Sinus Surgery and Recovery 

I wish someone would have told me of all the horrors I’d find in the aftermath of my sinus surgery. I really feel like I wasn’t prepared for this at all and I did my due diligence in researching this procedure before even committing to it – or so I thought:

  • I read everything I could find  online
  • I talked about it in-depth with my surgeon
  • I even talked to friends and family who have had sinus surgery themselves (and not that long ago I might add)

But nothing – NOTHING – could have prepared me for the reality of this surgery. It’s like they knew nobody in their right mind would go through with it if they had told the truth. So, in the spirit of patient education and the level of honesty I put forward on this blog [even if it is highly embarrassing at times],  I figured I’d provide the truth – the REAL truth.

I am  giving you fair warning now – the following will not be pleasant

and I have the pictures to prove it!

If you’re really squeamish or easily grossed out, please do yourself  a favor and skip over this post.

If you do decide to proceed, however, you do so at your own risk.

Please don’t say I didn’t warn you.


Background:

As I had mentioned in a previous update, my new neurologist had finally ordered an MRI of the Head/Brain after years and years of me begging every other doctor I saw to have one done. Really, I just wanted to see if my symptom were really inside of my head this whole time like everyone kept telling me it was.

In case you were wondering, here’s what my brain actually looks like:

mri-of-the-head-and-brain-1mri-of-the-head-and-brain-2

Here’s what the MRI report said:

mri-report-1

Well, at least my brain is functioning appropriately. 

My sinuses, however, not so much…

The neurologist decided to refer me to an ENT to see what needed to be done. After the reading the reports and looking over my long case history, the ENT didn’t originally believe that my sinuses were that bad. However, he did say that the sinus cavity is better viewed using a CT rather than MRI, so he ordered a CT scan without contrast to rule out the possibility that I might need surgery to fix my sinuses.

managing-fall-allergies-and-asthma-23-728

This is a copy of my CT report:

ct-sinus-report

I guess I was going to need surgery after all.

Bummer.

icd-code


Surgery Prep:

The night before surgery, my occipital and posterior auricular lymph nodes suddenly began to swell and were extremely painful. I started to become really worried I wouldn’t be able to do the surgery, so I called the doctor on-call and he didn’t seem too concerned about it. He just told me to wait and see how I felt in the morning.

Luckily, the only surgical prep I had to do the night before was to stop food and water 8 hours before. However, I was allowed to take all my medications on the morning of the procedure and was allowed a few sips of water to get them down.

I still felt super sick that morning, although I decided to go through with the surgery anyway. Fortunately, my lymph node swelling had gone done for the most part. My stomach pain and nausea were so bad, though, that I had to take meds just to get myself into the car for the 15-minute drive to the hospital. Really, the last thing I wanted to do that morning was to have surgery but I also didn’t want to have to prep again either. However, while laying in the hospital bed waiting for the nurse to take me back for the procedure, I honestly began to regret this decision.

The Procedures:

Functional Endoscopic Sinus Surgery (FESS):

sinus_diagram

Given the extent of the opacification and the number of procedures I was having,  my surgery needed to be done endoscopically in the hospital, instead of outpatient in office as some of these procedures are.

Taken from the American Academy of Otolaryngology website (2015 ):

Developed in the 1950s, the nasal endoscope has revolutionized sinusitis surgery. In the past, the surgical strategy was to remove all sinus mucosa from the major sinuses. The use of an endoscope is linked to the theory that the best way to obtain normal healthy sinuses is to open the natural pathways to the sinuses. Once an improved drainage system is achieved, the diseased sinus mucosa has an opportunity to return to normal.

FESS involves the insertion of the endoscope, a very thin fiber-optic tube, into the nose for a direct visual examination of the openings into the sinuses. With state of the art micro-telescopes and instruments, abnormal and obstructive tissues are then removed. In the majority of cases, the surgical procedure is performed entirely through the nostrils, leaving no external scars. There is little swelling and only mild discomfort.

The advantage of the procedure is that the surgery is less extensive, there is often less removal of normal tissues, and can frequently be performed on an outpatient basis. After the operation, the patient will sometimes have nasal packing. Ten days after the procedure, nasal irrigation may be recommended to prevent crusting.

Septoplasty:

septoplasty

Taken from the American Academy of Otolaryngology website (2016 ):

The shape of your nasal cavity could be the cause of chronic sinusitis. The nasal septum is the wall dividing the nasal cavity into halves; it is composed of a central supporting skeleton covered on each side by mucous membrane. The front portion of this natural partition is a firm but bendable structure made mostly of cartilage and is covered by skin that has a substantial supply of blood vessels. The ideal nasal septum is exactly midline, separating the left and right sides of the nose into passageways of equal size.

Estimates are that 80 percent of all nasal septums are off-center, a condition that is generally not noticed. A “deviated septum” occurs when the septum is severely shifted away from the midline. The most common symptom from a badly deviated or crooked septum is difficulty breathing through the nose. The symptoms are usually worse on one side, and sometimes actually occur on the side opposite the bend. In some cases the crooked septum can interfere with the drainage of the sinuses, resulting in repeated sinus infections.

Septoplasty is the preferred surgical treatment to correct a deviated septum. This procedure is not generally performed on minors, because the cartilaginous septum grows until around age 18. Septal deviations commonly occur due to nasal trauma.

A deviated septum may cause one or more of the following:

  • Blockage of one or both nostrils
  • Nasal congestion, sometimes one-sided
  • Frequent nosebleeds
  • Frequent sinus infections
  • At times, facial pain, headaches, postnasal drip
  • Noisy breathing during sleep (in infants and young children)

In some cases, a person with a mildly deviated septum has symptoms only when he or she also has a “cold” (an upper respiratory tract infection). In these individuals, the respiratory infection triggers nasal inflammation that temporarily amplifies any mild airflow problems related to the deviated septum. Once the “cold” resolves, and the nasal inflammation subsides, symptoms of a deviated septum often resolve, too.

Septoplasty is a surgical procedure performed entirely through the nostrils, accordingly, no bruising or external signs occur. The surgery might be combined with a rhinoplasty, in which case the external appearance of the nose is altered and swelling/bruising of the face is evident. Septoplasty may also be combined with sinus surgery.

The time required for the operation averages about one to one and a half hours, depending on the deviation. It can be done with a local or a general anesthetic, and is usually done on an outpatient basis. After the surgery, nasal packing is inserted to prevent excessive postoperative bleeding. During the surgery, badly deviated portions of the septum may be removed entirely, or they may be readjusted and reinserted into the nose.

If a deviated nasal septum is the sole cause for your chronic sinusitis, relief from this severe disorder will be achieved.

