Frustrated and Sick

13 March 2014, 4:04am Wednesday

I’ve been M.I.A because the same week that I returned to work after the last hospital visit, I caught a cold. I haven’t been cold/flu-type sick since 2008 and I am extremely careful because I remained sick for two months. So I returned last week Monday just to start feeling an onset of grossness on top of everything else on Wednesday night and then have been out ever since. A visit to my PCP who couldn’t give me anything for it and said to continue what I was doing: resting, Tylenol, Day/Nyquil, gargle with hot salt water, and I was drinking green tea for my sore throat. We both thought I’d be able to return to work the following Monday. The “cold” or whatever this is just won’t go away. It lingers, it’s a slow progression with symptoms that come and go. More migraines than usual; restless nights; chills then hot sweats; a sea of sweat at random times; a tight chest; fingers cramping and locking and toes/ feet that follow suit, striking suddenly without warning, the pain almost unbearable depending upon the duration and intensity of the cramp. My voice started coming and going on Sunday and though I am not coughing a lot, my throat feels like it’s all torn up. In the past couple of days I’ve only coughed up a little bit of phlegm. Also I had been dizzy, foggy-headed, and later started having really bad shakes. The most worrisome thing though was when I felt my nasal passage and throat closing up and once again I had difficulty breathing. This time worse than in December because it included my nose and my already tight chest, that felt as if someone was sitting on me. It happened a total of four different times intermittently until I finally was scared enough to ask my mom if she could take me to the ER as a PCP or Walk in/ Urgent Care Clinic will send you directly to the ER for that. Of course by the time we got there, I could breathe again, only my chest remained tight. In fact, my EKG, Lung X-ray, blood work, and vitals all showed up “normal” with no signs of bacteria or infection. Again, I was going to be sent home without anything. I hoped they would at least keep me for observation as most of the “severe” symptoms weren’t a constant occurrence.  I asked the ER doctor, “What do I do if I can’t breathe again and it’s worse than the last times?” He assured me that my oxygen wouldn’t  be completely cut off and I would end up being okay and also to continue what I was doing… which I had been doing for five whole days (at that time) from the beginning with symptoms progressing for the worse. For my peace of mind, I asked him for an inhaler and something to soothe my throat. It made me feel a little better especially since the first night that the breathing issues began, it reminded me of when I had severe childhood asthma and I did start to wheeze. He said he heard a little bit of crackling on the right side of my lung but then nothing else on either side. I was so frustrated, even more so because all of their tests showed that I was “normal,” as if I was making everything up! How could that be? I am still perplexed. This doesn’t feel like a regular “Lupus flare” that I am used to, it feels like a cold/ flu and I was worried because of all the immunosuppressant drugs I’m taking and all of my current health issues, I might end up with something much worse. It’s good that’s not the case but I still hoped that something could “fix me now.” You would think I should know better by this time!  He wrote me out with a return to work day of March 13th (today).

The next day, Tuesday, I went to the pharmacy to pick up more migraine medication. The eight pills that I received two weeks ago were gone despite me trying to be frugal with them. When I got there, I was told that my insurance wouldn’t cover it because I was “picking it up too early.” I asked when could I pick up the refill? The answer was unacceptable, with no leeway, and what seemed like exactly 31 days from the date I originally picked up the expensive medication.  I asked how much would it be to purchase out of pocket. It was going to be somewhere way over $200. I couldn’t do that with all the hospital and doctor’s bills that I’ve had lately. And for eight?!  The pharmacist told me which migraine Rx would be covered by my insurance now so I sent a message to my Neurologist explaining the situation along with the request but stating I wasn’t sure what he wanted me to do or what he wanted to prescribe me. I received a call from his office early this morning saying that there was a cancellation if I could come in within the hour to see him, so I did.

We talked about different options and he gave me a Rx for another migraine medication for now (again only 8 pills are allotted per insurance, however it’s much cheaper), but I am not sure if they work yet. (I’ve taken a couple of migraine prescriptions in the past that never helped and was so happy to have found that last one). He gave me a shot today. My first shot in the butt (that I recall)~ the “highlight” of the day I guess. Then on Friday I have an Occipital Block scheduled (a shot in the neck along with an anesthetic shot because they are kind). I don’t like the sound of this one but I guess it can’t be worse than Cortisone shots in the nerves of my feet. Tomorrow I “get to” have another Echo Cardiogram done and then an event monitor put on me with instructions that I need to wear for two weeks. Needless to say, my Neurologist wrote me out until Monday. In the meantime I’m trying to get better because I need to go back to work but not being able to sleep, worrying about things, and too many unexpected drastic health changes all in a three month period. It feels like it’s one set back after another, wondering what will be next, yet hopeful because of lab work showing the numbers are moving in the right direction… for now. (Although at times they fluctuate like crazy from day to day or week to week). I don’t mean to sound negative. I used to think of myself not as a “pessimist” but a “realist.” Which was really the same thing to me in my life experience. I see now see that constant negative thoughts drain the energy, the very life out of (the collective) “us,” it is exhausting though “you” don’t realize it, “you” do worry about things that never happen, and sometimes things do turn out the way that “you” want them to, even if it’s not “soon enough.” So I teeter totter between the two extremes, trying to find a balance that I cannot yet get a grasp upon. When I thought about 2014 last year, I thought, “2014 will be the best year ever!” And realized that I had no idea what lie directly ahead. On the other hand, it re-reminds me that Life is precious and easily taken for granted; that it’s the moments, fragments of Life that truly make up Life and not just a long term “happily ever after” feeling; that we all are mortal and have a limited time to decide and do the things that we really want to do instead of waiting for another time or opportunity that may never pose itself. Life is right now.

We don’t necessarily have control over the slew of ailments, pains, etc. that our Lupus decides to sling our way but we do have control over our decisions. We decide with our doctor’s what our options are as far as treatment and discuss them if we have an issue with it or ask questions; we decide if we will follow that agreed upon treatment, we decide to be more proactive when we have to be, and most importantly we choose our attitude. To live a Life full of life to the best of our capabilities or to merely “live” as if we are only a shell of a person without a soul left. It doesn’t mean that we’ll always be happy about the circumstances; that we won’t sometimes get frustrated and angry at people; that we won’t feel exhausted from merely going to doctor appointments, procedures, and tests multiple times a week, too many times a month; and it doesn’t mean that we will never feel sad, lonely, afraid, and maybe at one point a “little bit” bitter. Maybe it all comes back to balance and breathing. I’ve been trying to tell myself to meditate. I have such a difficult time doing that because I’ve been having high stress lately and generally my mind can’t just remain still, sometimes I have a problem just laying still. My mind is like a crazy subway station, full of crowds haphazardly rushing in all different directions, it just never stops, and is random, and goes off into tangents. If I lay down too much when sick or exhausted, because I have so much to do, I feel like I’m “wasting time” even though a part of me is telling me that my body is saying that I need to rest and not to overexert myself. Okay I am convinced, I do need to work on meditating and quieting my mind. Although I’m off for the rest of the week, I’m already exhausted with the appointments I had or will be having since Monday at the ER with the five hour duration including wait time on top of feeling “sick” or whatever this is since everything showed up as “normal.”

Has anyone else had experience with feeling sick or flu-like symptoms and all tests returning as normal? Just curious.  Or are there just no answers? “It’s probably just the Lupus.”?