What Is The Best Way To Cope With Pain?

Pain is defined as being an experience of both physiological and psychological discomforts marked by unpleasant or uncomfortable sensory symptoms resulting from some sort of damage or injury (Gurung, 2014). The origin of pain can come from a variety of sources and there are numerous ways that individuals can cope with pain, consisting of either psychological or biological interventions. Certain pain management therapies may work better than others depending on the source and duration of pain, as well as an individual’s tolerance or threshold for the pain. According to Gurung (2014), there are three primary classifications of effectively managing pain: physiological treatment, psychological treatment, and self-management techniques.

Physiological techniques for managing pain, for instance, often involve the use of pharmacological or chemical management methods, traditional or holistic treatments (e.g. acupuncture), and surgical interventions. Medicinal therapies are generally one of the first approaches used for pain management, particularly if the ailment is caused by acute pain triggers (e.g. broken bones, sprains, illnesses, etc.), and generally comprise of pharmaceuticals called nonopioid, opioids, and adjuvants. Adjuvants are medications that are prescribed to manage pain but are not solely listed for that purpose. These medications are used primarily because they have shown some effect in helping to manage pain, although they may elicit different physiological responses. Some common example of adjuvants includes benzodiazepines, corticosteroids, antidepressants, and local anesthetics (Gurung, 2014). Nonopioids, on the other hand, include many of the over-the-counter pain relievers, such as ibuprofen, aspirin, or acetaminophen. According to Gurung (2014), “these medications act locally, often at the site of pain” (p. 291) and provide quick-acting, short-term relief in milder forms of acute pain. However, nonopioid drugs are generally not recommended for continued use due to the many long-term side effects associated with these drugs and their inability to maintain pain relief over time.

A stronger category of medication, known as opioids or narcotics, are much better suited for more severe pain management, particularly for those undergoing a surgical procedure, have suffered a severe illness or injury, or are living with a chronic or debilitating illness. Some well-known examples of opioids include oxycodone, codeine, morphine, and methadone. Opioids are the drug of choice for moderate to severe pain, given their level of effectiveness. Morphine, for example, works by binding to the “receptors in the periaqueductal gray area of the midbrain and produces pronounced analgesia and pleasant moods” and mimics the body’s natural response to coping with pain (Gurung, 2014, p. 291). However, opioids come with their own set of side-effects that are often much more severe than nonopioid medications. For instance, there is a much higher risk factor for overdose or addiction, and individuals who take opioids for chronic pain management often build up a large tolerance to these types of medications. Therefore, in order to gain the same benefit, patients also need to increase the dosage of the drug which places them even further at risk for the potential of overdose or addiction. Nonetheless, the controversy over the effects of long-term opioid use is a hot topic of debate in both the medical and chronic illness communities.

Still, there are a number of physiological techniques, outside of medications, that also assist with pain management strategies. Some examples include acupuncture, surgical interventions, and the use of either hot and cold compresses (and even alternating the two). Acupuncture, for example, works to manage pain by releasing blocked energy associated with pain and has been used in Traditional Chinse Medicine for years (Gurung, 2014). Alternately, surgical treatments can also help in decreasing levels of pain by removing the conduction of many of nerve fibers throughout the body that directly or indirectly transmit pain signals to the brain. However, while surgical approaches typically provide relief of pain for a period of time, improvement does not seem to provide a long-term cure since nerve fibers’ have the ability to regenerate. Still, while the majority physiological techniques offer relatively good methods in managing acute forms of pain, psychological strategies for the management of pain are likely to be more effective for handling chronic forms of pain.

Research into various psychological techniques shows that many of the pain pathways found within the human body are directly linked to the brain, ensuring that pain is very much a psychological process in addition to being a physiological one as well. A person’s mood can greatly impact how individual’s cope with or experience pain and altering one’s cognitions about chronic pain is, therefore, detrimental to obtaining control of individual levels of pain. For instance, when a person is undergoing chronic stress or is depressed, they are likely to feel more pain. According to Gurung (2014), “negative mood states can lead to biased forms of thinking. These cognitive biases can accentuate the feelings of pain and need to be modified” (p. 294).  Often, these behavioral modifications come from the use of psychological techniques (e.g. hypnosis, distraction methods, and relaxation techniques) in a similar manner to the practices associated with coping skills for dealing with stress. Distraction techniques, for example, are helpful in handling pain because it diverts attention away from the problem, similar to stress management techniques, and includes the use of some common practices like guided imagery, meditation, or watching television, reading a book, or talking with a friend over the phone. Likewise, biofeedback is also helpful in identifying pain triggers through observing physiological responses to pain through the use of machines or computers and then teaching relaxation techniques in order to assist individuals in gaining control of their physiological reactions to pain.

Although both psychological and physiological approaches to pain management procedures are helpful in their own ways, neither necessarily define the “best method” for handling pain—at least, not alone. Essentially, the primary problem in defining a standard method of pain management is the fact that the experience of pain is mostly subject. Although tests are available to measure specific fragments of pain, currently there is no exam available that can objectively measure pain with any amount of accuracy. Also, since both physiological and psychological factors influence the involvement of pain, it’s hard to distinguish which variables are positively or negatively altering elements of pain and individual levels of pain can change day-by-day. Given the number of factors involved, perhaps a better method for managing pain is to utilize a dual approach by combining both psychological and physiological techniques.

