I have asked the question, is Covid-19 causing all these issues or my other health issues? I have had three different healthcare providers tell me that this is all Covid related. I am not the only one going through these exact same symptoms. Some have been going through it for 7 months.
Let us travel back to August. The first week of August my neurologist sent me for a brain scan. I had been having many issues effecting various parts of my body for the last 3- 4 years. I started having severe pain through my head and down through my face a year ago and was diagnosed with trigeminal neuralgia. I have had several possible auto immune diagnoses as well. In July I started having a lot of issues remember things, headaches, and unable to do my job as well as I once did. I got an appointment with my neurologist because I assumed it was something related to my head injury, I had years ago when I was in a car wreck. I wanted to see my neurologist because he is retiring. He knows my entire history. He said based on all my medical records from the past few years and the scan my diagnosis is Multiple Sclerosis. I was blown away to say the least. He stated he could do a spinal tap to get additional information, but he advised starting on some drugs that can help keep it from progressing.
I told him to slow down a minute. I must have time to process this diagnosis, pray about it, and research what I am dealing with. I told him I did not want any other testing because I do not have the money to pay for a bunch of tests that are not going to tell me anything except the stage of the disease. I have a very high deductible, so everything is out of pocket. He told me as soon as I had time to process it to give his office a call and they will get me in with a new neurologist. He also told me to avoid social gatherings and to stay away from grocery stores and restaurants because I do not want to catch Covid on top of MS. So, that is what I did. I did not attend church and stayed away from all public places. Except when I had to get tags for my car, but I did physically distance, wear a mask, and hand sanitize.
A week and a half after my MS diagnosis, I was diagnosed with Covid-19. Therefore, I am constantly asking if this is Covid-19 or my other health problem. I did not end up in the hospital with Covid-19. I did not get what I felt was deathly ill from it. At least not the first few weeks. You can go back and read my daily blogs to see what I experienced. I really cannot recall it all now. I just know it is a never-ending battle.
Since my last post, I have experienced the same things day after day. I finished my week of Prednisone. I got my blood tests back and my CRP level was 248. A normal level is 3 or below. Anything over 50 is considered very high. C-reactive protein (CRP) is made by the liver and sent into the bloodstream because of inflammation in the body. If you have an infection or have been injured, then inflammation is your body’s way of safeguarding your tissues. Therefore, CRP levels are used to determine inflammation issues in the body. Apparently, I have severe inflammation.
On Monday, the 28th, I had an appointment for repeat bloodwork to see if the steroids helped bring my CRP levels down. The problem was I woke up that night with a fever of 102.6. I took Tylenol and Ibuprofen to bring my temperature down. I finally got it down to 100.8. Doctors offices are not comfortable seeing anyone with a fever these days. So, I called ahead and let them know I had a fever to see what they wanted me to do.
My normal PCP is not in on Monday’s so I was told to go to one of their other locations where a provider would see me. I was told to call when I arrived, and they would take me in through a different entrance. That is what I did. I asked her the question that I have asked so many other providers I have seen, “is Covid-19 causing all these issues or MS?” She said her daughter has been battling long-term Covid-19 for 7 months and she is a few months younger than me. She said this is Covid-19. She said they do not know why Covid impacts people differently. She said there are thousands of people dealing with the same symptoms I am battling, and no one can help them. I told her it seems to me like no one is trying to help us.
You would think they would want to do tests and research what is causing all these symptoms but instead no one is interested. The Tennessee Department of Health called me daily until I went without a fever for 48 hours and then they released me to return to life. I am sure they have marked me down as fully recovered but I AM NOT! No one has bothered to call me back and ask if I was doing any better. I have not died therefore I am fully recovered. You are labeled dead or alive. If you are alive then you are fully recovered. It is truly ridiculous. Then you have people walking around talking about how it is all a big hoax. Newsflash people, this stuff is real!
So, I have a kidney infection. She believes the kidney infection is causing my fever. She said Covid can attack the kidneys so I am supposed to go to the ER if my temperature gets to 103 degrees or I cannot urinate or have blood in my urine. Otherwise, I am supposed to take my fever reducer and antibiotics and get plenty of rest. I laugh at the “get plenty of rest” because I feel like sleep is all I do. My CRP level did go down to 92 but she cannot put me on another round of prednisone because I have a kidney infection.
Yesterday, I felt better than I have since this whole thing started. I had more energy. I was able to walk half of the walking trail instead of just walking to the first curve. I came home and was able to cook my lunch. I did not need a nap because I did not feel sleepy. I felt like I had finally had a reason to celebrate. After lunch I took it easy. I knew if I overdid it, I would probably feel bad again. I felt like the bowling ball (aka my head) had been lifted off my shoulders. I was hopeful that I would be able to return to work soon because I thought my energy levels would just increase each day after.
