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!

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Time Changes Prespective

It’s amazing how much time can change things. The leaves on the trees are dark green again. A few of them are starting to turn brown at the edges. The grass is darker green this time of year. The birds are busily gathering seeds and eating out of the feeders I have out for them. It’s hot, the kind of heat that makes you sweat just sitting still. It’s August, in North Carolina. This is our hottest part of our summers August and September. A few more weeks and Autumn will be here.

It’s a time of reflection for me, I’m noticing things this time of the year, that I simply didn’t have the mental capacity to do so last year. It’s nice, but at the same time it makes me sad that I missed out on it last go round. It’s not something I’m going to dwell on, but it is part of the grieving process. I’ve been down this last week. Mainly because I’m teetering on yet another flare, and it couldn’t come at a worse time, well I’m sure it could, but seriously the timing for this one is bad. Saturday is our wedding anniversary. We have plans and I don’t want to be the reason they are put off, or that we have to change them. My INR has been low for two readings in a row and I’m due back Friday for another check. So as I sit here and watch the little grey Titmouse ferry seeds from the feeder to a tree branch nearby to eat later, I’m taken back to last year.

It’s hard not to think back to the earlier days of my illness. It’s hard not to get lost in the fear, the unknown, and before I know it, I’m crying again. Before I know it, I’m a raw ball of emotions. That’s one of the things I find a lot of people do not talk about when it comes to Chronic Illnesses, the emotional toll it takes.

I learned a lot this past year. I learned a lot about the health care system, insurance companies, and pharmaceutical companies. Most of all, I learned a lot about myself and my emotions. In the earlier days, it was pure fear. Now I deal with a lot of anxiety and depression that is left over from the initial fears.

I do not deal well with the unknown. Put me in completely uncharted waters, and I freak out pretty bad. If this makes me a bit of a control freak, so be it. I like to have a little control in my life. This whole being diagnosed with two chronic illnesses thing, has left me feeling powerless, helpless, and at times out of control of my own being.

I did not become an adult that knows how to ask for emotional support. So if I call you and just break down crying, or I start blubbering, or talking really fast, that is my attempt at saying, Please I need you right now. Or if you look over, and I’m just crying silently in the car, it’s because I feel safe being with you. I’m much better at being there for people, than being the person that needs someone. This even affects my relationship with my healthcare providers. I often catch myself feeling guilty over needing to see them so often, or having to call them to ask them questions. Or heaven forbid they need to step in for an impromptu appointment, or call one of my other doctors for a consult, my guilt factor goes through the roof then. I’m constantly having to remind myself that it’s their job, and that I need to let them, do their job. I really suck at being this ‘sick’ person.

I never realized it was possible to grieve for yourself, until I started the process of well self-grieving. It’s not like grieving a person that has passed away. It comes and goes. It hits at the most random moments, and sometimes it’s more paralyzing than anything I’ve ever experienced. Some days I’m okay with this new life I have no choice but to live. Other days, like this past week when I’m having the extra doctor appointments due to my INR being too low and being on flare alert, I’m reminded that my life is never going to be normal again. It’s almost like leading two lives at times. There’s still enough of the old me left that at times things are still the same. Then there are weeks like these where I can’t help but face the music. There’s no timeline on how long a person grieves themselves when they become ill. There’s no one telling me how long it will take before the heartbreak of these weeks to wear off. I just have to keep moving through them. So that’s what I do. Because I know now, that these weeks do end. The good weeks do come. Yes, unfortunately there are more bad weeks ahead, but I can’t focus on those. It is my choice what to do with my energy and I choose to focus on the good weeks.

So While I’m sitting, taking a moment to watch the birds busily go about their day around me and remembering, I’m also reminding myself to look forward. Always find a way to look forward.

 

 

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.

Return To The 6th Floor Office

This Morning I had my 3rd appointment at my Rheumatologist’s office. Dr. L is the newest member of my healthcare team and I was sent to him by my Hematologist, Dr. M and my PCP, Dr C.  He dropped a little bit of a bomb on me this morning by saying we couldn’t officially call it Lupus on paper because of how my lab work is presenting. We know it is Lupus, all of my doctors know it is, but on paper for now it is coded as 710.9- Undifferentiated (or Unspecified)  Diffuse Connective Tissue Disease. He went on to say my symptoms and signs are highly suggestive of Systemic Lupus and suggested I bring on a Dermatologist to get my butterfly rash and other rashes biopsied if we want a conclusive diagnosis of SLE. For now though we are calling it Lupus in appointments and we know it’s Lupus, but to my insurance company because they like to have things backed up by positive lab work I have UCTD. This doesn’t change much. He will still see me regularly, I’m still being treated for Lupus, I’m still on Imuran and he took over my  Plaquenil prescription from Dr. C.

He did go over some of my labs with me and what I learned was my ssDNA IgG Antibody was moderately high, but not high enough to declare it high enough for a positive SLE diagnosis.  My IgA immunoglobulins are very high, and one of the things that typically makes this high is Lupus and other autoimmune responses. Normal range for IgA is 69-380 set by the lab that ran these tests, My count came back at 522. There are a few other things that can cause this value to be high such as such as cancer or cirrhosis of the liver or long-term hepatitis, but we are pretty sure none of those apply. Why can’t that value be used to support my diagnosis of Lupus from an immunological stand point to the insurance company? This is so frustrating!!!!