One way to combine both pain management strategies is through a technique known as self-management, which has been particularly supportive of individual’s living with chronic episodes of pain. Self-management programs are defined as “treatments for pain relief that make the patient with chronic pain the one with the most responsibility for making the change rather than the doctor or the health professional staff” (Gurung, 2014, p. 452). Self-management programs for chronic pain are effective because they focus on the emotional aspects of pain, outside of the physiological response, by teaching patients to change their thoughts or behaviors to better cope with their pain – mainly by focusing on various strategies to improve one’s overall quality of life. According to Gurung (2014), the main goals of self-management programs are to:

  1. Provide skill training to divert attention away from pain;
  2. Improve physical condition (via physical reconditioning);
  3. Increase daily physical activity;
  4. Provide ways to cope more effectively with episodes of intense pain (without medication);
  5. Provide skills to manage depression, anger, and aggression; and
  6. Decrease tension, anxiety, stressful life demands, and interpersonal conflict. (p. 297).

Gender Bias of Pain:

It’s important to point out a very significant problem currently plaguing patients across the country — the gender bias in medicine. Although this problem is not exclusive to pain management, the gender bias in medicine is alarming because many women are often left without the proper care essential to maintaining a good quality of life.

It’s become far too common that women’s complaints of pain or illness are minimalized by the medical professionals they turn to for help, often implying that women are overly dramatic in their interpretations of pain. Doctors often label many of the pain symptoms found in women as being psychosomatic or “all in their head” when a diagnosis is not easily obtained. This bias becomes even more evident in women who have chronic pain, who continue being called a “drug-seeker” when asking for pain relief. “Women are more likely to have chronic pain conditions that are more difficult to diagnose and treat (TMJ Disorder, fibromyalgia), and in many cases, these are treated as mental or hormonal rather than as a disease or disorder” (Stacey, 2012). Likewise, many doctors still foster the ideology of the gender bias by suggesting that women are affected by pain harder than men.

According to Gurung (2014), “women reported significantly higher pain in most categories with the most significant differences in patients of the musculoskeletal, circulatory, respiratory and digestive systems, followed by infectious diseases, and injury and poisoning” and “men report less pain, cope better with pain, and respond to treatment for pain differently than women” (p. 274) However, at least in their initial presentation, these statements are somewhat misleading. At best, research is relatively and widely varied. Recently, an article I came across by Dusenbery (2015) called Is Medicine’s Gender Bias Killing Young Women? described this phenomenon in detail:

This pervasive bias may simply be easier to see in the especially high-stakes context of a heart attack, in which the true cause usually becomes crystal clear—too often tragically—in a matter of hours or days. When it comes to less acute problems, the effect of such medical gaslighting is harder to quantify, as many women either accept misdiagnoses or persist until they find a health care provider who believes their symptoms aren’t just in their head. But it can be observed indirectly: In the ever-increasing numbers of women prescribed anti-anxiety meds and anti-depressants. In the fact that women make up the majority of the 100 million Americans suffering from (often under-treated) chronic pain. In the fact that it takes nearly five years and five doctors, on average, for patients with autoimmune diseases, more than 75 percent of whom are women, to receive a proper diagnosis, and that half report being labeled “chronic complainers” in the early stages of their illness. Then there are the diseases, like chronic fatigue syndrome and fibromyalgia, that exist so squarely at the overlap of the Venn diagrams of “affects mostly women” and “unknown etiology” that they’ve only recently begun to be recognized as “real” diseases at all.  (para. 20)

There are some valid explanations for why pain across gender is inconsistent. In a study by Hamberg, Risberg, Johansson, & Westman (2004), for instance, it was found that “proposals of nonspecific somatic diagnoses, psychosocial questions, drug prescriptions, and the expressed need of diagnostic support from a physiotherapist and an orthopedist were more common with females” (para. 3). However, laboratory tests, physical examinations, diagnostic testing, and pain management were offered to men more often than it was for women patients. Additionally, the differences offered in treatment could result in the many inconsistencies demonstrated throughout the literature as to how men and women are different when it comes to pain. Furthermore, the gender difference may be the direct result of our modern culture expect men and women to experience pain. We often encourage women to express their feelings about pain, yet make them feel like they are crazy or are behaving like a hypochondriac in following the expectation. Alternately, society tells men to hide their emotions. So of course, it’s easy for “science” to say that women have more reported pain than men because females are more likely to confess about their experiences of pain, skewing the results and furthering the gender bias. At the end of the day, I do believe that Dusenbery (2015) stated it best by saying, “call me crazy—hysterical, even—but I don’t think you should have to feel that empowered just to receive proper medical treatment” (para. 20).

References

Dusenbery, M. (2015). Is Medicine’s Gender Bias Killing Young Women? Retrieved on Feb 16, 2016, from http://www.psmag.com/health-and-behavior/is-medicines-gender-bias-killing-young-women.

