During the past few weeks, while dealing with this flare/decline (call it whatever) and being in the hospital, I have had my share of seeing some new doctors. Some of them were caring, and others not so much. While admitted at University Medical Center Brackenridge, I was seen by internists, who were nice, and listened to what I had to say, as well as by a new rheumatologist (an adult rheumy). This doctor was interesting to say the least. Although he spoke with Dr. Carrasco before seeing me, he completely ignored things that my family and I were telling him about my history, and even questioning Dr. Carrasco's diagnoses. Now I have run into this before, due to the fact that with some of my diseases I do not present like a "typical" patient would. I have always known this, and there have been a select few number of doctors that haven't been sure of one of my diagnoses, but the doctors at the leading rheumatology centers have. He was determined to believe that the cause for my hand pain was tennis elbow, and a shot of steroids would get rid of it (the shot didn't help by the way). He said that I did have a mild case of Fibromyalgia, because I had 4 of the 18 tender points. Now mind you, I have been seeing a pain management specialist for several years, and he treats Fibro patients. Surely he and Dr. Carrasco (who also treats them) would have said something if they thought that is something I had. Plus the four "tender points" were common areas of tenderness for myositis patients, and those using a walker. He also kept on saying I had migraines and tried to give me migraine meds. I only set headaches occasionally as a reaction to infusions, and yes I did ask for some breakthrough pain medication for a headache that day, but when you have high blood pressure your going to have a headache. He also didn't listen to the fact that my eyes were slightly dry due to cataracts surgery, not another autoimmune disease. My dry eye test was barely abnormal, and I just saw the ophthalmologist a couple of months ago, and he would of said if my eyes were extremely dry enough to need prescription medicine. My mom has dry eyes bad enough to need a prescription for Restasis. I could continue to go on, but you get the idea. He even yelled and was really stern with my mother. Luckily he did not want to be involve in my case and treat me. The whole experience of being at Brack was just not pleasant. You start wondering which doctor is right and feel confused. My faith having grown a lot, really kept me from becoming overly hysterical. I did have a few moments of crying, frustration, and confusion, but was able to ground myself pretty quickly. I felt a peace that can only come from my faith and trust in God, and the chaplain at the hospital said the same thing. That peace was definitely crucial in helping me deal with the news I received at my appointment with Dr. Carrasco this past Thursday.
When I saw Dr. Carrasco on Thursday, he said that he had not seen me as bad I was/am since he saw me for the very first time, if ever. He was puzzled as to why the rheumatologist at Brack had ordered a bunch of tests that had already done and in my records. He was professional, but you could definitely tell he did not agree with what the Brack rheumy said. He said that my lab results prove that. A high WBC and SED rate indicating inflammation, and an elevated Aldolase indicating muscle inflammation. Dr. Carrasco said that with this flare/decline he would normally start me on steroids (IV and/or oral), but with my high blood pressure, and previous longterm steroid use that caused bone issues, its not as easy a decision whether to do them. If the HBP gets stable, he would do a lower dose of IV steroids over a 4 week period so that cumulatively I would get 1g. I also need to have another swallow study done, this time later in the day when my muscles are more fatigued. The one I had while at Brack was done in the morning, and the steroids had calmed the inflammation in those muscles, so the study looked good. The speech therapist says its challenging because the study is a snapshot in time, so you may get all good swallows at the time of the test. Hopefully this second (3rd total) will be more accurate in showing the difficulty I'm having since it will be done later in the day. I have had to stop eating rice, crumbly toast, bagels, and other foods because I choke. It doesn't happen very often, but its a concern because of the risk of developing aspiration pneumonia. If I develop that even once, I would have to have a tube placed so I could get nourishment. Thankfully were not there yet, but thats why Im having to do some dietary changes, and work on exercises from speech therapy to help with muscle strength. But its a fine balance because you don;t want to overwork them and fatigue the muscles thus making it more likely to choke. I also will be having an angiogram to look at the blood vessels in my hand because my hands turn really red, and then blue, purple, and white. My PT Brandon and a new OT are coming out to my