Letting Myself Have Lupus.

“For after all, the best thing one can do when it is raining is let it rain.”
Henry Wadsworth Longfellow

Acceptance is a funny thing, especially when you are dealt a card in life that you can’t give back. Oh I’ve tried many times to give this back to the doctors. It’s a running joke I make to my PCP on a regular basis. He may not find it as amusing as I do but, it does entertain me from time to time to offer to give back my illness, it would make things simpler if that’s how it works. I’ve asked many times where the return box is because this isn’t working out so well for me.

I simply do not know how to be the sick person they tell me this requires me to be. My therapist says, that  in part is my fighting acceptance. I argue that I take my medications daily, I don’t revolt against the doctors. I have even stopped arguing so much when it comes to doing rounds of prednisone. What else is there to accept?

It still feels weird to say that I have a lifelong illness that affects damn near everything I do, want to do, or could possibly plan to do. It still frustrates me to have to change plans at the last-minute, is that where the final stage of acceptance would benefit me? Would it frustrate me less if I just gave in completely and let this horrible disease call the shots.

You see…I’m a bit of a control freak. I know shocker right? This really showed when everything in my life spiraled out of control and I starting obsessing over the tiniest little details I could control. It still is something I have to keep in check or it gets nerve-wracking. I have some tendencies that could be considered OCD. It is something I monitor and so far they haven’t gotten out of hand or disrupted my life too bad. I am a bit of a germaphobe thanks to this.

I’d like to take a moment and discuss what acceptance of an illness might look like on a ‘normal’ person level. You start feeling run down, you argue that it is just lack of sleep. Your throat starts hurting and your nose starts getting stuffy, man it must be allergies, because you don’t have time to be sick. Then everything starts tasting weird and the panic sets in, you realize that your friend or coworker was sick just the other day, and this is starting to look all too familiar. You fight it for a few more hours at work, and then all of a sudden you can’t go any longer and you go home early. You a few days into your illness by this point, before you have accepted your fate. You still go through feeling frustrated because it disrupts your schedule.

Why would it be different for a Chronic Illness? I would suspect scale wise I’m still right on track. (There isn’t a track)

Now imagine feeling like you are constantly fighting off the flu (accept it). You deal with constant pain in your joints, routine fevers, rashes, nausea (accept it). Doctors appointments so routine they know you on sight, who you are there to see, and can tell if you are there for a routine test or visit, or if its one of your flare visit, simply by the sound of your voice and appearance (accept it?). This is your normal. This is your life. This is what they tell you to expect for the foreseeable future, and unless they find a cure, forever, for life until you die. You will always be sick on some level.(Have you accepted it yet?) Then when you finally figure out how to manage your daily symptoms, and move forward with life, and find your footing, you encounter flares, you know those pesky things where you’re manageable symptoms all spike to off the charts levels and leave you barely able to hold it together long enough to think through what the next step needs to be.(Why haven’t you accepted it yet?) This is going to happen over and over. The hope is to find a treatment plan to minimize the impact, but the experts will tell you that sometimes flares just aren’t avoidable. That it is just something you have to learn to live with. (Wait you are overwhelmed with just the thought of this?)

Letting go of the healthy me, that woman who had a bright and shiny future ahead of me, and altering my plan for the future to allow for this new version of me to exist hasn’t been easy. It has been a lot to take in, a lot to mull over and consider. I’m an over thinker by nature and it usually gets the best of me I know, but I also know I’m usually ahead of the game when it comes to planning and having a backup plan in life.

Who knows when I’ll fully accept that I have Lupus and APS, there is not a time line on this type of things. Over the next little while, I’m going to figure out a new approach to self-care, a flare protocol, what this all really means for me. I’m truly going to work on acceptance. I’m going to work on figuring out what it means to let myself have Lupus.

(Image Credit: http://a1.files.biography.com/image/upload/c_fit,cs_srgb,dpr_1.0,q_80,w_620/MTI5MTU3ODY5NzA5ODU5Mjk0.jpg)

Over the last two years in facing my illness I have faced many challenging moments. The struggles with the daily symptoms alone have been enough to make me want to give up at moments. The side effects to my meds are debilitating from time to times. Then you throw in a flare every few weeks or months and its down right overwhelming.

