And We Are In Range Again!

This weekend, I avoided going out in the sun, took my meds, took it easy, at least somewhat, I’m never good at the taking it easy part. I took 30 mg of Prednisone From Friday until today. I started feeling a little better yesterday, and somewhat better today. I decided to take my 30 mg dose this morning, then I went and checked in with Dr. C. Thankfully this appointment showed improvements. My INR is back in range, it’s 3.5. That means I can resume my normal dosing schedule of Warfarin for the rest of this week, unless I start getting ‘the bad’ headaches. Some warning signs of low INR for me is really bad headaches, silent migraines, and splinter hemorrhages under my fingernails. Those things all show me I need to go to the doctor and get my INR checked, even if I’m not due for a check.

I was so happy to see 3.5 on the INR test machine this morning. I’m pretty sure I would have cried if it had still been low. Cindy wrote down my INR, made notes in my chart on the computer as we chatted and then she left the room. Dr. C came in a little while later and was happy to see my INR had returned to range. We discussed if I was comfortable returning to my regular dosing schedule and I said I was. He then asked if I was feeling better, and I told him a good bit but still not completely. He said he wanted me to stay on Prednisone a couple of days longer so-called me in another prescription for them. He said it would hopefully knock this flare the rest of the way out. He asked when I wanted to come back and get my INR checked and I said in a week since I was on Prednisone, and that med is known to cause spikes in INRs. He the told me that either Friday or Monday would be okay and that Cindy would come back and schedule that appointment with me since the majority of my INR checks will be through her with him calling me later in the day, unless there’s a drastic out of range reading like we were getting last week. I told him how much I appreciated him stepping in Friday when the reading came back so low, and he said not a problem and that the appointment went exactly how he was hoping the set up would work. He’s hoping if the majority of my INR readings are with his nurse we can keep my insurance company from getting fussy later on down the line. He will still want to see me once a month to check in. He then explained that if I ever need to talk to him or if anything happens like it did on Friday then Cindy will come get him and He will either step in at that time or I can wait in the waiting room until he can see me. At least there is a concrete plan of action. That makes me feel more at ease.

Now let’s hoping a day or two longer and I can be done with Prednisone. It causes my usually stable with treatment BP to shoot up. This morning it was something like 144/92 and my pulse was 111. That’s with taking my daily dose of Lisinopril. So needless to say I can only do short treatments with Prednisone. Besides, it causes too many other issues if you stay on it long-term. Wonder drug that it is, it still does some pretty nasty things to a person’s body over time.

When Cindy came back to schedule we decided to do my next check on Friday because she is off next week and I would prefer to deal with her since she is most familiar with me and my issues. It gets old having to explain everything to new nurses, and doctors. So if I can continue dealing with primarily her and Dr. C this will cut down on my stress level as well. So I’ll head back to see her at 9am Friday to see if my INR is still behaving.

Coming up this week in the list of appointments:

• Tomorrow: Therapy….It’s going to be an interesting appointment. This is the first session I’ve had with her during a flare. Will be interesting to see how discussions go when we have an actual flare to discuss instead of the anticipation of one, or the aftereffects of one to discuss.
• Thursday: Ophthalmology appointment. Dr. B 6 month Follow up, plus a check to make sure Plaquenil isn’t building up in my Retinas.
• Friday: INR Check with Cindy.

Full week ahead still plus….all of the other life stuff that I need to accomplish. Yep folks, it’s going to be another busy one!

Dear Lupus Flare

Dear Lupus Flare,

Hi there. It appears we are getting to know each other real well this week. I get it, trust me, I got the memo, YOU are not a fan of the sun, or stress, or maybe even the chickpea salad that I made over the weekend  that was oh so tasty. Please stop. You put me on notice. I’ve listened, I’ve lessened my time outside, I’ve even seen my doctor 3 times this week because of you.

I wish you or someone could explain to me why you are messing with my INR so bad. It had been so stable for almost 2 whole months. What gives? This past week you caused me to have THREE INR tests, at THREE different appointments on THREE different days. Monday was low enough, 2.4 isn’t cool man! Tuesday showed hope of rebounding when I was back at the office. That’s the day we figured out we were dealing with you. Dr. C gave me the option of starting Prednisone at that point or riding you out and letting you pass on your own.  I didn’t take into account that not all flares show up as pain. At least we figured it out. At that appointment Dr. C said to come back Friday (Monday at the latest) to see Cindy for my INR check. I chose to keep in on Friday since my INR was low the previous day. See…. I’ve already learned I can not trust you.