Gurung, R. A. (2014). Health Psychology: A Cultural Approach (3rd ed.). Belmont, CA: Wadsworth.

Hamberg, K., Risberg, G., Johansson, E.E., & Westman, G. (2004).  Gender bias in physician’s management of neck pain. Journal of Women’s Health & Gender-Based Medicine, 11(7): 653-666. doi: 10.1089/152460902760360595.

Stacey (2012). Is There Gender Bias in Pain Management? Retrieved on February 16, 2016, from http://www.tmjhope.org/gender-bias-pain-management/


To find out how you can receive FREE online therapy to manage chronic pain, please visit the following article on the Better Health website:

https://www.betterhelp.com/advice/therapy/get-free-online-therapy-should-you-use-free-counseling/

Prescribe pills to off-set the shakes, to off-set the pills, you know you should take it a day at a time…

When you’re sick, you go to the doctor.

You expect them to diagnose the problem,

and give you a pill to make it all better

In chronic illness, however, it doesn’t happen that way.

Chronic means long-term, ongoing, and long-standing.

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In many cases, there is no cure.

Or there is no diagnosis to treat properly.

Or they’re medicating the wrong disease due to misdiagnosis.

Sometimes the only option is to treat the symptoms.

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In chronic illness, you often have a team of doctors of various specialties.

They all have their own ideas on how to treat or manage your disease.

Prescriptions for this, pills for that.

And before you know it, your list of medications is a mile long.

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It’s no surprise then, that medicine is one of the most important components

to managing chronic illness.



Here are some tips and tricks that I have found to be helpful with medication management:


How to Keep Track of Medications

Write down all of your prescriptions. 

Make a list of all the medications you are currently taking (for both a daily basis and  as-needed basis) and keep a copy at your home.

Make sure you have the name of the medication, the dosage, and how many times a day you need to take it. It’s helpful to leave room for notes, where you can write down possible side-effects or any interactions with other medications.

There’s a ton of free printables available on the internet that you can use for a medication tracker. You can also make your own list in Excel. I personally like to keep one copy on the computer and one paper copy (especially when starting new medications, so I don’t forget when and how to take the new meds).

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Let family or others know where they can find a copy of this list, just in case there is ever an emergency and they need to notify emergency responders about your current medications. 

Bring the list to all your appointments.

It is important for all your doctors to know which medications you are currently on and which ones that have been stopped.

This will also help to make your appointment (and overall management of your condition) faster and more efficient as well. 

You won’t have to try and remember off the top of your head when asked, you’ll know the exact dosage your taking, and it can be entered into the computer without you having to spell it out for the office staff. 

Plus, there’s never enough room provided on the forms medical offices ask you to fill out.
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Help in Remembering to Take Medications

If you’re anything like me, the more and more medications I am prescribed, the harder it is to keep track of which ones I have or have not taken throughout the day.

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When I first became sick I only took medications as needed, which were easily kept nice and organized in the medicine cabinet. As time went on, medicine was needed on a daily basis. After three daily medications were on the list, I opted to buy a daily pill organizer so I wouldn’t forget if I took my medication or not. Had a few too many close calls of almost taking a double dose and didn’t want to risk it any longer. 

I purchased a daily pill organizer just like this one. 

It was cheap, small, and did the job.

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After outgrowing this organizer, I now use this one as a travel case that I keep in my purse.

I put a few “emergency medications” in each slot, which I have relabeled with the name of the medications, versus day of the week.

Of course, as my condition progressed, more medications were prescribed and I had no choice but to upgrade my pill organizer. Not only were my pills no longer fitting into the single compartments, but I was getting confused as to which pill was to be taken at what time of the day and what medications went together (and which ones should be spaced out).

I bought this organizer off EBAY.
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I think it was under $5.00, and so far it has worked great for what I need it for.

There are four sections to each day: Breakfast, Lunch, Dinner, and Bedtime.

I only keep my daily meds in here, not the “as needed” pills. 

Other ways to organize medications:

Pill Packs 

I learned about pillpack.com from one of my readers, who passed along some information hoping to help with the management of my illness. 

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I love the idea behind the pills packs and it seems like an easy way to keep track of all your medications, considering they come individually packed and labeled with time, date, and what pills are included. You are also able to separate the packets into daily pills and “as needed” pills, as well as adding in non-prescription medications (such as vitamins, supplements, or pain relievers). Plus it’s delivered to your home, making it extremely convenient for those us of who have trouble leaving the house.

Pill Pack does accept most insurance plans, so you only have to pay your insurance deductible and shipping is always free. Unfortunately, my insurance isn’t accepted as of yet, but I’m hoping it will sometime in the future because this service would be really helpful in managing all of my medications (especially since I’m likely to outgrow my current system here soon). Plus I hate waiting at the pharmacy for refills. 

If you’d like more information, please visit pillpack.com/info or you can email hannah.t@pillpack.com

For time sensitive medications:

There are some newer pill organizers that have an alarm inside that lets you know when it’s time to take your medicine. They’re a little more pricey but definitely high tech and efficient.

