Happy Tuesday everyone! Today I thought I would take a break from recapping summer and provide a health update.
For those new here... I have had worsening health symptoms going on since April of this year when routine bloodwork showed that my red blood cell numbers and kidney numbers were off. I have also had swelling in my ankles, insomnia, a rash/slight darkening of skin behind one of my knees, fatigue, I get out breath with very little exertion needed, etc. Many mornings I wake up with numb hands. I literally cannot handle heat and humidity. Cardiology has ruled out my heart. I have had my lungs tested and they are fine.
Fast forward to the beginning of August, I had an ultrasound done of my kidneys, as well as lots of different blood tests done. When I saw my nephrologist, she was happy to say that my kidneys looked good. They saw no signs of lesions, stones, or anything that could be causing my blood numbers to be out of whack. My blood work was puzzling, in that she ruled out a lot of different things (lupus, thyroid, etc.) however she can't give me a definite answer as to why my numbers are still out of whack and why I am still feeling like crap. She has thrown out the theories of long term COVID, these numbers are my body reacting to a radioactive dye that I had when I had a stress test a year and a half ago?!, could be a reaction to my hysterectomy that I had 6 years ago?!?, could be a reaction to the very low dose of the blood pressure medicine that I am on (that I have been on for 2+years)... She has no idea. She has scheduled me for even more blood toward the end of September. Then depending on that bloodwork, she may decide to send me to hematology or neurology.
When I left that appointment, I was super frustrated in that no one seems to know what is going on. I also do not want to wait for months to get into a hematologist. I am not a doctor, however, it seems strange to me that of all the blood numbers that are out of whack, why are they only the ones related my red blood cells?? I also had developed a discoloration behind my right knee that was growing. It was almost like a rash; however, it doesn't itch, no bumps, etc. So, I put in a call to my Primary Care to see if I could get in with her to see about that and to also see if she could refer me to hematology. Thankfully, I was able to get an appointment for the following day.
When I saw my PCP, she had no idea what the discoloration on my skin is. She prescribed a steroid cream; however, it is not helping it at all. She agreed to refer me to hematology in that my numbers are showing me as slightly anemic.
Late last week, I got a letter in the mail saying that I have a hematology appointment on September 27. That is the earliest they could get me in.
So, in the meantime, I am learning to pace myself and give myself grace to rest. I am trying to drink lots of water and stay hydrated. I am trying to have the kids do more around the house and I am learning to say no (for example, the kids wanted to go to our town's high school's football game Friday night. I was exhausted, so I said I wasn't going. Bill took the kids, and I stayed home and watched some YouTube and then went to bed early.)
So that's the update.
Good Morning! I am not a doctor, nor do I play one on tv (HA), but I would encourage you to be tested for Lyme disease. My daughter had a plethora of weird health issues that no one could figure out. She was told she had lyme (past tense). Lyme does not go away. It can re-emerge in weird ways. (kind of like shingles comes out from having had chicken pox as a child) Although the medical community does not address Lyme, naturopathic medicine does. My daughter is a different person now compared to before her treatment and Lyme diagnosis. Again, I'm not a doctor, but once we got on the right track, her recovery has been miraculous. GOOD LUCK!!
ReplyDeleteI'm sorry you're not getting answers. That's great though you are setting boundaries for your health. Managing fatigue is important.
ReplyDeleteRachel, I am so sorry to hear you are still suffering, both physically and mentally. The pain, discomfort, and fatigue certainly affect your mental health, I am sure. I pray you get answers soon, and that you are feeling back to yourself quickly. Keep advocating for yourself, my friend! You are doing great. I hate waiting too. If you haven't yet, maybe call and tell them if they have any cancellations, please call you. Hugs and love.
ReplyDeleteHas anyone suggested checking your stomach or liver? The dark behind your knees is either a minor thing or very serious. I hope you get answers sooner than later.
ReplyDeleteDon't give up! Get a second opinion. Find a new doctor now! One of my good friends just had a "widow-maker" heart attack and barely made it after two doctors (including a cardiologist!) told her that her problem was not heart related. Thankfully Dr. #3 sent her to a cath lab in another town and she made a full recovery. Whatever your problem is, you deserve answers now!
ReplyDeleteThere is nothing so frustrating as to have something going on with your health and the cause being a huge mystery. I'm praying this next appointment will reveal some answers for you so a plan can be put in place to get you feeling much better. Please hang in there! I'm glad you are not wearing yourself out. Do keep giving yourself grace.
ReplyDeleteCould your primary doctor call and see if he can get you in earlier with the specialist? I'm sure you are worried and that doesn't help.
ReplyDeleteOh my gosh, whatever it is, I hope they can find out soon. Did you have an ANA test (for autoimmune antibodies?) I agree that you should be tested for Lyme, especially since you do a lot of outdoor hiking. My sister tested positive for it and was shocked. She had no idea, just knew that she felt like crap all the time.
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