Feeling Lost

It has been way too long since I have done a blog. There have been so many topics that I have been wanting to blog about I have been almost too overwhelmed to sit down and write one. I kept pushing it off. Life has been a little hectic since moving into the new house and my body going into another flare up, but with that being said, today I finally found time to sit down and write.
    So, last month (November) I didn’t have any doctor appointments scheduled (crazy I know) so I set a goal to stay out of the doctor’s office the whole month! Which I did and I was very proud of that. I missed the “normalcy” of not having to go to the doctor all the time. There was one week I almost had to go in because I wasn’t feeling good and it wasn’t clearing up but then thankfully it did and I didn’t have to go in. Then I turned the calendar over and in December I have doctor appointments galore! My doctor appointments seem to be on the same schedule 3 months or 6 months and due to the amount I have we try to spread them out but sometimes they just overlap. Thankfully I am able to schedule them on days I don’t work and can spend the next day resting. Doctor appointments really take a toll on my body – physically and mentally. I was  happy that I stayed out of the doctor’s office for a whole month but then on Wednesday, December 5th,  I had to go back to the doctor. That day it didn’t seem to bother me but afterwards it was “weighing” on me more than I thought. I felt defeated and lost, like I was out here on an island all by myself while the rest of the world went on with normal things. I was feeling angry, defeated, and lost. My low grade fever came back again so the reason I had to go back to the doctor was for more blood tests to see if they will give any answers. We are certain this a flare-up just don’t know what disease is causing it. I was told that eventually I may start running low grade fevers as this runs it course on me. Last year I had them every now and then, but they would last for 2-3 days and be done. I didn’t even need Tylenol. Ever since the end of July I have been dealing with them on the “regular” now. It mostly ranges from 99-101. Sometimes the Tylenol lowers it enough to “break” the temp. The fevers have been sticking around for 2 weeks or more now. I will get a few weeks of a break, then if I over do it, or weather changes, it comes back. I am getting tired and I know when it’s happening now and every-time it comes back I just feel so defeated. I thought once these fevers started happening it would be possible to diagnose –  again wrong thinking. I had kind of put getting diagnosed with something on the back burner because I knew it was going to take awhile but;  in October we really thought it would show on my blood tests but it still showed low positive. We thought for sure we would finally “catch” it because I was in the middle of a flare-up but it didn’t. I had gotten my hopes up so much that for sure this would show what we needed and I could finally get diagnosed. Instead just the opposite happened. “We know something is wrong but don’t feel confident to diagnose it yet.” Fast forward to now I have to put the thought of finally getting diagnosed with something on the back burner. I try to continually remind myself we will get there one day. One day this will have a name(s). So for now I just keep going with the flow as best as I can.  Now, I have several new tests to take as well.
     This week has been really difficult. Thursday I had some appointments – one included a visit to the dentist. On the way to the dentist,  Cleveland Clinic called and said Dr. Gota couldn’t do my appointment because she was out of the office, so they scheduled me with the nurse practitioner for sometime in January. Then 10 minutes later I get a call from them saying we have to see you before the calendar year ends, thankfully I was able to get back in on the day I had originally scheduled, but still with the n.p. In a way I felt good about that and at peace. The last few appointments have been kind of hard with Dr. Gota (one appt she said I needed to stop focusing on walking because it would be awhile till I get to walk long distance again then the most recent appt in July she was upset I was still in my wheelchair and not just using a walker.) I really appreciate all that Dr. Gota does and has done –  she found a good medicine for me and knows a lot about Fibromyalgia. This “other” stuff that is going on doesn’t seem to be her focus. So I am excited to get new eyes and a new person to see there. I will see how it goes.   