daily?  It's worth a look.

Wishing For My Chaco's

 

The human body is truly an amazing creation.  How everything works together just to keep us going each day.  Because it takes everything working together, it doesn't take much to throw it off balance.  Unfortunately, mine has been in a rough cycle the past two years.

The swelling that started on March 10th still an issue.  I've had an echocardiogram.  I had ultrasound to rule out blood clots in femoral artery.  I also went to a vein clinic and had an ultrasound done on the smaller veins in my leg and to make sure that all my valves were opening and closing correctly.  All of those tests were clear. 

Which leads me back to the foot clinic.  The end of April I got into the foot clinic and x-rays were done.  He could not see anything but arthritis on top where the swelling is.  No fracture.  No other reason for the fluid. I got a steroid shot and two pills.  One steroid and one for inflammation.  I also got a compression sock. Appointment in a month to check progress.   

One month later and I am still not in my Chaco's.  If you know me at all -- that is my only footwear unless there is snow on the ground.  Oh yes, I've been able to get my foot in there, but by the afternoon I usually regret it because of the swelling.  My foot has still never been back to normal. In fact -- sometimes my right foot likes to join in the fun.  😑  

So I am realizing that this might be my new normal.  If a month of steroids cannot bring my foot back to normal, I am not sure if it will ever be that way again.  Am I used to arthritis?  If you have seen my hands then you know that arthritis has been a part of my life since I was 25 unfortunately.  But the way it is progressing the past few years, it actually is changing me.  I am only 50, but I have been using one of those jar openers that is made for seniors for a couple years now.  I sleep with ice packs on my back.  My knees snap, crackle, and pop.  I cooked for two days for my daughter's wedding shower -- and had throbbing pain for days in my hands and feet after.  The exhaustion that didn't go away with a B12 shot. The stiffness.  The signs are all there.  

I have asked to go to a rheumatologist.  Of course, my regular doctor wants to see me before she will make the referral.  So that appointment is next week. But looking online at Mercy's rheumatology department, the wait list is long.  So I am sure that my appointment will not be soon even after the referral.  Apparently, I am not the only one falling apart.  😄 Until then, I am here.  In my velcro shoes like a toddler.  Wishing for hiking and my Chaco's this summer. 

A Bump In The Road...

 Well, it has been a few months since my last post.  Thankful to say that my last blood work and ultrasound with my kidney doctor turned out normal.  So, I am good for another 6 months.  I also turned 50 just a few days ago.  Before last year - I definitely would not have actually wrote that.  But, having a year of surgeries and recovery put things in perspective.  I am thankful to have made it through everything to be here. I am thankful for God's protection to catch problems before they are not fixable.  I actually told one of my children last year that if I made it through everything - I wanted a big birthday party for my 50th.  Well, that didn't happen....probably because I didn't plan it! 😄  

But my hope for a quite, calm year without any health issues - has a bit of a kink in my plans.  The beginning of the month, actually March 10th, my left foot started swelling.  I was at school and by my lunch break, my straps on my Chaco's were tight.  By the end of the day, my foot reminded me of my pregnant preeclampsia days.  I came up with lots of excuses not to go to the doctor.  I tried compression socks for a couple days.  I waited a whole week before going.  My foot never would go back to normal.  It was continually puffy throughout the week.  I could only wear my Teva's because the Velcro is a lot easier to adjust.

During my doctor's appointment the following week, she automatically drew bloodwork.  Which was St. Patrick's Day and Krispy Kreme had green glazed donuts for the holiday.  Which I thought would be great to share with work friends...   which did not help my sugar levels in my bloodwork. Just being honest here! 😁  Anyway - she also ordered an echocardiogram because fluid retention usually means a heart issue. 

March 25th was my echocardiogram.  The day after my 50th birthday.  As I was laying there and she was putting that jelly on my listening and taking pictures of my heart -- my thoughts went to all of the times that I was there when they did this to Kent.  My prayer was just not this Lord.  Not me.  I have seen what heart disease does.  I am a widow because of this.  All the thoughts going through my head while I laid there trying to hold it together.  The lady assured me that if it was too bad, she would get a cardiologist in there during appointment.  When she let me get dressed and ready to go, I joked that it must have been good because no on was rushing in here.  She just smiled and said, "for now."

My bloodwork came back and she also ran a heart test, the PROBNP, N Terminal.  Which normal is <125.  Mine came back <36.  Looking that up, and it seems like a positive number.  Then 24 hours later, the results came back from my echo on my Mercy App.  LV function is normal and no significant valvular disease.   🙌  Now going through and reading what the cardiologist wrote - my LV number is a low normal (55%).   I am just taking a deep breath right now.  My heart does not seem to be the issue.  My boys have been good to me knowing that this is bothering me a whole lot more than I am letting on or talk about.  It has brought up too many memories.

