The Seesaw of My Life - One Week Up...One Week Down...Looking Up Again

In the past few weeks I have had my true ride on the Lupus seesaw.  I had an incredible time at my cousin's wedding in Roxbury, NY. The location was beautiful, seeing my family was incredible, and my body cooperated enough for me to have a wonderful time at all of the events.  I was able to do more then I ever thought possible!  I even danced at the wedding (something I NEVER thought I would be able to do again, given my back fractures), but not only was I able to dance, I was able to do it with little pain!!  I was mindful of my limitations and made sure to listen to my body, and because of this, my parents and I had a fantastic trip.

 

The day after we came home I had an appointment to start the bone-building medication, Forteo. I had researched this medication, and my doctors and I all agreed this was the only medication that seemed to "fit". It is a daily injection, given for only two years.  There are no preservatives that would harm me...so we went ahead with the plan to start the medication in the doctor's office, just in case I had a reaction. I am not a huge fan of sticking myself with a needle, but it is a subcutaneous shot, so the needle is very thin and it came in a pen, so it was a premeasured dose and very easy to handle. I was able to complete the injection into my stomach with no real problem. About thirty minutes after the injection I realized that the site burned, so I lifted my shirt to look at the site, and noticed that there was a VERY red, VERY angry looking red circle that came away from the injection site, along with a red line that went from the site to box in the circle.  I knew this was NOT a good sign. I showed the nurse, who promptly went to get the doctor. She was not pleased with this, and made me stay for another hour to make sure I was not going to have any other reaction. After the hour, the redness had receeded a little, and I was feeling fine, so she let me go home...and instructed me to go to the ER if I felt any worse. If the redness had gone completely and nothing else happened, I was to come back the next day for my next injection. If not, I was to wait a week and we would try it again.

 

 

About three hours later, I looked at the site, and noticed that the redness had almost completely faded. I was relieved because I was having no other symptoms. I figured I would go back the next day for another injection. Oh how wrong I was...because forty-five minutes later it felt like I just got off the tea-cup ride from Disney World, I was SO dizzy. Then the vomitting began...and it would not stop long enough for me to take medication that would help the other symptoms I was beginning to experience: muscle spasms, fainting, and throat spasms. I could barely breath. I knew I had to go to the ER because there was NO way I would be able to take my medication that would open my throat with the way I was vomitting. 

 

 

My parents drove me to Cleveland Clinic, which is where I had the injection that morning, so the records were in the computer about what happened.  The ER doctor was very concerned because this reaction started with a skin reaction and then went systemic...so they gave me the cocktail, despite my protests that they just try zofran and valium first. He said that my choice was epinephrin AND solu-medrol or just solu-medrol along with zofran, benedryl, and valium...I relented and took the one without the epinephrin because of how high my heart rate goes on epi, and how difficult it is to bring it back DOWN.  I was afraid of another stroke if they shot my heart rate up that high.  Well, despite NOT getting the epi, I had a neurologic event that resembled a TIA. About thirty minutes after receiving the medications (which were given ALL at the same time...talk about a whammy), my left side went completely weak and I got very confused.  It was difficult to concentrate on what the doctor was saying, although I am not sure if that was from fear, medication, or the event itself.  The doctor said he was going to intubate me (put a breathing tube in), if I did not improve or if my breathing became more labored. I was extremely frightened at that point.

 

They rushed me into CT and that came back normal. My symptoms of left sided weakness completely resolved within fifteen minutes.  The doctors are not sure what happened...maybe the medications hitting me all at once, maybe a slight TIA, we just do not know.  I see my neurologist on Monday to discuss what happened. 

 

My breathing did not improve until three hours after the medications were given...and four afters the symptoms started.  I was exhausted! All the tests came back normal and all I wanted to do was GO HOME! The ER doctors wanted to keep me overnight for "observation", but I signed myself out...I could not stay there any longer and keep my sanity.  My Mom and I were over-tired and the ER was incredibly crowded.  We made it home and in bed just before midnight.