My choice not to start Prednisone on Tuesday was based on the fact that my INR was 2.7 on Tuesday so I thought, ‘Meh, if the pain doesn’t get any worse, I’ll leave things be.’  That was a mistake on my part, trust me….that mistake will not be made again.

Wednesday, was crap. If I hadn’t of known better I would have sworn I was coming down with the flu. I felt like utter poop. Thanks for that. I got a lot of snuggle time in with my pets, caught up on emails, and got some quality chat time in with some friends I hadn’t talked to in a while. So by sidelining me you actually helped me slow down enough to catch up with the loves in my life. Thank you for showing me I need to slow down. Thursday came and I didn’t feel much better, less flu-like, but still ran down and crappy. I mustered up the energy to shower and prep my meds for the following week, ate meals and well that’s about it.

Friday morning arrived and we headed to see Cindy. You can imagine (no you can’t) my frustration and disappointment when I saw 2.3 on the screen as the INR machine finished processing my result. After reminding Cindy this was way too low for me, (Remember my Range is 3-3.5-4ish? Yea) She went and grabbed Dr. C. I felt horrible, I was supposed to just see her. I wasn’t on his schedule and then all of a sudden, here I was a random patient added to his probably already busy schedule. I can’t begin to express how appreciative I was that he was willing that do that. I know there are plenty of doctors that would not of. Luckily my doctor….is not like most doctors.

He came in, talked to me, decided to call and involve my Hematologist in the process, and all of a sudden two doctors were being involved in this issue. Do you understand why this frustrates me? (I know you don’t). He had called Dr. M to see if we should do a Lovenox Bridge to tide me over while my INR rebounded. Lovenox is a different anticoagulant that works on a different clotting cascade that does not react to Vitamin K and the other things that Warfarin interacts with. His thoughts were, it would be sort of like an insurance policy while I came back into range. There are several issues though. Even with insurance, its expensive, it would be 1-2 injections I’d have to give myself a day, bleeding risks are slightly higher, and I’d have to come in for at least 2 more INRs in range before I could come off of it. So in a way it was great news when Dr. M said we didn’t need to do the bridge. Apparently with my Anticardiolipin Titers as low as they were last time, I am at a lower clotting risk right now. So at least that is good news. So we decided I’m on 17.5mg until Monday and I’ll see him then to get my INR rechecked.

Oh, did I forget to mention…..the  Prednisone? Yep you are on notice Flare. Your days here are numbered.

Goodbye at the soonest and no love,

Nicole

Tilt A Whirl Kind Of Day

The answer as to why my INR was low yesterday….. the beginning of a flare. Today I was hit with spells of dizziness that landed me back at Dr. C’s office. Dizziness was one of the things on the list he told me I should return before Friday if I started experiencing. So when I started having dizzy spells this morning around 11 I called and got his last available appointment at 4.

I spent the day between the before the appointment taking it easy. Doug and I watched How To Train Your Dragon, ate lunch and assembled my Medical Bracelet that finally arrived. Stay Tuned for a separate post dedicated to it! I continued to have dizzy spells throughout the afternoon, even after eating, and making sure I had adequate fluids. We thought it might be my blood pressure dipping too low so we checked it at one point and it was 123/77.  Yesterday at my appointment it was 130/86.

Doug and I got to Dr. C’s office and went in after Mellow called as he got off work. I signed in and we sat down to wait for the check in process. A little later I was called up and one of the ladies signed me in. It never fails when this lady checks me in she argues with me over if I have a copay at their office or not. Even though she can clearly see on their copy of my card I have no copay for my PCP. The convo this afternoon went like this

Receptionist: “Do you have a copay today?”

Me: “No.”

Receptionist: “Are you sure?”

Me: “Lady I’m here at least every other week, I’m pretty sure I know what my copays are.”

Receptionist: “Are you here for a physical?”

Me: “No”

Receptionist: “Are you sure?”

Me: “You can see the reason for my visit on your screen.”

Receptionist: “Are you sure you don’t have a copay?”