Yesterday as we were leaving my doctor’s office my best friend asked me a difficult question on our way back to the office “When do you know to take a day off because of this stuff?”. I sat for a few and then eventually was able to breathe long enough to tell him that I hadn’t figured that part out yet. I don’t know when to stop. I don’t know when I’ll be okay with my life pausing long enough to take a day or so off for a flare. My schedule right now is set up that on days I don’t have clients I mainly help out around the office and am here in case we get walk ins. It is a great set up. After my shots, I didn’t see any reason to go home and feel horrible for breaking my word about being there instead of at work. I already felt bad enough about needing to leave for the hour it took for us to run to my appt. Commitments and promises keep me moving forward. Giving someone my word, gives me a reason not to give up. It allows me to know that even when things suck really bad because of Lupus, I can still be a dependable person. It may not always be on my terms because my body gets hijacked from time to time, but I will always follow through with what I have committed to.

During flares it is almost like I go through this emotional drive to prove to myself and those around me that I’m okay, even when I’m not. There is a whole lot of frustration with the extra meds, I loathe being on prednisone, I feel yucky because of the flare, the extra pain distracts me, and the nausea is often enough to where it impacts my ability to eat. I approach each flare with the goal of doing what I feel is best for me. I’m learning quickly that no matter what you decide to do, or when you decide to do it though, there will always be criticism. Sometimes it is meant well. Sometimes it is simply because you didn’t do what the person you thought you should do. Those moments can make me feel like I have had the wind knocked out of me, and it is another instance where I consider giving up in this journey.

Continuing to fight, continuing to slowly put one foot in front of the other, and to deal with the symptoms as they come, and hope each day is better for the other is how I make it to the next morning a lot of the times. Hope gets me through the other times. When I’m all out the other two options, I fully admit I get through those moments I have to find one of my stronger support system members and let them help me. It hasn’t been an easy journey, there have been a lot of bumps and wrong turns along the way….and I have miles to go before I sleep.

In response to The Daily Post’s writing prompt: “Forward Drive.”

6th Floor Office Appointment Notes.

Into the parking garage to park. Down one elevator, up the next. The familiar pattern leads us to my Rheumatologists one office and to the doctor that I have slowly realized everyone else defers decisions to and is more concerned with. The weirdest adjustment I’m dealing with right now is that since getting a Rheumatologist, everyone wants to know what he is saying, what his decisions on everything is.They are much more concerned with who my Rheumatologist is. It seems like an overwhelming amount of power of my care lies with this individual. This in turn is requiring me to learn to put a great deal of trust into him. Slowly I’m getting there. After being “burned” by a few doctors in the beginning of getting sick,  I find it harder to blindly trust doctors these days so it takes me a while. Each appointment though I get closer to being comfortable with the amount of trust I must have in Dr. L.

Last week I had my 1st Rheumatology Appointment of 2015. Overall it was a positive appointment, Dr. L was in a great mood and we covered a lot of the concerns I had with my conditions and medications. My Rheumatology appointments tend to cause me more than the other doctor appointments but this one went smoothly and other than the fact that I am still waiting on pending lab results, which has me scratching my head a little bit as they are marked as received. Hopefully soon I will be able to see the results as well.

I went over notes from my last flare with him that happened back in Nov. and how Dr. C and I handled it, he was okay with how things played out. If I should experience another once before my appointment in May I am to try get into see him. If not I’m to document it with pictures and such as best I can. I told him about the rib pain I experience during flares and he made sure it wasn’t my liver or gallbladder (I tried to tell him I was sure it wasn’t). He wanted to be sure. I also experience a cyclic flare in my joint pain that coincides with my menstrual cycle so he wants me to try taking Naproxen beginning mid cycle (or thereabouts) to stay in front of the pain to see if that helps prevent it from getting too bad. We went through our usual sequence of the joint squishing and I was happy to be able to tell him I was in less pain than previous appointments.