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However, you can also download an app or set an alarm on your phone for a medication reminder if you wanted to stay on the cheaper end and use a more standard pill organizer.

Ways to disguise and carry medications with you:

Especially useful if you are worried about someone stealing your medications (particularly controlled substances).

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Cabinet Organization of Medications:

Of course, this depends on how many medications you have and how many of those are taken on a daily basis. I am looking to do something similar for my medicine cabinet and/or under the sink for any first aid materials and over the counter medications.

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How to Manage Side Effects

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“Nearly all medications have side effects. When you begin taking a medication, it is important to know:

  • What are the potential side effects?
  • If I experience a side effect, what can I do?
  • Which symptoms should alert me to consult my healthcare provider?

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Actions you can take

It is helpful to know what you should do about a possible side effect from the start. You should also know which side effects are safe to treat yourself and when to contact your healthcare provider. There are simple steps you can take to manage common side effects:

  • Record any side effects – keep track of your side effects and talk about them with your healthcare provider during your next visit.
  • Nausea/Upset Stomach – take medicine with food or milk – however, be sure to check with your provider that the medication may be taken this way. Also, avoid spicy foods and heavy meals. Drink water. Check with your provider or pharmacist about using over-the-counter medications.
  • Diarrhea – Avoid caffeine, highly acidic foods and beverages, foods high in fiber, and spicy foods. Check with your provider or pharmacist about using over-the-counter medications.
  • Constipation – Drink plenty of fluids; drink lots of water. Eat foods high in fiber such as fruits and vegetables. Exercise. Ask your provider or pharmacist about using over-the-counter medications.
  • Dry mouth – drink water. Suck on ice chips or sour candy to promote more saliva.
  • Fatigue/lack of energy – eat a balanced diet, get plenty of exercise, and sleep a minimum of 7 hours a night.” (rxoutreach.org)

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Other tools to monitor side-effects

My favorite app that I have on my phone that helps with managing my medicine and potential side-effects or interactions is the drugs.com app. You can lookup drug information, identify pills,  set medication reminders for refills or to take your pills at a certain time, check interactions, and store personal medication records and history.

It’s the easiest and most user-friendly app I have found so far. I get the most use out of the “my drug list”. It’s handy if you forget your medication list for a doctor’s appointment and it gives you warnings as to what medications are high, moderate, or low risk of interacting, as well as how your medications interfere with your listed medical conditions. Here are a few screen shots from my personal application:

This screenshot shows the general tools available in the application. 

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In the “my drug list” section, it lists names of medications, dosages, and gives you color warnings (the triangles) to any alerts of potential interactions.

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You can also click on each warning for more information.

If you click from here, it will tell you the exact problems

that can occur with each potential drug interaction.

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Ways to Prevent Medication Errors

Medication errors CAN and DO happen! 

Your prescription goes through many sources and people before you can take it:

*The doctor writing the prescription.

*The nurse if the prescription is called into the pharmacy.

*The pharmacy technician who processes the order.

*The pharmacist who count the pills and then issues the prescription.

*The distributor/manufacturer of the pharmaceutical.

Not to mention your own potential to cause human error.

It’s important to be aware of the possibilities and take steps to prevent it much as possible. Your life could be at stake if you don’t.

Ways to prevent medication errors:

Ask your doctor questions if you are receiving a new prescription.

What are the side effects?

What is the benefit of taking this medication?

Will this medication interact with anything I am currently on?

What signs or symptoms should I be looking out for?

Read the prescription paperwork  carefully and check for accuracy.

Does all your information look correct?

Name, address, phone number?

Type of medication and dosage?

Doctor’s signature?

Use the same pharmacy for all prescriptions.

This will help to keep you not only organized, but the pharmacist will be aware of any potential drug interactions.

Talk to the pharmacists when you pick up the prescription.

They know medicine better than anyone else. 

Ask questions.

Build a relationship with them.

Call in prescription refills at least a week or two earlier.

Prevents rushing to have it filled (both from the doctor and the pharmacy), which can create a greater potential for errors to occur.

You won’t run the risk of running out of meds, which can cause withdrawal symptoms, further health problems, and even death in some cases.

Always check the bottle’s label to make sure it’s correct and count the number of pills when you first pick up a prescription.

Other medication tips:

Never stop a medication without talking to your doctor first.

Take medications as prescribed and follow the directions on the bottle. This includes finishing the entire prescription (especially with antibiotics) and when tapering medications (like prednisone).

Make sure you know the possible side-effects, including the signs of an allergic reaction to the medication.

Trust that the doctors have weighed both the pros and cons of prescribing a particular medicine and that they only prescribed it because they believe it can help to alleviate your symptoms.

If you’re not at all comfortable with a certain medication, discuss it with your doctor.

When in doubt, call the doctor or the pharmacists and ask. Better safe than sorry.

But most importantly, remember that:

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Take It From Me, It’s Not The End…

I try to remember to breathe in times like these, but that’s easier said than done.

I think the stress of everything I have going on in my life right now is really starting to wear me down.