SMR Turbinate Reduction:

inferior-turbinate-reduction

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Taken from the American Rhinologic Society website (2015):

There are many ways to shrink the size of the turbinates. Surgery is typically called turbinate reduction or turbinate resection. Surgery can be performed either in the office or in the operating room. In many instances, turbinate surgery and septoplasty are performed at the same time.
It is important that the turbinate not be removed completely because that can affect the function of the turbinates. Complete turbinate removal can result in a very dry and crusty nose. Occasionally, turbinate tissue will re-grow after turbinate surgery and the procedure may need to be repeated. This is preferable to the situation of totally removing the turbinate.

You may hear of many different terms being used when it comes to surgery for the turbinates. Examples of these terms are cauterization, coblation, radiofrequency reduction, microdebrider resection, and partial resection. These all refer to different methods of reducing the size of the turbinates.

Some of these methods shrink the turbinates without removing the turbinate bone or tissue. These methods include cauterization, coblation, and radiofrequency reduction. In each of these methods, a portion of the turbinate is heated up with a special device. Over time, scar tissue forms in the heated portion of turbinate, causing the turbinate to shrink in size.

With some of the other procedures, a portion of the turbinate is removed. It is important that enough of the turbinate be left intact so that the turbinate can warm and humidify the air that is flowing through the nose. A procedure called submucosal resection is a common technique used to treat enlarged turbinates. With this procedure, the lining of the turbinate is left intact, but the “stuffing” from the inside of the turbinate is removed. As the turbinate heals, it will be much smaller than before surgery. Sometimes, this resection can be performed with a device called a microdebrider. This device allows the surgeon to remove the “stuffing” through a small opening in the turbinate. In some instances, more of the turbinate is removed.

In some instances, packing may be placed in your nose during the healing process.

I was lucky enough to receive absorbable packing and sutures for my surgery – I heard the removal of the other kind of nasal packing and stenting is awful, though.

Maxillary Antrostomy w/ Removal of Maxillary Tissue:

Endoscopic anatomy of the pterygopalatine fossa

Endonasal endoscopic approach to the pterygopalatine fossa. (A) Maxillary antrostomy made in the medial wall of the maxillary sinus. A mucoperiosteal flap is reflected posteriorly to the crista ethmoidalis (CE) to expose the sphenopalatine artery (SPA) and posterior nasal artery (PNA) emerging from the sphenopalatine foramen. (B) Crista ethmoidalis and sphenopalatine foramen are enlarged with a drill. The posterior wall of the maxillary sinus is removed in a medial-to-lateral manner to the edge of the infraorbital nerve (IN). Elevation of the large fat pad, occupying the pterygopalatine fossa, exposes the internal maxillary artery (IMA) and its branches, the sphenopalatine and posterior nasal arteries, which are clipped and ligated. (C) With the use of a drill or Kerrison rongeur, the greater palatine nerve (GPN) is safely mobilized from its bony canal inferiorly. Gentle lateral retraction of the ganglion and GPN reveals the vidian nerve (VN) emerging from the vidian canal (VC) and exposes the pterygoid plate. (Reprinted with permission the Mayfield Clinic.)

Taken from the New York Head and Neck Institute website (2016):

Surgery begins with careful inspection of the nose. Key landmarks are the three turbinate bones or conchae (conchae = shell) arising from the lateral nasal wall and the ostiomeatal complex (a complex where the maxillary, ethmoid and frontal sinuses drain into the side wall of the nose). The most anterior, or nearest to the front structure within the ostiomeatal complex, is the uncinate process. This semilunar (half moon shaped) ridge of bone projects in front of the ostium of the maxillary sinus. Behind or posterior to the uncinate process, is a group of ethmoid cells known as the bulla ethmoidalis. The first step in ethmoidectomy is the careful and atraumatic removal of the uncinate process to visualize the ethmoid sinus and maxillary ostium. In our experience, incomplete removal of the uncinate process is a significant factor in leading to revision surgery. We believe that the uncinate should be removed at its attachment to the lateral nasal wall.

Endoscopic view of right nose showing uncinate process (up) and middle turbinate (mt). Ethmoidectomy begins with probing the space between the uncinate process and bulla ethmoidalis known as the ethmoid infundibulum (infundibulum = funnel-like). Endoscopic view of right nose showing uncinate process (up) and middle turbinate (mt). Ethmoidectomy begins with probing the space between the uncinate process and bulla ethmoidalis known as the ethmoid infundibulum (infundibulum = funnel-like).

 

Often complete removal of the uncinate process reveals the natural ostium or drainage pathway of the maxillary sinus into the nose. Various instruments have been designed to enlarge the maxillary ostium and remove the uncinate process. How much to enlarge the natural ostium of the maxillary sinus, also known as an antrostomy (antrostomy = to drain or make a permanent opening in the maxillary sinus to the nose), remains the subject of debate. Some surgeons prefer to only expose the natural ostium, while others routinely remove much of the maxillary sinus wall as part of this step of the procedure. All agree that the antrostomy must include the natural ostium of the sinus because mucocilliary flow is directed to the ostium and mucous may re-enter the sinus through the antrostomy. This so-called “circus effect”, which leads to reinfection of this sinus, is avoided by incorporating the natural ostium in the antrostomy.

Confining maxillary sinus surgery to primarily restoring the drainage pathway of the sinus into the nose is a significant departure from the pre-minimally invasive or functional sinus surgery era. Traditionally, theCaldwell Luc procedure was an integral part of maxillary and ethmoid sinus surgery. However, the American anatomist J. Parsons Schaefer recognized that the “maxillary sinuses are often the cesspool for infectious material from the frontal sinus (sinus frontalis) and certain anterior group of cellulae ethmoidalis” (ethmoid sinus air cells). That is, Schaeffer was implying that the maxillary sinusitis was often the result of infected drainage from the ethmoid and frontal sinuses, and not the cause of infection in these sinuses. In the modern era of sinus surgery, Caldwell Luc is reserved for disease processes such as fracturs or tumors which cannot be treated through an endoscopic transnasal approach.