Me: Blank stare on my face

I’m usually a lot nicer and chattier with the front desk ladies. Dizziness does not make for a friendly version of me though. The lady that usually checks me in was quietly smirking behind this lady at our exchange. At one point she mouthed, ‘I am so sorry.’ Finally she finished her line of questioning and printed off my paperwork for the nurse and let me go sit back down. Which was great, because I was starting to get really dizzy standing there, and I told her that a couple of times. It would not have been good if I had of fallen out in the floor.

A different nurse processed me for this appointment, a nurse I had never worked with. I’m so use to Cindy, Dr. C’s main nurse that it always catches me off guard when a different nurse calls my name. She came to the waiting room says “Nicole” I just sat there assuming she was asking for someone else. After several seconds in a more urgent tone she goes “Nicole Davis!” Oh that’s ME! Doug and I stood up and followed her to the scales. Weight was down a lb from yesterday. Then off to the room we went. No fever, good sign. Pulse was okay, O2 was good. BP was 116/77, even lower than it was earlier in the day. I mentioned to the nurse that Dr. C probably wanted my INR checked and she said she would go ask Cindy. She left said that he was running a little behind and told me to be patient and hang tight. We are good at entertaining ourselves while waiting in the rooms at appointments so it was all good.

We were busy chatting when Doug pointed out that my butterfly rash had returned. My face had felt warm for a little while, I took a look and sure enough there it was across both cheeks and bridge of my nose. A few minutes later we heard Dr. C ask Cindy if they had gotten an INR on me, they told him no and in he came. “What happened?” ……Wait is this a repeat of yesterday? “I missed you so I came back.” I blurted out. Yea I’m an awkward individual. Then I told him about the dizziness and he pointed out the butterfly rash, asked about the level of joint pain which were hurting a good bit. Then he asked if I had increased the amount of time I was spending in the sun over the last few days, activity level, and questions about other known triggers of Lupus flares. He then said Cindy would be in to get an INR and that if it was any lower than it was yesterday we would be doing a Lovenox Bridge while we rebounded to my target range. I was so happy he brought this up because if he hadn’t, I was going to suggest it myself. He said other than that we were looking at doing another round of steroids because it was becoming evident we were dealing with another Lupus flare. Why on earth my INR drops like this when I flare, I have no idea but it’s a definite pattern that we have documented.

He went out to take care of another patient or something while Cindy came in to check my INR. To our surprise it was 2.7. It was up a whole 0.4 points from yesterday! When Dr. C got back to the room he said luckily we didn’t have to do the Lovenox bridge, but we would keep that in mind for future dips like this. He did tell me to go ahead and do the extra day of 17.5mg tonight as planned. Then I go back to my regular doses the rest of the week. It was the end of the day so he sat and talked to me a bit. He gave my medical bracelet his stamp of approval. He also is sending a referral to another Dermatologist that accepts my insurance. Apparently the one my Rheumatologist wants me to see doesn’t take my insurance, even though my insurance says he does, that makes no sense to me. The appointment at least calmed the worry that my INR had fallen even lower than it was yesterday, confirmed that I was flaring again, and allowed us to discuss a few things at a leisurely pace since I was the last patient there for the day. It’s up to me if I want to take Prednisone or if I want to ride this flare out since it’s not as severe as my last one. We will see how I feel tomorrow and I’ll make a decision about the steroids for tomorrow in the morning. They come with their own risks and issues so we try not to use them unless I absolutely need them.

He told me I could either keep my INR check on Friday, move it to monday and he’d be fine with that or I could move it to Tuesday, but he wouldn’t be all that happy with that but it was up to me. I am leaving it on Friday and we will go from there. I left out a bunch of things. I’m tired and my brain isn’t processing properly. I guess after being on a tilt a whirl all day that is to be expected.

What Happened? How Low Can We….NO.

“What Happened?”, he exclaimed as he stepped into the room. “Beats me, guess my INR got lonely.” I replied. That was the start of my appointment with Dr. C today. I had my INR check. It was the first one at the 2 week spacing. Today my INR was too low. No major changes in my diet, no changes to my medication, no real concrete explanation, just another frustratingly low reading. After almost 2 months of my INR being consistent and in the range of 3-4 it was 2.4 today. I didn’t like it, my doctor certainly didn’t like it, he kept repeating so throughout the appointment.

