Endless Cycle…

Several weeks ago a couple things happened. I already mentioned I changed my anti-anxiety medication and my sleep medication. The update to this happening is that anxiety wise, for the most part I am in a much better place than I was while I was on Mirtazapine. Side benefit I have also lost 17.2 lbs since I changed to Venlafaxine and Trazodone. Granted most of the time I don’t have an appetite due Venlafaxine and the fact that I am also on Topiramate and my appetite is suppressed. This loss of 17.2 lbs has given me a total loss of my high weight at the time of getting sick back in May 0f 2013 so far to 35.2lbs. Still a ways to go before I want to check in with my doctor and get his advice on if I still need to lose a little more of if I’ve made it to where we are both happy with my weight. But at least I am finally making progress in the weight loss department. My suspicion that Mirtazapine was causing me to stall turned out to be right.

The second thing that happened shortly after the switch and the weight loss began was the pharmacy I use switched manufacturers of the Warfarin I had been getting. Apparently the old pills they were giving me were sugar pills because suddenly my INR started coming back high. My monthly INR checks were a thing of the past. I started going weekly again while we struggled to get my INR down. Finally we started making progress. Infact if you consider my weekly total dose prior to this happening was 110 mg and now my weekly dose is 92.5mg, you can see we significantly had to decrease my dose of Warfarin to get my INR to start staying in range again.

Meanwhile, I managed to develop bursitis in my shoulder, this is a story for a posting all on it’s own. I also developed a horrible tension headache/migraine which led me to getting a trigger point shot, that turned out to be way more exciting that necessary due to my body just being a barrel of laughs and having to always do something random to keep everyone on their toes (also deserving of it’s own post).

Currently I am battling a lupus flare, enduring another round of prednisone, a flare up of the trochanteric bursitis in my right hip which was doing amazingly well after my Rheumatologist did another injection at my appointment last week, until I did a silly thing. I actually thought I could get off the toilet like a normal person over the weekend after a trip to relieve myself. “No, No! We will have none of that missy!” said my hip. So I’ve been icing it, taking my meds like a good patient, and laughing at myself and the fact that I have managed to afflict myself with a toilet related injury (re-injure?) This type of stuff isn’t suppose to happen until you are much older right? Guess it’s time for safety rails, and grab bars!

Prednisone, ah yes my old friend. The magical drug that helps me get through flare symptoms, usually stops all the pain I’m having in it’s tracks and at the same time has the ability to send my emotional state of being bouncing all over the place. A few days into this taper I managed to become very upset by an email my Rheumy sent me. So I emailed him back. It was long, it included every issue I have ever had with any of our appointments, how things are being handled, and what I thought needed to be done. Once I get started I don’t usually stop when I’m in that frame of mind. After hitting send, I will say I had that instant ‘Oh crap, guess I’ll be finding a new Rheumatologist.’ Luckily we exchanged several emails, and I THINK, maybe this might have gotten us closer to being able to communicate and being on the same page. I follow up with one of their midline providers in Jan, and then see him again in March. I guess we will see between those two appointments how things go.

I get my INR checked Tuesday, and we will see see how high my inr has become during this course of Prednisone and with the extra meds I have had to take to deal with the pain.

Emotionally there is a lot on my plate, we are approaching the anniversary of my dad’s passing, holidays are generally rough all around for a variety of reasons. I’m doing a lot of thinking and processing right now. A lot of this needs dedicated posts to of their own.

Work has been great, and probably the most stress free area of my life. My client list is growing and working with my coworkers continues to be overall a positive experience that makes work enjoyable and not so much like work afterall.

So that’s what I’ve been up to since my last post. My apologies for not being around and posting like I had wanted to, but as you can see, life had some other plans for me. More posts with details soon. This time I promise.

 

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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!

Markers of Time

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According to my TimeHop app, that was my status a year ago. Pardon the few grammatical and spelling errors. October, 11, 2013. That date, I’ll never really forget it really. It’s a day I play over and over in my head frequently. It was a very stressful day. The amount of emotions that I was experiencing, I don’t think I can begin to quantitate.  That day I had started the day by calling the office that has become my office that oversees my eye care to inquire about prices. After speaking with the lady for a few minutes she informed me I was having symptoms that needed to be seen that day, and that it couldn’t wait. She was concerned I had a Detached Retina. While I knew there was something wrong with my eye, I knew that wasn’t the answer. She scheduled me a late afternoon appointment with the man I affectionately refer to as Dr. B. He is a Retinal Specialists. He is said to be one of the best in our area. Honestly, he is the man you want to see if you need a Retinal Specialist.

I remember sitting in the waiting room scared to death. I had never been to an office like this. Prior to all this craziness my vision was perfect. I never needed to get vision tests other than the ones I needed in school. I was a little overwhelmed at the whole process as they ushered me through the process. In one room, into one exam chair to do the vision acuity test, dilating drops, fill out my medical history information. Then back to the waiting room. It was the end of the day almost so there weren’t that many people left. Then in to the room with the retina scanner. After I had fully dilated I was escorted to another room with an exam chair. An older,  tall and lanky doctor strolled in and introduced himself after a short wait. He took a quick look into my eyes, and then informed me that I had a clot in my right eye. Essentially I had a stroke in my right eye, you can read more about this appointment in the post called : It’s like a Stroke In Your Eye and It’s like a Stroke In Your Eye Pt. 2

I remember the crazy emotions that coursed through me as I listened to him talk. Honestly, one of the strongest emotions I felt that day was relief. This was the first answer I had to what was going on with all the bizarre symptoms I had started experiencing after my miscarriage. Because of this appointment with Dr. B, I was able to convince my PCP at the time to start me on Warfarin. Later on due to Dr. B being my doctor I was starting on Plaquenil at his insistence prior to being diagnosed with Lupus. I also contribute finding my Hematologist to him and one of his colleagues. My Hematologist handed me off to my Rheumatologist. My amazing healthcare team is, what is, largely because of Dr. B.  I had no idea how things were going to transpire a year ago. All I knew was this doctor was able to tell me what was wrong, and gave the most likely reason to why it had happened.

At the age of 29, you don’t expect to hear you have a blood clot lodged somewhere. Especially not in your eye, that’s something that is seen much more commonly in older patients. In someone my age, it was more likely to be seen in patients with Lupus and Antiphospholipid Syndrome. Looking back, I’ve come along ways since that post. I’m no longer pleading with people to listen to me and to take me seriously when I tell them something is wrong with me. The people who matter, listen and take me seriously.

At the age of 30, I’m still learning a lot about my conditions, the medications I’m on. My anxiety level is a lot less than it was a year ago. I know part of that is because I have taken the time to educate myself. I have made connections through support groups with others that are going through similar things.

Last year I couldn’t think ahead more than a few days without getting overwhelmed at the thought and crying. Now I’m excited to see where my frame of mind is this time next year, when that status rolls around on the 2-years ago list.

Oh and incase anyone is curious, even with the damned blind-spot in my right eye (that looks sort of like a shark shaped blob when I close my left eye)….my vision is still 20/20 in both eyes!

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!