Endoscopic image of the right nose showing completion of removal of the uncinate process by a debrider exposing the natural ostium of the maxillary sinus (mt = middle turbinate). Following the antrostomy, the maxillary sinus is inspected and polyps, fungus or infected secretion are removed. An uncommon complication of antrostomy is to injure the nasolacrimal duct (arrows) which drains tears into the nose. When such injuries do occur, the patient may have no problems because the tears drain directly into the nose at the site of injury. Less often the patient experience epiphoria or tears flowing onto the cheek. In such individuals, a dacryocystorhinotomy (DCR) reestablishes the normal drainage into the nose. Axial cadaver section through the ethmoid sinus. Enlargement outlines the infundibulum (infundibulum = funnel-like) drainage pathway of the ethmoid (yellow) which is bounded anteriorly by the uncinate process (yellow arrow) and posteriorly by the cells of the bulla ethmoidalis. After the uncinate process is removed, ethmoidectomy consist of exenteration of the ethmoid cells. From Schaefer SD et al. The combined anterior-to-posterior and posterior-to-anterior approach to ethmoidectomy: An update. Laryngoscope 116:509-513, 2006.
Endoscopic image of the right nose showing completion of removal of the uncinate process by a debrider exposing the natural ostium of the maxillary sinus (mt= middle turbinate). Following the antrostomy, the maxillary sinus is inspected and polyps, fungus or infected
secretion are removed.
An uncommon complication of antrostomy is to injure the nasolacrimal duct (arrows) which drains tears into the nose. When such injuries do occur, the patient may have no problems because the tears drain directly into the nose at the site of injury. Less often the patient experience epiphoria or tears flowing onto the cheek. In such individuals, a dacryocystorhinotomy (DCR) reestablishes the normal drainage into the nose. Axial cadaver section through the ethmoid sinus. Enlargement outlines the infundibulum (infundibulum = funnel-like) drainage pathway of the ethmoid (yellow) which is bounded anteriorly by the uncinate process (yellow arrow) and posteriorly by the cells of the bulla ethmoidalis. After the uncinate process is removed, ethmoidectomy consist of exenteration of the ethmoid cells. From Schaefer SD et al. The combined anterior-to-posterior and posterior-to-anterior approach to ethmoidectomy: An update. Laryngoscope116:509-513, 2006.

 My list of medications while in the hospital:

medications


Discharge Instructions:

GENERAL DISCHARGE INSTRUCTIONS:

For the next 24 hours or while taking narcotics:

  • Do NOT drive or operate any motorized equipment
  • Do NOT drink alcohol
  • Do NOT use marijuana products
  • Do NOT make any important decisions

CALL 911 OR REPORT TO THE ER IF YOU HAVE…Chest pain

  • Difficulty breathing
  • Sharp cramping calf pain
  • Sudden weakness to any part of your body
  • Sudden uncontrolled bleeding
  • Just don’t “feel” right or you’re suddenly nervous

CALL YOUR MD’S OFFICE FOR…

  • New, uncontrolled, or worsening pain
  • Unable to void after 8 hours
  • 101-degree temperature
  • Questions concerning any surgical dressings
  • Redness, swelling or foul-smelling drainage

ACTIVITY

The first 24 hours after your procedure, you must have a responsible adult available to assist you.

If you use oxygen at home continue to do so.

It can be normal to have dizziness, drowsiness, a sore throat, headache, or muscle aches. Call your MD if it becomes persistent.

Just take it easy for the rest of the day and gradually increase your activity level.

You may resume showering tomorrow unless your MD tells you otherwise.

DIET

Some nausea or vomiting is expected after anesthesia, call your MD if it becomes persistent.

Start with clear liquids (any liquid you can see through).

If no nausea, slowly return to eating your normal diet.

If you are nauseated, remain on clear liquids until it passes.

If your MD ordered a medicine to help with nausea, take this as directed.

If you have any questions or concerns, call your MD.

Sleep Apnea or Suspected Obstructive Sleep Apnea

You have received this handout because either you have sleep apnea or your health care provider suspects you may have Obstructive Sleep Apnea (OSA).

Obstructive sleep apnea (OSA) is also called sleep apnea. During normal sleep, muscles keep your throat open. This lets the air pass through easily. With OSA, the muscles and tissues around your throat relax and block or partially block air from passing through your windpipe. You may stop breathing for ten or more seconds, many times during your sleep. This causes your blood oxygen level to drop, which can strain the heart and blood vessels. This can also lead to high blood pressure, heart disease, and even death.

You may wake up during the night to catch your breath. You may feel tired and sleepy the next day. You may also have a hard time doing your usual activities.

It is important to know for sure if you have OSA. Follow up with your primary healthcare provider.

A sleep disorders center diagnoses sleep apnea. Treatments may include wearing a constant positive airway pressure mask (CPAP) while you sleep. Other options may also be considered. The results of the sleep study will guide the right treatment.

When you are at home and you have OSA or are suspected of having OSA:

  • Do not have alcohol or use sedative medicine before you sleep. These allow the muscles and tissues around your throat to relax and block the airflow to your lungs.
  • Sleep on your side or use pillows designed to prevent OSA. This keeps your tongue or other tissues from blocking your throat. You can also try raising the head of your bed or try sleeping on several pillows. Sewing a sock that holds a tennis ball to the back of your pajama top may stop you from sleeping on your back.
  • If you have OSA, follow your treatment plan. Special devices that you put in your mouth, called dental appliances, may help. If you have sleep apnea, you may have a CPAP machine to help you breathe while sleeping. Use this during your recovery unless specifically asked not to use by your surgeon.
  • Do not take sleep aids while taking pain medicine.
  •  If you have chest pain or trouble breathing, get help right away or call 911.

MEDICATIONS TO TAKE HOME:

medications-to-go-home

POST-OP INSTRUCTIONS:

Although the following set of  instructions were taken directly from the John Hopkins  (2016) website, they are quite similar to the directions I was provided by my own surgeon.

What to Expect After Endoscopic Sinus Surgery:

  • Bleeding:  It is normal to have some bloody discharge for the first 3-5 days after sinus surgery, especially after you irrigate your sinuses.  If steady bleeding occurs after surgery, tilt your head back slightly and breathe through your nose gently.  You may dab your nose with tissue but avoid any nose blowing.  If this does not stop the bleeding you may use Afrin spray.  Several sprays will usually stop any bleeding.  If Afrin fails to stop steady nasal bleeding then you should call our office or the on call doctor (see contact below).
  • Pain:  You should expect some nasal and sinus pressure and pain for the first several days after surgery.  This may feel like a sinus infection or a dull ache in your sinuses.  Extra-strength Tylenol is often all that is needed for mild post-operative discomfort. You should avoid aspirin and NSAIDs such as Motrin, Advil, and Aleve (see below). If Tylenol is not sufficient to control the pain, you should use the post-operative pain medication prescribed by your doctor. 
  • Fatigue:  You can expect to feel very tired for the first week after surgery.  This is normal and most patients plan on taking at least 1 week off of work to recover.  Every patient is different and some return to work sooner.
  • Nasal congestion and discharge:  You will have nasal congestion and discharge for the first few weeks after surgery.  Your nasal passage and breathing should return to normal 2-3 weeks after surgery.
  • Postoperative visits:  You will have a certain number of postoperative visits depending on what surgery you have.  During these visits we will clean your nose and sinuses of fluid and blood left behind after surgery.  These visits are very important to aid the healing process so it is essential that you attend all those scheduled for you.  There is some discomfort involved with the cleaning so it is best to take a pain medication (described above) 45 minutes before your visit.