Dr. L wants me to see a Dermatologist. He said if we want a conclusive diagnosis of SLE one way to locate the antibodies may be through a skin biopsy. I’m not sure how I feel about having a chunk of my skin removed in pursuit of the elusive antibodies. The rashes I experience are on my face and arms. What if we don’t find the antibodies on the first try? How many times do we biopsy before we give up and just wait until they accumulate enough in my blood stream to count as positive enough?

How long before I’m sick enough to make my insurance company happy? That is what this boils down to. I’m just starting to get Lupus is how it appears to me. I’m early in the process and not sick enough to really count as far as insurance companies are concerned. Why can’t the diagnosis of Lupus by not one of my doctors but 3 of them and the agreement of a 4th be good enough to make the insurance company happy? Nothing has actually happened on this front, Dr. L is just being an amazing doctor and trying to stay in front of any issues that may occur with them. I know this. It still frustrates the hell out of me.

I spent several hours after the appointment being various levels of upset and angry. I have cried, yelled, cried some more and went through moments of wanting to move my appointment with Dr. C from Friday to earlier in the week. That won’t really accomplish anything other than he’s a comfortable person to talk to, would get my referral to the Dermatologist in place a few days earlier, and would get my INR check out of the way for the week. There’s no real reason for me to move it, but the desire to do so is there. I won’t do it, all of this can wait until Friday and hopefully I will be calmer before then. Today’s appointment left me feeling powerless again. Even after I realized I didn’t have to get the skin biopsies unless I chose to, part of this whole process makes me feel like I’m not in the driver’s seat anymore. In 6 short weeks Dr. L went from yes this is Lupus to we know it’s Lupus but we have to put something different on paper. Briefly it felt like he was giving up on me. He wasn’t otherwise he wouldn’t have continued my Imuran nor took over my Plaquenil prescription but the emotion was still there.

After I got home I logged on and checked what had been added to my file from the appointment, One of the notes that got added to my file from the appointment was Dermatitis from drugs and medicines taken internally. What the hell? First of all. NO. These rashes and skin irritations predate all the medications that I am on. They have been diagnosed as typical rashes caused by Lupus, by none other than Dr. L himself in the past AND his PA… Not to mention Dr. C and Dr. M. So no… No they are not Dermatitis caused by my medications. I’m assuming drugs is being used to categorize OTC medications? I am not a druggie. I have given him no reason to think I am a druggie and he has given me no indication that he thinks I am an addict. I am, however, the child of an addict and wordings of things like this do trigger negative responses from me. I had almost made it back to a happy spot in my day but this leveled me. The tears came back, my stomach flipped and I am pretty much done for the day. I’m going to show this to Dr. C on Friday.  This my friends is part of the reason I don’t like seeing multiple doctors. I’ve already had this talk with Dr. C. Now I’m going to have it with Dr. L. I  have an issue letting people in. This is part of the reason why I haven’t brought this subject up to him and now it seems maybe I should have. I know I mentioned my dad was an alcoholic and an addict but I don’t think I went into the emotional turmoil that it causes me. So I’ll talk to him about it when I return to the 6th floor office in July.

I had high hopes that today was going to be a great appointment. That today was going to be another step in the forward direction and that it was going to be another step to building trust and a lasting relationship with my doctor. Some of that happened. He did prove to me he’s not just hanging me out to dry. He proved to me that he’s willing to do what it takes to get me to prove the diagnosis we know is there. It’s just a frustrating process. Leave it to my body to do things backwards. I should have known this would be the case. Over the years I have had some odd ball medical issues. Of course… Of course it’s going about Lupus backwards as well.

Lupus can be an expensive disease to treat. Average annual direct medical costs exceeds $20,000, with the average increasing to $63,000 if the kidneys are involved.

A few Quick Facts:

  • Lupus is an autoimmune disease.
  • Lupus can damage any organ in the body.
  • Lupus can cause life-threatening consequences.
  • Ninety percent of the people who devPostselop lupus are females.
  • It can take several years to get properly diagnosed
  • There are 11 diagnostic criteria for Systemic Lupus
  • Not all people with Lupus have the Butterfly Rash but it is fairly common in Lupus patients
  • Positive Lab Results are not required for a diagnosis of Lupus (I did not have positive SLE antibodies at the time of my diagnosis but I have Lupus)
  • Lupus is not contagious

 

How can you help?

Visit Lupus Foundation of America for a few ideas on how you can help raise awareness, volunteer, find clinical trials and other ideas to help those suffering from Lupus.

 

 

Don’t forget Put on Purple Day  is coming up on May 16th! Wear Purple to show raise awareness and support for those affected by Lupus! If you decide to participate  I would love to see pictures of everyone participating! On the 16th I will post a picture of myself in my Purple Shirt, If you would like please comment on that post with links to your pictures.