 

It has taken me about a week to start recovering from that horrific event.  I still am suffering from PTSD (Post Traumatic Stress Disorder), and have flashbacks that wake me up at night and make it difficult for me to go back to sleep.  I am trying to remind myself that I am safe...I am home...I am still here...

 

Just writing about what happened shows that I am on the upswing...even as I have tears in my eyes writing this, I know that it is cathartic. I have to get it out and let it go.  That is the only way to move forward.  I made a promise to myself to stop being treated like a chemistry set.  I cannot move forward when the medications given to me blow me up and push me back.  I will stick with the medications I know work, eat the foods that do not make me ill, and do as much as I am physically able to keep myself strong...and that will make me stronger still. 

 

I am tired of the downs that life brings my way...I am ready for more time UP...this is the seesaw of my life. Some things I have control over, and what I put into my body is one of those things. I also control how I FEEL about what happens.  Of course I will have days when I feel sad, that is normal...but I want more days that are HAPPY. I want to enjoy the little things in life. That I can do...that I WILL do! Lupus, autonomic dysfunction, back fractures...they all change things, but I can still be happy with what I can DO. I have to focus on that...the rest will come with time.

Practice What I Preach - Life Post TIA

One week ago I suffered from a TIA, transient ischemic attack, or mini-stroke.  The only reason it stayed "mini" was due to the fact that I was able to notify my Mom, who called 9-1-1, VERY fast.  I was rushed to the nearest hospital where I was given TPA, the medication to dissolve clots and save the brain from permanent damage. 

We knew something was VERY wrong because when I woke up around 8 a.m., I had double vision and the room was spinning like I had been on the Teacup Ride. I closed my eyes and tried to relax, convincing myself that maybe I sat up too fast and my pressure shifted (though nothing like that had ever happened to me before). When I opened my eyes about a minute or so later, my vision had improved, though still blurry, and the room had stopped spinning, but my right side had gone heavy/limp/paralyzed.  I reached over and grabbed my cell phone to call my Mom on the house phone.  I then realized that I could not keep my head from flopping back towards the right, and my tongue was also shifted towards the right.  All I could say into the phone was a slurred "wrong".  My Mom came rushing into my room and she tried to do the typical neuro tests on me, that we know so well, and that I can usually do with no problems at all.  This time, however, I could none of them on the right side. When she asked me to smile, she knew something was terribly wrong...my mouth went up normally on the left, but stayed in a straight line on the right.  That was when she called for the ambulance.

I was EXTREMELY lucky! This medication can only be administered within the first three hours after exhibiting symptoms, and I was given the medication at the two and half hour mark.  My symptoms started improving each hour after that...slowly...starting with having more strength in my hands, and moving the right side of my mouth...the last thing to come back was the strength in my leg, which was back twenty-four hours after the TIA.  I was in the hospital a total of three days.

Picture when my mouth was finally starting to smile normally!

On the last day, the neurologist told me I NEEDED to take a blood thinner to prevent this from reoccurring.  The problem, I told her, is that I am allergic to NSAIDS. Last time I took one I had a Steven-Johnson reaction, which is a very serious skin rash that can turn deadly if left untreated, as sores can form on internal organs.  I was told by a dermatologist that I was LUCKY to be on steroids because it saved me from having a more serious reaction and organ damage.  Well, this neurologist believed that if I took a baby aspirin, only 81 mg, three times a week, specially compounded to have no inactive ingredients that could make me ill (since the OTC brands all have talc's and starches that irritate my lupus), I "should" be fine. 

I really need to start taking my own advice about being your own advocate!  I listened to this doctor...I had this aspirin compounded, paying $22.00 for fifteen pills of baby aspirin to hopefully prevent me from having future clots. She truly scared me that if I did not take this, another clot could, indeed happen.  I knew the risks, though...and I took the pill anyway.  Less then an hour after I took the aspirin I felt the burning/itching sensation up the back of my neck...it quickly went into my throat and into my nose and eyes.  My Mom took me back to the ER where I received an IM (intramuscular) injection of benedryl (which in my opinion does NOT work as quickly or effectively as IV benedryl), dissolvable zofran for the nausea (again, not as effective as IV), and my own muscle relaxant for my throat spasms, since they would not give me anything for that since I refused solu-medrol. 

