My Journey with Chronic Illness

First off I want to make sure everyone understands that I feel so very blessed. This is in no way a plea for sympathy. Oh I have had those moments and many tears shed but now I realize that was not going to help me in anyway. I had kept all my pain private until just recently and by sharing I was overwhelmed with such an out pour of love and understanding. I also was surprised by how many others were suffering with their own private battles with illness and pain and they also felt so alone. This broke my heart to know so many lovely people were in pain and keeping it all to themselves, as if it was an embarrassment or something we caused or did to ourselves.

I know personally I felt like there was so much happening all at once to me that it sounded preposterous. I also felt like a whiner should I mention any of it to anyone. I have always been one to want to help others, keep a brave front and smile no matter what! When all of my illnesses began to show up, I thought I could just control them all and it wouldn’t be an issue. That my life could carry on just the same and nobody need ever know. Quickly I began to realize that was going to be impossible to do. For one my body was fighting against me completely. I was not resting or slowing down as I should have. I was trying to cover up the pain and work through it in hopes it would just go away.

Sadly all my fighting through the pain was actually making it worse. I felt as if my whole life was going in a very dark direction and the depression began to set in. I closed myself off from all the outside world. I was having issues getting my own doctor to listen to me, and I allowed it. I asked for referral to specialists, and he declined the need. I complained about weight gain even though I was eating practically nothing and again he just told me to eat less rather than explore what might be happening instead.  I accepted whatever he said, even when I knew it was wrong. But I just didn’t want to fight and he was my doctor so I allowed him to tell me that a lot of it was in my head. I was hurting so bad and felt so alone that I was actually fearing how quickly my body was deteriorating and how very limited my time might be. I was giving up….and that is not me. One final visit to my doctor shocked me completely out of this downward spiral. His total lack of caring was so evident that I knew this man could not be in charge of my life any longer. This gave me the kick I needed to take back my life and all decisions regarding my body and illnesses.

Once I allowed my friends and family to know what was happening, it felt like such a relief and to finally have those who cared about me, giving me positive feed back, ideas and input. I was no longer alone and the dark place I had been headed was immediately a thing of my past. I am still going through doctors and trying to find just the right ones. I implore all of you who might be having the same issues to please do not give up and if your own physician is not listening to you…..please please please go get a second and third or however many opinions it takes, until you feel like they are hearing you and caring for you. We are paying their bills and they work for us, not the other way around!

Educate yourself on whatever illness you may have. Join boards or social media groups, it can not only help to educate you, but also keep you from feeling isolated. Study all your medications and ask questions of not only your doctors but others who have taken these meds. Make sure you are fully aware of the side affects, long term conditions etc. You make the choices and decisions on what is going to be best for you!

My own battles are:
Severe Rheumatoid Disease also known as Rheumatoid Arthritis, it is a progressive destructive disease where the immune cells attack the joints and organs, and they degenerate. It cause deformity and pain to the joints especially in the hands and feet but not limited to.  RA also attacks the heart and lungs.

Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.

Hypothyroidism is a condition in which the body lacks sufficient thyroid hormone. Since the main purpose of thyroid hormone is to “run the body’s metabolism,” People with this condition will have symptoms associated with a slow metabolism. Fatigue, weakness, cold sensitivity, weight gain, depression, memory loss etc.

I am also now a diabetic and I am type 1. Most people who are diagnosed later in life are type 2 however in my case it has been discovered that I am type 1. From my diabetes going unchecked for so long,  I have also developed diabetic neuropathy,  which damages the nerves that send signals from your hands and feet. It causes numbness and tingling in your fingers, toes, hands, and feet. Another symptom is a burning, sharp, or aching pain (diabetic nerve pain). My fingers are almost completely numb now and I am not sure if this can be reversed or at least improved on but I am hoping.

I have degenerative disc disease and have already had two back surgeries to shave down the herniated portions on different discs.

I have recurring kidney stones, one I had to have surgically removed due to the size. Since then the others have been smaller and while still painful not nearly like the first one that was 6mm

(As of Jan 2018 I now have to add Osteoarthritis and July 2018 COPD and Orthostatic Hypotenion with Deep Vein Thrombosis )It is now 12/2019 and all my tests show that I do NOT have COPD, however I do have Pulmonary Fibrosis which is a lung disease.

Most of my illnesses are autoimmune disorders and it becomes very complicated to treat each one as the medications needed for one, can counteract medications for another.

Every day has pain, each step I take feels like I am walking on sharp little stones. Mornings are my worst and it takes me an hour or longer to move without holding onto things as I go. Just getting out of bed became a struggle, not because I didn’t want to get up, but actually being able to move and get up took a great deal of effort and pain to get moving. I have to set up all my med cups the night before as it takes far too long in the mornings to get them done. Sometimes giving my insulin shots to myself is difficult as my fingers and hands are so stiff. Picking up the smallest of items can feel like 50 lbs to me. Holding my larger birds is almost impossible some days. I can no longer feel the soft feathers of my birds or even the tender skin of my grandson. While I plan out my daily routines, there are some days I can barely feed birds and do the basics around the house. I cannot walk long distances and definitely not without someone with me as my knees can give out without any warning. A shopping trip means the next day is full of pain and very little done. I am a little OCD when it comes to cleaning so I just clean every moment I can in order to keep it all done, but this consumes so much time that I don’t have time for the things I enjoy to do most days. This is just a very small portion of the changes I am going through but I want to share this so that others reading might want to open up and share as well. If not here at least with your family and friends.

Going forward I will be devoting a section here in my blog for anyone who would like to chime in on their own struggles. I will also try to share new ways of doing things that might be easier for anyone with chronic pain. Most importantly I want to make sure that nobody feels alone. We are all going to have less than perfect moments but we do NOT need to suffer alone!