I talked to him about my desires to walk in the Lupus Walk in May and he told me that would be great, as long as I remembered to wear my sunscreen. Which made me realize why they hold the event in the evenings… D’oh!!! Sometimes my brain takes a little time to process. haha!

I’m pretty sure he was on a mission to see how many times he could say Lupus during my appointment. He issued a reminder that my INR was better off being kept 3-4 and that he would send a note to Dr. C stating his thoughts and notes from this appointment. Fair enough. Hopefully those notes will reach Dr. C before my Follow up with him next week. That would be helpful.

We discussed the fact that azathioprine was a little difficult to refill last month and that the pharmacist said I may have to switch medications due to the shortage. He didn’t seem a fan of that thought process, and neither did I. So he called me in more refills of it and the plan for now is to continue on that path unless we heed to go another direction. The medication is working well and I am for the most part stable. That is something to be happy about.

My next appointment is an 8am appointment in early May. Hopefully he will be in a good mood then as well! He is rather hilarious when he is in a good mood!

Flu 101: Vital Qs & As about the Flu

I did not write the following Article, I found it via the LFA Blog. Just sharing useful information. Author is mentioned below.

Flu 101: Vital Qs & As about the Flu

By Sarah Stothers, RN, BS, Lupus Foundation of America Health Educator

As summer draws to a close and the cooler months creep in, flu season is right around the corner.  It is important to take preventative measures to protect yourself against the flu. Those with lupus are at increased risk for infections (including the flu); so, for most people, getting a flu shot should be a top priority.

What is the flu vaccine?

The flu vaccine is made to protect individuals against the most common influenza viruses that are predicted for that particular season. The vaccine usually protects individuals against the top three or four influenza viruses that experts predict will be the most common for the upcoming year. Scientists then use one or two of the influenza viruses of each kind to develop that season’s vaccine. It takes about two weeks after vaccination for the antibodies to develop in your body to provide protection.

When is the typical flu season and when should I receive the shot?

The typical flu season can start as early as October and can last as late as May. Usually peak activity in the United States is in January or February. Individuals should receive the flu vaccine as soon as it becomes available, ideally by October (you can speak with your physician or pharmacist to determine when the vaccine is available).

Who should get the flu shot?

Generally, the flu vaccine is recommended for all persons aged 6 months and older.

Why is it important for those with lupus to get the flu shot?

Those with lupus are at increased risk for developing infections for these reasons:

  • The way that lupus affects the immune system can negatively impact the way your body fights off foreign invaders, such as bacteria and viruses that can make you sick.
  • Many people with lupus take certain medications that can lower the body’s ability to fight off foreign invaders. These medications, known as immunosuppressive medicines, help control the overactive immune system in lupus. However, in doing so, they limit the body’s immune response and can leave the individual open to infectious agents, or foreign invaders. Therefore, it is important that those with lupus take all precautions to ensure that they do not get the flu.

Why do I have to get a new flu shot every year?

Flu viruses change all the time and can change from one season to the next, even within one season. In addition, studies have shown that the body’s immunity to influenza viruses declines over time due to various reasons including age and an individual’s overall general health. Thus, it is important to receive a yearly flu shot to make sure that you are always protected.

Do I have to get a shot?

The flu vaccine can be delivered in several different ways. The vaccine can be administered as a shot in the muscle or skin, or through a nasal spray. However, the live-attenuated vaccine (nasal spray) is not recommended for (immunosuppressed) individuals with a weakened immune system and thus, not recommended for patients with lupus.

The conversation about the yearly flu vaccination should start earlier rather than later. Please speak with your physician now about the availability of the yearly flu vaccine.

For more information:

http://www.flu.gov

http://www.cdc.gov/flu/protect/children.htm

 

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A note to my readers,

I encourage everyone to speak with their doctor about getting the flu shot this year.I got mine about 2 weeks ago. I was required to get it this year if I wanted to continue one of my treatments. Honestly though, I’d much rather deal with the few side effects of the flu shot and the risk of a small flare, than to risk getting the Flu and having to deal with the fallout from having to fight the virus, my bodies reaction to having the Flu, and what would most likely turn into another drawn out flare and battle to get things back on track. I’m basing this assumption on the struggles I had over the case of Bronchitis I had in August. I hope your Autumn is off to a fun and Flu-free start! Take care and stay well dear friends! 

