I need to write. Writing is how I process and I need to process. Since our return from Bolivia the first week of October my body has ached. At first I wrote it off as the change in temperature. But it continued to worsen and about 2 weeks ago now I couldn't stand the pain in my body any longer. There seemed to be 2 things at work against me; all over body aches, and pain in my breasts along with a lumpish mass in the left one. The body aches were becoming increasingly painful, I couldn't stand to be touched, it felt as though I had been used as a human punching bag and that my entire body was a giant bruise.
As a mom this meant it was painful to hold my kiddo, as a wife I dreaded intimacy with my hubby, not because I dislike him, but because it felt like torture, not love to be held. You can imagine how heartbreaking that was. No loving mom wants to say to her daughter, "mama cannot hold you right now, it hurts too much."
So, I gave up hoping it would pass and went to Doctors on Duty because our long term Family Doctor just closed her practice. The Doc on duty drew my blood and said to check back in a week. I left feeling pushed aside and in as much pain as when I entered. My follow up was scheduled for the following Saturday, (this being a Friday) but by the time Sunday rolled around I was in more pain than I could handle. Our Sunday night date night turned into a trip to the ER where they kindly gave me a shot in the ass to help with the pain, drew their own 10 vials of blood and prescribed some heavy duty pain killers to get me though.
I went to Doctors on Duty on Monday as instructed by the ER Doctor to follow up. The Doc #2 said the blood work didn't show anything and I should see a Rumatologist because perhaps I had Fibromyalgia. (something I had suggested on my first visit) I asked them to check my breasts, because though I had mentioned it at the first appointment and at the ER no one had even checked. When the Doc (Doc #3 a female) got around to me she was shocked by a red spot the size of a quarter on my right breast, about as shocked as I was, as that was not there in the morning when I got dresses. I tried to get her to focus on the lump in the left and the severe pain in both but because of the red dot she was convinced I had an infection. She prescribed 2 antibiotics one oral and one topical and a referral for a mammogram just incase.
I was notified the next day that though I had chosen Doctors on Duty as my new primary (not because I wanted to but because no one was taking new patients besides them) my decision would not actually take affect until Dec 1st, so while they did refer me the doctors may not take me because of this. But that I could schedule the mammogram anyway and contact the Rumatologist to get on her schedule.
I quickly called to schedule the mammogram but the radiology office said I should not worry about a mammogram but just get an ultra sound. So, I scheduled that, but there were none available until Nov 28th. I then called to schedule with the rumatologist and there was no answer just a machine, I left a message. After no returned call, I called the next day and left yet another message. This went on for a week. Until I followed up with my original blood work on Sat. There I saw Doc #4 at Doctors on Duty a brand new Doc, who was kind but knew nothing of my case, having to explain all this to him for the uptinth time left me literally sobbing.
He was appalled that the Radiology office had decided what I needed instead of following the recommendation of the referring Doc #3 so he said I should call and tell them I absolutely need a mammogram on both sides. As the pain is worsening daily, even though the red mark is less defined. He knew this because he gave me a breast exam while I was sobbing. He and the nurse were also frustrated that the Rumatologist had not even gotten back to me. Said they would also call there on Tuesday. He said the pain meds that I had run out of were no good if I did have Fibromyalgia and prescribed me an anti seizure med instead that he said may or may not work but could take up to a week to have any affect. I was again balling as my pain was overwhelming, and affecting all aspects of my life.
I went to the Pharmacy to pick up the prescription only to discover that Doc #4 was too new to be prescribing the meds he had told me about. So, I left empty handed to take my daughter to a birthday party. While I was trying to enjoy the party, the kind Pharmacist did her best to solve the problem, found a comparable drug that he could prescribe and got the meds for me.
But here's the thing, the drugs, take at least a week to work, and can cause the same symptoms we were trying to cure. Knowing that this was going to be a battle, I had started doing some independent research on Google about Fibromyalgia and found that changes in diet might help so I has already eliminated everything except veggies and protein and water. So, no pain relief, plus a killer caffeine withdraw headache was the icing on the cake. Saturday was terrible.
Sunday was worse, as I took my second trip to the ER because the pain was just ridiculous. But ER Doc #2 was not nearly as helpful as Doc #1 and refused treatment. Said I should be seeing a Rumatologist...funny I said though gritted teeth as that is what I would love to be doing if only the Doctor would answer my calls. The less than helpful ER Doc suggested I go to her office in the morning, and demand my appointment.
I slept for 4.5 hours that afternoon, and then slept all night, exhausted from the pain and the lack of answers and caffeine. In the morning I went to the Rheumatologists office to get an appointment. The front desk gal said that they only schedule appointments after the doctor as decided to take on the patient, and she hadn't looked at my case yet. She was out and would look tomorrow and let me know. I let her know that it was completely unprofessional to not return messages, especially when I had left multiple messages, and that with 2 of them sitting at the desk they should be able to answer their phone and their messages. She told me they don't bother calling patients back until the doctor makes her decision. I said that was not acceptable when people are suffering and waiting on answers.
Surprise, surprise the rumatologist office did not call as promised today, until I called them at 2pm and again had to leave a message. They they left a message for me saying the doctor had decided not to see me. What??! After waiting a week and a half the Doctor decided she didn't care to see me? What in the world kind of doctor is she? There was no reason given for this decision only a suggestion to try and find someone else.
So, here I am in my livingroom having the least pain but still pain that I have had in 2 weeks, jotting down all my thoughts, because I cannot bring myself to have to explain all of this every time I have to see a new doctor and it appears that because I have Alliance I will have to continue to get less than quality care now that our beloved Doctor has gone.
I don't know if the new meds will work or not, but I do know that they have given me a crazy metallic taste in my mouth, that I can only rid myself of for a little while before it returns. I know that I don't like the way it makes me feel, and that the color of my urine is unsettling at an almost glow in the dark yellow/green.
I don't know what the mammogram that I confirmed again will say, but I pray the Doc will know something so they can do something, because I long to hold Kiley and Freddy with no pain. I don't know if they will find me a specialist who will see me, but you better believe I will be a thorn in their side until they do.
If you have Fibromyalgia and have wisdom, actual wisdom I would welcome it. But please don't tell me to exercise (I can barely move) when I can move, I am playing with Kiley, or working housekeeping. I am attempting Yoga as I hear it may help, but don't tell me to lose weight, as I have no thyroid, and no metabolism, so even though I eat very little, and move a lot, I won't lose weight (even my Thyroid doctor agrees) But I welcome real advice, with the wisdom of experience.
If you read this far I am amazed, I mostly just needed to get all this on paper, and out of my head and heart, so I can focus on getting better.
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