I still have no answers.  My foot is still sore and swelling.  I am currently waiting on another referral for another test or ultrasound.  I don't have any answers.  But - I do know who has held me together each day when I didn't know how I'd make it.  He was there at my lowest and my hardest. God will get me through this as well. 

12 Months

 October of last year was when it all began.  I'd been having some pain for a few months and finally decided to get it check out.  Doctor figured it was a hernia and sent me to a CT scan to confirm.  Then, I got my list of diagnosis.  And a new set of doctors. 

It has been hard.  After three surgeries in an 8 month span -- my body is still healing.  The first four weeks of summer break, I did nothing.  I slept a lot.  I kept thinking that I need to get up and start my summer projects.  But, I was just exhausted.  The "want to" was not there.  The second month, I slowly started feeling more like myself.

I have started walking again.  Not everyday yet, but it's getting there.  I know that sitting there is not going to help my energy levels or my healing overall.  But somedays, the tired wins.  I have one more thing scheduled this year.  A colonoscopy is planned for November.  Praying nothing is found there.  My dad passed away of colon cancer so that is always in the back of my mind.   

This year has changed me.  I don't take as much for granted.  I was always the one that took care of everyone else:  my kids, my dad, my mom, and Kent.  I never gave much thought to my own health.  Yet, our own health is not guaranteed.  Time with our family is not guaranteed.  It only takes a moment for our life to change.  One phone call.  One accident.  One test result.  For many of us that have gone through these health challenges, there will always be a before and after.

I am a strong person who has been through a lot in my life.  I will forever be thankful to God for protecting me from my childhood abuse and all the way through these past 12 months and everything in between. I know that it could have ended up much worse.  I also know that nothing that I did changed the outcome.  My life was and always will be in the hands of God first. The many skilled doctors second.  I’m praying the next year holds a lot less doctor’s visits. But a lot more laughter and time spent with family and friends. 

Healing and Vitamin D

 Words have that stuck with me through the past 8 months.  You cannot heal in the same environment that has made you sick.  Think about that for a moment.  That includes your diet, stress, relationships, thoughts, and especially your daily habits.  MOST cancers don't pop up randomly.  Only 5-10% of cancers are genetic.  Most cancers come from long-term stress, inflammation, toxic exposure, and nutrient depletion.  So, if I kept doing what I've always done - my body would stay a toxic, nutrient depleted environment.

Once your cells have mutated and resulted in cancer, you body and cells are more likely to do that again. So many people who receive the "No Evidence of Disease" label, go back to their previous lifestyles.  Only to find out that the cancer often resurfaces within 5 years.  No, I have not become one of the crazy health nuts that would run away from treatment and only eat seeds.  However, I was blessed to catch my cancer in time.  And now, I need to look at the preventive aspects.  My healing journey.  Will it come back?  I don't know.  However, I do need to strengthen and heal my body.  There will always be a "before cancer" and "after cancer."  

One of the things I had no idea about before all of my health issues.  A small little thing that is easily overlooked and usually not even tested for regularly.  Your Vitamin D level.  It is not just another vitamin.  Your body treats Vitamin D like a hormone that regulates everything from immunity to gene expression. Vitamin D undergoes a two-step conversion in the liver and kidneys to become calcitriol, an active hormone.

Calcitriol binds to Vitamin D receptors inside cells and influences genes by turning them on or off. This is way more than just helping bones absorb calcium.  It plays a role in regulating immune response, inflammation, phosphate balance, and cellular growth and repair. That means lower Vitamin D levels are associated with higher risks of cancer!  Vitamin D is believed to play a role in regulating cell growth, differentiation, and apoptosis (programmed cell death), which are all processes involved in cancer development and progression. It may also influence the immune system's ability to fight cancer cells. Low levels are also associated with poorer outcomes. Why?  Because affects cells growth and repair.  

I had no idea.  Luckily my doctor did test for this once all of the issues popped up.  But who knows how long it has been low.  It's not on any of the normal blood work that the doctors run.  It's a separate test.  But low levels of  Vitamin D are connected to low energy, depression, frequent illnesses, and even hair loss.  But most important -- it's linked to increased risks of cancer.  So when it is time for your next wellness exam, just ask to have your Vitamin D level checked.  Don't go for years never knowing like I did. 

As for how I'm doing since my surgery.  It is week 3 of recovery from my hysterectomy.  Which is by far, the worst one yet.  In comparison to kidney surgery - this is easy.  But compared to my "normal" - week 3 is rough.  More pain than the previous weeks.  When I looked it up I found that week 3 has more internal healing than previous weeks.  I am praying that week 4 is a lot easier because I start back to work on Monday.  I hade an appointment with doctor this morning to check my incisions.  Everything looks good but he did say I need to take an easy and give my body time to heal.  Which is easier said than done.