What to Avoid After Endoscopic Sinus Surgery:

  • Nose Blowing and Straining:  You should avoid straining, heavy lifting (> 20 lbs) and nose blowing for at least 10 days after surgery.  Straining or nose blowing soon after surgery may cause bleeding.  You can resume 50% of your regular exercise regimen at 1 week after surgery and your normal routine 2 weeks after surgery.
  • Aspirin or Non-steroidal Anti-inflammatory (NSAIDs) medications:  Aspirin and NSAIDs such as Motrin, Advil, and Aleve should be stopped 2 weeks prior to surgery.  Aspirin and NSAIDs such may cause bleeding and should be avoided for 2 weeks after surgery.
  • Steroid Nasal Sprays:  If you were taking nasal steroid sprays prior to surgery you should avoid using these for at least 2 weeks after sinus surgery to allow the lining of the nose and sinuses to heal.  Your doctor will tell you when it is safe to restart this medicine.

Postoperative Care Instructions:

  • Nasal Saline Spray: Nasal saline mist spray can be used every 2-3 hours after surgery and can make your nose more comfortable after surgery.  These sprays (Ayr, Ocean, Simple Saline) are over-the-counter medications and can be purchased in any pharmacy
  • Sinus Irrigations:  You will start the sinus irrigations with the sinus rinse kits (NeilMed Sinus Rinse Kit) the day after surgery.  This must be performed at least twice daily.  Your doctor or nurse will show you how to perform the irrigations.  At first they will feel strange if you haven’t done them before.  Soon, however, they will become quite soothing as they clean out the debris left behind in your sinuses after surgery.  You can expect some bloody discharge with the irrigations for the first few days after surgery.  These irrigations are critical for success after sinus surgery!


Recovery Log:

Day 0:

Just got home from surgery a few hours ago. Sadly, I look better than I feel. Although you can’t really see it in this picture, I definitely vomited in my hair a little bit – good times. It can only go up from here my friends.

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And, in case you’re wondering, that thing under my nose is to catch all the blood coming out from my nose. Luckily I’m not bleeding that bad – at least yet. We’ll see how the day goes.

Day 4:

It’s true what they say about recovering from this surgery – it really does feel like you have the worst sinus infection ever. Like ever, ever. I feel like I’ve been hit in the face with a shovel and no, I’m not joking. My face is super swollen and painful today. However, I also fell behind on taking my painkillers because I slept nearly all day.

My face is super swollen and painful today. However, I also fell behind on taking my painkillers because I slept nearly all day. Remind me never to do that again.

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Day 7:

Had my first follow up with the surgeon today. He said that I’m healing well and that the pathology report on all the “gunk” he pulled out of my face came back as normal. However,  he also said he’s never had a patient with that much opacification have a normal report without something causing it. I’m just one of the lucky ones, I guess. Nothing odd about the way my body reacts really surprises me anymore. But I am just glad it wasn’t the result of any type of disease or a fungal infection.

Pathology Report

I still look and feel terrible, though. The doctor also did some debriding while I was at the office, so I can at least breathe a little better. My next follow-up is in three weeks from today.

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Day 10: 

Left a message for the ENT nurse to call me back regarding the odd smell in my nose. Do I need another appointment? Antibiotics? Please make this smell go away!

Really, the only way I can describe it is rotting flesh… or maybe meat… rotting something. There’s no way to hide from it – it’s in my nose. And every time I breathe in – I gag. God help me.

Day 11:

THIS just came out of my nose. It looks and feels like cartilage. I know it’s not but that doesn’t make it any better. At least it’s not the blood clots I was blowing out earlier in the week. Please don’t judge me by what comes out of my face.

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Day 12:

Went back to the surgeon to make sure I didn’t have an infection, despite the fact that I just saw him a few days ago and he said everything was fine. After what came out of my face yesterday,  I just wanted some reassurance. I’m happy to report that everything seems to be looking good.

The doctor did say that there were some debris and crusting in the right middle meatus, which he got out using the endoscopic suction and forceps. There was also a moderate amount of mucus, so he performed some more debridement as well.  Unfortunately, the grossness  I was seeing [and SMELLING] is a “normal” part of the healing process. Normal… yeah, okay.

Day 17

There are simply no words to accurately describe the true horror of watching this come out of your own face…. I’m honestly disgusted with myself.

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Day 21:

Today was my 3-week check up since surgery.

A friend of mine  drove me to the appointment and had the pleasure of watching the doctor pull some of the remaining scabs out and the look on her face was priceless. She said one of the scabs he pulled out was about a half of an inch to an inch long. Lovely, isn’t it? Hopefully, I haven’t scared her away.

Day 30:

I’m slowly starting to feel better thankfully. I still have occasional scabs coming out but they are few and far between. The scabs are also a lot less gross than they were before, although they do still smell of something terrible. I think the shape of my nose is finally looking more normal as well. Even though it has taken much longer to recover than expected, I am still hopeful that this surgery will be worth it in the long-run.

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Day 60:

I am two months post-op and, finally, I  think I am almost to the point of being completely healed. I can actually breathe better and I haven’t had anything else horrific come out of my face in a while. I’ve been keeping up with the sinus rinses every day, mostly because it seems to be helping my normal seasonal allergies as well. My oxygen saturation has also been at 99% and 10o% at my last few doctors appointments, which is a huge improvement. I really hope this means that the upcoming allergy and flu seasons will be much easier than the last few years in which I had a sinus infection almost every month or two. I guess only time will tell.

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References:

American Academy of Otolaryngology (2015). Sinus Surgery. Retrieved from http://www.entnet.org/?q=node/1429

American Academy of Otolaryngology (2016). Deviated Septum. Retrieved from http://www.entnet.org/content/deviated-septum

American Rhinologic Society (2015). Septoplasty & Turbinate Surgery. Retrieved from http://care.american-rhinologic.org/septoplasty_turbinates

John Hopkins Medicine (2016). Otolaryngology-Head and Neck Surgery. Retrieved from http://www.hopkinsmedicine.org/otolaryngology/specialty_areas/sinus_center/procedures/post_operative_instructions.html

 New York Head and Neck Institute (2016). Endoscopic Ethmoidectomy & Antrostomy: Operative Technique. Retrieved from http://www.nyhni.org/Centers-and-Services/Sinus-and-Allergy/What-are-the-surgical-treatments-of-sinusitis-and-/Endoscopic-Ethmoidectomy—Antrostomy–Operative-T

Medical Testing Update Part 2.5: New Symptoms

Continuation from Medical Testing Updates Part 1 and Part .