Some of you may be asking what an INR is. The international normalised ratio (INR) is a laboratory measurement of how long it takes blood to form a clot. It is used to determine the effects of oral anticoagulants, most often Coumadin(Warfarin) on the clotting system. It is used to determine if the dose is appropriate or if it needs to be increased or decreased. If you want to see what a Typical INR appointment sort of looks like for me Check out my post, Always At The Doctors. They are doing away with those snazzy little papers though, and transitioning to a new form. Plus Now instead of seeing the Nurse Practitioner (who no longer works there), I have been seeing Dr. C for my INR checks and the nurse oversees the test part of my visit then he comes and talks to me about the results, adjustments that need to be made and the time frame of when I need to schedule my next check. Eventually I’ll need to post new pictures of INR appointments! 🙂

I knew it was going to be low today, I woke up to a tiny little splinter hemorrhage under one of my fingernails. Even though last week my Hematologist said those aren’t of concern, I’m going back to my previous thoughts that they are a warning that my INR is low. That has been proven to me a couple of times. Low in this case is still in the I should be protected from major clots, however given the nature of Antiphospholipid Syndrome, I’m still in danger somewhat of microclots, severe headaches, dizziness, vision issues, and m/s like symptoms.

We talked about my diet over the last two weeks and the only thing that was really different is I had chickpeas. He said it is a possibility that I have an odd sensitivity to them so we will keep that in mind. He said it is possible that it might dip a little lower than what I’m at if I ate them on Saturday. He’s hesitant to bump me up more than what he did at this appointment, so he told me to take an extra dose of 17.5 mg this week. I’m taking 17.5 tonight, Tuesday (this is the extra dose), and Thursday. I’ll take 15mg on Wednesday. I go back Friday to get it rechecked, unless I start having severe headaches, dizziness, visual disturbances, etc. Then I am to call him and come in right away.

While there I showed him a rash that had appeared over the weekend and he diagnosed it as Tinea Versicolor and called in a prescription for a steroid cream. So for the next week I get to apply this cream 3x a day. He said the rash is pretty common in Lupus patients and I’ll probably see it again from time to time. Great? UGGG!

I also took the opportunity to ask a few questions that had been on my mind lately. I asked what physical activities I needed to avoid and he said it was more about weighing risk vs benefit. To make smart decisions and to keep him informed. I also asked if there were foods I should avoid since I am on an immunosuppressant. He told me no and explained that while we were suppressing my immune system we weren’t wiping it out completely. Essentially Imuran is keeping my immune system in check and making it act like a normal person’s would, instead of being in overdrive like mine is since I have the autoimmune issues I do have. He said if I wanted to though I could take Vitamin C. He then added to be really careful with Multivitamins because they have Vitamin K. Vitamin K will make my anticoagulant less effective.

So here we are, another dip on the INR rollercoaster, just when it looked like we had leveled out. My thoughts are it’s either the chickpeas, stress, hormones, or an impending Lupus flare. My husband inquired if it could be the fact that I have spent extra time in the sun this past week. Who knows really. All I know is I hope it is back up on Friday. We shall see.

Until Next Year

I met him in January. He stood a towering 6 foot something and had a commanding presence as he entered the small room I sat in. I was a ball of nerves when we first met. He is an older gentleman with a kind face that is often framed with a pair of glasses that are ill fitted. He moves them up and down his nose as he talks and reads from a thick file he has carried into the room. His expressions were stern at first, though as time has gone by they have softened and I’ve seen a couple of smiles cross his face. He remains guarded most of the time, I’m guessing given his profession it is a learned behavior.  I’ll admit when I first met him it was at a point where I wasn’t paying close attention so some details escaped me.Things such as his thinning hair, or the fact that he always wears a white coat.

I can remember when we first met one of the first things he told me was that I had to find a way to calm down. I was still at a stage that I felt that was impossible. That I thought it would never happen.  I’ve seen him 4 times now. Each time he would say I was doing  a little better.