I just feel like I’m stuck in this horrible cycle that never ends.

It’s a constant fight to keep going…

keep looking for answers…

keep everything afloat…

But I’m just so tired.

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It doesn’t help my symptoms have been out of control


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and that my medical appointments last week weren’t as positive as I had hoped for.

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On Thursday, I had a follow-up with my GI in the morning, followed by a CT Angiography of the Abdomen/Pelvis  ordered by my vascular surgeon to evaluate the extent of the Nutcracker Syndrome.

I have been struggling a lot lately with dealing with the “diagnosis” of  Lupus and all the other potential disorders the doctors were planning to evaluate, as well as having an extreme increase of symptoms, so obviously my emotions are all over the place. I was FINALLY starting to feel good about everything, ready to manage life with multiple, incurable conditions. But of course, everything turned upside-down once again.

My body has been trying to fight me ever since the changes in medications on June 1 when I saw the rheumatologist/immunologist. I figured I was just adjusting, but it just kept getting worse day by day. I’ve had to miss work AGAIN because I haven’t been able to more than 2 feet from a bathroom for more than 15 minutes at a time, which is being generous. Plus I’m getting new patches of hair loss, new and increased amount of skin rashes, nausea, dizziness, episodes of falling over, etc. etc. It’s been a nightmare. I finally call my boss and let her know how awful I am doing and I need to see the doctor to get control of my symptoms before I can even consider coming to work. So I am back out on leave, hoping to get approved for payment this time around, now that I have a diagnosis.

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I schedule with my Primary Care to do the paperwork but wasn’t able to get in until this past Friday (almost two weeks out). So I message the rheumatologist/immunologist and tell her about my increasing symptoms, as well as inquire about the remaining blood tests that were outstanding and were supposed to explain an abnormal test result. She replies that none of these symptoms are typical with the new medications, but I can stop them if I want. There’s no mention of the bloodwork. I figure I would just ask the GI doctor when I did my follow-up appointment since they work in the same practice. (They’re even in the same suite and use the same nurses.) No problem.

My follow-up was set for 7:30 AM Thursday morning, with the CTA scheduled at another hospital at 10 AM (both in Denver, about an hour away). I’m instructed for the test to not have caffeine beforehand, as well as no food or water for four hours beforehand. I didn’t even bother to go to sleep the night before, as my symptoms kept me up all night in pain, and I had to be up at 4 AM to get ready and make the drive anyways. So here I am A) exhausted, B) caffeine deprived, and C) petrified that I won’t be able to make it the full hour in the car with how severe my symptoms have been lately. My anxiety was high, to say the least. I also was unsure how this appointment was going to go, considering my last GI tests came back normal. So I knew as soon as the GI doctor came in to the exam room and started off by asking me, “So what, primarily, are your biggest concerns about your symptoms?”, that this appointment was going to be different than all the others.

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I tell her about my increase in symptoms.

How I spend every moment either in or near a bathroom.

How my skin is erupting everywhere.

The exhaustion I feel.

How my body is destroying my life.

And how frustrating it is to be so sick every single day,

but test after test is normal.

It makes no sense.

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She questions me on my stress, past medications I’ve tried for the IBS, and what elimination diets I have tried. 

I tell her I’m starting to believe that it’s not a problem IN my stomach at all.

Could the Lupus cause problems in my GI tract without showing up in testing?

Or the dysautonomia?

What about that abnormal blood test?

Or the ones that they kept saying they were waiting to come back?

She’s quiet while she looks through the records.

She sees the abnormal test but has no idea what a viper venom test result means.

Everything else came back normal. No one had called me?

Nope. Been almost three weeks.

She mentions that the rheumatologist/immunologist noted in my chart that she DOES NOT suspect ANY autoimmune condition at this time and my new medications were for allergies, including the hydroxychloroquine.

No, that’s is NOT what she told me. My husband chimes in as well.

She thinks it’s odd, considering hydroxychloroquine IS for Lupus, not allergies.

She’s gonna send her a note, something is not right.

No mention of the dysautonomia discussion either.

Why am I still on this med if it’s definitely NOT Lupus?

What is this abnormal blood test?

I need to know! I’m on leave from work AGAIN. This will impact my job.

My primary care doctor noted it. My neurologist noted it. The vascular surgeon noted it.

She says she did receive their reports and thought it was odd they had Lupus noted, but there was no record in their system from the diagnosing doctor.

I’m about to panic…

She decides she wants to run my cortisol levels to see if it’s “stress” or something else and a stool culture to rule out parasites or infections, although my stomach biopsies were all normal. She’ll also order a new PPI to see if that helps. There’s nothing left to check or try at this point. I want to cry, I can’t breathe.

I wanted to tell her, “Don’t give up on me, I can’t LIVE like this.”

But I didn’t.

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Instead I sit in the chair, quiet. I’m at a loss.

How could this be stress?

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These were taken in the office AT that appointment. She watched it happen before her eyes. But there’s no explanation. No reason for the symptoms. 