The weekend before my next round of cardiac testing started off pretty average, at least as far as my symptoms anyway. Having just recently recovered from the peculiar reaction I had to the one dose of the new beta blocker the cardiologist prescribed (before I was taken off of it when additional cardiac testing was ordered), I was relieved to have a so-called “break”. While I’ve learned to manage life with my usual, everyday  symptoms, the real struggle happens when these symptoms either  intensify or another one jumps in the mix, making everything that much more complicated and impossible. I kept myself busy through that Sunday afternoon, trying to catch up on everything that had fallen behind and allowing myself to forget about the news from the week before. Perhaps it was all of the stress I was under, I dunno, but that night things everything began to take a turn for the worse.

too much

Given, I had been pushing both my mind and body past the limit by adding more and more things to my to-do list. Honestly, it was way more than I was capable of handling all on my own. Half of this was my own fault for saying yes to too many things, but the other half involved stuff that was dumped in my lap last minute and they were things that I had no choice but to fit into my schedule.  Either way, there was no time for any type of rest or recovery and I knew it wouldn’t be long until my body would decide to revolt against me for treating it so badly the last few weeks. Sure enough, I didn’t have to wait that long.

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Exhausted, I climbed into my brand new bed and was so excited that I’d finally be able to get a good night’s sleep before my cardiac MRI the following morning. It must have been about 3 a.m. when I was awoken suddenly by a pain in my chest. It wasn’t a sharp pain really. More of a dull, yet stabbing, kind of pain and I noticed that I was a little wheezy and that my nose was also starting to get stuffy. Am I getting a cold? Just what I need right now, with all I have going on. Hopefully, it is just allergies, I think to myself, and  I climbed out bed to find  some medicine so that I can go back to sleep. I take some additional allergy meds, aside from my daily dose, and hope that it’ll do the trick.

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I attempt to go back to sleep, but it was very short-lived. Just as suddenly as the ” cold-like” symptoms came on, next was the onset of extreme abdominal pain, generating from both my right and left side, and gradually moving into the small of my back. Usually, the abdominal pain is focused to my left side, although occasionally I feel it either just above my belly button or lower in my pelvis, just depending on the cause that day. The amount of pain with this, though, was unreal and I have a high tolerance for stomach pain.Shortly after the abdominal and back pain set in, both the muscles and joints in my hands, arms, legs, and feet began to swell  slightly, but they instantly became very  stiff, making it nearly impossible to find a comfortable way to lay down. Still, while the way that everything set in was slightly atypical for an incoming flare-up, it was nothing I hadn’t experienced before and I just assumed I had done too much. In fact, I was actually kind of grateful that it wasn’t a cold or virus coming on.

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At some point during the night, I must have fallen back asleep. My alarm woke me a few hours later and I was actually surprised that I didn’t feel worse than I did. Most of the symptoms from the night before (well, really a few hours before) had gone away, which again, I was grateful for as the ride to the hospital is about an hour and a half away. Not to mention that the MRI itself was supposed take anywhere from an hour and a half to two hours on its own, plus the drive time back. The unfortunate part of seeing doctors in a bigger city, it makes for a really long day.

Anyways, my husband and I get in the car and start the long trek to the main hospital. About 20 minutes into the drive, more random symptoms. All of a sudden, it felt like morning medications were coming back up and becoming lodged in my chest and throat. The nausea increased so hard and so fast, it took everything I had not to throw up in the car. I was plagued by a strong, metallic taste and my muscle began to burn. And not just burn, they felt like they were on fire.

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Yet, despite all these symptoms and how uncomfortable the car ride had become, I still wasn’t overly concerned.  I was just happy at the fact that I was having active symptoms during the time a test was going to be performed, hoping it would increase the chances for additional findings.

Sadly, this is what it has come to these days –

I’ve resorted to praying for illness and pain,

just so I can get some answers.

By the time I finish the MRI, symptoms are gone. Once we got home,  I decided to take a nap since I didn’t get much sleep the night before and, yet again, I awaken to -you guessed it- the same thing. If it wasn’t so painful, I would have been extremely angry and irritated but this time around, it was hard to convince me that I was truly burning from the inside out.

The only way I can describe this sort of pain I’m experiencing is by relating it to how it must feel just moments before you spontaneously combust.

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I’m in tears with how bad it burns. My skin is literally hot to the touch, unlike earlier in the day, and starting to change color. It looks like I have been out in the sun all day tanning, even though I obviously had not. There’s no bumps, no itchiness, no rash. Just burning. And it’s coming from INSIDE of my body –  just under the skin, almost on top of the muscles. No lotion or medication can relieve it, not even the arsenal I keep in my medicine cabinet.

Maybe I didn't roll enough...

Perhaps I didn’t roll long enough. 

And not only is the burning constant and consistent throughout 75% of my body, it  continues on for hours and hours on end, lasting approximately 9 hours before it was all said and done.

As if that wasn’t enough, other symptoms begin appearing as well during this “outbreak”. My heart starts racing, making my body feel like it  is running a silent marathon inside. Next I start trembling and shaking, only making me more dizzy and nauseous, before initiating more traditional feelings of pain to the right side of my face, including the throat and jaw. When the pain moved across my chest and down my left arm, I really got scared.

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Oh my god- I’m having a heart attack.

At least that’s what I thought anyway.  In all reality, though, I really wasn’t.  

But you can see how I’d think that given the most recent test results and the amount of stress I have put myself under lately.  I guess this was a friendly reminder that I need to make rest a bigger priority. Besides, have you ever looked up the common warning signs of a heart attack in women?
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I pretty much live with these symptoms every day.

How would I ever know if I was truly having a heart attack?

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Still, I have no idea what this was or the cause of it.Thankfully, the cycle stopped after just three days of on and off random symptoms, but I haven’t experienced any since. *Knocks on wood* 

Perhaps something was caught on my MRI. I guess I’ll ask about it at my follow-up appointment with cardiology if it comes back again.

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To be continued…

Just stand still, look pretty.

But you don’t look sick…

My illness is only invisible because I decide what you can and can’t see.

Much of living with chronic illness is hidden from the outside world,

in an attempt to be as normal as physically possible.

So unless you live it yourself, you’re blind to it.

But nothing is truly invisible if you make a conscious choice to really open your eyes.

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So what does invisible illness really look like then?

Allow me to show it you.


You can see invisible illness in the things I do each and every day.

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Visible in the adjustments I make just to do everyday things.

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You can see it on the pages of my planner in which I write every appointment and daily to-do list.

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Or in my notebook that I take everywhere with me.

Otherwise, I will forget everything.

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Or the time I spend doing medical research,

hoping to find an answer for what the doctors can not find.

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You see it in the amount of caffeine I drink, just to stay awake.