After that phone call it was time for the dentist. My dry mouth has started to really cause problems and my front teeth just aren’t strong due to being born with a cleft palate and now having acid reflux or this disease. When I was in high school and I got my braces off, my one tooth got kind of messed up (the brace was really stuck on that tooth) so then a few years after that, I got a cavity that was “deep” 😳 so they fixed that a few years ago. A few weeks ago my filling fell out thankfully I haven’t had any pain or infection or anything. Yesterday at the dentist I wasn’t sure if I would have to get a root canal or they would just pull it. Next thing I know I hear so sorry we have to refer you to an oral surgeon. I did the best  I could to hold back tears. I thought in high school I was done with all of my mouth surgeries. I was so mad and embarrassed at myself. Why can’t I just be normal, why can’t my teeth just do what they are supposed to do. I thought for sure the oral surgeon that had done all my mouth surgeries due to the cleft lip and palate would be retired so I was feeling bummed. But here came a wonderful blessing –  he hasn’t retired. I felt so much relief. I’m not worried about this procedure because I think it’s pretty simple –  I am just frustrated and mad at myself. So after dealing with all that I get out to the car and see a missed call from Dr. Straniero’s office. They cancelled my appt on December 20. I knew he was retiring but I thought he was finishing out the year and I hadn’t been contacted by them and I knew another rheumatologist was taking over for him. The call yesterday was saying we had to cancel your appointment because he retired yesterday. I cried and cried. I was not happy and I felt so lost. I thought I was going to have one more appointment with him and could ask more questions and thank him for all he has done for me these 2 years. So I called the office and said ok I wasn’t aware and they said I was supposed to have gotten a letter in the mail explaining all of this about a month and a half ago so it got lost somewhere in the mail or hasn’t gotten forwarded here. So last night I was dealing with all that. I didn’t think anything else would happen. This morning I wake up to the voicemail of sorry the doctor taking over for him is all full now and can’t take any more patients we need your address to send you all the medical release papers and you have to go through your primary care doctor to get you referred to another rheumatologist. I cried yet again for awhile this morning. I honestly had no idea a doctor retiring would have such an impact on me.  When all this started I remember saying to Mom what am I going to do when all my doctors start to retire. I’m not mad at the doctors, I want them to enjoy being retired and wish them all the best. When you have a chronic illness saying “goodbye” to a doctor is hard as I have learned this week. He started me on this “journey” and was so helpful and we even talked about Iowa! He did one of his fellowships there. He worked so hard to try and figure out all of my problems. He was extremely understanding and had a lot of knowledge. When I first went to him in June of 2016 I wasn’t feeling great, my joint pain was starting. I could still walk and was still pretty independent at that point. He saw my decline in health and offered support in deciding when I should get a walker and all that. I have many mixed feelings about going to a new rheumatologist. I don’t even know where to start. They will just know me and see me in the wheelchair they didn’t see the decline or how healthy I used to be. Thankfully Dr. Straniero was very thorough and I’m sure he left good notes. So my mind the past 3 days has been all over the place as well as my emotions. I usually act as if everything is ok even though it’s not but this is too much to “keep” in.
  Yesterday on the ride home I cried so much. I was so done with all of this. I was questioning why did  this happen. Why can’t I just be a simple normal patient and get an easy diagnosis so we know what we are actually dealing with? Why can’t I walk? I was tired of dealing with this low grade temp. I was exhausted and tired of doing this. I just wanted to be healthy. I got mad that I was this upset that a doctor was leaving. But I realized people with chronic illness get to know their doctors and we trust them. Especially rheumatic disease – it isn’t something like a common cold where you can go to any doctor and they know what to do or know what’s wrong with you. I know soon I won’t feel this lost feeling and everything will go back to my new normal once again. I decided it’s okay to feel all the feels 😓. It is okay to have rough days and be mad. I know soon it will all settle down. I normally focus on the positives and things I am thankful for. There is still a lot to be thankful for. Christmas is one of my all time favorite holidays. I plan this month to focus on “self-love”. I have been reading a lot  of verses and doing a lot of praying. I have been reading and doodling more  which is something I also enjoy. So, tomorrow is a new day and I know doctor’s offices are closed on the weekend so I won’t have any phone calls 😜 to start my day off. But in all seriousness all will be good again and I just need to let go and let God.

“Never will I leave you; never will I forsake you.” Hebrews 13:5

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