Today was the most recent of our meetings. Today will be the last time this year. Today he said I looked great, the best he’s seen me since we met. He kept repeating that I looked great. That he was really happy with how well I looked. He said that he was happy with where things are, that I am in good hands and that he is pleased with how I’m being cared for. Today I saw a side of him that I had never seen of him, that let me know why he was on my team. It was almost bittersweet hearing I won’t see him until this time next year. Then again, at least that means he isn’t planning on retiring yet. Today I saw my Hematologist, Dr. M. Today he also said that my care was better off with my Rheumatologist because I have a Rheumatologic Disease with a Hematologic Manifestation.Those are  big fancy words for “Lupus with a side of blood clots”. He will mainly be in the background in case of emergencies, consults, should I need surgery and those sorts of things.

Our meeting Today was brief, packed full of information and he vetted the Dermatologist Dr. L wants me to see. He also was happy to hear I was getting a medical alert bracelet. Today before we parted, he told me he was happy to see I had calmed down from when we first met, and that he knew I was going to be okay. It was over quickly and we parted ways. I headed to the check out and scheduled my first appointment for 2015. I won’t see Dr. M until June 8, 2015, assuming nothing major happens that requires me to see him beforehand.

Follow-Up with Dr. C

Dr. C wore purple for Lupus awareness! Have I mentioned how awesome my PCP is?

 

Shirt we made Dr. C for Lupus Awareness.

It made my day today when my doctor walked in and pointed out he was wearing not one but two purple shirts for Lupus Awareness! One of them being a shirt we made for him! I wish I could have gotten a picture of him in it, but I at least have a picture of the shirt from before we gave it to him. There is a story behind it and hopefully he won’t mind me telling it on here. My friend Penny and I ran into him one day at lunch and were chatting with him when the waiter happened by and asked him what he did for a living. He replied “I’m a Family Physician at HFP”. The waiter looked at him and then asked, “Is that like a doctor?” Dr. C replied “Yes it is exactly like a doctor”. After the waiter returned inside much laughter ensued. It was rather amusing. After I told my husband the story, being the screen-printer he is, it quickly because a shirt slogan and I gave it to Dr. C at my next INR check.

Today was a follow-up appointment with him. This appointment was on the books a month ago and was supposed to be the appointment where we talked about the fact I had started Imuran and caught up on notes from my last Rheumatology appointment. Since I started Imuran ahead of schedule we didn’t have to do that part. For the most part we have already seen the impact it is going to have on my INR and warfarin dose. For me it appears very little impact is occurring. One this I did forget to mention at my appointment and I will make a note to tell Dr. C next time is that this is absolutely the max dose of Imuran I’ll be on because of how my test results came back when Dr. L tested how I metabolize Imuran. That is the one piece of information I forgot to mention today.

I did tell Dr. C that Monday’s appointment overwhelmed me, left me in tears, and that it was like a completely different doctor had walked into my appointment than the Dr. L I had met at my previous appointment. I told him about Dr. L’s sudden change of mind that we really need to track down the antibodies to prove Lupus and that it caught me off guard a good deal. I showed him the information on the Dermatologist that Dr. L wants me to see for the skin biopsies. We talked it over and he is leaving it up to me unless it comes down to Dr. L requiring me to have them done to continue treatment. I showed him the codes that were on my paperwork that I had to give to the checkout lady at Dr. L’s office and he was able to explain what the medical codes meant. I was correct that the first code meant Undifferentiated Connective Tissue Disease and the other two codes were apparently just reminder codes to my insurance company that I am on high risk medications (Imuran & Warfarin). With that being said, he did tell me that both himself, Dr. M and of course myself still all believe this is Lupus. He reminded me that Dr. L is one of the older doctors, so his Dr. M but not all of the older doctors are stuck into the older way of diagnosing Lupus. I told him that I had learned through looking at my medical records from Dr. L that my ssDNA (single strand DNA antibodies) were moderately high when his lab tested me for Lupus a few weeks ago. The problem with this antibody is that I A) didn’t test positive enough for their likings and B) it is not specific to SLE. It CAN show up with Drug induced Lupus,  Rheumatoid Arthritis and Chronic Hepatitis. Today we discussed that we are pretty sure I don’t have Hepatitis (We have had many conversations over liver issues because my aunt died from Autoimmune Hepatitis and I am terrified of liver issues now),  my Rheumatoid Factor does not support a diagnosis of RA. I am on one drug that can sometimes cause drug-induced Lupus. Here’s the thing though, at the time of the test, I had not been on it for very long, certainly not long enough to cause DI-Lupus AND all of my symptoms predate the start of Lisinopril. So we are again pretty sure this is SLE. I also have anticardiolipin antibodies, which is part of my Antiphospholipid Syndrome, the blood clotting disorder. However, this antibody is pretty common in Lupus patients that also have APS. Confused yet? Yep my medical conditions overwhelm me and cause me to research and ask lots of questions.