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In how long it takes me to do the housework and laundry.

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Or how hard it is just to run simple errands.

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You can see it sitting on my bookshelf.

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In number of times I wash my hands in a day.

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Or the fact that a good portion of my time is spent hidden away in a bathroom.

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Illness doesn’t leave room for hobbies, much less the things that are fun.

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Invisible illness is seen in the never-ending doctor’s appointments and medical testing.

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Or the procedures I’ve had, despite knowing whether they will work or not.

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You see it in all the blood draws the doctors run regularly, trying to get a diagnosis.

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And the therapy appointments I attend just make sure I am not crazy.

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You see invisible illness in all the paperwork I have to complete and keep track of.

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In the two three inch binders that hold my medical records

which I need to bring to every doctor’s appointment.

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-one for clinic notes, one for labs/testing-

You see it in the summaries I put together to keep all my doctors on the same page.

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Or in the advanced directives, living wills, and Do Not Resuscitate orders.

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My illness is clearly visible in the medications I take  every day.

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You can see it in my oxygen concentrator and tank that help me to breath.

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In the duo-nebulizer that I keep at home

just in case an attack comes on and I can’t get to the clinic in time.

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 In my monitoring tools -in my blood pressure cuff and oximeter.

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In my heating pad and humidifier.

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My invisible illness is hidden deep inside my travel case,

full of emergency medications and supplies for when I leave the house.

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And in the lessons my husband has had to take to administer medication

or help me in case I can’t help myself.

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You see my invisible illness in the symptoms I try to conceal and hide.

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Just because it’s not easy to see, doesn’t mean it’s not there.

Do I look sick enough now?

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Because this is how I look at home, behind closed doors.

In real life, invisible illness is not so invisible afterall.

Remember that the next time you judge someone,

when you don’t believe they are as sick as they make out to be,

when you make them prove how sick they truly are,

or say “but you don’t look sick…”

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Remember to Breathe

This video will make more sense if you read the full post, but anyone who has taken prednisone  or any other steroid to stop a bad flare will understand. It made me laugh out loud. I might be delusional and over-medicated, but it’s pretty funny.


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 You’d think I would expect it by now. I’ve learned to manage and embrace the chaos of chronic illness, although it doesn’t make it any easier when its happening. Anytime I think I’ve finally gotten one step ahead, my illness is there to remind me that I am not in fact invincible, just merely invisible. 

The first two weeks of transitioning back to work went really well, although it was difficult getting back into the swing of things. I was starting to feel like maybe being back at work was going to be ok and everything would be alright. And then it hit me. A symptom that I haven’t experienced in years, at least since my early twenties. In fact, it wasn’t even a reaction that I could even say happened often enough to honestly cause any type of worry or anxiety. It was just something I was aware of in case, but avoiding the triggers kept it far from my mind. -And then it happened… three times in four days –

ANAPHYLAXIS

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The first time it happened over the weekend, I sat down to try to eat when my throat began to close up. I began to choke and for a second thought my husband was going to have to give me the Heimlich (which if you’ve ever met my husband, this is a very scary thought). Nothing I was eating contained any type of known allergy, so I thought it may be due to just general allergies or my swollen lymph nodes that had spread from my head into my neck. I took my Albuterol Inhaler, some liquid Diphenhydramine, and my daily Zyrtec and within fifteen to twenty minutes, the symptoms began to subside and I went about my day.

Two days later, again while trying to eat something completely different and unrelated. Same thing happens. Again, I follow the same routine, but it’s in my head now. For the life of me I can’t put together a connection, other than the swollen lymph nodes. And it wasn’t caused by dysphagia, it was more of my throat closing in around my food, as opposed to the usual trouble of swallowing typically caused by the dysphagia itself. Again, I don’t really worry because it doesn’t last long and I figured this was just “another symptom” and my body proving how much it hates me.

On Tuesday, the day after the second incident, I wake up feeling very weird. It’s my first day back to work after Memorial Day. I can’t pinpoint it, but it’s not the usual, “I feel terrible because of my illness, so bad in fact hat a normal person would call in sick, but this is just what my new normal feels like”.

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Oh, no, it couldn’t be that simple. It felt more like gravity had it out for me, in a “I need to hang on the wall the entire way of the hallway to make it to my work desk, because I swear the floor is trying to tell my face a secret”. I can’t see straight, my computer screen is blurry and I swear the room is moving (which being on the third floor, it may have been for all I know). I go to the health clinic on campus, just to get my vitals read and lay down for a moment. At this point I’m sweating. Why is it so hot here? It’s only like 40 degrees out… no one else seems to share in my pain. The nurse takes my heart rate which is about 120, surprise!, but my oxygen levels were stable at a solid 99, which on days like this they could be anywhere. She had me sit for ten minutes before taking my blood pressure, which she did on purpose as she says I was “too flushed” to take it when I first arrived. I would almost guarantee it would have been more interesting had she taken it when I first “stumbled” into the clinic, but oh well. She seems more concerned with the fact that my extremities are excessively cold and that I have a molted rash all the way up my arm. I tell her that in fact I feel like I about to spontaneously catch fire, as everything inside my body seems to be burning from the inside out, and that the molted rash is livedo reticularis. No I don’t know the cause, still trying to find a diagnosis. The nurse is just the sweetest woman, actually feeling concerned about the minimal amount of my symptoms that I can’t explain. She urges me to call my doctors, but I know they can’t offer any advice in this situation; and I am worried about missing work while being on “transitional duty” and accommodations. She asks if I want to rest then for a couple of hours… I accept 2o minutes. Maybe that will save my face from hitting the floor. 

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Livedo Reticularis

Needless to say, 20 minutes later of laying in a closed, dark room on an ice pack did not make anything any sort of better. Again, she tried to tell me to go home, but I thought for sure I could handle this. I’ve struggled through way worse and it was only for a few more hours. I almost crawl back to my desk, once again grateful for the wall being my support. I sit once again at my computer, but can’t stop the world from spinning. My manager is gone, everyone in my area is off for a long holiday, and I can’t get a hold of anyone who knows the consequences of leaving work in my current predicament. I thought I was strong, but I could barely stay upright in my chair. I decide to go home, praying that I don’t get fired for missing yet another day. I go home and I sleep for 5 hours, wake up to do a little homework and then back to bed. I actually considered that maybe I had Mono, but remembered that I had it back in my early 20’s and it’s really not likely that I would be having a relapse over ten years later. Again, my body hates me, so maybe this is just a new normal.