Nicole

Spoonie Life

I am a Spoonie. Some of you are Spoonies too. Some of you are reading this and feeling a sense of togetherness and community. Though our symptoms may vary greatly and our conditions may not be the same, as Spoonies we are part of a huge support group.

For those of you not familiar with the term Spoonie let me offer you an explanation. A spoonie is a person living with one or more chronic illness that identifies with Christine Miserandino’s Spoon Theory. Spoon Theory is a dramatization/illustration of what life with a chronic condition is like using spoons. It’s worth reading through if you happen to have loved ones that live with chronic conditions such as Lupus, APS, Rheumatoid Arthritis, Asthma.

I have two conditions that make me a Spoonie. Lupus and Antiphospholipid Syndrome. They both cause their own set of problems and at times it’s really hard to tell which is the bigger pain in the rear. The scariest of the two is definitely APS. It is an autoimmune blood clotting disorder. Due to it I had a miscarriage May 2013 and then a series of TIAs over several weeks later that year. Autumn of 2013 I also suffered from a blood clot in my right eye and now have a blind spot because of it. Other complications from APS include chronic migraines, brain fog, and other neurological issues. Lupus also causes me chronic joint pain, rashes, chronic fatigue, flu-like symptoms, random fevers, and a plethora of other symptoms that have been difficult to learn to live with. Even the medications (this should read small pharmacy that I have acquired) have crazy side effects and have been an adjustment.

Life as a Spoonie means starting the day knowing I have to make decisions based on not what I need or want to get done, but more so based on these ruling forces in my life that change from day-to-day. My energy levels and physical abilities (number of Spoons) varies greatly from day-to-day. As a person that has never been one to set quietly on the sidelines, this has been a very frustrating realization and acceptance process. There are still moments on a day where I start the day with fewer spoons than I need to accomplish what I need that I get discouraged and feel hopeless. I constantly have to remind myself to take time out and reserve my  spoons. Running out of spoons puts me at risk for a full-blown flare of my conditions and then instead of having a day where I do low-key activities and take time off for myself, I may end up being down for the count for over a week.

It’s odd to view every task as something that may be the task that benches you for the rest of the day. That’s how my life is though. I know at any moment, even on days that my energy is plentiful, it could all vanish with no warning. Vanishing spoon syndrome is what I like to call it. So I try to plan my day accordingly and make sure I get the most important things done early. If I can get the important things done first each day, hopefully on the days I run out of energy before the day is complete, I can move my list of uncompleted tasks over to the next day to be completed tomorrow.

Being a spoonie has taught me the value of knowing that not everything has to be done when I think it has to be. That some things can be put off to another day. It has made me reevaluate how I do certain things and it has caused me to implement some changes in my life. I have also over the last year of being a Spoonie found ways to make the processes I deal with easier, and I’ve gotten creative with how to save spoons. That’s what you do though, you learn how to live life within the restraints your conditions place upon you while living life to the fullest. That statement seems contradictory but it’s the reality of it. It’s amazing how many contradictions being a Spoonie has brought into my life.  Here are a few of them. The amount of medicines I take just to feel somewhat close to normal, but I’ll never be healthy again. I’m on medicines that are considered High Risk and that could cause cancer. This came with a verbal warning that went something like this “This may cause Leukemia or Lymphoma but it’s our best bet at making you feel better. Plus the good news is we can cure those! We can’t cure Lupus”.  I see my doctors more than a lot of cancer patients see their doctors, I’ve actually been told this by both an Oncologist (who happens to be my Hematologist) and by a cancer patient who was recovering after a few rounds of Chemotherapy.