I try and keep it together while I am in the office. I go upstairs and get my blood drawn… again. The phlebotomist is rough and bruises me. I swear, even my veins are tired. Then we drive to the other hospital for my testing. The ride starts off quiet, but I feel my blood boiling….

How DARE she not put it in my record.

How could she say that I have NO AUTOIMMUNE symptoms? 

Why am I taking this medicine, which COULD be making me sick?

She told me I could quit it if I wanted… but that it was both the best and safest medicine for me.

SHE’s the one who mentioned that it DEFINITELY was AUTOIMMUNE.

And she was the FIRST of two specialists to mention the dysautonomia.

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All my planning. 

All the books I ordered.

The research I’ve done.

The people I’ve told.

Now I don’t have Lupus?!?!?

My husband consoles me. He says she probably didn’t remember, she’s always going in multiple directions.

It was probably a mistake, the GI doc will message her and get it straightened out…

I weep.

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I don’t want to do this test. 

I am tired. I don’t feel good. I’m heartbroken.

I almost vomited in the machine the last time. 

What’s the point?

The vascular surgeon doesn’t believe in Nutcracker Syndrome.

It’s rare and doesn’t make sense.

But I might be that special case…

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decide to do the test anyway.

I’m weak from lack of sleep, illness, and crying. I’m shaking because I don’t want to go through what I did the last time I had a CT. I felt so sick with the contrast on the normal CT Scan, and my face got “burned” and my lymph nodes swelled. At least there wasn’t barium involved this time. 

The hospital is brand new, it’s beautiful. It looks more like a boutique hotel. Or a mall. Some kind of fancy. I tell the radiology technician about my issues last time with the contrast. She’s never heard of ANYONE who had those symptoms. But they’ll watch me closely. And if I have symptoms at home, to call my doctor for help. Ok…

She tells me they push the IV contrast in a CTA MUCH faster than the CT scan, so there’s a possibility it may make me sicker than the last test. Oh dear god. My head is not in the right place for this kind of torture today. I’m panicking. There’s nowhere to vomit in the machine, except all over yourself and the machine. And that machine is not cheap to replace.

I’m having a panic attack,

I don’t want to do this anymore.

I so TIRED of doing this.

And for what?

I don’t WANT to be sick anymore.

I didn’t choose this, this is not what I wanted for my life.

I want to stop spending all of my days in doctor’s office and hospitals.

I don’t want to keep testing, for no answers.

I’m losing my sanity.

I’m losing my faith.

I’m losing my life.

The  technician hands me gauze doused with rubbing alcohol. Tells me to put it under my nose, it helps with the nausea. Surprisingly, it worked. I held as still as I could, despite trembling so hard that I could feel my bones vibrating. Five minutes later, it was over. I’m jumping off the table before she can even take out my catheter. I feel like a giant baby. I feel weak and pathetic for being so anxious about a silly test. Probably test # 100 in the last couple years. (well maybe not THAT many…) I try to act fearless and strong, but I was a coward that day. 

I stumble out of the hospital, feeling faint and having to hold on to my husband to not pass out in the middle of the parking lot. We drive the hour it takes to get home. I get coffee for the drive, but I fall asleep while drinking it. When we arrive home, I climb into bed. I’ve had enough for the day. By the time I wake up, six hours later, my face is  burned red and my lymph nodes are swollen. All the doctor’s offices are closed, so there’s no one to call for assistance. I give up. This is the new normal for me, or so it seems.

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I followed-up with my primary care doctor the next day, the one I had all the issues with months back. I almost didn’t go but knew I had to get paperwork done and had to decide if I should continue treatment or not, as well as see what she recommended as far as work. I tell her about the issues with rheumatology/immunology and how I have no idea if I have lupus. Perhaps I had jumped the gun by announcing it. I guess I was just excited. She, of all people, says she believes my symptoms meet the criteria, even if the bloodwork doesn’t show it. She recommends staying on the medications and says she is keeping it as my diagnosis, at least for now. She says there’s no doubt it’s autoimmune, whether Lupus or not. 

However, she still believes that I have a disease that only I have, that I’m rare in my illness, and I need to be seen by the MAYO or the NIH clinic. (which I’m still not sure is true, but as more tests come back normal, I’m starting to think she may be right.) But at least she still believes me. Talk about finding inspiration from an unlikely source again. It was like when she first became my doctor, always taking me seriously and listening to my theories on my health, which is why I really liked her.

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Maybe I’ll stop searching for a new PCP for now. I have enough on my plate anyway.


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I did  finally have one day of relief this week, with only minor symptoms.

Every other day has been excruciating. 

I’m almost too tired to function.

Definitely can’t be too far from a bathroom, either.

And because my body hates me,

the flood gates decided to open up once again.

My endometrial ablation failed.

Now I’m clotting blood just like I was before having the procedure.

*Sigh* Only me.

Only me.

I’ll call the doctor tomorrow

and wait for the rest of my test results and what the rheumatologist says.

Until then, I’m stuck.

Still waiting, still searching

for any type of certainty

in anything in this life.

But mostly, in finding a diagnosis.