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I seem “normal” on Wednesday and am able to make my follow-up appointment for my endometrial ablation recheck. They confirm everything is fine, although I am still having mild fluid that changes colors on the daily. They say it could last a few more weeks, so we shall see. They’re also not sure why I had an episode of severe pain in my bladder shortly after the surgery that literally sent me to the ground in excruciating pain, it doesn’t sound related, but my body hates me so I’ll just accept it as that random symptom that happened one day, that may eventually come back years later. I come home from my doctor’s and go back to my midterms, finally starting to get ahead of schedule. I go to bed early to prepare myself for another day back at work.

I wake up Wednesday morning, tired as usual but nothing seems out of the ordinary. I make my coffee and plant myself in front of the TV to watch the morning news. I feel a little wheezy, but with all the rain I justify it just being my allergies and take two hits off my inhaler. I try to drink my coffee, but I can’t even get a small sip to stay down. What the heck? I get more wheezy and hit my inhaler again, two more puffs. It’s not going in, I can’t breathe. I run (well, very slowly as I’m barely getting any air in), and try to swallow some Benadryl. Half goes in and half comes back out. Good enough. I sit down, I’m feeling faint at this point. It’s going to kick in soon, I know it is. I feel my chest getting tighter and tighter. I text my husband, who is working down stairs… “help”. He’s on a call for work, he’ll be up in a few. *Don’t panic”, I say to myself. This too shall pass. My heart is beating fast, I take a reading of 145, and my SpO2 is at 85… 84…83… I feel a rash coming across my nose and cheeks, it’s burning once again. I stumble to the bathroom mirror to see if I can see what’s going on with face. I can barely hang on to the sink, so I lower myself to the ground. At this point I can feel foam building up in my throat and then out of my mouth, I’m like a rabid dog. Oh dear god, how long is this phone call. Help me. Tears are flowing from my face, am I going to die? I can’t miss work again, no not again. 

My husband finally comes upstairs, not realizing the extent to which this has escalated. I was serious when I said I needed help. He immediately calls his boss to let her know what is going on and then sets up the albuterol nebulizer in hopes that it will help open my airway. My chest opens up from the asthma attack that was set off by my lack of airflow, but my throat is closing up even more. I can’t talk at this point and I’m still foaming in my throat and mouth. My husband thinks he should drive me to work so they can verify how sick I am but ultimately then drives me to the urgent care clinic  (you’d think we’d go to the hospital, but the last time we tried a hospital when I had a pneumonia, and my oxygen levels had dropped below 80, they left me to die in the waiting room for over an hour, without even acknowledging me, and i told my husband to take me home to die. He forced me to go elsewhere although we had been turned away from so many clinics due to my levels being so dangerously low, which is how I found this urgent care clinic that we ended up going to.) going about 25 over the speed limit, which of course I’m hanging on for deal life, still trying not black out or throw up. We get there in record time and my husband drops me off in front while he parks. The lobby is FULL of people waiting, almost every seat taken, but the receptionist is actually one of the old receptionists that used to work at my current primary care’s office and know’s who I am right away and immediately runs to get help. 

They immediately take me to triage. The doctor is in fact the same doctor who was willing to treat my pneumonia, and in fact, remembers me as well. I can’t talk, but based on my history, they assume it’s asthma related and give me a duo-nebulizer treatment. Again, it helps my asthma but doesn’t even touch the swelling in my throat. At this point I’ve had 6 puffs on my albuterol inhaler, an albuterol nebulizer, and duo-nebulizer, I feel like I am shaking so hard that I am going to knock over my chair. Luckily, my oxygen levels come up from the treatment, but they figure it has to an allergic reaction at this point. My heart is racing so high, they don’t want to risk epinephrine at this point. The give me a shot of solu-medrol, which is a steroid, as I have already taken allergy meds today as well and it does start to help shortly thereafter. When I can finally talk, she asks me about what happened and if I had any exposure to any known allergens. Nope, hadn’t eaten anything and couldn’t even drink my coffee. She points out the rash on my face, which clearly is typical of the “lupus butterfly rash”, as well as the livedo reticularis. But my ANA is ALWAYS normal… just like everything else. But clearly this is in fact NOT NORMAL. We thought maybe it was from all the radiation and contrast materials from all the medical testing I have gone through, but my last test was almost a week before and not likely the culprit. I mentioned the swollen lymph nodes, but since the time I got the injection, they had already gone down substantially on both my head and my neck, so no answers there. Again, my body hates me and I’m just a medical mystery as usual. But she believes me, she knows  I am in fact NOT OK. I love her, I tell her I wish she could be my doctor. Unfortunately, she doesn’t work in primary practice, but did give me a name of a doctor to try with my insurance. 

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She discharges me once I am stable, with a prescription to start Prednisone (which always helps my flares) and an epi pen, which I haven’t had in years. Due to all the struggling, I unfortunately am left with lock-jaw and can barely open my mouth more than about a quarter of an inch. I’ve missed work again, but by the time we leave I have just enough time to make my afternoon therapy appointment, where I talked funny from the lack of movement in my jaw, and then followed that up with my dental appointment that had to be pushed out months.. And of course that was interesting, trying to get x-rays when you can’t physically open your mouth on your own, but the technician was so understanding and helpful, literally maneuvering it for me and was able to even do my cleaning. My dentist was amazing too, offering a specialized toothpaste to help my front teeth that are not quite bad enough to need fixing at this time, but have become extremely sensitive due to extreme enamel loss (which have literally discolored some of my teeth near the gum-line), more than likely due to my lack of nutrition and amount of acid breaking apart my teeth from being so sick. 

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My friend jokes that I must enjoy torture, keeping all these appointments after the morning that I just had, but it was just business as usual. I finish up my night, wired and spinning from all the medication running through my tired body.  I have a love/hate relationship with Prednisone. It stops the pain, I can eat, and I feel almost normal. But there’s the side effects and no doctor will prescribe it long-term because they can’t justify the risk at this point with my symptoms and no diagnosis. I can’t sleep as a result and my muscles keep spasming (most likely because of the injection), so I do my homework and prepare for midterms . I guess I do like to torture myself, in a way.
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My therapist keeps telling me I am strong, that no one person could keep going like I have been. She asks me where I find the strength to keep fighting. I tell her, once again, I really don’t have a choice. It has to get done. But I find my strength in telling my story through this blog.

And in the lessons I learn from other’s who share their struggles with me. I am neither the strongest nor the weakest fighting this same battle. And I’m not going through it alone, not anymore.

My strength comes from this community, inflicted with chronic and invisible illness.

The true heroes who wake up everyday and keep going, despite everything, because they believe there’s a purpose to this life. a3b8fa790ec30283e091f75a24eb265f

And in the end,

I owe it to all the people who take the time to listen,

to remember,

 and

believe in my experiences.

It is for them that I can never stop trying.