Most of all being a Spoonie has left me at this odd point in my life where I find it very hard to relate to a lot of people. I’m just very lucky and grateful to have a close group of loved ones that love me for who I am and that are very supportive and accepting of who I am regardless of the changes that have occurred in my life.

I’m excited to say I am taking part in the SUPER SPOONIES STORY SWAP. It’s a network of other Spoonies sharing their stories about their Chronic Illnesses and what life is like for them. I encourage you to check it out. It is a pretty cool project!

 

 

 

This time Last Year

This time last year I was in a completely different place. I had just started having the major symptoms that would later to lead to my diagnosis of Antiphospholipid Syndrome and Lupus. To say I was scared, is a vast understatement.

I can pinpoint the day that a lot of this started. You can read about it on my post The Day Life Changed. To summarize what was going on I was having severe dizzy spells, double vision spells, and had started seeing this bright zipping light dart through my vision field. Shortly after this I began having episodes of what later would be diagnosed as transient clots in my eyes. This wouldn’t be for a couple of months though when they clot in my right eye was diagnosed by Dr. B. Around this time I started having severe panic attacks and one of them landed me in the ER. I had developed Splinter Hemorrhages at this time as well, under all of my fingernails. The ER doctor that night dismissed these, and stated that I had PTSD from my miscarriage. He referred me to a PCP and sent me on my way after giving me a Hefty dose of Ativan and a prescription of Xanax.. This PCP also dismissed the splinter hemorrhages so I sought out my childhood PCP and it was he who, essentially saved my life this past year for the second time since I have known him. He took one look at them and knew we were looking at a clotting disorder. I owe Dr. D A Lifetime of Gratitude.

A lot has changed since this time last year. I returned to the care  of Dr. D’s for a few months,  now I’m no longer a patient of Dr. D’s. See he was 1.5 hours away, which was problematic due to the frequent visits, but more so my insurance that I finally got said I could no longer see him as a PCP. That is how I ended up with Dr. C as a doctor. I’m also pretty thankful for all he has done for me as well. I feel safer, more confident and he helped me build a wonderful team of specialists. That’s just the doctors. I was also diagnosed with APS and Lupus.

I feel a lot closer to my old self. The fatigue, debilitating joint pain, severe dizziness, and constant flu-like feeling I felt last Autumn-first part of Summer has started lifting. I can’t say I feel 100% but I was able to report to Dr. L at my last appointment that I think the Plaquenil and Imuran are working despite the flare I had in June. I just think we need to give Imuran a few more months to reach full impact. Life will still be full of doctor visits, medications, flares, and symptoms, but I think we are heading toward a more sense of normalcy. The simplest day-to-day tasks and being able to complete for my family, brings me so much pleasure.

I feel rather accomplished when I can look back and say, I’ve managed to cook dinner the majority of the week for my household. The small things add up to big accomplishments,  my grandpa always told me this when I was younger and it’s something I’ve always believed and carried through my adulthood.

Mentally/Emotionally, I’m in a better place. I still have panic attacks over having to return to the ER or hospital. Truth is they were not beneficial to me in the beginning. Even the night I presented with classic TIA symptoms, they sent me home with an Unspecified headache. It was later that week I was diagnosed with the Branch Retinal Vein Occlusion in my right eye and told I had permanent partial vision loss in that eye. Their fancy test had said I did not have active clots in my system. I guess it wasn’t sensitive enough to pick up microclots.I never want to go back to that hospital again.

Logically, I know should I have to go to the hospital, I have a better shot at adequate treatment now. Between my highly respected specialists, my PCP, and my medical records that are full of notes from everyone, my diagnosis, and how the hospital system that I am more likely to end up at, I know the outcome would likely be better this time around. I also know there is a plan in place should something happen. It doesn’t stop the fear, fear is an automatic response. I’m still trying to train my brain to process the fear better, to shorten the panic attacks, and to utilize CBT more effectively when they hit.

Therapy has done wonders. At my last session we talked about my fears that were based one what happened last year. We started getting to the root of them. Some of the fears are based on the unknown, and uncertainty, and a lot of that has been answered now, I remind myself of that now, and slowly I will release myself of those fears. The fear of the ERs, that will take time to work through. I think that fear deserve a post all of its own.