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Comfortably Numb

I’m not going to lie, having lived the majority of my life undiagnosed, it was a normal feeling for me. I was used to the disappointment, the disbelief, and the symptoms. But despite the symptoms getting worse every year that would go by without a diagnosis, in my mind I always knew something was wrong with me and it wasn’t in my head. It was not normal to be so sick  all the time, tired and exhausted, literally pushing yourself as hard as you can just to live what everyone else considers “normal”. 

I expected to feel different when I finally got diagnosed. I’m not sure what I expected exactly, but I know this is not what I had envisioned in my head. I guess I assumed there would be more excitement.

Positive motivation. Confidence. Acceptance. Validation. 

I don’t feel any of those things.

In fact, this is the worst I have felt in a while, both physically and emotionally.  I think the combination of medications, stress, all these appointments, more tests, more doctors, disappointment, and still having to live my life as nothing has changed, which I guess it really hasn’t, has sent me into a spiraling storm of emotions.

Instead, I'm here... 
  1. Still Sick
    • Considering nothing has really changed from last week, before I was diagnosed.
    • I still am having the same symptoms. Actually, scratch that, I’m having frequent and more severe symptoms due to the medication change.
    • One of my new medications is extremely violent on the stomach, so it must be taken with food, which is another issue on its own.
    • Plus my insomnia has become impossible to deal with. My mind CANNOT and WILL NOT stop… ever.
  2. Still Not Confident
    • Not all the tests have come back, so I still have doubts in my head. I know another test came up positive for a possible related/separate autoimmune disease, but the doctor doesn’t want to discuss it until the REST of the blood work comes back, which can take two weeks.
    • Still waiting to have my consult with vascular surgery and cardiology, plus my follow-ups from my GI, Immunology/Rheumatology, and Neurology. Also needed to schedule eye exam early to get a baseline to make sure there is no damage to my eyes from the new medication along the way. Appointment, after appointment, after appointment.
    • More tests are still to come: EEG on Wednesday, and then tests from both cardiology and vascular surgery, plus any that are follow-up orders from any of the other doctors.
    • No confirmation until all tests are complete on anything 100% at this point until all doctor’s are done with testing and treatment. It’s still a long journey to go.
  3. There was no positive motivation. Validation. Or acceptance.
    • I am grateful for the love and support I’ve received, both recently and throughout my journey to diagnosis, it really has helped to keep my spirits up no matter the good or the bad that I was feeling at the time. So many people have reached out, so thank you.
    • However, and I don’t want this to come across in the wrong way, but there’s no other way to say it, so I just have to throw it out there: I am surprised at how many people haven’t acknowledge that I got a diagnosis. Obviously this does not apply to everyone, but more so from the people I expected the most from. 
      • You didn’t call. Or send a text.
      • If you did, you didn’t mention it. You didn’t ask me how I am doing or how I felt about everything.
      • For some of you, there were no “I’m sorry I didn’t believe you”. Instead, it’s just ignored.
      • You were more concerned about talking about your problems, which I don’t mind – I’m happy to help- but really?
      • If you’d had asked, you’d know there are still some heavy things on the table being evaluated. I was told to start making preparations, planning for the future. But even if there wasn’t, Lupus, although not cancer, is still a very complicated diagnosis. One that will never, ever go away. One that will shorten my lifespan, especially if not managed correctly. And that’s IF it’s the only one.
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  4. Diagnosis hasn’t made anything easier, other than having a name.
    • I’m scared for my future. I barely make it through work in the last few days. I’m scared of losing my job. I’m scared of continuing to stress myself out to continue my job. To be disabled. That this will be my life forever. What do I do? No one can tell me. 
    • I’m scared that how I feel right now will never go away if I don’t adjust to the medications. And they want to add more in a few weeks. But how bad will I feel if I don’t take the medications down the line?

I just wasn’t ready for ALL these feelings, so hard and so fast. I didn’t expect to be better over night, but I expected to be doing better emotionally than I am currently. 

emotions
And I feel them all at once.

I know in time, and with more answer and certainty, things WILL be much better. Maybe I’ll be better too.

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Hello,
Is there anybody in there?
Just nod if you can hear me.
Is there anyone at home?

Come on now
I hear you’re feeling down
Well, I can ease your pain
And get you on your feet again

Relax
I’ll need some information first
Just the basic facts
Can you show me where it hurts?

There is no pain, you are receding
A distant ship smoke on the horizon
You are only coming through in waves
Your lips move but I can’t hear what you’re saying
When I was a child I had a fever
My hands felt just like two balloons
Now I’ve got that feeling once again
I can’t explain, you would not understand
This is not how I am
I have become comfortably numb

I have become comfortably numb

O.K.
Just a little pin prick
There’ll be no more aaaaaaaah!
But you may feel a little sick

Can you stand up?
I do believe it’s working, good
That’ll keep you going through the show
Come on, it’s time to go.

There is no pain you are receding
A distant ship smoke on the horizon
You are only coming through in waves
Your lips move but I can’t hear what you’re saying
When I was a child
I caught a fleeting glimpse
Out of the corner of my eye
I turned to look but it was gone
I cannot put my finger on it now
The child is grown
The dream is gone
I have become comfortably numb.