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Ultimate Survival Guide For When Everything You Eat Makes You Sick: Trigger Foods

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Eating for me is a complicated process. I have to think in-depth about the effects of what I’m about to put in my body and weigh the pros and cons about how it’s going to make me feel. I also need to know what’s in it to see if it will call any type of allergic reaction. In the last twenty-four hours alone, I had mild anaphylaxis twice. Not sure if this was from my swollen lymph nodes that have now moved farther south into my neck or if it was caused by the food. Seeing as I don’t eat a whole lot or a whole variety, I could have easily developed an allergy or reaction to food that I used to always eat with no problem, but suddenly can’t have due to the lack of exposure I’ve had to it in recent times. Add on top of all of this almost never experiencing the act of “feeling hungry” -and only know it’s time to eat when I’m weak and about to fall to the ground.

Considering my list of trigger foods is way longer than what I can currently consume, without becoming ill, it’s easiest to have a list of the things I can eat. I will say, though, it’s an ever-changing data base and is adjusted to how I feel that day. For example, I used to live primarily on vegetables and fruit since almost all meats hurt my stomach. Then this past January, suddenly, I stopped digesting any part of my vegetables. It would go in and come out the same. So off the list it goes and time to readjust. So what is one to do?

Step 1: Keep in stock the basics.
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Mint is great at helping all kinds of ailing stomach pains. I always make sure I have some on me, as well as next to my bed for when I wake up with severe nausea and can’t move without wanting to throw up.

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Ginger Ale is a staple that I keep in my house for the occasions when I really need it. I’m personally not a fan of “real” ginger and “ginger mints”, as I think the taste is too strong. I’m more nauseated by the strength before it has time to help, but I know it works for a lot of people. Personally, I like the store brand soda’s like Canada Dry and Seagrams, although they do have sugar and can upset your stomach even more. You just have to see what works for you.

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Oh saltine crackers. You have been my hero on so many occasions when I’m unable to digest anything. Salty, bland, and simple.

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Also, salty, bland, and simple. Plus they’re not as “dry” in your mouth as saltines and you can easily break of tiny pieces without making a mess like you would with crackers.

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I know this seems like an odd choice for when your nauseated, as it’s greasy and not very healthy. But when I’m having problems with acid in my stomach, have had diarrhea, or  am feel dizzy and dehydrated, these chips are plain but loaded with salt. Lots of salt. If you can follow it with fluids, then I notice improvement with retaining fluids in my body. 

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Since we’re talking about water and water retention, we all know that water is essential in life. Being chronically ill, water is also important in keeping healthy, hydrated, and balanced. I try to drink alkaline water when possible because of all of its health benefits, but any water will do. 

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Obviously, for hydration and electrolyte balance. Often when you lose fluids quickly when you’re sick, the first thing you want to do is drink water to stay hydrated. I used to only drink water (and coffee) but my eyes would constantly twitch and I’d still feel awful. My doctor told me it was from the effects of not replenishing my electrolytes. I was out of balance and water only continued to flush my system. I prefer the G2’s, as they are lower calorie, less sugars, and are not as strong as regular Gatorades.

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For days when I can handle more substantial food, I like mashed potatoes. Actually, I love ALL potatoes, but the instant potatoes are easy to keep in the cabinet. I find if I buy mostly fresh foods, then they expire or go bad before I feel good enough again to eat. 

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I also keep these handy for the “good” days. They don’t hurt me too bad, most days. And they last on the shelf a long time. They fast and easy too.

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Last but definitely not least. Now I know caffeine can cause different reactions for everybody, but I need my coffee. It helps keep me going on those days I didn’t sleep because of pain or have to fight throughout the day to make it through all I have going on. Luckily, this is the one thing that doesn’t bother my stomach. Sadly, it’s a large part of my daily calories, but it helps keep up my current weight.

Step 2: Try an elimination diet and keep a food diary.

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If you are not sure what is causing the pain and discomfort after eating, try eliminating pieces of your normal diet to see if you can pinpoint the problem. Keep a food diary like the one above. Track everything and read the nutritional facts of what you are eating. You may not know that something in it can be a trigger for your symptoms. Share it with your doctor, maybe they can notice a pattern that you may not have even thought of.

When I started having abdominal pain again, six years ago, I tried multiple elimination diets: Gluten Free (even though I tested negative for Celiac’s Disease), Lactose/Dairy Free, Low Sugar, High Protein, etc. There’s so many allergies out there that can be the cause of excruciating symptoms. “The eight foods included in food allergy labeling account for an estimated 90 percent of allergic reactions. These eight foods are:

  • Milk
  • Eggs
  • Peanuts
  • Tree nuts (such as almonds, cashews, walnuts)
  • Fish (such as bass, cod, flounder)
  • Shellfish (such as crab, lobster, shrimp)
  • Soy
  • Wheat

Most food allergies start in childhood, but they can develop at any time of life. It isn’t clear why, but some adults develop an allergy to a food they used to eat with no problem. Sometimes a child outgrows a food allergy only to have it reappear in adulthood.

If you have a food allergy, you’ll need to avoid the offending food. An allergic reaction can quickly put your immune system into a state of emergency, affecting many organs in your body. For certain people, even a tiny amount of the food may cause symptoms such as digestive problems, hives, facial swelling or trouble breathing.

Some people with a food allergy are at risk for a life-threatening reaction (anaphylaxis) that requires emergency treatment.

Don’t ignore a reaction that occurs shortly after eating a particular food. See your doctor to find what’s causing it. Even if you’ve had a relatively mild reaction in the past, subsequent allergic reactions may be more serious. Get emergency treatment for any severe food reaction.”

Reference: The Mayo Clinic

Step 3: If nothing else works.

Or if you having a really bad flare up, try a low residue and low fiber diet.

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This a great list to get started with. It’s not meant to be a long-term solution, but eating something is better than nothing, and following for a few days gives your digestive system time to relax and reset itself.

Step 4: Look into other options.


Try Juicing.
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Or the FODMAP diet.

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It has been gaining a lot of attention recently for being one of the best diets for functional disorders.

Also, when all else fails and you can’t find relief, meal replacement shakes will at least get some essential nutrients to keep your body going. 

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There’s so many on the market now. Some are better than others, but find the best one that fits your budget and you can stomach on the bad days when you need emergency nutrition.

But when push comes to shove, and nothing works

and you truly can’t maintain a normal weight or nutritional balance

without becoming violently ill,

then there are more extreme options available, but only by your doctor:

Feeding tubes (with difference placement depending on need/situation)

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Note: Not all of the things I listed will work for everybody, but these work for me. But no matter what that is, keep it in the house at all times if possible so that if you’re having a bad day, it’ll be there waiting for you and you won’t have to fight the pain to get what you need.


Also Note: I am also not a doctor or a dietitian, so please consult a professional to discuss if any of these suggestions are right for you and your condition.