I DID advocate for myself by refusing solu-medrol!  There was NO WAY I was getting another 125 mg injection of steroids and then a medrol-dose taper for a medication that is supposed to be out of the system in four hours.  I knew I needed the benedryl that went directly into the body...as my stomach does not absorb things properly on a normal basis, and I was so nauseous, I had no idea if I could keep down enough oral benedryl to make a difference.  The ER doctor did not seem pleased with me that I refused the steroids, just like the neurologist was not pleased when I told her I could not take aspirin.  I relented on the aspirin and put me right back in the ER with a severe allergic reaction!! 

From now on...I am not going to care what the doctors think about me!  I am going to SAVE MYSELF!!  They do not have to live in this body, I DO!  I will let them know the reasons as politely as possible, but I will not back down.  This is my life, and let me tell you, I WANT TO LIVE IT!  It is high time doctors learn to LISTEN to their patients, and understand we just want to LIVE and be HEALTHY with the LEAST amount of side effects possible!! 

A Coffee a Day to Keep the Fainting Away?!?

I have been sick with a sinus infection/upper respiratory infection for about a week now, on some seriously strong antibiotics and muscle relaxants to help with the spasms that wrack my body.  Every time I become sick, I faint...my muscles spasm uncontrollably, including my throat, making it very difficult to breath (especially when I have a respiratory infection).  While the muscle relaxants work, I know it is not good to take them continuously, and for long periods of time...because not only would I build up a tolerance, my body requiring more and more of a dose to achieve the same results, but it would be very difficult to stop the medication when I feel better. 

While most people would have gone to the hospital after experiencing the type of symptoms I had, I waited it out...hoping I would start to feel better.  I know that if I went to the hospital the doctors would, first and foremost, insist on putting me on high dose steroids to take down any inflammation.  This is such a common practice...and one I have experienced more times than I can count.  I know my body cannot handle another bout of high dose steroids...my bones will literally fall apart. I already have severe osteoporosis and multiple compression fractures in my spine, from years on the steroid seesaw.  I will not put my body through that torture again!

Yesterday I remembered something my pulmonologist told me years ago, when I stopped taking inhalers because of all the side effects...caffeine is just as effective a vasodilator as some of the inhalers.  It works to keep the airways open, the blood pressure and heart rate up, which can increase the oxygen levels in the blood. 
I figured, what the heck...I would give a cup of regular coffee a try. 

After I went for some blood work, my Mom and I stopped at Dunkin Donuts and I got a regular iced coffee...I added my almond milk and a couple of sugars at home, and was really surprised by the difference it made.  My breathing DID somewhat improve.

I drank the rest of the coffee this morning, and while I did have muscle spasms, I DID NOT FAINT!  My blood pressure and heart rate stayed up enough to keep me from fainting!  My airways opened up enough for me to breath a little easier after getting rid of some "junk" that was stuck in my airways  (sorry if that is too descriptive, but I want you to understand how this is working for me). 

I am by NO means saying this is for everyone, or that it is a wonder cure...but if it helps keep me from fainting, that would be HUGE!  Here is for hoping a cup of coffee a day can keep the fainting away!!

Dating Again...

I have been single since I fractured my spine in the beginning of October.  I have not even ATTEMPTED a date since that time.  At first it was due to the fact that I was fresh out of a relationship I hoped was going to work, and then it was because I was completely focused on my health.

I did not feel like myself, look like myself (thank you Cushing's Syndrome for the lovely moon face and belly), or have the desire to even TRY to put on an act for anyone. Once I stabilized on my "normal" dose prednisone (15 mg), I started to feel the shift in my personality, back to a more healthy sense of self.  The weight from the Cushing's Syndrome is SLOWLY coming off...about a pound a week...I have about eight more pounds to go before I will be satisfied. So far so good, especially with my new diagnosis of hypothyroidism (which does make weight loss more difficult, especially around the mid-section). I also feel as if I do not have to put on a show for anyone, but can be myself...and flirting is fun again. 

