First visit at the pain clinic

 Today I had my first visit with the pain clinic. A new road I am walking down. It was a little scary as once you get a Dr. and Pick a clinic you are stuck with that clinic and Dr. What if you don't like this Dr?  Whew I am glad too say I am really happy with my Dr. We had just over an hour appointment. She was very through. Here is some of the recap of the appointment.

We went through where I know I have OA. We started with the areas that are the worst and worked our way to the least painful. Of course I stared with my feet and ankles. Then where do we go. I went to the thumb as that is the most painful these days, shoulder, dislocating ribs, sciatica, SI joint, Lower back and the knees have a start. After thoroughly talking about each of these. The kind of pain. What surgeries I have had done. What procedures ect. Then we talked about what we can do to help each of these areas for reducing pain. It was not going to be a one thing fixes all. The plan has many moving parts. One thing I really liked about my Dr. She liked holistic, non medical and medical interventions.

I am going start using a lidocaine cream, Voltaren.  I am to use this in areas like my feet, hands, thumb areas where the pain is not deep in. 

I also have a topical essential oil that has been really helping reduce pain for short amounts of time. She liked that and is putting this into my plan to continue using it. This is short acting for pain. It is also warm feeling. So feels good for that. This works similar to the Voltaren.

Percussion Massage- This has really helped at home when I dislocate ribs. Helps settle them down. Also can help get them back into joint some what until I see the chiropractor. The massage also can help reduce the back pain. 

Chiropractor- The plan is he will keep my joints in line and open. Also put joints in place the go out like my ribs. For OA this can be an important part to help keeping joints moving freely.

For medication I have Celebrex I have taken a couple times. I am having good results with this.  Also Tylenol arthritis. The new one that has been added today is gabapentin. This is for those nights. When I am going to bed and things hurt. This is suppose to help tell the nerve receptor to calm down. Many nights I am also don't get much sleep or restful sleep. Hop is with the nerve receptors calm I can get some more consistent sound sleep. And in return also the fatigue and brain fog will reduce.

My heated blanket. Yep even that can be part of a plan. That heat at night. warming the joints. Some evening I crawl in earl just for that. 

The final part is injections and blocks.  Using blocks was something new today I learned is they use blocks also for pain.  I will go to her now for all injections except my thumb. She dose not do them. She told let her know and we will set it up. This is a big thing with OA. Injections. I was told before todays appointment that that is mostly what to expect. I am so glad my Dr. is open to making a treatment plan of so many more options. Doing a whole plan with none medication also. 

I said to the Dr. I want to start living my life again. she said "we will get me back to it." Covid is good for hiding from the world. But I sure have missed it. I am excited to see it. I pray with many interventions. Answers and working parts to the plan my pain, brain fog and fatigue will get better so I can feel like functioning again. Last 4 months. I have just wanted to sleep or cry. If I am honest with you. The last year has has been gradually turning. But November things really turned. Looking for a future again.

Back to living life.

It was is so nice to have the weather starting to warm up again. To know spring is close and the weather will be getting warmer every day to stay. I was able to get back to living life outside of my 4 walls. 

I was able to get out over the weekend with great friends. Then on Monday I was able to get out again with another friend and my niece for dinner. Her and I get out about once a month for some special time. 

Didn't I say I was going to rest when I need to. Yeah, well not doing so good on that goal. I knew this was going to be tough. I had a busy but, really fun day yesterday. I had time to rest. But no I need to get this done and message that person .... next thing you know it was time to leave again. This is just an example of one day. I will keep working on this. 

Results from the rheumatologist

 I have advocated for JM all his life. I have fought tooth and nail for that kid. I have researched, asked questions and dug for answered. It is time I start doing this for myself. This past fall, 2020 I hit the wall. I guess it was just part of 2020 wasn't it😆 My OA took a huge turn for the worst. I began to have more than just arthritis pain symptom. But crippling, exhausting, fatigue systems that at the time I did not know was part of OA.

In December I had what I found out was a OA flair up. It lasted over  almost 2 months before it settled down. I needed to do something.  It was time to get serious. Time to figure out what is going on. 

About October November 2020 I started researching. Talking to my primary. My primary and I have actually been having on going conversations. So I had been doing digging before this. But this is when things got real. I spent every free minute researching. My primary, John and agreed I should see a rheumatologist. To see if by chance I might have Rheumatoid arthritis (RA). It is common that kiddos who have had Juvenile arthritis  develop rheumatoid arthritis. My Rheumatologist was really good. She was thorough. She looked at old x-rays, currant ones, took new ones, new blood work for RA and other inflammatory disease.  