So where we stand today is much like I said earlier in the week, It’s still Lupus. We are treating it and hopefully things will slowly start to improve as we continue to do so. Speaking of treatments I told him I thought one of the things that upset Dr. L was that I hadn’t been taking Naproxen as he had instructed me to do between appointments. The thing is I’ve had conversations with both Dr. C and my Hematologist, Dr. M and both of them have in the past laid out the risks of taking Naproxen while on Warfarin. So I’ve erred on the side of caution and used the methods that Dr. C and I have figured out worked for me. I have a topical gel that he prescribed that does wonders when my joints start swelling and it has the benefit of being an NSAID that I can apply directly to the afflicted joint and it’s not systemic so I don’t get the interaction with Warfarin that I get when I start taking Naproxen. I also have a pain med that Dr. C prescribed and when the pain gets too bad I take it. The truth is most days I just deal with the pain because I hate taking pain meds. Even when I need them I hate taking them. I’ve spoken of my dad’s drug issues in the past, just knowing what his addictions did to him cause me to question if I should even get near pain meds. I know there is very little risk in me becoming an addict, I don’t have an addictive personality, unless you count my scarf obsession, my yarn collection, or silly things like that. Still they make me nervous so I don’t take them unless I need them. The last time Dr. C called in a prescription for Tramadol he gave me two refills, I have yet to use the first refill. I still have most of the first prescription left. Granted we ended up having to do a round of steroids in the midst of all this but even those aren’t a long-term option to fixing my pain. Luckily though Dr. C is understanding where I come from with my issues with pain meds. I explained to him the deal with Naproxen and that Dr. L wants me to start taking it at the rate of 1-2 in the mornings and 1-2 in the evenings and that he seemed upset that I hadn’t adhered to this treatment plan. I told him that Dr. L had also said that he has plenty of patients on both meds that have no problems. We both agreed that he probably does, but perhaps none of them have Dr. M telling them not to take Nsaids. I do have a follow-up with Dr. M coming up at the beginning of June so I will also talk to him about all of this then as well.

We also checked my INR at this appointment. It has been 10 days since my last INR check. We had been doing it every week but recently Dr. C said we could start spacing them every 1-2 weeks. I’m not comfortable enough yet to go the full two weeks so I’m splitting it up and going every 10 days for now. I also want to Dr. M about this before I go making too many changes to the frequency of my INR checks. I figure if I’m going to have a Hematologist I should ask him these sort of questions. Today my INR was 2.9. My goal range is 3-3.5(ish). We don’t tend to freak out if it’s a little over. We decided to leave my dose the same because I’m pretty sure the dip is due to this stress induced flare I have brought upon myself this week. Word of caution, stress is not good for folks with autoimmune conditions. It tends to cause a flare in their symptoms. For me it has caused a flare in my joint pain and fatigue and a small dip in my INR. The really cool thing about this dip in my INR, was even though it was lower than we want it to be it didn’t dip me into the range that causes me to have major issues with my APS. Until recently my INR was still in a range where if it dipped it was dipping low enough I would have transient clotting events, dizziness, migraines. This time, it was comforting to see that even with this flare the dip took me just below my target range, and that was still high in the therapeutic range which means clots are of very low risk! Next week I have therapy with AL on Tuesday, then my next INR check and the labs Dr. L is having Dr. C run for him are on 6/2, Dr. M is 6/9.

Overall it was a good appointment. He was able to reassure me and remind me that I still have some control in this insane situation. Plus he wore Purple! Yes he is that awesome! He has another patient that has Lupus and it is sweet that he is showing support for us. Not many doctors would have gone this extra step. It was a small act that says I care! That goes a long way and I hope he realizes how much that means to me.

 

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.