The scary part, for me, with meeting someone NEW is that the guy does not know the details and realities about my illness.  I always explain that I have lupus, autonomic dysfunction, spinal fractures, etc...but dealing with the everyday symptoms of a chronic illness are difficult in the best of circumstances, when trying to cope with them while just learning about each other and trying to have FUN is a whole different ball game. 

I am trying to take one day at a time and just go with it...hopefully I will finally meet the right guy...the one who can accept ALL of me...love ALL of me. 

Fuzzy Head (and other symptoms) = Low Thyroid

So after months of tonic muscle spasms, headaches, throat spasms, chills, dry/itchy skin, depression, extreme exhaustion, weight issues (especially in the midsection), and a REALLY fuzzy mind (including stuttering at times), we finally figured out what is wrong...I have hypothyroidism.  The thyroid has to work overtime to create the thyroid hormone (TSH) to try to keep up with the body's demands.  Due to the overtime work of the thyroid, the TSH (thyroid stimulating hormone), is high.

This diagnosis was made when I went into the ER for stuttering.  Of course, the doctors immediately thought I had a stroke, and I am incredibly thankful the doctor thought enough to run a thyroid panel along with all the other blood work.  I did not have a stroke. With the headache, tonic spasms, and fuzzy mind along with the blood work, the diagnosis of hypothyroidism was made. 

My rheumatologist started me on the most natural form of thyroid medication (and the oldest), Armour Thyroid.  He started me on half the lowest dose, to make sure I did not have a reaction, since I am so sensitive to medications.  Unfortunately, the new medication can take five weeks to START working.  I feel a little better with the spasms, but the exhaustion, fuzzy mind, depression, and dry/itcy skin are still quite annoying!  Also, a side effect of the medication is hair loss...for at least three months as the body adjusts. Sigh...yes, this seems to be one side effect I am experiencing.  I have to keep reminding myself it is temporary. 

I think the worst thing for me right now is the depression and fuzzy mind...although I am wondering which came first. I know that depression can CAUSE a fuzzy mind, and I know that a fuzzy mind can CAUSE depression...I have a feeling that in my case, the fuzzy mind is causing the depression.  I am not used to "seeing through cobwebs". That is the best way to describe how I am thinking these days. 

I have a thyroid ultrasound on Friday because my doctors noticed that it feels enlarged.
The only thing left to say is I hope as the medication starts to work, the days become brighter as I drag myself back from the edge of the darkness and try my best to see through the cobwebs.

Shrinkage

I knew the fractures in my spine caused me to lose some height, but I thought only a couple of inches from my already petite frame.  I started out at only 4'11...now, after SEVEN vertebrea fractures, I am 4'6.  I shrunk five inches. I never thought it was that much! 

It is no wonder the prednisone weight seems so drastic even though I only weigh 105.5 now.  I am losing about a pound per week, yet still look like I swallowed a beach ball, and now I know why. My torso is SO short now, which, truthfully makes my legs look MUCH longer. I do not really see that as a bad thing...although it does make finding clothes that fit properly a challenge, especially tops and dresses.

I do have to continually work on my posture, making sure I stand up straight, not hunching over...keeping my shoulders back and head up (my physical therapist calls it "walking like a supermodel").  That has helped dramatically, but I still have a long way to go...and I know I will never regain that height.  I just have to deal with the fact that I shrunk.  I shrunk five inches...sigh. 

For all of you on prednisone, PLEASE, take some form of calcium and  vitamin D to hopefully prevent spinal fractures and SHRINKAGE! 

Takin the Ride to Facebook!

I decided to take this wild ride to Facebook  I will, of course, still write here...so have no fear, this page is going nowhere! Here is the link to my new Facebook page, where I will be posting Lupus information, events in my area (and online), offering up support, and fun pictures  :)  Ivylfa My Lupus SeeSaw .  I hope you will "like" my page and spread the lupus awareness and lupie/spoonie love! 

Thank you so much for your support and for continuing to read about this crazy/wild ride I call Living with Lupus!