I’m sure I will get some slack from my family on this one but I wasn’t in the mood to share until after I had some results!
So, Monday I went to see my diabetic doctor for a checkup and we got to discussing my symptoms again in regard to my most recent diagnosis of Raynaud syndrome. The more we talked the more concerned she became about different issues and possible stenting needed in my legs so she decided to refer me to a vascular specialist in Iowa City. I pointed out that I already had a cardiologist who was heart and vascular but she preferred I see a vascular doctor who doesn’t just specialize in the heart. Due to my symptoms, she felt I needed a doctor to check out my vessels and veins throughout the rest of my body, specifically for my legs and arms due to the fact that those areas continue to go numb and change colors quite often. I also have extreme painful cramping in my legs that have been keeping me up at night. She was concerned that I could have some blockage elsewhere.
And then Tuesday, a nurse called to tell me that they had gotten me in to see the specialist this Thursday!! I will admit, I got a little nervous as to how fast they got me in to see a specialist but at the same time, I also had a very strong feeling that the appointment would be kind of pointless. Just for the fact that so many of my issues are the result of my fm…and in order to fix these issues…we need to fix the problem that is causing them. And again, my fm cannot be fixed!
I had every intention of going alone and actually argued with Tim that he stay back to work but…I lost that argument! And I’m glad I did!! Asher got to come along too and experience a day in the life of traveling to Iowa City…starting with McD’s breakfast which he really enjoyed!!
We got to the hospital and I checked in for my tests. I was under the impression that I would be doing some type of ultrasound on my body to look at the vessels and veins that go into my legs and arms…but I was way wrong!!
Instead, they simply checked my blood pressure then proceeded to check pressures in my hands by putting a miniature little blood pressure cuff around each finger. Once that was over, I was done! The tech went and got the nurse who she was working under so that she could make sure everything looked good enough to send to the doctor…and this is when I got cranky…
As the nurse was looking at my results she asked me what type of symptoms I had been experiencing. Once I explained them to her she asked if I had Lupus.
I said no, that I had a rare disease and went in to explaining what fm is. Without skipping a beat she replied in an upbeat voice “awesome” and continued saying she only asked if I had lupus because they had learned in schooling that my symptoms often stem from lupus. I looked at her and was like “yeah, you’re not going to learn about me in any college course but yep…it’s pretty awesome that I have a rare disease crushing my organs and suffocating me from the inside”!!
It’s been a long time since I have gotten worked up at an appointment so when I walked out of the room I motioned Tim from across the room where he had been hanging out with Asher…
…and we headed upstairs to discuss the results with the new doctor I had yet to see. Unfortunately things didn’t get much better. But I am so thankful my husband saw through my stubbornness earlier in the week and came along with me despite me telling him not to!! I always feel like such an inconvenience and burden to him yet those are the times when I truly do need him the most. Him and Asher were able to help distract me and make me smile as we waited patiently to discuss the results!💕💕
While I had done testing just on my fingers and hands, the doctor immediately began asking me questions about my legs and feet. At this point I was extremely frustrated because it was very apparent that nobody really knew why I was here. She brought up the fact that I had “A” stent so when I corrected her that it was eight stents due to my rare disease that had also caused pulmonary arterial hypertension and SVC syndrome, the look on her face said it all and I knew this was game over! Haha!
I won’t go into all the details because it just seemed to be a big pointless mess of confusion. I was offered medications to try and treat some of my symptoms but some of the side effects from the medication were symptoms I already experience. Plus my regular team of doctors had already said medications would not work because we need to treat the underlying issues which is the fm…and that can’t be treated!!
I declined the medications and she set me up to see a different vascular doctor in eight weeks to possibly do a bunch of testing, basically a full body scan to make sure nothing else was going on…yet admitted the fm was probably the main culprit behind all of my symptoms.
So, you are probably asking, what did this appointment accomplish? Nothing! Absolutely nothing! While I always hold on to that hope that something will help me or be able to calm my symptoms, today was another day with answers I expected, yet answers that are always difficult to hear!
Nothing can be done. Suffer through the pain and pray for a better tomorrow! I will continue to use my home remedies in hopes of getting some temporary comfort and I have also been trying to do my treadmill as my body allows. I take breaks throughout the day and just continue to push through each day that I am blessed to live.
The thing is, I expected to hear what I heard today in regard to my health. But what frustrates me isn’t just the fact that nothing can be done to help me…it’s the fact that when the nurse replied “awesome” it was a clear indicator that she was not listening and had not paid any attention to a word I said…and with my condition…we cannot have doctors and nurses who are more focused about telling patients what they learned in college classes over listening and learning from their patients!!
I am scheduled to see all three of my specialists over the next six months…cardiology next month, SVC stents in February and pulmonary in April. All appointments will require testing so I am confident that my team of doctors will be able to provide some answers and do whatever they can in hopes to help me!
And as far as today goes…I got to spend the entire day with my husband…something that seems to be even more rare than my disease these days! Not the ideal date or the best of circumstances…but it never has been for us💕💕