Well, it was short lived. That evening something hit me. I was dizzy even when I was sitting in my chair. When I stood up, I was completely off balance and had difficulty navigating through the house. My head felt like the bowling ball had returned. I say bowling ball because that is how my head feels. It feels heavy, like it is difficult to hold up. It constantly hurts from my eyes to the back of my head down into my neck. My ears feel stopped up and are ringing a lot. My sinuses burn. I cannot concentrate, think, or talk at times.
Last night was scary, I have been sleeping in the guest room because I do not feel like walking down the stairs to our bedroom in the basement. The stairs take a lot out of me. Last night I asked my husband to help me downstairs because I did not want to be alone. I really felt like I would end up in the hospital before the night was over. I do not really know how to describe it. I have never felt anything quite like it. I had Steve check my blood sugar thinking maybe something was going on with it. It was 102 and I had eaten within the hour so that was not an issue. I had him take my blood pressure and it was 106/70. It felt like I had the worse head rush ever and just got so tired I could not stay awake. So, I fell asleep. When I woke up this morning, I felt fine.
This morning I did my normal new routine. I wake up early. Usually around 6:30am. I make my smoothie and fill it full of a lot of supplements. I also have a cup of hot honey tea and take the rest of my supplements. I take a dog for a walk. Then I go home and rest for a while before doing the next task.
When I got home, I took a road trip with Steve to Cleveland. Another symptom I get since I was diagnosed with Covid-19 is car sickness. I have always loved to travel but it is difficult for me now. I felt very sick the entire trip to Cleveland. I asked him to park at the end of the parking lot because I felt like I was going to vomit. While he went in, I stayed in the car and slept. I slept until he returned 45 minutes later. I felt better after the nap. The trip home was a little better than the trip there.
I am now ready to go to bed and probably will not finish this until tomorrow. I have been trying to write this for 2 days. I am extremely tired of being tired. After last night, I will now rank it as the worst illness I have ever had. I will finish this tomorrow.
A new day. Are you feeling better yet? That is another question I get a lot. Sure, I am ready to go run a marathon. How do I explain to people if I feel fine this hour then I will most likely crash that next hour? I had another rough night. By the end of each day my entire body feels horrible. I had issues breathing last night. I am wondering if I should start taking my inhaler before I go to sleep instead of when I first wake up. I took a shower when I woke up. The steam helps open my airways. I am losing a lot of hair. I have a lot of hair or at least it looks that way because it is naturally curly. But I am losing handfuls with each brushing. I can look at it and tell it is thinning out even though others cannot see it. I do not even have to put a comb through it to lose it. I can just run my fingers through it, and it comes out. I have been letting it grow out for over 2 years, so it now has some length to it, but I am considering cutting it because I am tired of the long hairs being all over everything. My BP has been lower than normal. I have been checking it multiple times a day. It was 94/72 when I woke up and my pulse was 52. After breakfast it was up to 110/68 and my pulse was 57. My temperature was 102.8 this morning so I took fever reducer. I did my normal pacing myself today as always. I plan a task and then plan a nap. I was freezing after my nap and took my temperature and it was 95.8. I took it 3 times to confirm. I drank some warm tea and put on a sweater and eventually warmed up. I took my temp again and it was 96.9. I am having extreme highs and lows in my body temperature but no doctor can explain it.
I decided to bake some fish and sauté some veggies for lunch. Oh yea, that is where I was going with this yesterday. So, I did a lot of research of MS and all the treatments out there. I decided not to go with any pharmaceuticals. I am not anti-pharmaceutical. I feel there are some medications out there that do help certain conditions and they have been proven to help. I am against medications that cause more side effects than help. If I take something that is going to make me feel sicker than I already feel, then there is something wrong with that. There are no pharmaceutical treatments for MS that have been proven to help MS. After doing a lot of research I decided to go with diet change and supplements.
If you start seeing gluten free, dairy free, soy free, healthier recipes on Cookin’ with Bobbi Jo, that is why. I started this about three weeks ago. I figured now is the perfect time since my taste and smell have not been working well. It comes and go. When I do have my taste and smell it is not like it was before Covid. I can only smell things that are right next to my nose. I have been experimenting and trying to figure out new recipes using the new ingredients that are anti-inflammatory.
I grew up on good southern cooking so making the decision to completely change my diet was not easy. I basically looked at it this way. Do I love food more than my health?
I am going to end this post here before my train of thought leads me in another direction. I’ve spider webbed enough in this post. Y’all have a blessed night!