house and working with me. He says that there will be a point, possibly soon where I have to start using my electric wheelchair in the house. My muscles can't regenerate, so when I lose that I don't gain it back. Dr. Carrasco has decided to try and increase my CellCept. Typically it takes 2-4 months, for a "normal" patient to know if the medicine is helping to stabilize things. But for me its more like 3-5, if not longer. This is why he is not yet switching medications. If we do switch, it will most likely be to a drug known as Azathioprine or Imuran. The big risk is that it is a Group 1 carcinogen, meaning it has an extremely high risk of causing cancer. Sadly for me, that is not even a factor in deciding on whether to take it, as it would be for most patients. This is because with all the chemo, biologics, steroids, and just having this disease and not being under control, even if they were to stop all medications, it is still a matter of when not if I develop cancer, most likely a blood cancer such as Leukemia or Lymphoma. This is why I go up to Texas Oncology for weekly blood work. I see Dr. Carrasco again in a month, and unfortunately there is nothing I can do to help with the decline/increase. All I can do is try to adapt to the new struggles, and focus on energy conservation for my muscles, and things to help me not choke and prevent me from getting aspiration pneumonia. I will get another pulmonary function test to see how the muscles around the lungs are doing, if there getting weaker, and to make sure the lungs themselves aren't affected.
As you can imagine this has really been an emotional and physical roller coaster. But I will say, that despite being seen by an uncaring rheumatologist, I am so blessed to have caring doctors such as Dr. Carrasco, my palliative care doctor, Dr Friedman, Dr. Markley my primary, Dr. Higginbotham my pain management doctor, Dr. Cline-Burkardt my Hematologist and Dr. Price my PT. Knowing that I have both intelligent and caring doctors involved in my care, makes dealing with this easier in some ways. They make me feel as though you I am in good hands, and that they really care about me as a person, and that I'm not just another patient to them. Dr. Carrasco for example is the honoree for this years Austin Walk To Cure Arthritis, which is sponsored by the arthritis foundation. He is the team captain for team Specially For Children. To spend his personal time to participate and lead a team for the walk, when he is so busy taking care of patients, shows how dedicated he is to the cause of not just treating juvenile arthritis, but finding a cure. I just came across Jude 1:22 which says, "And some have compassion, making a difference:…" I think this scripture verse describes Dr. Carrasco (and the others I listed) perfectly, because his compassion for his patients and their families is making a difference in their lives. It shows them, that there are doctors that are both incredibly smart and good at what they do, but care about their patients as people. I think this brings them immense comfort, making them feel that their child is in good hands. This is certainly true for me and my family. He, and others, are also making a difference for future doctors, because medical students and residents can see how a doctor should treat their patients, and their families. That is a big contribution to the medical world.
With all that has been going on, it has been hard for me and my family. However, I know that my faith and God, will help me get through this, both physically and emotionally. I have such a wonderful support system of family, friends, my church family, and even my core medical team. Despite having more difficulty doing things, I am continuing to live life to the fullest. Im getting back into my schoolwork, having to take a break with being and the hospital and all, going to church and my Tuesday night Bible study, helping out with the youth group at church, going to book club, and taking a spiritual gifts class at my church, which is being taught by a dear friend. Yes, there are days where I'm so exhausted, that I could just stay in bed in sleep, but I don't. I want to go out and live life, and do as much as I can for as long as I can. Each day is a new day, and a gift and a blessing from the Lord. We must all live each day to the fullest, because we never know what life may bring. I thank God for giving me anew day each morning. I do my best to live each day honoring God, and living a life filled with joy and peace.
Note: The Arthritis Foundation's Austin Walk To Cure Arthritis, is Saturday April 26th at Concordia University. For more information on the walk, and/or if you would like to make a donation, specifically for team "Specially For Children, go to www.walktocurearthritisaustin.org. There are 300,000 US children that suffer from Juvenile Arthritis, including almost 1,900 right here at home. Please help us end the pain and suffering.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
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