Lost- A sense of losing one’s self

Last week when I posted Lost, a poem I wrote, I had no idea it would quickly become my most popular post. It seemed to resonate with many of my readers. The loss of one’s self seems to be a common occurrence with the chronically ill, especially at the beginning of the diagnosis. I have received many comments, messages, and have been asked by several if they can share my poem on their own blog. I was humbled by this. The words flowed easily as they truly came from the heart. I have struggled for months with this sense of loss. It wasn’t until I began seeing my therapist a couple of weeks ago that I truly knew what to call it. It was at that first appointment with AL that I finally learned what I was experiencing.

Loss of self, and the grief of the healthy me. It seems so simple now. These two phrases explain so well, what I have struggled so hard to explain to my loved ones for weeks, no months. The best I could come up with to explain it to them was to say: It was as if one day I was picked up and sat down in someone else’s life. There literally was this one moment where I went from being completely okay to where I was no longer the healthy woman I thought I was. I had to learn a new language, a new lifestyle, and even my social life has been impacted.

I still catch myself at moments thinking ‘Dear God please wake up, this can’t be me. This just can’t be happening.’ It has been an adjustment. I’m still not there yet. I don’t know when I will be there. I don’t know when I will truly find myself again, but I hope when I do, both parts of me remember one another.

Let’s talk about these differences Lupus and APS have brought into my life:

An Open Thank You Letter to Dr. C

Dr C,

When I think back to our first appointment, you asked me ‘Why Us?’ I knew I didn’t have time to tell you the full story,  I only told you the short important parts. I had known for two weeks I had to find a new PCP.  When I first found out I was devastated. Dr. D had been my doctor for the better part of 30 years. Yes there was a gap in there when I thought, like many 20-something year olds that I was healthy and didn’t need a doctor, so I didn’t see him. In that 10 years, he closed his small town private practice and went into a larger practice ran by Novant Health. So when I became ‘sick’ in late July/early August and found myself under his care again, I was essentially in their eyes, a new patient. To us, I was not.  My older medical files, are locked in storage somewhere. I’m not exactly sure how to obtain those, that is a question I need to ask him at some point.

The day I learned I needed to change PCPs I was angry and scared. Having a rare condition can do that to a person. It’s hard to find doctors that understand or that are willing to take the time to learn about them, or that even want to. It took me two tries to find a Hematologist that understood Antiphospholipid Syndrome. My first Hematologist left me with an official diagnosis, a lot of questions, and a big ‘see you in 3 months.’ He would not answer any questions I had and did not see the seriousness in my condition because he was not familiar with it. Luckily Dr. D, had dealt with one other patient in the 30 years he had been a doctor that had APS so he was at least familiar with it. Dr. D was a new doctor when he became my doctor.  I was 6 weeks old, he saved my life then, and in a way, he saved my life this past year too. He did a lot of hand-holding over the first few months of my journey. It was a scary time, I know not many doctors would have taken the time he did to assure me I was going to be okay, but he did.

When I started my search for a new PCP I had a few requirements I was looking for. First I needed someone close by. We had spent months driving 1.5 hours to see Dr. D for my monthly appointments. He was over seeing my INR but we had found an independent lab down here that was doing my draws and then faxing him the results each week. It worked, but it was not perfect. After I started narrowing down practices that were covered by my insurance I started researching various doctors. Your name came up fairly quickly, because you’re in the C’s. The more I read, the more intrigued I was. A newer doctor, intelligent, I stumbled across your residency biography and interests and you immediately sounded like you would be a good fit. I considered it a benefit that you were a new doctor because I felt that it gave me a better chance at finding a PCP with more up to date information on APS. There were a couple of others that were on the list so I took a couple of days to decide, but eventually I decided to make an appointment with you. I called HFP to make an appointment, and the lady that answered the phone, attempted to set my appointment up with another provider. I quickly explained to her I had already chosen which provider I wanted to see and asked if you were accepting patients still. She excitedly said yes and set up my first appointment.

So there, that’s the real answer, to that first question you asked me, ‘Why, Us?’ and why I answered with “Well, this practice because it is close by, and you specifically because you are a new doctor, because of your clinical interests, and I am hoping that combination will give me a better chance of having a doctor with up to date information on APS and that I will be of interest to you.”

