Hello hello! I have been getting a lot of messages about how my appointment in Iowa City went on Friday so finally after a busy weekend, and busy start to the week…I can provide an update!
Well, it’s Iowa City so we know to expect the worst and hope for the best…or whatever that saying is! As far as my pulmonary testing…aka…breathing tests…they have slightly gotten worse. Not a surprise though because I have had some pretty intense symptoms. However, good news is that my oxygen actually went up a point during my six minute walk so I am praising the Lord that no oxygen is needed for me at this time!
I have also been getting puffy in the mornings and the chest pressure and shortness of breath are slowly working their way back to making daily life a little more challenging for me so I decided to bring those issues up while I was there as well.
The doctor first assured me that he had been keeping a close eye on a certain area of masses in my chest and informed me that he had looked over my scans from a few months ago when I had my SVC stents opened up and not much looked to have changed. Very good news!! He also pointed out that a lot of these symptoms I’ve continued to have are the result of my SVC syndrome as the doctors were not able to open up my stents last time as far as they typically have been able to in the past. Blah!
The doctor and I then reviewed my most recent symptoms in regard to when I exercise. Okay people…I walked 40-50 minutes a day for five days…and gained almost 10 pounds…in FIVE days!!! Also when walking, my right foot and hands would start to go numb and then my hands would turn all kinds of crazy colors from white to blue or red! Naturally I stopped walking but then I would notice my hands did the same thing just from walking from my house to the car…not a terribly long distance. I assumed it was lack of oxygen but again, I had passed the six minute walk so the doctor was pretty confident my oxygen was okay.
And this is when I was diagnosed with a new disease, Raynaud phenomenon, a rare blood vessels disease.
The doctor simply encouraged me to wear gloves and to keep warm as much as possible…even wearing gloves on warmer days when I don’t think I need them.
The doctor and I continued to discuss how the progression of my fm thankfully seems to be slow for now. And as far as my symptoms, unfortunately I just need to figure out how to deal with them because doctors are starting to be limited with how much they can do…which brought us back to my walking. He asked me if I had stopped walking because of my concerns or because I physically couldn’t do it anymore and I replied…”I stopped walking because I didn’t want to gain another 10 pounds”!! Haha!
The fact of the matter is…I have already learned how to deal with my symptoms…I push myself. A regular day of getting the kids up and off to school, simple meals or light housekeeping…is harder than anyone will ever know. Everything I do requires more effort than it appears, but I do it. I’m stubborn and don’t want this disease to overtake me, but I’ve also matured…just a little😉…so I know when I need to stop or slow down because I am at my limit.
You bet I will!!! I was back on the trail the next day!!
I push myself through life every day so I can push myself through some exercise! I just need to pace myself and continue to listen to my body! I need to challenge my right lung in order to build its capacity and try not to lose what little function I have left, all while being careful not to put too much strain on my left lung and heart to cause even more damage by overworking them because I’m compensating for my bad lung. It’s a fine line but I know it’s doable…I mean I’ve been doing it for 15 years so I can do it another 35 years right?!
While another diagnosis is definitely not what I want and can be very frustrating because it’s just one more way for my own body to attack me, if the only medical recommendation it requires for now is that I wear gloves and stay warm…I’ll take it. Now that I’m thinking though…I should’ve told him to write a prescription for me to move south during the Iowa winter months!
So that’s my update. Basically…I’m tired and puffy! Haha! And honestly, I thought I was handling things pretty well until I sat down to write this blog and found myself bawling! But, I almost never cry for myself anymore. The Lord has proven himself to be faithful over and over to me so I know He has a purpose for allowing yet another medical issue to consume my already broken body. I trust Him and know that my healing will come because He already promised that to me!
I really am okay!! But…I cry for my husband. Tim wasn’t able to come with me to this appointment so I knew he would be waiting eagerly for my call to hear the outcome of my day. He has rarely missed any of my appointments but with the crazy hectic life we live, he has had to miss a few recently and I know he hates it! Especially because I have called him crying each time to discuss the progression. This time though, I was happy to say I didn’t cry when I called him. While my breathing was worse and I had a new diagnosis, I focused on the fact that my oxygen was up. I was also encouraged that I have a doctor who is supporting me when it comes to pushing myself! Of course I still need to be careful but…I don’t know, it’s hard to explain but having a doctor who believes I can still improve even if it’s my own doing without medical intervention…and seems so hopeful right along with me…makes a huge difference!!
And while I consider this to be a decent appointment, I cry because I will never be able to make that phone call to my husband and tell him I’m cured. I will always have to come back for an appointment and sometimes that makes me feel like I am disappointing Tim…even though I can’t help my illness…I still feel like I’m letting him down when I have to tell him my disease has progressed.
I cry for my children. Asher has been to more hospitals and doctors with me than any five year old should have to be….just last week at a diabetic appointment…
I cry because my kids have a sick mom and while I know God is using me for something, to my kids…I am still sick. I cry for the times when I’m too tired to play or too sick to go to one of their activities. Although I am extremely grateful to be able to say that I have not missed a single activity or event this year!! I have seen Skye perform at every event for colorguard!!
I cry because I will never be able to come home from a doctor’s appointment and tell my family…mommy is all better.
But, I am happy! I love my life and I have been blessed with an amazing family!! I will never get better but I can pray and fight like crazy to maintain the health that I have now!! And again, I know that Jesus died on the cross for me and someday when I come face to face with Him, I will be healed. I truly know this!!
So I cry for my family because I do not want to be the reason they lose faith. I don’t want them to turn hard and bitter or angry and cold just because I am sick and have had to “go through so much”.
And I cry for the rest of my family and friends because I know so many of you feel helpless and don’t know how to respond.
I will tell you this though…please never tell me you are sorry because there is nothing to be sorry for!! I am able to enjoy and appreciate the little things that so many take for granted!! I can praise the Lord for appointments when there is no progression and I can also praise the Lord when I receive what seems like discouraging news at the time.
Monday, the kids didn’t have school so Leah woke up bright and early to help me do chores so daddy could sleep in a little before going to his other job…Then when we got home from chores, I took the kids for a walk on the bike trail…
And the rest of the week is going to be filled with orchestra concerts, dance clinics and colorguard performances!!
So see?! I have had a blessed and fun filled week!! The new diagnosis and progression of my illness might prevent me from doing some things…but it won’t keep me from living in the moment and appreciating what I can do! And the only reason I am able to see sunshine through so much stinking rain is because of Jesus!