The results- I do not have RA!                                                                                                                         1.  I do have sever Osteoarthritis. There are 4 levels of OA. I have the level 4                                           2. The new x-rays and findings showed new damage. One big area is my SI joint. This damage dose explain a lot. John and I researched this. This can cause a lot of problems in your feet like drop feet, burning or stabbing feeling in your toes. Feelings similar to neuropathy. This past year I have been dealing with these feelings and problems in my toes. They at times are pretty overwhelming. Of course it was a mystery on why when I saw my foot Dr. "Another it is Brenda's feet" . It feels like neuropathy but it is not neuropathy. I do have some neuropathy in my feet also. That is a give. But this is different. There are a lot of other things the SI joint deterioration causes. This is just a couple.                                3. There is no cure. I will not get better and I will only get worse. My joints, ligaments, tendons will continue to deteriorate. To put it bluntly. There is no slowing this down. This is hard. Hard news. To know I am not 50 yet. Ok I am close 😇 And this is my out look. I will have many more surgeries in my future. I am actually already putting off 2 different operations that need to happen.  1 was scheduled for one this winter but my husband had to be taken care of first. I can wait as I will always have something.

What's next-                                                                                                                                                1. I am starting maintenance chiporatic care. Right now my chiropractor is working to get my joints opened up and in line. I have a few ribs locked up and that are back to slipping out of joint. I felt them go about 3 weeks ago. I thought I got those suckers back in. Loosen my SI joint. It is locked up. Then we can start maintenance treatments monthly.  After he did test my joints he said my hips are good. I will not need a hip replacement anytime soon! Sweet, I will take that!                                                         2. I will be going to a pain clinic to talk with them about possibly regular pain management. As yes, I am to this point with pain now. With OA the tradition pain care is steroids' and cortisone injections. This you do to treat the joints that are detreating.  I am seeing about a daily low dose medication and then those others for the big things.                                                                                                            3. I am being referred to a genetic councilor by the rheumatologist. This is to look at some other things that maybe happening. One thing the rheumatologist is thinking is I may have a connective tissue disorder. Where my tissues and bones are not staying connected.                                                                 4. This MN winter is not good. John and I will be looking to spend more time south in the winters. This will be as we can afford it and as JM is stable and he has a good team of staff that is working with him.  Talking with professionals on my team thinking dry warm may be best. Even though I do love the water.

So this brings you up to speed on the big picture. Now I can move forward with the as it happens things and keep you connected with what is going on. 

Please feel free to leave words of encouragement. Things you have found helpful. Please keep the negative and "constructive criticism" to your friends.

Background and why I am staring this blog

I have started this blog as a way to update on my health. I didn't feel Caring Bridge was the right place for posts. So after a lot of thought I decided a blog spot would work. 

Let me start first with this before I jump into the real heart of this blog. - I have dyslexia. I use to say I had. But I have learned once you always have it. You just learn how to manage it. You learn tricks. Skills and ways to help yourself. But dyslexia is never gone. Mine shows stronger especially when I am tired and stressed. The area that will affect everyone reading and following this blog is in my grammar and spelling. I do my best. I will reread. I use spell check. But it only does so much. Sorry. I am going to apologies here now, up front and ask for your patients, forgiveness and understanding.      I know some people can not get past this. These people then please don't follow my blog. If you want updates connect with John or my parents if those are your connections. Now on to what this blog is about. Thanks for those who are still here.

There is a lot going on. First let me give you some background and then I will catch you up to what is happening.

When I was 6 months old I had bars in between my feet. This was was because my feet were turned in so severely I would trip over them. Then I was diagnosed with Juvenile Arthritis. This lead to my ankle instability and then "arthritis". To Osteoarthritis (OA). At the age of 18 my Sr. year of high school I had my ankle first surgery at Mayo clinic. After this I proceed to have around 11 foot and ankle surgeries. Everything from reconstructions, tendon transfers, tendon transplant, foot fusions, removal of arthritis and bone spurs, achles lengthen and much more.  In 2018 I had a my right rotator cuff repaired from being torn. 

So this is some of what I have gone through briefly in the last years. Since 2018 other things have started to tear and be dislocating. 2020 was a really hard physical year. I started to advocate for myself and figure out what is going on. I have came to many dead ends. I ordered my Dr. reports from foot Dr. Where I did find I have Degenerative joint disease. This lead me to OA. This lead me to dig in to OA. Now remember I have had arthritis for my whole life. At some point I was told I had OA. 

I never thought much of OA. I thought OA was “just” arthritis. No one explained to me what OA was. What it dose to a persons body. Maybe it was because I was so young. Maybe it was because the Drs. really never where sure it was OA doing all this damage to my body. I have asked my specialist why are my feet doing this? I have been told "I don't know. But I know how to fix it." I was never told It was OA destroying my body.

Now I am on a search to find out what is going on with me.

What is wrong.

I will take you on my journey as John and i search for answers. I have started this search and I will be adding more posts soon on this.