I feel confident that I’m headed in the right direction. I couldn’t even form words to express my fears this time last year. All I could do is cry. I really thought I was in the process of telling my loved ones goodbye, and that is a fear that will take me a long time to overcome. I’ll get there. I’ve learned a lot about myself through this process already, and I look forward to the lessons I still have to learn. I also look forward to see where I am at in this process in 6 months, and a year from now.

Doctor with the Google Glasses!

Today I had a follow-up appointment with my Rheumatologist.  Some of you may remember my  post about my appointment with  Dr. L  Return To The 6th Floor Office back in May. To summarize briefly in that appointment we talked about the frustrations of insurance companies, he asked me to see a dermatologist to have my skin biopsied to confirm my diagnosis of Lupus that way.

I did, see a Dermatologist by the way,  on Friday. It was a mostly uneventful appointment, except for the prescription of a very expensive steroid lotion I am to use the next time my rashes appear. When I say very expensive, retail value is $415, Thank goodness I have insurance that allowed me to bring it home for $5, otherwise it would have stayed at the pharmacy. I am also to Dr. W  immediately so they can get me in for biopsies. He did review the pictures I keep of my rashes and he concurred, they are lupus rashes.

Now back to today’s appointment. To say I was nervous about today’s appointment is an understatement. It started Thursday. I had received a call on Thursday from someone in his front office stating they no longer accepted my insurance and that my appointment was canceled. After a very panicked 10 minutes the same woman called back saying she had made a mistake and that she had added my appointment back to the schedule.

When we got to the office this afternoon I mentioned this to the check in lady, and she just laughed it off. I had already decided I was going to mention it to my doctor so I didn’t press the issue.

After a short wait I was called back by my doctor’s awesome nurse. Aside from the front office staff, the staff at his office is plain awesome. She checked my vitals, reviewed my meds. Then she looks at me and says “Dr. L will look a little different when he comes in today.” “Oh?” I questioned. “He will be wearing google glasses, here you can read about them while you wait for him.” she handed me a flyer excitedly and then exited the room. I handed it to Doug so he could read it while I   filled out this little form I have to fill out at each appointment about my pain level, how it has impacted me the past week, and how all parts of my illness have impacted me. Then I read it. They are implementing them to help decrease the time their doctors have to spend behind computers and to increase the time they get to spend with their patients. Basically there is a small camera and microphone in the google glasses and they transmit information to the doctor’s assistant who can then enter the information. The assistant can also feed information to the doctor during appointments that helps them to better assist the patient without the doctor having to dig through files and the computer, or having to leave the room to research. They haven’t fully integrated the system yet, but it sounds pretty snazzy.

Dr. L came in and we had our usual appointment and I told him about my sun-induced flare in June, we talked about increasing my dose of Imuran briefly but decided not to. He then did the Jointman exam, which involves him squishing my joints and then going to the diagram on the computer and marking which ones are tender and/or swollen. After that we talked about other aspects of my illnesses. He then told me what labs he was ordering for the day, just general lab work today, and that he would see me back in 3 months.

Before we parted, I told him what had happened with the phone call. As you can imagine he was not happy. He listened, said that was unacceptable, and that there was not an issue with my insurance marked in my file. He then brought in the manager of the department the issue had originated from, it was discussed, and it will be handled. The lady I spoke with today was very apologetic, She assured me that my insurance was definitely accepted at their office, and they had a great contract with them so she had no idea what they person who called me was thinking. She also said that is not how things were handled when there were insurance issues either. That if one ever arises I was always given the option to remain a self pay patient, and that I would not just be dropped as a patient as this woman had tried to do.

All in all this appointment definitely eased my mind in a lot of ways. I know I’m in good hands, and it let me know that Dr. L will stand up for me when there is an issue. There’s a lot to be said for a doctor that is willing to do this. It can be rare to find that quality these days. My next appointment is at the end of October with him. Maybe I can talk him into letting me wear the Google Glasses next time!