Life’s a game made for everyone…


I struggled with this post, unsure how I wanted to approach it… but really,  I’m not sure exactly what to feel myself. I’m in a whirlwind of emotions right now. And I’ve started new medications, which are wreaking havoc on my body now as well. It’s like my world has sucked me into a whirlwind and spit me right back out again. And there’s so many questions left up in the air and so many more answers I am still searching for…

But it looks like we have several possible diagnoses


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i·ro·ny1
ˈīrənē/
noun
 
  1. the expression of one’s meaning by using language that normally signifies the opposite, typically for humorous or emphatic effect.
    ““Don’t go overboard with the gratitude,” he rejoined with heavy irony”
    synonyms: sarcasm, causticity, cynicism, mockery, satire,sardonicism

    “that note of irony in her voice”
       
    • a state of affairs or an event that seems deliberately contrary to what one expects and is often amusing as a result.
      plural noun: ironies
      “the irony is that I thought he could help me”
      synonyms: paradox, incongruity,incongruousness

      “the irony of the situation”

My post from May 31  is only more proof that living life with a chronic and undiagnosed illness is both a comedy and tragedy wrapped all in to one. 

Monday, after meeting with my immunologist/rheumatologist, I finally received a partial diagnosis and started on a new treatment plan. Sure enough, they say it’s Lupus, despite what previous blood tests have shown. Not only is it ironic that this comes one day after my post about NOT having Lupus, but May was Lupus Awareness month and I got my diagnosis on June 1. I dunno if it’s coincidence but life is really funny, I tell ya.

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They’ve run some more tests they sent out to a special lab that we are also waiting for further confirmations about the extent of autoimmunity I have. So far, based on general blood tests, the lupus does not seem to be affecting the majority of my organs, which is good news and gives me a lot more options as far as treatment goes. They honestly believe it’s a secondary condition that came out with all the crazy symptoms lately from all the stress on my body for being so sick for so long. We unfortunately have no answers as to what caused the anaphylaxis reactions at this point, but because I had three in a week, she’s put me on an aggressive treatment plan for my allergies to stop it before it gets any worse. Ultimately, without me ever mentioning my own personal thoughts, she drew the conclusion to dysautonomia being the primary source of my illness (which I have said behind closed doors for a long time now). She did get me a referral to neurology for the cognitive effects, which may or may not be Lupus related.

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Luckily, I was able to get in quickly with the neurologist and saw him on Wednesday. Again, of his own conclusions after working at the Cleveland Clinic prior, he says it sounds like P.O.T.S. as primary. He wants me to start Beta Blockers once the Lupus drugs and allergy meds have been adjusted, which makes sense because he wants to know what side-effects I am getting from the anti-malaria drugs before starting anything new. Plus I have already scheduled with the cardiologist, so he’d like to see what a tilt-table test will show before doing any radiology. However, none of the potential diagnoses explains the olfactory hallucinations, so he did order an EEG just to rule out possible seizures. I also have my first appointment with the vascular surgeon next week to discuss what the extent of the Nutcracker Syndrome is playing into all of this. 

Between the side-effects from the 12 medications I am taking daily now and all the stress of continued appointments, work, life…. I dunno how I am supposed to feel. Part of me is happy to FINALLY have progress and a name and something I can tell people… that they have probably heard of. I got my validation.  But then I feel silly and stupid for being happy of having an incurable disease.  Then the other part of me is sad because there isn’t a cure. But it is MANAGEABLE. But then I have so many questions still, and so many things are left up in the air. I feel SO CLOSE, yet SO FAR.  See my dilemma? I guess I need to be a patient-patient, but it’s hard. There’s been so many changes this week with work, school, and doctors that I need to update, but I spent about 6 hours in the bathroom today with side-effects and eventually had to go back to bed. I’m tired and worn, but I have hope.

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 I have so much to say, but no way to say it.  I’m almost numb at this point because it doesn’t seem real. And maybe it’s nothing that they say. Maybe it’s something completely different after the next round of testing comes through. But for now, it has a name.

Lupus.

Autoimmune.

Possible P.O.T.S.

Nutcracker Syndrome

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Feeling my way through the darkness
Guided by a beating heart
I can’t tell where the journey will end
But I know where to start

They tell me I’m too young to understand
They say I’m caught up in a dream
Well life will pass me by if I don’t open up my eyes
Well that’s fine by me

[2x]
So wake me up when it’s all over
When I’m wiser and I’m older
All this time I was finding myself
And I didn’t know I was lost

I tried carrying the weight of the world
But I only have two hands
Hope I get the chance to travel the world
But I don’t have any plans

Wish that I could stay forever this young
Not afraid to close my eyes
Life’s a game made for everyone
And love is the prize

[2x]
So wake me up when it’s all over
When I’m wiser and I’m older
All this time I was finding myself
And I didn’t know I was lost

Didn’t know I was lost
I didn’t know I was lost
I didn’t know I was lost
I didn’t know (didn’t know, didn’t know)