Appointments, even though mine are longer than average, are never long enough for me to say thank you adequately enough. Thank you. Thank you for meeting my expectations at that first appointment and every appointment since then. Thank you for being there on the days when I’m flaring and need to make impromptu appointments, and I’m having some of my worst days. It helps to have a doctor that is as compassionate and caring as you. It also means a lot to have a doctor that can take one look at me and tell if I’m having a ‘bad flare’ or if I’m okay. I know part of that is because I see you so often right now.

Thank you for taking the time to see me as a person, not just an illness. A lot of times when a person is being treated by a bunch of specialists for a chronic illness, that is what they become to their doctors, or at least that is how it seems. Thank you for having the ability to laugh and having a pleasant personality. Those things are important especially to patients that have to see their doctors so often.

Thank you for helping me get to a full diagnosis, and seeing that Lupus isn’t a textbook condition that takes the same course in every patient. So many doctors get locked into believing it has to present in a specific fashion and forget to look beyond lab results and listen to their patient’s symptoms and family history.

Thank you for being an amazing doctor, and for being exactly what I need in a PCP. In a lot of ways, you remind me of Dr. D, and in a lot of ways, you are completely different. Both of those things, are the perfect balance. It was difficult transitioning from a doctor I had a life-long relationship with to a new doctor, but you made that transition easier in a lot of ways. Sometimes I forget you’ve only been my doctor since the end of January.

Thank you for going the extra mile, for remembering the little details, and making me feel safe.

 

Sincerely,

Dorothy (Oh I’m sorry Nicole)

Buckle-Up Folks!

I’m feeling much better after a few days on Prednisone, and in fact yesterday took my last dose of it.  I touched base with my Rheumatologist, Dr. L, like Dr. C asked me to do on Wednesday.   His nurse called back Thursday morning  with his recommendations and what he wanted to me do. My results from the last round of testing had also came back, I’m cleared to begin Imuran. Except, I’ll be starting it NOW, not in May, like originally planned. He feels this is warranted after my flare-up due to getting the immunizations Monday.

He also doesn’t think the adjustment in my Plaquenil dose from 400 mg to 200 mg has anything to do with my worsening symptoms but I find it rather curious that I had an almost immediate worsening in my joint pain and rashes after I dropped my dose to 200 mg.

I attempted to pick my Imuran up from the pharmacy Thursday evening but the pharmacist but it wasn’t in. I was told to return the next day after 4 and they should have it ready. I did just that, and sure enough. There was my new med. Waiting for me.
So this is it, I really started this med. This is one of the big guns, It’s one of the ‘serious’ medicines used to treat Lupus. I took my first dose last night with dinner, and I took my second dose with breakfast this morning.From here on out I’ll take them with breakfast. I’m really taking an immunosuppressant now.  I’m still trying to wrap my brain around that. I’m reading online and educating myself about this medication. I already know it’s going to interact with my anticoagulant, and that poses some hefty risks. If my blood isn’t adequately anticoagulated, I am at an increased risk for blood clots, which is the main feature of my other condition, Antiphospholipid Syndrome. I’m scheduled to see Dr. C Monday afternoon to have my INR checked, so I can alert him then to this quick additional change my Rheumatologist sprung upon me when I called him at the request of Dr. C. Hopefully the lab orders Dr. L wants me to have Dr. C run every 4-8 weeks will have arrived in the mail by then as well. Yep that’s right, This new med requires even more lab tests be ran. They have to keep a check on my blood cell count and on my liver function tests. I am on a med that could cause Leukemia or Lymphoma, BUT it could also be the key to making me feel better, it won’t cure Lupus, but it can improve my symptoms. Hopefully it doesn’t give me cancer in the process. Wrap your head around that one.  Really the risk of cancer, is very low.  But it was a risk they had to make me aware of before I took the medicine. Back to my INR appointment that’s scheduled for Monday though, here’s the problem, I was on Prednisone for a few days, that is known to interact with Warfarin, my anticoagulant and cause INR increases, which require decreases in Warfarin doses, if that happens. Imuran on the other hand is known to cause decreased Warfarin levels in the blood, which means lower INR, which means larger Warfarin doses. See where I’m going with this? Just call your Rheumatologist and give him a heads up about what’s going on Dr. C said, mmmhmm. Buckle-up Folks, we are in for a ride!